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Losing a million minds: confronting the tragedy of Alzheimer's disease and other dementias

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Title:
Losing a million minds: confronting the tragedy of Alzheimer's disease and other dementias
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United States. Congress. Office of Technology Assessment.
Publisher:
U.S. Congress. Office of Technology Assessment
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English
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534 p. : ill. ; 28 cm.

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Subjects / Keywords:
Alzheimer's disease -- United States ( LCSH )
Dementia -- United States ( LCSH )
Alzheimer's disease -- Government policy -- United States ( LCSH )
Dementia -- Government policy -- United States ( LCSH )
Alzheimer's disease -- Patients -- Services for -- United States ( LCSH )
Dementia -- Patients -- Services for -- United States ( LCSH )
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federal government publication ( marcgt )

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General Note:
This report involves collection of more than 10,000 pages of existing documents and preparation of more than 40 papers by outside experts under contract to OTA. Many of the OTA contract reports have been released to the National Technical Information Service or published elsewhere.

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University of North Texas
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University of North Texas
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This item is a work of the U.S. federal government and not subject to copyright pursuant to 17 U.S.C. §105.
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Y 3.T 22/2:2 M 66/2 ( sudocs )

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IUF:
University of Florida
OTA:
Office of Technology Assessment

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Losing a Million Minds: Confronting the Tragedy of Alzheimer's Disease and Other Dementias April 1987 NTIS order #PB87-183752

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Library of Congress Catalog Card Number 87-619805 For sale by the Superintendent of Documents U.S. Government Printing Office, Washington, DC 20402-9325 (order form on p. 539)

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Foreword Congressional concern about the plight of those suffering from Alzheimers disease and other dementias has steadily mounted for the past five years. This report grew out of a previous OTA report on Technology and Aging in America; it was requested by the following seven committees: l U.S. Senate: Committee on Finance, --Committee on Labor and Human Resources, Committee on Veterans Affairs, and Special Committee on Aging. l U.S. House of Representatives: -Committee on Energy and Commerce, Committee on Science and Technology, and Select Committee on Aging. In addition to the requesting committees, the House and Senate subcommittees that appropriate funds to the Department of Health and Human Services have frequently expressed interest, as have the Senate Committee on the Budget and the House Committee on Ways and Means. Members and staff of the requesting committees, other committees, and personal staff have been directly involved in identifying subjects that are covered in this report. The unusual length of this report is testimony to the diversity of issues associated with dementia that fall within the jurisdiction of various committees. Writing this report involved collection of more than 10)000 pages of existing documents and preparation of more than 40 papers by outside experts under contract to OTA. Many of the OTA contract reports have been released to the National Technical Information Service or published elsewhere (see appendix C). OTA staff also gathered information through discussions with more than 130 congressional staff and hundreds of othersincluding government employees at the State and Federal levels and representatives of more than 100 nongovernment organizations in the United States and other countries. The resulting document has been reviewed by the projects advisory panel and more than 50 other experts in various relevant fields. More than one hundred other individuals have reviewed specific chapters or early drafts. On behalf of OTA, I wish to express my thanks to the myriad of individuals who contributed either directly or indirectly to this study. It distills a mass of information into a form that I hope will be useful to policy makers. As with all OTA reports, however, the content is the sole responsibility of OTA and does not necessarily constitute consensus of or endorsement by the advisory panel or the congressional Technology Assessment Board. ,.. Ill

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. Advisory Panel for OTA Assessment of Disorders Causing Dementia Daniel Wikler, Chairman Program in Medical Ethics, University of Wisconsin Medical School Departments of Philosophy and History of Medicine John Blass Cornell University Medical College, and Director, Dementia Research Service Burke Rehabilitation Center Stanley Brody University of Pennsylvania Medical School Department of Physical Medicine and Rehabilitation, and Wharton School of Finance Donna Campbell Veterans Administration Geriatric Research and Education and Care Center Bedford, MA Gill Deford National Senior Citizens Law Center Los Angeles, CA Karl Girshman Hebrew Home of Greater Washington Lisa Gwyther Duke University Medical Center Center for the Study of Aging and Human Development Family Support Program Thomas Jazwiecki Office of Reimbursement and Financing American Health Care Association Purlaine Lieberman Equitable Life Assurance Society of the United States William Markesbery Professor of Pathology and Neurology University of Kentucky College of Medicine Paul Nathanson University of New Mexico Institute of Public Law Nancy Orr Hillhaven Corporation Special Care Units Diana Petty Family Survival Project San Francisco, CA Dominick Purpura Albert Einstein College of Medicine Betty Ransom National Institute on Adult Daycare, and National Center on Rural Aging National Council on the Aging Donald Schneider Management Health Systems Rensselaer Polytechnic Institute School of Management Jerome Stone President, Alzheimers Disease and Related Disorders Association Sallie Tisdale Writer and Long-Term Care Nurse Portland, OR Ramon Vane College of Human Services San Diego State University Philip Weiler Department of Community Health, and Director, Center for Aging and Health, University of California, Davis, School of Medicine Peter Whitehouse Alzheimers Neuroscience Center and Department of Neurology, Case Western Reserve School of Medicine; Division of Behavioral Neurology, University Hospitals of Cleveland 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 Dementia Project Staff Roger Herdman, Assistant Director, OTA Health and Life Sciences Division Gretchen S. Kolsrud, Biological Applications Program Manager Robert M. Cook-Deegan, Project Director Dana A. Gelb, Research Analyst L. Val Giddings, Analyst Katie Maslow, Analyst Teresa S. Myers, Research Analyst Authors Under Contract Nancy Mace, Consultant in Gerontology, Towson, MD Mary Ann Baily, George Washington University David Chavkin, Maryland Disability Law Center Catherine Hawes, Research Triangle Institute, North Carolina Support Staff Sharon Kay Oatman, Administrative Assistant Linda Rayford, Secretary Barbara Ketchum, Secretary Bryan Harrison, Office Automation Systems Analyst

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CONTENTS Chapter Page l. Dementia: Prospects and Policies . . . . . . . . . . 3 2. Characteristics of Persons With Dementia . . . . . . . . 59 3.The Diseases: Diagnosis, Treatment, and Scientific Background. . . . 87 4.The Family.. . . . . . . . . . . .................135 5. Making Decisions for Those With Dementia . . . . . ., .........169 6.Long-Term Care Services and Settings: An Introduction. . . . . . .201 7. Programs and Services That Specialize in the Care of Persons With Dementia ...241 8. Patient Assessment and Eligibility for Services . . . ................273 9. Personnel and Training . . . . . . . . . . ........329 10. Quality Assurance in Long-Term Care: Special Issues for Those With Dementia. ,369 11. Medicaid and Medicare as Sources of Funding for Long-Term Care of Patients With Dementia . . . . . . . . . . ........415 12. Financing Long-Term Care for Persons With Dementia . . . . . ..447 13. Basic Biomedical Research Policy . . . . . . . . . . .479 Appendixes Page A. The Characteristics of Nursing Home Residents With Dementia ...............499 B. Contractors and Workshop Participants . . . . . ...............506 C. Major Contracts Written for OTA and Where They Can Be Obtained ..........511 D.Glossary of Acronyms and Terms . . . . . . . . . . .514 Index . . . . . . . . . . . . . . . ......527

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Chapter 1 Dementia: Prospects and Policies "It may be two or three decades before a favorable treatment is available. If this is so, developing increasingly efficient health care delivery grows in importance on a more immediate time scale. David Drachman chairman of the Scientific Advisory Board, Alzheimers Disease and Related Disorders Association, July 28, 1986. Old family values do not need restoration simply because they have not diminished. The fact is that government and agency services supplement but do not supplant family services. The evidence points unmistakably to the need for family-focused services to alleviate the burden of parent care, These are basic to all other efforts and can only be made available by social policy. Alzheimers patients are not eligible for skilled care [as defined by Medicare and Medicaid], though they need the most skilled care of all. Elaine Brody before the Subcommittee on Health and Long-Term Care, Select Committee on Aging, and Subcommittee on Health and the Environment, Committee on Energy and Commerce, U.S. House of Representatives, Aug. 3, 1983. Most families are heroically fighting a devastating illness. Supporting them can be rewarding to professionals and, we believe, a legitimate goal for the Congress. We must be realistic and not oversell our abilities to dramatically cut costs or resolve problems, but cannot turn our backs on the families of 2 or 3 million people. Families can do so much for themselves; however, five things need the leadership of Congress: 1. ongoing support for research, 2. support for training of professionals, 3. provision of a variety of alternative respite services, 4. equitable funding for quality long-term care when it is necessary, and S equitable disability policies. Nancy Mace before the Subcommittee on Health and Long-Term Care, Select Committee on Aging, and Subcommittee on Health and the Environment, Committee on Energy and Commerce, U.S. House of Representatives, Aug. 3, 1983.

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CONTENTS Page Goals of public Policy Related to Dementia 4 Federal Policy Priorities . . . 5 Organization of the Report . . . 6 Reasons for Increased Interest in Dementia . . . . . . 6 Policy Interest in Dementia . . . 8 What Is Dementia? . . . . . 8 Symptoms of Dementia . . . 8 Disorders Causing Dementia . . 9 Course of the Illnesses . . . . 13 Magnitude of the Problem . . . 15 Prevalence of Dementia . . . 15 Costs of Dementia . . . . 16 Coordinating Services for Those With Dementia . . . . . . 22 The Care System . . . . . 22 Inventory of Services . . . . 23 Senior Services . . . . . 25 Acute Care Services . . . . 26 Long-Term Care Services . . . 26 Social Services . . . . . 28 Mental Health Services . . . 29 Groups of Special Concern . . . 30 Those Without Families . . . 31 Minority Groups . . . . . 31 Individuals Experiencing Onset of Dementia in Middle Age. . . 32 Rural Residents. . . . . . 33 Veterans . . . 0 . . . 33 Those With Low Incomes . . . 34 Caregivers . . . . . . 34 Policy Issues.. . . . . . . 36 Should There Be Special Programs for Dementia? . . . . . . 36 Diagnosis and Treatment. . . . 38 Legal and Ethical Concerns . . . 39 Education and Training . . . 40 Delivery of Long-Term Care . . 42 Page Biomedical Research . . . . 47 Health Services Research. ..,... . 48 Chapter 1 References . . . . 51 Tables Table No. Page l-1. Disorders Causing or Simulating Dementia . . . . . . 10 l-2. ICD-9 Codes for Disorders Causing Dementia . . . . . . 12 l-3. California State Listing of Acquired Cognitive Impairments . . . 13 l-4. Current and Projected Cases of Severe Dementia in the United States, 1980-2040 . . . . . . 16 l-5. Care Services for Individuals With Dementia . . . . . . 25 l-6. Care Settings for Individuals With Dementia . . . . . . 25 l-7. Federal Roles in Dementia Issues . 37 l-8. Federal Funding for Research on Dementia, 1976-87 . . . . 47 Figures Figure No. Page l-1. Current and Projected Cases of Severe Dementia in the United States, 1980-2040 . . . . . 3 1-2. Contribution of Elderly Age Groups to Projected Increase in Cases of Severe Dementia . . . . . . 17 l-3, 1986 Estimated Costs of Nursing Home Care . . . . . . . 18 l-4. Personal Payments for Health Care and Health Insurance. . . . 19 l-5. Out-of-Pocket Expenditures by Type of Service and Care, Estimated for 1986 . . . . . . . 28 l-6. Number of Veterans Age 65 and Over . . . . . . 33 l-7. Prevalence and Annual New Cases of Dementia, U.S. Veterans, 1980-2000. 34

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Chapter 1 Dementia: Prospects and Policies Disorders causing dementiathe loss of mental functions in an alert and awake individual will constitute a large and growing public health problem until well into the next century. Today, an estimated 1.5 million Americans suffer from severe dementia-that is, they are so incapacitated that others must care for them continually. An additional 1 million to 5 million have mild or moderate dementia (27). Ten times as many people are affected now as were at the turn of the century (79). The number of people with severe dementia is expected to increase 60 percent by the year 2000. Unless cures or means of prevention are found for the common causes of dementia, 7.4 million Americans will be affected by the year 2040-five times as many as today (see figure 1-1). The middle line on figure 1-1 assumes no change over time in the probability of developing severe dementia at a given age, and it does not hinge on new births but rather projects cases of dementia based on those already born. Further increases in life expectancy would increase the number of cases expected, and finding means to prevent dementing disorders would lower it. The public has only recently become aware of the problems posed by dementing illnesses. Dementia and Alzheimers disease (AD) have become household words only in the last few years. Efforts of national organizations, such as the Alzheimers Disease and Related Disorders Association (ADRDA), have emphasized the plight of families and publicized the problems faced by nationally famous individuals who have developed dementia (e.g., Rita Hayworth). The most prevalent disorder causing dementia, Alzheimers disease, has risen from relative obscurity to the cover of Newsweek magazine, the pages of Life, and prime-time television ((Do You Remember Love? a made-for-television movie aired by CBS in May 1985), One book on caring for patients with dementia, The 36-Hour Day (74), has sold over 500,000 copies, and several other books for the general public have found sizable audiences (2 1 ) 48,84). Figure 1-1 .Current and Projected Cases of Severe Dementia in the United States, 1980.2040 *r I 1 I I 1 1 1980 J 2000 2020 2040 Year SOURCE: P.S. Cross and G.J. Gurland, The Epidemiology of Dementing Disorders, contract report prepared for the Office of Technology Assessment, 1966. Interest among health and social service professionals has risen in parallel with public awareness. Medical attention to Alzheimers disease began to increase in the 1970s, catalyzed in 1976 by an editorial in a medical journal calling attention to the high prevalence and perniciousness of the disease (61) and by activities supported by various Federal research institutes (the National Institute on Aging, the National Institute on Neurological and Communicative Disorders and Stroke, and the National Institute of Mental Health). Dozens of professional books, special is3

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4 Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias sues of professional journals, and symposia proceedings on problems related to dementia have appeared since then. Two new journalsthe American Journal of Alzheimers Care, for caregivers, and Alzheimers Disease and Associated Disorders: An International Journal, for scientists and clinical investigators-deal specifically with this topic. Professional recognition of the problems posed by dementia is also reflected in (and partly caused by) increased funding for biomedical research and training. Federally funded research on dementing conditions has increased from $3.9 million in 1976 to an estimated $67 million in 1987. Federal funding has been supplemented by support from nongovernment organizations and foundations such as ADRDA, the American Federation for Aging Research, and the John Douglas French Foundation on Alzheimers Disease. Most recently, policy makers have become concerned with problems related to dementia because of the substantial costs of dealing with the diseases, and the relatively poor financial coverage of long-term care services needed by individuals with dementia and their families (14). GOALS OF PUBLIC POLICY RELATED TO DEMENTIA Consensus on the goals of public policy related to dementia is necessary as a background for policy change. Policy goals presuppose a set of accepted premises. One such premise is that individuals with dementia should be accorded the same respect for their person that they could have expected if they had not lost mental abilities. This does not imply, however, that the same decisions will always be reacheddecisions to forgo lifesustaining treatment, for example, may be more acceptable in the presence of irreversible dementia than without it. Another common assumption is that the family has the best interests of a dependent person with dementia in mind, and the best available information about what the patient would have wished. This is not always the case, but it is a starting point for many medical, financial, and legal decisions, and puts the burden of proof on those who believe that the assumption is unwarranted in a particular case. A final assumption is that the government has some role in protecting the rights and health of an individual with dementia, although the proper degree of government involvement in financing, coordinating, and directly providing services is subject to debate. The degree to which funds should be transferred from one generation to another is an underlying unresolved issue in many public policies. Transfers within families are generally left to the individuals involved, but many government programs either directly transfer funds from one group to another (e.g., Social Security and Medicare for older Americans, and education and recreation subsidies for the young) or attempt to enforce familial responsibilities in public programs (e.g,, requiring spouses to pay expenses incurred under Medicaid). The care of dependent adults has been a traditional concern, but the aging of the population has brought out the uncertainties and lack of consensus much more forcefully in recent decades, and public policies reflect these tensions. Overall policy goals can be roughly categorized into two groups: those intended to diminish the magnitude of the problem for future generations, and those directed at ameliorating problems already facing patients with dementia and those who care for them, which are relevant now and in the next few years. The long-term goals include searching for ways to eliminate the diseases causing dementia, or at least to diminish their severity and consequences. The ultimate solution for the problem of dementia would be a technical fix-a fully effective way to prevent all dementing diseases, or a drug or surgical procedure to reverse their symptoms. There is no assurance that such a solution is possible at all, and it is certainly not likely in the next several years. That does not detract from the long-term practical benefits of supporting research, but it does suggest that it would be unwise to rely exclusively on the hope of a cure for all the diseases. A balanced pol-

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Ch. lDementia: Prospects and Policies 5 icy will ensure support for research combined with efforts to address existing problemsto deal with those who now have dementia or will develop it before there are technical means to prevent or eradicate it. Near-term goals include training caregivers (family, volunteer, and professional), improving care practices in acute and long-term care, and devising means to pay for the catastrophic expenses brought on by dementing illness. Some policies can influence both immediate and long-term goals. Research on clinical care and service delivery, for example, can both improve current practice and assist future generations. Education raises general awareness and also improves the prospects for finding an ultimate solution. Several general short-term goals are repeatedly stressed in the literature dealing with the care of persons with dementia, although they are rarely stated explicitly. Some of these objectives are: l to preserve maximum independence of the affected individual; l to provide a continuum of carea full range of services available at different stages of illness and adaptable to changes in the individuals family, finances, and needs; l to efficiently coordinate the provision of care to maximize the match between available services and the needs and preferences of the individual and the family; l to preserve the dignity of the affected individual; l to reduce the severity of symptoms; l to treat medical problems that may worsen dementia or cause pain and suffering; l to cultivate preserved abilities and reduce the adverse effects of lost abilities; l to foster the integrity of the family and minimize family stress; and l to distribute the catastrophic costs of caring for those with dementia across the population without encouraging overuse of publicly financed services. Attaining these goals may not be possible in many cases, and consensus on how best to achieve them has proved elusive. The role of government in assuring quality and paying for long-term care, for example, is the subject of extensive debate, and current policies reflect this lack of consensus, FEDERAL POLICY PRIORITIES The Federal Government can influence the problems posed by disorders causing dementia in hundreds of ways, many of which are described in this report. Federal policy options range from direct intervention to indirect encouragement of others to act. The Federal Government can catalyze actions by State or local governments, citizens groups, or private organizations (e.g., by disseminating information about dementia, services, or methods of caring for patients). In other areas, the Federal Government has a more direct or exclusive role (e.g., support for biomedical research). The ways in which the issues arising from dementing illness are addressed will be subject to political and technical debate, but the objectives of public policy are likely to revolve around these priorities: l support for biomedical research, support for health services research, l education, l financing long-term care, l patient assessment and coordination of services, l increasing the range of services available, and l assuring quality care. Several of the priority areas overlap, and policies that affect one will necessarily have an impact on the others. Programs to educate consumers would, for example, depend on biomedical and health services for reliable information. Educated consumers would, in turn, be in a better position to assure quality care, obtain financing through existing mechanisms, plan their own finances prudently, and become knowledgeable about available services. Policies affecting financing would influence all other aspects of care because payment methods often determine the range of services made available; many observers believe, therefore, that policy change should focus first on financing. Yet no service system can work without all the pieces in place, including available

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6 Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias trained personnel and mechanisms for coordinatapproach, with greatest efforts centering on those ing services and assessing needs (whether formally areas for which the Federal Government is most or informally). responsible, is most likely to lead to improved care. Policy changes on one front will thus need to be assessed for their overall impact. A balanced ORGANIZATION The issues relating to these policy priorities are covered briefly in this chapter. Other chapters cover issues in greater detail, and contain more specific policy options, with discussions about the advantages and disadvantages of the options. Chapters 2 and 3 provide the technical background for the rest of the assessment: chapter 2 describes the symptoms and special problems related to dementing illnesses, while chapter 3 describes the diagnostic process and treatment methods for the various disorders, and briefly reviews what is known about the most prevalent disorders. Chapter 4 describes how families and other informal caregivers provide care for individuals with dementia. Chapter 5 highlights some of the difficult issues that arise when people develop dementia and can no longer make legal, financial, or medical decisions for themselves. Difficulties in making decisions about medical care are covered in much greater depth in a series of papers commissioned by OTA and reviewed at an OTA workshop. (Those papers-covering philosophical, legal, ethical, and practical aspects of making medical decisions will be published as a supplement to the Milbank Quarterly in 1987.) Chapter 6 begins the section on long-term care. It describes the general system of long-term carewhere it is provided and what it entails and leads into chapters 7 through 12, which deal with more specific aspects of long-term care, Chapter 7 reviews the emerging movement in nursing OF THE REPORT homes, day care centers, and home care services to design programs specifically for those with dementia. Chapter 8 reviews how diagnosis of dementia itself is insufficient to predict care needs, and emphasizes the difficulties in doing so. Chapter 9 covers professional staffing and training. It includes a brief discussion of physician qualifications. It emphasizes long-term care, and especially the training of nurses and nurses aides. Chapter 10 addresses the difficult issue of how to assure quality in the care provided in nursing homes and other long-term care settings. Two chapters deal with how long-term care is structured and financed for those with dementia in the United States. Chapter 11 describes how the Medicare and Medicaid programs are organized, highlighting aspects that are particularly relevant for those with dementia. Chapter 12 builds on that description and discusses the merits of various methods of paying for long-term care. It contains options for changing the financing system, including charity, various private methods, incentives for private savings, private and public insurance, tax incentives, modifications of existing public health programs, and major reform of public financing. The final chapter discusses Federal policies on biomedical research. Several other documents, based in part on activities connected with this OTA study, will be published elsewhere. These documents are listed in an appendix to this report. REASONS FOR INCREASED The new awareness of dementia can be traced to several sources, including the aging of the population, changing medical practices, and the activities of lay organizations. INTEREST IN DEMENTIA Life expectancy at birth has risen from 47.3 years in 1900 to 74.5 years in 1982 (105). More than four of every five Americans born this year can expect to reach age 65, compared with two

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C/7. 7Dementia: Prospects and Po/icies l 7 of every five in 1900. The oldest groups are expanding most rapidly. The prevalence of severe dementia rises from approximately 1 percent (ages 65 to 74), to 7 percent (ages 75 to 84), to 25 percent (over age 85) (27). The aging of the population, particularly the rising numbers of those over 85, thus results in many more cases of dementia. Longevity among those over age 65 has also increased dramatically in the last decade (105), adding further to the number of people at risk of developing dementia. These population trends partly explain the greater public awareness of dementia. As physicians and other health professionals see more elderly patients, medical problems associated with aging receive more attention. The creation of the National Institute on Aging in 1974 (Public Law 96-296) resulted in part from greater awareness about aging. But diagnostic classifications have also changed radically. For example, the standard classification system used now for dementiathe Diagnostic and Statistical Manual of the American Psychiatric Association, 3rd edition (DSM-III)-was published in 1980. Diagnostic labeling has changed as well. In the past, neurologists and psychiatrists commonly labeled dementia beginning before age 65 as presenile dementia or Alzheimers disease. Those whose symptoms appeared after age 65 were said to have senile dementia. This distinction has largely been eliminated, with both groups of patients categorized as having Alzheimers disease or dementia of the Alzheimer type. New terminology and shifting theories of causation have unified a large number of disorders under the term dementia. Until recently, many physicians believed that dementia was usually caused by atherosclerosis (a common disease of the blood vessels, often called hardening of the arteries). Many patients were said to have cerebral arteriosclerosis (a particular form of atherosclerosis) based on insufficient evidence. (This is still a common diagnosis in many nursing homes, reflecting outmoded diagnostic practices among referring physicians.) Work done in the United States and Europe from the late 1950s to the present, however, has found that the most common type of dementia is Alzheimers disease (66 percent according to aggregate data from several studies) (64). Several forms of dementia are due to vascular disease, and as a group they constitute the second most common cause of dementia. Vascular diseases causing dementia also have been differentiated and more specifically classified. Many public organizations have formed around issues related to dementing conditions. ADRDA, for example, was created in June 1979 by several family support groups that had sprung up independently throughout the country. It has since become the largest national organization focused on dementia and the needs of caregivers. ADRDA has also played an important role in attracting media attention to the problems faced by families. There are many other national foundationsthe John Douglas French Foundation and national organizations concerned with Huntingtons disease, Parkinsons disease, multiple sclerosis, head injury, stroke, and other brain impairments that cause dementia. Some organizations deal with specific diseases while others, such as the Family Survival Project in California (83), focus on issues common to brain impairment in adults caused by a multitude of diseases. Such nongovernment organizations have helped raise public awareness of the severe problems posed by dementia. Policymakers have also become more interested in dementia, because their constituents express concern and because many problems stemming from dementia affect and are affected by government activities. Finally, the economic costs of dementing illness have caused concern to those who must pay for the care of a loved one and to government administrators and legislators concerned about spending, particularly for long-term care. Individuals with dementia constitute perhaps the largest definable population group of those who require long-term care for extended periods, and payments for long-term care under the Medicaid program account for up to 10 percent of some State budgets (14).

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8 Losing a Million Minds: Confronting the Tragedy of A/zheimers Disease and Other Dementias POLICY INTEREST IN DEMENTIA Growing congressional interest in Alzheimers disease is reflected in the number of bills that specifically mention the conditionthree bills (having to do with designation of National Alzheimers Week) in the 97th Congress (1981 to 1982), and 26 in the 98th Congress (1983 to 1984). Several called attention to the problem by designating November as Alzheimers Disease Month, while others dealt with health care and biomedical research. During the 98th Congress, five Alzheimers disease research centers were established by the National Institutes on Aging. In the 99th Congress (1985 to 1986),38 bills were introduced. The major health care issues for patients with dementia have been more directly addressed than in previous Congresses. Another five research centers have been created, a prototype Alzheimers disease registry will soon be started, and several demonstration projects to deliver respite care will be funded. Federal executive agencies have also shown increased awareness of the problems caused by dementia. Most health and social service programs relating to this issue are administered by the U.S. Department of Health and Human Services (DHHS). In 1981, Margaret Heckler created a Task Force on Alzheimers Disease as her first act upon confirmation as Secretary of DHHS. The Task Force issued a report in 1984 (110), and continues to function under the current Secretary, Otis Bowen. In one article, then-Secretary Heckler noted: WHAT IS Dementia is a complex of symptoms that can be caused by many different underlying diseases. The process of classifying dementia requires that symptoms be identified and carefully assessed before the underlying disease or condition causing the dementia is diagnosed. Symptoms of Dementia Although loss of recent memory is its hallmark, the term dementia implies global impairment of mental functions. The symptoms can include loss of language functions, inability to think abstractly, The cost of AD is very high. Many Alzheimers patients are maintained in family homes. The total cost for nursing homes alone is estimated at over $13 billion per year; by 1990 that figure could exceed $41 billion. But the financial cost is in many ways secondary to the real toll that Alzheimers exacts. This disease robs society of the contribution of productive individuals with a wealth of accumulated wisdom and life experience. It also pulls into its eddy friends and family members who give up their own pursuits to look after their afflicted loved ones (46). The Veterans Administration (VA), military health services, and Indian Health Service are also concerned with dementia, because these agencies deliver health and social services to eligible populations, either directly or under contract to other providers. State governments have shown interest in the problems of dementia as well. At least 21 States have major legislative initiatives, including over 80 bills on Alzheimers disease (at least 20 of which became State laws in 1985 and 1986) (3,36,55). Several others have made administrative changes in the absence of new legislation. Some States (e.g., California, Maryland, Kansas, Texas, Minnesota, Rhode Island, and Illinois) have developed carefully planned and widely publicized approaches to problems of dementia. DEMENTIA? inability to care for oneself, personality change, emotional instability, and loss of a sense of time or place. Dementia is different from mental retardation because it indicates a loss of previous abilities. (Those with mental retardation have below average mental ability rather than a loss of previous capabilities; they can also develop dementia if their abilities decline further.) Dementia differs from delirium because delirium is associated with diminished attention or temporary confusion. Delirium implies a tran

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Ch. lDementia: Prospects and Policies 9 Photo credit: Office of Technology Assessment S (upper left) goes to the Family Respite Center in northern Virginia for day care (lower left). He is a graphic artist who now has Alzheimers disease. When asked to draw the hand pictured at bottom right, he draws the picture seen in the upper right. Ss drawing is smaller than the model and shows distortion of spacial relationships, incorrect counting of fingers, and misplacement of fingernails. Such errors are typical of those due to damage to the brain caused by Alzheimers disease. sient loss of mental abilities, as during intoxication or following acute head injury. It is not always easy to distinguish dementia from retardation or delirium, particularly among the very old or those about whom there is little available medical information. But differences are usually clear, and diagnostic classification relies on maintaining the distinctions, Disorders Causing Dementia More than 70 conditions can cause dementia (63). Identifying the symptoms leads to a search for the causethe process of diagnosis. The disorders covered in this report (see table 1-1) can be classified into several groups. Degenerative disorders are diseases whose progression cannot be arrested. The ultimate cause of most such diseases is not known, and these disorders cause progressive deterioration of mental and neurological functions, often over years. Alzheimers disease is by far the most prevalent degenerative dementia, found in 66 percent of all cases (64). The remaining disorders in table 1-1 are listed by cause. A few of them can be reversed following treatment, but truly reversible dementia occurs in only 2 to 3 percent of cases (64,80). In most cases, dementia is stable or progressive (although the severity

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10 Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias Table 1-1 .Disorders Causing or Simulating Dementia Dlsorders causing dementia: Degenerative diseases: Alzheimers disease Picks disease Huntingtons disease Progressive supranuclear palsy Parkinsons disease (not all cases) Cerebella degenerations Amyotrophic lateral sclerosis (ALS) (not all cases) Parkinson-ALS-dementia complex of Guam and other island areas Rare genetic and metabolic diseases (HallervordenSpatz, Kufs, Wilsons, late-onset metachromatic Ieukodystrophy, adrenoleukodystrophy) Vascular dementia: Multi-infarct dementia Cortical micro-infarcts Lacunar dementia (larger infarcts) Binswanger disease Cerebral embolic disease (fat, air, thrombus fragments) Anoxic dementia: Cardiac arrest Cardiac failure (severe) Carbon monoxide Traumatic dementia: Dementia pugilistic (boxers dementia) Head injuries (open or closed) Infectious dementia: Acquired immune deficiency syndrome (AIDS) AIDS dementia Opportunistic infections Creutzfeldt-Jakob disease (subacute spongiforn encephalopathy) Progressive multifocal Ieukoencephalopathy Post-encephalitic dementia Behcets syndrome Herpes encephalitis Fungal meningitis or encephalitis Bacterial meningitis or encephalitis Parasitic encephalitis Brain abscess Neurosyphilis (general paresis) Normal pressure hydrocephalus (communicating hydrocephalus of adults) Space-occupying lesions: Chronic or acute subdural hematoma Primary brain tumor Metastatic tumors (carcinoma, leukemia, Iymphoma, sarcoma) Mu/tip/e scierosis (some cases) Auto-immune disorders: Disseminated lupus erythematosis Vasculitis Toxic dementia: Alcoholic dementia Metallic dementia (e.g., lead, mercury, arsenic, manganese) Organic poisons (e.g., solvents, some insecticides) Other disorders: Epilepsy (some cases) Post-traumatic stress disorder (concentration camp syndromesome cases) Whipple disease (some cases) Heat stroke Disorders that can simulate dementia: Psychiatric disorders: Depression Anxiety Psychosis Sensory deprivation Drugs: Sedatives Hypnotics Anti-anxiety agents Anti-depressants Anti-arrhythmias Anti -hypertensives Anti-convulsants Anti-psychotics Digitalis and derivatives Drugs with anti-cholinergic side effects Others (mechanism unknown) Nutritional disorders: Pellagra (B-6 deficiency) Thiamine deficiency (Wernicke-Korsakoff syndrome) Cobalamin deficiency (B-12) or pernicious anemia Folate deficiency Marchiafava-Bignami disease Metabolic disorders (usually cause delirium, but can be difficult to differentiate from dementia): Hyperand hypo-thyroidism (thyroid hormones) Hypercalcemia (calcium) Hyperand hypo-natremia (sodium) Hypoglycemia (glucose) Hyperlipidemia (lipids) Hypercapnia (carbon dioxide) Kidney failure Liver failure Cushing syndrome Addisons disease Hypopituitarism Remote effect of carcinoma SOURCE: Adapted from R. Katzman, B. Leaker, and N. Bernstein, Accuracy of Diagnosis and Consequences of Misdiagnosis of Disorders Causing Dementia, contract report prepared for the Office of Technology Assessment, US: congress, 19SS. can often be reduced by treating other medical Alzheimers disease is marked by distinctive problems that exacerbate the symptoms), Alchanges and loss of nerve cells that can be dethough the diseases causing dementia are gener tected microscopically in brain tissue. The term ally not reversible, they are treatable. Treatment may actually refer to a group of diseases with pos for most cases centers on minimizing the effects sibly different causes and perhaps distinguished of the illness rather than attempting to return to by their symptoms, rate of progression, innormal mental function. heritance patterns, and age at onset. These are

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Ch. lDementia: Prospects and Policies l 1 1 grouped under one term because scientific understanding has not progressed sufficiently to distinguish them. Dementia caused by disease of the blood vessels (vascular dementia) accounts for the second largest number of cases in most studies, although the interpretation of such studies is being reevaluated to ascertain the degree to which vascular disease itself can cause dementia. It is clear, however, that vascular disease may worsen the symptoms of dementia. Some cases of dementia can be prevented: Toxic dementias and those caused by infections are clear examples. Once the brain is structurally damaged, however, dementia from these causes is usually permanent. Disorders that can simulate dementia, in contrast, include conditions for which treatment may eliminate dementia. Treatment of these can be instituted in order to restore mental function. Dementia will not invariably disappear with treatment, but it is more likely to do so than for diseases in the other categories. The difference between these diseases and the first category of disorders is the rapidity of improvement and the higher likelihood of complete recovery of mental functions. There is substantial overlap in the categories. Many older people suffering from depression, for example, show signs of dementia. Some reports have found that as many as 31 percent of those thought to have dementia have depression instead (94). Yet the rate of misdiagnosis is not as high today, because physicians have become more sophisticated in separating the various types of dementia and differentiating this condition from other mental symptom complexes. Those thought to be misclassified as depressed have been studied years later and found to be at much higher risk of eventually developing obvious dementia suggesting they had an underlying dementia at the time of misclassification (64). One author notes the continuum from normal mental function to severe dementia including intermediate points such as forgetfulness, at risk of dementia ) and various severities of clinical dementia (62). The overlap between disorders that cause dementia and those that simulate it cannot always be clearly defined with current medical knowledge, and it is sometimes difficult to pinpoint where individuals are on the continuum of mental capacity. Scientific discoveries might shift any one of the degenerative disorders into another category if a cause were found or a treatment discovered that could halt the loss of brain cells. The categories suggested in table 1-1 are intended to clarify and highlight conceptual distinctions rather than to imply that diseases fall neatly into separate categories. The distinctions among disease categories are nonetheless important for several reasons. Those with Alzheimers disease (with or without other conditions) constitute a large portion of patients with dementia. At present there is no cure, and treatment focuses on changing the environment and adapting caregiver behavior to meet the needs of patients, rather than on curing the dementia through medication or surgery. Making the specific diagnosis of Alzheimers disease precludes certain types of therapy, and also highlights the need to begin training caregivers about what to expect and how to deal with the expected worsening dementia. Diagnosis is therefore important in informing families about what to expect, but it is not sufficient to determine care needs without also assessing family support, severity of the disease, and the individual patients symptoms. Decisions about medical care, social services, and family expectations all hinge on accurate diagnosis. The diagnosis of dementing illnesses will be the topic of a consensus development conference at the National Institutes of Health July 6-8, 1987. Public policy priorities differ for those whose dementia can be eliminated. The paramount need of such patients is for accurate diagnosis and appropriate treatment, both of which are aspects of acute medical or mental health care. Public policies to identify these patients can reduce the number misdiagnosed with irreversible dementia and wrongly channeled into long-term care (64). The number of individuals with dementia whose symptoms can be treated and eliminated is estimated at 2 (80) to 3 percent (64), and the costs of unnecessarily providing long-term care for them are likely to offset the costs of diagnosis for all cases of dementia (64). Policy issues related to disorders causing progressive dementia, on the other hand, center on appropriate long-term care for those

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. 12 Losing a Million Minds: confronting the Tragedy of Alzheimers Disease and Other Dementias Table 1-2.ICO.9 Codes for Disorders Causing Dementia 094 094.1 290.0 290.1 290.2 290,3 290.4 291 291.1 291.2 294 294.0 294.1 294.8 294.9 310 310.1 310.9 331 331.0 331.1 331.2 331.3 331.5 331.6 331.7 331.8 331.9 333 333.4 437 437.0 437.1 437.2 797 Neurosyphilis General paresis Sanile and presenile organic psychotic conditions Senile dementia, simple type Presenile dementia Senile dementia, depressed or paranoid type Senile dementia with acute confusional state Arteriosclerotic dementia Alcoholic psychoses Korsakovs psychosis, alcoholic Other alcoholic dementia Other organic psychotic conditions (chronic) Korsakovs psychosis, nonalcoholic Dementia in conditions classified elsewhere Other chronic organic psychotic conditions Unspecified chronic organic psychotic conditions Specific nonpsychotic mental disorders following organic brain damage Nonpsychotic cognitive or personality change following organic brain damage Unspecified nonpsychotic mental disorders following organic brain damage Other cerebral degenerations Alzheimers disease Picks disease Senile degeneration of the brain Communicating hydrocephalus Creutzfeldt-Jakob disease Progressive multifocal Ieukoencephalopathy Cerebral degeneration in other disease elsewhere classified Other cerebral degeneration Unspecified cerebral degeneration Other extrapyramidal disease and abnormal movement disorders Huntingtons chorea Other and iii-defined cerebrovascular disease Cerebral atherosclerosis Other generalized ischemic cerebrovascular disease Hypertensive encephalopathy Senility without mention of psychosis Any patients have dementia, but category also includes some without demerit/a: 279 Disorders involving the immune mechanism 279.19 Acquired immune deficiency syndrome (AIDS dementia) 290 290.8 290.9 323 323.0 323.1 323.2 323.3 323.4 323.5 323.6 323.7 323.8 323.9 332 333 333.0 438 Senile and presenile organic psychotic conditions Other senile/presenile organic psychotic conditions Unspecified senile/presenile organic psychotic conditions Encephalitis, myelitis and encephalomyelitis Kuru Subacute sclerosing panencephalitis Poliomyelitis Arthropod-borne viral encephalitis Other encephalitis due to infection Encephalitis following immunization procedures Postinfectious encephalitis Toxic encephalitis Other Unspecified cause Parkinsons disease Other extrapyramidal disease and abnormal movement disorders Other degenerative disease of the basal ganglia Late affects of cerebrovascular disease already affected, and on research to identify new treatments or means of prevention. A different way to classify disorders causing dementia is found in the International Classification of Diseases (see table 1-2) (56). That system, called ICD-9, is used to code diagnoses in most hospitals and clinics, and is the starting point for diagnosisrelated group reimbursement under Medicare. The classification is well adapted for many specific disorders. No specific code exists for several disorders, however, and a large number of diagnostic categories that include many persons with dementia (e.g., someone with Parkinsons disease) do not separate individuals with dementia from those without it. Many diseases listed in table 1-1 do not have ICD-9 codes, and individuals with them would be classified in nonspecific categories. These shortcomings limit the usefulness of ICD-9 in refining epidemiologic studies because it is impossible to specify only those persons who have dementia. The State of California recently reviewed the various systems of nomenclature for dementing disorders (70). The analysts suggested grouping disorders under a new broad category acquired cognitive impairment) according to the subcategories noted in table 1-3. The confusion over terminology may be reduced if revisions of the two most widely used diagnostic classifications are made compatible. Revision of the ICD-9, to be called ICD-10, is scheduled for 1989. DSM-III is a set of guidelines for making diagnosis of mental disorders (7). It is the most widely used classification for the symptoms of dementia, and its criteria have been used in most recent studies. The revision of DSM-III will be called DSM-IV and will likely be made available after release of ICD-10. The two classifications are promised to be more compatible than DSM-III and ICD-9 (70). SOURCE: Irrtematlonal Claaaiflcation of Dkeaaes. 9th Revision Conference. 1975 (Geneva: World Health Organization), vol. 1, 1917-&d vol. 2, 1978: rn&ified by Cod/rrg C/in/es for /CD-9 CM, American Hospital Association, various Issues.

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Ch. lDementia: Prospects and Policies 13 Table 1.3.California State Listing of Acquired Cognitive Impairments Primary (cortical) degenerative dementiasDSM-III: Alzheimers disease Picks disease Degenerative dernentias with involvement of motor systems. Amyotrophic lateral sclerosis Cerebella degenerations Guam-Parkinson-dementia complex Huntingtons disease Parkinsons disease Progressive supranuclear palsy Other rare disorders: including Hallervorden-Spatz disease, Kufs disease, Wilsons disease, metachromatic leukodystrophy, adrenoleukodystrophy Vascular: Binswanger disease Cerebrovascular accident: including hemorrhage, stroke, aneurysms (recent and past) Cortical microinfarcts Lacunar infarctions Multi-infarct dementia Postanoxia or postischemiadue to: Carbon monoxide Cardiac arrest Strangulation, asphyxiation, or suffocation Traumatic: Intracranial injury without skull fracture: open and closed Intracranial injury with skull fracture: open and closed Fat embolism Post-traumatic brain syndrome: non psychotic psychotic Auto-immune: Disseminated lupus Multiple sclerosis Primary CNS vasculitis Central nervous system infections: AIDS (primary or opportunistic infections) Behcet syndrome Creutzfeldt-Jakob disease Encephalitis, herpes simplex Fungal, parasitic, and chronic bacterial meningitis, abscesses, and granuloma Neurosyphilis Postencephalitic dementia Progressive multifocal Ieukoencephalopathy Hydrocephalus, adult onset (normal pressure) Space-occupying lesions: Hematomas: including subdural, epidural, and intracerebral Metastatic carcinoma, Iymphoma, leukemia Primary brain tumors Toxic dementias: Alcoholic dementia Drugs: including neuroleptics, diazepam-related hypnotics, anticonvulsants, beta blockers, digitalis Korsakoffs syndrome Metallic poisons: including lead, mercury, arsenic, manganese Organic poisons: including solvents, organophosphates Psychiatric illness presenting as dementia: Chronic schizophrenia Conversion disorder Depression Ganzers syndrome Paranoia Nutritional disorders: Marchiafava-Bignami disease Pellagra Thiamine deficiency (Wernicke-Korsakoff syndrome) Vitamin B-12 or folate deficiency Metabolic disorders: Addison disease Cushing syndrome Hepatic failure Hypercalcemia Hypercapnia Hyperlipidemia Hypoglycemia Hypeand hyper-thyroidism Hypopituitarism Hypeand hyper-natremia Remote effects of carcinoma Uremia Sensory deprivation (agnosia) Other disorders Concentration camp syndrome Epilepsy Heat stroke Whipple disease SOURCE D.A. Lindeman, N.G. Bliwise, G. Berkowitz, et al., Development of a Uniform Comprehensive Nomenclature and Data Collection Protocol for Brain Disorders, Institute for Health and Aging, University of California, San Francisco, June 1986. COURSE OF THE ILLNESSES The course of a dementing illness varies from at work (rather than by a physician). Although one person to another as well as among the differsome disorders appear suddenly, mostincluding ent disorders. A few generalizations can be made, Alzheimers diseaseare insidious. People lose however, about progressive dementing illnesses. some mental ability, usually memory, or begin to Onset is usually noticed by the person with the show poor judgment or incompetence at work. disorder, family members, friends, or colleagues They often succeed in hiding their symptoms for

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14 Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias months or even years (if symptoms are mild), but the disability eventually becomes serious enough to merit medical investigation. A physician is typically consulted by the individual or family, initiating the diagnostic process. If the indvidual is seen early by a physician knowledgeable about dementia, the first visit will result in the scheduling of appropriate tests or referral to another specialist (usually a neurologist or psychiatrist) who will direct and monitor the use of diagnostic tests. An estimated 80 percent accuracy in diagnosis can be obtained through medical history and physical examination, while 90 percent accuracy can be achieved when these are supplemented by a battery of psychological and laboratory tests and by radiological examinations (63). Once diagnosis is completed, treatment can be started for some dementing conditions (and any other medical conditions detected during diagnostic evaluation). Medications may assist in managing some symptoms (93), the progression of which can be slowed or arrested in a few cases. The focus of most medical management, however, is family education training caregivers to adapt to the patient, simplifying the individuals living space, and referring relatives to family support services (121,122). Current medical management of dementia is based largely on anecdotal reports and clinical impressions rather than on solid data, since there have been relatively few clinical investigations (122). Drug treatment to improve intellectual function and memory has been a topic of intense investigation, but results have not yet shown clinically significant improvement. Drug management of behavioral disorders can benefit patients and ease the burden for caregivers, but it must be carefully planned and monitored (93,122). Diagnosis and treatment can continue for several years. Repeated visits for evaluation may be necessary to establish a final diagnosisparticu larly for cases of early dementia, unusual progression, or atypical symptoms. Treatment, including medication, may be changed from time to time in response to changing needs or adverse drug effects. An individual with dementia also often requires intermittent medical care for other illnesses. Because dementia is most prevalent among the very old, and because the very old are at risk of multiple medical disabilities, it is common for those with dementia to require attention for diseases of the heart, lungs, kidneys, or other organs. Their mental incapacity also places them at increased risk of falls, mistakes in medication, and household accidents. Individuals with dementia frequently need dental care. Those with dentures often lose them or break them; those with other dental problems may not become aware of them until they have become serious or caused undue pain. Most dementing conditions last years, often decades. One recent study found the average duration of illness, from first onset of symptoms to death, was 8.1 years for Alzheimers disease and 6.7 years for multi-infarct dementia (9). The time from diagnosis to death averaged 3.4 years for Alzheimers disease and 2.6 years for multi-infarct dementia, suggesting that patients typically show symptoms for over 4 years before a diagnosis is made. Recent improvements in professional education and increased public awareness may eventually shorten this period. The duration of a dementing illness is unpredictable, howeverAlzheimers disease can last up to 25 years. Patients with dementia generally die of some other illness (17)18)) and dementia is associated with increased overall mortality (64). Alzheimers disease is often cited as the fourth leading cause of death in the United States (although not reflected on death certificates or in official statistics). Such statements assume that each year the number of new cases roughly equals the number of deaths of those with Alzheimers disease (see discussion in ref. 79), and that shortened life expectancy is related to the presence of Alzheimers diseaseboth untested assumptions. Mortality caused by dementing conditions is, in any case, not the only consideration; of equal or greater concern are deterioration of valued human mental capacities, loss of autonomy, and catastrophic expenses caused by the ensuing need for longterm care. Long-term care refers to medical, mental health, and personal services rendered to those with diminished capacity for self-care due to illness. Brain damage caused by a disease process results

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Ch. 1Dementia: Prospects and Policies l 15 in loss of mental functions and dependency on others. Long-term care is often needed from the beginning of the disease, and can precede diagnosis. Individuals needs differ markedly. Some remain at home throughout the illness, while others benefit from day care or nursing home placement soon after symptoms are noted. Recent research has shown that the use of formal services is, in fact, more strongly correlated with characteristics affecting the person most responsible for taking care of someone with dementia than with severity of symptoms or other characteristics of the ill individual (23). Yet there would be no dependency on a caregiver if not for the illness. Since all individuals with dementia eventually become dependent (if their disease runs full course), they all require long-term care. Individuals typically need long-term care from onset to death, although the degree to which formal services are used varies. Most families keep someone with dementia at home for as long as possible, often despite extreme cost, health risk, and stress to themselves (12,20,23,37,124). Two general hypotheses about long-term care for persons with dementia are important to public policy, but their validity has not been confirmed. One posits that care needs intensify as the disease worsens until the afflicted person dies. The other suggests that most of the caregiving burden is due to changes in behavior and personality. As the dementia worsens, behavioral problems diminish as the individual becomes weaker, less mobile, and eventually mute. If the second hypothesis were correct, the need for care would be greatest at midcourse of the illness, and services to support families through the worst periods might forestall institutional placement. The complex interactions between the affected persons symptoms and stresses affecting the caregiver and family are equally important in predicting a need for formal long-term care services, but the crucial factors are only now being studied. The concept of a smooth progression of illness and dependency caused by it is illusory, with large variations in types of symptoms, rapidity and severity of progression of disease, and strength and resilience of informal supports. Those with dementia generally die after years of being dependent on others for their care. The cause of death is usually a disease of a different organ systempneumonia, heart disease, or kidney failure, for example. These individuals are logical candidates for hospice care in their last months, with an emphasis on allaying pain and suffering rather than prolonging life. Autopsy following death is often the only means of confirming what disease the person had, but the rate of autopsy in the United States has fallen dramatically, and an accurate diagnosis may never be ascertained. Failure to confirm a diagnosis at autopsy can interfere with accurate genetic counseling and analysis of the efficacy of medical care. MAGNITUDE OF THE PROBLEM The problems posed by disorders causing dementia will increase as the population ages and more people either develop a dementing disorder themselves or must care for a relative or friend. The magnitude of the problem can be gauged by projecting the number of people likely to be affected (the prevalence of dementia), estimating the costs of caring for those who now have dementia, and assessing some of the indirect burdens. Prevalence of Dementia Dementia can be divided into several categories by severity and type. Studies over the past several decades have varied widely in reported prevalence rates. These variations can be attributed to the different age groups studied, the inclusion or exclusion of people in long-term care facilities, degree of severity involved, methods of assessing mental function, or other sample characteristics. Most studies conducted since 1980 have followed DSM-III criteria (7), dramatically reducing the degree of variation from study to study (64). Recent studies show a relatively narrow range of prevalence of severe dementia, from 5 to 7 percent of those over 65, with a median of 6.5 percent (27). Although the criteria for severe dementia vary from study to study, the degree of

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16 Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias variation for this category is much less than if mild and moderate cases are also included. The extreme variation of results on mild and moderate cases makes projections of future prevalence impossible. Further, those with mild and moderate dementia in community studies are those about whom there is the greatest possibility of diagnostic error. For these reasons, projections of cases have been done only for severe dementia (see table 1-4). The total number of all cases can be estimated from these studies by assuming that for each case of severe dementia, probably at least one person and possibly up to three people have milder dementia and will eventually develop severe dementia if they live long enough. Prevalence is most often reported as a percentage of people age 65 or older affected at a particular time. Average prevalence figures mask significant differences among different age groups. As noted earlier, the prevalence of severe dementia among those 65 to 74 is roughly 1 percent, compared with 25 percent for those over 84 (27). Some authors have used the terms epidemic and rising pandemic to describe the projected increase in prevalence of dementia. Use of such terms is subject to misinterpretation, however, because of their associations with uncontrolled infection. Although the number of people with dementia will rise substantially over the next several decades, it will not do so explosively. (One demenTable 1-4.Current and Projected Cases of Severe Dementia in the United States, 1980-2040 (thousand cases) Age group 1980 2000 2020 2040 Under 65 . . . . . 78 88 150 150 65-74 . . . . . . 160 180 300 290 75-84 . . . . . . 550 860 1,000 1,700 Over 85 ...., . . . . 570 1,300 1,800 5,200 Total cases. ................1,400 2,400 3,300 7,30 0 ~heaa projections are based on prevalence of severe dementia of 1 percent ages 65 to 74, 7 percent 75 to 84, and 25 percent 85 and over (Cross and Gurland, 1966). Cases under 85 have been estimated as follows: the 75,000 current cases (Mortimer and Hutton, 1985) under age 80 correspond to 48 percent of cases in the next oldest cohort (ages 65 to 74) (Cross and Gurland, 19S6). Projections of future cases under 65 have been conservatively calculated as 50 percent of cases in the 65 to 74 cohort, for simplicity and to account partially for those aged 61 to 84. Another method wouid be to use the estimated 13.5 per 100,000 prevalence estimate among those 30 to 59 (Kokman, 1984, as cited in Mortimer and Hutton, 1975), but this is more complicated end more subject to error due to the shifting age structure within this very large age group. The table yieids estimates of cases under age 65 at the conservative end of the range reported (5 to 10 percent of all casesCross and Gurland, 1988). SOURCES: P.S. Cross and B.J. Gurland, The Epidemiology of Dementing Disorders, contract report prepared for the Office of Technology Assessment, U.S. Congress, 1988. tia, associated with acquired immune deficiency syndrome, is epidemic, but uncertainties about its prevalence, reversibility, and mortality preclude accurate projections.) Vascular dementia may drop in prevalence, paralleling the decline of stroke and hypertension. The prevalence of Alzheimers disease, because it accounts for the largest number of cases, will largely determine the overall prevalence of dementia. Alzheimers disease is expected to rise slowly in prevalence, in tandem with aging of the population. Studies show general agreement on the overall prevalence of severe dementia among the population 65 or older, but substantial uncertainty exists about mild and moderate dementia, the oldest age group, ethnic and racial subgroups, nursing home populations, and subtypes of dementia. Some data, for example, suggest that the risk of developing dementia after age 84 begins to decline (79); other data do not support that hypothesis (97), That could be due to real decline, inadequate reporting (since dementia is expected in the very old and therefore not recorded), or insufficient sampling of the very old cohort. Many of these groups about which there is little information are among those expanding most rapidly (see figure 1-2). Policy planning will thus require rigorous investigation of prevalence rates among the very old, minority groups, and nursing home residents, Costs of Dementia Although the exact costs of dementing illness to the Nation cannot be calculated, all agree that they are already high and bound to rise at least in proportion to the expected increase in prevalence. The many studies of costs noted in this section do not provide estimates that are sufficiently accurate and reliable to permit refined policy planning, but they are a starting point for analysis of spending for different services. Policies that affect the largest spending categories (informal care and long-term care) are those accorded high priority by caregivers as well as those concerned about government spending. Overall Costs Two studies have attempted to estimate the overall costs to the Nation of caring for those with

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Ch. lDementia: Prospects and Policies l 1 7 Figure 1-2.Contribution of Elderly Age Groups to Projected Increase in Cases of Severe Dementia 4 r I 65-74 1. I J 1980 2000 2020 2040 Year SOURCE: P S Cross and G.J Gurland, The Epidemiology of Demential Disorders, contract report prepared for the Office of Technology Assessment, 1986 dementia. The National Institute on Aging (NIA) sponsored a study that estimated total costs of just over $38 billion in 1983 (51). That study attempted to estimate only those costs exclusively due to dementia, but the projections (particularly those for the largest cost components) were contingent on small pilot studies. A review of these cost estimates, prepared for the State of California, concluded that costs of dementia were large but could not be precisely defined (75). A Battelle Memorial Institute study commissioned by OTA estimated $24 billion to $48 billion total costs (projected to 1985) (10). That study, too, tried to estimate only the costs specifically due to dementia, but it used different projection methods for estimating community and nursing home costs for long-term care. The estimates from these studies are similar in range, but they can be misinterpreted, Both the NIA and Battelle studies estimate costs of diagnosis, treatment, nursing home care, informal care, lost wages, and other indirect costs. Each component is large but cannot rigorously be projected, due to the paucity of relevant information, not study design. In addition to studies of overall costs, some researchers have estimated costs related to dementia stemming from diagnosis, medical treatment, nursing home care, and informal long-term care; these are discussed below. Costs of Diagnosis The costs of diagnosis can be estimated by assuming that 200,000 new cases of severe dementia will occur each year, and that at least as many mild and moderate cases will come to the attention of physicians for diagnostic evaluation. The estimated incidence of 200,000 is calculated by assuming 1.5 million affected people (27) and 7.5 year average duration, based on the average from one recent survey (9). That estimate is conservative, because it is based on figures at the low end of prevalence estimates, assumes only one diagnostic evaluation per case, and neglects those persons who are evaluated for dementia but are not found to have a dementing illness. The cost of diagnosis per case depends on the number of times a patient must be seen (the patient may need periodic reevaluation if dementia is mild or presents atypically), local medical costs, and whether the diagnostic testing is done on an outpatient or inpatient basis (i.e., during repeated clinic visits or in the hospital). outpatient diagnosis entails an estimated $1,000 to $2,000 for physician charges, laboratory tests, neuropsycholog ical testing, brain imaging studies, and ancillary services (64). Costs for the laboratory tests alone can range from about $154 to about $1,110 per patient (65). Those figures suggest that it costs at least $4 OO million to $800 million each year nationwide to diagnose disorders causing dementia. The Medicare programs costs for inpatient diagnosis differ according to geographic location, type of hospital, and discharge diagnosis. A hospital discharging a patient with the diagnosis of Alzheimers disease would be reimbursed from $6,8oo to $7,200 in most areas (87). If all cases were diagnosed following a single hospitalization, the national cost of diagnosis would be approximately $2.8 billion. Although no data show whether inpatient or outpatient diagnosis is more common, a survey of caregivers commissioned by OTA for this assessment did find that 30 percent of patients had never been hospitalized (123). Diagnosis in a hospital could have been done on a maximum

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18 Losing a Mi//ion Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias of 70 percent, although the number is likely much lower because most hospitalizations would be for purposes other than initial diagnosis of dementia. Hospital admission for diagnosis is not the norm in most centers; physicians who see many patients with dementia report that inpatient diagnosis is performed only for a small minority of patients. In fact, diagnosis as the sole reason for hospital admission would likely be disallowed for reimbursement under Medicare except in rural areas or special circumstances. Diagnosis is thus largely done on an outpatient basis, with attendant costs in the outpatient range rather than the much higher estimate for inpatient diagnosis. Given all the uncertainties, a firm figure for cost of diagnosis cannot be stated. A reasonable estimate for the national cost of diagnosis would be $500 million to $1 billion each yearhigh, but relatively small compared with long-term care costs. The diagnostic process is more likely to be covered by Medicare and private health insurance than long-term care is, and therefore requires smaller out-of-pocket payment by patients. Costs of Drugs and Medical Services After Diagnosis Once a diagnosis is made, medical management of patients with dementia requires continued visits to physicians, drug treatment of behavioral symptoms and ancillary medical problems, mental health services, and intermittent hospital care for concurrent illnesses. One study estimated these medical costs due to dementia at just over $10 billion in 1983 (51). Another study did not specify costs in dollars, but found that those with dementia were more likely to die during a hospital admission, had longer lengths of hospital stay, and were more likely to be discharged to a nursing home or require home assistance. The study also reported that: ,. Cognitive impairment at the time of admission may be regarded as a marker for sicker, less stable, more clinically complex patients. Such patients can be expected to fare worse than their mentally intact counterparts and to require more intense social service support if they survive to discharge (31). Costs of Nursing Home Care In 1984, total national expenditures for nursing home care reached $32 billion; for 1986, the estimate is $38.9 billion (8). The 1986 estimate includes $19.5 billion from individuals (50 percent), $500 million from insurance (1.3 percent), $10.4 billion in Federal funds (27 percent), $8.2 billion in State and local payments (21 percent), and $3 OO million (0.8 percent) from other sources (8) (see figure 1-3). Medicaid was the single largest payer for nursing homes (29). In 1980, Medicaid accounted for more than three-quarters of the total spent on long-term care under the six largest Federal programs (the other five are Medicare, Older Americans Act programs, State supplements to income, Title XX funds, and VA programs) (22). Nursing home care is a small part of Medicare, and the services covered are restricted to short stays after hospitalization. Nursing home payments under Medicare were only $600 million of $64.6 billion total Medicare outlays in 1984 (8), and accounted for 1.9 percent of the total spent nationwide on nursing home care. Nursing home payments surged from 1.7 percent of all health care expenditures in 1950 to 5.8 percent in 1965, and then to an estimated 9.7 percent in 1986 (8). Health care costs are significant, Figure l-3. 1986 Estimated Costs of Nursing Home Care (biiiions of doilars) Insurance 0.5 (1.30/o) Other 0.3 (0.8/0) Total = $38.9 billion SOURCES: R.H. Arnett j D.R. McKusick, S.T. Sonnefeld, et al., Projections of Health Care Spending to 1990, Hea/fh Care FInanclng Review 7:1-36, spring 1988.

