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Confused Minds, Burdened Families: Finding Help for People With Alzheimer's and Other Dementias July 1990 OTA-BA-403 NTIS order #PB90-259540
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Recommended Citation: U.S. Congress, Office of Technology Assessment, Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias, OTA-13A-403 (Washington, DC: U.S. Government Printing Office, July 1990). For sale by the Superintendent of Documents U.S. Government Printing Office, Washington, DC 20402-9325 (Order form can be found in the back of this report.)
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Foreword Taking care of a person with Alzheimers disease or another disease that causes dementia is a distressing process that may last for many years. For a variety of reasons discussed in this OTA report, families and others often have great difficulty locating and arranging the health care, long-term care, and other services they need to help them care for their relative or friend with dementia. People with dementia who live alone and have no family member, fiend, or neighbor to help them are not able to locate or arrange services for themselves and often are not aware of their need for services. As a result, some people with dementia do not receive any services. Some receive inappropriate services, and some are connected-sooner or later-to an agency or individual that provides the kind of help they need. Not all services that may be needed for a person with dementia are available. The lack of sufficient services for people with dementia is an important public policy issue that was discussed at length in OTAs 1987 report, Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias, and remains to be resolved. To plan realistically for the care of their relative or friend with dementia, however, families and others need to know not only what services are available but also what services are not available. OTA estimates that there are now about 1.8 million people with severe dementia in the United States. The recently reported results of a study in East Boston suggest that there may be as many as 4 million people with Alzheimers disease at all levels of severity. Due to the aging of the population, these numbers will increase dramatically in coming years. This OTA report analyzes the problem of locating and arranging services for people with dementia, presents a framework for an effective system to connect them to appropriate services, and discusses congressional policy options for establishing such a system. One of the main policy issues is whether the system should serve people with dementia exclusively or serve people with other diseases and conditions as well. Some Alzheimers advocates and others believe that only a system intended to serve people with dementia exclusively would be sufficiently responsive to their unique problems and needs, whereas others believe that a system intended to serve people with dementia and people with other diseases and conditions as well would be more effective than a dementiaspecific system in connecting people with dementia to appropriate services. In the course of this study, OTA has been impressed by the large number of agencies and individuals that are trying to provide appropriate services for people with dementia and to connect them to the kinds of services they need. To establish an effective system to connect people with dementia to services would require the coordination and consolidation of these agencies and individuals efforts and would undoubtedly engender some conflict and disagreement about which agency or individual should implement the system in a given State or community or at the national level. On the other hand, the lack of such a system means that the continuum of care these agencies and individuals are trying to create may not be accessible by the patients and families who need it most. On behalf of OTA, I wish to thank the advisory panel, OTAs contractors, and the many other individuals who helped OTA in the preparation of this report. As with all OTA reports, the content of the report is the sole responsibility of OTA and may not reflect the views of those individuals. /f/ &AA# k. JOHN H. GIBBONS u Director
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Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias Review Panel David F. Chavkin, Chair Washington College of Law American University Practicing Law Center Washington, DC Mary R. Barringer Alzheimers Center Southern Illinois Of Medicine Springfield, IL Robert H. Binstock School of Medicine Case Western Reserve University Cleveland, OH Gerald Born Division of Community Services Madison, WI Nancy Nevloff Dubler Division of Legal and Ethical Issues in Health Care Montefiore Medical Center Bronx, NY Nancy Gustafson Visiting Nurse and Home Care, Inc. West Hartford, CN Rosalie A. Kane University of Minnesota School of Public Health Minneapolis, MN Kathy Ann Kelly Family Survival Project San Francisco, CA Glenn Kirkland Maryland Alzheimers Association Bethesda, MD Dennis Kodner Department of Community and Preventive Medicine New York Medical College Valhalla, NY Richard C. Ladd Oregon Senior Services Division Salem, OR Grace Lebow Aging Network Services Bethesda, MD Nancy E. Lombardo Alzheimers Association Concord, MA Marcie Parker United HealthCare Corp. Minneapolis, MN Diane Piktialis Work/Family Directions, Inc. Watertown, MA Ray Raschko Elderly Services Community Mental Health Center Spokane, WA Burton V. Reifier Bowman Gray School of Medicine Winston-Salem, NC Laurence Z. Rubenstein VA Medical Center Sepulveda, CA Barbara Schneider Elverson. PA Mark E. Williams University of North Carolina Chapel Hill, NC Rick T. Zawadski University of California San Francisco NOTE: OTA appreciates and is grateful for the valuable assistance and thoughtful critiques provided by the advisory panel members. The panel does not however, necessarily approve, disapprove, or endorse this report. OTA assumes full responsibility for the report and the accuracy of its contents. iv
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OTA Project StaffConfused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias Roger C. Herdman, Assistant Director, OTA Health and Life Sciences Division Gretchen S. Kolsrud, Biological Applications Program Manuger l Katie Maslow, Project Director Kerry Kemp, Analyst/Division Editor Kackie Keller, Research Assistant Pamela West, Analyst 2 Support Staff Cecile Parker, Office Administrator Linda Rayford-Journiette, Administrative Secretary Contractors Sharen K. Eckery and Kathleen Smyth, University Hospitals of Cleveland Lisa P. Gwyther, Duke University Medical Center Nancy L. Mace, Baltimore, MD Martha Mohler, Chevy Chase, MD Ramon Vane, Lourdes Birba, Yasako Sakamoto-Kowalchuk, Ralph Forquera, Rose Cosgrove, and Denise Nelsse, Los Angeles and San Diego, CA Steven H. Zarit, Eileen MaloneBeach, and Diana L. Spore, Pennsylvania State University Publishing Staff Katie Boss, Publishing Officer Chip Moore, Publishing Assistant Debra Datcher Cheryl Davis Dorinda Edmondson Steve Kettler Christine Onrubia Ted Williams Susan Zimmerman Editor Linda Starke (Contractor), Washington, DC 1 Through September 1989 2 Analyst until November 1989
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Contents Page Chapter 1. S ummary and Overview . . . . . . . . . . . . . 3 Part I Chapter 2. The Need for Public Education and Information and Referral... . . . . 73 Chapter 3. The Need for Outreach and Case Management . . . . . . . . 107 Chapter 4. Questions That Arise in Making Decisions About Services . . . . . 139 Chapter 5. Concerns About the Quality and Appropriateness of Services . . . . 159 Chapter 6. Linking Veterans With Dementia to VA and Non-VA Services . . . . 201 Part II Chapter 7. State Programs and State and Community Service Systems That Link People to Services . . . . . . . . . . . . 227 Chapter 8. Agencies That Might Constitute a Uniform National Linking System . . 261 References . . . . . . . . . . . . . . . . . . . 347 Appendix A. Method of the Study . . . . . . . . . . . . . 387 Appendix B. Acknowledgments . . . . . . . . . . . . . 390 Appendix C. Reports by State Alzheimers Disease Task Forces and Advisory Committees . . . . . . . . . . . . 392 Appendix D. Glossary of Acronyms and Terms . . . . . . . . . . 395 Index . . . . . . . . . . . . . . . . . . . 407
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Chapter 1 Summary and Overview
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CONTENTS Page INTRODUCTION . . . . . . . . . . . . . . . . . 3 Overview of the Problem . . . . . . . . . . . . . . . 4 Congressional Interest . . . . . . . . . . . . . . . . 8 Locating Services for Mrs. D: A Case Example . . . . . . . . . . 8 FACTORS THAT DETERMI NE THE KIND OF SYSTEM THAT IS NEEDED TO LINK PEOPLE WITH DEMENT IA TO SERVICES . . . . . . . 11 Characteristics and Care Needs of People With Dementia . . . . . . . . 11 Characteristics of Families and Other Informal Caregivers . . . . . . . . 18 Characteristics of the Service Environment . . . . . . . . . . . 22 REASONS WHY PEOPLE WITH DEMENTIA AND THEIR CAREGIVERS MAY NOT USE SERVICES . . . . . . . . . . . . . 26 FRAMEWORK FOR AN EFFECTIVE SYSTEM TO LINK PEOPLE WITH DEMENTIA TO SERVICES . . . . . . . . . . . . . 28 Four Essential Components of an Effective Linking System . . . . . . . 28 Criteria for an Effective Linking System . . . . . . . . . . . 32 The Role of a Linking System as a Source of Potential Support . . . . . . 34 AGENCIES, ORGANIZATIONS, AND INDIVIDUALS THAT LINK SOME PEOPLE WITH DEMENTIA TO SERVICES . . . . . . . . 35 Private Agencies, Organizations, and Individuals That Link Some People With Dementia to Services . . . . . . . . . . . . . . 36 Federal Agency Programs That Link Some People With Dementia to Services . . . 41 State programs and Service Systems That Link Some People With Dementia to Services . 43 Community Service Systems That Link Some People With Dementia to Services . . 46 Agencies That Might Be Designated To Constitute a National Linking System for People With Dementia . . . . . . . . . . 48 OTHER CONSIDERATIONS IN CREATING AN EFFECTIVE LINKING SYSTEM FOR PEOPLE WITH DEMENTIA . . . . . . . . . . 49 Special Problems in Linking Ethnic Minority People With Dementia to Services . . . 49 Questions About Making Decisions About Services for People With Dementia .,.,.........52 Determining g the Quality and Appropriateness of Available Services . . . . . 54 Linking Veterans With Dementia to VA and Non-VA Services . . . . . . 55 The Relationship of the Linking System to Congressional Proposals for New Long-Term Care Benefits . . . . . . . . . . . . 58 Other Considerations . . . . . . . . . . . . . . . . 58 CONCLUSION . . . . . . . . . . . . . . . . . . 60 POLICY ISSUES AND OPTIONS . . . . . . . . . . . . . 63 B OX Page l-A. beating Services for Mrs. D . . . . . . . . . . . . . . 9 Figures Page 1-1. Essential Components and Criteria for an Effective System To Link People With Dementia to Services . . . . . . . . . . . . 29 1-2. A Brochure Publicizing Elderlink, a National Telephone Information and Referral program for Elderly People Initiated in Illinois in 1989 . . . . . . 40 1-3. A Prescription Form for Use by Physicians in Referring Alzheimers Patients to Community Services, 1990 . . . . . . . . . . . . 61 Tables Page 1-1. Coexisting Medical Conditions in 100 People With Dementia Served by the Community Mental Health Center in Spokane, Washington, 1988 . . . . . 14 1-2. Services That May Be Needed for People With Dementia and Their Families . . . 16
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Chapter 1 Summary and Overview INTRODUCTION In 1987, OTA issued a comprehensive report on Alzheimers disease and other diseases that cause dementia, Losing a Million Minds: Confronting the Tragedy of Alzheimers and Other Dementias (831). That report described the devastating impact of dementia on the person and the equally tragic consequences for the persons family. It discussed the care needs of people with dementia and the complementary roles of families, community agencies, and other paid service providers in meeting those needs. The report described Federal policy options to increase services, educate and train service providers, improve quality of care, and provide adequate funding for services through public and private sources. A survey of family caregivers of people with dementia, conducted for OTA in 1986, raised one issue not addressed in the 1987 report. The survey found that, in addition to many other problems, family caregivers have great difficulty locating services. Many caregivers said they did not know what services were available in their community. When asked what kind of help they needed to care for their relative with dementia, the caregivers identified the need for assistance in locating people or organizations that provide care as second most important, following only the need for a paid companion to give the caregiver a rest (926). Many of the State task forces and committees that have studied the problem of Alzheimers disease and other diseases that cause dementia have noted the difficulties people encounter in locating needed services (see reports from Arizona (37), California (99), Connecticut (142), Florida (215), Georgia (246), Illinois (351), Iowa (360), Kansas (396), Kentucky (408), Maryland (497), Massachusetts (500), Michigan (530), Minnesota (536). Missouri (543), Nebraska (592), New Jersey (599), New York (602), Ohio (621), Oklahoma (626), Texas (790), Virginia (870), and Wisconsin (920)). The Wisconsin Task Force on Alzheimers Disease and Other Irreversible Dementias reported: Alzheimersfamily members ofien tell distressing stories about not knowing where to go for help, going from one service provider to another in a vain search for assistance, and being misinformed about the availability of services or eligibility for programs (918). Family caregivers told the task forces and committees in other States: I tried to ascertain just where and what I might do to get some help. My help came from a support group. Nobody else knew anything (599). After a 3-year search, I am just learning of the different resources that are available. Why didnt I know sooner (412)? We just scratched and dug on our own (531). Many of the services and resources are, indeed, available. They are not well publicized so people dont know where to go for help. As an educated person who is part of the health care system, I found it difficult to obtain help for my father. Someone older, more upset, or confused and not well versed in our system might have found it impossible (412). An adult day care provider told the Maryland Task Force: Families dont even know what to ask for and may go through a maze of blind alleys before help is obtained (696). The Texas Alzheimer Task Force concluded that: One of the greatest burdens of the family caregiver is the lack of knowledge of community resources and the ability to obtain these resources (790). This OTA report analyzes the problem families and others face in locating and arranging appropriate services for people with dementia and discusses Federal policy options for the development of a system to resolve the problem. This chapter provides an overview of the problem and discusses the factors that determine
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4 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias what kind of system is needed to link people with dementia to services, including the relevant characteristics of people with dementia, of their families and other informal caregivers (if they have any), and of the service environment. The chapter presents a framework, including the essential components and criteria, for an effective system to link people with dementia to services. It describes many of the public and private agencies, organizations, and individuals that currently help some people with dementia and their caregivers find services. Lastly, the chapter identifies and discusses Federal policy options with respect to the development of an effective system to link people with dementia to services. The policy options address questions such as whether the system should serve people with dementia exclusively or other people as well, whether the agencies or organizations that constitute the system should also be responsible for allocating services and funding for services, and whether those agencies or organizations should be designated by the Federal Government or by the States. In the abstract, the development of an effective system to link people with dementia to services seems far removed from the terrible personal losses associated with dementia for patients and their families. The need for such a system comes alive, however, for people who try to find appropriate services for a relative, friend, or client with dementia and confront the existing lack of accurate information about services and about funding for services and the often bewildering array of public and private agencies, individuals, funding sources, eligibility criteria, rules, and regulations that constitute the service environment in many communities. Although the need for an effective linking system is clear, establishing such a system will be difficult, in part because of turf issues. Many public and private agencies, organizations, individual health care and social service professionals, service providers, and others currently link some people with dementia to services and consider this function as part of their role. Designating certain agencies, organizations, or professional or provider groups to constitute a system to link people with dementia to services will engender resentment and resistance from the agencies, organizations, and professional and provider groups that are not chosen. One alternative is to designate a consortium of agencies and organizations to constitute the linking system in each community, but the process of creating and maintaining an effective consortium is not without its own difficulties. Given these obstacles, some people might argue that it is best not to try to establish an effective linking system. On the other hand, without such a system, some, and probably many, people with dementia will not be connected to appropriate services, and families and other informal caregivers, who already must bear the physical and emotional demands of caregiving, will continue to experience the frustration of not being able to obtain accurate information and assistance in locating and arranging services. Overview of the Problem Diseases that cause dementia destroy a persons ability to understand events and people in his or her environment and to plan for and take care of himself or herself. Alzheimers disease and many other diseases that cause dementia are progressive, so that over time the affected individual becomes less able to function independently and more dependent on others for care. Eventually, many people with dementia become so debilitated that they require total care, 24 hours a day, for the rest of their lives. As a dementia patients condition worsens, his or her family and friends are faced with severe emotional lossesloss of the person they knew and meaningful aspects of the relationship they had with that person. They are faced simultaneously with the persons need for supervision, physical care, and many other kinds of assistance to compensate for his or her lost abilities. Because people with dementia often live for many years after the onset of symptoms, the familys experience of emotional loss and the patients need for care are frequently prolonged.
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Chapter l-Summary and Overview l 5 Photo credit: Suzie Fitzhugh Alzheimers disease and many other dementing diseases destroy a persons ability to plan for and take care of herself or himself. As a dementia patients condition worsens, the person must depend increasingly on her or his family or friends for supervision, physical care, and many other kinds of assistance to compensate for her or his lost abilities. People with dementia who have no family or friends face alone their loss of memory and other cognitive functions and their decreasing ability to care for themselves independently. Although they manage on their own for a while, eventually they also need 24-hour care and supervision. Some diseases that cause dementia are reversible with available treatments, but most are not. A careful medical evaluation can identify reversible dementias and indicate appropriate treatment, but there is no known cure for Alzheimers disease or many of the other diseases that cause dementia. OTAs 1987 report stressed the importance of biomedical research to find ways to prevent or cure those diseases. That report concluded that such solutions are not likely in the near future. Until effective methods of prevention or cure are discovered, ways must be found to take care of people who suffer from the diseases. Formal services, including medical, nursing, and social services; adult day care; in-home,
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6 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias nursing home, and respite care; and legal and financial counseling, can lessen the physical and financial burden for families and others who are taking care of people with irreversible dementia l Good formal services-those that are appropriate to the needs of the person and his or her caregivers also may mitigate the potentially devastating emotional impact of dementia on the family, support the patients remaining abilities, and perhaps lessen the patients anxiety and suffering. As awareness of Alzheimers disease and other diseases that cause dementia has increased in the past few years, appropriate services have been developed in many communities. Such services are not available everywhere, however, and more services are needed in most communities. Where appropriate services are available, they are often expensive, especially when they are needed for prolonged periods. Public funding and private insurance coverage for them frequently are inadequate. Even if appropriate services are available and affordable or reimbursable through public programs or private insurance, families and others still may not be able to find them. This problem is, in part, due to the complexity and fragmentation of services at the community level. In many communities, health care, long-term care, social, and other services for people with dementia (and for people with other chronic conditions) are provided by numerous public and private agencies and individuals. The services are not coordinated, and the providers have different rules about whom they serve and what they offer. Public funding is available for some services through Federal, State, or local programs, but each program has complex regulations about who is eligible, what services are covered, who provides them, for how long, and in which settings. Since there is seldom any information about the quality of services provided by different agencies and individuals, families and others often have no basis for selecting one over another. Many families and others suffer, as a result. According to the Alzheimers Association: A recurring theme in the history of each familys problems is the difficulty experienced in finding both medical and social resources for the diagnosis, management, and, particularly, the care of the patient whose mind and body are failing (16). Physicians, other health care and social service professionals, service providers, and others refer some patients and their families to services and sometimes arrange services for them. Many public and private agencies and organizations provide information and referrals and case management to help people find services. The assistance provided by those individuals, agencies, and organizations meets the needs of some people with dementia and their families, but other patients and families do not get any assistance in locating and arranging services. Some families contact one agency after another in a haphazard, lengthy search for needed services. That process adds to the frustration of families who are already coping with the emotional losses associated with dementia and with the patients need for physical care and supervision. In the end, some patients do not receive any services, and some receive services that are not appropriate for their needs. For families and other informal caregivers, the problem of locating and arranging services is only one of the difficult aspects of caring for a person with dementia. Likewise, from a public policy perspective, the problem of locating and arranging services is only one of the problems that restrict access to appropriate services for people with dementia. Four other problems that restrict access to appropriate services are: l the lack of sufficient services, the lack of adequate funding for services, the lack of education and training for service providers, and the poor quality of some services. IS= ~ble 1-2 hter in this chapter for a list of the services that maybe needed for people witi dementia.
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Chapter l-Summary and Overview 7 The focus in this report on the problem of locating and arranging services is not intended to detract from the importance of the other four problems, all of which were discussed at length in OTAs 1987 report (831). Ideally, through the combined efforts of public and private agencies and organizations, high quality services provided by well-trained individuals and adequate funding for services would be available to all people with dementia. That outcome is unlikely, however, at least in the near future. Moreover, even if the other four problems were solved, the lack of effective methods of locating and arranging services would continue to restrict some peoples access to appropriate services. Evidence discussed later in this report indicates that high quality services may not always be used, even when funding is available. Some patients and families do not know about the services. Other patients and families may need help in defining their needs, understanding how the available services can help, and arranging services. Even if high quality services were available everywhere, the problem of access would not necessarily be solved for those people. In addition, an effective system to link people with dementia to services might help to resolve some of the other problems that restrict access. For example, precise information about service gaps often is a crucial factor in political and administrative decisions to establish or fund new services. If agencies that link people with dementia to services kept accurate records of the services that are needed but not available in their communities, that information might be used by policymakers to establish or fund new services. A system to link people with dementia to services might also play a role in improving quality of care. OTAs research indicates that most agencies that help people find services do not have formal procedures to evaluate the quality of services to which they refer people, but some agencies do have such procedures (see ch. 5). It is reasonable to expect that if agencies gave their clients information about the quality of available services or referred them only to service providers who met certain standards, over time providers would try to meet the standards, and quality of care would improve generally. This report considers whether a linking system should concern itself with the quality of services to which it refers people, and if so, how. The relationship between a linking system and funding for services is problematic. Many agencies that link people to services also help them find sources of funding for services. Public and private funding for services are not adequate, however. In 1988, 1989, and 1990, several bills were introduced in Congress to expand Federal funding for a variety of longterm care services. Provisions in most of the bills indicate that the agencies designated to administer the new benefits also would link people to services. Although the expanded funding for services proposed in the bills would benefit many people with dementia, it is not clear that the linking process proposed in the bills would meet their needs. In addition, some members of the advisory panel for this OTA study and other commentators are opposed to having the same agencies link people to services and administer or control funding for services. They fear that agencies that control funding for services may restrict, rather than facilitate, clients access to needed services in order to limit the cost of the services to the agency. Both those concerns are discussed later in this chapter. The issues of locating and arranging services, service availability, funding, provider education and training, and quality of care are interrelated. Some people might argue that one of the other issues is more important than locating and arranging services, and that limited public funds should be spent to create services, increase funding for services, support provider education and training, or improve quality rather than to develop an effective linking system. Clearly, however, better methods of linking people with dementia to services are necessary to ensure that they have access to appropriate care.
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8 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias Congressional Interest In recent years, with growing public awareness of and concern about Alzheimers disease and other diseases that cause dementia, Congress responded first by funding biomedical research. Federal funding for biomedical research on Alzheimers disease increased from less than $4 million in fiscal year 1976 to more than $140 million in fiscal year 1990. Federal funding for health services research also has increased, although much more slowly. Legislation to improve access to services is just beginning. In 1987, the reauthorization of the Older Americans Act (Public Law 100-175) included new in-home services for frail, elderly people and specifically designated people with Alzheimers disease and related disorders as eligible for the services. Each of the bills introduced in Congress in 1988, 1989, and 1990 to expand Federal funding for long-term care services defined eligibility for the services explicitly to include people with dementia. Most congressional attention has focused thus far on the issues of service availability and funding for services, however. Less attention has been paid to the question of how to link people with dementia to the services they need. The topic of this report spans many Federal programs and crosses the jurisdictional lines of several congressional committees. The study was requested by the Senate Committee on Labor and Human Resources, Senator Charles E. Grassley, the House Committee on Energy and Commerce, and the House Select Committee on Aging. OTA received letters of support for the study from the Senate Special Committee on Aging; Senator Frank H. Murkowski, ranking minority member of the Senate Committee on Veterans Affairs; the House Committee on Veterans Affairs; and Congresswoman Olympia J. Snowe. The primary concerns of the requesting committees and individual members of Congress were to improve access to appropriate services for people with dementia and to support family caregivers. The committees were particularly concerned about access problems in the Federal programs over which they have jurisdiction i.e., Medicare, Medicaid, Older Americans Act programs, and programs of the U.S. Department of Veterans Affairs. The requesters were also concerned about the complexity and fragmentation of services and the competing claims of different agencies and professional groups that each of them should be the designated case manager. The requesting committees asked OTA to identify methods of locating and arranging services that are successful in some localities and might serve as models for other localities. The requesters agreed that a publicly funded system to link people with dementia to services should support the efforts of private groups, not supplant them, and several requesters stressed the need to evaluate the role of voluntary organizations in the service delivery system. Locating Services for Mrs. D: A Case Example The true story of one familys efforts to locate and arrange services for a relative with dementia (Mrs. D) is related in box l-A. The process of finding services is different in every case: each person is different; some people with dementia do not have a family or other informal caregiver; families vary; and the number and type of service providers and the availability of public and private funding for services differ in every locality. Nevertheless, the experience of Mrs. D and her family contains some common themes and illustrates the impact on people of the fragmentation of services at the community level and the lack of an effective system. The story covers only a l-month period. Many families of people with dementia experience similar problems for years. Mrs. D has several advantages that many people with dementia do not have. She is not poor; she has a supportive family; and there are a substantial number of service providers and some public and private funding for services available to her. Despite those advantages, locating and arranging services for Mrs. D proved to be a difficult, frustrating process.
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Chapter 1--Summary and Overview l 9 Box 1-ALocating Services for Mrs. D On February 29,1988, Mrs. D, a 70-year-old widow, was hospitalized as a result of convulsions. She had been living alone in an apartment below the apartment of one of her three sons. The family knew that she was becoming confused, but when it turned out that the convulsions occurred because she mistakenly took too much of a prescribed diuretic medicine, they realized that she needed more supervision and assistance than she had been getting. One son who lives 300 miles away took leave from work, and he and his two brothers and their wives who live in the area began to work together on a plan for Mrs. D. Their father had died the year before, after 8 years in a nursing home, and they were determined to arrange care for her at home. On March 4th, while Mrs. D was still in the hospital, the hospital discharge planner gave the family a list of eight home care agencies in the area and suggested that they contact the local Medicaid office to determine whether Medicaid would pay for Mrs. Ds home care. One son called all the home care agencies. He was asked repeatedly whether he wanted a homemaker or a home health aide. When he inquired about the difference, he was told that a homemaker was cheaper than a home health aide, One agency said that homemakers do not touch the patient, whereas home health aides do. Other agencies said this distinction was not true of their homemakers and home health aides, but they did not offer a better explanation of the difference between homemakers and home health aides. The home care agencies quoted prices ranging from $7 to $12 an hour. Since Mrs. D needed supervision for as many as 16 hours a day, the cost could be$112 to $192 a day. Several agencies said they did not think Medicaid would pay for home care for her. Moreover, most of the agencies said that because of staff shortages, they could only try to find someone. The family finally chose the nonprofit home care agency, partly because it had the lowest prices. Arrangements were made for a home visit. One son contacted the Medicaid agency and was told that Medicaid might pay for a homemaker for up to 10 hours a day, 7 days a week. First, however, various procedures were needed to determine whether Mrs. Ds physical condition and functioning were sufficiently impaired to meet Medicaid requirements for home care and whether she was financially eligible for Medicaid. Her income was slightly above the State Medicaid limit, but as her sons understood it, if she used part of her income to pay for some home care services, Medicaid might cover the rest. On March 8th, the hospital called to say that Mrs. D was to be discharged that day. The family had expected she would be in the hospital at least 4 more days. One son called the doctor, who first said that Medicare would not pay for any more days in the hospital and that they had to take Mrs. D home immediately. The son argued that she had to stay at least 3 more days. Finally they agreed that she would be discharged in 2 days. In the meantime, one son called the county Office on Aging, an agency that serves as the local area agency on aging (AAA) and as such is federally mandated to ensure the availability of inf ormation and referral for elderly people. He was asked whether Mrs. D neededweatherization assistance or food stamps. When the answer was no to both questions, he was told that the Office on Aging could not help. The family continued to call every agency they heard about. They were repeatedly referred to the Office on Aging, and they called back once. That time, they got a completely different response, but again a response that was irrelevant to Mrs. Ds situation. Thus far, the family had not been given a diagnosis for Mrs. Ds confusion. Her primary physician had said: You know, it happens to all old people. She may improve. One son was convinced that she had an irreversible, dementing disease, but the other two sons accepted the doctors hopeful suggestion that she might improve. As the difficulty of arranging home care and the potential cost of the services became clearer to the family, the three sons argued with each other about whether the services were really needed and, if so, for how long. At a certain point, someone (the family cant remember who it was) suggested that they call the local senior center. The woman who answered the phone at the senior center said that the person they needed to talk to was out sick, and they would have to call back. She added however, that her mother had Alzheimers disease and that she knew of three adult day centers in the area that provided good care for people with dementia. She gave the family the name and telephone number of the one she thought was best. (continued on next page)
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10 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias Box 1-ALocating Services for Mrs. D-(continued) Mrs. Ds family had not considered adult day care for her and did not know much about it, but one son called. He talked to the director of recreation and volunteer programs who gave the impression immediat ely that he understood the problem, knew about dementia, and might be able to help. The son arranged to visit the day center and called the hospital to have Mrs. Ds records sent there so the center could decide whether to accept her. On March 10th, Mrs. D came home even though the arrangements for her care had not been settled. Her sons continued calling service providers. They found it was difficult to supervise and care for her and at the same time make calls to arrange services. In the next 2 days, eight different people came out to evaluate Mrs. D. Some came from the home care agency, and some came from the Medicaid agency. The sons did not understand exactly who any of these people were or how they related to each other. Mrs. D was very confused. She did not always recognize her son from out of town, who was staying with her. Frequently she got angry at him and at her daughter-in-law who lived in the apartment above her (whom she referred to as that governmen t lady upstairs) because they would not let her cook and do other things she wanted She liked all the visitors who came to evaluate her. Once she was home, it was clear to everyone that she should not be left alone. Some family members began to wonder whether home care was even possible. On March 12th, the son from out of town went home. The plan was that starting the next Monday, a home health aide paid by Medicaid would stay with Mrs. D seven days a week from 9:00 a.m. to 3:00 p.m. The family had hired another aide who would work from 3:00 to 9:00 p.m. and would be paid from Mrs. Ds income. The son and daughter-in-law in the apartment upstairs would watch out for her at night. An application for adult day care was pending. On March 14th, the first aide did not show up. It turned out she had quit the agency the previous Friday. The aide the family had hired privately came on time and worked out well. The next day an aide from the agency also came on time. The rest of that week went O.K. Mrs. D fired both aides frequently. The agency aide went to the daughter-in-law upstairs, who reassured her that Mrs. D needed help and told her that she should stay. The aide whom the family had hired turned out to be an easy going person with a lot of common sense; she didnt need to ask whether she should stay. At the end of the week, the adult day center said that Mrs. D could come there, 5 days a week, starting in 10 days. The aide from the agency misunderstood, thought the plan was starting sooner, and did not show up for work the next Monday, leaving Mrs. D alone. In the meantime, one of Mrs. Ds sons hired a college student to come in from 6:30 a.m. to 8:30 a.m., three mornings a week, because he was afraid that she was not safe alone then. The adult day center has a grant for some of its costs, and clients are not required to pay a fee, but they are encouraged to contribute. Mrs. Ds family was told that her contribution would be $15 a day. The center could not provide transportation for Mrs. D. They have plans to purchase a bus in the future to pick up clients, but they do not expect to pick people up from as far away as Mrs. Ds apartment. Medicaid can pay for transportation to the doctor and the hospital but not to the adult day center because, according to Medicaid regulations, it is a "social day center," Medicaid could pay for transportation to a center that it defined as a "medical day center. Mrs. Ds family pointed out to the Medicaid case worker that Medicaid was paying the home care agency $11 an hour for an aide from 9:00 a.m. to 3:00 p.m. (although the aide got only $4.50) and that the adult day care would cost Medicaid nothing. The worker said that Medicaids regulations on social day centers and medical day centers were firm and that no exception could be made in this case. Luckily, the aide that the family was paying privately said she would come every morning, get Mrs. D ready, take her to day care, and bring her home again in the afternoon, The family was paying her $7 an hour. Medicaid agreed to pay for another aide for 10 hours a day on weekends. As of March 25th, the family was confident that the adult day center would provide good care. Since it is affiliated with a nursing home, they believed that she had one foot in the door there if she eventually needed nursing home care. They hoped the private aide they found would stick with the job. They were worried about Mrs. D at night, and for a few days they worried about what to do if she refused to go to the adult day center. Then they decided that she just didnt have that choice. SOURCE: Office of Technology Assessment, 1990.
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Chapter 1--Summary and Overview l 11 FACTORS THAT DETERMINE THE KIND OF SYSTEM THAT IS NEEDED TO LINK PEOPLE WITH DEMENTIA TO SERVICES In addressing the question of how to link people with dementia to appropriate services, OTA made no assumptions about what kind of system would be needed. By system, in this context, OTA means a group of interacting agencies and/or organizations that form a network that serves the common purpose of linking people with dementia to services. The system does not necessarily have to be federally administered, nor does it have to be implemented by a single category of agencies nationwide. OTAs staff and the advisory panel for the study considered many possible systems, ranging from a relatively simple telephone information and referral system that would refer families and others to needed services to a comprehensive service system that would not only locate and arrange but also provide and pay for many of the services a person with dementia might need. The staff and advisory panel also considered whether the system-of whatever kind should serve people with dementia exclusively or people with dementia and people with other diseases and conditions as well. OTA concluded that three factors determine the kind of system that is needed to link people with dementia to services: l l l the characteristics and service needs of people with dementia; the characteristics of their families or other informal caregivers (if they have any); and the characteristics of the service environment, including the number and type of agencies and individuals that provide services in a community and the sources of public and private funding for services. The following discussion presents some general information about dementia and about each of the three factors that is relevant to determining what kind of system is needed to link people with dementia to services. Although the discussion identifies some common characteristics of patients, families, and service environments, it gives equal emphasis to their heterogeneity, since an effective system to link people with dementia to services must be responsive to their diverse needs and situations. Characteristics and Care Needs of People With Dementia On the basis of a 1985 review of epidemiologic studies, OTA estimates that there are now about 1.8 million Americans who have severe dementia: that is, they are so incapacitated that others must care for them continually (152). OTA estimates that an additional 1 million to 5 million Americans have mild or moderate dementia. The prevalence of dementia increases with age. The 1985 review of epidemiologic studies found that the prevalence of severe dementia increases from less than 1 percent of people under age 65, to about 1 percent of those age 65 to 74, 7 percent of those age 75 to 84, and 25 percent of those over age 85 (152). Because of the aging of the U.S. population, the number of people with dementia will increase dramatically in coming decades. Diseases That Cause Dementia Dementia is a clinical syndrome characterized by the decline of mental functions in an alert individual. It can be caused by more than 70 diseases and conditions, including the following: progressive degenerative diseases, including those in which dementia is inevitable, such as Alzheimers disease and Picks disease, and those in which dementia may or may not occur, such as amyotrophic lateral sclerosis (ALS) and Parkinsons and Huntingtons diseases; cardiovascular diseases that decrease blood supply to the brain: this can cause loss of brain tissue in the form of many small strokes (multi-infarct dementia) or one or more large strokes; bleeding into the brain,
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12 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias usually related to hypertension, can also cause loss of brain tissue; severe depression; intoxication caused by prescription and nonprescription drugs and alcohol; infections that affect the brain, including Creutzfeldt-Jakob Disease and acquired immunodeficiency syndrome (AIDS); metabolic disorders; nutritional disorders; normal pressure hydrocephalus; and space-occupying lesions, such as brain tumors and subdural hematoma (847). Alzheimers disease is by far the most common cause of dementia. A study of noninstitutionalized individuals over age 65 in East Boston, Massachusetts, found that 91 percent of the individuals who had moderate or severe dementia had Alzheimers disease, including 84 percent who had only Alzheimers disease and 7 percent who had Alzheimers disease plus another dementing illness (192). 2 Less than 5 percent had dementia caused by cardiovascular disease. The extent to which these findings from the East Boston study can be extrapolated to the population as a whole is unclear. Prior to the release of the findings from East Boston, other researchers had estimated that Alzheimers disease accounted for only 50 to 60 percent of all cases of dementia, and that cardiovascular diseases accounted for 10 to 20 percent of all cases of dementia (399,794). Many researchers and clinicians have noted that Alzheimers and other diseases that cause dementia coexist in some people (399,554,704,794). Dementia in people with AIDS has received considerable attention from researchers, clinicians, and the media. Although prevalence estimates vary, researchers agree that most AIDS patients develop dementia at some time in the course of their illness (590,654). People with AIDS dementia face many of the same problems in locating appropriate services as people with other dementing diseases and some additional problems as well. This report does not address the difficult problems in locating services that confront AIDS patients specifically. This reports main focus is on problems in locating and arranging services for people with Alzheimers disease and other dementing diseases that primarily affect elderly people. Accurate identification of the disease that is causing dementia in an individual often is difficult, however. In Alzheimers and some other dementing diseases, a diagnosis can only be confirmed with certainty by an autopsy after the patients death (847). Diagnostic accuracy for Alzheimers disease (confirmed by autopsy) approaches 90 percent in some specialized centers but is lower in other settings (226,400,831). Because of the lack of certainty about diagnosis in many cases, this report uses the generic phrase people with dementia except in describing research or programs that target people with a specific disease usually Alzheimers. Cognitive and Self-Care Deficits By definition, dementia involves some degree of memory loss. Other cognitive abilities frequently diminished or lost in dementia include intelligence, learning ability, problem solving, judgment, comprehension, attention, and orientation to time and place and to oneself. Language abilities, including the ability to express oneself meaningfully and to understand what others communicate, usually also are affected. Researchers and clinicians have described a general progression of cognitive losses that typifies Alzheimers disease and other primary degenerative dementias (339,51 1,710,711). It is important to note, however, that individuals with primary degenerative dementias vary in the ZW Smdy in wt Boston iI.NOIVd admini5tel-ing a brief memo~ test to 3,623 noninstitutionalkxl individuals over age 65 and then providing a comprehensive evaluation for 467 of those individuals, including 170 individuals who had performed well on the brief memory test 101 individuals who had performed at an intermediate level on the test, and 196 individuals who had performed poorly on the test (192). Based on an analysis of the results of the comprehensive evaluations, the researchers concluded that at least 10.3 percent of all people overage 65 have Alzheimers disease, including 3 percent of those age 65 to 74, 18.7 percent of those age 75 to 84, and 47.2 percent of those over age 85. Extrapolating to the population as a whole, these figures suggest that them are now about 4 mi~on people with Alzheimers disease in the United States. The prevalence of severe, moderate, and mild dementia due to Alxheimers disease cannot be ascertained from the East Boston data.
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Chapter 1 Summary and Overview l 13 rate and order in which cognitive losses occur (62,77). Individuals with multi-infarct and other dementing diseases also vary in the type, progression, and ultimate seventy of their cognitive losses. Because of these variations and because, at any one time, individuals with dementia are at different points in their disease, people to be served by a linking system will differ greatly in the type and overall severity of their cognitive deficits. People with dementia also differ in their self-care abilities. Variations in self-care abilities reflect, in part, the type and severity of individuals cognitive deficits, their remaining cognitive abilities, and coexisting physical or emotional conditions. Cognitive deficits due to dementia often limit a persons ability to perform activities such as shopping, cleaning, cooking, using a telephone, and handling money, which are often referred to as instrumental activities of daily living (IADLs). As the persons cognitive deficits increase, the person also may become unable to independently perform personal care activities, such as bathing, dressing, or using the toilet, which are often called activities of daily living (ADLs). The person may forget how to perform any of the activities or even that they are necessary. Many dementing diseases cause neurological changes that create movement and gait disorders, swallowing disorders, speech impairments, and similar conditions that also limit a persons self-care abilities. Variations in self-care abilities also relate to environmental factors; for example, some people with dementia can perform certain activities in a familiar environment but not an unfamiliar one. Thus, the individuals to be served by a linking system will vary in the type and overall severity of their self-care deficits. Self-care deficits generally increase as the severity of a persons cognitive deficits increase (217,293,787), but the correlation between the two is not exact. Some people with significant cognitive deficits are independent in self-care activities, and others with mild cognitive deficits have significant self-care deficits (760,895, 913). Psychiatric and Behavioral Problems Depression and other psychiatric and behavioral problems are common in people with dementia. Depression can cause dementia or co-exist with another dementing disorder. Differential diagnosis is difficult in such cases, but research indicates that one-fifth to one-third of people with Alzheimers or another dementing disease have coexisting depression (695,704, 705). Depression in people with dementia generally responds well to treatment (usually antidepressant medications) (444,512,682,705). If a persons cognitive deficit is due only to depression, his or her normal cognitive status may be restored with treatment. If the depression coexists with another dementing disorder, treatment usually does not improve the persons cognitive status. Often, however, it improves the persons mood and functioning-important considerations from the point of view of families and other caregivers (680,697). Other psychiatric disorders that occur in some people with dementia are: l l l l suspiciousness and paranoia, identified in one-fourth to one-half of people with Alzheimers disease (295,429,525,681,728, 787); visual and auditory hallucinations, found in at least one-fourth of people with Alzheimers and other dementing diseases (242,525,681,728,787); withdrawal and reduced emotional responsiveness, found in three-quarters of the people with Alzheimers disease in one study (729); and agitation and restlessness, found in 24 to 89 percent of people with dementia, depending on the study (242,479,729,787). Behavioral problems that occur in some people with dementia are wandering, hitting, severe emotional outbursts, and disruptiveness at night (295,479,681). Not all people with dementia have behavioral problems, but when such problems occur, they often cause anxiety,
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14 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias embarrassment, fear, anger, and exhaustion for families and other caregivers. Even if the disease that causes a persons dementia cannot be cured, psychiatric disorders and behavioral problems associated with it usually can be alleviated with changes in the persons daily activities, modifications to his or her environment, training for caregivers in how to respond, medications, and in some cases, counseling and relaxation therapies for the patient. Coexisting Medical Conditions Many people with dementia have other medical conditions unrelated or only peripherally related to their dementing disease (71,21 1,479, 921). A random sample of people with dementia served by a community mental health center in Washington State, found, for example, that they had an average of more than three co-existing medical conditions. A third or more of the people had cardiac or vascular conditions, arthritis, and/or visual or hearing impairments (see table l-l). Any coexisting medical condition can exacerbate a dementia patients cognitive and self-care deficits and complicate his or her care. Conversely, treatment of the condition can maintain or restore the persons physical health and maximize his or her functioning (74,487,680,908,915). People With Dementia Who Live Alone Most studies of people with dementia show that virtually all such people live either in the community with someone else or in a nursing home or other residential care facility (see, for example, Friss, 1989 (235); George, 1983 (242); Lusky et al., 1988 (479)). At the start of this assessment, OTA assumed that very few people with dementia were living alone and that those few probably were not severely cognitively impaired. OTA also assumed that a linking system would interact primarily with family members and other informal caregivers and should be designed to respond to their needs. Table 1-1--Coexisting Medical Conditions in 100 People With Dementia Served by the Community Mental Health Center in Spokane, Washington, 1988 Percent of people Illness/Condition affected Cardiac . . . . . . . . . Vascular . . . . . . . . Hypertension . . . . . . . Stroke . . . . . . . . . Arthritis . . . . . . . . Vision impairment. . . . . . . Cataracts . . . . . . . . Glaucoma . . . . . . . . Hearing impairment . . . . . . Speech impairment . . . . . . Stomach ulcer . . . . . . . Chronic obstructive pulmonary disease . . Cancer . . . . . . . . Diabetes . . . . . . . . Hernia. . . . . . . . . . Parkinsons disease . . . . . . Seizures . . . . . . . . Osteoporosis/kyphosis. . . . . . Urinary tract infection . . . . . . Thyroid . . . . . . . . Prostate . . . . . . . . Diverticulitis . . . . . . . All others . . . . . . . . None . . . . . . . . . Unknown . . . . . . . . 40% 31 34 26 37 50 30 10 34 19 14 12 11 11 10 9 9 8 8 5 5 5 12 7 2 SOURCE: R. Raschko, director, Elderly Services, Spokane Community Mental Health Center, Spokane, WA, letter to the Office of Technology Assessment, U.S. Congress, Washington, DO, Mar. 8, 1988. All those assumptions were wrong. The studies that show very small proportions of people with dementia living alone are based on interviews with family members and other informal caregivers. OTAs review of populationbased studies and studies that focus on patients rather than caregivers shows that at least 20 percent of people with dementia live alone and that some of them are severely impaired. The Epidemiologic Catchment Area (ECA) Survey, a large-scale, population-based study conducted in five sites in the early 1980s, found that 24 percent of people with severe cognitive impairment were living alone. 3 The proportion varied considerably among sites, from 15 percent in New Haven, Connecticut to 44 percent in Durham, North Carolina (842). Twenty-one percent of people with dementia who were seen at the six California Alzheimers Disease DiagSsmme co~tive ~~ent Ww defm~ in tie smey as a score of 17 or less on the Mini-Mental State ~ tion (218). By tbat deftitio~ the prevalence of severe cognitive impairment at the five sites averaged 1.3 percent in people over age 18 (range: 1.2 to 3.3 percent) (842).
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Chapter 1-Summary and Overview 15 nostic and Treatment Centers in 1985, 1986, and 1987 lived alone (225,227). Among people served by the National Channeling Demonstration Project, 24 percent of those with severe dementia and 33 percent of those with moderate dementia lived alone (149). Except for anecdotes, very little information is available about people with dementia who live alone. Data on 100 people with dementia who were receiving services from a community mental health center in Washington State in 1989, show that those who lived alone were somewhat less functionally impaired than those who lived with a caregiver: 80 percent of those who lived alone had limitations in ADLs, compared to 96 percent of those who lived with a caregiver. However, those who lived alone were older; their income was lower; and they had been receiving services from the community mental health center for a longer period (687). No data are available to compare the mental status of people in the two groups. The large proportion of people with dementia who live alone is surprising. Some people with dementia who live alone have someone to help theman important consideration with respect to both their service needs and the kind of system that is needed to link them to services. Among the 100 people with dementia who were receiving services from the community mental health center in Washington State, half of those who lived alone had an involved relative or friend (687). Extrapolating from those data and OTAs estimate that at least 20 percent of people with dementia live alone, one could hypothesize that at least 10 percent of all people with dementia live alone and have no one to help them. Some support for that hypothesis comes from data on people with dementia seen at the six California Alzheimers Disease Diagnostic and Treatment Centers in 1987, 10 percent of whom had no relative or friend to help them (227). OTA is not aware of any other sources of data on this issue. Service Needs of People With Dementia Because of their cognitive and self-care deficits and psychiatric and behavioral problems (if any) people with dementia generally need supervision and assistance with many different kinds of activities. Families, friends, and others usually provide this care informally, but they cannot always provide all the assistance the person needs, and some people with dementia do not have anyone to care for them informally. People with dementia also need professional and specialized services that informal caregivers generally cannot provide. Table 1-2 lists the many different kinds of services that may be needed for people with dementia and their families or other informal caregivers. Not all the services are needed for any one patient. Patients and caregivers needs change over time, however, and individual patients may need many of the services sometime in the course of their illness. All the services listed in table 1-2 also are used for nondemented people with physical impairments. The cognitive deficits of people with dementia alter the nature of the services they need, however. Providing medical care, legal services, personal care, or other services for a demented person is quite different from providing the same services for a nondemented person, in part because the demented person often is unable to understand or cooperate with the provider. For that reason, even vision and dental care may be different for demented people. Various providers also differ in their knowledge about dementia and are more or less skilled in working with people with dementia. Implications for an Effective System To Link People With Dementia to Services Because of their diverse service needs, an effective system to link people with dementia to services must be able to refer them to many different kinds of health care, long-term care, social, and other services ideally, to all the services listed in table 1-2provided those services are available in the persons commu-
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16 l confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias Table 1-2-Services That May Be Needed for People With Dementia and Their Families Most of these services maybe needed by and can be provided for patients who are living at home, in a nursing home, or in another residential care facility, such as a board and care facility, adult foster home, or sheltered housing. Diagnosis Acute medical care Ongoing medical supervision Treatment of coexisting medical conditions Medication and elimination of drugs that cause excess disability Multidimensional assessment Skilled nursing Physical therapy Occupational therapy Speech therapy Adult day care Respite Care a Family/caregiver education and training Family/caregiver counseling Family support groups Patient counseling Legal services Financial/benefits counseling Mental health services Protective services Supervision Home health aide Homemaker Personal care Paid companion/sitter Shopping Home-delivered meals Chore services Telephone reassurance Personal emergency response system Recreation/exercise Transportation Escort service Special equipment (ramps, hospital bed, geri-chair, etc.) Vision care Audiology Dental care Nutrition counseling Hospice Autopsy a Respite care includes any service intended to provide temporary relief for the primary caregiver. When used for that purpose, homemaker, paid companion/sitter, adult day care, temporary nursing home care, and other services included on the list constitute respite care. SOURCE: Office of Technology Assessment, 1990. nity. A linking system also should be able to refer people with dementia to service providers who are knowledgeable about dementia and skilled in working with people with dementia, again, provided there are such providers in the community. As noted earlier, many people with dementia have co-existing medical conditions unrelated or only peripherally related to their dementia. Since it is the whole personnot just his or her dementiathat is linked to services, the system should be able to refer patients to services or sources of information about services for co-existing medical conditions as well. Certain services are needed early in the course of a patients illness. An accurate diagnosis should be obtained as early as possible, both to identify reversible dementias and to let patients, families, and others know what is causing the persons cognitive and self-care deficits and psychiatric and behavioral problems, if any. Legal services also are needed early in the course of progressive dementing diseases, while patients still are able to make decisions about their property and future care and to execute legal documents (e.g., wills, trusts, durable powers of attorney, and living wills) that express their wishes on these matters. A linking system should be able to inform people with dementia, their families, and others about the importance of accurate diagnosis and early legal counseling. To do so, the system has to be in contact with them early in the course of the patients disease. Families and others often are not aware that the psychiatric and behavioral problems associated with dementia may be treatable, even if the underlying disease that causes the dementia cannot be cured. Likewise, they may not be aware of the impact of treatable coexisting medical conditions on the persons cognitive and self-care abilities. A linking system should take an active role in informing people that those problems and conditions may be treatable and should encourage them to seek appropriate treatment. Dementia patients characteristics affect not only the kinds of services to which a linking system must be able to refer them and the timing of the referrals but also many aspects of the linking process itself. Patients cognitive deficits complicate the linking process, making it more difficult to connect demented than nondemented people to services. For example, people with dementia are far less likely than nondemented elderly and disabled people to refer themselves for services. People with dementia often are unaware of their own limitations and do not realize they need services. They are unlikely to be able to arrange or participate in arranging services for themselves, to remember service arrangements that have been made for them, or to remember and report problems with the services they receive (934). People with dementia who live alone present a difficult challenge to anyone trying to locate and arrange services for them. Case managers interviewed for this OTA study said that such
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Chapter l-Summary and Overview l 17 Photo credit: Eastern Area Agency on Aging A linking system must be available to people with dementia and their families early in the course of the patients disease to inform them about the importance of obtaining an accurate diagnosis and early legal counseling. people require more services and greater involvement of the case manager than people with dementia who live with a caregiver (see ch. 3). As noted above, some people with dementia who live alone have a relative or friend who helps them. People with dementia who live alone, and have no relative or friend to help them often are physically and emotionally isolated, fearful, and suspicious. They may be the most difficult patients to link to appropriate services. They also may be the most in need of services. To be effective, a linking system must have methods of reaching and working with them, as well as with patients who have an an informal caregiver to help them. Many decisions are involved in the process of linking people with dementia to services, including decisions about what services are needed, who will provide them, who will pay for them, and, perhaps most importantly, whether the patient will be cared for at home or in a nursing home or other residential care facility. Because of their cognitive deficits, people with dementia may not be able to make those decisions for themselves, thus raising difficult questions about who should make the decisions and on what basis. Some people with dementia retain sufficient cognitive abilities to make decisions about services for themselves, but their decisionmaking capacity is likely to be uncertain and fluctuating (see ch. 4). Regardless of who ultimately makes the decisions, patients cognitive deficits complicate decisionmaking in the linking process. Lastly, the prevalence of co-existing medical conditions among people with dementia has implications for how they, their families, and others perceive their problem and service needs and how they are likely to enter the service system. For the purposes of this discussion, one could imagine a continuum of people with dementia that extends from a person who has dementia and no co-existing medical problems at one end to a person who has one or more serious medical problems and (often unnoticed) dementia at the other end. The latter typea person with serious medical problems and unnoticed dementiais exemplified in the findings of two studies. One study concerned people who were hospitalized following a heart attack or heart surgery (53). Although all the subjects were considered free of any dementing illness, the researchers found that 40 percent had significant memory impairment and disorientation, and another 30 percent had milder cognitive deficits. Another study that concerned people hospitalized following hip fractures also found that 40 percent had significant cognitive deficits (67). These patients were in an acute medical care setting and had obvious medical care needs. If they continued to be cognitively impaired at the time of hospital discharge, appropriate planning for their posthospital care would require taking their cognitive status into account. This would mean raising questions about whether the patients could comply with treatment recommendations (e.g., medication schedules and rehabilitation procedures) and whether the patients who had previously lived alone could safely continue to do SO. Patients such as those in the two studies just mentioned would benefit from a linking system that is skilled in working with people with dementia. On the other hand, since their cognitive deficits were not identified by hospital staff,
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18 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias it is unlikely these patients would have been referred to a linking system designated to serve people with dementia exclusively if such a system existed. Hospitalized patients with unrecognized dementia represent one extreme on the continuum. OTA does not know how many such patients there are. In the middle of the continuum are people who have an identified dementing disease and co-existing medical conditions. From the perspective of this assessment, they would be categorized as people with dementia. In contrast, some families, physicians, and others would categorize them in terms of their other medical conditions and regard the dementia (if noted at all) as a complicating factor in the treatment of those conditions. How families, physicians, and others perceive people with dementia determines to a great extent how they enter the service system. It also determines the type of agency or individual a patient or family will approach, be referred to, or accept assistance from in finding services. If a linking system is designated to serve people with dementia exclusively, it is unlikely to be used for those who have a dementing disease but are not perceived by their families, physicians, or others as people with dementia. Characteristics of Families and Other Informal Caregivers Families, friends, neighbors, and others provide care informally for most people with dementia, and many families and other informal caregivers also link people with dementia to services (85,1 99,479,749). They may contact an information and referral or case management agency or contact service providers directly to arrange services. Other caregivers are unable to arrange services themselves. In either case, the characteristics of families and other informal caregivers affect the linking process, and understanding those characteristics is essential for determining what kind of system is needed to link people with dementia to services. Photo credit: Cleveland Chapter of the Alzheimers Assoaciation Families and others who do not think of the person they are oaring for as a person with dementia are unlikely to turn for help to a linking system that is designated to serve people with dementia exclusively. Who Are the Informal Caregivers? Informal caregivers of people with dementia are diverse. They vary with respect to their age, sex, and relationship to the patient; whether they live with the patient; their socioeconomic status; their educational, ethnic, and cultural background; their work and other caregiving responsibilities; and many less easily documented factors, such as the quality of their relationship with the patient and their attitudes about caregiving and the use of services. No national data are available on the characteristics of informal care givers of people with dementia. One study in North Carolina of 501 caregivers of people with dementia found that 54 percent were spouses, 33 percent were adult children of the patient, 10 percent were siblings or other relatives, and 1 percent were friends (242). The caregivers ranged in age from 21 to 90, with an average age of 58. Seventy percent were women.
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Chapter l-Summary and Overview l 19 Some families care for more than one impaired person. A study of middle-aged women who were caring for their elderly mothers found that one-fourth also were assisting another elderly relative (83). The study described a couple in their early 30s, about to have their first child, who were caring for the wifes terminally ill mother and the confused grandmother for whom the mother had been caring. Some people with dementia have several caregivers. Often, a primary caregiver provides most of the physical care and supervision, while other relatives and friends help out occasionally. These secondary caregivers frequently help to locate and arrange services (199,749). For that reason, patients who have a secondary caregiver maybe more likely than other patients to receive services (483). Although many informal caregivers are healthy and most are cognitively normal, some are physically frail, and some are almost as confused as the person they are assisting. One spouse or sibling who has been taking care of the other spouse or sibling for some time may become physically or cognitively impaired, or both. In that event, a linking system is confronted with the difficult task of arranging services for two impaired people living together, in effect, without a caregiver. Employed CaregiversAt least one-third of caregivers of people with dementia are employed, full or part-time (242,448,655). Interviews with employed caregivers of demented and nondemented people and their employers indicate that caregiving and job responsibilities frequently conflict. Even if caregivers can arrange daytime care for the patient, they need to call service providers, take the patient to appointments, and go to government offices to apply for benefits during work hours. Worry about the patient also interferes with their productivity (198,233,443,603,797). Employed caregivers of elderly people indicate that one of their greatest needs is for information about available services and sources of funding for services (443). A study that compared employed caregivers of cognitively impaired v. physically impaired elderly people found that the caregivers of the cognitively impaired people were more likely than the caregivers of the physically impaired people to express a need for information about services (740a). To be effective, a linking system must be accessible to employed caregivers and be responsive to their needs. Long-Distance CaregiversMany American families are geographically separated. The adult children or other relatives of a person with dementia may live far away but still try to function as long-distance caregivers. Little is known about long-distance caregivers of people with dementia. Commentaries on long-distance caregivers of elderly people in general indicate that they face extreme difficulties in trying to arrange and monitor services for a relative in another community (17,1 16,188). Such problems probably are more severe when the elderly person has dementia and cannot provide accurate information about his or her condition or monitor the services he or she receives. To be accessible to long-distance caregivers, a linking system must be identifiable in some uniform way nationally so that caregivers know who to contact for assistance. Ethnic Minority CaregiversEthnic minority caregivers differ from each other in many ways, but there are some characteristics and attitudes that occur more frequently in ethnic minority groups than other societal groups and have implications for the kind of linking system that would meet their needs. The most obvious example is language differences. A linking system must be able to communicate with caregivers in a language they understand well because the details and decisions involved in locating and arranging services are both complex and emotionally loaded (866). More subtle differences are perceptions of dementia (e.g., whether it is seen as an illness, a part of normal aging, or craziness and attitudes about the use of services, both of which are influenced by each groups cultural heritage, beliefs, traditions, and customs. The special aspects of
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20 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias linking ethnic minority people with dementia and their caregivers to services are discussed later in this chapter. Informal Caregivers of Nursing Home Residents With DementiaMany informal caregivers continue to regard themselves as the primary caregiver after their relative or friend with dementia is admitted to a nursing home (198,244). Some visit daily and assist with personal care. Many continue to arrange medical and other services and to handle the persons financial affairs. Some try to arrange in-home services that would allow them to bring the person home. Thus, relatives and friends of nursing home residents with dementia are likely to continue to need and use a linking system. Caregivers Experience of Burden Taking care of a person with cognitive and self-care deficits and psychiatric and behavioral problems can be exceedingly difficult. Having to watch the persons inevitable deterioration compounds the caregivers distress. For these reasons, the family of a person with dementia is often the second victim of the disease. Caregiver burden has been described in terms of: l l l objective patient characteristics and behaviors that create demands on the caregiver; the caregivers subjective experience of those demands; and the objective impact of caregiving on the physical and mental health, social participation, and financial status of the caregiver (932). Patient characteristics and behaviors that are particularly burdensome for some caregivers include incontinence, severe functional impairments, hallucinations, suspiciousness, agitation, wandering, catastrophic emotional reactions, disruptiveness at night, behaviors dangerous to the patient or others, and the patients need for constant supervision (125,295,681,938). Not all caregivers experience those characteristics and behaviors as burdensome, however, and there is a surprising lack of correlation between patient characteristics and behaviors and the caregivers subjective experience of them (244,643,668,938). Some caregivers subjective experience of burden is less than might be expected given the objectively difficult situations they face (291,937). Moreover, many caregivers have positive feelings about caregiving and pride in their ability to manage difficult caregiving situations (125,242, 448,643). To note those positive feelings and the lack of correlation between patient characteristics and behaviors and caregivers subjective feelings of burden is not to minimize the problems faced by caregivers. In fact, informal caregivers of people with dementia experience more subjective feelings of burden and more negative consequences of caregiving (e.g., increased use of alcohol and psychotropic drugs, reduced immune function, and reduced participation in social activities than caregivers of other elderly people or other comparison groups) (71,242,291,296,41 1,415, 610,612,740a). The discussion here is intended only to highlight the complexity and diversity of caregivers subjective experience of the demands of caregiving. Anecdotal evidence suggests that the individuals who link people with dementia to services are not always aware of that complexity and diversity. For example, a physician, nurse, social worker, or other individual may observe a patient with severe cognitive and self-care deficits and frequent behavioral problems, assume the family is experiencing intolerable burden, and determine that nursing home placement is the only service option. The family, on the other hand, may feel that they are managing relatively well and may just want some respite care. When confronted with a recommendation for nursing home placement, the family may conclude that the individual making the recommendation does not understand, and the family may withdraw completely. As a result, the opportunity to link the patient and family to appropriate services is lost (see ch. 3).
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Chapter l-Summary and Overview l 21 Photo credit: Bill Adams Taking care of a person with dementia can be exceedingly difficult. Nevertheless, many caregivers have positive feelings about caregiving and pride in their ability to manage difficult caregiving situations. The opposite situation may also occur. A physician, nurse, social worker, or other individual may observe a patient with mild cognitive, self-care, and behavioral problems and assume wrongly that the family is not experiencing burden. If the patient and family are not linked to appropriate services, however, the patient may be at risk of inadequate care. Many factors mediate between patient characteristics and behaviors that create demands on a caregiver and the caregivers subjective experience of burden. Some of those factors are unchangeable (e.g., the age and sex of the caregiver), but other factors sometimes can be changed. One such factor is the caregivers appraisal of the patients characteristics and behaviors (297,487,533,938). Caregivers who view a patients memory and behavioral problems as a direct consequence of a disease generally are less bothered by them than caregivers who view the same problems as in the patients control, saying, for example: If she paid attention, she wouldnt be so forgetful, or He just does that to annoy me (88). Education for caregivers about dementing diseases and their likely effects may lead to reappraisal of some problems and reduction in caregivers experience of burden. Coping mechanisms, such as seeking information, problem solving, and emphasizing positive feelings can also reduce subjective feelings of burden for some caregivers (88,295,610,938). Caregiver training and counseling can help some people increase their coping skills. Family support groups often give caregivers new ideas about how to solve or minimize problems and support to try those ideas (487,938). Finally, social support provided by relatives, friends, church groups, and voluntary associations may reduce a primary caregivers experience of burden (242,297,610,749,937). Family group meetings that involve other relatives and provide information about a patients disease and its expected impact can sometimes reduce the primary caregivers sense of isolation and increase the emotional support and practical assistance he or she receives (487,936). Implications for an Effective System To Link People With Dementia to Services To be effective, a linking system must be accessible to all kinds of informal caregivers and responsive to their diverse needs, including both the needs of caregivers who are as capable of locating and arranging services as any case manager and only need an accurate list of available services and the needs of caregivers who are completely incapable of locating and arranging services and are almost as impaired as the patient. The system also must be responsive to differences among caregivers in their subjective experience of caregiving. Lastly, a linking system must be aware of the potentially modifiable factors that affect caregivers subjective experience of burden (i.e., their appraisal of patient characteristics and behavioral problems, their coping mechanisms, and available social supports). Interventions to modify those factors may reduce the caregivers subjective experience of burden-a worthwhile end in itselfand change caregivers views about the kinds of help they need to care for the
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22 l confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias patient-an important consideration for a system that is intended to link people with dementia to appropriate services. Some agencies that link people with dementia to services provide caregiver education, training, counseling, and support services that may modify those factors. Other agencies refer caregivers for such services. In either case, a linking system must recognize the importance of the services, or caregivers will not receive them. Characteristics of the Service Environment The kind of system that is needed to link people with dementia to services depends not only on the characteristics of patients and their informal caregivers but also on what services and sources of funding for services exist in a community. If sufficient services and funding and accurate information about both were available, the number of people who would need help to obtain services would be relatively small, although some, and perhaps many, people still would need help in defining the patients needs, overcoming their own reluctance to accept help, and arranging services. At the other extreme, if there were no formal services or funding for services in a community, the functions of a linking system would be limited to helping people define their needs and mobilizing relatives, friends, and other informal resources to meet those needs. The reality in most communities is that there are some (although usually not enough) services and sources of funding for services, and accurate information about them often is not available. As a result, many patients and families need help not only to define their service needs but also to understand what services and funding are available and to locate and arrange available services and funding. Types of Agencies and Individuals That May Provide Services for People With Dementia In any given community, the kinds of services that may be needed for people with dementia may be provided by many different types of agencies and individuals. This is not to say that all the services are available, but that if they are available, they may be available from any of a great variety of agencies and individuals. Individual service providers include professionals in private practice (physicians, lawyers, nurses, social workers, psychologists, occupational therapists, physical therapists, speech therapists, audiologists, dentists, and dietitians), paraprofessionals, and nonprofessionals who provide homemaker, transportation, chore, and other services. In some communities, the needed services are provided by public agencies. State departments of health, human resources, aging, social services, mental health, and public welfare or public assistance may provide some of the needed services through regional and local offices. Counties and other local governments provide some of the needed services through local health care, social service, and mental health agencies. Some local governments have community service councils, health coordinating councils, and community action programs that provide some of the services. The U.S. Department of Veterans Affairs (VA) provides some of the services for eligible veterans, primarily through its 172 medical centers (see ch. 6). The U.S. Department of Defense provides some of the services for eligible military personnel and their dependents in military hospitals and clinics. Hospitals and clinics of the Public Health Service and the Indian Health Service also provide some of the services for eligible people. Area agencies on aging (AAAs), community mental health agencies, community health agencies, adult day centers, home health agencies, homemaker, chore, respite, and transportation service agencies, and senior centers provide some of the services in some communities. Voluntary associations, such as the Alzheimers, Parkinsons, and Huntingtons disease associations, also provide some of the services, often through their State and local chapters. Some hospitals and nursing homes provide some of the needed services on an outpatient basis, in addition to their traditional inpatient and residential care services. Private social
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Chapter 1 Summary and Overview l 23 service, nursing, family service, and senior service agencies provide some of the services in some communities. Other potential providers include churches, community ministries, the Salvation Army, YMCA, YWCA, United Way, and other service and philanthropic groups. Not all those agencies exist in every community. If they do, though, they may provide services needed by people with dementia. Given the diverse needs of such people, many of the agencies are possible sources of assistance. Factors That Limit the Availability of Services Because there are many potential service providers does not mean that enough services are available or that a patients needs can be met. As discussed in chapter 2, many details about an agencys services determine whether the services are really available to a particular patient and whether they meet his or her needs. These details include the agencys general eligibility criteria and any additional eligibility criteria for a specific service, the exact nature of the service, when and where it is provided and for how long, what it costs, and whether there is any source of funding for it other than client fees. These kinds of details often reflect regulations and requirements associated with the agencys funding source (e.g., Medicare, Medicaid, State programs). They may also reflect State or local government licensing or certification requirements; the agencys mission, objectives, and history; and the training and preferences of its staff (391,481,641,821,83 1). The details of each agencys services change from time to time, especially in response to changes in regulations and requirements associated with its funding sources (641,821,922). Federal, State, and local governments and private associations and foundations initiate new services and terminate others. Publicly and privately funded research and demonstration projects that provide services also begin and end. Some of the changes are small, but their cumulative impact is to create a constantly changing service environment. The number and type of agencies and individual providers vary in rural and suburban or urban areas. Some areas are service rich, and others are service poor. Rural areas are likely to be service poor. Some rural counties have no hospital, and a few have no physician. Many lack mental health professionals and other service providers. Because of low population density, residents of rural areas often have to travel a long distance to obtain services, and in some areas, there are not enough people with similar problems to justify specialized services (55,58,771,912). Linking people with dementia to appropriate services in areas that have very few services is difficult. On the other hand, the more services there are in a community, the greater the complexity of the service environment. At one extreme, United Seniors Consumer Cooperative, a private consumer health care cooperative in Washington, DC, identified 130 public and private agencies that offer transportation services for elderly people in the Washington area (800). Obtaining enough information about those agencies to select an appropriate provider is difficult. Sources of Public and Private Funding for Services Services for people with dementia may be paid for by the individual, his or her family, public programs, or private, third-party sources. Since people with dementia often need services for years, they are likely to need public or private third-party funding in addition to their own resources. There are many potential sources of such funding. At least 80 Federal programs pay for services that may be needed for people with dementia or provide funds so people can purchase the services (828). Many State and local government programs, private agencies, and voluntary and charitable organizations also pay for services or give people funds to purchase them. Publicly and privately funded research and demonstration projects pay for services in some communities. Lastly, some people have private insurance that covers some services.
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24 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias Factors That Limit the Availability of Funding for Services The existence of many potential sources of funding for services does not mean that adequate funding is available. Each source has rules that limit the availability of funding by restricting who is eligible and what services are covered. Eligibility may be restricted on the basis of a persons age, income, assets, diagnosis, physical or mental condition, residence, family composition, and other factors. Coverage may be restricted by rules about the type of service that can be paid for; the profession, training, and/or licensure of a person who can be reimbursed for providing the service; the setting in which it can be provided; and its duration and frequency (124,391,641,831). The rules in each of these areas are interrelated, so that a particular service is paid for only if it is provided to a patient with a certain diagnosis or condition, by a certain provider, in a certain setting, for a given time period. To further complicate this already confusing situation, the eligibility and coverage regulations of funding sources change from time to time. It is often unclear whether a person with dementia fits within the eligibility requirements for some funding sources, particularly Medicare and, to a lesser degree, Medicaid, that base eligibility on a persons physical condition and physical care needs. People with dementia frequently are determined to be ineligible for funding for services through these programs (124,186,479,831). On the other hand, some people with dementia receive services paid for by the programs. This may occur because of real differences in the physical condition and care needs of different patients, differences in the way a patients condition and care needs are described on an application or billing form, or different interpretations of a programs regulations by its administrators. Turf Issues Among Agencies and Individuals That Provide Services for People With Dementia Turf issues are prevalent among the agencies and individuals that provide services for people with dementia. Simply stated, turf issues arise when one agency, type of agency, or type of professional or nonprofessional service provider regards the care of people with dementia as its turf and believes that it, rather than another agency, type of agency, or service provider, offers the right services for such people. Turf issues arise at the national, State, and local level and add to the complexity and fragmentation of the service environment. Turf issues in the care of people with dementia arise between mental health and aging services agencies; health care and social service agencies; agencies that serve only people with dementia and agencies that serve elderly or disabled people in general; neurologists and psychiatrists; social workers and nurses, hospitalbased home health care agencies, free-standing home health care agencies, and independent home care workers; for-profit and nonprofit agencies; and myriad other combinations of agencies and professional, paraprofessional, and nonprofessional service providers. Sometimes, turf issues reflect self-serving competitions between agencies and individual providers for the public and private funds that pay for services and the jobs required to provide the services. Often, however, turf issues reflect sincere differences of opinion about which agencies and individuals provide the right services for the clients. Many of the agencies and individuals that provide services for people with dementia now have served the same kinds of clients for years, although not necessarily identifying them as people with dementia. As attention to Alzheimers disease and other diseases that cause dementia has increased recently, those agencies and individuals claim often legitimately special expertise and skill in the care of people with dementia and regard the care of such people as their turf. Sometimes, there is no explicit competition or difference of opinion about which agency or individual provider offers the right services for people with dementia. Instead, each agency,
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Chapter l-Summary and Overview l 25 type of agency, or type of individual provider regards the care of people with dementia as its turf and is simply unaware of others who serve the same kinds of clients. Services for people with dementia generally are provided in one of several broad systems of agencies and providers i.e., the medical or physical care system, the mental health system, the social service system, the public health system, the public assistance system, and the aging services system. These systems are delineated by the Federal programs that fund them, the education and training of people who work in them, and historical divisions among State and local government agencies that administer the services they provide. Although not rigidly differentiated, the systems generally are not integrated with each other. Service providers in one system may not be aware of services in other systems. Moreover, agencies and individual providers in the same system tend to have a common perspective on dementia and the right services for people with dementia. Thus, they may have greater understanding of and confidence in services provided by other agencies and individuals in the same system than those in other systems. For all these reasons, referrals are more likely to occur within a system than from one system to another. For example, agencies in the aging services system may not refer clients to services provided by the mental health system, and vice versa. The Complexity of the Service Environment for People With Dementia The large number of agencies and individuals that may provide services for people with dementia, the large number of potential sources of funding for services, and the complicated and changing rules that limit the availability of both services and funding create an extremely complex service environment in many communities. Some communities have fewer agencies and individual service providers than others, but the rules that limit the availability of services and funding for services remain. The complexity of services at the community level has been cited so frequently in discussions about health care, long-term care and social services for elderly and disabled people that it has become a cliche. Nevertheless, in the course of this study, OTAs staff was repeatedly amazed by that complexity. As one learns more about services and funding for services in a certain community, the service environment appears more, not less, complex. It is clear that there are some services and sources of funding for services in virtually every community but generally unclear whether those services and sources of funding are really available to people with dementia and what proportion of such people they serve. Two factors make the service environment especially complex for people with dementia even more complex than it is for elderly and disabled people in general. First, the service needs of people with dementia cross the boundaries of the broad systems of agencies and individual providers cited earlier to a greater degree than the service needs of most nondemented people. Second, in many communities, there are new services for people with dementia that are not well known and may serve very few patients but often provide good care to those they serve. One commentator describes the array of small, new services for people with dementia as a cottage industry (698). Implications for an Effective System To Link People With Dementia to Services The complexity of the service environment in many communities makes it clear why families and others have difficulty obtaining accurate information about services and funding for services. It also makes clear the need in all communities for an accurate, up-to-date list of available services and sources of funding for services. OTA does not have comprehensive data on how many communities have such a list, but evidence from various sources suggests that many communities do not (see ch. 2). Because of the large number of potential service providers and funding sources and the changing rules
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26 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias that affect their availability, maintaining an accurate list of services and sources of funding for services for people with dementia is difficult. Yet, such a list is essential for linking them to appropriate services. At the start of this assessment, OTAs staff thought that the biggest problem families and others face in trying to obtain accurate information about services and funding for services is lack of information. In the course of the assessment, it became clear that wrong and partial information are at least as big a problem. For example, people who contact an agency or individual for information may be told that there are no services when, in fact, there are services, or vice versa. Likewise, they may be told that there is a service, e.g., an adult day-care center, 30 miles away when there is another center much closer. Given the complexity of the service environment and the lack of an accurate list of services and sources of funding for services in many communities, it is easy to understand why families and others receive wrong information or only partial information about services and sources of funding. Having an accurate list of services would not change the complexity of the service environment at the community level or make up for the lack of sufficient services. It would improve access, however, and, by letting people know what services exist, it would allow for more appropriate use. Likewise, having accurate information about funding sources would not change the complexity and fragmentation of public and private programs that pay for services or make more funding available. It would increase the likelihood that people would receive benefits for which they are eligible. It is important to note that families and others need to know not only what services and funding for services are available, but also what services and funding are not available. They need both types of information in order to plan realistically and to make informed decisions about the care of their relative or friend with dementia. REASONS WHY PEOPLE WITH DEMENTIA AND THEIR CAREGIVERS MAY NOT USE SERVICES No national data are available on the percentage of people with dementia who use paid services. The findings of 11 small-scale studies reviewed in chapter 3 indicate that only about one-quarter to one-half of all people with dementia who live in the community use any paid services other than physicians services (71,88,117,223,227,242,291,41 1,479,448,774, 926). Among those people with dementia who do use paid services, many use very few services, use them infrequently, and/or use them very late in the course of their illness. The findings of two of the studies suggest that, on average, people with dementia use fewer paid services than people with physical impairments (71,255). There are many reasons why people with dementia and their caregivers may not use services. Lack of knowledge about services is one reasonand, in the view of family caregivers and service providers in Cuyahoga County, Ohio, who were interviewed for this OTA study, it is the most important reason. Threequarters of the caregivers and service providers who were interviewed said that peoples lack of knowledge about services is usually a reason people do not use services (186). 4 Knowledge about services has two components: general awareness of services, referred to in this report as service consciousness, and knowledge about a specific service, including who provides it in a community, referred to in this report as service knowledge (43 1). Interviews with family caregivers of people with dementia in Cuyahoga County, Ohio, found d~e rwtits of tie study conducted for OTA in Cuyahoga County are discussed in chs. 2 and 3. A 17W report on tie study Wn be ob~ed from tie National Technical Information Service in SpringilelcL VA (see app. A).
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Chapter 1 Summary and Overview 27 that, depending on the specific service in question, up to 92 percent of the caregivers lacked service consciousnessthat is, they had never heard of the service. Again, depending on the service, up to 96 percent of the caregivers lacked service knowledgethat is, they could not identify a specific provider in the community (186) (see ch. 2). Other barriers to the use of available services are the cost of the services and the inability of patients and caregivers to arrange the services. Three-quarters of the caregivers interviewed in Cuyahoga County, Ohio, said that inability to pay for services was a reason why they did not use services. Half the caregivers said that not knowing how to arrange services was a reason they did not use them (186). Often, it is fear of future costs rather than the current cost of services that stops caregivers from using services. Some caregivers who participated in Duke Universitys Respite Care Demonstration Project (see ch. 3) said they did not know how long services would be needed for their relative with dementia or whether they eventually would have to pay for nursing home care. Given those uncertainties, they were reluctant to spend even $10 a week for respite services (291). Many other perceptions and feelings of people with dementia and their caregivers also are barriers to their use of services. As noted earlier, people with dementia frequently do not recognize their impairments and do not know they need services. In addition, many of them have been or are afraid they will be exploited by service providers, especially nonprofessional in-home workers (286,934). Paranoia and suspiciousness, present in one-fourth to one-half of all people with dementia, exacerbate those fears. Some people with dementia isolate themselves from everyone, including service providers, because they are afraid that if anyone finds out how poorly they are managing, they will be put in a nursing home. Families and other informal caregivers may be reluctant to use services for many reasons. 89-150 90 2 Some informal caregivers do not perceive a need for services, either because they do not feel burdened by the demands of caregiving, or because they do not regard the person with dementia as being sick or having a disease. Many caregivers also feel that they should provide all the patients care themselves and that it is wrong to turn to outsiders for help (514,670,933). Others fear that people will criticize them for shirking their obligation to the patient if they use paid services. Such criticisms or even the anticipation of them discourage caregivers from using services (514,936). Caring for a person with dementia may require few skills that informal caregivers do not have, although often it requires all their time and energy. As a result, some caregivers feel guilty about using services they couldat least in theoryprovide themselves. Others feel often realistically-that no one can take as good care of the person as they can. Some family caregivers do not use services because they are embarrassed about patient behaviors, such as hallucinations, delusions, and agitation, that suggest the patient is mentally ill, and they want to conceal the behaviors from other people, including service providers (72,291,533,936). Others are afraid that the patient will be upset by new services or that the service providers will not be capable of caring for the patient. Caregivers who have a bad experience with one provider often are reluctant to try again (88,117,186,291 ,533,670,936). Some caregivers are so overwhelmed by feelings of sadness, guilt, frustration, and anxiety that they cannot think clearly about how services might benefit them or the patient (88,137,201,533, 610,916,936). Lastly, some caregivers feel uncomfortable about making decisions for the patient, including decisions about the use of services (533,669). For any of those reasons, some people with dementia and some caregivers never use paid services other than physicians services. Others eventually use services, but not until long after the time when an objective observer would have
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28 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias Photo credit: Peter Carroll Some caregivers do not use services because they feel-often realistically-that no one will take as good care of the person with dementia as they can. said they needed help. By that time, their need for help is so great and so immediate that the process of locating and arranging services takes place in an atmosphere of crisis. Moreover, even though by then the patients and caregivers need help immediately, the feelings and perceptions that made them reluctant to use services before often have not been resolved. As a result, they are ambivalent and emotionally conflicted, which further complicates the linking process. Some people with dementia and informal caregivers who do not use services do not need them. Others who say that they do not need services-or that they do not need services yet probably do need the services for the well-being and safety of the patient and the well-being of the caregiver (88,514). It is unclear whether or to what extent public or private agencies, individual health care and social service professionals, service providers, or even family members should encourage patients and caregivers to use services that they say they do not want or need. On the one hand, encouraging people who say they do not want services to use them seems absurd when there are not enough services to meet the needs of people who are asking for them. On the other hand, some commentators have noted that it is often the most isolated patients and objectively burdened caregivers who say they do not want or need services (88,291,688). One might argue that those patients and caregivers are more in need of services than other patients and caregivers and that society should reach out to help them. FRAMEWORK FOR AN EFFECTIVE SYSTEM TO LINK PEOPLE WITH DEMENTIA TO SERVICES The characteristics of people with dementia, of the family and other informal caregivers of such people (if they have any), and of the service environment that were discussed in the preceding sections imply certain requirements for an effective linking system. This section discusses the essential components and criteria for such a system. Figure 1-1 illustrates those components and criteria. Four Essential Components of an Effective Linking System Drawing on the information presented in the preceding sections and in chapters 2 and 3 of this report and on their own knowledge about and experience in working with people with dementia, the advisory panel for this OTA study concluded that an effective system to link people with dementia to services must include four components: public education, l information and referral, outreach, and l case management. Before reaching that conclusion, the OTA advisory panel considered and ruled out other possible components, such as diagnosis; caregiver education, training, and counseling; and legal and financial services. The panel determined that although these services are important for people with dementia, they are not essential components of an effective linking system and that patients and their families could be referred
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Chapter 1--Summary and Overview l 29 Figure 1-1Essential Components and Criteria for an Effective System To Link People With Dementia to Services Components of an Effective Linking System The system must provide: Information and referral Outreach Case management Public education Criteria for an Effective Linking System The system must be: l easily identifiable nationwide l available throughout the patients illness l able to work with people with dementia who have no informal caregiver able to serve long-distance caregivers l informed about available services and funding for services for people with dementia l dementia-friendly and dementia-capable. SOURCE: Office of Technology Assessment, 1990.
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30 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias by the linking system to other agencies, organizations, and individuals that provide the services. The OTA advisory panel also ruled out a linking system that left out any of the four components cited above for example, a system that provided only information and referral. Lastly, the panel considered whether the four components must be provided by a single agency or whether a consortium of agencies could provide them effectively. The panel concluded that a consortium of agencies could constitute an effective linking system if a genuine connection existed among the agencies so that clients would not fall through the cracks as they often do now. Public education, in the context of this report, means providing programs and materials to help people understand dementia and the kinds of services that may be helpful for individuals with dementia. Such programs and materials include pamphlets, articles, newsletters, and other publications; posters, press releases, and public service advertising in various media; radio and television programs; audiotapes and videotapes; teaching packets and curricula; and lectures, community meetings, and conferences. Information and referral, in the context of this report, means providing information about and referrals to specific services and sources of funding for services in a community. The process can occur by telephone or in person. As noted earlier, caregivers lack of knowledge about services is one of the major reasons that people with dementia do not use services. Both public education and information and referral are needed to increase peoples knowledge of services. Public education programs and materials are likely to increase service consciousness, i.e., general awareness of services, among the people they reach and therefore increase the likelihood that those people will search for information about specific services when the need arises. Public education programs and materials usually do not provide information about specific services. Information and referral programs do provide information about specific services in a community and therefore are likely to increase service knowledge. Information and referral programs can only assist people who contact them, however, and people who lack a general awareness of services may not contact an information and referral source. Outreach, in the context of this report, means using an active method of identifying individuals with dementia and caregivers who need assistance but are unlikely to respond to public education programs or to contact an information and referral source on their own. 5 Outreach methods to identify isolated individuals with dementia and isolated caregivers include: screening individuals at places like senior centers and senior nutrition sites; having health care and social service professionals and other service providers who interact with elderly people and their families identify people with dementia who may need help; and sending paid or volunteer workers out to apartment buildings, public housing facilities, and other sites to look for people who may need help. The outreach method that most closely matches the needs of isolated people with dementia and isolated caregivers is a gatekeeper program that makes use of the observations of individuals, such as mail carriers, utility meter readers, apartment managers, police, pharmacists, grocers, and delivery people, who come into contact with many individuals in the course of their regular activities. Through a gatekeeper program, these individuals-the gatekeepers are trained to identify isolated elderly people who may need assistance and to notify a central agency. That agency is responsible for contacting the person and assessing his or her need for Ssome ~acies and cornmen~tors use the term outreach in a sense that is different from the sense in which it k used by OTA in w repofi hey use it to refer to programs or services that an agency provides outside the agency. Some of these programs and services-e.g., lectures given by agency staff members to senior citizens groups or other community groups-are effective in reaching some people with dementia and their caregivers but are unlikely to reach isolate~ confused patients or isolated caregivers. In the context of this repo~ such programs are considered public education.
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Chapter 1--Summary and Overview l 31 Photo credit: Bill Adams Gatekeeper programs in some jurisdictions rely on mail carriers and utility meter readers to identify isolated people with dementia who may need help. assistance. 6 The first gatekeeper program in the United States was implemented in Spokane, Washington in 1978 (688). Gatekeeper programs are now in effect in many other jurisdictions (97,148,320,456,688). Case management, in the context of this report, means a process that includes five core functions: 1. assessing a clients needs, 2. developing a plan of care, 3. arranging and coordinating services, 4. monitoring and evaluating the services delivered, and 5. reassessing the clients situation as the need arises. Case management is widely cited as a potential solution for many problems in health care and long-term care for various client populations and various types of agencies. Different agencies and commentators use the words case management to mean very different things, however, and the confusion and disagreement about what case management is makes it difficult to communicate clearly about case management and its role in a linking system. Most commentators agree that case management includes the five functions just listed (22,43,59,1 10,271,382,572,574,581,657,757, 769,891,902), but agreement about these five functions does not resolve the confusion and disagreement about what case management is. For one thing, some commentators believe that case management includes additional functions notably, case finding, screening, client education, and counseling. More importantly, the implementation of the five case management functions varies depending on many factors, including the type of agency or organization providing the case management; whether the agency provides services in addition to case management; what the goals, educational background, and experience of the case manager are; and how big the case managers caseload is. These same factors also influence the relative amount of emphasis the case manager and the agency place on each of the case management functions. Many agencies that allocate long-term care services and funding for services use case managers to determine peoples eligibility for the benefits, to authorize the services and funding, and to monitor and account for their provision and use. When case managers are responsible for these essentially administrative tasks, the five core case management functions are modified to include the tasks. For example, service arrangement is modified to include GSome individtis have told OTA they believe that the outreach procedures used in gatekeeper programs may invade the Privaq of P~P1e who me ident~led as potentially in need of assistance. In contrast, individuals who administer gatekeeper programs have told OE4 that they have procedures for gaining the trust of a person they contact in response to notification by a gatekeeper and for obtaining at least informal consent from the person to assess his orherneeds (95,689). Given the cognitive deficits of people with dementi% their capacity to give consent is problematic, and safeguards must be built into any outreach program to protect their rights.