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Ch. lDementia: Prospects and Policies 19 Figure l.4. Personal Payments for Health Care and Health Insurance 45 40 35 30 25 20 15 10 5 0 41.7 15.7 65-69 70-74 75-84 85+ Age SOURCE: ICF, Inc., The Role of Medicare in Financing the Health Care of Older Americans, submitted to American Association of Retired Persons, July 1985, table 21, adapted by the Office of Technology Assessment. especially for older Americans (see figure 1-4). Among those over 64, fully 9.9 percent of their expenditures go for health care (compared with 2.6 percent for those under 25, and 5.4 percent for those 55 to 64) (11). The difference is even more dramatic within the older age group, One study estimated out-of-pocket expenditures for health care and health insurance at 6.5 percent of income for those 65 to 69, compared with 15.7 percent for those 75 to 84, and 41.7 percent for those over 85 (54, table 21). The proportion of these expenditures directly caused by dementing illness is not known. The National Nursing Home Survey of 1977 found that 57 percent of nursing home residents had (chronic brain syndrome or senility (112, table 8) as noted by nursing home staff. Most people in these categories likely had what would now be called dementia, although some older adults with mental retardation might also have been misclassified as chronic brain syndrome. A recent sample of people admitted to nursing homes in Texas showed that 40 to 60 percent had diagnoses indicating dementia (103). A sample of 3,427 residents of 52 New York State nursing homes found 41 percent had diagnoses indicating dementia or extensively overlapping with it (32). Both samples used the admitting diagnosis (the accuracy of which depends on the quality of prior medical evaluation and varies widely from site to site) and are likely low for two reasons. First, dementia is commonly missed, especially in the very old, because it is expected, even by many physicians. Second, physicians wishing to facilitate nursing home placement are often willing to list other diagnoses rather than dementia because nursing homes may be less willing to admit dementia patients (58). Researchers at Johns Hopkins Medical School recently undertook the most reliable study to date, but it is small and preliminary. A research team performed thorough diagnostic investigations of 50 residents of a proprietary nursing home in Baltimore. The study found 39 (78 percent) had a dementing condition (an additional 7 residents had other mental diagnoses) (95). More studies of nursing home populations that include rigorous diagnosis could shed light on these disturbingly high figures, Several studies of dementing illness assume that costs can be calculated by taking the proportion of nursing home residents with dementia and multiplying by the overall costs of long-term care. That assumes that all long-term care for individuals with dementia is caused by their dementia, an assumption that creates many potential inconsistencies. One problem is best explained by analyzing an even larger disabled populationthose with arthritis. Symptomatic arthritis is roughly three times more prevalent than severe dementia in the population over 64. Its prevalence in nursing homes approximates that of dementia (112). Cost estimates that assumed arthritis caused nursing home placement would thus yield figures as high as those for dementia. Yet each disorder cannot account for half of all costs. Similar analyses could be done for residents with partial deafness, visual impairment, or incontinence, each highly prevalent in nursing home populations. The difficulty

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20 Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias in determining why an individual needs personal or nursing services limits the interpretation of simple cost projections. Although it is more plausible that dementia directly causes institutional placement more than arthritis does, no study has confirmed this. The rigorous costs studies that can be performed (as in the case of incontinence, for example) (82) presume carefully constructed models of care that do not exist for individuals with dementia. As a result, the fraction of nursing home costs due to dementia have not been estimated reliably. Yet cost projections for such care are important in considering policy changes that would promote delivery of services to persons with dementia, Information about costs and use rates for services would thus be quite useful for determining longterm care policy. One study attempted to estimate the costs of nursing home care due directly to dementia, and estimated that 3 percent of all elderly people in nursing homes were admitted because of such conditions, with subsequent costs of $1 billion [in 1983 dollars) (104). That figure is almost certainly a significant underestimate because of the strong incentives for underdiagnosis of dementia in nursing homes. That study also reported 36 percent higher labor costs for residents with dementia, in contrast to a 6 percent figure found in New York State (32). Which is the correct figure for the costs of caring for those with dementia is purely speculative; each may be accurate for its own sample. The New York figure, for example, included a large number of nursing home residents who did not have significant functional impairments, and who may have required less care. Given uncertainties in the accuracy of diagnosis, type of service provided, and sensitivity to uncontrolled economic factors, using current estimates to predict costs of public policies should be done only with great caution. Costs of Informal Long-Term Care Most studies report that the majority of longterm care is delivered outside nursing homesin board and care homes, adult day care centers, and patients homes. Costs are extremely difficult to estimate, and most overall projections necessarily underestimate this component. One recent study based on a national sample of long-term care recipients estimated that 1.2 million Americans were receiving informal care (100). That figure compares to the estimated 1.4 million people in nursing homes (26)54). Some authors have estimated that 70 to 90 percent of long-term care is informal care, but it is unclear whether these estimates refer to numbers of persons, proportion of services, or some other measurable factor. If it is true that only 1.2 million Americans now receive informal care, then the magnitude of the problem may be less than previously statedand the cost implications proportionately less worrisome to Federal, State, and local governments. Costs of informal care include the wages and salaries forgone by family members caring for patients, the lost productivity that results when experienced workers leave the work force to care for relatives, and the stresses borne by patients and their families (37,125; see also chs. 2 and 4). The stress induced by loss of mental functions and personality change is enormous for individuals with dementia and for their families, and can lead to illness among caregivers. Such stress can be exacerbated by difficulties in finding and coordinating services to relieve the caregiving burden. The bulk of informal care is delivered first by spouses, then by children (especially daughters) (38,1OO). The burden falls disproportionately on women, The very late onset of most dementing illnesses often means that a woman in her fifties or even late sixties may be the primary caregiver (14). The efforts of spouses and children are not generally captured by economic surveysthe costs of caring are hidden because no one pays for them directly. A few indirect indicators of cost have been identified. Of those responding to the national survey conducted for OTA-which, because the sample was drawn from the national mailing list of ADRDA, likely represents more well-to-do families than average percent reported they had cut back sharply in spending in order to care for their affected relative, 10 percent reported some impact, 22 percent noted little or no impact, and 48 percent had not used their own funds at all (123). (These figures add up to over 100 per-

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Ch. IDementia: Prospects and Policies l 2 1 cent because of multiple answers from some respondents.) A survey of women in Philadelphia found that 28 percent of those taking care of dependent mothers had quit their jobs to give care at home, and a similar proportion were considering it or had reduced their hours of work (12). A study of a national sample of long-term care recipients found 9 percent of caregivers had quit their jobs (100). Researchers studying the social breakdown syndrome (a combined index of functional limitations and difficult behavior) concluded that most of the functional limitation and troublesome behavior occurring in the community is unrelated to the presence of a mental disorder in the elderly person. Nonetheless, persons with dementing disorders contribute to the community burden of disability disproportionately (88). These studies are further indications of the cost of informal longterm care for patients with dementia. Finally, two recent studies have been combined to estimate the community costs of caring for those with dementia. A small pilot study of 19 community-dwelling older Americans estimated average costs at $11,700 (in 1983 dollars) to take care of someone with dementia at home, based on what the care would have cost if families hired outside caregivers at prevailing wage rates. This study yielded national estimates of $26.7 billion for such care (50,51). Costs to Government Costs borne by government are of special interest to policy makers. The amount is not known and has not been specifically analyzed in any major national survey. Several factors suggest the services needed by individuals with dementia may be more costly than for other long-term care populations. The duration of nursing home stay for those with chronic brain syndrome and senility in the 1977 National Nursing Home Survey was 5 percent longer than average (111, combining tables H and 8). That figure significantly understates the likely length of nursing home stay for residents who enter because of dementia, for it is averaged over a diverse group of residents who stay for shorter periods. Those with chronic brain syndrome who are still in a nursing home at 90 days are expected to remain approximately 3 years (1,104 days), much longer than for any other diagnostic group. The average expected stay at time of admission is 97 percent greater (72). (These data are not specific to dementia patients, however, because while those in the category of chronic brain syndrome are largely residents with dementia, other groupsincluding a fraction of adults with mental retardation-are also included.) Residents staying longer in a nursing home are more likely to spend down to Medicaid eligibility as they run out of financial resources by paying for care, although that has not been confirmed specifically for those with dementia. The RUG-II long-term care demonstration project in New York State found that patients with diagnoses indicating dementia had levels of disability 6 percent higher than average (32). That higher level of disability would lead to a higher level of careand thus costin turn causing increased State and Federal payments to nursing homes for such residents under the RUG-II payment system (98). Indirect analysis thus suggests that length of stay and level of disability are both higher for residents with diagnoses indicating dementia, and that individuals with dementia are more likely to be publicly subsidized by the Medicaid program and their care is more expensive than average nursing home residents. A range of long-term care costs can be estimated. The maximum possible cost would assume nursing home care for all with severe dementia, with estimates in the range of $33 billion (1.5 million residents times $22,000 per year average cost of nursing homes). The $22,000 is calculated by dividing total estimated costs for nursing homes in 1986 ($32.8 billion) (54) by the estimated number of nursing home residents (1.493 million) (106). That calculation accords well with one estimate based on a direct survey of 25 nursing home residents with dementia, which found costs of $22,500 per resident per year (in 1983 dollars) (49). If the Federal Government paid 30 percent of this, then its costs would be roughly $10 billion. The $10 billion figure has a misleading ceiling, however. A more realistic figure for government costs is based on the assumption that half of current nursing home residents have dementia and

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22 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias that Medicare nursing home payments are not for dementia. That hypothesis yields an estimate of $4.4 billion for the Federal Government and $4.1 billion for the States in 1986. That estimate implies that the Federal and State Governments are each bearing roughly 10 to 15 percent of the overall costs of long-term care for those with dementia, with the remainder coming from individuals. (Some individual payments, however, also come indirectly from government through social security, VA pensions, and Supplemental Security Income, which provide over 45 percent of income for those over 65.) These estimates are necessarily quite imprecise, and more refined service planning will require much better information and analysis. The amount of long-term care covered by government programs depends on several factors: degree of subsidy of services, access to services, eligibility criteria for programs, range of services provided, and method of payment. Expanding eligibility, access, range of services, or degree of subsidy would increase government costs, while narrower eligibility or restricted access to facilities would either reduce overall costs or shift expenses to individuals and families. COORDINATING SERVICES FOR THOSE WITH DEMENTIA Although several chronic disorders of old age increasingly confront the American health care system and cause people to need long-term care, several features of dementia make it especially difficult to coordinate services for anyone with this condition. Medical, mental health, and social services are frequently adapted only poorly to the needs and abilities of those with dementia. Services are typically intended for targeted populations, and those with dementia can fall through the cracks. Families are often referred from agency to agency, each of which may exclude individuals with dementia from their services for differentand legitimatereasons (83). That need not be the case. In some regions, referral networks and family support groups have been established to deal with this problem (30, 35,83). Services adapted to patients with dementia are increasingly common, but still serve only a small fraction of the total population. For now, many individuals are left in an administrative limbo between services intended for aged, mentally ill, and acutely ill Americans (13). Some States, local governments, or organizations have developed innovative and effective methods for delivering and coordinating care. The ADRDA chapters in Portland, OR and Atlanta, GA, for example, have developed in-home respite programs (30,35). The Family Survival Project and On-Lok have both coordinated and managed financing of a wide range of services in the San Francisco Bay area (73,83). These programs demonstrate that services for patients with dementia can be provided and financed successfully. Several States have commissioned studies, developed plans, or established special programs that cover individuals with dementia. Georgia, Illinois, Kansas, Maryland, Massachusetts, Rhode Island, and Texas have issued major reports (2,19,38,41, 42,61,92,101). Minnesota has produced a comprehensive plan to serve those with brain impairments (77). California has passed several bills to fund pilot projects and is preparing a Task Force report (90). These States have taken the lead in studying the needs and planning services for those with dementia. The Care System The system for taking care of individuals with dementia includes a wide range of services provided in many settings. The informal care system consists of family, friends, and communities. The formal system consists of government agencies and nongovernmental organizations whose primary purpose is to provide services. Most of the needs of those with dementia are met by the informal care network. Formal service providers are usually used when the informal care system breaks down (e.g., a caregiver moves, gets sick, or dies) or when informal supports are not available (e.g., those without families and living alone),

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Ch. lDementia: Prospects and Policies 23 Surveying the history of formal services, two researchers observed that: public policy, in the last 50 years, has responded to the demographic imperatives of an aging society unevenly. In the two areas of income maintenance and medical services there has been substantial, and for the most part effective, response. But public policy has faltered in the area of health/ social services (14). People 65 or older have become much more economically independent, largely as a result of greater general affluence and Federal income support programsprimarily Social Security, government pension plans, and Supplemental Security Income (14,40). Medicare, the main Federal health program for those over 64 or with a disability, has broadened access to acute medical and shortterm transitional care. Medicaid, the health program jointly funded by States and the Federal Government, has increased access to acute medical care for the indigent and become a major funding source for long-term care of the elderly. Longterm care for those who are not indigent and social services in general have not been as heavily subsidized by the Federal Government. The protracted course of most dementing illnesses often leads to years during which an affected individual needs constant supervision. Most of the caregivers activity is directed not at relieving medical problems, but rather at preventing the patient from inflicting harm and at enhancing the quality of the individuals life by taking advantage of preserved mental and physical functions. Those with dementia, for example, often can sing after they lose the ability to speak in long sentences, and they typically retain emotional responsiveness long after their intellectual functions are severely impaired. Long-term supervisory care of the sort needed for someone with dementia is a service not generally covered by government-supported programs (except for the indigent). In addition, government programs usually focus on the person needing care; yet the person and caregiver function as a unit in most cases of dementia. Hiring a trained supervisor occasionally to watch and take care of someone with dementia gives caregivers respitetime needed to perform routine errands, socialize, or reinstate a sense of their own lives. Such services are not widely available, and formal programs generally do not cover them. The system of care for those with dementia has several components. Patients must be medically evaluated, their medical illnesses treated, the severity of their illness assessed, their care needs identified, various services coordinated, and use of services financed. Each of these functions must be performed for each person. The ideal situation is a continuum of care in which the individuals informal supports and formal resources are assessed, and services identified and provided according to varying needs at different times. The system rarely functions smoothly, however, and the long-term care part of the system is particularly noted for its gaps in services and the paucity of financing alternatives. Inventory of Services In the survey undertaken for OTA, those caring for individuals with dementia were asked about their assessment of the importance of various services (regardless of current cost and availability constraints) (see ch. 4). The following 10 services were listed as most important, starting with those most often rated essential or most important: 1. a paid companion who can come to the home a few hours each week to give caregivers a rest; 2. assistance in ]ocating people or organizations that provide patient care; 3. assistance in applying for government programs, such as Medicaid, disability insurance, 4. 5. 6. 7. 8. and income support programs; a paid companion who can come to the home for overnight care so caregivers can go away for one or more days; home care to provide personal care for the individual with dementia, such as bathing, dressing, or feeding in the home; support groups composed of others who are caring for individuals with dementia; special nursing home care programs only for individuals with dementia; short-term respite care in nursing homes or

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24 Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias 9. 10. hospitals to take care of individuals with dementia while the caregiver is away; adult day care providing supervision and activities away from the home; and visting nurse services for care at home (123). In-home care, information about availability of services and government programs, and various forms of respite care were all highly ranked in the survey. These services do not exactly match those now available. Many of the services could be provided in a variety of settings, or by more than one type of professional. Services are generally provided by agencies that focus on particular target groups in the population. The Federal Government funds services through several programs, including: l l l l l l Medicare, providing acute medical services for those at least 65, disabled, or suffering from end-stage renal disease; Medicaid, a joint State and Federal program to provide acute and long-term care for those with low income; Social Services Block Grants, under title XX of the Social Security Actthe services are not specified by the Federal Government, and States may provide foster care, adult day care, home care, homemaker services, meal preparation and delivery, transportation, or other services; Supplemental Security Income, a Federal program that makes monthly payments to the aged, disabled, and blind with incomes and assets below a Federal standardindividual States may supplement the Federal benefit to cover specific groups, such as those in board and care facilities, and can also cover services such as home care and homemaker services; Services for the Aged, under title III of the Older Americans Actthe range of services and eligibility are determined by States and Area Agencies on Aging (which are affiliated with the Administration on Aging); services may include adult day care, home care, homemaker services, transportation, telephone reassurance, senior center activities, and others; Mental Health Services, under Mental Health Block Grants to the Statesthe services include family counseling, drug use counseling, and support groups, and may include diagnosis and treatment in some areas; and l Income Programs, under Social Security and government pensions programsSocial Security accounts for 37.6 percent and government pensions for 8.5 percent of the income to couples over 64; for individuals, the figures are 44.5 percent from Social Security and 7.8 percent from government pensions (40). Government programs thus can overlap extensively in providing services for persons with dementia, can leave gaps in available services, and can vary in coverage from region to region and from one person to another. In addition to variable coverage, there is also variability of how services are organized. Services are usually organized according to the agency providing them. One study observed: Health services for the aged are multiple, parallel, overlapping, and noncontinuous and at the very least confusing to the elderly consumer. Rarely do they meet the collective criteria of availability, accessibility, affordability, or offer continuity of care in a holistically organized system. Planning for health services for the aged is similarly confused. Parallel systems of service have their own planning mechanisms. As a result, the various planning efforts overlap, contradict, and are unrelated one to the other. Virtually all the services are funded by differing public money streams and have varied administrative arrangements, widely ranging eligibility requirements, and different benefits for the same or similar services (15). Government and nongovernment programs are similar in grouping services into acute medical services, long-term care services, mental health services, senior services, and social services. The specific services included under these groupings often cover similar services and leave gaps among others. Personal care service may be included as a social benefit, a long-term care benefit, or in some cases a medical benefit. In most areas, however, it would not be available under any agency programs. Some of the services are noted in table 1-5. The settings in which the services are provided can be either residential (where the client lives) or nonresidential (a place the client goes to obtain services ). The settings most often used are

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Ch. lDementia: Prospects and Policies l 2 5 Table 1-5.Care Services for Individuals With Dementia Adult day care Patient assessment Case management Personal care Chore services Personal emergency Congregate meals response systems Dental services Physical therapy Home delivered meals Physician services Home health aide services Protective services Homemaker services Recreational services Hospice services Respite care Information and referral to Skilled nursing services Speech therapy Legal services Supervisio n Mental health services Telephone reassurance Occupational therapy Transportatio n Paid companion/sitte r SOURCE: Office of Technology Assessment, 1986, listed and briefly defined in table 1-6. Chapter 6 contains a more detailed discussion of the settings, and the way that services and settings are provided and allocated. Senior Services Although dementing conditions are increasingly prevalent with age, only a minority of those in any age group ever develops dementia. Services for older Americans are usually targeted at the needs of the greatest number, and include senior centers, transportation, counseling, and homemaker chores. These are important services, but many programs exclude mentally impaired individuals, and many services useful to most older Americans are not helpful to those with dementia. Departments of aging and Federal agencies have increasingly focused on frail elderly individuals in recent years, but this grouping includes a heterogeneous population with a large variety of medical conditions. Dementing conditions are among the most prevalent and severe age-associated diseases. But recognition of this fact is relatively recent, and services have not fully adapted to the needs of those with dementia. Under the Administration on Aging, several Area Agencies on Aging and LongTerm Care Gerontology Centers have established programs on Alzheimers disease (108,110), but these serve only a small fraction of those with deTable 1-6.Care Settings for Individuals With Dementia Residential settings: In-home services may include home health care, personal care, chore services, and homemaker services to the clients house, apartment, or other residence. Some in-home health services are provided by home health care agencies, most of which are certified by Medicare and must meet Federal standards for staffing and range of services Other services are provided by community agencies funded by Federal, State, and local governments or nongovernmental organizations, Such agencies are generally not licensed or regulated. Nursing homes are health care facilities that provide 24-hour care, nursing, and personal services in an institutional setting. Most are certified to provide care under Medicare and Medicaid to eligible residents, and are regulated by States, subject to Federal and State standards. Board and care facilities are nonmedical residential care facilities that provide room and board and variable degrees of protective supervision and personal care, These range in size from foster care units with a few residents to large domiciliary facilities that house several hundred people. Many board and care facilities are licensed by State governments, but regulations are generally limited to physical structure and fire safety rather than patient care. State mental hospitals are generally large State-funded institutions that provide acute and long-term psychiatric care primarily for mentally ill people, but also for some patients with dementiaespecially those with behavioral symptoms that are difficult to manage. Hospitals are facilities for medical care of those temporarily residing in them. The primary services available are diagnosis and treatment, but hospitals also often serve as foci for rehabilitation, case management, counseling, family support. They may also be affiliated with nursing homes, day care centers, home health agencies, or other settings and services. Hospices are facilities for the care of terminally ill people. The emphasis in hospices is on alleviating symptoms and providing personal support, rather than cure and rehabilitation, Hospice services can be delivered in other settings, if the intent is to diminish suffering rather than prolong life. Nonresidential settings: Adult day care centers are day treatment facilities, some of which provide intensive medical, physical, or occupational therapy. Others provide primarily social activities and personal services for several hours during the day. Adult day care centers are licensed by some States, and must meet fire and safety codes of local jurisdictions, but are not subject to Federal regulation unless they provide services reimbursed by Medicare or Medicaid. Community mental health centers are psychiatric and psychological treatment facilities that provide a variety of mental health services for people with acute and chronic mental illnesses. Most services are provided on an outpatient basis. Most centers were originally developed in accordance with Federal regulations tied to Federal funding but are now regulated by States and funded by them, supplemented by Federal funding through Mental Health Block Grants, outpatient facilities and clinics are medical settings for diagnosis and treatment of diseases, They may also become involved in delivering other services such as case management and counseling, Senior centers are facilities intended for use by older Americans, They are often funded by a combination of private charity and local, State, and Federal Government contributions, Day care, recreational activities, family support, case management, and mental health services are available at some but not all senior centers. SOURCE Off Ice of Technology Assessment, 1986

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26 Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias mentia. In most areas, services for the elderly population do not include those specifically intended for individuals with dementia, and are poorly adapted to their needs (59). Although many commentators question whether services should be made available to those with dementia that are not available to similarly disabled groups (108), the degree of mismatch between services and the needs of persons with dementia could clearly be reduced without creating special eligibility groups. Acute Care Services Acute medical care for dementia includes identifying symptoms, diagnosing their cause, and treating illnesses discovered in the diagnostic process. Diagnosis and medical treatment for dementia are generally covered by insurance and government programs to the same extent as other medical conditions. Patients are not excluded from eligibility for acute medical care because of the nature of their symptoms. One inequity, a limitation of outpatient psychiatric care, has been addressed in recommendations of the DHHS Task Force on Alzheimers Disease (110), but that represents a relatively small component of the acute care needs of those with dementia. Methods of prevention also need attention in the acute care system. While there is no known way to avoid the most common dementiaAlzheimers disease-diet, personal habits, and medical care can prevent many of the other disorders (e.g., diet can influence the risk of vascular disease and thus vascular dementia, and cessation of smoking can reduce the likelihood of lung cancer with spread to the brain-one of the most common types of brain tumors in those over 64). Even if the disorders causing dementia cannot be prevented, however, excess disability related to them can be reducedpreventing unnecessary suffering and costs of medical attentionavoiding infections (through vaccination and prompt treatment), careful use of medications (to avoid side effects), and altering personal habits (e.g., stop smoking to enhance lung function and reduce fire hazard, or reduce drinking that intensifies disorientation). Diagnosis and treatment presuppose trained doctors, nurses, and other health professionals. Alzheimers disease and dementia were once the province of specialists such as neurologists and psychiatrists, but the aging of the population and increased awareness of dementia are making these conditions also a problem for family practitioners, internists, and other primary care physicians. In addition, there is a movement in medicine to provide specialized training for those dealing with the medical problems of older people, That type of practice, called geriatrics, is not now a medical specialty, but existing medical boards are offering special recognition of geriatric training (see ch. 9). Medical aspects of dementia are important in such training because dementia is primarily, although not exclusively, a geriatric problem. The main issues in acute medical care are: 1) accurate diagnosis; 2) adequate treatment of general medical problems and controllable symptoms; and 3) training physicians, nurses, nurses aides, and other caregivers. The main mechanisms for improving care are to educate health professionals and to ensure that full diagnostic evaluation and treatments are fairly reimbursed. Long-Term Care Services Although no single definition of long-term care has been accepted, it is generally agreed that its goal is to maintain or improve an individuals ability to function as independently as possible, and that services will be needed over a prolonged period, even if only needed intermittently. Medical care is an essential component, but a variety of other services are also important (60), Longterm care in public policy contexts sometimes means primarily nursing home care, although recent definitions are careful not to so restrict themselves. The White House Conference on Aging, for example, noted: Long-term care represents a range of services that address the health, social, and personal care needs of individuals who, for one reason or another, have never developed or have lost the ability for self-care. Services may be continuous or intermittent, but it is generally presumed that they will be delivered in the long-term) that is, indefinitely, to individuals who have demonstrated need usually measured by some index of functional incapacity (113).

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Ch. lDementia: Prospects and Policies l 2 7 In terms of spending, however, Federal longterm care policy is mainly concerned with nursing home care. Even within the nursing home population, there is an important division of types and duration of long-term care. Nursing home care covered by Medicare, for example, is intended for those who primarily need medical treatments and intensive nursing care, called skilled care (e.g., changing of catheters, postsurgical care, and physical therapy) for short periods (generally less than 2 months). Medicaid coverage includes skilled care and also less specifically medical components, called intermediate care, but the emphasis remains on medical, as opposed to supervisory, care. Medical care in nursing homes tends to be needed most by those who are there for fewer than 90 days. Those residing in nursing homes for longer periods differ from others in type of disease (72) and in the services needed (14,52). One study found that those with severe dementia admitted to a VA hospital were much more likely than other patients to come from a nursing home and to still reside in a nursing home one year later (96). Another study found that impairments that include dementia have the longest expected duration of residency in nursing homes among groups studied (72). Some have called attention to the two different populations in nursing homes, calling them short-term long-term care versus long-term long-term care (16), or skilled versus chronic care (52). Individuals with dementia are likely to be in the long-stay group, needing supervisory and personal care more than medical attention. One analysis estimates that those with dementia constitute 60 to 70 percent of the long-stay group (14), making dementia one of the major determinants of those staying longer than 90 days in nursing homes. The distinction between shortand long-stay patients is particularly relevant in considering the potentially catastrophic costs of nursing home care. Catastrophic costs would accrue primarily to the longstay residents of nursing homes. Five percent of Americans 65 and over are in nursing homes at any one time, but only 3.5 percent are long-stay patients (16). That implies the risk of incurring catastrophic long-term care costs is restricted to a smaller fraction of the population than is often cited, and makes risk-sharing through insurance more practical. Nursing home care is by far the largest cost component of long-term care. Costs vary from region to region, ranging from just over $750 per month to over $3,000, A recent study estimates that out-of-pocket costs for hospital care will account for $3.3 billion of the $63 billion total (5.2 percent) spent on inpatient services, and $600 million of the $5.8 billion (10,3 percent) on outpatient services in 1986 (see figure 1-5), That estimate contrasts with $16 billion in out-of-pocket payments of the estimated $32.8 billion (49 percent) spent on nursing home care (54). (The projection of 1986 costs differs from the $38.9 billion used by the Health Care Financing Administration cited earlier (8)as it is based on a different economic model.) Direct comparisons between hospitals and nursing homes are somewhat misleading, however. Nursing home and hospital costs include several components such as room and board, laundry, meal preparation, and cleaning. Residents of nursing homes and hospitals would pay for such (basic living costs even if they were healthy and not in either facility. Other services are needed because of disability, such as nursing care and access to diagnostic treatment facilities, and these costs can be attributed to illness. Yet nursing home and hospital charges do not separate basic from medical service components. Comparisons of nursing home and hospital costs should compare the costs due to illness, not overall costs. The proportion of basic living costs is higher for nursing homes than hospitals, accounting for some of the discrepancy in what is covered by insurance and health care programs. It is unlikely, however, that basic living costs account for all or even most of the differential coverage. There is even evidence to suggest that hospitals are more expensive than nursing homes in delivering the same services (102), and costs in hospitals would more likely be covered by insurance or government health programs. The availability of nursing home beds varies dramatically. In Wisconsin there is a surfeit of beds, particularly in the summer. In other States, health These figures are taken from fiscal year 1982 costs for intwmediate care facility reimbursement in Kansas undm Medicaid ($25.1 1 per day) as the minimum, and for a proprietarjr nonprofit facility in Newr }ork (o\rer $100 per day) as the maximum. he Kansas figure is taken from Health Care Financing Administration data organized b} the American Health Care Asso(.iiition (57). 63-218 0 87 2 QL : 3

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28 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias Figure l-5.Out-of-Pocket Expenditures by Type of Service and Care, Estimated for 1986 By type of service 70 60 50 40 30 20 10 o Inpatient Total Out-of-pocket Outpatient Type of service By type of care 10 t I Nursing home Nursing home services SOURCE: ICF, Inc., The Role of Medicare in Financing the Health Care of Older Americans. submitted to American Association of Retired Persons, July 19S5, table 21, adapted by the Office of Technology Assessment. systems agencies or other health planning boards have deliberately restricted the number of nursing home beds available in order to reduce costs under Medicaid. They have done so by using a process called certificate-of-need legislation, requiring a facility to receive State approval before adding beds. The constraint in number of beds has increased pressures for new beds by creating an unmet demand in many States. The dearth of insurance and Medicare coverage of long-term care (particularly for stays of more than 90 days) is not widely recognized by most older Americans. A survey of elderly people performed by Gallup for the American Association of Retired Persons showed that 79 percent believed that Medicare would pay for all or part of their nursing home care (6). Another survey found that only 25 to 47 percent of those asked knew that Medicare does not cover a 6-month nursing home stay (76). Yet Medicare covers less than 2 percent of expenditures for nursing homes, and private insurance pays for less than 1 percent (54). Medicaid is a program intended only for the indigent, and eligibility is contingent on nearly complete depletion of financial resources. Two recent surveys of older people in Massachusetts showed the high risk of families spending down to become financially eligible for Medicaid coverage soon after admission to a nursing home. Among those 75 and over, from 57 to 72 percent would become Medicaid-eligible by the end of one year in a nursing home; the figures for those over 65 were 57 to 83 percent (depending on marital status) (104). Figures for other areas will differ significantly because Medicaid varies in coverage and eligibility from State to State (see ch. 11) (19,67). Social Services Social services include housekeeping, transportation, and assistance in daily living (e.g., dressing, eating, shopping, meal preparation). Social services emphasize providing clients with what they need but cannot do for themselves, regardless of why they cannot do them. These services can be provided at the clients home or in community facilities, and not only at specialized medical or mental health centers. Many services, such

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Ch. lDementia: Prospects and Policies l 2 9 as assistance with dressing or meal preparation, are needed by most individuals with dementia. The home services needed by individuals with dementia are a particularly troublesome public policy issue. Medicare home health benefits are intended for use by those who would otherwise be accepting medical care in a hospital or nursing home. Although meal preparation, supervision, and personal care are the services most frequently needed by individuals with dementia at home, they are not covered by Medicare (or by Medicaid in most areas). Some social service agencies include those with dementia among their eligible population groups. The need for those delivering services to be trained to deal with the behavioral problems and mental confusion associated with dementia, however, may prevent some agencies from including persons with dementia in their client groups. In some regions, social services are coordinated with long-term care, health care, mental health care, or senior services (e.g., providing transportation to day care centers or delivering meals on wheels). In most areas, however, social services are only poorly coordinated with other services (19,58). Yet these services are among the ones most desired by caregivers and are significantly less expensive than home health care. Medical and other health and social service administrators are reluctant to increase the range and availability of home services in some areas, however, because of anticipated escalating costs. They fear that such services would be abused by a variety of people who are not ill or needy. The potential for abuse would be reduced if recipients of the service were required to have an assessment of needs (based on diagnosis, functional disability, or some combination of factors), but it is not clear that there is a practical assessment method available that is cheap, accurate, reliable, and auditable. Inexpensive home care for persons with dementia has been successful in some areas, often sponsored or coordinated by local ADRDA chapters or Area Agencies on Aging (30,35,89). A pilot project to train volunteer caregivers about dementia so they can provide social services in the home is beginning under the Senior Companion Program of ACTION. Such programs rely on funding through charity, volunteers, and nongovernment organizations, and the clients family is usually the source of payment. That is an economic way to control use. Another method is to set an upper limit on subsidized benefits by limiting the total days or budget, or through a voucher system (83). Mental Health Services Until the 1960s, institutional care for individuals with dementia was largely provided in State mental hospitals. Public policies to reduce the population in such facilities decreased the number of persons with dementia in mental institutions, and the availability of joint Federal and State coverage of nursing home care accelerated this trend (58,64). One careful investigation suggests that older persons who once would have been sent to mental hospitals are now referred to nursing homes (47 of 50 residents in one nursing home 94 percenthad a mental disorder) (95). The displacement has not been due to transferring residents directly from mental hospitals to nursing homes, however. (In the study just cited, only 1 resident out of 50 had been so transferred.) The data are most simply explained by older persons with behavioral and cognitive symptoms being preferentially admitted to nursing homes instead of mental institutions in recent years. The behavioral aspects of dementia are among the most difficult symptoms to manage, and facilities using a mental health model (focusing on adapting to the individuals behavior) rather than a medical one (focusing on correcting a disability) appear in preliminary studies to benefit people more (25). A pattern of care is emerging that emphasizes careful medical evaluation and drug management, combined with a mental health model of care in nursing homes and day care centers that coordinate their services with available social and aging services. Persons with dementia become dependent because of their inability to understand the intricacies of daily life. Although symptoms are caused by physical brain damage, dependency is induced by loss of mental function, rather than physical disability. That contrasts with arthritis or hip fractures, for example, where immobility is directly caused by joint and bone problems, and the dis-

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30 Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias ability is easier to observe and measure. There is less opportunity for confusing physical disabilities than mental ones, and concern for overutili zation of health care services overall has engendered a conservative approach that puts the burden of proof on individuals with mental symptoms to show the legitimacy of their needs. The behavioral symptoms of dementia often relegate individuals to categories for which coverage by health programs is ambiguous. They may be eligible for medical care, mental health services, both, or neither. In times of budget restraint, programs typically cut back on services not central to their mandate. Dementia is at the margin of both medical care and mental health services. Patients may be seen by a family physician, an internist, a neurologist, or a psychiatrist, and each specialty has its own orientation for diagnosis and treatment. Agencies delivering mental health services may exclude someone with dementia because their resources only cover drug rehabilitation, for example, or rape counseling, and yet health care programs typically focus on acute rather than long-term care. Those with dementia may thus be left with access to no services except family care at home or nursing home placement. The Federal Government supports mental health research at the National Institute of Mental Health (NIMH) and pays for some mental health services through payments to States. Federal and State Governments jointly fund Community Mental Health Centers (CMHCs) throughout the Nation, but these must deliver a full range of services to all population groups. A recent survey found that at most 20 percent of CMHCs had programs for persons with dementia and their families; these programs were five times as common in CMHCs specialized in mental health for older individuals, and they were heavily used where available (68,69). NIMH has established three Clinical Research Centers on Psychopathology of the Elderly, two of which focus on Alzheimers disease (108). These are important centers for investigating individual needs, treatment methods, and family support mechanisms. They also train many clinicians who can then care for patients in their practice. Yet because of the extent of the problem, the NIMH national centers and those CMHCs covering dementia miss large sections of the population. Findings from these centers must be applied nationwide before most Americans can benefit from them. Mental health services for caregivers are also important. That applies to family caregivers as well as professionals and aides working in home care services, day care centers, and nursing homes. Services for caregivers include support groups, counseling, and treatment of stress-induced disorders. Much of the support for families has been provided by volunteer groups such as ADRDA and dozens of smaller local organizations at little cost to taxpayers. Such support cannot cover the full range of needs, however, and large geographic areas are still not served by such groups. Expanding the range of services and geographic coverage are both high priorities for ADRDA in its current organizational plan (4). Services for caregivers in long-term care facilities are not as well organized, and that issue deserves increased attention from home care, day care, board and care, and nursing home providers. GROUPS OF SPECIAL CONCERN Several groups are of special concern in policy l low-income groups, and discussions of care and services for persons with l caregivers. dementia: Each group has special needs and problems not l l l l l those without families, shared by everyone with dementia that influence minority and ethnic groups, how providers must adapt services. The first four individuals experiencing disease onset in midgroups are at special risk of reduced access to servdle age, ices. They represent especially vulnerable popu individuals residing in rural areas, lations, and those most likely to benefit from public veterans, services. The different risk factors can reinforce

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Ch. IDementia: Prospects and Policies l 3 1 one another to identify those in particular jeopardy. A black woman with dementia living in a rural area on low income without a family, for example, would be unlikely to be receiving services but might especially need them. Those without Families Much public interest has centered on problems faced by the families of those with dementia. Yet while many policies designed to improve the situation of someone with dementia rely on relatives or friends who can make decisions about care, finances, or the persons rights, many individuals with dementia do not have families or friends available. A 1975 General Accounting Office study of those age 65 or older in Cleveland, found 13 percent did not have a primary source of help in the event of disability (107). A recent national sample of long-term care recipients found that 10.7 percent lived alone (100). The number without family may be higher for those with dementia because so many are quite old, and likely to be widowed. Extreme old age also increases the chance that someones children are disabled or deceased. People who are not married are more likely than married individuals to reside for long periods in nursing homes (72). They are less likely to have access to alternative services such as day care because of difficulty finding the service and arranging for transportation. Informal care directly provided by families and coordination of care often managed by family members are likewise unavailable. Patients without families are thus disproportionately dependent on formal long-term care services such as nursing home care and case management by public agencies. Special methods of identifying and assisting patients without families are available only in a few areas, however, and there is little information about them. Identifying those without families who may need services is especially difficult, but can be done by alerting police, ministers, grocers, and others in the community to look for older people who may be ill and to refer them to a lead agency. One program that does this is the gatekeeper program in Spokane, WA, which links a Community Mental Health Center, an Area Agency on Aging, and 13 other agencies together in a disseminated referral network with a single central process for screening candidates and determining eligibility for services (67,89). Minority Groups Minority groups have lower average incomes and use fewer public services than comparable groups in the general population. They frequently have different social support systems, religious affiliations, and cultural norms. Disparate minority groups cannot be analyzed as a homogeneous whole. Few studies have been done of older Americans in minority groups in general, and almost no information exists on dementia in particular (73). Although the prevalence of dementia appears similar across national boundaries and races, a few variations have been reported. The high rate of hypertension among blacks and Native Americans may make them more likely to develop vascular dementia (33,1 18). The ratio of vascular dementia to Alzheimers disease also appears higher in Japan, and surveys of Chinese and Taiwanese populations report dramatically reduced prevalence of dementia (although such differences may be due to reporting rather than true prevalence) (78). International studies of prevalence rates in different races can give clues about the expected prevalence among those minority groups in the United States, but rates in native countries can be affected by economic and cultural factors. Life expectancy among most minority groups is rising with more older individuals at risk of developing dementia. Minority groups also tend to be undercounted in the census, so projections of dementia among them would understate the true prevalence in the population. Each of these factors suggests that more minority elderly Americans will develop dementia, and that a higher proportion of persons with dementia will come from minority groups (73,1 18). Direct assessment of the prevalence and cause of dementia among minority groups in the United States is therefore important. Disability among members of minority groups is higher (88), but statistics show lower use of many public services (73). That pattern might be

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32 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias altered, however, by programs designed for specific minority populations. The Keiko nursing homes in Los Angeles focus on the needs of Americans of Japanese descent, while the successful OnLok program in San Francisco serves a population that is 70 percent of Chinese descent (73). Social, medical, and long-term care services are usually structured for the majority population and frequently are only poorly adapted to the cultural norms of minority groups. Most minority groups, particularly those with sufficient concentrations of people in an area, have informal networks of family, religious, community, and service supports. These supports generally are also linked at the local level with service providers, but Federal and State Government policies frequently fail to permit local agencies sufficient latitude to take advantage of minority group social supports (118). Service systems for minority groups work best when they take advantage of existing supports within the community. Black Americans tend to rely on churches for social and emotional support; Hispanics often have a network of consejeras (informal counselors) or servidores (people who informally take on the role of providing information and support); the Chinese have Yau Sum (person of good heart ); American Japanese may have Shinsetsu sua hito (kind person) networks; and Native Americans have tribal councils and designated spiritual leaders (73,118). The capacity of such informal supports, as in the majority culture, can be exceeded, Individuals with dementia typically go beyond the ability of the informal system to adapt at some point in the illness, but that point can be delayed by programs that foster informal networks, or that at least do not interfere with them (118). Although family support groups have grown rapidly throughout the United States, the early growth has been concentrated in the majority Caucasian population. In the survey conducted for OTA, drawn from the ADRDA national mailing list, 94.8 percent of respondents were white, 1.6 percent black, and 0.7 percent other (2.9 percent did not respond to this question) (123). That compares with 88.5 percent white, 8.8 percent black, and 2.7 percent other minority in the U.S. census of those aged 55 to 64 (73). Family support groups can, however, be successful among minority groups, as demonstrated by an Hispanic support group started in the Tampa area (47). Outreach to minority groups is high on the agenda of many of the support group organizations, including ADRDA. Individuals Experiencing Onset of Dementia in Middle Age The majority of dementing illnesses do not begin until after age 65. An estimated 5 to 10 percent of persons with dementia, however, develop the disease in middle age (27). The exact proportion of cases that begin before age 65 is uncertain, but an estimated 75,000 Americans under 65 have severe dementia (79). The problems caused by onset in middle age add to those associated with later onset. Individuals who are working almost invariably lose their jobs and are usually unable to find other employment. They and their families not only suffer loss of income, but also incur substantial medical expenses for diagnosis and treatment, often complicated by loss of health insurance caused by unemployment (although this effect should be mitigated by recent changes in Federal law that require extension of health insurance for most categories of employees). In addition, those in middle age are more likely to have young children with financial and emotional needs, who are less likely to understand declining mental function and personality change. Finally, many families discover that finances have been mismanaged for months or years before diagnosis. In many cases, the persons failed to maintain health, automobile, and life insurance payments, left important bills unpaid, or spent family funds frivolously. These problems can be compounded by the difficulty in dealing with public programs. A person under 65 may encounter difficulty establishing eligibility for Social Security Disability Insurance (SSDI) (19). The survey done for OTA of those caring for someone with dementia found that 11 percent had applied for SSDI and 35 percent had been denied benefits (123). That finding is particularly important for those under age 65 because denial

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Ch. lDementia: Prospects and Policies l 3 3 of disability benefits also generally precludes Medicare eligibility (19). Those declared ineligible for SSDI are also barred from Medicare coverage; those found eligible for SSDI must wait a minimum of 29 months until they are covered by Medicare (see ch. 11). The House and Senate Appropriations Committees requested that the Social Security Administration address disability policies regarding dementia, in consultation with the National Institutes of Health (conference report on Public Law 99-500). The number of those developing dementia before age 65 could dramatically increase as a consequence of acquired immune deficiency syndrome (AIDS). The majority of those who develop AIDS also develop dementia due to brain infection by the virus that causes the disease (85). They thus become dependent on others for medical and daily care. Nine thousand cases of AIDS were reported in the United States in 1985, and 46,000 to 90,000 are expected in 1991; 20 to 30 percent of the estimated 1 to 1.5 million Americans infected by the AIDS virus as of June 1986 are projected to develop AIDS by 1991 (24). If 70 percent of those with AIDS develop dementia, then the proportion of those with dementia under 65 would almost double. There are several uncertainties in that estimate. The mortality of AIDS is quite high and so the duration of illness would be short. The proportion of those with virus infection who develop dementia but not AIDS is unknown, and the duration might be longer for such individuals. The AIDS pandemic is thus likely to dramatically increase care needs for those under age 65 with dementia, but the amount and duration of needed care are highly uncertainboth overall and for each patient. Rural Residents Rural residents have access to fewer specialized services, and hence a restricted range of long-term care options. Rural areas may be served by a single general physician unfamiliar with dementia, have only one local hospital, and only one nursing home. Few have adult day care or in-home services, and participation in family support groups, the few places they exist, may require substantial travel time, Reduced access to services may be exacerbated if there are no family members in the area to help care for the individual with dementia, or if there are no neighbors nearby to provide intermittent help. Veterans The Veterans Administration is concerned about the rising prevalence of dementia among those eligible for its services (28, 116, 117). The rise in prevalence among veterans will peak 10 to 20 years before it does in the general population because of the special demographics of those who served during World War H, the Korean war, and in Vietnam (see figure 1-6). The care received by veterans depends on why and when their illnesses began. The first priority for VA services goes to those whose disability or illness is service-connected. Dementia is only rarely service-connected (e.g., because of severe head trauma). Other services are provided on a space-available basis. Some VA facilities have developed special programs for those with dementia, but VA hospitals do not guarantee access to long-term care or to specialized services for those with dementia (see figure 1-7). Most VA facilities cover care for diagnosis and treatment of intercurrent illnesses. Veterans Administration hospitals and nursing homes treated over 20,000 veterans with a diagnosis of dementia in fiscal year 1983. Special care units for individuals with dementia have been developed at 12 VA medical centers. Yet the survey of caregivers done for OTA Figure 1.6.Number of Veterans Age 65 and Over SOURCE: Veterans Administration, International Working Group, The Veterans Administration and Demenfla, Recommendations for Patient Care, Research $ and Training, October 1985.

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34 Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias Figure l-7. Prevalence and Annual New Cases of Dementia, U.S. Veterans, 1980=2000 400 I 1 I 150 J 0 i i 1 1 J 1990 2000 Year SOURCE Veterans Administration, International Working Group, The Veterans Administration arrd Dementia, Recornrnerrdatiorrs for Patient Care, Research, and Training $ October 1985, found that 45 percent of those who had applied for extended care were refused VA services, most often because the disability was not service-connected (123). For several reasons, the VA system is under increasing political pressure to provide care to those with dementia and other chronic illnesses. First, the number of veterans reaching advanced age is expanding rapidly (see figure 1-6). In 1980, only 3 million veterans were 65 and older, but this will increase to 9 million by the year 2000 (representing 63 percent of all men 65 and older) (115), Second, veterans and their families often expect the VA to cover all care. Explanations that particular illnesses or disabilities will not be covered often are not understood or are rejected, particularly if families know that the type of care they seek is available at VA facilities in other geographical areas. Those With Low Incomes Americans with low incomes are particularly dependent on government programs. Lack of income restricts them to those services that are free through charity, subsidized, or inherently inexpensive. A substantial proportion of their low income is directly provided by the Federal Government. Among those 65 and over with less than $10)000 income, for example, social security provides on average 82.2 percent of income, compared with 17.8 percent for those with incomes over $30)100 (40), In addition, the Medicaid program to cover medical services is intended primarily for this group, yet both the lack of awareness and the complexity of the program hinder full use of the benefits. Ironically, those with higher incomes may benefit more from Medicaid, particularly the long-term care component, because they have easier access to the information needed to obtain eligibility and can afford to enter a nursing home as private pay clients, who later find they have spent down to Medicaid eligibility. People with lower incomes cannot pay initially, and nursing homes that have a choice prefer to admit private pay residents because Medicaid reimbursement rates are low. Caregivers Middle-aged caregivers are at high risk of becoming secondary victims of dementia. Volunteer groups and government services could productively target this group. The majority of those caring for dependent parents are middle-aged women (12,1OO), a fact that appears to be true not only for dependent older people in general, but also for those with dementia (37). These women may also be responsible for the care of children or adolescents, or may just be starting careers after their children have left home (12). Yet family support groups are the only services available to them in many areas. A recent study of a national sample of long-term care recipients found that roughly three-fourths of caregivers lived with the dependent older person 7 days a week, and only 9.7 percent purchased formal services (100). Of those caring for dependent older people, 44 percent had done so for more than 1 year but less than 4 years, and over 20 percent had been caregivers for 5 years or more. Caregivers who are themselves old face different stresses from those in middle age. Older caregivers are more likely to have an illness that in-

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Ch. 1Dementia: Prospects and Policies 35 creases the stress and health risk of caregiving. just the ill person. Decisions about an individuals The finances of a person with dementia and the legal status (and control of family finances) likecaregiver are closely commingled when the carewise affect the person with dementia and the giver is a spouse, so the costs of care can have spouse alike. a catastrophic impact on two or more people, not

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36 l Losing a Million Minds: Confronting the Tragedy of A/zheimers Disease and Other Dementias POLICY The problems faced by persons with dementia and their families impinge on public policy in many ways, There is no cure, no means of prevention, and no fully effective treatment for most demen tias. The government strategies for addressing this public health problem are: 1) to support research in hopes of discovering a cure or means of prevention, and 2) to deliver or facilitate delivery of services for those who develop dementia. The roles played by the Federal Government that are relevant to the problems of dementia include: l l l l l l l supporting research, including basic science, clinical research, and the study of health care delivery; directly providing health care to special populations; paying for care through Medicaid, Medicare, Mental Health Block Grants, and tax subsidies; training and educating health professionals and caregivers; assuring the quality of acute and long-term care; planning health and social services; and disseminating information on care, research, and services. Table 1-7 contains a brief list of some of the most important Federal programs that deliver or fund care for persons with dementia. Should There Be Special Programs for Dementia? Any discussion of the governments role in this field must consider whether there should be special programs for individuals with dementia. Furthermore, judgments about the fairness and effectiveness of different policies require a clear distinction between special services, entitlements, and research. Specialized Services Specialized services for those with dementia include support groups, day care centers, nursing home units, and in-home respite care programs designed specifically to aid those with mental impairment. Such specialized emphasis helps in the training of caregivers and focuses attention on ISSUES the special problems of delivering services to those with dementia. The existence of specialized services for one group of diseases need not discourage developing specialized services for others. Patients with cancer, for example, do not receive the same treatment as those with heart disease, and yet may be covered under the same medical program (e.g., Medicare). There is no consensus that persons with dementia should receive specialized services. Yet special care units at nursing homes, special day care centers, special board and care facilities, and even special hospitals for patients with Alzheimers disease are proliferating. The rationales for such units are the opportunity to improve the care of persons with dementia by having better trained staff and adaptive environments, reduced interference with residents without dementing disorders, and the need for activities that specifically take account of diminished intellectual and communicative skills. Many worry, however, that such facilities will become the repository for neglected individuals. At present, no separate guidelines are available for special care units and programs, and philosophies and methods for administering them differ markedly. The ferment of activity in special care is generally improving care for those with dementia, however, and is generating innovative care techniques. Special Entitlements Special entitlements for individuals with dementia would make eligibility for services contingent on a particular diagnosis or type of disability. A special Medicare or Medicaid entitlement for dementia could be created, analogous to the special Medicare eligibility reserved for those with endstage renal disease (although a special dementia entitlement would be primarily for long-term personal, rather than medical, care). Those favoring special entitlements contend that the problems of patients with dementia are so severe and different from those with other disorders that they deserve special eligibility. Others contend that those with dementia are merely one group among many vying for services in a fragmented health care market. They point to other groups with similar prob-

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Ch. lDementia: Prospects and Policies l 3 7 Table 1.7.Federal Roles in Dementia Issues Function Primary agency or method Agency delivering service Research: Biomedical research Public Health Service Veterans Administration (VA) Department of Education Research on health services National Center for Health Services Research and Health Care Technology Direct health care: Payment for care: Medicare (acute care) Medicaid (with States) Mental Health Block Grants (with States) Tax policies Contract care Training and education: Quality assurance: Acute care Nursing home care Mental health advocacy block grants to States Adult protective services planning: Assessment (NCHSR/HCTA) NIMH NIH Health Resources and Services Administration (HRSA) VA Health Care Financing Administration (HCFA) Administration on Aging (AOA) National Center for Health Statistics (NCHS) Bureau of the Census Department of Defense VA Indian Health Service HCFA HCFA Department of Treasury DHHS AOA HRSA Veterans Administration Public Health Service HCFA (Medicare) Student Loan Programs HCFA HCFA and States (Medicaid) Office of Assistant Secretary for Planning and Evaluation Off Ice of Assistant Secretary for Health (Alzhelmers Disease Task Force) Public Health Service HCFA (Medicare and Medicaid services) AOA VA (veterans) Department of Defense (military personnel) Indian Health Service (native Americans) National Institutes of Health (NIH) National Institute on Aging (NIA) National Institute of Neurological and Communicate Disorders and Stroke (NINCDS) Other NIH institutes National Institute of Mental Health (NIMH) (Alcohol, Drug Abuse, and Mental Health Administration) the majority of research under the Public Health Service is conducted at universities or medical centers VA investigators; geriatric research, education, and clinical care centers National Institute on Disability & Rehabilitation Research Long-term care gerontology centers Military hospitals and clinics VA hospitals and facilities, contractors Indian Health Service facilities Hospitals, clinics, institutions, other providers Providers through State administrate offices Community Mental Health Centers Internal Revenue Service Indian Health Service VA Long-term care gerontology centers Bureau of Health Professions Geriatric Research, Education, and Clinical Care Centers; Fellowships; Nurse Training, Interdisciplinary Teams NIH Fellowships and Centers; NIMH Fellowships and Centers Teaching hospitals Professional review organizations State certification and inspection offices AOA. others HRSA NIMH Area agencies on aging lnformation dissemination: Public Health Service NIH NIMH Office of Assistant Secretary for Health (Task Force on Alzheimers Disease) AOA Area agencies on aging HCFA (Medicare and Medicaid eliqibility and coverage) SOURCE Off Ice of Technology Assessment, 1986

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38 Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias lems in obtaining needed services, particularly long-term care. Other groups also have limited access to long-term care (e.g., adults with mental retardation or adults with spinal injury) and difficulty finding adequate mental health or social services (e.g., schizophrenics or the homeless). Still others may need health services from public programs with limited budgets (e.g., maternal and child health for the indigent under Medicaid). Some of the consequences of developing special entitlements for dementia can be predicted. A special long-term care program for those with Alzheimers disease would face several problems. If based on diagnosis, it would be unduly restrictive (eliminating services for those with multiinfarct or other dementias) or it would be vulnerable to inappropriate utilization because of vague definitions of the conditions covered. Making services contingent on diagnosis or a restricted list of conditions would put severe strain on the accuracy of diagnosis. While special diagnostic centers report 90 percent diagnostic accuracy (64), that proportion would likely drop if there were incentives favoring one diagnosis over another. Physicians wishing to aid their patients would likely list the diagnosis of Alzheimers disease in preference to other dementing conditions if there were any room for doubt, thereby increasing the number of persons reported to have Alzheimers disease even if the true prevalence did not change. If services were triggered by severity of disability, then a method to screen out those with lesser disability would have to be in place, That would likely entail mandatory assessment for eligibility, and would necessitate a measure of mental disability that is quick, accurate, reliable, and auditable. A special entitlement for dementia, or specifically for Alzheimers disease, also raises a question of fairness. An adult with spina bifida, Huntingtons disease, or multiple sclerosis needs many of the same services as an individual with dementia. A special entitlement restricted to persons with Alzheimers disease would likely promote conflict among interest groups for different diseases. A broader definition encompassing related disorders will be vague and difficult to implement. The prudent course appears to involve providing the services most needed but not restricting their use to only those with dementia. Specialized Research Although no consensus exists about the risks and benefits of special care or special entitlements, it is generally agreed that specialized research on relevant science, clinical care, and service use is essential. Serious study of the large group of people with severe functional disabilities due to dementia has only begun in the past few years, and much more information is necessary before public policies, medical practices, and service use can be rationally assessed. Such information can come only from research that focuses on individuals with dementia. Studies need not deal exclusively with persons with dementia to yield useful information. Those that survey long-term care or mental health in elderly people could shed light on the problems of someone with dementia if they include sufficient information to evaluate cognitive function (measured by a standard scale), service use, diagnosis, assessment of lost functions, efficacy of special care, and costs. Diagnosis and Treatment The main policy concern about diagnosis and treatment is rapid dissemination of knowledge to permit accurate diagnosis and appropriate treatment. The primary mechanisms for improving diagnosis and treatment are research and education (discussed in detail later in this section). Also of concern is how to link medical evaluation to long-term care service planning, patient assessment, and social services. Creating new entitlements restricted to those with dementia would, for example, provide strong incentives to widen diagnostic criteria for those conditions, in order for more patients to qualify for public programs. The fragmented nature, complex organization, limited access, and uncertain eligibility criteria for long-term care services cause problems for individuals with dementia and their families. The physician is commonly responsible for coordinating medical services, but there is no analogous person to coordinate long-term care, mental health, social, and aging services. The concern here is for clients to have a person to turn to for information, and to begin planning service needs as soon as possible so that long-term care decisions are not made in a crisis atmosphere.

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Ch. 1Dementia: Prospects and Policies 39 One mechanism to begin service planning would be to refer persons who receive the diagnosis of a disorder causing dementia to another professional or organization that can deal with the family and client in planning and coordinating services. This role is variously referred to by such terms as case management, case coordination, or linkage. Having such a professional available for referral from physicians would greatly improve the rational provision of services, but the costs are uncertain. Results from a national demonstration project to study case management and some alternatives (the Channeling project, supported by the Health Care Financing Administration will be available for analysis in late 1986, and information from that analysis will bear directly on policy regarding case management). A third issue related to diagnosis and treatment concerns methods of diagnosis. The National Institute of Neurological and Communicative Disorders and Stroke (NINCDS), NIA, ADRDA, and the American Psychiatric Association each have published general criteria for diagnosis of dementing conditions, but none is specific as to which tests should be ordered and how they should be interpreted, Consensus may not be possible or advisable, but current criteria are not useful for the general practitioner trying to determine the diagnosis of a patient. An NIH consensus conference on diagnosis of dementia will be held in July 1987, and may help address this need. One recent bill passed by Congress and signed by the President (Public Law 99-509) will establish up to 10 centers for diagnosis and treatment of dementing disorders. These would be distinct in function from the existing biomedical research centers, although they might be related geographically and administratively. The State of California has established six such centers, and reports that, even without publicity, the centers cannot meet demand for service (34). The centers are intended to diagnose and treat local cases of dementia, foster research, provide training for health professionals, aid families, and collect and analyze standardized information of use in planning services. California reports that budget cutbacks at the State level have seriously impaired delivery of the expected services at the State-supported centers (34)! Diagnosis and treatment centers could be useful in training, setting standards for care, and focusing clinical research, but they should not be expected to make the diagnosis and treat all cases of dementia in the United States. The cutbacks California has reported could also occur at the national level. Legal and Ethical Concerns Decisions about medical care, family finances, and other important topics are often difficult enough even when all parties are mentally competent. They become even more difficult when someone has dementia. Eventually decisions must be made on behalf of the individualsdecisions about driving an automobile, working, controlling financial assets, or participating in research that may not be of direct benefit. Such decisions are particularly difficult when someones employment involves professional work that is not closely supervised, such as medicine or law, yet these are jobs in which good judgment is essential, State and Federal laws include several ways to appoint someone to make decisions for another person. Guardians and conservators can be appointed by a court following a procedure to decide that an individual is indeed incapable of autonomous choice. Durable powers of attorney allow a person to set certain constraints on finances or medical care and to appoint someone to make decisions before becoming mentally incompetent. Living wills can indicate what types of medical care an individual would wish to receive or refuse. Each of these mechanisms for making decisions raises difficult questions, At what point is someone mentally incompetent? That is not a purely medical or purely legal question, and competence (legally defined) depends not only on the individuals mental ability, but also on the type of decision being made. Other questions include who is to oversee the decisions made by an appointed surrogate and how someone can be protected from conflicts of interest. Few of these questions can be directly addressed by Federal legislation.

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40 Losing Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias Most are now being decided through the judicial system at both the State and Federal levels. Many States have also passed or considered laws about living wills, powers of attorney, guardianship, and conservatorship. Legal issues related to Federal programs such as Medicare and Medicaid are also important. A family that receives legal advice soon after a diagnosis of progressive dementia is made may transfer the assets of the person with dementia more quickly, and thus establish patient eligibility for Medicaid sooner. Medicaid law stipulates that patient assets cannot be transferred for purposes of establishing Medicaid eligibility, and assets cannot have been transferred more recently than 2 years before becoming eligible. In most cases of dementia, assets would be transferred because of mental incompetence of the patient, but the burden of proof rests with the family. If transfer is completed early in someones illness, the person is more likely to be eligible for Medicaid by the time nursing home care is needed. These considerations make asset transfer a particularly difficult issue for families and State Medicaid administrators. Families benefit from early advice to legally transfer someones assets, but individuals rights to control their possessions must also be protected. And Medicaid is not intended to pay for the care of those who have impoverished themselves only on paper. Medicaid administrators would prefer to target their resources to those who need medical services and cannot afford them. The degree of responsibility of families in this context is unresolved. Idaho attempted to make children financially responsible for the care of their elderly parents in a 1983 law, but the legislation resulted in few recovered funds, was ruled in violation of Federal statutes, and was politically unpopular. No clear legal method can resolve the dilemma, and those with different ideological views differ markedly about the form a remedy would take. The issue might become moot if the incentive to rely exclusively on Medicaid to cover long-term care were reduced significantly. The incentive is strong now because Medicaid is the only public program available, and lower incentives would require a substantially higher rate of private financing (e.g., long-term care insurance, life care communities, or private savings) or availability of alternative publicly financed long-term care services. Another set of legal problems arises in government income support and health care programs. Those entitled to income and health benefits who are deemed mentally incompetent generally have a representative payee designated by the program disbursing funds. The representative payee becomes, in effect, the individuals guardian for social security payments. Yet the legal processes of establishing guardianship are not necessarily recognized by the Social Security Administration, the Veterans Administration, or other government agencies. Legal proceedings may be taken into account, but the agencies own determinations carry more weight, despite being much less formal and providing less protection for the individuals rights. Representative payees receive funds for an estimated 4 million to 5 million Americans. The Department of Health and Human Services has been sued on this issue, in Jordan v. Heckler (U.S. District Court, Western Oklahoma, CIV-79-944-W, Jan. 18, 1985) and the case is pending. Section 16 of the Social Security Disability Benefits Reform Act of 1984 (Public Law 98-460) mandated an annual accounting of representative payees, and sought a report on the proposed accounting system to be prepared for Congress in 1985. A sixpage report was submitted in September 1985 (110), but it contained no data on rates of auditing or details about ascertaining mental competence for purposes of assigning representative payees. Nor did it describe procedures for identifying misuse of funds or special safeguards for those judged mentally incompetent who are cared for outside State mental institutions. Education and Training providing high-quality services for those with dementia presumes the availability of trained people to deliver them. The sudden increase in awareness about dementia has meant that few centers are expert in care and research on this topic. Efforts to correct that deficiency have begun in the last 5 years, but most of those who care for individuals with dementia have never had special training.

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Ch. 1Dementia: Prospects and Policies 41 Family members and other informal caregivers need information about the nature of the diseases and how their daily lives might change. That knowledge can improve their ability to plan and anticipate problems. They also need information about how to provide care. Persons with dementia are increasingly receiving special care, yet the results of innovations are not widely disseminated. When they are published, it is frequently in professional journals not readily available to family members. Health professionals can assist by preparing books, pamphlets, videotapes, and other educational materials intended for family caregivers. A few such materials are available: a guide to home care has been prepared (4), and several books have been published in recent years (21, 48,74,84). The care of someone with dementia, as with other chronic illnesses, demands a range of skills and duration of service that no individual can fully supply. That realization has led to the development of interdisciplinary teams consisting of physicians, nurses, psychologists, social workers, and others. Multidisciplinary teams can better coordinate different services and bring their various areas of expertise to bear on the problems of someone with dementia. Physicians now in general practice have had little formal training in geriatrics, although those who graduated from medical schools recently are likely to have had some courses, Attention to dementia has increased dramatically in some specialties, particularly neurology and psychiatry. Other specialties, such as family practice and internal medicine, are also publishing more articles, developing continuing education courses, and modifying medical school and residency curricula to include more material about dementing illness. Physician training in geriatrics should be improved by supportive provisions in the Omnibus Health Act of 1986 (Public Law 99-660). The results of such efforts should be felt over the next decade. The physicians role in dementing illness extends well beyond making a diagnosis and rendering medical treatment. It also involves interacting with the care team and referring patients and their families to support groups, social services, and longterm care agencies. Nurses are the backbone of long-term care, but long-term care is a low prestige and low paying specialty among these professionals. A shortfall of 75,000 nurses in long-term care is projected by 1990 (111). The medical training that nurses receive may not prepare them for the predominantly administrative and supervisory roles they perform in long-term care settings, and coverage of dementia varies among nursing schools even more than among medical schools. Geriatric nurse practitioners, who receive special training in geriatrics, typically learn about the medical needs of older people, including coverage of dementia, and can perform many of the diagnostic, assessment, and treatment functions of physicians. They also generally learn about the service delivery system and how to coordinate services. They can form abridge between the medical and social service systems, and are less costly to use than physicians. Nurses aides provide an estimated 80 to 90 percent of direct patient contact hours in long-term care (1,39). Yet they are poorly paid (usually minimum wage), have low educational levels, and have high turnover rates (45,49). Nurses aides frequently have different socioeconomic and cultural backgrounds than those of their clients. The responsibility to train nurses aides falls to longterm care facilities. Administrators are reluctant to invest heavily in training because aides are unlikely to remain long at the facility, but patient care depends on such training. Even those facilities that do wish to train aides have been hampered by lack of materials on dementia. Materials for training have recently become available through a cooperative effort of ADRDA and the American Health Care Association (44), and through the Hillhaven Corp. (91). Other professionals are also involved in the care of those with dementia. Complete care frequently involves social workers, psychologists, physical and occupational therapists, speech therapists, and administrators who are familiar with the problems faced by individuals with dementia and knowledgeable about available services. The Federal Government could play a critical role in ensuring that health and social service personnel working with persons with dementia receive

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... 42 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias the education and training necessary to deliver high-quality care. This role extends to educational institutions, programs that train professionals, and facilities that provide care. Disseminating information about care to professional networks, family support groups, and the lay press can bean important function. The role of the Federal Government in providing information is most important in those areas in which it predominates (e.g., biomedical research, health services research, and how to use government programs). One example is the Alzheimers Resource Center of New York City, which is preparing a book on nationwide resources about dementia available through the network of Area Agencies on Aging and State Units on Aging. The effort is the result of cooperation between a local chapter of ADRDA, the New York State Department for the Aging, and the Administration on Aging. Accreditation of educational programs that train health and social service professionals is generally performed at the State level, but it is subject to Federal guidelines for those services reimbursed by Federal monies (e.g., Medicare and Medicaid). Licensure of professionals is also largely a State function, subject to Federal standards. Training and staffing requirements for acute, mental health, and long-term care facilities are written by States subject to Federal regulations. Requiring training about the care needs of those with dementia could be incorporated into certification guidelines. Although certification is a State function, the Federal Government could make receipt of Federal funds conditional on certain certification requirements. Direct funding of training programs for physicians, nurses, and other health professionals is supported by the Department of Health and Human Services and the Veterans Administration. Continued support, with increased emphasis on geriatrics and particularly dementia, is likely to result in faculty whose talents are multiplied by teaching others to tackle the problems related to dementia. Delivery of Long-Term Care Formal long-term care services for persons with dementia are provided in nursing homes, board and care facilities, day care centers, mental health facilities, or individuals homes (see table 1-6). Until recently, there has been little study of which services are used or needed by persons with dementia and by their caregivers. Equally little is known about which settings are best suited to deliver many of the needed services. Some studies suggest that 40 to 75 percent of those in nursing homes have dementia; data on prevalence of dementia in other settings are unavailable. Individuals with dementia often need personal care, chore, and homemaker services in addition toand often more thanmedical care. Personal and social services are less widely available and less likely than medical care to be covered by government programs. Families may need temporary respite from continual supervision and care, but few agencies deliver care that is intended to relieve the burden of caregivers rather than patients (although most services do both). Who Delivers Care? Several factors determine who delivers longterm care for persons with dementia, For any one person, care may come from family at home, day care centers, home care providers, or a nursing home. Which provider is most appropriate depends on the extent of family and community informal supports, the quality and range of available services, the individuals symptoms, and the cost of the various options. Families play a predominant role in providing long-term care for older Americans. A General Accounting Office study of the elderly population in Cleveland conducted in 1975 concluded that families were providing more than 50 percent of all long-term care services received, and that as the impairment of the patient increased, so did the proportion of services provided by the family. For the extremely impaired group, families provided 80 percent of needed services (107). The degree of informal support may diminish in coming decades, however, for several reasons. Those most at risk of developing dementia are people in their eighties, and the children and spouses of such individuals are also likely to be older and themselves at risk of disability. At the same time, the declining birth rate in the United States has

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Ch. lDementia: Prospects and Policies l 43 reduced the proportion of those who will be available to care for tomorrows older people. The rapid influx of women into the work force also portends reduced availability of family caregivers; although women today report that work is important, one study found that they act as though they give caregiving priority over employment in most cases (12). Rising divorce rates and remarriage rates also complicate determining who will render care to an older relative; a person newly married into a family may feel less obliged to care for the new spouses parent with dementia. Finally, the growing mobility of families increases geographic dispersion, and may make family caregiving Iess likely. Each of these trends weakens the informal care system, and may increase dependence on government services. Caregiver Support The primary needs of informal caregivers are respite care, information about the diseases and care methods, information about services, and a broadened range of services. Family members efforts can be aided by the Federal Government by giving them optimal information (especially that arising from federally supported research), assisting them in finding out about or obtaining services, and extending some benefits to caregivers and the person needing care as a unit, rather than restricting them to the individual with dementia. Range of Services Caregivers believe that more services should be available to care for individuals with dementia. The caregiver survey conducted for OTA found that the majority of those who listed respite care, adult day care, board and care, and nursing home care as (essential either knew these services were not available or did not know if they were available. That finding suggests that there is an unmet need both for services and for information about them. Increasing the number of choices for care of persons with dementia will not necessarily diminish demand for nursing home care or reduce institutional care costs borne by government. Day and home care is much more widely available in the United Kingdom, for example, but rates of nursing home residency are not significantly lower (43). Community-based care has not led to cost savings over nursing home care according to many recent studies (120). Some studies, however, report better patient outcomes with home care, and-of particular importance for persons with dementia who tend to reside for long periods in nursing homes once admittedstudies have not predicted what the benefits of coordinated, expanded home care services might be for older, chronically impaired individuals who do not meet the skilled care requirement but, rather, need ongoing maintenance care (52). Patient Assessment and Eligibility for Services Assessment is the process of identifying, describing, and evaluating patient characteristics associated with illness. While diagnosis of a dementing illness identifies the disease, assessment describes its impact on the individual, quantifies its severity, and is therefore essential in determining longterm care needs. Eligibility for Medicare and Medicaid long-term care services and reimbursement levels for covered services are based primarily on the medical and nursing care needs of the individual. Some States are now using assessment instruments that measure cognitive and behavioral deficits and limitations in activities of daily living to determine Medicaid eligibility or reimbursement levels. These case mix assessments can reduce incentives to discriminate against heavy care patients, but have not been rigorously studied to ascertain their impact on persons with dementia. The RUG-II classification system in New York, for example, places 22 percent of those with diagnoses indicating dementia into the least reimbursed category (32). That placement could be either because these people indeed have only minimal disability (and might be better cared for outside a nursing home), because the diagnosis is incorrect, or because the RUG-II assessment process does not accurately capture the disabilities of such individuals. Other case mix assessments may retain that uncertainty for those with dementia. It is important to determine whether the individuals do not need to be in a nursing home or whether their needs are not being identified by the assessment proce

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44 Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Demntias dure, because low reimbursement will incline nursing homes against admitting individuals who fall in the minimal disability category. In New York, that has already occurred, with a marked drop in admissions of those showing minimal disability as measured by RUG-II assessment. It will be important to find out if those with dementia constitute a large fraction of that group and if there are alternative methods of care for those not admitted to nursing homes. The assessment process is often the starting point for planning services, educating family members, and referring people to support groups and other community resources. Early engagement of a formal assessment process can thus serve as a focal point for bringing health professionals and families together to determine the prognosis for the individual with dementia, to learn about care options, and to find sources of relevant information. Special Services for Individuals With Dementia An increasing number of long-term care facilities and agencies are developing special services for persons with dementia, but these services are not yet widely available and most such individuals are treated elsewhere. Preliminary data suggest that 1 to 2 percent of nursing home residents with dementia are in special care units. These facilities appear to be raising the standard of care, and are focusing attention on the large subpopulation of nursing home residents who suffer from dementia. Special care involves training of nurses and aides, redesign of rooms and common areas, and activities intended to take advantage of spared mental functions, Adapting the environment to altered needs of those with dementia appears to be useful, but the optimal way to do so is a topic of debate. The number of special care units has increased dramatically in recent years, yet no national body is responsible for identifying them, coordinating studies (to reduce duplication and disseminate results rapidly), or evaluating their efficacy. Several policy issues are raised by special care units and programs. First, there is an apparent shortage of people highly knowledgeable about dementia available to staff such units or evaluate them. Second, evaluation and coordination of different units is currently haphazard. Third, standards for quality are unclear. Fourth, the type of individual eligible for care on special units is not uniform among different units, and optimal care methods may differ according to severity, type of symptoms, or disease. Finally, the costs and fair reimbursement rates for special units merit further inquiry. Do special care units cost more? Should they be paid more to care for those with dementia? Will special reimbursement lead to inequitable treatment of other types of patients, or will failure to pay more for those with dementia diminish their care? Quality Assurance Persons with dementia are at particular risk of receiving substandard care. They cannot communicate effectively, and their complaints may be discounted or ascribed to mental instability or misunderstanding. Reduced intellectual abilities interfere with rational consumer choice, an important component of quality assurance. Family members can act on behalf of individuals with dementia to assess and ensure the quality of care. If they are not available or the family is not cohesive, then ombudsmen, case managers, or designated surrogates must do so. Quality of care in hospitals paid by Medicare is subject to the review of Professional Review Organizations. outpatient and ambulatory acute care are less subject to direct inspection. The threat of malpractice is a strong incentive for providing adequate care in most acute care settings, but it has not been widely applied in long-term care settings. The quality of care in nursing homes is regulated by States, subject to certification standards for Medicare and Medicaid. The system for assessing quality under Medicaid and Medicare is changing from a focus on inspection of facilities and physical plant to one that adds a client-centered assessment. Residents with dementia, however, are unlikely to be able to answer many of the questions about quality; inspection of their physical condition will yield clues as to their physical care, but will not assess overall quality of staff interactions or the residents emotional satisfaction and staff regard for the persons dignity. These con-

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Ch. lDementia: Prospects and Policies 45 cerns are difficult to solve through purely regulatory means. Family assessment of a relatives health and happiness is another means of quality assurance. It is not available to residents without families, however, and its efficacy hinges on facilities willingness to attend to suggestions or the availability of alternative care settings if they do not. For Medicare and Medicaid administrators, only limited options exist to ensure compliance with care standards. In many areas, the scarcity of nursing home beds makes moving out of a poorly managed facility an unattractive option for the resident because an alternative one may not be available; that same scarcity makes State agencies reluctant to close down facilities. Less stringent enforcement actions have been successful in some States, and legislation permitting more use of them might be useful (see ch. 10). Professional organizations (e.g., American Health Care Association and the American Association of Homes for the Aging), proprietary and nonprofit nursing home chains, and new programs in teaching nursing homes can also promote higher standards and adherence to existing standards. Day care, home care, board and care, and other community-based settings are licensed and regulated much less than nursing homes. Information about quality in such settings is sparse and much less thoroughly analyzed than information regarding quality of care in hospitals or nursing homes, Payment levels are generally lower and tend to be direct rather than through public subsidy, making any government regulation beyond licensing unlikely. Family or case manager assessment of quality is thus the main assurance of quality, perhaps supplemented by final resort to the legal system. Organizations (e.g., the National Association for Home Care and the National Council on the Aging) can help develop guidelines for care and suggest means of quality assurance. Federal and State Governments could also choose to have a direct role. If the range of services is expanded, examination of the quality of care in day care, home care, and board and care settings would bean important topic for health services research to identify innovative ways to ensure that individuals have quality care that respects their rights and preserves their dignity. Financing Long-Term Care Financing long-term care for persons with dementia is one of the policy issues of greatest concern to caregivers and policymakers, and about which there is the least consensus. Policy options fall into several groups, according to the range of services reimbursed; the source of payment (individual, Medicaid, Medicare, insurance); and the relative responsibility of individuals and government. These factors are woven together in a confusingly complex fabric of existing policies and priorities. Caregivers would prefer to see an expanded range of services available, whatever the source of payment. Government program administrators, legislators, and insurers also wish to fund the broadest number of options, but they do not want to leave commitments open-ended or to pay for services used by those who do not need them. The extremely complex set of laws, regulations, and contract arrangements for long-term care services reflects that concern for overutilization. Restricting payment to institutional settings has been one way to discourage illegitimate use and to attempt to concentrate resources on those who most obviously need them. The source of payment determines not only who pays but also which services are covered and how those services are regulated and financed. Acute care under Medicare, for example, is paid under the diagnosis-related group payment system in most States, covers only some medically necessary services, and is relatively uniformfrom the point of view of the individualthroughout the United States. Medicaid, in contrast, varies tremendously among the States in its eligibility criteria, funding levels, extent of coverage of nonmedical services, access to home services, method of payment, and enforcement of quality standardsfor both acute and long-term care (19). Options for financing long-term care also differ in degree of public subsidy, ranging from complete private financing to heavy public subsidy. At one end of the scale, private financing would include: l direct individual or family payments not derived from government income programs,

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46 l Losing a Million Minds: Confronting the Tragedy of A/zheimers Disease and Other Dementias l l l group cooperatives (for bargaining reduced rates with providers and insurers), charities, and conversion of home equity or other illiquid assets. Numerous options that combine private financing with indirect public subsidy have been suggested: l l l l l l l l direct payments derived in part from government income programs; volunteer programs (generally by tax-subsidized nonprofit organizations, but also including government aid as in ACTIONs Senior Companion programs); social/lhealth maintenance organizations (S/HMOs); cooperatives (composed of groups of individuals with similar needs either directly providing care on a mutual help basis, directly financing services, or sharing information about services and financing options); private long-term care insurance (tax-subsidized); life care communities (tax-subsidized); dependent care tax deductions or tax credits; and individual medical or retirement accounts (tax-subsidized). Finally, financing could involve increased direct public subsidy, with individuals contributing partial costs through expanded Medicaid eligibility, range of services, or level of payment, and through Medicare coverage of long-term care services. Policy changes affecting Medicaid and Medicare could involve either small incremental changes in eligibility, scope of services, or reimbursement mechanisms or major long-term care reform. Major reform might entail private options dovetailed to public programs, publicly managed voluntary insurance options, or mandatory long-term care coverage. Options that extend complete public subsidy of all costs have not been discussed because proposals for such programs are not before the U.S. Congress. The full range of policy options is more fully discussed in chapter 12, with brief discussions of some of the advantages and disadvantages of each. They are also covered in the report of the OTA workshop held in May 1986, to be released by the Senate Committee on Labor and Human Resources and the House Select Committee on Aging. In addition, reports on long-term care financing are expected from the Brookings Institution and the Congressional Budget Office. Secretary of Health and Human Services Otis Bowen transmitted a report on catastrophic illness to the President in November 1986. That report discussed acute medical care and also recommended several changes to improve long-term care financing, noting that long-term care is the most likely catastrophic illness risk faced by individuals and families. Long-term care recommendations included: 1) Federal and private support for a broad educational effort regarding risks, costs, and options; 2) establishment of Individual Medical Accounts and withdrawal provisions for Individual Retirement Accounts (see ch. 12); and 3) support for private long-term insurance through tax provisions and removal of employer disincentives to cover long-term care in health insurance plans. Preparation of the report involved several public hearings in different regions, deliberations by three committees, and is based in part on a report to the Secretary by the Private/public Sector Advisory Committee on Catastrophic Illness (86). Financing of long-term care is one of the issues affecting individuals with dementia (and their families) that is most sensitive to public policies. Through Medicaid, Federal and State Governments are important payers of long-term care, covering the majority of those in nursing homes. The amounts paid by State and Federal Governments for nursing home care are roughly equal to total payments by individuals. The American Health Care Association estimates that 70 percent of nursing home residents are covered by Medicaid, and the figure is well over 80 percent for some States (58). The proportion of patients covered by Medicaid is higher than its fraction of payments for two reasons: 1. some patients on Medicaid also receive some income (from social security or other sources) that is paid to the facility to reduce Medicaid payments, and

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Ch. 1Dementia: Prospects and Policies 47 2. levels of reimbursement per person are generally lower through Medicaid than other sources of payment. The dominance of Medicaid means that decisions about the Medicaid program have a great effect on how nursing homes operate. Policies affecting nursing home coverage under Medicare affect a smaller, but still significant, fraction of nursing homes. Because of the absence of private insurers in long-term care, Federal and State Government decisions about financing are pivotal in determining access to and availability of day care, home care, respite care, and other services outside nursing homes. Biomedical Research Biomedical research includes basic biological, clinical, and public health research. It roughly corresponds to the type of research conducted under the auspices of the National Institutes of Health (either directly or through universities and medical centers). Basic research is conducted in the pursuit of scientific knowledge without primary regard for the applications of such knowledge. Clinical research applies basic knowledge in the search for preventive measures, treatments, and methods of diagnosis. Public health research builds on both basic and clinical research and applies it to population aggregates. The most common type of dementia, Alzheimers disease, cannot be prevented or its symptoms reversed with current knowledge and techniques. The severity of future medical and social problems could be dramatically reduced if an effective drug or surgical treatment were found to significantly reduce symptoms or arrest the disease. Only a small proportion of those expected to develop dementia now have it, so finding a means of prevention could drastically reduce the projected number of people affected. NIA, NIMH, and NINCDS are the three primary agencies supporting biomedical research (see table 1-8). Federal support for biomedical research (excluding funding for the Administration on Aging (AOA) and the Health Care Financing Administrati o n ( HCFA ), whose research is primarily on health service delivery) has gone from less than $4 million in 1976 to over $65 million estimated for 1987. The number of publications on Alzheimers disease, dementia, and senility leapt from 30 in 1972 to 87 in 1976, and then to 548 in 1985, reflecting the importance of increased Federal support. Nongovernment organizations such as ADRDA, the John Douglas French Foundation on Alzheimers Disease, the American Federation for Aging Research, and the Howard Hughes Medical Institute are also contributing research funds, at levels corresponding to 5 to 10 percent of Federal funding, Private pharmaceutical and medical products companies are supporting applied research to find effective drugs and diagnostic devices, but their work builds on the basic research supported by the Federal Government. Biomedical research on dementing conditions is likely to yield benefits in addition to its clinical Table l-8.Federal Funding for Research on Dementia, 1976-87 (thousand dollars) Agenc v a 1976 1977 1978 1979 1980 1981 1982 1983 1984 1985 1986b 1986C 198 7 d NIA . . . 857 1,500 1,960 4,142 4,211 5,196 8,054 11,848 21,456 28,830 34,048 32,691 40,760 NINCDS . . .2,314 2,333 2,422 2,844 4,960 5,427 6,243 8,678 11,700 12,826 14,030 13,427 15,900 NIMH . . 728 815 790 1,315 2,151 4,700 4,800 5,000 5,600 5,750 6,000 5,750 6,000 NIAID . . 1,381 1,775 1,394 1,256 1,041 1,336 1,211 1,247 1,192 1,412 DRR . . . 604 709 1,034 1,055 1,010 1,062 AOA . . . 164 1,128 900 627 600 HCFA . . 1,200 Total DHHS .3,899 4,648 5,172 9,682 13,097 16,717 20,353 27,171 40,965 50,779 57,280 54,697 66,93 4 aNIA (f.Jatk~nal Institute on Aging), NINCDS (f.Jational Institute on Neurological and Communicative Disorders and Stroke), NIMH (National Institute Of Mental Health), NIAID (National Institute on Allergy and Infectious Diseases), DRR (Division of Research Resources, National Institutes of Health), AOA (Administration on Aging), and HCFA (Health Care Financing Administration), All agencies are in the U.S Department of Health and Human Services. bAPProPriated by Congress in Public Law 99-ITfJ CEStlrnateS following sequestration of funding under the Deficit Reduction Act of 1985. dEstimates based on Continuing Resolution appropriations for Fiscal Year 1987 (P, L, 99.500), with individual figures taken from agency budget Off iCeS and direct appropriations. SOURCE National Institute on Aging Budget Office, 1988; National Institute of Mental Health Budget Office, 1986; and Progress Report on A/zheirners Disease: Vo/urrre //, NIH Publication 84-2500, July 1984; modified by the Office of Technology Assessment in light of fiscal year 1987 appropriations, Estimates obtained from individual agency budget offices for years 1988 and 1987.

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48 Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias applications. Knowledge of the brain is still scant in comparison to the size of the task, and the study of the nervous systemneuroscienceis one of the most exciting areas in biology today. Support for research on dementing conditions will likely support work that will increase such knowledge in these disciplines. Research on dementia could, in fact, become a focus for neuroscience, just as cancer research led to many important advances in molecular biology and the spawning of biotechnology. Major successes in biomedical research could also substantially reduce the costs and projected social and personal burdens of dementia. In other areas of research, successful prevention or treatment may actually lead to increased health care costs (e.g., a death prevented in middle age can increase aggregate costs because the person lives longer to have more episodes of ill health, each of which involves costs). Prevention or effective treatment of dementing disorders is likely to be highly cost-effective in the long term because the financial impact is severe, chronic, and occurs at the end of life. An effective means of preventing Alzheimers disease would, for example, dramatically reduce the need for nursing homes and costly medical care without necessarily leading to substantially longer life or new medical problems. Other medical problems would likely cost less, rather than more. An exclusive focus on biomedical research is unwise, however. Although increased funding makes scientific discoveries more likely, such discoveries will not necessarily lead to a means of prevention or cure, diagnostic tests, or even effective treatments. The consequences of new scientific findings may not be known for several decades, and may only much later improve clinical care. Scientific problems posed by disorders causing dementia are likely to yield to scientific inquiry, but public policy that presumes a revolution in care methodsbased on discoveries not yet made is not advisable. Health Services Research Health services research, as it applies to the subject of this report, is the multidisciplinary study of those with dementia and of the systems that serve them. It includes the community and family, but excludes biomedical research. Some types of research, such as epidemiology and patient assessment, bridge the gap between health services and biomedical research. Study of how to care for individuals, especially evaluation of methods that do not employ drugs or medical devices, is included in health services research, although some elements are also clinical. Topics range from studying how best to care for persons with dementia (at home, in nursing homes, or in day care centers) to evaluating different methods of paying for long-term care services. Health services research tends to be supported by different agencies than biomedical research, although there is some overlap (NIMH and NIA, for example, mainly support biomedical research but are also among the agencies providing the most support for health services research on dementia). The type of information derived from health services research is crucial to rational planning of public policy and informed consumer choice. One analyst has observed, however, that public policy is hampered by the woeful state of information about almost all social aspects of senile dementia and the deplorable quality of studies of intervention effects (58). Health services research related to dementia was the topic of an OTA workshop held in February 1986, cosponsored by the Subcommittee on Aging of the Senate Committee on Labor and Human Resources, the Human Services Subcommittee of the House Select Committee on Aging, and ADRDA. Results of that workshop are summarized here, and are discussed more fully in another document available through the Senate Committee on Labor and Human Resources and the House Select Committee on Aging. Discussions at that workshop revolved around six general topics: 1. epidemiology, 2. patient assessment, 3. service needs, 4. availability of and access to services, 5. cost of care, and 6. quality assurance and measurements of outcome. Several points of consensus emerged at the workshop. First, dementing disorders are a sub-

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Ch. lDementia: Prospects and Policies 49 stantial problem for the health care system, particularly in long-term care. Second, little is known about them in any setting. Third, data have been gathered that might shed light on current policies, but the data have not been analyzed with a view to discerning the needs of the large number of individuals who have dementia (71). Finally, there is a need to intensify the study of health care delivery to individuals with dementia and their families. The few studies of health services that have focused specifically on the needs of individuals with dementia stand in stark contrast to the amount of information about treatment of specific groups of comparable size in acute care (e.g., persons with diabetes). That lack reflects both a general paucity of information about long-term care services, and a failure of long-term care studies to focus on the large subpopulation with dementia. Many recent and ongoing efforts to gather data about long-term care do contain information about individuals with dementia. No single survey is ideal in assessing needs, disabilities, severity of cognitive impairment, and availability of informal supports, but the breadth and depth of the information collected across the data sources suggest that a substantial understanding of health service questions could be acquired by analysis of the data sets (73). Efforts to analyze such data sets would be much less costly than beginning extensive new surveys, and could answer some important questions and identify other key ones to address in future demonstrations, Some questions are not addressed, however, in available data sets (e.g., whether special care is effective or economical, or the long-term impact of respite care on family stress, functional disability, and costs). Analysis of such questions will require new demonstrations, but these should start from the most sophisticated understanding of current data available. Several important questions about long-term care need to be resolved before prudent public policy on health services can be enacted. It is frequently argued, for example, that in-home services can help physically and cognitively impaired people to remain in their homes. Yet a growing body of evidence indicates that expanded use of in-home services does not generally reduce the need for nursing home beds (120). Such research has failed to separately analyze those with and without dementia, to focus on specific target groups (99), or to concentrate on long-stay patients whose needs are more supervisory than medical (52). Persons with dementia fall into the groups about which there is the least informationthose needing supervisory care for long periods rather than skilled care for short periods. It is thus unclear whether in-home and other respite services will supplement, supplant, or increase nursing home care for those with dementia. Special attention to this group may prove crucial to designing long-term care services in general. A large proportion of nursing home residents, particularly long-stay residents, are individuals with dementia who require 24-hour supervision, a service that is not generally offered in the home. Conversely, persons needing long-term care but not 24-hour supervision (e.g., those with arthritis or paralysis due to stroke) may benefit greatly from home care services but are less likely to be in a nursing home. The lack of correlation between availability of home services and reduction of nursing home care may thus be explained, at least in part, as use by different types of individuals. Only further study of long-term care service delivery in various settings can resolve that and other questions of interest to providers and policy makers. Research on delivery of care can build on efforts by States, long-term care providers, and family support groups, but Federal coordination would be useful to reduce needless duplication of effort, to ensure wide dissemination of relevant results (a clearinghouse function), and to maintain sufficient focus on Federal issues (e.g., quality assurance, cost containment, and payment). Health services research will determine the future basis for public and private activities in financing, quality assurance, training, and service delivery to persons with dementia. Research in this field does not necessarily depend on projects including only individuals with dementia. Evaluation of more general long-term care demonstrations can shed light on how those with dementia use such care. HCFA is supporting a study of reimbursement in the State of Texas, for example, that covers a sample of all nursing home patients, not just those with dementia. A part of the informa-

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50 Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias tion gathered will include assessment of cognitive status that can be compared with existing studies on those with dementia in the community. That study should permit an evaluation of the influence of cognitive impairment per se, which has not been previously possible. Federal spending for health services research in 1984 reached $200 million. That was onetwentieth of 1 percent of total health care spending that year ($387 billion), one-fifth of 1 percent of Federal health care spending ($111.9 billion), and 3.2 percent of the Federal budget for biomedical research ($6.15 billion). A survey of Federal agencies supporting health services research on dementia was conducted in April 1986 by the Congressional Research Service (81, cited in 119). The survey found that AOA was funding 12 projects, with the following spending history: $163,817 for two projects in fiscal year 1984; $1,127,618 for 12 projects in fiscal year 1985; and $431,400 continuing and $500,000 planned new spending in fiscal year 1986. NIA was planning $426,000 for fiscal year 1986. NIMH was funding three health service research projects that would include a component focused on dementia in fiscal year 1983, four in fiscal year 1984, seven in fiscal year 1985, and seven in fiscal year 1986, but the budget specific to dementia was not estimated. AOA, NIMH, and HCFA were each soliciting proposals for research that included analysis of health services for those with dementia. The National Center for Health Services Research (NCHSR) and Health Care Technology Assessment had not funded specific research and was not soliciting projects. Estimated Federal spending on health services research related to dementia was thus in the range of $1.3 million to $2 million in 1986. That corresponds to roughly one-two-hundredth of 1 percent of the estimated national costs of dementing illness ($24 billion to $48 billion), one-thirtieth of 1 percent of Federal payments for long-term care of those with dementia ($4.4 billion), and 3 percent of biomedical research on dementia ($54 million). The need for information about long-term care of those with dementia in order to plan national health policy has prompted Congress to fund research in this area. The final column in table 1-8 shows the estimated levels of research funding provided by the Continuing Appropriations for fiscal year 1987 (called the continuing resolution Public Law 99-500). The bulk of funding is for basic and clinical research, but also includes $1.2 million for HCFA to develop and fund three demonstration projects on respite care for families of those with Alzheimers disease and related disorders. The omnibus Budget Reconciliation Act of 1986 (OBRA-Public Law 99-509) authorizes up to $40 million to create 5 to 10 regional centers to diagnose and treat individuals with Alzheimers disease and related disorders. Funding will come from Medicare payments for those already Medicare eligible. (The continuing resolution limits funding for demonstration projects under Medicare, and a few experts contacted by OTA believe that this limit might apply to the Alzheimers disease diagnosis and treatment centers. Most consulted, however, believed that the restrictive language would not apply, and the centers would be funded as specified in OBRA.) OBRA also authorized $1 million for fiscal year 1987, and $2 million in each of the three following years, to develop a respite care demonstration program in New Jersey under the States Medicaid program. HCFA funding for health services research will be supplemented by a group of projects supported by a combination of private and government sources. The Robert Wood Johnson Foundation, Administration on Aging, and ADRDA are jointly planning a competitive grants program. They intend to support the development of dementia service delivery demonstration projects in a number of communities throughout the Nation. The last piece of legislation passed by the 99th Congress (Public Law 99-660) includes the Alzheimers Disease and Related Dementias Services Research Act. This law establishes a Council on Alzheimers Disease within the Department of Health and Human Services (making permanent the Task Force on Alzheimers Disease), an Advisory Panel on Alzheimers Disease (composed of 15 citizens appointed by the Director of the Office of Technology Assessment), a new group of awards for achievement in research to be bestowed by the Director of NIA, and an information clearinghouse to disseminate information about Alzheimers

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Ch. 1Dementia: Prospects and Policies l 51 disease-also administered by NIA. The act authorizes health services research to be conducted by NIA, NIMH, NCHSR/HCTA, and HCFA (beginning in October 1987) and mandates educational programs for the Social Security Administration (regarding disability policies related to dementia) and training of safety and transportation personnel about special problems in dealing with individuals who have dementia. It also authorizes increased support for training in geriatrics. Several of the provisions of the new law can go into effect without further action. The research programs and other activities authorized by the act will, however, depend on new appropriations in the 100th Congress. CHAPTER 1 REFERENCES 1. Almquist, E., and Bates, D., Training Program for Nursing Assistants and LVNs in Nursing Homes, Journal of Gerontological Nursing 6:622-627, 1980. 2. Alzheimer Task Force, Alzheimer Task Force Report Long-Term Care Coordinating Council for the Elderly, Austin, Texas, Oct. 31, 1985. 3. Alzheimers Disease and Related Disorders Association, Advocacy Update, July 31, 1985. 4. Alzheimers Disease and Related Disorders Association, Ad Hoc Committee on Planning, Jan. 9 and 10, 1986 report, 5. Alzheimers Resource Center, Caring: A Family Guide To Managing the Alzheimers Patient at Home, New York City Alzheimers Resource Center, 1986. 6. American Association of Retired Persons, ( AARP Long-Term Care Research Study, survey conducted by the Gallup Organization, Jan. 30, 1986. 7. American Psychiatric Association, Diagnostic and Statistical Manual of Mental Disorders, 3d ed. (Washington, DC: 1980). 8. Arnett, R. H., McKusick, D. R., Sonnefeld, S. T., et al., ( Projections of Health Care Spending to 1990, Health Care Financing Review 7:1-36, spring 1986. 9. Barclay, L. L., Zemcov, A., Blass, J. P., et al., Survival in Alzheimers Disease and Vascular Dementia, Neurology 35:834-840, 1985. 10. Battelle Memorial Institute, The Economics of Dementia) contract report prepared for the Office of Technology Assessment, U.S. Congress, 1984. 11. Bloom, D. E., and Korenman, SD., The Spending Habits of American Consumers, American Demographics 8:23-25, 51-54, March 1986. 12. Brody, E. M., Parent Care as a Normative Family Stress, Donald P. Kent Memorial Lecture, Gerontological Society of America, San Antonio, TX, Nov. 18, 1984. Reprinted in The Gerontologist 25: 1929, 1985. 13. Brody, E. M., Lawton, M. P., and Liebowitz, B., Senile Dementia: Public Policy and Adequate Institutional Care, American Journal of Public Health 74:1381-1383, 1984. 14. Brody, E. M., and Brody, S. J., Service Systems for the Aged, prepared for the Encyclopedia of Social Work, in press. 15. Brody, S. J., The Thirty-to-One Paradox: Health Needs and Medical Solutions National Journal 11:1869-1873, 1979. 16. Brody, S. J., and Magel, J. S., LTC: The Long and Short of It, Long-Term Care, C. Eisdorfer (cd.) (Baltimore: Johns Hopkins Press, in press). 17. Chandra, V., Bharucha, N. E., and Schoenberg, B. S., Conditions Associated With Alzheimers Disease at Death: Case Control Study, Neurology 36:209-211, 1986. 18. Chandra, V., Bharucha, N. E., and Schoenberg, B. S., Patterns of Mortality From Types of Dementia in the United States, 1971 and 1973 -1978, Neurologv 36:204-208, 1986. 19. Chavkin, D., Interstate Lamiability in Medicaid Eligibility and Reimbursement for Dementia Patients, contract report prepared for the Office of Technology Assessment, U.S. Congress, March 1986. 20. Cicirelli, Family Relationships and the Care/Management of the Dementing Elderly, The Demen tias: Policy and Management, M .L.M. Gilhooly, S.H. Zarit, and J.E. Birren (eds.) (Englewood Cliffs, NJ: Prentice-Hall, 1986). 21. Cohen, D., and Eisdorfer, C., The Loss of Self; A Family Resource for the Care of Alzheimers Disease and Related Disorders (New York: W.W. Norton, 1986). 22. Cohen, J., Holahan, J., and Liu, K., Financing Long-Term Care for the Mentally Ill: Issues and Options, working paper # 3546-01, Urban Institute, Washington, DC, May 1986. 23. Colerick, E. J., and George, L. K., Predictors of Institutionalization Among Caregivers of Patients With Alzheimers Disease, Journal of the American Geriatrics Society 34:493-498, 1986. 24. ( Coolfont Report: A PHS Plan for Prevention and Control of AIDS and the AIDS Virus, report of a Public Health Service meeting in Berkeley

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52 Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias Springs, WV, June 4-6, 1986, Public Health Reports 101:341-348, 1986. 25. Coons, D. H., A Residential Care Unit for Persons With Dementia, contract report prepared for the Office of Technology Assessment, U.S. Congress, 1986, 26. Cornelius, E., Health Care Financing Administration, personal communication, April 1986. 27. Cross, P. S., and Gurland, B. J., The Epidemiology of Dementing Disorders, contract report prepared for the Office of Technology Assessment, U.S. Congress, 1986. 28. Danish Medical Bulletin, Special Issue on Alzheimers Disease, vol. 32, Gerontology Special Supplement No. 1, February 1985, pp. 1-111. 29. Doty, P., Liu, K,, and Wiener, J., Special Report: 30 < 31, 32. 33. An Overview of Long-Term Care, Health Care Financing Review 6:69-78, 1985. Dunn, L., The Senior Respite Care Program, contract report prepared for the Office of Technology Assessment, U.S. Congress, 1986, Fields, S. D., MacKenzie, C. R., Charlson, M. E., et al., Cognitive Impairment: Can It Predict the Course of Hospitalized Patients? Journal of the American Geriatrics Society 34:579-585, 1986, Foley, W .J., Dementia Among Nursing Home Patients: Defining the Condition, Characteristics of the Demented, and Dementia on the RUG-II Classification System, contract report prepared for the Office of Technology Assessment, U.S. Congress, 1986. Folstein, M., Anthony, J. C., Parhad, I., et al., The Meaning of Cognitive Impairment in the Elderly, Journal of the American Geriatrics Society 33:228235, 1985. 34. Fox, P.J., Lindeman, D.A., and Benjamin, A.E., Status of Alzheimers Disease Diagnostic and Treatment Centers and Alzheimers Disease Research Grants in California, Institute for Health and Aging, University of California, San Francisco, January 1986. 35. French, C.J., Experiences in the Development and 36 37 Management of the Community Services Program of the Atlanta Area Chapter of Alzheimers Disease and Related Disorders Association, Inc., contract report prepared for the Office of Technology Assessment, U.S. Congress, 1986. Garfield, A., Alzheimers Disease and Related Disorders Association, Chicago, IL, personal communication, April 1986. George, L. K,, The Dynamics of Caregiver Burden, final report submitted to the American Association of Retired PersonsAndrus Foundation, Washington, DC, 1984. 38. Georgia Department of Human Resources, Office of Aging, Study Committee Report, Alzheimers Disease, Atlanta, GA, December 1985. 39. Geriatric Nursing Assistant Training Task Force, Geriatric Nursing Assistant Training in Virginia, Final Report, Department of Education of the Commonwealth of Virginia, Richmond, VA, January 1982. 40. Gordon, N. M., Assistant Director for Human Re41 42, 43. 44. 45. 46. 47. 48. 49. 50. 51. sources and Community Development, Congressional Budget Office, statement before the U.S. House of Representatives, Committee on Energy and Commerce, Subcommittee on Health and the Environment, prepared by S.H. Long, J. Rodgers, and B. Vavrichek, Congressional Budget Office, Mar. 26, 1986. Governors Committee on Alzheimers Disease, Commonwealth of Massachusetts, Boston, MA, 1985. Governors Task Force on Alzheimers Disease and Related Disorders, The Maryland Report on Alzheimers Disease and Related Disorders, State of Maryland, Annapolis, MD, June 30, 1985. Gurland, B.J., Public Health Aspects of Alzheimers Disease and Related Dementia, Alzheimer's Disease and Related Disorders: Research and Management, W.E. Kelley (cd.) (Springfield, IL: Charles C. Thomas, 1985). Gwyther, L. P., Care of Alzheimers Patients: A Manual for Nursing Home Staff (Chicago, IL: Alz heimers Disease and Related Disorders Association, 1985). Handschu, S. S., Profile of the Nurses Aide, The Gerontologist Part I, pp. 315-317, autumn 1973. Heckler, M.M., The Fight Against Alzheimers Disease) American Psychologist 40:1240-1244, 1985. Henderson, J. N., Mental Disorders Among the Elderly: Dementia and its Sociocultural Correlates, Modern Pioneers: An Interdisciplinary View of the Aged, P. Silverman (cd.) (Bloomington, IN: Indiana University Press, 1986). Heston, L. L., and White, J. A., Dementia: A Practical Guide to Alzheimer's Disease and Related Disorders (New York: W.H. Freeman, 1983). Hogstel, M, O., Auxiliary Nursing Personnel, Management of Personnel in Long-Term Care, M.O. Hogstel (cd.) (Bowie, MD: Robert J. Brady Co,, 1983). Hu, T. W., Huang, L. F., and Cartwright, W. S., Evaluation of the Costs of Caring for the Senile Demented Elderly: A Pilot Study) The Gerontologist 26:158-163, 1986. Huang, L.-F., Hu, T.-W., and Cartwright, W. S., The Economic Cost of Senile Dementia in the

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Ch, lDementia: Prospects and Policies l 5 3 52. 53, 54. 55 < 56 57, 58, 59, 60, 61. 62< 63. 64. United States, 1983) contract report prepared for the National Institute on Aging, No. 1-AG-3-2123, 1986. Hughes, S. L., (Apples and Oranges? A Review of Evaluations of Community-Based Long-Term Care, Health Services Research 20:461-488, 1985. ICF, Inc., Private Financing of Long-Term Care: Current Methods and Resources, final report submitted to the Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human Services, January 1985. ICF, Inc., The Role of Medicare in Financing the Health Care of Older Americans, submitted to American Association of Retired Persons, Washington, DC, July 1985. Intergovernmental Health Policy Project, Alzheimers Initiatives Advance, State Health Notes, No. 56, September 1985, pp. 1-3. International Classification of Diseases, 9th Revision Conference, 1975, (Geneva: World Health Organization), vol. 1, 1977 and vol. 2, 1978; modified by Coding Clinics for ICD-9 CM, American Hospital Association, various issues, Jazwiecki, T., Director, Office of Reimbursement and Financing, American Health Care Association, Washington, DC, personal communication, April 1986. Kane, R. A., Senile Dementia and Public Policy, The Dementias: Policy and Management, M.L. Gilhooly, S.H. Zarit, and J.E. Birren (eds.) (Englewood Cliffs, NJ: Prentice-Hall, 1986). Kane, R.L., Acute and Long-Term Care: Decisions and Decisionmakers, paper prepared for the Conference on the Impact of Technology on LongTerm Care, Feb. 16-18, 1983, sponsored by the Office of Technology Assessment, U.S. Congress, Project HOPE, the George Washington University Health Policy Forum, and the Institute of Medicine, National Academy of Sciences, 1983. Kansas Alzheimers and Related Diseases Task Force, Final Report to the Kansas Department on Aging, Topeka, KS, 1986. Katzman, R., The Prevalence and Malignancy of Alzheimers Disease: A Major Killer, Archives of Neurology 33:217-218, 304, 1976. Katzman, R., Aging and Age-Dependent Disease: Cognition and Dementia, America's Aging: Health in an Older Society, Committee on an Aging Society, Institute of Medicine and National Research Council (Washington, DC: National Academy Press, 1985). Katzman, R., Alzheimers Disease, New England Journal of Medicine 314:964-973, 1986. Katzman, R., Lasker, B., and Bernstein, N., Ac65 66 67. 68. 69. 70. 71 72 73 74 75 76 curacy of Diagnosis and Consequences of Misdiagnosis of Disorders Causing Dementia, contract report prepared for the Office of Technology Assessment, U.S. Congress, submitted for publication, 1986. Larson, E. B., Reifier, B. V., Sumi, S. M., et al., ( Diagnostic Tests in the Evaluation of Dementia: A Prospective Study of 200 Elderly Outpatients, Department of Medicine, University of Washington Medical Center, Seattle, WA, in press. Levit, K. R., Personal Health Care Expenditures by State: 1966 -1982, Health Care Financing Review 6:1-49, 1985. Lidoff, L., Mobilizing Community Outreach to the High-Risk Elderly: The Gatekeepers Approach, (Washington, DC: National Council on the Aging, Inc., 1984). Light, Enid, U.S. Department of Health and Human Services, National Institute of Mental Health, Program on Aging, personal communication, Apr. 19, 1986. Light, E., Lebowitz, B., and Bailey, F., CMHCs and Elderly Services: An Analysis of Direct and Indirect Services and Services Delivery Sites) submitted for publication by the U.S. Department of Health and Human Services, National Institute of Mental Health, 1986. Lindeman, D. A., Bliwise, N. G., Berkowitz, G., et al,, Development of a Uniform, Comprehensive Nomenclature and Data Collection Protocol for Brain Disorders, Institute for Health and Aging, University of California, San Francisco, June 1986. Liu, K., Analysis of Data Bases for Health Services Research on Dementia, contract report prepared for the Office of Technology Assessment, US. Congress, 1986. Liu, K., and Manton, K. G., The Length-of-Stay Pattern of Nursing Home Admissions, Medical Care 21:1211-1222, 1983. Lockery, S.A., Impact of Dementia Within Minority Groups, contract report prepared for the Office of Technology Assessment, U.S. Congress, 1986. Mace, N., and Rabins, P., The 36-Hour Day: A Family Guide To Caring for Persons With Alzheimer's Disease, Related Dementing Illnesses, and Memory Loss in Later Life (Baltimore, MD: Johns Hopkins University Press; and New York: Warner, 1981). Max, W., Lindeman, D.A., Segura, T.G., et al., Estimating the Utilization and Costs of Formal and Informal Care Provided to Brain-Impaired Adults: A Briefing Paper, Institute for Health and Aging, University of California, San Francisco, June 1986. McCall, N., Rice, T., and Sangl, J., Consumer

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54 Los/rig a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias Knowledge of Medicare and Supplemental Health Insurance Benefits, Health Services Research 20:633-657, 1981. 77. Minnesota Task Force on the Needs of Persons 78 79, 80. 81. 82. 83. 84. 85. 86. 87. 88. With Brain Impairment, Final Report, submitted to the Commissioner of the Department of Human Services, State of Minnesota, December 1985. Mortimer, J. A., Epidemiology of Dementia International Comparisons, Epidemiology and Aging, G. Maddox and J. Brody (eds.) (New York: Springer, 1986). Mortimer, J. A., and Hutton, J.T., Epidemiology and Etiology of Alzheimers Disease, Senile Dementia of the Alzheimer Type, J.T. Hutton and A.D. Kenny (eds.) (New York: A.R. Liss 1985). Mulley, G .P., Differential Diagnosis of Dementia, British Medical Journal 292:1416-1418, 1986. OShaughnessy, C., Survey of Agencies Performing Health Services Research on Long-Term Care of Patients with Dementia, Congressional Research Service, Library of Congress, U.S. Congress, April 1986. Ouslander, J .G., and Kane, R. L., The Costs of Urinary Incontinence in Nursing Homes, Medical Care 22:69-79, 1984. Petty, D., The Family Survival Project, contract report prepared for the Office of Technology Assessment, U.S. Congress, 1986. Powell, L. S., and Courtice, K., Alzheimer's Disease: A Guide for Families (Reading, MA: AddisonWesley, 1983). Price, D. L., Basic Neuroscience and Disorders Causing Dementia, contract report prepared for the Office of Technology Assessment, U.S. Congress, 1986. Private/Public Sector Advisory Committee on Catastrophic Illness, Report to the Secretary of Health and Human Services, Aug. 19, 1986. Prospective Payment Assessment Commission, personal communication, Apr. 17 and 18, 1986. Radebaugh, T. S., Hooper, F.J., and Gruenberg, E. M., The Social Breakdown Syndrome in a Community Residing Elderly Population, British Journal of Psychiatry, in press. 89. Raschko, R,, Systems Integration at the Program Level: Aging and Mental Health, Spokane Community Mental Health Center, Spokane, WA, in press. 90. Rees, K.C., Legislative Advocacy and Alzheimers Disease: The California Experience, presented at the National Conference on Alzheimers Disease and Dementia, Detroit, MI, Apr. 10-12, 1986. 91. Reifier, B. V., and Orr, N., Alzheimer's Disease and the Nursing Home: A Staff Training Manual, (Tacoma, WA: Westprint Division of Hillhaven Corp., 1985). 92. Rhode Island Legislative Commission, Dementias Related to Aging, Providence, RI, May 1, 1984. 93. Risse, S. C., and Barnes, R., Pharmacologic Treatment of Agitation Associated With Dementia, Journal of the American Geriatrics Society 34:368376, 1986. 94. Ron, M. A., Toone, B. K., Garralda, M. E,, et al., 95 96 Diagnostic Accuracy in Presenile Dementia, British Journal of Psychiatry 134:161-168, 1979. Rovner, B.W., Kafonek, S., Filipp, L., et al., Prevalence of Mental Illness in a Community Nursing Home, American Journal of Psychiatry, in press. Rubenstein, L.Z., Josephson, K. R., Wieland, G. D., et al., Differential Prognosis and Utilization Patterns Among Clinical Subgroups of Hospitalized Geriatric Patients, Health Services Research 20:881-895, 1986. 97. Sayetta, R. B., Rates of Senile DementiaAlzheimers Type in the Baltimore Longitudinal Study, Journal of Chronic Diseases 39:271-286, 1986. 98. Schneider, D., Desmond, M., Foley, W., et al., 99. 100, 101, 102, 103. 104. 105. 106. Long-Term Care Case Mix Reimbursement Using RUG-II (Albany, NY: New York State Department of Health, December 1985). Shaughnessy, P. W., Long-Term Care Research and Public Policy, Health Services Research 20:489-499, 1985. Stone, R., Cafferata, G.L., and Sangl, J., Caregivers of the Frail Elderly: A National Profile, National Center for Health Services Research and Health Care Technology Assessment, US. Department of Health and Human Services, 1986. Study Committee Report, 1985, Alzheimers Disease) Georgia Department of Human Resources, Office of Aging, December 1985. Sulvetta, M. B., and Holahan, J., Cost and CaseMix Differences Between Hospital-Based and Freestanding Nursing Homes, Health Care Financing Review 7:75-84, spring 1986. Texas Department of Health, Alzheimer's Disease Initiative: Nursing Home Study (Austin, TX, 1985). U.S. Congress, House Select Committee on Aging, Twentieth Anniversary of Medicare and Medicaid: Americans Still at Risk, Hearing Before the U.S. House of Representatives, 99th Congress, July 30, 1985, Comm. Pub. No. 99-538 (Washington, DC: U.S. Government Printing Office, 1986). U.S. Congress, Office of Technology Assessment, Technology and Aging in America, OTA-BA-264 (Washington, DC: U.S. Government Printing Office, 1985). U.S. Congress, General Accounting Office, Con-

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Ch. 1Dementia: Prospects and Policies l 55 straining National Health Care Expenditures: Achieving Quality Care at an Affordable Cost, No. HRD-85-105 (Washington, DC: U.S. General Accounting Office, 1985). 107. U.S. Congress, General Accounting Office, The Well-Being of Older People in Cleveland, Ohio, No. HRD-77-70 (Washington, DC: U.S. General Accounting Office, 1977). 108. U.S. Department of Health and Human Services, Alzheimers Disease, vol. 32, Gerontology Special Supplement, No. 1, February 1985, pp. 1-111. 109. U.S. Department of Health and Human Services, Report of the Secretary as Required by Section 16, Public Law 98-460, September 1985. 110. U.S. Department of Health and Human Services, Alzheimer's Disease: Report on Secretarys Task Force on Alzheimers Disease, DHHS Pub. No. ADM 84-1323, (Washington, DC: U.S. Government Printing Office, 1984). 111. U.S. Department of Health and Human Services, Health Care Financing Administration, LongTerm Care: Background and Future Directions, 1981. 112. U.S. Department of Health and Human Services, National Center for Health Statistics, Characteristics of Nursing Home Residents, Health Status, and Care Received: National Nursing Home Survey United States, May-December 1977, Vital Health Statistics Series 13, No. 51, DHHS Pub. No. (PHS) 81-1712, 1981. 113. U.S. Department of Health and Human Services, Task Force Report on Long-Term Care, Report of the Under Secretary, April 1981. 114. U.S. Department of Health and Human Services, Catastrophic Illness Expenses, Report to the President, November 1986. 115. U.S. Veterans Administration, Caring for the Older Veteran, (Washington, DC: U.S. Government Printing Office, 1984). 116. U.S. Veterans Administration, International Work Group, The Veterans Administration and Dementia, Recommendations for Patient Care, Research, and Training, Office of Geriatrics and Extended Care, Veterans Administration Central Office, Kellogg International Scholarship Program on Health and Aging, Institute of Gerontology of the University of Michigan, and Institute of Social Medicine, University of Copenhagen (Washington, DC: October 1985). 117. U.S. Veterans Administration, Office of Geriatrics and Extended Care, Department of Medicine and Surgery, Veterans Administration Central Office, Dementia: Guidelines for Diagnosis and Treatment (Washington, DC, 1986). 118. Vane) R., Natural Support Systems, Minority Groups, and the Late Life Dementias: Implications for Service Delivery, Research, and Policy, Clinical Aspects of Alzheimers Disease and Senile Dementia (Aging, vol. 15), N.E. Miller and G.D. Cohen (eds.) (New York: Raven Press, 1981). 119. Vierck, E., Health Services Research Related to Dementia, a report by the Subcommittee on Aging, U.S. Senate Committee on Labor and Human Resources, draft report, June 1986. 120. Weissert, W G., Seven Reasons Why It Is So Difficult to Make Community-Based Long-Term Care Cost-Effective, Health Services Research 20:423433, 1985. 121. Whitehouse, P. J., Alzheimers Disease, Current Therapy in Neurologic Disease, 1985-1986, R.T. Johnson (cd.) (Philadelphia, PA: B.C. Decker, 1985). 122. Winograd, C. H., and Jarvik, L. F., Physician Management of the Demented Patient, Journal of the American Geriatrics Society 34:295-308, 1986. 123. Yankelovich, Skelly, and White, Inc., Caregivers of Patients With Dementia, contract report prepared for the Office of Technology Assessment, U.S. Congress, 1986. 124. Zarit, S. H., and Anthony, C. R., Interventions With Dementia Patients and Their Families, The Dementias: Policy and Management, M.L.M. Gilhooly, S.H. Zarit, and J.E. Birren (eds.) (Englewood Cliffs, NJ: Prentice-Hall, 1986). 125. Zarit, S. H., Reever, K. E., and Back-Peterson, J., ( Relatives of the Impaired Elderly: Correlates of Feelings of Burden, The Gerontologist 20:649655, 1980.