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32 l Confused Mind, Burdened Families: Finding Help for People With Alzheimers & Other Dementias administrative procedures for authorizing services and funding. Monitoring and reevaluation are modified to include administrative procedures to recertify the clients eligibility and to account for resources used. Some descriptions of case management, particularly in agencies that allocate services and funding for services, make case management sound like a series of administrative procedures to authorize and account for services and funds in accordance with the agencies policies and regulations. Other descriptions of case management, in those agencies and in general, emphasize its clinical features and portray the case manager more as a professional helper, problemsolver, and client advocate than as an administrator of benefits. Some commentators believe that there is a fundamental conflict between the role of the case manager as a helper, problemsolver, and advocate for the individual client and the role of the case manager as an administrator of benefits. Others believe the two roles are compatible. In practice, many case managers perceive themselves as performing both roles simultaneously and without conflict (47). If it were possible to distinguish between case management as a clinical process and case management as an administrative process and to call one case management and the other something else, it would be easier for everyone to communicate clearly about case management. That distinction does not hold up in reality, however, because the two processes are completely integrated in the practice of many case managers (see ch. 3). Because of the confusion and disagreement about what case management is, OTA tried at first to avoid using the words case management in this report, and to focus on the five core functions instead. That effort failed because the core functions are relevant to both clinical and administrative case management the same words are used to describe what case managers do in both instances. OTA then tried to delineate the specific procedures that might be involved in case management, but that effort also was unsuccessful in distinguishing among different kinds of case management. The case management cited in this report as one of the four essential components of a system to link people with dementia to services is the clinical process in which the case manager is a helper, problem-solver, and client advocate. One of the policy issues discussed in this chapter is whether a system to link people with dementia to services also should allocate services, in which instance, the case manager presumably would also have to be an administrator of benefits. Alternatively, each client could have two case managers, one of whom is an advocate and helper, and the other is an administrator and allocator of benefits. These options are discussed later in the chapter. It is important to emphasize that not all people with dementia and their caregivers need outreach and case management. Outreach is needed only for very isolated patients and caregivers. Case management is likely to be needed at least at some points in the course of their illness by all people with dementia who live alone and have no relative or friend to help them. Case management is also likely to be needed by some individuals with dementia who have an informal caregiver, for example, those whose caregivers are unable to define their service needs, reluctant to use needed services, or unable to arrange services for any reason. Because of the complexity and fragmentation of the service environment in many communities, individuals with dementia who need several different services may need a case manager to arrange and coordinate the services of multiple providers. On the other hand, some families and other informal caregivers function as case managers themselves (85,92,1 10,467,477,753,778), and more caregivers might be able to do so if accurate information about services and about funding for services were readily available. Criteria for an Effective Linking System Many criteria for an effective system to link people with dementia to services have been suggested in the previous sections. The most
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Chapter 1--Summary and Overview l 33 important of those criteria are reviewed here: l l l l l l The agencies that constitute the linking system must be uniformly identifiable throughout the country-perhaps by the use of a common name, logo, or telephone numberso that people know whom to call for assistance in locating and arranging services. Because certain services (e.g., accurate diagnosis and legal services) are needed early in the patients illness and because the service needs of people with dementia change over time, the linking system must be available to individuals with dementia and their caregivers throughout the course of the patients illness. The system must be able to work with families and other informal caregivers and with people with dementia who live alone and have no one to help them. The system must be able to serve longdistance caregivers. The agencies that constitute the linking system must develop and maintain an accurate list of services and sources of funding for services that encompasses all the kinds of services that maybe needed for people with dementia, including services provided by each of the broad systems of agencies and providers (e.g., medical or physical care, mental health, social service, public health, public assistance, and aging) and any new or specialized services for people with dementia. The linking system must be dementiafriendly and "dementi-capable. One of the policy issues discussed in this chapter is whether the linking system should serve people with dementia exclusively or should serve people with dementia and people with other diseases and conditions as well. In thinking about this issue, it is helpful to distinguish among three concepts "dementiafriendly, dementia-capable, and dementiaspecific. Dementia-friendly means the linking system is responsive to people with dementia and their caregivers. Dementia-capable means the system is skilled in working with people with dementia and their caregivers, knowledgeable about the kinds of services that may help them, and aware of which agencies and individuals provide such services in a community. Dementia-specific means the system serves only people with dementia. An effective system to link people with dementia to services must be dementia-friendly and dementia-capable, whether or not it is dementia-specific. The components and criteria discussed in this and the preceding sections define to a great extent what it means for a linking system to be dementia-friendly and dementia-capable. Clearly, the staff of the linking system must be knowledgeable about the usual characteristics and service needs of people with dementia and their families and other informal caregivers. At the same time, the staff of the linking system must be attuned to the diversity of people with dementia and their caregivers. The staff of the linking system must be aware, for example, of the cognitive and self-care deficits typically associated with dementia and their implications for patients service needs. To identify appropriate services for individual patients, however, the staff of the linking system also must be aware of the heterogeneity of cognitive and self-care deficits in people with dementia and the lack of correlation between cognitive and self-care deficits in some patients. Likewise, the staff of the system must be aware of the diversity among caregivers in their perceptions of the demands of caregiving and their subjective experience of burden. As discussed in chapter 2, many agencies that provide information and referrals for people with dementia do not keep records on the people they serve by either diagnosis or condition (186,756). That agencies do not keep such records does not prove that the individual social workers, nurses, or other people who provide information and referrals for the agency are unaware of patients diagnoses. It suggests that could be the case, however. If people with dementia are not identified as such by a linking system, they will not be referred for specialized
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34 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias Photo credit: Peter Carroll Sometimes, being connected to someone who knows the patient and is available to answer questions and respond to caregivers concerns is the only assistance a family wants or needs. services even if the services are available; publications that could be helpful to the caregivers will not be provided; and common characteristics of patients that influence their service needs and the process of linking them to services may not be recognized. In order to be dementia-capable, the agencies that constitute the linking system must identify their clients with dementia as such. As discussed in a later section of this chapter, OTA has included Alzheimers Association chapters as one of the 11 categories of agencies that Congress could, at least in theory, designate as the basis for a national system to link people with dementia to services. For that reason, Alzheimers Association chapters are discussed at some length in chapter 8. Regardless of any other role the Alzheimers Association and its chapters might play in a national linking system, however, they have a clear role to play in defining what it means for a linking system to be dementia-friendly and dementia-capable. Health care and social service professionals, service providers, and others have useful ideas on this subject, but the Alzheimers Association has been and continues to be the definitive source on the attitudes and concerns of Alzheimers caregivers. Voluntary associations that represent people with other diseases that cause dementia and their caregivers also have a role to play in defining what a dementia-friendly and dementia-capable linking system would be. These groups should advise and monitor the system on an ongoing basis. The Role of a Linking System as a Source of Potential Support Many researchers and clinicians have commented on the importance to caregivers of being connected to someone who knows the patient and the caregiver and is available to answer questions about the patients condition and respond to the caregivers concerns (257,412,483,610,934). Sometimes, that person is a physician, but it may be anyone who is knowledgeable about dementia and sensitive to caregivers concerns. Sometimes, being connected referred to as potential support by one research group (610)----is the only assistance a family wants or needs. Yet many agencies and individuals who work with people with dementia do not have a mechanism for providing that assistance on an ongoing basis, in large part because there is no public or private funding for it. As a result, they are only able to meet caregivers need to be connected in the context of providing specific services for the patient. One member of the advisory panel for this study noted that being connected often is the basis for appropriate use of services later on: It has been my experience that caregivers reach out often and fleetingly for information regarding potentially helpful services and programs over a period of months or years before they actually decide on help. It is quite important to have personal contact with a patient and a family-from one to three times-in order to
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Chapter 1--Summary and Overview 35 do an assessment that leads to appropriate guidance, care and referrals. Often, once the visit has been done, families previously resistive to care or intervention may agree to assistance, and they also find their own funds to pay for services hitherto thought to be too expensive, unattainable, or irrelevant. The engagement of the caregiver seems to be a critical step in the process of giving care and support and one about which I have seen little or nothing documented (283). Providing a source of potential support for patients, families, and other caregivers may be one of the most important functions of a linking system. If so, the function should be defined more clearly, differentiated from other functions of the system, such as information and referral and case management, and planned for specifically in the system. AGENCIES, ORGANIZATIONS, AND INDIVIDUALS THAT LINK SOME PEOPLE WITH DEMENTIA TO SERVICES Many public and private agencies and organizations, individual health care and social service professionals, service providers, and others currently provide one or more of the four functions OTA considers essential components of an effective linking system (i.e., public education, information and referral, outreach, and case management) for at least some people with dementia. Some of these agencies, organizations, and individual professionals and service providers work almost exclusively with people with dementia, and some work with people with other diseases and conditions as well. For some, linking people to services is their primary function. For others, their primary functions are providing health care, long-term care, social, or other services, and they link people to services in conjunction with providing those services. The study conducted for OTA in Cuyahoga County, Ohio, found that many agencies provide information and referrals for people with dementia in the county. 7 OTAs contractors identified 324 agencies in the county that they thought might provide services of any kind for people with dementia and sent a questionnaire to each agency (186). Of the 97 agencies that responded, 71 said they provide information and referrals for people with dementia. No attempt was made by OTAs contractors to find out whether any of the agencies that did not respond to the questionnaire also provide information and referrals for people with dementia, and some may. Moreover, the questionnaire was not sent to voluntary associations or individual health care and social service professionals who are also potential information and referral sources. Thus, the total number of information and referral sources in the county is probably much higher. Having a large number of agencies, organizations, and individuals that provide information and referrals for people with dementia is good in the sense that there are many places to which families and others can turn for help. On the other hand, providing information and referrals is not the primary function of many of the agencies, organizations, and individuals. Interviews with representatives of agencies that said they provide information and referrals for people with dementia in Cuyahoga County, Ohio, indicate that the agencies generally did not have comprehensive lists of services or lists of sources of funding for services (186). Since it is time-consuming to maintain an accurate list of services and funding sources, individual health care and social service professionals and service providers also are unlikely to have such lists. The large number of agencies, organizations, and individuals that provide information and referrals for people with dementia, often without an accurate resource list, increases the likelihood that people will receive wrong or only partial information about services and funding for services.
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36 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias Turf issues, discussed earlier with respect to providing services for people with dementia, arise at least as strongly with respect to linking them to services. That is partly because agencies, organizations, and individual professionals and service providers perceive that whoever links people to services controls which services are used and who gets paid for providing them (46,661). In the course of this assessment, OTA found that virtually every type of agency, organization, and individual professional and provider that works with people with dementia is aware of and concerned about the problem of locating and arranging services for them. Virtually every such agency, organization, and individual perceives itself as effectively linking some people with dementia to services, and many of them propose to solve the problem of locating and arranging services for people with dementia by expanding their role in the linking process. Often those proposals are made without consideration or even awareness of the many other types of agencies, organizations, and individuals that also link people with dementia to services. The following subsections of this chapter describe various agencies, organizations, and individuals that provide one or more of the four functions OTA considers essential for linking people with dementia to services. The discussion is not all-inclusive. Its intent is to give a sense of the many different types of agencies, organizations, and individuals involved and the diversity of their approaches. The first subsection describes some of the private agencies, organizations, and individuals that link people to services. The second subsection describes three Federal agency programs that provide one or more linking functions for people with dementia. The following two subsections summarize OTAs findings with respect to State programs and service systems and community service systems that link people to services and the State and local agencies that implement those programs and service systems. One of the policy issues discussed in this report is whether Congress should designate a single category of agencies nationwide to constitute a system to link people with dementia to services or, alternatively, mandate that each State designate the agencies that would make up the linking system in that State. In analyzing this issue, OTA identified 11 categories of agencies that Congress could, at least in theory, designate as the basis of a national linking system for people with dementia if Congress chose to establish a system composed of a single category of agencies. The last subsection explains how OTA identified the 11 categories of agencies and presents OTAs conclusions with respect to the current capability of any of the 11 categories of agencies to function as a national system to link people with dementia to services. 8 The information presented in the subsection on State programs and service systems that link some people with dementia to services pertains to the other alternativei.e., that Congress could mandate that each State designate the agencies that would make up the linking system in that State. Private Agencies, Organizations, and Individuals That Link Some People With Dementia to Services A variety of private agencies, organizations, and individuals link some people with dementia to services or sponsor programs that do so. Examples of those agencies, organizations, and individuals are discussed in this subsection. None of these entities serves people with dementia exclusively, but all of them serve some people with dementia. Most of the agencies in the 11 categories of agencies that Congress could, at least in theory, designate as the basis of a national linking gAs discussed la~r in this section, the 11 categories of agencies tbat it would be at least theoretically possible for Congress tO designate as tie basis of a national linking system for people with dementia are AAAs, community mental health centers, community health centers, Alzheimers Association chapters, Family Survival Projec~ States regional Alzheirners diagnostic and assessment centers, hospital-based geriatric assessment progmrns, home health agencies, socird health maintenance org a.nizations (S/HMOs), On Lok Senior Health Semices, and adult day centers.
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Chapter l-Summary and Overview l 37 system for people with dementia are private agencies and organizations. They are discussed at length in chapter 8 and are not discussed in this subsection. Private Companies Elder Care Programs In recent years, concern has increased in the business community about the problems of employees who are caring for elderly relatives (233). As a result, some private companies now provide elder care programs for their employees. These programs typically furnish information about community services for elderly people and sometimes offer company employees caregiver support groups, flexible work schedules, unpaid leave to allow them to attend to caregiving responsibilities, and counseling about problems in taking care of an older person (151,443,659). IBM has gone significantly beyond many other companies in helping its employees and retirees find services for themselves or for elderly relatives. In 1988, IBM initiated its Elder Care Referral Service, which provides information about available services, personalized counseling to help people clarify their service needs, referrals to community service providers, and short-term followup to determine whether the employees or retirees needs were met (1 16, 659,660). Work/Family Elder Directions, the private agency in Massachusetts that administers IBMs Elder Care Referral Service, subcontracts with agencies in 175 communities in which there are a significant number of IBM employees or retirees to provide the information and referral, counseling, and short-term followup that are part of the Elder Care Referral Service. IBM employees or retirees who live in other areas of the country can call Work/Family Elder Directions for assistance. To select the agencies that would implement IBMs Elder Care Referral Service, Work/ Family Elder Directions conducted a communityby-community analysis (659). That analysis led to the conclusion that there was no single category of agencies that could provide the service in all 175 communities. The agencies that eventually were selected to provide the service include AAAs, family service agencies, visiting nurse and other home health agencies, information and referral agencies (e.g., United Way information and referral), case management agencies, multipurpose senior service agencies, protective service agencies, and a few hospitals. Some of the agencies receive a basic fee intended to cover a certain number of cases at a per case rate; because they have staff and phone lines dedicated to the IBM project, those agencies receive the fee whether or not they serve the projected number of IBM clients. Other agencies get a fixed fee for each IBM client they serve. In 1988, the program served 8,100 IBM employees or retirees. Since 1988, several other private companies have contracted with Work/Family Elder Directions for similar programs (659). These companies include Arthur Anderson and Co., Aetna Life and Casualty, several divisions of ColgatePalmolive, Johnson and Johnson, and several divisions of CIBA-GEIGY. Other private companies have contracted with AAAs and other public and private agencies for such programs (450,577 ).9 United Seniors Health Cooperative United Seniors Health Cooperative is a private, nonprofit organization in Washington, DC, that furnishes its members with information and assistance in obtaining services and negotiates with service providers for discounts and special services for its members. Elderly people and their families can join the cooperative for an annual fee. The cooperative was established in 1987 and, by July 1989, had 12,000 members (208). To OTAs knowledge, it is the only organization of its kind in the country. 9ca F~~~~ Go~~mment agencies ~so con~act for elder cme progr~ for their employ~. Since 1988, the ofike of Personnel h&l.IMgeInt311t hascontractedwith aprivate agency in Iandsdale, Pennsylv@ the Partnership Group, to provide telephone consultations, educational materhds, onsite workshops, and personalized information and referrals for their employees who are caring foranelderlyrelative. From early 1989 to May 1990, the Social Security Administration contracted with the partnership Group for similar assistance for its employees in 7 Southeastern States.
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38 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias The cooperative provides information about services and about sources of funding for services. It has developed a computerized Benefits Outreach and Screening Service that identifies a persons potential eligibility for more than 50 Federal, State, and local funding programs. To use the service, an individual completes a questionnaire about his or her finances, medical condition, and other information. The information is fed into a computer, which reviews the available funding programs, identifies benefits the person is potentially eligible for, and prints out a list of those benefits and instructions on how and where to apply for them. The software package for the Benefits Outreach and Screening Service is available, and agencies in several areas of the country have purchased it (799). As of late 1989, the software was being adapted for use in New York State, where it will not only identify the benefits a person may be eligible for but also print out completed applications for six public programs that pay for services (208). Connecticut Community Care, Inc. Connecticut Community Care, Inc. (CCCI) is a private, nonprofit organization that provides case management for public agencies, corporations, foundations, and individuals in Connecticut. CCCI evolved from Triage, one of the first long-term care demonstration projects in this country (see ch. 7). When the demonstration ended, CCCI was established to continue and expand the Triage model of case management (677). OTA is aware of some other private, nonprofit case management agencies like CCCI in other parts of the country. In 1988, CCCI expected to serve 7,000 clients, including elderly individuals referred by Connecticuts Department of Aging, AAAs, and the State Medicaid agency. Those public agencies pay CCCI on a per case basis for assessments, care planning, service arrangement and coordination, and service monitoring. CCCI allocates and arranges a wide range of health care, long-term care, social, and other services paid for by the public agencies (409,677). In 1988, CCCI began providing case management for individuals on a fee-for-service basis (75). The organization offers comprehensive case management that includes the five core case management functions, but individuals also can purchase single case management functions, such as assessment or service coordination (see ch. 3). Private Geriatric Case Managers Private geriatric case managers are individual professionals (generally social workers or nurses) and others who provide client assessment, care planning, service arrangement and coordination, monitoring, and a variety of services for elderly people on a fee-for-service basis. The case management and services generally are highly personalized to respond to the individual needs of each client. Although no data are available, anecdotal evidence indicates that many clients of private geriatric case managers have dementia (136,450). Private geriatric case managers often work independently or with one or two other case managers under the umbrella of an incorporated firm. A 1986 survey of 117 private geriatric case management firms, conducted by Interstudy, found that 65 percent of the firms employed only 1 or 2 case managers (357). Their caseloads also tended to be small-one-third worked with 10 or fewer clients per year. Most had been in business 3 years or less. Seventy percent of the firms were independent, and the remaining 30 percent were affiliated with hospitals, social service agencies, or nursing homes. Their fees ranged from $13 to $100 an hour, with 53 percent charging $50 an hour. Private geriatric case managers sometimes are hired and paid by a relative of an elderly person, but some elderly people hire and pay a case manager themselves. More than half of the private geriatric case management firms that responded to the Interstudy survey said they provide case management for elderly people who live alone (357).
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Chapter l-Summary and Overview l 39 Private geriatric case managers and private geriatric case management firms often assist long distance caregivers. As of 1988, for example, Aging Network Services of Bethesda, Maryland, had developed a network of 250 social workers in communities across the country that could be hired by families or others to assist an elderly person in another locality (450). Some private geriatric case management firms contract with public agencies to provide case management for the agencies clients. In general, however, private geriatric case managers serve people who are ineligible for case management through public agencies because their income and assets exceed the agencies eligibility criteria. Elderlink The National Association of State Units on Aging, a private association, is working with its members and other agencies to develop Elderlink a national telephone information and referral program for elderly people (577). The program was initiated in Illinois in 1989 (148) (see figure 1-2). The primary objective of Elderlink is to assist long-distance caregivers in locating services for a relative or friend who lives in another community (577). The planning committee for Elderlink included representatives of State units on aging and AAAs-two types of agencies that are designated by States to implement certain provisions of the Older Americans Act. State units on aging are public agencies, but AAAs include public and private agencies. If and when Elderlink is established nationwide, it is likely to reflect a partnership of public and private agencies. Life Care and Other Residential Care Communities and Programs Life care communities (sometimes referred to as continuing care retirement communities) are organizations that provide housing and a variety of services for their residents in a campus-like setting or a single building (784). Typically, life care communities provide health care, longterm care, social, and other services, such as meals, transportation, and housekeeping, for their residents who need such services. Many life care communities also provide nursing home care. The provision of these services in a single setting eliminates for residents of the life care communities many of the problems in locating and arranging services that are the topic of this OTA report. Elderly individuals are usually admitted to life care communities while they are still able to function independently. As they age, some residents of life care communities undoubtedly develop dementia, but OTA is not aware of any information about the number of individuals with dementia living in life care communities. Recently, OTA has received a number of calls from private agencies and organizations that are developing or considering developing residential care communities specifically for people with dementia. Although each agency and organization has somewhat different plans, most intend to provide apartments for people with dementia and their spouses, supportive services for the individuals and their families, adult day care, and nursing home care on the same campus. Some agencies and organizations also intend to provide a variety of services for people with dementia who do not live on the campus, e.g., diagnosis, multidimensional assessment, in-home and institutional respite care, caregiver education and counseling, and support groups. A major objective of these residential care communities is to provide a single place to which families and other caregivers can turn for help throughout the course of the patients illness. The residential care communities are intended specifically to resolve the problem of locating and arranging services for people with dementia. An alternative to a residential care community is the life care at home model of care developed by the Bigel Institute for Health Policy at Brandeis University and currently being tested in several sites with funding from the Robert Wood Johnson Foundation and the Pew Foundation (135,783). People who enroll in a life care at home program pay an entry
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40 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias a n w 0 c
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Chapter 1--Summary and Overview l 41 fee, monthly fees, and copayments for certain services. The program, in turn, is obligated to provide a wide range of services intended to allow them to continue living at home for as long as possible. The services include nursing home care, home health aide and homemaker services, respite care, adult day care, and some routine medical care. Decisions about which services individuals receive are based on an assessment and care plan developed by a case manager. The case manager arranges any services provided by the program and helps the enrollees arrange services that are not provided by the program (e.g., transportation and home maintenance). Initially, life care at home sites will enroll only healthy older people, thus excluding people with dementia. For people who enroll in such a program and later become demented, however, the life care at home model is likely to eliminate most problems in locating and arranging services. Federal Agency Programs That Link Some People With Dementia to Services The Federal Government provides partial funding for many agencies and organizations that link some people with dementia to services, but the three programs described in this subsection are fully or primarily funded by Federal agenciestwo by the National Institute on Aging and one by the Health Care Financing Administration. All three programs are quite new. The Alzheimers Disease Education and Referral Center In 1986, Congress mandated, through Public Law 99-660, that the National Institute on Aging establish a clearinghouse to disseminate information concerning services available for individuals with Alzheimers disease and related dementias and their families. In 1987, the National Institute on Aging contracted for market research to determine the attitudes and knowledge about Alzheimers disease among the general public. The results of the research show that although virtually all the individuals who participated in the research had heard of Alzheimers disease, few had in-depth knowledge of the disease or where to go for help (850). The research participants identified several sources of information about Alzheimers disease, notably the media, physicians, the library, hospital/community outreach programs, and local telephone health information lines (765). Most of the research participants said they preferred a local source of information because local sources are more accessible and more likely to provide personal attention, but many of them recognized the potential benefits of a national source, e.g., credibility, access to the latest research findings, and access to information about resources outside the local community. In 1987, the National Institute on Aging contracted for a survey of Alzheimers Association chapters to determine the number of calls received by the chapters (an average of 10 to 30 calls per month);, the source of the calls (family members, social workers, respite care providers, and friends of Alzheimers Association members); the types of information requested by callers (information about the symptoms and the progression of the disease, the latest research findings, and sources of financial assistance); the chapters perception of the types of information needed (better financial and legal information, medication information, information on the latest research findings, information on sexuality and intimacy, and educational materials for physicians); and the chapters perception of the best formats for that information (videotape, printed materials, large print materials, and Spanish language materials) (765). In early 1988, the National Institute on Aging convened a planning conference of experts on Alzheimers disease education, treatment, and caregiving to determine needs and identify gaps in information dissemination (691,850). Despite this research and planning effort, the process of establishing the mandated clearinghouse engendered many of the same turf issues and concerns discussed earlier in this chapter. The major concerns with respect to the clearinghouse pertained to the possible duplication of
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42 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias efforts with other organizations that already provide information about Alzheimers disease and dementia and differences of opinion about which agency or organization is best able to provide that information. In 1989, the National Institute on Aging awarded a contract for the operation of the mandated clearinghouse, referred to as the Alzheimers Disease Education and Referral (ADEAR) Center. The ADEAR center will develop and maintain an online database, available to the public, that includes books, articles, and other publications and materials about Alzheimers disease and programs for dementia patients, their caregivers, and the professionals who work with them. The center will respond to requests for information from anyone (850). It will translate the latest scientific and technical information about Alzheimers disease into language comprehensible to the lay person, identify gaps in the current literature for the lay person, develop new publications to fill those gaps, and revise outdated publications. The center will also set up a national toll-free telephone information line. As of April 1990, the toll-free line was not operational, but National Institute on Aging officials expected that it would be operational by the end of 1990. According to National Institute on Aging officials, callers to the toll-free line will be provided information on the center and its services and be referred to other national and State organizations for more specific information on services in their locale (850). The center will work with a variety of other organizations to disseminate information about Alzheimers disease (e.g., the Alzheimers Association, the American Association of Retired Persons, State units on aging, and AAAs). Alzheimers Disease Research Centers The National Institute on Aging funds 15 Alzheimers Disease Research Centers (ADRCs) at university medical centers nationwide. The ADRCs conduct biomedical and clinical research about Alzheimers disease. As part of their clinical services, the ADRCs provide diagnostic evaluations and followup care for people with Alzheimers disease. One aspect of the followup care is referrals to community services. Recently, the National Institute on Aging has encouraged the 15 ADRCs to develop satellite clinical care facilities in order to expand the number of people and geographic areas they serve. In addition to clinical services and referrals for individuals with Alzheimers disease, the ADRCs provide public education about dementia and the care of people with dementia. Some of the ADRCs have developed informational materials about Alzheimers disease, and some ADRCs have cosponsored with the Administration on Aging caregiving conferences for family caregivers and other interested individuals. The staff of the ADRCs also respond to requests from the general public for information about and referrals to community services, although this is not one of the ADRCs primary functions. OTA does not know how frequently ADRC staff members respond to calls from thegeneral public for information about and referrals to services. The Medicare Alzheimers Disease Demonstration In 1986, Congress mandated, through Public Law 99-509, that the Health Care Financing Administration conduct at least five 3-year demonstration projects to determine the effectiveness, cost, and impact of providing comprehensive services for Medicare enrollees who have Alzheimers disease or a related disorder (504). The comprehensive services to be provided through the demonstration projects include adult day care, in-home services, and education and counseling for family caregivers. In 1988, eight demonstration sites were selected. Four of the sites are nonprofit organizations, three of which are sponsored by consortia of local agencies. The other sites include a hospital-based diagnostic and assessment program, a mental health center, a combined nursing home/community care organization, and a private, for-profit physician group practice
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Chapter l-Summary and Overview 43 organization. Each site is expected to enroll 500 patients, half of whom will be assigned to a control group. Two models of care are being tested: one model in which the demonstration sites receive up to $300 a month for services for each patient, and each case manager works with 100 patients, and another model in which the demonstration sites receive up to $500 a month for services for each patient, and each case manager works with 30 patients. The case managers are responsible for arranging and coordinating services for the patients. Patients and their families must pay for 20 percent of the cost of services covered by the demonstration projects. As of June 1990, most of the demonstration sites were still enrolling patients, and no conclusions had been reached with respect to the effectiveness, cost, or impact of the expanded services and case management. Anecdotal evidence suggests that some of the demonstration sites were having difficulty enrolling patients, particularly patients in the early stages of a dementing disease. Some observers have suggested that this difficulty may reflect a failure by some of the sites to implement effective outreach procedures to identify individuals and their caregivers who might enroll in the project. Other observers have suggested that the difficulty of enrolling patients in the early stages of a dementing illness may reflect the reluctance of families and others to acknowledge or call attention to the patients illness. State Programs and Service Systems That Link Some People With Dementia to Services All States have procedures by which they link at least some people with dementia to services. In thinking about States procedures for linking people to services, it is useful to distinguish between linking programs and service systems. As defined by OTA: linking programs are programs that perform one or more of the functions OTA concludes are essential for an effective l system to connect people with dementia to services (i.e., public education, information and referral, outreach, and case management); and service systems are organizational entities that pool funds from several sources and integrate the functions of various agencies in a given geographic area in order to create a consolidated system; one function of service systems is to connect people to services. An important difference between linking programs and service systems is that linking programs can be added to the service environment in a State or community without changing the structure, function, or relationship of existing agencies or the way services are funded. In contrast, the creation of a service system necessarily changes the structure, functions, and relationship of existing agencies and funding procedures. Many States have programs that link at least some people with dementia to services, and some States have a service system that links some people with dementia to services. Most State linking programs and service systems are for elderly people or elderly and disabled people, in general. Recently, however, some States have developed dementia-specific linking programs. OTA is aware, for example, of at least 14 States that, in 1989, had a statewide telephone information and referral program specifically for people with dementia (see ch. 7). Missouri is one of a few States that have both a statewide telephone information and referral program for elderly people and a statewide telephone information and referral program for people with Alzheimers disease and their caregivers (219). 10 In addition to maintaining telephone information and referral programs, some States, such as New York and New Jersey, have published resource directories for family caregivers and others that list available services for people with dementia (601,606). lOMSSofis ~o~tion and refemal profor elderly people and people with Alzheirners disease are described iU box 7-A ~ Ch 7.
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44 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias Some States have developed or paid for the development of public education programs and materials about dementia and services for people with dementia. In Alaska, for example, the Older Alaskans Commission has given grants since 1984 to the Alzheimers Disease Family Support Group (a private organization in Anchorage) to provide such programs (282,576). Additionally, public education has been one of the primary functions of the State task forces and committees that have studied the problem of Alzheimers and other dementing diseases. As noted earlier, gatekeeper outreach programs have been established in many jurisdictions. Often these programs are a joint initiative of the State department, division, or commission on aging, local AAAs, and utility companies (320). Illinois has a statewide system of gatekeeper programs administered by the Illinois Department on Aging and local AAAs in conjunction with several utility companies and rural cooperatives. With the addition in 1989 of Commonwealth Edison in northern Illinois, the gatekeeper programs now cover the whole State (148). Lastly, all States have at least one program that provides case management for elderly people, although some of these programs serve very few people (354). Some States provide case management through an independent case management program; some States provide case management as a component of a program that also pays for services, such as a Medicaid 2176 Home and Community-based Waiver program (see ch. 7); and some States provide case management through several different programs. State programs that provide case management generally are not dementia-specific, but they do serve at least some people with dementia. State programs that link some people with dementia to services are administered at the State level by different agencies in different States and by several agencies in some States. State aging agencies (departments, divisions, commissions, etc.) probably administer more of the existing linking programs than any other type of State agency, but many other types of State agencies (e.g., State departments of health, social services, or human services and State Medicaid agencies) are also involved. At the local level, State programs that link some people with dementia to services are implemented by numerous kinds of agencies, including local offices of various State and county departments, city government agencies, AAAs, and many types of private agencies. Often, several different local agencies are involved. In some States, programs that link some people with dementia to services are implemented by agencies that have no counterpart in other States. The number of States that provide and/or fund linking programs that serve at least some people with dementia is impressive and is growing, but it is also true that some States do not have such programs, and some States have linking programs that only serve a small percentage of all people with dementia and their caregivers. In addition, the four functions identified by this OTA assessment as essential components of an effective linking system for people with dementia (i.e., public education, information and referral, outreach, and case management) generally are not provided through the same State program, so people with dementia can easily fall through the cracks between programs. State programs that link people to services are extremely diverse. That diversity makes it difficult to design a national linking system that would build on rather than duplicate or disrupt the existing programs. If Congress mandated a single category of agencies to constitute a national linking system, that decision would undoubtedly engender resistance from State agencies that administer linking programs that would be duplicated or disrupted by the congressional mandate. In the past 10 to 15 years, in addition to, or instead of, establishing public education, information and referral, outreach, and case management programs, some States have developed a consolidated service system. These service sys-
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Chapter 1--Summary and Overview 45 terns are often referred to as long-term care systems. They generally connect their clients to a range of health care, long-term care, and social services, including services provided or paid for by the system. States purposes in developing consolidated service systems have been: l l l l l l to reduce the complexity and fragmentation of services; to connect people to the services they need; to limit unnecessary use of nursing home care; to gain control over public, and especially State, expenditures for health care and long-term care services; to create an organizational and administrative structure that allows for efficient and appropriate use of limited services and funds by targeting available services to the people who need them most and avoiding duplication of local agencies efforts; and, ultimately, to shift some of the public funds now spent on nursing home care to in-home and community services (353,362,372,374, 587). The development of a State service system may involve several kinds of changes in agencies and procedures at the State and community level, including: the designation of a single agency at the State level to administer and oversee all the Federal and State programs that pay for services; the designation of a single agency at the community level to administer services paid for by all Federal, State, and local government programs; the pooling of funds from different programs to pay for services; and the establishment of a uniform client assessment procedure, including the use of a common assessment instrument, for services paid for by various programs. States consolidated service systems include case management as a central component. The role of the case manager in such systems is often quite different from the traditional case management role in which the case manager coordinates or brokers services from various community agencies for an individual client; in a consolidated service system, a case manager more often administers and allocates services that are already coordinated by the structure and functions of the system. Consolidated service systems reduce the complexity and fragmentation of the service environment for the people they serve and generally make it easier for those people to connect to appropriate services, but many of the existing State service systems do not serve all types of people with dementia. Some systems do not serve people under age 60 or 65, and many State service systems focus primarily or exclusively on low-income people and/or people with severe functional impairments. Targeting public funds for services to lowincome people and people with severe functional impairments seems entirely appropriate, but such targeting is not necessarily appropriate for linking functions. As discussed earlier, people with dementia and their families need help in linking to services at all stages of the patients illness, including the early stages when the patient is not severely impaired. Patients and families with all levels of income and assets and patients under age 60 or 65 also need help in linking to appropriate services. Like State linking programs, State consolidated service systems are extremely diverse. Oregon, Wisconsin, and Illinois are three States that have gone further than most in creating consolidated service systems (see ch. 7). These three States systems have common elements including a method of coordinating the administration of various programs at the State level and methods for coordinating local agencies functionsbut there is great diversity even in these common elements. Oregon coordinates the administration of programs at the State level through a single State agency; Wisconsin uses a human service umbrella agency; and Illinois
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46 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias uses an interagency coordinating committee. Likewise, in each State, different types of agencies have been designated to administer services at the local levelAAAs in Oregon, county social service departments and County 51 boards in Wisconsin, and home health, senior service, and a variety of other kinds of public and private agencies in Illinois (587). Perhaps, the most important observation to be made about existing State service systems is that considerable time and effort were required to develop them, and difficult organizational and turf issues had to be resolved in the process. Most of the systems were developed incrementally. Among the obstacles they faced were: inflexible requirements and regulations of the Federal programs that pay for services; administrative and organizational characteristics of State agencies that were established in the past to implement Federal program requirements and, once established, are hard to change (436); and resistance from interest groups that fear that the consolidation of programs and funding sources at the State level will reduce overall funding for the client population they represent. Linking programs are easier to establish than consolidated service systems, because, as noted earlier, linking programs can be established at the State or community level without substantially changing the structure, functions, or relationships among existing agencies and without engendering the intense organizational and turf issues that must be overcome in the process of creating a consolidated service system. On the other hand, linking programs do nothing to reduce the fundamental complexity and fragmentation of the service environment, so the problems that patients and families encounter in connecting to appropriate services because of the complexity and fragmentation of the service environment remain. If Congress designated a single category of agencies to constitute a national linking system, States that have developed consolidated service systems would have to change their systems or, alternatively, accept the existence of several systemsan outcome they have already spent considerable time and effort to avoid. Conversely, if Congress allowed each State to select the agencies that would constitute the linking system in that State, States that have developed consolidated service systems could incorporate the components of the linking system into their existing service systems. Community Service Systems That Link Some People With Dementia to Services Some local communities have developed service systems that link at least some people with dementia to services. Four examples of such systems are described briefly here and at greater length in chapter 7. Two of the systems (the ones in Tulsa, Oklahoma, and Linn County, Iowa) serve elderly people in general, and two (those in northern New Hampshire and northwestern Ohio) are dementia-specific. Each of the systems was developed and is operated by a consortium of public and private agencies. A different approach to coordinating services at the community level currently being developed in Cleveland, Ohio, is also described. In 1983, five local agencies that provided funds for in-home services in Tulsa, Oklahoma, agreed to coordinate their services by adopting uniform definitions of services and service units, pooling their funds, and jointly contracting for the services (556). Building on the success of that effort, Tulsa established the Nations first public long-term care authority in 1987. The purpose of the authority is to create a single administrative structure to pool funds for services and coordinate service delivery. It is hoped that the authority eventually will coordinate the delivery of all services acute and long-term services; in-home, institutional, and community-based services; and publicly and privately funded services (557). Participating in the establishment of the Long-Term Care Management Authority of Tulsa were the local AAA, the State Medicaid agency, the VA Medical Center, the city and county of Tulsa,
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Chapter 1--Summary and Overview l 47 and the local United Way agency. The first project of the authority is a pilot case management project, funded by the Administration on Aging, to provide ongoing case management for elderly Medicaid and VA clients. A different approach to linking elderly people to services has been in effect since 1981 in Linn County, Iowa, where a consortium of local agencies that provide services for elderly people established the Linn County Case Management Project. The member agencies include the local AAA; the local mental health, family service, United Way, substance abuse, and community action agencies; two hospitals; three home health agencies; an adult day center; a senior center; and two county government agencies. The member agencies use a uniform assessment instrument to evaluate elderly clients who come to them for services. Twice a month, a case management team composed of representatives of the member agencies meets to review new cases, develop care plans, and assign responsibility for managing the care of each elderly person to one of the member agencies. In the opinion of its member agencies, the Case Management Project has reduced fragmentation and duplication of services in the county and minimized turf issues among the agencies (80,463). A community service system that specifically links people with dementia to services was established in 1987 in northern New Hampshire by a consortium of public and private agencies that joined to create the North Country Alzheimers Partnership Project. Two private, nonprofit agencies Tri-County Community Action Agency, Inc. and Crotched Mountain Community Care, Inc.jointly provide client assessments and ongoing case management for the project. They also provide information and referrals and family caregiver education, counseling, and support services. In-home services are provided by six local home health agencies. The project provides a single entry point and coordinated service delivery for people with dementia (551,614). The ACCESS Project in northwestern Ohio is another community service system that specifically links people with dementia to services. The ACCESS project is operated by a consortium of 10 public and private agencies that have been receiving funds from the State of Ohio since 1987 to provide case management and in-home and adult day services for people with dementia (156,196). Family Service of Northwest Ohio, a private, nonprofit agency, is the lead agency for the project. Everyone who receives services through the ACCESS project receives case management (196). ACCESS also has a strong caregiver education program. One component of the program is educational workshops conducted in various locations by the East Center for Community Health. The other component is in-home caregiver education, conducted primarily by a nurse from the Medical College of Ohio who uses a video cassette recorder and tapes about Alzheimers disease to provide individualized caregiver education about dementia and services for people with dementia (156). In Cleveland, Ohio, several agencies that serve elderly people, people with Alzheimers disease, and other client populations have taken a different approach to coordinating services: the agencies have co-located on a common campus, called the Fairhill Institute for the Elderly. As of June 1990, more than 10 agencies had established offices on the campus, including the Alzheimers Center of University Hospitals of Cleveland, the Joseph M. Foley Elder Health Center of University Hospitals of Cleveland, the Geriatric CARE Center of the Case Western Reserve School of Medicine, the Cleveland Chapter of the Alzheimers Association, the central Cleveland office of the Benjamin Rose Institute, the Retired Senior Volunteers Program of Cleveland, and the administrative offices of Golden Age Centers of Greater Cleveland. The concept of the Fairhill Institute is that the co-location of agencies will allow elderly people, including people with dementia and their caregivers, easy access to a variety of services and will simultaneously provide opportunities for joint educational programs for the agencies
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48 l Confused Mind, Burdened Families: Finding Help for People With Alzheimers & Other Dementias staff, encourage joint planning, and minimize competition and turf issues among the agencies. Agencies That Might Be Designated To Constitute a National Linking System for People With Dementia At the start of this assessment, OTA identified 11 categories of agencies that Congress could, at least in theory, designate to constitute a uniform national system to link people with dementia to services, if Congress chose to establish a system composed of a single category of agencies nationwide. The 11 categories of agencies were selected because agencies in each category currently link at least some people with dementia to services; because agencies in each category are discrete entities that could be identified and funded directly from the Federal level; and because agencies in each category are currently part of a nationwide system of agencies or could conceivable be expanded to serve the entire country. The categories of agencies OTA identified on the basis of these criteria are: area agencies on aging (AAAs), community mental health centers, community health centers, Alzheimers Association chapters, Family Survival Project, States regional Alzheimers diagnostic and assessment centers, hospital-based geriatric assessment programs, home health agencies, social health maintenance organizations (S/HMOs), On Lok Senior Health Services, and adult day centers. Some of these categories of agencies (e.g., Alzheimers Association chapters and States regional Alzheimers diagnostic and assessment centers) serve only people with dementia, and others serve other people as well. Some of the categories of agencies (e.g., AAAs, Alzheimers Association chapters, and Family Survival Project) link people to services as one of their primary functions. Others link people to servPhoto credit: Stan Welt Family Survival Project Family Survival Project, a San Francisco-based agency, helps caregivers of brain-impaired adults locate and arrange services. Most people who contact Family Survival Project are caring for an individual with dementia. ices secondarily to their other functions. In addition to linking people to services, all the categories of agencies provide some kinds of services, but the specific services vary from one category of agencies to another. OTA analyzed each of the 11 categories of agencies in terms of its current capability to function as the basis of a national system to link people with dementia to services. The analysis is presented in chapter 8 and is not repeated here. In chapter 8, each of the 11 categories of agencies is described briefly. The extent to which each category of agencies serves people with dementia and the extent to which each category of agencies provides public education, information and referral, outreach, and case management are discussed. Lastly, the advantages and drawbacks to designating each of the categories of agencies as the basis of a national system to link people with dementia to services are summarized. The idea of a national linking system composed of one category of agencies nationwide is appealing because such a system would be easy
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Chapter l-Summary and Overview l 49 to publicize, easy for families and others to remember, and readily accessible to caregivers at a distance. On the other hand, OTAs analysis of the 11 categories of agencies indicates that no single category is currently capable of functioning as an effective national system to link people with dementia to services. In each of the 11 categories of agencies, OTA identified one or more examples of agencies that effectively link people with dementia to services. These agency examples are highlighted in chapter 8. That there is at least one such agency example for each category of agencies indicates that other agencies in the same category could be modified so that they would also effectively link people with dementia to services. As discussed in chapter 8, each of the 11 categories of agencies has positive features that would contribute to its ability to function as an effective national system to link people with dementia to services, but each category of agencies also has drawbacks. Some of the categories of agencies generally underserve elderly people and people with dementia. Other categories of agencies that do serve people with dementia focus primarily on family caregivers and lack procedures for working with people with dementia who live alone and have no informal caregiver to help them. For several of the categories of agencies to add the linking functions they do not currently provide or expand the types of clients they serve to include people with dementia at all levels of severity and in all stages of their illness would change the agencies so greatly that their primary functions would be compromised and the agencies unique contributions to the care of people with dementia and other client populations might be lost. OTAs analysis suggests that a consideration even more important than any drawbacks to designating any of the specific categories of agencies, however, is that designating any single category of agencies to constitute a national linking system would duplicate and disrupt existing linking programs and service systems in many States and localities. OTHER CONSIDERATIONS IN CREATING AN EFFECTIVE LINKING SYSTEM FOR PEOPLE WITH DEMENTIA In addition to the components and criteria for an effective linking system discussed earlier, there are several other issues that must be considered in creating a linking system for people with dementia: what special procedures may be needed to link ethnic minority people with dementia to services; what procedures will be used to determine whether individuals are able to make decisions about services themselves, and, if not, who should make the decisions; whether the system will concern itself with the quality and appropriateness of services to which it links people, and if so, how; who will be responsible for linking veterans with dementia to VA and non-VA services; and how the system will relate to agencies that might be designated to administer any new, federally funded, long-term care benefits. Each of these issues is discussed briefly in this section. The first four issues are discussed at greater length in chapters 2, 4, 5, and 6, respectively. The related policy questions are whether, in mandating a linking system that would serve people with dementia, Congress should require that the system have explicit procedures for linking ethnic minority people with dementia to services, making decisions about services, evaluating and/or assuring the quality and appropriateness of services to which it links people, and linking veterans with dementia to VA and non-VA services, and if so, what those procedures should be. Special Problems in Linking Ethnic Minority People With Dementia to Services Ethnic minority people constitute about onefifth of the U.S. population. About 12 percent of all Americans are black; 6 percent are Hispanic,
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50 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias including people of Mexican, Puerto Rican, Cuban, and other Spanish/Hispanic origin; 1.5 percent are Asian American, including people of Chinese, Hawaiian, Korean, Philippine, Vietnamese, Cambodian, Asian Indian, and Japanese origin; and 0.6 percent are Native Americans, including Eskimo, Aleut, and American Indian people (492). The number of people with dementia in ethnic minority groups is not known. The age-specific prevalence of Alzheimers disease is generally believed to be the same for ethnic minority groups as for the population as a whole, but some differences in the prevalence of other diseases that cause dementia (e.g., multi-infarct disease) have been noted. For a variety of reasons, the percentage of people over age 65 is lower in ethnic minority groups than in the population as a whole, but that proportion is growing rapidly. Between 1970 and 1980, it increased 40 percent for blacks, 91 percent for Hispanics, 31 percent for Asian Americans, and 71 percent for Native Americans. This rapid growth in the age group in which dementia generally occurs portends rapid increases in the overall numbers of ethnic minority people with dementia (864). There are long-standing concerns about limitations on access to services and underutilization of all kinds of services by ethnic minority people (26,153,159,284,432,454,553,845,861). At the start of this OTA assessment, however, no research was available on problems that interfere with the process of linking ethnic minority people with dementia to services. OTA contracted for an exploratory study to identify such problems (866). The study was conducted in Los Angeles and San Diego Counties, California, and involved interviews with black, Hispanic, Japanese, and American Indian caregivers and staff members of agencies that work with each of the groups. 11 When the interviews were complete, the contractors and OTA staff met with the interviewers and service providers for the black, Hispanic, and Japanese caregivers to discuss the results and policy implications. 12 It was not possible for OTA staff to meet with the American Indian group within the time frame of the study. As discussed in chapter 2, the results of the exploratory study and discussions with the interviewers and service providers suggest that ethnic minority people with dementia and their caregivers have several special needs with respect to information about services and funding for services. First, some members of certain ethnic minority groups do not speak English at all or well enough to communicate about the details of service availability and funding for services. That information must be available to them in their native language. Language is not the only problem, however. The cultural heritage, traditions, customs, and beliefs of ethnic groups create differences in how and when members of a group perceive the problem of dementia, who is expected to be the caregiver, what that individual or individuals responsibilities are, whether formal services are acceptable, and how and when they are sought (160,315). Information about dementia and services for people with dementia must reflect awareness of those cultural differences. Cultural values and concerns also are relevant in selecting service providers for ethnic minority people with dementia. The linking system must be knowledgeable about agencies and individual providers capacity to work with people of different cultural backgrounds. Demographic variables, such as income and educational background, vary both among ethnic minority groups and within a given group. Information about services for people with dementia must be tailored to economic and educational differences as well as to cultural differences. Lastly, for cultural, demographic, and historical reasons, many ethnic minority people live in 1~0E4s con~ctors intended to include Chinese and Korean people in tbe study but were unsuccessfid in ammging the nwesq intefiews. lz~e mee~g participants are listed in app. A.
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Chapter I-Summary and Overview l 51 Photo credit: On Lok Senior Health Services In some communities, there are agencies that serve primarily one ethnic minority group. On Lok Senior Health Services in San Francisco serves primarily individuals of Chinese descent. communities largely composed of members of the same group. In these communities, there is generally an infrastructure of individuals and associations recognized by the community as sources of information and assistance with a wide range of problems (380). There also may be agencies that primarily serve one ethnic group. If information about services for people with dementia is to reach patients and their caregivers, it must be available through those individuals, associations, and agencies. The caregivers interviewed for the exploratory study conducted for OTA in Los Angeles and San Diego Counties represent only one segment of the population of caregivers of ethnic minority people with dementia caregivers who are already connected to services of some kind (866). The service providers, interviewers, and OTAs contractors pointed out that many ethnic minority people with dementia and their caregivers are not connected to services. They said dementia frequently is not identified in ethnic minority people, sometimes because families regard patients cognitive deficits and behavioral problems, if any, as part of normal aging, but more often because families are ashamed of some symptoms of dementia and hide the patient. The impression of OTAs contractors and the interviewers was that the problem of dementia is only one of many health and mental health problems facing service providers in ethnic minority communities. Available resources are stretched thin, and agencies are overwhelmed by many urgent needs. Moreover, some providers are not knowledgeable about dementia or appropriate services for people with dementia (866). The most surprising finding of the study conducted for OTA was the difficulty OTAs contractors experienced in locating ethnic minority caregivers of people with dementia who were willing to be interviewed (866). Many caregivers who were contacted were not willing to be interviewed or even to acknowledge that their relative or friend had dementia. OTAs contractors concluded that the difficulty they encountered in finding caregivers to interview was similar in some ways to the difficulty a linking system would have in connecting with ethnic minority people with dementia and their caregivers. Likewise, the method that was at least partially successful for the researchers working through the ethnic minority community infrastructure and ethnic minority agenciesis probably the best way for a linking system to connect with those people. Some patients and their caregivers are not in contact with the community infrastructure or ethnic minority agencies, however. Other outreach methods would be needed to connect with them.
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52 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias Ethnic minority groups are distinguished by differences in language (if any), culture, demographic factors, and by peoples awareness that they are part of the group. Although language differences usually are not a factor for nonminority people, all Americans have a cultural background and demographic characteristics that are likely to affect their perceptions of dementia, their expectations about caregiving responsibilities, and their attitudes about the use of formal services. Clearly, a system to link people with dementia to services should be responsive to the diverse perceptions, expectations, and attitudes of both minority and nonminority people with dementia and their caregivers. Questions About Making Decisions About Services for People With Dementia Cognitive deficits associated with dementia affect the capacity of people with dementia to make decisions about services for themselves and raise difficult questions about how their capacity to make decisions should be determined and how decisions should be made for people who are not capable of making decisions for themselves. Those questions often are obscured by the practical difficulties involved in locating and arranging services in a complex service environment and by the severe time constraints within which decisions about services must be made in many instances. Nevertheless, the questions are inherent and unavoidable in the process of linking people with dementia to services. Every agency and individual that arranges services for people with dementia answers them in some way---either explicitly, with formal or informal procedures for determining decisionmaking capacity and making decisions for clients who are not capable of deciding for themselves, or implicitly, by the way such decisions are made. The way the questions are answered involves fundamental legal rights of the patient and complex legal and ethical issues. The rights and issues are at stake whether or not the individuals who make or participate in the decisions are aware of them. Most agencies that arrange services for people with dementia do not have explicit procedures either for determining clients decisionmaking capacity or for making decisions (or designating someone to make decisions) for clients who are not capable of making decisions for themselves (see ch. 4). Individual case managers and others who work directly with clients necessarily act on judgments about their clients decisionmaking capacity and about who should make decisions for clients that are not capable of deciding for themselves, but the case managers and others may not be conscious of making such judgments or knowledgeable about the implications of the judgments. If an agency or individual that arranges services for people with dementia is unaware of the legal rights and legal and ethical issues involved in decisionmaking, those rights and issues will not receive adequate attention. Having explicit procedures for determining decisionmaking capacity and making decisions for clients who are not capable of making decisions for themselves does not guarantee that people with dementia who are capable of making decisions always will be given the opportunity to make them or that the right surrogate decisionmaker always will be chosen. Having such procedures does focus attention on the legal rights and legal and ethical issues at stake in decisionmaking and makes it more likely that those rights and issues will be considered in the way decisions about services are made. If Congress mandated a national system to link people with dementia to services, Congress could require the agencies that constitute the system to have explicit procedures for determining decisionmaking capacity and making decisions (or designating someone to make decisions) for people who are not capable of making decisions for themselves. In establishing such procedures, agencies would have to address many difficult questions, including: What criteria should be used to determine decisionmaking capacity?
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Chapter I-Summary and Overview l 53 Photo credit: Aizheimer's Association and Rush-Presbyterian/St. Lukes Medical Center The process of connecting an individual with dementia to services often involves difficult judgments about whether the individual is capable of making decisions about services for herself or himself and, if not, who-should make the decisions. l l l l l l Who should be involved in determining a persons decisionmaking capacity? What procedures should be used to enhance the decisionmaking capacity of individuals with dementia, while at the same time protecting decisionally incapable individuals from potentially harmful decisions? How should surrogate decisionmakers be selected? What procedures should be followed when a decisionally incapable persons relatives disagree about which one of them should be the surrogate decisionmaker? How should nonfamily caregivers be involved in decisions about services for the individual they are caring for? What criteria should guide surrogate decisions? Under what circumstances should the agencies refer an individual for formal guardianship? One of the most difficult questions faced by any agency or individual that links people with dementia to services is the relative importance that should be given to the needs, preferences, and best interests of the family v. the patients needs, preferences, and best interests. In 1983 and 1984, a Wisconsin program, Consumer Directed Services (CDS) Initiative, gave 70 individuals with chronic disabilities, including some people with dementia, vouchers to purchase services. Each participant--called a conhad a service coordinasumer by the project tor, whose job it was to help the person define
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54 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias his or her service needs and select services. According to the project final report: One of the first questions all CDS staff had to grapple with was who is the consumer? This question arose when the person in need of long term support had significantly diminished mental capabilities and when family members and other natural supporters were deeply involved in providing direct support to the person. It was in these instances that CDS staff had the greatest difficulty in sorting out the interests of the consumers from. the interests of the family. Frequently, there were competing interests within the family. It may seem obvious that the consumer in such a situation is the disabled person, and that CDS staff should have focused on facilitating that persons interests. In doing extended assessments of peoples situations, however, CDS staff found that involvement of the family and other support network members was so vital an element that their interests could not be separated from those of the disabled person (919). Chapter 4 discusses the question, who is the consumer? (or who is the client?) and discusses the implications of various answers to the question with respect to decisions about services for people with dementia. Further analysis and debate is needed about many of the difficult questions about decisionmaking that are inherent in the process of linking people with dementia to service. In addition, case managers and others who participate in the linking process probably would benefit from training about the legal rights, legal and ethical issues, and clinical considerations involved in the way judgments are made about an individuals decisionmaking capacity and about who should make decisions for people who are determined to be decisionally incapable. Determining the Quality and Appropriateness of Available Services The quality and appropriateness of all kinds of services that may be used for people with dementia vary greatly from one agency and individual service provider to another. Because of their cognitive deficits, people with dementia are particularly vulnerable to inappropriate or poor-quality care. They may be unable to identify or articulate their care needs, to evaluate the services they receive, to remember and report instances of poor care, or to be believed. Families and other informal caregivers realize that people with dementia are vulnerable, and they are often extremely concerned about the quality and appropriateness of services they may use for their relative or friend with dementia. Books, pamphlets, and articles about services for people with dementia suggest that families and other informal caregivers are responsible for selecting good services and that information about the quality and appropriateness of available services-on which they could base their selectionis available from a variety of sources, including relatives, fiends, and acquaintances who have used the services; physicians, nurses, social workers, and other health care and social service professionals; professional and provider associations, the Alzheimers Association, caregiver support groups, information and referral agencies, hospital discharge planners, case managers, long-term care ombudsmen, AAAs and other aging network agencies, various State and local government agencies, and government regulatory programs. OTAs analysis indicates that accurate information about the quality and appropriateness of services is sometimes available from most of these sources but is not consistently available from any of them (see ch. 5). Moreover, obtaining accurate information about the quality and appropriateness of service from those sources may take time and abilities that people with dementia and some informal caregivers do not have. A linking system could take several different approaches in addressing the difficulties people have in obtaining accurate information about the quality and appropriateness of services. It could refer patients and families to specific sources of information about quality and appropriateness; it could provide patients and families with information about the quality and appropriateness of services it refers people to or arranges for
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Chapter 1--Summary and Overview .55 them; it could refer patients and families to or arrange for them only services that meet certain standards of quality and appropriateness; or, if the linking system provides services, it could assure the quality and appropriateness of those services directly. All these alternatives presuppose that there are accepted criteria for evaluating the quality and appropriateness of services for people with dementia and that information about quality and appropriateness is available somewhere. As discussed in chapter 5, however, many conceptual and practical difficulties in defining and evaluating quality and determining what makes services appropriate for people with dementia hinder the development of such criteria and information. In the public debate about services for people with dementia, concerns about the quality and appropriateness of services are often considered secondary to concerns about the insufficient availability of services. Some health care and social service professionals, case managers, government planners, policy analysts, and others whom OTA asked about evaluating the quality of services for people with dementia responded that there is often no choice about services. In many localities, they said, families are lucky if there are any services available-let alone services that are appropriate for a person with dementia and of high quality. Certainly, the concern about insufficient availability of services is legitimate. On the other hand, even when services are available, families concerns about the quality and appropriateness of services are sometimes the determining factor in their decisions about whether or not to use the services. In the view of some families in some situations, services that are available but of poor quality or inappropriate for the patient may just as well not exist. The best approach to helping families and others locate good services depends in part on which agencies are designated to constitute the linking system. Conversely, it would be unwise to designate for this purpose agencies that, for any reason, cannot either provide patients, families, and others with information about quality and appropriateness or assure directly the quality of services it links them to. These considerations are discussed in chapter 5. Also discussed there is the unresolved question of the role of a linking system with respect to the quality and appropriateness of services to which it links people with dementia who have no relative or friend to help them and would not be capable of using information to evaluate services for themselves, even if the information were available. Linking Veterans With Dementia to VA and Non-VA Services By the year 2000, there will be 9 million veterans over age 65, including two-thirds of all American men over age 65 (854). As the number of elderly veterans increases, so will the number of veterans with dementia. The VA estimates that there will be 600,000 veterans with dementia by the year 2000 (76). The VA operates the largest health care system in the United States and currently provides many of the kinds of services that may be needed for veterans with dementia. Those services include acute medical care, diagnostic and assessment services, nursing home care, domiciliary care, hospital-based home care, adult day health care, institutional respite care, and some specialized services for individuals with dementia. In the course of this assessment, one OTA staff member visited several VA medical centers that are providing specialized services for veterans with dementia, some of which are described in chapter 6. Not all health care and health-related services that are needed for veterans with dementia are available through the VA, however. Some services, such as in-home respite care are not provided by the VA at all. Other services are provided only at certain VA medical centers. As of 1989, for example, 100 of the 172 VA medical centers provided institutional respite care, and only 15 of the 172 VA medical centers provided adult day health care (837). Moreover, most VA health care and health-related services
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56 l Confused Miles, Burdened Families: Finding Help for People With Alzheimers & Other Dementias are provided at VA medical centers. Since the 172 VA medical centers are not uniformly distributed across the country, and since some have very large catchment areas, veterans and their caregivers may have to travel long distances to obtain VA services, and some may not be able to obtain the services (481,662,724,823). Lastly, many VA services are furnished on a space available basis, so that even if the services a veteran needs are provided by a VA medical center the veteran can reach, he still may not receive the services because the programs that provide them are full. The eligibility criteria for VA services also limit access to the services for veterans with dementia. The VA has complex eligibility criteria that give highest priority for VA services to veterans with service-connected disabilities and veterans with low income (see ch. 6). Since most diseases that cause dementia occur late in an individuals life, long after he or she is discharged from military service, dementia is seldom considered a service-connected disability. Some veterans with dementia have another service-connected disability or have low income, but veterans with dementia who do not have a service-connected disability or low income generally have low priority for VA services. As a result, their chances of receiving VA services are highly dependent on whether there is space available in the programs that provide the services they need. Some people believe the VA should provide all the health care and health-related services that are needed for all veterans, including veterans with dementia. Others believe that for financial and other reasons, the VA should not or cannot provide all needed services for all veterans. This OTA report does not address the questions of what services the VA should provide or for whom. It focuses instead on the processes by which veterans with dementia are (or are not) linked to the VA services for which they are eligible and to non-VA providers for services they need but cannot obtain through the VA. The report assumes that, although the amount and types of services provided by the VA and the eligibility criteria for VA services will undoubtedly change from time to time, it is unlikely that the VA will ever provide all the services that may be required by all veterans. As a result, veterans with dementia will need to be linked to both VA and non-VA services. Problems of several kinds interfere with the process by which veterans are linked to VA services. As mentioned earlier, the eligibility criteria for VA services are complex. Veterans and their families often do not understand the criteria and may assume the veteran is not eligible for services when he is, or vice versa. They also may not be aware of potentially beneficial services provided by the VA. Many non-VA agencies and individual professionals and service providers who work with people with dementia also do not understand the VAs eligibility criteria and may not be knowledgeable about VA services, so they cannot give veterans and their families accurate information about the services, and they may fail to refer individuals to the VA who would be eligible for services. As a result, some veterans and their families never apply to the VA for services, even though the veteran is potentially eligible. Interestingly, some caregivers of veterans with dementia who were receiving good care from the VA told OTA staff that they had learned about the services completely by accident (see box 6-C inch. 6). Until recently, the VA itself has not been fully aware of the kinds of services it is providing for veterans with dementia. In 1988, the VA conducted a survey of all 172 VA medical centers to find out what programs and services were available for veterans with dementia (76). The results of the survey have been compiled into a directory for internal VA use in referring veterans and their caregivers to services and responding to public inquiries about the location of services for veterans with dementia across the country. The directory cannot solve the problem of determining whether an individual veteran with dementia will actually receive VA services, however, because that determination depends to
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Chapter 1--Summary and Overview .57 a great extent on space availability at the time the veteran needs the services. Other problems interfere with the process by which veterans with dementia are linked to non-VA services. According to several sources, the most difficult problem encountered by the VA in linking veterans to non-VA services is the complexity and fragmentation of non-VA services at the community levelthe same problem encountered by anyone who tries to locate and arrange services in many communities (481,854, 860). Each VA medical centers Social Work Service has a community services coordinator whose job is to identify non-VA services in the community and to coordinate VA and non-VA services. The VA has also developed a software system to help the Social Work Service at each VA medical center maintain an up-to-date list of non-VA services. The community services coordinator position is staffed only half-time at many VA medical centers, however, and, as noted throughout this OTA report, the complexity and fragmentation of non-VA services in many communities make it difficult for anyone to maintain an accurate, comprehensive resource list. As a result, some VA personnel who refer veterans with dementia to non-VA services may not be aware of potentially helpful services in the community. The Social Work Service at each VA medical center has primary responsibility for linking veterans to non-VA services through its hospital discharge planning and case management functions (see ch. 6). Although VA hospital discharge planning and case management are undoubtedly effective in connecting many veterans to non-VA services, there are two groups of veterans who may not receive the assistance they need: l VA hospital discharge planning and case management are provided primarily, although not exclusively, for veterans who are already receiving or are eligible to receive VA services, but many veterans with dementia are unlikely to receive or to be eligible for VA services and therefore may not receive help from the VA in finding non-VA services, and VA case management generally is more readily available for veterans who live near a VA medical center; some VA medical centers have very large catchment areas, and many veterans in their catchment areas live far from the center; as a result, these veterans may not receive help from the VA in finding non-VA services (236). Without effective methods for linking veterans with dementia to both VA and non-VA services, some, and probably many, veterans with dementia will not receive the services they need. As the number of veterans with dementia increases in the next decade, the demand for services for these veterans and the need for effective methods of linking for them to services will also increase. The policy issue discussed at the end of this chapter is the appropriate division of responsibility between the VA and a non-VA linking system for connecting veterans with dementia to services. Because of the complexity of the eligibility criteria for VA services, especially as they interact with the factor of space availability, only the VA can finally link veterans to VA services. The non-VA linking system would have to be knowledgeable about VA services and eligibility requirements, however, in order to know when to refer veterans with dementia to the VA. With regard to linking veterans with dementia to non-VA services, there are two options. If a national linking system were established, it could assume the primary responsibility for linking veterans with dementia to non-VA services. Alternatively, the VA could assume the primary responsibility for linking veterans with dementia to non-VA services. These options are discussed at the end of this chapter. Lastly, it is clear that the VA is an important provider of services for some, and perhaps many, veterans with dementia. For that reason, the VA must be involved in the planning and operation of a national system to link people
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58 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias with dementia to services regardless of the specific responsibility it has for linking veterans with dementia to non-VA services. The Relationship of the Linking System to Congressional Proposals for New Long-Term Care Benefits As mentioned at the beginning of this chapter, several bills have been introduced in Congress in 1988, 1989, and 1990 to expand Federal funding for a variety of long-term care services. Provisions in most of the bills indicate that the agencies designated to administer the new benefits also would link people to services. This report does not evaluate any of the legislative proposals specifically. Some general statements can be made, however, about differences between the linking system discussed in this report and the linking functions that would be authorized by many of the proposed bills. First, to OTAs knowledge, none of the proposed bills include the provision of public education, information and referral, or outreachthree of the four components that OTA concludes are essential for an effective system to link people with dementia to services. Second, the case management that is part of the proposed bills would only be available to people who meet the eligibility requirements for the services to be authorized by the billsusually impairments in two or more activities of daily living (ADLs). Presumably, anyone who received the services authorized by the proposed bills also would receive case management, since case managers would administer the services. In contrast, the case management that is a component of the linking system discussed in this report would be available to anyone who needed it, regardless of the severity of their impairments or their eligibility for any particular service. No one would be required, however, to receive case management as a condition for receiving any other assistance from the linking system. The linking system described in this report probably would be available to more people than the number who would receive long-term care services and case management through the proposed bills, but the linking system would not provide any new funding for services. In contrast, the proposed bills would make available funding for many new long-term care services for people who met the eligibility requirements in the bills. The proposed bills would not necessarily provide: 1) information and referral for people in the early stages of dementia when referrals for accurate medical diagnosis, and legal and financial counseling are particularly important; 2) referrals for services that are not included in the bills; or 3) outreach to isolated people with dementia and caregivers who may need services but are unlikely to contact a long-term care agency on their own. Combining the linking system discussed in this report and the expanded long-term care services delineated in the proposed bills would create a comprehensive long-term care system that would both cost more and help more people than either approach by itself. Combining the two approaches would have implications for several of the policy options discussed at the end of this chapter. First, the combined system necessarily would serve anyone who needed long-term care, not just people with dementia, but it still could be dementia-friendly and dementia-capable. Secondly, the agencies that administered the combined system necessarily would allocate services and funding for services. Lastly, some of the categories of agencies identified by OTA as potentially capable of constituting a national linking system would not be capable of administering the combined system. Other Considerations Six questions that are relevant to establishing an effective linking system for people with dementia but have not been discussed in this chapter are briefly reviewed here. The first is the cost of a linking system. That cost would vary greatly, depending on which agencies constitute the system and many other factors. The available information about the cost of some State linking programs is presented in chapter 7. Chapter 8 includes the available information
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Chapter --Summary and Overview l 59 about funding for the 11 categories of agencies discussed there. The figures are not necessarily comparable, however, because the linking functions and other services provided by each of the categories of agencies differ so greatly. Further analysis of the cost of a linking system will be needed once decisions have been made about which agencies will constitute the system, whether the system will serve people with dementia exclusively or other people as well, and other issues. The second question is the role of computer technologies in an effective linking system. Clearly, computer technologies make it easier to maintain an accurate list of services and sources of funding for service in the complex, changing service environments that exist in many communities. The difficulty of maintaining such a list is due not to lack of computer technologies, but rather to lack of agency resources committed to updating the list, turf issues that interfere with various agencies and individuals willingness to cooperate in developing and maintaining the list, and problems in defining and categorizing services in a way that is relevant to the needs of patients and families. These issues are discussed in chapter 2. The computerized databases being used by some agencies and organizations that link people with dementia to services are discussed in chapters 7 and 8. The third question is who the case manager should be. Virtually all health care, social service, and other human service professionals and service providers manage their clients in some sense. Nurses and social workers are the case managers in many agencies that provide the kinds of health care, long-term care, and social services that may be needed for people with dementia. State agencies that allocate long-term care services often employ as case managers individuals with a college, but not a professional degree in a human service field (47). Differences of opinion about who should be the case manager usually focus on social workers v. nurses and involve competing claims about the knowledge and skills that case managers need and which professional group has that expertise (23,31 ,46,204,265,382,558,647). Those differences of opinion sometimes result in intense turf conflicts. In many agencies, however, social workers and nurses work together constructively and comfortably, learning from each other and relying on each others special knowledge and skills. Many commentators, including some of those who have noted the turf issues between social workers and nurses, have concluded that both are needed for effective case management (23,31 ,409,506). That seems to be a wise conclusion. All social workers and nurses are not necessarily knowledgeable about dementia or skilled in working with people with dementia. That knowledge and those skills probably are more important in creating an effective linking system than any consistent differences between nurses and social workers as case managers. The fourth question concerns case management standards. The American Nurses Association, the National Association of Social Workers, the National Council on the Aging, at least one State, some State Units on Aging, and other organizations and individuals have formulated case (or care management standards (22,32,572,581). OTA has not compared those standards systematically, but a brief review indicates that they are based on similar philosophies, views about the role and functions of the case manager, and concerns about clients rights. The requirements for a national linking system might incorporate some of the core features of those standards. Fifth is the question of the appropriate role of physicians in linking people with dementia to services. As discussed in chapter 2, families and other informal caregivers of people with dementia often complain that physicians are not knowledgeable about services for people with dementia and do not refer people with dementia to appropriate services (125,257,412,479,497, 500,531,599,934). On the other hand, anecdotal evidence suggests that families and other informal caregivers may be more likely to use services if they have been referred to the
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60 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias services by a physician (291,931). The importance of involving physicians in the linking people with dementia to services and the difficulties involved in doing so, including constraints on physicians time, are discussed in chapter 2. Some commentators have suggested that people with dementia and their caregivers might be more likely to follow through on recommendations about services if the services were actually prescribed by a physician (931,944). The Alzheimers Diagnostic and Treatment Center at the University of California/Davis Medical Center has recently developed a prescription pad for this purpose to be used by physicians in the centers service area (see figure 1-3). No information is available yet about the effectiveness of this approach. A final question concerns family control and the role of families in relation to a linking system. As noted in chapter 3, families of older people frequently perform various linking functions themselves, acting as an intermediary between the older person and paid service providers (85,92,1 10,467,477,753,778). In 1988, a study was conducted for OTA in Pennsylvania to explore the question of what is special about case management for people with dementia (934). 13 Family caregivers of people with dementia who were interviewed for that study expressed a strong desire to have control over decisions about services provided for their relative with dementia. Moreover, OTAs contractors noted that the caregivers often seemed to perceive themselves, rather than the AAA case manager who arranged services for them, as the case manager. OTA does not know whether families of people with dementia are more likely than families of nondemented elderly or disabled people to want to retain control over decisions about services for their impaired relative. In any case, allowing families to retain that control to the greatest degree possible would seem to be a worthwhile objective for a Photo credit: M.P. Cordero-Aranda Some, and perhaps many, families of individuals with dementia perceive themselves as the case manager for their relative with dementia and want to retain control of decisions about services for the person. linking system. Chapter 3 discussed the role of families as co-case managers or coclients of a linking system and other issues that pertain to the relationship between families and a linking system. CONCLUSION Families and others who are caring for a person with dementia often experience great difficulty locating and arranging appropriate services for the person. To some degree, this problem reflects the lack of sufficient services in many communities, the lack of adequate funding for services, the poor quality of some available services, and the lack of training for service providers. These four issues were the focus of OTAs 1987 report, Losing a Million Minds: Confronting the Tragedy of Alzheimers and Other Dementias, and remain to be resolved in many, if not all, areas of the country. The difficulty families and others have in locating and arranging appropriate services also Isrhe re~ts of me smdy ~nducted for OTA in Pennsylvania are discussed in ch. 3. A complete report on the study is available tim the Natioti TechnicaJ Jnforrnation Semice in Sprin@leld, VA (see app. A).
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Chapter 1--Summary and Overview 61 Figure 1-3-A Prescription Form for Use by Physicians in Referring Alzheimers Patients to Community Services, 1990 RX FOR CAREGIVERS IN 916 AREA Name Dat e Information & Referra l []Del Oro RRC 971-0893 []Alzheimer's Aid Society 448-700 1 []Sutter Senior Help Line 733-388 8 []Other Community Info 442-4995 Caregiver Counseling []Del Oro RR C 971-0893 []Mental Health Assoc 456-2071 []Alzheimers Aid/Suppor t Group s 448-7001 []Othe r Community privat e practitioners psychologists psychiatrists family counselors pastors, etc. (no specifi c referral ) g & Educatio n []Del Oro RRC 971-0893 []Info from an array of provider s available at this phone number it e []Del Oro RRC 971-0893 []Sutter Davis Gues t Weekend 756-6440 []Other day care, in-home: fee fo r service unless skilled healt h care needed and Medi-Cal o r Medicare pays (no specifi c referral ) []MSSP (Medi-Cal) 734-5432 []Senior Connection (pvt) 972-111 4 []Othe r private practitioners an d home health agencies (no specifi c referral ) e Healt h Care []In-Home Support Services 732-307 7 []Othe r Home health agencies & home nursing fee for service s (no specific referral ) t Day Healt h Care []Robertson ADHC 452-2529 []Yolo ADHC/CASA 666-8828 []Health for All ADHC/R C 885-2655 (Auburn) UCD/ADDTC 4/27/90 Residentia l Ca r e []Licensin g 973-3846 []Ombudsman 366-5554 Skill e d Nursin q Faci l itie s []Licensin g 445-3281 []Ombudsman 366-5554 []Special care facilitie s (though others may als o be appropriate) : Sutter Oaks Alz. Ct r 922-7177 Hillhaven Fair Oak s 944-4312 Homestead Fair Oaks 965-466 3 Greenhaven Country Plac e 393-2550 Eligibilit y a l []Medi-Ca l 395-4551 []Social Securit y (Medicare, SSI ) 551-100 0 []Othe r Fee for service financial planning (no specifi c referral ) Plannin g []Del Oro RRC 971-0893 []Conservatorshi p 732-3827 []Other probate, elder la w practitioners (no specifi c referral ) ermen t []Geropsych Network 732-9490 []Adult Protective Svc s 732-3077 Othe r []Medic-Aler t 1-800-ID-ALERT []Nat Alzheimers Assoc 1-800-621-037 9 []UCD/ADDTC 734-5496 []UCD Brain Bank 734-2885 ***** **** Take Care of Yourself! Phone SOURCE: Alzheimers Diagnostic and Treatment Center, UniversityofCalifornia/Davis Medical Center, Sacramento, CA,1990.
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62 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias reflects several other factors, including the complexity and fragmentation of services at the community level, the difficulty of obtaining accurate information about available services and funding for services, the difficulty of coordinating the services of multiple providers, and the characteristics, feelings, and perceptions of some people with dementia and some caregivers that make them reluctant to use services, unable to define their service needs, or unable to arrange services for themselves. Even if sufficient services were available everywhere, these factors would still limit access to appropriate care for some, and perhaps many, people with dementia. Based on an analysis of the characteristics and care needs of people with dementia, their informal caregivers (if they have any), and the service environment, OTA developed a framework for an effective system to link people with dementia to services. The essential components of the system (i.e., public education, information and referral, outreach, and case management), additional criteria, and other considerations in the development of the system have been discussed in this chapter and are analyzed in greater detail in other parts of the report. Although the need for an effective system to link people with dementia to services is clear, establishing such a system will be difficult, largely because of turf issues. Many public and private agencies, organizations, individual professionals, and service providers currently link some people with dementia to services. With a few exceptions, each of these agencies, organizations, and individuals considers itself the right one to perform that function. Moreover, many of them propose to solve the problem of locating and arranging services for people with dementia by expanding their role in the area. Some of them are unaware of the efforts of the others to link people with dementia to services. Those that are aware of the others efforts tend to regard those efforts, or at least any expansion of those efforts, as duplication. OTA was surprised by the large number of agencies, organizations, and individuals that link at least some people with dementia to services. That large number is good in the sense that there are many places to which families and others can turn for help. On the other hand, in many communities, the large number of agencies, organizations, and individuals that link people with dementia to services probably results in further complication and fragmentation of the service environment. Since many agencies, organizations, and individuals that link people with dementia to services do not have an accurate list of services and sources of funding for services, some patients and families receive wrong information or only partial information about available services and funding. Establishing an effective system to link people with dementia to services will require a consolidation of the linking functions now provided by many agencies, organizations, and individuals. Some people who reviewed this report for OTA pointed out that it would be easier to establish a national system to link people with dementia to services if the system did not have to include case management, because many of the agencies and organizations that currently link some people with dementia to services provide public education and information and referrals but generally do not provide case management. Although it is undoubtedly true that a national linking system could be established more easily if it did not have to include case management, OTAs analysis indicates that some people with dementia would not be served effectively by such a system. People with dementia who are likely to need case management are those who live alone and have no relative or friend to help them, those who have an informal caregiver who is reluctant to use needed services or unable to arrange services, and those who need services from several different providers. OTAs analysis of available data indicates that at least 10 percent of people with dementia live alone and have no relative or friend to help them. These individuals and other individuals with dementia whose caregivers are
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Chapter 1--Summary and Overview 63 reluctant to use needed services or unable to arrange services will not be served effectively by a linking system that provides only public education and information and referral. Many agencies that provide services of various kinds for people with dementia provide case management in conjunction with the services i.e., service-centered case management. An individual who is receiving case management from such an agency generally would not need long-term case management from the linking system. For such an individual, the linking system might provide only short-term case management to connect the individual to the agency originally and then be available to provide further assistance, if necessary, later on. For other individuals with dementia who need services provided by agencies that do not provide case management or services provided by multiple agencies and individuals, the linking system may have to provide ongoing case management. A linking system is needed partly because of the complexity and fragmentation of services. If agencies rules about whom they serve and what they provide were simpler and more flexible and the services of different agencies were better coordinated, more families and others would be able to locate and arrange appropriate services themselves. The complexity and fragmentation of services at the community level originates to a great extent in the federally funded programs that provide or pay for services-specifically in the detailed and extensive regulations that define not only what services are covered and for whom, but also who may provide them, for how long, and in what setting. Congress repeatedly has mandated coordination among the Federal, State, and local agencies that administer these federally funded programs. Although these mandates sometimes lead to meaningful coordination, the Federal Governments own regulations often interfere with coordination at all levels of government. In addition to establishing a system to link people with dementia to services, Congress could begin to identify and reduce the barriers to coordination and integration of services caused by Federal law and Federal regulations. This might ultimately result in consolidation of various Federal programs that fund health care, mental health, social, and other services and services for elderly and disabled people. In the short term, Congress could allow States and local governments greater flexibility to pool funds and consolidate services from different Federal programs. New federally funded services could be designed with explicit recognition of the complexity and fragmentation of existing services, and new regulations could be written in away that will reduce, not increase this problem. POLICY ISSUES AND OPTIONS This OTA report discusses the need for an effective system to link people with dementia to services and presents a framework, including essential components and criteria, for such a system. Seven important policy issues with respect to the system remain to be resolved. Those policy issues and the options for congressional action are discussed in this section. ISSUE 1: Should the linking system serve people with dementia exclusively or should it serve people with dementia and people with other diseases and conditions as well? Option A: Congress could mandate the establishment of a linking system that would serve people with dementia exclusively. Option B: Congress could mandate the establishment of a linking system that would serve people with dementia and people with other diseases and conditions as well. This report identifies many special problems and concerns in linking people with dementia to appropriate services. To be effective, a linking system must be both dementia-friendly (i.e., responsive to people with dementia) and dementiacapable (i.e., staffed by people who are skilled in working with people with dementia and their caregivers, knowledgeable about the kinds of
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64 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias services that may help them, and aware of which agencies and individuals provide such services in the community). Some people believe that only a system that is dementia-specific could meet those requirements. They advocate the establishment of a linking system that serves people with dementia exclusively (option A). Other people believe that individuals with dementia and their caregivers would be best served by a linking system that is not dementiaspecific and that such a system could be both dementia-friendly and dementia-capable. One reason they advocate a linking system that is not dementia-specific (option B) is that some, and perhaps many, people with dementia are not identified as people with dementia by their families, physicians, or others. Probably this is most likely to occur if the individual has a serious physical condition in addition to his or her dementia. Families and others who do not identify the person they are caring for as a person with dementia are unlikely to contact a dementia-specific linking system for help in finding services. A second reason that some people advocate a linking system that is not dementia-specific is to avoid further fragmentation of the service environment by the introduction of another diseaseor condition-specific element. Almost all the members of the advisory panel for this OTA assessment favored option B. ISSUE 2: Should the Federal Government designate a single category of agencies to constitute the linking system nationwide or should each State be mandated to designate the agencies that will make up the system in that State? Option A: Congress could designate a single category of agencies to constitute the linking system nationwide or instruct the U.S. Department of Health and Human Services to do so. Option B: Congress could mandate that each State designate the agencies that would make up the linking system in that State. Under Option B: 1. States could be mandated to designate a single category of agencies to make up the linking system in that State. 2. States could be authorized to designate either a single category of agencies, different types of agencies, or consortia of agencies in different localities, at their discretion. As discussed earlier, OTA identified 11 categories of agencies that might be designated to perform the linking functions nationwide. They are AAAs, community mental health centers, community health centers, Alzheimers Association chapters, Family Survival Project, States regional Alzheimer diagnostic and assessment centers, hospital-based geriatric assessment programs, home health agencies, social health maintenance organizations, On Lok Senior Health Services, and adult day centers. Under Option A, Congress would designate one of those categories of agencies to constitute the linking system. Designating a single category of agencies to constitute the linking system nationwide would make the system easy to publicize, easy for families and others to remember, and readily accessible to long-distance caregivers. OTAs analysis indicates, however, that none of the 11 categories of agencies is currently capable of constituting an effective national linking system. Each of the 11 categories of agencies has positive features that would contribute to its ability to function in that capacity, but each category of agencies also has drawbacks. Chapter 8 discusses the modifications that would be needed in each of the categories of agencies to make it an effective national system to link people with dementia to services. By designating a single category of agencies to constitute the linking system nationwide, Congress would risk duplicating or disrupting existing State linking programs and State and community service systems. Moreover, there are significant variations from State to State and in different localities in the capacity of agencies of the same type (e.g., AAAs) to perform the four linking functions effectively. For these reasons, many people, including almost all the
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Chapter 1--Summary and Overview l 65 members of the advisory panel for this OTA study, believe that Congress should mandate that each State designate the agencies that will make up the linking system in that State (option B). One possible drawback to this option is that for political or other reasons, some States might designate agencies that would not create an effective linking system. It should be noted that even if option B were chosen, the agencies designated by the States would have to be identifiable in some uniform way nationally, either by a uniform logo, telephone number, or some other method, so that people would know where to go for help in locating and arranging services. ISSUE 3: Should the agencies that constitute the linking system also provide services? Option A: Congress could require that the system be composed of agencies that do not provide any services. Option B: Congress could require that the system be composed of agencies that do not provide certain services. Option C: Congress could allow the system to be composed of agencies that provide services. Some people believe that the same agency should not both link people to services and provide services because the agency may have a financial incentive to refer clients its own services, even if more appropriate services are available elsewhere. Other people believe that the linking functions are often performed most effectively by an agency that is also providing services and that patients and families prefer to have a service provider refer them to or help them locate and arrange other services. The debate about whether an agency that links people to services should also provide services seldom specifies which services. Virtually all the agencies OTA studied offer at least some of the services listed in table 1-2. Option A would eliminate all those agencies many of which effectively link some people with dementia to services-from consideration as agencies that could constitute the linking system. Option B would specify which services agencies that constitute the linking system should not provide. Congress might decide, for example, that agencies that provide nursing home or adult day care should not be part of the linking system, whereas agencies that provide diagnosis or caregiver education and training, could be part of the linking system. On the other hand, Congress could decide that agencies that provide nursing home or adult day care could constitute the linking system, but that diagnosis and caregiver education and training should not be provided by agencies that constitute the linking system. Option C would allow agencies that provide any services to constitute the linking system. In thinking about these options, it is helpful to distinguish between linking functions that are service-centered v. linking functions that are comprehensive. Service-centered case management connects people to services in conjunction with providing services for them. Comprehensive case management takes place independent of the provision of any particular services (657). Some agencies that provide services furnish only service-centered case management: that is, they generally provide case management only for people who are receiving or expected to receive their services. One of the main reasons why such agencies provide service-centered case management is that public and private programs that pay for services usually do not pay for case management for people who are not receiving or expected to receive services. Agencies that provide services can provide comprehensive case management (and presumably other linking functions), as shown by the home health care and mental health agencies that provided comprehensive case management for the National Channeling Demonstration Project (30). The experience of the National Channeling Demonstration Project indicates that case managers in agencies that provide services can be effectively insulated from finan-
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66 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias cial pressures to refer clients to services of their own agencies rather than more appropriate service of other agencies (30). ISSUE 4: Should the agencies that constitute the linking system allocate services and funding for services? Option A: Congress could mandate that the agencies that constitute the linking system be prohibited from allocating services or finding f or services. Option B: Congress could mandate that the agencies that constitute the linking system be permitted to allocate services and finding for services. Option C: Congress could mandate that the agencies that constitute the linking system be required to allocate services and funding for services. Some agencies that link people with dementia to services also allocate services and funding for services. As noted earlier, some people are opposed to having the same agency or individual case manager perform both functions because they believe the agency and the case manager will not advocate for clients and may restrict clients access to needed services in order to limit the cost to the agency of services provided for them. They would advocate option A. Other people believe that having the same agency perform both functions creates an efficient service delivery system and that clients are much more likely to receive services when an agency or case manager has services and funding to allocate than when the agency or case manager simply arranges any available services, They would advocate option C. If the linking system were to be combined with expanded long-term care benefits, the combined system would be administered by the same agencies at the community level, and option C would have to be chosen. Option B would allow whomever designates the agencies that constitute the system to designate either type of agency. ISSUE 5: Should the agencies that constitute the linking system be required to have explicit procedures for determining their clients decisionmaking capacity and making decisions about services for clients who are incapable of making decisions for themselves? Option A: Congress could require the agencies that constitute the linking system to have explicit procedures for determining their clients decisionmaking capacity and making decisions about services for clients who are incapable of making decisions for themselves. Option B: Congress could make no requirements with respect to procedures for determining clients decisionmaking capacity and making decisions about services for clients who are incapable of making decisions for themselves. Option C: Congress could direct the U.S. Department of Health and Human Services to fund research to develop model agency procedures for determining clients decisionmaking capacity and making decisions about services for clients who are incapable of making decisions for themselves. Option D: Congress could direct the U.S. Department of Health and Human Services to develop methods for training case managers and others about the legal and ethical issues involved in the way decisions about services are made and procedures for determining clients decisionmaking capacity and making decisions about services for clients who are incapable of making decisions for themselves. Option E: Congress could direct the U.S. Department of Health and Human Services to organize and support forums for analysis and debate about unresolved issues in how decisions about services for people with dementia are and should be made. Fundamental legal rights and complex legal and ethical issues are involved in the way decisions about services for people with dementia are made. Yet most agencies that link people with dementia to services do not have explicit procedures for how those decisions should be
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Chapter I-Summary and Overview 67 made. Chapter 4 emphasizes the need for explicit agency procedures for determining clients decisionmaking capacity and making decisions (or designating someone to make decisions) for people who are not capable of making decisions for themselves. Federal legislation to create a linking system for people with dementia could require that any agency that is part of the system have such procedures (option A). Option B would not require explicit procedures. Option C would direct the U.S. Department of Health and Human Services to fund research to develop model procedures. Some case managers and others who participate in making decisions about services for people with dementia are not knowledgeable about the legal and ethical issues involved in how these decisions are made. Option D would direct the U.S. Department of Health and Human Services to develop appropriate methods for training case managers and others about these issues. Some unresolved questions about decisionmaking practices, particularly the question of the relative weight to be given to the needs, preferences, and interests of the patient v. the family in decisions about services, require further analysis (see ch. 4). Option E would require the U.S. Department of Health and Human Services to organize and support forums for analysis and debate about those issues. ISSUE 6: Should the linking system concern itself with the quality of services to which it links people with dementia, and if so, how? Option A: Congress could mandate that the system not concern itself with the quality of services to which it refers people, leaving that issue to clients, families, and others. Option B: Congress could mandate that the system inform clients and their families about what, if any, information it will provide about the quality of available services. Option C: Congress could mandate that the system inform clients and their families about which agencies and individuals that provide services are licensed, certified, and/or accredited. Option D: Congress could mandate that the system refer clients only to licensed, certified, and/or accredited agencies or individual service providers. Option E: Congress system provide clients available information services. Option F: Congress could mandate that the and their families any about the quality of could mandate that the system control the quality of services to which it refers clients by contracting with providers that will meet certain standards and monitoring provider compliance with the standards. Option G: Congress could require the U.S. Department of Health and Human Services to study the legal issues involved in providing information about the quality of services to clients of a system that links people to services. This study could determine whether there is a difference in liability incurred by a public v. private agency that provides such information and whether the form or source of the information affects liability. Option H: Congress could immunize the linking system from legal liability for good faith efforts to disseminate information about the quality of services. As discussed in chapter 5, accurate information about the quality and appropriateness of services is not consistently available to families and others who are selecting services for people with dementia. For a variety of reasons discussed in that chapter, agencies and individual health care and social service professionals and others who refer people with dementia to services and select and arrange services for them frequently do not and/or cannot either provide information about the quality of the services or select services on the basis of quality. Option A would mandate that the linking system not concern itself with the quality and appropriateness of services it refers people to or arranges for
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68 l Confiused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias them. Options B through F suggest various ways in which a linking system could address the question of the quality and appropriateness of services. Option G would require the Department of Health and Human Services to study the legal issues that arise when a linking system provides its clients with information about the quality and appropriateness of services. Option H would immunize the linking system from legal liability for measures it takes to inform its clients about the quality and appropriateness of services. Options B-H are not mutually exclusive. ISSUE 7: Who should have responsibility for linking veterans with dementia to services? Option A: Congress could inundate that the VA have primary responsibility for linking veterans with dementia to non-VA services. Option B: Congress could mandate that the non-VA linking system have primary responsibility for linking veterans with dementia to non-VA services. The VA provides many services that may be helpful for veterans with dementia. The complexity of the eligibility criteria for VA services, especially as they interact with the factor of space availability, means that only the VA can finally link veterans with dementia to VA services however. A non-VA linking system could not perform that function effectively, and this OTA report does not consider that possibility. Since not all services that are needed for veterans with dementia are available through the VA, and since some veterans with dementia are not eligible for VA services, many veterans with dementia need help in locating and arranging non-VA services. Option A would assign the VA primary responsibility for linking veterans with dementia to non-VA services. Option A option would require the VA, probably through the Social Work Service at each VA medical center, to provide information and referrals to non-VA services and assistance in locating and arranging non-VA services for all veterans with dementia, including veterans who are not receiving VA services. Since the VA Social Work Service is currently able to provide case management for certain at risk veterans who are not eligible for or currently receiving VA services, it is unlikely that Option A would require statutory changes. On the other hand, Option A would undoubtedly require the addition of staff to the Social Work Service at each VA medical center. In addition, each VA medical center that does not have a comprehensive list of available non-VA services would have to develop such a list and all VA medical centers would have to adopt procedures to ensure that the list is kept up-to-date. It is also likely that VA medical centers with large catchment areas would have to assign some VA social workers to geographic areas distant from the medical center, as has been done by the Minneapolis VA Medical Center in connection with its rural case management program (see ch. 7). Lastly, the VA would have to develop outreach procedures to identify veterans with dementia who need help but are unlikely to contact the VA on their own and have no one to contact the VA for them. Under option B, the VA would be responsible for linking veterans with dementia to VA services, and the non-VA linking system would have primary responsibility for linking veterans with dementia to non-VA services. This option would probably be easier to implement than option A, since the non-VA linking system would, once established, have the capability to serve people in all areas of the country and would have to maintain an accurate resource list to serve nonveterans anyway. The drawback to Option B is the possible duplication of case management and information and referral functions for some veterans who are receiving VA services. Procedures for minimizing such duplication of effort could probably be worked out between the VA Social Work Service and the non-VA linking system.