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Chapter 2 Characteristics of Persons With Dementia

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CONTENTS Page Definition of Dementia . . . . . . . . . . . . 60 other Diagnostic Criteria . . . . . . . . . . . 61 Variation in Symptoms . . . . . . . . . . . 61 Stages of the Disease . . . . . . . . . . . ., 62 Theoretical Advantages of Staging or Measures of Severity . . . . 63 Staging Instruments . . . . . . ., . . . . . 63 Use of Assessment Tools for Staging . . . . ..., . . . 63 Problems in the Use of Scales and Stages . . . . . . . 63 Symptoms of Dementia . . . . . . . . . . . . 68 Cognitive/Neurological Symptoms . . . . . . . . . 68 Ability To Do Normal Daily Activities. . . . . . . . . 70 Behavioral or PsychiatricSymptoms . . . . . . . . 72 Excess Disability Brought About by outside Factors . . . . . 77 Conceptual Issues Raised by the Characteristics of Persons With Dementia . 79 Is Dementia a Disease or Normal Aging? . . . . . . . . 79 Are Persons Eligible for Services on the Basis of Age or Disability? . . 79 Is Dementia a Mental Disorder, an Organic Disease, or Something In-Between? . . . . . . . . . . . . 79 What Share of Funds Should Be Allocated to Research Into Patient Care? . 80 Chapter 2 References. . . . . . . . . . . . . 81 Tables Table No. Page 2-1. Brief Cognitive Rating Scale . . . . . ..., . . . . 64 2-2.The Global Deterioration Scale for Age-Associated Cognitive Decline and Alzheimers Disease. . . . . . . . . . . . 6.5 2-3. Clinical Dementia Rating Scale. . . . . . . . . . 66 2-4. Ability of Dementia Patients To Do Basic Tasks . . . . . . 71 2-5. Assessment of Dementia Patients Eating SkiIls ,..,., . . . . 71 2-6. Assessment of Dementia Patients Toilet Skills. .,., . . . . . 71 2-7. Frequency of Dementia Patients Engagement in Certain Behaviors . . 73 Boxes B OX NO. Page A.The Experience of the Victim . . . . . . . ., . . 59 B. Progression of Dementia. . . . . . . . . . . 67

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Chapter 2 Characteristics of Persons With Dementia* What happens to the mind when a dementing illness strikes? Families and professionals alike struggle to understand why persons with dementing illnesses act as they do, and what, if anything, can be done to modify the persons strange behaviors or support lost skills. The burden of caring for individuals with dementia arises as much out of the need to protect them from their own lack of judgment and to restrain them from dangerous behaviors as it does from providing personal or medical care (22). The difficult behaviors, poor judgment, profound memory loss, and changes in cognition as the diseases progress significantly affect both family caregivers and those working in formal support systems (see box A and chs. 4 and 7). l This chapter is a contract report by Nancy Mace, Consultant in Gerontolo~, Towson, MD. This chapter will describe persons with dementia: the abilities they are losing, those that remain, and the ways in which these changing impairments affect the care these individuals need. The chapter: l outlines the stages of decline of chronic dementing illnesses and discusses the usefulness of documenting stages in the illness; l describes the symptoms of dementia and the impairments individuals experience; l identifies the symptoms that are most read ily alleviated; and l considers the care needs of victims of dementia that arise from these symptoms. while some causes of dementia are treatable (see Ch, 3), only chronic and irreversible illnesses are discussed here. 59 63-218 0 87 3 QL : 3

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60 Losing a Milliion Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias Although most physicians and researchers agree among dementing diseases, and with patients on the definition of dementia, there is disagreethought to have the same disease. These variament over the stages of an individuals decline, tions, both in medical opinion and in knowledge on the causes of behaviors, and on the treatabilof the diseases, have a significant impact on policy. ity of symptoms. The course and symptoms vary DEFINITION OF DEMENTIA Several different methods are used to determine whether an individual has dementia. Clinicians increasingly use the criteria specified by the American Psychiatric Association in the third edition of its Diagnostic and Statistical Manual of Mental Disorders (DSM-III) (l). Many of the epidemiologic and clinical studies done since 1980 have also used these criteria. The DSM-III diagnostic classification provides a method for systematically grouping symptoms that affect mental function. A similar set of criteria was developed in 1983 in a joint effort between the National Institute of Neurological and Communicative Disorders and Stroke and the Alzheimers Disease and Related Disorders Association (ADRDA) (17,27). Based on these two sets of criteria, dementia is defined as: l a decline in intellectual function; l global cognitive impairment, that is, memory impairment and at least one of the following: impairment of abstract thinking; impairment of judgment; impairment of other complex capabilities such as language use, ability to perform complex physical tasks, ability to recognize objects or people, or to construct objects; and personality change; and l being in clear consciousness (i.e., awake and alert). The definition differentiates dementia from mental retardation, in which there is no decline from a previous level. Thus a person with exceptional intelligence might have dementia if his or her intellectual ability declined to average. Similarly, a mentally retarded person can suffer from dementia when his or her intellectual limitations worsen. That qualification requires that the individuals previous level of function be known. If no one can give a clear account of the persons past, the only way to determine if abilities are declining is to observe the individual over time. That necessity has implications for both epidemiology (7) and policy. If criteria for eligibility for services were to include documentation of change over time, individuals who require immediate assistance might be excluded. If, on the other hand, documentation of decline is not required, persons with lifelong impaired capacity might use limited services intended for persons with dementia. It is usually easy to document decline, based on the familys report. When someone has no close family, it is more difficult. The next part of the definition, global, means that more than one area of intellectual function is impaired. Thus a person suffering only a memory impairment (e.g., caused by Korsakoffs syndrome) or only an impairment in the ability to speak (e.g., caused by some strokes) is usually not said to be suffering from a dementia (26). In practice, these individuals are often similarly handicapped and limited in their ability to function independently. They will need services and resources like those for persons with a dementing illness. In addition, many people with Alzheimers disease suffer only memory loss at first. It is the expectation that other abilities will be lost that differentiates them from persons with pure amnesia. The definition also distinguishes dementia from other mental states such as delirium, sleep, coma, stupor, and intoxication. The third major qualification, in clear consciousness, means that in contrast to delirium, the person is mentally impaired even when awake and alert. Several criteria distinguish delirium from dementia. State of consciousness: Persons with delirium have fluctuating or clouded conscious-

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Ch. 2Characteristics of Persons With Dementia l 6 1 l l l l ness, while those with dementia areas attentive as they can be. Stability: With delirium, the individuals ability to pay attention and respond varies over short periods, only minutes or hours, while dementia is relatively stable in comparison. Duration: Delirium is usually short-lived, while dementia has a more prolonged course. Rate of onset: Delirium usually appears abruptly, over days or weeks, while dementia, except for some vascular dementia, usually develops insidiously. Cause: Delirium usually can be traced to a recent sourcehead trauma, drugs, fever, infectionwhile dementia may not be linked to another cause. These distinctions are usually easy to make in young persons, but the borders between dementia and delirium blur with age. Elderly people can remain delirious for prolonged periods and the cause can be obscure. Many of the physical insults that cause delirium in the young can produce symptoms that look very much like dementia in older people. The elderly delirious patient can exhibit a full spectrum of psychiatric symptoms including delusions, hallucinations, depression, excitement, agitation, fear, anger, and apathy. A cognitive examination reveals disorientation, memory impairment, problems in writing, and inability to sustain a conversation (9). Thus delirious persons can easily be misdiagnosed as having a dementing illness, and the underlying cause of the delirium may be left untreated. Elderly people are especially vulnerable to delirium caused by illness or reactions to medication. Some may have only a delirium; others may suffer from both a delirium and a dementia. Persons with dementing illnesses are prone to develop additional delirium when they develop any other illness (42). In such cases, the delirium may cause a further decline in the individuals cognitive abilities. Therefore, the presence of an underlying dementia cannot be determined until any concurrent delirium has disappeared (39). Thus, eligibility for services based on the presence of dementia requires a careful search to exclude delirium. Any assessment of need for services would be difficult to determine for elderly persons who are acutely ill and confused. That is a particularly significant problem when such persons have been hospitalized. In order to avoid delays, plans for a patients discharge are begun soon after admission, when the presence and severity of dementia maybe difficult to determine. Other Diagnostic Criteria Several criteria that have been used in defining dementia are omitted from the DSM-III definition. DSM-III does not include any statement regarding the course of the illness (i.e., chronic or acute) or prospects for treatment (i.e., reversible or irreversible). It makes no statement regarding the cause of the dementia (e.g., Alzheimers disease or stroke) (26). Nor does it require the presence of specific behaviors such as agitation or wandering. Its great advantage is that it allows the description of disabilities along several axes without using unproved assumptions about cause or classification to label an individual. The absence of such labels has policy implications. In the past, elderly persons with memory loss or changed behaviors were said to be suffering from (chronic organic brain syndrome -a label that consigned them to a hopeless category before their condition had been diagnosed, and that discouraged the search for treatable causes of the dementia. Although the most common disorders causing dementia Alzheimers disease and multi-infarct dementia-are not curable, that may not always be so. Therefore, a definition that includes irreversibility would be inappropriate. Excluding the cause of the dementia from the diagnosis also permits identification of an individuals characteristics and needs in the absence of a causal diagnosis. Behaviors such as wandering are not necessary for the diagnosis because they may disappear as the persons condition declines or when under treatment. Variation in Symptoms The specific cognitive functions that are lost and those that remain can vary from time to time and from person to person (17). These variations may be due to several factors: l The progression (stage) of the disease or the length of time the person has had the disease

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62 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias (18): Over time individuals gradually lose more and more cognitive ability. Because the speed at which these changes occur varies from person to person (from 1 to 20 years) (18), services need to be flexible if they are to meet changing impairments. (The limitations inherent in describing the course of the disease by stages are described later in this chapter.) The underlying disease causing the dementia (14): Some dementing illnesses affect gait, bladder control, or mood to a greater or lesser extent; other dementias affect reason, judgment, mathematical ability, and complex thought (26). These variations can affect the equitable distribution of resources. For example, eligibility criteria for Old Age Survivors Disability Insurance include evidence of deterioration of personal habits. One persons coherent speech and appearance of wellbeing may conceal very poor judgment and inability to hold a job, while anothers apathetic and disheveled appearance may make him or her appear much more impaired. Furthermore, Alzheimers disease and multi-infarct dementia can be difficult to distinguish, making the course of an individuals illness hard to predict. The presence of other illnesses or reactions to medication (18): As noted earlier, persons with dementia often experience a further impairment in their intellectual function when they also develop other illnesses or drug reactions. Even minor illness can temporarily cause worsened behavior or greater confusion (20). The idiosyncratic characteristics of the individual (19): One person with Alzheimers disease may be agitated and combative, while another may be amiable and easily managed. The causes of these differences are not understood. The difference affects the services l l needed and the individuals ability to use services, The uneven impact of the illness on different areas of intellect (19): The ill person will be able to do some things better than others. This seeming paradox of intellectual function often leads to misunderstandings of a persons abilities. Families often mistakenly believe that ability to do one task indicates an ability to do an apparently similar task. For example, one woman could load her elder daughters dishwasher but not the younger ones. The daughters attributed this to the mothers longstanding preference for the elder daughter, but an occupational therapist found that the elder daughters dishwasher was old, and the mother had learned to operate it before she became ill. The younger daughters dishwasher was new and the mother was unable to learn even the simple skill of opening it (19). The varied response of different symptoms to intervention: Symptoms vary in their responsiveness to treatment, regardless of whether the underlying disease is treatable. Angry outbursts or hallucinations maybe controlled or prevented, for example, but an increasing memory loss may not be stopped. Because of these variations, the ability and behavior of individuals with the same disease may differ widely, and the ability of one individual may vary through the day, or from week to week. Neu ropsychological tests are being designed that more accurately measure these varied disabilities and changes over time. However, the relationship between the test results and the persons actual ability to function in familiar surroundings has not been standardized. Although useful in research, such tests are not sufficient by themselves to determine eligibility for services (see ch. 8), STAGES OF THE DISEASE The most common cause of dementia, Alzheimers disease, is a chronic, progressive disorder. Its worsening course has been described in terms of stages of increasing severity. The course of the disease differs from that of multi-infarct dementia or other diseases, but the problems in accurately diagnosing Alzheimers disease and multi-infarct dementia make it difficult to develop ways to de-

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Ch. 2Characteristics of Persons VVith Dementia l 63 scribe these stages. This section will discuss the concept of identifying stages only for Alzheimers disease. Theoretical Advantages of Staging or Measures of Severity The successful definition of a series of discrete and reliable stages describing Alzheimers disease would have several advantages. Staging would enable a family to plan ahead for an individuals needs. It would enable researchers to compare different individuals at similar points in their illnesses. It would allow researchers to measure the effect of experimental interventions in postponing the next stage. Researchers could test the effects of experimental drugs by comparing treated persons with untreated persons at the same stage. Staging would also allow planning for appropriate levels of service needed as individuals decline. Average lengths of time in each stage would allow planners to estimate costs of care. The stage of the individuals illness could be used as a criterion of eligibility for specific services, Staging Instruments The effort to develop accurate measures of stages has only begun. One of the classic descriptions of Alzheimers disease, which has been used by many clinicians, has three stages. The first stage is marked by the onset of memory loss. The second stage is marked by problems in language, motor ability, and recognition of objects. The third or terminal stage shows profound dementia with loss of continence, loss of the ability to walk, and nearly complete loss of language (38). Several more detailed theories of stages have been developed recently in an effort to characterize more specifically the predictable changes during the course of the disease. Although the validity of scales remains controversial, two examples are included here. Table 2-1 shows the Brief Cognitive Rating Scale (32), which describes seven stages of the patients illness on 10 axes: concentration, recent memory, past memory, orientation, functioning and selfcare, speech, motor functioning, mood and behavior, practice of an art or skill, and calculation ability. This scale has the advantage of describing declines in several areas of function. Also it is more detailed and specific than the three-stage model. Table 2-2 shows the Global Deterioration Scale, which defines seven stages of deterioration, ranging from no cognitive decline to very severe cognitive decline, and their associated clinical phases and characteristics. The Clinical Dementia Rating Scale (15) (table 2-3) uses five stages and six axes and is designed to measure the severity of major areas of cognition. Use of Assessment Tools for Staging Tests intended to diagnose the presence of dementia, to assess those areas of cognition that are more impaired than others, or to track the decline of individuals can be used to describe stages. These scales may rate persons abilities to perform familiar tasks (3), or several general kinds of functioning (10). Researchers have examined many other specific characteristics of intellect in search of those that show a consistent and reliable pattern of change in dementia (18). Problems in the Use of Scales and Stages Researchers do not agree about the validity of the scales. While some report consistent similarities in persons with dementia, others are struck by the degree of variability. Although one researcher states, present investigations indicate that seven stages of progressive deterioration in normal aging and Alzheimers disease can readily be described (33), another maintains that: although the patient with Alzheimers disease or a related disorder undergoes a series of behavioral changes and losses, empirical data are still not available to describe the course of the illness. Cognitive skills and competency in life tasks appear to deteriorate at different rates in different people, but the losses are progressive until the individual ultimately dies (4). Alzheimers disease is a gradually progressive disorder with no noticeable hallmarks that mark a persons passage from one stage to the next. Observers note that some individuals remain un-

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64 Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias Table 2-1.Brief Cognitive Rating Scale Part 1 Axis 1: Concentration 1. 2. 3. 4. 5. 6. 7. No objective or subjective evidence of deficit in concentration. Subjective decrement in concentration ability. Minor signs of poor concentration (e.g., subtraction of serials 7s from 100). Definite concentration deficit for persons of their background (e.g., marked deficit on serial 7s; frequent deficit in subtraction of serial 4s from 40). Marked concentration deficit (e.g., giving months backwards or serials 2s from 20). Forgets the concentration task. Frequently begins to count forward when asked to count backwards from 10 by 1s. Marked difficulty counting forward to 10 by 1s. Axis //: Recent memory 1. No objective or subjective evidence of deficit in recent memory. 2. Subjective impairment only (e.g., forgetting names more than formerly). 3. Deficit in recall of specific events evident upon detailed questioning. No deficit in the recall of major recent events. 4. Cannot recall major events of previous weekend or week. Scanty knowledge (not detailed) of current events, favorite TV shows, etc. 5. Unsure of weather; may not know current president or current address. 6. Occasional knowledge of some recent events. Little or no idea of current address. 7. No knowledge of recent events. Axis Ill: Past memory 1. No subjective or objective impairment in past memory. 2. Subjective impairment only, can recall two or more primary school teachers. 3. Some gaps in past memory upon detailed questioning. Able to recall at least one childhood teacher and/or childhood friend. 4. Clear-cut deficit, the spouse recalls more of the patients past than the patient. Cannot recall childhood friends and/or teachers but knows the names of schools attended. Confuses chronology in reciting personal history. 5. Major past events sometimes not recalled (e.g., names of schools attended). 6. Some residual memory of past (e.g., may recall country of birth or former occupation; may or may not recall mothers name; may or may not recall fathers name). 7. No memory of past (cannot recall country, State, or town of origin; cannot recall names of parents, etc.). Axis IV: Orientation 1. No deficit in memory for time, place, identity of self or others. 2. Subjective impairment only, knows time to nearest hour, location. 3. Any mistake in time of 2 hours or more; day of the week of 1 day or more; date of 3 days or more. 4. Mistakes in month of 10 days or more; or year of 1 month or more. 5. Unsure of month and/or year and/or season; unsure of locale. 6. No idea of date. Identifies spouse but may not recall name. Knows own name. 7. Cannot identify spouse. May be unsure of personal identity. Axis V: Functioning and self-care 1. No difficulty, either subjectively or objectively. 2. Complains of forgetting location of objects. Subjective work difficulties. 3. Decreased job functioning evident to co-workers, difficulty in traveling to new locations. 4. Decreased ability to perform complex tasks (e.g., planning dinner for guests, handling finances, marketing, etc.). 5. Requires assistance in choosing proper clothing. 6. Requires assistance in feeding, and/or toileting, and/or bathing, and/or ambulating. 7. Requires constant assistance in all activities of daily life. SOURCE: B. Reisberg, S. Ferris, and M.J. deLeon, Senile Dementia of the Alzheimers Type: Diagnostic and Differential Diagnostic Features With Special Reference to Functional Assessment Staging, FYoceed/ngs, Second International Tropon-Bayer Symposium, 1984.

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Ch. 2Characteristics of Persons With Dementia 6 5 Table 2-2.The Global Deterioration Scale (GDS) for Age-Associated Cognitive Decline and Alzheimers Disease GDS stage Clinical phase Clinical characteristic 1 Normal No cognitive decline 2 Forgetfulness Very mild cognitive decline 3 Early confusional Mild cognitive decline 4 Late confusional Moderate cognitive decline 5 Moderately severe decline Early dementia 6 Middle dementia Severe cognitive decline 7 Late dementia Very severe cognitive decline No subjective complaints of memory deficit. No memory deficit evident on clinical interview. Subjective complaints of memory deficit, most frequently in following areas: a) forgetting where one has placed familiar objects; b) forgetting names one formerly knew well. No objective evidence of memory deficit on clinical interview. No objective deficits in employment or social situations. Appropriate concern with respect to symptomatology. Earliest clear-cut deficits. Manifestations in more than one of the following areas: a) patient may have gotten lost when traveling to an unfamiliar location; b) co-workers become aware of patients relatively poor performance; c) word and name finding deficits become evident to intimates; d) patient may read a passage or a book and retain relatively little material; e) patient may demonstrate decreased facility in remembering names upon introduction to new people; f) patient may have lost or misplaced an object of value; g) concentration deficit may be evident on clinical testing. Objective evidence of memory deficit obtained only with an intensive interview conducted by a trained geriatric psychiatrist. Decreased performance in demanding employment and social settings. Denial begins to become manifest in patient. Mild to moderate anxiety accompanies symptoms. Clear-cut deficit on careful clinical interview. Deficits manifest in following areas: a) decreased knowledge of current and recent events; b) may exhibit some deficit in memory of personal history; c) concentration deficit elicited on serial subtractions; d) decreased ability to travel, handle finances, etc. Frequently no deficit in following areas: a) orientation to time and person; b) recognition of familiar persons and faces; c) ability to travel to familiar areas. Inability to perform complex tasks. Denial is dominant defense mechanism. Flattening of affect and withdrawal from challenging situations occur. Patients can no longer survive without some assistance. Patients are unable during interview to recall a major relevant aspect of their current lives: e.g., the names of close members of their family (such as grandchildren), the name of the high school or college from which they graduated. Frequently some disorientation to time (date, day of week, season, etc.) or to place. An educated person may have difficulty counting back from 40 by 4s or from 20 by 2s. Persons at this stage retain knowledge of many major facts regarding themselves and others. They invariably know their own names and generally know their spouses and childrens names. They require no assistance with toileting or eating, but may have some difficulty choosing the proper clothing to wear. May occasionally forget the name of the spouse upon whom they are entirely dependent for survival. Will be largely unaware of all recent events and experiences in their lives. Retain some knowledge of their past lives, but this is very sketchy. Generally unaware of their surroundings, the year, the season, etc. May have difficulty counting from 10, both backward and sometimes forward. Will require some assistance with activities of daily living, e.g., may become incontinent, will require travel assistance, but occasionally will display ability to travel to familiar locations. Diurnal rhythm frequently disturbed. Almost always recall their own name. Frequently continue to be able to distinguish familiar from unfamiliar persons in their environment. Personality and emotional changes occur. These are quite variable and include: a) delusional behavior, e.g., patients may accuse their spouse of being an impostor, may talk to imaginary figures in the environment, or to their own reflection in the mirror; b) obsessive symptoms, e.g., person may continually repeat simple cleaning activities; c) anxiety symptoms, agitation, and even previously nonexistent violent behavior may occur; d) cognitive abulia, i.e., loss of willpower because an individual cannot carry a thought long enough to determine a purposeful course of action. All verbal abilities are lost. Frequently there is no speech at all only grunting. incontinent of urine; requires assistance toileting and feeding. Lose basic psychomotor skills, e.g., ability to walk. The brain appears to no longer be able to tell the body what to do. Generalized and cortical neurologic sign and symptoms are frequently present. SOURCE: B. Reisberg, Clinical Presentation, Diagnosis, and Symptomatology of Age-Associated Cognitive Decline and Alzheimers Disease, Alzheirners Disease: The Standard Reference (New York: Free Press, 1983 ), pp. 173-187 changed for long periods while others follow an fulness of staging instruments. Further, as noted, atypical course (17). It can be difficult to clinically there are many reasons why persons with Alzdistinguish this disease from other dementing illheimers disease can show worsened symptoms: nesses with slightly different courses; indeed, the other illnesses, fatigue, delirium, or an inappropri term Alzheimers disease may actually include ate environment. The stage of a persons illness several diseases, each with a slightly different patcannot be determined until these factors have tern (see ch. 3). All of these factors limit the usebeen ruled out.

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Table 2-3.Clinical Dementia Rating (CDR) Scale Healthy Questionable dementia Mild dementia Moderate dementia Severe dementia CDR O COR 0.5 CDR 1 CDR 2 CDR 3 Memory No memory loss or slight Mild consistent forgetfulness; Moderate memory loss, more Severe memory loss; only highly Severe memory loss; only inconsistent forgetfulness partial recollection of events; marked for recent events; defect learned material retained; new fragments remain benign forgetfulness interferes with everyday activities material rapidly lost Orientation Fully oriented Some difficulty with time Usually disoriented in time, often Orientation to person only relationships; oriented for place to place and person at examination but may have geographic disorientation Judgment and problem-solving Solves everyday problems well; Only doubtful impairment in Moderate difficulty in handling Severely impaired in handling Unable to make judgments or judgment good in relation to solving problems, similarities, complex problems; social problems, similarities, differences; solve problems past performance differences judgment usually maintained social judgment usually impaired Community affairs Independent function at usual Only doubtful or mild impairment Unable to function independently No pretense of independent function outside home level in job, shopping, business in these activities at these activities though may Appears well enough to be taken Appears too ill to be taken to and financial affairs, volunteer still be engaged in some; may to functions outside a family functions outside a family home and social groups still appear normal to casual home inspection Home and hobbies Life at home, hobbies, intellectual Life at home, hobbies, intellectual Mild but definite impairment of Only simple chores presemed; No significant function in home interests well maintained interests slightly impaired function at home; more difficult very restricted interests, poorly outside of own room chores abandoned; more sustained complicated hobbies and interests abandoned Personal care Fully capable of self-care Needs prompting Requires assistance in dressing, Requires much help with hygiene, keeping of personal personal care; often incontinent effects SOURCE C P Hughes, L Berg, W L Oonzger, et al., New Clinical Scale for the Staging of Dementia, Brfllsh Journal of Psychutry 140 -572, 1982

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Ch. 2Characteristics of Persons With Dementia 67 Concepts of staging can be used for different purposes: research, family education, understanding an individual patient, or measuring disability to enable eligibility for services. Scales used for eligibility must correctly screen out those who should not be eligible while not excluding some whose symptoms are atypical. They should be replicable and they should produce the same results as other reliable tests. They should produce accurate scores regardless of the sociocultural background of the person being tested; they should detect dementia early in the illness and give accurate scores of disability through the full course of the illness. They should be easy to administer and not upsetting to the individual. None of the scales or theories of staging yet meets these criteria.

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68 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias SYMPTOMS persons suffering from a dementing illness lose cognitive abilities, as manifested in changes in behavior and losses of function (35). These symptoms can be loosely grouped into four categories: cognitive or neurological symptoms; functional symptoms or impairment of the ability to carry out normal daily activities; behavioral or (psychiatric symptoms; and the excess disabilities brought about by outside factors (18). Categorizing symptoms is somewhat arbitrary: Many could as easily fit into one group as into another. Nevertheless, grouping symptoms is useful in describing the kind of care these individuals need. An understanding of which of the individuals cognitive functions have been spared or impaired can be used by the clinician to explain specific behaviors to the family and is useful in devising ways to assist the person with dementia (30,&I). As noted, social skills, judgment, ability to do mathematics, ability to remember things, or ability to pay attention may all vary independently. One person may still seem gracious and friendly but be unable to remember the context of a conversation from moment to moment. Another may be able to remember how to dismantle a sink but be unable to realize that the sink being taken apart is in someone elses room, The loss of intellectual function, often combined with the false appearance of normal capability, confuses family members and professional caregivers. Demented individuals may still be able to walk or drive but may get lost or have accidents. That is one way in which these individuals differ from other frail, elderly, or ill persons. They may have no awareness of their impairments and therefore resist assistance. They may argue with caregivers or accuse them of abuse (22). Cognitive/Neurological Symptoms In the early part of the illness, person with dementias typically experience memory loss and aphasia (language problems). That is often followed by apraxia (inability to carry out purposeful movement in the absence of motor or sensory impairment), agnosia (failure to recognize things or people), loss of the ability to learn, and disorienOF DEMENTIA tation (41). Other possible neurological symptoms include seizures, shocklike contractions of a group of muscles, changes in reflexes, tremors, and failure of muscle coordination. There is considerable overlap between some symptoms. Symptoms are thought to correlate with specific areas of brain damage or systems of neurotransmitters (26). In disorders for which medicine now has no cure, such as Alzheimers disease, these symptoms are quite stable within a given individual at a given time, despite efforts to modify them. That is, when other factors (delirium, nonsupportive environment, unnecessary stress) are removed, most efforts to bring about improvement in these functions have been unsuccessful (29). Cognitive symptoms can be measured with neuropsychological tests and some can be reliably replicated in the same person. Therefore they are frequently selected as markers to measure change brought about by experimental therapy. There is more general agreement about the sequence or stages in which these cognitive symptoms appear in Alzheimers disease than there is about other symptoms. Disorders affecting rapid and complex hand movements also may begin early in Alzheimers disease. Cognitive impairments profoundly affect the way in which a person perceives his or her world and therefore significantly affect behavior. Memory Impairment The hallmark of dementia is impairment of memory, which differs from the normal forgetfulness of healthy individuals, In dementia, memory of important information such as the names of close family members or the way to get home from a familiar place may be lost. At the beginning of the illness it can be difficult to distinguish between normal forgetfulness and the first signs of a dementing illness. That can cause anxiety among elderly persons who fear they are developing dementia. However, as the disease progresses, the severity of the memory impairment becomes evident, and is clearly different from absentmindedness.

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Ch. 2Characteristics of Persons With Dementia l 6 9 There are several different forms of memory: immediate (remembering for a few seconds), short-term (remembering for a few minutes), and long-term (remembering material learned from year to year). Neuropsychological testing can delineate the types of memory that are spared and impaired in a given person. Most persons with Alzheimers disease have impaired short-term memory (35), but many retain some long-term memory. It is difficult to imagine life without a short-term memory. One could not learn from experience. Following a conversation would become impossible. Television would become a meaningless jumble, Individuals who have lost short-term memory cannot remember the question just asked or the answer just given, or even that they have forgotten, These individuals often become fearful and anxious and cling to a trusted caregiver. They may ask the same question many times or fail to do something because they cannot remember what they were asked to do. Such problems often begin before a person looks or acts ill, so that others are not sensitive to the disability. Aphasia Aphasia is impairment in the use of language. In some persons, it is the first symptom of dementia; it eventually occurs in persons with Alzheimers disease (25). Expressive aphasia is an impairment in the ability to use language, speak, or write, while receptive aphasia is an impairment in the ability to understand spoken or written language. Unlike persons who are deaf, persons whose brains cannot process language cannot use symbols, pictures, or sign language. Aphasias are further classified by precise types of language impairment, such as the loss of the ability to name items, to put together sentences, to understand and act on what is heard, or to read or write. A person may experience quite selective losses of language. For example, an individual may be able to read aloud a note on the refrigerator to take your pills at noon, but be unable to carry out those instructions. Such highly specific impairments frustrate caregivers who reason that a person who can read ought to be able to act on instructions, or that a person who can hold reasonable social conversation ought to be able to remember a spouses name. But reading and comprehending instructions, participating in casual conversation, and recalling nouns are all different skills, and one can be lost before another. As dementia progresses, the person loses more language skills. Eventually, these individuals become nearly mute and it is no longer possible to differentiate types of language loss. Loss of communication often means that a person cannot ask for help when his or her memory has failed, and caregivers must then guess at needs. As the disease progresses, individuals become unable to tell caregivers when they are in pain, cold, or hungry. Apraxia Apraxia is the inability to carry out purposeful movement or motor actsbuttoning buttons, walking, dressing, eating a meal, or maintaining a sitting positionin the absence of motor or sensory impairment. Unlike the person who is paralyzed or injured, the person with apraxia has forgotten a skill. In Alzheimers disease, apraxia is progressive, beginning with a slight clumsiness and progressing to a dramatic lack of coordination, frequent falls, or the loss of the ability to walk. At first a person may have difficulty with clothing fasteners, whereas later the problem may be getting feet into trousers. Eventually, the person will be unable to participate at all in getting dressed. Although someone who has lost a hand in an accident can learn to use a prosthesis, and a person who has suffered a paralyzing spinal cord injury may learn to use crutches, individuals with dementia have lost the ability to remember and learn. Therefore, they may be unable to learn to use a walker or other assistive device, The methods of helping a person with a dementia to compensate for a disability are thus different from those used to assist a physically handicapped person. Yet the persons disability is as real as an amputees (24). Research may lead to the development of devices persons with dementia can use. Agnosia Agnosia is a disorder of perceptionthat is, the loss of the ability to comprehend the meaning or

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70 Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias recognize the importance of various types of sensory stimulation. That loss is different from the loss of memory, and might be described as an inability to use sensory information to recognize something. Individuals with agnosia may run into the mantlepiece because they do not recognize it as protruding before them. They may urinate in the wastebasket or put their dentures in the refrigerator because they do not correctly recognize the function of the wastebasket or refrigerator. Some individuals with agnosia insist that the spouse who is caring for them is not their spouse. Such a person may agree that the caregiver looks just like the spouse, but will insist that this caregiver is an imposter. A woman may cease to recognize a mirror image and begin to talk to the woman in the bathroom In some cases, she may regard the woman in the bathroom as a rival or intruder and act on this belief. Such impairments can be terribly distressing to family members, and the peculiarly circumscribed nature of some agnosias can make it difficult for family members to accept agnosia as a symptom of neurological damage (22). Persons with agnosia maybe unable to put together the various elements of a situation or object. In neurological examination, a person may be asked to copy a simple diagram but be unable to reproduce more than a section of it. At home that individual may be unable to set the table because he or she cannot think of all the elements china, cloth, and silverwareat one time. The individual may be able to pay attention to only two of four people in a room, and appear to ignore the others. Impaired Ability To Learn New Material Persons with a dementia usually experience a profound impairment in the ability to learn. They may be unable to learn a list of numbers in a test situation or unable to learn information as important as the location of the bathroom in a new residence. (That inability is closely related to other impairments such as loss of short-term memory.) Someone suffering from a dementia may superficially appear capable in other areas of intellectual function, but at the same time may be unable to learn even basic new material. That impairment can be disabling to the person who must move to a new residence or who is expected to learn a new, although less difficult, job skill. Some victims of dementia have been disqualified for payments under Social Security Disability Insurance (OASDI) because they are assumed to be able to work at less demanding jobs (6). However, not only are these individuals unable to learn simple new skills, but they cannot even learn that they are not doing their old job. Thus a former engineer whose intelligence score indicates an ability to work as a janitor may be unable to learn where the brooms are kept but insist that he or she is still an engineer. At the same time, persons with Alzheimers disease have not lost all ability to learn. Especially early in the disease, some individuals have learned compensatory techniques or ways to signal the caregiver, Although these are eventually lost, research to clarify the circumstances under which such technique? can be learned would greatly assist care providers. Disorientation Disorientation is the lack of correct knowledge of person, place, or timewhere a person is, who the people around you are, or what time of day, day of the week, or month it is. Persons with dementia develop these limitations from disorientation gradually. Some may not be disoriented, especially if the person is in a familiar setting or in the early stages of illness. Ability To Do Normal Daily Activities Persons with dementing illnesses gradually lose the ability to do the tasks of normal daily living. These skills include ones known as the activities of daily living (ADLs), which include basic skills such as dressing or eating, and those known as instrumental activities of daily living (IADLs) such as answering the telephone or making change. (For a full discussion of ADLs and IADLs, see ch. 8.) Checklists provide a score that describes the extent of the persons dependence or independence. Tables 2-4, 2-5, and 2-6 show the percentage of respondents in a survey, done for OTA, of caregivers who reported that persons with dementia

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Ch. 2Characteristics of Persons With Dementia 71 Table 2-4.-Ability of Dementia Patient To Do Basic Tasks Percent of total respondents Task Very well Somewhat Not at all No answer Walk without assistance. . . . 35 26 35 5 Eat without assistance . . . . 30 32 34 5 Dress without assistance . . . 14 28 52 5 Perform simple household tasks, such as setting the table or simple home repairs. . . . . 6 19 69 5 Cope with small sums of money. . . 5 15 73 6 NOTE: This table is percentage horizontally. Also totals may not add because of rounding. SOURCE: Yankelovlch, Skelly, & White, Inc., Caregivers of Patients With Dementia, contract report prepared for the Office of Technology Assessment, 19S6 Table 2.5.Assessment of Dementia Patients Eating Skills Percentage of total Eating skills respondents Eats cleanly, with proper utensils . . 36 Eats messily . . . . . . 23 Only eats simple solids, like crackers, by self. ... . . . . . . 6 Has to be fed by others . . . . 28 Is tube fed . . . . . . . 4 No answer . . . . . . . 4 SOURCE: Yankelovich, Skelly, & White, Inc., Caregivers of Patients With Dementia, contract report prepared for the Office of Technology Assessment, 19s6. Table 2-6.Assessment of Dementia Patients Toilet Skills Percentage of total Toilet skills respondents Independent/fully functional. . . . 23 Has occasional accidents/needs some help or reminder . . . . . 25 Has frequent wet beds or accidents. . 12 Is doubly incontinent (has bowel and urine accidents) . . . . . 36 No answer ... . . . . . . 4 SOURCE: Yankelovich, Skelly, & White, Inc., Caregivers of Patients With Dementia, contract report prepared for the Office of Technology Assessment, 19s6. had impairments in ADLs and IADLs. l That survey encompassed caregivers of persons with dementia in all phases of their illness. Table 2-4 shows IThe Yankelovich, Skelly, & White data in this chapter and in ch. 4 differ by a few percentage points from the figures cited elsewhere in this assessment. This is because the Yankelovich report calculated the percents of people answering each question exclusive of the nonresponders. In these two chapters, where the bulk of this assessment is reported, those who completed a questionnaire but did not answer a specific question are shown as a separate column. There are no significant differences between the two sets of data. that persons with dementia are not uniformly impairedskills are lost at different times throughout the illness. More can walk independently than can eat or dress without help; few can do household tasks or cope with money. The ability to handle money or do household tasks unassisted is usually lost early in the course of the disease: the ability to walk is lost late. It is also clear that the majority of these people are severely impaired in vital skills. Other studies report comparable levels of impairments (6,11). The ability to perform various tasks of daily living depends on the severity of cognitive impairments. The ability to brush teeth, for example, is based on the interaction of the ability to remember, to recognize the toothbrush, to perform the motor action, and so forth. An individuals loss of a skill may be partial, and he or she may be able to get dressed but not to select the clothing, or be able to eat independently only if served finger foods. Persons suffering from nondementing illnesses may also lose these same abilities, although for different reasons. Therefore, the degree or type of impairment does not indicate a specific disease, and the treatment intervention varies with the cause of the condition. Scores on measures of IADLs and ADLs have been found to be more reliable than diagnoses for predicting the amount of care a person will need in a nursing home (8). In the absence of a diagnosis, however, the use of ADLs to measure disability can obscure an individuals potential for rehabilitation. The type of assistance an individual will need depends on the cause of the impairment: a blind person may need to be told where

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72 Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias food is; a paraplegic may need a prosthesis; a person with dementia may need to have his or her food cut up, be given reminders, or be given fewer foods at one time to reduce confusion. Although the ability of most persons with dementia to function independently will inevitably decline until the person becomes totally dependent on others, the extent of an individuals ADL handicap sometimes can be reduced, and total dependency postponed. Disability can be reduced in supportive situations and worsened in unsupportive settings (see ch. 7). Continence illustrates the interlocking issues of decline in ADLs and the potential for improvement. Incontinence may be embarrassing for the individual and upsetting to the caregiver. Some authorities report that it is one of the precipitant for nursing home placement (40). But some report that uncontrolled incontinence is unnecessary in most cases. Problems of incontinence vary from complete loss of bladder or bowel control to occasional leaking. Incontinence has multiple causes, some of which are reversible. The need for diapers or catheters can sometimes be avoided or postponed with proper treatment of the underlying problem (42). The true incidence of failure to treat incontinence is unknown. Clinicians report cases in which reversible causes of incontinence have been incorrectly ascribed to the dementing disorder, and their susceptibility to treatment overlooked (21). In addition, individualized schedules, reminders, and assistance can maintain continence even in severely demented persons (42). Thus an individuals ADL score for incontinence may depend on the aggressiveness of treatment and the willingness of caregivers to assist. Since an individual may be continent in one setting and incontinent in another, the measure of his or her independence in ADLs may reflect both the setting and the individuals intellectual ability. Behavioral or (psychiatric) Symptoms Behavioral or psychiatric symptoms include angry outbursts, depression, violence, apathy, stubbornness, resistance to care, suspicion and accusations, wandering, incessant repeating of the same question, being awake and active at night, use of obscene or abusive language, talking to deceased relatives, hallucinations, delusions, rummaging through other persons rooms, stealing, getting lost, urinating in unsuitable places, hiding things, refusing to give up activities that can no longer be performed safely, wearing clothing inside out or in the wrong order, refusing to change clothing or to bathethe list can go on and on. The presence or absence of these symptoms by themselves is not necessarily evidence of dementia or any specific dementing illness. Similar behaviors can be seen in persons suffering from a variety of organic and psychiatric disorders, as well as in persons not suffering from any mental illness. It is important, however, to note that the treatment of choice varies with the cause of the problem. Techniques appropriate for treating depression or schizophrenia may or may not help persons with dementia. Also, a person suffering from a dementia may have none of these behavioral disturbances, or the disturbances may be present for only part of the illness (e.g., accusations decline as language is lost; wandering declines as ambulation is lost). Table 2-7 shows the percentage of caregivers in the OTA study who reported patient behavior problems. Other surveys report even higher rates of disturbed behavior (6,11,31). Variations between the studies can be accounted for in part by differences in the number of persons who were too ill to engage in the behaviors. In a resurvey of one of these populations 2 years later, researchers found a significant decline in disturbed behaviors, which they reported as due at least in part to the subjects continued decline (23). The experience of ADRDA also provides compelling evidence of the prevalence of these behaviors these problems are frequently discussed in the associations (how-to books and newsletters. From this evidence it can probably be concluded that disturbed behaviors occur for part of the illness in a majority of victims. Aberrant behaviors can be extremely distressing both for the sufferer and for caregivers. Families and service providers alike report that it is often these behavior problems, rather than the cognitive symptoms or the need for nursing or

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Ch. 2Characteristics of Persons With Dementia 73 Table 2-7.Frequency of Dementia Patients Engagement in Certain Behaviors Percentage of total respondents Dont know/ Very frequently Occasionally Rarely/never no answer How frequent/y does patient: Have periods of restlessness and agitation? . 39 33 10 18 Become listless and apathetic? . . . 32 29 14 26 Get in a depressed mood? . . . . 27 32 12 29 Wander away from home unless watched? . 29 24 36 Have inappropriate angry outbursts?. . . 19 32 30 19 Engage in crying episodes? . . . . 13 26 38 23 Engage in actions (hit, pinch, throw things) that physically hurt people? . . . . 9 17 53 22 aRe~POnd~ntS who are not the primary caregiver may not know the frequency of behavior problems. NOTE: This table is percentage horizontally. Also totals may not add because of rounding. SOURCE: Yankelovich, Skelly, & White, Inc., Caregivers of Patients With Dementia, contract report prepared for the Office of Technology Assessment, 19S6. personal care, that prove most distressing (40). Recent findings, however, indicate that these behaviors may be more responsive to treatment than previously assumed, and that they can be reduced even in the absence of significant change in cognitive impairment (see chs, 4 and 7). The division between behavioral and cognitive symptoms is arbitrary. A person suffering from damage to nerve cells or changes in brain chemistry can be expected to exhibit behavior that results from the neurological illness. It can also be reasoned that persons who cannot communicate their needs or thoughts, who cannot get dressed, or who do not know where they are or who is caring for them might experience depression, fear, anxiety, or anger. Thus these symptoms are not so much psychiatric as they are the clear result of the neurological illness. They maybe due both to brain damage and to an understandable reaction to the loss of mental abilities caused by that damage. Little is known about the relation of many behavorial symptoms to specific locations in the brain. Researchers disagree over whether a given behavior is primarily neurological, is a pyschological response to the neurological symptoms, or was a characteristic of an individuals personality before the onset of the dementing illness. As scientists understanding grows about the relationship of these symptoms to the underlying neurological disorder, so will the understanding of the broader relationship of brain to behavior, Fortunately, many behavioral symptoms of dementia are more responsive to currently available methods of treatment and intervention than the cognitive symptoms are (30). When the symptoms are not treated, the individual can be more impaired in functional ability than necessary. Medications are often the treatment of choice; however, they are easily overused or misused. The pharmacotherapy of aggressive or agitated behaviors in persons with dementia has not been extensively studied despite the prevalence of the problem (34). This section addresses a few of the many behavioral and mood problems that people with dementia may face. problems of Mood and Experience of Distress Persons with dementia often experience changes in mood or personality. Families may report that a formerly gentle person has become hostile and angry, or that a trusting person has become suspicious. Some persons with dementing illnesses shift quickly from laughter to tears or anger with little or no apparent cause. Catastrophic Reactions.Persons suffering from a dementia often become angry, irritable, or upset over seemingly minor situations. Families report that such outbursts are a major problem. Clinicians refer to such behavior as a catastrophic reaction (12) to distinguish it from behavior in a person with no brain injury. The episode maybe minor (shouting or stubbornness) or major (hitting, or swinging a weapon). Catastrophic reactions may precipitate placing the individual in a nursing home or other long-term care institution (40).