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Part I Considerations in Developing an Effective System for Linking People With Dementia to Services
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Chapter 2 The Need for Public Education and Information and Referral
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CONTENTS Page INTRODUCTION . . . . . . . . . . . . . . . 73 CAREGIVERS VIEWS ON THE NEED FOR INFORMATION . . . . . 74 DEFICIENCIES IN CAREGIVERS KNOWLEDGE ABOUT SERVICES ...........76 The Relationship Between Caregivers Knowledge of Services and the Use of Services . . . . . . . . . . . . . . 77 The Distinction Between Service Consciousness and Service Knowledge . . 78 Implications for an Effective System To Link People With Dementia to Services 78 WHY ACCURATE INFORMATION ABOUT SERVICES AND FUNDING FOR SERVICES IS OFTEN NOT AVAILABLE . . . . . . . 80 The Information and Referral Process in Cuyahoga County, Ohio . . . . 80 Seven Reasons Why Accurate Information About Services and Funding for Services for People With Dementia Is Often Not Available . . . . . 82 Implications for an Effective System To Link People With Dementia to Services 89 WHAT IS SPECIAL ABOUT THE INFORMATION AND REFERRAL NEEDS OF PEOPLE WITH DEMENTIA . . . . . . . . . 90 Comments by Administrators of State Information and Referral programs . . 91 An Analysis of Data on Callers to the Benjamin Rose Institutes Telephone Information and Referral Program . . . . . . . . . . . 91 Findings From Interviews With Caregivers in Cuyahoga County, Ohio . . . 92 Implications for an Effective System To Link People With Dementia to Services 93 WHAT IS SPECIAL ABOUT THE INFORMATION AND REFERRAL NEEDS OF ETHNIC MINORITY PEOPLE WITH DEMENTIA . . . . . 93 Findings From a Study of Four Ethnic Minority Groups in Two California Counties . . . . . . . . . . . . 94 Implications for an Effective System To Link Ethnic Minority People With Dementia to Services . . . . . . . . . . . . 96 PHYSICIANS ROLE IN REFERRING PATIENTS AND CAREGIVERS TO SERVICES . . . . . . . . . . . 100 CONCLUSION . . . . . . . . . . . . . . . . 102 Figures Page 2-1. Caregivers Knowledge of Services in Cuyahoga County, Ohio, 1988 . . 77 2-2. Illustrations From a Foto Novela (Picture Book) on Alzheimers Disease That is Targeted to Mexican Americans . . . . . . . . . 99 Tables Page 2-1. Family Caregivers Knowledge of Six Types of Services, 1986 . . . . 76 2-2. Caregivers Opinions About Why People Do Not Use Services, Cuyahoga County, Ohio, 1988 . . . . . . . . . . . 79 2-3. Agency Representatives Opinions About Why People Do Not Use Services, Cuyahoga County, Ohio, 1988 . . . . . . . . . . . 79 2-4. The Percentage of Ethnic Minority Caregivers Who Said They Know About Certain Services, Los Angeles and San Diego Counties, California, 1988 . . 95
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Chapter 2 The Need for Public Education and Information and Referral INTRODUCTION Many factors determine whether people with dementia and their caregivers ultimately are linked to the services they need. 1 Clearly, people cannot be linked to services or sources of funding for services that do not exist. The lack of sufficient services and funding for services for people with dementia is a major public policy concern that was emphasized in OTAs 1987 assessment Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias (831). Unfortunately, the ideal of having sufficient services and funding for services is not the current reality. To avail themselves of whatever services do exist, families and others who are caring for people with dementia need accurate information about what services and funding for services are available. To plan realistically and to make informed decisions about a patients care, these caregivers also need to know what services and funding are not available. Evidence reviewed in this chapter suggests that in many cases, accurate information about the availability of services and funding for services is extremely difficult to obtain. Moreover, many caregivers are unaware of potentially helpful resources. Physicians, other health care and social service professionals, service providers, and others who work with people with dementia and their caregivers are frequently called on to advise the caregivers about services and to select and arrange services for people with dementia who have no informal caregiver to help them. In order to provide that assistance, these individuals who work with dementia patients and their caregivers also need accurate information about services and funding for services. Like families, however, they may have difficulty obtaining that information. This chapter focuses on the informational aspects of the process by which people with dementia and their caregivers are linked to services. The first section below presents information on caregivers views concerning the need for accurate information about services and funding for services. A subsequent section discusses deficiencies in caregivers knowledge about services and notes the relationship between caregivers knowledge about services and their use of services. Another section describes the information and referral process for people with dementia in a specific locality (Cuyahoga County, Ohio) and suggests seven reasons why accurate information about services and funding for services is often not available. The last three sections of this chapter address what is special about the information and referral needs of people with dementia and their caregivers, what is special about the information and referral needs of ethnic minority people with dementia, and the role of physicians in linking demented patients and their caregivers to services. At the conclusion of each major section, OTA draws implications for an effective system to link people with dementia and their caregivers to services. On some of the topics addressed in this chapter, there is little information in the general literature. As noted in chapter 1, OTA commissioned several small, exploratory studies for this assessment in order to learn more about how people with dementia are linked to services and about problems that may arise in that process. Although the findings of these studies cannot be generalized with certainty, they do provide insights into the linking process that are useful in thinking about the characteristics of a system that would effectively connect people with dementia to services. Two of the OTA-commissioned studies-one in Cuyahoga County, Ohio (186) and the other in two counties in southern California (866)pertain particularly to the informational aspects of the linking process and are discussed in some detail. 2 An important conclusion that OTA draws from the analysis in this chapter is that public education and information and referral are two essential components of an effective system to link people with dementia and their caregivers to services. Public education in this context means providing general information to help people understand dementia and the kinds of services that may be helpful for individuals with dementia. Information and referral in this context means providing inforlsee ~ble I-2 inch. I for a list of the services that may be needed for people tith dementi. Womplete reports on the OTA-commissioned studies in Cuyahoga County and in southern California are available from the NationaI Technical Information Service in Springileld, VA (see app. A).
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74 l confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias mation about and referrals to specific services and sources of funding for services in the community. Although this chapter focuses on the informational aspects of the linking process, it is important to note that some people with dementia and their caregivers are unlikely to respond to public education programs and may be unable or unwilling to contact an information and referral source on their own. OTAs analysis in chapter 3 suggests that to link some people to services, active outreach and case management are necessary. Thus, outreach and case management are also essential components of an effective system to link people with dementia to services. Accurate information about services for people with dementia includes information about the quality of services, as well as about the availability of services and funding. Families and other caregivers want the services they may use for a person with dementia to be of acceptable quality, and their perceptions about quality may influence their decisions about using the services. Because of the importance of information about quality and because of the complexity of issues involved in evaluating the quality of services for people with dementia, a full chapter of this report (ch. 5) focuses specifically on problems in obtaining information about quality. CAREGIVERS VIEWS ON THE NEED FOR INFORMATION Families and other informal caregivers of people with dementia often view the lack of accurate information about services and funding for services with frustration and consider it an important aspect of the difficulty of caring for a person with dementia. Numerous State task forces and committees that have focused on the problems of Alzheimers disease and related dementias have noted caregivers concerns about the lack of accurate information about services and funding (37,142,246,360,396,408, 497,500,530,537,592,599,870,920). 3 The Alzheimers and Related Diseases Task Force in Kansas reported, for example: Family members and caregivers pleaded at the public hearings for information about Alzheimers and related diseases. They pleaded for reliable referrals to services and easily accessible and up-todate information so they could properly plan and care for their loved ones (396). The Wisconsin Task Force on Alzheimers Disease and Other Irreversible Dementias similarly reported: Alzheimers family members often tell distressing stories about not knowing where to go for help, going from one service provider to another in a vain search for assistance, and being misinformed about availability of services or eligibility for programs (920). Echoing similar concerns, the New Jersey Alzheimers Disease Study Commission reported that the caregivers of people with dementia were all too often passed from one potential information source to another without obtaining answers and/or help in identifying specific local resources (599). One of the specific concerns that caregivers expressed to some State task forces and committees on Alzheimers and other dementias was that accurate information on eligibility for publicly funded programs such as Medicaid was lacking. The task forces in Maryland and Michigan noted that some caregivers had been given incorrect information about Medicaid eligibility (497,530). Another specific concern that caregivers expressed was the lack of information about legal and financial matters related to patient care and the difficulty of finding anyone to advise them on these matters (37,99,142,246,408,497,500,530,599). One son told the Kansas Alzheimers and Related Diseases Task Force, for example: We talked to 17 attorneys to find one who would accept the case. There is no one place or phone number that can answer specific questions. I have been told I am asking questions that no one has ever asked before (396). Lastly, families and informal caregivers told State task forces and committees that many physicians were not knowledgeable about services that might benefit people with dementia and their families and did not refer them to such services (412,479,497, 500,531,592,599). Despite the fact that some caregivers told State task forces and committees about physicians who had been helpful in referring them to support groups and other services (497,500,599), many caregivers experiences were negative. One
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Chapter 2The Need for Public Education and Information and Referral l 75 sample of 2,400 individuals, and responses were received from 569 family caregivers of people with dementia from 49 States and the District of Columbia. The responses from these 569 caregivers indicate the importance to family caregivers of information and assistance in locating services and sources of funding for services. Part of the survey questionnaire asked respondents how important they considered 11 different types of assistance in the care of people with dementia (926). The three types of assistance considered essential by the largest percentages of the 569 responding family caregivers are listed below. Two of the three (those in italics) had to do with information and assistance in locating services b f! { ; and funding for services: ; / s ,/; H*, 1. A paid companion who could come to the home $.* a few hours each week to give them a rest (68 Photo credit: M.P. Cordero-Aranda The difficulty of obtaining accurate information about services and funding for services is extremely frustrating for many family caregivers. woman in Michigan said her husbands physician gave her no referrals or other advice except to accept the fact that the patient would never be any better than he was at that time and would probably get progressively worse and take him home and learn to live with it (531). A caregiver in Massachusetts said that the demented persons physician offered no advice or any alternative other than nursing home care (500). In 1986, in conjunction with OTAs 1987 assessment of Alzheimers and other dementias, a mail survey of individuals drawn from the mailing list of the national Alzheimers Association was performed (926). 4 Survey questionnaires were mailed to a percent said that a paid companion was essential, and 96 percent indicated that it was either essential, very important, or important). 2. Assistance in locating people or organization that provide care for the patient (56 percent said that such assistance was essential, and 97 percent said it was either essential, very important, or important). 3. Assistance in applying for Medicaid, Social Security, Supplemental Security Income, etc. (54 percent said that such assistance was essential, and 94 percent said it was either essential, very important, or important) (926). Another study of 59 black family caregivers of people with dementia in Cleveland, Ohio, had similar findings (750). Asked what help they needed to care for their relative with dementia, the caregivers in this study said they needed the three things listed below. One of these (the item in italics) had to do with information about services and funding for services: 1. Affordable respite services. 2. Counseling to help resolve family conflicts about the patients care. 3. Information about Alzheimers disease, available community resources, and sources of legal and financial assistance. 4A ~mplete ~epofi on @e 1986 ml ~uw conducted in conjunction wi~ ()~s asses~ent is available horn tie National TIX~Cd hfOMMtiOll Service in Sprin@eldj VA (see app. A).
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76 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias DEFICIENCIES IN CAREGIVERS KNOWLEDGE ABOUT SERVICES Many caregivers of people with dementia have limited knowledge about the availability of services that may benefit a person with dementia. One of the questions in the 1986 mail survey just mentioned pertained to caregivers knowledge of services in their communities (926). As shown in table 2-1, the percentage of the 569 family caregivers who said a service was available or not available varied, depending on the service in question. The important finding for the discussion here, however, is that, depending on the particular service in question, between 31 and 55 percent of the responding caregivers said they did not know whether the service was available. Another survey of family caregivers in 16 States asked the caregivers if they knew of any services (excluding support groups) for people with dementia in their community (117), Although 43 percent of the 597 responding caregivers said they knew of at least one community service and 21 percent said they were certain that no services were available in their area, 36 percent of the responding caregivers said they did not know whether any services were available. Since the sample of family caregivers for this survey was drawn from the mailing lists of family support groups-and family support groups often provide caregivers with information about services (245,256,294)-the fact that more than one-third of the survey respondents did not know whether services were available in their community is surprising and indicates the extent of the problem of caregivers lack of knowledge about services. A third study of 93 family caregivers of people with dementia in Michigan also asked the caregivers about the availability of services in their communities (138). Depending on the particular service in question, 14 to 58 percent of the responding caregivers said they did not know whether the service was available. Older caregivers were more likely than younger caregivers to say they did not know whether services were available. Caregivers who were depressed (as shown by responses to a widely used depression questionnaire) were less likely than other caregivers to know whether services were available. Table 2-lFamily Caregivers Knowledge of Six Types of services, 1986 (N = 569) As far as you know, is it possible where you live to obtain the services of Service Yes No Dont know Paid companion/ home health aide.. . . 52% 17%2 31% Visiting nurse . . . . 55 11 34 Nursing home care . . 23 36 41 Adult day care . . . 31 26 43 Respite care . . . . 23 26 51 Domiciliary/boarding care . 16 29 55 SOURCE: Yankelovich, Skelly and White/Clancy, Shulman, Inc., Caregivers of Patients With Dementia, contract report prepared for the Office of Technology Assessment, U.S. Congress, Washington, DC, April 1986. As mentioned earlier, OTA commissioned an exploratory study in Cuyahoga County, Ohio, to shed light on the process by which people with dementia are linked to services and the problems that may arise in that process (186). 5 That study in Cuyahoga County included in-depth interviews with 26 caregivers who contacted the telephone helpline of the Cleveland Alzheimers Association Chapter between April and July 1988-6 spouses, 14 adult children, 4 other relatives, and 2 friends of a person with dementia. As part of the interview conducted for OTA, each of the 26 caregivers was read a list of 20 services that might be needed for a person with dementia and asked two questions with respect to each service: 1) whether he or she had heard of the service, and 2) whether he or she knew who provided it in Cuyahoga County. As shown in figure 2-1, the only services that more than 75 percent of the 26 caregivers had heard of were home-delivered meals, adult day care, support groups, and in-home skilled nursing care (186). The remaining 25 percent of the caregivers were not familiar with these four services, and even more caregivers were not familiar with other services such as counseling, referral services, homemaker services, and case management. For many of the services on the list, a majority of the 26 caregivers interviewed could not identify specific providers. There were no services for which more than 65 percent of the caregivers could identify a specific provider. Only half of the caregivers said they could identify a specific provider of referrals or education and information programs on dementia. Only one-third said they could identify a specific 5AII of the components of the study in Cuyahoga County, Obio, are described ti app. A.
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Chapter 2-The Need for Public Education and Information and Referral l 77 Figure 2-l-Caregivers Knowledge of Services in Cuyahoga County, Ohio, 1988 Percent Home-delivered meals Adult day oare Support groups In-home skilled nursing care Medical diagnosis Counseling Homemaker, companion, etc.. Education and Information Referral service Live-in caretaker Institutional respite Transportation Emergency response system Congregate meals Legal services Occupational or physical therapy Recreational services Chore services Case management Telephone reassurance Have heard of l ervice Percent 1 65 1 50 1 I 54 1 35 t 1 64 I 6 0 1 12 1 36 38 31 38 31 1 27 23 1 12 19 4 Know who provides this service after being told what the l ervice is l includes sitter or home health aide SOURCE: S. Eckert and K. Smyth, Methods of Locating and Arranging Health and Long-Term Care Services for Persons With Dementia, contract report prepared for the Office of Technology Assessment, :U.S. Congress, Washington, DC, 1988. provider of homemaker, companion, sitter, or home health aide services. The caregivers of people with dementia who were interviewed in the exploratory study in Cuyahoga County may not be representative of caregivers of people with dementia across the country or even caregivers in Cuyahoga County. That all 26 of them were in contact with an Alzheimers Association chapter suggests that these caregivers may be more knowledgeable about services than caregivers in general. Nevertheless, the fact that many of these 26 caregivers were unaware of services suggests that lack of knowledge about potentially helpful services is a significant problem among caregivers. The Relationship Between Caregivers Knowledge of Services and the Use of Services Not all families and other informal caregivers who know about services use them. The 1986 mail survey of family caregivers that was commissioned by OTA as part of its 1987 assessment of Alzheimers and other dementias found that, depending on the service in question, 32 to 61 percent of the family caregivers who knew about a service had used or were using the service (926). The previously mentioned survey of 597 family caregivers of people with dementia in 16 States found that 58 percent of the caregivers who knew about any community services had used at least one of them (1 17). To learn more about what factors determine whether caregivers of people with dementia use services and how caregivers knowledge of services affects their use of services, the contractors who conducted the study in Cuyahoga County asked the 26 caregivers they interviewed to give their opinions about why people do not use services (186). Each caregiver was read a list of 14 possible reasons why people might not use services and asked: 1) whether and how often each was a reason why people in general did not use a service; and 2) whether it was a reason why they themselves did not use the service. As shown in table 2-2, the reason for not using services that was identified most frequently by the 26 caregivers in Cuyahoga County-both for people in general and for themselves-was lack of knowledge about what services are available (186). The reason second most frequently identified by the caregivers for themselves was inability to afford the services. The reason second most frequently identified by the caregivers for people in general was lack
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78 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias of knowledge about how to make arrangements to use services. In addition to including interviews with caregivers, the study conducted for OTA in Cuyahoga County, Ohio, included in-depth interviews with representatives of 24 agencies in the county that provide information and referrals for people with dementia--4 hospitals, 2 home care agencies, 4 county and city government offices on aging, the county human service agency, 3 private social service agencies, 5 senior centers, 2 multiservice agencies, the county public library, the county information and referral agency, and a community mental health center (186). Each of the agency representatives was given a list of 15 possible reasons why people might not use services and asked to give his or her views on how often each reason keeps people with dementia and their caregivers from using services. As shown in table 2-3, clients lack of knowledge about the availability of services was idenified as often or occasionally a barrier to service use by all 24 agency representatives in Cuyahoga County, Ohio (186). There are many reasons why people do not use services. Barriers to the use of services that pertain to the personal characteristics or perceptions of people with dementia and their caregivers are discussed in chapter 3. The main point here is that the 26 informal caregivers and 24 agency representatives interviewed in the study in Cuyahoga County, Ohio, identified peoples lack of knowledge about services as the single most important barrier to the use of available services. Lack of knowledge about services was identified as a barrier to the use of services more often than any other factor, including the ability to pay for services. Although the results of the study in Cuyahoga County cannot be generalized with any certainty given the small sample sizes and other aspects of the study, they do suggest that lack of knowledge about services among the caregivers of people with dementia is an important barrier to the use of available services. The Distinction Between Service Consciousness and Service Knowledge In thinking about the problem of caregivers lack of knowledge about services, it is useful to distinguish between: general awareness of services, which some researchers call service consciousness; and knowledge about a specific service, including who provides it in a community, which some researchers call service knowledge (431). As shown in figure 2-1, the study conducted for OTA in Cuyahoga County, Ohio, made that distinction explicitly and found that many of the 26 caregivers interviewed there not only lacked service knowledge (i.e., did not know of specific providers of services in the community) but also lacked service consciousness (i.e., had never even heard of some types of services) (186). Most of the other studies that have investigated caregivers knowledge of services have not drawn any distinction between service consciousness and service knowledge; and the questions they have asked seem to pertain more to service knowledge than to service consciousness. Despite the fact that most studies have not focused on it, caregivers lack of service consciousness is an important aspect of the overall problem of caregivers lack of knowledge about services. People who are generally aware of potentially beneficial services are likely to search for information about the availability of a specific service in their community when the need arises (43 1); people who are not generally aware of services are unlikely to search for that information. Implications for an Effective System To Link People With Dementia to Services Since caregivers lack of knowledge about services is at least one of the major reasons that people with dementia and their caregivers do not use services, an effective system to link people with dementia to services must find ways of increasing caregivers knowledge about services. In order to increase caregivers knowledge of services, a linking system must seek to enhance both caregivers general awareness of the kinds of services that may be helpful (i.e., service consciousness) and their knowledge of specific service providers (i.e., service knowledge) (186). Caregivers service consciousness can be increased by public education programs and materials such as those that have been developed by the Alzheimers Association, other voluntary associations that represent people with Alzheimers, Huntingtons, or Parkinsons disease, or stroke, and some State and local government agencies. Public educa-
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Chapter 2-The Need for Public Education and Information and Referral 79 Table 2-2-Caregivers Opinions About Why People Do Not Use Services, Cuyahoga County, Ohio, 1988 (N = 26) How often is it true Is this a reason you for people in general? did not use services? Possible reasons why people do not use services usually Yes People dont know what services are available . . . . . . . 73% 81% People know what services are available but dont know how to make 42 50 arrangements to use them . . . . . . . . . . People cant afford to pay for services . . . . . . . . . 38 73 People dont think they need the services recommended to them . . . 38 50 People dont use the services because they do not want to lose their independence . . . . . . . . . . 38 19 The system of services for people with dementia and their families is too complicated for people to figure out . . . . . . . 35 46 People dont recognize the fact that they need services . . . . . 33 42 The kinds of services needed by people with dementia and their families arent available in the areas where some people live . . . . . 31 50 Some services needed by people with dementia and their families just arent available . . . . . . . . . . . . 31 54 People dont have transportation to services. . . . . . . . 27 35 Using services makes people feel uncomfortable . . . . . . 27 31 Agencies that provide information about services and make referrals dont know enough about what services are available . . . . . . 27 42 People are afraid others will not approve if they use services. . . . 19 19 People have money but are not willing to pay for services . . . . 3 8 SOURCE: S. Eckert and K. Smyth, Methods of Locating and Arranging Health and Long-Term Care Services for Persons With Dementia, contract report prepared for the Office of Technology Assessment, U.S. Congress, Washington DC, 1988. Table 2-3-Agency Representatives Opinions About Why People Do Not Use Services, Cuyahoga County, Ohio, 1988 (N = 24) How frequently does each barrier keep potential clients from using services? Possible barriers Often Occasionally Clients dont know that services are available . . . . . . . . . . 75% 25% Clients do not have adequate financial resources to pay for the service. . . . . 71 16 Clients desire to remain independent of the formal care system . . . . . . 58 33 Services arent available in some geographic areas . . . . . . . . . 58 29 Clients dont recognize they need formal services . . . . . . . . . 54 42 Clients dont have transportation to the service . . . . . . . . . . 54 25 The service system is too complex or fragmented for people to use . . . . . 48 30 Clients dont know how to access services once theyve found theyre available . . . 42 46 Clients feel the recommended service is not needed . . . . . . . . 38 46 Clients are uncomfortable using recommended services a . . . . . . . 38 38 Needed services arent offered for dementia clients . . . . . . . . . 33 29 Persons providing information and referral dont have comprehensive knowledge about what services are available . . . . . . . . . . . . 28 42 Clients are judged to have adequate financial resources but are unwilling to pay for services 16 42 Clients think others will disapprove of their using the recommended service . . . 12 29 Clients schedules or competing demands prevent their use of services. . . . . 4 29 a One respondent (4 percent) did not answer this question. bhreer@ondents(12 percent) did not answer this question. SOURCE: S. Eckert and K. Smyth, Methods of Locating and Arranging Health and Long-Term Care Services for Persons With Dementia, contract report prepared for the Office of Technology Assessment, U.S. Congress, Washington DC, 1988. tion programs and materials inform people about The detailed information that people need in order dementia and about the kinds of services that maybe to select and arrange a particular service can be made helpful for people with dementia; they generally do available through information and referral pronot give detailed information about specific agengrams. Information and referral programs can only cies or individual service providers, although they assist people who contact them, however, and frequently do give a telephone number to call for people who are unaware of services are unlikely to such information. call. This observation underscores the point made
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80 l Confused Minds, Burdened Families: Finding Help for People with Alzheimers & Other Dementias earlier that an effective linking system must include public education as well as information and referral. WHY ACCURATE INFORMATION ABOUT SERVICES AND FUNDING FOR SERVICES IS OFTEN NOT AVAILABLE There are many anecdotes about the difficulty of obtaining accurate information about services and funding for services for people with dementia. To OTAs knowledge, however, the only research on the number and types of agencies that provide information and referrals for people with dementia and their referral procedures is the exploratory study conducted for OTA in Cuyahoga County, Ohio (186).6 The following discussion presents the Cuyahoga County studys findings about the information and referral process for people with dementia in the county, identifies seven reasons why accurate information about services and funding for services is often not available, and discusses the implications of those findings and reasons for an effective system to link people with dementia to services. Although the findings in Cuyahoga County are not necessarily generalizable to other localities, they do provide a context and a basis for thinking about the problem of lack of accurate information about services and funding for services. OTA would like to emphasize that no criticism of Cuyahoga County is intended by any part of the discussion in this report. In fact, Cuyahoga County is known for its commitment to aging and human services and for the recent efforts of many organizations and individuals there to improve services and service delivery for people with dementia. Whatever problems in linking people with dementia to services can be noted in Cuyahoga County, therefore, are likely to be worse in other parts of the country. OTA is grateful to the agencies in Cuyahoga County for their participation in its study, which provides the only available data on some aspects of the information and referral process for people with dementia. Photo credit: Bill Adams Public education materials such as these fact sheets on Alzheimers disease and caregiving can increase caregivers knowledge about dementia and about the kinds of services that maybe helpful for a person with dementia. The Information and Referral Process in Cuyahoga County, Ohio In 1987, OTAs contractors mailed a survey questionnaire to 324 public and private agencies in Cuyahoga County, Ohio, that the contractors thought might provide information and referrals or services of any kind for people with dementia (186). Ninety-seven (30 percent) of the 324 agencies responded. OTAs contractors did not make any attempt to obtain information about the 227 agencies that did not respond to the survey questionnaire. Of the 97 agencies that responded to the survey in Cuyahoga County, 84 indicated that they did in fact provide information and referrals and/or services for people with dementia-8 hospitals, 9 nursing homes, 11 home care agencies, 2 adult day centers, 10 local government agencies, 3 social service agencies, 21 senior centers or programs, 2 multiservice agencies, 10 referral agencies, and 8 other types of agencies (186).
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Chapter 2The Need for Public Education and Information and Referral l 81 Of these 84,75 agencies (including agencies of all the types just listed) indicated that they do provide information and referrals for people with dementia in Cuyahoga County. Some of the 75 agencies (e.g., referral agencies) provide information and referrals as their primary function, and others (e.g., hospitals, nursing homes, senior centers) provide information and referrals as a secondary function. Sixty-three of the 75 agencies said that they provide information and referrals for people with dementia who are not receiving any services from the agency; presumably, the other agencies provide information and referrals only for people with dementia who are receiving services from the agency. As noted earlier, OTAs contractors conducted in-depth interviews with representatives of 24 of the 75 agencies that said they provide information and referrals for people with dementia (186). According to these agency representatives, many of the 24 agencies provide information and referrals for people with dementia both over the telephone and in person. They tell people about available services and give them the names and telephone numbers of specific service providers. Many of the agencies also hand out or mail printed educational materials, including Alzheimers Association brochures, other pamphlets and articles on dementia, lists of nursing homes and other types of agencies, and the names and telephone numbers of agencies and contact people within those agencies. One agency representative noted, We send them anything we can think of to get the information across. Only about half the 24 agency representatives interviewed in Cuyahoga County said that their agencies provide information about funding for services (186). With a few exceptions, the agencies that provide it furnish information pertaining only to funding for their own agencys services. Only 1 of the 24 agency representatives was from an information and referral agency per se (186). The other 23 agencies do not provide information and referrals as a primary function but often provide information and referrals as a byproduct of intake for their own services-that is, if a person who contacts the agency is not eligible for the agencys services or needs services the agency does not provide, he or she is referred to another agency. Other than the information and referral agency, most of the 24 agencies do not consider a person for whom they provide telephone information and referrals to be their client (186). Thus, a person does not become a client of the agency until he or she is linked to a service provided by the agency. Most of the 24 agency representatives said their agencies will provide information and referrals to anyone, even if the person needing assistance is not a client in this sense, but they seem to regard the information and referrals they provide for people they do not consider clients as an informal community service rather than a formal function of the agency. The 24 agency representatives were asked what criteria their agency used to select a provider once the agency had determined that a person needed a particular service (186). The criteria named most frequently were the persons financial situation and the location of the service (8 mentions each). Other criteria mentioned were the providers reputation and past performance (7 mentions); the patients or familys needs, characteristics, and/or willingness to accept a provider (6 mentions); and the agencys informal affiliations with various providers (4 mentions). Eighteen (75 percent) of the 24 agency representatives indicated that their agencies sometimes refer potential clients to other agencies for a service even though their own agency provides the service (186). Among the reasons for interagency referrals, geographic location was the most frequently cited. Other reasons included the referring agencys inability to accept new clients; patient or family preference; the patients ineligibility for services from the referring agency (e.g., too young); agency rules or interagency agreements that certain categories of people (e.g., those in need of protective services) should be referred automatically to another agency; and financial considerations. Some of the agency representatives said that clients are referred from one agency to another when third-party reimbursement for a clients care is no longer available to the first agency (186). They said that this practice is common when a client of a home care agency is hospitalized: when the person is discharged from the hospital, the hospitals home health care agency often provides care until thirdparty reimbursement runs out; then the person is referred back to the original agency for ongoing care. One item of particular interest in this OTA assessment is how agencies that provide information and referrals for people with dementia keep current
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82 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias on what services are available. In the study in Cuyahoga County, OTAs contractors gave all of the 24 agency representatives a list of ways in which one might stay up-to-date and asked them which ways were used in their agency (186). The largest number of agency representatives (19 agencies or 79 percent) reported that their agencies use the Cleveland Alzheimers Association Chapter to keep current on what services are available for people with dementia. (Interestingly, the perception of the staff of Cleveland Alzheimers Association Chapter office is that very few agencies call the chapter for service information, Since the study in Cuyahoga County was conducted under the auspices of the Cleveland Alzheimers Association Chapter, it is difficult to know how many agencies actually use the chapter to keep current and how many just gave the answer they thought the researchers wanted to hear.) The majority of the 24 agency representatives interviewed in Cuyahoga County reported that their agencies use the countywide information and referral agency, local government offices on aging, Clevelands Federation for Community Planning, and information supplied by other service providers to keep current on what services are available for people with dementia (186). Some of the agency representatives said that staff of their agencies keep current by attending health fairs, seminars, workshops, and committee and board meetings or through newsletters and published directories. All 24 agency representatives reported that staff of their agencies use informal friendships or association with other agency staff to keep current on what services are available for people with dementia (186). On the basis of agency representatives comments during the interviews, OTAs contractors concluded that informal networking is probably the primary way that agency staff members keep current on services for people with dementia. Staff members not only learn about specific services that way, but they also establish relationships with staff of other agencies that are invaluable later when they are trying to arrange services for a client. All 24 agency representatives said their agencies initiate contacts with other service providers for at least some of the people for whom they provide information and referrals, but only 1 of the agencies initiates such contacts routinely (186). Other agencies encourage people to make their own contacts with agencies to which they are referred. Some agencies only initiate contact with other agencies if the person needing assistance is considered a client. Often, a decision about who should make the contact is based on staff judgment about the patients or familys ability and willingness to make the contact. One of the 24 agency representatives referred to the process of agency-to-agency contact as babying people who are afraid of making their own contacts. Finally, although most of the 24 agency representatives interviewed in Cuyahoga County said their agencies follow-up on some referrals to ensure that needed services are obtained, few agencies have systematic followup procedures. Some agencies ask the patient or family and the other provider to report back on the success or failure of a referral, but if these individuals do not report back, they are not contacted systematically by the agency. Seven Reasons Why Accurate Information About Services and Funding for Services for People With Dementia Is Often Not Available OTAs analysis of information and referral procedures and agencies in Cuyahoga County, Ohio, suggests that there are at least seven reasons why accurate information about services and funding for services for people with dementia is often not available. The seven reasons are highlighted in the discussion that follows. OTAs informal discussions with members of the advisory panel for this assessment and with numerous other people who work with dementia patients and their families indifferent communities suggest that the same reasons are applicable in many areas of the country beyond Cuyahoga County. At the start of this assessment, OTA staff expected that the biggest problem families and others confront in trying to obtain accurate information about services and about funding for services for people with dementia would be the lack of information. In the course of the assessment, however, OTA found that wrong information and partial information may be at least as big a problem as the lack of information. Caregivers or others who contact an information and referral source and receive no information may continue to search for assistance from other information sources. People who receive wrong information-for example, those who are told, There are no services, when, in fact, there are services-may just accept the information as correct and not even try to contact another source of
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Chapter 2The Need for Public Education and Information and Referral l 83 information. Likewise, people who receive partial information-for example, those who are told, There is an adult day care center 30 miles from here, when, in fact, there is another center much closermay accept what they have been told, only to discover much later that there were other options. The origins of wrong and partial information about services and funding for services are identified in the following discussion. 1. Because there are many potential providers of services for people with dementia and because the services they offer change from time to time, it is difficult for anyone to maintain an up-to-date list of available services. In the exploratory study in Cuyahoga County, Ohio, OTAs contractor sent a questionnaire to 324 agencies that they thought might provide information and referrals or services of any kind for people with dementia (186). Of the 97 agencies that completed survey questionnaires, 84 agencies said they did in fact provide information and referrals and/or services for people with dementia. It is likely, given the diverse needs of people with dementia and their caregivers, that a good number of the 227 agencies that did not respond to the survey are also potential sources of assistance. In addition, many voluntary associations and individual professionals to whom the questionnaire was not sent are potential service providers for people with dementia. The fact that there are many potential service providers does not mean that enough services are available or that dementia patients needs can be met. The study in Cuyahoga County did not address the many details about an agencys services that determin e whether the services are really available to a particular patient and whether they meet his or her needs. Those details, which affect the availability of services from agencies in all parts of the country, not just Cuyahoga County, include: an agencys general eligibility criteria and any additional eligibility criteria for a specific service; the exact nature of the service; when and where the service is provided and for how long; what the service costs; and whether there is any source of funding for the service other than client fees. These kinds of details often reflect regulations and requirements associated with the agencys funding source (e.g., Medicare, Medicaid, State programs). They may also reflect State or local government licensing or certification requirements and the mission, objectives, and history of the agency (391,481,641,821,83 1). The details of an agencys services change from time to time, often in response to changes in the requirements of the agencys funding sources (641, 821,922). Federal, State, and local governments and private associations and foundations initiate new services and terminate others. Publicly and privately funded research and demonstration projects that provide services also begin and end. These changes may increase or decrease the availability of services. Since they also affect an agencys overall budget, these changes may also determine the total volume of services an agency can provide. Some of the changes in agencies services are small, but their cumulative impact is to create a constantly changing service environment. Agencies may continue to exist with the same name and in the same location, but the services they provide change in ways that make them more or less available, appropriate, accessible, and affordable for different kinds of people. Keeping track of all these changes in order to maintain an up-to-date list of available services is difficult and time-consumin g. Yet such a list is an essential component of an effective system for linking people to appropriate services. Home care services generally change more frequently and are more difficult to keep track of than nursing home services. Most patients and families prefer home care to nursing home care, however, and so it is important to keep lists of home care services up-to-date. As awareness of Alzheimers disease and other diseases that cause dementia has increased in recent years, new services designed specifically for people with dementia have been and continue to be developed in many communities. At the same time, research and demonstration projects established several years ago and other time-limited programs that provide services for some people are ending. Thus, the constant change that characterizes the service environment in general is probably even greater for services designed specifically for people with dementia.
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84 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias Photo credit: N Winter To connect people with dementia to appropriate services, a linking system must have an accurate, up-to-date list of available services that includes all the kinds of services that may be needed for a person with dementia. The number of potential service providers, the many details that determine whether their services are available and appropriate for a particular patient, and the constant change in services contribute to the difficulty families and others face in obtaining accurate information about services. It is easy to understand in this context why people sometimes receive wrong information or partial information about available services (324,641,821,939). The need for an accurate resource list and the difficulty of maintaining it are also clear. Some areas of the country have fewer service providers than Cuyahoga County, Ohio, and some have more. In areas with fewer providers, maintaining an up-to-date resource list is less difficult but equally important for linking people to appropriate services. In many communities, one or more agencies compile and update resource lists that may include all available services, certain types of services, or services for certain client groups. In some communities, the area agency on aging (AAA) or a local government office on aging maintains a list of services for elderly people. Lists compiled by these groups are not always complete or accurate with respect to services that may be needed for people with dementia, however. That observation is illustrated by the fact that in 1985, the Georgia Alzheimers Disease Study Committee requested that the States AAAs provide an inventory of services that might be used for people with dementia; the committee subsequently found that the inventories it received from the AAAs varied widely in their completeness and accuracy to the extent that additional editing, followup, and refinement of responses [were] needed before they could be used (246). Other State task forces and committees have not commented specifically on the completeness or accuracy of resource lists in their States, but some have noted that an accurate list is needed, and some have attempted to compile such a list, thus suggesting that the lists available to them were not adequate (37,142,360,396,497,500,538,599,713,790).
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Chapter 2The Need for Public Education and Information and Referral l 85 To maintain an accurate list of services requires a continuing commitment of resources. Computers and available software packages greatly facilitate the task, but whoever is maintaining the list must commit the time needed to keep track of changes, identify new services, and update the database. Government agencies and private groups sometimes pay for the development of a resource list on a one-time basis but fail to commit resources for updating it (259). As time passes, families and others that contact providers on the list fund that some services have changed or are no longer available. New services may not be on the list at all. Without continual updating, the list itself can become a source of wrong or partial information. 2. A large number of agencies and individuals provide information and referrals for people with dementia, but many of them do not have an accurate resource list or other effective methods for keeping up to date on available services. The study conducted for OTA in Cuyahoga County, Ohio, illustrates that a given area may have many sources of information and referrals for people with dementia (186). Of the 97 agencies that responded to the survey questionnaire that OTAs contractors sent to public and private agencies in the county, 75 indicated that they provide information and referrals for people with dementia. It is possible that some of the 227 agencies that did not respond to the survey also provide information and referrals. Furthermore, some of the voluntary associations and individual professionals who were not included in the agency survey may also provide information and referrals for people with dementia in Cuyahoga county. From their interviews with 24 agency representatives in Cuyahoga County, OTAs contractors determined that, in general, agency staff keep up to date on available services through informal contacts and active networking-a process one agency representative called hustle (186). In the view of these contractors, the reliance of agency staff on informal contacts and relationships to keep current cannot be overstated. OTAs contractors found, however, that many of the agency representatives lacked a broad knowledge of available services, and the contractors concluded that although informal networking may be a valuable source of information about services, it is not sufficient by itself in a complex service environment, such as that found in Cuyahoga County and many other parts of the country. To maintain an accurate list of services for people with dementia and their caregivers is difficult, as discussed earlier, and many agencies that provide information and referrals for people with dementia are unlikely to be able to commit sufficient staff time to maintain such a list. Individual physicians, other health care and social service professionals, and service providers who refer dementia patients and their families to services are also unlikely to be able to maintain an accurate resource list. A survey of 10 Alzheimers Association chapters conducted for OTA in 1988 found that the chapters generally did not have systematic procedures for maintaining a comprehensive resource list (484). 7 The large number of agencies and individuals that provide information and referrals for people with dementia, often without an accurate resource list, increases the likelihood that patients, families, and others will receive wrong information or partial information about available services. Given this problem, it would seem desirable to have a single agency in each community designated-to maintain a list of available services and to allow other agencies and individuals easy access to the list. For such a system to function effectively, all agencies and individual service providers would have to be committed to it. Ideally, agencies and individual providers would share a database that they could access by telephone or through periodic receipt of updates on a magnetic storage medium (186). 3. Many agencies do not track the people they serve by either diagnosis or condition and therefore do not identify people with dementia; people with dementia who are not identified as such are unlikely to receive appropriate information or referrals. People with dementia must be identified as such if they and/or their caregivers are to receive appropriate information and referrals. Very few of the agencies in Cuyahoga County that responded to the initial questionnaire or were interviewed keep records on the people they serve by either diagnosis or condition (186). Most of these agencies do not keep such records either on people for whom they provide 7see & 8 for a discussion of the survey of 10 Alzheimers &sOCtition c~pt~s.
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86 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias telephone information and referrals or on people who receive services from the agency. A study of Massachusetts agencies that offer information and referrals and home care services found that these agencies also did not track the people they serve by either diagnosis or condition (756). The fact that an agency does not track people it serves by their diagnosis or condition does not prove that the individual social worker, nurse, or other information and referral agent at the agency is unaware of the persons diagnosis or condition. It suggests that this could be the case, however. If a person with dementia is not identified as such by an information and referral agent, the person will not be referred for specialized services even if the services are available and appropriate for his or her needs. Furthermore, printed materials about dementia and caregiving techniques that could be helpful to the persons caregiver are unlikely to be provided; and common characteristics and care needs of people with dementia that influence the kinds of services they need may not be recognized. It is important to note that some agencies do identify clients by their diagnosis or condition. Examples are Alzheimers Association chapters, other voluntary associations that serve people with Alzheimers, Huntingtons, or Parkinsons diseases or stroke, and Alzheimers diagnostic and assessment centers. 8 4. The location of services is often an important factor in caregivers decisions about service use, but agencies making referrals do not always consider location. Many of the 26 caregivers of people with dementia who were interviewed by OTAs contractors in Cuyahoga County indicated that the location of a service influenced their decision about using the service (186). Many of the 24 agency representatives interviewed in Cuyahoga County also identified the location of services as a factor that affects use. For some patients and families, location is of concern because they do not have a car or other means of transportation. For others, location is of concern because there is a possibility that the person with dementia may become agitated on a long ride, and this prospect may discourage families from using services (488). Some communities are so small that the location of services may not significantly affect caregivers decisions about their use. In other communities, there is no choice of service providers because only one provider exists. In communities where there is a choice, however, it would be helpful to patients and caregivers if the referrals they got included the names of providers near their homes. Making such referrals requires the availability of a comprehensive resource list and may require special formatting of the list to identify providers in specific locations. 5. There are many potential sources of funding for services. Complex rules for each source make it difficult for anyone to provide accurate information about funding in general and even more difficult to provide information that is relevant to the service needs of a particular patient. About half of the 97 agencies that responded to the initial survey questionnaire in Cuyahoga County indicated that they do provide information about funding for services, but the information that most of them provide pertains only to funding for their own agencys services (186). Few of the agencies responding to the survey indicated that they offer benefits counseling (i.e., information about various sources of funding for services and how and where to apply for benefits). The OTA contractors who conducted the study in Cuyahoga County concluded that benefits counseling is difficult to provide (186). One of the reasons it is difficult is that there are many potential sources of funding for services. Many Federal, State, and local government programs, private agencies, and voluntary and charitable organizations pay for some services that may be needed for people with dementia. Furthermore, some people have private insurance that covers some services. It is important to emphasize that the fact that there are many potential sources of funding for services does not mean that adequate funding is available. Each funding source has rules that limit the availability of funds by restricting who is eligible and what services are covered. Eligibility may be restricted on the basis of a persons age, income, assets, diagnosis, physical or mental condition, residence, family composition, and other factors. Coverage may be restricted by rules about the type of service that can Wegional Alzheimers diagnostic and assessment centers are discussed in ch. 8.
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Chapter 2The Need for Public Education and Information and Referral l 87 be paid for; the profession, training, and licensure of a person who can be reimbursed for providing the service; the setting in which it can be provided, and its duration and frequency (124,391,641,831). The rules in each of these areas are interrelated, so that a particular service is paid for only if it is provided to a patient with a certain diagnosis or condition, by a certain provider, in a certain setting, for a given time period. It is often unclear whether a person with dementia will be eligible for services paid for by certain programs-especially programs like Medicare and Medicaid that have eligibility and coverage requirements related to a persons physical condition and physical care needs. Although many people with dementia are determined to be ineligible for funding for services through these programs (124,186,831), other people with dementia do receive services paid for by these programs. This situation may arise because of real differences in the physical condition and physical care needs of different patients. On the other hand, it may arise because of differences in the way a patients condition and care needs are described on an application or billing form or because of different interpretations of a programs regulations by its administrators. The eligibility and coverage requirements for services paid for or provided by the U.S. Department of Veterans Affairs (VA) are particularly complex and difficult for non-VA information and referral sources to understand or explain to caregivers. 9 To further complicate an already confusing situation, the eligibility and coverage requirements of all finding sources change from time to time. Overall funding levels also change, and so the total amount of available assistance varies over time. The large number of potential sources of funding for services, the complexity of their eligibility and coverage requirements, changes in the rules and overall funding levels, and uncertainty about whether a person with dementia fits within the eligibility and coverage requirements make it extremely difficult for anyone to provide accurate information about available funding (186,641,790). It is easy to understand in this context why families and others receive wrong, partial, or no information about potentially beneficial funding sources. United Seniors Health Cooperative, a nonprofit organization in Washington, DC, has developed a computerized service that identifies an elderly persons potential eligibility for more than 50 local, State, and Federal funding programs (799). This service, called the Benefits Outreach and Screening Service, is a promising approach to making available accurate information about funding for services. To use the Benefits Outreach and Screening Service, an individual completes a questionnaire about his or her finances, medical condition, and other information. That information is then fed into a computer, which reviews the available funding programs, identifies benefits the person may be eligible for, and prints out a list of those benefits and instructions on how and where to apply for them. The software package for the service has been purchased by a consortium of human service agencies in Buffalo, New York, and by agencies in 15 other areas of the country, including AAAs in Virginia and county government agencies in Wisconsin. As of late 1989, the software was being adapted for use in New York State, where it will not only identify benefits the person maybe eligible for but also print out completed applications for six publicly funded programs (799). 6. The terms used for many services that may be needed for people with dementia are new to families and others. If families and other caregivers do not understand what the services are, information about the availability of these services is meaningless to them. For various reasons, the terms used for many services that could benefit people with dementia may not be understood by families and others (324). Terms such as respite care, congregate meals, case management, and telephone reassurance are new to many families. Interestingly, OTAs contractors in Cuyahoga County found that even some caregivers who had used case management did not recognize the term (186). The terms used for some services reflect the requirements of their funding source, and not necessarily the needs of patients or the actual services provided. Examples are homemaker and home health aide (299,303). Medicare pays for home health aides in certain circumstances but rarely pays for homemakers; the difference %e complexity of the VAs eligibility and coverage requirements is described inch. 6.
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88 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias between the two is defined in Medicare regulations. Many caregivers who need someone to help them take care of a dementia patient at home are not familiar with the Medicare regulations and do not define their service needs in terms of those regulations. Such caregivers are not likely to understand the difference between a homemaker and a home health aide without a clear explanation, and as illustrated in the case of Mrs. Din chapter 1, some service providers have difficulty explainin g the difference clearly. The biggest difference often is who pays for the service, not what is provided. Information and referral agencies often categorize services according to the terms providers use for the service. If someone calls an information and referral agency for information about a service but uses a different term for it than the provider uses, the person may not be told about a potentially helpful provider. Instead, the person may be told about providers who call their service what the person said he or she wants but may not offer what the person actually needs. Information about services is meaningless to families and others who do not understand what the services are. To make the information meaningful, the service must be described and categorized in terms relevant to patients and caregivers needs. Categorizing services in a way that is relevant to the needs of patients and families, however, is a difficult task for information and referral agencies (183). 7. Proprietary concerns and agency turf issues sometimes deter staff in one agency from giving people information about another agencys services. Although nearly 75 percent of the 24 agency representatives interviewed in Cuyahoga County said their agencies sometimes refer people to other agencies for a service even if their own agency provides it, OTAs contractors concluded that most of the agencies refer people to their own services (186). This practice is to be expected because the staff of a particular agency are most familiar with their own agencys services and because the services of ones own agency are often easiest to arrange. On the other hand, referring a patient to the services of an agency other than ones own may be more appropriate if the other agency is closer to the patients home or offers services that are more appropriate for the patients needs. To say that proprietary concerns deter one agencys staff from giving people information about another agencys services implies that the first agency is aware of the other agencys services, knows they are appropriate for the patient, and still does not refer the patient or family to that agency. That was the implication in some agency representatives complaints about hospitals that provide home care for patients through their own home health care agency until the patients third-party reimbursement runs out and then refer the patients to another home care agency (186). A different problem occurs when one agencys staff members do not give people information about another agencys services because they are not aware of the other agencys services or do not consider those services appropriate for a patients needs. This situation is particularly likely to occur when the two agencies are in different systems. As discussed in chapter 1, most services for people with dementia are provided in one of several broad systems: the medical care system, the aging services system, the mental health system, the social service system, the public health system, and the public assistance system. These systems are delineated by the Federal programs that fund them, the training of people who work in them, and historical divisions among State and local government agencies that administer the services. Although not rigidly differentiated, the systems generally are not integrated with one another. For several reasons, referrals are more likely to occur within a system than from one system to another. One reason is that informal networking between agencies often occurs only within a given system, and service providers in one system may not be aware of services in other systems. Another reason is that service providers in the same system tend to have a common perspective on dementia and the appropriate care for people with dementia. Thus, they may have greater understanding of and confidence in services provided by other agencies and individuals in their system than in services provided by other systems. Consequently, agencies in one system, say the mental health or social service system, may not refer people to services provided by agencies in another system, say the aging services system; and conversely, agencies in the aging services system may not refer people to services
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Chapter 2The Need for Public Education and Information and Referral l 89 provided in the mental health or social service systems. Proprietary concerns and agency turf issues sometimes interfere with the development of an accurate list of available services. A list developed by someone in one system may not include services provided by agencies in other systems. In addition, anecdotal evidence suggests that some agencies do not want an accurate list to be developed because they are afraid they will lose clients to other agencies (611). At the time of the study in Cuyahoga County, proprietary agencies were not included in the resource list of the countywide information and referral agency (185). OTA does not know whether proprietary and nonproprietary agencies constitute separate systems in other areas of the country. Clearly, beneficial services for persons with dementia are provided by both proprietary and nonproprietary agencies, and caregivers and others need to know about services provided by both types of agencies in order to make informed decisions about the patients care. The first steps in overcoming turf problems that interfere with the availability of accurate information about services are to include all providers in the resource list and to foster a sense of joint ownership of the list. As discussed elsewhere in this report, there is a general need for integration of services, service providers, and systems. Implications for an Effective System To Link People With Dementia to Services Given the large number of potential services, service providers, and sources of funding and the complex and changing rules that restrict their availability, it is not surprising that families and others sometimes receive wrong, partial, or no information about services and funding for services for people with dementia. The many agencies and individuals that provide information and referrals for people with dementia compound the potential for error. Although some agency staff members, individual health care and social service professionals, and service providers are undoubtedly more knowledgeable about available services than others, families and others who need help in locating appropriate services have no way to tell the difference. The discussion in this section has turned repeatedly to the importance of an accurate, comprehensive resource list. Without such a list, agency staff, individual health care and social service professionals, service providers, voluntary associations, and others that refer patients and families to services must rely on informal networking and hustle to keep current on available services. These methods are helpful, but they are not sufficient in complex service environments. Most areas of the country have fewer agencies and individual service providers than Cuyahoga County, Ohio, and some communities may have so few that a formal resource list is not necessary. In the course of this assessment, however, OTA has been told by many individuals that there are no services in a given community, but later has been told by other sources that there are some services, either in that community or readily available to its residents from a nearby community. This situation has occurred most often when, for example, the available services are provided by a mental health agency and the individual is familiar with social service or aging network agencies. OTA does not intend to suggest here that sufficient services are available if all systems are considered, but only to point out that even people who are concerned about services for people with dementia and think they know what is available in their community may not be aware of some services. Maintaining an accurate resource list is difficult and requires a continuing commitment of resources. Ideally, one agency in a community should maintain the list and other agencies and individuals should have access to it. To address caregivers concerns about the location of services, lists for other than very small communities should be formatted to allow easy retrieval of information about service providers in a given geographic area. To begin to address some of the turf problems that interfere with the availability of accurate information about services, the list should include all service providers and be readily available for their use. Computers make it easier now than in the past for an agency to compile and update a resource list and to make the updated version of the list available to other agencies and individual service providers. Special computer software, such as that used for the previously described Benefits Outreach and Screening Service created by United Seniors Health Cooperative (799), may be the only effective way to
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90 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias keep track of the large number of funding sources and the complex and changing eligibility and coverage requirements that determine whether benefits are available to an individual. The availability of an accurate and comprehensive resource list would neither change the inherent complexity of the service environment at the community level nor make up for lack of services. It would improve access, however, and, by letting people know what services exist, it would allow for more appropriate use of services. Likewise, the availability of accurate information about funding for services would neither change the inherent complexity and fragmentation of public and private programs that pay for services nor make more funding available. It would increase the likelihood that people receive benefits for which they are eligible, and it would allow families and others to plan realistically for the care of people with dementia. The process of compiling and maintaining an accurate resource list also could aid in efforts to identify gaps in services and funding for services for people with dementia. If a single agency in a community were designated to maintain an accurate resource list, the designated agency would not have to be the source of all referrals or the single access point for services. The desirability of establishing a single access point for services in each community has been debated by many investigators (see, e.g., Callahan, 1981 (104), and Piktialis and Callahan, 1986 (661)). Some service providers fear that if a single agency is designated to maintain the resource list, that agency will control referrals and may discrimin ate against certain providers (61 1). If the single agency were required to make the resource list widely available, however, other agencies, individual health care and social service professionals, voluntary associations, and others could use it themselves to make referrals. The findings from Cuyahoga County, Ohio, and elsewhere suggest that people with dementia are not always identified as such by agencies that provide information and referrals (186,756). In the past decade, the awareness of Alzheimers and other dementias has increased greatly among health care and social service professionals and service providers. Nevertheless, some people who provide information and referrals are not trained or predisposed to identify dementia in their clients. A system to link people with dementia to services must include mechanisms for identifying people with dementia if it is to provide appropriate information to such people or refer them to appropriate services. Lastly, OTAs contractors found that most of the agencies that responded to the survey in Cuyahoga County do not have systematic procedures to followup on referrals to make sure patients receive needed services (186). The lack of followup procedures does not pertain to the availability of accurate information about services, the topic of this section, but it is relevant to a different question: If accurate information about services for people with dementia is available, can patients, families, and others use it to locate and arrange the services they need? That question is touched on in the following section and discussed in detail in chapter 3. OTAs contractors in Cuyahoga County noted a difference between the kind of referral support, including followup, received by people who are considered clients of an agency and the referral support received by people who just get information and referrals over the telephone (186). Patients and families who need assistance to follow through on a referral are more likely to receive it if they are considered clients of the referring agency. In either case, however, without systematic followup procedures, an agency that provides information and referrals is unlikely even to know which of the people it has referred to services actually needed more help to follow through on the referrals. Systematic follow-up procedures are essential to keep such people from falling through the cracks. WHAT IS SPECIAL ABOUT THE INFORMATION AND REFERRAL NEEDS OF PEOPLE WITH DEMENTIA Many aspects of the information and referral process are similar for individuals with dementia and individuals with other conditions, but there are some differences that are relevant to developing an effective system to link people with dementia to services. Several of these differences are identified in the following discussion, which draws on the observations of administrators of State information and referral programs, an analysis of data on callers to the Home Help Line of the Benjamin Rose Institute in Cleveland, and some findings from the caregiver interviews that were part of the study conducted for OTA in Cuyahoga County, Ohio.
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Chapter 2The Need for Public Education and Information and Referral l 91 Comments by Administrators of State Information and Referral Programs Comments to OTA by the administrators of some State information and referral programs suggest that calls made about services for people with dementia often require more time than calls about services for other people. The director of Alzheimers Information Services in Massachusetts, for example, has told OTA that calls received by the States Alzheimers telephone information and referral program usually last much longer than calls received by the States general information and referral program for elderly people (121). He estimates that whereas calls to the States general information and referral program for elderly people usually last only a few minutes, calls to the Alzheimers information and referral program typically last about 20 minutes and sometimes last as long as an hour and a half. An administrator in the Oklahoma Special Unit on Aging that has a telephone information and referral program for elderly people has told OTA that people who call the program for a person with dementia usually want more than information and referrals (544). He says that people calling for a person with dementia are much more likely than people calling for a nondemented elderly person to want to talk. The director of the North Carolina Alzheimers telephone information and referral program also says that people who call that program often want more than information and referrals (290). Her perception is that many callers want help in understanding dementia and defining the patients service needs, as well as information and referrals. An Analysis of Data on Callers to the Benjamin Rose Institutes Telephone Information and Referral Program OTA is not aware of any research that specifically compares the process of information and referral for people with dementia to the process for nondemented people. In the absence of such research, the OTA contractors who performed the study in Cuyahoga County, Ohio, analyzed data that was collected in 1984 and 1985 on people who had called the Benjamin Rose Institutes telephone information and referral Home Help Line in those years (186). The Benjamin Rose Institute is a nonprofit agency in Cleveland, Ohio, that conducts research and provides health care, social services, and residential care for elderly people. OTAs contractors compared data on two groups of people who had called Benjamin Rose Institutes Home Help Line: l l 30 individuals who had called the Home Help Line for an elderly person with a mental impairment (e.g., Alzheimers disease, mental illness, brain damage, forgetfulness, confusion, or senility lO ); and 116 individuals who had called the Home Help Line for an elderly person with a physical heal& condition and no mental impairment (186). OTAs contractors found several differences between the two groups of callers that point to special aspects of the information and referral process for people with dementia (186). First, more than onethird (36 percent) of the physically impaired people called the Home Help Line themselves, but none of the mentally impaired people did. This finding illustrates the limited capacity of people with a mental impairments to contact an information and referral source for themselves and supports the conclusion of this OTA assessment that an information and referral program is not itself sufficient to link people with dementia to services; as discussed in chapter 3, people with dementia who have no family member or other informal caregiver to help them may require outreach and case management. ll People who had called the Home Help Line for a mentally impaired person were more likely than people who had called for a physically impaired person to have previously contacted another agency that could not provide the needed assistance. The two groups of callers also differed in their reasons for calling the Home Help Line. People who had called for a mentally impaired person were more likely than people who had called for a physically impaired person to say: that they needed help in deciding what types of services would be most helpful; that they needed to know what services Medicare and Medicaid cover; and l~e de~tion of men~ imp~ent fi tie Benj~ Rose Institutes data set included mental illness well x dementi% SO the find@ do not pertain only to people with dementia. llFor o~>s analy.sis in SUppOrt of this conclusion, .%% Ch. 3. 89-1.50 90 4
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92 Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias that they needed help in knowing what tasks they could expect someone they hired to do (186). Another difference between the two groups was in the percentage of people in each group who made it through various steps in the process of getting services. OTAs contractors identified five steps in that process: 1. contacting an information source to obtain a referral; 2. receiving the name of a service provider; 3. contacting the provider; 4. finding that the provider actually offers the needed service; and 5. using the service (186). When OTAs contractors compared people who had called the Home Help Line for a mentally impaired person and people who had called for a physically impaired person in relation to these steps, they found two differences (186). First, the percentage of people who received a referral was smaller for people who had called for a mentally impaired person (79 percent) than for people who had called for a physically impaired person (86 percent). Second, the percentage of people who ended up using the service to which they were referred was smaller among the mentally impaired people (11 percent) than among the physically impaired people (19 percent). OTAs contractors also found that the people who had called the Home Help Line for a mentally impaired person were more likely than people who had called for a physically impaired person to say that they were having difficulty providing care (e.g., were not able to continue giving the same amount of assistance they had been giving or did not have enough time or energy to provide the care needed) (186). Research indicates that the caregivers of cognitively impaired people are generally more stressed than caregivers of physically impaired people (161,296,415,612). The finding that people who called the Home Help Line for a mentally impaired person were more likely to have problems providing care suggests that providers of information and referral for people with dementia must be especially attentive to the needs of caregivers. Findings From Interviews With Caregivers in Cuyahoga County, Ohio As noted earlier, the OTA-commissioned study in Cuyahoga County, Ohio, included interviews with 26 caregivers who called the Cleveland Alzheimers Association Chapters telephone helpline between April and July 1988 (186). Many of the 26 caregivers said they had been unsure at the time they called the helpline about what service they needed, and half of them said they had called the helpline for assistance in deciding what types of services would be most helpful. Six caregivers (23 percent) said they had called to find out what services Medicare or Medicaid cover. Several caregivers said they had called the Alzheimers helpline just to talk, and many seemed to be reaching out for emotional support and reassurance. Eleven (42 percent) of the 26 caregivers had previously contacted other agencies, including information and referral agencies, diagnostic centers, social service agencies, hospitals, and nursing homes. One spouse who was looking for day care said, I was not able to find anything out. A daughter said she had called hospitals and other agencies and that her call to the helpline was motivated by complete frustration. Another daughter said, I called numbers from the telephone bookit was a waste of time. Although not all of the 26 caregivers had called the Alzheimers helpline for a referral, 23 caregivers received the name of one or more service providers (186). Of these 23 caregivers, almost half (11 caregivers) did not subsequently contact the service provider(s) recommended. The caregivers who did not contact the recommended service provider(s) gave a variety of reasons. Two of them cited the anticipated cost of the service; a third decided she did not need the service yet; and a fourth said she did not contact the recommended provider because the phones at the agencies were not answered or the line was busy. In one case, a granddaughter had received referrals for day care and nursing homes for her grandmother, but her parents were not willing to act on the recommendations she received. In another case, a son caring for his 83-year-old mother felt that the referral he received did not go far enough: I was told to find a doctor on my own and was sent a list of hospitals. I didnt contact any of them because no one recommended a specific doctor.
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Chapter 2The Need for Public Education and Information and Referral l 93 Of the 12 caregivers who did contact the recommended service provider(s), 9 caregivers reported that the provider(s) actually offered the needed service, and all 9 used the service (186). The other three caregivers who contacted the recommended service provider found that the provider did not have the service they needed. Two of the three said the hours that services were offered by the provider did not meet their needs. The third caregiver who was caring for her mother who had both dementia and cancer felt that no agency she contacted provided the kind of care her mother needed. The percentage of caregivers who advanced through the five steps in the process of getting services and actually used the service(s) to which they were referred was larger among the caregivers who got a referral from the Cleveland Alzheimers Association Chapters helpline (35 percent) than among people who contacted the Benjamin Rose Institutes Home Help Line (11 percent) (186). Although the reasons for this difference are unclear, it maybe attributable to one or more of the following factors: 1) as a helpline operated by a dementiaspecific organization, the helpline operated by the Cleveland Alzheimers Association Chapter may attract callers with more clearly defined needs than the Home Help Line of the Benjamin Rose Institute; 2) caregivers who contact the Alzheimers Association helpline may be in more immediate need of services than caregivers who call the Benjamin Rose Institute; 3) the person who staffs the Alzheimers Association helpline may provide comparatively more support to callers, thus encouraging them to follow through on referrals; 4) the service providers to which Alzheimers Association helpline callers are referred may be more appropriate for the needs of people with dementia; or 5) the callers to the Alzheimers Associations helpline may regard the helpline as a source of expertise about the special needs of a person with dementia, thus adding to the credibility of the referral. Implications for an Effective System To Link People With Dementia to Services The preceding discussion of special aspects of the information and referral process for people with dementia suggests that the information and referral component of a system to link people with dementia to services must meet certain requirements in order to function effectively. In particular, the staff of the information and referral program must be able to spend enough time to understand the individual caregiving situation and to help the caregiver define the patients care needs and determine what types of services would be helpful. In addition, the staff must be: l l l l knowledgeable about dementia and the care needs of people with dementia; knowledgeable about services for people with dementia; able to provide accurate information about eligibility and coverage for services that may be needed for people with dementia through Medicare, Medicaid, and other funding sources; and attuned to the stresses associated with caring for a person with dementia and the difficulties dementia caregivers may have already encountered in trying to obtain accurate information about services and funding for services. These requirements define what it would mean for an information and referral program to be dementiacapable. Some people believe that only a dementiaspecific information and referral program, i.e., a program that serves only people with dementia and their caregivers, could meet the requirements. Most of the members of the advisory panel for this OTA assessment concluded that an information and referral program that serves other elderly and disabled people as well as people with dementia could meet the requirements, but only with explicit recognition of the special information and referral needs of people with dementia, a commitment to serve such people, and special training for the staff. WHAT IS SPECIAL ABOUT THE INFORMATION AND REFERRAL NEEDS OF ETHNIC MINORITY PEOPLE WITH DEMENTIA Ethnic minority people with dementia and their families face all the same problems in obtaining accurate information about services and about funding for services as other people, but they also face additional problems due to language and cultural differences and demographic factors. At the start of this assessment, OTA could not find any research on information needs or information and referral procedures for ethnic minority people with dementia. Several studies of ethnic minority people in general have found that lack of information interferes with
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94 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias their use of services (see, e.g., Guttman, 1980 (284); and Holmes, et al., 1979 (329)). On the other hand, a telephone survey of 1,608 black, Puerto Rican, Mexican-American, and other white people found little difference among three of these groups (blacks, Mexican-Americans, and other whites) in their knowledge about services and funding for services (330). Only the Puerto Rican group was significantly less likely to know about services and funding for services. In 1988, to determine how ethnic minority people with dementia are linked to services and to identify any special problems that may arise in the linking process for them, OTA commissioned an exploratory study in California (866). That study is described in the next section and its implications for an effective system to link ethnic minority people with dementia to services are discussed. Findings From a Study of Four Ethnic Minority Groups in Two California Counties The OTA-commissioned study of how ethnic minority people with dementia are linked to services was conducted in two counties in California (Los Angeles and San Diego Counties) (866). OTAs contractors conducted interviews with families and other informal caregivers of black, Hispanic, Japanese, and American Indian people with dementia and with staff members of agencies that provide services for people in the four ethnic groups. After they compiled the results of the interviews, the contractors and OTA staff met with some of the interviewers and service providers from three of the four groups-blacks, Hispanics, and Japanes--in order to discuss the findings and their policy implications. Unfortunately, they were unable to arrange a meeting with the American Indian service providers in the time available for the the study. Several limitations of the study in California should be noted. First, the study sample does not represent all ethnic minority groups. OTAs contractors had hoped to include Chinese and Korean caregivers to broaden the Asian-American sample, but the necessary interviews could not be arranged. Many other groups also could have been included, since there are more than 100 ethnic groups in the United States (491,792). Second, even for the groups that were studied, the sample is not representative. People with dementia who have no informal caregiver were not included in the study, for example. Lastly, the sample is composed largely of patients and caregivers who were successfully linked to services. Patients and caregivers who are not receiving services are underrepresented (866). Thus, the findings of the study in California depict a best case scenario with respect to linking ethnic minority people with dementia to services. The study did identify many problems, though, and it provides useful insights into the information needs of ethnic minority people with dementia and their caregivers. To OTAs knowledge, it is the only source of data on this topic. OTAs contractors interviewed 88 ethnic minority caregivers, including 35 blacks, 25 Hispanics, 18 Japanese, and 10 American Indians (866). The study questionnaires were translated into Spanish and Japanese, and the interviewers for the Hispanic and Japanese caregivers were bilingual. Even though most of those caregivers were bilingual, they generally preferred to be interviewed in their native language. The black and American Indian caregivers were interviewed in English. As shown in table 2-4, when asked if they knew about specific services, the majority of the ethnic minority caregivers said they knew about the following services: diagnosis and other physicians services, transportation, home health care, homedelivered meals, nursing homes, chore services, information and referral, financial counseling, and mental health services (866). Less than half of the caregivers said they knew about adult day care, paid companion, protective services, and legal services. The results of in-depth interviews with the caregivers indicate that these responses reflect service consciousness (i.e., general awareness of services) rather than service knowledge (i.e., knowledge of a specific provider in the community) (865). OTAs contractors found considerable variation among the four ethnic groups with respect to the percentage of caregivers who said they knew about each service (866). Some of the variation may have been due to differences in the types of services provided by the agencies from which the individuals were receiving services. Quite possibly caregivers know more about services of agencies to which they are connected than about services of other agencies. Moreover, some services are more readily available to some groups than to others.
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Chapter 2The Need for Public Education and Information and Referral l 95 Table 2-4-The Percentage of Ethnic Minority Caregivers Who Said They Know About Certain Services, Los Angeles and San Diego Counties, California, 1988 Total sample Blacks Hispanics Japanese American Indian Service (N= 88) (N= 35) (N= 25) (N= 18) (N= 10) Physicians services . . . . . . 85%. 74% 100% 89% 89% Diagnosis . . . . . . . . 64 71 96 33 56 Transportation . . . . . . . 80 66 100 72 90 Home health care . . . . . . 77 66 88 78 90 Home-delivered meals . . . . . 77 63 92 78 90 Nursing home . . . . . . . 68 77 100 95 90 Chore services . . . . . . . 67 77 84 50 20 Financial counseling . . . . . . 63 43 80 77 78 Information & referral . . . . . . 60 45 64 61 56 Mental health services . . . . . 55 34 76 61 60 Adult day services . . . . . . 41 26 44 56 60 Paid companion . . . . . . . 39 20 68 39 33 Protective services . . . . . . 38 34 56 28 22 Legal services . . . . . . . 36 17 52 44 56 SOURCE: R. Vane, L. Birba, J. Yelder, et al., Linking of Ethnic Minority Elderly With Dementia to Long-Term Care Servicce, contract report prepared for the Office of Technology Assessment, U.S. Congress, Washington DC, 1989. Many of the ethnic minority caregivers interviewed by OTAs contractors said they needed each of the services mentioned (866). The caregivers were asked in this context how they would find out about and arrange a service they needed. Surprisingly, in this sample of caregivers, most of whom were connected to agencies already, only 17 of the 88 caregivers (19 percent) said they would contact an agency for assistance in locating and arranging the service. Most of the other caregivers said they would try to find out about and arrange the service themselves or ask a family member for help in locating and arranging the service. Some caregivers did not answer the question, thus suggesting that they did not know how they would find out about or arrange the services they needed. The interviewers concluded that although most of the 88 ethnic minority caregivers were linked to an agency already, they had no concept of a process by which they might obtain help in locating and arranging services (866). Even caregivers who reported knowing about information and referral programs (60 percent of the sample) said they would turn internally to themselves or their families for help in locating and arranging services. The interviewers came away with the impression that these apparently connected caregivers were still quite isolated from formal sources of help. OTAs contractors interviewed 48 individuals who provide services for the 4 ethnic minority groups in the two California counties: 19 black service providers, 8 Hispanic service providers, 7 Japanese service providers, 7 American Indian providers; and 7 other white service providers (866). Sixty-six percent of the 48 service providers had worked for at least 3 years with ethnic minority people with dementia. The service providers interviewed by OTAs contractors said that many ethnic minority caregivers in their areas have very little knowledge about dementia (866). The service providers also said that with some exceptions, knowledge about dementia is quite limited among the staff of agencies that serve ethnic minority people in the areas studied. Among the 48 service providers who were interviewed by OTAs contractors, 55 percent rated their own knowledge about dementia as moderate, while 40 percent rated their knowledge as high and 6 percent rated their knowledge as low. The service providers who were interviewed said that dementia frequently is not identified in ethnic minority people for a variety of reasons: l l l because families regard patients cognitive deficits and behavioral problems, if any, as part of normal aging; because families feel there is a stigma attached to some symptoms of dementia and hide the patients; and/or because health care and social service professionals and service providers who interact with patients are not trained to identify dementia (866).
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96 l confused With, Burdened Families: Finding Help for People With Alzheimers & Other Dementias On the other hand, most of the ethnic minority caregivers interviewed for the study said the person they were caring for had been formally evaluated and diagnosed as having dementia (866). This included 40 percent of the American Indian patients, 60 percent of the black patients, 56 percent of the Japanese patients, and 84 percent of the Hispanic patients. The service providers considered these percentages unusually high for the communities. The overall impression of the interviewers and OTAs contractors was that the problem of dementia is only one of many problems facing service providers in ethnic minority communities. Available resources are stretched thin, and agencies are overwhelmed by many urgent needs. Understandably, many service providers regard dementia as just one more problem to handle with limited funds and staff capability. In fact, some service providers seemed to regard the available resources for the care of people with dementia as so limited that there was no practical reason for identifying dementia in their frail elderly clients. Implications for an Effective System To Link Ethnic Minority People With Dementia to Services The interviews with ethnic minority caregivers and service providers in the OTA-commissioned study in California (866) and the interviewers comments in meetings with OTA staff suggest four areas of consensus about special information needs and information and referral procedures for ethnic minority persons with dementia and their caregivers. Those four points are discussed below. 1. Information about dementia and about services for people with dementia should be available in the native language of patients and caregivers. As noted earlier, the Hispanic and Japanese caregivers interviewed in the California study were bilingual but they generally preferred to be interviewed in their native language. Many of the people they were caring for spoke Spanish or Japanese exclusively. It was the consensus of the interviewers, service providers, and OTAs contractors that these patients and caregivers and others like them would have much greater difficulty understanding information about services and about funding for services or would be completely unable to understand the information if it were in English rather than in Spanish or Japanese. An example of the differential impact of information presented in English v. the caregivers native language occurred in the fall of 1988, at the Little Tokyo Service Center, an agency in Los Angeles that provides services for Japanese people of all ages. Concerned about Japanese caregivers lack of knowledge about dementia, a social worker at the Little Tokyo Center arranged two informational meetings for caregivers, a week apart, one to be conducted in English and one in Japanese. For both meetings, the main speaker was a Japanese neurologist who is well known in the community. Whereas 10 people attended the meeting conducted in English, 60 attended the meeting conducted in Japanese. During the latter meeting, several caregivers expressed strong interest in setting up a support group for caregivers. The same interest was not expressed in the other meeting (739). One Hispanic interviewer told OTA about caregivers she interviewed who had gone to a local government agency to apply for public assistance and medical assistance and did not understand why they had been turned down. The interviewers opinion was that even though the caregivers spoke and understood some English, they did not do so well enough to understand the complex eligibility requirements for these publicly funded programs. Her impression was that the families were very poor and probably eligible for assistance, so she suggested that they appeal. They did not do so, she said, because they did not think they could speak English well enough to present their case effectively to the agency staff (262). The Los Angeles County Department of Social Services has an Asian unit with case workers who speak Japanese, Chinese, Korean, and Vietnamese to process applications for public assistance and medical assistance (739). OTA does not know whether there is a similar unit with Spanishspeaking case workers, but the department does have Spanish-speaking case workers in some offices (865). While visiting agencies for the study in California, OTAs contractors noted a lack of printed materials in languages other than English about Alzheimers disease, dementia, and services for people with dementia-a lack which contrasted with an extensive array of non-English-language printed
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Chapter 2The Need for Public Education and Information and Referral l 97 materials on other health and mental health problems. In the opinion of OTAs contractors, the lack of non-English-language printed information about dementia is one of the biggest problems preventing access of ethnic minority people with dementia to appropriate services (866). The Alzheimers Association has recently translated some of its brochures into Spanish and is distributing them. The social worker at the Little Tokyo Service Center, frustrated by the lack of any information about Alzheimers disease in Japanese, translated an Alzheimers Association pamphlet herself in the fall of 1988 (739). Translating these materials into many different languages and promptly distributing the products would appear to be both an achievable objective and a minimum requirement for linking ethnic minority people with dementia and their caregivers to services. It is not known how many ethnic minority people with dementia or their caregivers need information in a language other than English. Elderly people are more likely than younger people to use their native language (862). Since most patients and many caregivers are elderly, the need for information in other languages may be widespread. In fact, Census Bureau data indicate that among elderly people who speak Japanese at home, 53 percent do not speak English well or do not speak it at all. Likewise, among elderly people who speak Spanish at home, 61 percent do not speak English well or do not speak it at all (863). 2. Information about dementia and about services for people with dementia must be culturally appropriate. The cultural heritage, traditions, customs, and beliefs of an ethnic group affect how and when members of the group perceive the problem of dementia, who is expected to be the caregiver, what that persons responsibilities are, whether formal services are acceptable, and how and when they are sought (160,315,864). All these factors are relevant to the information needs of ethnic minority people with dementia and their caregivers. In particular, these factors influence what information about dementia, services, and service providers is meaningful and appropriate for them. It has been suggested, for example, that memory loss and other cognitive deficits associated with dementia are noticed sooner by and are more troublesome to groups that place high value on cognitive and intellectual functions than to groups that place high value on affective or emotional functions. The latter groups are more likely to be troubled by personality changes associated with dementia or by the failure of the demented person to fulfill his or her accustomed role in the family (237). If information about dementia is to be meaningful to ethnic minority people, it must focus on the aspects of the problem that are troublesome to them. The text of pamphlets and other informational materials should reflect these differences (863). Cultural factors also are relevant in selecting appropriate service providers for ethnic minority people with dementia. Many of the ethnic minority caregivers interviewed for the study in California were using services from agencies that primarily serve one ethnic minority group (866). Staff of these agencies often are members of the same ethnic group, and the services are adapted in various ways to that groups customs and values. The ethnic minority service providers who were interviewed in California emphasized the importance of the cultural appropriateness of services (866). Sixty-six percent of the 48 service providers interviewed said that in their experience, an agencys failure to respond to cultural values and concerns was a common barrier to the use of the agencys services by ethnic minority people. In order to refer patients and families to appropriate service providers, an information and referral agent must be aware of their cultural background and knowledgeable about agencies and individual providers capacity to serve people of different cultural backgrounds. 3. Information about dementia and about services for people with dementia must be tailored to demographic differences among and within ethnic minority groups. Demographic factors, such as income and educational background, vary both among and within ethnic minority groups. Although the four ethnic minority groups studied by OTA have lower average incomes than the majority population, not all ethnic minority people have low incomes. The same is true for educational background. Whereas cultural factors are specific to a particular ethnic group, demographic factors cut across ethnic groups (866). The combination of language and cultural differences among ethnic groups and demographic differ-
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98 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias ences among and within ethnic groups creates a complicated mix of information needs. Ethnic minority people in groups that have relatively low incomes are likely to be eligible for means-tested services and benefits (492,455). Accurate information about these services and benefits is clearly important for them. On the other hand, information and referral agents cannot assume that individual ethnic minority people have low incomes or that they have a special need for information about means-tested programs. The educational background of patients and families is relevant to the content, pitch, and format of printed information about dementia and services for people with dementia (866). Public education messages for radio, television, and other nonprint media also must take into account the formal educational background of the intended audience. OTAs contractors found that educational background varied greatly both among and within the four groups of ethnic minority caregivers interviewed in San Diego and Los Angeles Counties. To create informational materials that reflect the mix of language, cultural, and demographic differences among ethnic minority people requires extensive knowledge of the intended audience. One Hispanic service provider in Los Angeles has created a Spanish-language foto novela (picture book) about Alzheimers disease and dementia. The picture book format and the pitch of the text are intended for a segment of the Spanish-speaking population that is not reached by Alzheimers Association pamphlets that have been translated into Spanish. The content of the book, a page of which is shown in figure 2-2, reflects values, customs, and experiences that are common to MexicanAmericans. According to the author, different text and illustrations would be needed for Spanishspeaking Cuban-Americans (146) 4. Information about dementia and services for people with dementia must be available through the existing ethnic minority community infrastructure and ethnic minority agencies, where there are such agencies. For cultural, demographic, and historical reasons, many ethnic minority people live in communities largely composed of members of the same group. In these communities, there is generally an infrastructure of individuals and associations that are recognized by the community as sources of information and assistance with a wide range of problems (380,867). Some communities also have agencies that primarily serve one ethnic group in that community. If information about dementia and about services for people with dementia is to reach patients and their caregivers in these communities, it must be available through these individuals, associations, and agencies. It may not be obvious to outsiders which individuals and associations are recognized by an ethnic minority community as sources of information and assistance. The individuals occupations and the associations stated objectives may have no apparent connection with care of people with dementia. Yet information distributed through other, seemingly more appropriate channels, is less likely to reach those that need it or to be accepted by them (862). The importance of the church as a source of support and assistance in black communities is widely recognized (642,770,782), and some commentators have suggested that churches in those communities could provide information about services or refer people with dementia and their caregivers to other sources of information (750). Service providers in Los Angeles County told OTAs contractors that pastors of some black churches are enthusiastic about learning about dementia and making information available to their members. On the other hand, some caregivers cannot leave the person with dementia alone and therefore cannot be involved in church activities (160). Other black caregivers are not connected to a church, and alternate ways of reaching these caregivers also are needed. Although churches in black communities may play a role in providing information or referring people to sources of information about dementia and services for people with dementia, churches in some ethnic minority communities are unlikely to play such a role. A study of elderly Vietnamese immigrants in two Texas communities found, for example, that 90 percent of the respondents said their church or temple was important to them, but none said they would turn to it for help with a problem (165). They regarded the church or temple as a spiritual and cultural institution and said they would turn to public agencies for information and assistance.
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Chapter 2The Need for Public Education and Information and Referral l 99 (% a c .~ a
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100 Confided Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias Clearly, not all ethnic minority people live in communities largely composed of one ethnic group. Making information about dementia and about services for people with dementia available to geographically dispersed ethnic minority people undoubtedly is more difficult than making it available in self-contained minority communities. The study conducted for OTA in Los Angeles and San Diego Counties did not address this problem, and OTA has not looked into methods that have been used successfully to provide information about other health problems for geographically dispersed ethnic minority people. PHYSICIANS ROLE IN REFERRING PATIENTS AND CAREGIVERS TO SERVICES As discussed in the beginning of this chapter, many families and other informal caregivers say that physicians are not knowledgeable about services for people with dementia and do not refer patients and their caregivers to services (125,257,412,497,500, 531,599,934). For example, three-quarters of the 100 family caregivers interviewed for the Connecticut Governors Task Force on Alzheimers Disease in 1988 said that at the time of diagnosis, the patients physician did not refer them to any services (479). Although other health care and social service professionals also may not be knowledgeable about services for people with dementia and may not provide appropriate referrals, the focus of caregivers complaints has been on physicians probably because of caregivers expectations for physicians. A physician is usually the one who tells the caregivers the patients diagnosis, and since physicians often refer all kinds of patients for other medical services at the time of diagnosis, caregivers may expect the physician to refer them to services. Similarly, throughout the course of a patients illness, caregivers are likely to turn to the physician when there are changes in the patients condition and problems they cannot handle (292). They hope and often expect that the physician will be able to provide solutions, including referrals to appropriate services. If that does not happen, the physician may get blamed. Other health care and social service professionals who might provide referrals seem to get blamed less oftenprobably because patients, families, and others do not have the same expectations for them. Physicians are in a difficult position with respect to providing information and referrals for their patients with dementia. The literature identifies many other tasks for physicians who are treating people with dementia, even without considering the task of providing information and referrals. The identified tasks include making a diagnosis; treating any intercurrent illness; managing the patients medications; offering emotional support for families and other informal caregivers; and providing education and counseling for caregivers about the patients diagnosis and prognosis and caregiving techniques to reduce patients behavioral problems and maintain patient functioning (74,154,292,300, 368,679,915). As discussed earlier in this chapter, helping caregivers of people with dementia identify their service needs and select a service provider is often time-consumin g. In addition, in many communities, there is no source of accurate, comprehensive information about what services are available, and the service environment is so complex that it is difficult and time-consumin g for anyone to keep current on available services. Given existing constraints on physicians time, it may be unrealistic to expect physicians to provide information about services and referrals to services for their patients with dementia. On the other hand, many caregivers expect physicians to provide information and referrals. Moreover, given the general feeling of respect for physicians, caregivers are probably more likely to use services if they have been referred to the services by a physician than by someone else. As discussed in chapter 3, some caregivers of people with dementia feel guilty about using services and believe that they should provide all the patients care themselves. This feeling is compounded for some caregivers by doubts about whether the patient is really sick and, therefore, whether the use of services is justifiable. In the eyes of these caregivers, a physicians referral may give legitimacy to their use of services (290,931). Discussions about physicians role in providing referrals for dementia patients and their caregivers generally do not distinguish between a physician furnishing information about community services and referrals to specific providers and a physician referring patients and their caregivers to another
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Chapter 2The Need for Public Education and Information and Referral 101 source of information and referrals. Some commentators suggest that physicians should act as the coordinator or manager of services for people with dementia. Winograd and Jarvik say, for example: In addition to providing medical care and psychologic support, the physician can play a pivotal role in developing comprehensive plans for demented patients with the aid of other health professionals (e.g., discharge planners and visiting nurses). Social workers can assist with referral to the appropriate resources. (915). This statement implies that the discharge planner, visiting nurse, and social worker should be the sources of information about specific service providers. Many commentators recommend a multidisciplinary team approach to care of people with dementia (56,257,292,679,915). In that approach, a physician may discuss potentially beneficial services with caregivers and recommend their use, but the task of identifying service providers usually is performed by a social worker, nurse, or another team member. Most physicians do not practice as part of a multidisciplinary team, however. If their patients and the patients caregivers are to receive information about services and referrals to service providers, the physician must either furnish them or refer the caregivers to another source of information and referrals. Some and perhaps many physicians may prefer not to be the primary source of information and referrals for their patients with dementia. A study of physicians roles in treating people with dementia asked 57 physicians to rate the relative difficulty of various tasks involved in caring for these patients (257). The studys findings show that the physicians considered helping patients and their families obtain health care and social services and advising them about nursing home placement among the most difficult and time-consumin g tasks in treating these patients. The 47 family caregivers interviewed as part of the study said that physicians were least helpful in these areas. The researchers concluded from the physicians spontaneous comments during the interviews that some of the physicians made a distinction between coordinating medical services and social services and did not regard referrals for social services as their responsibility. It is often said that physicians know less about and refer patients less frequently to social services than to medical services (125,133,257,927). It is also said that some physicians are not knowledgeable about home care services and sometimes recommend nursing home placement when the patient could be cared for at home with available services (500,934). The same observations have been made with respect to physicians knowledge of and referrals to services for elderly people in general, and the findings of some studies support these observations (661,927). Some AAAs have attempted to increase physicians awareness of services and encourage physicians to refer elderly people and people with dementia to an AAA for information and assistance with arranging services (934,944). Sometimes these efforts are initially successful. Referrals by physicians to the AAA increase for a time but then drop off. It is not clear why this occurs. Some physicians may not be convinced of the value of certain services for their patients, or their referrals to the AAA may not work in some way that leads them to stop referring. The distinction between service consciousness and service knowledge that was made earlier in this chapter with respect to caregivers knowledge about services may be helpful in thinking about physicians knowledge about services and their role in providing information and referrals for people with dementia. If physicians have service consciousness (i.e., they are aware of the types of services that may be useful for people with dementia) but lack service knowledge (i.e., they do not know what specific agencies or individuals provide the services in the community), they still can talk with caregivers about potentially beneficial services and encourage the caregivers to use appropriate services. Then they will have to refer the patients and caregivers to someone who is knowledgeable about the details of service availability in the community. If, on the other hand, physicians lack service consciousness (i.e., they are not aware of the types of services that may be useful for people with dementia), they will not be able to refer or advise caregivers appropriately. They may recommend too often the services they know about and fail to recommend others that may be more appropriate for the patients and familys needs. Anecdotal evidence suggests that some physicians lack service knowledge; others lack both service consciousness and service knowledge; and still others are well-informed about services that
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102 l Confused Minds, Burdened Families: Findinng Help for People With Alzheimers & Other Dementias may be useful for people with dementia and about the availability of those services in the community. Physicians play a pivotal role in linking people with dementia to services, and ways must be found to ensure their effectiveness in that role. It may be unrealistic to expect physicians to stay up-to-date on available services and funding for services in other than very small communities, and it probably would be undesirable from a societal perspective for physicians to spend their time in that way. A more appropriate objective may be for physicians to be aware of the kinds of services that maybe beneficial for people with dementia, to discuss services in a general way with patients and their caregivers, and then to refer the patients and caregivers to another individual or agency that can provide information about specific service providers and funding for services. Obviously, for this approach to work, a source of accurate information about services and service providers must exist in the community. CONCLUSION In many communities, accurate information about services for people with dementia and about funding for such services is not available. Other problems usually receive more attention from policymakers and dementia advocates, but when dementia caregivers are asked, they stress the difficulties they face in trying to obtain information about services and funding. In the view of many caregivers and service providers interviewed for this OTA assessment, caregivers lack of knowledge about services is the primary barrier to service use. Knowledge about services has two components, referred to here as service consciousness and service knowledge. The study conducted for OTA in Cuyahoga County, Ohio, found that a sigificant proportion of caregivers of people with dementia, 12 to 92 percent depending on the service in question, lacked service consciousnessi. e., they had never heard of the service. Again depending on the service, 35 to 96 percent of caregivers lacked service knowledge Photo credit: Alzheimers Association and Rush-Presbyterian/St. Lukes Medical Center Physicians play a pivotal role in linking people with dementia to services. Ways must be found to ensure their effectiveness in that role.
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Chapter 2-The Need for Public Education and Information and Referral l 103 i.e., having been told what the service is, they could not identify a specific provider in the community (186). A caregivers need for service knowledge probably is greatest at the time(s) when he or she is selecting a specific provider. A caregivers need for service consciousness, however, is longer lasting and more general. An awareness of different types of services can help a caregiver think realistically about a demented persons care, consider various alternatives, and plan for the future-all of which may increase the caregivers sense of being in control of the caregiving situation. Lack of service consciousness is probably addressed most effectively through public education programs. Lack of service knowledge is addressed most effectively through information and referral programs. Neither approach is sufficient by itself because people who lack service consciousness are unlikely to call an information and referral source. Conversely, the kind of information that can be provided through public education programs often is not detailed enough to allow people to locate the services they need or to determine whether they are eligible for various funding programs. To link people with dementia to appropriate services, an information and referral program must have an up-to-date resource list that includes all agencies and individuals in the community that provide the kinds of services that maybe needed for people with dementia. Whether the information and referral program is dementia-specific or not, it must be dementia-capable. The programs staff must be knowledgeable about dementia, the care needs of people with dementia, and the common problems families and others face in taking care of a person with dementia. The program must be able to provide accurate information about eligibility and coverage for services through Medicare, Medicaid, and other funding sources. If the program is not dementiaspecific, it must have mechanisms for identifying people with dementia so that it can provide appropriate information and referrals. Lastly, it must be responsive to the special information and referral needs of ethnic minority people with dementia. Even if accurate information about services and funding for services were available, however, it would not mean that there would be enough services or funding. Insufficient availability of services and funding for services is a major public policy concern that cannot be remedied by an accurate resource list or by the best public education and information and referral programs. On the other hand, without an accurate resource list, no one can know with certainty what is and is not available, except in small communities with very few service providers. In public policy discussions, a single-minded focus on the problem of insufficient availability of services and funding for services for people with dementia precludes awareness of other problems that restrict access to the services and sources of funding that are available. Obviously, one of these problems is the lack of accurate information about services and funding for services. Underlying that problem is the incredible complexity of services and funding at the community level. An accurate resource list and public education and information and referral programs can help caregivers and others locate services and sources of funding but cannot change the inherent complexity of the service environment. If the complexity of the service environment were reduced, obtaining accurate information about services and funding would certainly be less difficult.
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Chapter 3 The Need for Outreach and Case Management
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CONTENTS Page INTRODUCTION . . . . . . . . . . . . . . . 107 THE LIMITED USE OF SERVICES . . . . . . . . . . . 108 PERSONAL FACTORS THAT MAY INTERFERE WITH INDIVIDUALS ABILITY OR WILLINGNESS TO USE SERVICES . . . . . . 110 Personal Factors Related to Individuals With Dementia . . . . . . 111 Personal Factors Related to Informal Caregivers . . . . . . . . 113 Implications for an Effective System To Link People With Dementia to Services 119 WHAT IS SPECIAL ABOUT CASE MANAGEMENT FOR PEOPLE WITH DEMENTIA? . . . . . . . . . . . 122 Findings From an Exploratory Study of Case Management for People With Dementia . . . . . . . . . . . . . 123 Implications for an Effective System To Link People With Dementia to Services 127 UNRESOLVED QUESTIONS ABOUT CASE MANAGEMENT IN A SYSTEM TO LINK PEOPLE WITH DEMENTIA TO SERVICES . . . . . 129 To What Extent ShouId a Linking System Try To Maintain at Home Individuals With Dementia Who Live Alone and Have No Informal Caregiver? . . . 129 Should Counseling Be Part of Case Management in a Linking System? . . 130 In General, Should Families Be Regarded as Co-Case Managers or Co-Clients by a Linking System? . . . . . . . . . 131 How Many People With Dementia Need Case Management? . . . . . 131 How Much Would Case Management Increase the Use of Services? . . . 134 CONCLUSION . . . . . . . . . . . . . . . . 135 Box Page 3-A. Findings From the Duke University Respite Care Demonstration Project Regarding Family Caregivers Reluctance To Use Services . . . . . 118 Tables Page 3-1. The Five Core Functions of Case Management . . . . . . . 108 3-2. Caregivers Opinions About Peoples Characteristics, Feelings, and Perceptions That Are Barriers to the Use of Services, Cuyahoga County, Ohio, 1988 . 111 3-3. Ranking of Certain Goals of Case Management by Case Managers in Oregon and Washington State . . . . . . . . . . . 122
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Chapter 3 The Need for Outreach and Case Management INTRODUCTION People with dementia and their caregivers cannot be linked to services or sources of funding for services that do not exist, and as noted throughout this report, existing services and finding for services for people with dementia are inadequate (9,831 ).1 Even when services and funding are available, however, some patients and caregivers do not use them. As discussed in chapter 2, one important reason why they do not use services is that they do not know about the services. To increase peoples knowledge about services and sources of funding for services, an effective linking system must include public education and information and referral (see ch. 2). The analysis in this chapter indicates that some people with dementia and some caregivers need assistance that goes beyond public education and information and referral if they are to be linked to appropriate services. The types of individuals who are likely to need such additional assistance include: l l l individuals with dementia who live alone and have no family member or other informal (unpaid) caregiver to help them; individuals with dementia who have an involved family member or other informal caregiver who is aware of services but reluctant to use them even though the services are needed; and individuals with dementia who have an involved family member or other informal caregiver who is aware of services but unable to arrange them. From the analysis in this chapter, OTA concludes that in order to serve these types of individuals effectively, a linking system must include outreach and case management in addition to public education and information and referral. Outreach in this context is defined by OTA as any active method of identifying individuals who need services but are unlikely to respond to a public education program or to contact an information and referral source on their own. Case management in this context is defined as a process that includes the five core functions shown in table 3-1. The first section of this chapter presents the available data on the use of services by people with dementia and their caregivers. The data show that many of these individuals do not use services. Some of them do not use services because the services do not exist or are too costly or because they are not aware of the services. Data from several studies indicate, however, that some people with dementia and their caregivers do not use services even when the services are available and affordable and they know about the services. As discussed in the second section of the chapter, some people with dementia and some caregivers have characteristics, feelings, and perceptions that make them either unable to arrange services themselves or reluctant to ask for or accept services. To a great extent, these patient and caregiver characteristics, feelings, and perceptions explain why outreach and case management are essential components of an effective linking system. Many of the same characteristics, feelings, and perceptions that interfere with the use of services by some people with dementia and by some caregivers also complicate the case management process with these individuals, making it difficult for a case manager to assess their needs and plan, arrange, and monitor services for them. The third section of the chapter discusses what is special about case management for people with dementia and draws implications for the skills and training needs of case managers who work with people with dementia and their caregivers. Many questions about the case management component of a linking system for people with dementia remain to be answered, including whether, in general, families should be regarded by a linking system as co-case managers or co-clients; whether counseling should be part of the case management component of a linking system; and how many people with dementia and their caregivers need or should receive case management. These and other unresolved questions pertainin g to case management for people with dementia are discussed at the end of this chapter. The answers to these questions have implications for the design and operation of the case management component of a Isee tible 1-2 in ch. 1 for a list of the services that may be needed for pmple ~th demmtia. lo7
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108 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias Table 3-l-The Five Core Functions of Case Management 1. Assessing a clients needs 2. Developing a plan of care 3. Arranging and coordinating services 4. Monitoring and evaluating the services that are delivered 5. Reassessing the clients situation as the need arises SOURCE: Office of Technology Assessment, 1990. linking system and for the skills and trainin g needs of case managers employed by the system. This chapter relies heavily on the findings of two OTA contract reports. One OTA contract report describes a respite care demonstration project for families of people with dementia conducted by Duke University and identifies factors that interfered with the timely use of respite services by some families (291). The second OTA contract report describes an exploratory study conducted for OTA in 1988 that examined: 1) what case managers in five Pennsylvania area agencies on aging (AAAs) perceived to be the unique aspects and difficulties of working with people with dementia and their families; and 2) how family caregivers perceived the process by which the AAA case managers arranged services for them (934). The Duke respite care demonstration project and the study conducted for OTA in Pennsylvania are described later in this chapter as their findings are presented. 2 THE LIMITED USE OF SERVICES Available data from 11 small-scale studies described below indicate that although the majority of people with dementia use physicians services, only a minority of them use in-home and other community services. Several large-scale national studies, such as the 1982 and 1984 National Long-Term Care Surveys, also include information about subjects use of services, but it is difficult to determine with any certainty which subjects in the surveys have dementia (468). Thus, it is not possible to develop valid figures on service use by people with dementia from those studies. For that reason, OTAs conclusions about service use are based on the 11 small-scale studies that focus exclusively on service use by people with dementia. The source of the study sample, the severity of the subjects dementia, and the time period and specific services covered by the 11 studies vary; hence, their findings are not directly comparable. Moreover, the use of some services-mental health services, legal services, benefits counseling, and certain other services needed by some people with dementiawas not considered in any of these studies. Nevertheless, the findings suggest that many noninstitutionalized people with dementia do not use any paid in-home or community services other than physicians services. 1. 2. 3. A 1985 survey of 597 caregivers of noninstitutionalized individuals with dementia in 16 States found that only one-fourth of the caregivers had ever used any paid in-home or community services (117). A 1987 survey of 100 caregivers of noninstitutionalized individuals with dementia in Connecticut found that 14 percent of these individuals were receiving services from community agencies, an additional 12 percent were receiving services from privately hired help, and 3 percent were receiving services from both sources. The results of a companion survey of 531 Connecticut health care and social service agencies suggest that only 13 percent of all noninstitutionalized individuals with moderate or severe dementia in the State were receiving any services from such agencies in 1987 (479). A 1983 study of 501 family caregivers of individuals with dementia in North Carolina found that 43 percent of the caregivers had used a paid helper (usually a maid or sitter) to care for the patient (242,243,291). Fewer than one-fifth of the caregivers had used any other in-home or community services for the individual with dementia: of these, 19 percent had used in-home nursing services, 12 percent had used adult day care, and 13 percent had used homemaker or chore services. Followup interviews with the same caregivers a year later found that only one-fourth of the caregivers had used any paid services other than physicians visits for the person with dementia in the intervening year. The average duration of the demented individuals illness in this study was 5 years (range: 6 months to 30 years), and most services were used in the final year before the patient died or was placed in a nursing home. me two conlract reports are available from the National Technical Information Service in Springfield, VA (see app. A.)
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Chapter 3--The Need for Outreach and Case Management l 109 4. A study of 101 people with dementia seen at an outpatient dementia clinic in Minnesota between 1982 and 1984 found that 48 of them had severe dementia at the time of their initial clinic visit; by the time of the last followup (2 to 4 years after their initial visit), 31 percent of these 48 patients had died; 40 percent had been put in a nursing home; and 29 percent were still living at home 5. 6. 7, (411). Of those who were still at home, 79 percent, or 23 percent of the original sample, were using either adult day care or in-home nursing services. The same study found that 53 of the 101 people seen at the outpatient dementia clinic between 1982 and 1984 had mild dementia at the time of their initial visit; by the time of their last followup (2 to 4 years after their initial visit), about half of these 53 patients had died (9 percent) or been put in a nursing home (41 percent), and half were still living at home. Of those still at home, 32 percent, or 13 percent of the original sample, were using either adult day care or in-home nursing services. A 1986 survey conducted for OTA of 569 family caregivers of people with dementia found that 11 percent of the caregivers were using paid companion or home health aide services at the time of the survey, and 21 percent had used them in the past but were not using them at the time of the survey (926). Eight percent of the caregivers were using visiting nurse services at the time of the survey, and 17 percent had used them in the past. Four percent were using adult day care services, and 6 percent had used them in the past. Three percent were using respite care services, and 5 percent had used them in the past. A study of 117 individuals with dementia who were assessed from March to July 1987 by the Alzheimers Project of Kennebec Valley, Maine, found that 11 percent of these individuals were using respite/adult day care, 11 percent were using homemaker services; 4 percent were using hired help; 4 percent were using a personal care attendant; and 3 percent were using a nurse assistant (223). An analysis of data on 453 individuals with dementia seen at Californias six Alzheimers Disease Diagnostic and Treatment Centers in 1987 found that two-thirds of these patients had used physicians services in the previous 6 months (227). Only 10 percent or fewer of the 8 patients had used home health aide, homemaker/ chore, or adult day services in that period. A study of 213 family caregivers of individuals with dementia in Michigan found that while 63 percent of the patients had used physicians services in the previous 3 months, fewer than one-third had used home health aide services (30 percent), visiting nurse services (18 percent), adult day services (14 percent), housekeeping services (8 percent), or respite care services (7 percent) (774). Moreover, many of the caregivers who had used a service had used it very few times. The researchers compared service use by people with dementia from this study and service use by people with stroke and other diagnoses (e.g., cardiovascular and renal diseases) from other studies and found that although the people with stroke and other diagnoses were only slightly more impaired than the people with dementia in terms of activities of daily living (ADLs) and instrumental activities of daily living (IADLs), the people with stroke and other diagnoses used in-home and community services two to three times more frequently (255). 9. A 1983-84 study that compared the amount of care received by 20 elderly people who had moderate to severe dementia and 20 elderly people who had moderate to severe physical impairments found that, on average, the people with dementia received less than half the amount of paid services received by the people with physical impairments (7.5 hours per week v. 16 hours per week of paid services, respectively) (71). 10. In a 3-year respite care demonstration project conducted by Duke University in North Carolina, families of people with dementia were offered two types of respite care: in-home respite or overnight care of the patient in a nursing home (291). Although the respite care was provided regardless of a familys ability to pay, only a small percentage of the families eligible for the respite services used them. Furthermore, many of the families in this study waited until just prior to the patients death or placement in a nursing home to use respite services: about half of the people with dementia who received respite services died or were placed in a nursing home within 8 months of frost receiving the services, and half of those individuals died or were placed
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110 Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias 11. in a nursing home within 30 days of first receiving the services. 3 In a l-year respite care demonstration project conducted by the Philadelphia Geriatric Center, over 300 families of people with dementia were offered three types of respite care: 1) in-home respite care, 2) adult day care, and 3) overnight nursing home care. About half of these families used the respite services offered-35 percent used in-home respite care, 2 percent used adult day care, 7 percent used overnight nursing home care, and 8 percent used more than one type of respite care. Most of the families who used respite services used very few hours: during the year, only about one-third of the families who used in-home respite care used more than 100 hours of this type of care; families who used adult day care used an average of only 10 days of such care, and families who used overnight nursing home care used an average of only 11 nights of such care (88,448). As noted earlier, these 11 studies are not directly comparable because of differences in the time period and services covered, the source of the study sample, and the severity of the subjects dementia. Nevertheless, the following general conclusions can be drawn from the studies findings: only about one-fourth to one-half of all noninstitutionalized people with dementia use any paid in-home or community services other than physicians services; among those noninstitutionalized people with dementia who do use services, many use very few services or use them infrequently; many noninstitutionalized people with dementia who do use services use them very late in the course of their disease; and on average, noninstitutionalized people with dementia use fewer paid services than noninstitutionalized people with physical impairments. The percentage of people with dementia who use nursing homes in the course of their dementing illness is not known. The 1986 survey of 569 family caregivers conducted for OTA (study #5 above) found that half of the individuals with dementia being cared for had been in a nursing home at some time in the course of their illness, including 36 percent who were in a nursing home at the time of the survey and 15 percent who had been in a nursing home previously but were not at the time of the survey (926). The five other studies cited above that included nursing home residents found that as few as 3 percent to as many as 33 percent of the individuals in their samples were in nursing homes (223,227, 242,479,774). 4 The wide range in these figures reflects differences in the source of the sample and the time frame of the studies and differences in Medicaid regulations, bed supply, and other factors that affect the number of people with dementia in nursing homes in different States. The 1985 National Nursing Home Survey found that 620,000 nursing home residents--47 percent of all elderly nursing home residentshad senile dementia or chronic organic brain syndrome (846). That survey also found that 830,000 nursing home residents-63 percent of all elderly nursing home residentswere so disoriented or memory-impaired that their performance of the activities of daily living, mobility, and other tasks was impaired nearly every day. Using these figures from the National Nursing Home Survey and OTAs estimates of the prevalence of dementia nationwide, 5 one could estimate that from 9 to 33 percent of Americans with dementia are in nursing homes at any one time. The wide range in that estimate reflects uncertainty about the percentage of nursing home residents with dementia (e.g., 47 to 63 percent) and uncertainty about the prevalence of dementia. PERSONAL FACTORS THAT MAY INTERFERE WITH INDIVIDUALS ABILITY OR WILLINGNESS TO USE SERVICES There are many reasons why some people with dementia and some caregivers do not use services. As discussed in chapter 2, researchers performing a study for OTA in Cuyahoga County, Ohio, asked 26 caregivers of people with dementia to give their opinions about why people do not use services (186). 6 The reasons most frequently identified by Ssx box 3.A fo r fier discussion of the Duke University Respite Care Demonstration PmJect. d~e SpWi.tIc estimates by study were 3 percent (223,227,774); 28 percent (242); and 33 p~cent (479). S~ 1987, Om e~~t~ tit 1.5 ~lion Ameficm ~ ~vere dem~~, and 1 to 5 million ~d mild or mod~ate demen~ (831)0 GFor more information on the study conducted for OTA in Cuyahoga County, OH, see app. A.
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Chapter 3The Need for Outreach and Case Management l 111 these caregivers were peoples lack of knowledge about services and peoples inability to afford services. In addition, many of the caregivers said that certain characteristics, feelings, and perceptions are barriers to service use for people in general and were reasons they did not use services themselves. The reasons these caregivers identified are listed in table 3-2. Researchers in the study conducted for OTA in Cuyahoga County, Ohio, also asked 24 representatives of community agencies that provide services for people with dementia to identify barriers that kept people with dementia and their caregivers from using services (186). As noted in chapter 2, all 24 agency representatives said that their clients lack of knowledge about available services was often or occasionally a barrier to the use of services, and most (87 percent) of them said that their clients lack of financial resources to pay for services was often or occasionally a barrier. In addition, many of the agency representatives said that the following personal characteristics, feelings, and perceptions were often or occasionally barriers to service use: l l l clients desire to remain independent of the formal care system (identified by 91 percent of the agency representatives); clients lack of recognition that they need formal services (identified by 96 percent of the agency representatives); clients inability to arrange services once they know the services are available (identified by 88 percent of the agency representatives); clients feeling that the recommended service was not needed (identified by 84 percent of the agency representatives); clients feeling uncomfortable about using recommended services (identified by 76 percent of the agency representatives); clients unwillingness to pay for services even though they are judged to have adequate financial resources (identified by 58 percent of the agency representatives); and clients feeling that others will disapprove of their use of services (identified by 41 percent of the agency representatives) (186). In the analysis that follows, OTA identities the personal factors-i.e., characteristics, feelings, and that may interfere with the ability or perceptions willingness of some individuals with dementia or their caregivers to use available services. A later section of the chapter discusses the implications of these patient and caregiver characteristics, feelings, and perceptions for an effective linking system. Personal Factors Related to Individuals With Dementia Most studies and commentaries about peoples characteristics, feelings, and perceptions that may limit their use of services pertain to family caregivers. Relatively little has been written about characteristics, feelings, and perceptions of individuals with dementia that may limit their use of services. At least 20 percent of people with dementia live alone, however, and up to half of these individuals have no family member or other informal caregiver to help them (see ch. 1). Such Table 3-2--Caregivers Opinions About Peoples Characteristics, Feelings, and Perceptions That Are Barriers to the Use of Services, Cuyahoga County, Ohio,1988 (N = 26) How often is it true for people in Is there a reason you did not use general? the services? usually Yes Possible barriers to the use of services (in percent) (in percent) People know what services are available but dont know how to make arrangements to use them . . . . . . . 42 50 People dont think they need the services recommended to them . 38 50 People dont use the services because they do not want to lose their independence . . . . . . . . . . 38 19 People dont recognize the fact that they need services. . . . 33 42 Using services makes people feel uncomfortable . . . . . 27 31 People are afraid others will not approve if they use services. . . 19 19 People have money but are not willing to pay for services. . . . 12 8 SOURCE: S. Eckert and K. Smyth, Methods of Locating and Arranging Health and Long-Term Care Services for Persons With Dementia, contract report prepared for the Office of Technology Assessment, U.S. Congress, Washington, DC, 1988.
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112 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias individuals make decisions about services for themselves-either explicitly or implicitly-unless a case manager, service provider, or other health care or social service professional makes the decisions for them, OTAs analysis of characteristics, feelings, and perceptions of individuals with dementia that may interfere with their ability or willingness to use available services is based primarily on two sources: case managers responses to an exploratory study conducted for OTA in five Pennsylvania AAAs (934); and OTAs informal discussions with case managers, health care and social service professionals, and others, including members of the advisory panel for this study. All of the case managers and other professionals just mentioned emphasized that many of their clients with dementia live alone and have no one to help them with decisions about services. They noted that clients who live alone with no one to help them are generally more isolated and more resistant to using services than people with dementia who have an informal caregiver to assist them. Individuals with dementia vary greatly with respect to their cognitive and self-care abilities, emotional and behavioral characteristics, and other characteristics (e.g., age, ethnicity, socioeconomic status, and coexisting physical conditions) that are largely unrelated to their dementia. As an individuals dementing illness progresses, some of these characteristics change in ways that affect the individuals attitudes about services. It is important to point out, therefore, that although some people with dementia have the characteristics, feelings, and perceptions discussed below, not all people with dementia have them. Furthermore, people with dementia who have them at one time do not necessarily have them at another. 1. Some people with dementia do not know that they need services. Because of lack of judgment, other cognitive deficits associated with dementia, or denial, some people with dementia are not aware of their own limitations. Consequently, they may not know they need services (487,934). 2. People with dementia are unlikely to know about potentiallv helpfful services. m Because of loss of memory and diminished ability to learn new information, many people with dementia cannot remember or learn about potentially beneficial services (934). People with dementia who live alone and have no informal caregiver are both physically and emotionally isolated. Even if they are cognitively able to learn about services, such individuals may not receive the necessary information. 3. Many people with dementia are not able to arrange services for themselves. Because of cognitive deficits associated with dementia, people with dementia are unlikely to be able to remember or find the names and telephone numbers of service providers. They may not understand or remember what they are told about eligibility requirements, cost, reimbursement, and other factors. They may not be able to give service providers information the providers need to initiate services. Some people with dementia cannot communicate clearly with providers. Some forget what they are trying to do before the service arrangements are complete. 4. Some people with dementia do not want anyone to know about their cognitive and other deficits and may isolate themselves and refuse services for that reason. At least in the early stages of dementing diseases, some people with dementia are ashamed of their memory loss and other impairments associated with dementia and try to conceal those impairments from other people to avoid embarrassment (535). Some people try to conceal their cognitive and other impairments because they are afraid that if the impairments are recognized, other people will try to take control of their lives (456). Anecdotal evidence indicates that some people with dementia isolate themselves completely, because they are afraid that if anyone finds out how poorly they are managing, they will be placed in a nursing home. 5. Some people with dementia are afraid of being exploited by service providers and may not use services for that reason. Because of their memory impairment and lack of judgment, people with dementia are easily exploited by anyone who interacts with them (40,286). Many people with dementia have been, or fear they will be, exploited by service providers, especially nonprofessional in-home workers (934). For that reason, they may be reluctant to use services.
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Chapter 3-The Need for Outreach and Case Management .113 Photo credit: Bill Adams Some people with dementia who live alone and have no relative or friend to help them refuse services because they are afraid of being exploited by service providers or afraid that if anyone finds out how poorly they are managing, they will be placed in a nursing home. In addition, research indicates that one-fourth to one-half of people with Alzheimers disease are paranoid. Beliefs that other people are stealing their possessions or planning to harm them are common (295,429,525,728,787). Realistic fears about exploitation may exacerbate an individuals paranoia, thus increasing his or her reluctance to use services. 6. Some people with dementia have realistic or unrealistic concerns about money that make them reluctant to use services. People with dementia who live alone and have no relative or friend to help them may have both realistic and unrealistic concerns about money that make them reluctant to use services. On average, elderly people who live alone have less income than elderly people who live with someone else (687,838). Realistically, therefore, these individuals may not be able to afford services. Some people with dementia whose memory for events in the distant past is better than their memory for events in the present may compare current prices with prices they remember from long ago and refuse to pay even very reasonable amounts for services because they think they are being overcharged. If no one else is legally empowered to spend the individuals money (e.g., through guardianship, conservatorship, or a durable power of attorney), a person with dementia can effectively refuse services by refusing Many teristics, to pay for them (181). Personal Factors Related to Informal Caregivers studies and commentaries identify characfeelings, and perceptions of family members and other informal caregivers that may interfere with the caregivers ability or willingness to use available services. The analysis that follows draws on those studies and commentaries. Not all informal caregivers of people with dementia have the characteristics, feelings, or perceptions that are discussed in this section. Nor are caregivers feelings and perceptions necessarily consistent, clearly defined, or differentiated. Moreover, caregivers feelings and perceptions change over time. If and when caregivers have the following characteristics, feelings, or perceptions, however, they are likely to be reluctant to use services. 1. Some caregivers do not regard the individual with dementia as being sick or having a disease and therefore do not perceive a need for services. Some caregivers do not acknowledge a patients confusion and unusual behavior (if any). Some ascribe the persons symptoms to normal aging. Others believe the symptoms are under the persons control-saying, for example, If she paid attention, she wouldnt be so forgetful, or He just does that to annoy me (88). The fluctuating nature of cognitive and other deficits associated with dementing diseases and the lack of overt physical signs of many of the diseases make it easy for caregivers not to acknowledge that an individual has a dementing disease, especially in the early stages of the disease (286,643,936). If a caregiver does not acknowledge that the person with dementia is sick or has a disease, the caregiver is unlikely to perceive a need for services. Ironically, some caregivers seem to resist using services because doing so would require them to admit to themselves that their relative has a dementing disease and may not recover (936). 2. Some caregivers believe that the family is morally obligated to provide all needed services for a person with dementia and that it is wrong to turn to agencies or outsiders for help.
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114 Confined Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias Probably most people believe that families are to some degree morally obligated to take care of their members. Family caregivers of people with dementia frequently express this sense of obligation. Some feel that they must take care of their spouse, parent, or other relative with dementia to repay that person for taking care of them in the past. Spouse caregivers sometimes regard caregiving as a fulfillment of their marriage vows or other solemn pacts they made with their spouse. Adult children may have promised their parents to take care of them in old age (291,514,669). Whatever the source of their sense of obligation, violating it can cause intense and prolonged feelings of guilt (514,670,933). These feelings probably arise most often when family members place the patient in a nursing home, but some caregivers also feel guilty about leaving the patient at home with a home health aide or homemaker or at an adult day center (514). The fact that in caring for a person with dementia, there are few required skills that family caregivers do not have (or believe they have) makes some caregivers feel even more guilty about using services that they couldat least in theory-provide themselves. Because of different societal expectations about the appropriate roles of men and women, women are more likely than men to feel obligated to provide all the patients care themselves (85,669,936). Likewise, certain ethnic and social groups are more likely than others to believe that families-and sometimes specific family members-are obligated to provide all the patients care themselves and that it is wrong to use paid services (330). One might expect that family caregivers who have had a difficult relationship with the patient in the past or who feel angry or frustrated about aspects of the caregiving situation would feel less obligated to provide all the patients care themselves, but research and anecdotal evidence indicate that the opposite is often true. Some of these caregivers feel guilty about their negative emotions and consequently redouble their efforts to provide all the persons care themselves (88,96,137,272,535,936). 3. Some caregivers do not feel burdened by caregiving tasks that seem extremely burdensome to other people. Caregivers who do not feel burdened are unlikely to perceive a need for services. Caregiver burden has been defined and studied in terms of: 1) patient characteristics and behaviors that create demands on the caregiver; 2) the caregivers subjective experience of those demands; and 3) the objective impact of caregiving on the physical and mental health, social participation, and financial status of the caregiver (932). Research has found a surprising lack of correlation between patient characteristics and behaviors that create demands on the caregivers and the caregivers subjective experience of those demands (244,643,668,938). Some caregivers subjective experience of burden is lower than might be expected given the objectively difficult caregiving situations they face (241,937). Moreover, many families have positive feelings about caregiving and pride in their ability to manage difficult caregiving situations (125,242,448,514,555,643). To note the positive feelings of some caregivers and the lack of correlation between patient characteristics and behaviors and caregivers subjective feelings of burden is not to suggest that caregivers of people with dementia are not burdened. In fact, research indicates that caregivers of people with dementia experience more subjective feelings of burden and more negative consequences of caregiving (e.g., increased use of alcohol and psychotropic drugs and reduced participation in social activities) than caregivers of other elderly people or other comparison groups (71,242291,296,41 1,415,610,612). The intent here is simply to emphasize the diversity of caregivers subjective experience of the demands of caregiving. Many factors mediate between patient characteristics and behaviors that create demands on a caregiver and the caregivers subjective experience of burden and explain some of the lack of correlation between them. These factors include the age and sex of the caregiver; the caregivers relationship with the patient; whether the caregiver is employed; and whether the caregiver lives with the patient. Duke Universitys studies indicate, for example, that male (primarily spouse) caregivers of people with dementia experience less subjective burden than female caregivers (291). Although older spouse caregivers are generally more objectively burdened, younger adult child caregivers experience more subjective burden (291). Employed caregivers generally experience less subjective burden than unemployed caregivers (86,198,242), but caregivers who quit work or reduce their hours because of caregiving
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Chapter 3--The Need for Outreach and Case Management l 115 responsibilities experience more subjective burden than other caregivers (86). Caregivers appraisals of patient characteristics and behaviors affect whether they experience the characteristics and behaviors as burdensome (297, 487,533,649,938). Anecdotal evidence suggests, for example, that caregivers who view a patients confusion and unusual behaviors as a direct consequence of a disease are generally less bothered by them than caregivers who view the same problems as in the patients control. Caregivers use of certain coping mechanisms, such as seeking information, problem solving and emphasizing positive feelings is associated with less subjective experience of burden (295,487,610,649,938). Lastly, the amount of social support provided by relatives, friends, and voluntary associations seems to be associated with the caregivers subjective experience of burden (242,297,487,610,749,936,937), although some studies suggest that it is the caregivers perception of social support, rather than the actual amount of support received, that correlates with their subjective experience of burden (291). Three general hypotheses have been proposed about how family caregivers subjective experience of burden changes over time (293). The wear-andtear hypothesis suggests that the longer the period of caregiving, the greater the caregivers subjective experience of burden. The adaptation hypothesis suggests that caregiving initially involves new demands for which the caregiver is unprepared, but that as time passes, the caregiver develops ways of meeting the demands and is less burdened. The trait hypothesis suggests that caregivers experience of burden remains the same despite changes in the patients condition and the passage of time. Caregivers subjective experience of burden has been shown to predict service use (291). Caregivers who do not feel burdened are unlikely to perceive a need for services even if their caregiving situations seem burdensome to others. 4. Caregivers who have devoted themselves to the care of the patient, often for years, sometimes find it difficult to give up and use paid services. Caring for a person with dementia is an objectively difficult task that takes caregivers away from other interests, activities, and relationships. To function in this role for a prolonged period, caregivers may have to commit themselves to it singlemindedly, not allowing themselves to question what they are doing or to focus on the negative aspects of caregiving. In this state of mind, they may regard the use of services as giving up and resist it for that reason. The feeling that using paid services constitutes giving up often occurs in the context of nursing home placement (96). One 76-year-old woman who placed her husband, who had AIzheimers disease, in a nursing home described that feeling as the trauma of finally having to accept the fact that you cannot care for him any longer (670). Some family caregivers also regard the use of in-home and community-based services as giving up, sometimes because they regard the use of these services as the first step toward nursing home placement (88,186). 5. Some caregivers are reluctant to use services because they fear the disapproval of relatives or friends. Family caregivers who have come to accept the need for services still may not use services because they fear criticism from others. This often occurs when one family member, particularly the spouse or an adult child, has provided all the patients care. Other relatives and friends who have been uninvolved may not be aware of changes in the patients cognitive ability and behavior or of the difficulty of caring for the person. The primary caregiver may not have told them about the problem, or they may not have been willing or able to acknowledge it. In either case, they do not understand the need for services and may criticize the primary caregiver for shirking his or her obligation to the patient by using paid services. Such criticism, or even the anticipation of it, compounds the caregivers guilt feelings and discourages him or her from using services (514,936). 6. Some caregivers are too overwhelmed with various feelings to think clearly about how services might benefit them or the patient. Alzheimers disease and other diseases that cause dementia create devastating losses for the patient and patient family. Every account of these diseases by the spouses and adult children of patients conveys the sadness and trauma for the family of witnessing the deterioration of their relative with dementia and losing meaningful aspects of their relationship with the person. In addition, problems associated with
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116 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias caregiving often cause feelings of frustration and anger. Changing roles and responsibilities within a family due to the incapacity of one family member cause feelings of anxiety and resentment. Some caregivers feel ashamed of their negative emotions, guilty for not doing more for the patient, and depressed about their own lives and the caregiving situation. Some are so overwhelmed by these feelings that they cannot think clearly about how to solve their problems (39,88,129,137,201,535, 610,916,936). Many caregivers become physically and emotionally isolated from other people because of their caregiving responsibilities. Because of that isolation, they may assume that they are the only ones who have negative feelings. Family counseling and family support groups often help caregivers understand that other caregivers have similar feelings (88,137,256,272,933,936). For some caregivers, that understanding is the first step in coming to terms with their own feelings so that they can begin to think clearly about their caregiving problems and consider possible solutions, including the use of services. 7. Some caregivers do not use services because they are unable to arrange the services. Eighty-eight percent of the agency representatives and 73 percent of informal caregivers interviewed in Cuyahoga County, Ohio, said that peoples lack of knowledge about how to arrange services is a barrier to their use of services for people with dementia. One half of the caregivers said that not knowing how to arrange services was a reason why they did not use services (186). The complexity and fragmentation of services in many communities makes it difficult for anyone to arrange services (see ch. 2). If a person with dementia has physical or other problems in addition to dementia and so requires services from several different providers, the task of arranging and coordinating the needed services can be extremely difficult. Because of the constant demands of caring for a Person with dementia, some caregivers have neither the time nor the energy to arrange services. Language and cultural differences limit some caregivers ability to arrange services. In families in which the person with dementia was the organizer or arranger prior to his or her illness, the family member who has become the caregiver may have no experience in these roles. Some people with dementia have a primary caregiver, who provides most of their care, and other relatives and friends who provide occasional assistance. These secondary caregivers sometimes help to arrange services. In 1986, 57 percent of family members who were first-time callers to a California agency that provides information about services for brain-impaired adults were not the primary caregivers (199). Likewise, a study of 25 families of persons with Alzheimers disease who had a secondary caregiver found that the secondary caregiver sometimes helped by arranging appointments and handling legal and financial matters, in addition to providing respite for the primary caregiver (749). Anecdotal evidence suggests that because secondary caregivers often help to arrange services, people with dementia who have a secondary caregiver are more likely than other people with dementia to receive formal services (483). 8. Some caregivers do not use services because they do not believe the services will help. Family members and other informal caregivers usually focus on the needs of the patient. Some caregivers fear, often with good reason, that the patient will be upset by any new service provider or new service setting, or that the patient will feel abandoned. Moreover, caregivers often are skeptical about service providers capability to care for their relative with dementia and fearful that the patient may be abused or neglected. As a result, some caregivers conclude that services will not benefit the patient (88,117,291,670,936). Caregivers who consider their own needs still may conclude that services will not help because the patient may be more agitated and difficult for them to take care of afterwards than he or she otherwise would have been. For some caregivers, services such as adult day care that require the caregiver to dress the patient and take him or her to another setting are more trouble than they are worth. Lastly, some caregivers anticipate, sometimes correctly, that they will not be able to enjoy the time away from their caregiving responsibilities because of guilt about leaving the patient with strangers and worry about the quality of care he or she is receiving. Caregivers who have a bad experience with one service or service provider for any of these reasons often are reluctant to try again (88,186,291,533,936).
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Chapter 3--The Need for Outreach and Case Management l 117 9. Some caregivers do not use services because they are embarrassed about the patients behavior. Because of the stigma associated with mental illness in our society, families of people with dementia often are embarrassed by patient behaviors, such as hallucinations, delusions, and agitation, that suggest the patient is mentally ill. Families of people with dementia who are verbally or physically aggressive also may be embarrassed by these behaviors (72,291,533,936). Some caregivers try to conceal the behaviors from other people in order to protect themselves and the person with dementia from potential embarrassment. They may choose not to use services for this reason. 10. Some caregivers do not use services because they do not want service providers in their home. Some caregivers are reluctant to use in-home services because of the loss of privacy and control that using such services may entail (450). One caregiver may not want a bossy homemaker or home health aide in his or her home. Another caregiver may not want to share the kitchen with an in-home service provider. Still another caregiver may be afraid that the service provider will notice that the caregiver has a substance abuse problem or some other problem that the caregiver would prefer to conceal. 11. Some caregivers feel uncomfortable about making decisions for the patient, including decisions about the use of services. Informal caregivers may be reluctant to assume authority for decisions for the patient (39,669). One study that compared the caregiving styles of husbands and wives of people with dementia (533) found that husbands generally were more comfortable than the wives about assumin g control of decisions for their cognitively impaired spouse. The wives worried about their husbands reactions to the decisions they made and to their assumption of decisionmaking authority. Anecdotal evidence suggests that some adult children of people with dementia also are troubled by taking over decisionmaking authority for their cognitively impaired parent. Because of one or more of the characteristics, feelings, or perceptions discussed in this section, some caregivers never use paid services for their relative with dementia. Other caregivers eventually use services, but not until long after the time when an objective observer would have said they needed help. The results of the Duke University Respite Care Demonstration Project, mentioned earlier in this chapter and described in box 3-A, emphasize the extent of some family caregivers reluctance to use services and the tendency of some family caregivers to put off using services for as long as they can, even when the services are available, affordable, and specifically designed to respond to the caregivers needs and preferences (291). Some of the features of the Duke Respite Care Demonstration Project that were at least partially successful overcoming caregivers reluctance to use services are described in box 3-A. The objectives of respite services are to prevent or reduce caregiver burden, to increase the effectiveness and quality of caregiving, and to prolong caregivers ability to provide home care for their impaired relatives. These goals cannot be met if caregivers delay using services until just before the person with dementia dies or is put into a nursing home. Thus, a major conclusion of the Duke Respite Care Demonstration Project, in the opinion of its directors, was that ways must be found to encourage caregivers to use services on a timely basis (291). One of the stated reasons why caregivers who were eligible for respite services in the Duke project did not use them or waited so long to use them was the cost of the services. Interestingly, however, their primary concern was not about current costs but about future costs (291). Caregivers participating in the project were charged for the respite services on the basis of self-perceived ability to payi.e., they were told the hourly cost for the services, asked what portion of the hourly rate they could pay, and charged that amount. Subsidies were available for up to $40 a week for 20 families per site. Overall, the caregivers paid only 20 percent of the cost of the services, and many families received totally subsidized care. Some caregivers wanted more respite services than they received but felt they could not afford the cost of services above the $40 per week cap on subsidies. These caregivers had no idea how long care would be needed for their relative with dementia, and many of the older spouse caregivers knew that they would have to spend most of their assets before Medicaid would pay for nursing home
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118 Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias Box 3-AFindings From the Duke University Respite Care Demonstration Project Regarding Family Caregivers Reluctance To Use Services From 1985 through 1987, Duke University conducted a respite care demonstration project in four counties in North Carolina. In earlier Duke studies, family caregivers of people with dementia had said they needed respite services to provide temporary relief from the constant care and supervision of their relative with dementia. The caregivers had said they wanted in-home respite services provided by individuals who were knowledgeable about the care of people with dementia. They wanted services that would be inexpensive or subsidized and that would be available at night and on weekends, as well as on weekdays. The Duke Respite Care Demonstration Project was designed to respond to these caregiver preferences. Respite care was provided by nursing assistants who volunteered for the project and were trained by Duke University staff to care for people with dementia. The respite services were available weekdays, nights, and weekends, To be eligible for the services, an individual with dementia had to live in one of the four counties served by the project and had to have a memory imp airment severe enough so that he or she could not stay alone safely. Over the 3-year period of the demonstration project, 100 families received respite services. Families used services for an average of 8 months and received an average of 8 hours of respite care per week. Although more than 95 percent of the families who used the services reported that they were helpful, only a small portion of the families who were potentially eligible for the services used them. Moreover, 50 percent of the individuals with dementia who received respite services through the project died or were placed in a nursing home within 8 months of entry into the project, and half of those died or were placed in a nursing home within 30 days of entry into the project. Some families used the respite services as a stopgap measure while they waited for a nursing home bed for the patient. Indeed some families waited so long to ask for help that a hospice model of care would have been more appropriate for the patient than the companion-type respite services provided by the demonstration project. Several features of the demonstration project were at least partially successful in addressing caregivers concerns about the use of services. The training provided for the respite workers reassured caregivers that the respite workers could care for people with dementia effectively. The training was unique in that it was open to anyone, and prospective client families were encouraged to attend This open training offered families a preview of the workers and their skills and created a sense of trust between the workers and the families. The flexibility of the respite services that were offered and the workers responsiveness to the needs of both the patients and their families also helped to overcome some caregivers reluctance to use respite services. Respite workers performed housekeeping, meal preparation, personal care, and other functions. They also took patients and their caregivers to the doctor or beauty shop and provided companionship for the caregiver as well as the patient. Because the demonstration project considered the family unit as the client, caregivers were accepted as legitimate recipients of care. The nurses who supervised the respite workers and functioned as case managers for the patients and families were another strength of the Duke project. During their monthly visits to monitor the respite services, the nurse supervisor/case managers provided a variety of services for the patients and caregivers, including screening caregivers for high blood pressure and other health problems, reviewing and revising the patient plan of care, and providing individualized teaching and counseling. As caregivers developed a trusting relationship with a nurse supervisor/case manager, they became more open to referrals, and many increased their use of other community services, The willingness of the nurse supervisor/case managers to acco mmodate patients and caregivers preferences with respect to respite workers also helped to overcome caregivers reluctance to use services. Although all the respite workers had similar training, some patients and families had strong positive or negative responses to certain workers. Sometimes it was the workers gender, age, beliefs, race, or appearance that prompted these strong reactions. When the nurse supervisor/case managers assigned respite workers in accordance with patients and caregivers preferences, the patients and caregivers were more comfortable with the services. Some caregivers fear that accepting any outside help means relinquishing family control to strangers. Having the nurse supervisor/case managers acknowledge their preferences with respect to respite workers reassured caregivers that they were still in control.
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Chapter 3-The Need for Outreach and Case Management l 119 The dependability and continuity of respite services were important to caregivers in the Duke study. Caregivers came to cherish their time off, and tardiness or absence of the worker was disappointing. For some caregivers, it was easier not to plan on time off than to plan the time and be disappointed. Continuity of respite workers was also critical to caregivers acceptance of services. With too much turnover of assigned respite workers, some families lost adaptive energy and stopped using the services. One important finding of the Duke demonstration project was that many caregivers of individuals with dementia can accept respite services more easily if the services are presented as being for the patient rather than the caregiver. At the beginning of the project, the respite services were promoted as providing relief for caregivers. It quickly became apparent that many caregivers were reluctant to spend money for relief for themselves when faced with the deterioration of a family member. When the initial approach was changed, and the respite services were presented in terms of their potential benefits for patients, caregivers responded more enthusiastically. Many of the family caregivers in the Duke project considered the use of services more acceptable if the services were connected to the health care system rather than to the social service system. Social services seemed to have a charity stigma that was troublesome to some caregivers. Moreover, some caregivers who believed that their relative was sick seemed to prefer that recommendations about services be made by a physician rather than a social worker. In 1988, Duke University began another 3-year demonstration project to test an intervention intended to facilitate the timely use of all kinds of services for people with dementia. This new project is based in a health care setting (an outpatient memory disorders clinic) because of the previous projects findings that caregivers prefer health-related services. Clinic physicians refer caregivers to social workers who are knowledgeable about services for people with dementia. The social workers then develop an individualized service plan with the caregiver and facilitate and monitor the plan over an 18-month period. SOURCE: L.P. Gwyther, Barriers to the Appropriate Use of Community-Based Services by Families of Persons With Dementia, contract report prepared for the Office of Technology Assessment, U.S. Congress, Washington, DC, June 1988. care. Given these concerns about future costs, many are unaware that they need services, or are unable to of the caregivers felt they could not afford even $10 a week for respite services. Implications for an Effective System To Link People With Dementia to Services The characteristics, feelings, and perceptions discussed in the preceding sections stop some people with dementia and some caregivers from using services. Some of these individuals probably do not need the services, but others do. For example, some caregivers who say that they do not need services or that they do not need services yet actually do need services for their own well-being and for the well-being and safety of the patient (88,514). It is unclear whether or to what extent caregivers should be encouraged to use services the caregivers say they do not want or need. On the one hand, encouraging people who say they do not want services to use them seems absurd when there are not enough services to meet the needs of people who are asking for them. On the other hand, some commentators have noted that it is often the most isolated and objectively burdened caregivers who say they do not want or need services (88,291,418,688). Likewise, some people with dementia who refuse services, or arrange services are very confused, afraid, and perhaps in physical danger because of their dementia. Everyone has a different opinion about who needs services, but there is little question that some people with dementia and some caregivers who do not use services for any of the reasons discussed in the preceding sections do in fact need services. Improved public education and information and referral programs might make it possible for some of these individuals to contact service providers on their own, but some patients and families still would not be willing or able to do so. For this reason, OTA concludes that in addition to public education and information and referral, outreach and case management are essential components of an effective system to link people with dementia and their caregivers to services. The Need for Outreach Outreach is defined in this OTA report as any active, individualized method of identifying people who need services but are unlikely to respond to public education programs or to contact an informa-
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120 Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias tion and referral source on their own. 7 Outreach may be needed for people with dementia who live alone and have no relative or friend to help them; these individuals are particularly unlikely to request services on their own. Outreach also maybe needed for overburdened caregivers who are not connected to a community agency or individual health care or social service provider. It is not clear how many patients or caregivers are included in these categories. It is clear, however, that the best possible public education and information and referral programs would not be effective in linking many of these individuals to services. Outreach to identify people with dementia who are in need of services can take any of several forms. One way to conduct outreach is to screen individuals at places like senior centers and senior nutrition sites. Another way is to have health care and social service professionals and other service providers who interact with elderly people and their families identify people with dementia who may need services. Although the two methods of outreach just mentioned would reach some people with dementia and their caregivers, neither approach would reach isolated patients and caregivers who do not go to senior centers or senior nutrition sites and who do not interact with health care and social service professionals or other service providers. A third method of outreach is to send paid or volunteer workers out specifically to look for potential clients (97). Although this method has been successful in reaching people with various kinds of service needs who would not have been reached otherwise, the method requires a major commitment of resources by the sponsoring agency and is therefore difficult to sustain for long periods of time. An outreach method that can be sustained over time and is likely to reach isolated people with dementia and isolated caregivers is a gatekeeper program that makes use of the observations of individuals such as mail carriers and utility meter readers who come into contact with many individuals in the course of their regular daily activities. The gatekeeper programs that have been implemented in Spokane, Washington, several rural counties in Iowa, and in other jurisdictions offer models for outreach that closely match the needs of isolated people with dementia and their caregivers (97, 148,456,688) 8 The Spokane program recruits mail carriers, utility meter readers, and other individuals who interact with many people in the course of their regular activities and trains them to identify isolated elderly people who may need assistance and to notify a central agency. In addition to mail carriers and utility meter readers, gatekeepers may include apartment managers, police, pharmacists, grocers, delivery persons, and others. To become gatekeepers, these individuals do not have to become case workers or counselors; they do have to be trained to notice signs that an elderly person is confused, ill, or otherwise at risk. When a gatekeeper identities an individual who seems to be at risk, the gatekeeper phones a central agency. The central agency takes responsibility for contacting the person and assessing his or her need for assistance. The Need for Case Management The term case management is used in a wide range of contexts, and its precise meaning is often unclear. Many commentators agree, however, that case management includes the five functions shown in table 3-lnamely, assessing a clients needs, developing a plan of care, arranging and coordinating services, monitoring and evaluating the services delivered, and reassessing the clients situation as the need arises (22,43,59,110,271,382,572,574,58 1, 657,757,769,891,902). As defined by OTA in this report, case management is a process that includes these five functions. Individuals with dementia who are likely to need case management include those who live alone and have no relative or friend to help them and those whose relatives live too far away to monitor their care or reevaluate their needs on a regular basis. Case management is also likely to be needed by some individuals with dementia who have an informal caregiver, including those whose caregivers are unable to define their service needs, reluctant to use needed services, or unable to arrange services for any reason. Because of the complexity and fragmen7some ~enci= and comen~ton ~ tie term outreach in a sense that is different from the sense in which it k uwd by OTA in tis rqort. ~ey use it to refer to programs or services that an agency provides outside the agency. Some of these programs and semice~.g., lectures given by agency staff members to senior citizens, caregiver suppo~ and other community groups-me effective in reaching some people with dementia and their caregivers but are unlikely to reach isolate~ confused patients or isolated caregivers. In the context of OTAs model in this repofi such programs and services are considered public education. s~e gatekq~ Pmwm in Spokane, WA, k described further in box 8-C in ch. 8.
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Chapter 3-The Need for Outreach and Case Management 121 tation of services in many communities, individuals with dementia who need several different services are likely to need case management to arrange and coordinate the services of multiple providers. It is not clear how many people with dementia or how many caregivers are included in these categories. Despite the general agreement about the five case management functions listed earlier, there are many unresolved definitional and practice issues with respect to case management. First, some commentators include other functions-e. g., case finding, screening, patient and family education, and counseling-in their definitions of case management. 9 Second, the implementation of each of the case management functions varies, depending on factors such as the goals and training of the case manager, the number of clients the case manager has, the type of the agency for which the case manager works (if any) and the other functions of that agency, and the extent to which the agency or independent case manager provides services in addition to providing case management. The same factors also influence the relative importance case managers place on different functions. Depending on these factors, for example, one case manager may focus primarily on arranging and coordinating services, spending most of her or his time making arrangements for specific services and less time on assessing the client needs and developing a plan of care. Another case manager may focus more on the assessment and care planning functions, spending most of her or his time talking with patients or caregivers about the problems they are facing and what services, if any, would be helpful. A third unresolved issue is the relationship between case management as an administrative process and case management as a clinical process. In agencies that allocate services and funding for services, case managers are frequently responsible for administrative tasks such as det ermining peoples eligibility for services, authorizing services and funding for services, and monitoring the provision of services. When case managers are responsible for these administrative tasks, the five case management functions shown in table 3-1 are modified to include the tasks. Thus, for example, the function of assessing a clients needs is modified to Photo credit: Bill Adams A method of outreach that closely matches the needs of isolated people with dementia is a gatekeeper program that relies on mail carriers and others who have daily interactions with many people to identify elderly people in need of assistance. include administrative procedures for determining a clients eligibility for services. The functions of developing a plan of care and of arranging and coordinating services are modified to include administrative procedures for selecting service providers and authorizing benefits. The functions of monitoring the services delivered and of reevaluating the clients needs are modified to include procedures to recertify the clients eligibility for services and to account for the services and funds that are used. In some agencies that allocate services and funding for services, case management seems to be primarily a series of administrative tasks intended to allocate benefits in accordance with agency or program regulations. In other agencies, case management seems to be primarily a clinical process in which the case manager functions more as a professional helper, counselor, and client advocate than as an administrator of benefits. If it were possible to make a clear distinction between case % the context of the model for a linking system described in this repo~ OE4 considers those activities that are usually involved in case finding and screening to be part of the public educatioq information and mfe~ and outreach components of the system and the assessment function of the case management component of the system. Patient and family education are considered services that maybe needed for people with dementia (see table 1-2 in ch.1). The question of whether counseling shotdd be part of the case management component of a linking system is discussed later in this chapter.
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122 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias management as an administrative process and case management as a clinical process and call one case management and the other something else, it would be easier for everyone to understand and communicate clearly about case management. In reality, however, that distinction does not hold up. Many case managers who administer benefits for their agencies perceive themselves as professional helpers, counselors, and advocates and perform the five core functions in much the same way as case managers who do not administer benefits. In a study by the University of Washington, 127 case managers in agencies that allocate services and funding for services in Oregon and Washington State were asked to rate the importance of 11 possible goals of case management (47). All these case managers jobs involved administrative tasks related to allocating services and funding for services, but the goals they identified as most important had to do with helping and advocacy. Table 3-3 lists the goals of case management in order of their average ranking by case managers in Oregon and Washington. In the view of these case managers, at least, the administrative and clinical aspects of case management are intertwined. In addition to these definitional and practice issues with respect to case management, there are many other unanswered questions about case management in a system to link people with dementia to services. These questions are discussed in a later section of this chapter. WHAT IS SPECIAL ABOUT CASE MANAGEMENT FOR PEOPLE WITH DEMENTIA? Except for anecdotes and case histories, very little has been written specifically about case management for people with dementia. OTA is not aware of studies specifically designed to compare case management for people with dementia and case management for nondemented people. Many research and demonstration projects that involve case management have included subjects with dementia, but with a few exceptions, the findings of those research and demonstration projects have not been analyzed for demented v. nondemented subjects. Table 3-3-Ranking of Certain Goals of Case Management by Case Managers in Oregon and Washington State Rank Goats 1 2 3 4 5 6 7 8 9 10 11 To assure that services given are appropriate for the needs of a particular client. To facilitate the development of a broader array of noninstitutional services. To follow clients to guarantee the continued appropriateness of services. To improve client access to the continuum of long-term care services. To target individuals most at risk of nursing home placement in order to prevent inappropriate institutionalization. To support the clients caregivers. To serve as bridges between institutional and communitybased care systems. To promote quality and efficiency in the delivery of long-term care services. To enhance the coordination of long-term care service delivery. To prevent inappropriate use of hospital inpatient services. To contain costs by controlling client access to services. especially high Cost services. .SOURCE: C.D. Austin, E.F. Borgatta, E.A. Roberts, et al., Improving Access for Eiders: The Role of Case Management: Final Report (Seattle, WA: University of Washington, January 1987). Some aspects of case management are undoubtedly similar for demented and nondemented people, but it is easy to imagine ways in which the characteristics and care needs of people with dementia might change the case management process, make it more difficult, and/or limit its effectiveness. The process of assessing an individuals needs may be more difficult in the case of individuals with dementia, e.g., because such individuals often are not a good source of information. The process of planning care maybe more complicated for individuals with dementia because of the fact that some demented individuals are unable to participate in decisions about services. l0 The process of arranging services may differ for people with dementia because such people (unlike many nondemented elderly people) often are not able to assist with the arrangements. It also may be more difficult to find services for people with dementia or to select an appropriate service provider. Since people with dementia are often unaware that they need help, they may be more likely than people without dementia to refuse needed services. Lastly, the process of monitoring and evaluating services may be more difficult l~e problem involved k det ermining the decisio nmaking capacity of individuals with dementia and making deeisions about services for people with dementia who are not capable of making decisions for themselves are discussed in ch. 4.
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Chapter 3--The Need for Outreach and Case Management l 123 if the individual receiving the services is too confused to report problems with the services. To explore the question of what is different or special about case management for people with dementia, OTA contracted for an exploratory study that involved interviews with case managers in five Pennsylvania AAAs and family caregivers, most of whom had interacted with the AAA case managers (934). The results of the study are discussed in the following section. Findings From an Exploratory Study of Case Management for People With Dementia In 1988, a study was conducted for OTA in Pennsylvania to learn about: case managers views regarding the unique aspects and difficulties of working with people with dementia and their families, and family caregivers views regarding the process by which case managers arrange services for their relative with dementia (934). 11 The study was done in four counties in central Pennsylvania and involved in-depth interviews with 15 staff members from five AAAs and 46 family caregivers of people with dementia, most of whom had received some services through one of the AAAs (934). The 15 AAA staff members who were interviewed for this OTA study included the case management supervisor and two other staff members selected by the supervisor at each AAA; the staff members selected by the supervisors included eight case managers and two case aides. All 15 AAA staff members are referred to as case managers in the following discussion. The AAAs in Pennsylvania provide some services directly or through contracts with other agencies. Elderly people who come to an AAA in need of services are generally evaluated by a case manager, who may then arrange the services for them. If they are not eligible for the AAAs services or if they need services the AAA does not provide, the case manager refers them to other agencies. Case managers in Pennsylvanias AAAs do not necessarily perform all five case management functions for all their clients, and the AAA case managers interviewed for this OTA study interacted with some of their clients only briefly to determine eligibility or refer them to other agencies. In that sense, they were not always providing case management. Moreover, some of the family caregivers the case managers interacted with may not have needed case management. The observations of the case managers and the family caregivers are instructive, however, with respect to the question of what is special about working with and arranging services for people with dementia. The samples of case managers and family caregivers who were interviewed were both samples of convenience, not representative groups, and thus allow for a preliminary (rather than a definitive) inquiry into questions about working with and arranging services for people with dementia. The case managers did not know which family caregivers were interviewed for the study. When they spoke about families of people with dementia, they were reflecting on their entire caseload, and their comments do not refer specifically to families that were interviewed. Perceptions of the Case Managers The interviews with the case managers were based on a questionnaire designed to elicit information about the types and adequacy of services provided for people with dementia and problems case managers confront in working with and arranging services for people with dementia and their families 12 (934). Although discussions with the case managers inevitably turned to the limited availability of needed services, the primary focus of the interviews was the linking process. The Types and Adequacy of Services Provided for People With Dementia.--Most of the case managers said that some of the needs of people with dementia are being met (934). They indicated a need for more respite services and more in-home personal care. Another problem noted in some counties was the insufficient availability of nursing homes and board and care facilities able to manage patients with 11A comple~ report of the OTA-COmmiS sioned study in Pennsylvania is available from the National Technical Information Service in Spri.ngf3el~ VA (see app. A). lzTo e-e that the case managers had a uniform set about what was meant by dementiz they were told that the researchers were interested in their memory-impaired clients. Memory-impaired was defiied as having a diagnosis of Alzheimers disease or dementia and/or signillcant functional impairment due to cognitive dei3cits. 89-150 90 5
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124 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias disruptive behavior. A third problem noted by some of the case managers was transportation. They said that although people with dementia often need transportation-e. g., to a doctors appointment-the existing transportation services are not appropriate for them because no escort is provided, and the patient could get lost, forget why he or she was out, or encounter other difficulties. Even with existing resource constraints, some case managers showed considerable ingenuity and persistence in stretching limited resources to the maximum (934). One case manager commented: Theres a huge gap between what is needed to maintain someone in the community and when they need nursing home care. We patch and bandaid, and people see it as a lifeline and are glad for it (934). Unique Aspects and Difficulties of Working With People With Dementia and Their Families Several general themes emerged in case managers comments about working with people with dementia and their families (934). First, the case managers unanimously agreed that working with people with dementia and their families takes more time and effort than working with other clients. Second, the case managers indicated a need for more flexibility in their jobs to work effectively with dementia clients. They said they need to be able to take the person to a service program for the first time, to be present when an aide frost comes into the home, and to take clients to the doctor, drug store, or other places. These kinds of assistance may be needed even for clients with a supportive family, since the family is not always available. Problems in Working With People With Dementia Who Live AloneThe case managers said that many people with dementia who are served by the AAAs live alone and have no family or other caregiver to help them (934). They noted several ways in which working with these patients is difficult. One problem is getting the patient to recognize his or her need for help and to accept services. They also pointed out that assessment is difficult if a reliable informant is not available at the initial assessment. One said: You have to call other people if the pieces of the dementia patients story dont fit. You have to put a puzzle together. Call a daughter. Find out who else is involved. To determine eligibility, you have to hunt for papers. Finding information takes time (934). The case managers said that people with dementia usually cannot make arrangements for services themselves or remember arrangements that are made for them. One case manager noted: When they need SSI or other benefits or services, they cant do it for themselves. They couldnt handle the phone calls or remember the details (934). Case managers said that people with dementia who live alone are often fearful and suspicious. One said that she calls clients with dementia before a service provider is scheduled to arrive: I make them aware someone else is coming to provide the service, and its not me who will be coming out. A lot of them are skeptical and have been taken advantage of (934). Another case manager described how she works with a confused client who lives alone and has no family: To get in to see her, I told her I was from the senior center, not the agency. That seemed to help establish trust at first. She doesnt really know who I am or where I come from, but she thinks Im a godsend. We go from problem to problem with her. I take care of one need, and then wait for a new problem to arise (934). A third case manager told about a case of hers that illustrates the difficulty of working with someone who cannot report his or her problems (934). The client lived alone in a senior housing facility. Her personal hygiene was sometimes a problem, but the case manager did not think to check her feet. One day, a home health nurse visited the client for other reasons and found the womans toenails had curled around and were growing into the bottom of her feet. The case manager had taken her to the doctor a week earlier, but the doctor did not check her feet either. A nurse comes to the senior housing facility once a week but stays in her office, waiting for people to come to her. As the case manager noted, confused residents cannot remember when the nurse is there and often fail to report problems, as happened in this instance. Some case managers were clearly more comfortable than others working with dementia patients who live alone, and they seemed to do it well (934). They would find an entree, establish a relationship and give the client reminders rather than expecting him/her to remember. The case managers who appeared successful with this task also tended to
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Chapter 3The Need for Outreach and Case Management l 125 view it as a challenge in which they would somehow piece together a service program from the patchwork of available services. Sometimes this task involved bending procedures a little, and it always involved spending more time with the person than with other clients. Problems in Working With Families of People With Dementia-The case managers said that families of people with dementia often wait until a crisis to seek help (934). At that point, the family may be too desperate to wait for services, or the available services may be insufficient to meet the patients and family 's needs. One case manager said: A lot of times, the family has burned out before we get the referral. They want us to do everything. They want someone to come stay with the patient, help with bathing, or do the finances. Families dont give us the time to work out all these things, though we could do it (934). The case managers cited many of the same reasons discussed earlier in this chapter as to why families wait until a crisis to seek help, e.g., families believe they should care for their own, they do not want to leave their relative with strangers, and they feel guilty about using services (934). The case managers also said that some families are deterred from seeking help because the patient denies needing help or resists when it is provided. Although most of the case managers noted families reluctance to seek help, two case managers reported that families of people with dementia were more eager than the families of other elderly clients to use services (934). One case manager said: Families are anxious, stressed, overwhelmed, scared. They will seek out help more readily than families of physically disabled (934). According to the case managers, the amount of stress experienced by families of people with dementia contributes to the difficulty of helping them (934). This problem is exacerbated, of course, when families wait until they are at the end of their rope to seek help. Some case managers distinguished between families who are already involved with the patient and families who are drawn in reluctantly (934). In their view, reluctant families become involved only when the situation has gotten so serious it cannot be ignored, or when they are told to get involved by someone else, such as the patients doctor, neighbors, or the AAA. Often they are particularly reluctant to get involved if doing so would require managing the patients finances or placing the patient in a nursing home. The case managers said reluctant families are difficult to work with because they often do not follow through on treatment plans. Several case managers commented on some families fear that agencies will take control of the patient (934). One said, There is a fear of agencies, that they may pull the elder out of the home. Another said, They fear I will take over, and I wont. This issue of control arose again strongly in the interviews with families. Some case managers raised another issue that was difficult for them in working with families of people with dementiathat the families persisted in providing care at home beyond what the case manager or physician felt was appropriate (934). Four case managers referred to families refusal of nursing home placement in these circumstances as denial and saw their role as breaking down the familys denial and arranging nursing hone placement. They put more emphasis on that activity than on arranging services for home care. OTAs contractors concluded that these case managers were doing what they felt was in the patients and familys best interest. The case managers felt that some families were coping with intolerable caregiving situations and that too few services could be provided to support continued caregiving at home. Other case managers saw their role as doing what they could to support home care (934). They provided information about and assisted with nursing home placement, but they wanted families to make the decision about placement, except in cases of clear danger to the patient. Perceptions of the Family Caregivers The 46 family caregivers interviewed for the study in Pennsylvania included some caregivers who were identified by the AAA case managers and some who were recruited independently (934). The primary sources of the independent sample were support groups, an adult day program, and other sources. Despite these sources, it turned out that all but two of the caregivers had been in contact with
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126 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias and received at least minimal assistance from an AAA. 13 All the caregivers were contacted by an interviewer who explained the study and arranged an interview (934). Interviews were conducted in the familys home or the patients home if they lived separately. There were very few refusals. The mean age of the patients whose caregivers were interviewed was 77 years (934). Thirty-six of the patients were living at home; 9 were living in a nursing home or board and care home; and 1 had just died. All but four of the patients had a diagnosis of Alzheimers disease or another dementing disease, and in those four cases, the patients history and functioning were consistent with dementia. The mean age of the 46 caregivers was 55. Eighteen of the caregivers were spouses of the patient; 20 were daughters or daughters-in-law, and 8 were other relatives (934). Duration of caregiving averaged 4 1/2 years, with a range of 3 months to 14 years. Nineteen of the 46 caregivers (41 percent) said they had someone they could count on as backup caregiver, whereas 27 (59 percent) said they did not have a backup caregiver. Sources of Information About Services-The caregivers said they most often learned about formal services from the AAA, physicians, and other family members (934). When asked whom they would turn to for more information, caregivers noted the AAA most frequently. Many caregivers said the patients doctor did not refer them for case management or for home care. Most physician referrals apparently were for nursing home care. Overall, about half the family caregivers said they had received enough information about services, and half said they had not. Forty-one caregivers (89 percent) said it would be extremely or very helpful to have a central source of information about services. Use of and Satisfaction With Formal Services The caregivers reported using various kinds of services, including personal care (22 families), respite care (14 families), and adult day care, homemaker, legal and financial services, and homedelivered meals (11 families each) (934). They generally were satisfied with the services they were using. Almost unanimously, however, they said they could use a little more help. Sometimes, a little more was a global understatement of the desperation the caregivers felt, but in other cases, it meant that a little assistance-an occasional phone call or a couple of hours of respite a weekwould go a long way. Despite their general satisfaction with services, some caregivers complained about respite and personal care workers who did not show up or were poorly trained (934). Many of the caregivers also complained about the inflexibility of the service system. They were upset about not being able to schedule helpers at a convenient time or specify a particular worker. They complained about the lack of services on evenings and weekends and about services that excluded patients with behavioral or emotional problems or severe fictional impairments. As a result of these difficulties, many caregivers were frustrated (934). Some dropped out of the service system altogether and used no services. A few hired home health aides privately. Others said they learned how to work with agencies to get what they wanted. One caregiver said that she had gone through three home health agencies and 10 nurses whom she thought were not adequate. She now has worked out an arrangement with a home health agency so they send only their better trained nurses. The caregivers said that they could accept services more easily if the services were therapeutic, not just babysitting (934). Moreover, like the caregivers who received services from the Duke respite care demonstration project, many of these caregivers said they had difficulty accepting services if the focus is on their needs and that they could accept services more easily if the services are for the patient. Many of the caregivers did not see a connection between their own physical and psychological well-being and their ability to continue caring for the patient. Interactions With AAA Case ManagersAs mentioned earlier, all but 2 of the 46 family caregivers in this study had had at least some contact with an AAA (934). The caregivers overall satisfaction with all these interactions was quite high. One caregiver, a 53-year-old woman who was caring for her mother-in-law with Alzheimers disease, said: 13This fiiding should not& interpreted as indicating that most fandies are in contact with an AAA or are r@X.iv@ services frOm ~AA& tie re~t is probably a function of the sampling meth@ since people who attend SUppOrt groups or a day care program are likely to use other services (934).
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Chapter 3--The Need for Outreach and Case Management l 127 The AAA is the best link for help with the elderly. We have been well pleased. We recommend them to anyone with an elder. They can link you up to all the help that is out there. They are concerned, they follow-up, and they do their homework (934). Another caregiver, a 63-year-old woman who had taken care of her mother with Alzheimers disease until the mother was placed in a nursing home, also was very pleased with AAA case management. The primary assistance she received was an assessment and help with nursing home placement. She said: The AAA returned calls, the staff was compassionate and helpful. They gave us time. They didnt make us feel unimportant or an imposition (934). Despite the caregivers generally positive attitudes about AAA case management, they did note several problems (934). Caregivers complained about overly bureaucratic procedures, particularly when steps they considered unnecessary were required in order to arrange services. For example, one caregiver felt she received a runaround when scheduling respite services that were already authorized by the AAA case manager. She said she frost had to call the case manager, who then called the agency providing the services. In her view, this process led to additional slipups. She said she would have preferred to arrange the services herself. Other caregivers agreed. When asked, If someone were available to arrange services, who would you prefer that person to be? 12 caregivers (26 percent) said they would prefer to do it themselves; 29 (63 percent) said an agency should do it; 3 (7 percent) said both; and 2(4 percent) named other alternatives. One caregiver, a 33-year-old woman who had been caring for her mother-in-law for 14 years, said that the critical factor in case management is having someone to talk to (934). She said the AAA case manager had helped her by spending time with her, allowing her to talk out some of her frustrations, but that she would have preferred to arrange services herself. Some of the caregivers understood the process by which AAA case managers authorized and arranged services, but most did not (934). Several said they did not know how they were identified to receive help in the first place. They said someone from the AAA just showed up one day, or they received a letter saying they were eligible. One caregiver said he felt the AAA came in almost surreptitiously, without involving him. Some said they did not understand how benefits were determin ed, but they did not want to ask because they were afraid of losing the services they were receiving. The primary concern of caregivers was not case managers, however, or the positive or negative aspects of the case management process. For them, the bottom line was services (934). Several caregivers were angry at the AAA case manager or the AAA because of policies that denied them services they needed. OTAs contractors in Pennsylvania reported the following example: One 49-year-old widow was taking care of both her 87-year-old mother with dementia and a severely disabled 29-year-old daughter. The mother was attending a day care program, which the caregiver liked. She also got some in-home help for her daughter. She used this help to care for both her mother and daughter but felt that doing so was unfair to the helper. Because of an AAA policy, she was not able to get any in-home help for her mother as long as the mother was in the day care program. She did not understand this policy and was very angry with the AAA (934). An important aspect of satisfaction for caregivers was having a relationship with someone in the service system who would give them emotional support and help them navigate the system (934). For some caregivers, this person was the case manager; in many cases, however, it was someone else, e.g., the person who delivered meals to the home or the aide who provided personal care. To the caregivers, having an advocate in the system seemed to make the difference between getting what they needed or giving up. OTAs contractors noted that such a relationship seemed more important for less educated and less sophisticated caregivers. Implications for an Effective System To Link People With Dementia to Services The overriding consensus of the 15 case managers in the Pennsylvania AAAs was that working with and arranging services for people with dementia is more difficult and more time-consumin g than working with and arranging services for their other clients (934). Many people with dementia deny their need for services and refine services. They cannot provide information or remember arrangements that have been made for them. Some are fearful and suspicious. Case managers need special skills to work with these patients. Problems that arise in working with families of people with dementiaparticularly
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128 Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias Photo credit: Alzheimers Case managers need special skills to work effectively with peel e, f All Association and Rush-Presbyterian/St. Lukes Medical Center ple with dementia and their families. problems related to the tendency of families to hold back from seeking services until the situation is desperate-also may require special skills. Judging from examples the AAA case mangers gave, OTAs contractors concluded that some of the case managers dealt with people with dementia and their families in very skillful ways (934). The case managers had received no formal training for this ability, however. Given the difficulty of providing case management for some people with dementia and their families, it is reasonable to suggest that case managers need special training to work effectively with these patients and families. The majority of the 46 family caregivers interviewed for the study in Pennsylvania were satisfied with the services they had received and with their contacts with the AAA case managers (934). Their primary concerns were that not enough help is available and that the quality of personal care and respite services is sometimes poor. Another concern of the family caregivers was control (934). Caregivers want to have control over services, particularly in-home services. They want to have some say as to when services are provided and who provides them. A lot of resentment was directed at the AAAs for not allowing families to request a particular nurse or aide. They also were angry when bureaucratic procedures resulted in services not being delivered. One-fourth said they would rather arrange services themselves than have a case manager act as an intermediary. OTA does not know whether families of people with dementia are more likely than families of nondemented elderly people to want to retain control over services and how the services are provided. It is possible that families of people with dementia become more protective than families of nondemented people in response to the diminishing ability of the dementia patient to plan or advocate for himself or herself. In any event, a recognition of families desire to have control over services should be built into the case management component of a system that links people with dementia to services. One aspect of control is understanding the rules of the game-in this context, how eligibility is determined and services are authorized (934). Many of the family caregivers interviewed for the study in Pennsylvania were mystified about how the level of service was determined or why they received help at all. This lack of understanding undermines their sense of control. In the view of the advisory panel and contractors for this OTA assessment, an impor-
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Chapter 3-The Need for Outreach and Case Management l 129 tant objective of case management with families of people with dementia is to help them understand the basis for decisions about services so as to increase their sense of control. Finally, some case managers interviewed for the study regarded the more impaired dementia patients as needing institutionalization, regardless of the their families wishes (934). They believed that the families could not continue to provide adequate care and that available services were not sufficient to supplement the families efforts. Other case managers made extensive efforts to support home care, even when services were limited, if that was the preference of the family. These differences in approach were due to several factors, including how comfortable case managers were in working with people with dementia and the advice they received from experts, including one geriatric assessment team that frequently urged nursing home placement. In the interactions of health care and social service professionals, case managers, and families, the issue of when institutionalization should occur is often couched as a professional or even medical decision. Except in cases where there is abuse or neglect, however, the timing of institutionalization is probably more appropriately and realistically viewed as a question of individual values and perceptions. Some families are willing to make tremendous sacrifices to keep a relative at home, and, as discussed earlier, some apparently do not perceive objectively difficult caregiving situations as overwhelmingly burdensome. It is probably inappropriate for case managers to regard these enduring caregivers as neurotic or to label their feelings as denial. That some caregivers have conflicted motives is obvious; they may also have sincere and profound beliefs about what they are doing. They often continue home care despite intense pressure to institutionalize from doctors, service providers, and other family members. If a case manager pushes family members to institutionalize their relative, they may withdraw from the service system completely and consequently receive no services (934). It is the opinion of OTAs contractors and the advisory panel for this study that except in cases of abuse or neglect, case managers should inform family caregivers about all their options, including nursing home placement, and allow them to make the decision. The question of what constitutes sufficiently poor family care to trigger a decision to institutionalize a dementia patient over the objections of his or her family requires further analysis. UNRESOLVED QUESTIONS ABOUT CASE MANAGEMENT IN A SYSTEM TO LINK PEOPLE WITH DEMENTIA TO SERVICES Although OTA has concluded that case management is an essential component of an effective system to link people with dementia to services, many questions remain to be answered about case management in such a system. Several of these questions are discussed further below: To what extent should a linking system try to maintain at home individuals with dementia who live alone and have no informal caregiver? Should counseling be part of case management in a linking system? In general, should families be regarded by a linking system as co-case managers or co-clients How many people with dementia need case management? How much would case management in a linking system increase the use of services? The answers to these questions have implications for the design and operation of the case management component of a linking system and for the job description and skills of case managers employed by the system. To What Extent Should a Linking System Try To Maintain at Home Individuals With Dementia Who Live Alone and Have No Informal Caregiver? At least 20 percent of people with dementia live alone, and as many as half of them have no informal caregiver to assist them (see ch. 1). In developing a system to link people with dementia to services, it is important to decide how the system should respond to these individuals, who may require a lot of involvement on the part of a case manager if they are to remain in the community. People with dementia who live alone and have no informal caregiver are at risk for injuries and other problems. Some home health care agencies will not accept them as clients because the agencies do not want to be liable for problems that occur when the
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130 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias individuals are alone (239). One question in developing a linking system is the degree of risk to an individual that can or should be tolerated, but that risk needs to be weighed against problems people with dementia encounter in institutional settings. A related question is what liability the linking system or its case managers would incur for people with dementia who live alone, have no informal caregiver, and are maintained at home with intermittent services and supervision by a case manager. Both questions require further analysis. The case managers in the study conducted for OTA in Pennsylvania said that providing services that are not ordinarily considered case management e.g., taking a client with dementia to a program the first time, being in the persons home when a new aide arrives, or driving the person somewhere if no other source of transportation is available-is sometimes essential in implementing a clients plan of care (934). Such services are especially likely to be needed for people with dementia who live alone and have no informal caregiver. Sometimes, a case manager can arrange to have these services provided by a volunteer or a paid chore worker. But what if that is not possible and the case manager judges that failure to provide the services could cause a major disruption to the clients already precarious functioning? Should case managers employed by a linking system provide the services themselves? Some private geriatric case managers who are hired by patients or families to provide case management provide services that are peripheral to case management but may be essential to supporting the patient and maintaining the patients independent functioning. A 1986 survey of private geriatric case managers conducted by Interstudy found that 16 percent of the 117 respondents provided transportation; 16 percent provided homemaker services, and 11 percent provided chore services (357). In some cases, however, the services were provided by case aides or other support staff members who worked with the case manager. Some case managers also make themselves available to their clients at any time for emergencies. Eighteen percent of the private geriatric case managers who responded to the Interstudy survey just cited said they provided a 24-hour hotline (357). Some public and private case management agencies also provide a 24-hour hotline (746). One private geriatric case manager, speaking to a National Council on the Aging symposium on case management, told about an instance in which one of her clients, an elderly woman with dementia who was living alone, became very confused in the middle of the night. Ordinarily, a paid homemaker helped the woman get ready for bed before she left for the evening. On this particular night, the usual routine was not followed for some reason. The woman with dementia became agitated and called a friend, who then called the case manager. The case manager went to the womans house, helped her get into her nightgown, and waited until she fell asleep to leave (136). OTA does not known whether instances like this occur more often in the case of individuals with dementia than in the case of other individuals receiving case management, but such instances do raise questions about the appropriate role and functions of case managers. If the occasional provision of non-case-management services enables case managers to maintain at home clients with dementia (and perhaps other clients) who live alone and have no informal caregiver, should a linking system build into the case managers job description sufficient flexibility to allow them to provide such services? Alternatively, should case aides of some sort be available in the system to provide the services at the direction of the case manager? These questions remain to be answered. Should Counseling Be Part of Case Management in a Linking System? In the context of a linking system, counseling is most likely to be needed for caregivers who do not use services because they feel guilty about accepting help, fearful that others will disapprove of their use of services, ashamed of the patients behavior, reluctant to make decisions for the patient, or simply too overwhelmed by various feelings to think clearly about solutions to their problems. Counseling also may be needed when family members disagree about the patients care and what services are appropriate. Lastly, counseling may be needed for some patients who are reluctant to use services, although in many cases the effectiveness of counseling for patients is problematic. It is unclear whether counseling should be part of case management in a linking system or whether patients and their caregivers who need counseling should be referred by the linking system to other sources of counseling. If counseling is to be pro-
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Chapter 3-The Need for Outreach and Case Management l 131 vialed by the linking system, however, the individuals hired as case managers by the system must have the necessary education and training to provide it. In General, Should Families Be Regarded as Co-Case Managers" or "Co-Clients" by a Linking System? Families of frail older people frequently perform case management tasks themselves, acting as intermediaries between the older person and formal service providers (85,92,1 10,467,477,753,778). Some commentators have suggested that maximizing a familys performance of case management tasks might increase the familys satisfaction with services, meet patients needs more appropriately, minimize costs, and eventually decrease the need for a paid case manager (271,753,754,758). Despite this suggestion, few attempts have been made to help families become better case managers (175). One project did train and assist some families of elderly people (including some families of people with dementia) to perform case management tasks, such as arranging and monitoring services (753,754,758). Together, a social worker and a family member developed a case management service plan that allocated case management tasks between them. Family members were given information about community resources, and the social worker contacted them at least every 2 weeks to answer questions, monitor their performance of case management tasks, and provide supportive counseling. The results of the project showed that the families who received the training and assistance accomplished significantly more case management tasks than did a control group of families that did not receive the trainin g and assistance. Additionally, the total duration of services was significantly shorter for the older people whose families received the training and assistance than for older people whose families did not (753). Interestingly, whether families received this training and assistance was not the largest predictor of their performan ce of case management tasks. The largest predictor was the cognitive status of the patient. For both the experimental and control groups, families of people with dementia were more likely than families of other individuals to perform case management tasks (753). A linking system could regard families primarily as co-case managers and attempt to maximize families performance of case management tasks by providing training and assistance to help them perform the tasks successfully. Alternatively, a linking system could regard families primarily as part of the client unit, or co-clients, whose needs are assessed along with the patients needs and incorporated into the patients care plan. Families differ, of course, and whether a specific family is most appropriately regarded as a co-client or a co-case manager depends on the characteristics of the family and the caregiving situation. The presumption of the system--i.e., whether the system generally regards families as co-case managers or as co-clients-is likely to affect how comfortable families are with the system. Certainly, at least some families of people with dementia would prefer to be regarded as co-case managers than as co-clients, because the role of co-case manager would allow them a greater degree of control over services that may be used for their relative with dementia. Even if a linking system generally regarded families as co-case managers, some families would be more appropriately treated as co-clients. Determining which families could function successfully as co-case managers (with or without training and assistance) and which families should be treated as co-clients would require difficult judgments by case managers in at least some instances. To make these judgments and to help families become better case managers would require special skills on the part of the case managers employed by the linking system. How Many People With Dementia Need Case Management? Although OTA has concluded that case management is an essential component of an effective system to link people with dementia to services, an important question that remains to be answered is how many people with dementia need case management. Most people would probably agree that people with dementia who live alone and have no informal caregiver to help them all need case management at least at the point when they become unable to plan for themselves or manage their affairs independently (a point that to some extent rests in the eye of the beholder).
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132 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias A somewhat more difficult question is how many people with dementia who have an informal caregiver need case management. As noted in the previous section, families often perform case management tasks for elderly people, including people with dementia. If accurate information about services and funding for services were readily obtainable, more families and other informal caregivers would be able to arrange services themselves, and fewer people with dementia would need case management. If training and assistance were available to help families and other caregivers perform case management tasks, as suggested above, still more caregivers would be able to arrange services themselves. On the other hand, some family caregivers have intense feelings that still would make it difficult or impossible for them to arrange services themselves, as illustrated in one womans description of the process of placing her husband in a nursing home: Finally the dreaded conclusion was reached that he had to go to a nursing home. No one can imagine the devastation I reached at this time. But it had to be done, so I had to find a way to cope. At the time of transition to the nursing home, the most important help I received was from the social service worker. She made phone calls and gathered and gave me information. There was nothing easy about it, but she was a real buffer (670). The woman just quoted probably could have made the phone calls and arranged for her husbands admission to a nursing home herself if she had not been so upset. There are also situations in which the informal caregiver of a person with dementia is almost as impaired as the patient and is totally incapable of arranging services. In both types of situations, most people would probably agree that case management is needed for both the caregiver and the person with dementia. The advisory panel for this OTA study was unanimous in the view that not all people with dementia who need services also need case management. The panel particularly rejected the idea that all family caregivers need a case manager to help them define their service needs. While recognizing that some caregivers need help to define their service needs, panel members pointed out that many family caregivers can define service needs themselves. In apparent conflict with the advisory panels view that not all people with dementia who need services also need case management, many of the congressional proposals to provide expanded longterm care services that were introduced in 1988, 1989, and 1990 (100th and 101st Congress) specify that everyone who received the expanded services would also receive case management. Under these proposals, even people who have informal caregivers who are (or believe they are) capable of defining their needs and arranging and monitoring services themselves would receive case management. The case management in the congressional proposals generally includes both administrative tasks (e.g., authorizing services in accordance with program regulations) and clinical tasks (e.g., helping people define their service needs and select appropriate services in their communities) .14 One way for Congress to address this apparent conflict would be to conclude that case management is, in effect, the price of receiving long-term care services and to assume that caregivers and others will be willing to accept case management to get the services-probably a reasonable assumption in most cases. Case management is an expensive addition to the cost of services, however (105,114). For that reason, Congress might prefer to limit the case management that is required for everyone to those administrative tasks that are essential to allocate services in accordance with program regulations, and to require or allow case management beyond those administrative tasks only for people who are identified as needing them by some specified criteria. As noted earlier, the term case management means different things to different people. Thus, various commentators views about whether case management is needed in certain contexts or for certain types of people may or may not refer to the same case management. In addition, although a major purpose of case management is to help people obtain the services they need, ideas about what case management is and who needs it have come almost exclusively from academics, administrators, policy analysts, and case managersnot from people who might need or use it. When people who might need or use case management are asked, their opinions about case management are quite different from the IA~e dis~ction between mse management as an administrative process in which the case ~mger is P rimarily responsible for allocating services in accordance with program regulations and case management as a clinical process in which the case manager functions more as a professional helper and advocate than as an administrator of services was discussed earlier in this chapter.