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74 l Losing a Million Minds: Confronting the Tragedy of A/zheimers Disease and Other Dementias There is also evidence that when such behavior recurs frequently, however, it may cause the person to be denied admission to nursing homes, day care, home care, or other services, or may cause the person to be transferred to another setting (see ch. 7). The behavior often leads to heavily medicating or physically restraining the patient (28). Medications and restraints can lead to medical complications and severely limit the individuals freedom and quality of life. Unlike similar behavior in a cognitively well person, catastrophic reaction behavior is thought to be the result of brain damage and largely beyond the control of the person with dementia (19). It may result from failure to understand a request, failure to comprehend a situation, fatigue, or pressure to perform beyond the individuals limited capabilities (19). Persons whose thinking is impaired understandably can become frightened or anxious in situations they cannot understand, and that anxiety may translate into outbursts. These individuals may also have lost the ability to inhibit their behavior. Caregivers often view such outbursts in the same way they would view it in a well person deliberate and under the persons willful control. Their response may be restrictions, punishment, arguments, or explanationsresponses that further distress the individual and increase anxiety and agitation (22). When catastrophic reactions are properly recognized, however, they respond to a variety of interventions; one of the most successful is making the persons environment more supportive of his or her disability. Training family and professional caregivers in appropriate responses is often a key to controlling these behaviors (30). Confused, disoriented persons with compromised intellectual function may occasionally become combative or threatening. That is usually an extreme catastrophic reaction. Since these persons may also be strong and mobile, combative behavior can present serious problems to caregivers. A man suffering from dementia may repeatedly push, shove, or knock down his frail, elderly wife who is trying to care for him. The confused person may not know whom he is fighting; he may be frightened or misunderstand the situation. For example, he may believe that his son is a robber or that the nurse trying to bathe him is attempting to rape him (30). Respite programs or nursing homes may refuse to care for violent patients, whom they fear pose a threat to staff or other residents, Such behavior is not intentional on the part of the person with dementia and therefore must be treated differently from similar behaviors in persons with normal cognitive functions (22). Catastrophic reactions and violent behavior are often amenable to nonpharmacological interventions when steps are taken to reduce the stress the individual is experiencing. Judicious use of medication can effectively augment the supportive environment to control frequent or extreme reactions (22,43). Experienced professional caregivers report far less of this behavior than do untrained staff. Depression-Some persons suffering from dementia are also clinically depressed (43). The likelihood of depression secondary to the dementing process may vary with the disease entity (18). The literature presents contradictory data on the frequency with which depression arises in persons with Alzheimers disease or multi-infarct dementia. Clearly, not everyone with a dementing illness experiences such periods. Depression responds to a variety of treatments and it should be treated when possible both because it can further impair a persons thinking and because it causes suffering (18,41; also ch. 3). Persons whose primary problem is a clinical depression may also show cognitive impairment. Treatment of the depression may alleviate the cognitive problems. For that reason, persons showing symptoms of both depression and confusion or memory loss should be carefully evaluated. Apathy.Persons with some types of dementing illnesses may become apathetic, listless, unmotivated to participate in activities, or unwilling to maintain adequate personal hygiene. Such behavior may be misinterpreted by untrained caregivers as laziness or stubbornness (13,22). Victims of Alzheimers disease often lack the ability to plan or initiate meaningful activities. In an environment that offers little activity or sensory

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Ch. 2Characteristics of Persons With Dementia 75 stimulation, these persons may lapse into apathy, wandering, or repetitious, meaningless motions. Dramatic changes can occur when such persons are transferred to a special care setting that offers suitable structured activity and sensory stimulation, and that encourages individuals to use remaining abilities (see ch. 7). Restlessness.Persons with dementia often become restlesspacing, wringing their hands, talking, etc. Pacing in front of the nurses station or asking the same question over and over for several hours is often reported as a source of distress to caregivers, who may ask that the individual be given tranquilizers, even though the restlessness presents no harm to the person with dementia. Motor restlessness is also a common side effect of medications and is responsive to reduction in dose. Some clinicians do not treat it because they assume it is part of the dementia. Subjective Feelings. Loss of cognition does not necessarily change a persons ability to experience a range of emotions. Until late in the course of the illness, people probably are experiencing the emotions that are reflected in their behavior (30). Thus, although they may not change how well a person remembers things, interventions can reduce a persons unpleasant feelings (21). Persons with Alzheimers disease may lose extensive cognitive skills and functions, but their ability to express and give affection remain for most of their illness. They can experience joy and enjoy humor. Caregivers report that these attributes can be elicited through provision of good, supportive care. Also that positive aspect helps to sustain family caregivers. Problems of Behavior Disruptions of the Sleep/wake Cycle.Recent work suggests that nocturnal sleep is disrupted in Alzheimers disease. Persons suffering from dementia are often awake at night and may dress, pack their clothing, attempt to use the stove, or leave the house and wander the streets. Such behaviors require constant night-time supervision or a secure setting to ensure safety (22). That requirement may lead to nursing home placement when the family caregiver becomes exhausted. However, clinicians report that sleep problems can be reduced both through careful use of medications (41) and with improved care techniques (5). Loss of the Internal Clock.Because these individuals have lost their internal sense of times passage, they may insist that it is time to go home immediately after arriving for a visitor they may accuse others of never visiting or never feeding them. An individuals impaired memory may make it impossible for him or her to understand explanations (22). Wandering. -Cognitively impaired people may pace the floor, or they may wander out of their residence. They may not realize that they are in traffic, or in a high crime area. They may say that they are in a different place or that they are returning to a home or job that existed in the past. They may be inappropriately dressed or they may fall, increasing the risk of injury. Those who realize that they are lost may panic, Unlocked care facilities may refuse to accept individuals with dementia who are known to wander, because they cannot provide adequate supervision. Wandering and the risks associated with it can be controlled through the use of nonrestraining environmental supports. Simple, unfamiliar latches can keep people with dementia on the premises because they are unable to learn how to operate the new latches (22). Several companies now market electronic monitoring systems for nursing homes. Research Triangle Institute has completed a feasibility study of devices to monitor wandering (36). Suspicion and Paranoia.Some persons with dementing illnesses may become suspicious; they may believe that they are being robbed, that others are attempting to poison them, or that their families have taken all their possessions and money (35). These individuals may be able to remember unfounded suspicions and fears in detail even when they cannot recall other simple information. Such suspicion can be understood in part as an aspect of the memory impairment (the individual has forgotten where things are), but for some persons with dementia it goes beyond that. It may be an expression of his or her experience of numerous losses (of memory, friends, freedom, health) or may be a direct result of the disease

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76 Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dernentias process. Family members who devote their lives to the care of such persons are often hurt by this accusatory behavior. In a group setting, the individuals adamant reports of mistreatment or theft may complicate efforts to ensure quality care and patient rights. Perseveration-persons with dementia may repeat a motion or activity over and over, a behavior known as perseveration. They seem to have gotten stuck in that activity. They may wash only their left arm, or may repeat the same meaningless phrase all day (22). Social Inappropriateness -As noted, persons with dementing illnesses may act inappropriately because they do not know where they are, who they are, or who is with them. They may mistake children for parents, a nurse for a wife, or another nursing home resident for a spouse. They may think they are in a childhood home. They may be unable to express their need to use the toilet. Such confusion leads to a range of socially inappropriate behaviors that can place an individual with dementia at risk. Some of these behaviors may be interpreted by caregivers as sexually abnormal: a man may take down his trousers because he is searching for a toilet, for example, or may climb into the wrong bed (22). Although lost, confused, or frightened individuals who have dementia may act inappropriately, persons with certain dementing illnesses may retain for a long time a semblance of social skills that helps conceal the extent of their intellectual difficulty; this can obscure their need for help and assistance. Trained caregivers can take advantage of these retained social skills to improve the quality of life for the individual; in supportive settings, these persons are able to enjoy social groups and make new friends (2 I). Sexual Behaviors-Most studies of patient behavior have shown that individuals who have never had a history of abnormal sexual behavior rarely develop such behaviors with the onset of a dementia (2). Occasionally, institutionalized persons will engage in self-stimulation in the presence of others. They may not realize they are not in private. That behavior seems to occur in persons who are severely demented and also are severely deprived of stimuli, activity, and pleasure, There is no evidence that persons with dementia pose any sexual threat to children or others (22). Impairment of Reason and Judgment.Persons with impaired intellectual function often show a loss of reason and judgment (35). That may be due to disorientation, to forgetting information before all the facts of a situation can be thought through, or to the disease process itself, which in Alzheimers disease and some other dementias afflicts these portions of intellect selectively. Persons with dementia who can no longer live alone safely because, for example, they continually leave the stove on, may be able to argue effectively they are fine and that their families are trying to take away their independence. Such skill in arguing can lead the caregiver to the false premise that an impaired individual is aware of the endangering behavior (22). A particularly difficult problem is knowing when someone can no longer drive safely. A car is the only available form of transportation for many people. Loss of driving privilege can be demoralizing for the individual with dementia and stressful for the caregiver and physician. However, persons with dementia are at significant risk of accidents. They often have poor judgment and a slow response time. They depend on habit to drive and may be unable to think quickly in an emergency. Most State laws do not require a test of intellectual function for renewal of a drivers license. Uniform guidelines for repeat testing of drivers, particularly over the age of 55, might be beneficial. Determining the extent of a persons ability to make responsible decisions regarding property may also be difficult (see ch. 5). Because of the selective nature of impairments, the usual tests of legal competency may not reveal the absence of good skills in reasoning and judgment or the ability to remember a decision long enough to think about it. Individuals with dementia may not realize they are being exploited or abused and maybe unable to remember or report abuse. In addition to being exceptionally vulnerable to poor care, such individuals may fall victim to unscrupulous sales people and to fraudulent business schemes. Other

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Ch. 2Characteristics of Persons With Dementia l 7 7 individuals may erroneously charge that they are being raped or assaulted. These difficulties may be more complicated in special care programs where all the residents have dementia and no one is capable of giving evidence of abuse (see ch. 7). Hallucinations.Hallucinations are sensory experiences unique to the individual: he or she either hears, sees, smells, tastes, or feels something not experienced by others. When they occur, hallucinations are alarming to the family because of their association with insanity. They create risks for the patient who acts on them. Hallucinations usually respond to medication (37). People with dementia also have illusions: they misunderstand sensory information so that they have an incorrect perception of reality. A man may believe a nurse is his wife. One man believed that his adolescent son was a boarder renting a room. DelusionsDelusions are false, fixed ideas. As with suspicion, persons with dementia may be able to maintain a delusion for long periods, but at the same time be unable to remember factual information for more than a few minutes. The fixed nature of a delusion may seem to contradict an individuals memory impairment. The caregiver often feels that if the individual can remember a delusion, he or she should also be able to remember facts (22), paradoxical Behaviors. -Persons suffering from dementing illnesses often exhibit seemingly paradoxical behaviors, some of which have been mentioned. A person may be able to play cards but unable to remember a family members name. A person may be able to remember emotionally loaded material (e.g., being angry with someone) but unable to remember facts (e.g., that the matter that caused the anger has been explained). Someone may be able to do a task one day but not the next. Someone may still be able to work but suddenly get lost driving home from the office. An individual may behave in ways that seem to be deliberate actions to get attention or to control the responses of others, even when cognitive testing shows that the person is too impaired to carry out such manipulative behavior. Such seemingly paradoxical behaviors are probably due to which specific areas of function have been spared or impaired in the persons intellect and to the fluctuating and incomplete disruption of necrologic function. Whatever the cause, paradoxical behavior can affect the quality of the relationship between the individual with dementia and caregiver. This relationship can be positive: when much of a persons former personality is intact, a good deal remains that the family loves and enjoys. That retained personality can support the family in continuing to care for the individual (2 I). Yet when it appears that an individual can function well in one way, caregivers may expect an equivalent level of function in others, and, in so doing, may overstress the individual with dementia. When paradoxical behaviors appear to be intentional efforts to hurt or control a caregiver, caregivers sometimes respond as they would to such behavior in a well person. Such paradoxes can also cause confusion in the assessment of an individuals legal competence or ability to remain employed (22). Excess Disability Brought About by Outside Factors The level at which a person with a dementing illness is able to function is affected by other factors than the dementia. The first of these, treatment of secondary psychiatric symptoms, has been discussed. Others include the presence of other illnesses or reactions to medications, delirium, sensory impairments, or external stressors. Modifying or alleviating any of these factors can raise the level of function of the individual with dementia, even when the baseline impairment due to the dementia cannot be modified. The presence of symptoms that can be modified in this way has been labeled excess disability (16)a term used by clinicians because it effectively contradicts the therapeutic nihilism often assumed in the care of persons with dementia (21,37). Unfortunately a worsening of a persons behavior or thinking is often assumed to be evidence of worsening of the dementia, and such persons are not examined for other, potentially treatable conditions which compound their disability (2 I). Presence of Other Illnesses Elderly persons are at risk of many other illnesses: heart disease, arthritis, diabetes, osteoporosis, and so on. The presence of any other con-

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78 Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias dition in addition to the dementia complicates the management of both. Persons with dementia may not be able to learn self-care or compensatory skills (e.g., insulin administration, use of a walker, or diet management) (24). Further, the presence of another illness may further impair the individuals cognitive function. Thus, treatment of the condition may somewhat improve the intellectual function as well (41). Persons with a dementing illness may also suffer from preexisting psychiatric disorders, that can compound their behavioral problems. Presence of Delirium Delirium (also called acute brain syndrome) is a decline in intellectual functioning with clouded consciousness. As discussed earlier in this chapter, persons with dementia frequently develop a delirium from other illnesses or drug reactions. That can further impair their thinking. For these persons, the careful monitoring of health status and the adjustment of treatment regimen can improve the level of function (20). Presence of Sensory Impairment Persons suffering from a dementia may also suffer from sensory impairments (loss or reduction of hearing, vision, taste, or smell) common in the elderly. Such impairment may be overlooked in individuals who are unable to complain of disability or whose behavior is misinterpreted. Sensory loss doubly impairs a person who does not realize the impairment or who lacks the ability to compensate for it (41), A person who suffers from a hearing loss may hear only whispers. If the person is also intellectually unable to realize this impairment, the person may conclude that others are talking about him or her, and become suspicious or hostile (22). Individuals with dementia who need corrective eyeglasses or hearing aids should be assisted in using them. Caregivers must remind them to use these devices, and must assume responsibility for their maintenance. New eyeglasses, contact lenses, and hearing aids require that the person learn to use them; because they do not exactly reproduce the lost sense, they require that the user adapt to them. (Eyeglasses distort vision; in someone without dementia, the brain quickly learns to ignore the distortion. Similarly, hearing aids magnify all sounds including those that the brain must learn to filter out.) Some persons suffering from dementia may never learn to adjust to new devices. Research is needed to develop supportive devices that are easier to learn to use. Sensory deficits can be eased to some extent without the use of eyeglasses and hearing aids. Reducing background noise and glare, improving levels of lighting, and speaking clearly are important aids for confused persons (see ch. 7). Presence of External Stressors When a person suffers from a dementia, seemingly low levels of stress (e.g., the presence of several people in the room, a medical examination, or getting lost) can significantly reduce his or her ability to function (30). Indeed, whereas stress in the intact individual may enhance the ego, stress in the demented patient may lead to ego disintegration (41). The stressors that can precipitate such a drop in cognitive function maybe physical (mild illness, discomfort, or fatigue), exogenous (travel, or a change of environment), or psychological (fear, or discouragement over the inability to do a simple task). Keeping persons with dementia as healthy as possible, supporting sensory impairments, and adjusting demands on them can therefore improve function and reduce behavior problems. Terminal Stages of the Illness As the disease progresses, more function is lost and these individuals gradually become totally dependent on others for care. Damage to the brain is profound and more generalized than in earlier phases. As the apraxia and aphasia progress, disruptive behaviors such as wandering and suspiciousness are lost. Individuals may lose the ability to swallow without choking. Clinicians report that at some point persons with dementia are no longer able to participate in group social activities. Caregivers are often uncertain of the extent to which the individual is aware of their presence. Physical therapy and nursing care can reduce problems secondary to the dementia, such as contractures (abnormal shortening of muscle tissue),

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Ch. 2Characteristics of Persons With Dementia l 7 9 bedsores, impactions, and dehydration. Sensory be kept alive for some time through aggressive stimulation (such as music) and touch can supmedical care and life-sustaining systems, raising port what function remains. Some individuals can difficult ethical questions for caregivers (see ch. 5). CONCEPTUAL ISSUES RAISED BY THE CHARACTERISTICS OF PERSONS WITH DEMENTIA Is Dementia a Disease or Normal Aging? In the past, the set of symptoms identified as dementia was termed senility and assumed to be a part of normal aging. The shift from that belief to anotherthat dementia is a pathological syndrome caused by a group of diseaseshas implications of public responsibility for the care of its victims: physicians have a responsibility to diagnose and treat the condition; caregivers and others must accept abnormal behavior as illness-produced rather than crazy or deliberate; research can be expected to improve treatment. Government can be expected to provide the same services for these individuals as for victims of other chronic illnesses such as heart disease or cancer. In fact, although most authorities agree that dementia is a disease syndrome, the case for its being a concomitant of normal aging has not been disproved. The distinction between mental deterioration that occurs with age and that caused by disease rests on several premises. First, a process that affects all individuals would be considered a part of aging, while one that affects only a fraction of people would be called disease. Second, a condition that is due to aging should not be confused with a factor that is caused by longterm exposures or repeated insults; it should be considered an intrinsic part of the aging process itself. Mental symptoms severe enough to be called dementia do not affect all people, even if they live to a very old age. Third, finding a cause not intrinsic to aging would confirm that dementia is not a part of (normal aging. A few dementing disorders have been traced to specific causes (viruses, head trauma, or small strokes that are not due to aging), but the cause of Alzheimers disease remains unknown. The impact of a shift in public attitude toward dementia has already been translated into increased funding for research, proposed legislation, media attention, consumer demand for services, and contributions to the medical literature. Yet existing State and Federal laws and the attitudes of some physicians and nursing home personnel reflect the confusion and ambivalence that result in uneven treatment and access to resources. Are Persons Eligible for Services on the Basis of Age or Disability? The Federal Government offers many services to people not because they are ill but simply because they are over age 64. Persons with dementia often fall between the cracks sometimes eligible for services to the elderly, sometimes eligible for services for the ill, and sometimes eligible for neither (see ch. 11). For example, Federal medical assistance does not provide for service in institutions for the mentally disabled to persons between ages 22 and 65. If institutional care is needed, persons with dementia who are under age 65 must be cared for in a nursing home if they are to receive medical assistance. Nursing homes are often reluctant to accept younger persons with dementia because they fear the potential behavior disorders in a physically able person. Some persons with dementia may have nowhere to go. Is Dementia a Mental Disorder; an Organic Disease t or Something In-Between? Disorders causing dementia lie on the border between traditional conceptions of mental disorders and organic diseases, Concepts of mental disorders are based on observed behavior; explanations of the cause can include madness incited by emotional stress, alcoholor drug-in-

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80 Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Oementias duced delirium, or cell surface receptor changes associated with depression, Concepts of organic diseases tend to focus on cancer, heart disease, or some other condition in which a concrete physical disability results from a structural or chemical disruption of normal body function. There has always been a broad and ill-defined gray zone between organic disease and mental disorder; progress in brain research over the last two decades has made the distinction even less defensible for many disorders. The disorders covered in this assessment are organic diseases caused by changes in the brain, an organ whose cells can suffer damage in much the same way other organs do. The resultant symptoms of such physical damage, however, are behavioral, those most often ascribed to mental illnesses: intellectual decline, cognitive impairment, and emotional instability. The diagnosis and treatment of persons with dementing disorders reflect that duality. Alzheimers disease, for example, falls precisely between neurology and psychiatry, and it is treated by both disciplines. Recent recognition of the prevalence of Alzheimers disease has attracted increased interest from physicians engaged in primary care, such as internists, geriatricians, and family practitioners. The diagnostic and therapeutic care that an individual receives may hinge on which type of practitioner the person sees. That may be advantageous in that different specialty groups may try different approaches, but it can also cause problems because care may be inconsistent or insufficient, depending on the training and competence of the physician in charge. The distinction between mental and physical illnesses is prominent in public policies. Federal programs for drug abuse and alcoholism, for example, are administratively grouped with programs for diseases such as schizophrenia and manicdepressive illness, and kept separate from programs for heart disease, cancer, or arthritis. Because disorders causing dementia include features of both organic disease and mental debility, they often fall into an administrative limbo: they are sometimes covered by a mental health program, sometimes by a medical program, and often by neither. An individual maybe excluded from one set of programs (e.g., under rules for determining eligibility for disability benefits), included in another (e.g., in Federal policies on biomedical research), or lost amidst a complex and sometimes contradictory combination of inclusive and exclusionary rules (as in many programs for long-term care). Each of these issues leads to local variations in the amount and type of care available to individuals or their families, based on local interpretations of normal aging, age-related eligibility, and mental or physical illness. Some community mental health centers offer excellent services for persons with dementia; others do not. Supportive services available to the elderly, such as transportation and meals, may not be available to younger persons with dementia. What Share of Funds Should Be Allocated to Research Into Patient Care? In a setting of limited resources, allocation decisions must be made between funds for research into the cure or prevention of dementing illnesses and funds for research into improved care techniques. The sheer numbers of persons expected to develop dementia and the enormous potential cost of their care argues strongly for additional funding to prevent or cure the condition. However, there are also excellent arguments for research into ways to alleviate the suffering of the victim and the devastation of the family caregiver; more efficient ways to provide care may well affect the long-term costs of care. Ample precedent exists for treating symptoms and alleviating suffering in persons with chronic irreversible diseases. But several unique problems arise with dementia. First, there is a widely held assumption that nothing can be done for persons with dementing disorders. If this were true, then failure to spend funds on unnecessary interventions would be justified. By the same token, a physicians failure to spend time with a patient presenting with dementia would be justified as a responsible conservation of valuable time. If interventions are beneficial, however, persons with dementia and their families are justified in

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Ch. 2Characteristics of Persons With Dementia 81 asking for as much treatment as victims of other chronic illnesses receive. The second problem is the type of treatment persons with dementia seem to require. Persons with progressive dementing illnesses will experience continual declines in intellect and in their capability for self-care and independent living, and will eventually reach a state of total dependency, But decline in some abilities can sometimes be postponed, and some disturbing symptoms can be treated. The recommended intervention is often not medication or a medical procedure, but modifying the environment. Doing so appears to improve the quality of life for such individuals, and clearly benefits the caregivers. Clinical experience has demonstrated that good medical care and family support can reduce distressing behaviors in the home (30). And pilot projects have shown that persons with dementia function better in specifically designed settings than in traditional nursing homes (see ch. 7). The needs of a person with dementia can be compared with those of the mobility-handicapped person: providing access routes treats the mobility-handicapped so that his or her life can be more normal. Yet spending funds on a caregivers home is more difficult to justify than spending them on medications for the person with dementia. Critical questions remain unanswered. Research into improving care is in its infancy, and the effectiveness of specific interventions is not fully understood. Little is known about which individuals would benefit from improved care. Scant research has been done on medications to control certain symptoms or on technologies that would support self-care. The number of persons with dementia who would actually benefit from new methods of care or who are now overmedicated, undertreated for concurrent illness, restrained, or deprived of needed sensory stimulation is unknown; estimates range from a few to most, Nor are the costs of supporting optimal function well understood. The rate of disease progression when function is maximally supported has not been completely documented. Thus the cost-effectiveness of optimal care cannot be established. Investment in research in patient care and health care delivery is needed to answer these questions. Some estimate that it may be many years before a cure is found. If so, research is urgently needed to tell us how to provide humane care at an acceptable cost. CHAPTER 2 REFERENCES 1. American Psychiatric Association, Diagnostic and Statistical Manual of Mental Disorders, 3d ed. (Washington, DC: 1980.) 2. Berlin, F., Associate Professor, School of Medicine, Johns Hopkins University and Director, Sexual Disorders Clinic, Johns Hopkins University, School of Medicine, personal communication, February 1986. 3. Blessed, G., Tomlinson, B. E., and Roth, M., The Associations Between Quantitative Measures of Dementia and of Senile Change in the Cerebral Grey Matter of Elderly Subjects, British Journal of Psychiatry 114:797-811, 1968. 4. Cohen, D., Kennedy, G., and Eisdorfer, C., Phases of Change in the Patient With Alzheimers Dementia: A Conceptual Dimension for Defining Health Care Management, Journal of the American Geriatrics Society 32(1):11-15, 1984. 5. Coons, D., A Residential Care Unit for Persons With Dementia, contract report prepared for the Office of Technology Assessment, U.S. Congress, 1986. 6. Coons, D,, Chenoweth, B., Hollenshead, C., et al., Final Report of Projection Alzheimer's Disease: Subjective Experience of Families (Ann Arbor, MI: Institute of Gerontology, University of Michigan, 1983). 7. Cross, P. S., and Gurland, B.J., The Epidemiology of Dementing Disorder s, contract report prepared for the Office of Technology Assessment, U.S. Congress, 1986. 8 Foley, W. J,, Dementia Among Nursing Home Patients: Defining the Condition, Characteristics of the Demented, and Dementia on the RUG-II Classification System, contract report prepared for the

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82 Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias 9. 10. 11. 12. 13. Office of Technology Assessment, U.S. Congress, 1986. Folstein, M.F., and Rabins, P. V,, Psychiatric Evaluation of the Elderly Patient, Primary Care 6:609620, 1979. Folstein, M. F,, Folstein, S. E., and McHugh, P. R., Mini-Mental State: A Practical Method for Grading the Cognitive State of Patients for the Clinician, Journal of Psychiatric Research 12:189-198, 1975, George, L. K., The Dynamics of Caregiver Burden, final report submitted to the Association of Retired Persons-Andrus Foundation, 1984, Goldstein, K., The Effect of Brain Damage on the Personality, Psychiatry 15:245-260, 1952. Gwyther, L. P., Care of the Alzheimers Patients: A Manual for Nursing Home Staff (Washington, DC: Alzheimers Disease and Related Disorders Association and American Health Care Association, 1985). 14. Hachinski, V., Different Diagnosis of Alzheimers Dementia: Multi-Infarct Dementia, Alzheimers 15. 16. 17. 18. 19. 20. 21 22 Disease, B. Reisberg (cd.) (New York: Free Press, 1983), Hughes, C. P., Berg, L., Danziger, W. L., et al., A New Clinical Scale for the Staging of Dementia, British Journal of Psychiatry 140:556-572, 1982. Kahn, R. L., The Mental Health System and the Future Aged, The Gerontologist 15:24-31, 1975, Katzman, R., Clinical Presentation of the Course of Alzheimers Disease: The Atypical Patient, Modern Approaches to the Dementias, Part II, C ,F. Rose (cd.) (Basel, Switzerland: Krager, 1985). Katzman, R., Lasker, B., and Bernstein, N., Accuracy of Diagnosis and Consequences of Misdiagnosis of Disorders Causing Dementia, contract report prepared for the Office of Technology Assessment, U.S. Congress, 1986. Mace, N. L., Assessment and Intervention for Behavioral Issues in Dementia, paper presented at the Annual Conference, Alzheimers Disease and Related Disorders Association, Minneapolis, 1984, Mace, N. L., Self-Help for the Family, Alzheimers Disease and Related Disorders, W.E. Kelly (cd.) (Springfield, IL: Charles Thomas Publishing, 1984). Mace, N. L., Home and Community Services for Alzheimers Disease: A National Conference for Families, U.S. Department of Health and Human Services and Alzheimers Disease and Related Disorders Association, May 2, 1985. Mace, N. L., and Rabins, P.V,, The 36-Hour Day: A Family Guide To Caring for Persons With Alzhei mers Disease, Related Dementing Illnesses, and Memory Loss in Later Life (Baltimore, MD: Johns Hopkins University Press, 1981). 23. 24. 25. 26. Mace, N. L., and Rabins, P. V., The Impact of Dementia on the Family: Two-Year Followup, paper presented at the Gerontological Society of America, 1982. Mace, N. L., Hardy, S. R., and Rabins, P. V., Alzheimers Disease and the Confused Patient, Physical Therapy of the Geriatric Patient, O. Jackson (cd.) (New York: Churchill Livingston, 1983). Markesberry, W., Professor of Pathology and Neurology, University of Kentucky College of Medicine, personal communication, 1986. McHugh, P. R., and Folstein, M. F., Psychopathology of Dementia: Implications for Neuropathology, Congenital and Acquired Cognitive Disorders, R. Katzman (cd.) (New York: Raven Press, 1979). 27. McKhann, G., Drachman, D., Folstein, M,, et al., 28 29 30. 31. 32. Clinical Diagnosis of Alzheimers Disease, Neurology 34:939-944, 1984. Orr, N., Director, Hillhaven Corporation Special Care Units, personal communication, 1986. Price, D, L., Basic Neuroscience and Disorders Causing Dementia, contract report prepared for the Office of Technology Assessment, U.S. Congress, 1986. Rabins, P. V., Management of Irreversible Dementia, Psychosomatic 22(7):591-597, 1981. Rabins, P. V., Mace, N. L., and Lucas, M.J., The Impact of Dementia on the Family, Journal of the American Medical Association 48:333-335, 1982. Reisberg, B., Ferris, S., and de Leon, M.J, Senile Dementia of the Alzheimers Type: Diagnostic and Differential Diagnostic Features With Special Reference to Functional Assessment Staging, Proceedings, Second International Tropon-Bayer Symposium, 1984. 33. Reisberg, B,, Ferris, S.T., de Leon, M.J., et al., Age34. 35 36 Associated Cognitive Decline and Alzheimers Disease: Implications for Assessment and Treatment Thresholds in Aging (London: Academic Press, 1985), Risse, S. C., and Barnes, R., Pharmacologic Treatment of Agitation Associated With Dementia, Journal of the American Geriatrics Society 34:368-376, 1986. Roth, M., Senile Dementia and Its Borderlands, Psychopathology in the Aged, V.J.O. Cole and J.E. Barrett (eds.) (New York: Raven Press, 1980). Rouse, P.J,, Griffith, J.D., Trachtman, L. H., et al., Aid for Memory Impaired Older Persons: Wandering Notification Report of a Needs Assessment and Feasibility Study, Research Triangle Institute NASA: NASW, 3841, 1986. Royal College of Physicians, Organic Mental Impairment in the Elderlv, 15(3), 1981.

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38. Sjogren, H., Clinical Analysis of Morbus Alzheimer and Morbus Pick, Acta Psychiatric and Neurological Scandinavia 82:69-113, 1952. 39. Swash, M., Smith, C. M., and Hart, S., The Dementia of Alzheimers Disease, Modern Approaches to the Dementias, Part II, C.F. Rose (cd.) (Basel, Switzerland: Krager, 1985). 40. U.S. Department of Health and Human Services, Alzheimers Disease: Report of the Secretarys Task Force on Alzheimers Disease, DHHS Pub. No. ADM 84-1323 (Washington, DC: U.S. Government Printing Office, 1984). Ch. 2Characteristics of Persons With Dementia 83 41. Wells, C. E., Diagnostic Evaluation and Treatment in Dementia) Dementia, 2d ed., C.E. Wells (cd.) (Philadelphia, PA: F.A. Davis, 1977). 42. Wells, T., Urinary Incontinence in Alzheimers Disease, contract report prepared for the Office of Technology Assessment, U.S. Congress, 1986. 43. Whitehouse, P.J., Alzheimers Disease) Current Therapy in Necrologic Disease 1985-1986, R.T. Johnston (cd.) (Philadelphia, PA: B.C. Decker, 1985).

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Chapter 3 The Diseases: Diagnosis, Treatment, and Scientific Background While it is important to keep the perspective that the vast majority of elderly people do not demerit, from the neurologists perspective these numbers of patients [with dementia] are staggering. Stuart A. Schneck, M.D. American Academy of Neurology Annual Meeting, 1986 The question Why study dementia? is coming to be answered very clearly. There are few issues receiving public attention today whose ramifications touch upon so many areas of human well-being. The large number of lives involved; the severity of the physical, psychological, and economic influences of the disease upon the victims and related persons; and the long duration of the illness and [their] poor prognosis establish [the] dementia(s) as a fundamental problem in our society. Mary L.M. Gilhooly and James E. Birren, in The Dementias: Policy and Management, M.L.M. Gilhooly, S.H. Zarit, and .J.E. Birren (eds.] (Englewood Cliffs, NJ: Prentice-Hall, 1986) The attitude of (nothing can be done results in nothing being done, and the functional ability of the patients is adversely affected. James A. Greene, Jan Asp, and Nancy Crane, Journal of the Tennessee Medical Association, September 1985, vol. 559, p. 5.59

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CONTENTS Page Diagnosis . . . . . . . . . . . . . . . 87 Problems in Diagnosis . . . . . . . . . . . 87 The Diagnostic Process . . . . . . . . . . . 89 Characteristics of Specific Diseases . . . . . . . . . 97 Alzheimers Disease. . . . . . . . . . . . . 97 Dementia Caused by Blood Vessel Disease. . . . . . ........112 Other Dementias . . . . . . . .....................113 Chapter 3 References . . . . . . . . . . . ....115 Tables Table No. Page 3-1. Examples of Diseased Brain States Caused by Failure of Organ Systems. 90 $2. Selected Laboratory Tests To Diagnose Specific Diseases and Search for Reversible Causes of Dementia . . . . . . . . . 92 3-3.Diagnostic Criteria for Dementia. . . . . . . . . . 96

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Chapter 3 The Diseases: Diagnosis, Treatment, and Scientific Background Dementing disorders exact a staggering toll on patients and their families. Many of the worst problems are caused by the behavioral and intellectual effects of the diseases, which rob patients of their autonomy and exert emotionally wrenching pressures on family and friends. The larger issues related to caring for patients are covered elsewhere in this assessment; this chapter provides clinical and scientific background on the diseases themselves. The clinical and scientific information is intended to introduce other sections of the report, and is not followed by policy issues and options because these are found in other, more policy-oriented chapters. Over 70 disorders can cause dementia. This chapter describes the clinical and scientific background on some of these disorders. Medical management of the various disorders causing dementia depends on the characteristics of individual patients. Treatment is quite effective for a few disorders, and several behavioral symptoms common to many of the most prevalent diseases frequently respond to medication. Symptoms of dementia are often made worse by acute medical illnesses and drugs, and prompt medical attention can reduce excess disability caused by poor health and medications. No cure is available, however, for the vast majority of dementing conditions, and the symptoms of intellectual decline frequently continue to worsen despite the best medical efforts. DIAGNOSIS Once the symptoms of dementia have been identified, the search for a specific cause commences. In the hands of experienced and capable physicians, the diagnostic process is highly efficient and conveys relevant information about the putative causes, possible treatments, and probable course of the disease in a given patient. The accuracy of detecting dementia has improved to over 90 percent at specialized centers in recent years (163). Yet diagnostic error is higher for identifying the specific diseases causing dementia and detection of the symptoms remains poor among some physicians. Many physicians are now apt to make the diagnosis of Alzheimers disease, for example, any time a patient has notable intellectual or memory impairment. This contrasts markedly with medical practices common until recent years, when Alzheimers disease was underdiagnosed because of ageism, different medical terminology, and errant theories of the causes of the disease (228). Many patients now in nursing homes were evaluated during the periods of underdiagnosis, and their records retain outdated diagnostic labels such as (cerebral atherosclerosis or chronic brain syndrome. The diagnosis of a disease that causes dementia usually begins with identification of mental decline, either from querying patients or others who know them. Detecting early dementia can be dif ficult, but: ., dementia should be suspected whenever mental changes of insidious onset emerge without sufficient situational stress and gradually interfere with the daily living activities. Dementia can be reversible or irreversible, precipitously progressive or indolent, bristling with multiple cognitive deficits, or characterized almost exclusively by disturbances of affect, motivation, and personality (218). Problems in Diagnosis Inaccurate diagnosis can arise from several sources. The errors may stem from atypical presentation of the disease, denial or misunderstanding by the patient or family, or physician error. 87

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. 88 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias Symptoms may be mild and ill defined, or the disease may have progressed so far that any number of diseases could have caused the patient to lose most mental functions (84). The patient may not experience memory loss, or may exhibit bizarre behavior that is ascribed to depression or schizophrenia (163,289). The history may be inaccurate, due to inadvertent or deliberate reporting errors by the patient or the family. The patient or family may wish to deny the presence of any problems, or they may have identified the wrong ones. No family members maybe available to give a medical history. The onset of most dementing illnesses is not sudden, but patients and families may not notice a problem until a cataclysmic event or new source of stress dramatically highlights a loss of mental function. Finally, tests may be misinterpreted, the proper tests may not be ordered, or the symptoms of dementia may be missed by the health professionals who care for the patient. Several factors predisposing to diagnostic error l l l l l l have been identified: ageism (neglect caused by expectations that a patient is just senile); failure to use strict diagnostic criteria; insufficient time devoted to obtaining a history or examining patients; absence of a policy of searching for remediable causes of confusion; inadequate recourse to special tests; and incompatibility between the diagnostician and the patient (due to cultural, educational, or ethnic background (125)), Some error is due to lack of knowledge, and this can be addressed by improved education. Other errors are due to failure to apply what is known. This can be due to the pressure of time, the clinical complexities of a particular case, lack of access to diagnostic technologies, or physician disinterest. Discovery of effective medical treatments for the common dementing conditions, especially Alzheimers disease and multi-infarct dementia, would give physicians a major reason to find the correct diagnosis, likely reducing the diagnostic error rate in routine practice. The problems of misdiagnosis that arise from patients and their families can be addressed by public education and family support groups, but this type of problem will never be eliminated completely. Self-help groups, media attention, and accurate dissemination of scientific and medical information from laboratories into the general society are the major policy initiatives that could reduce this form of diagnostic error. Misdiagnosis by physicians can be reduced through improved education during professional training, continuing medical education, and rapid dissemination of scientific data in medical journals and books. The Federal Government has taken the lead in sponsoring basic and clinical biomedical research, and also supports many extremely useful information dissemination mechanisms through the National Library of Medicine and the National Institutes of Health (NIH). The Federal Government generally has not had a role in assuring the incorporation of new information in the curricula of health professional programs (see ch. 9). Clinical diagnosis is only as reliable as the process used to make it. Beginning with a patients history of mental change, a diagnostic algorithm is then followed to identify possible specific causes. The breadth and adequacy of these procedures depends on the knowledge of the supervising physician, the availability of diagnostic tests, and the quality of the tests. The diagnosticians knowledge is related to the availability of current medical information, active continued reading of the medical literature about diagnostic options, and the persons educational background. The availability of diagnostic tests depends on a groundwork of basic and clinical science, marketing, and local access to people trained to perform the tests, whereas quality is linked to the limitations of the test itself (how well it works at best), the competence of those who perform it, and the accuracy with which results can be interpreted. Many factors that influence the diagnosis of dementing conditions have been changing in recent years as a result of the greatly heightened interest in studying dementia. A consensus development conference of diagnosis of dementia will be held at NIH July 6-8, 1987. Diagnostic practices among specialized groups at major medical centers are often quite differ-

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Ch. 3The Diseases: Diagnosis, Treatment, and Scientific Background l 89 ent from those in other services at the same institutions, as well as from practices that prevail in community hospitals and private clinics. Most of the published data come from centers of expertise and reflect high standards for evaluation; the actual care of patients inmost communities is generally less thorough. The degree of diagnostic error is difficult to determine, however, because most studies are conducted at academic medical centers specialized in the care of dementia. Yet many persons with dementia reside in nursing homes, where they receive less thorough diagnostic evaluation. The most serious problem of diagnosis in nursing homes is widely believed to be underdiagnosis or failure to even recognize symptoms of dementia (274). Failure to detect dementia among patients ranges from 4 to 60 percent in recent studies (125). These errors are, by and large, most frequent among patients known to have confusion or behavioral change. Even more troubling is the failure to notice that a patient is confused; examining physicians missed 79 percent of the cognitive deficits at a university hospital in a recent preliminary study (207). Another report found that errors in initial diagnosis affected therapy in 41 percent of the patients referred to a specialized hospital service for dementia (145). Great improvements are thus possible in the sensitivity of detecting mental impairment and identifying its specific cause even without technological advances. Diagnostic uncertainty complicates clinical research by mixing patients with different diagnoses. A drug or diagnostic procedure maybe tested on patients with disparate diseases. Those with different illnesses or in different stages may respond but be undetected because they are lost among a large group of patients who show no effect. This can mask a benefit or danger. For a response to be detected, therefore, a drug or test must either be highly effective in a small group of patients or effective in most patients. Patient heterogeneity is thus the bane of efficient clinical testing. It does not preclude it, but it makes tests significantly less sensitive to small or moderate effects. There is no clear way around this problem in clinical research on dementia. The standard for approving clinical protocols for mentally incompe tent patients requires that the experimental procedure either pose minimal risk or promise direct patient benefit (45 CFR 1983 ed. 46). Neither condition clearly holds for most investigational work, but it is unlikely that the regulations for research on human subjects will be altered. Such changes would require, at a minimum, extensive public review before being implemented. (Consent of dementia patients to participate in clinical research is dealt with more fully in ch. 5.) The Diagnostic Process The possibility of treating some reversible syndromes that masquerade as irreversible dementia provides a strong incentive for accurate diagnosis. Families wanting to know about possible genetic risks, furthermore, cannot be advised until a specific disease has been identified. The process followed in obtaining a clinical diagnosis centers on cultivating several different sources of potentially useful information: in the patients medical and behavioral history, physical signs, laboratory tests, psychological tests, and brain imaging technologies. The process of diagnosis also includes investigating other illnesses. One recent study of persons with dementia in the community found that 30 percent had medical conditions that contributed to the patients mental deterioration, and that removal of some medications and correction of metabolic abnormalities actually improved the function of most (181). Thus broad inspection of a patients possible medical problems is important. Diagnosis is the function that both physicians and families regard as the doctors strength. Families regard diagnosis as the doctors function, above patient education, emotional support, or assistance in obtaining health and social services. Physicians concur in finding diagnosis less difficult to provide than counseling, coordination of care, or other services (113), The diagnostic process is thus generally directed by a physician with the assistance of family members or others familiar with the patients history. Patient History The specific mental and physical changes reported by patients or those who know them well

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90 Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias are extremely important in determining the possible causes of dementia. The age at which intellectual changes began, the exact functions lost, and the rate of change are all quite helpful in sorting among the various disorders. The type, frequency, and severity of mood swings, personality changes, and catastrophic emotional reactions are also useful. A history of mental decline at specific times with some recovery after each episode strongly suggests multi-infarct dementia, for example. Medication frequently causes symptoms of dementia in older patients, and examiners should find out what medication a patient is taking. Dementia pugilistic (brain damage induced by repeated head trauma) is immediately suspected in former boxers, and a history of alcoholism may suggest a detailed search for alcoholrelated damage to the brain. The patient history is taken, if possible, from the patient. This cannot be done for many individuals with moderate or severe dementia. In such cases, a history must be taken from family or friends, and corroboration by several sources is often helpful in deciding fine points about the course of the illness. The resort to secondary sources is common for pediatricians, pathologists, and veterinarians, but is unusual for many physicians who specialize in other areas. The added complexities of surrogate informants often necessitate finding corroboration for important points, especially if there is a conflict of interest between the patient and the informant (see ch. 5). The history will include the main reason medical help is sought, information volunteered by the patient or informant, and answers to questions posed by the interviewer. Specific questions are asked to elicit certain points helpful in distinguishing among the different disorders that might explain the symptoms. Abnormal involuntary movements combined with a history of a similar illness in other family members, for example, can be quite informative for Huntingtons disease. An insidious onset with early deterioration of memory for recent events is typical of Alzheimers disease, while early disturbance of a patients gait with a only a mild memory deficit inclines a physician toward a diagnosis of normal pressure hydrocephalus. The history of the illness becomes the first, and in many cases the most important, step in determining the diagnosis. It often indicates which tests will be performed to rule out or suggest specific diseases, and also alerts the diagnostician to look for specific physical symptoms in the subsequent examination of the patient. Physical Examination The physical examination consists of a battery of tests of body functions to detect signs of dysfunction or other findings associated with particular diseases. For a patient with dementia, the exam has two main emphases: signs of damage to the nervous system, and evidence of diseases of other organs that could affect mental function. Testing of several organ systems, such as the cardiovascular system, the lungs, and digestive organs, is done by an algorithm that physicians, nurses, and physician assistants learn during their professional education and progressively refine during their practice. Diseases of many organs other than the brain can induce confusion, loss of memory, and strange behavior, especially in older individuals (68) (see table 3-1), and such causes must be eliminated before a firm diagnosis of brain disease can be made. The general physical examination can, for example, identify signs of heart failure or thyroid dysfunction, which in elderly individuals can involve symptoms that resemble dementia. Table 3=1.-Examples of Diseased Brain States Caused By Failure of Organ Systems Organ system Symptoms and signs Heart failure Headache, confusion, stupor Liver failure Confusion, stupor, or coma; focal or generalized seizures, tremor Kidney failure Apathy, fatigue, confusion, stupor, generalized seizures, dialysis dementia, disequilibrium syndrome Endrocine Hypoglycemia Episodic headaches, seizures, confuHyperglycemia sion, coma Hypothyroidism Apathy, psychosis, coma Hyperthyroidism (apathetic) Cushings syndrome (CS) Apathy, psychosis, severe dementia, Addisons disease (AD) depression SOURCE Adapted from B.M, Coull, Necrologic Aspects of Dementia, Geriatric Medicine, VOI 1 C K. Cassel and J E. Walsh (eds. ) (New York Sprmger-Verlag, 1964)

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Ch. 3The Diseases: Diagnosis, Treatment, and Scientific Background l 91 Testing functions controlled by the brain and nerves-the neurological examination-is another important component. The examiner typically asks the patient to perform maneuvers or answer questions that are designed to elicit information about the health of specific parts of the brain or peripheral nerves. The examiner tests smell, vision, eye movement, muscle tone and power, touch, hearing, taste, and reflexes (both muscle reflexes and those that involve involuntary functions such as constriction of the pupils). The neurological examination distinguishes signs of brain disease. Symptoms caused by damage to a particular anatomic location in the brain or spinal cord, for example, suggest stroke, tumor, or some other physically localized phenomenon. Multi-infarct dementia is suspected in a patient with dementia who also shows other localized brain damage and has high blood pressure or diabetes, while a patient without these findings is more likely to have Alzheimers disease (48). Involuntary movements, rigidity of the limbs, and general slowness of speech and gait may induce a high suspicion of Parkinsons disease. Recent preliminary studies suggest that Alzheimers disease may be correlated with specific tests of brain functions (217). The characteristics of cognitive loss may also be useful in differentiating among possible explanations of mental change. A skillful examiner may be able to distinguish the patient with depression from one with a degenerative dementing condition, based on errors on the mental status examination due to lack of motivation or to inattention (favoring depression) versus those due to inability (thus implying brain disease). Taken together, the history and physical examination permit an 80-percent diagnostic accuracy of dementing conditions (163), lower than the accuracy of detecting the symptoms of dementia, but well within the range of many other types of disease. Laboratory Tests The diagnostician selects specific laboratory tests based on the clinical history and physical examination, which typically leave the physician with a list of possible explanations of the symptoms and signs that range from the highly probable to the improbable. Tests that might reinforce suspicion of some diseases or eliminate others from consideration are then performed. These include measurements of the concentration of cells and chemicals in the blood that might yield clues of infection or disordered metabolism, measurements of electrical activity in the brain (electroencephalograms or other more sophisticated tests), and measurements of chemicals and cells in the fluid that surrounds the brain (the cerebrospinal fluid [CSF]). A large number of white blood cells in the blood combined with fever, for example, can indicate an ongoing infection. Abnormal blood concentrations of hormones, vitamins, electrolytes, or chemicals normally filtered by the kidneys can uncover diseases of the liver, kidney, or endocrine glands or exposure to heavy metals. Abnormal concentrations of chemicals in the urine may disclose poor kidney function or exposure to toxins or drugs. Several lists have been developed of tests to distinguish among different conditions causing symptoms of dementia (see table 3-2); most include several blood tests and at least one brain imaging technique (discussed later in this section). No single standard protocol exists, however, because of both the variation among patients and disagreement about the usefulness of some tests. The utility of any one type of test may be uncertain, and its use may then vary from place to place. Tests also vary in expense, risk, and discomfort for the patient. obtaining a sample of cerebrospinal fluid, for example, requires entering the sac that encloses the spinal column in a procedure called lumbar puncture. Tests of CSF can reveal syphilis of the nervous system, evidence of bleeding, or ongoing infection (323). The test is relatively expensive ($381 in one study), carries a small risk for the patient, often causes discomfort, and picks up relatively a few diseases compared with the number of patients tested (17, 130). Several authors have concluded that lumbar puncture should not be done unless a brain infection is suspected or the patient is under age 55 (17,130,201); other authors include the procedure in their recommendations (84,314,323). The debate about performing the lumbar puncture on all pa63-218 0 87 4 QL : 3

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92 Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias Table 3=2-Selected Laboratory Tests To Diagnose Specific Diseases and Search for Reversible Cause of Dementia Test Diseases suggested by test results Blood count Pernicious anemia, infection Sedimentation rate Immune disorders Electrolytes, glucose, calcium, liver, Clue to metabolic etiologies, liver disease, kidney disease and renal function tests Urinalysis Kidney disease Syphilis serology (VDRL, etc.) Syphilis Vitamin B, Bo, vitamin B12~, folate Vitamin deficiencies, pernicious anemia Thyroid and adrenal function tests Hypeor hyparthyroidism; Cushings disease, Addisons disease (TSH, T4, T3, resin uptake, cortisol) CT or MRI Normal pressure hydrocephalus, stroke, vascular disease, tumor Lumbar puncture Syphilis, cryptococcus, brain hemorrhage, other infection of the brain EEG Seizure disorder, transmissible dementia Special Studies (When Appropriate): RISA study Hydrochephalus, when other studies or history suggest possibility of that disease Toxic screen including heavy metals Environmental or occupational exposure; poisoning SOURCES: Adapted from P.V. Rabins, Reversible Dementia and the Misdiagnosis of Damentia, Hosp/ts/ and Corrrrnun/ty Psych/Wy 34: S30-S35, 19S3; and K.L. Tyier and H.R. Tyier, Differentiating Organic Dementia GerWr/cs 39:-52, March 19S4. tients with dementia thus continues, and different articles about diagnostic procedures include the test, exclude it, or list it as optional (5,30)84,165) 171,253,314). Lumbar puncture could rapidly become routine if a specific CSF test for Alzheimers disease became available. Several of the promising new tests do require CSF samples at present. Physicians may thus be unsure of the proper course of testing, and their uncertainty will not diminish until more studies indicate the appropriateness or lack of utility of lumbar puncture. Similar uncertainties are associated with many other diagnostic tests. A consensus on essential versus nonessential tests can only result from clinical trials that demonstrate a particular tests utility. The need for practicing physicians to know what tests to perform is one of the important drives behind clinical research. The rate at which diagnostic and treatment controversies are resolved depends, therefore, on continued funding of clinical research. Investigators hold great hope for significant advances in the laboratory diagnosis of disorders causing dementia. Many researchers are now attempting to identify biological markers of Alzheimers disease, for example, that would vastly simplify its diagnosis (308). Alzheimers disease can now only be confirmed if tissue from the patients brain can be directly inspected under the microscope, so clinical diagnosis proceeds by elimination of other possible explanations of dementia in a patient with a history of symptoms applicable to several disorders. Specific tests of blood, CSF, and other more accessible tissues that could reliably identify patients with Alzheimers disease or its subtypes would be highly desirable. The search for specific laboratory markers is promising, but there is no evidence yet that it will be successful. One group recently found a soluble protein that is found at much higher levels in brains of patients with Alzheimers disease than in brains of controls (336). Another group reports loss of an enzyme in patients with Alzheimers disease (77). Some scientists have found biochemical aberrations in the blood cells of patients with Alzheimers disease, but the diagnostic usefulness of the findings has not been established (32). Cells grown in culture after removal from patients with Alzheimers disease have demonstrated abnormalities of glucose metabolism (292). Irregularities that might be detected in the chemistry of CSF have also been found (111,313); but their presence has either not been confirmed by later investigators or cannot be detected by routine methods early enough in the illness to be diagnostically useful. Recent studies have demonstrated chemical imbalances that might be detected relatively early in the disease (99), but diagnostic tests based on these findings have not yet been devised. If a protein can be found in spinal fluid or blood that is not associated with other diseases, its detection would permit a specific diagnostic test for

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Ch. 3The Diseases: Diagnosis, Treatment, and Scientific Background l 93 Alzheimers disease. That would revolutionize the diagnosis of dementias in general. For those cases of Alzheimers disease that clearly run in families, it may be possible to develop a direct test of DNA analogous to that under development for Huntingtons disease (126,325, 326). An association of Alzheimers disease with an unusual gene for an immunological blood protein (C4) has been shown in one study (234), but its specificity to Alzheimers disease and its diagnostic importance have not been established. Other genetic tests either are nonspecific or have not yielded consistent results to different investigators (308). Several scientific groups are developing antibodies against abnormal brain proteins found in those with Alzheimers disease (83,123,321)336,342), but, again, the antibodies have yet not been used as diagnostic tools, either alone or in combination with brain imaging techniques. psychological Tests Psychological tests are used to screen for the presence of dementia (e.g., to distinguish depression from dementia), to follow up on initial findings, and to differentiate among the disorders causing dementia (e.g., to distinguish Huntingtons from Alzheimers disease). Short screening tests, called mental status tests, can be used by physicians, nurses, or other health professionals to estimate changes in global intellectual performance (33,74,90,97,124,128,158, 162,169,170,204,243, 24-4,260) 261,269)270,302,3 19); they are discussed at some length in chapter 8, and only their role in diagnosis will be covered here. Different tests either measure specific mental functions or briefly survey those functions deemed most likely to be diagnostically decisive. Most of the tests developed over the past two decades have focused on questions and tasks that can be performed at the bedside in a relatively short time. The two tests most commonly used correlate well with each other among patients with Alzheimers disease, and a formula to convert scores has been developed (307). Screening tests are judged most likely to be useful in routine practice, but generally are not sensitive to detection of mild dementia, and cannot differentiate among patients with severe dementia. They are thus useful mainly for preliminary identification of symptoms, and can be followed up by more elaborate and specific tests. More extensive tests of mental functions can be used to refine analysis of the clinical features. Extensive psychological testing can take several days and involve batteries of specific tests. Their use varies from place to place, but a panel of experts recently listed a number of specific tests found useful in the clinical diagnosis of Alzheimers disease and dementia (212, table 2 and pp. 941-942). Psychological tests are used primarily to confirm diagnoses that are already suspected, but they sometimes serve to distinguish among different diseases (224). The tests are intended to assess the functions performed by different parts of the brain (e.g., memory, calculation, knowledge of place and time, attention, understanding, and language use). These must be used carefully, because they can be influenced by a patients educational background or socioeconomic status, but they are often successful in separating impairments of memory, for example, from those influencing perception or language. In addition, they are important in distinguishing disease from the effects of aging. Psychological tests are essential to track the effects of experimental treatments, to trace the rate of deterioration of mental function, and to study subtypes of heterogeneous disorders like Alzheimers disease. They are also useful for following the stages of illness in a group of patients and in the care of an individual over time. Variations on psychological tests may help identify need for service or measure fair payment to caregivers, but their use for these purposes introduces complexities such as examiners vulnerability to deliberately being fooled. The tribulations of using psychological tests for assessment of the type and amount of care a patient needs are dealt with in chapter 8. Finally, psychological tests are important for indicating not only what is wrong, but also what functions are preserved. Knowledge of spared functions can assist family members or other caregivers in dealing with a patient.

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94 Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias Brain Imaging All commentators agree that brain imaging is an essential component in the diagnosis of dementia, but the technique used depends on local availability and rapidly changing medical standards. Several methods for directly assessing the anatomy of the brain have been developed in the last two decades. The most powerful new technologies use computer analysis to create images of the brain. The differences among the techniques stem from the type of measurement used to generate data for the computer. CT Scanning-Computerized axial tomographic (CT) scanning is an extension of traditional X-ray diagnostic testing. CT scanning uses the same type of energy, X-radiation, as used for chest or skeletal x-rays, but the computer processes the information in a way that permits analysis of the internal anatomy of the head, including the brain. CT scanning machines are available in most major hospitals and many other clinical centers now, and the procedure is routinely used in most investigations of dementia. It can be useful by specifically detecting some causes of dementia, such as tumors or enlarged ventricles suggesting hydrocephalus or strokes in some locations of the brain. CT has also been used to study Alzheimers disease and assess patient prognosis (1)61,80,85). Applied to Alzheimers disease, CT scanning has been more helpful to date in establishing averages for Alzheimer patients compared with normal individuals than in differentiating Alzheimers disease from other dementias. PET Scanning. -Positron emission tomography (PET) relies on computer analysis similar to that used in CT scanning, but the machine detects positrons (electrons that have a positive rather than a negative electric charge) rather than X-rays. PET scanning works by injecting chemicals that radiate positrons. By using carefully chosen positron-emitting chemicals, the technique allows investigation of the brain in actionanalysis of the physiology of the brain displayed in threedimensional splendor. Injection of chemicals that closely resemble glucose, for example, reveals how fast the cellular fuel is taken into cells. That technique provides a rough measure of how actively nerve cells are firing in particular anatomic regions, which in turn gives clues about the functions of large groups of nerve cells in the brain. Several different causes of dementia reveal distinctive features in the PET scanner. Patients with Huntingtons disease, for example, show lower glucose intake in the caudate nucleus, a group of cells known to be lost during the course of the disease (133,177). Several studies of Alzheimers disease have also shown characteristic abnormalities in specific regions of the cerebral temporal cortex (55 and others cited therein, 75,76,86,92,98,102, 208,227). The PET scanner is a fascinating and highly useful research tool, but it has several drawbacks that will prevent it from becoming a part of routine diagnosis soon. The major constraint is its dependence on availability of a nearby cyclotron (atom smasher). The chemicals that emit positrons must be made in such a machine, and they release positrons only for a relatively short time (minutes to hours). Cyclotrons are not available in most communities, and they are extremely expensive to construct. The combination of time and expense involved in setting up a PET scanning facility thus precludes its general applicability. Some of the advantages of functional imaging available using the PET scanner might be developed for other imaging techniques, however. The special chemicals used in PET scanning might well have functional analogs that could be detected using brain scanning machinery available in major hospitals or adapted for magnetic resonance scanners, which are becoming more widely available.. SPECT Scanning. -Single photon emission computed tomography (SPECT) is another method for indirectly measuring physiological activity. It has been called the poor mans PET scan because it may eventually be able to perform many of the functions now only available through PET although with diminished precision and resolution (163). The technique uses radiation detection machines available in hospitals with nuclear medicine departments, SPECT is likely to be useful in detecting strokes, hemorrhage, and areas of poor blood circulation to the brain (60). A few studies have shown diminished blood flow to the lateral regions of the cerebral hemispheres

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Ch. 3The Diseases: Diagnosis, Treatment, and Scientific Background l 95 in Alzheimers disease similar to the pattern found with PET (288). Patients with multi-infarct dementia and Picks disease have also been studied (59, 146,322). One study used SPECT to detect the binding of specific chemicals known to be lost in Alzheimers disease and was able to distinguish Alzheimer patients from controls (147). It is not yet clear whether SPECT will be widely useful in the diagnosis of dementia. Although less expensive than PET scanning, SPECT is nonetheless costly and may not prove more useful than other diagnostic procedures (163). MRI Scanning. Magnetic resonance imaging (MRI) is a new technology for making images of the brain and other parts of the body (315). The technique depends on detection of a phenomenon called nuclear magnetic resonance (NMR), and is also sometimes called NMR scanning. The nuclei of some atoms in the body are composed of odd numbers of nuclear particles. (Most atoms are stable only with an even number of nuclear particles.) Such nuclei can be detected by sending weak energy signals through very strong magnetic fields. The MRI machine consists of a set of powerful magnets and a source of energy in the same general range used for broadcasting radio. The radio signal is affected in predictable ways by the number of odd-numbered nuclei in its path, The most common element with an odd number of nuclei is hydrogen, and water is the molecule most frequently associated with hydrogen in the body. In its usual application, therefore, MRI produces a map of the water content of various tissues in the body. (It can also be used for other, more specialized purposes, but they are not relevant to this discussion.) MRI has several advantages and disadvantages. The biggest advantage is that it does not involve high-energy radiation such as X-rays, and its potential adverse effects are thus judged to be minimal. MRI also gives better images of the difference between the white and gray matter of the brain than CT scanning (differentiating cell-rich from cell-poor areas). The disadvantages include its current exclusion from use in patients who have artificial heart valves or limb prostheses that might be affected by the strong magnetic fields. MRI machines are also more expensive than CT scanners, are available only at a few large hospitals, and are being acquired at a slower rate than CT scanners (299)315). Magnetic resonance imaging can, in principle, be used for most of the same purposes as CT scanning, with the added benefit of higher resolution and ability to better differentiate subregions in the brain. For detecting strokes, and perhaps tumors, MRI maybe more sensitive (103). Preliminary studies report that MRI can distinguish dementia caused by Alzheimers disease from multiinfarct dementia (20). MRI could theoretically supplant CT scanning in assessing the fluid-filled cavities in the brain and in measuring brain tissue density. One study compared the cost-effectiveness of CT scanning to MRI scanning in evaluating dementia. It found that MRI was significantly more expensive, but not a great deal more sensitive at picking up surgically correctable lesions in the brain (normal pressure hydrocephalus, blood clots, and tumors) (291). The validity of the studys results depends crucially on two factors: the prevalence of such surgically correctable causes of dementia (for which there are widely divergent estimates) and whether applications of MRI not included in the study are important. Many MRI studies are being performed to detect vascular dementia, for example, but the benefits of such use were not assessed in the study. Omitting this analysis is justified in the absence of a widely accepted treatment for vascular dementias. Consensus on optimally effective treatment of vascular dementia would likely enhance the importance of MRI as a diagnostic tool. Finally, MRI might be useful in the future for functional imaging of a type possible now only with the PET scanner. This would presuppose the development of chemicals containing nuclei that could both be detected by the MRI machine and be used in cellular metabolism. Such developments would permit the great benefits of PET scanning without the prohibitive cost and constraints of proximity to a cyclotron. Examination of Brain Tissue A final diagnosis of Alzheimers disease, Picks disease, and many other disorders causing dementia can be made only if tissue from a patients brain

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96 l Losing a Mi//ion Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias is directly examined under the microscope. Tissue can be obtained either at autopsy or by taking a sample of the brain of a living patient (a biopsy). (The characteristics that define th e microscopic appearance of brain tissue for each disease are described in the next section.) Brain biopsy is not a routine clinical practice because of its invasiveness and high cost. It can be performed specifically for diagnostic purposes when entering the skull for some other reason. Although recent studies suggest that the risk of biopsy is relatively lowwith complications of less than 5 percent (231) and mortality under 1 percent (163)it requires a major operation, and its findings do not usually influence therapy. A major breakthrough in treatment, however, might well provide incentive for more frequent biopsy diagnosis (163). For now, biopsy is restricted to research centers and hospitals engaged in implanting drug delivery devices. The low frequency of biopsy means that the specific disease causing dementia in a particular patient is often uncertain until death. Indeed, uncertainty often prevails even after death because many patients are not autopsied. (The autopsy rate in the United States is now 14 percent, down from 50 percent at the turn of the century (211,215)). Determining Which Tests To Use The serious problem of misdiagnosis of irreversible dementia has led to several multidisciplinary conferences on the diagnostic approach to be followed. The National Institute on Aging (NIA) held a conference in December 1983 (166), and the National Institute of Neurological and Communicative Disorders and Stroke (NINCDS) and the Alzheimers Disease and Related Disorders Association (ADRDA) cosponsored a widely reported conference (212). The American Medical Association (AMA) also recently reviewed the diagnosis of dementia, although the AMA document does not prescribe a diagnostic protocol (5). All of these are in addition to a large number of diagnostic strategies promulgated in textbooks of neurology and psychiatry. Different physicians and other health professionals use the terms Alzheimers disease, dementia, and multi-infarct dementia in different ways. The greatest confusion arises in defining Alzheimers disease, because the diagnosis can be made only by excluding other illnesses (26). These conferences have not yet yielded a uniform diagnostic approach, and any such algorithm would be expected to change rapidly as more is discovered about the different diseases. For now, the criteria promulgated at the NIA and NINCDSADRDA conferences appear to be the best available for Alzheimers disease, combined with the American Psychiatric Associations Diagnostic and Statistical Manual criteria for the presence of dementia and specific diagnosis of multi-infarct dementia (7) (see table 3-3). Lists of criteria, however, do not specify the tests to be performed, so the performance and interpretation of tests will probably remain varied among physicians. In one study of laboratory tests used in the diagnosis of dementia, the cost per patient depended primarily on the strategy used Table 3-3.Diagnostic Criteria for Dementia Criterion DSM-III ADRDA/NINCDS NIA/AMA Memory deficit . . . . . . . . . . . . . . . + + + Loss of intellectual function confirmed by mental status test. . . . . . + + + Impaired social or work functions . . . . . . . . . . . + Impairment of additional cognitive functions (language, construction, personality, etc.) . . . . . . . . . . . . . . . . . + +/ + State of consciousness not impaired (alert and awake). . . . . . . + + + Evidence of brain damage (organic cause). . . . . . . . . . + KEY: + Required for diagnosis. +/ Suggestive of but not required for diagnosis. DSM-111 = DiWnostlc and Statistical Manual of Mental Disorders, 3d ed. ADRDA/NINCDS = Alzheimers Disesee and Related Disorders Association, Inc./National Institute of Neurological and Communicative Disorders and Stroke. NIA/AMA National Institute on Aging/American Medical Association. SOURCES: American Paychiatrtc Association, fllagnostlc and Stat/st/ca/ &farrua/ of Mental Dkorr/ers, 3d ad. (Washington, DC: 1980); G. McKhann, D. Drschman, M. Folatein, et at., Clinical Diagnosis of Alzheimers Disease, Neurology 34:939-944, 19S4; National Institute on Aging, Task Force Report, Senility Reconsidered. Treatment Possibilities for Mental Impairment in the Eiderly, Journal of the American Medcal Assodatlon 244:259-263, 19S0.