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Chapter 3-The Need for Outreach and Case Management l 133 ideas of those other individuals, as illustrated by findings from several studies and a fee-for-service case management program discussed below. The discussion below is not comprehensive, nor is it intended to suggest that the ideas of people who have used or may use case management are necessarily correct about what case management is and who needs it and that other peoples opinions on these topics are incorrect. Rather the discussion is intended to highlight certain opinions of current and potential users of case management that are relevant to the questions of how many people need case management and how many might use it. Some insight into peoples opinions about case management can be derived from the findings of market research conducted for the Robert Wood Johnson Foundations Supportive Services Program for Older Persons. The research indicates that many older people and their caregivers do not understand what case management is or why they might need it (318). The Supportive Services Program for Older Persons is intended to demonstrate the feasibility of developing a private market for in-home and community services and to design a package of such services that people will purchase. The first phase of the Supportive Services Program involved market surveys in 13 localities to determine the demand for services of various kinds. The market surveys found that elderly people and their caregivers have three problems with case management: They do not see themselves as cases to be managed. They do not understand why they would need a special person or a special set of functions in order to obtain services. They do not understand why they should pay for something that, in the private sector, might be viewed as customer service or public relations (318). Many people who were contacted for the market surveys expressed confidence in their ability to define their own service needs and did not think they would need a case manager to help (91). Case management generally is perceived by academics, administrators, policy analysts, and case managers as a series of interrelated steps that constitute a logical problem-solving process that is directed by a case manager. The results of interviews conducted for OTA with 46 family caregivers of people with dementia in Pennsylvania suggest that the caregivers had different perceptions about case management. For example, there is no evidence from the interviews that the caregivers perceived case management as a logical problem-solving process or that they regarded the case manager as the central figure directing that process (934). Family caregivers who were looking for services used various sources of information and assistance. Some of them relied less on a case manager for help in negotiating the service system and obtaining needed services than they relied on an in-home aide, a volunteer who delivered meals, or the director of an adult day care program. These caregivers saw themselves, rather than the case manager, as directing the case management process. The experiences of Connecticut Community Care, a private case management agency, suggest that people often want only certain case management functions. Connecticut Community Care has been providing case management for publicly funded long-term care programs for some time and began offering fee-for-service case management in 1986 (75). The agency markets a comprehensive case management service that includes all the case management functions discussed earlier in this chapter, plus counseling, but people often purchase single case management functions-e. g., client assessment or service coordination. Many of the agencys case managers have been uncomfortable with splitting up what they perceive as interrelated case management functions-separating client assessment from care planning, for example, or care planning from service arrangement. Connecticut Community Cares fee-for-service case management is controlled by the client, not the case manager, and many of the agencys case managers have been uncomfortable with their loss of control (75). Despite that feeling, the case managers have been pleased with the flexibility they have in responding to these clients needs and with some of the positive outcomes they have seen. The agencys fee-for-service clients have been happy with the case management services they have purchased. The results of the Robert Wood Johnson Foundations market research, the interviews with family caregivers conducted for OTA in Pennsylvania, and Connecticut Community Cares experiences with fee-for-service case management suggest that different people want and need different kinds of help with defining their service needs and selecting, arranging,
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134 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias and monitoring services. An underlying theme, however, is that people perceive themselves as being in control of the linking process and that they want to retain that control. The American Nurses Association, the National Association of Social Workers, the National Council on the Aging, and other commentators state that the primary goals of case management include empowering people, increasing people sense of control over their own lives, and helping people attain their own objectives (22,48372,58 1,893). Achieving these goals is difficult in a complex, fragmented service environment in which resources are limited and the services people want are sometimes unavailable or too expensive--and the difficulty is probably compounded when a person is cognitively impaired and the persons caregiver is unsure of what he or she wants or is ambivalent about using services at all. The difficulty is probably further compounded when the case manager is responsible to an agency for a series of administrative procedures to authorize and account for the use of resources. If the objectives of a linking system include empowering people, increasing their sense of control, and helping them achieve their own objectives, several requirements must be met. First, there must be a clear recognition that these are objectives of the system. Second, there must be guidelines for implementing them, and third, there must be training for case managers to help them achieve the objectives. How Much Would Case Management Increase the Use of Services? The extent to which case management would increase the use of services probably depends in part on whether the case manager has funds and authority to purchase services for clients or just arranges services for them. The National Lang-Term Care Channeling Demonstration compared use of services by elderly people in three groups: 1. a basic case management group, in which a case manager had only limited funds to purchase services and primarily brokered available services for the clients; 2. a financial control group, in which a case manager had funds and authority to purchase services for the clients; and 3. a control group, in which the clients received no case management or services through the project (although some clients received case management and/or services from other sources); (147). Elderly people in the basic case management group, in which the case manager primarily brokered services, were using 11 percent more in-home services than the control group after 6 and 12 months and 6 percent more in-home services after 18 months (147). Elderly people in the financial control group, in which the case manager had funds and authority to purchase services, were using 22 percent more in-home services than the control group after 6 months, 18 percent more in-home services than the control group after 12 months, and 14 percent more after 18 months. Thus, basic case management without funds to purchase services increased service use by 6 to 11 percent over the use which would have otherwise occurred, while case management with funds and authority to purchase services increased service use twice that amount. The results of a recently completed respite service demonstration project conducted by the Philadelphia Geriatric Center (88,448) also show that case management with funds to purchase services increased service use, but overall use was still lower than one might have expected, given caregivers expressed need for respite services. The project made respite services available to family caregivers of Alzheimers patients through a case management process. The caregivers who volunteered for the project received an initial assessment and were randomly assigned to a control or experimental group. Caregivers in the control group were given a list of local service providers and were reassessed at the end of the study, a year later. Caregivers in the experimental group were offered respite services to be provided in their home, in an adult day center, and/or in a hospital or nursing home (88,448). A case manager was available to help the caregivers identify their needs, to develop a care plan, to assist in arranging respite or other services, and to provide counseling to help caregivers with problems that might interfere with their use of services. Interactions between the case managers and the caregivers in the experimental group varied. The caregivers were contacted at least every 2 months; in some cases, contact was much more frequent. As noted earlier in this chapter, only about half the caregivers in the experimental group in this study used any respite services over the course of the year
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Chapter 3--The Need for Outreach and Case Management .135 (88,448). Thirty-five percent used in-home respite; 2 percent used adult day care; 7 percent used overnight nursing home care, and 8 percent used more than one kind of respite care. Moreover, most of the caregivers who used respite care used very little of it. Even though the case managers encouraged the use of respite services, therefore, overall use of the services was still low. According to the researchers, some caregivers were so emotionally invested in their role as caregiver that they were unable to accept any services, even with extensive counseling and support. Other caregivers only slowly came to understand the concept of respite care and might have begun to use respite services if the demonstration project had continued beyond the l-year period. A comparison of the experimental and control groups at the end of the respite service demonstration project showed that the project intervention i.e., the case management, the offer of respite care, and the respite services that were usedhad no significant effect on caregivers attitudes, perception of burden, or self-reported physical or mental health (448). The project intervention did have a significant effect on the number of days that patients remained in the community (447). Dementia patients whose caregiver was in the control group were institutionalized or died an average of 22 days sooner than dementia patients whose caregiver was in the experimental group. Interestingly, this difference was not between caregivers who used respite services and those who did not. Rather, it was between caregivers who received the whole intervention case management, counseling, education, the offer of respite, and any respite services that were usedand caregivers who did not. The researchers suggest that the whole intervention, including the knowledge that respite services would be available if needed, that constituted a strain-reducing influence that fortified caregivers in the experimental group in their resolve to defer institutionalization as long as possible (447). CONCLUSION Some people with dementia and some caregivers have characteristics, feelings, or perceptions that make them reluctant to use services or unable to arrange services themselves. These individuals are unlikely to respond to public education programs and may be unwilling or unable to contact an information and referral source on their own. Some of them do not need services, but many undoubtedly do. These individuals often include some of the most isolated patients and objectively burdened caregivers. Outreach and case management programs are needed to connect these people to services. Although it is unclear how many people with dementia need outreach or case management, it is clear that outreach and case management are essential components of an effective system to link people with dementia to services. Outreach must be active and individualized to reach isolated people with dementia and isolated caregivers. Some initiatives that often are called outreach, such as lectures to community groups and publicity in various media, are effective in reaching some people with dementia and some caregivers but not those who are most isolated. Individualized approaches are needed for those persons. The gatekeeper model described in this chapter is most likely to be successful in reaching them. The five core functions of case management identified in table 3-lassessing a clients needs, developing a plan of care, arranging and coordinating services, monitoring and evaluating the services that are delivered, and reassessing the clients needs-are clearly relevant to many of the characteristics, feelings, and perceptions that keep some people with dementia and their caregivers from using needed services. Clearly, case managers need special knowledge and skills to work effectively with people with dementia. Moreover, some adjustments may be needed in case management procedures to accommodate some-and perhaps many families preference and ability to control the process of locating and arranging services themselves. Finally, it is important to note that neither outreach nor case management can compensate for the insufficient availability of services and funding for services. Outreach Programs can find people who need services, and case managers often can piece together services and funding for a client from the fragmented service system, but the services and funding frost must exist. Outreach and case management are essential components of a system to link people with dementia to services, but they are not a panacea for all the problems of long-term care.
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Chapter 4 Questions That Arise in Making Decisions About Services
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CONTENTS Page INTRODUCTION . . . . . . . . . . . . . . . DETERMINING THE DECISIO NMAKING CAPACITY OF INDIVIDUALS WITH DEMENTIA . . . . . . . . . . Criteria for Determining Decisionmaking Capacity . . . . . . . The Concept of Decision-Specific Decisionmaking Capacity . . . . . Who Should Determine Decisionmaking Capacity? . . . . . . . Methods of Enhancing Decisionmaking Capacity . . . . . . . . Implications for an Effective System To Link People With Dementia to Services MAKING SURROGATE DECISIONS ABOUT SERVICES FOR INDIVIDUALS WITH DEMENTIA . . . . . . . . . . Who Should Make Surrogate Decisions About Services? . . . . . . What Criteria Should Guide Surrogate Decisions About Services? . . . . Implications for a System To Link People With Dementia to Services . . . l39 141 141 144 144 146 147 148 148 152 155 156 CONCLUSION ....: . . . . .: . . . . . . . . . .
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Chapter 4 Questions That Arise in Making Decisions About Services INTRODUCTION Linking people with dementia to services involves many important decisions-what services are needed, who will provide them, who will pay for them, and, perhaps most importantly, whether the person will be cared for at home or in a nursing home or other residential care facility. Because of their cognitive impairments, people with dementia generally become less capable of making decisions for themselves. Their diminished decisionmaking capacity l raises difficult questions for individuals and agencies involved in linking them to services. This chapter considers two of these questions: l l How should the decisionmaking capacity of people with dementia-in this context, their capacity to make decisions about services-be determined? How should decisions about services be made for people with dementia who are not decisionally capable? In other words, who should be the surrogate decisionmaker and what criteria should guide the decisions? Questions about how to determine whether individuals are capable of making decisions and about how to make decisions for those individuals who are decisionally incapable have been analyzed and debated at length in contexts involving other populations, including mentally ill, unconscious, and rminally ill people, and other decisions, particute larly decisions about the use of life-sustaining medical treatments and about participation in research. So far, however, such questions have not received much attention in contexts involving people with dementia and everyday decisions about health care, long-term care, social, and other services that such people may need (93,327). At the policy level, questions about how to determin e demented individuals decisionmaking capacity and how to make decisions about services on behalf of those demented individuals who are not capable of making such decisions themselves are often obscured by overriding concerns about the lack of sufficient services and funding for services. 2 At the level of individual case managers and others who arrange services for people with dementia, the questions are often obscured by the practical difficulties of locating and arranging services in a complex service environment. They may also be obscured by pressures on case managers to complete service arrangements quickly (e.g., because the client is in an unsafe situation, the clients informal support system is overwhelmed, the case manager has many other clients, or the hospital wants the client discharged yesterday ). It is important to recognize that although questions about how to determine a demented persons decisionmaking capacity and how to make decisions on behalf of decisionally incapable demented clients are often obscured, such questions are inherent in the process of linking people with dementia to services. Whenever the linking process goes beyond public education and information and referral to include the actual arranging of services, these questions are unavoidable. 3 Every individual or agency that arranges services for people with dementia necessarily answers the questions in one way or another-either by following explicit procedures for determining decisionmaking capacity and making decisions on behalf of clients who are decisionally incapable or by making implicit judgments. If Congress mandated a system to link people with dementia to services, the agencies that constituted the system would confront the problems of determining g decisionmaking capacity and designating surrogate decisionmakers whenever they helped to select or arrange services for people with dementia. IA~ di~w~ la~r, ~ c~ptw distingllishes beW~ tie terms decisiomnaking capacity, decisionally capable, ~d d=isio~~ incapable on the one hand and the terms comw@cy, competent ~d incowtent> on the o~er. The terms COmWtenWS co~etm~ and incompetent are used only to refer a persons legal status. The terms decisionmakm g capacity, decisionally capable and deaslonally incapable are used to refer to a persons capacity to make decisions in a more general sense. These terms are unfamiliar to many people and their use sometimes results in c umbersome sentence constructions, but OTA believes that these terms are more accurate than other available terms that might be used to represent the concepts being discussed. OTA apologizes to readers who find the terms unfamiliar or their use contorted. TIhe lack of sufficient services and funding for services is a topic that was addressed in OTAs 1987 report losing a MilZion Mnak: Confronting the Tragedy of Alzheimers and Other Dementias (831). 3~~ n~ for a systa t. g. ~yond public edu~tion ad info~tiorl ~d ref~ in order to s-e certain typt% of dementia patients ~d their caregivers is discussed inch. 3.
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140 Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias Most agencies that link people with dementia to services have no explicit policies or procedures for determining their clients decisionmaking capacity or for making decisions about services on behalf of clients who are decisionally incapable. In the absence of explicit policies and procedures, case managers and others who arrange services in these agencies must act on their own judgments about whether their clients are capable of making decisions about services and about how such decisions should be made for clients who are not decisionally capable. Some of these case managers and others may not be aware of the implications of these judgments, and some of them may not even be conscious of making the judgments. Judgments about a persons decisionmaking capacity and about how decisions should be made for people who are decisionally incapable involve fundamental legal rights and complex legal and ethical issues, some of which are discussed in this chapter. If an agency, case manager, or other individual that arranges services for people with dementia is not aware of the legal rights and legal and ethical issues involved in decisionmaking, there is little likelihood that those rights and issues will be adequately considered when decisions about services are made. In the context of linking people with dementia to services, one major objective in determining g decisionmaking capacity is to ensure that people who are decisionally capable will be given the opportunity to make decisions about services themselves and that people who are not decisionally capable will be protected from decisions that may be harmful to them. The ultimate objective in designating a surrogate decisionmaker and establishing criteria to guide surrogate decisions is to ensure that the best possible decisions are made for people who are not decisionally capable. Establishing explicit agency policies and procedures for determinin g decisionmaking capacity and for making surrogate decisions would not guarantee the achievement of these objectives. Nevertheless, establishing explicit policies and procedures could help focus agencies and case managers attention on the important legal rights and legal and ethical issues at stake in decisionmaking and thereby increase the likelihood that those rights and issues would be considered when decisions about services are made. This chapter discusses certain concepts and distinctions that are important in thinking about how to determine peoples decisionmaking capacity and how to make decisions on behalf of people who are not capable of making decisions themselves. The chapter also discusses some approaches that agencies and individuals that arrange services for people with dementia might use to determine their clients decisionmaking capacity and to make decisions about services for clients who are decisionally incapable. Some of the concepts, distinctions, and approaches discussed here are derived from analysis and debate about other types of decisions (e.g., decisions about the use of life-sustaining medical treatments and participation in research) and about other client populations (e.g., mentally ill, unconscious, or terminally ill people), and they may or may not be directly applicable to decisions about services for people with dementia. Other concepts, distinctions, and approaches discussed here are derived from recently completed and ongoing research and demonstration projects that address the problems of decisionmaking for people with dementia more directly. 4 The chapter discusses many unresolved issues. For some of the issues, there is, as yet, no agreement about the correct theoretical resolution. For other issues, there is agreement about the correct theoretical resolution but little understanding about how to apply it in the context of linking people with dementia to services. If Congress mandated a national system to link people with dementia to services, it could require that the agencies that constitute the system have explicit policies and procedures for determining their clients decisionmaking capacity and for making decisions for people who are not capable making decisions themselves. The concepts, approaches, and issues discussed in this chapter are relevant to the content of such policies and procedures and the questions that would have to be answered in developing them. d~ese projects ~CIUde: 1) studies m&r the Personal Autonomy in Long-Term Care Initiative funded by the Retirement Rese=h Foudation (327); 2) a study of hospital discharge planning for elderly people with diminished decisio nmaking capacity, funded by the Florence V. Burden Foundation and the Retirement Research Foundation (181,241); and 3) a project funded by the Ittleson Foun&tion and the Retirement Research Foundation to train temporary treatment guardians and to refine and disseminate a values history questionnaire that allows individuals to document their preferences and values so that if surrogate decisionmaking becomes necessary in the future, it will reflect the individuals wishes (252,802).
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Chapter 4-Questions That Arise in Making Decisions About Services l 141 DETERMINING THE DECISIONMAKING CAPACITY OF INDIVIDUALS WITH DEMENTIA The extent to which individuals with dementia are capable of making decisions about services varies. Some people with dementia, especially in the early stages of their disease, are quite capable of making some or all decisions about services for themselves. Others, in the opinion of everyone who knows them, are incapable of making even simple decisions. Many people with dementia fall somewhere between these extremes. Under U.S. law, adults are presumed to be competent unless and until factual evidence that refutes the presumption of competency has been presented to a court and the court has declared the person incompetent (945). Adults who have not been adjudicated incompetent have a legal right to make decisions about their medical care, where and how they will live, and how they will manage their own affairs. The vast majority of people with dementia have not been adjudicated incompetent. A 1986 survey of nursing homes in New York State found, for example, that under 3 percent of the homes residents had been declared legally incompetent (609), even though at least 40 percent of the States nursing home residents have dementia (217). Since individuals with dementia who have not been adjudicated incompetent are presumed under U.S. law to be competent, they have a legal right to make their own decisions. Nevertheless, some people with dementia who have not been adjudicated incompetent are, in the opinion of virtually everyone who knows them, incapable of making important decisions about their lives. This chapter uses the terms competent, incompetent, and competency only to refer to a persons legal status. It uses the terms decisionally capable, decisionally incapable, and decisionmaking capacity to refer to a persons ability to make decision in a more general sense. People who make judgments about dementia patients decisionmaking capacity-physicians, other health care and social service professionals, hospital discharge planners, case managers, service providPhoto credit: Bill Adams Some individuals with dementia are quite capable of making decisions about services for themselves, especially in the early stages of this disease. Surrogate decisions should not be substituted for an individuals own decisions unless it is clear that the individual is incapable of deciding for herself or himself. ers, and others-often err by automatically assuming that any person with a diagnosis of a dementing disease is incapable of making decisions and by turning immediately to the persons family for a surrogate decisions Many commentators agree that this practice is wrong and that surrogate decisions should not be substituted for a persons own decisions unless it is clear that the person is decisionally incapable (4,27,93,139,210,301, 417,671,901,945). On the other hand, some people who make judgments about dementia patients decisionmaking capacity err in the opposite direction by assumin g that a person with dementia is decisionally capable when he or she is not. Many commentators also agree that this practice is wrong because it fails to protect the decisionally incapable person from potentially harmful decisions (93,1 19,176,183,288,671). Criteria for Determining Decisionmaking Capacity Legal scholars and others have distinguished three general types of criteria for determining individuals decisionmaking capacity: 5L&e~~e, ~nY of me sate @k forces and cofi~=~ tit ~ve s~di~ tie problem of dementia beg~~~ a s~tement that people with dementia gradually lose their decisionmakm g capacity, butthenjump immediately to adiscussionofmethods for surrogate decisio out any discussion of methods for determining individuals decisionmakm ~g, (9%531,713) leaving g capacity or supporting their ability to make decisions for themselves.
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142 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias l status criteria, outcome criteria, and fictional criteria (27,671). If one uses status criteria to determine a persons decisionmaking capacity, the determination is based on the persons status in a specific category such as diagnosis, consciousness, or age. If one uses outcome criteria to determine a persons decisionmaking capacity, the determination usually is based on the correctness or reasonableness of the persons decision as judged by other people. If one uses fictional criteria, the determination is based on some aspect of the individuals functioning or potential functioning in a decisionmaking situation (27,671). Some of the physicians, case managers, and others who make judgments about the decisionmaking capacity of people with dementia are probably not even conscious of making the judgments, and it is very unlikely that many of them consider whether their judgments are based on status, outcome, or functional criteria. Anecdotal evidence suggests, however, that many of these individuals rely more on status and outcome criteria than on functional criteria. Physicians, case managers, and others who automatically assume that any person with a diagnosis of a dementing disease is unable to make decisions are using a status criteriona diagnosis of a dementing disease. As noted earlier, the use of this criterion to judge a persons decisionmaking capacity is not appropriate, because people with dementing diseases vary greatly in their cognitive abilities, and many of them retain sufficient cognitive abilities to make decisions for themselves, especially in the early stages of their disease. Physicians, case managers, and others who use the correctness or reasonableness of an individuals decision to judge the individuals decisionmaking capacity are using outcome criteria. If a cognitively impaired persons decision conflicts with a recommendation or decision of the individuals physician, case manager, hospital discharge planner, or some other caregiver, the persons decision may be called unreasonable and automatically regarded as evidence that the person is decisionally incapable. If a cognitively impaired persons decision does not conflict with the recommendations or decisions of his or her caregivers, the issue of the persons decisionmaking capacity may not even arise. (386,901,947). Two different arguments are made about the appropriateness of using outcome criteria such as the correctness or reasonableness of a persons decision to judge the persons decisionmaking capacity. On the one hand, some argue, competent adults have a legal right to take risks and make foolish decisions so long as their decisions do not encroach on the rights of others or violate the law (41,93,181,539); people with cognitive impairments should not be deprived of that right. On the other hand, some argue, physicians and other health care and social service professionals have a legal and ethical obligation to protect vulnerable people from danger and neglect; if these professionals think that a cognitively impaired persons decision threatens the persons safety, they are obligated to question it (41,93,181). A middle ground that reconciles these two arguments, in theory at least, is the view that if a cognitively impaired person makes a decision that seems unreasonable to others, the decision should trigger a careful evaluation of the persons decisionmaking capacity but should not result in an automatic judgment that the person is decisionally incapable (945). Physicians, case managers, and others who use some aspect or aspects of an individuals functioning in a decisionmaking situation to judge the individuals decisionmaking capacity are using functional criteria. Two commentators discussing discharge pl anning for elderly people with diminished decisionmaking capacity have defined functional decisio nmaking capacity in terms of a persons ability to comprehend the possible consequences of a plan he or she proposes (181). Other commentators have identified four fictional criteria for deterrninin g a persons decisionmaking capacity. Those criteria are listed below in the order of increasing strictness: 1. making a choice; 2. evidencing an understanding of relevant information and issues; 3. rationally manipulating the relevant information; and 4. in addition to 2 and 3 above, appreciating the nature of the situation (29). The few courts that have considered criteria for determin. mg decisionmaking capacity have generally adopted functional criteria rather than status or
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Chapter 4--Questions That Arise in Making Decisions About Services 143 Photo credit: Rush-Presbyterian/St. Lukes Medical Center, Chicago, IL A person with dementia maybe capable of making some decisions but not others. outcome criteria (27). Most commentators also favor the use of functional criteria to determine a persons decisionmaking capacity, primarily because such criteria pertain directly to the persons actual or potential functioning in a decisio nmaking situation (27). Functional criteria for determining a persons decisionmaking capacity are more ambiguous than status or outcome criteria, however. For that reason, a person who uses functional criteria has to exercise more independent judgment than a person who uses status or outcome criteria and may therefore need more training to make these determinations. At least one observer has suggested that cognitive assessment tests, such as the Mini-Mental State Examination (218), could be used as an objective measure of decisionmaking capacity (613). That idea has intuitive appeal, but OTA is not aware of any research that compares peoples cognitive ability as measured by their scores on a cognitive assessment test and their decisionmaking capacity as measured by some other standard, and anecdotal evidence suggests that such scores and decisionmaking capacity may not be highly correlated. Moreover, in some cases, peoples scores on cogntive assessment tests are not even an accurate indicator of their cognitive abilities. Sometimes, the tests incorrectly identify people as cognitively impaired who are cognitively normal; this situation is particularly likely to occur when the tests are used for ethnic minority people and people with very little formal education (831,865). Although commentaries on criteria for determining peoples decisionmaking capacity favor the use of functional criteria over status or outcome criteria as a general principle, it is important to note that most of the discussion on this topic has occurred in the context of decisions about life-sustaining medical treatments and about participation in research.
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144 Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias Moreover, discussion has often focused on people other than those with dementia (e.g., mentally ill and terminally ill people). The implications of using functional rather than status or outcome criteria to determine dementia patients capacity to make everyday decisions about health care, long-term care, social, and other services have received very little attention. Thus, it is unclear whether there are any special considerations in the use of functional criteria for this purpose and whether there may be certain functional criteria that are especially appropriate for this population. The Concept of Decision-Specific Decisionmaking Capacity A concept that has emerged in the legal and ethical debate about determining g decisionmaking capacity is the concept of decision-specific capacity. That concept is that a persons capacity to make a decision may differ for each decision. A person may be capable of making a simple decision carrying little risk but not capable of making a more complex decision carrying significant risks (176,178,945). Furthermore, a person maybe [capable of making] a particular decision at a particular time, under certain circumstances, but [incapable of making] another decision, or even the same decision, under different conditions (93). The concept of decision-specific decisionmaking capacity is widely advocated and accepted (27,93, 177,671,672), but discussion about the application of the concept has occurred in the context of single decisions about the use of life-sustaining medical treatments or participation in research. So far, very little has been written about the application of this concept in the context of situations that call for making multiple interrelated decisions about a persons living arrangements and the use of various health care, long-term care, social, and other services over time. Applying the concept of decision-specific capacity in situations involving multiple interrelated decisions over time may be considerably more difficult than applying the concept in situations where a single decision is needed. As an example, consider the dilemma raised in the following instance. A cognitively impaired man who requires supervision and personal care decides that he wants to remain at home with homemaker assistance instead of entering a nursing home. The mans physician, the case manager, and others agree that the man is capable of making that decision, and so the case manager arranges for homemaker services. Subsequently, however, the man refuses to pay or repeatedly fires the homemakers who are sent to help him. What should be done in a case like this-when a cognitively impaired person refuses to implement his or her own decision? Several commentators have pointed out that some people who are capable of making a decision are not necessarily capable of implementing it (i.e., they have decisional autonomy but not executional autonomy), and that such people need assistance in implementing their decisions (139,179,384). The application of that principle is clear with respect to people who are physically unable to implement their decisions, but it is less clear in the case of a cognitively impaired person who refuses to implement his or her own decision. Does it make sense to conclude that such a person is decisionally capable with respect to one decision and decisionally incapable with respect to other decisions that are needed to implement that decision? Raising this dilemma is not intended to dispute the validity of the concept of decision-specific decisionmaking capacity. Rather, it is intended to illustrate the difficulty that a case manager or other arranger of services might encounter in seeking to apply the concept to decisions about services for people with dementia. Who Should Determine Decisionmaking Capacity? Many commentators believe that a persons decisionmaking capacity should be determined without court involvement whenever possible and that the courts should be called on as a last resort only if an irreconcilable disagreement about a persons decisionmaking capacity arises among those who are caring for the person (177,253,539,945). Such determinations are better made without court involvement, they say, in part because court proceedings tend to be expensive, time-consumin g, and emotionally stressful for everyone involved. In addition, many months may pass before a court hears a case and issues a decision, and applying the concept of decision-specific decisionmaking capacity would be virtually impossible if many decisions about a persons care had to be made over time, and a court hearing had to be held to determine the persons capacity to make each decision.
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Chapter 4-Questions That Arise in Making Decisions About Services l 145 If, as a general practice, determinations of peoples decisionmaking capacity are to be made without court involvement, some person or body other than the courts has to make them. Some hospitals and nursing homes have established explicit institutional policies that delineate procedures to be followed in making decisions about the use of life-sustaining medical treatments, and their policies often include procedures for determin ing patients decisionmaking capacity (475,833). In addition, some hospitals and nursing homes have an ethics comrnittee--a multidisciplinary group established to address ethical dilemmas that arise within the facility and advise staff about difficult treatment decisions. Hospital and nursing home ethics committees sometimes assist facility staff in determining whether patients are capable of making decisions about their medical care (833). Agencies that arrange services for people with dementia could establish explicit policies, not unlike the institutional policies just mentioned, that would delineate procedures to be followed when decisions about services are needed for clients of questionable decisionmaking capacity. The agency policies could specify procedures for determining g such individuals decisionmaking capacity, including instructions about who should be involved in making the determinations. Some agencies that arrange services for people with dementia might be able to adapt the model of a hospital or nursing home ethics committee for determining their clients decisionmaking capacity (179). OTA knows of one community mental health center in Spokane, Washington, that has established a multidisciplinary team consisting of a psychiatrist, a nurse, and a social worker to determine its clients decisionmaking capacity (689). 6 Other agencies could use a similar approach. In judging individuals legal competency, courts frequently rely on the opinions of psychiatrists and psychologists. Some of the agencies OTA studied that arrange services for people with dementia e.g., community mental health centershave psychiatrists and psychologists as employees or consultants. These agencies might assign a psychiatrist or psychologist the primary responsibility for determining their clients decisionmaking capacity. Agencies that arrange services for people with dementia also might assign case managers the primary responsibility for determining g their clients decisionmaking capacity. OTA has heard different opinions about the wisdom of this approach, and some peoples opinions depend on the educational background, experience, and training of the case managers who would be performin g the function. Citing the important legal rights and legal and ethical issues involved in judgments about an individuals decisionmaking capacity, some people argue that only those case managers who have received special trainin g in determining decisionmaking capacity--either in addition to or irrespective of their having a certain educational background and/or experience--are qualified to determine their clients decisionmaking capacity. Other people argue that case managers with certain types of educational background and experience (e.g., those with a masters degree in nursing or social work and some amount of experience) are qualified to determine their clients decisionmaking capacity. Still other people argue that case managers are not qualified to determine individuals decisionmaking capacity regardless of the case managers educational background, experience, and/or any special training they may have received. It is important to note in this context that in many and perhaps most agencies that arrange services for people with dementia, case managers are the ones who determine their clients decisionmaking capacity, even though there may be no explicit agency recognition that they are performing that function and some of the case managers may not aware that they are doing so. Some people might argue that the current situation is satisfactory, although OTA has not heard that opinion expressed (except with respect to case managers with certain educational background and/or experience). The educational background and experience of individuals who function as case managers in agencies that arrange services for people with dementia varies greatly, but to OTAs knowledge, the question of how education and experience affect case managers ability to determin e peoples decisionmaking capacity has not been systematically investigated. It is reasonable to believe, though, that whatever their background, case managers and others who arrange services for people with demen~e Elderly Services Program of the Spokane Community Mental Health Center is deseribed in box 8-C in ch. 8.
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146 Confused Minds, Burdened Families: Finding Help for People With Alzheirners & Other Dementias Photo credit: Eastern Area Agency on Aging, Brewer, ME In many agencies that arrange services for people with dementia case managers are the ones who determine their clients decisionmaking capacity, even though there may be no explicit agency recognition that they are performing that function. tia would benefit from trainin g in determining decisionmaking capacity. The form such training should take and who should provide it are unclear, however. A resource center established at the University of Minnesota in 1988 might be able to develop training materials about determining g decisionmaking capacity for case managers and others who arrange services for people with dementia. This center, the Long-Term Care Decisions Resource Center, was established by the Federal Administration on Aging to conduct research and to provide State units on aging and area agencies on aging (AAAs) with training and technical assistance related to decisionmaking in long-term care. The Minnesota center is addressing a variety of topics related to long-term care decisionmaking, including client assessment, care planning, and other case management functions. In relation to its work on these topics, the center might be able to develop tr aining materials about methods of determining decisionmaking capacity and about legal and ethical issues involved in judgments about an individuals decisionmaking capacity. Such materials could be used to train case managers in AAAs and then be disseminated to other agencies. Methods of Enhancing Decisionmaking Capacity Several commentators believe that physicians, other health care and social service professionals, hospital discharge planners, case managers, and others have an obligation to support and enhance the decisionmaking capacity of people with dementia (93,177,945). They also have an obligation to make the most of the variability in such individuals decisionmaking capacity to allow individuals to make decisions for themselves to the greatest extent possible (93,177,945). The decisionmaking capacity of a person with dementia is diminished first and foremost by cognitive deficits caused by the persons dementing disease. Since the cognitive abilities of a person with a dementing illness typically vary from day to day and even in the course of the same day, the persons decisionmaking capacity may be greater at some times than others. To allow the person to make his or her own decisions about services to the greatest extent possible, physicians and other health care and social service professionals must be available and willing to make the most of periods of relative lucidity (93,181). In addition to being affected by the persons dementing disease, the decisionmaking capacity of a person with a dementing disease may be diminished by a variety of other factors that are more or less susceptible to interventions by physicians or others who are caring for the person. Such factors include medications, coexisting illnesses, stress, and unfamiliar environments that exacerbate the persons cognitive deficits, as well as sensory impairments that interfere with the persons ability to receive information relevant to decisions (93,414,945). Other factors include language barriers that interfere with communication; the lack of information about possible living arrangements and services, the form in which information about services is presented, and the ways in which questions about services and living arrangements are framed (4,179,386,798). Eliminating or compensating for factors that adversely affect decisionmaking capacity is one way to enhance a persons decisionmaking capacity and support the persons autonomy. Unfortunately, the decisionmaking capacity of most individuals with dementia deteriorates over time. Another way to enhance the decisionmaking capacity and support the autonomy of such individuals, therefore, is by anticipating their mental deterioration and encouraging them to take advantage of legal arrangements that allow them to document their wishes or preferences with respect to certain types of decisions, so these wishes and preferences
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Chapter G-Questions That Arise in Making Decisions About Services l 147 can inform future decisions by surrogate decisionmakers. Such legal arrangements include the following: l l l trust agreements, which allow individuals to document their wishes for the management of their financial affairs in the event that they become decisionally incapable; living wills, which allow individuals to document their preferences about the use of lifesustaining medical treatments in the event that they become decisionally incapable; and durable powers of attorney, which allow individuals to designate someone to make health care and/or financial decisions for them (i.e., a surrogate decisionmaker) if the individual becomes decisionally incapable. Many commentators have noted the importance of these legal arrangements and have emphasized that physicians, other health care and social service professionals, service providers, hospital discharge planners, case managers, and others who work with people with dementia and their families have a responsibility to encourage the patients and their families to have the necessary documents executed while the person is still decisionally capable (38,137,180,253,539,644,945). If agencies that arrange services for people with dementia had explicit policies and procedures for determing their clients decisionmaking capacity, they could incorporate available methods for enhancing decisionmaking capacity into their procedures. Implementing methods for enhancing decisionmaking capacity may be difficult, however, because the methods are often time-consumin g; they do not fit easily into the time constraints of the typical hospital discharge pl anning process or situations in which services must be arranged quickly because the patient and family are in crisis by the time they come to the attention of the case manager (4,139,179,417,901). The reason for enhancing individuals decisionmaking capacity is to allow people to make decisions for themselves to the greatest extent that they are able. Efforts to preserve the autonomy of individuals with dementia have to be balanced, however, with a recognition that such individuals are often decisionally incapable and therefore may need protection from decisions that may be harmful to them (119, 183,288). Designating someone to make decisions about services for a person who is decisionally incapable is not depriving that person of autonomy. In fact, allowing such a person to make decisions for himself or herself may be more correctly construed as abandonment than as supporting autonomy (41,417,547). A full discussion of the difficult legal and ethical considerations involved in supporting the autonomy of a person with questionable decisionmaking capacity v. protecting the person from potentially harmful decisions is beyond the scope of this report. 7 The main point here is that those seeking to support autonomy must balance their efforts with the recognition of realistic limits on autonomy caused by the persons dementing disease (41,178,546). Striking a balance between supporting a decisionally capable individuals autonomy and protecting a decisionally incapable person from potentially harmful decisions often requires subtle judgments on the part of whoever is determining g the persons decisionmaking capacity-an observation that again suggests the need for training of the individuals who have to make these judgments. Implications for an Effective System To Link People With Dementia to Services As the preceding discussion points out, physicians, other health care and social service professionals, hospital discharge planners, case managers, and others who are involved in arranging services for people with dementia sometimes simply assume that anyone with a diagnosis of a dementing disease is decisionally incapable, without carefully evaluating the persons decisionmaking capacity. Furthermore, most agencies that arrange services for people with dementia do not have explicit policies and procedures for determinin g their clients decisionmaking capacity. Judgments about clients decisionmaking capacity in these agencies are frequently made by case managers and others who may or may not be knowledgeable about methods for determining g decisionmaking capacity or about the complex legal and ethical issues involved in such judgments. (Some of these individuals may not even be aware that they are making the determin ations.) Wor further discussion of these issues and considerations as they relate to decisions about serviees for people with dementi% the reader is mfemed to the summer 1987 issue of Generations, Coercive Placement of the Elderly: Protection or Choice? and the June 1988 supplement to The Gerontologist, Autonomy in I.xmg-Term Care (241,251).
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148 Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias If Congress mandated a national system to link people with dementia to services, Congress could require the agencies that were designated to constitute the system to have explicit policies and procedures for determining g clients decisionmaking capacity. The questions that would have to be addressed by agencies in establishing such policies and procedures include the following: l l l What criteria should be used to determine decisionmaking capacity ? Who should be involved in determinin g clients decisionmaking capacity? What procedures should be used to enhance clients decisionmaking capacity while at the same time protecting decisionally incapable people from potentially harmful decisions? None of these questions is easily answered. Some of the possible answers discussed in the preceding sections were developed in discussion and debate about determining decisionmaking capacity for other client populations and other types of decisions. More research and analysis is needed about procedures for determining decisionmaking capacity in people with dementia and in the context of decisions about the health care, long-term care, social, and other services that may be needed for them. Trainin g about determin ing decisionmaking capacity could benefit case managers and others who arrange services for people with dementia. Such training is especially needed for case managers or other individuals who have primary responsibility for determin ing their clients decisionmaking capacity. MAKING SURROGATE DECISIONS ABOUT SERVICES FOR INDIVIDUALS WITH DEMENTIA If an individual with dementia is decisionally incapable, decisions about services must be made for the individual. It is important to reemphasize, however, that making decisions for such a person is the second step. The process of making decisions about services should begin with a presumption that the individual is decisionally capable. Only after that presumption is refuted should other people make decisions for the person (946). When decisions are made on behalf of an individual who is decisionally incapable, someone or some group of people is chosen as the surrogate decisionmaker, whether that choice is made explicitly or implicitly. Furthermore, the surrogate decisions are based on some criteria, whether those criteria are explicit or implicit. When decisions about services are made for an individual with dementia, the choice of a surrogate decisionmaker and the criteria for surrogate decisions are probably more often implicit than explicit. Nevertheless, who is chosen as the surrogate decisionmaker and what criteria are used for surrogate decisions can have a profound impact on the life of the individual with dementia. Who Should Make Surrogate Decisions About Services? As mentioned earlier, people who are decisionally capable can designate someone to make decisions on their behalf through the legal mechanism of a durable power of attorney. In some States, people who are decisionally capable also can designate someone to make decisions for them through another legal mechanism-a living will. Very few people have executed either a durable power of attorney or a living will. Moreover, the types of decisions that can be made with a durable power of attorney vary from State to State, and it is often unclear whether or to what extent a durable power of attorney authorizes the designated surrogate to make decisions about the kinds of health care, long-term care, social, and other services that may be needed for a person with dementia. State living will laws that allow the designation of a surrogate decisionmaker generally only authorize surrogate decisions about the use of life-sustainin g medical treatments and, in some States, only for terminally ill individuals. If a decision about services is needed for a decisionally incapable person with dementia and the person has not formally designated a surrogate decisionmaker, physicians, other health care and social service professionals, service providers, hospital discharge planners, case managers, and others usually turn to the persons family (if the person has one). Available evidence, including a 1982 Harris poll and a more recent study, indicates that most people want a family member to make decisions for them if they are not able to make the decisions themselves. The 1982 Harris poll found that 5 7 percent of the 1,251 people interviewed nationwide said they wanted a family member to make important medical decisions for them if they were not capable of doing so themselves; about one-third wanted their doctor to make such decisions (476). In another, more recent study, 90 percent of the 4 0
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Chapter 4--Questions That Arise in Making Decisions About Services 149 elderly persons interviewed said they wanted a family member or family members to make health care decisions for them if they were not capable of doing so themselves; the remain ing 10 percent wanted their doctor, a lawyer, or a close friend to make the decisions (322). The 1982 Harris poll and the more recent study both focused on health care decisions, and although the majority of respondents in both studies said they wanted family members to make surrogate decisions for them, the next largest number of respondents said they wanted their physician to make the decisions (322,476). Physicians are probably perceived by most people as more qualified to make decisions about health care than about some of the other kinds of services that may be needed for individuals with dementia. No data are available, but it is likely that if the studies had focused on decisions about social and other nonmedical services, the preference for family members as surrogate decisionmakers would have been even stronger. Despite the fact that most people prefer to have family members make decisions for them if they become decisionally incapable, many States provide no legal authority for family members to make the decisions unless the family member is designated as a surrogate decisionmaker by a durable power of attorney or a living will, as just described (36,531,945). As of April 1987, only 15 States had family consent laws (i.e., statutes that authorize family members to make decisions for relatives who are decisionally incapable), although courts in 5 additional States had ruled that family members could make such decisions (539,540). These family consent laws and court rulings generally only apply to certain types of patients and certain types of decisions. The laws and court rulings in some States authorize families to make decisions for a decisionally incapable relative only if a physician has certified that the person is terminally ill (540). Many existing family consent laws and court rulings only address decisions about life-sust aining medical treatments, and it is not clear whether they apply to decisions about the other kinds of health care, long-term care, social, and other services that maybe needed for people with dementia. In States that do not have family consent laws, the legal rights and responsibilities of family members and others in making decisions for decisionally Photo credit:Maria P. Cordero-Aranda Most people want family members to make decisions for them if they are not capable of making the decisions themselves. incapable people are unclear. In these States and in many of the States that already have family consent laws, legislation is needed to clearly delineate the extent of, and limitations on, the decisionmaking authority that is granted to family members and others, including any limitations on the types of decisions that the law authorizes them to make. The designation of surrogate decisionmakers, including family members, for decisionally incapable people with dementia will continue even in the absence of such legislation, but State statutes that clearly define the rights and responsibilities of family members and others in making decisions for decisionally incapable people and also delineate the types of decisions that a designated surrogate is and is not authorized to make would create a firm legal basis for determining who should make decisions about services for decisionally incapable people with dementia. Several problems complicate the practice of using family members as surrogate decisionmakers. One is that a persons relatives may disagree about which one(s) should make the necessary decisions. Such disagreements may arise between the demented persons adult children, between adult children and the spouse, or between siblings and other relatives who have been involved in caring for the person (85,137,186,514,670,936). Some States family consent laws address this problem by specifying the order in which certain family members (e.g., the spouse and the adult children) are authorized to make surrogate decisions (539). OTA has not analyzed the pros and cons of this approach.
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150 Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias Some of the other problems that complicate the practice of using family members as surrogate decisionmakers probably would persist even if all States had clear, comprehensive statutes on designating surrogate decisionmakers. One such problem, as discussed in chapter 3, is that some family members are not comfortable making decisions for a relative with dementia (307,487,533,669,936). Despite their concern about their relatives welfare and knowledge about his or her wishes, some family members are reluctant to take control. Such reluctance is evident in following statement of a 74-yearold woman whose husband had dementia: My husband refuses to believe that there is anything wrong with him. Sometimes he does seem to be better than others, so how do I tell him that he needs help? (669) A study of 15 spouses of people with dementia found that wives were much more likely than husbands to have difficulty making decisions for their demented spouses (533). The researcher concluded: The males assumption of authority over their wives was. a natural extension of their authoritative role in the family. For the wives, assuming an authority position over another adult, especially a man who had probably been the authority figure in the marriage, was one of the hardest aspects of the caregiving role (533). Another problem that complicates the practice of using family members as surrogate decisionmakers is that some families are not appropriate surrogate decisionmakers. The practice of turning to a persons family for surrogate decisions assumes that family members are more likely than other people to know the patients values and preferences and to be concerned about his or her interests. That assumption is valid in many cases, and perhaps most, but certainly not in all (93,945). Furthermore, even family members who know a patients values and preferences and are concerned about the patients interests, do not always make decisions on the basis of those values, preferences, and interests. It is sometimes assumed that the only thing a case manager has to do with respect to designating a surrogate decisionmaker for a person with dementia who has a family is to note the name and telephone number of one or more family members in the persons medical record or care plan. Sometimes, however, problems arise-e.g., the persons relatives disagree about who should be the surrogate decisionmaker, or the obvious surrogate is either reluctant to make decisions for the person or unconcerned about the persons well-being-that make designating a surrogate a more difficult task. Such problems suggest a need for agency policies and procedures for designating surrogate decisionmakers (written to comply with existing State laws if there are relevant laws) and training for case managers and others who are involved in selecting surrogate decisionmakers. Designating a surrogate decisionmaker for a person with dementia who has no family is likely to be even more difficult than doing so for a person who has a family. One unresolved issue is the appropriate role of nonfamily caregivers in making decisions about services for decisionally incapable people with dementia. That issue was brought to OTAs attention by the findings of an exploratory study conducted for OTA in Los Angeles and San Diego Counties, California in 1988 and 1989 (866). One component of the study was interviews with 88 ethnic minority caregivers of ethnic minority people with dementia. The 88 caregivers included 35 black, 25 Hispanic, 18 Japanese, and 10 American Indian caregivers. 8 The study found that 17 percent of the caregivers were friends or neighbors of the person they were caring for, i.e., not family members, and 34 percent of the black caregivers were not family members. OTAS contractors, the individuals who interviewed the black caregivers, and others have pointed out that in many black communities, long-time friends and neighbors are frequently regarded and spoken about as if they were family members (247,866). When it comes to making decisions about services for a decisionally incapable person, however, these fictive kin are in the same or perhaps an even more uncertain position legally than family caregivers in States that do not have family consent laws. Although a nonfamily caregiver may know more than anyone else about the wishes and values of the person he or she is caring forand therefore be the best surrogate decisionmaker for that person there is no legal authority for the nonfamily caregiver to make the necessary decisions. 8AII of tie components of tie study conducted for OIll in California are described in app. A. A complete report on the study is avfible from tie National Technical Information Service in Springfield, VA.
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Chapter 4--Questions That Arise in Making Decisions About Services 151 The study conducted for OTA in Los Angeles and San Diego Counties found that the percentage of nonfamily caregivers was higher among the black caregivers than among the Hispanic, Japanese, and American Indian caregivers (866). These findings cannot be generalized with any certainty because of the small size of the samples and the way the samples were recruited. OTAs contractors believe, however, that there is probably a higher percentage of nonfamily caregivers of people with dementia in the black population than in the Hispanic, Japanese, or American Indian populations in the areas studied (865). On the other hand, anecdotal evidence suggests and OTAs contractors believe that the phenomenon of nonfamily caregivers of people with dementia exists in all population groups, including the majority white population. It is likely, therefore, that agencies, case managers, and others that arrange services for people with dementia routinely encounter dementia patients who have nonfamily caregivers. Although the appropriate role of these caregivers in decisions about services for the patients is unclear, it is clear that unless the caregivers are involved in the decisionmaking process in some way, decisions about services for the patients they are caring for will be made without the benefit of their knowledge of the patients wishes and values. For individuals with dementia who have no family member or other person to make decisions about services for them and for individuals whose family or nonfamily caregiver is not an appropriate surrogate for any reason, one option would seem to be guardianship--in which a court appoints someone to manage money and make decisions for an individual who has been declared legally incompetent (the ward). 9 Many commentators regard guardianship as a last resort, however, because it usually entails the drastic deprivation of rights for the ward; because, as discussed earlier, court proceedings are often expensive, time-consumin g, and emotionally stressful for everyone involved (177,253,361,945); and because guardianship does not necessarily result in the designation of a reliable surrogate decisionmaker. A fulll discussion of the many problems with guardianship in this country is beyond the scope of this report. It is sufficient to note some of the findings of a study conducted by the Associated Press in all 50 States in 1986 and 1987, in which judges, guardians, and others were interviewed and the court files of more than 2,200 individuals who had been declared legally incompetent and assigned a guardian were reviewed (1 1). That study found that in one-fourth of the cases, no hearing was held to determine whether the person was incompetent. In many cases, once guardianship was established, the court lost track of the paperwork, the guardian, and the ward. Although there are reporting and accounting requirements for court-appointed guardians in all 50 States, the required annual or periodic accountings of the wards money were missing or incomplete in half the files. Only 16 percent of the files had any kind of report on the status of the ward, and 13 percent of the files were empty except for the original decision that the individual was incompetent and the granting of guardianship powers. One judge interviewed by the Associated Press said: I dont know where the wards are, whos caring for them, or what theyre doing. I have no support staff; I have no welfare workers; I have no aides; I have no assistants; and I have no money (11). In 1983, Montefiore Hospital in New York added a lawyer to its multidisciplinary geriatric team to resolve legal problems that prevented effective hospital discharge planning for or appropriate placement of elderly patients with diminished cognitive abilities (181). For some patients, the lawyer initiated legal proceedings in order to have a guardian appointed to manage the patients money so that needed services could be purchased. After several protracted and generally unsatisfactory experiences with the guardianship process, the lawyer concluded that guardianship was an inadequate method of designating a surrogate decisionmaker for the purpose of hospital discharge planning (179). Another lawyer connected to the project described the guardianship process as a nonexistent alternative with respect to hospital discharge planning (946). The guardians appointed by the court generally were untrained and unsupervised. Moreover, in at least two cases in which a guardian was appointed after a lengthy court process, the person appointed did not even contact the patient or patients caregivers for months after the court decision (181). gsome Stites we tie tem ~~n and guardianship, other States use the terms conservator and conservatorShip, and some states use both terms to refer to thecourt-appointedperson and the mechanism(s) by which thatpersonis appointed to manage the assets and/ormake other decisions on behalf of people who are determined to be decisionally incapable (539). In the following discussio~ the terms guardian and guardianship are intended to include both sets of terms.
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152 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias The American Bar Association has recommended reforms in the guardianship process, and the Center for Social Gerontology in Ann Arbor, Michigan, has developed standards for individuals and agencies that function as guardians for decisionally incapable adults (738). Various other organizations have developed alternatives to guardianship for decisionally incapable people who have no family member or other surrogate decisionmaker. The University of New Mexicos Institute of Public Law, for example, recently trained 20 volunteers (social workers, lawyers, nurses, and others) to act as temporary treatment guardians to make decisions about medical treatment for hospitalized elderly people who are decisionally incapable and have no other surrogate decisionmaker (802). The volunteers underwent a 16-hour training program that involved didactic presentations, case discussions, and role playing. In the course of the l-year project, the volunteers assisted a total of 50 elderly people. As it turned out, the temporary treatment guardians discovered that some of the elderly people they were called in to assist were decisionally capable after all and that other clients had family members or close friends who could be located with a little sleuthing and were able to make decisions for the person. Since 1985, New York State has had a program whereby volunteer surrogate decisionmaking committees make decisions about medical treatments for mentally ill and mentally retarded people who have no other surrogate decisionmaker (777). The committees are composed of at least 12 members who meet in 4-member panels to consider treatment decisions. Each 4-member panel must include a health care professional, a former patient or relative of a patient, a lawyer, and an advocate for the mentally disabled. For each mentally ill or retarded individual, the 4-member panel determines, frost, whether the person is decisionally capable and, second, whether there is a family member or a legally appointed guardian who can make the necessary treatment decision. If the answers to both questions are no, the panel makes the treatment decision. In the first year of the program, surrogate decisions about treatment were made in 192 cases. The decisions were made in an average of 14 days from the time the committees received the application-much less time than is required for the typical guardianship proceeding. Some observers feared that it would be difficult to recruit professionals to serve on the committees, but recruiting volunteers has not been a problem except in some rural areas of the State. Both the University of New Mexico program and the New York State program provide only a onetime or temporary surrogate decisionmaker and address only decisions about medical treatment. Other guardianship diversion programs provide money management and counseling services for decisionally incapable people, sometimes on a long-term basis (900). All of these programs exemplify methods other than guardianship by which surrogate decisionmakers can be provided for people who are decisionally incapable and have no family member or other surrogate to made decisions for them. To make surrogate decisions for these people, agencies that arrange services for people with dementia could create their own surrogate decisionmaking committee, recruit and train volunteer surrogate decisionmakers, or affiliate themselves with a program that provides surrogate decisionmakers (if such a program is available in the agencys area). What Criteria Should Guide Surrogate Decisions About Services? Court rulings and legal analysis of decisions about the use of life-sustaining medical treatments made on behalf of people who are decisionally incapable have identified two standards to guide surrogate decisionmaking: l the best interest standard, and the substituted judgment standard. The best interest standard requires the surrogate to make decisions from the perspective of a hypothetical reasonable person, using objective, societally shared criteria (945). The substituted judgment standard requires the surrogate to make decisions from the perspective of the patient, using the patients personal values and preferences (945). The best interest and substituted judgment standards, respectively, represent two fundamental values in surrogate decisionmaking-patient autonomy and patient well-being (671). The tension between those two values is as central to surrogate decisions about services for people with dementia as it is to surrogate decisions about the use of life-sustaining medical treatments for people who are permanently unconscious or terminally ill. In the context of surrogate decisions about services for people with
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Chapter 4--Questions That Arise in Making Decisions About Services 153 dementia, patient well-being as a value is manifested in decisions by physicians, service providers, case managers, or an individuals friends or family that the individual should receive certain services or live in a certain place for his or her own good, regardless of the individuals wishes. Patient autonomy as a value is manifested in surrogate decisions that an individual with dementia should be allowed to refuse services and live as he or she chooses, even if there is risk associated with those choices. The latter perspective also is reflected in efforts to enhance an individuals decisionmaking capacity, as discussed earlier, and to support the residual autonomy of the individual (177). Some people generally favor surrogate decisions based on patient well-being, whereas others generally favor surrogate decisions based on patient autonomy. Clearly, however, neither value by itself is sufficient for every decision or for every patient. The process of making surrogate decisions about services for people with dementia probably should retain a tension between the two values, but retaining that tension means that in many cases the right decision will not be obvious. When case managers, hospital discharge planners, and others who arrange services for people with dementia make or influence decisions about services, those decisions are likely to reflect their preference for one value or the other, either in general or in the particular situation. Yet some of those individuals may not be aware of the values involved in such decisions or the implications for the patient of decisions that favor one value over the other. The relationship between patient well-being and autonomy has been discussed and debated extensively with respect to decisions for all kinds of people who are decisionally incapable, and the resulting ideas and principles seem both relevant to and adequate for thinking about criteria for surrogate decisions pertaining to the use of services for people with dementia. In contrast, another issue-how the needs, preferences, and best interests of the patient and of the family should be weighedhas received less attention in discussion and debate about decisions for all kinds of people who are decisionally incapable, and the resulting ideas and principles are less helpful in thinking about decisions about services for people with dementia. Photo credit: Bill Adams Agencies that arrange services for people with dementia could create a surrogate decisionmaking committee to make decisions about services for people with dementia who are not capable of making the decisions themselves and have no one else to make the decisions for them. The members of the advisory panel for this OTA study talked at some length about the question of the relative weight that should be given to the needs, preferences, and best interests of the family v. the patient in decisions about services for persons with dementia. No consensus was reached, but several important points emerged from the discussion. First, it is clear that when family members are necessary participants in a plan of care because the person with dementia lives with them or for any other reason, their needs and preferences must be considered in decisions about services because their interests are at stake in the decisions and because they may not cooperate with the plan of care otherwise. Second, it is sometimes very difficult in practice to separate the needs, preferences, and best interests of the person with dementia and of the family. Beyond those two points, the OTA advisory panel divided into two groups. Some panelists tended to regard the person with dementia and family as a unit and to consider that unit the appropriate client of the case manager. Those panelists generally were not especially concerned about the difficulty of separating the needs, preferences, and best interests of the patient and those of the family; and they seemed to regard positively the idea of using the needs, preferences, and best interests of the family as criteria for decisions about services. Other panelists tended to regard the person with dementia and family as separate; and they were worried about the potential for conflicts of interest if the needs, preferences, and best interests of the family, rather than those of the patient, were used as criteria for decisions about services.
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154 Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias Both groups of OTA advisory panel members were critical of case managers who represent themselves as advocates for a person with dementia but in fact have their primary allegiance to a relative of the person, a trust officer, or someone else who is paying for their services. This is one of the situations that commentators refer to with the phrase, Whos the client? The allegiance of the case manager to the impaired person v. a family member, trust officer, or someone else is in part a question of professional ethics that should be addressed in case management standards and is addressed, to some degree, in the case management standards of the National Association of Social Workers (572) and the National Council on the Aging (581). A more complex issue is the relationship between the long-term needs, preferences, and best interests of a person with dementia and the needs, preferences, and best interests of his or her primary caregiver, who is usually a family member. Arguably, the long-term best interests of many people with dementia is to remain with a family caregiver even if the care they receive from that person is much less than ideal. It maybe in the demented persons best interest to remain with the family caregiver because the alternative to being cared for by the family caregiver is objectively worse, is worse in the view of the patient, or both; because the person knows the family caregiver; or because families often provide what one commentator has called substituted memory of shared happenings -i.e., a knowledge of the patient past (which a formal service provider generally does not have) that is reassuring to the patient and may to some degree compensate for his or her memory loss (177). On the other hand, there is clearly some point at which the long-term best interests of a patient with dementia are not served by remainin g with the family caregiver. Different observers undoubtedly would disagree about when that point has been reached for an individual patient. If by basing decisions about services on the needs and preferences of the caregiver, one can support the caregiver and prolong the time he or she is willing and able to continue caring for the patient, doing so would seem to be in the patients long-term best interest, even if it required disregarding the patients spoken choice or short-term best interest. spoken choice here refers to a clearly articulated preference of the person which, because of the persons cognitive impairment, may or may not reflect his or her real needs, preferences, or best interests (18 1). Consider, for example, a situation in which a person with dementia is placed in a nursing home for 2 weeks against his or her wishes, so that the primary caregiver will be temporarily relieved of caregiving tasks. Even if the placement results in short-term worsening of the impaired persons cognitive and emotional status, some people would say that it is in that persons best interest because it serves the persons presumed long-term interests. Additional situations also might be imagined in which disregarding the spoken choice and short-term best interest of a decisionally incapable person could be regarded as being in that persons best interest. The point of this discussion is not to resolve the question of the relative weight that should be given to the needs, preferences, and best interests of the person with dementia v. the family in decisions about services but simply to emphasize the complexity of the issue. Three additional considerations further complicate the matter. First, some people with dementia live with and are cared for by a person who is almost as impaired as they are and who might be legitimately regarded as a client. When there are, in effect, two clients in the home, how should their needs, preferences, and best interests be weighed in decisions about services? Second, some, and perhaps many caregivers can be pressured into doing more than they should do for their own good. Are there limits that could or should be applied to what a caregiver is expected, asked, or even allowed to do? IAN@, as a patients condition deteriorates, is there a point at which the interests and well-being of the caregiver should take precedence over the interests of the patient? There are no simple answers to any of these questions. Case managers and others who arrange services for people with dementia regularly cofront situations in which decisions must be made that could favor the needs, preferences, and best interests of the family over those of the patient, or vice versa. They may be more or less aware of the issues involved in those decisions and the implications for the patient and family of decisions that favor the needs, preferences, or best interests of one over the other. The question of the relative weight that should be given to patients v. families needs, preferences,
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Chapter 4--Questions That Arise in Making Decisions About Services l 155 and best interests in decisions about services requires further analysis. In the meantime, it is unclear what guidelines might be given to case managers and others who arrange services for people with dementia and thus regularly confront situations in which a decision must be made. One approach would be to create within agencies various forums (e.g., multidisciplinary team meetings, formal case conferences, and supervisory conferences) in which those situations could be discussed and deliberated. Implications for a System To Link People With Dementia to Services The preceding discussion points out that choosing surrogate decisionmakers for decisionally incapable people with dementia and determining g what criteria should guide surrogate decisions about services for them involve complex legal and ethical issues and raise many unanswered questions. State legislation that clearly defined the rights and responsibilities of family members and others in making decisions for decisionally incapable people and delineated the types of decisions that designated surrogates are and are not authorized to make would eliminate many of the existing problems in designating surrogate decisionmakers. Even without such legislation, however, agencies, case managers, and others that arrange services for people with dementia have to turn to someone for surrogate decisions for decisionally incapable clients. Furthermore, it is likely that regardless of the specificity of State legislation, the designation of appropriate surrogate decisionmakers for people with dementia will entail difficult judgments in some and perhaps many cases because of the idiosyncrasies of each patients situation. Likewise, although it is generally agreed that patient autonomy and patient well-being are the values that should guide surrogate decisions, the two values often imply different decisions in the same situation, and neither value is appropriate for every situation. Applying the two values in decisions about the use of services for an individual client therefore entails difficult judgments in many cases. Balancing the needs, preferences, and interests of an individual with dementia and the needs, preferences, and interests of the individuals family also requires difficult judgments. The need for these difficult judgments suggests that agencies that arrange services for people with dementia should have explicit policies and procedures for designating surrogate decisionmakers and making decisions about services for people with dementia who have no surrogate decisionmaker. It is reasonable to believe that case managers and others who are involved in arranging services for people with dementia would benefit from trainin g about the issues involved in surrogate decisionmaking. To the extent that case managers and others who arrange services for people with dementia actually designate surrogate decisionmakers and/or make decisions about services for their decisionally incapable clients, their need for such trainin g is increased. If Congress mandated a national system to link people with dementia to services, Congress could require the agencies that were designated to constitute the system to have explicit policies and procedures for designating surrogate decisionmakers (written to comply with existing State laws if there are relevant laws) and for making surrogate decisions in instances where the agency had to make surrogate decisions for any reason. To formulate such policies and procedures, the agencies that constitute the linking system would have to address many of the unresolved questions discussed in this chapter, including questions about what to do when a decisionally incapable clients relatives disagree about which one of them should make the necessary decisions, how nonfamily caregivers should be involved in decisions about services, and when formal guardianship is needed for a client. To support agencies efforts to develop policies and procedures for designating surrogate decisionmakers and for making decisions for decisionally incapable clients who have no surrogate, more research and analysis pertaining to many of the questions discussed in the preceding sections is needed. Especially problematic is the question of how to balance the needs, preferences, and interests of an individual with dementia and the needs, preferences, and interests of the individuals family or other informal caregiver. Perhaps it would be useful for government, private agencies that arrange services for people with dementia, and professional associations that represent social workers, nurses, and other professionals who function as case managers to jointly sponsor forums for further discussion of this and related issues. 89-150 90 6
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156 Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias CONCLUSION Questions about how to determine the decisionmaking capacity of people with dementia and how to make surrogate decisions about services for people who lack the capacity to make such decisions themselves are inherent in the process of arranging services for people with dementia. The way such questions are answered involves fundamental legal rights of the patient and raises complex legal and ethical issues. Those rights and issues are at stake regardless of whether the individuals who make or participate in the decisions are aware of them. In many agencies that arrange services for people with dementia, questions about the methods used to evaluate clients decisionmaking capacity and to make surrogate decisions about services for clients who cannot make such decisions themselves are obscured by other problems and concerns and by the severe constraints on the time within which decisions about services must be made. In such agencies, concerns about clients legal rights, and about the legal and ethical issues involved in the way decisions about services are made for people with diminished decisionmaking capacity seem to be second-level concerns to be considered when other problems have been solved. This chapter has suggested that if Congress mandated a national system to link people with dementia to services, Congress could require that any agency that is part of the system have explicit policies that delineate the procedures to be followed when decisions about services are needed for clients with diminished decisionmaking capacity. Policies that specify procedures for determining g a clients decisionmaking capacity and/or assign responsibility for determining g a clients decisionmaking capacity to a person or group of people could help increase the likelihood that clients rights and the legal and ethical issues involved in decisionmaking are adequately considered. The chapter has discussed some concepts, distinctions, and approaches that may be useful in developing such agency policies and procedures and in training case managers and others who are involved in arranging services for people with dementia. As noted repeatedly, many of the concepts, distinctions, and approaches that have been discussed were derived from analysis and debate about the use of life-sustaining medical treatments or participation in research, not the kinds of decisions that are the topic of this OTA report. Furthermore, some of the concepts, distinctions, and approaches discussed in the chapter apply more to decisionmaking by and for mentally ill and terminally ill people than to decisionmaking by and for people with dementia. To address the difficult questions and issues that are likely to arise in situations involving decisions about the many kinds of services to which an effective linking system could link people with dementia, further research, discussion, analysis, and debate is needed.
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Chapter 5 Concerns About the Quality and Appropriateness of Services
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CONTENTS Page INTRODUCTION . . . . . . . . . . . . . . . 159 FAMILY CAREGIVERS CONCERNS . . . . . . . . . . 160 CONCEPTUAL AND PRACTICAL DIFFICULTIES IN EVALUATING SERVICES . . . . . . . . . . . . 161 Defining and Measuring the Quality of Services for People With Dementia . . 163 What Role Should Patients and Families Play in Defining Quality and Specifying Goals and Methods of Care? . . . . . . . . . 165 LIMITATIONS OF POSSIBLE SOURCES OF INFORMATION . . . . 167 Relatives, Friends, and Acquaintances Who Have Used a Service . . . . 168 Physicians, Nurses, Social Workers, and Other Health Care and Social Service Professionals . . . . . . . . l . . . 168 Professional and Provider Associations . . . . . . . . . . 170 The Alzheimers Association . . . . . . . . . . . . 170 Caregiver Support Groups . . . . . . . . . . . . . 171 Dementia Experts . . . . . . . . . . . . . . 171 Agencies That Provide Telephone Information and Referrals . . . . . 175 Hospital Discharge Planners and Case Managers . . . . . . . . 176 State Long-Term Care Ombudsmen . . . . . . . . . . . 178 Aging Network Agencies . . . . . . . . . . . . . 179 Other State and Local Government Agencies . . . . . . . . . 179 Government Regulatory Agencies . . . . . . . . . . . 179 Voluntary Accreditation Programs . . . . . . . . . . . 182 Internal Quality Assurance Programs . . . . . . . . . . 182 Other Possible Sources of Information . . . . . . . . . . 182 summary . . . . . . . . . . . . . . . . . 183 LIMITATIONS ON CAREGIVERS ABILITY TO OBTAIN INFORMATION . 183 APPROACHES FOR DEVELOPING CRITERIA TO EVALUATE THE QUALITY OF SERVICES . . . . . . . . . . . 186 What Criteria Might Be Used? . . . . . . . . . . . . 187 Who Should Develop the Criteria and Who Could Use Them? . . . . . 189 AGENCY PROCEDURES FOR MONITORING & CONTROLLING THE QUALITY OF SERVICES . . . . . . . . . . . 190 Procedures for Involving Patients and Families in Monitoring and Controlling the Quality of Services . . . . . . . . . . . . . 194 What Role Can Case Managers Play in Monitoring and Controlling Quality? CONCLUSION . 196 . . . . . . . . . . . . . . . . 197 Box Page 5-A. Special Care Units for People With Dementia . . . . . . . 163 Figures Page 5-1. List of Questions for Evaluating an Adult Day Care Center, Distributed by the Cleveland Alzheimers Association Chapter 4 ., *, .,....... 174 5-2. List of Questions for Families Trying To Select a Nursing Home . . . 184 5-3. The Ohio PASSPORT Programs Standards for Homemaker Services . . 192 5-4. Questions Used To Evaluate Client Satisfaction in Tulsa, Oklahoma . . . 193 5-5. Checklist Given to Clients in Ohios PASSPORT Program . . . . . 195
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Chapter 5 Concerns About the Quality and Appropriateness of Services INTRODUCTION The quality of all kinds of health care, long-term care, social, and other services that may be needed for people with dementia varies greatly from one agency and individual service provider to another. 1 Numerous reports document the poor quality of care provided by some nursing homes (563,759,813,835), board and care facilities (66,166,775,816), and to a lesser extent home care agencies (821,305,852). At the same time, these reports indicate that other nursing homes, board and care facilities, and home care agencies provide excellent care. Differences in quality are typical not only of these types of services, but of all kinds of services that may be needed for people with dementia. In addition to differences in quality, there are differences in services provided by various agencies and individuals that make the services more or less consistent with the needs of people with dementia. In communities that have more than one nursing home, home care agency, adult day center, physician, lawyer, or any other type of agency or individual service provider, the services offered by one agency or individual may be much more appropriate for people with dementia than the services offered by another agency or individual. All people who need health care, long-term care, social, or other services are at risk of poor quality or inappropriate care, but people with dementia are particularly vulnerable. Because of their cognitive deficits, they may be unable to identify or articulate their care needs, to evaluate the services they receive, to remember and report instances of poor care, or to be believed. Realizing that people with dementia are so vulnerable, families and other informal caregivers are often extremely concerned about the quality and appropriateness of services they may use for these people. This chapter focuses on the potential role a federally mandated linking system might play with respect to the quality and appropriateness of services to which it connects people with dementia. The quality of a service is defined here as the extent to which the service increases the probability of desired outcomes and reduces the probability of undesired outcomes, given the constraints of existing knowledge. 2 The appropriateness of a service denotes the aspects of a service that make it consistent with the needs of people with dementia. In theory, a federally mandated linking system could take any of several different approaches with respect to the quality and appropriateness of services to which it connects people with dementia. l l l l l The linking system could not concern itself with the quality and appropriateness of the services; it could provide no information about the quality and appropriateness of services and rely on families and others who are concerned about quality and appropriateness to obtain for themselves any information they need to evaluate the services. The linking system could refer families and others to specific sources of information about the quality and appropriateness of services. The linking system could provide families and others with information about the quality and appropriateness of the services. The linking system could refer people to or arrange for them only services that met specified standards of quality and appropriateness. (In the case of a linking system that also pays for services, this alternative would mean that the system would only pay for services that met the specified standards.) If the linking system provides services, it could assure the quality and appropriateness of those services directly. In practice, three problems would make it difficult to implement these approaches or would limit their potential effectiveness. First, several of the approaches assume that there are accepted criteria for evaluating the quality and appropriateness of services for people with dementia. In fact, as discussed in this chapter, there is currently no consensus about criteria for evaluating the quality and appropriateness of services for people with dementia. lsee ~ble 1.2 in c~pter 1 for a list of services that may be needed for people with dementi. % definition of quality was also used by OTA in its 1988 assessment The Quality of Medical Care: Znformutionfor Cmsummr (832).
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160 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias Second, several of the approaches assume that accurate information about the quality and appropriateness of services for people with dementia is available from various sources. Although one hears many recommendations about possible sources of such information, the analysis in this chapter indicates that accurate information about quality and appropriateness is not consistently available from any of the recommended sources. Third, several of the approaches assume that families and other informal caregivers are able to gather information about the quality and appropriateness of services from one or more sources or to use lists of questions and criteria to evaluate services themselves-in short, that families and others are able to function as informed consumers in evaluating the quality and appropriateness of services. Although some families and other informal caregivers of people with dementia are certainly able to function as informed consumers in this context, others are not for a variety of reasons described in the chapter. Probably the most important step that could be taken to enable a federally mandated linking system to connect people with dementia to the best available services would be the development of criteria to evaluate services. Certainly, if a federally mandated linking system were going to refer people to or arrange for them only services that met certain standards, the standards would have to be based on accepted criteria. If such criteria were available, some families could use the criteria to evaluate services themselves. Other agencies and organizations could also use the criteria to evaluate services, thus making accurate information about the quality and appropriateness of services available from these sources. The development of criteria for evaluating the quality and appropriateness of services for people with dementia is not the function of a linking system, but ways in which the necessary criteria might be developed and some criteria that might be considered are discussed later in this chapter. The chapter focuses primarily on quality assessment (i.e., the measurement and evaluation of quality) rather than on quality assurance (i.e., procedures and activities to safeguard and improve quality by assessing quality and taking action to correct any problems found). The focus on quality assessment reflects the perspective of families and others who are trying to identify good services for a person with dementia, but who usually are not involved in assuring the quality and appropriateness of services. Some agencies that link people to services also provide services and therefore can assure (i.e., assess and correct problems in) the quality of those services directly. Other agencies that link people to services contract for some of the services, and some of those agencies have procedures for monitoring and controlling the quality of contracted services. The last section of this chapter describes some of those agencies procedures for monitoring and controlling quality, including procedures that involve patients and families in monitoring and controlling the quality of the services they receive. Quality of care and methods of assessing and assuring quality are currently a concern of Congress and the topic of many publicly and privately funded research projects. Interest in quality of care has increased because of widespread concern that costcont ainment measures introduced in the past few years may be reducing quality of care (111,831,925). Attention has focused primarily on the quality of hospital and nursing home care, but the focus is expanding now to include in-home and other noninstitutional services (206,216,471,658). In considering the potential role of a federally mandated linking system with respect to the quality and appropriateness of services to which it links people with dementia, this chapter is discussing all types of services that may be needed for these people. FAMILY CAREGIVERS CONCERNS Numerous studies and anecdotal reports emphasize the strong commitment of many family caregivers to their relative with dementia. With this commitment comes a deep concern about the quality and appropriateness of any services provided for the person. According to one Office of Technology Assessment (OTA) contractor who studied 500 family caregivers of people with dementia: What was most impressive from (the) caregiver studies was the emotional investment that caregivers have in their responsibilities. This emotional tone may be reflected in rage at unsympathetic agencies or professionals, fear, grief, advocacy, resignation, humor, but most of all love for and commitment to an impaired older person. With such a strong personal investment, these family caregivers were predictably critical consumers of services and programs in their behalf (291).
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Chapter S-Concerns About the Quality and Appropriateness of Services 161 A 1986 survey of family caregivers conducted for OTA found that family caregivers were indeed critical consumers who were concerned about the quality and appropriateness of services available to their relatives and other people with dementia (926). Other studies report similar findings (145,412). Many of the State task forces and committees that have studied the problem of Alzheimers disease and related disorders also note families grave concerns about the quality and appropriateness of services (99,143,246,360,396,408,531,541,598,621,870,920). Some family caregivers are fearful about using services for a person with dementia because they believe that the quality of care provided will be poor and that the service providers will not know how to take care of a person with dementia (88,145,291, 396,599). Some family caregivers feel-often realistically-that no one will take as good care of their demented relative as they do. Some fear that their demented relatives inability to express needs or report inadequate care will cause service providers to neglect the person. Others fear that their demented relatives troublesome behavior or psychiatric symptoms will cause that person to be physically or verbally abused. Some families are apprehensive about using in-home services for a relative with dementia because they are afraid that the workers will be poorly trained and unreliable. Families who have had problems with one service provider may be afraid to try another one. Some health care and social service professionals, case managers, government planners, policy analysts, and others seem to regard concerns about the quality of services as secondary to the problem of insufficient availability of services. A number of the people whom OTA asked about evaluating the quality and appropriateness of services for people with dementia responded that there is often no choice about services. In many localities, they said, families are lucky if there are any services available-let alone services that are appropriate for a person with dementia and of high quality. The concern about insufficient availability of services is legitimate. The important point to be made here, however, is that even when services are available, there are some situations in which families concerns about the quality and appropriateness of the services are the determining g factor in their decisions about whether or not to use the services. Some families may choose not to use an available service because they believe that the service is inappropriate for the patient or of poor quality. Likewise, some families who have been reluctant to accept help may decide to use a service if they believe it is appropriate for the patient and of good quality. OTA does not know how often either of the situations just mentioned occur or whether the frequency of their occurrence varies for different types of services. That there are situations, however, in which considerations of quality and appropriateness are the determinin g factor in families decisions about service use suggests that although some health care and social service professionals, case managers, government planners, policy analysts, and others may regard concerns about the quality and appropriateness of services as secondary to the problem of insufficient availability of services, the families of people with dementia may not always agree. In the view of at least some families in some situations, services that are available but of poor quality or inappropriate for the patient may just as well not exist. 3 CONCEPTUAL AND PRACTICAL DIFFICULTIES IN EVALUATING SERVICES Many people think they know quality when they see it, but they have difficulty defining its components precisely. This predicament is described in a frequently cited passage from Zen and the Art of Motorcycle Maintenance: Quality you know what it is, yet you dont know what it is. But thats self-contradictory. But some things are better than others, that is, they have more quality. But when you try to say what quality is apart from the things that have it, it all goes poofl Theres nothing to talk about. But if you cant say what Quality is, how do you know what it is, or how do you know it even exists? (663). Sclmly, considerations of quality and appropfiteness do not always play a critical role in family caregivers decisions about tie U* of avtible services for an individual with dementia. Some caregivers are so severely burdened that they may have to use any available service, regardless of its quality and appropriateness. Other families, even severely burdened ones, may choose not to use an available sesvice even though the service is of high Wty ad Wpropfite. For a disc~sion of some of tie reasons why families and other caregivers of people with dementia may be reluctant to use available services, see ch. 3.
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162 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias Photo credit: Peter Carroll Because of their strong commitment to their relative with dementia families are often deeply concerned about the quality and appropriateness of any services they may use for the person. Peoples judgments about quality are often impressionistic. With respect to services for people with dementia, someone might observe something about an agency and decide the agencys services are good or not good without thinking about how he or she reached that conclusion. Likewise, someone might hear from a friend, the family physician, or another source that a certain provider is good or not good and accept that judgment as true without questioning its basis. Impressionistic judgments about quality may be correct, but quality is not necessarily obvious or easy to judge, and people sometimes differ in their impressions about the quality of a particular service. For judgments about quality to be more than impressionistic, they must be based on criteria that are derived from specified goals or desired outcomes of care and from methods of care that are known to achieve those goals or outcomes (174,385,737,832, 925). At present, however, there is no consensus about the goals or desired outcomes of care for people with dementia, and the efficacy of many methods of care has not been proven (482,510,675). The lack of a consensus about the goals of some services for people with dementia and the lack of proven methods to achieve those goals is not surprising. Although a few agencies and individuals have focused on providing appropriate services for people with dementia for many years, most health care and social service professionals and other providers have only begun to think about the service needs of people with dementia in the past few years, if at all. Moreover, many treatment methods and service interventions that are used routinely for people with other diseases and conditions have not been evaluated rigorously and are simply assumed to be effective (31,832). Services for people with dementia are not unique in this respect. A major factor that complicates the development of valid criteria to evaluate the quality of services for people with dementia is the current uncertainty about what distinguishes appropriate services for these individuals from appropriate services for people with other diseases and conditions. 4 Man y service providers who work with people who have dementia believe that such people have special service needs. The difficulty arises in determining exactly what is or should be different about service goals and methods of care for this patient population. Over the past decade, as awareness of Alzheimers disease and other diseases that cause dementia has increased, nursing homes, board and care facilities, adult day care centers, and home care agencies have developed some services specifically for people with dementia. Anecdotal evidence indicates that these special services vary considerably. To a great degree, this variation reflects the lack of agreement about goals and methods of care for people with dementia. Box 5-A discusses the variation among special nursing home units for people with dementia, often referred to as special care units, and points out the difficulty families and others may have in evaluating a special care unit and in determining g, for example, whether a given special care unit will provide more appropriate care than a regular nursing home unit for an individual with dementia. Knowledge about what constitutes appropriate care for people with dementia is constantly evolving, and, in fact, special care units and other specialized services for people with dementia provide ideal A~e vazidi~ of cfitefi to ev~uate quali~ refers to the extent to which the criteria measure what they PWPOrt to mwure (832).
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Chapter 5-Concerns About the Quality and Appropriateness of Services l 163 BOX 5-A" Special Care Units for People With Dementia Over the past decade, some nursing homes have established special care units for people with dementia. One might assume that, by definition, these units would provide appropriate care for people with dementia. Many special care units do provide appropriate care, but anecdotal evidence suggests that some special care units do not provide appropriate care (144,317,321,404,425,482,83 1). It is said that some nursing homes use the words special care as a marketing tool and actually provide no special services for people with dementia. It is also said that some nursing homes with special care units are misinformed about what is appropriate care for people with dementia. One study of special care units for people with dementia found that the units differed greatly in their goals and methods of care (624). According to the researchers: These differences are of such significance that they appear to place special units in direct opposition to each other. Nonetheless, without exception, their proponents have hailed the success of the units (624). It is easy to understand why families and others who are trying to locate a nursing home for a person with dementia could be confused about special care units. They need a way to evaluate special care units and to compare the units with nursing home units that do not claim to provide special care. Otherwise, some families may unwittingly select a special care unit that provides inferior care or is inconveniently located, when a nondementia-specific nursing home is nearby and provides as good or better care. In this context, the director of a regional Alzheimers center has told OTA that she knows families who feel guilty about not having placed their relative with dementia in a nursing home with a special care unit, even though the nursing home they chose is nearer to their home and provides excellent care, whereas the nursing home with the special care unit is too far from their home to allow them to visit their relative frequently (55). Determinin g whether a given special care unit provides appropriate care for people with dementia would require an answer to the question, What is appropriate care for people with dementia? Although there is no consensus about the answer yet, two recently published documents may be helpful to families and others who are trying to evaluate special cam units. One is an Alzheimers Association handbook for caregivers on selecting a special a unit (486). The other is a report on best practices in special care units produced by the American Association of Homes for the Aging (60). These two d ocuments and other publications about special care units provide insight into the components of appropriate nursing home care for people with dementia. Some components of care mentioned in these publications are specific to people with dementia (e.g., the need for staff training in the usual symptoms of dementia and in effective responses to behavioral problems that occur often in this patient population). Other components are not specific to people with dementia and would benefit people with other diseases and conditions as well (e.g., adequate staff-to-patient ratios, avoidance of overmedication, and individualization of care). Greater understanding of what distinguishes appropriate nursing home care for people with dementia v. people with other diseases and conditions is needed to develop valid criteria to evaluate special care units. SOURCE: Office of Technology Assessment, 1990. settings for research on alternate methods of care. could be used to develop criteria for evaluating the Nevertheless, the development of criteria to assess quality cannot await final, indisputable evidence about effective methods of care or a consensus about the goals of care for these people. As is true of criteria to evaluate the quality of treatment methods and services for people with other diseases and conditions, criteria to evaluate the quality of services for people with dementia must be developed on the basis of the best available information from research and provider experience, leaving open the option to change the criteria as new knowledge develops. The following section presents some of the ideas and issues involved in defining and measuring quality. It provides a conceptual framework that quality of services for people with dementia. Th e subsequent section discusses the potential role of patients and families in defining quality and specifying goals and methods of care. Defining and Measuring the Quality of Services for People With Dementia Quality has been defined and its components identified to a greater extent for hospital care, acute medical care, and nursing home care than for home care or social services. It is generally agreed, however, that quality is multidimensional for all these types of services and for all kinds of people who use the services (173,385,83 1,832). The quality
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164 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias of services for people with chronic physical or cognitive impairments has been defined within the dimensions of the persons physical and mental health, functional ability, safety, emotional and social well-being, autonomy, and quality of life (385,563,831). Other dimensions in which quality might be defined are caregivers well-being and the financial security of the person and his or her family. To evaluate the quality of a service in other than an impressionistic reamer, it is necessary to identify goals or desired outcomes of care within each of those dimensions and to identify methods of care that lead to the specified goals or outcomes. The criteria that are used to measure quality must be derived from the specified goals and methods (174,385,737,832,925). Specifying Goals of Care Patients, families, service providers, and others have different goals in the care of people with dementia. The differences reflect their varying backgrounds, values, experiences, and knowledge, their current responsibilities, and their perceptions of the patients condition. Some people emphasize the importance of maintaining the patients physical health and safety. Others emphasize autonomy, freedom from fear, or reduced anxiety and agitation. Achieving the best possible quality of life for the patient is probably the overriding goal in the view of many families and some service providers, but the meaning of quality of life in this context is highly idiosyncratic (735). Different goals imply different methods of care and different criteria to evaluate quality. Sometimes legitimate goals of care conflict (385,735). For example, a person with dementia may enjoy walking unattended, valuing control and autonomy in this one area of her life, yet be unsteady on her feet and prone to falls. To ensure her physical safety, her caregivers could prevent her from walking unattended by physically restraining her in a chair, but this decision would conflict with the goal of maintaining her autonomy (831). Service providers and others often have several goals in caring for a person with dementia. When those goals imply different methods of care in a given situation, priorities must be set, either implicitly or explicitly, in order to determin e what good care is in that situation (385). A list of goals in which priorities are not clear is not sufficient to resolve questions about appropriate methods of care in a given situation; nor is such a list sufficient to develop meaningful criteria to evaluate quality. Identifying Effective Methods of Care Effective methods of care must be identified in the context of agreed-on goals. In the past few years, many books and articles have been published describing what the author or authors believe are effective methods of care for people with dementia. The goals of these methods of care are sometimes explicit, but often they are not. Moreover, few of the recommended methods have been subjected to rigorous testing (932). Thus, belief in their effectiveness rests primarily on anecdotal evidence. Research to evaluate the effectiveness of alternate methods of care for people with dementia is essential, both to improve services for these people and to develop valid criteria to measure quality. Developing Criteria To Measure Quality Criteria for evaluating quality generally pertain to the structure, process, or outcomes of care. Structural criteria pertain to the resources available for care (e.g., the number and qualifications of staff, physical plant, and financial resources). Process criteria pertain to the activities involved in care (e.g., care pl anning, medication procedures, and procedures for handling difficult patient behaviors). Outcome criteria pertain to aspects of the patients condition that are attributable to the process of care (e.g., functional ability, participation in activities, and patient satisfaction) (172). Many commentators use structural, process, and/ or outcome criteria to express their answers to the question, What are good services for people with dementia? Sometimes, these criteria are presented in the context of goals and methods of care, but often they are not. Families and others may latch onto a single criterion or Criteria relevant to only one aspect of care and assume that any service that meets those criteria is good. Thus, for example, some families might believe that a specified physical design ensures that a nursing home will provide highquality care. Although physical design is an important component of quality, it does not guarantee good care (486). The structure, process, and outcomes of care are related. Structural criteria are indicators of quality only insofar as the factors they reflect influence the process and outcome of care. Process criteria are
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Chapter 5--Concerns About the Quality and Appropriateness of Services l 165 indicators of quality only to the extent that the factors they reflect influence outcome, and outcomes are an indicator of quality only if they are attributable to the structure and process of care. It is widely agreed that, by itself, no single structural, process, or outcome indicator is an adequate measure of quality and that all three types of indicators are needed for a valid assessment (173,392,470,755, 832,925). Information about structure, process, and outcomes may be more or less difficult for families and others to obtain and more or less valuable to them. Information about structural characteristics of a given agency or service provider--e.g., the training and experience of the staff-may be relatively easy to obtain. The exclusive reliance on structural criteria to evaluate quality has been criticized, though, because structural characteristics indicate only the capacity of the agency or provider, not the services that are actually given (173,734). Accurate information about the process of care-i.e., the activities involved in care-maybe difficult for families and other outsiders to obtain, in part because they may not have an opportunity to observe the process of care directly before they make a decision to use the service. Survey procedures for government regulation of nursing homes and other agencies and for voluntary accreditation programs include process criteria and may produce findings that are useful for families and others who are trying to evaluate the quality of services for a person with dementia. Some processes that are selected for observation or regulation for these purposes are not linked or are only indirectly linked to the goals or desired outcomes of services (563,831). Thus, they may not be valid indicators of quality. A later section of the chapter discusses the availability of findings from regulatory and accreditation programs and their potential value for people who are trying to evaluate services. Recognition of the limitations of structural and process criteria and concern about the impact of cost cent ainment on the quality of many types of services have spurred new interest in outcome criteria (392,470,925). Accurate information about the outcomes of services provided by different agencies and individuals might be valuable to families and others who are trying to select the best service provider. For most of the types of services that maybe needed for people with dementia, outcome measures are only beg inning to be used. Thus, information about patient outcomes is not generally available. Moreover, information about patient outcomes, like information about structural and process indicators, may be difficult for families and others to interpret correctly. The use of outcome criteria to measure quality of care assumes a direct link between the process and outcomes of care, but that link is seldom simple or clear. Obviously, outcomes that are not attributable to the process of care should not be used to assess its quality (174,311,471). Many factors other than the process of care can affect patient outcome. These include the severity of the persons condition, the course of his or her disease(s), and the ability and willingness of the patient and family to cooperate with the process of care. Because these factors affect outcome independently of any service, high-quality care does not always produce good outcomes (392,755). Likewise, good outcomes may occur even if the quality of care is poor. Lastly, the use of outcome criteria to assess quality requires a comparison between expected outcomes and achieved outcomes. At present, very little is known about the course of many diseases that cause dementia, and people with dementia vary greatly in the progression of their symptoms. 5 As a result, it is often difficult to judge whether observed changes in a patients condition over time are the result of services the patient received or an inevitable consequence of his or her underlying disease. As more is learned about the normal course of diseases that cause dementia, it will become easier to identify valid outcome criteria to evaluate the quality of services. What Role Should Patients and Families Play in Defining Quality and Specifying Goals and Methods of Care? Historically, what constitutes good care has been defined by the providers of care (471,831,832). Goals, methods of care, and criteria for evaluating quality have been established by health care and social service professionals and other service providers and reflect their point of view. Some commentators argue that patients should play a greater 5W topic w= &SCUSSed at greater length in ch. 1.