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Ch. 3The Diseases: Diagnosis, Treatment, and Scientific Background l 97 to order tests. There were tradeoffs-some minor slowly through large numbers of clinical investiproblems would be missed by the less costly stratgations, medical textbooks, journal articles, and egies. The range of costs per patient was large, health professional conferences. Rigorous studies from $153.92 to $1,109.50 [182). The optimal diagof comparative costs and benefits of different diagnostic algorithm for dementia is likely to be as nostic approaches will, however, permit both elusive as for other syndromes. Diagnostic procgreater certainty of diagnosis and more efficient esses will defy unanimity and become established delivery of care. CHARACTERISTICS OF SPECIFIC DISEASES This section describes briefly some of the major disorders that cause dementia, emphasizing those that are most common or have yielded most to scientific inquiry. Alzheimers disease, which accounts for the majority of cases of dementia among the U.S. population, is the focus of most discussion because so little is known about its cause, prevention, or treatment. This discussion is followed by descriptions of multi-infarct dementia (the second most common cause of dementia) and other disorders that are scientifically or clinically instructive. The final part of this section considers disorders that may provide important scientific insights, present prospects for future research, or threaten to grow in magnitude and thus act as new sources of demand for long-term care. Alzheimers Disease Alzheimers disease refers to the disease process occurring in a patient who shows both the clinical symptoms of dementia and the characteristic microscopic changes in the brain. The clinical diagnosis is made on the basis of finding typical symptoms that progress over time and by eliminating other possible diagnoses that could explain those symptoms. (The symptoms have been described in the preceding section, and also in chs. 2 and 8.) Symptoms are only part of the picture, however; the definitive diagnosis of Alzheimers disease requires biopsy or autopsy examination of brain tissue. Microscopic Changes Alois Alzheimer first noted microscopic changes that occurred in the brain of a woman patient with clinical dementia in 1906, and the following year he reported this first case of the disease that bears his name (2). The findings he described are still those used to make the diagnosis of Alzheimers disease, although the microscopic features that define the disease continue to be refined (193). The significance of the abnormal findings in Alzheimers disease can best be understood by describing some aspects of the organization of the human brain. The brain is organized differently from other organs in several ways. It consists of at least IO billion nerve cells, with 10 times as many supporting cells. The nerve cells are connected to each other, each connecting with hundreds or thousands of other nerve cells. Scientists have made significant progress in understanding the complex organization of the brain over the past decade, although what they do not know still overwhelms what they do. The relationship between disrupted brain cell organization and certain disorders is becoming clearer, and Alzheimers disease is one such disorder. Anatomy of Abnormal Changes.Death of nerve cells occurs in several locations in brains of patients with Alzheimers disease. Pathologists have long noted a loss of cells from parts of the brain called the cerebral cortex (constituting the outer layers of nerve cells covering the brain) and the hippocampus (a large, curved aggregation of nerve cells near the underside of the brain). The abnormal microscopic findings are found both within nerve cells and between cells (near specialized junctions with other cells). The locations of the microscopic abnormalities appear to correspond roughly to the distribution of cells that use the chemical acetylcholine for cell-to-cell communication (see following discussion).

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98 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias More recently, investigators have found that nerve cells are lost from a number of brain regions in Alzheimers disease. Loss of nerve cells from one group, called the nucleus basalis of Mey nert (10,279,329), is thought to be especially relevant. These cells are believed to be part of a circuit of nerve cells that communicate with one another and are involved in the physiological processes that perform memory and other complex brain functions (7o). The loss of the nerve cells in the nucleus basalis is increasingly believed to be an important feature of Alzheimers disease. The nerve cells of the nucleus basalis connect to the two areas where the microscopic changes, Alois Alzheimer originally noted, take place: the cerebral cortex and the hippocampus. The parts of the hippocampus that are destroyed in Alzheimers disease are those generally thought to be involved in memory (149). Some researchers have even suggested that symptoms of the disease could be explained by the lesions in the hippocampus alone (13), although there is disagreement on this point (62). Recent advances in identifying specific hippocampal cells lost in Alz heimers disease may further elucidate their role in causing symptoms (199). Types of Microscopic Changes.Two patterns of microscopic change are generally used to make the diagnosis of Alzheimers disease. The first consists of an aggregation of abnormal filamentous proteins in nerve cells called neurofibrillary tangles (22o), which do not dissolve in solvents that dissolve most other proteins (65,285), although they have recently been dissolved in special solvents (151,284,285). Neurofibrillary tangles are not the same as normal fiberlike proteins found in nerve cells (150), although they share some features with proteins involved in maintaining the cells shape (174). Neurofibrillary tangles are not found exclusively in Alzheimers disease, but are also found in several other diseases, and the relationship of tangles to other microscopic abnormalities typical of some other diseases is not yet clear (114). The second type of change is found in the area between cells, near the points of contact at which a nerve cell receives signals from other cells. These abnormal clusters of proteins and associated components are called senile plaques or neuritic plaques. Neurofibrillary tangles and senile plaques look quite different under the microscope, and their relation to one another is uncertain. Some studies suggest that they may be aggregates of similar types of protein (168), but preliminary characterizations of the protein components suggest significant biochemical differences (285). It also appears that the disease processes that have been known for years to affect the cortex and hippocampus are quite similar to those that affect cells in the nucleus basalis (279), suggesting that analogous processes may be taking place in many different parts of the brain. Several other changes in the brain are often found in Alzheimers disease, called granulovacuolar bodies, Lewy bodies, and Hirano bodies (248), but these are not generally used to identify patients with Alzheimers disease, and may even suggest involvement of another disease (e.g., Parkinsons). Neurofibrillary tangles and senile plaques are not found exclusively in the brains of patients with Alzheimers disease. Both are found in most people as they age (33). One investigator found plaques or tangles in almost three-fourths of patients age 55 to 64 who did not have dementia (318). That may confuse those trying to understand the difference between normal aging and Alzheimers disease, but the confusion is warranted only in a minority of cases. In most patients with this type of dementia, the plaques and tangles are found in dramatically increased numbers and their profusion is concentrated in the regions of the hippocampus and certain parts of the cerebral cortex (247,248). In aging patients who do not have dementia, the plaques and tangles are much less frequent and are dispersed, Physicians do occasionally encounter patients in whom there are mild symptoms of dementia combined with autopsy findings showing an intermediate number and distribution of plaques and tangles. It is difficult to be certain whether these individuals had Alzheimers disease, but such patients are exceptions, rather than the norm.

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Ch. 3The Diseases: Diagnosis, Treatment, and Scientific Background 99 Photo credit: Office of Technology Assessment Microscopic appearance of senile plaques, taken of brain tissue from the cerebral cortex of a 60-year-old woman with Alzheimers disease of over 10 years duration. The photo is taken at 100x magnification of tissue stained with a silvercontaining dye that binds to the abnormal material associated with senile plaques. The plaques are dark areas dispersed throughout the photograph.

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100 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias Heterogeneity of Aizheimers Disease Alzheimers disease is primarily defined by its clinical symptoms and microscopic changes. It is quite likely, however, that this combination of clinical and microscopic findings actually refers to a group of disorders, each with possibly different causes. Researchers in recent years have increasingly focused on identifying subtypes of patients with clinically diagnosed Alzheimers disease. A consensus is beginning to form that there are several types (35,118,205,286). Several different findings have been suggested as defining important subtypes: familial aggregation (presence of many cases in one family); disturbance of reading, writing, and speaking ability; age at onset of symptoms; presence of uncontrollable abnormal movements; and severe personality disorders and psychoses. Patients showing the brain changes typical of Alzheimers disease can have a wide variety of symptoms (232). Investigators have found younger patients to have more severe cognitive deterioration (205), more severe behavioral disruption (14), and more severe disturbance of language use (56). Several other features differentiate early from lateonset cases. Younger patients have poorer results on psychological tests (190). They also show degeneration of additional groups of brain cells (36) and more circuits of nerve cells (272). PET scanning devices have been reported to detect differences between patients who develop the disease at younger ages and those who first show symptoms when older (175). These differences may be due to the illness lasting longer for patients with younger age of onset (investigators could be measuring duration rather than finding real biological differences). The most recent studies have attempted to assess that issue and have concluded that there are differences in the disease process itself, rather than merely in stage of illness when patients are studied. Other variants may be due to atypical presentations whose cause and relationship to more typical cases are unclear (289). Despite all the suggestions that there may be distinct subtypes of Alzheimers disease, no single way of defining such groups has emerged, and conflicts between the different studies of subgroups must be resolved before the categories are widely accepted (156). The diagnosis of Alzheimers disease may thus be refined over the next several decades, as subtypes are better defined and their characteristics are codified into diagnostic practice. In the meantime, it is likely that work being done on patients with Alzheimers disease is focused on a diverse group of disorders with different causes. The treatment and prevention of the illness will likely depend on identifying specific causes and characteristics that differ for the various subgroups. This dependence of new treatments and preventive strategies on understanding the etiology and biological processes of the disease reinforces the importance of finding the cause or causes of Alz heimers disease. Possible Causes of Alzheimer's Disease Scientists have not identified a cause of Alzheimers disease. But various hypotheses have been supported by different amounts and quality of supporting data. There is substantial evidence for some ideas (e.g., the loss of some chemicals used in nerve cell communication and the existence of familial clustering), while others are primarily working hypotheses. (For an overview about the possible causes, see ref. 338, or one of the books on the topic written for the lay audience: see refs. 57a,141,191). A recent scientific review is also available in Neuroscience (246). The possible causes of Alzheimers disease can be roughly divided into several groups. The groups overlap extensively, and one cause does not preclude others. They may even be directly linked. The disruption of nerve cell circuits often cited as a potential cause does not explain why the nerve cells die. Complete understanding of the etiology will thus need to elucidate the sequence of events that lead to the expression of disease, and is likely to involve many steps. The loss of specific nerve cells is not, for example, incompatible with the

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Ch. 3The Diseases: Diagnosis, Treatment, and Scientific Background l 101 role of genetic factors, infectious agents, or environmental exposures that might explain why the cells die. One way of grouping possible causes is: l l l l l l genetic factors (e.g., familial aggregation, association with Downs syndrome, and altered DNA-binding proteins); exaggerated aging (i.e., the severe form of a normal process-discussed in ch. 2); environmental factors (e.g., metal exposures, head trauma, viruses, and other infectious agents); immunologic factors (e.g., special susceptibility to infectious agents or proclivity for reacting against ones own brain cells); disrupted nerve cell circuits (including loss of specific populations of nerve cells and disruption of communication between certain groups of brain cells), which is a causal hypothesis that would require a further explanation for cell death; and intrinsic metabolic factors (e.g., disruption of biochemical pathways in brain cells or in different types of cells throughout the body, disturbance of protein transport in nerve cells, and changes in cell membranes), which would also require a further explanation of why certain factors were lost. Genetic Factors.-One of the questions about Alzheimers disease most often asked of physicians and other health professionals is: Is it genetic? This is a common fear among relatives of affected patients. Unfortunately, the answer is not simple. Clearly in some families Alzheimers disease appears in a way that looks very much like a genetic trait. When a pattern suggests an inherited trait, the disease is called familial Alzheimers disease. The largest such family discovered so far, spanning seven generations, was reported in 1983 (233), and more than 100 smaller families had been reported in various medical journals (63,64,296). In familial Alzheimers disease, the children of an affected parent have been found to have a 5050 chance of having the putative gene that leads to the disease (although a person carrying the disease gene may die before showing symptoms). The chances of eventually developing the disease are high if a person carries the gene and lives past age 85. This pattern of inheritance is called autosomal dominant transmission by medical geneticists, and it suggests that the presence of a single gene confers predisposition to Alzheimers disease in such families. Although there is no longer any doubt that some families are affected by Alzheimers disease in a way that suggests a single gene trait, substantial disagreement exists on how many cases of Alzheimers disease can be traced to genetic factors and whether there is only one genetic form. Some researchers have found that early onset cases (beginning before age 65) are more likely to be familial than late-onset (337), but this has not been confirmed by all investigators (56). If genetic and nonfamilial forms exist, what can families be told about their genetic risks? One physician who has studied families with Alzheimers disease extensively has developed a way to calculate risks (141, app. C) and suggests that a case is most likely to be genetic if it begins before age 65 and if there are two or more immediate relatives also affected (139). If the case is of the genetic form, then the risk to the patients children depends on the age at which the disease began later onset means lower risk to children. Some investigators have suggested that disturbance of language function might predict familial occurrence (38,40)96), but others have reported just the opposite (171). One group has constructed a mathematical model based on preliminary clinical studies. The model suggests that a single gene may predispose to Alzheimers disease among patients with a specific set of clinical symptoms (41,42). The model also suggests that all such cases may be genetic, and account for 78 percent of all cases of Alzheimers disease. Many if not most people who develop Alzheimers disease do not have relatives who are also affected. This evidence has been offered to suggest that fewer than a third of cases are genetic, but the data cannot be so simply interpreted. Most studies exclude investigation of cases over a certain age (often 69 or 79) because of the unreliable nature of medical information available about very old individuals. Yet such exclusion can unduly diminish the reported number of cases in relatives, particularly since Alzheimers disease becomes increasingly common with age and is highly

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102 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias prevalent only among those over 80. Any age cutoff thus precludes investigation of the group most likely to be informative. A definitive answer about the prevalence of familial versus nonfamilial Alz heimers disease thus awaits rigorous study of large families with longitudinal investigation of all patients into advanced old age. Because of these uncertainties, the relative number of genetic and nonfamilial cases of Alzheimers disease is difficult to estimate. Recent studies have shown familial rates as low as 25 percent (142), but most show higher familial prevalence (40,96, 140)312). One statistical analysis of patients with Alzheimers disease estimated that over half of all cases may be of the genetic form (40,96), but this has not been uniformly accepted (258). Some confusion over the conflicting studies is due to the unusual genetic characteristics of Alzheimers disease in affected families: Because of its late manifestation this trait should appear in only about one-third of predisposed individuals (39). when life expectancy is age 70 to 75, two-thirds of the people carrying the postulated Alzheimers gene will die before they show symptoms, and only one-third would develop the disease. The child of an affected patient would thus stand a one in six chance of developing Alzheimers disease. Yet life expectancy is rapidly increasing, especially among older age groups in the United States, and so the relative prevalence of the familial form of Alzheimers disease may well increase. In addition to the confusion caused by the delayed onset of Alzheimers disease in affected families, many other uncertainties surround the prevalence and special characteristics of the genetic form of Alzheimers disease. Some of these uncertainties are due to different scientists studying relatively small groups of patients that differ from one medical center to another. Other differences arise from varying measurement techniques for assessing the type, severity, and clinical characteristics of dementia in the studies. There may even be more than one genetic form of Alzheimers disease (308). The presence or absence of a single gene that predisposes people to developing Alzheimers disease does not imply that other factors do not also play a role. The delay in onset of the disease caused by the postulated gene is difficult to explain, although this is also true of another genetic disease, Huntingtons disease (discussed later). Other factors, including all other possible causes discussed in this section, could also play a role in the genetic form of Alzheimers disease. Uncertainty about the familial form of Alzheimers disease should be resolved as soon as possible because of the importance of such information in counseling families. Some families are clearly affected by a familial form of the disease, and others are clearly affected by a form that is not primarily genetic. Many families, however, do not have enough information about their relatives to be sure whether the disease is genetic or not, and it is these people who most need guidance. Environmental Factors.Several scientists have attempted to identify personal or dietary habits, drug use, environmental toxins, or infectious agents that might cause Alzheimers disease. Epidemiologic surveys of large numbers of patients have looked at many factors. One factor found by many studies is association with previous trauma to the head (100,143,223,340 citing 3)4). The age of the mother at birth of the affected patient, higher prevalence of thyroid disease, and risk of Downs syndrome in relatives have been reported by a few studies but not most; even the association with head trauma is not found in all studies (4,266). The association of Alzheimers disease with prior head trauma may simply be due to the family members being more likely to remember a head injury for a patient with Alzheimers disease than if the patient did not later develop the disease. Careful analysis of the data suggests this is unlikely, however (101,264). There are other reasons to suspect that the association of Alzheimers disease with head trauma may be more than mere coincidence, First, the association has been uncovered in three independent studies that did not have other findings in common. Second, there have been several reports of individuals with severe head trauma who have subsequently (after years) developed Alzheimers disease (reviewed in ref. 277). Third, the pathological changes that take place in Alzheimers disease resemble those that have long been known to take place in boxers

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Ch. 3The Diseases: Diagnosis, Treatment, and Scientific Background 103 who live to old age. Most boxers sustain repeated and severe head trauma as part of their sport; the knockout is, after all, a form of concussion in which the brain temporarily fails to function normally because of acute trauma. Many boxers who live to old age develop a clinical syndrome called dementia pugilistic (boxers dementia) that includes tangles in the cerebral cortex and elsewhere (66,72). Dementia pugilistic has traditionally been classified separately from Alzheimers disease because its cause is known, additional anatomical changes characteristic of previous trauma are usually absent in Alzheimers disease, and the distribution of neurofibrillary tangles is not identical to that found in Alzheimers disease. The evidence is equivocal at present, and the concept of head trauma causing Alzheimers disease is controversial (277), but investigators are now reexamining the association to see if head trauma might not be a cause of Alzheimers disease. Viruses or other transmissible dementia agents have also been suggested as causes of Alzheimers disease. Several disorders that cause dementia are known to be caused by viruses or unusual agents. The hypothesis that Alzheimers disease might be caused by infection is based on such clinical associations, combined with additional scientific evidence. Plaques from patients with Alzheimers disease are sometimes similar to those found in the animal disease scrapie, which is known to be infectious (268). Some patients also develop microscopic plaques in a part of the brain often affected in kuru, a transmissible human dementia (106,250). The relationship between Alzheimers disease and transmissible dementia is puzzling. Kuru is just one of several dementing conditions caused by an unusual group of slow-acting infectious agents unlike conventional viruses, bacteria, or other known microbes. Kuru was discovered on the island of New Guinea, where it was propagated by ritual cannibalism of those who died (106). Creutzfeldt-Jakob disease and GerstmannStrassler syndrome are two other dementing conditions caused by similar agents. The scientific work that elucidated the infectious cause and unusual characteristics of the agents causing kuru and Creutzfeldt-Jakob disease earned the 1976 Nobel Prize for Physiology and Medicine for D. Carleton Gajdusek. Subsequent work has noted several associations between the microscopic plaques and protein constituents thought to be part of the infectious agents that cause these diseasesscrapie, CreutzfeldtJakob disease, Gerstmann-Strassler syndrome, and kuru (107,251,252,294). A gene whose expression is increased in mice infected with scrapie also binds to senile plaques of patients with Alzheimers disease, providing another tantalizing association of unknown significance (332). Familial Alzheimers disease was initially reported to be infectiously transmitted to primates, but these reports have not been replicated despite numerous attempts (44,120). Finally, some have questioned the evidence for the chemical similarity of Alzheimers disease changes and the plaques associated with the unusual infectious disease scrapie (268). The hypothesis that unusual infectious agents cause Alzheimers disease thus remains an intriguing but unconfirmed speculation. It is also possible that a virus that acts in an unconventional way in some patients, causing a slow and insidious disease, may also cause Alzheimers disease. The evidence for this is based primarily on knowledge that several other diseases believed to be caused by viruses can also cause dementia (e.g., progressive multifocal leukoencephalopathy and subacute sclerosing panencephalitis). On the other hand, no viruses have ever been consistently associated with Alzheimers disease, despite extensive searches, and no immune reaction is found in the brains of patients with Alzheimers disease comparable to that found in other viral dementias. In summary, the possibility of a viral cause of Alzheimers disease cannot be either ruled out or definitely confirmed by existing studies. Several groups of scientists have found that the abnormal protein aggregations that make up plaques and tangles are also associated with high concentrations of aluminum and silicon. The elevation of silicon concentrations was first described in 1972 (11,235), and several groups found high aluminum content beginning in 1976 (71,241). The findings are not disputed, but their interpretation is not yet clear. Both aluminum and silicon are

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104 Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias very common elements in the Earths crust, and high exposure levels to dust containing both silicon and aluminum is normal. Recent studies have noted the association of aluminosilicates in damaged areas of the brain, and researchers postulate that these deposits are causing the alterations (50,51). Other studies show an association of several neurological diseases with aluminum deposition and trace mineral content in water supplies (234). Many Alzheimers disease researchers interpret the presence of aluminum and silicon as a result of cell death, rather than its cause. Their explanation is that the nerve cells die, or for some other reason insoluble abnormal protein aggregates begin to form in nerve cells and near nerve terminals. Aluminum and silicon, highly prone to forming insoluble complexes, then deposit on the protein moieties and are thereby concentrated. This explanation relegates the role of aluminum and silicon to a secondary and relatively unimportant function rather than serving as primary toxins. More work must be done, however, to determine whether silicon and aluminum deposition is a cause or a consequence of Alzheimers disease. Other metals may also play a role, particularly if absent from the diet. A disease process that resembles Alzheimers disease in some respects is found in Guam, some islands in Japan, and a few other Pacific islands. This disease has clinical and microscopic overlap with Parkinsons disease, amyotrophic lateral sclerosis (Lou Gehrigs disease), and Alzheimers disease. The factor common to each of these regions is a deficiency of calcium and magnesium in the water supply (107, 239). Immunologic Factors. -Defects in the immune system have also been proposed as working hypotheses in explaining Alzheimers disease. The involvement of the immune system theoretically could be independent of other factors, or could also involve infectious agents, genetic predisposition, or environmental toxins. Nerve cells share many surface features with cells of the immune system, and so might be affected by similar mechanisms (104,105). One study showed that the immune function of one type of cell-so-ailed T8+ suppressor lymphocytes-is lower in patients with Alzheimers disease than in control patients (293). Another showed diminished production of interleukin-1, a substance that stimulates immune cells, associated with Alzheimers disease (167). Antibodies of a particular type, called IgG, are specifically increased in some patients with Alzheimers disease (57,58,88,136). And a gene that controls a blood protein involved in immune function, factor C4B, has been associated with Alzheimers disease (234). However, the significance of these findings is not clear. Several investigators have failed to find any significant decline in immune function or specific lymphocyte function that is predictive of Alzheimers disease (136,155, 185)304). Disrupted Nerve Cell Circuits. -Researchers in the last decade have correlated Alzheimers disease with loss of specific groups of nerve cells and disrupted communication between nerve cells. Studies of the loss of cells in the nucleus basalis and hippocampus, noted earlier, are good examples of this work, but the story does not stop with the loss of nerve cells. Discovery of effects in the nucleus basalis and hippocampus was preceded by the work of several investigators who were studying cell -to-cell communication in the brains of patients who had died with Alzheimers disease or other disorders. Investigators in the United Kingdom noted that there was a dearth of protein that makes the chemical acetylcholine in some parts of the brains of patients with Alzheimers disease (reviewed in 16). The relative absence of acetylcholine suggested that the cells using it to communicate with other cells might be dying off. Other evidence suggested that such a defect might explain the loss of memory in Alzheimers disease (16)69), and researchers found that the cells lost from the nucleus basalis were a major source of acetylcholine for the cerebral cortex (69,329,330). Others were able to confirm that the nucleus basalis cells did indeed make acetylcholine (226), and transport it to the cortex (209). Taken together, the different studies began to present a coherent picture: Nerve cells that use acetylcholine were lost from the nucleus basalis and other areas, reducing the amount of acetylcholine released to cells in the cortex and hippocampus, and disrupting memory processes. The story is not so simple, however, because nerve cells that use acetylcholine are not the only

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Ch. 3The Diseases: Diagnosis, Treatment, and Scientific Background 105 ones lost in Alzheimers disease (245)295)) and cell loss is not strictly correlated with the use of acetylcholine as a chemical transmitter (219). Several other regions of the brain suffer loss of nerve cells (193). Nerve cells that use the chemicals serotonin (73), somatostatin (78,116,178,272,287) and corticotropin-releasing factor (22,81,93,303) are also lost. These discoveries represent a major advance in the understanding of Alzheimers disease, but there are lingering complexities, and much is left unexplained (246). Some cell groups lost in Alzheimers disease also die off in other disorders. Groups of cells that die off in some patients remain healthy in others (36,272), and different patients show contrasting patterns of cell loss and chemical defects (70,78). Some of the abnormal changes of Alzheimers disease can also be induced in nerve cells grown in tissue culture by adding two chemicalsaspartate and glutamatethat are believed to be naturally used to communicate between cells (79), and these chemicals are found diminished in brain regions of patients dying with Alzheimers disease (238,281). That finding suggests that cell communication involving these two chemicals may cause cell death in the brain, in addition to cells that use acetylcholine to communicate. Despite such evidence that other factors may be involved, the loss of acetylcholine does appear to be a consistent finding, affecting all subgroups (99). Some subgroups may have other defects in addition to the loss of cells that use acetylcholine. Scientists do not appear near a complete explanation of why Alzheimers disease occurs in some people and not others, or why only some cells die. Even if nerve cell circuits are involved, this provides only an intermediate explanation, and does not suggest an ultimate cause. Many questions remain unanswered. Are certain nerve cells genetically programmed to die in some people? Are they killed by viruses or toxins? Do they have specific biochemical or metabolic aberrations? Or are they mistakenly killed by the bodys own immune defenses? Intrinsic Metabolic Factors. -Several investigators have reported disrupted biochemical pathways and other metabolic abnormalities inpatients with Alzheimers disease. Enzymes are proteins that facilitate chemical reactions. Some researchers have found abnormal function of specific enzymes involved in sugar metabolism in brain cells (28,32,280), in patients cells grown in tissue culture (293), and in red blood cells (29). Others have found abnormalities of proteins that affect DNA or RNA, the genetic material of all cells. One group found that patients with Alzheimers disease had less RNA in their brains at autopsy, and they traced the defect to more rapid degradation of RNA. The amount of a protein that slows RNA degradation was abnormally low, and so release from normal inhibition led to accelerated decay of RNA (278). That defect would make it difficult for cells to produce normal amounts of protein, and it might explain other biochemical abnormalities or cause cells to be vulnerable to insults. The specific metabolic features of RNA metabolism in Alzheimers disease are still under study, and the results are not completely consistent from report to report (306). Other investigators have found slowed repair of DNA (189), increased sensitivity to damage of DNA (283), or changes in the proteins that stick to DNA (that might regulate which genes are turned on and off) (213)324). Another focus of study has been the cell membranethe thin layer of material that separates cells from one another and from body fluids. The cell membrane includes elements that determine its electrical properties (and the ability to transmit nerve cell impulses) and that allow other cells and proteins to recognize the cell from its exterior. Abnormalities of cell membranes could, therefore, have profound disrupting effects in nerve cell communication and recognition. Several researchers have produced preliminary evidence of such membrane changes (339,345). Nerve cells need contact with other nerve cells or muscle cells in order to survive. The exact requirements for nerve cell survival are not known, but likely include trophic factors carried back to the nerve cell. One hypothesis suggests that trophic factors specific to particular nerve cell populations are lost in Alzheimers disease, leading to loss of the nerve cells (8,9). Replacing the trophic factors might lead to partial clinical recovery or growth of new cells to replace those that are lost. This possibility of nerve cell regrowth has been

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106 l Losing a Million Minds: Confronting the Tragedy of Alzheimer's Disease and Other Dementias supported by finding that some cells in certain regions of the brain do proliferate in Alzheimers disease, but do not find their normal attachments (109). Recent studies of a protein called nerve growth factor (NGF) suggest that it may promote growth and sustenance of nerve cells that use acetylcholine in the nucleus basalis, and preliminary studies show improvement of learningimpaired rats in response to administration of NGF (reviewed in 198). Some investigators have suggested that the nerve cells that die off in Alzheimers disease do so because they cannot adequately move important structural proteins over long distances through the thin threadlike projections of the cell that conduct electrical impulses (107,121). These theories are based, in part, on the nature and location of abnormal protein aggregates (plaques and tangles) in the brain. Others interpret the location and composition of abnormal protein condensation as suggesting that proteins related to plaques and tangles accumulate around small blood vessels and impede the flow of oxygen and nutrients to nerve cells (112). That interpretation is supported by many reports of reduced metabolism in certain parts of the cortex of patients with Alzheimers disease, but this condition could also be found if cells died from other causes. Finally, the abnormal protein aggregates in tangles share some features with proteins that are involved in maintaining the cells shape (174). Summary .Many different causes of Alzheimers disease have been postulated, and others may be suggested. It appears likely that genetic factors are important in some cases. Infectious agents, head trauma, immune dysfunction, toxins, and metabolic aberrations may also be involved and are being investigated vigorously. Research on Alzheimers disease has become a priority only in the last decade, and the effort to track down a cause can succeed only with further work. That additional work will require substantial and sustained research support from Congress (see ch. 13). Issues in Treatment of Alzheimers Disease No fully effective treatments or means of preventing Alzheimers disease has been found. Although a few drugs can marginally alleviate some of the symptoms, the most effective way to manage patients is by adapting the environment to patient needs rather than prescribing a specific medical treatment. Medical options are limited, but much can be done to reduce the adverse impact of Alzheimers disease on patients, families, and others (328). A physician who makes a diagnosis of Alzheimers disease must also make several related determinations. The health and safety of patients, their families, and those who come in contact with patients can be influenced by these considerations. Several issues commonly confronted are whether the l l l l patient: should continue to drive, can retain his or her job (especially difficult for those in highly skilled positions that involve substantial responsibility for others or affect public safety), can make decisions about financial and legal matters, and is eligible for special disability or health programs. These determinations are not purely medical, but they involve a medical evaluation and assessment of the severity of illness. Physicians who care for a patient with dementia are therefore involved in these complex and difficult considerations (282). Correct determinations require understanding of the particular patient, the patients environment, the family structure, the availability of outside supports, and eligibility criteria for government programs. These nonmedical considerations become a part of patient management, although they are not commonly considered medical treatment. Other issues raised by the treatment of those with Alzheimers disease are more directly linked to medical care. Quackery .Diseases that are common, devastating, and incurable attract crank remedies. Hope and desperation conspire to create a market that is open ground for opportunism. Many diseases are subject to this phenomenon: cancer, acquired immune deficiency syndrome (AIDS), and arthritis, among others. Alzheimers disease, and many other dementing disorders, are among the targets

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Ch. 3The Diseases: Diagnosis, Treatment, and Scientific Background 107 for quackery. Bizarre treatments such as chelation therapy and blue-green algae manna have been promoted for those with Alzheimers disease in the absence of evidence of efficacy (52), and there will doubtless be more such remedies proposed in the future. Distinguishing legitimate treatment from quackery can be difficult. Quackery implies a cynical intent to profit from what is known to be useless, or failure to gather evidence that questions the legitimacy of a practice. The way that numerous accepted medical treatments work is only poorly understood, and many start out as accidents; few important treatments were expected, and many are irrational in their origins. A few characteristics of quack remedies, however, distinguish them from standard medical practice. Potential patients and families should ask several questions before embarking on a treatment regimen: l How is it advertised? Quack remedies are often purveyed through popular magazines and are notably absent from medical journals. l How accessible is it? Quack remedies are generally costly, and available only through special outlets. In contrast to experimental clinical trials, the promoters are not associated with universities, major medical centers, or reputable practitioners. l What is in the treatment? Elixirs and miracle potions will not specify what they contain, while clinical trials involve clearly defined components. l Are the practitioners qualified? Those involved in clinical trials will be licensed to practice medicine, and are likely to have specialty certification as well. Those with legitimate qualifications are not threatened by prospective patients asking about them. Those who lack qualifications cannot provide patients with the information and are more likely to take offense. l What is the rationale behind the treatment? This may be difficult for someone not expert in the field to judge, but those explaining clinical experiments will be able to cite support in the medical literature, while quacks may refer only to a popular journal or offer no rationale. What evidence supports the effectiveness of the treatment? For early clinical trials, there will be evidence from animal testing; quack remedies will refer only to anecdotes of successful use. Another difference between them is the elaborate data-gathering methods and analysis for clinical trials. Remedies that have been used for years on many patients and yet lack rigorous scientific data on effectiveness are highly suspect. False Hope and Preliminary Data.The same factors that encourage charlatans can also generate problems for the most careful, well-meaning investigator. Preliminary reports of small increments of medical progress can be greeted by the release of pent-up emotions, leading to unjustifiably high hopes that are dashed in bitter disappointment. That phenomenon has happened at least twice for preliminary reports of Alzheimers disease treatments. One was a study on the use of nalox one, a drug that blocks the effect of heroin-like drugs, and the second a report on implantable drug pumps. Both were both picked up by the national press. The story on naloxone resulted from a small clinical trial in a few patients that was published in a letter to the New England .Journal of Medicine (259). The trial was carefully planned, but involved only seven patients. Such a small sample is common for treatments on the frontier of inquiry. The report was singled out by Margaret Heckler, then Secretary of Health and Human Services, at a press conference on the efforts of the Federal Government to address the problems of Alzheimers disease. It then was widely publicized, The Secretary had merely cited it as an example of promising research, but the preliminary nature of the data could not support the onslaught of public attention. Subsequent trials of the agent belied the initial optimism (298). The other episode attracted even wider publicity. A group at Dartmouth Medical School implanted drug pumps in four patients with Alzheimers disease (diagnoses that were confirmed by biopsy at the time of insertion). The pumps were used to deliver a drug that simulates the ac-

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I @ l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias tion of acetylcholine, based on the theory that the reduction in acetylcholine might be corrected by direct replacement of the drug. The primary interest in doing the study was to test the feasibility of using such pumps to deliver drugs for patients with Alzheimers disease, not to cure the disease in the four initial patients. The investigators did, however, distribute questionnaires to the patients families to find out if they could detect any changes in the patients. The families did not know which drugs were infused into the pumps, and the investigators alternated between using the drug and a harmless fluid. The preliminary drug pump study is being followed up by studies at 10 centers across the United States. A few members of the national press heard about the initial experiment and asked permission to cover the story. The investigators wrote a short description in the medical journal Neurosurgery (131). They also held a press conference because of the interest the story had generated. Although one reason for the press conference was to note the preliminary nature of the data (the title of the paper started with the words preliminary report), it had the opposite effect, making reporters believe there was a big story to cover (242). Reports on the pump therapy eventually reached the public through 160 newspapers, many national magazines (including Newsweek, McCalls, Forbes, and Family Circle), and most of the national television news services (PBS, NBC, CBS, and Cable News Network) (242). One result was that the ,600 personsmany desperately trying to stop the dementia consuming their loved ones who contacted Dartmouth Hitchcock officials in the weeks following the news all had to be told the same thing: there is no new treatment at Dartmouth for Alzheimers disease, only a research program; it is unproven, however good-looking in principle (242). The article in Neurosurgery contained only passing reference to the beneficial effects reported by families, but the television and news services talked mainly to enthusiastic family members and doctors. The press release distributed at the news conference referred to patient benefits in the opening sentences, and added qualifications only in the third paragraph (242). Neither the medical article nor the press release noted that the psy chological tests that had been given to the patients throughout the trial had failed to show significant improvements. Although it is standard practice to spice up stories in public relations work and the Dartmouth press release is not atypical the result in terms of the effects on the hospital, the investigators, and the families who heard about the work and yearned for good news was far from the benign, good publicity intended. The bloating of preliminary research data, whether by reporters, investigators, or research subjects, has several untoward effects. The ensuing publicity can impede the conduct of the very research being reported, endangering the validity of results and making life difficult for investigators who must split their time between doing their work and fielding questions from the media. Other investigators doing similar work are often irritated by such episodes. Some of that irritation might be due to jealousy, but it can also stem from adverse effects on their work and suddenly having to temper the unrealistic hopes of their own patients. Finally, the hopes of those desperately looking for progress are dramatically lifted, then suddenly dropped and shattered. Recently, the problem of constraining public expectations has taken a new twist. Stories about scientific advances in finding biological markers for diagnostic purposes have appeared in Time, Newsweek, business publications, and many newspapers, resulting in many physicians being asked to do the diagnostic tests, yet the tests are clearly stated in the articles to be in experimental stages of development. Even more instructive is the intense publicity surrounding the publication of the lead article in the November 13, 1986, issue of the New England Journal of Medicine (302a). The article reports encouraging results from testing of the drug tetra hydroaminoacridine (THA, first discovered in 1909, but newly applied to treatment of Alzheimers disease) on 17 subjects with the diagnosis of Alzheimers disease. The Associated Press report about the article reads Researcher Fears Hysteria Over Alzheimers Drug Discovery (130a). The researchers in this case have clearly anticipated that their drug trial would be widely reported, and that the public would demand quick action to

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Ch. 3The Diseases: Diagnosis, Treatment, and Scientific Background 109 make the drug available. (THA is nonpatentable, raising yet another issue, because private firms state they are reluctant to manufacture it and push it through the expensive FDA approval procedure without any way to guarantee a profit.) Press hunger for new results is clear in this instance, where all the rules of careful reporting were followed. The study was carefully controlled, the results dispassionately displayed, and the steps leading to the trial were called a triumph for the scientific method in an accompanying editorial (78a). Yet many physicians learned of the story from their patients (the AP story was released on a Wednesday about the Thursday issue of the Journal, and most subscribers do not receive their copies until Friday or early the following week). People do in fact want to know the results of reliable studies as soon as they can, and the early news accounts of the THA article contain the important qualifiers, yet the scientists clearly anticipate widespread misunderstanding. There is no simple way to prevent public relations disasters. Any institutional or regulatory solutions are likely to be worse than the problem. Reporters can work to be more objective, and investigators can be open but not unrealistic. The line between enthusiasm for work in progress and the creation of unjustified optimism is thin. Most researchers are working in this field, after all, just so they can contribute to the eradication of the blight of Alzheimers disease. Progress is welcomed and feeds the emotional drives of investigators as well as patients and their families. Further, it is important that such events not inhibit the reporting of preliminary results. Preliminary reports are efficient ways to test new approaches to treatment, and reporting them when preliminary results are known whether successful or not-can save other investigators time and wasted effort. But physicians and other scientists can be careful in how the results are reported. Many family members are grasping for straws. In research on dementia, many such straws are reported each month, but most are buried in medical journals. Both the reports cited here were covered not only in the medical literature (where their significance was likely to be understood), but also heralded at press conferences (where it was likely to be misunderstood). It is safe to report failures, but success must be handled carefully. Perhaps the most important preventive measure is for clinical investigators to anticipate the publicity, think through how to handle it, and at times eschew it. A delicate balance must be struck between informing the public and the risk of misinforming it. Medical Management.Health professionals can manage Alzheimers disease in several ways. Some of their functions are: diagnosis of the disease causing dementia; the search for diseases of other organ systems that can be treated, which might improve the patients mental function; assessment of the type and severity of the disease or diseases; management of those aspects of the disorder that can be treated (e.g., behavioral problems amenable to treatment by medication or to family education on avoidance or management); referral to medical supports (e.g., participation in clinical trials can be therapeutic not only for medical benefits but also in providing a feeling of contributing to the ultimate conquest of Alzheimers disease); education of the patient and family about the disease (e.g., what to expect, genetic risks, drugs and foods to avoid); and referral to social and legal supports (e.g., family support groups, legal services, government programs). The importance of family education, legal referral, and recommendation of family support groups is elaborated in several other chapters. The focus here is on management of the medical aspects of this dementing disease. Some pharmaceutical agents have been reported to diminish the cognitive impairment of patients with Alzheimers disease. Only one, however, has been approved for clinical use by the U.S. Food and Drug Administration (FDA) (based on several clinical trials). Although patient improvement is consistent, it is minimal. The agent in question, a mix of different drugs, has been in clinical use for three decades; it is marketed under the trade name Hydergine. Hydergine has been used in Europe for treating dementia for over a decade, and is increasingly being used in the United States.

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110 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias Its mechanism of action is unknown. Hydergine was once thought to improve blood flow, but it is now called a metabolic enhancer. It alters the biochemistry of nerve cells in several ways, but the reason for mild mental improvement is not known (47,180,328). Medical management of behavioral symptoms can improve mental function of the patient, simplify the patients care, or both (135,265). Many patients develop depression, which can be treated by both education and antidepressant medications. Care must be taken to avoid those antidepressant agents that inhibit the action of acetylcholine, which can worsen the patients dementia, and to use agents less likely to exacerbate dementia (83, 154,239). Management of hallucinations, anxiety, sleep disorders, agitation, aggression, and wandering often includes changing the patients habits, adapting the environment, educating the family, and administering drugs targeted specifically at the behavior in question. One physician has suggested that the guidelines for treatment should be to treat disability not abnormality, to reverse associated curable illnesses, to limit troublesome symptoms, and to maintain continued support (27). Most physicians with extensive practice in treating dementia occasionally use medications to control patients behavior, but the drugs are carefully monitored, and a different selection of agents is usually tried than for other kinds of patients. The drugs used to manage behavioral symptoms, for example, are chosen to minimize their untoward effects on intellectual functions (333). Older individuals in general, and patients with dementia in particular, are more likely to develop adverse side effects from drugs affecting behavior. Thus special care must be taken to prescribe those medications least likely to worsen the dementia and to induce unwanted side effects (328). This careful approach to medications contrasts with the situation found in some nursing homes. One study reported a more than 300-fold variation among different long-term care facilities in the dose and frequency of medications used to control patients behavior (256). Such large differences cannot be explained by variations in accepted medical practice, and the pattern of use suggested that drugs were relied on in some facilities as substitutes for staff. Difficulty in eating can be a major problem among dementia patients. It is not clear why patients with dementia have difficulty eating. They may forget how to eat, refuse to eat-expressing a wish to die-or lose their desire for food. One preliminary report of eating in a nursing home suggests that the cause may be difficulty in swallowing. That study found that of those who depended on caregivers to eat there was a strong correlation with poor mental function, but only a minority of those with very poor mental function had eating difficulties (290). This suggests that there may be a common factor linking eating difficulty to severity of dementia for a fraction of residents. If true, that common factor might also indicate that difficulty in swallowing is an organic symptom, and refusal to eat more involuntary than conscious. For those experiencing eating difficulty, it is important to evaluate the cause of the difficulty. Is it confusion about how to eat, or tendency to gag or cough when swallowing? Training both family and institutional caregivers how to differentiate organic from voluntary refusal to eat, and how to deal with eating difficulty is the main avenue to treatment. Referral to a speech therapist may help to determine the nature of the eating difficulty, if ability to swallow is in question. Incontinence of bowel and bladder is a significant problem for many of those with dementia. Half of all patients in nursing homes have urinary incontinence, and this group overlaps extensively with those suffering with dementia, The majority of those in nursing homes with urinary incontinence also have bowel incontinence (64 percent), and most showed severe mental impairment (57 percent). Despite the magnitude of the problem, fewer than 5 percent had a specific cause for the incontinence noted in their medical record (237). Many cases of incontinence can be either eliminated or compensated for using existing technologies, but require a careful evaluation of the cause of incontinence, use of appropriate drugs or devices, and staff training (237). Many of the problems faced by those with dementia are probably susceptible to improvement

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Ch. 3The Diseases: Diagnosis, Treatment, and Scientific Background 111 by using current technologies with more rigorous application of existing knowledge. One hope for improved care of dementia patientsnot only in nursing homes, but also in hospitals, clinics, homes, and day care centersis knowledge that will be developed in special teaching nursing homes. The National Institute on Aging, the Robert Wood Johnson Foundation, and the Veterans Administration are supporting a new movement to affiliate nursing homes with centers of medical excellence such as nursing and medical schools. These facilities will be much more involved in testing new methods of treatment and management, and will in the long run likely set new standards for care of the chronically ill. Prospects for Research on Drugs and Devices.Although only one minimally effective agent has been approved by FDA to be marketed for use in dementia, many other drugs and devices are under investigation. These are too numerous to describe here, and the list changes rapidly as new ideas or agents emerge. One promising route to discovering new drugs has been the study of chemical imbalances in Alz heimers disease. The acetylcholine hypothesis suggests numerous possible treatments, and many have been tried or are under investigation. The rationale behind these trials has been extensively reviewed (see 25,54,119,132 )200,255,271)341). Many agents are also being tested in relation to other theories of causation, such as the siliconaluminum hypothesis, the viral hypothesis, the improvement of membrane characteristics, and the correction of immune deficiency. Other agents being tested in the United States have been used in other countries with some reported success (216). Some experimental therapies are directed at chemical imbalances in the brain that involve chemicals other than acetylcholine. These include very short proteins (called neuropeptides), nicotine, and drugs that oppose the action of opiate drugs (117). Advances in therapy may arise from these numerous clinical trials, but existing reports of successful treatment are either preliminary, have not been replicated by other investigators, are inconsistent, or result in only minimal clinical improvement. Novel ways to deliver drugs to the brain are also important in treatment research. Many chemicals that are active in the brain are digested before they reach the bloodstream or cannot get into the brain even if they enter the blood. Many investigators are developing drug pumps or altering drug structure in attempts to circumvent these problems. Use of nerve cells themselves for treatment of Alzheimers disease or other brain diseases is an especially intriguing possibility. The technique involves directly placing nerve cells in the brain, where they grow and can release chemicals that communicate with other brain cells. The method has been used successfully in several animal model diseasesmost recently in primates (257) and cell growth can be confirmed and behavioral deficits corrected by the new cells (23,68,95,199). Nerve cells from one species can also grow in another; they appear to be protected from the immune system of the recipient, but they do not function as well (23). Investigators hope that nerve cell implantation (sometimes called brain transplants in the popular press) can eventually benefit patients with Alzheimers disease (as well as those with Parkinsons disease) (23), but such therapies will hinge on extensive animal testing and preliminary human trials and are unlikely to be available within the next decade. Many technical problems must be overcome, and the appropriate source of nerve cells is not at all clear. Use of human fetal cells would be ethically objectionable to many, and cells from other species do not work as well and might also be rejected by some recipients on moral grounds (95). A neutral source of tissue (e.g., from a source in the patient) may yet be found. Implantation of patients own cells has already been tried in Swedish patients suffering from Parkinsons disease (described later in this chapter), but it yielded no clinical benefit (23). The cells were taken from the core of the adrenal gland, which contains nerve-like cells. None of the barriers to development of this technique now appears insurmountable, although it will likely take many years of research before practical treatments are found.

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112 Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias Dementia Caused by Blood Vessel Disease Diseases of the blood vessels cause more deaths in the United States than any other group of disorders. Coronary heart disease and stroke are the most prominent examples. In addition to causing death, blood vessel disease can cause many other clinical syndromes, including dementia. Vascular disease is believed to be the second most common cause of dementia. In one large study, it accounted for 17 percent of cases, and was found in combination with Alzheimers disease in an additional 18 percent (310). The prevalence of pure vascular dementia is, however, now a topic of clinical debate (221). Current methods of classifying patients are being questioned, and some clinicians are uncertain about the relationship between symptoms of dementia and brain cell loss due to vascular disease. Some investigators beginning clinical trials specifically for patients with multi-infarct dementia are noting difficulty in identifying sufficient numbers of patients (31a). The prevalence of vascular dementia can be resolved only with further rigorous longitudinal studies. Some answers may be found in the ongoing Systemic Hypertension in the Elderly Project, whose primary sponsor is the National Heart, Lung, and Blood Institute. The National Institute on Aging is sponsoring an analysis of the data that will track the incidence of multi-infarct dementia in response to treatment of high blood pressure. Detection of vascular dementia is important for several reasons. If dementia is caused by large strokes, further deterioration may be prevented using standard treatments for stroke. Finding vascular disease in the brain can also alert the physician to look for damage to the heart, kidneys, or other organs. Evaluation of patients with vascular dementia may also disclose preventable or treatable underlying risk factors such as hypertension or diabetes. And risk to other family members is different if the dementia is caused by blood vessel disease rather than by Alzheimers disease. (The genetic aspects of vascular disease are more indirect, generally related to underlying causes such as blood lipids, diabetes, or hypertension. Relatives may benefit from detection of such risk factors if they take action to reduce the chances of developing vascular disease themselves.) The incidence of and mortality from stroke and heart disease have declined dramatically over the past two decades. Mortality from stroke decreased almost 50 percent from 1968 to 1982, for example (91), The decline is likely due to a combination of changing dietary patterns, other changes in personal habits, and improved medical care of the elderlythe major factors behind the parallel decline in mortality from heart disease (188). Most of the statistics on this decline are for large strokes, however, and do not yield direct information about vascular dementia. It is likely that this encouraging trend also pertains to vascular dementia, but that relationship has not been studied directly. Dementia caused by blood vessel disease results from death of nerve cells in regions nourished by diseased vessels. The death of brain tissue due to poor delivery of blood is called cerebral infarction. Dementia may ensue after a certain total mass of brain tissue has been destroyed (273). Such damage can be caused by one or a few large strokes, several smaller ones, or many microscopic ones. Dementia may also result from death of brain cells due to lack of oxygen reaching the brain (following a heart attack or heart failure, or for other reasons) (46)320). Large strokes are not usually difficult to differentiate from other dementing conditions because they affect many brain functions in addition to mental activity. When cerebral infarcts are smaller, however, dementia may be the main symptommaking it difficult to distinguish from Alzheimers disease or other dementias. The precise symptoms and physical findings depend on which parts of the brain die, and attempts are being made to define more specifically the characteristics of vascular dementia (89,152)221)225,344). When there are multiple infarcts, the diagnosis is called multi-infarct dementia (MID). The number can range from a few to over a dozen. On average, individual infarcts are about a half inch in diameter (1 centimeter), and symptoms are commonly absent until 100 to 200 cubic centimeters of brain tissue have been destroyed (160)273), unless the patient has another dementing condition.

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Ch. 3The Diseases: Diagnosis, Treatment, and Scientific Background 113 Multi-infarct dementia can be distinguished from Alzheimers disease and most other disorders by its association with: l l l l l a relatively abrupt onset; progression of dementia in (steps rather than gradual deterioration; history of previous strokes; symptoms or physical findings that can be anatomically traced to loss of specific nerve cells; and presence of diabetes, high blood pressure, or cardiovascular disease affecting other organs. Poor blood flow in the major arteries feeding the brain can be directly detected and correlated with dementia (317). Such poor blood flow typically precedes symptoms in patients with MID, but is found only after symptoms arise in Alzheimers disease (267). Rigidity of blood vessels in the brain can be indirectly measured, and corroborates the association with MID compared with controls or those with Alzheimers disease (157). The special features of MID are measured in standardized questionnaires developed to differentiate it from other dementias (108,128)270), and these are used in research studies to classify patients with dementia. Life expectancy is somewhat shorter for patients with MID than for those with Alzheimers disease (15). Patients with MID also tend to be older and more frequently have abnormal electrocardiograms (indicating higher likelihood of heart disease) (48), although one recent study found a 5 to 6 percent prevalence of dementia among young stroke victims (under 65) (176). If MID is associated with high blood pressure, diabetes, or disease in other organs, the associated conditions can be treated. Some believe MID should be treated like stroke, but the treatment of stroke is itself controversial and variable when the stroke is not caused by identifiable factors. As with Alzheimers disease, treatment of MID awaits new discoveries. In addition to multi-infarct dementia, dementia can arise from occlusion of blood vessels by debris in the blood stream (emboli) (reviewed in 159). These emboli can arise from diseased heart valves, damage to cells lining the heart, dislodging of clots in large vessels, the release of fat from large bones, or large sudden infusions of air or other gases. Death of cells due to loss of blood supply can also affect the white matter of the brain, rather than the cerebral cortex. The white matter contains relatively few nerve cell bodies; death of nonneural cells and nerve cell processes in these regions results in disconnection of different nerve cell groups rather than loss of nerve cells. This can nonetheless cause dementia. One name for this type of disease is Binswangers disease, or subacute arteriosclerotic encephalopathy (236). Its prevalence may be higher than previously estimatedsomething newly discovered because MRI scanning makes its detection possible. One recent study described a number of patients with a disorder that is clinically difficult to distinguish from Binswangers disease, but that appears to have a cause other than hypertension or arteriosclerosis (46). That new finding further demonstrates the uncertainty of classification and cause even among clinical subtypes of vascular dementia. Further studies employing MRI scanning may confirm that brain infarction is more common than previously believed, and should clarify the relationship between infarction and clinical symptoms of dementia (160). Dementia can follow bleeding into the brain caused by diseased or malformed blood vessels. Blood vessels in the brain may also form balloon like sacs, called aneurysms, that can disturb adjacent structures or rupture to cause bleeding. Both bleeding and aneurysm formation are relatively common, but patients presenting with just dementia only rarely have them. Finally, some very rare diseases of the brains blood vessels, such as MoyaMoya disease or Takayasus disease, can cause dementia. Other Dementias Parkinson% Disease Parkinsons disease is a relatively common disorder, and some Parkinsons patients develop dementia. The prevalence of symptomatic dementia among Parkinsons patients is somewhat controversial (19). Some investigators have found a disproportionate fraction of patients with Parkinsons

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114 Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias disease exhibit symptoms of dementia (87,184, 206), while others find that the rate of cognitive impairment has been inflated, and is actually no higher than the risk for the general population (45,183,305). Most neurologists now consider Parkinsons disease to be associated with dementia in a minority of patients even in those who do not have Alzheimers disease or another dementia (148)245,300). There is also a clear subset of patients whose brains show the changes of both Parkinsons and Alzheimers diseases (34,186,276,331). That group of patients underscores the confusing relationship between the various disorders causing dementia. The dementia occurring in Guam and other Pacific islands combines features of Alzheimers disease, Parkinsons disease, and other disorders, and is now thought to be historically (and probably causally) related to decreased calcium and increased levels of other minerals in local water supplies (107)240). The primary symptoms of Parkinsons disease are involuntary movements, slowness, and rigidity. Speech is often slow, and movement is difficult to initiate. Most patients have a characteristic tremor (rapid shaking) of the fingers that is traditionally likened to pill-rolling. Parkinsons disease is associated with loss of nerve cells located in the substantial nigra (black substance, so called because the cells contain dark pigment). whereas the cells lost in Alzheimers disease are believed to use acetylcholine or other chemicals to communicate with other cells, those lost in Parkinsons disease use primarily dopamine. The work on the biochemistry of Parkinsons disease in fact predates that on Alzheimers disease by over a decade, and Parkinsons disease serves as the model for researchers studying Alzheimers disease (245). Drugs that partially replace the function of dopamine have been discovered, and these substantially reduce the abnormal movements in most patients with Parkinsons disease. The advent of such drugs was welcomed as a therapeutic revolution in neurology in the 1970s. There are several different varieties of Parkinsons disease. The cause of classic Parkinsons disease is not known. Another type, postencephalitic Parkinsonism, has been linked to previous brain infection with a virus. It is most often found among those who contracted brain infections during the influenza epidemic of 1918, but it can occur in others as well. One interesting feature of postencephalitic Parkinsons disease that distinguishes it from classic Parkinsons disease is the finding of neurofibrillary tangles in nerve cells of the substantial nigra. The tangles are similar to those found in other groups of cells in Alzheimers disease. Another interesting aspect of Parkinsons disease and its relation to dementia has emerged from an unfortunate experiment that began a few years ago in Stanford, CA. A former chemistry student began manufacturing a drug resembling heroin in his home. The process he used also yielded a side product that was ingested with the drug. This side product, called l-methyl-4 -phenyl-1,2,3,6tetrahydropyridine (MPTP), caused him and others who took the drug to develop symptoms of Parkinsons disease. Administration of the drug to primates also induces a disease resembling Parkinsons disease, and the animals lose cells in the substantial nigra just as would a human patient with Parkinsons disease, The cells that die do not look like those found in classic Parkinsons disease, however, and the degree to which MPTPinduced Parkinson symptoms suggests the primary cause of classic Parkinsons disease remains unknown. MPTP-induced symptoms bear on the debate about whether Parkinsons disease can cause dementia in the absence of other diseases, because MPTP patients showed intellectual decline (301). Progressive Supranuclear Palsy (PSP) PSP is a disorder with several clinical similarities to Parkinsons disease. It was first described in 1904 (153). Half to two-thirds of the patients with PSP deteriorate intellectually (192). PSP was not clinically distinguished from Parkinsons disease until 1964 (297), and accounts for roughly 4 percent of patients with Parkinsons disease (343). It differs from Parkinsons disease in that patients lose the ability to gaze up or down, and it is usually not associated with a tremor. Recent reports have shown that the chemical imbalances in PSP, like Parkinsons disease, involve dopamine, but these same studies disagree on the extent to

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Ch. 3The Diseases: Diagnosis, Treatment, and Scientific Background l 115 which there are also Alzheimer-like changes in acetylcholine (169,276). An interesting group of recent findings bears on the relationship among these disorders. The pathological changes of PSP are anatomically located in places characteristic of Parkinsons disease, but microscopically they more closely resemble the neurofibrillary tangles of Alzheimers disease (although they can be distinguished on careful inspection). Further, investigators have found some suggestive, but not conclusive, chemical similarities in the tangles found in Alzheimers disease, PSP, postencephalitic Parkinsons disease, and several other rare disorders (82). These similarities represent one more of the mysterious and poorly understood relationships among the various disorders causing dementia. Huntingtons Disease Huntingtons disease is a genetic disorder that causes uncontrollable twisting and writhing movements and also leads to dementia. Most patients with Huntingtons disease do not develop symptoms until late middle age, and the symptoms may vary from person to person even in the same family. The movement disorder is thought to be caused by a loss of nerve cells in brain regions called the caudate nucleus and putamen. Children of an affected parent have a 50-percent risk of developing the disease. The social and longterm care needs of these patients are similar to those for Alzheimers patients (325,326). A group of investigators recently tracked the gene from parents to children in large families, including one extended family living near Lake Maracaibo in Venezuela. Molecular genetic techniques were used to map human chromosomes (37) and were applied to families with Huntingtons disease (126). The disease-causing gene is located on chromosome number 4, and the test can be used in some families to predict whether particular individuals will develop Huntingtons disease (326). The test is not available for clinical use and is not useful in many families (e.g., because tracking the gene usually requires that DNA from an affected parent be available). Even in the best studied families, the test is not always accurate (because it does not detect the Huntingtons gene itself, but rather one close to it), and so interpretation must be cautious. Such care is important in Huntingtons disease because test results are fraught with serious social, emotional, economic, and financial problems (21,173,197,325,326). Current experience with the Huntingtons disease test will be relevant to genetic risks of familial Alzheimers disease if an analogous test can be developed for Alzheimers and other dementing disorders, Problems in techniques, information dissemination, and privacy protection encountered by Huntingtons families will likely prove true for those concerned with familial Alzheimers disease as well. The work on Huntingtons disease is thus an important pioneering effort. Dementias Caused by Infection Infection by bacteria, viruses, fungi, or unconventional agents can all cause dementia, but do so only rarely. Two infectious dementias transmissible dementia and AIDS dementiaare of special note because of their prevalence and scientific interest. Other infections can cause dementia, but only rarely. Longstanding syphilis, for example, was once among the most common causes of dementia, but it is now quite rare in the United States. Transmissible Dementia.The transmissible dementias caused by unusual infectious agents Creutzfeldt-Jakob disease, Gerstmann-Strassler syndrome, and kuru-have already been discussed in describing possible infections caused by Alzheimers disease above. Several interesting features were not mentioned there, however. Transmissible dementias characteristically kill patients much more rapidly than Alzheimers disease does, although the transmissible dementias are also clinically heterogeneous. Creutzfeldt-Jakob disease has become a concern among those receiving hormone therapy for congenital short stature because several young patients who were treated with human growth hormone recently died with Creutzfeldt-Jakob disease; an additional four patients are being investigated to see if they too have transmissible dementia (43,304). The dementing disease in these young patients is thought to be linked to con-

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116 Losing a Million Minds: Confronting the Tragedy of Alzheimer's Disease and Other Dementias lamination of growth hormone by patients with Creutzfeldt-Jakob disease (110,172,309), Until mid1985, growth hormone was only available from preparations purified from pooled human pituitary glands, but that supply has been terminated and a new source derived from genetically engineered bacteria has been approved. Current and future stocks of growth hormone should thus not be contaminated. A related concern has emerged in connection with blood donations. Creutzfeldt-Jakob disease can be transmitted to animals from the blood of affected human patients (195). That finding has led one group to urge that patients with dementia refrain from donating blood, and that blood banks reject blood from dementia patients (202). The handling of tissues and fluids of patients with Creutzfeldt-Jakob disease and other transmissible dementias also requires special precautions (6). The relationship between Alzheimers disease and transmissible dementia has long been a topic of speculation. As with Alzheimers disease, there is clustering of cases in some families (12,203). Familial cases of transmissible dementia can clearly infect primates (12,44,203). The microscopic changes of the transmissible dementias are quite different from those of Alzheimers disease loss of nerve cells, proliferation of nonnerve supporting cells, and a peculiar spongy appearance of defined brain regions under the microscope. In some patients, however, there is overlap of microscopic findings (64,203). Attention has recently shifted from atypical transmissible dementias to infections caused by more conventional viruses as causes of Alzheimers disease (195). Dementia caused by lingering brain infections with conventional viruses is also well known, but it was rare until recently except in patients whose immune systems were debilitated. AIDS Dementia,A most alarming cause of dementia has been recently identified in patients with acquired immune deficiency syndrome. AIDS is caused by a small virus that attacks and kills specific cells of the immune system, rendering the patient defenseless against microorganisms. The AIDS virus causes infectious dementia through two mechanisms: the immune dysfunction of AIDS leads to brain infections by other organisms, and the AIDS virus also appears to cause dementia directly (24,144,229,230,246,262). Brains of patients who die with AIDS dementiathat directly caused by the AIDS virusshow clusters of immune cells in some areas, affecting primarily cells deep in the brain rather than in the cerebral cortex. AIDS dementia is now the most common cause of dementia caused by infection (161). A large fraction, probably most, of patients with AIDS develop dementia (245). The majority of such cases appear to be due to the AIDS virus itself, while a minority are caused by a variety of other organisms in addition to AIDS virus infection (230). Researchers do not yet know whether the dementia also afflicts those who are infected by the virus and do not get full-blown AIDS (249). Dementia in such patients can precede other symptoms of AIDS, and at least some patients with this type of dementia do not fulfill all the criteria of AIDS (187,214). That is of concern for several reasons. Patients infected with AIDS virus who do not develop clinical AIDS far outnumber those who do. Those who succumb to AIDS invariably die under current therapies, but mortality rates among those who do not develop AIDS though infected with the virus are unknown. Children and infants infected with AIDS can also develop dementia and malformations of the brain (18). Investigations in this area are just beginning, and the magnitude of the problem of AIDS dementia will not be known until many more investigators are involved and more data accumulated. Dementias caused by Toxins Alcohol.Alcohol is associated with over a dozen forms of brain disease. The diseases may be due to direct effects of alcohol, to nutritional factors, or to indirect effects of damage to the liver or other organs. The most common alcohol-related dementia is Wernicke-Korsakoff syndrome. Korsakoffs syndrome is not found only among chronic alcoholics, but alcoholism is by far its most common cause. Wernickes encephalopathythe early, shortterm part of the Wernicke-Korsakoff syndrome is characterized by disorders of eye movement, abnormal gait, and global confusion. If left un-

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Ch. 3The Diseases: Diagnosis, Treatment, and Scientific Background l 117 treated, it can progress to coma or permanent neurological damage, and severe cases can be fatal even if treated. Eighty percent of those who develop Wernickes encephalopathy go on to develop Korsakoffs syndrome (263) although some patients develop Korsakoff syndrome without ever showing Wernickes encephalopathy. Korsakoff syndrome is characterized by loss of recent memory, often attended by disorientation to time and place and other mental symptoms. Some cases of Korsakoff syndrome have only memory loss, and represent a pure amnesia rather than dementia. Wernicke-Korsakoff syndrome is related to deficiency of vitamin B-1 (thiamine), and the standard initial treatment is thiamine administration (122). The disease appears to be caused by poor nutritional intake in patients with a genetic predisposition to the disease (31). The chain of events leading to the syndrome is not fully understood, however, in part because animal models of thiamine deficiency are not exact duplicates of the human disease (122,263). There is currently a debate in neurology and psychiatry about whether there is a dementia directly caused by long-term alcoholism, in the absence of nutritional problems or diseases of other organs (such as heart, liver, and endocrine glands) (49,115). Circumstantial evidence indicates that those who have a history of heavy drinking for 15 to 20 years develop a dementia that is distinct from either Alzheimers disease or WernickeKorsakoff syndrome, Such patients typically show listlessness, poor judgment, carelessness, diminished attention, and slowing of thought processes. They do not usually have the language problems or difficulty drawing figures typical of Alzheimers disease (115). The debate is about whether these changes are due to direct chronic toxicity of alcohol on the brain or to other factors. Other Toxic Dementias.Liver damage due to alcohol or severe liver disease can also cause dementia. The liver is responsible for clearing many toxins out of the body, and liver failure due to cirrhosis can cause accumulation of byproducts followed by dementia and even coma. Chronic exposure to heavy metals (especially mercury and lead) at home or in the workplace can cause dementia, Many alcohol-related diseases in addition to Korsakoff's syndrome and liver disease can induce dementia. Dementia can result from excess blood lipids, exposure to toxic chemicals, and severe nutritional deficiencies. Normal Pressure Hydrocephalus Normal pressure hydrocephalus (NPH) is a relatively uncommon cause of dementia. Its importance lies not in its frequency, but in its potential for correction. The classic description of the findings is a combination of dementia with urinary incontinence, a slow and hesitant gait, and dilation of the fluid-filled spaces in the brain. Another symptom that suggests NPH is a history of bleeding in the brain or head trauma, In practice, NPH may lack some of these features or have characteristics of other dementing conditions (47). Normal pressure hydrocephalus was first described in 1964 (210), and the condition began to be more widely noticed the following year (129). The treatment for NPH is to provide a surgically implanted conduit (shunting) for fluid to drain from the brain into another body cavity, usually the abdominal cavity (164). The efficacy of shunting varies widely, depending on severity, diagnostic accuracy, and duration of illness (success hinges on accurate detection and prompt treatment). Many studies find successful relief of symptoms in 40 percent of cases (127)164)291). When shunting works, it brings rapid clinical improvement. One consideration in shunting for NPH is whether a sample of brain tissue should be taken for microscopic examination while inserting the shunt inside the skull. That procedure may permit a diagnosis of another dementia if the shunting procedure fails, but it does entail a slight added risk to the patient. A problem with current treatment for NPH is the high rate of major complications, estimated at 40 percent, and this emphasizes the need for careful selection of patients (164). Downs syndrome There are several interesting relationships between Alzheimers disease and Downs syndrome. First, the number of individuals affected with Downs syndrome among relatives of patients with Alzheimers disease is greater than expected (137,

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118 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias 138,140,141). But even more curious is the similarity in brain changes that occur with age in Downs syndrome. Young individuals with Downs syndrome have a reduced number of cells in the nucleus basalis, and these cells may die off with age (53). Patients with Downs syndrome who survive into middle age frequently develop a dementia, and the microscopic and anatomic features of the findings in the brain are visually indistinguishable from those that occur in Alzheimers disease (194)247,327,334, 335). There may be some differences, however, in the detailed chemical composition of tangles and plaques between Alzheimers disease and Downs syndrome (179). The similarities between Alzheimers disease and premature aging in Downs syndrome have led to speculations about causal links between the two diseases (94). Downs syndrome is usually caused by the presence of an extra chromosome 21 in the patients cells. More rarely, it is caused by chromosomal rearrangements or malformations that lead to excess of only part of chromosome 21. These findings have led to investigation of whether there is a chromosome defect in Alzheimers disease as well, but results are mixed, and no aberration is consistent (reviewed in 327). Many investigators are studying Downs syndrome as a model of Alz heimers disease in a relatively homogeneous population, assuming that the brain changes that occur are part of the syndrome and might provide clues to the origin of Alzheimers disease. Picks Disease Picks disease is a rare dementing disorder clinically similar to Alzheimers disease. The diagno sis of Picks disease is, in fact, most often made on autopsy of a patient with clinically diagnosed Alzheimers disease. The cause of Picks disease is mysterious and uncertain, and it also can occur in families. The distinction between Picks and Alzheimers diseases rests on the microscopic appearance of the brain. While someone with Alzheimers disease has plaques and tangles, a patient with Picks disease has pale and swollen nerve cells that contain globules of protein that are designated Pick bodies. Recent evidence suggests biochemical similarities between Alzheimer tangles and plaques and Pick bodies (254). The intriguing relationship between these two dementing disorders is underscored by a newly described genetic disease that combines features of both (222). Dementia without Detectable Brain changes One final category of dementia is defined by the absence of any abnormal findings in the brain despite clear clinical symptoms. Such cases constituted a small fraction (2 of 50 patients) of those in a classic autopsy study of dementia (311), and cases continue to be reported of 99 patients in a recent study (134). One 91-year-old man whose brain revealed no plaques at all (despite extensive search) but who suffered from dementia is of particular interest (13) since most persons his age without dementia would have a few plaques. This mysterious group of patients has been called the percent problem (163). The condition has also been called simple atrophy or idiopathic dementia because its cause and mechanism are unknown. CHAPTER 3 REFERENCES 1. Albert, M., Naeser, M. A., Levine, H. L., et al,, CT Density Numbers in Patients With Senile Demen~ia of the Alzheimers Type, Archives of Neurology 41:1264-1269, 1984. 2. Alzheimer, A., Uber Eine Eigenartige Erkrankung der Hirnrinde, Gesamte Psychiatric 64:146-148, 1907. 3. Amaducci, L. A,, Fratiglioni, L,, Rocca, W. A., et al., Risk Factors for Alzheimers Disease (AD): A Case-Control Study on an Italian Population, (abstract) Neurology 35 (Supplement 1):277, 1985. 4. Amaducci, L. A., Fratiglioni, L., Rocca, W. A., et al., Risk Factors for Clinically Diagnosed Alzheimers Disease: A CaseControl Study of an Italian Population, Neurology 36:922-931, 1986. 5. American Medical Association, Council on Scientific Affairs, Dementia, pending.

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Ch. 3The Diseases: Diagnosis, Treatment, and Scientific Background l 131 332. Wietgrefe, S., Zupanic, M., Haase, A., et a]., Cloning of a Gene Whose Expression Is Increased in Scrapie and in Senile Plaques in Human Brain, Science 230:1177-1179, 1985. 333. Winograd, C. H., and Jarvik, L. F., ( Caregivers of Patients With Dementia, Journal of the American Geriatrics Societev 34:295-308, 1986. 334. Wisniewski, K. E., Dalton, A. J., itlcLachlan, D. R. C., et al., Alzheimers Disease in Downs Syndrome: Clinicopathologic Studies, Neuro)ogv 35:957961, 1985. 335. Wisniewski, K. E., Wisniewski, H. M., and Wen, G. Y., Occurrence of Neuropathological Changes and Dementia of Alzheimers Disease in Downs Syndrome, Annals of Neurologv 17:278-282, 1985. 336. Wolozin, B. L., Pruchnicki, A., Dickson, D. W., et al., A Neuronal Antigen in the Brains of Alzheimer Patients, Science 232:648-650, 1986. 337. Wright, A. F., and Ithalley, L. J., Genetics, Aging and Dementia, British Journal of I%ychiatry 145:20-38, 1984. 338. Wurtman, R. J., ( Alzheimers Disease, Scientific American 252:62-74, 120, January 1985. 339. Wurtman, R.J., Blusztajn, J. K., and Maire, J. C., Autocannibalism of Choline-Containing Membrane Phospholipids in the Pathogenesis of Alz heimers DiseaseA Hypothesis, Neurochemis trtiy International 7:269-372, 1985. 34o. Wyngaarden, J.B., Risk Factors for Alzheimers Disease, From the NIH .Journaf of the American Medical Association 255:1105, 1986. 341. Yates, C. M., Critique: Transmitter Deficits in Alzheimers Disease, Neurochemistry International 7:571-573, 1985. 342. Yen, S. H., Crowe, A., and Dickson, D. W., Monoclinal Antibodies to Alzheimer Neurofibrillary Tangles. 1. Identification of Polypeptides, American Journal of Pathologv 120:282-291, 1985. 343. Young, A. B., Progressive Supranuclear Palsy: Postmortem Chemical Analysis, Archives of Neurologv 18:521-522, 1985. 344. Zanetti, 0,, Rozzini, R., Bianchetti, A., et al., HDL Cholesterol in Dementia, Lancet, July 6, 1985, p. 43. 345. Zubenko, G. S., Cohen, B. M., Growden, J., et al., Cell Membrane Abnormality in Alzheimers Disease, Lancet, July 28, 1984, p. 235.

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Chapter 4 The Family

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CONTENTS Page A Profile of Family Care . . ., .135 Who Provides How Much and What Kind of Care in Which Families?. .. ...135 What Effect Does Caring for a Dementia Patient Have on the Family? . . . . . .. .138 Are the Burdens Caused by Dementia Unique to the Condition? ...........150 How Will Changing Patterns of Family Life Affect the Availability of Caregivers in the Future?. ..........150 Helping Families. . . . . . ..152 Will Improving Supports for Caregivers Ease the Burdens on Families? ......153 Will Respite Care Reduce Use of Costly Nursing Homes at a Savings to the Taxpayer?. . . . . . .154 Will Providing Supports for Caregivers Cause Them To Do Less for the Recipient? . . . . . ..155 Factors Leading a Family To Seek Nursing Home Placement . . .156 Studies That Examine the Relationship of Respite and Placement .............156 Issues and Options ...................15 8 Issue 1: Should Government Encourage Families To Assume Responsibility for Their Relatives? ...............15 8 Issue 2: Should Government Include Caregivers in Definitions of Care Recipient? . . . . . .. ...158 Issue 3: Should Government Assist in Coordination or Selection of Services?. . . . . . .. ...159 Issue 4: Should Government Provide Respite Services? ..................16 1 Issue 5: Should Government Make Access to Reimbursable Resources Easier, More Equitable, or Available Sooner?. . . . . . .. ....161 Issue 6: Should Government Provide Family Support Groups or Information Centers for Caregivers? . . . .162 Chapter 4 References .................16 2 Tables Table No. Page 4-1. 4-2. 4-3. 4-4. 4-5. 4-6. 4-7. 4-8. 4-9. Where the Patient With Dementia Lives. . . . . . .. ....136 Patients Behavior Problems Cited by Families . . . . . ..137 Amount of Salary Lost by Family Members Who Quit a Job To Care for a Person With Dementia .......141 Sources of Income Used To Support Person With Dementia ............143 Amount of Patients Savings Spent on Care Since Becoming 111 ........143 Proportion of Patients Income/Savings Expected to Eventually Go for Care ...........143 Financial Impact on Family Paying for Patients Care ................14 4 Proportion of Family Savings on Patient Care . . . ......144 Proportion of Income/Savings Left for Patients Spouse After Paying for Care . . . . . .. ...144 4-10. Assessment of Health Care Professionals Role in Caring for Patients With Alzheimers or Another Dementing Illness ........147 4-11. Number of physicians Seen by Patient To Diagnose or Treat the Dementia . . . . . .. ..147 4-12. Frequency of Patient Visits to a Physician Who Treats Patients With Dementia ..................14 7 4-13. Amount of Trouble Finding a Doctor To Care Adequately for Patient With Dementia ..................14 7 4-14. Level of Satisfaction With Care Patient Currently Receives From Doctor(s) . . . . . .. ..147 4-15. Caregiver Rating of Family Doctors 4-16 Knowledge of Care of Persons With Dementia ..................14 8 Assessment of Importance of Certain Services To Be Provided to Patients With Dementia, Regardless of Cost and Current Availability ..........149

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Chapter 4 The Family Families provide most of the care of the impaired elderly and act as the advocates for persons with dementia (1)30,65). They are appealing for relief from the burdens of patient care (1,74). Their appeals coincide with efforts to control public health care expenditures, including determining how much financial responsibility families should assume for the care of the elderly ill. Caregiving families are also receiving attention, as recent studies begin to show that the characteristics of a family are as important as those of the person with dementia in determining which individuals will be institutionalized (16). This chapter examines the impact of dementing diseases on caregiving families and discusses l rhis chapter is a contract report h} Nan[j \lace, consultant in gwmntolog~l TOWSOII, 3111 A PROFILE OF Who provides How Much and What Kind of Care in Which Families? Extent of Care Studies of the dependent or frail elderly show that family caregivers provide 80 to 90 percent of the care of these individuals (10). Even though the United States is a mobile society, most elderly persons live near at least one family member and see that person frequently (66). Families do not abandon the ill to institutions; they avoid placing their relatives in nursing homes as long as possible, often at great cost to themselves. Indeed, many nursing home placements are not only appropriate, but should have been made sooner (51). Studies that focus on caregivers of persons with dementia confirm that families also provide the majority of care. The Secretarys Task Force on Alzheimers Disease reported that most people with dementing illnesses are cared for by their families for the majority of their illness (77). The tasks of caring for a person with dementia are the potential effect of policy options. The first section asks: l l l l Who provides how much of what kinds of care and services to individuals with dementia? What is the impact of the disease on the family? Are the burdens caused by dementia unique to the condition or similar to those created by other long-term chronic illnesses? How will changing patterns of family life af feet the availability of caregivers in the future? The second section focuses on helping families and considers whether the family can be assisted to provide more care at a savings to the taxpayer. The last section examines six options available to the Federal Government to assist or support families. FAMILY CARE constant. A significant number of caregivers of dementia victims spend more than 40 hours a week in direct personal care (54). In fact, a popular book refers to caregiving as the 36-hour day (44). At the same time, persons with dementia are overrepresented in nursing homes (8). Many are placed there after having exhausted those caring for them: In the overwhelming majority of cases, nursing home placement occurs only after responsible family caregivers have endured prolonged, unrelenting strain (often for years), and no longer have the capacity to continue their caregiving ef forts (12). Others have outlived their caregivers. Individuals who have no children or whose spouse becomes ill or dies are much more likely than Those with families to be in nursing homes (8,45). To learn more about family caregivers and how they obtain help, OTA surveyed 2,900 persons on the Alzheimers Disease and Related Disorders 135

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136 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias Association (ADRDA) mailing list. (See ref. 82; the study is referred to in this chapter as the OTA study.) Table 4I indicates the living arrangements of those with dementia identified in this study. Although 39 percent were currently living with a family caregiver, 50 percent had lived with relatives at some point in their illness. (This figure does not include those living in their own home and cared for by a spouse,) Thus, over the long course of a dementing illness, many people will be at home for part of their illness and in a nursing home or similar residential setting for part of the time. Care providers Within Families One definition of the family is: that group of individuals [who] are related by blood or marriage. The family may include those persons somewhat distantly related by blood or marriage, such as cousins of various degrees or in-laws, all of whom may be perceived as family members. Further, for any one person the family network is not static. It may expand to include even more distant relatives as a need arises for information, services, or help from these relatives (66). A family caregiver may include individuals unrelated by blood or marriage but sharing in a relationship of intimacy and support. Family does not necessarily refer to persons sharing a household or living nearby it may include someone living at great distance who is in close communication. Within the white middle-class family, one individual usually assumes most of the tasks of carTable 4-1 .Where The Person With Dementia Lives Where the person with dementia lives: Total respondents With primary caregiver (if other than you) or with you. ., 39% In a nursing home. . . ., 33% Patient now deceased ., . . . ., 17% Alone ., . ., . ., ., 4% In a foster, personal care, or boarding home . 3% In a Veterans Administration home or hospital. ... 1% With someone else ., . . ., 1% Not applicable ., . ., 1% NOTE Percentages rounded to nearest whole number SOURCE Yankelowch, Skelly, & White, Inc Caregwers of Patients WNh Dementia, contract report prepared for the Office of Technology Assessment, U S Congress, 1986 ing (51), Studies show that when the disabled individual is married, the caregiver will most often be the spouse (one-third to one-half of all caregiversmost of whom are women); when there is no available spouse, adult daughters or daughtersin-law assume the role. (One-quarter to one-third of the caregivers are adult children.) The remainder are other family members or unrelated persons. In the absence of immediate family members, often a sibling or the adult child of a sibling will assume primary responsibility for the patient (18,26,83). Even friends and neighbors occasionally act as primary caregivers (68). The patterns of family caregiving may be different for other socioeconomic or cultural groups (33,37,42). Little is known about the ways in which other family memberswhether living nearby or far awayhelp the primary caregiver, although it is clear that they do help (.59,71). Anecdotal information reveals that many family members who live further away also are actively involved in care plans. More women than men are primary caregivers. This is in part because of womens traditional roles and in part because wives tend to be younger than their husbands. (Men are closely involved in care, but often their tasks and investments of time are different.) Nevertheless, many husbands and sons are providing around-the-clock intensive personal care. Most caregivers are middle-aged. The 1982 Long-Term Care Survey found that the average age of caregivers was 57 years, with one-quarter aged 65-74, and 10 percent aged 75 or over (69). They are persons with numerous responsibilities, which may include the care of other dependent elderly, children, grandchildren, and spouses. Thus the difficulties they experience by helping a relative with dementia may affect many lives. Caregivers are often employed, and they often are beginning to experience chronic illnesses associated with their own aging (10). The Long-Term Care Study found that one-third of caregivers rated their health as fair or poor (69), Spouse caregivers are often as old as or older than the ill person and may have chronic illnesses of their own. They may be unable to meet the physical demands of caregiving. One program found that caregivers

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Ch. 4The Family 137 using home respite care were much older than the average recipients of all programs (56). Although this profile encompasses the majority of caregivers, the diversity among caregivers is striking (34), A few eIderly parents are caring for middle-aged sons and daughters with a dementing illness and a significant number of younger spouses are caring for both a young victim and young children. More information about how families provide care is needed if successful services for them are to be developed. The diversity among caregivers indicates that no one service will serve all families. Kinds of Care Families provide a wide range of care: from giving advice and acting as a confidant, to providing financial help and total personal care. Family care is highly flexible. Unlike formal support services, families provide care at night, over weekends, and on demand. The care they give is individualized to meet the idiosyncratic needs of the person with dementia (23). The care provided changes as the illness progresses. Early in the course of the disease, families must make decisions for the individual and take over shopping, meal preparation, banking, and legal and financial responsibilities (44). Later, families must assume responsibility for personal tasks such as dressing, bathing, and eating. Because the individual is usually ambulatory but has impaired judgment, round-the-clock supervision is necessary. Many persons with dementia are awake and active at nightthe OTA study found that 17 percent were out of bed most nights and therefore their caregivers must also be awake. After a time, caregivers must assist persons with dementia to walk (or must lift those who become bedfast) percent of the individuals in the OTA study were living with family and were bedfast. Many must help these persons use the toilet; others manage complete incontinence (14 percent of the persons in the OTA study were incontinent and were living with family caregivers). For most of the illness, persons with dementia appear unaware of their need for help and may respond to assistance with anger or resistance. They may accuse a caregiver of stealing from them or trying to harm them. Many patients are unable to express any appreciation for their care. They may fail to recognize a spouse or child, or may exhibit bizarre behaviors that complicate the tasks of personal care. Families report a long list of difficult and upsetting behaviors (see table 4-2). In addition, the tasks of caring remind the caregiver Table 4-2 .Patients Behavior Problems Cited by Families Families reporting Number of Families reporting the behavior and families the behavior citing it as a problem Behavior reporting No. ( 0 /0) No. ( 0 /0) Memory disturbance . . . . . . . . . 55 55 (loo) 51 (93) Catastrophic reactions . . . . . . . . 52 45 (87) 40 (89) Demanding/critical behavior. . . . . . . . 52 37 (71) 27 (73) Night waking . . . . . . . . . . 54 37 (69) 22 (59) Hiding things . . . . . . . . . . 51 35 (69) 25 (71) Communication difficulties . . . . . . . 50 34 (68) 25 (74) Suspiciousness . . . . . . . . . . 52 33 (63) 26 (79) Making accusations. . . . . . . . . . 53 32 (60) 26 (81) Needing help at mealtimes . . . . . . . 55 33 (60) 18 (55) Daytime wandering . . . . . . . . . 51 30 (59) 21 (70) Bathing . . . . . . . . . . . . 51 27 (53) 20 (74) Delusions . . . . . . . . . . . 49 23 (47) 19 (83) Physical violence . . . . . . . . . . 51 24 (47) 22 (92) Incontinence. . . . . . . . . . . 53 21 (40) 18 (86) Cooking . . . . . . . . . ... . 54 18 (33) 8 (44) Hitting . . . . . . . . . . . . 50 16 (32) 13 (81) Driving . . . . . . . . . . . . 55 11 (20) 8 (73) Smoking . . . . . . . . . . . 53 6 (11) 4 (67) Inappropriate sexual behavior . . . . . . . 51 1 (2) o (o) SOURCE: Adapted from P.V. Rabins, N.L. Mace, and J.T. Rabins, The Impact of Dementia on the Family, Journa/ of the American Medical Association 248:334, 1982.

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134 Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias of the deterioration of a loved one. The experience of ongoing grief was described by one family member as the funeral that never ends [29). Even after someone has been placed in a nursing home, families continue to visit, assist staff, wash and mend clothing, dress the person, take him or her for walks, pay bills, handle money, and, finally, continue to give love and affection (18). For many caregivers, the year following placement in a nursing home may be as stressful as the years of caregiving (27). Many families cover all the expenses of a relative placed in a home: half the total cost of nursing home care is borne by patients and their families (4). That figure does not include extras such as laundry, haircuts, toiletries, and sometimes medication. Families That provide Care Because there is no known racial or socioeconomic variation in the prevalence of Alzheimers disease (47), the families that provide care are believed to represent all groups. Racial and socioeconomic differences have been found by clinical practice and in voluntary organizations, but these may reflect variations in knowledge of the disease, access to services, and ways of obtaining help rather than real variations in prevalence. Little is known about patterns of elder care among minority groups. In States where the demand for nursing home beds exceeds the supply, facilities are able to selectively exclude undesirable patientsthose who are receiving Medicaid, for example, or those who are difficult to care for (72). Since individuals with dementing illnesses are perceived by nursing home staff as difficult to care for, and since minorities are overrepresented among the poor, these persons are least likely to find a nursing home (38). Other characteristics of the caregiving situation also influence the decision to place an individual in a nursing home (16). Spouses who depend on the patient pension or who cannot afford a nursing home have little choice except to care for the person at home. These economic realities may operate in concert with strong cultural values of the importance of caring for family. Many patients do not have family members available who can provide care. An estimated 7 million older people have no family, have families that are not nearby, or have family relationships that have long been impaired (8). As many as half the people living in unlicensed (and therefore uncounted) boarding homes, hotel rooms, foster homes) and single-room occupancy hotels have dementing illnesses (8). These individuals also are less likely to have family members who could care for them or oversee the quality of the care they are given. Thus, a significant group of persons with dementia are at risk of exploitation, abuse, or neglect because they have no relatives to speak for them. What Effect Does Caring for a Dementia Patient Have on the Family? Reports from families of dementia victims are filled with accounts of the severe pressures created by these illnesses (30). The Secretarys Task Force on Alzheimers Disease stated that: the extremely debilitating and chronic nature of Alzheimers disease places a tremendous financial and social burden on family caregivers (77). One observer found that: persons with dementing disorders contribute to the community burden disproportionately. This demonstrates that the observations in clinical settings represent only the tip of an iceberg of unknown shape and size (68). Several studies have sought to measure and describe the impact on families. Researchers unanimously report enormous and prolonged demands. Caring for a person who has a dementia often has an adverse effect on: l the caregivers physical and mental health (28,61), l the caregivers participation in recreation and social activities (62), l the family living arrangements (26), l the caregivers employment status (73), and l the caregivers financial security (73). Some of these and other studies have sought to identify the aspects of care that influence a care-

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Ch. 4The Family l 139 givers feelings of burden. They have found that the burden a caregiver experiences maybe influenced by the persons relationship (husband, wife, son, daughter) to the person with dementia (26), by whether caregiver and patient share a residence (10), and by the emotional support the caregiver receives from other members of the family (84). Symptoms of mental impairment, disruptive or (acting out behaviors, extent of need for personal care, and the number of disruptive behaviors all increase the caregivers stress (59). There is no direct relationship between stress and a familys decision to use a nursing home, although stress may be a factor (see below). Further study is needed to answer several questions: l l l l l l l To what extent do the problems families facepoverty, the presence of children who need care, the demands of jobs, divorce, crowded living arrangements, unhappy family relationships, loss of a caregivers income interact with and compound their burden? In what ways is the burden of caring for a person with primarily mental or behavioral symptoms different from caring for a person with a physical disability? Why do a few families not report distress? Why do some persons with dementia not exhibit the disturbed behaviors commonly reported? Do some families have better resources that allow them to manage? If so, what are they money; health; coping strategies such as religious faith, humor, cognitive restructuring skills? Does the duration of the illness affect feelings of burden? What are the special needs or problems of rural, minority, or socioeconomically disadvantaged families? There are significant weaknesses in the design of some of the studies to date. For instance, most have examined white middle-class families. Little is known about the effects of caregiving on rural, minority, and impoverished families. Physical and Mental Health Because dementia is most prevalent late in life, caregivers are often elderly spouses or adult sons and daughters who are themselves entering early old age, with their own age-related health problems (10). One report noted that three-fourths of the adult sons and daughters of dependent elderly entering the Philadelphia Geriatric Center were in their fifties or sixties (8). Caregivers report that the tasks of caring have a deleterious effect on their health (61). One-third of the caregivers in a national study of people caring for the frail or disabled elderly rated their own general health as fair or poor (69). They report illnesses resulting from exhaustion and stress, as well as injuries resulting from the physical tasks of caregiving (17). When caregivers are compared with groups of similar individuals who are not caring for an ill relative, those living with an ill person tended to have poorer health. Men with ill wives are more likely than an aged-matched control to die prematurely of stress-related diseases (26). The OTA study found that 12 percent of the caregivers who were living with the person with dementia reported becoming physically ill or being injured as a result of caring for the person. That is a significant hazard, especially for wife caregivers who are smaller than a husband who has dementia. Studies report high levels of depression among caregivers (25)40,60,62,81). These studies also find that many caregivers feel angry and guilty and are grieving. They report increased levels of family conflict. People caring for someone with dementia have three times as many stress symptoms as people of the same age who are not caregivers, and they report lower life satisfaction. Caregivers used more psychotropic drugs (sleeping medications, tranquilizers, and antidepressants) and more alcohol than comparison groups (28). Women who have given up a job to care for a parent experience poorer physical and mental health than other women (10). In the OTA study, 35 percent of caregivers who were living with the patient reported becoming very stressed and 11 percent of the primary caregivers sought the help of a counselor or psychiatrist. Participation in Recreation and Social Activity Closely related to mental health is the time caregivers spend in recreation and social activity and

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140 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias their feelings of satisfaction from leisure activities. Often the tasks of giving care fill their days, allowing no time for recreation (62). The patients bizarre behaviors and need for constant supervision further limit opportunities for social activity. Caregivers lose friends and give up hobbies. They become isolated by the need to provide fulltime caregiving. Yet a caregivers need for social contact is underscored by studies showing that his or her feeling of burden is related to the amount of support given by others. Caregivers who felt well supported by friends and family had fewer feelings of burden than those who did not feel supported by others (7,84). One study reported that support from others had a greater effect on caregivers feelings of burden than did any other factor, including patient behavior and level of cognition (84). Living Arrangements Neither elderly individuals nor their adult children prefer living in three-generation households. Instead, where possible, at least one adult child lives near the parents (65). However, the situation may be different for the families of persons with dementia. Unlike many other chronically ill persons who can be left alone for brief periods of time, individuals with dementia need constant supervision. Therefore, the family may have no choice but to share a household in order to watch the person day and night. Data tend to support this hypothesis: The greatly or extremely impaired are more likely to be in shared households (65). And shared households have been linked with the symptoms common to dementia (63). The OTA study found only 4 percent of persons with dementia living alone. The 1982 National Long-Term Care Survey found that almost three-quarters of caregivers in a nationally representative sample of people helping frail and/or disabled persons lived with the care recipient (69). Sharing a household with the impaired elderly may lead to increased family conflict, poorer caregiver health, and greater caregiver stress (10,26). Shared households more often include children of the caregiver. The demands of a behaviorally disturbed elder and the needs of children may interact to increase the caregivers stress. Employment Status Twenty-eight percent of the nonworking women in one study had quit their jobs in order to care for an aging parent, and an equal percentage of working women were considering doing S. (10). The women who had left employment had parents who were older. They more often shared their household with a parent, and the parents more often were cognitively impaired (i.e., had symptoms of dementia and scored lower on a standard mental status test). Caring for a parent had resulted in a greater deterioration in these womens physical and mental health, and their families had lower incomes. The OTA study found that there was an employed person in 14 percent of households and that in 12 percent someone, almost always the primary caregiver, had stopped working in order to care for the person with dementia. The Travelers Insurance Co. conducted a study of employees at its Hartford, CT, headquarters and found that 28 percent of the full-time employees spent an average of 10.2 hours a week caring for an aged relative, while 8 percent devoted 35 hours a week to care (49). Those who quit work are only part of a much larger group. The 1982 National Long-Term Care Survey found that: among the one million caregivers who had been employed sometime during the caregivers experience, one-fifth cut back on hours, 29.4 percent rearranged their schedules, and 18.6 percent took time off without pay to fulfill caregiver obligations (69). Another study (52) found that higher percentages of the adult-child caregivers with children in the household were employed either part-time or full-time, particularly when the caregiver was divorced or separated. It is likely that the costs of child rearing necessitate the employment of many middle-aged women in three-generation households. Despite their multiple roles as spouse, parent, and primary caregiver, half these women were also in the labor force. In the summer of 1986, the Family Survival Project conducted a study of employed caregivers of persons with dementia. Preliminary data from that study indicate that many caregivers are leaving employment to provide care (24).

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Ch. 4The Family l 141 Financial Impact The Maryland Report on Alzheimers Disease and Related Disorders states that: the financial burdens of dementing disorders can be particularly devastating the caregiver is faced with the prospect of wearing himself or herself out or spending large amounts of money for home nursing aides or nursing home placement (30). The financial burdens include loss of the ill persons salary; denial of his or her disability or retirement income; loss of the caregivers salary; the costs of home or respite care (which are generally not covered by insurance, Medicare, or Medicaid); and the costs of nursing home care (also rarely covered by insurance or Medicare). The 1982 National Long-Term Care Survey found that almost one-third of caregivers had incomes within the poor or near poor category (69). Many families lose the salary of the person with dementia. Although the disease is more common among people who are likely to be retired, it strikes many people during their peak earning years. The percent of individuals who lose a job due to a dementia is not known and can only be inferred from epidemiologic data. The OTA study found that 11 percent of the persons with dementia had applied for Old Age and Survivors Disability Insurance (OASDI) and 7 percent had applied for disability pension from an employer, one indicator of employment status at the time of the onset of the illness. In addition, many women with dementia had been homemakers at the onset of their illness (18). Since someone else must assume housekeeping tasks or a homemaker must be hired, that loss must also be considered in economic terms. The onset of the disease is gradual and insidious, often going unnoticed or misunderstood. Therefore there may be a substantial number of individuals who leave employment or are asked to take an early retirement because of inadequate job performance. Some people have lost a job, only to try several more jobs unsuccessfully before the dementing illness is discovered (18). Researchers and disability examiners both report a long litany of problems caregivers face in obtaining disability and retirement benefits on behalf of an ill person (18,21). Some individuals have been fired because the disease was not recognized; others quit their jobs before a diagnosis had been made. Thus, an unknown number of persons with dementia may sometimes be denied disability or retirement benefits. In addition, some families, already exhausted by caregiving, have had to make repeated appeals to obtain benefits (18). people with a dementing illness are often unable to learn a new, less difficult skill, and therefore may be totally disabled early in the illness. An Institute of Gerontology study mentioned one man who was reduced from supervisor to work crew, then to janitor but who was unable to function successfully at any level (18). Farm and unskilled laborers may be disabled as completely and quickly as persons with technical or professional skills. The same study described a farmer who: would take hours to do simple chores. He wouldnt be able to find farms where he was contracted to haul cattle and other livestock. He didnt know what to do when he got there. He needed help getting to the stockyard and doing routine things when he got there. As indicated earlier, a significant number of family members give up jobs to care for the patient. Families with lower incomes are more likely to experience the loss of a caregivers salary (10). Table 4-3, taken from the OTA study, shows the amount of salary lost by those who quit a job to care for a person with dementia. These data agree with reports that low-income women are more likely than higher-income women to quit a job to care for an aged parent (10). Families face the financial burdens of care that extend over many years. Insurance or Medicare usually covers the Table 4-3.-Amount of Salary Lost by Family Members Who Quit a Job to Care for a Person with Dementia Approximate amount of salary lost Total respondents Less than $4,999 . . . . . 23% $5,000 to $9,999 . . . . . 17% $10,000 to $14,999 . . . . 12% $15,000 to $19,999 . . . . 18% More than $20,000 . . . . 11% Did not answer . . . . . 20% NOTE: Percentages rounded to nearest whole number. SOURCE: Yankelvich, Skelly, & White, Inc., Caregivers of Patients With Dementia, contract report prepared for the Office of Technology Assessment, U.S. Congress, 1986.

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142 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias costs of diagnosis and physician care, but that represents only part of the total. The financial burden on family caregivers has been widely documented (18,30,75). In addition to the loss of income, individuals with dementia often give away, hide, or spend money needed for their long-term care. Half the total costs of nursing home care are borne by residents and families (4), Most respite and home care programs, when available, depend on client fees or private sources (30). The care of persons with dementia in such programs usually does not qualify as medical (skilled nursing) care and therefore is not reimbursed by Medicare; nor is it tax deductible. Day care programs that focus on service to people with dementia report less use of Medicaid than programs that serve other frail elderly, and almost no use of Medicare (46). The OTA study found that no respondents had been reimbursed by either Medicaid or Medicare for a visiting nurse or day care program. Many families in the OTA survey (11 to 31 percent by program) did not use available services because they were too expensive. Families caring for a person with dementia also pay for renovations to make their home safe for the resident and for overthe-counter medications, diapers, special diets, and supportive devices, many of which are not covered by Medicare. Although the ill persons own income and assets appear to be used first, 29 percent of the respondents report that a spouse was contributing to the cost of care, and one in five report that children and other relatives contribute to the cost of care (see table 4-4). One family in four reports that all the patients savings had already been spent on care (table 4-5) and half expected that all or most of the patient savings would eventually be spent (table 4-6). Those who had been ill longer were more likely to have expended their savings. The financial impact on family varies. Half report that there has been no impact thus far or that they had been able to handle extra expenses fairly easily. However, 22 percent report not being able to make ends meet or having to cut back sharply on expenses (table 4-7). Nearly 20 percent of families had spent all or at least half the familys savings on care; another 21 percent had spent less than half (table 4-8). Spouse caregivers are more likely to be impoverished than other family members. one-third of families report that the person with dementia relies on the spouse for support, and 15 percent report that very little of the couples income was left for the well spouse (table 4-9). That agrees with the finding of another study that spouse caregivers are disproportionately impoverished (26). Between one-fourth and one-third of families surveyed in the OTA study reported that they were facing the early stages of the relatives illness when financial drains are not so great as when he or she is in a nursing home. When families were surveyed by another study 2 years later, more reported a serious financial impact (26). Thus more families in the OTA sample can be expected to become impoverished or experience a significant impact of the cost of care in coming years. Programs that provide assistance and see families after they have provided care for many years report higher percentages who are severely affected by the burdens of care. A Massachusetts study found that two-thirds of individuals and one-third of couples aged 66 and older would spend themselves into poverty within 13 weeks if stricken by a chronic illness that required long-term care (74). Clearly, not only does the impact fall most heavily on spouses, but it is also heaviest when the person must be cared for in an institution. Because persons on the ADRDA mailing list cannot be assumed to be representative of all persons caring for someone with a dementing illness, the findings of the OTA study must be regarded as preliminary. Furthermore, many of the caregivers who responded to the survey did not answer the questions about expenses, making these findings on costs much less reliable (see table 49). For these reasons, it is likely that the data in these tables underreport the financial impact on families. The OTA study also asked families what sources of funds helped support the person with dementia or pay for the persons care and what percent of care was provided by each source (see table 4-4). Of all families surveyed, 70 percent report

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Ch. 4The Family 143 Table 4-4.Sources of Income Used To Support Person With Dementia a Percent of total respondents reporting Mean Source this source b contribution Patients Social Security . . . . . . . . . . . . . 700/0 38% Patients own savings, income from assets . . . . . . . . . 530/0 46 Other retirement/pension income of patient . . . . . . . . . 32% 34% Patients spouse . . . . . . . . . . . . . . 30% 11% Medicare . . . . . . . . . . . . . . . . 29% 19% Medicaid . . . . . . . . . . . . . . . . 15% 9% Patients children . . . . . . . . . . . . . . 15% 240/0 SSl (Supplemental Security Income) . . . . . . . . . . 6% 37% Veterans Administration . . . . . . . . . . . . . 5% 67% OASDI or other disability payment . . . . . . . . . . . 4% 23% Contributions from other relatives . . . . . . . . . . . 4% 13% Other . . . . . . . . . . . . . . . . . 4% 37% aMOSt families report having more than One Source Of income bDoes not indicate percent of contribution by SOllrCe CRe~pondents were asked what percent of th e person$~ overall suppo~ was from each source, These responses were summed to obtain a mean SOURCE Yankelovich, Skelly, &Whfle, lnc, Caregivers ofPatientsWith Dementia, contract report prepared fortheOffIceof Technology Assessment. U S Congress, 1986 Table 4-5.Amount of Patients Savings Spent on Care Since Becoming III Total How much of patients savings spent respondents ( O / O ) a All or most . . . . . . 23 % A large amount (at Ieast half) . . 16 % Some but less than half . . . 28 % None . . . . . . . 14% Patient had no savings . . . 9% Did not answer . . . . . 12% apercent based on total sample NOTE Percentages rounded to nearest whole number, SOURCE Yankelovich, Skelly, &White, inc. Caregivers of Patients With Qwnentia;contract reporl prepared forthe Office ofTechnology Assessment, US Congress, 1986 Table 4-6.Proportion of Patients income/Savings Expected to Eventually Go for Care Total How much expected to go for care respondents ( O / O ) a All or most . . . . . . 51 % At least half . . . . . . 15 % Less than half . . . . . 8 % None . . . . . . . 7 % Did not answer . . . . . 20 % apercent based on total Safnpie NOTE Percentages rounded to nearest whole number. SOURCE Yankelovich, Skelly, &White, lncv Caregivers of Patients With Dementla,contract repotl prepared forthe Office ofTechnology Assessment, U.S Congress, 1986. that the patients social security is a source of income. Among those who receive social security, it accounts for an average of 38 percent of their income. On the other hand, Veterans Administration funds account for an average of 67 percent of a persons income, but only 5 percent of individuals rely on VA funds. Few patients rely on financial help from their children, but those who do report that an average of one-fourth of the ill-persons income comes from the children. Thus, families do make major contributions to care and are able and willing to share in the cost of care. At the same time, government funding sources are an essential resource. Not all families rely on sources such as Medicaid for patient care, but financial demands increase with the progression of the disease. The burden of care can quickly exhaust the resources of persons with dementia and impoverish their families, especially those most vulnerablespouses, female heads of household, and minorities (see ch. 12)and ultimately have a significant effect on the resources of many families. Families have charged that Medicaid and Medicare standards contain biases and restrictions that mitigate against persons with dementia, against women caregivers, and against home care as opposed to nursing home care (13,18,30,51,70). Except for physician care and medications, most persons with a dementing illness do not need the medically oriented care Medicare/Medicaid call skilled until late in their illnesses. The care they need is termed custodial by Medicare and Medicaid; it does not qualify them for Medicare coverage in nursing homes, or for home health care.

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144 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias Table 4-7.Financial Impact on Family Paying for Patients Care Which statement best describes the financial impact on your family? Total respondents We have had to cut back sharply on expenses and still cant make ends meet. . . . . 5.7 /0 We have had to cut back sharply on expenses but have been able to make ends meet . . . 16.20/o We have had to do without some things but are getting by. . . . . . . . . . 7.5% We have been able to pick up the extra expenses fairly easily . . . . . . . . 14.5 /0 So far there has been no impact; we have not had to contribute to the patients support. . . 34.5 /0 Did not answer . . . . . . . . . . . . . . . . . . 28.00/o aMore than one response was allowed. SOURCE: Yankelovich, Skelly, & White, Inc., Caregivers of Patients With Dementia, contract report prepared for the Office of Technology Assessment, U.S. Congress, 19W. Table 4-8.Proportion of Family Savings Spent for Patient Care Portion of family savings Total respondents All or most . . . . . . 90/0 More than half . . . . . 10 /0 Less than half . . . . . 21 /0 None . . . . . . . 47 /0 No answer . . . . . . 140/0 NOTE: Percentages rounded to nearest whole number. SOURCE: Yankelovich, Skelly, & White, Inc., Caregivers of Patients With Dementia, contract report prepared for the Office of Technology Assessment, U.S Congress, 19S6. Table 4.9.Proportion Patients Spouse of Income/Savings Left After Paying for Care for Proportion of income/savings left Total respondents All or most . . . . . . 17 /0 About half. . . . . . . 190/0 Some but very little . . . . 15 /0 Patient has no living spouse. . . 70/0 Did not answer . . . . . 43 /0 NOTE: Percentages rounded to nearest whole number, SOURCE: Yankelovich, Skelly, & White, Inc., Caregivers of Patients With Dementia, contract report prepared for the Office of Technology Assessment, U.S. Congress, 19SS. In some States it means that the care of persons with dementia in nursing homes is reimbursed at lower rates by Medicaid. Families and professionals have argued that considerable skill is needed to care for these persons successfully (30) and custodial rates are too low to provide the care needed by people with dementia. Certain groups are especially vulnerable to the financial biases of some government programs. Although the financial well-being of the elderly in general has improved, aged female heads of households remain impoverished (79). It is these women who are most likely to give up a job to provide care for a person with dementia (11) and who can least afford to lose income. Women are much more likely than men to receive no retirement pension or only Supplemental Security Income (SSI)$325/monthbecause many older women did not work outside the home or worked only as domestics (18). Women are more likely than men to be widowed and therefore to have lost the pension on which they depended. Daughters caring for an aged parent in a household without a male wage-earner and retired couples on a fixed income also report high levels of financial burden. The Maryland State Office on Aging found that Medicaid policy is inadvertently biased against wives (13). Since many women in the older cohorts of the elderly were never employed, they depend on their husbands retirement income, almost all of which must be paid for his nursing home care if he is to qualify for Medicaid. The wife then becomes eligible for SSI, at a much lower standard of living, often after she has devoted years to her husbands care, In contrast, when a wife with no income of her own is institutionalized, 23 States do not require the husband who continues living in the community to spend his pension on her care. He can continue to live at his previous standard of living (see ch. 11). Efforts to encourage alternatives to nursing home care can also result in inadvertent discrimination. Programs that fund in-home care often require clients to meet criteria for skilled nursing care. That requirement is to ensure that home care replaces institutional care and does not become an add-on service. Persons with dementia, excluded by the skilled-nursing language, are thereby unable to use these programs until they are too severely ill to be managed at home,

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Ch. 4The Family l 145 In some States, Medicaid considers room and board provided by a caregiving family to be part of the applicant income. That effectively makes the income of persons living with family members higher than that of comparable persons living alone or in a nursing home. Family caregivers complain that this method of calculation is inequitable since persons with dementia cannot live alone. Families report being given incorrect or conflicting information when they have applied for Medicaid. Such problems produce further stress, and may have resulted in the unnecessary impoverishment of caregivers. The extent of this problem is difficult to document, although complaints are common (14). Medicaid law is convoluted and difficult to understand. It is a mix of Federal and State statutes and varies from State to State (14). The minutes of the Governors Task Force on Alzheimers Disease in Maryland reveal that even experts disagreed on their interpretations of that States Medicaid law (30). Anecdotal reports tell of different Medicaid offices within a State giving different information, nursing home staff giving incorrect information about eligibility, families being required to pay private rates for nursing home care after being incorrectly told that the patient was not eligible for Medicaid, and families being required to make a donation to nursing homes or to sign agreements to pay at private rates. The OTA study found that of the 164 families who had applied for Medicaid, 38 percent had encountered problems; 22 percent could not get a clear explanation of the eligibility rules, and almost 9 percent said they were treated rudely. Of those who applied for Medicaid, 38 percent were told by the Medicaid office that the spouse must provide support, although 23 States do not hold spouses responsible for long-term care. ADRDA chapters report numerous spouses who were required to support a patient in nursing homes, often for many years, even in States in which spouses are not responsible for support after the first month (2,3). Among families who sought to place relatives in a nursing home, the OTA study found that 12 percent were told they must make a donation to the homea practice that violates Federal policy in homes accepting Federal funds. One-third were asked to sign agreements to pay privately. (Eleven different attorneys general in States with Federal support have issued opinions holding that Federal law makes it a felony to require a person who is Medicaid-eligible to agree to pay privately) (15). Varying Impact on Spouses, Adult Children, and Young Children Although studies have shown that men and women, adult children, and spouses experience burden in different ways, the research has covered only a narrow socioeconomic subgroup. Differences between economic or racial groups may be greater than those between the sexes or by relationship. Much more significant than these differences is the number of caregivers of all types who are significantly distressed. Nevertheless, if supportive services are to be targeted effectively, the differences among caregivers must be better understood. Little is known about the number of children living with or near a person with dementia or about the impact of these diseases on children, Younger persons with dementia often still have young children or adolescents at home. Many individuals live in three-generation families, where grandchildren grow up in the presence of a person with dementia; a national survey of caregivers of the frail or disabled elderly found that onequarter of the caregiving sons and daughters had children in the household (69). One commentator has stated, problems and role changes experienced by one family member affect every other family member and each person in the family feels the repercussions (9). Thus even children not living with the ill person may experience the effects of their parents burden. The 36-Hour Day (44), a guide for families of persons with dementia, identifies some of the common problems encountered when children or adolescents share a home with a person with dementia. When the childs parent is the primary caregiver, parenting roles may be diminished by the demands on the exhausted caregiver. Caregivers often cannot leave a person with dementia

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146 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias in another room for even a few minutes, so finding time to talk alone with a worried child can be difficult. Family activities may cease because no sitter can be found for the ill person; family meals and sleep may be disrupted by disturbed behavior during the years a child is growing up. Many caregivers are also employedoften of necessityadding to the burdens of both caregiver and child (52). Disoriented and distressed people with dementia may punish a child unjustly, or may berate an adolescent for being a hippie, lazy) or a thief They may yell or curse. Their behavior may make a child too embarrassed to bring friends home. Because the person cannot control his or her behavior or learn not to act that way, children may have no choice but to put up with itand with little support from their exhausted and depressed parent. The number of children touched by a dement ing illness maybe quite high. The OTA study found that 6 percent of persons with dementia currently living in a family household shared the home with children. Many more children may have shared a household with a person with dementia at some point. The Travelers Insurance Co. surveyed its employees who were caring for an elder family member and found (that 52 percent of those giving care were adults between the ages of 41 and 55, many of whom were attempting to satisfy the needs not only of elderly parents but also those of their own children (49). A study of schoolchildren found that 25 percent had an elderly family member who was not mentally alert and that these children had more negative attitudes toward aging than other young people did (67). Although many schools now offer courses in family life, many have little or no material about abnormal aging. The Maryland Report on Alzheimers Disease and Related Disorders, for example, found no material in the Maryland school curriculum about abnormal aging (30). In 1986 Maryland (HB173) and Virginia (HJR105) introduced legislation to correct that lack. It is the current generation of schoolchildren who will have to assume responsibility for vast numbers of the elderly with dementing illnesses. Varying Impact on Different Socioeconomic Groups As indicated, little information exists on the effect of dementing diseases on minority populations or on different socioeconomic groups. Studies of the minority aged indicate that the burden of a dementing illness may be experienced differently by different socioeconomic groups. Two general theories are postulated: that minority groups have stronger family ties and are more willing to keep their aged at home; or that the combined burdens of minority status, poverty, and age exacerbate the problems faced by these families. Minority groups tend to have lower incomes and more single women as heads of household. As mentioned earlier, both factors point to higher levels of caregiver stress. Such multiple disadvantages probably compound the struggle these families face. Blacks and Hispanics are underrepresented in nursing homes (42), which implies that informal caregivers are providing extensive amounts of care. It may also reflect the shorter life expectancy of blacks and significant inequalities in access to resources. Burdens Related to Public Policy or Access to Services Families report that there are few services to assist them in caring for a person with a demeriting illness, that the services that do exist will not accept persons with dementia, or that staff members of these services are not trained in the special care of persons with dementia (70). The OTA survey of ADRDA members asked several questions about use of services. Table 4-10 shows caregivers subjective assessment of health care for persons with a dementing illness. High proportions reported dissatisfaction with the service, a position consistent with the concerns expressed publicly and through ADRDA. The responses in tables 4-11 and 4-12 show that these persons made considerable use of physicians (although this sample cannot be assumed to the representative). Many respondents reported that professional caregivers were not knowledgeable