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166 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias role in defining quality (130,737). Opinions on this issue vary and may depend on the kinds of patients and services that are being considered. For many people, the need for medical care and other health-related services is episodic and distinct from their daily lives, and the services they receive are intended to cure specific illnesses or solve other health-related problems. For people with dementia and other chronic debilitating conditions for which medical cures and complete solutions frequently are not possible, health-related and social services may be needed over a prolonged period and may become interwoven with the life of the patient and patients family (if there is one). Services provided in a patients home often involve intimate details of the patients life (386). At the extreme, in a nursing home, the care and the life of a patient may almost merge (120,385). In such situations, the quality of care and the quality of the patients life may be barely separable-and enhancing the quality of the patients life may become the most appropriate goal of services. Peoples views about quality of life differ, however. If enhancing the patients quality of life is the Primary goal of care, some commentators suggest, then patients values and preferences should be reflected in the definition of quality of care (392). Many commentators go further, suggesting that patients values and preferences should be reflected in the defitition of quality of care even if quality of life is not the primary goal of services (174,471,768). In fact, some commentators would probably consider the responsiveness of a service provider to patients values and preferences itself to be an important indicator of the quality of care. Patients values and preferences can be reflected in the defitition of quality of care in a number of ways. They can be taken into account in establishing the goals of care, in setting priorities among the goals, or in selecting among alternative methods of care (74). Criteria for evaluating quality can also be chosen to reflect patients values and preferences (470). One outcome indicator that measures quality in relation to the patients values and preferences is patient satisfaction. The importance given to other outcome criteria can be adjusted to reflect patients values and preferences (130). If a person is severely cognitively impaired or unable to communicate, ascertaining g that persons values and preferences may be difficult or even impossible. In some cases, the best way of ascertaining the persons values and preferences is to consult his or her family and friends about what the person would have considered good care. Some commentators would probably want to limit the role of a demented persons family in defining good care to representing the persons values and preferences. Other observers might argue that the values and preferences of a demented persons family are relevant to dete rmining what constitutes good care. 6 An underlying assumption of this OTA study is the importance of supporting family caregivers. In some cases, supporting family caregivers means giving them the information they need to evaluate different care options (919). Supporting family caregivers also may mean giving them a greater role in defining quality and specifying goals and methods of care. Several approaches for expanding families role in monitoring and controlling the quality of services provided for their relative with dementia are discussed later in this chapter. Apart from consulting a persons family and fiends, another way of ascertaining the values and preferences of a person with dementia is to use a values history. A values history is a document that expresses a persons wishes, values, and preferences with respect to his or her care. The Institute of Public Law at the University of New Mexico has developed a values history document for elderly people as part of its National Values History Project (252). The document is currently being tested in hospitals, nursing homes, home care agencies, and other sites. Recently, the Institute of Public Law completed a project in which volunteer temporary treatment guardians successfully used values histories to ascertain the wishes and preferences of hospitalized elderly people who were too cognitively impaired to make decisions about their own care and had no relative or friend to make the decisions for them (802). Although the values history document focuses on medical treatment decisions, it does include questions about a persons attitudes about independence, self sufficiency, and control and about his or her living situation, finances, and relationships with relatives and friends GSome of the ~mes that arise in balancing the values and preferences of a demented person and the persons family are discussed at greater length inch. 4.
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Chapter 5-Concerns About the Quality and Appropriateness of Services l 167 who might be involved in decisions about the persons care. LIMITATIONS OF POSSIBLE SOURCES OF INFORMATION Given the complexity of the issues involved in evaluating the quality and appropriateness of services for people with dementia, just discussed, it would certainly be easiest for a federally mandated linking system not to concern itself with the quality and appropriateness of services to which it connects people with dementia and instead to rely on families and other informal caregivers to obtain for themselves the information they need to evaluate services. Many books, pamphlets, and articles that offer advice to families and other informal caregivers about how to obtain services for a person with dementia suggest that caregivers are responsible for selecting good services. The publications point out that identifying good services takes time and that caregivers may have to make many calls to find someone who can help them identify good services. Many of these publications recommend that caregivers of people with dementia start looking for services and visiting facilities before they need them (15,133,319,517,767). The publications suggest that information about the quality and appropriateness of serviceman which caregivers could base their selection of services-may be available from one or more of the following sources: relatives, friends, and acquaintances who have used a service; physicians, nurses, social workers, and other health care and social service professionals; professional and provider associations (e.g., the State or local medical society, or nurses, hospital, or nursing home associations); the Alzheimers Association; caregiver support groups; dementia experts agencies that provide telephone information and referrals; hospital discharge planners and case managers; State long-term care ombudsmen; l l l l l l aging network agencies (e.g., the State office on aging, area agency on aging (AAA), or a senior center); other State and local government agencies (e.g., offices of the State departments of health, mental health, human services, social services, or public welfare); government regulatory agencies; voluntary accreditation programs; internal quality assurance programs; and other possible sources of information (15,38, 133,464,527,767). 7 OTAs review in this section considers each of the potential information sources listed above in terms of two questions: l l whether information about the quality and appropriateness of services for people with dementia is likely to be available from the source, and if so, whether the information is likely to be accurate and/or helpful to families and others who are trying to locate good services for a person with dementia. Many people whom OTA asked about how families and others can obtain information about the quality and appropriateness of services for people with dementia said that families and other informal caregivers should not be expected to obtain the information themselves, and that such an expectation places too great a burden on many families. Whether expecting families and other informal caregivers to obtain information about the quality and appropriateness of services places too great a burden on them depends partly on how difficult it is to obtain the information and partly on characteristics of the family or other caregiver and the circumstances in which they are trying to locate and arrange services. For some families and other informal caregivers, the approach to obtaining information about quality and appropriateness that is recommended in most advice books and pamphlets--contacting a variety of people and agencies, asking questions, and visiting potential service providers-may work reasonably well. It is easy to imagine numerous reasons why this approach would not work well for many other families and informal caregivers, however, and these reasons are discussed ?It is not always clear whether the publications that recommend some of these sources are suggesting them as sources of information about what services are available or about what services are good. Readen of these publications probably assume, however, that at least some of the recommended sources of information will be able to provide information about quality and appropriateness.
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168 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias in the section of this chapter that considers limitations on caregivers abilities to obtain information about quality and appropriateness. This section focuses only on the availability and accuracy of information about quality and appropriateness from specific sources. The information about quality and appropriateness that families and other informal caregivers need to make informed decisions about services should also guide decisions about services for people with dementia who have no informal caregiver. It is unclear, however, who would use the information and what would happen to people with dementia for whom no acceptable services could be found. These questions are discussed later in this chapter. The reader should bear in mind that the conceptual and practical difficulties in defining and evaluating quality that were discussed in the previous section of this chapter are applicable to any information about quality that may be provided by the sources discussed here. In the following discussion, those difficulties are assumed to exist and are not repeated for each source. Relatives, Friends, and Acquaintances Who Have Used a Service Relatives, fiends, or acquaintances who have used a service are a possible source of information about its quality. They have first-hand experience with the provider, and to the extent that their needs are or were similar to those of the patient for whom services are being sought, their judgments about quality may be accurate and helpful. The story of Mrs. D in chapter 1 includes an instance in which advice about the quality of a service provider that was offered by a chance acquaintance proved helpful. One of Mrs. Ds sons who called the local AAA happened to talk to a secretary there whose mother had Alzheimers disease. The secretary had used a local adult day program for her mother and recommended it highly. Mrs. Ds sons visited the center and agreed with her assessment. Although the advice of a chance acquaintance proved helpful in Mrs. Ds case, there are several drawbacks to relying on relatives, friends, or acquaintances for judgments about the quality of services. One is that relatives, friends, and acquaintances may not know anyone who has used a provider of the type that is needed. Another is that the judgments of friends and acquaintances may reflect values and preferences of one family or patient that are not shared by another family or patient (767). A patients condition and care needs and specific aspects of the patients caregiving situation differ from one patient and family to the next, so that what is good for one patient and family may not be equally good for another patient and family. Another drawback to relying on judgments about the quality of services that are made by relatives, fiends, and acquaintances is that such judgments may be based on observations of a single aspect of an agencys services or an isolated incident that does not reflect the quality of the services in general. A family may think highly of a nursing home, for example, because they feel close to one staff member who has been friendly or kind, even though the care provided by the nursing home is not particularly good overall. Another drawback is that information about quality that is obtained from relatives, friends, or acquaintances may be based on outcomes that are not attributable to the process of care and thus not valid indicators of quality. The physical and mental deterioration of a person with dementia is distressing to everyone involved, and families may have difficulty separating their feelings about the patients condition from their feelings about the service provider. A family whose relative dies in a nursing home after along, difficult illness, for example, may have negative feelings about the facility, even though the patients deterioration and death were caused by his or her illness, not poor care. A final drawback to relying on the opinions of relatives, friends, or acquaintances about the quality of services is that such individuals are likely to have had experience with only one or two service providers. Although they may offer correct information about those providers, they are unable to assist the caregiver in comparing the quality of services offered by other providers. Physicians, Nurses, Social Workers, and Other Health Care and Social Service Professionals People are used to relying on their physician for referrals to medical and health-related services (832). For many people, relying on a physician may be the easiest and most comfortable way to get the
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Chapter 5-Concerns About the Quality and Appropriateness of Services l 169 name of a good service provider. Ideally, a physician who has a long-standing relationship with a patient and family can match what he or she knows about them and what he or she knows about service providers in the community and recommend the best provider for them. This ideal often does not work in practice. Families report that many physicians are not knowledgeable about the kinds of services that dementia patients are likely to need and that some physicians are not willing to spend time talking about services (125,257,412,531 ).8 Physicians knowledge of community services is derived in part from feedback they receive from patients and families they refer to various providers. Physicians who have many patients with dementia may be more likely than those with few demented patients to know about the quality of relevant services. Some people have a tie to a nurse, social worker, psychologist, or other health care or social service professional who might be knowledgeable about the quality and appropriateness of services. Like physicians, these professionals have different areas of expertise and serve different kinds of clients. Some have extensive experience with community agencies and providers who serve people with dementia, whereas others may have never even visited a nursing home, adult day center, or other agency (390). Health care and social service professionals usually have professional contacts that are a potential source of information about quality that generally is not available to families or other informal caregivers. In addition, because of their training, health care and social service professionals have a frame of reference for evaluating quality of care that most families do not have. On the other hand, individual physicians, nurses, social workers, or other health care and social service professionals are unlikely to have a systematic method for evaluating quality. As a result, their judgments about quality, although grounded in professional training and experience, still are impressionistic. It takes time for anyone to become familiar with community agencies and service providers. Health care and social service professionals who are new to a community may know very little about the quality of available services. Lastly, some health care and social service professionals are affiliated with service providers in such a way that they benefit financially from referrals, and some of them routinely refer patients or clients to those providers even if they know that better services are available from other providers. It is not known how often this practice occurs. For all the reasons just mentioned, health care and social service professionals are likely to differ greatly in their ability to provide helpful information about the quality of services. In light of this difference, a question that arises is: How can patients, families, and others know which professionals are most likely to be helpiful? Another question that arises is: When a specific physician or other health care or social service professional gives a caregiver the name of, say, a home care agency for a person with dementia, how should the family interpret the referral?: l l l l l l Does the referral mean that the agency is one that the professional recommends on the basis of his or her extensive knowledge about the quality of care provided by various home care agencies in the community? Does it mean that the agency is one that the professional knows about and regards as good, although he or she is not familiar with other agencies in the community? Does it mean that the agency is one that the professional knows very little about? Does it mean that the agency is one with which the professional has some financial affiliation? Does it mean that the professional is referring the patient to the agency not because of the quality of its care but because he or she knows the agency will accept the patients source of payment? Does it mean that the professional is referring the patient to the agency not because of the quality of its care but because he or she knows that the patient will be difficult to care for, and, for the sake of future referrals, he or she wants to maintain a good relationship with agencies that provide better care? Patients, families, and others may very well assume that a referral from a physician or another health care or social service professional implies at least some endorsement of the agency or provider, 8For H= discussion of this topic, S= ch. 2.
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170 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias and therefore they may not question the basis for the referral. They also may not question referrals because they think it would be disrespectful to the professional or because they do not know what to ask. Some health care and social service professionals routinely give patients or families the names of three service providers in order to give them a choice. Given the different knowledge and motivation of professionals, the meaning of three referrals is no more clear than the meaning of one referral: l l l Should the patient or family assume the first name on the list is the one the professional really recommends? Might all three choices be good, or all three poor? Does a list of three providers imply anything about quality? In s ummary, referrals to service providers by individual health care and social service professionals may or may not indicate that the providers offer good care. Patients, families, and others are unlikely to know this, and without knowing it, they cannot function as informed consumers in selecting services. Professional and Provider Associations Medical societies, nurses associations, and associations of other professionals and providers maybe good sources of information about what services are available. These organizations can often provide lists of their members in a certain area or members who say that they specialize in caring for certain types of patients. Some also refer patients and families to individual association members. These lists and referrals generally are not evaluative however. They simply indicate that the individual provider or agency belongs to the association. Except to the extent that belonging to a given association or having been certified by such an association is evidence of quality, the lists and referrals do not provide information about quality. The Alzheimer's Association Advice books and pamphlets for caregivers of people with dementia often advise caregivers to contact the Alzheimers Association for information about services. Many of these publications imply that the Alzheirners Association-or more likely one of its local chapterswill be able to provide information about quality. One Alzheimers Association pamphlet says, for example: Once you have located a service, you will want to evaluate its quality and appropriateness to your needs. Here again, your local [Alzheimers Association] chapter, whose members have gone through this experience before you, can be of great help (15). As discussed in chapter 8 of this report, information and referral is one of the primary functions of Alzheimers Association chapters, but chapters vary in the manner in which they perform it. In 1988, an OTA contractor surveyed 10 Alzheimers Association chapters by telephone to learn about their information and referral services (484). The chapters were chosen to represent a range of sizes, urban/suburban/rural location, and the use of professional v. volunteer staff. Among other questions, the chapters were asked, How do you determine the quality of services to which you refer patients and families? Chapter respondents reported that they use three methods to determine quality: l informal communication with other agencies; advice from professionals on their board; and feedback from families. One chapter respondent said, This is a small town. I know most of those places (484). None of the 10 chapters had a systematic way of collecting information about the quality of services. Most of the chapters reported that if they receive negative feedback from a family about an agency or provider, they check it out and remove the agency or provider from their referral list if they conclude that the services are inadequate (484). One chapter keeps a file box of families comments about service providers and makes the box available to other families (485). None of the chapters reported routinely asking families about the quality or appropriateness of services they had used. Two of the chapters reported that they ask service providers if they have a license and whether their staff is trained to work with dementia patients. One chapter has a list of nursing homes that have failed government inspections (484). In the opinion of the OTA contractor who conducted the survey and who has visited many Alzheimers Association chapters in addition to those surveyed, the informal methods that chapters use to evaluate quality usually work well and
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Chapter 5-Concerns About the Quality and Appropriateness of Services l 171 chapters generally know which agencies and individuals provide good care for people with dementia (484). She concludes that relying on an informal process works as long as the network of providers and users remains small and the chapter knows the providers and the families and professionals who give it information and feedback. As the network of providers and users expands, however, it becomes more difficult for chapters to maintain accurate information about quality (484). The Southeastern Wisconsin Alzheimers Association Chapter is currently under contract to the State of Wisconsin to provide statewide information and referral services for Alzheimers patients through the Alzheimers Information and Training Center. 9 It has created a computerized database of service providers that is used to give callers information about services in their geographic area (410). According to the Southeastern Wisconsin chapters education coordinator, how to provide information about quality is a big question (263). Callers are given three choices of service providers, if there are three choices. They are told that there are important differences in the quality of services offered by different providers, and they are urged to visit agencies and talk to providers before choosing one. Callers are not told which agencies or providers give good care. The chapter believes that it must be unbiased, partly because of concerns about legal liability. It believes, for example, that callers must be given the names of all the nursing homes in a locality that have a special care unit, not just the name of one facility that the professional staff or volunteers think is good. Some Alzheimers Association chapters give out printed materials with advice on selecting a particular kind of provider. Figure 5-1 is a list of questions for evaluating an adult day care center distributed by the Cleveland Alzheimers Association Chapter. The Greater Washington, DC Alzheimers Association Chapter has a video for families to watch about how to select a nursing home (232). The chapter also has a list of members who have a relative in a local nursing home or board and care facility and are willing to talk to other families about the facility. Caregiver Support Groups Caregivers who attend support groups sponsored by the Alzheimers Association and other public and private agencies often obtain first-hand information from other caregivers about the quality and appropriateness of services they have used. Research indicates that participation in a support group leads to increased knowledge about community services (245) and that this aspect of participation in a support group is valued by group members (294). Many caregiver support groups devote meetings or parts of meetings to discussions about community resources (377). In relatively informal support group meetings, outside experts may share their observations about the quality and appropriateness of services offered by community agencies and providers more freely than they would in a more formal or public situation. The leaders of support groups may also be knowledgeable about community services and willing to share their judgments about quality and appropriateness, either during meetings or in personal discussions later on (256). The primary drawback to relying on caregiver support groups as a source of information about the quality and appropriateness of services is that many caregivers do not belong to support groups. Male caregivers, ethnic minority group caregivers, and caregivers who have no one to care for the patient while they attend a meeting are particularly unlikely to belong (158,314). Dementia Experts" Dementia experts individuals who develop or work in programs designed for people with dementia or who serve many people with dementia-are likely to have opinions about the quality and appropriateness of community services based on information from their own clients who use, or have used, the services. Furthermore, in those communities with only a few agencies providing services specifically for people with dementia, the service providers are likely to know each other, to participate in pl anning any new service for people with dementia, to be on the board of the local Alzheimers Association chapter, to run support groups, and/or to provide training about dementia for the staff of nursing homes and other community agencies. %or more information about the Alzheimers Information and Training Center operated by the Southeastern Wisconsin Alzheimers Association Chapter, see box 8-G inch. 8. Additional information is provided in the section on State information and referral programs in ch. 7.
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172 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias Figure 5-1-List of Questions for Evaluating an Adult Day Care Center, Distributed by the Cleveland Alzheimers Association Chapter A. D. Alzheimer'sDisease and Related Disease Association, Inc. Cleveland Chapter 1801 Chestnut Hills Drive Cleveland Heights, Ohio 44106 Phone: 216-721-8457 EVALUATIN G DA Y CAR E SERVICE S Here is a handy checklist of questions to help you ascertain how well a facility is equipped to fill its goal of providing respite for caregivers: Is it convenient and accessible? Does it provide or arrange for transportation? Does it provide or arrange for companion/aid assistants to help the care-receiver get up bathed, dressed and ready? Are its service hours appropriate for your situation? Do its services include family-supportive programming such as caregiver support groups or referral services? How expensive is it? Is there financial assistance available? Are there any hidden expenses, such as lunch fees, craft supply fees, fees for outings? Are there any hidden benefits, such as the availability of regular professional testing for blood pressure, annual immunizations, hair styling services, dental check-ups, etc. ? (Although such benefits will typically require additional fees, they may be invaluable time-savers for caregivers,) Must you commit to a minimum amount of service, i.e., at least 2 days/week? What is the notification policy for absence due to illness or scheduling problems? What is the policy concerning late arrival or late pick-up? What are the notification policy and conditions for terminating service?
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Chapter 5-Concerns About the Quality and Appropriateness of Services 173 Figure 5-l-List of Questions for Evaluating an Adult Day Care Center, Distributed by the Cleveland Alzheimers Association Chapter-Continued Here is a handy checklist for ascertaining how well a facility is equipped to meet the needs of your loved one: Does it perform a comprehensive assessment prior to placement, including an evaluation of the clients medical needs, social and family history, cognitive functioning, and social skills? Does it restrict or segregate its population by types of impairment or by level of care required? What is the ratio of staff to client? (Remember, a new facility is likely to increase its participants over time; ask for the existing ratio, as well as the worst case ratio.) What training, education, and practical experience does the staff have in dealing with care-receivers whose needs are comparable to those of your loved one? Is there a formal process for reviewing a clients needs and evaluating a clients participation on a regular basis? Is there an accessible and easy-to-talk-to person available to discuss your loved ones special needs, level of participation, etc., when problems or questions arise? Can the facility accommodate the special physical or medical requirements of your loved one, i.e., can it: dispense medicine? give reminders about taking pills? assist with toileting? provide total access and participation to wheelchair-restricted client? effectively communicate with hearing impaired participants? Does the client population appear to be compatible with your loved ones social history? (Some men are uncomfortable with an overwhelming female group; some people are intolerant of racial and ethnic differences. Unless you are honest about the realities of your loved ones social history, a lasting and effective placement will be impossible. )
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174 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias Figure 5-1-List of Questions for Evaluating an Adult Day Care Center, Distributed by the Cleveland Alzheimers Association Chapter-Continued n Are there specific behaviors or care needs which would enforce your loved ones withdrawal from the program? (Since Alzheimers disease is a progressive disorder, you need to find out not only how a facility is going to handle existing care needs, but also whether they are prepared and able to handle potential ones, i.e., can they accommodate: n Are incontinence? difficulties in speaking? wandering? special dietary requirements? the programs and activities adult appropriate? n Does the programming include activities suitable to your loved ones social history and capabilities, i.e.: gardening? outdoor activities? cultural activities? music therapy? physical therapy? travel movies? joint activities with children? productive work, i.e., social service projects or work-for-pay? homemaker crafts? How does the staff handle a clients unwillingness to actively participate? Are meals nutritious and attractively prepared? Are the staff and facility neat, clean, and orderly in appearance? Are there programs/activities which involve families? SOURCE: J.F. Durante, Evaluating Day Care Services, Cleveland Alzheimers Association Chapter, Cleveland OH, no date.
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Chapter S-Concerns About the Quality and Appropriateness of Services l 175 Photo credit: Bill Adams Caregivers who attend support groups often are able to obtain first-hand information about the quality and appropriateness of services from other support group members. Anecdotal evidence suggests that these dementia experts often provide accurate and helpful information about the quality and appropriateness of services to families and others who are lucky enough or persistent enough to reach them. As the network of service providers and users expands in a community, however, dementia experts may become concerned about legal liability and thus increasingly reluctant to recommend specific service providers, especially to people they do not know. Agencies That Provide Telephone Information and Referrals Agencies whose primary function is to provide telephone information and referrals generally maintain a list of community agencies and providers that includes the services they offer and sometimes their area of specialization, service hours, eligibility requirements, fees, etc. Telephone information and referral agencies often give callers the names of several agencies or providers from their list, but they usually do not recommend specific providers. If their list, which is usually compiled from information supplied by providers, includes a category of services for people with dementia, they can give callers information about which providers say they offer such services. In 1988, OTA contractors surveyed agencies in Cuyahoga County, Ohio, to determine what services they provided for people with dementia and interviewed representatives of 24 agencies that reported providing information and referrals for people with dementia (186). 10 Only 1 of the 24 agencies was primarily an information and referral agency; the others were agencies that provide information and referrals in conjunction with their other functions. None of the agencies had systematic procedures for evaluating the quality of services to which they referred clients. Most of the agency representatives said that agency staff members form opinions about the quality of various services in the process of arranging and monitoring services for their clients and through informal discussions with colleagues both inside and outside the agency (186). When the agencies receive telephone requests for information about services, agency staff members respond on the basis of opinions formed in those ways. IOM~~t of the fim~g~ of tie -ey ~d ~temiew~ ~ Cuyhoga county, ohio, ~ dis~ssed in ch. 2. A full mport on the study conducted for OTA in Cuyahoga County is available from the National Technical Information Service in Springfield, VA (see app. A).
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176 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias OTAs contractors concluded that the telephone referral process usually works satisfactorily--i.e., the agencies usually give callers the names of providers they know about and regard as good (186). The criteria agency staff use to evaluate quality are not known, however, and their judgments about quality may or may not be correct. Moreover, some agency staff members believe that the services of for-profit providers are not as good as the services of nonprofit providers and rarely refer callers to forprofit providers. Lastly, some agency staff members do not know about new services. In this regard, OTAs contractors noted that providers of new services for people with dementia often complain that agencies always refer callers to the old providers and it is difficult for a new provider to break in regardless of the quality and appropriateness of its services (185). Hospital Discharge Planners and Case Managers A major function of all hospital discharge planners and case managers is linking people with services. In the process of performing this function and through feedback from patients and families, discharge planners and case managers form opinions about the quality of services offered by various community agencies and individual providers. Published practice guidelines for hospital discharge planners and case managers emphasize the importance of identifying high-quality services for clients and of involving clients and families in selecting services. The American Hospital Associations Guidelines for Discharge Planning, for example, state that hospital discharge planners should identify resources needed to assure highquality post-hospital care and develop with patients and their families appropriate discharge plans (20). The American Nurses Associations guidelines for nursing case management state that one of the goals of case management is the provision of quality health care and that an important function of the case manager is linking the client with appropriate service providers (22). The National Association of Social Workers publication Standards and Guidelines for Social Work Case Management for the Functionally Impaired stresses that case managers should support informed client decisionmaking: Photo credit: Cleveland Chapter of the Alzheimers Association. Concerns about legal liability and organizational pressures limit the ability of some hospital discharge planners and case managers to provide families and others with information about the quality and appropriateness of services they may use for a person with dementia. The case manager must assure that each client receives appropriate assistance by providing the client with accurate and complete information about the extent and nature of the services that are available and by helping the client to decide which services will meet his or her needs (572). Given their involvement in linking patients to services and practice guidelines such as those just mentioned, one might expect that hospital discharge planners and case managers would be a good source of information about the quality and appropriateness of services. On the other hand, hospital discharge planners and case managers are unlikely to have a systematic method for evaluating quality. Consequently, their judgments about the quality of services may or may not be accurate. Furthermore, some hospital discharge planners and case managers are not knowledgeable about dementia and therefore have no basis for determinin g whether a given service is appropriate for people with dementia. Even hospital discharge planners and case managers who are knowledgeable about dementia may not be
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Chapter 5-Concerns About the Quality and Appropriateness of Services l 177 a good source of information about the quality and appropriateness of services for people with dementia, however, because of the concerns about legal liability and org anizational pressures that are discussed below. Concerns About Legal Liability A 1987 legal memorandum of the American Hospital Association answered the question, To what extent, if any, can hospital discharge planning personnel recommend, endorse, or steer discharged patients to particular post-hospital facilities and services? in the following way: It is not the discharge planners responsibility to recommend or endorse particular after-care facilities to patients; indeed, such recommendations or endorsements can expose both the hospital and hospital employees who participate in the discharge planning process to legal risks (21). According to the 1987 legal memorandum, a hospital can be liable for negligence for referring a patient to a facility or service if the patient is injured in some way there and the possibility of the injury could have been foreseen by hospital staff: The likelihood of liability is increased when hospital discharge planning personnel go beyond simply advising, notifying, or informing a patient of his options, and affirmatively recommend or endorse a particular option. A recommendation or endorsement suggests that hospital personnel have investigated the facility according to objective, uniform criteria; are in possession of all information necessary to evaluate reasonably foreseeable risks to the patient if the referral is made; and have determined that the particular facility meets the patients needs (21). According to the 1987 legal memorandum, followup telephone calls by discharge planners to patients or families to ensure that their discharge plan is working also expose the hospital to liability for negligence, because such calls may imply that the hospital is still responsible for the patients care (21). To minimize legal risks, the American Hospital Associations memorandum advises that hospital discharge planners should not decide on their own to make recommendations about post-hospital services or followup calls to discharged patients (2 1). Rather, hospitals should establish general policies for discharge planners to follow in all but exceptional cases, and they should designate a person to make decisions about cases in which there may be some reason for deviating from those general policies. OTA has no information about how often hospital discharge planners recommend specific service providers based on judgments about their quality. Certainly, the concepts expressed in the American Hospital Associations 1987 legal memorandum would discourage discharge planners from making such recommendations. That case managers may also be legally constrained from making recommendations about service providers based on judgments about their quality is suggested by the decision in a 1987 Oregon case Bionic Health Care, Inc. v. State of Oregon Department of Human Resources, et al. (70). Case managers in a public agency had stopped referring clients to one nursing home that they believed was providing poor care and that was under review by the State licensing and certification agency. The nursing home sued, arguing that it had a valid State license and was certified by Medicare and Medicaid and that the case managers could not refuse to refer clients there. The nursing home won, and the case managers have been instructed not to make recommendations to clients about service providers (435). Again, OTA has no information about how often case managers recommend certain service providers on the basis of quality. One member of the advisory panel for this OTA assessment, who interviewed case managers who refer people to nursing homes, found that the case managers generally believed that they were legally constrained from making recommendations about nursing homes based on quality. The panelist went on to comment that clients and their families generally dont know this (389). People who make nursing home referrals in some other countries may not be so constrained. In Australia, for example, groups of health care and social service professionals blacklist nursing homes they believe provide poor care and do not refer clients to these facilities; as a result, the facilities are forced to improve the quality of care they provide or risk going out of business (273). The blacklisting is not capricious, however; grounds for the decisions are identified systematically, in case the decisions are challenged (485).
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178 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias Organizational Pressures Organizational pressures also restrict some hospital discharge planners and case managers from making referrals on the basis of quality. Case managers employed by agencies that provide services in addition to information and referral and case management are often expected to refer clients to their own agencys services rather than services provided by other agencies, irrespective of the quality of the services (186,386). Furthermore, some agencies have formal agreements with other service providers, and case managers employed by those agencies are expected to refer clients to those providers, irrespective of the quality or appropriateness of the services. Organizational pressures to complete care plans quickly also constrain discharge planners and some case managers from making referrals on the basis of quality. Medicares prospective hospital payment system, instituted in 1983, creates strong financial incentives for hospitals to reduce patients length of stay. Discharge planners are under pressure to make plans for patients post-hospital care quickly and may not have time to arrange the best available services (209,947). Moreover, some high-quality services may not be available at the time a patient is discharged from the hospital. Case managers who are required to arrange services within cost limits may be severely restricted in their ability to make referrals on the basis of quality. The case management literature is replete with discussions of the conflict between the role of the case manager as an advocate for the client, trying to ensure that the client receives good services, and the role of the case manager as an administrator of resources, trying to ensure the cost-effective use of limited services (48,175,230,382,893). In one role, the case manager is seen as the agent of the client and, in the other, the agent of the agency or system. Some commentators argue that the two roles client advocate and resource administrator-are not necessarily incompatible if case management is seen as serving an entire population at risk and attempting to meet the needs of that population within available resources (384,892). As noted in chapter 3, a study of 127 case managers in Oregon and Washington State found that the case managers did not perceive the two roles to be in conflict (47). But the theory and practice here are from the point of view of the system, not the client. If there were more than one provider of a certain type of service in a community, and case managers gave patients and families accurate information about the relative quality of the services, it is hard to imagine why some patients and families would accept poor-quality services, knowing that other patients and families were receiving better services (assumin g, of course, that the patients and families were equally able or unable to pay for the services). Most private geriatric case managers are not subject to the organizational constraints discussed above and may therefore be able to provide information about their perceptions of the quality of services offered by various providers. Some private geriatric case managers visit or interview most of the agencies and providers to whom they refer their clients (357,450). On the other hand, hiring a private geriatric case manager can be costly and thus not a realistic option for many patients and families. In addition, some private geriatric case managers provide certain services themselves and may not give clients information about other providers of these services (390). OTAs advisory panel and consultants for this study agreed that at the very least, the staff of agencies that are designated to constitute a national linking system for people with dementia should disclose to their clients any legal or organizational factors that limit their ability to give clients accurate information about the quality and appropriateness of services or to make referrals on the basis of quality. Beyond that, perhaps ways could be found to enable the staff of agencies that constitute the linking system to provide their clients with information about the quality and appropriateness of services and to connect their clients to what they consider the best available services. State Long-Term Care Ombudsmen The Older Americans Act mandates that every State have a long-term care ombudsman to investigate and resolve complaints of residents of nursing homes and other residential care facilities. The long-term care ombudsman program is implemented differently indifferent States, but it is clear that State long-term care ombudsmen and local paid ombudsman employees and volunteers are knowledgeable about the quality of services provided by long-term care facilities. They generally will talk to families and others about the services provided by different
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Chapter 5-Concerns About the Quality and Appropriateness of Services l 179 nursing homes and board and care facilities, and many of them seek opportunities to talk to individuals or groups about steps to take in selecting a facility. They usually do not specifically recommend one facility over another. Some ombudsmen tell callers whether they have had complaints about a facility and, if so, what the subjects of the complaints were and whether the facility cooperated in resolving them (561,629). Other ombudsmen are more cautious about giving out such information. One drawback to relying on State long-term care ombudsman programs for information about the quality of nursing homes and other residential care facilities is that many people are not aware of their State program, and families may not know how to contact the ombudsman. In addition, ombudsman programs in many States are underfunded and understaffed to take on the job of helping people choose good facilities. Lastly, some ombudsmen may not be knowledgeable about dementia and therefore may have no basis for determining whether a given facility provides good care for people with dementia. The Robert Wood Johnson Foundation is currently funding an Ombudservice for home care clients through the Community Council of Greater New York (140). Like State ombudsman programs, the Ombudservice focuses on resolving client complaints-in this case, complaints of people receiving Medicaid-funded personal care services. In the process of investigating complaints, the program accumulates information about the quality of various personal care providers, but that information is not currently available to the public (561). Aging Network Agencies Aging network agencies include State units on aging, area agencies on aging (AAAs), senior centers, and other agencies that receive Older Americans Act funds. 11 Books and pamphlets that advise families about how to locate services often recommend that they contact such agencies for assistance. Although aging network agencies vary greatly, most of them will give families a list of service providers. In addition, many aging network agencies distribute written materials on how to select a provider, and some offer case management to help people locate and arrange services. In any of these agencies, a family might find someone who knows about community services and is willing to share his or her opinions informally about the quality of services offered by different providers. OTA is not aware of aging network agencies that have a systematic method for evaluating service providers or giving families and others information about their relative quality. Other State and Local Government Agencies In some States, State and local offices of the departments of health, mental health, human services, social services and/or public welfare, and regional or local health plannin g agencies have lists of providers, their services, and their practice specialties, which can be requested by anyone. People may also be able to find out from one or more of these agencies whether certain providers are licensed and to obtain the results of government inspections of facilities. The agencies are unlikely to provide other information about the quality of specific service providers. As with aging network agencies, however, families may be able to find someone in any of the agencies who is knowledgeable about providers and willing to talk informally about their quality. Government Regulatory Agencies Various government agencies regulate health care, long-term care, and other services that may be needed for people with dementia: l l l State agencies license individual professionals and nonprofessional service providers (e.g., physicians and home health aides). State and local government agencies license health care and long-term care agencies (e.g., nursing homes and home health care agencies). Federal and State Medicare and Medicaid agencies certify facilities and service providers that receive reimbursement from Medicare and Medicaid, and they contract with peer review organizations (PROS) to review the hospital care and some nursing home and home health care provided to Medicare and Medicaid beneficiaries. Each of these regulatory agencies has several purposes, one of which is to safeguard quality of care. llFor more ~o~tion on aging network agencies, in pdcul~ AAAs, see ch. 8.
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180 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias If government regulation guaranteed that all services were at least adequate, families and others would not have to worry about basic aspects of quality and could concentrate instead on finding services that matched the individual needs of the patient. Government regulation does not prevent inadequate care, however. A range of quality, from excellent to poor, is found in agencies subject to extensive regulation, and inadequate care is given by regulated and unregulated providers and in regulated and unregulated settings (305,524,563,816,821, 836,875). Many factors contribute to the persistence of poor-quality care despite government regulation. The factor cited most often is inadequate funding for services (87,205,331,376,392,563). A related factor is the shortage of qualified personnel-especiall y nurses aides, home health aides, and homemakers who provide much of the paid personal care for people with dementia (109,305,331,563,821,852). The shortage of qualified aides and homemakers is due in large part to inadequate funding. These individuals are paid very little. They are often poorly trained. Turnover is high, and those who receive training do not necessarily stay with the job. It is said that nursing homes and home care agencies compete for workers with McDonalds and other fast food restaurants-and often lose (747). A third factor that is cited as contributing to the persistence of poor-quality care despite government regulation is deficiencies in regulatory procedures (17,305,392,563,814,821,831,852). Deficiencies in regulatory procedures include the use of inappropriate standards for evaluating quality, infrequent monitoring of care, and lack of credible sanctions for poor care. Many regulatory programs are underfunded and do not have sufficient staff for inspections and enforcement proceedings. This weakens the regulatory effort. Government and nongovernment agencies and voluntary associations are working to improve regulatory procedures. A description of their efforts and analysis of the potential for their success would require another full study. Suffice it to say that efforts to improve regulatory procedures for nursing homes and board and care facilities have been under way for more than 10 years, with some but certainly not full success. Efforts to improve regulatory procedures for in-home services are only beginning. Many people will have to select services long before government regulatory programs are improved sufficiently to guarantee that all available services are at least of adequate quality. In the meantime, the question posed here is whether the results of existing regulatory procedures would be helpful to people who are trying to select good services. If a provider has a State license, can families assume the provider will give good care? If a nursing home is certified by Medicare, does that mean it provides good care? Is there information from government inspections of nursing homes and home health care agencies that is available to families and is or could be valuable to them in selecting services? The answers to these questions vary from one State and locality to another, for different types of providers, and for services paid for by different funding sources. Much of the information needed to answer the questions is not available. It is probably correct to conclude, however, that the results of existing regulatory procedures could be useful to some people who are trying to select services, with the following important qualifications: l l Not all services that might be needed for people with dementia are regulated. Although all States regulate some types of board and care facilities, they do not regulate other types. Adult day centers are not regulated in some States. Home health care agencies must be certified by Medicare and Medicaid in order to receive reimbursement from those finding sources, but many agencies that provide inhome services are not eligible for or do not seek Medicare or Medicaid certification. Many States license agencies that provide some kinds of in-home services, but agencies that provide other kinds of in-home services are not required to be licensed, and some States do not license any home care agencies (305,821,852). Moreover, individual in-home workers employed by home care agencies differ in their abilities and motivation; the agencys license, if any, does not reflect these differences. Lastly, individual in-home workers who are not employed by an agency and are hired from a newspaper ad or other such source are not regulated in most States. Information from licensing, certification, and PRO review procedures may be difficult for families and others to obtain. In 1988, for the
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Chapter S-Concerns About the Quality and Appropriateness of Services l 181 l l l first time, the U.S. Department of Health and Human Services released information from Medicare and Medicaid nursing home surveys. To get information about other types of agencies and service providers, one would have to know that the information exists; find out which State or local government office keeps the information; obtain permission to see it; and probably go there to do so. Some agencies require a prior written request for information and charge a fee. OTA does not know how many people attempt this process or succeed in getting the information they want. Regulatory procedures are often based on minimum standards and/or standards that are not directly related to peoples primary concerns about quality. State licensing requirements for professionals and service providers often set minimum standards for training and experience. Licensing requirements for some types of agencies focus only on fire and safety standards. The criteria used in some survey and certification procedures translate only indirectly into quality of care. Thus, the information about quality that families and others are looking for may not be contained in the findings of regulatory procedures. People mu-y have difficulty interpreting information from regulatory procedures. Some regulatory procedures are lengthy and complex. Reports of their findings are not written for the layperson. Moreover, people who are not familiar with the procedures and the agencies being surveyed may not know which findings are noteworthy. In support of this observation, one OTA advisory panelist commented, There are violations, and then there are violations! (390). Information from existing regulatory procedures is not dementia-specific. OTA is not aware of any State or locality that regulates services for people with dementia using different criteria or procedures than it uses to regulate services for people with other diseases and conditions, although some States now are developing criteria to evaluate special care units in nursing homes. Since dementiaspecific criteria have not been used in regulatory procedures (and generally have not been available), information about aspects of agencies services that might make one agencys services more appropriate than another agencys l All services for a person with dementia may not be collected in the regulatory process or included in regulatory reports. Information derived from regulatory procedures may not be correct. Some regulatory procedures rely on notes in patients medical records and the agencys written policies to evaluate quality of care rather than on direct observations of the process of care. This approach can lead to what is called paper compliance i.e., agencies meet quality standards on the basis of documentation inpatients medical records and written policies rather than actual care they provide (385,925). Even when inspectors do observe the process of care, what they see may not be the ordinary process of care, but rather a special show put on to impress them (120). these factors limit the usefulness of findings from government regulatory procedures for families who are trying to select good services. It is not clear to what extent individuals and agencies that refer people to services use the findings from gov ernment regulatory procedures as indicators of the quality of services. OTA informally asked about 20 individuals and agencies that make referrals for people with dementia: 1) whether they check to see that service providers to whom they refer patients have required licenses or certification, and 2) whether they review government inspection reports on agencies to which they refer patients. The majority answered no to both questions. State long-term care ombudsmen do often use reports of nursing home inspections in their discussions with people who are trying to select a good nursing home. Government regulatory programs could be designed to produce information about quality that would be helpful for people who are trying to select good services (385,738), but existing programs are not designed for this purpose. The Omnibus Budget Reconciliation Act of 1987 mandated changes in many requirements for Medicare and Medicaid certification of nursing homes and home health care agencies, including anew survey protocol for home health care agencies and changes in nursing home regulations that also will result in issuance of a new survey protocol. These new protocols should be designed so that the information they collect is useful to families and others who are trying to select good services, and the resulting information should
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182 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias be presented in a format and written in language that a layperson can understand. Voluntary Accreditation Programs Some agencies that provide services for people with dementia voluntarily comply with requirements of independent associations, such as the Joint Commission on Accreditation of Health care Organizations (JCAHO), the National League for Nursing (NLN), and the National Home Caring Council of the Foundation for Hospice and Home Care (FHHC). JCAHO accredits hospitals, nursing homes, hospital-affiliated home health care agencies, and beginning in 1988, other home health care agencies. Most hospitals in the United States are JCAHO-accredited, as are more than half of all hospital-affiliated home health care agencies (628) and a small proportion of nursing homes (about 1,400 in 1986) (563). NLN, in conjunction with the American Public Health Association, accredits home health care agencies. FHHC, a sister organization of the National Association for Home Care, accredits homemaker-home health aide agencies. Very few agencies are accredited by either group: as of 1986, about 100 agencies had NLN accreditation, and about 140 had FHHC accreditation (734). Agencies that seek JCAHO, NLN, or FHHC accreditation choose to be evaluated and pay for the survey process that leads to accreditation. One might assume, therefore, that it is important to these agencies to provide high-quality care and to be recognized for doing so. If that is true, accreditation might be a useful indicator of quality for people who are trying to locate good services. There have been very few attempts to compare the quality of care provided by accredited and nonaccredited agencies, however (832). In addition, although the outcome of an accreditation survey is public information, the full report of an evaluation usually is not, so one cannot review findings of the survey with respect to specific standards. Families and others who are trying to select good services probably are not aware of accreditation. Most books and pamphlets that advise people about locating services for people with dementia do not mention it. Moreover, when OTA informally asked individuals and agencies that make referrals for people with dementia whether they refer people to home care agencies that are not accredited by JCAHO, NLN, or FHHC, most were unsure, and several acknowledged that they did not know very much about accreditation for home care agencies. Internal Quality Assurance Programs Many health care, social service, and other agencies have an internal process to monitor quality of care and correct problems that are found. Internal quality assurance is widely advocated as a way for agencies to maintain acceptable quality of care. Internal quality assurance safeguards quality if monitoring is done systematically by people who have the authority and resources to correct problems (732). Otherwise, quality assurance can deteriorate into a formality that diverts staff from patient care and other important functions. Although agencies with an effective internal quality assurance program may provide better care than other agencies, families and other outsiders cannot know whether a particular agencys quality assurance program is effective or just a formality. For them, knowing whether an agency has an internal quality assurance program is not a useful indicator of quality. Other Possible Sources of Information In some localities, private agencies and voluntary associations collect and publicize information about service providers. In New York City, for example, the United Hospital Fund makes annual nursing home inspections and then publishes information obtained from the inspections (561). Newspapers and other publications sometimes rate agencies and health care professionals based on the opinions of consumers or other health care professionals. An example is the publication, Washington Consumers Checkbook, which has published ratings of hospitals (885) and recently asked people to evaluate homemaker/home health care agencies they had used. Ratings in commercial publications are likely to appear as a feature item, on a one-time basis, and not to be updated regularly. According to the editor of Washington Consumers Checkbook, the time required to conduct surveys and interpret the findings on a regular basis may not be justified from a business standpoint because these features do not attract many additional readers (428).
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Chapter S-Concerns About the Quality and Appropriateness of Services 183 Changes in ownership, management, or key staff in nursing homes and other agencies can have a dramatic effect on quality of care. Such changes occur frequently in some agencies, so to be accurate, ratings must be updated. Private agencies and voluntary associations may not have the resources to update ratings regularly. Many books and pamphlets that inform people about the types of health care, long-term care, social, legal, and other services that may be available also contain suggestions about how to evaluate services and lists of questions for families and others to ask service providers. Figure 5-2 is an example of a checklist of questions for families who are trying to select a nursing home. Several national organizations have developed initiatives to help people become informed consumers of services for themselves or volunteer advocates to help others select good services. The National Council on the Agings project Long-Term Care CHOICES, sponsored several community forums in Pennsylvania in 1987 to educate older people and their families about long-term care options. Similar forums were planned for other areas of the country (308). The CHOICES project produced a series of pamphlets about long-term care and a manual for organizing a consumer education campaign on long-term care. The American Association of Retired Persons (AARP) sponsors many projects to educate people about long-term care and to train them to be informed consumers of long-term care services. One project in Washington, DC, is training volunteers to be home care advocates to help other people locate good home care services (791). Summary Many of the books and pamphlets that offer advice about obtaining services for people with dementia stress that the final decision about services rests with the demented persons family. These publications urge families to talk to people, ask questions, and visit agencies before choosing one, and they recommend many possible sources of information about the quality and appropriateness of services. OTAs review presented in the preceding section suggests that accurate information about quality and appropriateness is sometimes available from some of the recommended sources but is not consistently available from any of them. The most helpful information often comes from informal discussions rather than from formal referrals or reports. But many telephone calls may be necessary to find the right person to talk to. Health care and social service professionals and some of the other possible sources of information may or may not be knowledgeable about the quality or appropriateness of available services. With a few exceptions (e.g., government regulatory programs and voluntary accreditation programs), none of the sources of information discussed above has a systematic method for evaluating quality. The validity of the information they provide, therefore, is difficult to judge. Lastly, concerns about legal liability and organizational pressures may limit the ability of hospital discharge planners, some case managers, and others to make referrals based on considerations of quality. Families are unlikely to know that these individuals are subject to these legal and organizational constraints and may incorrectly assume that the referrals they receive are endorsements of the services. Some people get helpful advice, but there are no sure sources of evaluative information, and many blind alleys. Sometimes, obtaining accurate information or a referral to a good service provider seems to be a matter of chance. Family caregivers who call a lot of agencies, talk to a lot of people, and ask a lot of questions probably increase the likelihood that they will find the information they need to select good services. LIMITATIONS ON CAREGIVERS ABILITY TO OBTAIN INFORMATION The discussion in the preceding section suggests that obtaining accurate information about the quality and appropriateness of services for people with dementia is often difficult. Some families and other informal caregivers are able to obtain the information they need by contacting a variety of people and agencies, asking questions, and visiting potential service providers, but for a variety of reasons discussed in this section, other families and informal caregivers are not. To obtain information about quality, caregivers first have to know which agencies or individuals, if any, provide the services they need. In many
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184 l Confused Mind, Burdened Families: Finding Help for People With Alzheimers & Other Dementias Figure 5-2List of Questions for Families Trying To Select a Nursing Home Yes No 1. 2. 3. 4. 5. 6. Does the home have a current license from the state? Does the administrator have a current license from the state? If you need and are eligible for financial assistance, is the home certified to participate in government or other programs that provide it? Does the home provide special services such as a specific diet or therapy that the patient needs? 11. Hallways a Large enough for two wheelchairs to pass with ease? b. Hand-grip railing on the sides? 12. Dining room a. Attractive and inviting? b. Comfortable chairs and tables? c. Easy to move around in? d. Tables convenient for those in wheelchairs? e. Food tasty and attractively served? f. Meals match posted menu? g. Those needing help receiving it? 13. Kitchen a. Food preparation, dishwashing, and garbage areas separated? b. Food needing refrigeration not standing on counters ? c. Kitchen help observe sanitation rules? 14. Activity rooms a. Rooms available for patients activities? b. Equipment (such as games, easels, yam, kiln, etc. ) available? c. Residents using equipment? 15. Special-purpose rooms a. Rooms set aside for physical examinations or therapy? b. Rooms being used for stated purpose? 16. Isolation room a. At least one bed and bathroom available for patients with contagious illness? 17 Toilet facilities a Convenient to bedrooms? b. Easy for a wheelchair patient to use? c Sink? d. Nurse call bell? e Hand grips on or near toilets? f. Bathtubs and showers with nonslip surfaces? 18. Grounds a. Residents can get fresh air? b. Ramps to help handicapped? PHYSICAL CONSIDERATIONS Yes No Location a. Pleasing to the patients? b Convenient for patients personal doctor? c Convenient for frequent visits? d Near a hospital? Accident prevention a Well lighted inside? b Free of hazards underfoot? c Chairs sturdy and not easily tipped? d. Warning signs posted around freshly waxed floors? e. Handrails in hallways and grab bars in bathroom? 7 Fire safety a, Meets federal and/or state codes? b. Exits clearly marked and unobstructed? c. Written emergency-evacuation plan? d. Frequent fire drills? e. Exit doors not locked on the inside? f. Stairways enclosed and doors to stairways kept closed? 8. Bedrooms Open on to hall? Window? No more than four beds per room? Easy access to each bed? Drapery for each bed? Nurse call bell by each bed? Fresh drinking water at each bed? At least one comfortable chair per patient? Reading lights? Clothes closet and drawers? Room for a wheelchair to maneuver? Care used in selecting roommates SERVICES 19. Medical Physician available in emergency? Private physician allowed? Regular medical attention assured? Thorough physical immediately before or upon admission? Medical records and plan of care kept? Patient involved in developing plans for treatment? Other medical services (dentists, optometrists, etc ) available regularly? Freedom to purchase medicines outside home? 9 Cleanliness a Generally clean, even though it may have a Iived-in look? b. Free of unpleasant odors? c. Incontinent patients given prompt atten tion? 10. Lobby a. Is the atmosphere welcoming? b If also a lounge, is it being used by residents? c Furniture attractive and comfortable? d. Plants and flowers? e. Certificates and licenses on display?
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Chapter 5-Concerns About the Quality and Appropriateness of Services l 185 20 Hospitalization a Arrangement with nearby hospital for transfer when necessary? 21, Nursing services a. RN responsible for nursing staff in a skilled nursing home? b. LPN on duty day and night in a skilled nursing home? c. Trained nurses aides and orderlies on duty in homes providing some nursing care? 22. Rehabilitation a. Specialists in various therapies available when needed? 23. Activities program a. Individual patient preferences observed? b. Group and individual activities? c. Residents encouraged but not forced to participate? d. Outside trips for those who can go? e. Volunteers from the community work with patients? 24. Religious observances a. Arrangements made for patient to worship as he or she pleases? b. Religious observances a matter of choice? 25. Social services a. Social worker available to help residents and families? 26. Food a. Dietitian plans menus for patients on special diets? b. Variety from meal to meal? c. Meals served at normal times? d. Plenty of time for each meal? e. Snacks? f. Food delivered to patients rooms? g. Help with eating given when needed? 27. Grooming a. Barbers and beauticians available for men and women? 28. 29. 30. 31. 32. 33. 34. ATTITUDES AND ATMOSPHERE General atmosphere friendly and supportive? Residents retain human rights? a. b. c. e. f. g. h. i. j. k. May participate in planning treatment? Medical records are held confidential? Can veto experimental research? Have freedom and privacy to attend to personal needs? Married couples may share room? All have opportunities to socialize? May manage own finances if capable or obtain accounting if not? May decorate their own bedrooms? May wear their own clothes? May communicate with anyone without censorship? Are not transferred or discharged arbitrarily? Administrator and staff available to discuss problems? a. Patients and relatives can discuss complaints without fear of reprisal? b. Staff responds to calls quickly and courteously? Residents appear alert unless very ill? Visiting hours accommodate residents and relatives? Civil-rights regulations observed? Visitors and volunteers pleased with home? scoring Generally, the best home is the one for which you check the most yes answers. However, different homes offer different services. You must decide which services are most important to you. If the answer to any of the first four questions is no, do not use the home. SOURCE: L.P. Gwyther, Nursing-Home-Care Issues, Understanding Alzheimers Disease, M.K. Aronson (ed.) (New York, NY: Charles Scribner & Sons, 1988). communities, that information is difficult to obtain. 12 To understand why they should investigate different service providers, caregivers need to know that available services are likely to vary considerably in their quality and appropriateness for people with dementia; some caregivers do not know this (57). In addition, it takes time to evaluate different service providers. Many caregivers delay looking for services until their situation has become desperate. Consequently, they are trying to locate services in an atmosphere of crisis in which there is no time to contact individuals and agencies that might be able to give advice about the quality and appropriateness of services (289,767). Even if caregivers have time, some of them do not have anyone to care for their demented relative while they make telephone calls or visit agencies. Some caregivers lack transportation to visit agencies, and some are physically or cognitively impaired themselves. Furthermore, deciding to place a relative or friend in a nursing home is emotionally upsetting to many people (84,517,884), and decisions about other services may be upsetting as well. People who are upset may have difficulty remembering the questions they are supposed to ask providers and
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186 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias keeping track of what they have heard from various sources about the quality of different services. Another important point is that some people in this country have never or rarely called a government agency or another source to ask for information or advice. Because of personality, socioeconomic status, educational or cultural background, and/or language differences, some individuals may find asking for information or advice very difficult. Asking questions of service providers is also difficult for some people. Books and pamphlets for families of people with dementia and for elderly people often include lists of questions they are supposed to ask about agencies and service providers they may use. These lists are often long and all-inclusive. Some questions are for the family to answer, but most are for the service provider. Some families would be uncomfortable asking a service provider all or even a portion of the questions. For all of these reasons, some families and other informal caregivers may be unable to obtain the information they need to make informed choices about services. A linking system that relied on families and other informal caregivers to function as informed consumers in selecting services for people with dementia would not meet the needs of families and other caregivers who cannot do so. Finally, although the discussion here has focused solely on the limitations on caregivers ability to obtain information about the quality and appropriateness of services, the reader should keep in mind that at least 10 percent of people with dementia have no informal caregiver to help them. 13 Clearly, those individuals are not able to obtain for themselves information about the quality and appropriateness of services. Nor would they be able to use the information, even if they could obtain it. APPROACHES FOR DEVELOPING CRITERIA TO EVALUATE THE QUALITY OF SERVICES The development of criteria to evaluate the quality and appropriateness of services for people with dementia is probably the most important step that could be taken to enable a federally mandated linking system to connect people with dementia to the best available services. Certainly if a linking system were going refer people to or arrange for them only services that met certain standards, the standards would have to be based on accepted criteria. As noted at the beginnin g of this chapter, it is not the function of a linking system to develop criteria to evaluate services, but this section discusses some of the criteria that might be used, who should develop them, and who could use them. Criteria to evaluate the quality of services for people with dementia ultimately must be based on agreed-on goals and proven methods of care. Since there is not yet a consensus about the goals of care for people with dementia, and the effectiveness of many methods of care has not been tested, it is premature to establish comprehensive criteria to evaluate quality. Once set, the criteria could become entrenched and discourage the kind of experimentation that has led to innovative services and care methods in the past few years. This outcome would be especially likely if the criteria were adopted for government regulatory purposes. In developing its Best Practices for Special Care Programs for People With Alzheimers Disease and Related Disorders, the American Association of Homes for the Aging ( AAIA) has been wary of this possibility. AAHA emphasizes that the best practices are not criteria to assess special care units but rather guidelines for nursing homes that may establish such a unit. They are intended to highlight desirable outcomes and examples of good care (793). The tasks of specifying goals, identifying effective methods of care, and developing criteria to measure quality and effectiveness are interrelated. Conclusions in one area may clarify or resolve issues in other areas. As tentative goals are set, possible methods of achieving them can be identified and tested. At the same time, as methods of care are tested, it becomes clearer what goals are achievable. A major unresolved question with respect to longterm care services for people with dementia, for example, is the extent to which rehabilitation is possible. Is it reasonable to expect improvements in cognitive ability or functioning in this patient population? (390). The answer to that question, which must be derived from research and experimentation with alternate methods of care, will in turn lsFor the derivation of this estimate, see ch. 1.
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Chapter 5--Concerns About the Quality and Appropriateness of Services l 187 determin e what goals are realistic for services for people with dementia. Even though it is premature to establish comprehensive criteria to evaluate the quality of services for people with dementia because of the lack of agreedon goals and proven methods of care, an attempt to identify possible criteria is helpful in pointing out areas of agreement and disagreement and areas in which further research would be useful. The following discussion is intended in that spirit. What Criteria Might Be Used? Two prerequisites for good care that are cited in virtually all books, pamphlets, and articles about services for people with dementia are that the service providers be knowledgeable about dementia and that they be skilled in caring for or responding to the special needs of people with dementia. OTA is not aware of any other factors that are so consistently cited as prerequisites for high-quality, appropriate services for people with dementia. OTAs 1987 report Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias discussed the problems involved in attracting and retaining skilled, knowledgeable personnel to work with dementia patients and the education and training needs of professionals, paraprofessionals, and nonprofessionals who care for these patients (831). That report described education and tr aining needs in terms of both factual information and relevant experience. If there were criteria that accurately measured a service providers knowledge about dementia and skills in working with people with dementia, those criteria probably also would be valid structural indicators of the quality and appropriateness of the services. In many fields, an individuals knowledge and skills are represented by his or her credentials (e.g., educational degrees, licenses, certificates) or job title. Although some aspects of the knowledge and skills of many professional, paraprofessional, and nonprofessional groups are relevant to the care of people with dementia, OTA is not aware of any group with a uniform credential or job title, in which all or even most of the group members are knowledgeable about dementia and skilled in caring for people with dementia. Some physicians, nurses, social workers, lawyers, and psychologists are knowledgeable about dementia, whereas others are not. The same is true for nursing home aides, home health aides, homemakers, and other paraprofessional and nonprofessional service providers. Thus, neither credentials nor job title are valid criteria to measure service providers knowledge about dementia and skills in working with people with dementia. An alternate structural criterion is training. Dementia-related training often encompasses the nature and course of diseases that cause dementia, symptoms, patient care needs, recommended responses to common behavioral problems, and methods for supporting family caregivers. Many public and private agencies and voluntary associations offer tr aining for all kinds of people who work with dementia patients. Training manuals have been developed by Alzheimers Association chapters, provider associations, and others. 14 Some Alzheimers Association chapters have or are developing procedures for formally certifying people they have trained (183). At least one chapter certifies in-home respite and personal care workers it has trained. When someone contacts the chapter for information about such workers, he or she is given the names of people the chapter has certified. The director of the Cleveland Alzheimers Association Chapter points out that chapters also could certify agencies if they have trained the agencys staff. Because of high staff turnover in some nursing homes and home care agencies, however, certification would lose its meaning quickly unless training were repeated frequently (183). To choose training of service providers as a structural criterion to measure the quality and appropriateness of services assumes that training about dementia and how to care for people with dementia significantly increases the trainees knowledge and skills in working with people with dementiaan assumption that is widely held but has not been proven in this or related contexts (31,904). The content and duration of the training, who provides it, 14sw, fore~ple: EL. BrNa.rdand L.P. G~er,]n-HomeRe~ite Care: Guidelines for Training Respite Workers Serving ~emo@mpairedAdu/ts (50); C.J. French etaL, Understanding andCaringfor the Person With AlzheimersDisease (231); L.P. Gwyther, Care ofAlzheimersPatients:A Manual for Nursing Home Staf(285); J.T Harkulich and B.A. Calami@ A Manual for Caregivers of Alzheimers Disease Clients in Long-Term Care (618); ~d R. Kahn et al., How To Care for the Alzheimers Disease Patient: A Comprehensive Training Manual for Homemaker-Home Health Aides (378).
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188 Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias whether trainees are tested in any way, and whether the training is reinforced over time probably influence its effectiveness. Although some members of the advisory panel for this OTA study considered training a useful structural indicator of quality and appropriateness, others considered it a weak, unproven intervention that generally is not a valid indicator of quality. Some members of the OTA advisory panel pointed out that it is often easier to obtain agreement about indicators of poor quality than of good quality. They suggested that identifying negative outcomes (e.g., patient agitation and screaming) and clearly undesirable structural and procedural indicators (e.g., lack of staff training and inappropriate use of psychotropic medications to control patient behavior) might make available some information about quality without setting comprehensive criteria. Certainly information about the performance of different service providers with respect to these negative criteria would help families and others to avoid very poor-quality care. Many other criteria for evaluating the quality and appropriateness of services for people with dementia have also been proposed. Some researchers who are conducting a 3-year study that compares nursing homes with special care units and nursing homes without such units hope that their findings will allow them to derive indicators of quality (761). Outcome criteria they are considering include: l l l l l measures of acute health care service utilization, such as hospitalization rates and emergency room rates; measures of mortality and morbidity, including death, fractures, development of decubiti (bed sores), and medication reactions; changes in fictional status, including development of contractures, loss of ability to ambulate, and changes in self-care status, socialization, or mental status; changes in the number and intensity of behavioral disturbances; and changes in overall health (761). Structural and process criteria they are considering include: l staff-to-patient ratios; l staff training; facility design; l l l l l environmental characteristics (e.g., noise, lighting, personal items in the patients room); use of medications; patient involvement in activities; involvement of families; and staff morale (761). Caregiver burden is another outcome criterion that seems particularly relevant for certain services for people with dementia. On the other hand, many factors other than the quality and appropriateness of services affect caregiver burden. Outcomes are valid indicators of quality only if they are attributable to the process of care. In practice, therefore, a measure of caregiver burden may not be a valid indicator of quality. Patient satisfaction and caregiver satisfaction with services are other outcome criteria that might be used to assess quality and appropriateness. Although people who have used a service maybe a valuable source of information for others who are trying to select good services, OTA is not aware of any organization that routinely collects peoples opinions about services they have used for individuals with dementia, analyzes and s ummarizes the findings, and makes them available to other people. OTA is also not aware of any research on the reliability or validity of patient and/or caregiver satisfaction as indicators of the quality of services for people with dementia. Research on patient satisfaction as an indicator of the quality of ambulatory and inpatient medical care was reviewed for OTAs 1988 report The Quality of Medical Care: Information for Consumers (832). Over 450 relevant publications were screened, and 50 studies were analyzed in depth. The review indicated that: l l l l patients ratings of the technical quality of care they received are somewhat inflated but generally in agreement with physicians ratings of the same care; patients ratings of the interpersonal aspects of care they received are generally in agreement with ratings by trained observers and others; patients are generally willing to discuss and rate their medical care; older people tend to rate the quality of their care more favorably than younger people, although the reason why is not known; and
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Chapter .5-Concerns About the Quality and Appropriateness of Services 189 l people tend to agree with attitude statements regardless of their content; thus favorably worded statements tend to elicit favorable comments, and negatively worded statements elicit negative comments--and this effect is particularly likely to occur among people of low socioeconomic status (832). It is sometimes argued that patients ratings of medical care reflect patients attitudes about life in general. OTAs literature review suggests that the effect of patients attitudes about life in general on their ratings of medical care, if an effect exists at all, is weak in the case of ratings of ambulatory and inpatient medical care (832). Many people with dementia cannot evaluate the services they receive, but their families or other informal caregivers can. Some services are intended primarily to support family caregivers; obtaining caregivers evaluations of those services, therefore, is clearly appropriate. In some instances, however, a familys evaluation of a service provided for the patient may differ from the evaluation the patient might make if he or she were capable of evaluating the service. For example, families sometimes consider certain activities provided in nursing homes or adult day care centers to be demeaning to their relative with dementia, even though the patient seems to like the activities and the staff believes they are beneficial. In such instances, the familys satisfaction with the services may not be a valid criterion to measure its quality or appropriateness for the patient (764). Other factors also may affect the validity of patient and caregiver satisfaction as indicators of quality and appropriateness. Patients and families often are afraid to report poor-quality care because they fear retaliation against the patient or loss of the services (33,392). The validity of peoples opinions about services also may be affected by the timing of the evaluation in relation to their use of the service (764), sociodemographic characteristics, their expectations for the service, and whether they paid for it. Anecdotal evidence suggests that some people who receive publicly funded services do not report poor-quality care because they think they do not deserve the services and that they should just accept whatever services they get (747) It could be argued that since patients and caregivers opinions about services are, by definition, subjective, they cannot be valid indicators of quality. If an agency or voluntary association routinely asked patients and caregivers about the quality of services they have used, however, and a large number of responses were collected, idiosyncratic factors that might invalidate one individuals response would become less significant, and common observations and evaluations would emerge. It is these common findings that would be valuable to other people that are trying to select good services. Peoples opinions are a particularly appropriate indicator of the quality of services if quality of life is a goal of such services. Other, more objective and more easily quantifiable criteria that frequently are used in regulatory programs and may be more acceptable to service providers do not necessarily reflect the values and preferences of patients and families (877). Using patient and caregiver satisfaction as indicators of the quality of services for people with dementia has two other advantages, as well. These indicators could be used immediately, even before there is agreement about other criteria to assess quality. In addition, using them would make available some information about quality without setting other criteria that could discourage experimentation with alternate methods of care. Who Should Develop the Criteria and Who Could Use Them? Government agencies, private agencies, and voluntary associations each have a role in establishing criteria to evaluate the quality of services for people with dementia. Ultimately, Federal, State, and local government agencies determine what criteria are used in regulatory programs. Government agencies are unlikely to begin developing criteria to evaluate the quality of services for people with dementia, however, until they are required to do so for a dementia-specific program--e. g., a program that pays more for nursing home care in a special care unit than in other nursing home units. If regulations for nursing homes and home health care agencies are any example, it could take a long time for government agencies to develop criteria, and the results might not meet the needs of families and others who are trying to select good services. The initial steps of setting goals and proposing and evaluating criteria to measure quality might be better accomplished by private agencies and voluntary associations than by government agencies. The
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190 Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias tasks of soliciting, summ arizing, and disseminating peoples opinions about the quality of services they have used would probably be best accomplished by voluntary associations such as Alzheimers Association chapters, some of which already perform some of the tasks informally. The most appropriate role for government with respect to developing criteria to evaluate the quality of services for people with dementia might be to fund research to evaluate and compare the effectiveness of alternate methods of care and to sponsor forums for discussion among health care and social service professionals, service providers, families, and others about goals and methods of care and criteria for evaluating quality. Families and other informal caregivers could use any criteria that were developed and/or any available information about peoples opinions about the quality of services to identify service providers who offer high-quality care. Other agencies and organizations could also use the criteria and any available information about peoples opinions about the quality of services to evaluate service providers, with the result that information about the quality and appropriateness of services for people with dementia would be available from those sources. An important, unresolved question is whether case managers and other employees of agencies that constituted a federally mandated linking system could use either the criteria or information about peoples opinions about the quality of services to select the best available services for their clients or whether their use of such criteria and information would expose them, their agencies, or the linking system to unacceptable legal risks. To resolve this question will require a thorough analysis of the legal issues raised when an agency or system that links people to services provides its clients with information about the relative quality of available services or selects services for its clients on the basis of information about the quality and appropriateness of the services. The legal risks to the linking system and its employees are likely to be lessened to the extent that any information about quality and appropriateness given out by the linking system is perceived as accurate by service providers and others and to the extent that criteria used by case managers and other employees of the system to select services are seen to reflect the best available information from research and provider experience about what is good care for people with dementia. Thus far, this chapter has focused primarily on how families and other informal caregivers can select good services and has ignored the problem of people with dementia who have no informal caregiver to help them. Certainly, as noted earlier, the information about quality and appropriateness that families and other informal caregivers need to make informed decisions about services should also guide decisions about services for people with dementia who have no informal caregiver. That can only happen if someone uses the information about quality and appropriateness to select services for these individuals. For that reason, it is particularly important that concerns about legal risks to a linking system and its employees for selecting services for its clients on the basis of information about the quality and appropriateness of the services be resolved expeditiously. AGENCY PROCEDURES FOR MONITORING & CONTROLLING THE QUALITY OF SERVICES Some agencies that link people to services have procedures for monitoring and controlling the quality of the services they arrange for their clients. Certain of these agencies provide services and therefore can assure (i.e., assess and correct problems in) the quality of those services directly. Other agencies contract for services; these agencies cannot assure the quality of services provided by any particular agency or individual, but they can use their contracting procedures to select service providers that meet certain standards. The capacity of these types of agencies to control the quality of services to which they link people is an important factor for policymakers to consider in deciding what type of agencies should constitute a system to link people with dementia to services. This section describes some agencies procedures for monitoring and controlling the quality of services, including procedures in which patients and families are involved in monitoring and controlling the quality and appropriateness of the services they receive. The potential role of case managers in monitoring and controlling the quality and appropriateness of services for their clients is discussed at the end of the section. On Lok Senior Health Services, a San Franciscobased service delivery system, is an example of an agency that provides most services directly and has
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Chapter 5-Concerns About the Quality and Appropriateness of Services l 191 an internal quality assurance process to monitor and control quality (940). 15 Clients or their families make the decision to receive services from On Lok, but once that choice is made, On Lok assumes responsibility for quality of care. Pennsylvanias Long-Term Care Assessment and Management Program (LAMP) is an example of a program that contracts with community agencies to provide services for its clients and has procedures for monitoring and controlling the quality of those services (652). 16 LAMPs clients are elderly people who are eligible for Medicaid-funded nursing home care but choose to remain at home. The State of Pennsylvania designates local agencies (primarily AAAs) as LAMP sites to provide a comprehensive assessment, develop of a plan of care, and arrange and monitor services for each client. In turn, the LAMP sites contract with community agencies to provide services. Contracts between LAMP sites and community agencies that provide services for LAMP clients include many provisions related to quality (872). For example, the fiscal year 1987 contract between the Allegheny County LAMP site and the Visiting Nurse Association (VNA) of Allegheny County specifies services the VNA must provide; that the VNA must be able to respond to emergency requests within 24 hours; and that the VNA must have certain staff, an orientation program, a method for certifying employee participation in continuing education, and an internal quality assurance program. Staff must be licensed or certified as appropriate, and the agency must be certified by Medicare and Medicaid and accredited or eligible to be accredited by JCAHO, NLN, or the FHHC. Ohios Pre-Admission Screening System Providing Options and Resources Today (PASSPORT) program is like LAMP in that it provides case management and a package of services for people who are eligible for nursing home care but choose to remain at home (622). 17 The agencies that administer PASSPORT at the local level contract with other agencies to provide services for PASSPORT clients. Their contracts include numerous provisions to ensure the quality of services, including standards developed for many different kinds of service providers (32,623). The PASSPORT programs standards for homemaker services are shown in figure 5-3. Illinois Community Care Program (CCP) funds homemaker, chore, and adult day services for about 25,000 elderly clients through contracts with more than 200 community agencies, called vendors (51). 18 Clients may select a service provider, but it must be one of the vendors. The State of Illinois evaluates the performance of each vendor annually, using a 90-item review instrument that encompasses many aspects of quality and appropriateness. Vendors found to provide inadequate services are terminated from the program. LAMP, PASSPORT, and CCP are State programs that go far beyond their States licensing requirements, if any, and any relevant Medicare and Medicaid conditions of participation in their requirements for contractors. People who receive publicly funded services through different programs in the same States may not receive the same quality of care as clients of these programs. New Jersey has taken a different approach. New Jersey s Medicaid agency requires community agencies that provide personal care or homemaker services to be accredited in order to be reimbursed for services to Medicaid patients. Since 1986, the Commission on Accreditation for Home Care, an organization that is independent of the State has accredited these agencies, based on uniform standards and an on-site inspection (168). As of August 1988,45 agencies had applied for accreditation: 24 of these received accreditation; six were denied accreditation (primarily because of poor documentation, lack of evidence of appropriate supervision, or inadequate staffing); 10 were deferred and may reapply; and five withdrew their applications (430). New Jersey accepts accreditation by the Foundation for Hospice and Home Care (FHHC) in lieu of accreditation by the Commission, and 9 agencies have been accredited in that way. In Tulsa, Oklahoma, five local sources of funding for home health aide, homemaker, companion, and chore services have pooled their funds and establsFor more information about On bk, see ch. 8. IGFor more info~tion about Pennsylvanias LAMP progr~ see ch. 7. ITFor more information about Ohios PASSPORT pro~~ see ch. 7. ISFor more information about Illinois COmmU@ Care ~OgI= (CCp), se ch. 7.
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192 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias I. II. III. IV. v. VI. VII. Figure 5-3-The Ohio PASSPORT Programs Standards for Homemaker Services Homemaker Services Standards Homemaking services are provided by a homemaker who has met the education and training requirements for the PASSPORT program. The homemaker provides timely services, maintains a safe and clean environment and is sensitive to the client and familys needs. The homemaker performs tasks and duties according to the service care plan. The homemaker prioritizes and organizes tasks to achieve goals outlined on the care plan. The homemaker understands that client information is privileged knowledge. The homemaker holds all information in confidence. Homemaking tasks assigned are performed under the supervision of the homemaker supervisor. The homemaker demonstrates knowledge and skills to perform assigned tasks, The homemaker recognizes changes in client conditions and behavior and reports and records according to PASSPORT and agency procedures. The homemaker participates as a health care team member and is responsible for communicating with other professional disciplines as appropriate. SOURCE: R. Applebaum, S.J. Atchley, R. McGinnis, et al., A Guide To Ensuring the Quality of In-Home Care: Final Report of Ohios QualityAssurance Project (Oxford, OH: Miami University, 1988). lished a joint process to contract for these services. 19 The five funding agencies have formal procedures for monitoring the quality of the services provided by the contractor. Those procedures include sending questionnaires to local hospitals, clinics, and other referral sources to determine their satisfaction with the contractors services. Client satisfaction with the contractors services is also assessed by using a standard list of questions (see figure 5-4). This list of questions is used to interview about 10 percent of the agencies clients annually (556). In 1987, Senior Care Network, a private hospitalbased case management agency in Pasadena, California, began a comprehensive program to monitor and control the quality of services to which it refers clients (795). Senior Care Network combines four case management programs: two of the programs contract with service providers, and two do not, but all four participate in the quality assurance program. Quality is monitored through quarterly meetings between the service providers and program staff; annual reevaluations; monthly client home visits by case managers; visits by program staff to the provider agencies; and vendor incident reports that often concern no-shows or late arrival by home makers and nurses aides. If service providers accumulate a record of more than 5 percent noshows, case managers stop using that provider until the problem is corrected. These models of service delivery, in which the quality of services is monitored and controlled by the agencies that provide, pay for, and/or arrange the 19 The Tulsa Long-Term Care Management Authority, an outgrowth of the five-agency effort described here, is discussed in ch. 7.
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Chapter 5--Concerns About the Quality and Appropriateness of Services l 193 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. Figure 5-4-Questions Used To Evaluate Client Satisfaction in Tulsa, Oklahoma Client Satisfaction Questionnaire Read each statement below. Circle the response that is most true. There are no right or wrong answers. No one from (home care agency) will see your responses. Your responses will not affect your services. If you wish, the interviewer will read the statements aloud. I am comfortable with my worker from (home care agency) and I look forward to him or her coming to my house. NEVER SOMETIMES USUALLY ALWAYS If I have a problem or question about services I would be comfortable talking about it with my worker. NEVER SOMETIMES USUALLY ALWAYS If I had a problem I could not solve with my worker, I would be comfortable going to the supervisor. NEVER SOMETIMES USUALLY ALWAYS My worker knows what to do and does it with little or no supervision from me. NEVER SOMETIMES USUALLY ALWAYS The worker provides the services I expect. NEVER SOMETIMES USUALLY ALWAYS The worker finishes the job he/she is supposed to do. NEVER SOMETIMES USUALLY ALWAYS The worker takes longer than necessary to do the job. NEVER SOMETIMES I can depend on my worker to arrive NEVER SOMETIMES The worker does not perform tasks 1 NEVER SOMETIMES I help decide what services I receive NEVER SOMETIMES USUALLY ALWAYS on time. USUALLY ALWAYS can do myself. USUALLY ALWAYS in my home. USUALLY ALWAYS I am notified in advance if my worker will be late or cannot come. NEVER SOMETIMES USUALLY ALWAYS SOURCE: N.L. Mumma, Quality and Cost Control of Home Care Services Through Coordinated Funding, Quality Review Bulletin 13(8):271-278, 1987.
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194 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias services, have considerable appeal, given the problems people face in obtaining accurate information about the quality and appropriateness of services otherwise. These models appear to respond to concerns raised in this chapter about families and other informal caregivers who are not able to obtain information about the quality and appropriateness of services themselves and people with dementia who have no informal caregiver to select services for them. None of the programs described here is dementiaspecific. The Medicare Alzheimers Disease Demonstration that is being implemented at eight sites nationally requires each site to offer clients with Alzheimers disease a range of in-home and community services (504). The sites are not required to contract for services, but that is an option. OTA does not know whether any of the sites have developed methods for monitoring and controlling the quality of contracted services or what methods of quality assessment and assurance will be used for brokered services. Procedures for Involving Patients and Families in Monitoring and Controlling the Quality of Services Giving patients and families greater control over the services they use is an approach that some agencies use to address concerns about the quality and appropriateness of services. This approach can be implemented through a variety of mechanisms, some of which have been discussed earlier: involving patients and families in developing the plan of care; having patients and families monitor services they receive; using patient and family satisfaction as indicators of quality; providing an effective grievance mechanism by which complaints from patients and families are received and acted on; giving patients and/or families control over the funds to pay for services; and involving patients and families in the overall design and evaluation of programs that provide services for them (735,919). With the exception of patient and family monitoring of services, each of these mechanisms provides a way for patient and family values and preferences to influence the services they receive. In the case of people with dementia, it is probably more often the family than the patient who is actively involved in planning and evaluating services. As discussed earlier, the family can be seen either as representing the values and preferences of the patient in this context and/or as representing its own values and preferences. Patient monitoring of services has been implemented formally in Ohios PASSPORT program. Once a clients plan of care is developed, the client is given a checklist that indicates what services are to be provided and tells the client to call the case manager if specific problems arise (see figure 5-5). Whether planned services are actually received i.e., whether a home health aide or homemaker shows up and does what he or she is supposed to do--is clearly a component of quality. Formal reporting mechanisms like Ohios checklist offer a promising approach for monitoring it. Many families informally monitor the quality of services provided for elderly relatives at home or in a nursing home (84,209,928). OTA is not aware of any research on the validity of families reports about receipt or nonreceipt of services. OTAs literature review on patient satisfaction as an indicator of quality found that patients reports about what medical services they receive are highly accurate (832). Having patients and families report on receipt of services transfers only a small amount of control to them. Another approach that has rarely been implemented in publicly funded programs for elderly people but effectively transfers much more control to them, is giving them funds or vouchers to purchase services. Family Survival Project, a San Francisco-based agency for brain-impaired adults, has implemented this approach in a program that gives family caregivers vouchers to purchase home care services. 20 Ths family is regarded as the employer of the service provider. This approach allows families to select home care workers who are acceptable to them, and Family Survival Project has encountered few problems with it (403). ~or more information about Family Survival Projecq see ch. 8.
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Chapter 5--Concerns About the Quality and Appropriateness of Services l 195 Figure 5-5--Checklist Given to Clients in Ohios PASSPORT Program Client: Date: Case manager: Telephone: Instructions: Personal Care Elimination Bath Client to Oral care Client to Shampoo Client to -. Shave Skin care Foot/nail care Dress Mobility Transfers Walking Exercise Assistive device toilet commode bedpan Homemaking Tasks Kitchen cleaning Bathroom cleaning Living room cleaning lncontinent care Bedroom cleaning Ostomy care Change bed linens Empty commode Grocery shopping Errands Trash removal Nutrition Accompany to doctors Meal planning Breakfast Lunch Dinner Snack Feed client Home delivered meals PLEASE CALL CASE MANAGER IF: WORKER FAILS TO SHOW UP n WORKER FAILS TO PERFORM DUTIES n THEFT OR ABUSIVE CARE YOU WILL NOT BE HOME FOR SERVICE **SIGN SERVICE AUTHORIZATION FORM ONLY FOR TH E EXACT HOURS WORKED. SOURCE: R. Applebaum, S.J. Atchley, R. MoGinnis, et al., A Guide To Ensuring the Quality of ln-Home Care: Final Report of Ohios Quality Assurance Project (Oxford, OH: Miami University, 1988).
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196 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias In 1983 and 1984, the same approach was used in a Wisconsin demonstration project known as the Consumer-Directed Services Initiative (CDS) (919). Wisconsins CDS provided participants or their families with vouchers to purchase services. The 70 participants included individuals of all ages with chronic disabilities who were eligible for nursing home care. Several of them were Alzheimers patients. Participants had a service coordinator whose role was to ensure consumer direction: Unlike the traditional case manager who is accountable to a service-providing agency, the service coordinator. is directly responsible to the consumer. It is the consumer who decides what services are needed and how they should be provided. The service coordinator uses his or her knowledge of the service system and of the rights and entitlements of the disabled consumer to explore options which the consumer can choose among (919). Wisconsins CDS demonstration project concluded that giving people vouchers and the opportunity for choice was an empty gesture unless they were also given information about available service options, training in how to bargain with and influence providers, and support for doing so (919). The underlying assumption of the project was that the client was the boss, with the power to hire and free, and the provider was expected to carry out duties according to the clients preferences. Many clients and providers had difficulty with this employer/ employee relationship. Expectations differed about what the provider would do; there were personality conflicts; and some providers found it difficult to respect the clients preferences about how he or she wanted services performed. For most clients with Alzheimers disease, Wisconsins CDS demonstration project relied on the family to make decisions about services for the patient (919). The service coordinators who worked with these patients and families frequently had difficulty in deciding when, if ever, the values, preferences, and interests of the family should take precedence over the values, preferences, and interests of the patient and determining, in effect, who is the client (919). 21 Case managers, health care and social service professionals, and others are sometimes ambivalent about giving patients or families control over services, partly because doing so challenges the concept that it is professionals that can and should evaluate client needs and prescribe appropriate treatment (31 1,737). On the other hand, some are justifiably concerned about the possibility that poor care will be provided or that the patients needs will be neglected in such an arrangement. Family Survival Project monitors intermittently services purchased through the voucher program. In Wisconsin, the CDS service coordinator provided ongoing monitoring. What Role Can Case Managers Play in Monitoring and Controlling Quality? Many commentators have suggested that case managers or a case management agency could monitor and control the quality of services generally (48,175,230,386,737,877). In 1987, the Delegate Assembly of the American Bar Association passed a resolution on home care that said, in part: Experimentation with case management systems is widespread, but the current focus on case management centers largely on its potential to control costs. It may also offer tremendous potential as a tool for quality assurance and monitoring (19). Case managers and case management systems do not automatically monitor and control quality. Case managers are employed by virtually all the agencies discussed in this report. Their functions vis-a-vis quality vary greatly, depending in large part on the organization, funding, sponsorship, and other characteristics of the agency that employs them. Case management agencies also differ in all these respects, and their current and potential ability to control quality of care also differs. A recent review of the experiences of case managers in the $10 million National Long-Term Care Channeling Demonstration illustrates some of these differences (33). 22 The Channeling Demonstration, which was funded by the U.S. Department of Health and Human Services from 1980 to 1985, took place in 10 sites: in 5 sites, the case managers had funds to purchase services, and in 5 other sites they had only very limited funds. Case managers in 21 For further discussion of the issue of who is the client of an agency or program that links people with dementia to semices, s~ ch. 4. zz~e c~e~g demonstration is discussed further inch. 7.
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Chapter S--Concerns About the Quality and Appropriateness of Services l 197 both types of sites had difficulty monitoring the quality of homemaker and personal care services received by their clients. Some sites had contracts with homemaker/home health aide agencies, and at those sites, procedures for monitoring quality and responding to inadequate services were detailed in the contracts. At sites that did not have contracts with service providers, procedures for monitoring quality and responding to problems were less structured and less formal. Sites that had funds to purchase services used the threat of withholding payment to pressure providers into improving their services. That option was not available to sites that did not have funds to purchase services. These findings from the Channeling Demonstration and the discussion earlier in this chapter about case managers role in providing families and others with information about the quality and appropriateness of services suggest that it is not case managers or case management per se that can monitor and control quality but rather case managers in an agency or service delivery system that has explicit procedures for this purpose. Policymakers should not assume, therefore, that simply involving case managers in a linking system will automatically guarantee that the linking system will monitor and control the quality of services. CONCLUSION Families and other informal caregivers need accurate information about the quality and appropriateness of services provided by different agencies and individuals. In the public debate about services for people with dementia, the need for better information about quality and appropriateness has been overshadowed thus far by concerns about insufficient availability of services. Anecdotal evidence indicates, however, that some patients and families who need services do not use them because they are afraid of poor-quality care. For them, availability of services is not the only concern. Books, pamphlets, and articles about services for people with dementia suggest that caregivers are responsible for selecting good services and that information about quality and appropriateness-on which they could base their selectionis available from a variety of sources. OTAs review of those sources indicates that although the necessary information is sometimes available from many of the sources, it is not consistently available anywhere. Moreover, referrals to service providers are sometimes misleading. Patients and families who are given the name of a service providerparticularly by a health care or social service professional, hospital discharge planner, or case manager-may assume that the referral is a recommendation based on that individuals knowledge of available service options. That assumption may or may not be correct. To expect families who are severely stressed by the care of a relative with dementia to call many individuals to ask for information about quality; to locate, read, and understand facility inspection reports; or to correctly guess the basis on which a referral is made by a physician, discharge planner, case manager, or other individual is naive. To expect this of a person with dementia is even more so. The chapter points out that the development of criteria to evaluate the quality and appropriateness of services for people with dementia is probably the most important step that could be taken to enable a federally mandated linking system to connect people with dementia to the best available services. It is not the function of the linking system to develop such criteria, however. Developing comprehensive criteria to evaluate the quality and appropriateness of services for people with dementia will take the combined efforts of government agencies, private agencies, and voluntary associations. It will also take time. In the meantime, private agencies and voluntary associations could solicit caregivers opinions about services they have used for a person with dementia and make that information available to other people who are trying to select good services. In addition, existing regulatory programs could be modified to collect and make available information that would be useful to people who are trying to select good services. Neither of these approaches would result in comprehensive criteria for evaluating the quality and appropriateness of services for people with dementia. These approaches would provide information that is not available now, however, and might lessen the problems families and others face in selecting services. A federally mandated linking system could not select services for its clients on the basis of the quality and appropriateness of the services without criteria for evaluating quality and appropriateness, but the analysis in this chapter suggests that there are several types of information the system could
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198 Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias provide caregivers of people with dementia to help them select good services. First, and most basic, the linking system could inform caregivers that there are differences in the quality and appropriateness of available services. Second, the system could inform caregivers about what, if any, information it will provide about the quality and appropriateness of services and about any factors that restrict the system and its employees from giving its clients accurate information about the quality and appropriateness of services or making referrals on the basis of quality. Third, the system could inform clients and their families about which service providers are licensed, certified, and/or accredited. Fourth, the system could give caregivers any available information about the quality of services, including, for example, information compiled by a voluntary association about families and others opinions about services they have used for a person with dementia. If Congress established a national system to link people with dementia to services, Congress could mandate that the linking system provide its clients with any or all of these types of information. None of these types of information will solve the problem of how to ensure that people with dementia who are not capable of selecting services for themselves and have no relative or friend to help them are connected to the best available services. To solve that problem would require that the linking system select services for them on the basis of the quality and appropriateness of the services, which, as noted above, would require the development of criteria to evaluate quality and appropriateness. In the absence of the necessary criteria, Congress could mandate that the system refer clients only to licensed, certified, and/or accredited agencies and service providers; for reasons discussed earlier in this chapter, however, such a requirement would probably have only a very limited impact on the quality and appropriateness of the services these clients would receive. Congress could require that the linking system control the quality of services to which it refers clients by contracting with providers that meet certain specified standards, but the standards do not exist yet. The chapter has discussed the need for a thorough analysis of the legal issues that are raised when an agency or system that links people to services provides its clients with information about the relative quality of available services or selects services for its clients on the basis of information about the quality and appropriateness of the services. If Congress established a national linking system for people with dementia, Congress could require the U.S. Department of Health and Human Services to conduct or contract for such an analysis. Congress could also immunize the linking system from legal liability for good faith efforts to disseminate information about the quality of services. Finally, the chapter recognizes the insufficient availability of services in general, and the difficult problems that it creates for anyone trying to arrange good care. On the other hand, there are some good services in almost all communities and important gradations in quality among services that might be considered adequate. Making available information about quality supports the providers of good services and encourages others to improve, even within existing resource constraints.
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Chapter 6 Linking Veterans with Dementia to VA and Non-VA Services
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CONTENTS Page INTRODUCTION . . . . . . . . . . . . . . . 201 VA HEALTH CARE AND HEALTH-RELATED SERVICES THAT MAY BE HELPFUL FOR VETERANS WITH DEMENTIA . . . . . . 202 Acute Care Services . . . . . . . . . . . . . . 203 Extended (Long-Term) Care Services . . . . . . . . . . 203 Special VA Programs of Particular Relevance for Veterans With Dementia . . 204 VA Education, Training, and Research Programs . . . . . . . . 206 s ummary and Implications . . . . . . . . . . . . . 208 PROBLEMS IN LINKING VETERANS WITH DEMENTIA TO VA SERVICES 209 The Complexity of the Eligibility Criteria for VA Services . . . . . 210 The Difficulty of Determinin g Whether a Veteran With Dementia Will Receive VA Services . . . . . . . . . . . . 213 The Lack of Information About VA Services . . . . . . . . . 214 Summary and Implications . . . . . . . . . . . . . 215 PROBLEMS IN LINKING VETERANS WITH DEMENTIA TO NON-VA SERVICES . . . . . . . . . . . . 216 VA Mechanisms for Linking Individual Veterans to Non-VA Services . . . 216 Problems unlinking Individual Veterans to Non-VA Services . . . . 217 VA Mechanisms for Coordinating VA and Non-VA Services . . . . . 218 Problems in Coordinating VA and Non-VA Services . . . . . . . 219 Summary and Implications . . . . . . . . . . . . . 219 CONCLUSION . . . . . . . . . . . . . . . . 220 Boxes Page 6-A. The Dementia Study Unit at the E.N. Rogers Memorial Veterans Hospital in Bedford, Massachusetts . . . . . . . . . . . . 205 6-B. The Alzheimers Centerat the VA Medical Center in Coatesville, Pennsylvania . . . . . . . . . . . . . 206 6-C. The Wives Support Group at the E.N. Rogers Memorial Veterans Hospital in Bedford, Massachusetts . . . . . . . . . . . . 207 6-D. The Sharing Agreement Between a VA Medical Center and an Area Agency on Aging in West Virginia . . . . . . . . . 219 6-E. The VA/AAA Council of the Chicago Area VA Medical Centers and Three AAAs . . . . . . . . . . . . . . 220
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Chapter 6 Linking Veterans With Dementia to VA and Non-VA Services INTRODUCTION The U.S. Department of Veterans Affairs (VA) operates the largest health care system in this country (509,837) and provides many of the kinds of services that may be needed for a person with dementia. 1 Only a small proportion of elderly American women are veterans, but, as of 1990, more than half of all American men over age 65 are veterans, and by the year 2000 that proportion will increase to two-thirds (854). The VA is a potential source of services for them. On the other hand, not all veterans with dementia are eligible for VA services, and the VA does not provide all of the kinds of services that may be needed for a person with dementia. Some people believe that the VA should provide the full range of health care, long-term care, and other services that are needed for all veterans, including veterans with dementia. Others believe that the VA should provide at least all the health care services that are needed for all veterans. Still others believe that for financial and other reasons, the VA should not or cannot provide all needed services for all veterans; they believe that the VA should concentrate its resources on providing certain kinds of services-usually acute medical services-and that eligibility for VA services should be limited to certain types of veteransusually veterans with service-connected disabilities and veterans with low income. 2 The debate about what services the VA should provide and for whom is not the topic of this chapter. The chapter assumes that although the amount and kinds of services provided by the VA and the eligibility criteria for VA services will undoubtedly change from time to time, it is unlikely for a variety of reasons that the VA will ever provide all the services that may be required for all veterans with dementia. Therefore, many veterans with dementia will need to use non-VA services as well. The chapter focuses on problems in the process by which veterans with dementia are linked to VA services for which they are eligible and problems in the process by which they are linked to non-VA providers for services they cannot obtain from the VA. Over the past few years, the Office of Technology Assessment (OTA) has heard complaints from some families and other informal caregivers of people with dementia about the difficulty of obtaining VA services for a veteran with dementia or even finding out what services are available from the VA for veterans with dementia. At the same time, OTA has heard from other families and informal caregivers about good services provided by the VA for individuals with dementia. Some of the caregivers who have reported that their relative or friend with dementia received good services from the VA say that they just happened to learn about the VA services and that they had not expected that the services they needed for the person with dementia would be available through the VA. Conversely, some families and others who have complained to OTA about the difficulty of obtaining VA services for an individual with dementia have reported that they did expect to receive the services they needed from the VA, and that they were disappointed and angry when those services were not available. OTA has also heard about families of people with dementia who have experienced long, frustrating waits during which they did not know whether the person with dementia would receive needed services from the VA. Peoples diverse experiences in applying for and receiving VA services are illustrated in the results of a 1986 mail survey of families and other informal caregivers of people with dementia (926) commissioned by OTA for its previous assessment, Losing a Million Minds: Confronting the Tragedy o f Alzheimers and Other Dementias. Only a few of the 569 caregivers who responded to the 1986 survey reported that they had ever applied to the VA for services for their relative or friend with dementia. Of those that had applied, 45 percent said the person with dementia did not receive the needed services; in two-thirds of those cases, the main reason given was that the individual-although a veteran-did not have a service-connected disability. For the 55 IFor a list of semi~s that may be needed for a person with dementiaj see table 1-2 inch. 1. z~e eligibility critefia for VA health care and health-related services are discussed later in this chapter. Veterans with semiee-eonmcted disabilities-i.e., disabilities that were incurred or aggravated during military service-have priority over other veterans in the reeeipt of VA serviees.
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202 Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias percent that did receive VA services, 80 percent of the caregivers reported the services were good or excellent; 10 percent reported the services were average; and 10 percent reported the services were poor. One caregiver removed the veteran from the VA facility due to poor care. The survey did not ask the caregivers whether they had expected that the individual they were caring for would receive VA services or how they were linked to the VA services. This chapter describes the VA health care and health-related services that may be helpful for an individual with dementia. In the course of this study, one OTA staff member visited several VA medical centers that are providing high-quality services of various kinds for veterans with dementia, and some of those services are described. The chapter discusses the reasons why some services that may be needed for an individual with dementia are not available from the VA and why some veterans with dementia are not eligible for VA services. It describes and analyzes existing problems in linking veterans with dementia to VA services for which they are eligible and to non-VA providers for services they need but cannot obtain from the VA. Many of the problems discussed in this chapter have been addressed previously by the VA, the Senate and House Committees on Veterans Affairs, and others, with respect to services for elderly veterans (641,820,854,855,859). In the early 1980s, for example, the VA and Harvard University collaborated in a project to develop options for increased coordination and sharing of VA and non-VA resources to improve access to appropriate care for older veterans (721). One product of that collaborative effort, a book entitled Older Veterans: Linking VA and Community Resources, raises many of the same problems discussed here with respect to linking veterans to VA and non-VA services (901a). Certain aspects of the service needs of people with dementia and the VAs eligibility requirements make these problems particularly difficult for veterans with dementia, however. According to VA estimates, there are now about 400,000 veterans with dementia (76). Although the total number of veterans of all ages is decreasing, the number of older veterans is growing rapidly (854). Since the prevalence of dementia increases with age, the growth in the number of older veterans will result in an increase in the number of veterans with dementia. The VA estimates that there will be 50,000 new cases of dementia among veterans in 1990, and that the number of new cases of dementia among veterans will increase to 100,000 per year by the year 2000, before leveling off (76). By the year 2000, there will be 600,000 veterans with dementia (76). This large number of veterans with dementia is likely to create demands on the VA for a variety of services, and to increase the need for effective methods of linking veterans with dementia to VA and non-VA services. If Congress mandated the establishment of a national system to link people with dementia to services, as discussed in this OTA report, the VA could take one of two possible roles in relation to the system. On the one hand, the VA could assume the sole responsibility for linking veterans with dementia to both VA and non-VA services. On the other hand, the responsibility for linking veterans with dementia to services could be split between the VA and the non-VA linking system; if this were done, the VA would retain the responsibility for linking veterans with dementia to VA services, and the non-VA linking system would assume primary responsibility for linking veterans with dementia to non-VA services. The pros and cons of these two options are discussed in chapter 1. This chapter provides information relevant to evaluating the two options. VA HEALTH CARE AND HEALTH-RELATED SERVICES THAT MAY BE HELPFUL FOR VETERANS WITH DEMENTIA The VA provides health care and health-related services through the Veterans Health Services and Research Administration (VHS&RA), previously called the Department of Medicine and Surgery. Administratively, the VHS&RA encompasses 7 Regions, 27 Districts, and 172 VA medical centers (676). Through the VHS&RA, the VA provides acute and extended (long-term) care services for veterans in VA hospitals, nursing homes, domiciliary care facilities, outpatient clinics, and in the veterans home. Also through the VHS&RA, the VA pays for acute and extended-care services for veterans in non-VA hospitals, nursing homes, and board and care facilities and through non-VA physicians and other health care professionals. In fiscal year 1987, 1.4 million veterans were treated in VA hospitals, nursing homes, and domiciliary care
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Chapter 6--Linking Veterans With Dementia to VA and Non-VA Services l 203 facilities, and 19.8 million veterans were treated on an outpatient basis by VA staff (857). In that same year, the VA paid for the treatment of 94,000 veterans in non-VA hospitals, nursing homes, and board and care facilities and for 1.8 million outpatient visits to non-VA physicians and other health care professionals. This section describes the health care and healthrelated services provided or paid for by the VA that may be helpful for veterans with dementia. In addition to providing and paying for health care and health-related services, the VA also provides education and trainin g for health care professionals and pays for biomedical and health services research. Some of the VAs training and research initiatives that pertain to dementing diseases and the care of people with dementia are also described. Not all the services described in the following sections can be obtained by all veterans with dementia for a variety of reasons discussed later in this chapter. These reasons include the eligibility criteria for the services and the lack of sufficient VA services in relation to the large number of veterans who need them. In addition, most VA health care and health-related services are furnished at the 172 VA medical centers. As a result, VA services are, in practice, more readily accessible by veterans who live near one of the medical centers than by other veterans. VA services that are only provided by certain VA medical centers are more readily accessible by veterans who live near those centers. Acute Care Services Acute medical care in the VA is provided by 172 VA hospitals, 235 VA outpatient clinics, and numerous non-VA hospitals and physicians (815,837). For veterans with dementia, inpatient and outpatient acute medical services are important for the management of acute illnesses and acute episodes of chronic illnesses, both of which can exacerbate the cognitive deficits caused by a dementing illness. Acute care facilities and services are also important for diagnosis and assessment. VA hospitals and outpatient clinics typically employ physicians with the medical specialties that may be needed to diagnose diseases that cause dementia. In addition, VA hospitals and outpatient clinics employ many other health care professionals, including nurses, psychologists, social workers, and other therapists, who frequently function as a multidisciplinary team and do or could provide comprehensive, multidisciplinary assessments for veterans with dementia. Extended (Long-Term) Care Services A variety of long-term care services, called extended-care services in the VA, are available at many VA medical centers. Most of these extendedcare services are provided in institutional settings, such as nursing homes and domiciliary care facilities, but some are provided in noninstitutional settings. Both types of extended-care services are potentially helpful for some veterans with dementia. Institutional Extended-Care Services The VA provides or pays for institutional extendedcare services that may be helpful for veterans with dementia through at least five programs. One of these programs provides extended hospital care in intermediate medical care beds-i. e., VA hospital beds that are used for veterans who require less than hospital and more than skilled nursing care. A second program, the VA nursing home program, provides skilled nursing care in VA nursing homes. In fiscal year 1989, this program served over 27,000 veterans in 118 VA nursing homes (837). The VA nursing homes had a total of 12,530 beds and an average daily census of 11,500. A third program that provides institutional extendedcare services for veterans is the community nursing home program, which permits each of the 172 medical centers to place veterans in non-VA nursing homes that provide either skilled or intermediate level care under contract with the VA. In fiscal year 1989, 3,675 community nursing homes cared for 32,000 veterans through this program (837). The average daily census was 9,305. A fourth program that provides institutional extended-care services is the domiciliary care program that is intended for ambulatory veterans who need health-related services but do not require hospitalization or the skilled or intermediate level of care provided in the VA or community nursing home programs. In fiscal year 1989, 18,000 veterans received care in the VAs 29 domiciliary care facilities, which had an average daily census of 6,000 (837). Finally, institutional extended-care services are provided by State Veterans Homes that receive a per diem grant from the VA for the care of eligible veterans. State Veterans Homes can also receive
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204 Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias VA grants to build or acquire new facilities; funding is available for up to 65 percent of construction costs. In fiscal year 1989, there were 55 State Veterans Homes in 36 States (837). These State Veterans Homes had a total of 19,000 beds, including nursing home and domiciliary care beds, as well as some hospital beds. Noninstitutional Extended-Care Services The VA provides or pays for three programs that offer noninstitutional extended-care services that may be helpful for some veterans with dementia: hospital-based home care, adult day health care, and community residential care. The hospital-based home care program provides in-home medical, nursing, rehabilitative, and other services for homebound veterans. A multidisciplinary team furnishes the services and manages the veterans care. The hospital-based home care program is highly medical in orientation; the provision of nonmedical support services is not permitted as part of the program. In fiscal year 1989, 72 of the 172 VA medical centers had hospital-based home care programs, and 15,700 veterans were served by these programs (837). The adult day health care program was established as a demonstration program by Public Law 98-160 and provides a medical model of adult day services (508,837). The program, which first admitted patients in 1985, provides health care, health maintenance, and rehabilitative services for veterans. In fiscal year 1989, 15 VA medical centers were operating adult day health centers with a total average daily census of 318 (837). In addition, 22 VA medical centers were authorized to contract with community agencies for adult day health care services for veterans, and a total of 396 veterans received contracted adult day health services (837). Lastly, the community residential care program provides room, board, personal care, and supervision to veterans who are not in need of hospital or nursing home care but who cannot live independently. Typically these veterans do not have an informal caregiver. After the VA locates a suitable home and the veteran is placed, VA social workers and nurses provide in-home treatment and case management. In fiscal year 1989, 127 of the 172 VA medical centers had a community residential care program, and the programs provided placement for 11,100 veterans in 2,900 homes (837,917). Special VA Programs of Particular Relevance for Veterans With Dementia In addition to the acute and extended-care services just described, some VA medical centers have other programs that are particularly relevant for veterans with dementia and their caregivers. The programs are Geriatric Research, Education, and Clinical Centers; Geriatric Evaluation Units; special care units for veterans with dementia; respite care; caregiver support groups; and special informational materials. Geriatric Research, Educational, and Clinical Centers (GRECCS) were begun in 1975 to provide basic and clinical research and education and training for clinicians and researchers in the field of geriatrics. Each GRECC focuses on specific areas in geriatric medicine and typically provides care for veterans with diseases and conditions in those areas. As of 1989, there were 10 fully operational GRECCs, four of which were caring for at least some veterans with dementia (76). The sites for two additional GRECCs were selected in 1989, and the two sites received partial funding in that year (8,837). 3 For more than 10 years, the GRECC at the E.N. Rogers Memorial Veterans Hospital, in Bedford, Massachusetts, has been providing inpatient and outpatient care for veterans with dementia through its Dementia Study Unit. Box 6-A describes the services provided by the Dementia Study Unit. Geriatric evaluation units (GEUs) are hospital units that use a multidisciplinary team to assess elderly veterans and develop a coordinated plan of care for them. GEUs and their counterparts in non-VA hospitals are discussed in chapter 8, and the GEU at the VA Medical Center in Sepulveda, California, is described in box 8-Kin chapter 8. As of 1989, there were 87 GEUs in VA hospitals nationwide (917). GEUs usually consist of a group of VA hospital beds, typically from 4 to 20, that are set aside for comprehensive patient assessment. The objective of a GEU is to refine the diagnosis, treatment, and placement plans for older veterans, particularly those with multiple chronic diseases, remediable impairments, or psychosocial problems. The evaluation can take from 1 to 2 weeks or longer, depending on the complexity and severity of the veterans 3AltlKN@I tie total n~er of authorized GRECCS is 25, funds have been appropriated for Ody 12 G~CCS (8,508).
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Chapter 6-Linking Veterans With Dementia to VA and Non-VA Services l 205 Box 6-AThe Dementia Study Unit at the E.N. Rogers Memorial Veterans Hospital in Bedford, Massachusetts The Dementia Study Unit of the Geriatric Research, Education, and Clinical Center at E.N. Rogers Memorial Veterans Hospital provides inpatient and outpatient care for veterans with dementia and information and support for their caregivers. The Dementia Study Unit operates three 25-bed wards and is able to serve 75 veterans on an inpatient basis. The unit has an outpatient caseload of about 40 veterans. Many of the veterans served by the Dementia Study Unit have been diagnosed at one of the large teaching hospitals in Boston or by a private physician but have not received any followup care from those sources. According to the Dementia Study Units social worker, the caregivers of these veterans typically manage without assistance for as long as they can and are often physically and emotionally exhausted by the time they reach the VA. Since the VA is the last place these caregivers turn for help, many of them are seeking inpatient long-term care. They are encouraged to keep the veteran with dementia at home for as long as possible, however. When the veteran and his or her caregiver are first seen at the Dementia Study Unit, a multidisciplinary team---inc1uding a neurologist, a nurse, and a social worker-conducts a complete assessment. The neurologist performs a diagnostic evaluation. The nurse assesses the veterans physical limitations and functioning, and the social worker conducts a psychosocial evaluation. The assessment is almost always conducted on an outpatient basis. It usually involves several interviews with the caregiver and may involve a home visit. After the assessment, the veteran and his or her caregiver generally return to the VA for regularly scheduled outpatient visits during which the staff reassesses the veterans condition and provides information, support, and counseling for the caregiver. These visits also help familiarize caregivers with the inpatient setting and prepare them for the likely institutionalization of the patient later on. In between scheduled outpatient visits, the social worker maintains telephone contact with the caregivers, and the caregivers are encouraged to call the Dementia Study Unit as the need arises. The social worker considers his main role to be expanding the caregivers knowledge about dementia, informing them about available services, and helping them improve their coping skills. The social worker circulates a newsletter that contains information about VA and non-VA services. He also assists caregivers in arranging services. The Dementia Study Unit provides respite care for veterans treated on an outpatient basis. The veterans and their caregivers may use up to 2 weeks of respite care once every 3 months. Eventually, many of the veterans who are seen as outpatients are admitted to one of the inpatient wards as long-stay residents. For these veterans, the Dementia Study Unit provides medical and nursing care; physical, occupational, recreational, and music therapy; dental care; exercise programs; and other services. Support groups are provided for the caregivers of inpatients and outpatients. The Wives Support Group run by the Dementia Study Unit is described in box 6-C. SOURCES: J. Larkin clinical social worker, Geriatric Research, Education and Clinical Center, E.N. Rogers Memorial Veterans Hospital, Bedford, MA, personal communications, Aug. 3, 1988, and July 14, 1989; B. Seltzer, associate director for clinical services, Geriatric Research, Education, and Clinical Center, E.N. Rogers Memorial Veterans Hospital, Bedford, MA, personal communication Aug. 3, 1988; L. Volicer, K. Fabiszewski, Y. Rheume, et al., Clinical Management of Alzheimers Disease (Rockville, MD: Aspen Publications, 1988). condition. GEUs often provide comprehensive asthat most veterans who are admitted to special care sessments for veterans with dementia, but some GEUs do not admit veterans with severe, irreversible dementia, especially if the veterans dementia has been diagnosed and evaluated previously (394,869). VA special care units are inpatient care settings for veterans with Alzheimers disease and other dementing diseases. It is estimated that about 40 VA medical centers have special care units. Typically these units are comprised of intermediate medical care beds in a VA hospital. In 1985, VA special care units ranged in size from 18 to 46 beds (855). Evidence from several special care units indicates units remain there for the rest of their lives due to the general debilitated state of the veteran and the typically overburdened status of the caregiver at the time of admission (82,751). On the other hand, as discussed below, some and perhaps many VA special care units use certain beds on the unit for short-term respite care for veterans with dementia. Box 6-B describes the special care unit at the VA Medical Center in Coatesville, Pennsylvania. Respite care was offered by approximately 100 VA medical centers as of 1989 (837). In the VA, respite care is strictly limited to an institutional
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206 Confided Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias Box 6-BThe Alzheimers Center at the VA Medical Center in Coatesville, Pennsylvania The Alzheimers Center at the VA Medical Center in Coatesville, Pennsylvania, is the largest VA special care unit for veterans with dementia. The special care unit has 91 beds on 2 wards. The nursing staff consists of 13 RNs, 6 LPNs, 34 nursing assistants, and a nursing supervisor. Two physicians and one physician assistant provide medical care for residents on the two wards. The special care unit--like other VA special care units--is usually filled to capacity and has a waiting list. Admission to the unit almost always comes through the VA Medical Centers geriatric evaluation unit. The great majority of residents on the unit are male veterans, but as of May 1989, two of the residents were female veterans. One end of each ward is reserved for veterans with advanced conditions who are confined to a bed or a chair. The special care unit provides many services in addition to nursing and medical care, e.g., occupational therapy, speech therapy, music therapy, pet therapy, and exercise programs. It has an outdoor fenced-in area that residents are encouraged to use, and many of the residents participate in a horticulture program where they take care of plants and make floral arrangements. Residents of the special care unit who are ambulatory can take advantage of special outings--such as a May 1989 fishing trip. The unit also has activities that include family members, such as a Fathers Day picnic held in June 1989. The residents wives and other family members are en couraged to join the family support group that meets once a month for educational presen tations and gives family members an opportunity to share their experiences and feelings with one another. Many of the residents wives also perform volunteer activities on the special care unit. Sometimes veterans are transferred from the Alzheimer s Center to the VA hospital for acute medical cam. Since the special care unit is located in the VA medical center, transfers back and forth to the hospital can be accomplished with greater ease than they can in the non-VA health care sector. SOURCES: L. Swingler, medical social worker, Alzheimers (kiter, VA Medical Center, Coatesville, PA, personal communication, May 23, 1989, c. Curato, ward secretary, Alzheimers Center, VA Medical Center, Coatesville, PA, personal communication, May 24, 1989; L. Bristol, Alzheimers Center supervisor, VA Medical Center, Coatesville, PA, personal communication, May 26, 1989. setting, i.e., a VA hospital or nursing home. The Other VA medical centers have support groups for respite care is intended to provide short-term care for the veteran in order to relieve his or her primary caregiver. Each veteran can receive a maximum of 30 days annually, with each admission limited to a maximum of 14 days. OTA does not know how many VA respite programs serve veterans with dementia, but VA officials report that the implementing guidelines do not preclude serving veterans with dementia (480). At least one respite program designed specifically for veterans with dementia was instituted at the Palo Alto VA Medical Center in 1979 (64). The Dementia Study Unit at the GRECC in Bedford, Massachusetts, described in box 6-A, and the special care unit at the Coatesville, Pennsylvania VA Medical Center, described in box 6-B, both provide institutional respite care for veterans with dementia. Support groups for spouses and other caregivers of veterans with dementia are provided by some VA medical centers. Box 6-C describes a meeting of the Wives Support Group run by the Dementia Study Unit at the GRECC in Bedford, Massachusetts. caregivers of veterans with all kinds of disabilities. Still other VA medical centers encourage caregivers to participate in an Alzheimers Association or other non-VA support group. These support groups afford the caregivers an opportunity to share their experiences in coping with the illness and to give and receive emotional support from the other caregivers. Some VA medical centers have developed special informational materials for caregivers of veterans with dementia. One example is the VA Medical Center in Minneapolis, Minnesota, which has developed a series of booklets on topics of importance to caregivers of veterans with dementia, including What is Alzheimers Disease? The Role of the Caregiver, Managing From Day-to-Day, and Working With Bureaucracies. VA Education, Training, and Research Programs In addition to providing and paying for health care and health-related services for veterans, the VAs VHS&RA also has two other functions: providing education and training for health care professionals
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Chapter 6-Linking Veterans With Dementia to VA and Non-VA Services l 207 Box 6-C---The Wives Support Group at the E.N. Rogers Memorial Veterans Hospital in Bedford, Massachusetts One OTA staff member attended the August 3,1988 meeting of the Wives Support Group run by the Dementia Study Unit at the E.N. Rogers Memorial Veterans Hospital in Bedford, Massachusetts (see box 6-A). At the time of the meeting, with one exception, each of the husbands of the women who attended the meeting were long-stay residents of the Dementia Study Units inpatient wards. The remaining husband was enrolled in the Dementia Study units outpatient program and was being cared for at home by his wife, awaiting an opening on one of the inpatient wards. Of all the many stories that unfolded during the meeting of the Wives Support Group, the most striking was the similar scenario portrayed by each woman of her experience seeking help in the non-VA health care sector, which eventually ended with her finding out about the VAs special Alzheimers program completely by accident. Before finding out about the VA program, all but one of the wives had taken their husbands to the family doctor and were referred to a neurologist. All the wives said that after the neurologist confirmd the Alzheimers diagnosis, they did not receive any informa tion about what to do from there. One woman stated that she was actually relieved by the diagnosis, but they all admitted that Alzheimers was a difficult disease to come to terms with, and many said they felt abandoned by the non-VA health care system. The wives stories about how they found out about the VAs special Alzheimers program all included the common theme of having found the program by accident. One woman said that, by chance, she saw a TV program that mentioned the VA program. Another heard about the VA through a friend. A third woman had a daughter who had worked previously at the Bedford VA hospital, and another had seen a TV Guide listing on a memory program that talked about the Geriatric Research, Education, and Clinical Center at the VA hospital. Only one woman had learned about the program by contacting the VA directly. As noted above, only one member of the support group was still caring for her husband at home. She said that she was dependent on the support group for reassurance and could not imagine having to go through any more of the ordeal without the help of the support group. At one point, she tearfully explained how frightened she is when her husband, who is apparently much larger than she, becomes confused and agitated-all the while not hewing who she is. All the other wives understood. Another wife of a World War I veteran attempted to explain the tremendous guilt she felt when her husband was still at home and she needed help. She said she did not feel that she should bother her children to give her a hand Now, years later, she still feels guilty, despite the fact that her daughter, who attended the meeting with her, assured her that all her children wanted to help. The wives agreed that since they found the VA program, they were saved from an awful existence. The program offered them the solace, advice, coping mechanisms, and the services they needed to survive the time that their husbands were outpatients. The VA program gradually acquainted them with the inpatient unit and gave them a comfortable f amilarity when the time came to admit their husbands to the inpatient wards. SOURCE: Wives Support Group, Geriatric Research, Education, and Clinical Center, E.N. Rogers Memorial Veteran Hospital, Bedford, MA, Aug. 3, 1988. and sponsoring medical research. These two funcing about half of the physicians in this country, tions are important for veterans with dementia because some of the education and training and research programs focus on Alzheimers and related dementias. The VA conducts the largest education and training effort for health professionals in the United States and is the principal training resource in geriatric medicine (854,857). Annually, through affiliations with over 1,000 educational institutions, including schools of medicine, nursing, and other health professions, about 100,000 students, includreceive some or all of their clinical training through the VA (507). In fiscal year 1988, the VA supported about 8,350 full-time medical residency positions, with geriatrics among the areas receiving special emphasis (76). A significant number of nursing students receive VA scholarships for trainin g in geriatric/ gerontological nursing (831). Many of these individuals have contact with dementia-specific programs and/or veterans with dementia.
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208 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias Photo credit: Gretchen Kolsrud The VA Medical Center in Minneapolis, Minnesota, has developed a series of informational booklets for caregivers of people with dementia. As noted earlier, GRECCs provide training for clinicians in the field of geriatrics. The VA Interdisciplinary Team Training Program in Geriatrics also provides clinical training in geriatrics for students in various health disciplines, such as nursing, psychology, and social work, to develop knowledge and skills in providing interdisciplinary team care. In 1988, the Interdisciplinary Team Training Program in Geriatrics funded support for almost 200 health professionals from various disciplines (76). The VAs Office of Research and Development in the VHS&RA each year funds over 4,000 researchers with a budget of approximately $200 million (76). For fiscal year 1988, over $2.6 million of the VAs total research budget was devoted to research pertaining to dementia. In addition, VA researchers reported receiving another $2.9 million for dementiarelated projects from non-VA sources. Summary and Implications The preceding section has described many VA services that may be helpful for veterans with dementia and their caregivers, including some services specifically designed for veterans with dementia. That these services exist highlights the importance for veterans with dementia and their caregivers of effective methods by which they can be linked to VA services for which they are eligible. On the other hand, the information just presented makes it clear that the VA does not provide all the services that may be needed for veterans with dementia. Certain services, e.g., in-home respite care, are not provided by the VA at all. Other potentially helpful services are provided by some VA medical centers and not others. As of 1989, for example, approximately 100 of the 172 VA medical centers provided institutional respite care, and 15 of
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Chapter 6--Linking Veterans With Dementia to VA and Non-VA Services l 209 the 172 centers had adult day health care programs. One reason for the differences among VA medical centers in the services they provide is that VA medical centers have some discretion about which services they provide. 4 Institutional respite care is a service that each VA medical center has the option to provide. Another reason for the differences among VA medical centers in the services they provide is that Congress, faced with budget constraints, sometimes authorizes and/or funds the provision of certain services at only a few VA medical centers. Adult day health care is a program that only a few VA medical centers are authorized to provide. The great majority of VA health care and healthrelated services are provided at VA medical centers, which means that the services are more readily accessible by veterans who live near one of the medical centers. The 172 VA medical centers are not uniformly distributed across the country, and some have very large catchment areas (662,724). As a result, some veterans and their caregivers have to travel long distances to access VA services, and some may not be able to access VA services (481,662,823). This problem is exacerbated when the needed services are not provided by the nearest VA medical center. As noted earlier, some people believe that the VA should provide more services of various kinds, and other people believe that the VA cannot or should not provide more services. This OTA assessment does not address the question of what services the VA should provide. In the context of this assessment, the fact that the VA does not provide all the services that may be needed for veterans with dementia points to the importance of effective methods by which veterans with dementia can be linked to non-VA services. The fact that some veterans live too far from a VA medical center to access VA services underscores the importance of those methods. Many of the extended-care services provided by the VA are institutional or residential in nature. With respect to the care of elderly veterans in general, the VA has been criticized for overemphasizing institutional services and underemphasizing in-home and other noninstitutional services (8,48 1,509,662). These same criticisms are generally relevant to the care of many veterans with dementia. On the other hand, institutional and residential care services are appropriate for some veterans with dementia who have no relative or other informal caregiver to help them and for some veterans with dementia whose relatives and friends are unable to take care of them. 5 That the VA provides primarily institutional and residential extended-care services emphasizes the importance of effective methods of linking veterans with dementia who need such services to the VA and, conversely, the importance of linking veterans with dementia who need services not available from the VA to non-VA service providers. The VA is sometimes also criticized for overemphasizing medically oriented services and underemphasizing nonmedical, supportive services (8). Veterans with dementia need both medical and nonmedical services. Some people believe that the VA should provide more nonmedical, supportive services. In the context of this OTA assessment, however, the fact that the VA provides more medically oriented services reinforces the need for effective methods of linking veterans with dementia who need such services to the VA and effective methods of linking veterans with dementia who need nonmedical, supportive services to non-VA providers if these services are not available from the VA. PROBLEMS IN LINKING VETERANS WITH DEMENTIA VA SERVICES Some people, including some veterans and their families, believe that the VA will provide all the health care and long-term care services the veteran needs and that the veteran will be able to obtain these services simply by virtue of the fact that he or she is a veteran. The preceding section pointed out that some of the services that maybe needed for veterans with dementia are not available from the VA at all or 4 The VAs pl arming process (called Medical District Initiated Program Planning-MEDIPP) allows each VA medical center some degree of discretion about the type and amount of services it will offer. The MEDIPP process then coordinates the individual medical centers plans at the disirict level. s~resw= t. ~on=ssio~ rqests and a man&te of public L,aw 99-576, the VA prepared a ~pOll on Alternativ~ to rnstitutio~ cme~ tich was presented to Congress in January 1988 (860). The report describes the VAs noninstitutional services for elderly veterans and veterans with chronic mental illness, including various pilot and demonstration projects intended to evaluate the effectiveness of noninstitutional services for these patient groups. The report points out the importance of institutional care for some types of veterans.
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210 Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias are only available from certain VA medical centers. This section discusses problems in linking veterans with dementia to services that are available from the VA. The discussion focuses on the complexity of the eligibility criteria for VA services, the difficulty of determining g whether a veteran with dementia will receive VA services, and the lack of accurate information about what services are available. All three of these problems are frustrating for families and others who are trying to plan and arrange services for a veteran with dementia. The Complexity of the Eligibility Criteria for VA Services In 1986, Congress passed Public Law 99-272, which substantially revised the eligibility criteria for VA health care and health-related services. The law specified three categories of veterans"A," B, and C for the purposes of eligibility determination. The law mandated a means test for certain veterans and certain services and, for the first time, required the VA to provide hospital care for certain veterans. In 1988, Congress passed Public Law 100-322, which further revised the eligibility criteria for outpatient care. The resulting criteria are extremely complex. Although the eligibility criteria for VA services can be and frequently are s ummarized in one or two paragraphs, such a summary fails to convey a true sense of their complexity. Since that complexity is one of the major problems in linking veterans with dementia to VA services, the eligibility criteria are described in greater detail here. The three categories of veterans specified by Public Law 99-272 are as follows: Category A includes any veteran who: l l l l l l has a service-connected disability; is a former prisoner of war; served during the Spanish-American War, Mexican border period, or World War I; may have been exposed to certain toxic substances while on active duty in Vietnam; may have been exposed while on active duty to ionizing radiation from nuclear testing or participation in the American occupation of Hiroshima or Nagasaki, Japan; has an income below $15,833 for a single veteran and $18,999 for a marri ed veteran, plus $1,055 for each additional dependent 6 ; is eligible for Medicaid; or l receives a VA pension. Category B includes any veteran who does not have a service-connected disability, does not meet the other criteria for category A, and has an annual income between $15,833 and $21,110 for a veteran with no dependents and between $18,999 and $26,388 for a veteran with dependents. Category C includes any veteran who does not have a service-connected disability, does not meet the other criteria for category A, and has an annual income over the category B amounts. Determining g whether a veteran is eligible for and will receive a service is complicated not because of the three categories just listed, but because of other factors that affect the determination. One of the factors is whether the condition for which the veteran needs treatment or services resulted from military duty (i.e., whether the condition is serviceconnected). Another factor is what services the veteran needs. The VA is required to provide certain services for certain veterans, as discussed below, but most services for most veterans must be provided only on a space available basis. Thus, the services are not an entitlement; a veterans eligibility for them is not absolute but, instead, depends on whether there is space available in the service program (641,741). As a result, a given veteran might be determined to be eligible for and receive a given service from one VA medical center that had space available but not from another VA medical center that did not have space available. Lastly, the eligibility criteria for regular VA services are sometimes waived for services provided as part of a research or demonstration program. The following sections describe the eligibility criteria for many of the kinds of services described earlier in this chapter as potentially helpful for veterans with dementia. Hospital Care Public Law 99-272 required that the VA provide free hospital care for any category A veteran who: is being treated for a service-connected disability; has a service-connected disability and is being treated for any disability; %e dollar figures in this seetion are for 1988. The figures for subsequent years are adjusted in the same manner as VA pensions.
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Chapter 6--Linking Veterans With Dementia to VA and Non-VA Services l 211 was discharged or released from active duty due to a disability incurred or aggravated in the line of duty and is being treated for any disability; has a disability resulting from VA treatment or the pursuit of vocational rehabilitation and is being treated for any disability; has a service-connected disability rated at 50 percent or more and is being treated for any disability; is a former prisoner of war and is being treated for any disability; served in the Spanish-American War, Mexican border period, or World War I and is being treated for any disability; may have been exposed to certain toxic substances while on active duty in Vietnam or to ionizing radiation from nuclear testing or participation in the American occupation of Hiroshima or Nagasaki Japan, and is being treated for a condition possibly related to that exposure; or has a nonservice-connected disability and is unable to defray the cost of medical care, including: a. veterans who receive VA pensions, b. veterans who are Medicaid eligible, and c. veterans with yearly incomes below $15,833 for a single veteran and $18,999 for a married veteran, plus $1,055 for each additional dependent. All other veterans may be eligible for VA hospital care at the discretion of the VA medical center and if there is space is available. Category B veterans may be eligible for flee hospital care if there is space available. Category C veterans may be eligible for hospital care if there is space available and if they pay a deductible. In 1988, the deductible was $540 for the first 90 days, and $270 for each subsequent 90-day period up to a maximum of $1,350 a year (76). Outpatient Care Public Law 100-322 required that the VA provide outpatient care for any category A veteran who: l l l is being treated for a service-connected disability, has a service-connected disability rating of 50 percent or more, or is disabled as a result of VA treatment or in pursuit of vocational rehabilitation (817). Public Law 100-322 further required the VA to provide, as medically indicated, outpatient services in preparation for, as followup to, or to obviate the need for, hospital admission for any veteran who: l has a 30 percent or 40 percent disability rating, or l has an annual income below $9,940 (a figure that is increased by $1,055 for each dependent and is adjusted annually) (817). The VA may provide outpatient care for some other veterans in preparation for, in followup to, or to obviate the need for hospital admission in the following order of priority. Priority Group I: any category A veteran who: 1. has a service-connected disability rated at less than 30 percent or needs a compensation or pension examination; 2. is a former prisoner of war or was exposed to toxic substances in Vietnam or ionizing radiation from a nuclear explosion; 3. served in World War I or the Mexican border period or is receiving an aid and attendance pension or a similar VA pension; or 4. has income greater than $9,940 and less than the category A threshold (e.g., $15,833 for single veterans) (817). Priority Group II: any category B veteran. Priority Group III: any category C veteran who agrees to pay a copayment of $25 per visit. Nursing Home Care Nursing home care is a discretionary benefit that may be given to all veterans to the extent that space and finding are available as long as it is given in the following priority order: Priority Group I: any category A veteran who: 1. has a service-connected disability and is being treated for any condition; 2. was discharged or released from active duty due to a disability incurred or aggravated in the line of duty and is being treated for any condition; 3. has a disability resulting from VA treatment or in pursuit of vocational rehabilitation and is being treated for any condition; 4. is a former prisoner of war and is being treated for any condition;
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212 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias 5. 6. 7. may have been exposed to certain toxic substances while on active duty in Vietnam or to ionizing radiation from a nuclear test or participation in the American occupation of Hiroshima or Nagasaki, Japan, and is being treated for a condition possibly related to that exposure; served in the Spanish American War, the Mexican border period, or World War I and is being treated for any condition; has a nonservice-connected disability and is unable to defray the cost of medical care otherwise, including: a. veterans who receive VA pensions, b. veterans who are Medicaid eligible, and c. veterans with yearly incomes below $15,833 for a single veteran and $18,999 for a married veteran, plus $1,055 for each additional dependent. Priority Group II: any category B veteran. Priority Group III: any category C veteran who agrees to pay the deductible. Care in a VA nursing home is free for veterans in priority groups I and II. Veterans in priority group III must pay a copayment. Length of stay in a VA nursing home is not restricted for veterans in any of the three priority groups. Veterans in any of the three groups can be admitted to a VA nursing home from their home, a hospital, or a residential care setting. Care in a non-VA nursing home through the VAs community nursing home program (described in the previous section) is also free for veterans in priority groups I and II. Veterans in priority group III must pay a copayment. Length of stay in a non-VA nursing home is not restricted for veterans being treated for a service-connected disability and veterans who were previously hospitalized primarily for the treatment of a service-connected disability. For all other veterans, care in a non-VA nursing home is restricted to 6 months, and many VA medical centers limit the allowed length of stay to 2 to 3 months. 7 Except for veterans being treated for serviceconnected disabilities, veterans admitted to a nonVA nursing home through the community nursing home program must be admitted from a VA hospital. This requirement sometimes poses a problem for veterans with dementia who need nursing home care: the problem arises because VA hospitals may not consider a cognitive impairment alone as a sufficient reason for hospital admission, and veterans with dementia may not have an acute illness or another condition that would justify hospital admission. Domiciliary Care Veterans who need domiciliary care can qualify if their annual incomes are below the aid and attendance pension level-$9,940 for the veteran without dependents (a figure that is increased by $1,055 for each dependent and is adjusted annually), or if, as determined by the Secretary, they have no adequate means of support. In clarifying these eligibility criteria, the conferees for the Veterans Benefits and Services Act of 1988 stated that veterans with service-connected disabilities should be given first priority and that income alone should not be used to deny them eligibility for domiciliary care (817). Eligibility Criteria for Other VA Programs VA research and demonstration programs and some other VA programs often provide services for veterans who would not necessarily be eligible for VA services under the general eligibility criteria. With respect to GRECC programs, for example, a veteran whose situation fits into the research being conducted by the GRECC can be admitted to the program, regardless of whether the veteran meets other eligibility criteria. In order to qualify for the inpatient and outpatient care provided by the Dementia Study Unit at the GRECC in Bedford, Massachusetts (see box 6-A), a veteran must have a diagnosis of Alzheimers disease (440). If this criterion is met, the veteran can be admitted into the program and receive free services whether or not he or she has a service-connected disability or a qualifying income level. Likewise, VA special care units can admit veterans on the basis of their diagnosis or condition, independent of the general eligibility criteria for VA hospital or nursing home care. Situations like these in which the general eligibility criteria for VA services are not strictly applied add to the complexity of VA eligibility criteria. 7A vet~th demen~ who ~5 a semicecomwt~ distiifi~ unrelated to the dementia would not qualify fOr unrestricted nursing home c~e in anon-VA nursing home unless the care were needed for the veterans service-connected disability.
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Chapter 6--Linking Veterans With Dementia to VA and Non-VA Services l 213 Although one would not want to require VA research and demonstration programs and other special programs to admit only veterans who meet the general eligibility criteria for VA services, it is easy to understand why the existence of completely different sets of eligibility requirements for apparently similar services might be confusing for families and others who are trying to locate and arrange services for a veteran with dementia. The Difficulty of Determining Whether a Veteran With Dementia Will Receive VA Services The complexity of the eligibility criteria for VA services--especially as the criteria interact with the factor of space availability -make it difficult to determine whether a veteran with dementia will receive VA services. With the exception of the hospital and outpatient services that the VA is now mandated to provide for some veterans, most VA services, including the extended-care and special services discussed earlier in this chapter, are provided on a space available basis. Since the availability of specific kinds of VA services usually cannot be known with certainty much before the time when the services are to be used, it may be difficult, if not impossible, for families and other informal caregivers to know in advance whether a veteran with dementia will receive the services. The factor of space availability is important in determining g whether veterans with all kinds of disabilities will receive VA services, but it may be especially important for veterans with dementia. As is obvious from the preceding review of the eligibility criteria for VA services, veterans with serviceconnected disabilities have the highest priority for VA services. Since most diseases that cause dementia occur late in an individuals life, long after he or she is discharged from military service, dementia is seldom considered a service-connected disability (724). Some veterans with dementia have another service-connected disability or meet one of the other previously listed criteria that give an individual high priority for receiving VA services. For veterans with dementia who do not meet any of these criteria (e.g., all category B and C veterans), space availability is a major factor determining whether they will receive VA services. 8 The availability of VA services is affected by both the supply of and the demand for services. The supply of all VA services depends on the funds available to the VA as a whole and to individual VA medical centers. The supply of specific kinds of services depends on decisions at the national, district, and individual VA medical center level in regards to which services will be funded. The demand for VA services depends on the number of veterans who need the services, the availability and cost to the veteran of non-VA services, veterans and their families awareness of VA and non-VA services, their perception of the relative quality of VA v. non-VA services, and other factors (641, 662,741). Since the availability of VA services is determined by the supply of and the demand for services, availability changes in response to changes in both the factors that affect supply (e.g., the funds available to the VA) and the factors that affect demand (e.g., the number of veterans who need services). A full analysis of these factors is beyond the scope of this OTA assessment. It is clear, however, that current pressures to contain Federal spending are placing limits on the funds available to the VA. At the same time the VA is faced with increased demand for services because of the growing number of older veterans (8,490,815,820,854). The number of veterans over age 65 increased from 3 million in 1980 to 7 million in 1990 and is expected to increase to 9 million by the year 2000 (854). Historically, veterans have relied primarily on non-VA services. From 1979 to 1981, for example, only 13 percent of all veterans hospitalizations were in VA hospitals (823). That could change, however, if the cost of non-VA services increased or their availability or quality decreased (741). Spurred by an awareness of the increasing number of older veterans, the VA and other government agencies have tried to project the future demand for VA services (805,824). In 1984, the VA published a report projecting future demand and setting goals for % lg84, about 30 percent of tie veter~ treated in VA hospitals had a servic~connected disability, and 70 pticent did not. @ one Pficu~ day, Sept. 30, 1984, 16 percent of the veterans treated in VA hospitals were being treated for a condition related to their service-comected disability, and 84 percent were being treated for a nonservicz-connected condition (823). OTA is not aware of more recent data on these issues. Pre sumably, however, iftherehas beenanincrease since 1984 in the proportion of veterans being treated in VA facilities who are being treated for a serviceconnected disability or who at least have a service-connected disability, veterans with dementia who do not have a service-connected disability are less likely to receive services.
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214 Confided Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias specific VA programs considered important in caring for older veterans (e.g., GRECCs, GEUs, hospital-based home care, adult day health care, and community residential care). 9 With the exception of hospital-based home care, the VA is far from reaching its 1990 objectives for these programs. l0 The preceding discussion suggests that the supply of certain VA services is unlikely to meet the demand for the services on a national level and that veterans with dementia who do not have a serviceconnected disability and do not meet one of the other criteria that give an individual high priority for receiving discretionary VA services maybe unlikely to receive the services. During testimony at a hearing in April 1989, representatives of two veterans organizations testified that some VA medical centers were turning away category B and C veterans (490,882). One representative of a service organization said that several VA medical centers have publicly announced the discontinuance of all types of care for category B and C veterans (490). On the other hand, the supply of and demand for VA services varies at different VA medical centers, and as discussed earlier, the eligibility criteria for different VA services also vary. Despite the problems of space availability, therefore, it is likely that some, and perhaps many, veterans with dementia will continue to receive VA services. The Lack of Information About VA Services As noted in the beg inning of this chapter, OTA has heard complaints from some caregivers of veterans with dementia about the difficulty of finding out what services are available from the VA. Anecdotal evidence suggests that many veterans and their families are not knowledgeable about what services are provided by the VA. In the course of this study, it has become clear to OTA staff that many non-VA health care and social service professionals, service providers, information and referral agencies, case managers, and others who refer people with dementia to services also are not knowledgeable about VA services. This lack of knowledge includes both a lack of general awareness of services, referred to as service consciousness in this report, and a lack of knowledge about specific services, referred to as service knowledge in this report. OTA is not aware of any research on how families and other informal caregivers of veterans with dementia, who are eventually linked to VA services, find out about the services. VA medical centers frequently have printed brochures that describe the services they provide, but these brochures seem to be of only limited utility for caregivers of veterans with dementia. Anecdotal evidence indicates that some caregivers find out about potentially helpful VA services by contacting a VA medical center directly. Other caregivers find out about such services from veterans organizations that may not only give them information about services but also help them obtain the services. Still other caregivers find out about VA services from anon-VA health care or social service professional, service provider, or case manager who has previously learned about the services from another client, a professional meeting, or another source. OTA does not know how many caregivers learn about VA services in any of these ways. Often, however, it seems that caregivers find out about potentially helpful VA services in completely haphazard ways. As described in box 6-C, all but one of the members of the Wives Support Group at the E.N. Rogers Memorial Veterans Hospital in Bedford, Massachusetts, said they found out about the special Alzheimers program at the VA hospital by accident, from a friend, an acquaintance, or a TV program they happened to watch. Probably some caregivers only learn about some of the VAs extended-care services and the special VA programs described in this chapter after their relative or friend with dementia has been admitted to a VA hospital for an acute medical condition. Given the variation among VA medical centers in the amount and kinds of services they provide and the complex issue of space availability that affects what services are really available though a VA medical center, it is easy to understand why there would be a lack of accurate information about VA services. Until recently, the VA itself has not been fully aware of the kinds of services it is providing for veterans with dementia. In 1988, the VA conducted %e projections in the VAs 1984 report were made before the 1986 and 1988 revisions to the eligibility criteria for VA services. OTA is not aware of any projections of future demand for VA semices that take those revisions into consideration lo~a~y, wi~hospi&=home ~eprograms at 73 medical centers, the VA is close to its 1990 goal of 76 medical cezlters with hospital-based home care programs. Only 87 VAmedical centers have GEUS, still 33 short of the 1990 goal of 120 centers. There are 12 GRECCS, 18 GRECCS shy of the 1990 goal of 30. Adult day health care is available through 15 VAmedical centem, 25 below the 1990 goal of 40 programs. Community residenthd care is available through 127 VA medical centers, although the 1990 goal was to have that program in effect in all 172 VA medical centers (854,917).
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Chapter 6--Linking Veterans With Dementia to VA and Non-VA Services l 215 a survey of all 172 VA medical centers to find out what programs and services were available for veterans with dementia (76). The results of the survey have been compiled into a directory for internal VA use in referring veterans and their caregivers to services and responding to public inquiries about the location of services for veterans with dementia across the country. It is hoped that the directory will allow the VA to provide more accurate information about services (76). The directory cannot solve the problem of determining g whether an individual veteran with dementia will actually receive VA services, however, because that determination depends to a great extent on space availability at the time the veteran needs the services. Summary and Implications The complexity of the eligibility requirements for VA services, the difficulty of determining g whether a veteran with dementia will receive VA services, and the lack of information about VA services complicate the process of linking veterans with dementia to VA services. Anecdotal evidence indicates that many caregivers of veterans with dementia do not know what VA services are available and do not know how to find out. As a result, some caregivers may not apply for services the veteran needs and could receive from the VA. Other caregivers may assume mistakenly that the VA will provide the needed services. When these caregivers finally do apply to the VA for services--often very late in the course of the veterans illness when the caregiving situation has become unmanageable-they may find that the services they need are not available, that the veteran is not eligible for the services, or that the programs that provide the needed services are full. The recently completed directory of VA services for veterans with dementia should allow the VA to provide more accurate information about services. With the exception of certain services now mandated for certain veterans, however, most VA services are provided on a space available basis. Since space availability cannot be determined much before the time when the veteran will use the services, families and other informal caregivers generally cannot know in advance whether the veteran will receive VA services. This is true of the extended care services and many of the special VA programs described earlier in this chapter. Without that information, families and others cannot plan ahead for the care of a veteran with dementia. Some caregivers of veterans with dementia contact the VA directly for information about services, but other caregivers would be unlikely to contact the VA unless they were referred by another source. The same factors that make it difficult for caregivers to know about potentially helpful VA services also make it difficult for non-VA health care and social service professionals, service providers, information and referral agencies, case managers, and others who refer people with dementia to services to know about VA services. Anecdotal evidence suggests that some individuals who refer people with dementia to services have an informal connection to someone at the VA and contact that person from time to time when they need information about VA services (404), but many agencies and individuals that refer people with dementia to services probably do not have such a contact at the VA and may not know how to find out about VA services. Over the years, the VA has participated in several cooperative initiatives with other community agencies, one purpose of which has been to inform the other agencies about VA services so that they can provide accurate information about VA services for veterans they may see as clients. Some VA medical centers and area agencies on aging (AAAs) have worked together to develop information and referral procedures to help the AAAs make appropriate referrals for VA services (662). Facilitating appropriate referrals of veterans to the VA for services is also one of the positive outcomes of many of the sharing agreements discussed later in this chapter. Finally, with respect to the policy question of the role of the VA in relationship to a national system to link people with dementia to services, it is clear that only the VA can finally link veterans with dementia to VA services. Non-VA health care and social service professionals, service providers, information and referral agencies, and case managers can refer veterans with dementia to the VA, and these referrals can be more or less appropriate. Likewise, a non-VA linking system could refer veterans with dementia to the VA. Given the complexity of the eligibility requirements for VA services, however, especially as they interact with the factor of space availability, it is clear that the VA must determine whether a veteran will receive VA services and which services he or she will receive. These functions cannot be performed by the non-VA linking system, and this OTA report does not consider that an option.
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216 Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias PROBLEMS IN LINKING VETERANS WITH DEMENTIA TO NON-VA SERVICES Although the VA provides many of the services that may be needed for veterans with dementia, some veterans with dementia are not eligible for VA services, and some services that are needed for people with dementia are not available from the VA or are only available from certain VA medical centers. As a result, many veterans with dementia are likely to need non-VA services as well. The VA has at least four mechanisms by which it links veterans to non-VA services. Two of these mechanisms-hospital discharge planning and case management--directly link individual veterans to non-VA services. The other two mechanisms sharing agreements and the functions of the community services coordinator at each VA medical centergenerally coordinate VA and nonVA services, thereby indirectly facilitating veterans access to non-VA services. This section briefly describes each of the four mechanisms and discusses problems that may interfere with their effectiveness. The section also identifies certain types of veterans who are unlikely to be linked to non-VA services through the four mechanisms. It is interesting to note that although some people believe that the VA should provide the full range of health care, long-term care, and other services needed for all veterans, the VA often describes its role as providing certain services and attempting to ensure that veterans have access to the other services they need through the four mechanisms discussed in this section (837,860). In that sense, hospital discharge plannin g, case management, Community services coordination, and joint initiatives with non-VA agencies are the means by which the VA tries to promote continuity of care and ensure the availability of comprehensive services for veterans even though it cannot provide all the services directly. VA Mechanisms for Linking Individual Veterans to Non-VA Services The Social Work Service at each VA medical center has primary responsibility for linking individual veterans to non-VA services and implements that responsibility largely through hospital discharge planning and case management. Veterans who need non-VA services can come to the attention of the Social Work Service in several different ways: l l l l veterans who are receiving inpatient care in a VA hospital maybe referred to or identified by the Social Work Service as needing hospital discharge planning; veterans who are receiving extended-care services through certain VA programs routinely receive case management, which is usually provided by the Social Work Service; veterans who apply to a VA medical center for services but are denied VA services for any reason (e.g., they are not eligible, there is no space in the service program, or the VA medical center does not provide the services they need) may be referred by the admissions office to the Social Work Service; and veterans and their families who are not receiving any VA services may contact the Social Work Service directly for assistance in finding non-VA services. Each VA medical center has a policy for hospital discharge planning. Within that policy, the Social Work Service is required to have discharge planning procedures that include: l l l l l the provision of a multidisciplinary assessment; the development of a plan of care that incorporates quality of life concerns; the involvement of the veteran, the veterans family, and significant others in discharge planning; the Provision of referrals to non-VA service providers and assistance in services; and the provision of referrals to services (858). In fiscal year 1987, VA social hospital discharge planning for (857). arranging non-VA VA extended-care workers provided 420,000 veterans VA case management includes the five functions identified by OTA as core case management functions (i.e., client assessment, care planning, service arrangement and coordination, monitoring, and reassessment), plus screening (236). The VA routinely provides case management for veterans who are receiving extended-care services through certain VA programs, such as the hospital-based home care program, the community nursing home program, and the community residential care program. The
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Chapter 6--Linking Veterans With Dementia to VA and Non-VA Services l 217 Social Work Service generally has primary responsibility for the provision of case management in these programs, but in some instances, the case manager may be a VA nurse or another member of the treatment team, depending on the veterans needs (236). In these programs, case management includes arranging and coordinating both VA and non-VA services (858). The Social Work Service at each VA medical center is required to identify veterans in certain at risk categories and to provide hospital discharge planning and case management for them, as needed (858). Veterans with dementia might be included in several of the at risk categories, e.g., chronically ill, incompetent, or age 70, disabled, and living alone. OTA is not aware of any data on the number of veterans with dementia who receive hospital discharge planning or case management through the VA. VA hospital discharge planning and case management are provided primarily for veterans who are already receiving or are eligible for VA services: by definition, VA hospital discharge planning is provided for veterans who are receiving inpatient care, and VA case management is provided most often for veterans who are receiving VA extended-care services. On the other hand, the Social Work Service at each VA medical center is not strictly limited to helping veterans who are already receiving or are eligible for VA services (620). Two situations in which VA social workers might assist veterans who are not already receiving or eligible for VA services were noted earlier: 1) situations in which veterans who apply for but do not receive VA services for any reason are referred by the admissions office to the Social Work Service, and 2) situations in which veterans or their families contact the Social Work Service directly for assistance in finding non-VA services (620). OTA does not know how frequently either of these situations occur. VA social workers are probably more likely to provide information and referrals than comprehensive case management in these situations. Four software programs have been developed by the Social Work Service Special Interest Users Group to assist VA social workers with discharge planning and case management. The four programs are: l l l l The High-Risk Screening Program, which is intended to identify veterans who are most likely to need social work services, including discharge planning and case management; The Case Registry System, which is intended to help social workers keep track of veterans throughout the course of their care; The Community Resources Managers Program, which is intended to help the Social Work Service at each VA medical center maintain an accurate and easily accessible list of non-VA services and service providers by type and geographic location of the provider; and The Contract Nursing Home Budget and Censw System, which is intended to help social workers maintain information about VA patients in non-VA nursing homes under contract with the VA (236,856). Problems in Linking Individual to Non-VA Services According to several sources, one Veterans of the most difficult problems encountered by the VA in linking individual veterans to non-VA services is the complexity and fragmentation of non-VA services at the community levelthe same problem encountered by anyone who tries to locate and arrange services in many communities (481,854,860). Although some VA medical centers are using the Community Resources Managers Program software or other systematic procedures to develop and maintain an accurate list of non-VA services, obtaining the necessary information to keep the list up-to-date can be time-cons uming and difficult, just as it is time-cons uming and difficult for non-VA information and referral agencies, case managers, and others. The complexity and fragmentation of non-VA services at the community level exists irrespective of the mechanisms by which the VA links individual veterans to non-VA services, but two other problems in linking individual veterans to non-VA services are related to those mechanisms. One problem is that the VA mechanisms for linking individual veterans to non-VA services are available primarily, although not exclusively, to veterans who are already receiving or are eligible to receive VA services. Many veterans with dementia are unlikely to receive or to be eligible for VA services and therefore may not
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218 Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias receive help from VA social workers in finding non-VA services. A second problem is that the mechanisms by which the VA links individual veterans to non-VA services are more easily implemented for veterans who live near a VA medical center, but some VA medical centers have a very large catchment area, and many veterans in their catchment areas live far from the center. In general, it is probably more difficult for the Social Work Service at a VA Medical Center to maintain an accurate list of non-VA services for geographic areas that are far from the VA medical center than for areas near the center. Likewise, it is more difficult for VA social workers to provide case management for veterans who live far from the medical center. As a result, these veterans may not receive adequate assistance from the VA in linking to non-VA services. The Minneapolis VA Medical Center has developed a case management program that successfully addresses the latter problem (316). The case management program seines veterans in three areas that comprise 23 primarily rural counties in south central and southeastern Minnesota and 16 primarily rural counties in western Wisconsin. The program is intended to help frail elderly veterans obtain the VA and non-VA services they need to live independently and avoid premature institutionalization. The VA has assigned a VA social worker to each of the three designated areas to provide outreach, case management, caregiver support, and patient advocacy. VA Mechanisms for Coordinating VA and Non-VA Services In addition to hospital discharge planning and case management, the VA has at least two mechanisms by which it attempts to coordinate VA and non-VA services and thus indirectly facilitate veterans access to non-VA services. One of these mechanisms is sharing agreements between VA medical centers and non-VA agencies in which the non-VA agencies provide services for veterans in exchange for information, technical assistance, consultation, and other services from the VA medical center. Although there were informal arrangements for sharing resources and expertise between VA medical centers and non-VA agencies before 1975, official support for formal sharing agreements began in 1975 with a working agreement between the VA and the Administration on Aging (820). One sharing agreement between a VA medical center and an AAA in West Virginia is described in box 6-D. 11 The second mechanism by which the VA attempts to coordinate VA and non-VA services is through the designation of community services coordinators who are intended to be the focal point for contact between the VA and non-VA agencies (859). Since 1985, the VA has required the Social Work Service at each VA medical center to identify a community services coordinator. The functions of the community services coordinator are as follows: l l l l l l to identify and assess existing non-VA health care, social, and volunteer services; to coordinate and integrate the VAs services and activities with the non-VA health and social services network, including AAAs; to make available the full range of non-VA services to aging veterans and their caregivers; to facilitate VA staff involvement in joint activities with AAAs and other community agencies, including program development, sharing services, and cooperative planning; to integrate and link non-VA resources into the VAs Medical District Initiated Program Planning (MEDIPP) process; and to facilitate joint development of health education and disease prevention programs (859). In addition to the community services coordinator at each VA medical center, there is a community services coordinator at the VA Medical District level who is responsible for developing new programs, drawing up cooperative agreements between the VA and community providers, and integrating the concerns of the community services coordinator at each medical center into the Districts planning process. Some VA medical centers are part of a consortium of agencies that is unique to a specific locality. One example is the VA medical center in Tulsa, Oklahoma, that is part of the Long-Term Care Management Authority of Tulsa described in chapters 1 and 7. Another example is the VA medical centers in the Chicago area that are part of the VA/AAA Council, described in box 6-E. Like sharing agreements and ll~e s-g ag~ment described inbox 6-D does not require the VA to provide direct services for nonveterans, but the VA is permitted tO provide direct services for nonveterans in the context of a formal sharing agreement.
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Chapter 6---Linking Veterans With Dementia to VA and Non-VA Services .219 Box 6-D-The Sharing Agreement" Between a VA Medical Center and an Area Agency on Aging in West Virginia The Louis A. Johnson VA Medical Center in Clarksburg, West Virginia, has a formal (signed by both parties) sharing agreement with the area agency on aging (AAA) in nearby Fairmont, West Virginia The agreement delineates the service coordination and case management functions the AAA is obligated to provide for veterans discharged to the community from the VA hospital and the training the VA is obligated to provide for AAA staff members and other non-VA service providers. When a veteran is discharged to the community from the VA hospital, the Social Work Service at the VA medical center notifies the AAA. The AAA provides an assessment and, based on the results of the assessment, links the veteran to non-VA services he or she needs, such as home-delivered meals and homemaker and chore services Since the VA medical center does not have a hospital-based home care program, the AAA also arranges for home health services, if they are needed. In return for the case management provided by the AAA, the VA furnishes training on specific topics to AAA staff and the staff of other non-VA agencies. Through the sharing agreement, veterans who are discharged from the VA hospital are assured of receiving help in obtaining the non-VA services they need to remain at home. The AAA director believes that the formality of the sharing agreement has been important to the programs success over the years and advocates this type of agreement for all VA medical centers. SOURCE: J. Hunter, director Area Agency on Aging, Fairmont, West Virginia, testimony to the Joint Hearingof the Subcommittee on Hospitals and HealthCarc of the Committee on Veterans' Affairs and the Select Commi ttee on Aging, House of Representatives, u.s. Congress, Washington, DC, Apr. 23, 1985; T. Moody, chief, Social Work Service, Louis A. Johnson VA Medical Center, Clarksburg West Virginia, personal communications, Oct. 5, 1988 and July 13, 1989. the functions of the community services coordinaagencies, and vice versa (820). A witness representtors, the involvement of VA medical centers in local consortiums with non-VA agencies results in greater interaction between the staff of the VA medical centers and of the non-VA agencies and thereby facilitates veterans access to non-VA services. Problems in Coordinating VA and Non-VA Services According to VA officials, the major problem with the community services coordinator program is understaffing. Typically, one social worker is designated to this position in a half-time capacity and must function as the community services coordinator in addition to his or her other responsibilities (620). The primary problem with formal sharing agreements is that although the formal agreements are usually effective in coordinating VA and nonVA services, very few VA medical centers have established them. According to one VA official, the typical VA medical center has, at best, a verbal agreement with the local AAA (620). At a 1985 joint hearing of the House Select Committee on Aging and the Veterans Affairs Subcommi ttee on Hospitals and Health Care, VA officials testified that virtually all VA medical centers have established contact with AAAs, and that such contact has greatly increased the number of appropriate referrals from the VA to community ing the leadership council of aging organizations testified, however, that, despite some unique local arrangements between VA medical centers and AAAs, the connections between VA medical centers and non-VA agencies in their catchment areas are generally fragmented (343). Summary and Implications VA hospital discharge planning and case management help link veterans to non-VA services. VA community services coordinators and formal sharing agreements and other arrangements between VA medical centers and non-VA agencies help to coordinate VA and non-VA agencies and thereby indirectly facilitate veterans access to non-VA services. A major problem in linking veterans to non-VA services is the complexity and fragmentation of non-VA services at the community level. As discussed throughout this OTA report, a national system to link people with dementia to services would help families and others find the services they need to care for a person with dementia. One option discussed in chapter 1 is that if such a national linking system were established, VA hospital discharge planners and case managers could refer veterans with dementia to that system for assistance in locating and arranging non-VA services. 89-150 90 8
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220 l Confided Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias Box 6-EThe VA/AAA Council of the Chicago Area VA Medical Centers and Three AAAs Since 1985, the VA medical centers in the Chicago metropolitan area and three area agencies on aging (AAAs) have been working together to provide comprehensive and coordinated social and health services to a rapidly expanding population of older veterans. Together they formed the Metropolitan Chicago Veterans Administration/ Area Agency on Aging Collaboration Council-known as the VA/AAA Council. The purposes of the VA/AAA Council are: 1) to identify areas for potential collaboration; 2) to act as an information clearinghouse and a best practice forum for coordinated programs and services for older veterans; 3) to facilitate joint program development, coordination, evaluation, and service delivery to older veterans; 4) to review proposed projects and make recommendations for their implementation; and 5) to help obtain funding for joint activities. Each year the VA/AAA Council establishes priorities. This is done by sharing the agencies specific needs and priorities for their own target populations and then identifying common areas of concern. One of the projects of the VA/AAA Council is an adult day health care program called the Alzheimers Family Care Center. The Alzheimers Family Care Center, which opened in 1987, is the result of collaboration between two VA/AAA Council members-the VA West Side Medical Center and the Chicago Department on Aging and Disability-and two nonmembers-Rush-Presbyterian-St. Lukes Medical Center and the Chicago Chapter of the Alzheimers Association. The center serves both veterans and nonveterans, but veterans have priority for 40 percent of the enrollment slots. SOURCE: Working Together---Metro Chicagos VA and AAA--To Assist Chicagos Elderly Veterans, Aging Network News, May 1989, vol. 6, No. 1, pp. 3-4. Currently, VA hospital discharge planning and with dementia. The VA estimates that there will be case management are provided primarily for veter600,000 veterans with dementia by the year 2000. ans who are already receiving or are eligible for VA services. As a result, some veterans who are not already receiving or eligible for VA services may not receive from the VA the help they need to find non-VA services. If a national linking system were established, that system might be given primary responsibility for helping veterans who are not already receiving or eligible for VA services to find the non-VA services they need, while the VA retained primary responsibility for helping veterans who are receiving or are eligible for VA services to find non-VA services. The other type of veterans who may not receive the help they need from the VA to find non-VA services is veterans who live far from a VA medical center. It is possible that the national linking system should also be given primary responsibility for linking those veterans to non-VA services. If, in contrast, the VA were to have primary responsibility for linking all veterans to non-VA services, it would need more staff and more resources than it now has for that purpose. CONCLUSION By the year 2000, there will be 9 million veterans over age 65, including two-thirds of all males over age 65 in this country. As the number of elderly veterans increases, so will the number of veterans The VA operates the largest health care system in the United States and currently furnishes many of the kinds of services that maybe helpful for veterans with dementia. Those services include acute medical care, diagnosis, multidimensional client assessment, nursing home and domiciliary care, hospital-based home care, adult day health care, institutional respite care, and several other programs of particular relevance for veterans with dementia and their caregivers. These services are not available at all 172 VA medical centers, however, and not all veterans with dementia are eligible for them. Moreover, some services that may be needed for veterans with dementia are not provided at all by the VA, and many VA services are furnished only on a space available basis, so that even if a veteran is eligible for a service and the service he needs is provided by a VA medical center that is accessible to him, he may not receive the service because the program is full. Unless the VA were to provide all the services that may be needed for all veterans with dementia (a possibility OTA considers very unlikely), veterans with dementia are likely to need both VA and non-VA services, and effective mechanisms must be in place to link them to both. Problems of several kinds interfere with the process by which veterans
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Chapter 6-Linking Veterans With Dementia to VA and Non-VA Services l 221 are linked to VA services. The eligibility criteria for VA services are extremely complex. Veterans and their families do not understand the criteria and may assume the veteran is eligible for services when he or she is not, or vice versa. They also may not be aware of potentially beneficial services provided by the VA. Non-VA agencies and individual professionals and service providers who work with veterans with dementia often do not understand the VAs eligibility requirements and may not be knowledgeable about VA services. As a result, they may not be able to give veterans and their families accurate information about available services or eligibility for the services. Other problems interfere with the process by which veterans are linked to non-VA services. Each VA medical centers Social Work Service has a community services coordinator whose job is to identify non-VA services in the community, and the VA has developed a software system to help the Social Work Service at each VA medical center maintain an up-to-date list of non-VA services. The community services coordinator position is staffed only half-time at many VA medical centers, however, and the complexity and fragmentation of non-VA services in many communities makes it difficult for anyone to maintain an accurate, comprehensive resource list. Without effective methods for linking veterans with dementia to both VA and non-VA services, the veterans will not receive services they need, and their families are likely to be frustrated and upset. The policy question discussed in chapter 1 is the appropriate division of responsibility between the VA and a non-VA linking system for connecting veterans with dementia to services. If a national linking system were established, it could have primary responsibility for linking veterans with dementia to non-VA services. Alternatively, the VA could have primary responsibility for linking veterans to non-VA services. The pros and cons of these two alternatives are discussed in chapter 1. As discussed earlier, the complexity of the eligibility requirements for VA services, especially as they interact with the factor of space availability mean that only the VA can finally link veterans to VA services. This report does not consider the possibility that the national linking system could perform that function. On the other hand, the linking system would have to be somewhat knowledgeable about VA services and eligibility requirements in order to know when to refer veterans with dementia and their caregivers to the VA. Finally, it is clear that the VA services are important for veterans with dementia, and the VA must be involved in the planning and operation of a national system to link people with dementia to services regardless of the specific responsibility it assumes for linking veterans with dementia to non-VA services.
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Part II Possible Approaches to Linking People with Dementia to Services
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Chapter 7 State Programs and State and Community Service Systems That Link People to Services
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CONTENTS Page INTRODUCTION . . . . . . . . . . . . . . . 227 STATE LINKING PROGRAMS . . . . . . . . . . . . 229 Public Education Programs . . . . . . . . . . . . . 229 Information and Referral Programs . . . . . . . . . . . 230 Outreach programs . . . . . . . . . . . . . . . 235 Case Management Programs . . . . . . . . . . . . 235 States With Numerous Linking Programs . . . . . . . . . 237 Summary and Implications for a National System to Link People With Dementia to Services . . . . . . . . . . . . 244 STATE AND COMMUNITY SERVICE SYSTEMS . . . . . . . 245 Why Some States and Communities Have Developed Consolidated Long-Term Care Service Systems . . . . . . . . . . 245 Changes Involved in Developing a Consolidated Service System . . . . 246 Three States Consolidated Service Systems . . . . . . . . . 248 Four Communities Service Systems . . . . . . . . . . 251 Summary and Implications for a National System To Link People With Dementia to Services . . . . . . . . . . . . 253 Lessons From Long-Term Demonstration Projects for the Development and Operation of Long-Term Care Service Systems . . . . . . . 254 CONCLUSION . . . . . . . . . . . . . . . . 256 Bo x Page 7-A. Missouris Information and Referral Programs for Elderly People and for People With Alzheimers Disease . . . . . . . . . . 234 Figures Page 7-1. A Brochure Publicizing the Public Education and Other Services of the New Hampshire Division of Elderly and Adult Services . . . . . 231 7-2. A Resource Packet on Parkinsons Disease Produced and Distributed by the Kansas Department on Aging . . . . . . . . . . . 232 7-3. Areas of New York Served by the States Alzheimers Disease Assistance Centers and A1zheimers Disease Community Services Program . . . . . . 239 7-4. A Brochure Publicizing Californias 11 Regional Resource Centers for the Families and Caregivers of Brain-Impaired Adults . . . . . . 242
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Chapter 7 State Programs and State and Community Service Systems That Link People to Services INTRODUCTION One of the major policy issues in establishing a national system to link people with dementia to services is whether Congress should designate a single category of agencies to constitute the system nationwide or should mandate that each State designate the agencies that will make up the system in that State. In considering this issue, it is important to note that all States already have programs that link at least some people with dementia to services. In addition, some States and communities have a service system that links at least some people with dementia to services. This chapter discusses these State linking programs and State and community service systems. As defined in this chapter, linking programs are programs that perform one or more of the functions that the Office of Technology Assessment (OTA) concludes are essential to a system to connect people with dementia to services: l l l l public education (i.e., providing programs and materials to help people understand dementia and the kinds of services that maybe helpful for individuals with dementia); information and referral (i.e., providing information about and referrals to specific services and sources of funding for services in a community); outreach (i.e., using any active method to identify people with dementia and caregivers who need assistance but are unlikely to respond to public education programs or to contact an information and referral source on their own); and case management (i.e., assessing a clients needs, developing a plan of care, arranging and coordinating services, monitoring and evaluating services, and reassessing the clients situation as the need arises). 1 Service systems are defined in this chapter as organizational entities that pool funds from several different sources and integrate the functions of various agencies that provide services in a given geographic area. These entities are intended to create a consolidated system through which people are connected to services. An important difference between linking programs and service systems is that linking programs can be added to the service environment in a State or locality without changing the structure, function, or relationship of existing agencies or the way services are funded, whereas the creation of a consolidated service system necessarily changes the structure, functions, and relationship of existing agencies and funding procedures. The primary purposes of this chapter are to point out the existence of State linking programs and State and community service systems and to convey a sense of their diversity. These programs and systems are a significant aspect of the environment into which any federally mandated system to link people with dementia to services would be placed. Their existence and diversity greatly complicate the process of designing a national linking system. If States and communities did not already have linking programs and service systems, it would be relatively easy to design a national linking system. In that case, Congress could designate a single category of agencies to constitute the system nationwide without the risk of duplicating or disrupting existing State linking programs or State and community service systems. Similarly, if existing State linking programs and State and community service systems were all alike, Congress could establish a national linking system that simply connected existing programs and service systems (although in that case, such a system probably would have been established years ago). To design a national linking system that builds on and meshes with the diverse State linking programs and State and local service systems described in this chapter is difficult. The alternative, however, is the imposition of a system that further complicates and fragments what is already an extremely complicated and fragmented service environment. For this reason, many people, including almost all the members of the advisory panel for this OTA study, believe that Congress should mandate that each State designate IFor OTAs analysis of why these functions are essential components of a system to link people with dementia to Semices, see ck. 2 ~d 3.
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228 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias the agencies that will make up the linking system in that State. On the other hand, there are certain advantages to having Congress designate a single category of agencies to constitute the system nationwide, as discussed in chapter 8. The information about State linking programs and State and community service systems that is presented in this chapter is helpful in weighing these policy options. The information about State linking programs and State and community service systems presented here is also relevant to another policy issue raised in the reporti.e., whether a national system to link people with dementia to services should serve only people with dementia (i.e., whether it should be dementia-specific) or whether it should serve people with other diseases and conditions as well. Most State linking programs and State and community service systems serve elderly people or elderly and disabled people. Recently, however, many States have undertaken a range of dementia-specific initiatives, 2 including dementia-specific linking programs, and a few communities have developed dementiaspecific service systems. Several State officials and other people have told OTA they are opposed to the development of dementia-specific linking programs and service systems, because, in their view, people with dementia can be served effectively by programs and systems that serve elderly and disabled people in general and because dementia-specific programs and systems contribute to the fragmentation of the service environment. On the other hand, some people, including some advocates for people with dementia and their families, believe that dementiaspecific linking programs and service systems are needed because existing programs and service systems that are intended for elderly and disabled people often do not serve people with dementia effectively. In considering the issue of whether a national linking system should be dementia-specific, it is useful to compare the dementia-specific v. general linking programs and service systems in different States and communities. In considering this issue, it is also useful to keep in mind the distinctions made in chapter 1 among the concepts dementia-friendly, dementia-capable, and dementia-specific. With respect to linking programs and service systems, dementia-friendly means that the linking program or service system is responsive to people with dementia and their caregivers. Dementia-capable means that the program or system is skilled in working with people with dementia and their caregivers, knowledgeable about the kinds of services that may help them, and aware of which agencies and individuals provide such services in the community. Dementiaspecific means that the program or system serves people with dementia exclusively. As discussed in chapter 1, it is at least theoretically possible for a linking program or service system to be dementiafiiendly and dementia-capable without being dementiaspecific. The information about State linking programs and State and community service systems presented in this chapter is also relevant to two other policy issues raised in the report: 1. whether agencies that constitute a national linking system should provide services in addition to linking their clients to services, and 2. whether the agencies that constitute the system should allocate services or finding for services in addition to linking their clients to services. Some of the State linking programs and State and community service systems described in this chapter are administered by agencies that also provide services. Likewise, some of the State linking programs and all of the State and community service systems described in the chapter allocate services and/or funding for services. These State programs ?Ihe dementia-specific initiatives undertaken by some States and localities in the past several years include: 1) establishing task forces and commissions to study the problem of Alzheimers disease and related disorders and recommend solutions; 2) funding biomedical research on diseases that cause demen~ 3) developing caregiver support groups and caregiver education and training programs; 4) establishing regional Alzheirners diagnostic and assessment centers; 5) sponsoring education and tmining programs for service providers about Alzheimers disease, dementi% and how to care for people with dementia; 6) establishing dementia-speciilc in-home, adult day, and respite services; 7) modifying the eligibility requirements forpubliclyfunded programs so that they are available to people with dementia (e.g., by adding dementia to the categories of conditions that make people eligible for services or by lowering the age reqfiements for certain services so that people with dementia who are underage 60 or 65 can receive them); 8) encouraging the development of special nursing home units for people with dementia; 9) establishing guidelines or regulations for nursing home special care units; 10) establishing patient registries; 11) providing cash grants to families so that they can purchase services; and 12) prohibiting private insurance policies from excluding Alzheimers disease as a covered condition (5,14,122,333,465,5 13,576).
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Chapter 7--State Programs and State and Community Service Systems That Link People to Services l 229 and State and community service systems exemplify alternate models for a national linking system. The diversity of State linking programs and State and community service systems creates a kind of natural laboratory for comparing various approaches to linking people with dementia to services. The congressional committees that requested this assessment asked OTA to identify approaches that are being used in one State or locality and might be adapted for use in other jurisdictions. This chapter describes many such approaches. Some of the same categories of agencies that are discussed in other chapters of this report are used by States and communities to administer their linking programs and service systems. These categories of agencies are mentioned in this chapter only if they are part of a State linking program or a State or community service system. Chapter 8 discusses area agencies on aging (AAAs), home health care agencies, community mental health centers, Alzheimers Association chapters, the Family Survival Project, regional Alzheimers diagnostic and assessment centers, and five other categories of agencies that link some people with dementia to services and could, at least theoretically, be designated by Congress as the basis for a national system to link people with dementia to services. STATE LINKING PROGRAMS Many States have linking programs that serve at least some people with dementia. The following sections describe some of these programs. The programs are categorized in terms of their emphasis on one of the four linking functions that OTA concludes are critical to an effective system to link people with dementia to services: 1) public education, 2) information and referral, 3) outreach, and 4) case management. As pointed out in the discussion, some of the programs perform more than one of these functions, but none of the programs performs all four functions. The purpose of the discussion is to convey a sense of the number and diversity of existing State linking programs and the many types of public and private agencies that are involved in implementing the programs. The discussion does not cover all State linking programs, however, and the particular programs cited are not the only good programs of their type. Some States, notably New York and California, have numerous programs that link at least some people with dementia to services. Other States have comparatively few linking programs. The multiple linking programs in New York and California are discussed later in this chapter. Public Education Programs EEil Public education programs to help people understand dementia and the kinds of services that maybe help ~ ful for individuals with dementia may be provided by various means, including pamphlets, articles, newsletters, and other publications; posters, press releases, and public service advertising in various media; radio and television programs; audiotapes and videotapes; teaching packets and curricula; lectures, community meetings, and conferences. The primary sources of public education pertaining to dementia and services for people with dementia have been the national voluntary associations that represent people with Alzheimers disease and other diseases that cause dementia. As described below, however, some States also have developed or paid for the development of public education programs on dementia and services for people with dementia. In Pennsylvania, for example, the State Department of Aging has funded a variety of public education initiatives related to dementia over the past 6 years (14,650). One of these was the production, in 1984, of a television documentary on Alzheimers disease and related disorders entitled You Are Not Alone. Also in 1984, the department gave a grant to the Western Pennsylvania Alzheimers Association Chapter to develop a booklet on Alzheimers disease, Aging and Senile Dementia-What Every Pennsylvanian Needs To know About Alzheimers Disease and Other Types of Senile Dementia. The booklet has been distributed to individuals, support groups, hospitals, and other organizations. The Pennsylvania Department of Aging also developed a 4-part slide/audio training program for family caregivers of people with dementia. That program, which includes segments on community resources and financial and legal planning, is made available to caregivers through Alzheimers Association chapters and AAAs. Still another public education activity of the Pennsylvania Department of Aging is the maintenance of a statewide clearinghouse that provides general infor-
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230 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias mation about dementia and the kinds of services that may be needed for people with dementia. Like Pennsylvania, several States have dementiaspecific public education programs that are administered by the States department, division, or commission on aging. In New Hampshire, the State Division of Elderly and Adult Services sponsors dementia-specific public education programs that provide books, articles, videotapes, service directories, workshops, and speakers for community groups (see figure 7-1) (596). In Kansas, the State Department on Aging has produced and distributes comprehensive resource packets on Alzheimers, Parkinsons, and Huntingtons diseases that contain general information about the disease, appropriate treatment, community services, and sources for more information (395). The cover of each book includes a toll-free number that people can call for referrals to specific service providers (see figure 7-2). In Delaware, the State Division of Aging funds an Alzheimers resource center, which provides books, audiotapes, videotapes, and other educational materials about dementia and services for people with dementia (132). In South Carolina, the State Commission on Aging recently produced a videotape and printed educational materials on Alzheimers disease to train AAA staff and others who work with elderly people so that they will be able to provide public education programs in their communities (78). Many States have established a task force or committee to study the problem of Alzheimers and other dementing diseases, and public education has been one of the primary functions of these task forces and committees. Almost all of the task forces and committees have issued reports that provide information about dementia and services for people with dementia. 3 Members of the task forces and committees also speak about these topics to community groups. In addition, most of the task forces and committees have sponsored public meetings that serve as educational forums as well as giving family caregivers and others an opportunity to testify about the problems they face in caring for a person with dementia. Some States, Ohio and Michigan among them, have developed or paid for the development of training manuals for family caregivers of people with dementia (528,618). Other States, including Georgia and Nevada, have funded or otherwise supported the efforts of Alzheimers Association chapters to develop and disseminate public education materials and programs (260,576). In Alaska, the Older Alaskans Commission has given grants since 1984 to the Alzheimers Disease Family Support Group (a private organization in Anchorage) to provide statewide public education programs about dementia and services for people with dementia (282,576). Alaska has many remote communities, so the Alzheimers Disease Family Support Group has used both teleconferences and printed materials to provide information about dementia to caregivers, providers, and others. Information and Referral Programs Information about and referrals to specific services and sources of funding for services in a community can be provided by telephone or in person. Most of the State information and referral programs are telephone programs. Some of the programs are intended to serve elderly people or people of all ages, and others are specifically intended to serve people with dementia. A 1988 survey by the National Association of State Units on Aging found that 32 States had a statewide toll-free telephone information and referral program for elderly people or people of all ages: 18 of the 32 programs were for elderly people, and the rem aining 14 were for people of all ages (577). The extent to which existing information and referral programs for elderly people or people of all ages meet the needs of people with dementia and their caregivers undoubtedly varies, but anecdotal reports suggest that many of the existing programs fall short in this regard. Such reports, in fact, were one impetus for this OTA study. Some States have tried to enhance the capability of their information and referral programs to serve people with dementia by requiring special training for the staff of the programs and by developing dementia-related materials for use by the programs. In Illinois, for example, the Governors Task Force on Alzheimers Disease has developed a special information packet for people who call the States 3For a list of tie r~orts published by State task forces and committees on Alzheimers disease and related disorders, see app. C.
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Chapter 7---State Programs and State and Community Service Systems That Link People to Services l 231 Figure 7-lA Brochure Publicizing the Public Education and Other Services of the New Hampshire Division of Elderly and Adult Services SERVICES OF THE NEW HAMPSHIRE DIVISION OF ELDERLY & ADULT SERVICES Call or write the Coordinator for Alzheimers Services at (603) 271-4687 for: A. D.R.D. l l l l l l l l l information and referral for families books, articles, and videotapes on loan guides to services in eleven N.H. region s information about specific family support group s bibliography on ADRD community education speaker s training workshop s consultation to service program s respite care services I Alzheimers Diseas e & Related Disorders New Hampshire Division of Elderly & Adult Services A public information service of The New Hampshire Division of Elderly& Adult Service s Department of Health and Human Services 6 Hazen Drive Concord, NH 03301 (603) 271-4667 SOURCE: New Hampshire Division of Elderly and Adult Services, A.D.R.D., New Hampshire Department of Health and Human Services, Concord, NH, 1988.
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232 Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias Figure 7-2A Resource Packet on Parkinsons Disease Produced and Distributed by the Kansas Department on Aging Parkinsons Disease GRANDPA HAS A DISEASE THAT MAKES HIM FORGET FIND OUT WHY. f ~.c // -{(f(;z ~J>, For information on j.< ) ) Alzheimers, Parkinson, k -] Huntingtons & Related \ Disorders call the Helpline ;,; .g~ ~Lk+=g: @/i;~; l-800 -432-3535 Statewide 296-4986 Topeka # c. -. \ Z/ ?L -, P+ h>, --$Z-; KANSAS DEPARTMENT ON AGING SOURCE: Kansas Department on Aging, Resource Packet: Parkinsons Disease, Topeka, KS, June 1988. telephone information and referral program for seniors about services for a person with dementia (345). As discussed below, by 1989, at least 14 States had established a statewide telephone information and referral program specifically for people with dementia. Many of the dementia-specific information and referral programs exist in addition to a States information and referral program for elderly people or for people of all ages. In Massachusetts, for example, the States Office of Elder Affairs has a statewide Alzheimers telephone information and referral program that it has operated since 1985 (121). The States Office of Elderly Affairs also has a separate telephone information and referral program for elderly people. Since 1988, Connecticut has funded a statewide Alzheimers telephone information and referral program through Info-Line, a United Way program (143). Before 1988, Info-Line responded to calls about services for people with dementia, but the new program provides special training about dementia and about services for people with dementia for Info-Line staff members who handle those calls. Texas has an Alzheimers telephone information and referral program that is operated by the State Department of Health. In 1988, the Texas Legislature mandated the development of a computerized information and referral program for people with dementia, and the Department of Health is developing that program. Pennsylvania, New Hampshire, Kansas, and Delaware provide dementia-specific telephone information and referral programs through the same agencies that administer their public education programs (see previous section). New Jersey funds a statewide dementia-specific information and referral program through its two Alzheimers diagnostic and assessment centers, and Florida funds information and referrals for people with dementia through its four memory disorders clinics. 4 New York and California also have statewide dementia-specific information and referral programs that are discussed in a later section of this chapter. North Carolina funds a statewide telephone information and referral program for people with Alzheimers disease and other dementias through the Duke University Medical Centers Family Support program (290). Two social workers and a secretary respond to approximately 200 calls a month and provide information about dementia, referrals to community service providers, and telephone counseling. The State-funded program also provides public education, professional and caregiver trainin g, and caregiver support groups. Wisconsin funds a statewide information and referral program for people with dementia and their families through the Alzheimers Information and dNew JerS@S centers and l?loridas memory &Ordm clinics are discussed along with other State regional Akhei.mers diagnostic and msessment centers inch. 8.
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Chapter 7--State Programs and State and Community Service Systems That Link People to Services l 233 Training Center, which is operated by the Alzheimers Association Chapter of Southeastern Wisconsin (263,410). 5 The center maintains a computerized database of all the dementia-related services in the State, organized by county. Callers, who include family caregivers and health care and social service professionals who work with dementia patients and their families, can access the information and referral program through a toll-free number. In addition to providing information and referrals, the center develops and distributes educational materials and provides tr aining for professionals and caregivers. The Missouri Division of Aging has both a statewide telephone information and referral program for elderly people and a statewide telephone information and referral program for people with Alzheimers disease and their caregivers (219). Those programs are described inbox 7-A. Anecdotal reports suggest that some caregivers of people with dementia prefer to call a dementia-specific information and referral program. Other caregivers may be reluctant to call a dementia-specific program because they are ashamed of their relatives cognitive impairment and prefer to call an information and referral program that serves elderly people in general. Still other caregivers may not consider calling a dementia-specific program because they do not think of the individualasaperson with dementia; probably this is especially likely if the individual has physical impairments in addition to dementia. The Missouri system with its two telephone numbers, advertised separately but answered by the same staff (all of whom have received training about dementia and services for people with dementia) is a creative way of providing information and referrals for caregivers who have any of the three perspectives. The close working relationship between the State programs and the Alzheimers Association chapters is another positive feature of the Missouri system. In addition to maintaining telephone information and referral programs, some States have published resource directories that list available services for people with dementia. In 1988, for example, New Jersey published the third edition of its resource directory, Alzheimers Disease: A New Jersey Directory of Services for Family Caregivers and Health and Human Service Providers (601). Some States publish directories of services for elderly people, and these directories may also be helpful for people with dementia (374). In 1989, the Dementia Subcommittee of Michigans Chronic Disease Advisory Committee proposed the establishment of a statewide network of agencies that would provide information and referrals and a variety of other services for people with dementia and their caregivers (528). One component of the subcommittees proposal is the designation of one agency in each community as a center for information on dementia. According to the proposal, these centers would be the focal points for information about dementia in the community. They would be the local repository for printed and audiovisual materials about dementia, lists of speakers, and other public education materials. They also would assist families in locating and obtaining appropriate services (528). The Dementia Subcommittee anticipates that organizations, such as Alzheimers Association chapters, other voluntary organizations, AAAs, local health departments, and Community Mental Health Boards will apply to be designated as centers for information on dementia (528). The subcommittee proposes that it, along with several other groups, should select one organization to be the dementia information center in each community. The selection would be based on the applying organizations relative knowledge about dementia and services for people with dementia, their relative ability to maintain an up-to-date directory of available services, and evidence of support from other community agencies for their selection. The working group that developed the subcommittees proposal believed that although the centers for information on dementia would not receive any State funds, local organizations would nevertheless apply to be designated as centers because of the recognition and authority such designation would bring them (l). The subcommittees proposal suggests that if no agency or organization applies from a particular geographic area, the State could solicit applications from agencies and organizations in that area or ask a designated center in a nearby community to expand its catchment area (528). The working group that developed the subcommittees proposal debated the advisability of having the local centers for information on dementia Swismmfis ~efims ~o~on and TCenter is described at greater length in box 8-Gin ch. 8.
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234 Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias Box 7-AMissouris Information and Referral Programs for Elderly People and for People With Alzheimer's Disease The Missouri Division of Aging has both a statewide telephone information and referral program for elderly people and a statewide telephone information and referral program for people with Alzheimers disease and their caregivers. The information and referral program for elderly people gets about 10,000 calls a year. The Alzheimers Helpline was initiated in 1988, and received 100 calls the first day. Subsequently, the number of calls decreased somewhat. Calls to both of these Missouri information and referral programs are answered by the same staff. All staff members at these programs receive 4 to 5 hours of training by the Missouri Alzheimers Association Coalition. The training includes an overview of Alzheimers disease, including its causes and behavioral manifestations and its impact on family caregivers; reasons why caregivers of people with Alzheimers disease might call the information and referral programs; the kinds of questions these caregivers might ask potentially helpful services for people with Alzheimers disease; and procedures for handling emergencies (e.g., the patient is lost or uncontrollably agitated or the caregiver is sick or suicidal). When a person calls either of the Missouri information and referral programs about an individual with dementia, the program gives the person information about services and a referral to the Alzheimers Association chapter or support group nearest the persons home (Missouri now has Alzheimers Association chapters covering all counties in the State). The program also sends a followup letter to the Alzheimers Association chapter to which the caller is refereed unless the caller requests that no followup be made. The general elderly and Alzheimers-specific telephone information and referral programs of the Missouri Division of Aging both use a common computerized database of services. The database can be accessed at the Missouri Division of Agings central office. Since it can also be accessed through computer terminals in about 100 of the divisions local offices, it is available to case managers who work in those offices, The Missouri Division of Aging hopes that it will be possible in the near future to generate by computer the followup letters to Alzheimers Association chapters about callers who have been referred to them. SOURCES: B.L Forbis principal assistant to the director, Division of Aging, Missouri Department of Social Services, Jefferson City, MO, personal communication, Dec. 6, 1988, Apr. 5, 1989, and June 14, 1989; K. Higley, executive director, St. Louis Alzheimers Association Chapter, St. Louis, MO, letter to the Office of Technology Assessment, U.S. Congress, Washington, DC, Apr. 14,1989. provide gatekeeper-type outreach 6 and case manations, and public and private agencies that provide agement in addition to public education and information and referral (l). Including case management and outreach as functions of the proposed centers would have made it difficult for some of the local organizations that were already providing public education and information and referrals for people with dementia and their caregivers to qualify as centers, however, and the subcommittees final proposal did not require the centers to provide these functions (or even discuss the functions). The final proposal does recommend that the centers be able to contact service providers on behalf of dementia patients and their families, if necessary, and to follow-up to ensure that patients and families obtain needed services. Michigans proposed centers for information on dementia would be required to work closely with other individuals, groups, and agencies in the community, including physicians, voluntary associservices for-people with dementia (528). The local centers would also be required to work closely with the two other components of the proposed statewide network of agencies: regional centers and tertiary centers. According to the proposal, the regional centers would provide diagnosis, multidimensional assessment, care planning, short-term care management, and counseling for families. The tertiary centers would provide specialized diagnostic and assessment services for dementia patients with atypical or complicated symptoms and would conduct research, education, training, and autopsy programs. It is interesting to note that the Dementia Subcommittees proposal places the information and referral functions in the local centers for information on dementia and places the case management fictions in the regional centers (528). This is opposite to suggestions OTA has heard from other people who 6 The following section discusses gatekeeper programs,
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Chapter 7--State Programs and State and Community Service Systems That Link People to Services l 235 believe that although information and referral can be provided effectively on a regional or statewide basis, case management must be provided by local agencies (374,595). Outreach Programs ~ Outreach, as noted earlier, means case management agencies that administer Illinois Community Care Program, a statewide long-term care program that is discussed later in this chapter. Case Management Programs IMl tiEil using an active method to identify 1 people with dementia and caregivers who need assistance but are unlikely to respond to public educaices, 4) monitoring the services that tion programs or to contact an I information and referral program on their own. 7 The outreach programs that most closely match the needs of isolated people with dementia and their caregivers are gatekeeper programs that make use of the observations of individuals who interact with many people in the course of their regular activities-e. g., utility meter readers, mail carriers, apartment managers, police, pharmacists, grocers, and delivery persons. Gatekeeper programs train such individuals to identify isolated elderly people who may need assistance and to notify a central agency. The central agency then contacts the people, evaluates their needs, and refers them to services (97,320,456,688). The first gatekeeper program in the United States was established in 1978 by a community mental health center in Spokane, Washington. 8 Since then, gatekeeper programs have been established in many other jurisdictions, often as joint initiatives of the State department, division, or commission on aging, AAAs, and utility companies (320). Although these programs are not dementia-specific, they frequently identify and refer isolated people with dementia (97,320,456,685). Illinois has a statewide system of gatekeeper programs that are administered by the Illinois Department on Aging and local AAAs in conjunction with several utility companies and rural cooperatives. With the addition in 1989 of Commonwealth Edison in northern Illinois, the gatekeeper programs now cover the whole State (148). The AAAs provide training for the utility workers who are the gatekeepers and determin e which local agency should receive and respond to referrals from the gatekeepers. In some localities, the calls are handled by the AAA, whereas in other localities, they are handled by the T Case management, as noted earli1 er, is a process that includes five I l I r core functions: 1) assessing a clients needs, 2) plannin g care, 3) arranging and coordinating servare provided, and 5) reassessing the clients situation as the need arises. All States have at least one program that provides case management for elderly people, although the number of people who receive case management through some of the State programs is very small (354). Some States provide case management through an independent case management program; some States provide case management as a component of a program that also allocates services or funding for services; and some States provide case management through several different programs. The number of people with dementia who receive case management through State programs is not known. As noted in chapters 1 and 3, the implementation of case management functions varies depending on the type of agency that provides the case management, the other functions of that agency, and other factors. In State agencies that allocate services or funding for services, case management provided in conjunction with the administration of those benefits sometimes consists primarily of administrative tasks such as determining a clients eligibility for services and funding, authorizing the services and funding, and monitoring and accounting for them. Many of the case managers who work for such agencies perceive themselves not just as administrative agents but as professional helpers who assist clients in defining their service needs and locating and arranging appropriate services (47). OTA has no reason to dispute these case managers perception that the case management they provide has both administrative and clinical/advocacy components, although case management in such agencies is undoubtedly more likely than case management provided by an TAs not~ in ChS. I ~d 3, some programs that are called outreach programs by the agencies that provide t.he~ g., lectures given by agency staff to senior citizens or other community group%are considered public education programs in this report. s~e sw~e gat&e~~ program is discussed in box 8-C inch. 8.
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236 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias independent case management program to consist primarily of administrative tasks. A 1987 survey of the 50 States and the District of Columbia conducted by the Intergovernmental Health Policy Project found that States were paying for case management for elderly people with funds from many different sources (353,354). Some States were paying for case management as an optional Medicaid benefit (allowed since 1986) or through a Medicaid 2176 waiver (both these funding sources are discussed below); 33 States were paying for case management with Older Americans Act funds; 32 States were paying for case management with State general funds; and 23 States were paying for case management with Social Service Block Grant funds. The case management that States were paying for was administered at the State level by different agencies in different States and by several agencies in some States. These agencies include the State department, division, or office on aging, the State Medicaid agency, and the State department of health, social services, or human services (353,354). At the local level, the case management that States were paying for was provided to clients by a variety of agencies, including local offices of various State and county departments, city government agencies, AAAs, and many types of private agencies. Many States reported providing case management through several different local agencies. A few States reported contracting with individual nurses to provide case management. As of October 1987, 15 States were paying for case management as an optional Medicaid benefit (819). OTA is not aware of any data on the number of people with dementia who receive case management that is paid for as an optional State Medicaid benefit, but some people with dementia probably do receive this benefit. To be eligible for case management as a Medicaid benefit, one must meet the States Medicaid financial eligibility criteria, and the allowable levels of income and assets for Medicaid eligibility are low in some States and very low in other States. 9 The Medicaid 2176 waiver program was enacted by Congress in 1981 to allow States to apply for waivers of Medicaid regulations so they could provide a coordinated package of home and community-based services for individuals who otherwise would be at risk of nursing home placement or who are already in an institution (819). A State with a Medicaid 2176 waiver: l l l may use Medicaid funds to pay for services that are not ordinarily covered by Medicaid; may use Medicaid funds to pay for services for some Medicaid beneficiaries and not others, so that benefits can be targeted; and may use a higher income standard to determine individuals eligibility for services under the 2176 waiver program than is used to determine eligibility for other Medicaid services. As of February 1988, there were 45 Medicaid 2176 waiver programs serving elderly and disabled people in 36 States (some States had more than one such program) (819). Thirty-six of these 2176 waiver programs provided case management, and many of the waiver programs provided services that are sometimes needed for people with dementia, including homemaker services (28 programs), personal care (20 programs), adult day care (30 programs), and respite care (28 programs). In fiscal year 1986, Medicaid 2176 waiver programs across the country served a total of 78,000 elderly and disabled people (819). Ohios Pre-Admission Screening System Providing Options and Resources Today (PASSPORT) program has a Medicaid 2176 waiver to provide case management and an expanded package of services for people who are eligible for Medicaid-covered nursing home care but choose to remain at home (622). At the State level, the PASSPORT program is administered by the Ohio Department of Aging. At the local level, it is most often administered by AAAs. Case managers in the AAAs and other local agencies that administer the program provide an assessment and a service plan for each client, arrange the necessary services for the client, and monitor the service providers and the client on a continuing basis. The local agencies also contract $As of 1987, allowable mon~y income levels for Medicaid eligibility ranged from $253 in North @olina to $580 h c~orti ad $652 ~ ~~ Allowable assets levels ranged from $1,500 to $1,800 (826). Some States alSO allow Medicaid eligibility for people who are medically needy i.e., they have medical expenses that reduce their incomes to Medicaid eligibili~ levels. For further information on this topic, the interested reader is refereed to a 1987 publication of the Congressional Research Service, prepared by the National Governors Association, Medicaid Eligibility for the EIderly in Need of Long-Term Care (826).
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Chapter 7--State Programs and State and Community Service Systems That Link People to Services .237 with other community agencies to provide services for PASSPORT clients (623). As of September 1989, the PASSPORT program was in effect in only 12 Ohio counties and PASSPORT services were available only to people with income and assets low enough to qualify for Medicaid in Ohio. Ohio has applied to the Federal Government for a waiver to expand the PASSPORT program statewide and to make the programs services available to people with incomes up to $718 per month. People with monthly incomes above that amount would also be able to receive services through the program if they used their own income above $718 per month to pay for services (622). Medicaid 2176 waiver programs are undoubtedly a valuable resource in linking some people with dementia to services. On the other hand, many people with dementia (like many other elderly and disabled people) are not eligible for Medicaid 2176 waiver programs because they do not meet the eligibility requirements for Medicaid-funded nursing home care (e.g., requirements with respect to their medical condition, functional impairments, and financial resources). Two 1985 studies of Medicaid 2176 waiver programs that serve elderly and disabled people found that only 5 percent of the waiver program participants had a primary diagnosis of a mental disorder-a category that included cognitive impairments and senility (131,446). It is likely, however, that Medicaid 2176 waiver programs serve some people who are demented but who do not have a primary diagnosis of a dementing disorder. Existing Medicaid 2176 waiver programs such as the PASSPORT program in Ohio would not have the capacity to serve all people with Alzheimers disease and other dementing disorders even if the waiver programs eligibility criteria were changed to allow them to do so. In 1987, in commenting on Ohios PASSPORT program, the Ohio Department on Aging noted, for example, even if the entire caseloads of the four waiver sites were reserved for Alzheimers patients, the available resources could respond to less than 1 percent of the need of Ohios Alzheimers population (621). Pennsylvanias Long-Term Care Assessment and Management Program (LAMP) is similar in many ways to Ohios PASSPORT program, but it does not have a Medicaid 2176 waiver and is paid for solely with State funds (354). Pennsylvanias LAMP program offers case management and a range of services to elderly people who are eligible for Medicaid-funded nursing home care but choose to remain at home. The program is jointly administered by Pennsylvanias Departments of Aging and Public Welfare. The State of Pennsylvania contracts with local agencies to be designated as LAMP sites and to provide assessment and ongoing case management. For each client, the local LAMP agencies provide a comprehensive assessment, develop a plan of care, and arrange and monitor services. The LAMP sites contract with community agencies to provide other services. In general, the cost of services provided to LAMP clients must be less than 45 percent of the cost of nursing home care. State lottery funds are used to pay for services for LAMP clients when no other source of funding is available (505,562,651). A small study based on a probability sample of 27 people served by Pennsylvanias LAMP program in 1987 found that half had moderate or severe dementia (505). Any local agency can be designated as a LAMP site, as long as it is capable of carrying out the required functions and is not a service provider. LAMP sites determine peoples eligibility for nursing home care, so in selecting LAMP sites, Pennsylvania must evaluate whether a potential LAMP agency has any potential conflict of interest in performing that function. In 1987, all but one of the local LAMP agencies were AAAs, and in 1988, all the LAMP agencies were AAAs (652). States With Numerous Linking Programs Certain States, notably New York and California, have numerous State programs that link at least some people with dementia to services. The major State linking programs in New York and California are described in the following sections. The programs vary in terms of the kind of help they provide and the people they serve. Some of the linking programs in each State are dementia-specific, and others are not. In addition to programs that are funded and administered by the State, there are many other public and private programs and agencies in each of the States that link people with dementia to services. Some of these programs are listed at the end of each section to give a sense of the large number and the different types of linking programs in the State. It should be noted that although there are some positive consequences of having numerous linking
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238 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias programs in the same State, a multiplicity of linking programs may not always be a good thing, since the linking programs themselves can become confusing and add to the complexity and fragmentation of the already complicated service environment. New York State% Linking Programs To OTAs knowledge, New York State has eight State programs that link at least some people with dementia to services. New York States Department of Health administers two dementia-specific programs that link people to services: l the Alzheimers Disease Community Services Program, and a program of Alzheimers Disease Assistance Centers. New Yorks Alzheimers Disease Community Services Program, which began in 1986, provides grants to eight Alzheimers Association chapters to furnish public education and information and referral, in addition to training and support for caregivers of people with Alzheimers disease and other dementias. Since 1988, the State has also funded eight Alzheimers Disease Assistance Centers that provide diagnosis, assessment, and ongoing case management for people with Alzheimers disease and other dementias. Seven of the Alzheimers Disease Assistance Centers are located in medical centers of the State University of New York, and one is in a nursing home. Each Alzheimers Disease Assistance Center has an information clearinghouse that provides information about dementia and services for people with dementia. Telephone information and referrals are not the centers primary function, but they do respond to requests from anyone for referrals to services (608,248). New York States eight Alzheimers Disease Community Services Programs and eight Alzheimers Disease Assistance Centers are situated throughout the State (see figure 7-3), and anyone from any part of the State can use any of the programs or centers. New York States Department of Health considers that some areas of the State are not adequately covered by the existing programs and centers, however, and plans are under way to fund additional programs and centers (248). In addition to these two dementia-specific programs, New York also has at least six other State programs that are not dementia-specific but nevertheless link some people with dementia to services. One of the programs is the Nursing Home Without Walls Program (354,472). This program, begun in 1977, has had a Medicaid 2176 waiver since 1983. The Nursing Home Without Walls Program currently provides case management and in-home services for people of all ages who are sufficiently impaired to be eligible for Medicaid-funded nursing home care but choose to remain at home. At the State level, the program is administered by New York States Department of Social Services, Division of Medical Assistance. At the local level, the program is administered by a variety of community agencies. As of 1986, the Nursing Home Without Walls program existed in 51 of New York States 62 counties; the 95 local agencies that administered the program included home health agencies (46 percent), nursing homes (35 percent), and hospitals (19 percent). Expenditures for Nursing Home Without Walls clients are capped at 75 percent of the average annual cost of nursing home care in the State, but a 1987 State law raised the cap for people with Alzheimers disease to 100 percent of the cost of nursing home care (354). In addition to the Nursing Home Without Walls Program, New York States Department. of Social Services, Division of Medical Assistance, has another program that coordinates in-home and community services in order to maintain people at home who otherwise might be admitted to a nursing home. This program, the Community Alternative Systems Agency (CASA) program, has designated a single agency in certain communities to be the local entry point for assessment and ongoing case management for people who are eligible for Medicaid-funded in-home services. Most CASAs are county departments of social services or other county government agencies (122,354). New York States Medicaid program, like that in some other States, pays for case management (354). People can be eligible for Medicaid-funded case management without being so impaired that they are eligible for Medicaid-funded nursing home care, but they do have to meet Medicaids financial eligibility criteria. As of 1987, individuals living in the community had to have an income below $432 per month to be eligible for Medicaid benefits, including case management. People with higher incomes were eligible only if their medical expenses reduced their income to the Medicaid eligibility levels (i.e., they were medically needy).
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Chapter 7--State Programs and State and Community Service Systems That Link People to Services .239 Figure 7-3-Areas of New York Served by the States Alzheimers Disease Assistance Centers and Alzheimers Disease Community Services Programs ALZ NEW YORK STATE DEPARTMENT OF HEALTH HEIMERS DISEASE ASSISTANCE CENTE NETWORK CATCHMENT AREA NEW YORK STATE DEPARTMENT OF HEALTH COMMUNITY SERVICES PROGRAMS NETWORK CATCHMENT AREA m CAPITAL. DISTRICT~ iii C%imALw AcmA n NYC-A q PJINMACCWTV-A u ~Tm AcmA L, \ \ I Vk._H SOURCE: New York State Department of Health, Office of Public Health, Alzheimers Disease and Other Dementias Program, January 1990.
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240 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias New York States Department of Social Services, Division of Adult Services, pays for case management and in-home services for adults with incomes that exceed Medicaid eligibility levels (in 1987, up to 150 percent of the poverty level). This program is funded with Federal Social Services Block Grant monies and administered at the local level by county departments of social services (354). New York States Office on Aging funds two statewide programs that are administered at the local level by AAAs and provide case management and other in-home and community services for people who l l are over age 60 and not eligible for Medicaid: the Community Services for the Elderly (CSE) program, and the Expanded In-Home Services for the Elderly (EISEP) program (354). 10 AAAs in New York State also provide information and referrals, and some provide case management, using Federal Older Americans Act funds (354). In addition to State linking programs, New York has many other public and private programs and agencies that link people with dementia to services. They include the New York City Alzheimers Resource Center, ll Alzheimers Association chapters, community health centers, community mental health centers, hospitals, county and city government agencies, private social service and family service agencies, home health agencies, and adult day centers. Two federally funded programs in New York State also link people with dementia to services. One is the Monroe County Long-Term Care Program in Rochester, New York, which in 1988 was designated as one of eight demonstration sites for the Medicare Alzheimers Disease Demonstration. Like each of the other Alzheimers demonstration sites, the Monroe County Long-Term Care Program will provide information and referrals, case management, and in-home and community services for several hundred Alzheimers patients over a 3-year period beg inning in late 1989 (504). In addition, New York State has 2 of the 15 Alzheimers Disease Research Centers funded by the National Institute on Aging; the centers are located at Mt. Sinai School of Medicine and Columbia University, both in New York City. The centers are primarily biomedical research facilities, but they also provide educational programs for the public and information and referrals for people who are involved in their clinical research programs. Californias Linking Programs To OTAs knowledge, California has seven State programs that link at least some people with dementia to services. Three of the programs serve only or primarily people with dementia. First, Californias Department of Health Services funds a program of nine Alzheimers Disease Diagnostic and Treatment Centers (225,335). 12 The nine centers provide diagnosis, assessment, and medical treatment for people with Alzheimers and related dementias, conduct biomedical and clinical research on dementia, and train service providers. The centers provide educational programs for community groups and information and referrals for patients and family caregivers. One of the centers provides long-term case management. Three of the centers are located on university campuses; two are at VA medical centers; and the others are at a psychiatric hospital, a rehabilitation hospital, a community hospital, and a senior center. Second, Californias Department of Aging funds a program of Alzheimers Day Care Resource Centers that provide public education, information and referrals, and professional and caregiver education and training, as well as adult day care and respite care for people with dementia (5,460,714). As of 1989, there were 26 Alzheimers Day Care Resource Centers throughout California, administered by a variety of public and private health care and social service agencies. In 1990, 10 more centers will be added, bringing the total to 36 centers. Third, Californias Department of Mental Health funds a network of regional resource centers for the families and caregivers of brain-impaired adults. The centers, which are modeled after Family Survival Project in San Francisco, provide public education, information and referrals, case coordination, and other services for the families and other 10AS of 1$)8, the EISEP program served people with incomes between 150 and 250 percent of the POve@ level (354). 11rhe New York Civ Alfieimer*s ResoW~e Centm is dis~~s~ in box 8.A in ~h. 80 l~or additio~ information on Californias Alzheirners Disease Diagnostic and Treatment Centers, see the Section on lt@OXld AIAeimerS diagnostic and assessment centers inch. 8.
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Chapter 7--State Programs and State and Community Service Systems That Link People to Services l 241 caregivers of brain-impaired adults, the majority of whom have dementia. 13 As of 1989, there were 11 regional resource centers (including Family Survival Project) located throughout California (see figure 7-4). Four of the centers are administered by hospitals or rehabilitation centers; others are administered by an AAA, a Catholic Charities agency, and other health care and social service agencies. Most of the centers serve several counties. Eight centers have toll-free telephone numbers, and several have family consultants who are available to people in rural parts of the centers catchment areas (199, 200,405). The State of California has designated Family Survival Project to serve not only as the Bay Area Regional Resource Center but also as the Statewide Resources Consultant. In the latter capacity, Family Survival Project maintains an information clearinghouse on dementia and other conditions that cause brain impairment and publishes a newsletter, fact sheets, brochures, directories, and research reports about services for brain-impaired adults and their caregivers (199,200,405). It also refers callers to the regional resource center designated to serve their geographic area and responds to requests for information from callers outside the State. Since its inception as a task force of families and community leaders in 1976, Family Survival Project has lobbied, often successfully, for improved services for people with dementia, other brain-impaired adults, and their families. It maintains detailed records of services that are needed but not available to its clients. To a greater extent than any of the other agencies OTA studied in the course of this assessment, Family Survival Project uses its client records to point out to government officials and others the need for specific services. The development of Californias statewide network of regional resource centers, completed in 1988, allows Family Survival Project to compile information about patients, caregivers, service use, costs, and unmet service needs for the State as a whole. In addition to these three dementia-specific programs, California has four other State programs that are not dementia-specific but nevertheless link at least some people with dementia to services. The Multipurpose Senior Services Program (MSSP), which began in 1980, provides case management for elderly people who meet Medi-Cal (Californias Medicaid program) eligibility requirements for nursing home care but can be maintained at home with services (101 ,354,534). MSSP pays for in-home and other community services for its clients if the services cannot be funded through any other source. Total expenditures for MSSP clients are capped at 95 percent of the cost of nursing home care in the State. MSSP has had a Medicaid 2176 waiver since 1983. Federal funds provided under the waiver are channeled through the State Department of Health Services to the Department of Aging which administers the program at the State level. The Federal funds are matched with State funds. As of 1987, there were 22 MSSP programs in 19 of the 58 counties of California. The programs are run by county departments of health and social services, other county and city government agencies, AAAs, hospitals, and private, nonprofit agencies. The California Department on Aging also administers the Linkages program, which provides information and referrals and case management for elderly and disabled people who are at risk of nursing home placement but not eligible for nursing home care funded by Medi-Cal (Californias Medicaid program). In general, Linkages clients are less impaired than MSSP clients. Linkages is funded entirely with State money, and some funds are available to purchase in-home and other community services for Linkages clients (101,354). As of 1987, there were 13 Linkages programs in California. At the local level, the 13 programs were administered by a variety of public and private agencies: the City of Oakland Social Services Department; Community Care Management Corp. in Ukiah; Humbolt Senior Citizens Council in Eureka; Senior Care Action Network in Long Beach; Huntington Memorial Hospital in Pasadena; Altamed Health Services Corp. in Los Angeles; Mt. Zion Hospital and Medical Center in San Francisco; San Mateo County Department of Health Services; the San Diego County AAA; San Joaquin Department of Aging, Childrens, and Community Services; Jewish Family Services of Los Angeles; Monterey County Department of Social Services; and Westside Center for Independent Living in West
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Figure 7-4---A Brochure Publicizing Californias 11 Regional Resource Centers for the Families and Caregivers of Brain-lmpaired Adults Wherever You Live, Theres Help Resources for the Families and Caregivers of Brain-Impaired Adults Regional Resource Centers operating in California 425 Bush Street Suite 500, San Francisco CA 94108.(415) 434-3388, (800) 445-810 6 (CA) Serving Alameda, Contra Costa. Man n t San Francisco, San Mateo and Santa Clara Counties (Also State wide Resources Consultant) q Los Angeles Regional Resource Center for Caregivers of Brain Impaired Adults 3715 McClintock, University Park, MC 0191 Los Angeles, CA 90089 0191 (213) 743-8-ii, (800) 540-4442 (LA County only) Serving Los Angeles Count y continued George Deukmejian, Governor Clifford L. Allenby, Secretary California Health and Welfare Agency SOURCE: Family Survival Project, Wherever You Live, Theres Help, California Department of Mental Health, Sacramento, CA.
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Chapter 7--State Programs and State and Community Service Systems That Link People to Services l 243 Los Angeles. All but the last two agencies also run MSSP programs (101). 14 Another program of Californias Department on Aging, the SEED Community Long-Term Care Project 15 does not directly link individuals to services; instead, the SEED program encourages coordination of long-term care services in local communities, primarily through the development of integrated screening and intake procedures and the use of a uniform assessment instrument by different agencies that provide services (101,354,714). In 1986, the State Department on Aging designated 11 SEED communities. The SEED lead agency inmost of the 11 communities was the AAA, but in 2 communities, it was the county department of social services and in 1, the county department of health services. Of the 11 SEED communities, 9 have an MSSP program, and 7 have a Linkages program, but these MSSP and Linkages programs are not necessarily administered by the SEED lead agency. In some SEED communities, the program has served as a catalyst for the coordination of programs of the California Department on Aging (e.g., MSSP and Linkages) and the involvement of agencies that administer programs of the State Departments of Social Services and Mental Health, and other agencies. The California Department on Aging also funds a program of Community-based Respite Care Services in eight areas of the State. The local agencies that administer this program recruit and train respite care workers and provide information about and referrals to respite care for adults with chronic physical or mental impairments. Although the program is not dementia-specific, people with dementia and their caregivers are among its primary clients (460). The local agencies that administer the program include two AAAs, a hospital, a community health center, two senior citizens agencies, and two agencies that serve disabled people. Finally, the California Department of Social Services administers the In-Home Supportive Services (IHSS) program, which provides case management and in-home personal care and chore services for people of all ages with monthly income of $726 to $1,051 (depending on their degree of functional impairment). The program is funded with Federal Social Services Block Grant monies and other State funds. It is administered at the local level by county departments of social services (354). In the early 1980s, an attempt was made to consolidate long-term care services for elderly and disabled people in California under a single State department. In 1982, the California Legislature passed a bill (AB 2860) to create a State Department of Aging and Long-Term Care and to authorize the new department to pool funds from various sources to provide services for elderly and disabled people. The 1982 bill created a task force to make recommendations to the governor and the legislature pertaining to the implementation of its provisions. In the following year, however, agreements and compromises that had been worked out previously among the interest groups that had supported the bill broke down. The greatest disagreement occurred between aging and disability interest groups, each of which feared that implementation of the bill might reduce overall funding for services for its constituents. Because of the disagreement, the California Legislature passed a substitute bill (AB 2226) in 1984. The new bill created a Division of Long-Term Care in Californias Department on Aging and assigned that department primary responsibility for developing a long-term care system, but it abandonedat least temporarily-the goal of consolidating all long-term care services into a single State department. Instead, the bill authorized several initiatives to coordinate services at the community level (362,746). The Linkages and SEED programs described earlier were two of those initiatives (101,714). In addition to State-funded and/or State-administered linking programs, California has many public and private agencies that link people with dementia to services. They include Alzheimers Association chapters and other voluntary organizations that represent people with dementia and their caregivers; community mental health centers; community health centers; local government agencies; hospitals; private social service, family service, and home ld~~~ He~~ Semices, ~ ~~~~ he~th center ~ ~s ~gel= tit operates ~ MSSP program and a Linkages program, iS deseribed in box 8-E of ch. 8. 15when this proW~ was fust envision~, SEED Wm sel~t~ as ~ a~onyrn to describe the service-enriched areas that were to be the foeus of the program. The Department continued to use the name SEED when the approach was broadened to include cxxnrnunities with only modest or moderate resouree levels (714).
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244 Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias health agencies; and adult day centers. California also has 2 of the 15 Alzheimers Disease Research Centers funded by the National Institute on Aging; they are located at the University of California in San Diego, and the University of Southern California in Los Angeles. As noted in the discussion of New Yorks linking programs, Alzheimers Disease Research Centers are primarily biomedical research facilities, but they also provide educational programs about dementia for the public and information and referrals for people who are involved in their clinical research programs. Summary and Implications for a National System to Link People With Dementia to Services Many States have linking programs-i.e., public education, information and referral, outreach, and case management programs-that serve at least some people with dementia. The programs are diverse, but some generalizations can be made: l l l l Some States have dementia-specific information and referral programs (sometimes in addition to the States information and referral programs for elderly people or people of all ages). State outreach and case management programs generaIly are not dementia-specific, however. (Public education about dementia and services for people with dementia is, by definition, dementia-specific.) Dementia-specific State programs tend to be new, whereas many of the programs intended to serve elderly and disabled people in general have been in existence longer. Many, although certainly not all, of the dementiaspecific programs (primarily public education and information and referral programs) are programs of State departments, divisions, or commissions on aging. In contrast, case management programs, which generally are not dementia-specific, are administered and/or funded by a variety of State agencies. In many States, public education and information and referral are provided through the same program, but active outreach and case management are provided through other programs. Thus, the four functions identified by this OTA assessment as essential components of an effective linking system for people with dementia are not provided through the same program. Despite these generalizations, the main conclusion to be drawn from the preceding section is the diversity of existing State linking programs. They vary in terms of the State agencies that administer and/or fund them, the local agencies that implement them, the linking functions and other services they provide, and the people they serve. As noted at the beginning of this chapter, the diversity of existing State linking programs makes it difficult to design a national linking system that would build on rather than duplicate or disrupt the programs. Clearly, there is no single type of State agency that administers most of the existing programs and is therefore the obvious choice to administer a national linking system. State aging agencies (departments, divisions, commissions, etc.) probably administer more of the existing linking programs than any other type of State agency, but many other types of State agencies also administer these programs. Moreover, in many States, several State agencies administer linking programs. Each of the State agencies that administers a linking program has a constituency of clients that benefit from its program and of agencies and individuals that implement the program at the community level, all of whom have a stake in the continuation of the existing program. If Congress mandated a single category of agencies to constitute a national linking system, that decision would undoubtedly engender resistance from the State agencies that administer existing linking programs. Likewise, such a decision would engender resistance from the agencies and individuals that implement the existing State linking programs at the community level but were not chosen to implement the national system. The preceding discussion of State programs that link people to services focused attention on the States that have such programs. The number of States that provide and/or fund public education, information and referral, outreach, and case management programs that serve at least some people with dementia is impressive and is growing. On the other hand, it is also true that some States do not have programs that link people with dementia to services or have programs that only serve a small percentage of all people with dementia and their caregivers. All States have case management programs, for example, but many of the programs serve only people with very low income and people who are so ill or functionally impaired that they are eligible for Medicaid-funded nursing home care. Therefore,
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Chapter 7--State Programs and State and Community Service Systems That Link People to Services l 245 although many States have linking programs that serve at least some people with dementia, many people with dementia still are not served. In addition, since the four functions identified by this assessment as essential components of an effective linking system for people with dementia are not provided through the same program, some people with dementia and their caregivers fall through the cracks between programs. STATE AND COMMUNITY SERVICE SYSTEMS In addition to, or instead of, establishing public education, information and referral, outreach, and case management programs that are added to the existing service environment, some States and communities have made fundamental changes in the existing service environment by coordinating agencies functions and pooling funding sources to create a consolidated service system. These systems, through which people are connected to services, are often referred to as long-term care systems. They generally connect their clients to a range of services, including many of the health care, long-term care, social, and other services that may be needed for a person with dementia. Several topics related to State and community consolidated service systems are addressed in the following sections. The first topic considered is why some States and communities have created consolidated service systems. The second is what types of changes are involved in developing such systems. Also discussed below are the consolidated long-term care service systems in three States (Oregon, Wisconsin, and Illinois) and four communities. The concluding section of the chapter discusses some findings of long-term care demonstration projects that have influenced the development of State and community service systems. Each of these topics could be the subject of a full report. OTAs objective here is only to provide a brief overview of State and community service systems in order to point out some of the ways in which such systems differ from the linking programs described in the previous section of this chapter and to consider the current and potential role of such systems in linking people with dementia to services. For more information on State long-term care service systems, the interested reader is referred to the following publications: l l l Building Affordable Long-Term Care Alternatives: Integrating State Policy, published by the National Governors Association (586). State Long-Term Care Reform: Development of Community Care Systems in Six States, published by the National Governors Association (587). State Financing of Long-Term Care Services for the Elderly; published by the Intergovernmental Health Policy Project (353,354). OTAs analysis below draws heavily from these publications. Why Some States and Communities Have Developed Consolidated Long-Term Care Service Systems The States and communities that have developed consolidated long-term care service systems have done so for several interrelated reasons. One reason is to reduce the complexity and fragmentation of the service environment so that people can connect to the services they need (353,362,587). The extreme complexity of the service environment in many communities was discussed in chapters, 1 and 2. Health care, long-term care, social, and other services may be provided by many different agencies and individuals. Likewise, there are many potential sources of funding for services. Each service provider and funding source has complex rules that restrict what services are provided or paid for and who can receive them. Often, an individuals service needs cannot be met by a single agency, so the person must either interact with several different agencies or forgo needed services. By coordinating agencies functions and pooling funding sources, some States and communities hope to make it easier for people to connect to appropriate services. A second reason why some States and communities have developed consolidated long-term care service systems is to limit unnecessary use of nursing home care. In 1986, public spending for nursing home care amounted to $18.1 billion-87 percent ($15.8 billion) of which was from Medicaid (828). Because of the growth in the size of the elderly population-particularly growth in the age group over 85, which is most at risk of nursing home placementthere has been, and continues to be, concern that nursing home use will increase greatly and that Medicaid expenditures for nursing home care will rise accordingly (362,372). To address that
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246 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias problem, States have instituted a variety of measures. Many States have certificate-of-need programs to limit the creation of new nursing home beds. Many States have also initiated nursing home preadmission screening programs to evaluate nursing home applicants and divert those who can be cared for at home (666). In addition, some States and communities have developed consolidated service systems to facilitate the targeting of services to people at risk of nursing home placement, thereby enabling them to remain in their homes (362,372). A third reason why some States and communities have developed consolidated long-term care service systems is to create an organizational and administrative structure that allows for efficient and appropriate use of limited services and funds: l l l by targeting available services to the people who need them most, especially those at risk of nursing home placement; by avoiding duplication of local agencies efforts, particularly repeated assessments of the same person by each agency that provides services for the person; and by increasing administrative control and accountability for the use of public funds. A major objective of the States that have developed consolidated long-term care service systems is to shift some of the public funds now spent on nursing home care to in-home and community services (353,362,374,587). (As of 1987, more than 80 percent of Federal and State spending for long-term care for elderly people went for nursing home care, leaving less than 20 percent for in-home and other community services (353).) None of the reasons and objectives just cited are incompatible with the goal of linking at least some people with dementia to appropriate services. The fact that some State and community service systems focus on limiting the use of nursing home care and targeting services to people who are eligible for or at risk of nursing home placement means, however, that the linking functions performed by these systems often are not available to people who are not eligible for or at risk of institutionalization-ineluding many people with dementia. Changes Involved in Developing a Consolidated Service System The development of a consolidated service system may involve several different kinds of changes in agencies and procedures at the State and community level, including: the designation of a single State agency to administer all the Federal and State programs that pay for services; the designation of a single agency at the community level to administer services paid for by all Federal, State, and local government programs; the pooling of funds from different programs to pay for services; and the establishment of a uniform client assessment procedure, including the use of a common assessment instrument, for services paid for by various programs. Historically, each State has established agencies to administer health care, mental health, social service, public assistance, and other programs. Typically, the structure and functions of existing State agencies has been adjusted to incorporate new Federal and State programs enacted over the years. For each new Federal or State program that has been established, some States have created a new State agency; some have created a new division in an existing State agency; and some have expanded the functions of an existing State agency. The creation of new State agencies or divisions to administer new Federal programs has been fostered by the distinct and often inflexible rules and regulations that have accompanied each new Federal program (353). In 1987, the Intergovernmental Health Policy Project surveyed the 50 States and the District of Columbia to determine how they were financing and administering services for elderly people (353). The survey gathered information about State agencies that administer Medicaid, Medicaid 2176 waiver programs, the Older Americans Act, the Social Services Block Grant, State supplemental payments to elderly people receiving Federal Supplemental Security Income payments, and State general funds that pay for services for elderly people. The 1987 survey found that: l 1 State (Oregon) was using the same agency to administer all the Federal and State-funded programs and services that were studied,
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Chapter 7--State Programs and State and Community Service Systems That Link People to Services l 247 19 States were using 2 State agencies or divisions to administer the programs and services, 24 States were using 3 agencies or divisions to administer the programs and services, and 7 States were using 4 agencies or divisions to administer the programs and services (354). The 1986 survey did not ask about State agencies that admini ster mental health services or services for nonelderly disabled adults. In some States, those services, which may benefit people with dementia, are administered by still other State agencies. The designation of a single State agency to administer all the Federal and State programs that pay for services for elderly and disabled people requires a State to overcome substantial barriers barriers created by the inflexible rules and regulations of each Federal program, barriers created by organizational and turf issues that cause resistance to change in existing State agencies, and barriers created by concerns of various interest groups that the consolidation of programs and funding sources at the State level will reduce overall funding for the client population they represent. For these and other reasons, States that have developed consolidated service systems have moved slowly in merging administrative authority for different programs at the State level, and some of those States have instead created an umbrella State agency or an interagency coordinating group to oversee the different State agencies that admini ster the programs (587). The other three kinds of changes that may be involved in creating a consolidated service system the designation of a single agency at the community level to administer services funded by all Federal, State, and local programs, the pooling of funds from different programs to pay for services, and the establishment of a uniform client assessment procedure-also require overcoming barriers created by inflexible program rules and regulations, by organizational and turf issues that cause resistance to change, and by interest group concerns. States and communities that have developed consolidated service systems generally have moved slowly and incrementally in implementing these changes. Three other mechanisms are frequently part of consolidated service systems, but, unlike the four kinds of changes already discussed, these three mechanisms can be implemented by a single agency in a State or community without changing the structure or functions of other agencies. The three mechanisms are: l case management, l nursing home preadmission screening, and contracts with service providers. All State and community consolidated service systems include case management as a major component. In fact, consolidated service systems are sometimes referred to as case-managed systems. The role of the case manager in such systems is often quite different from the traditional case management role in which the case manager coordinates or brokers services from various community agencies for an individual client; in a consolidated service system, a case manager more often administers and allocates services that are already coordinated by the structure and functions of the system. Many analysts have noted the distinction between the coordination or brokering of services for an individual client from various community agencies and coordination of services through a service system (see, e.g., Austin et al. (47), Kodner and Feldman (423), and Zawadski (939)). That distinction is not always recognized, however, and some people wrongly assume that case management by itself creates a consolidated service system. State consolidated service systems generally include nursing home preadmission screening programs as a component. As of 1986,29 States and the District of Columbia had nursing home preadmission screening programs; in addition, some States had programs to coordinate or fund in-home and community services for people whom the preadmission screening program found ineligible for nursing home care (356). In 1987, a Federal law was enacted that required States to establish a nursing home preadmission screening program to identify mentally ill and mentally retarded people for whom nursing home placement is inappropriate (Public Law 100-203). OTA does not know how the preadmission screening programs that are developed in response to the 1987 law will function with respect to preadmission screening programs that predated the law; nor does OTA know how many of the new programs coordinate, provide, or fund in-home and community services for people who are ineligible for nursing home care. Clearly, however, not all nursing home preadmission screening programs are part of a consolidated service system, and by themselves, nursing home preadmission screen-
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248 Confided Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias ing programs do not create a consolidated service system. Lastly, most State and community consolidated service systems contract with agencies and individuals to furnish services to their clients. Some agencies that are not part of a consolidated service system also contract with other agencies to provide services for their clients. Although an agencys contracts with other service providers undoubtedly facilitate access to care for the agencys clients, contracts for services do not by themselves create a consolidated service system. Three States' Consolidated Service Systems Oregon, Wisconsin, and Illinois are three States that have gone farther than most in creating consolidated service systems through which people are connected to services. Their service systems are described briefly below. The emphasis in the discussion is on the changes that were made to develop each system and the difficult organizational and turf issues that had to be addressed in the process. Oregon's Consolidated Long-Term Care Service System In Oregon, all publicly funded long-term care services for elderly and disabled people are administered by a single agency at the State levelthe Division of Senior Services-and a single local agency in most communities (433). The Division of Senior Services and the local agencies administer Medicaid, a large Medicaid 2176 waiver program, Older Americans Act funds, Social Services Block Grant funds, and Oregon Project Independence, a State-funded program that provides in-home and community services for people over age 60. The development of Oregons consolidated service system began in the mid-1970s as a result of the States concern about increasing nursing home costs (434). In 1975, Oregon Project Independence was established by the State with the objective of substituting in-home and community services for nursing home care. In 1980, Oregon initiated a nursing home preadmission screening program and a long-term care demonstration project that paid for expanded in-home and community services in four counties; the main focus of Oregon Project Independence was coordination of the various agencies that provided and paid for services- getting everybody to talk the same language and plan the same actions (434). Late in 1980, the Oregon Department of Human Resources developed a proposal to consolidate the administration of aging and long-term care services in a single State agency. The proposal was rejected by other State and local agencies and by advocates for the elderly because they had not been involved in the planning process. Following the proposals rejection, the governor appointed a plannin g committee that met weekly for several months and involved more than 100 people in its planning process. The planning committees work and deliberations by the Oregon Legislature resultedina1981 law that created Oregons Division of Senior Services by merging the functions of the State aging agency and the long-term care division of the State Medicaid agency. Each AAA in Oregon that was part of local government (i.e., counties or councils of government) was given the option of becoming the single agency to administer all publicly funded services for elderly and disabled people at the local level. Under the 1981 law, AAAs that were private nonprofit organizations were allowed to administer Older Americans Act and Oregon Project Independence services, but a district office of the Senior Services Division still had to perform Medicaidrelated functions, including nursing home preadmission screening. Most AAAs that were given the option of administering all the services chose to do so. As of 1987, 11 of the Oregons 18 AAAs were administering all publicly funded services for elderly and disabled people (434,587). When the State law creating the Division of Senior Services passed in 1981, Oregon applied for a Medicaid 2176 waiver to increase the availability of in-home and community services. Oregons waiver proposal, which was based on the fourcounty demonstration project begun the previous year, was approved by the Federal Government in less than a month (434). The implementation of all these changes led to sigificant tension and disagreements among the State agencies, AAAs, service providers, and aging and disability advocacy groups in Oregon. In 1984, the State took the unusual step of hiring a consultant to conduct a formal negotiating process. That process, in which representatives of each group met for 1 day every other week for over 6 months,
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Chapter 7-State Programs and State and Community Service Systems That Link People to Services l 249 eventually resolved most of the major areas of disagreement (434,587). By combining Federal and State funds from various programs, the State of Oregon can provide case management and in-home and community services to many elderly and disabled people. Still, Oregons long-term care system does not serve every person who needs help. Services generally are targeted to people who are severely functionally impaired and people with low incomes, although some services are not means-tested or are provided on a sliding-fee-scale basis to people with higher incomes. Since 1983, the State of Oregon has provided case management for some elderly and disabled people who are not otherwise eligible for services due to their income or level of impairment (434,587). As of July 1989, Oregon had allocated funds for in-home and community services for some people with Alzheimers and related dementias who are under age 60 and have not been eligible for services previously (436). Wisconsins Consolidated Long-Term Care Service System In Wisconsin, publicly funded long-term care services are administered at the State level by three units of the Wisconsin Department of Health and Social Services: the Division of Health, which administers Medicaid, and two bureaus of the Division of Community Services, which administer all other programs that provide in-home and community services (354,587). The coordination of these services occurs primarily at the county level. County government agencies administer Medicaid, Social Services Block Grant funds, and several small Medicaid 2176 waiver programs, as well as the Community Options Program, a State-tided program described below. The State of Wisconsin has six AAAs that are administratively separate from county government but allocate Older Americans Act funds to county government aging units. In 1976, the Wisconsin Lieutenant Governors office initiated demonstration projects in four counties to substitute in-home care for nursing home care. Although the demonstration projects were considered unsuccessful by some people, in part because they were not administered by county government, they did create experience and knowledge about how to provide community care (587). In the late 1970s, Wisconsin had a very high ratio of nursing home beds to elderly residents as compared to the ratio in other States, and Medicaid spending for nursing home care was increasing rapidly. To address that problem, the State convened people from State and local agencies, researchers, advocates, and nursing home administrators. According to one observer, the meetings resulted in organizational fratricide and conceptual chaos: Within minutes, these official planning sessions evolved into the great ritual debates of long-term care policy. Health care providers and social service agencies quickly were accusing each other of failing to integrate. The partisans of a particular functional assessment tool rushed to ridicule the conceptual flaws and inaccuracies of everybody elses preferred tool The administrators of means-tested programs belittled the lack of targeting of non-means-tested programs. In one corner there was a centralization v. decentralization debate. And everybody who was not involved in the conceptual controversies was whispering to each other the real question, Who is going to get the contracts? (594). Having failed with this approach, the State of Wisconsin tried instead asking consumers of longterm care services--elderly and physically disabled people and families of developmentally disabled people-what kinds of services and programs they needed (594). State officials believe the system finally put in place in Wisconsin reflects these consumers preferences. In 1981, the Wisconsin Legislature enacted a moratorium on nursing home bed expansion. At the same time, it established the Community Options Program. The Community Options Program is a State-funded program that provides case management and in-home and community services for elderly, physically disabled, developmentally disabled, chronically mentally ill, and chemically dependent people, including both children and adults. It began in eight counties in 1982 and was extended to the whole State by 1986. The Community Options Program makes State funds available to counties to provide case management and services for people who are assessed as requiring nursing home care. The State of Wisconsin does not specify what services shall be covered, encouraging complete flexibility in meeting individual needs, but per person expenditures averaged across a countys caseload cannot exceed the States share of the cost of nursing home care for an individual (354,587).
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250 Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias Counties in Wisconsin can administer the Community Options Program through the county social services department (which administers other programs for elderly and physically disabled people) or through a county 51 board (which administers programs for mentally ill, developmentally disabled, and chemically dependent People). l6 As of 1987, 80 percent of counties in the State were using a county social services department to administer the Community Options Program, and 20 percent were using a county 51 board. The State of Wisconsin does not require that counties use a uniform client assessment procedure, but there is a recommended assessment instrument (587). Like Oregons system, Wisconsins long-term care service system targets services to people who are severely functionally impaired and people with low income (354,587). Services are provided free to individuals with income below a given threshold and on a sliding-fee-scale basis to individuals with incomes above the threshold. Assessment and care planning are provided to anyone who may need long-term care, without regard for the persons income. In 1986, the State of Wisconsin extended eligibility for case management and services through the Community Options Program to people in the early and middle stages of Alzheimers disease who are not yet severely functionally impaired. In addition, the State provides grants of up to $4,000 a year for families who are caring for a person with dementia, as long as the income of the individual and his or her spouse is $40,000 or less. In some cases, the grant funds are given directly to the families, but more often they are used to purchase services for them. Overall funding for the grant program is capped, however, so not all families who are eligible actually receive grants (587,918). As noted earlier in this chapter, Wisconsin also funds the Alzheimers Information and Trainin g Center, which is operated by the Southeastern Wisconsin Alzheimers Association Chapter. Illinois Consolidated Long-Term Care Service System In Illinois, publicly funded long-term care services are administered at the State level by three State agencies. Long-term care services for elderly people are administered by the Illinois Department of Public Aid (which administers Medicaid) and the Illinois Department of Aging (which administers Older Americans Act funds and Illinois Community Care Program, which provides case management and three services-homemaker, adult day, and chore services-for people over age 60 who are eligible for nursing home care). Services for disabled people under age 60 are administered by the Illinois Department of Rehabilitation. At the State level, the coordination of services administered by these three agencies occurs through an interagency coordinating group. At the local level, coordination occurs through case coordination units -public and private agencies designated by the State to implement the States Community Care Program (587). The development of Illinois long-term care service system began in 1977 with the initiation of pilot programs that provided in-home services in three areas of the State and the passage of a bill to provide certain in-home and adult day services on a statewide basis. At first, the services were administered by the Illinois Department of Public Aid. Because aging advocacy groups objected to the welfare stigma associated with that department, however, administrative responsibility for the services was shifted in 1979 to the Illinois Department on Aging. This department allocated funds for services to the States 13 AAAs; and the AAAs, in turn, provided case management and purchased services for eligible clients. That arrangement lasted 1 year and was then replaced by a system in which the State of Illinois contracted directly with community agencies to provide both case management and services for eligible people (587) Over time, waiting lists developed for services provided by Illinois Community Care Program (587). In 1982, a class action suit filed on behalf of people on the waiting lists resulted in a court decision that prohibited waiting lists for the program, in effect making it an entitlement program. To control the overall cost of the Community Care Program, the State of Illinois instituted sliding-scale fees for services. The State also obtained more funds for the program through a Medicaid 2176 waiver. Lastly, the functions of case management and service provision were separated to avoid the 16cOm& 51 bo~s~ ~ ~e IW~ ~uds desiyted lmder Chapter 51 of Wisconsins statutes to administer cornmuniv menti healh developmen~ disabilities, alcoholism, and drug abuse programs.
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Chapter 7--State Programs and State and Community Service Systems That Link People to Services .251 possibility that case managers who worked for agencies that provided services would authorize more of their agencies services than clients needed. The State of Illinois contracted directly with some community agencies to be case coordination units to provide client assessments, care plannin g, and ongoing case management, and the State contracted with other agencies to provide services. Case coordination units are not allowed to provide services for Illinois Community Care Program. As of 1987, one-third of Illinois 63 case coordination units were home health agencies; another one-third were senior service agencies; and the remainder were health care, mental health, family service, and social service agencies. All the case coordination units use a common client assessment instrument. They do preadmission screening, but they do not determin e financial eligibility for Medicaid, a function performed by local offices of the Illinois Department of Public Aid (587). Like Oregons and Wisconsins systems, Illinois consolidated service system targets long-term care services to people who are severely fictionally impaired and to people with low incomes. To be eligible for services through Illinois Community Care Program, individuals must have less than $10,000 in liquid assets. Individuals whose monthly income is below the Medicaid eligibility level receive services without any charge. Those whose monthly incomes exceed that level must pay a fee based on a sliding scale. The case coordination units receive Older Americans Act funds to provide assessments and care planning for people who are not eligible for the Community Care program (587). Case managers who work for the case coordination units receive special training about Alzheimers and other dementias (345). Four Communities > Service Systems Some communities have developed or are developing service systems to rationalize the local service environment, reduce duplication of efforts by agencies that deal with the same client, and help people connect to appropriate services. The following sections describe four such systems: l in Tulsa, Oklahoma; l in Linn County, Iowa l in three counties in northern New Hampshire; and in four counties in northwestern Ohio. The systems described differ in ways that reflect the characteristics and needs of the communities they serve and the types of agencies already in place in those communities. Two of the systems (the ones in Tulsa, Oklahoma, and Linn County, Iowa) serve elderly people in general, and two (those in northern New Hampshire and northwestern Ohio) are dementiaspecific. Each of the four systems was developed and is operated by a consortium of public and private agencies. Tulsas Long-Term Care Management Authority (Oklahoma) In 1987, Tulsa, Oklahoma, established the Nations first public long-term care management authority (557). Six agencies participated in its establishment: 1. the local AAA, 2. the State Medicaid agency, 3. the Veterans Administration (VA), 4. the city of Tulsa, 5. the county of Tulsa, and 6. the United Way. Tulsas Long-Term Care Management Authority was built on the success of an earlier effort to coordinate home care services by a consortium of local agencies (557). In 1983, five public and private agencies that were funding home health aide, homemaker, companion, and chore services in Tulsa agreed to establish a joint process to contract for the home care services they funded. The five agencies agreed on a uniform definition of each service, units of service, reporting requirements, and standards of care for the services, and in 1984, they issued a joint request for proposals to identify qualified home care providers. A committee with representatives from each agency and various citizen advisory groups reviewed the proposals from home care agencies and selected one agency to provide services that would be paid for by the five funding agencies. Subsequently, a home care assessment team was setup to monitor the quality of the services, and procedures were developed to ascertain clients satisfaction with services and the satisfaction of referral sources 17~e client satisfaction questio nnaire developed for this purpose is shown in figure 5-4 in ch. 5. 89-150 90 9
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252 Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias such as physicians and hospital discharge planners. 17 Based on the success of the previous effort, Tulsas Long-Term Care Management Authority was established in 1987 to create a single administrative structure that would pool funds and coordinate the delivery of services (557). The organizers of the authority hope that it eventually will coordinate the delivery of all services-acute and long-term care services; in-home, institutional, and communitybased services; and publicly and privately funded services. The Long-Term Care Management Authoritys first project is a pilot case management program. The pilot program is funded by the Federal Administration on Aging and is intended to provide extended case management for elderly Medicaid and VA clients and to coordinate services provided by various agencies for the same client. A computerized information management system has been developed for the pilot program. Linn County's Case Management Demonstration Project (Iowa) The Linn County Case Management Demonstration Project was established in 1981 by a consortium of public and private agencies that provide services for elderly people in Linn county, a rural county in Iowa (80). The agencies in the consortium include the local AAA, which initiated the project; plus the local mental health, family service, United Way, substance abuse, and community action agencies; two hospitals; three home health agencies; an adult day center; a senior center; and two county government agencies. These agencies use a uniform assessment instrument to evaluate elderly people who come to them for services. A case management team composed of representatives of the agencies meets regularly to review new cases, develop care plans, and assign responsibility for managing each new client care to one of the agencies in the consortium. In the first years of the Linn County Case Management Demonstration Project, the participating agencies took turns arranging and conducting meetings of the case management team (80,463). In 1986, a coordinator was hired for the project by the Linn County Department of Human Resource Development. Now the member agencies send completed assessment forms to the coordinator who arranges the teams bimonthly meetings. Having a project coordinator has increased the number of cases that can be reviewed and allows for more efficient client tracking. The project has developed a client appeal process and standards for case management, confidentiality, and quality assurance. In the view of its member agencies, the project has reduced fragmentation and duplication of services and minimized turf issues among the agencies. The North Country Alzheimers Partnership Project (New Hampshire) The North Country Alzheimers Partnership Project, which links people with dementia and their families to services in three rural counties in northern New Hampshire, was created in 1987 by a consortium of public and private agencies (551,614). The project is funded by a 3-year grant from the National Institute of Mental Health. The New Hampshire Divisions of Mental Health and Developmental Services and Elderly and Adult Services coordinate the administration and evaluation of the project. Individualized care plans are developed for clients of the project on the basis of a comprehensive in-home assessment conducted by nurses from local home health agencies and a social worker from the local Tri-County Community Action Agency. Ongoing case management is provided by Crotched Mountain Community Care, Inc., a private, nonprofit case management agency. Information and referral, public education, family support groups, counseling, and support services are provided by staff of the Tri-County Community Action Agency. The project contracts with six home health agencies to provide in-home services (551,614). The ACCESS Project in Northwestern Ohio The ACCESS Project in northwestern Ohio is a project operated by a consortium of 10 public and private agencies that have been receiving funds from the State of Ohio since 1987 to provide people with dementia and their caregivers in a four-county area case management, caregiver education, and in-home and adult day services (156,196). Family Service of Northwest Ohio, a private, nonprofit agency, is the lead agency for the project. State funding for the project was $55,000 for 7 months in fiscal year 1987, $110,000 for fiscal year 1988, and $88,000 a year for fiscal years 1989 and 1990. For in-home and adult IT~e client satisfaction questio nnaire developed for this purpose is shown in figure 5-4 in ch. 5.
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Chapter 7-State Programs and State and Community Service Systems That Link People to Services l 253 day services, the ACCESS Project charges fees to patients and caregivers based on a sliding scale. Everyone who receives services through the ACCESS project receives case management (196). The ACCESS Project initially charged patients and their caregivers fees based on a sliding scale for the initial patient assessment and ongoing case management, but eventually it stopped charging for these functions. The project summ ary gave the following rationale: Due to the fact that the concept of assessment and case management is ill-definied among the general public, we had a great deal of difficulty explaining to people why they had to pay for that service. As a result we consolidated assessment and the first several hours of case management time and packaged it into what we called a personal consultant model. We believed that the use of the personal consultant model would be more appealing to the types of caregivers we were getting. We also decided that the ACCESS Project would assume the cost of the service up to the first 6 hours of direct service provided to each client. Through trying this, we discovered that it was a bookkeeping headache to try to keep track of when the first 6 hours of direct service had run out, and once the first 6 hours had expired, we faced the same reluctance among the clients to pay for a service they still did not understand. At this time, we have totally stopped charging for that type of service and have assumed its cost in the project (196). Despite caregivers reluctance to pay for case management, a 1989 survey of 69 caregivers who had received ACCESS services found that the great majority of them valued the information and emotional support provided by the projects case managers (619). ACCESS has a strong caregiver education program. One component of the program is educational workshops conducted in various locations by the East Center for Community Health. The other component is in-home caregiver education, conducted primarily by a nurse from the Medical College of Ohio who uses a video cassette recorder and tapes about Alzheimers disease to provide individualized caregiver education about dementia and services for people with dementia (156). Summary and Implications for a National System To Link People With Dementia to Services The most important observation to be made about the State and community consolidated service systems just described is that such systems are extremely diverse. The systems do have common elementsincluding, in the State systems, a method of coordinating the administration of various programs at the State level and, in all the systems, methods for coordinating local agencies functions but there is great diversity even in these common elements. Oregon coordinates the administration of programs at the State level through a single State agency; Wisconsin uses a human service umbrella agency; and Illinois uses an interagency coordinating committee. Likewise, in each State, different types of agencies have been designated to administer services at the local levelAAAs in Oregon, county social service departments and county 51 boards in Wisconsin, and many different kinds of public and private agencies in Illinois. In each of the community service systems, the consortium of public and private agencies that created the system has devised different methods for assigning responsibility for an individuals care to a certain agency or assigning particular functions (e.g., client assessment, ongoing case management, provision of services) to specific agencies. The second most important observation to be made about the State and community consolidated service systems is that considerable time and effort were required to develop the systems, and difficult organizational and turf issues had to be resolved in the process. Most of the systems were developed incrementally. Among the obstacles they faced were: 1) inflexible requirements and regulations of the Federal programs that pay for services, and 2) administrative and organizational characteristics of State agencies that were established in the past to implement Federal program requirements and, once established, are hard to change (436). The State consolidated service systems described in the preceding sections differ from the community systems in several ways, although some of the differences are more in degree than in kind. First, the State systems coordinate services for elderly and disabled people in general, or, in the case of Wisconsin, all people who need long-term care; in contrast, some of the community service systems are
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254 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias dementia-specific. Second, the State systems generally coordinate only the functions of public agencies or private agencies under contract to public agencies; in contrast, the community systems coordinate the functions of both public and private agencies. Lastly, the State systems rely more on formal organizational structures and mandated procedures for coordination; in contrast, the community systems seem to rely more on the development of informal working relationships among individual service providers and agencies. In some ways, it may be easier to create a consolidated service system in a community than in a State because of the smaller number of agencies and individuals that must be involved in a community service system and because of the greater potential for dealing with organizational and turf issues through informal working relationships among individuals. On the other hand, communities lack the authority to allocate and target State funds for services and to designate a single agency at the local level to administer all Federal and State programs that pay for services. These functions require the involvement of the State. If Congress designated a single category of agencies to constitute a national linking system, States and communities that have developed consolidated service systems which are administered by agencies other than the designated agencies would have to change their systems or, alternatively, accept the existence of several systems-an outcome they have already spent considerable time and effort to avoid. Conversely, if Congress allowed each State to select the agencies that would constitute the linking system in that State, States that have developed consolidated service systems could incorporate the components of the linking system into their existing service systems. Presumably, some States would designate consortiums of agencies to constitute the linking system in some communities, particularly communities where a consortium of agencies has already established a service system that links people to services. Consolidated service systems reduce the complexity and fragmentation of the service environment for the people they serve and generally make it easier for those people to connect to appropriate services, but many of the existing systems do not serve all types of people with dementia. Some systems do not serve people under age 60 or 65, and many State systems focus primarily or exclusively on low-income people and/or people who are severely functionally impaired. Targeting public funds for services to low-income people and people who are severely functionally impaired seems entirely appropriate, but such targeting is not necessarily appropriate for linking functions. People with dementia and their families need help in linking to services at all stages of the patients illness, including the early stages when the patient is not severely impaired. Likewise, patients and families with all levels of income and assets and patients under age 60 or 65 need help in linking to appropriate services. Another reason why some consolidated service systems may not be completely effective in linking people with dementia to services is because they emphasize case management more than the three other components that OTA has concluded are essential for an effective linking system (i.e., public education, information and referral, and outreach). Although the local agencies that administer longterm care services in Oregon, Wisconsin, and Illinois also provide or contract for information and referrals (436,587), the primary emphasis in some systems that administer long-term care services is on providing case management for people who are eligible for the services. Service systems that emphasize case management more than other linking functions and provide case management primarily for low-income and severely impaired people do so partly because of resource limitations and partly because of the systems objectives and mission (i.e., they are responsible for allocating publicly funded services to people who are eligible for the services). Any of the systems could be modified to provide all four linking functions, thus expanding their mission and objectives to include linking all kinds of people to services. To do so would require more resources. Lessons From Long-Term Demonstration Projects for the Development and Operation of Long-Term Care Service Systems Beg inning in the 1970s, Federal, State, and local governments and private foundations sponsored many long-term care demonstration projects. The primary purpose of the projects was to demonstrate that making available expanded in-home and community services could reduce the use of nursing home care and ultimately reduce total expenditures
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Chapter 7--State Programs and State and Community Service Systems That Link People to Services .255 for long-term care. Case management was a central component of virtually all the demonstration projects. Recently, Kemper and colleagues analyzed the findings of 16 long-term care demonstration projects (406,407). 18 They found that the use of nursing homes was slightly lower among demonstration participants (i.e., the people who received case management and had access to expanded in-home and community services) than for members of control groups. On the other hand, the cost of case management and expanded in-home and community services for demonstration participants generally exceeded any savings realized because of participants lower use of nursing homes. Other commentators who have analyzed longterm care demonstration projects, including the projects analyzed by Kemper and colleagues, have reached essentially the same conclusions (see, e.g., Capitman (112), Hedrick and Inui (312), Piktialis and MacAdam (662); and Weissert (896)). These commentators have pointed out that in order to produce cost savings, case management and expanded in-home and community services would have to be targeted more precisely to people who without the services would be very likely to be admitted to a nursing home and that such precise targeting is probably not possible at present. In s ummarizing their findings and pointing toward future directions for research and policy debate, Kemper and colleagues said: Based on a review of community care demonstrations, we conclude that expanding public financing of community services beyond what already exists is likely to increase costs. Small nursing home cost reductions are more than offset by increased costs of providing services to those who would remain at home even without the expanded services. However, expanded community services appear to make people better off and not to cause substantial reductions in family caregiving. Policymakers should move beyond asking whether expanded community care will reduce costs to addressing how much community care society is willing to pay for, who should receive it, and how it can be delivered efficiently [emphasis added] (406). Even though the long-term care demonstration projects generally did not show that the government could save money by substituting in-home and other community services for nursing home care, many of the demonstration projects evolved into ongoing programs. 19 Furthermore, the long-term care demonstration projects produced valuable knowledge and experience in implementing long-term care service systems. That knowledge and experience, coupled with knowledge and experience derived from ongoing State and community service systems, can be helpful to other States and communities that are developing long-term care service systems. A particularly valuable source of information about long-term care service systems is the National Long-Term Care Channeling Demonstration (502). The Channeling demonstration, which was funded by the U.S. Department of Health and Human Services from 1980 to 1985, tested two case management models: a basic model, in which case managers helped clients locate and arrange services but had very limited funds to purchase services for them; and a financial control model, in which case managers not only helped clients locate and arrange services but had substantial funds to purchase services for them. Case managers in the financial control model were much more involved than case managers in the basic model in allocating services and funding for services. Therefore, some findings of the demonstration about differences between the two models are relevant to one of the major policy questions raised in chapter l whether the agencies that are selected to constitute a national linking system should also allocate services and funding for services. Case managers in the basic model, who were less involved lg~e 16 projects Kem~r and colleagues reviewed were: 1) the Worcester Home careprojec~ 2) National Center for Health Services Rese=hDay Care/Homemaker Experiment; 3) Triage; 4) Washington Community-Based Care; 5) the ACCESS project 6) Georgia Alternative Health Services; 7) Wisconsin Community Care Organization 8) On I-ok Community Care Org anization for Dependent Adults; 9) Organiza tions Providing for Elderly Needs; 10) the Multipurpose Stmior Semices Project (MSSP); 11) South Carolina Community Long-Term Care; 12) the Nursing Home Without Walls Program; 13) New York City Home Care; 14) Florida Pentasm, 15) San Diego J_ong-Term Care; and 16) the Channeling Project (406,407). l~~ge, fore~ple, evolved tit. Connecticut communiv Care, kc., a private nonprofit Cascmanagement agmcydiscussed ~ch. 1. on~ksefior Health Services, as discussed in ch. 8, continues as a consolidated service delivery system in San Francisco and is currently being replicated in several locations mtionwide. The Multipurpose Senior Services Project (MSSP) in California and the Nursing Home Without Walls in New York are ongoing programs that were discussed earlier in this chapter.
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256 Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias in allocating services and funding for services, were able to spend comparatively more time on directly helping clients, whereas case managers in the financial control model spent more time on administrative tasks and paperwork associated with ordering services (502). Ongoing case management cost more in the basic model ($51 per client per month) than in the financial control model ($35 per client per month). Obviously, however, the average cost to the demonstration of services arranged for clients was much lower in the basic model ($38 per client per month) than in the financial control model ($471 per client per month) (501). Both models reduced unmet service needs and increased informal caregivers confidence that they would receive needed services and their satisfaction with service arrangements, but these outcomes were greater in the financial control model than in the basic model (502). The Channeling demonstration project also had findings that bear on another policy question raised in chapter 1 whether the agencies that are selected to constitute a national linking system should or should not be service-providing agencies (i.e., agencies that provide services that go beyond linking functions). The Channeling demonstration project was implemented in 10 sites across the country. Six of the host agencies were AAAs (503). The other four host agencies were service-providing agencies. According to Channeling staff, case managers in the four service-providing agencies were generally able to maintain their independence and not did overuse their own agencies services in preference to other agencies services (30). This finding counters one of the primary arguments against designating serviceproviding agencies to constitute a national linking system. The Channeling demonstration project also generated information that pertains to the implementation of case management in a service system, including the impact of differences in the size of case managers caseloads and the relative strengths and weaknesses of nurses and social workers as case managers in such systems (34,503). Other useful findings of the demonstration pertain to procedures for selecting and contracting with community service providers and monitoring the costs and quality of services (503). 20 All of these findings are relevant to the design of a system to link people with dementia to services. CONCLUSION As described in this chapter, many States have programs that link at least some people with dementia to services, and some States and communities have service systems that link some people with dementia to services. The chapter has pointed out both the existence and the diversity of those programs and systemsfactors that have sometimes been given insufficient consideration in the development of Federal programs and policies for health care, long-term care, social, and other services for elderly and disabled people. As noted throughout the chapter, the diversity of State linking programs and State and community services systems makes it difficult to design a national linking system that will fit with the existing programs and systems. The next chapter describes 11 categories of agencies Congress might designate to constitute the linking system nationwide and discusses several reasons for designating a single category of agencies to constitute such a system. On the other hand, by designating a single category of agencies to constitute the system, Congress would risk duplicating or disrupting existing State linking programs and State and community service systems. For this reason, Congress might choose instead to allow each State to designate the agencies that will constitute the linking system in that State. There are important differences between linking programs and consolidated service systems. Linking programs are easier to establish than consolidated service systems because the programs can be established at the State or community level without substantially changing the structure, functions, or relationships among existing agencies and without engendering the intense organizational and turf issues that must be overcome in the process of creating a consolidated service system. On the other hand, linking programs do nothing to reduce the fundamental complexity and fragmentation of the service environment, so the problems that patients and families encounter in connecting to appropriate ~or more information about Channeling, the interested reader is referred to a publication of the U.S. Department of Health and Human Services, The Evaluation of the National Long-Term Care Demonstration: Final Report: Executive Summary (502). That publication sumrnari zes the project results and lists 25 additional evaluation reports on spec~lc aspects of the project and 12 tmining guides and technical assistance documents developed for it.
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Chapter 7--State Programs and State and Community Service Systems That Link People to Services l 257 services because of the complexity and fragmentation of the service environment remain. A few States and communities have gone a considerable way in creating consolidated service systems. Their purposes in developing these systems have been to reduce the complexity and fragmentation of services at the community level; to connect people to services they need; to gain control over public, and especially State, expenditures for health care and long-term care services; and ultimately to shift some of the public funds now spent on nursing home care to in-home and community services. These systems would be particularly likely to be disrupted if Congress mandated a single category of agencies to constitute the national linking system. Finally, the chapter has described linking programs and service systems that are intended to serve elderly people or people of all ages and linking programs and systems that are intended to serve only people with dementia. These programs provide alternate models for a national linking system. The pros and cons of mandating a linking system that is dementia-specific v. a system that is dementiacapable and dementia-friendly but not dementiaspecific are discussed in chapter 1.
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Chapter 8 Agencies That Might Constitute a Uniform National Linking System CONTENTS Page INTRODUCTION . . . . . . . 261 AREA AGENCIES ON AGING + ......... +.... 263 Overview of the Agencies . . . . 263 Who Is Served . . . . . . . 266 Linking Functions . . .+... . . . 267 Role in Allocating Services and Funding . 274 summary . . . . . . . . 274 COMMUNITY MENTAL HEALTH CENTERS .276 overview of the Agencies . . . . 276 Who Is Served . . . . . . . 278 Linking Functions . . . . . . 279 Role in Allocating Services and Funding . 282 Summary . . . . . . . . 282 COMMUNITY HEALTH CENTERS ........... 283 Overview of the Agencies . . . . 283 Who Is Served . . . . . . . 284 Linking Functions . . . . . . 286 Role in Allocating Services and Funding . 288 Summary . . . . . . . . 288 ALZHEIMER'S ASSOCIATIION CHAPTERS ... 289 Overview of the Agencies . . . . 291 Who Is Served . . . . . . . 292 Linking Functions . . . . . . 293 Role in Allocating Services and Funding . 297 summary . . . . . . . . 297 FAMILY SURVIVAL PROJECT ............... 299 Overview of the Agency . . . . . 299 Who Is Seined . . . . . . . 300 Linking Functions . . . . . . 301 Role in Allocating Services and Funding . 303 summary . . . . . . . . 303 REGIONAL ALZHEIMERS DIAGNOSTIC AND ASSESSMENT CENTERS .......... 304 Overview of the Agencies . . . +..... 304 Who Is Served . . . . . . . 308 Page Linking Functions . . . . . . 308 Role in Allocating Services and Funding . 310 summary . . . . . . . . 310 HOSPITAL-BASED GERIATRIC ASSESSMENT PROGRAMS ............. 31 1 Overview of Agencies . . . . . .. 312 Who Is Served . . . . . . . 314 Linking Functions . . . . . . 316 Role in Allocating Services and Funding . 317 summary . . . . . . . . 317 HOME HEALTH AGENCIES . . . . 318 Overview of the Agencies . . . . 318 Who Is Served . . . . . . . 320 Linking Functions . . . . . . 324 Role in Allocating Services and Funding . 327 summary . . . . . . . . 327 SOCIAL HEALTH MAINTENANCE ORGANIZATIONS . . . . . 329 Overview of the Agencies . . . . 329 Who Is Served . . . . . . . 330 Linking Functions . . . . . . 333 Role in Allocating Services and Funding . 335 Summary . . . . . . . . 335 ON LOK SENIOR HEALTH SERVICES ....... 336 Overview of the Agency . . . . . 336 Who Is Served . . . . . . . 337 Linking Functions . . . . . . 338 Role in Allocating Services and Funding . 338 summary . . . . . . . . 339 ADULT DAY CENTERS . . . . . 339 Overview of the Agencies . . . . 340 Who Is Served . . . . . . . 341 Linking Functions . . . . . . 343 Role in Allocating Services and Funding . 344 Summary . . . . . . . . 344
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Boxes Page 8-A. The New York City Alzheimers Resource Center . . . . . . . . . 269 8-B. The Care Management Program of the Region IV Area Agency on Aging in St. Joseph, Michigan . . . . . . . . . . . . . . 272 8-C. The Spokane Community Mental Health Centers Elderly Services Program, Spokane, Washington . . . . . . . . . . . . . . . 280 8-D. The Alzheimers Disease Project of Eastern Shore Rural Health System, a Community Health Center in Virginia . . . . . . . . . . . 287 8-E. The Linking Programs of AltaMed Health Services, a Community Health Center in Los Angeles, California . . . . . . . . . . . . . . 289 8-F. The Wisconsin Alzheimers Information and Training Center . . . . . . 290 8-G, The Cleveland Alzheimers Association Chapters Helpline . . . . . . 294 8-H. The Alzheimers Family Consultants Program of the Palm Beach County, Florida Alzheimers Association Chapter . . . . . . . . . . . 296 8-I. Californias Alzheimers Disease Diagnostic and Treatment Centers . . . . . 306 8-J. Illinois Alzheimers Disease Assistance Centers . . . . . . . . . 307 8-K. An Inpatient Subacute Geriatric Assessment Unit: The Geriatric Evaluation Unit at the Sepulveda VA Medical Center in Sepulveda, California . . . . . . 313 8-L. An Outpatient Geriatric Service: The Geriatric Ambulatory Consultation Service at Monroe Community Hospital in Rochester, New York . . . . . . . 314 8-M. An Outpatient Geropsychiatric Clinic: The Geriatric and Family Services Clinic at the University of Washington Hospital in Seattle, Washington . . . . . 315 8-N. AL-C*A*R*E*: A Dementia-Specific Project of Two Home Health Agencies in Washington, DC . . . . . . . . . . . . . . . 324 8-O. The Alzheimers Disease Program of Visiting Nurse and Home Care, Inc., in Hartford, Connecticut . . . . . . . . . . . . . . 328 8-P. The Family Respite Center in Falls Church, Virginia . . . . . . . . 342 Figure Page 8-1. Location of Area Agencies on Aging . . . . . . . . . . . . 264 Tables Page 8-1. Expressed Needs of People Who Called the Detroit Alzheimers Association Chapters Helpline and Responses Given by the Helpline, 1987 . . . . . . . . 295 8-2. Services Provided by Medicare-certified Home Health Agencies, 1986, N=5922 . . 319
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Chapter 8 Agencies That Might Constitute a Uniform National Linking System INTRODUCTION As described in chapter 7, all States have linking programs, and some States and local communities have service systems that help families and others locate and arrange services and sources of funding for services for people with dementia. These State and community programs and systems are extremely diverse and are administered by a great variety of agencies. Some of the programs and systems are dementia-specific, and others are not. If Congress established a national system to link people with dementia to services, it could allow States to decide which agencies should constitute the linking system in their jurisdiction. Under this option, each State could be given the choice of either: 1) selecting a single category of agencies to constitute the linking system statewide, or 2) selecting agencies of different types or a consortium of agencies to constitute the linking system in different local communities. An alternate approach that Congress might consider would be to establish a national linking system in which the Federal Government would select a single category of agencies to constitute the system nationwide. Whether Congress should establish a national linking system composed of a single category of agencies designated by the Federal Government or one composed of agencies designated by individual States is an important policy issue discussed in chapter 1. A system composed of a single category of agencies nationwide might be more recognizable to the public than a system composed of different types of agencies in different States and might be better suited to helping longdistance caregivers of people with dementia find services. One of the major drawbacks to this approach is that the designation of a single category of agencies to constitute the linking system nationwide would disrupt some existing State programs and service systems, particularly programs and systems that utilize agencies that are not selected or that are unique to a particular State or locality. This chapter analyzes 11 categories of agencies that Congress could, at least in theory, designate as the basis of a national linking system for people with dementia if Congress chose to establish a system composed of a single category of agencies nationwide: 1. area agencies on aging, 2. community mental health centers, 3. community health centers, 4. Alzheimers Association chapters, 5. Family Survival Project, 6. States regional Alzheimers diagnostic and assessment centers, 7. hospital-based geriatric assessment programs, 8. home health agencies, 9. social health maintenance organizations, 10. On Lok Senior Health Services, and 11. adult day centers. The Office of Technology Assessment (OTA) compiled this list by identifying categories of agencies that met the following criteria: l l l agencies in the category are currently engaged in linking at least some people with dementia to services; agencies in the category are discrete entities that could be identified and funded directly from the Federal level; and agencies in the category are currently part of a nationwide system of agencies (e.g., area agencies on aging, Alzheimers Association chapters) or could conceivably be expanded to serve the entire country (e.g., On Lok, Family Survival Project). OTA believes that the 11 categories of agencies analyzed in this chapter include all the categories of agencies that meet these criteria. Inclusion of a category of agencies in this analysis does not mean that OTA considers the category of agencies currently capable of constituting a national linking system for people with dementia, but only that the category of agencies meets the criteria for inclusion in the analysis. State and local government agencies, such as State or local departments of health and social services, are not included in the analysis in this chapter; the reason is that States and local governments determine the functions of their own agencies, and specific State and local government agencies could not be designated by the Federal Government
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262 l Confused Minds, Burdened Families: Finding Help for People With Alzheimers & Other Dementias to perform the linking functions. If Congress allowed States to designate the agencies that would constitute the linking system, States could designate any State or local government agency they chose. Some of the State and local government agencies that are currently involved in linking people with dementia to services are described in chapter 7. Each subsequent section of this chapter provides a brief overview of a single category of agencies and presents the available information about who is served by that category of agencies and the extent to which the agencies serve people with dementia. Each section then analyzes its particular category of agencies in terms of its current performance of the four functions OTA deems critical to an effective system to link people with dementia to services: 1. public education, 2. information and referral, 3. outreach, and 4. case management. As defined in this report, public education means providing general information to help people understand dementia and the kinds of services that maybe helpful for individuals with dementia. Information and referral means providing information about and referrals to specific services and sources of funding for services in the community. Outreach means using an active method to identify people with dementia and caregivers who need assistance but are unlikely to respond to public education programs or to contact an information and referral source on their own. Case management means assessing a clients needs, developing a plan of care for the client, arranging and coordinating services for the client, monitoring and evaluating services the client receives, and reassessing the clients situation as the need arises. An important policy question raised in chapter 1 of this report is whether the agencies that constitute a national system to link people with dementia to services should be agencies that allocate services and funding for services. In the analysis that follows, the extent to which each category of agencies allocates services and funding for services is indicated. OTA does not select any single category of agencies as the category that should be designated to constitute a national linking system. In fact, OTAs main conclusion from the analysis in this chapter is that no single category of agencies is currently capable of functioning effectively as a national linking system for people with dementia and their caregivers. As discussed in the following sections, each of the 11 categories of agencies has positive features that would contribute to its ability to serve as the basis of a national linking system, but each category also has one or more features that would have to be modified for agencies in the category to function effectively as such a system. The identification of features of each of the 11 categories of agencies that would have to be modified for agencies in the category to function effectively as a national system to link people with dementia to services is not intended to be critical of the agencies. Linking people with dementia to services is not the primary objective or even one of the primary objectives of some of the 11 categories of agencies, and each category of agencies has other important objectives. Moreover, all of the agencies operate within resource constraints. In the case of some of the categories of agencies, it would take a significant redirection of the agencies mission and resources to function effectively as a national system to link people with dementia to services. Such a redirection of those agencies mission and resources would compromise their ability to fulfill other objectives, including the provision of services for other client populations. The congressional committees that requested this study asked OTA to identify particula |