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Ch. 4The Fami/y l 147 Table 4-10.Assessment of Health Care Professionals Role in Caring for Patients With Alzheimers or Another Dementing Illness Strongly Strongly Not sure/ No What is your reaction to these statements? agree Agree Disagree disagree not applicable answer The assistance Ive received from health care professionals in caring for an individual with Alzheimers diseasehas been excellent. . . In my experience, most health care professionals know little about managing patients who have Alzheimers disease . . . . . . . . . . From what I have seen, a patient who is ill with dementi receives worse care from health professionals than a patients who are ill with something else . . . I have found it difficult to find satisfactory paid professionals to assist in caring for an Alzheimers patient at home . . . . . . . . . . . I really dont know where to go to get help in caring for an Alzheimers patient at home . . . . . In my view, the existing nursing homes where Alzheimers patients might live are inadequate in the care they provide . . . . . . . . . 8 29 23 12 19 9 21 36 20 2 13 9 15 24 30 4 20 7 25 26 8 1 29 11 20 28 21 3 17 11 20 30 20 4 19 8 NOTE: Percentages rounded to nearest whole number. SOURCE: Yankelovich, Skelly, & White, Inc Caregivers of Patients With Dementia, contract report prepared for the Office of Technology Assessment, U.S. Congress, 1986, Table 4-11 .Number of Physicians Seen by Patient To Diagnose or Treat the Dementia Number of physicians seen Total respondents 1 18% 2 to 3 : : : : : : : : : : : : : : : : : : : : : : : : : : : : : : 46% More than 3 . . . . . . 20 % Dont know/no answer . . . 17 % NOTE: Percentages rounded to nearest whole number SOURCE: Yankelovich, Skelly, & White, Inc., Caregivers of Patients With Dementia, contract report prepared for the Office of Technology Assessment, U S Congress, 1986 Table 4-12.Frequency of Patient Visits to a Physician Who Treats Patients With Dementia Frequency Total respondents At least once a month . . . 25% Several times a year . . . . 19% Only occasionally . . . . 27% Never . . . . . . . 16% No answer . . . . . . 12% NOTE: Percentages rounded to nearest whole number. SOURCE: Yankelovich, Skelly, & White, Inc., Caregivers of Patients With Dementia, contract report prepared for the Office of Technology Assessment, U.S. Congress, 1986. about care of patients with dementia, or that they had trouble finding a physician to care adequately for the patient (tables 4-13 and 4-14). While these figures represent a serious knowledge gap, equal Table 4.13.Amount of Trouble Finding a Doctor To Care Adequately for Patient With Dementia How much trouble had Total respondents A great deal of trouble . . . 17% A moderate amount . . . . 25% Only a little. . . . . . . 16% None at all . . . . . . 30% No answer . . . . . . 12% NOTE: Percentages rounded to nearest whole number. SOURCE: Yankelovich, Skelly, & White, Inc., Caregivers of Patients With Dementia, contract report prepared for the Office of Technology Assessment, U.S. Congress, 1986. Table 4-14.Level of Satisfaction With Care Patient Currently Receives From Doctor(s) How satisfied are You? Total responses Very satisfied. . . . . . . 25% Moderately satisfied . . . . 33% Only somewhat satisfied . . . 21% Not satisfied at all . . . . . 9% No answer . . . . . . 12% NOTE: Percentages rounded to nearest whole number, SOURCE: Yankelovich, Skelly, & White, Inc., Caregivers of Patients With Dementia contract report prepared for the Office of Technology Assessment, U.S. Congress, 1986. numbers of respondents who used a family doctor for care reported satisfaction with physician expertise (table 4-15). These findings may be an indication that some sectors are responding to the

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148 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias Table 4-15.Caregiver Rating of Family Doctors Knowledge of Care of Persons With Dementia Doctors rating Total respondents Very knowledgeable . ., . 17% Somewhat knowledgeable . . 53% Not knowledgeable . . . . 16% Dont know/no answer . . . 14% aA~On~ ~areglvers reporting that the patient sees a family doctor; base is ~ percent of those surveyed. NOTE: Percentages rounded to nearest whole number. SOURCE: Yankelovich, Skelly, & White, Inc., Caregivers of Patients With Dementia, contract report prepared for the Office of Technology Assessment, U.S. Congress, 19SS. demand for improved care of these individuals. However, the group surveyed may be better able to locate services than others who do not receive ADRDA newsletters and information. The informed family physician plays an important role in maintaining patient function (31) (see ch. 2). Pathologists (who conduct autopsies), ophthalmologists, podiatrists, and dentists who are knowledgeable about the care of confused persons are also important to families. The OTA report found that 64 percent of persons with dementia have been hospitalized at least overnight since becoming ill with dementia, but of these, only 41 percent of caregivers felt hospital care had been good. Twenty-six percent reported receiving fair care, and 21 percent said care was poor. Nineteen percent of families felt that the patient had been discharged from the hospital prematurely. The Family Survival Project in San Francisco, CA, points out that families often report a need for legal and financial advice and counseling. Families need help with wills, insurance, and property disposition (56). Lawyers and financial advisors received criticism for their lack of knowledge about the illness. OTA found that 60 percent of families had consulted a lawyer to obtain power of attorney or guardianship, but only 27 percent of them felt that the attorney was informed about the disease. Thirty -eight percent of families sought professional financial advice, with 29 percent of these reporting they found a knowledgeable consultant. Family members may work hard to get a confused person to visit a physician or lawyer. When that professional fails to offer appropriate help, families may be unable to persuade the confused person to visit a second professional. Caregivers gave nursing homes mixed marks. Fifty-four percent of families had applied for admission to a nursing home at some time; 30.5 percent of the patients had been in more than one home. Ten percent of these patients had been asked to leave a nursing home, usually due to their behavior. That response by nursing homes places great burdens on the caregiver who must find another resource for a hard-to-place and often severely ill individual. Such requests are often made suddenly; families have only a few days to find a new facility or arrange for care at home. Of those families using nursing homes, 18 percent say the care the patient received was excellent; 37 percent reported it to be good; 27 percent say care was average; and 16 percent said care was poor or very poor. Families who had placed a patient in a nursing home in the preceding year experienced greater stress than families who were providing care at home (33). Caregivers report a great need for services (ch. 6 discusses the availability and use of supportive services). Sixty-four percent of caregivers said that having the services of a paid companion in the home for a few hours a week to give the caregiver a rest is essential. However, more than 40 percent of the families ranked all services except domiciliary care as essential/most important. The rank order may be of less significance than the families overall need for a range of services. Many respondents reported that services were not available, but a surprising number were unsure about availability. Although that uncertainty may reflect a need for case management (see discussion of issue 3, ( Issues and Options section, below), it may also indicate absence of services. Almost half of caregivers report that visiting nurses or paid companions were available, but fewer than one in four thought that overnight respite, adult day care, or domiciliary care was available. Many reported that available services were too expensive (see table 7-4, ch. 7). In summary, the minimal availability of services, the difficulty in locating services, cost, and the absence of informed professionals can add sig-

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Ch. 4The Family l 14 9 nificantly to the burdens experienced by caregivers. For some family members, providing information about resources is not sufficient. Family members may be so demoralized that they are unable to negotiate the bureaucracy in search of help. The OTA study revealed that half of families ranked help in locating people or organizations that provide care for the patient as most important and 47 percent of families ranked assistance in applying for Medicare, OASDI, etc., as (most important (see table 4-16). Day care, home care, and other programs report large amounts of staff time spent helping families find other needed resources or giving shortterm, problem-oriented counseling even though their funding sources do not provide for such assistance. Typically, a day care program may offer the following services to one caregiver over a period of about 2 years: referral to a support group, referral to a dentist who cares for people with dementia, advice on behavior management, assistance in better coordinating the help of other family members, referral to a lawyer, referral to a private home health aide, short-term counseling, and, finally, help in selecting a nursing home. Thus, the current fragmented nature of the service providing system compounds the caregivers burden. The Impact Over Time For many caregivers the tasks of care may extend over 10 years or more (85). In this way dementing illnesses differ from many others. During such a long period, many changes may occur in the caregivers own status-employment, marriage, personal health, and childrenthat can af feet that persons ability to provide care. The nature of the illness and the demands it makes also change over time, The burden on families shifts but does not necessarily increase (86). Some families report that it is easier to care for a bedfast patient than for an agitated and wandering one. Others find that the physical effort of providing total personal care is more difficult. Such factors affect the familys continued ability to care at home. (Some of the hypotheses regarding the familys ability to care over time are discussed later.) Little is known, however, about the impact such prolonged caregiving has on the Table 4.16.Assessment of Importance of Certain Services To Be Provided to Patients With Dementia, Regardless of Cost and Current Availability Essential, very/most Very Not SO No important important Important important answer How important is it that these services be provided? %0 %0 % % % A paid companion who can come to the home a few hours each week to give caregivers a rest . . . . . . . . . . Assistance in locating people or organizations that provide care for the patient . . . . . . . . . . . . . Assistance in applying for Medicaid, OASDI, SSI, etc. . . . . Paid companion overnight care . . . . . . . . A home health aide-a person paid to provide personal care for a patient, such as bathing, dressing, or feeding in the home. ... . Support groups of others who are caring for persons with dementia Nursing home care special nursing home programs only for persons with dementia. . . . . . . . . . . . . Respite caretemporary round-the-clock care in a nursing home or hospital to care for the patient while the caregiver is away or takes some rest . . . . . . . . . . . . . A visiting nurse a registered nurse paid to provide nursing care to the patient at home . . . . . . . . . . . Adult day carea group program that provides out-of-the-home activity and supervision during the day . . . . . . . . Domiciliary or boarding carea living arrangement that provides residential care but not nursing care either in another familys home or in a group home . . . . . . . . . . . 64 50 47 48 46 45 43 43 36 36 21 19 26 20 23 27 26 22 25 23 22 15 7 12 15 13 13 14 17 16 19 19 24 3 3 5 7 6 5 8 7 19 12 26 7 9 12 9 8 10 11 9 9 11 14 NOTE Percentages rounded to nearest whole number. SOURCE: Office of Technology Assessment, 1987.

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150 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias family members themselves. Nor is there adequate information on how easily people return to normal social activities, employment, and good health at the end of their work as caregivers. Are the Burdens Caused by Dementia Unique to the Condition? In 1985, Secretary of Health and Human Services Margaret Heckler stated that: the pattern of care for persons with Alzheimers disease is not unlike the long-term care required for many other adults with multiple numbers of chronic physical and mental impairments (78). In contrast, one expert claimed that those with dementia are more likely to be institutionalized because: senile dementia is the most socially disruptive ailment of all, placing a particularly severe burden on families (8). The position of the Department of Health and Human Services (DHHS) was based on studies that showed that functional ability, how much a person can do for himor herself, is a better measure than a diagnosis for determining the amount of care the individual will need. (One person with a diagnosis of cancer may be able to dress, eat, and bathe while another person with the same diagnosis might need total care.) For several reasons, it is difficult to carry that assumption to dementia. DHHS relied on findings that applied to the costs of institutional care, not to the burdens of families, which might be quite different. And, as discussed in chapter 7, the care needs of persons with impaired thinking may be quite different from those with a physical handicap. Studies such as the Resource Utilization Group Survey based their findings on measurements made in traditional nursing homes (22), where the physical care model might be inappropriately applied to people who have dementia. Many believe that caregiving is made more dif ficult by the unique characteristics of a dementing illness that affect the relationship between the caregiver and the care receiver, impede communication, cause a lack of cooperation or apprecia tion for care, require constant supervision, and lead to bizarre behaviors. Since dementia is characterized by changes in behavior, it may be more appropriate to compare the problems of caring for a person with dementia to those of caring for a person with mental retardation, brain damage, or mental illnesses. Greater caregiver stress has been noted in those who care for persons with more personal care dependencies, more symptoms of mental impairment, and more disruptive or acting out behaviors (19,41)52,59). Of these, one study found disruptive behavior to be most stressful for families (59), Caregivers of persons with a dementing illness have been compared with those who care for equally impaired, nondemented elderly: Caring for the physically disabled versus the mentally disabled are unique situations . The mean number of hours spent providing care was remarkably similar, but the personal stress and negative feelings were significantly higher for the dementia group and caregivers of dementia victims were more likely to be considering placement (7). H OW will Changing Patterns of Family Life Affect the Availability Caregivers in the Future? Increasing Numbers of the Very Old o f The oldest age groups are among the fastest growing segments of the population. It is these groups that are most at risk of developing a dementia (12). They are also more vulnerable to multiple health problems, increasing the amount of care they may need, and reducing the likelihood that family members can provide it. The very old are more often widowed or have a spouse too frail or ill to care for a person with dementia (8). Their children are entering old age themselves. One study found that 40 percent of those admitted to a nursing home had an adult son or daughter over 60, and that half the applications for admission to a nursing home were precipitated by the death or severe illness of the spouse or adult child (8). Thus age makes this cohort both more vulner-

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Ch. 4The Family l 151 able to dementia and less likely to have caregivers available. As more people live into old age, four-generation families become more common. From the point of view of the younger potential care provider, the family tree is exceedingly top heavy (9). Over time, an individual caregiver may provide care to several dependent family members: an in-law, a parent, and a spouse. In addition, the declining birth rate reduces the ratio between potential caregivers and the elderly. other changes includ ing the increasing number of women working outside the home, rising divorce rates, mobility, and smaller familiesalso contribute to the number of persons without available caregivers. Return of Women to the Work Force The number of working women has quadrupled in the past 50 years, with women between the ages of 45 and 64 accounting for the largest increase in the labor force (80). It is women in this age group who are most likely to be called on to provide care for a parent or spouse with a dementing disease. Although women of all ages agree that care of a frail elderly relative becomes the responsibility of daughters, the majority also feel that a woman should not adjust her work schedule to care for aging parents (10). Women face conflicting demands on their timework, parents, children, an aging spousea conflict that has been called the woman in the middle (9). Often women in older cohorts give up time for rest or recreation for themselves. Some point out that there is a limit to the amount these women can do (9). Others argue that the baby boom women have entered the labor force and are raising children, with fathers assuming a more active role in child care (51), Currently working women are more willing than those of previous generations to purchase child care while they work, and they may follow the same pattern in care of their parents, with sons assuming increasing responsibility for aging parents and with families becoming more willing to purchase care for elderly family members, Single women heads of households and low-income women, however, have fewer options for sharing or purchasing care (52). Increasing Numbers of Single Persons Living Alone The number of single-person households is increasing (76). These individuals lack the most common source of caregivers should they become impaired-others members of a household. Since individuals with dementia generally need a person living in the home to provide supervision, the growing number of persons living alone is of particular concern, The OTA study found that 4 percent of persons with a dementing illness were living by themselves. That figure is probably a significant underestimate because the sample was taken from those who had taken action to join ADRDAunlikely in the case of an individual with dementia living alone. The insidious onset of Alzheimers disease is often overlooked in persons who continue to live by themselves although significantly impaired. They are at risk of accidents, robbery, and severe personal neglect, and they pose dilemmas for social agencies who are asked to assist them. High Divorce Rates and Changing Patterns of Remarriage and Cohabitation The current frequency of divorce and remarriage can be expected to have an impact on the number of caregivers available to persons with dementia. Single adults often have multiple responsibilities for children, employment, and homemaking and may have little time for the added demands of caring for the elderly. Divorced women frequently have lower incomes and are thus less able to purchase care. In fact, many such women depend on their parents, if they are healthy, to provide both financial help and child care. Remarried families have complex and varied loyalties and feelings of obligation that complicate plans for coordinated patient care. The number of unmarried couples living together is also increasing and these people may have different concepts of responsibility for in-law care (9). Increasing Mobility of Families One study found that most elderly persons have at least one child living near them, and that childs

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152 l Losing a Mllion Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias proximity has been stable for over 20 years (66). But often only one child assumes responsibility for the majority of parental care because siblings live out of town. The role of these more distant adult children in caregiving is unknown. However, it is known that caregivers who feel well supported by their families feel less burdened by care. This feeling of support maybe more important to the caregiver than even the severity of patient behaviors (85). Isolated caregivers thus maybe additionally burdened by the limited support of other family members imposed by geographic distance. Changing Attitudes About Family Responsibility Some commentators believe that the spouses of persons with dementia demonstrate exceptional HELPING A major concern for those who shape policy for persons with dementia and their families is identifying services that will assist caregivers and at the same time control government costs. Respite care has been identified as a key element in helping families and has been proposed as a means of reducing costs by enabling families to continue to care at home rather than turn to more costly nursing home care. Respite care is any formal program that cares for the person with dementia on a part-time basis so that the caregiver can rest, remain employed, seek medical care, etc. Respite programs include in-home companion care, inhome personal care, adult day care, and shortterm stays in a nursing home, hospital, or boarding home. A Duke University survey of families (26) and the OTA survey (see table 4-16) both found that families preferred care in the home to other forms of respite. The OTA study also found that families called several options for respite care urgently needed. That finding, rather than the ranking of those options, may be the most significant: A familys choice of services may change as the patients disease progresses and the familys ability to provide care changes. loyalty to the ill partner, remaining in the marriage and providing care for many years (36). Whether future cohorts of caregiving spouses will display a similar loyalty is not known. Most of the present group of elderly Americans are in first marriages of long duration at the time of the onset of the disease. In addition, this cohort entered marriage with a commitment to a lifelong relationship. Future cohorts with marriages of shorter duration or different commitments may show different patterns. FAMILIES The Family Survival Project has described the characteristics of respite it has found to be workable. This description points out that respite is intended to be temporary, is not to replace other services, and describes what works with family caregivers. Respite services work best when the family (and, if possible, the patient) works with the service provider to structure the care plan, Before a program is set up, the ages and traditional values of both the disabled person and the caregiver (and others in the home) should be considered, as should the home environment and the relationship between the patient/disabled person and the caregiver. The patients functional level and behavioral status should be assessed in conjunction with the caregivers health status and needs for relief. Any amount of respite seems to work for those who accept it as an option. Ten hours a week of home care, 1 day a week in day care centers, an occasional weekend, 2 weeks in a foster homeall achieve some degree of relief and help to postpone or avoid institutional placement and family breakdown.

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Ch. 4The Family l 153 l In cases where the patient or caregiver faces a deteriorating situation, usually because of failing health, respite must be seen as a temporary solution. It is not a substitute for the family but for a much needed community-based and coordinated long-term care program. l A S many community resources as possible should be utilized in designing and providing a respite service. What works in a respite program will depend on what supports it in the community: volunteer programs, day care centers, nursing homes, companion programs, etc. l Training of family members in physical patient care, behavioral problem management (particularly for persons with dementing illness or mental disability), financial management, and stress reduction all enhance the potential for success of respite. At the same time, self-care training for disabled persons will increase opportunities for independence. Respite is, after all, temporary and time controlled and should be offered together with other caregiving education. l All situations will not be served by respite care. Many family members do not seem to give up their care role easily, even when 24hour care exceeds 10 to 20 years. For some caregivers, the concept of respite is simply an unknown and, once the new term is explained, they seek the service readily. Others fear that one small vacation will disrupt their ability to continue as they did before. Some fear that once the patient is out of the home for even a short period, the door to permanent institutional placement will be opened. As in home health care, strangers in the home present problems to some families. Many patients are too ill or disabled (given the declining health of the caregiver) to be cared for at home, and respite will help only in a shortterm, limited way. Appropriateness of respite must be considered for each situation (58). Will Improving Supports for Caregivers Ease the Burdens on Families? Although the burden families experience is well established, and some things are known about the groups most at risk (28), the relationship between providing respite or support and reducing family burdens may not be straightforward. For example, increased respite will not alleviate the grief that adds to the caregivers experience of burden. Also, the level of either distress or burden may not correlate with family use of nursing homes. Families may choose to keep a person at home despite their burden, or because a satisfactory nursing home may not be available. There may be no relationship between burden and placement, or the relationship may be a complex one, invoking behavioral symptoms, prior relationship, the needs of the family, and access to suitable care. Two conflicting theories about family needs sometimes influence policy. The (wear and tear theory holds that families are fragile and unstable, and that unless they are assisted they will become exhausted, overburdened, unable to provide adequate care to the frail elderly, and impaired as a family unit (subject, for example, to divorce, delinquency, substance abuse, chronic illnesses of caregivers, or suicide). The adaptation theory, on the other hand, assumes that families have a great capacity for change and therefore will adjust to the demands of care, through sharing of tasks, purchase of care, personal growth, and so on. Neither theory has been proven, Either can be argued effectively on the basis of existing data. Equally significant is the fact that either can be intuitively accepted, based on ones knowledge of families. Thus they both influence public thinking about the kinds of services and government assistance families need, Although researchers disagree about the kinds of care needed and the nature of the burden experienced, no one claims that most families are not burdened, Evidence of increased substance abuse and indications of poor mental health support the position that at least some families are vulnerable to the pressures of care. The fact that the majority of caregivers continue to provide care for years and to juggle the many demands of caregiving, employment, and the needs of other family members does not entirely support the hypothesis of adaptation, for it does not reveal the damage done by concealed stress.

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154 Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias One study found that husbands who provided care complained less about the burden of care but tended to die prematurely (26). The most reasonable assumption is that both theories are correct. Some families adapt successfully to the demands of caregiving for at least part of a relatives illness, and others show symptoms of distress (26). In fact, a family may adapt successfully for part of the illness but experience problems during other periods. One study found that caregivers were more stressed in the year following nursing home placement than were those caring for a patient at home (26) but bereaved caregivers experienced increased well being. This indicates that relief from caregiving does not necessarily bring relief from the emotional burden of care. Research has identified some ways in which family burden or distress can be alleviated (32,35,64). Counseling and support groups decrease caregivers feelings of loneliness and of being misunderstood. They also help caregivers better adapt to the demands of caregiving. Families and respite care staff both report that respite from caregiving plays a vital role in reducing family stress and burden. Families are enthusiastic in their praise of respite programs and many report that a program saved my life or kept me sane. Family concern over the urgent need for respite has led ADRDA chapters to set up successful grassroots programs (see ch. 7), However these elements may not influence the family decision to place a person in a nursing home (86). A controlled, prospective study (funded by the American Association of Retired Persons and the Andrus Foundation and carried out at Duke University-George and Gwyther, principal investigators) is looking at the effects of home care on the family, the patient, and the provider. Such studies will identify the kinds of services that help families most or predict which services are most urgently needed. Will Respite Care Reduce Costly Nursing Homes at a to the Taxpayer? Families clearly need respite. The pite in reducing the use of nursing Use of Savings role of reshomes and the cost to the taxpayer of institutionalizing, however, is not so clear. In fact, when respite postpones placement, it may also result in the admission of sicker persons, resulting in a more costly case mix. There are several other reasons why provision of respite may not influence cost of institutionalization to the taxpayer. Patients without caregiving families will continue to need institutional care, Persons with serious multiple illness including cognitive impairmentwill need more care than respite can provide. Families may choose to keep ill persons at home despite the burden caused. Nursing homes may not be available to some persons. Studies that report that respite postpones placement may not have measured what families would actually do in the absence of respite. Families now receiving few services may be more willing to use respite than nursing home care. Half the residents of nursing homes have no family, and those who do have fewer caregivers, or have caregivers who are ill or have sensory impairments (12). The death or serious illness of a caregiver clearly predicts placement (45). Thus more than half the residents of nursing homes have no one to care for them at home. Savings to taxpayers from enabling a family to keep a patient at home longer cannot be calculated on the basis of institutional costs, but only on that fraction of the institutional costs expended on patients with available families. Since the sizes of the oldest cohorts are growing rapidly and since these people are the most vulnerable both to developing a dementia and to loss of caregivers, the need for institutional care for patients without families can be expected to grow. Many people in nursing homes have multiple illnesses, including dementia or delirium, and need more care than respite can give. The severity of illness, not the presence of dementia or the familys need for respite is the cause of nursing home placement. In addition, families who do not have close bonds to the person with dementia or who are poorly

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Ch. 4The Family l 155 equipped to provide care can be expected to turn to nursing homes. This group includes families in which the caregiver is not a close relative, the caregiver is seriously or chronically ill, there is a long history of family discord, the caregiver is psychiatrically or intellectually impaired, or the patients needs are not met because the family is so disorganized. There may be no financial incentive that will make ill-equipped or unavailable kin provide care (5 I). Conversely, are there incentives that would encourage more families to keep patients at home longer? One study found that 42 percent of patients who had caregivers lived with that caregiver until the patient died (26). The OTA study found that 74 percent of families felt that a person with a severe dementia should be in a nursing home, but only 45 percent had placed a family member and 48 percent felt that nursing homes did not provide high-quality care. Thus many families never use placement. Some families chose to keep patients at home, despite the burden; or place loved ones too late rather than too early, Dedication to the ill person and barriers to nursing home use combine to keep people at home. Testimony from the Maryland Governors Task Force on Alzheimers Disease and handwritten comments attached to the OTA survey questionnaires included many reports of a frail or exhausted caregiver continuing to care at home for a person who needed skilled nursing care. Respondents indicated that the cost of the nursing home would impoverish both the caregiver and the ill person. As stated, 48 percent of the respondents to the OTA survey felt that nursing homes provided unacceptably poor quality care. Families also resist nursing home care because they have much less control of their relatives quality of life or type of care after placement, especially when Medicaid funds are used (33). Caregiver attitudes about the quality of care nursing homes provide has been found to be at least as important to placement as the ill persons physical and emotional health (20). Nursing homes may not be available to some people. The General Accounting Office found that persons with dementia are less likely than other individuals to be admitted to nursing homes and, if admitted, less likely to receive quality care (72). Cost saving ceilings on nursing home beds, imposed b-y some States, create a situation in which nursing home bed use is artificially low. Difficult dementia patients are less likely to be admitted than other patients. While certain incentives such as tax credits might help a subgroup of affluent families, the commitment families show to continue providing care despite the stress it causes indicates that further incentives would have a limited impact on caregiving. In addition, there may be negative implications to incentives: Is it desirable to encourage an employed head of household to give up a job to provide more hours of care? Should incentives encourage a frail wife to continue to care for a violent husband? Should incentives encourage a caregiver who is abusing tranquilizers to continue providing care? How can a caregiving wife care for an ill husband much larger than she is? If the caregiver becomes ill from caregiving, both persons may need institutionalizationat a greater cost Discouraging nursing home use further may compromise patient care and family survival. Since families are already providing almost all care, the effect of further incentives may be limited by families ability to do more. Virtually the only resources available to families are nursing homes and family support groups. Furthermore, there may be many families needing extensive care that are not now using nursing homes due to bed shortages, cost, poor quality care, etc. These families may be more willing to use respite resources than existing nursing home services, especially if a plan for shared payment allows the family to remain partially in control of care and if such services are readily accessible, are individualized, and provide better care than families believe is available in nursing homes. Will Providing Supports for Caregivers Cause Them To Do Less for the Recipient? There has long been a debate over whether formal supports tend to supplant informal support (friends, family, or neighbors). Much of the evi63-218 0 87 6 QL : 3

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156 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias dence, however, indicates that both formal and informal care, working together, would best serve persons with dementia. For example, the object of respite care is to provide care for some of the hours a family would otherwise cover. Replacement of family care is intended in this case, and should be expected. In other cases, caps on respite reimbursement stretch programs limited resources. Such caps also control runaway costs. The Family Survival Project, which offers respite care, reports that 59 percent of families in the respite program supplemented cost out of pocket in 1984-85 (57). Counseling and family support groups offer caregivers improved caregiving skills, reassurance, and other assistance, supplementing informal services rather than supplanting them. The current behavior of families supports the belief that they will continue to care for family members. Despite the fact that Medicaid encourages institutionalization over home care for some people, families have resisted use of nursing homes until they can no longer manage. Indeed, a common complaint in nursing homes is that some caregivers continue to spend many hours a week with patients and are not reestablishing their other social relationships. Studies have shown that families do not decrease the care they provide when alternative services are available. Many of the services families provide are individualized and are offered at all hours and on weekends (23). The family contribution includes emergency assistance for short periods (28). In addition, important components of the family contribution include love, financial advice, and someone to talk tothings no formal support service is likely to supply. And given the magnitude of the need for supportive care resources, it is unlikely that a program large enough to supplant the family could be established. Some caregivers provide all care and refuse offers of assistance such as day care even when clearly overburdened. The thrust of public policy will be most effective if it aims to supplement, not supplant, family care. Factors Leading a Family To Seek Nursing Home Placement Research has sought to identify the factors that lead to placing someone in a nursing home. If researchers could identify a specific behavior that is likely to trigger placement, better treatment of that symptom might result in fewer placements. Unfortunately no such factor has been identified. Incontinence, violence, extreme mood swings, and night wandering are suspected as precipitant of placement, but the data neither confirm nor refute this belief. Severity of physical disability as well as severity of mental impairment both add to caregiver stress (19,41,53,59) and perhaps to the decision to place a person in the nursing home. Rather than seeing specific problems (such as incontinence) as overwhelming, the experience of families is variable, with many factors, not just behavior, causing burden (86). The characteristics of caregivers influence placement decisions at least as much as the characteristics of the person with dementia. A prospective study identified caregivers who are more likely to turn to nursing home care. They are often younger women, and more often the adult child of the ill person than the spouse. They report high levels of stress, used more psychotropic drugs in the year before placement, and had higher incomes (16). Caregivers who are isolated or have sensory impairments may also be more likely to use placement (33). Studies That Examine the Relationship of Respite and Placement Some studies have looked at patients already in nursing homes and asked questions about why they were admitted. For example, the New York State Respite Demonstration Project found that families receiving services were less inclined than before to place patients in nursing homes (48); another study reported that families found daycare postpones placement (55). These studies are subject to bias; the weakness of retrospective research is that there maybe a difference between what families think they would have done, and what they actually have done. Several studies funded by the Health Care Financing Administration (HCFA) under so-called 2176 waivers have matched families receiving care with a control group who did not receive respite care (see ch. 11 for a discussion of 2176 waivers). These studies looked at the frail elderly in general, not just those with dementia. But to ensure

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Ch. 4The Fami/y 157 that the intervention was directed at persons who really were at risk of placement, the studies required that all persons in the experimental and control groups be eligible for Medicares skilled nursing care (a medically oriented definition that excludes the kind of care needed by people in the middle stages of dementia). These studies did not find significant differences in placement rates between those using and not using respite care. One possible explanation is that the skilled care requirements meant that interventions were offered too late (i.e., when the patient already needed more care than the family could provide) and that if family stress is to be reduced, or placement postponed, the intervention must be made earlier. Also, selection for those requiring skilled care would exclude most people with dementia unless they also have other serious illnesses or are in the late phases of their dementia. A study at Duke University found that families who used formal community services were more likely to turn to placement within a year (26). This finding supports the hypothesis that families who actually need nursing home care turn to respite when they are desperate, but are reluctant to think about nursing home care, The involvement of a professional may reassure families of their need for more help with care. Respite may be a temporary bridgethe Family Survival Project originally named its program Bridges to Survivalbetween total family care and institutionalization. Such abridge may be necessary for families and it needs to be provided before it is too late to help (33). It may be inappropriate to consider respite as a solution to the high public costs of nursing homes. Policies that place cost saving as the primary goal of respite care may be likely to fail. The OTA survey asked families who had used respite care why they had stopped using it (see ch. 7). The most common reason was that the person had entered a nursing home. The other major reasons are that the service is too expensive, the patient died or became worse, or the caregivers found they did not need the service. These findings support the hypothesis that nursing home care is a needed part of the continuum of care for many families, and that after a certain point other services do not prevent its use. (These data do not tell whether respite postponed nursing home placement.) The finding that many families in the survey did not feel the need for respite services does not indicate that these resources are not needed in general. Respite care is probably most needed in the middle phases of a dementing illness, Many respondents were caring for people who were too ill to use programs such as day care or who were too early in the course of their illness to need constant supervision. That finding may also explain the number of families who avoid using formal services. Provision of family support may postpone placement, though studies have not yet confirmed that hypothesis. Recent studies do point to interventions that should be tested: providing additional emotional support to caregivers, using information to reduce difficulties in providing care, case management, assistance, equipment, or respite (16,20,50). Interventions to reduce disruptive and socially inappropriate behavior and to enable management of incontinence are also needed. In summary, the reasons behind placement may lie with the characteristics of the family and its support system: When physicians assess a patients need for nursing home care, it is not enough to evaluate symptoms or to know how long the patient has been ill or functioning at the current level. The structure and characteristics of the caregiver support system are also importantand, in fact, are better predictors of institutional placement than patient characteristics (20). The combined stress of multiple role demands, problems in caring for the patient, the caregivers perception of burden, the absence of support or help, the lack of information about how to care for the patient, and high cost, poor quality, and limited capacity may all be factors in nursing home placement. The final straw may be less significant than the years of attrition that have finally exhausted the caregiver (12).

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158 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias ISSUES AND OPTIONS ISSUE 1: Should the Government Encourage Families To Assume Additional Responsibility for Their Relatives Who Have a Dementing Illness? Option 1. Make no change in the current division of responsibility for persons with dementia between government and families. Option 2. Encourage greater family responsibility for persons with dementia. Option 3. Assume a greater share of the task of caring for persons with dementia. Examples of the government shouldering more of the burden (option 3) include tax breaks to caregivers, allowing services on the basis of caregiver need as well as patient need, reimbursing respite programs, and correcting inequities in Medicaid laws. Examples of encouraging increased family responsibility (option 2) include holding sons and daughters responsible for parent care in a nursing home, encouraging purchase of insurance coverage, reverse mortgage plans, etc. The complex issue of the responsibility of government and families is discussed in chapter 12. This chapter has pointed out some of the issues raised about families. 1. 2. 3. 4. 5. 6. Families already provide the majority of care. Families provide kinds of care that formal services cannot or do not provide, Current policies create inequities in the financial burden imposed on families; for example, spouses, particularly women, are more likely to be impoverished by care than other family members. Efforts to control government expenditures can result in inequitable access to services; persons who are dependent on Medicaid, have a dementia, and who have behavior problems are less likely to be admitted to nursing homes. Current funding policy encourages use of nursing homes but does not support use of other services. Respite care cannot be assumed to be a substitute for nursing home care, but is needed by families to assist them in the burdens of care and to reduce caregiver exhaustion and burnout. 7. Families prefer to share the costs and bur8. 9. dens of care. The present system, however, requires families to impoverish themselves and to give up control and involvement in patient care in order to receive help with the cost of institutionalization. Current funding is based on medical need for care. This approach excludes many patients and their families from appropriate assistance until late in their illness. Families contribute about half the costs of nursing home care and most of the costs of respite care, as well as large amounts of inkind services and room and board. Efforts to obtain further contributions from families may be difficult and costly to enforce. Such steps could harm some caregivers and families (by leading to increased drug use, poor health, inattention to children, loss of employment) or push families to neglect the person with dementia. If government assumes a greater role in caring for persons with dementia (option 3), it will probably cost more than the current government share of care (see ch. 12 for a more complete discussion). ISSUE 2: Should the Government Include the Caregiver in the Definition of the Care Recipient? Option 1. Continue to consider eligibility for services based only on the needs of the patient. Option 2. Modify existing programs to provide services that are more social and less narrowly medical in defining eligibility. Option 3. Modify existing programs so that individuals with dementia are eligible for services geared to the caregiver. Option 4. Develop new programs that provide both care for the patient and care aimed at giving respite to the caregiver. Current criteria for eligibility for most services is based on the needs of the ill person. However,

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Ch. 4The Family 159 it is clear that caregivers of persons with dementia also need services to enable them to continue to provide care and to reduce the negative effects of burden. Option 1, maintaining current criteria for eligibility for services, will help to contain costs, but places severe and in some cases harmful burdens on families and includes inequities of access. Providing services to other than ill persons (option 4) would require a major shift from current policy. It would also create difficult issues in determining which caregivers should be eligible for service. A compromise would be to broaden patient eligibility for social or psychosocial services (option 2). These are the kinds of services most often needed by persons with dementia and their families and include case management (or case coordination, or information and referral), adult day care, in-home respite care, and short -term respite care. Support for this approach comes from preliminary findings that both the individual and the caregiver benefit from psychosocial interventions (see ch. 7.) option 3, modifying existing program so that individuals with dementia are eligible for services geared to the caregiver, would limit additional costs to those people who are now eligible for services. However, this option would exclude services to those families in which it is the caregivers need for help, rather than the patients need for service, that precipitates placement or caregiver morbidity. Since access to services is already limited for persons not needing skilled nursing care, this plan would restrict help for the caregiver except when the patient is severely ill. Many providers believe that if interventions are to be effective, they must be provided early enough to avoid caregiver burnout. While option 4 would require a shift of policy, it has the major advantage of being flexible enough to allow the system to respond either to the needs of the patient or of the caregiver. Options 2, 3, and 4 would probably increase costs. In most instances, they will not replace existing services, which are generally limited to the patients need for skilled nursing care. In addition, an unknown number of persons in the community who are not now using funded services will use respite or home care services, The ex tent to which interventions aimed at the caregiver will postpone or prevent placement is not known. It is almost certain that additional services will reduce caregiver burden, may reduce caregiver morbidity, and may enable caregivers to remain productively employed. ISSUE 3: Should the Government Assist in Coordination or Selection of Services Option 1. Leave case management a State, local, or informal system. Option 2. Link case coordination or case management to services it provides or funds. Option 3. In place of case management or case coordination, require that programs using Federal funds establish and use efficient coordination with other existing programs. Information about available service is a primary need for caregivers. The OTA survey found that many families need help finding services and negotiating the system to obtain needed services. Families also need information on a variety of topics: how and where to get help, what the implications of a diagnosis of dementia are, what the genetic risks are, what costs and burdens they will face and should plan for (39,43). Families and service providers report that existing services are fragmented and that families and patients cannot move easily from one to another. Case management has been proposed as one method of assisting families. One accepted definition of case management describes functions in terms of long-term care: The principal functions of case management in long-term care are the following: 1) screening and determining eligibility; 2) assessing the need for services and related needs; 3) care planning (developing a care plan); 4) requisitioning services; 5) implementing the service plan, coordinating service delivery and following up; and 6) reassessing, monitoring, and evaluating services periodically (6). The lack of available information, services, and limited and uneven case management resources have been well documented. The existing services are not well coordinated in many areas. Those providing services frequently do not know about

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160 Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias or refer families to complementary resources. And there are major gaps in the range of services available. The need for better referral to services and coordination of services is clear; the solution is less clear. Case management is rarely mentioned as a crit ical part of any respite program although many programs offer some form of case management despite the absence of funding for it. Many argue that case management is essential to efficient service delivery (33). OTA previously reviewed the effectiveness of cases management systems such as ACCESS, TRIAGE, and channeling (73). The effect of such programs on persons with dementia or their families is not known. However, families rarely seek and use as many services on their own as case managers would prescribe. There may be great variations in the amount of case management a family will need. Some families may be so overwhelmed by the demands of care that they cannot seek help for themselves, even when given the necessary information. Individuals with dementia who have no family member to coordinate services are especially disadvantaged. Service providers often do not help such people obtain appropriate care, Other families may be capable of coordinating care if supplied with information, and many would prefer to do so rather than use the services of a stranger. Case management can have several objectives, and they will affect its success. Case management helps persons with dementia and their families use available services. It may enable them to make financial plans for future care needs. It may also permit more efficient use of services. Case management may ensure that individuals are not placed prematurely. It can be used to guarantee that the least restrictive environment be available to those who have no family members to advocate for them. However, when case management is a required part of programs whose goal (or financial objective) is to prevent placement, it can cause further delays and suffering for caregivers already exhausted by care. The effectiveness of case management is limited when important services are not available. While it can efficiently use services that are available, case management does not address the related problem, lack of resources. Case management, or case coordination, can have several kinds of beneficial indirect effects. Formal providers who are reluctant to accept a person with dementia are more likely to do so when they are assured that others are continuing to assist the patient and family. Case managers sometimes informally train providers in care in order to gain admission for a person with dementia. Thus case managers increase the community response. Families are often reluctant to use respite resources, even when their own health or the patients well being is in jeapordy. Case managers report that an important part of their role is to gain the trust of caregivers and thus enable them to accept services. Case managers can work with a family to reduce conflict and enable family members to better support the caregiver. When little family support is available, the case manager may serve as a substitute, providing necessary encouragement and sympathy to the caregiver. Because management has strengths and weaknesses, it will be needed by some families and not by others. Families clearly wish to remain in control of the patient care. Case management must be designed to assist when families are too overwhelmed to seek proper care for themselves or the patient but it must not usurp the familys role. The existing system (option 1) does not provide needed information about services or ensure that additional case management services are available to those who need them. Option 2, including case coordination or case management in Federal programs, may improve access to services. It would also increase Federal costs, due to both the added service and the tendency of case management to increase the total number of services used. Further, case management must be designed so that it does not usurp family responsibility or create new problems. An effective and efficient method of delivering case management services must be identified. Whether case management or case coordination is provided or not, more coordinated access to appropriate resources could be achieved by re-

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Ch. 4The Family l 161 quiring that programs using government funds establish effective liaisons with other nearby programs so that they all routinely inform caregivers of other services that might help them (option 3). Federal agency policies could be reviewed for their impact on issues related to overlapping and conflicting responsibilities. Federal funds could be directed toward communities that have established interagency cooperation and have resolved issues of duplication of services. ISSUE 4: Should the Government Provide Respite Services? Option 1. Leave provision or purchase of respite care to the States, the private sector, and to families. Option Z Fund a limited number of model respite programs. Option 3. Provide some or all respite care through direct provision of services, by paying for services, or by such things as tax credits. Families urgently need low cost, readily available noninstitutional services. These services must not take control away from the family; they must be flexible and varied enough to meet the needs of different families and patients. They should be convenient and offer families options. Passage from one service to another must be smooth, and gaps in service must be eliminated. For at least some families, the caregivers physical and mental well-being may depend on respite programs. However, not all families use respite when it is available. There appear to be many reasons for this, including the quality and cost of the service, and caregivers reluctance to turn over even part of care. Families are concerned that their resources will be depleted and seek to postpone purchase of any care, even at reasonable cost, in order to conserve funds. If a continuum of services at known costs were available, families could project their long-term expenses and budget accordingly. Providing such programs is unlikely to save money, however, either through preventing placement or sustaining the caregiver. And such a program would be costly. Meeting the need for noninstitutional care for large numbers of persons with dementia is probably beyond the capabilities of at least some States (option 1), and programs such as block grants have repeatedly been shown to underserve this population. Many families are unable to purchase the services they need. However, there is insufficient information about what kinds of services are needed, what services families will use, how much they can afford to pay for services, what care techniques are beneficial to patients and families, and what other barriers to service delivery exist for this group. This lack of information impedes planning a federally funded service package, although a few centers could provide information for later national implementation. Some models do exist: the Family Survival Project has been a notably successful program, and California has initiated studies that will generate answers to some of these questions. If the Federal Government were to support research into care delivery for persons with dementia (option 2), costs of open-ended programs would be avoided, data would be gathered to answer vital questions about services, and some families would benefit directly from the use of pilot programs. ISSUE 5: Should the Government Make Access to Reimbursable Resources Easier; More Equitable, or Available Sooner? Option 1. Leave access to Federal programs as is. Option 2. Change accessibilit y to, for example, Medicare and Medicaid. Access to Medicare and Medicaid is discussed in chapters 11 and 12. Extensive modification of these programs could make problems of access even worse for some groups or could significantly increase costs. However, relatively minor changes in these two programs could greatly assist families (option 2). The government could establish a policy requiring all services using Federal funds to make clear and complete information about eligibility and the application process readily available to the public. There is considerable anecdotal information that information given to families is erroneous, or that families have difficulty getting this information, Easy access to such information would reduce the stress families experience in getl

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162 Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias ting help, would assist those families who are given erroneous information, and would encourage families to plan ahead for major health expenditures. Medicare could expand the coverage for certain home care services to include preventive nursing care. Such visits are not now covered, For example, some clinicians report that many cases of incontinence can be reduced by medical and nursing interventions and by training the family. Nursing visits might therefore reduce incontinence, which is known to be a source of severe burden to caregivers. Severe agitation and hallucinations are also known to respond to medical interventions. Nurses trained in managing these symptoms could greatly reduce the burdens families face. Home visits by a nurse maybe preferable to physician office visits because assessment of the patient in the home allows an appraisal of the environmental factors that trigger behavior (see ch. 7). These are but two examples of many possible. Further discussion of specific options is found in chapter 12. Further information about the care needs of people with dementia (ch. 7) and about respite programs will provide needed data for modifying these programs. ISSUE 6: Should the Government Provide Family Support Groups or Information Centers for Caregivers? Option 1. Provide information and support directly to families. Option 2. Support the private sector in provision of these services. It is clear that support groups and information are critical for families. The voluntary sector (primarily ADRDA) has been effective in establishing support groups and in disseminating information. However, their efforts have reached primarily the white middle classes. It maybe most efficient for government to encourage the endeavors of the private sector (option 2) and focus government skill on research to identify how to reach the hardto-reach socioeconomic groups. Information dissemination efforts should include the considerable resources of the Federal agencies with relevant expertise, such as the National Institute on Aging, National Institute on Mental Health, Health Care Financing Administration, Administration on Aging, National Center for Health Services Research, and others. A Federal mechanism for centrally collecting relevant information would facilitate both government and private efforts. In addition, families continue to have difficulty obtaining support and information from the professionals to whom they turn, The governments role in educating these professionals is discussed in chapter 9. CHAPTER 4 REFERENCES 1. Alzheimers Disease and Related Disorders Association, A National Program To Conquer Alzheimers Disease, Chicago, IL, 1986. 2. Alzheimers Disease and Related Disorders Association, Central Maryland Chapter, personal communication, November 1984. 3. A1zheimers Disease and Related Disorders Association, Greater Philadelphia Chapter, personal communications, November 1984. 4. American Health Care Association, Trends and Strategies in Long-Term Care, Washington, DC, 1985, 5. American Medical News, Senior Citizen Agencies Dont Help Enough, Mar. 21, 1986. 6. Austin, C. D., Case Management in Long-Term Care: Options and Opportunities, Health and Social Work, p. 16, 1983. 7, Birkel, R. C., Sources of Caregiver Strain in LongTerm Home-Care, contract report prepared for the National Center for Health Services Research, U.S. Department of Health and Human Services, unpublished. 8. Brody, E. M., The Formal Support Network: Congregate Treatment Settings for Residents With Senescent Brain Dysfunction, N.E. Miller and G.D. Cohen (eds. ) Clinical Aspects of Alzheimers Disease and Senile Dementia, Agng, vol. 15 (New York: Raven Press, 1981). 9. Brody, E. M., Women in the Middle and Family Help to older People, The Gerontologist 21;471-480, 1981. 10. Brody, E. M., Parent Care as a Normative Stress, The Gerontolo#st 25:19-29, 1985. 11. Brody, E. M., Johnson, P. T., Fulcomer, M., et al.,

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Ch. 4The Farni/y l 16 3 Womens Changing Roles and Help to Elderly Parents: Attitudes of Three Generations of Women, Journal of Gerontology 38:597-607, 1983. 12. Brody, E. M., Lawton, M. P., and Liebowitz, B., (Senile Dementia: Public Policy and Adequate Institutional Care American Journal of Public Heahh 74;1381-1383, 1984. 13. Caplis, J., Financial Effects of Nursing Home P]acement on the Community Spouse Maryland State Office on Aging, Annapolis, MD, Aug. 1, 1980. 14. Chavkin, D., Interstate tamiability in Medicaid Eligibility and Reimbursement for Dementia Patients, contract report prepared for the Office of Technology Assessment, U.S. Congress, 1986. 15. Chavkin, D., Directing Attorney, Maryland Disability Law Center, persona] communication, Aug. 28, 1986. 16. Colerick, E., and George, L. K., Predictors of Institutionalization Among Caregivers of Alzheimers Patient s, Journal of the American Geriatrics Soci et.v 34:493-498, 1986. 17. Coons, D., A Residential Care Unit for Persons \~/ith Dementia, contract report prepared for the Office of Technology Assessment, LT.S. Congress, 1986. 18. Coons, D., Chenotveth, B., Hollenshead, C., et al., Final Report of Project on Alzheimers Disease: Subjective Experiences of Families (Ann Arbor, MI: Institute of Gerontology, University of Michigan, 1983). 19. Deimling, G. T., and Bass, D. M., SJrmptoms of Mental Impairment Among Aged and Their Effects on Fami/~~ Caregi\rers (Cle\eland, OH: Benjamin Rose Institute, in press), 20. Deim]ing, G, T., and Poulshock, S.M., The Transition From Family In-Home Care to Institutional Care, Research on Aging 7:563-.576, 1985. 21. Fanning, J., President, National Association of Disability Examiners, personal communication, Oct. 12, 1983. 22. Foley, \V.J., (Dementia Among Nursing Home Patients: Defining the Condition, Characteristics of the Demented, and Dementia on the RUG-II Classification System, contract report prepared for the Office of Technology Assessment, U.S. Congress, 1986. 23. Frankfather, D., Smith, M., and Care, F., Fami@ Care of the Elder!v (Toronto: Lexington Books, 1981). 24. I+iss, L,, and Enright, R., Emp]o}~ed Caregivers of Brain Impaired Adults, Family Sur\ri\ral Project, San Francisco, CA, unpublished. 25. George, L, K., The Burden of Caregiving, Center Reports on Ad\)ances in Research 8(2): 1-7, 1984. 26. George, L. K., The Dynamics of Caregiver Burden, Report Submitted to the American Association of Retired Persons, Andrus Foundation, 1984. 27. George, L. K., The Dynamics of Caregiver Burden: Changes in Caregiver Well-Being Over Time, paper presented at the Gerontological Society of America, November 1984. 28. George, L. K., and Gwyther, L. P., ( Caregiver WellBeing: A Multidimensional Examination of Family Caregivers of Demented Adults, The Gerontologist 26:253-259, 1986. 29. Glaze, R., Testimony, Joint Hearing Before the Subcommittee on Aging, Senate Committee on Labor and Human Resources, and the Subcommittee on Labor, Health, Education, and Welfare, July 1980 (Washington, DC: U.S. Government Printing Office, 1980). 30. Governors Task Force on Alzheimers Disease and Related Disorders, The Maryland Report on A)zheimerh Disease and Related Disorders, Annapolis, MD, 1985. 31. Gwyther, L. P., and Blazer, D, G., ( Family Therapy and the Dementia Patient Fami!v PhJ~sician 29:149156, 1984. 3z. Gwvther, L. P., Caring for Caregivers: A Statewide Family Support Program Mobilizes Mutual Help, Center Reports in Adiances in Research 16(4):1-8, 1982. 33. Gwyther, L. P., Director, Family Support Program, Center for the Study of Aging and Human Development, Duke University, personal communication, March 1986. 34. Gwuyther, L. P., and George, L. K,, Symposium: Caregii~ers for Dementia Patients: Complex Determinants of Well Being and Burden: Introduction The Gerontologist 26:245-247, 1986. 35. Harel, Z., and Townsend, A., (Health ~ulnerability, Service INeeded and Ser\~ice Use Among the Aged, paper presented at Gerontological Society of America, November 1985. 36. Heckler, M,, Secretary of Health and Human Services, presentation to Alzheimers Disease and Related Diseases Association, Chicago, IL, Sept. 29, 1984. 37. Henderson, J. N., (Mental Disorders Among the Elderly: Dementia and Its Sociocultura] Correlates, Modern Pioneers: An Interdisciplinary 1ie}~ of the Aged, P. Silverman (cd. ) (Bloomington, IN: Indiana University Press, in press). 38. Institute of Medicine, Improving the Qualityof Care in NursingHomes (Washington, DC: National Academy Press, 1986). 39. Kahan, J., Kemp, B., Staples, F. R., et al., Decreasing the Burden, Families Caring for a Relative With

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164 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias 40 41. a Dementing Illness, Journal of the American Geriatrics Societoy 23:664-669, 1985. Lezak, M. D., Li\ing With the Characterologically Altered Brain Injured Patient, Journal of Clinical Ps.vchiatry 39:592-598, 1978. Livingston, M., Families Who Care, British Medical Journal 29:919-920, 1985. 42. Lockery, S. A., Impact of Dementia Within Minor43 44. 45. 46. 47. 48. 49. 50. 51. ity Groups, contract report prepared for the Office of Technology Assessment, U.S. Congress, 1986. Mace, N. L., Self-Help for the Family, A]zheimers Disease and ReJated Disorders, W.E. Kelly (cd.) (Springfield, IL: Charles Thomas, 1984). Mace, N. L., and Rabins, P. V., The 36 Hour DaMv: A Fami[v Guide to Caring for Persons With Alzheimers Disease, Related Dementing Illnesses, and Memory Loss in Later Life (Baltimore, MD: The Johns Hopkins University Press, 1981). Mace, N. L., and Rabins, P. V., (Areas of Stress on Families of Dementia Patients: A Two Year Followup, paper presented at the Gerontological Society of America, Boston, MA, Nov. 21, 1982. Mace, N .L., and Rabins, P.L., A Survey of Day Care for the Demented Adult in the United States, National Council on Aging, Washington, DC, 1984. Mortimer, J. A., and Hutton, J.T., Epidemiology and Etiolo&V of Alzheimers Disease, J.T. Hutton and A.D. Kenny (eds.) Senile Dementia of the A)zheimerk Type (New York: A,R. Liss 1985). New York State Department of Social Services, Respite Demonstration Project, report to the Governor and members of legislature, Albany, NY, 1985. Freudenheim, M., Business and Health: Help in Caring for the Elderly, New York Times, Jan. 6, 1986, p. 2. Noelker, L. S., Incontinence in Elderly Cared for by Family, paper presented at the Gerontological Society of America, San Francisco, CA, Nov. 21, 1983. Noelker, L. S., FamilV Care of Elder Relatives: The Impact of Policy and Programs, paper presented at Conference on Families, InterAge; Minneapolis, MN, September 1984. 52. Noelker, L. S,, and Wallace, R. W., The Organization of Family Care for Impaired Elderly, Journal of Fami@ Issues 6(1):23-44, 1985. 53. Noelker, L. S., Townsend, A. L., and Deiml~ng, G. T., 54 Caring for Elders and the Mental Health of Familuv Members (Cleveland, OH: Benjamin Rose Institute, 1984). Ory, M. G., Williams, T. F., Emr, M., et a]., Families, Informal Supports and Alzheimers Disease: Current Research and Future Agendas) working doc 55. 56. 57 58 59 60 61. 62. 63. 64, ument by the Work Group of Families, Informal Supports, and Alzheimers Disease, Department of Health and Human Services Task Force on Alzheimers Disease, 1984. Pannella, J. J., Lilliston, B. A., Brush, D., et al., Day Care for Dementia Patients: An Analysis of a Four Year Program, Journal of the American Geriatrics Society 32:883-886, 1984. Petty, D., Executive Director, Family Survival Project, San Francisco, CA, personal communication, 1986. Petty, D., The Family Survival Project, contract report prepared for the Office of Technology Assessment, U.S. Congress, 1986. Petty, D., Respite Care: A Growing National Alternative, The Coordinator 34-36, October 1984. Poulshock, S .W., The Effects on Families of Caring for Impaired Elderluv in Residence (Cleveland, OH: Benjamin Rose Institute, 1982). Poulshock, S. W., and Deimling, G. T., Families Caring for Elders in Residence: Issues in the Measurement of Burden, Journal of Gerontology 39:230239, 1984. Pratt, C. C., Schmall, V. L., Wright, S., et al., Burden and Coping Strategies of Caregivers to Alzhei mers Disease Patients, Fami@ Relations 34:27-33, 1985. Rabins, P. V., Mace, N. L., and Lucas, M. J., The Impact of Dementia on the Family, Journal of the American Medical Association 848:333-335, 1982. Schorr, A., Thy Father and Thy Mother: A Second Look at Filial Responsibility and Family Policy, U.S. Department of Health and Human Services, DHHS Pub. No.13-11953, Washington, DC, 1980, Scott, J. P,, Robert, R. A., Hutton, J. T., et al., Families of Alzheimers Victims, Journal of the American Geriatrics Society 34:348-354, 1986. 65. Shanas, E., The Family as a Social Support System in Old Age, The Gerontologist 19:169-183, 1979. 66. Shanas, E., Social Myth as Hypothesis: The Case of the Family Relations of Old People, The Gerontologist 19:3-9, 1979. 67. Siegle, K., untitled article, The Caregiver (News68, 69, letter of the Duke Family Support Network) 4(3):2, 1984. Sluss-Radbaugh, T., Families, Informal Supports and Alzheimers Disease, position paper submitted to National Institute on Aging, National Institutes of Health, U.S. Department of Health and Human Services, Bethesda, MD, September 1983. Stone, R., Caffarata, G., and Sangl, J., Caregivers of the Frail Elderly: A National Profile, U.S. Department of Health and Human Services, National Center for Health Services Research, 1986.

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Ch. 4The Fami/y 165 70. Testimony of Family Caregi\~ers at the National Conference for Families, I-l .S. Department of Health and Human Ser\ices, National Institutes of Health; and Alzheimers Disease and Related Disorders Association, May 2, 1985. 71. To\vnsend, A., and Poulshock, S .il., Care&\ring and Decisionmaking ,\Tet\vorks of Zmpaired Elder s (Cleveland, OH: Benjamin Rose Institute, 1983). 72. U.S. Congress, Genera] Accounting Office, hledicaid and Nursing Home Care: Cost Increases and the Need for Services are Creating Problems for the States and the Elderly, \Vashington, DC, Oct. 21, 1983. 73. U.S. Congress, Office of Technology Assessment, Technolog} and Aging in America, OTA-BA-264 (ltashington, DC: U.S. Gotrernment Printing Office, June 1985). 74. LJ .S. Congress, Select Committee on Aging, Caring for America Alzheimers \ictims, hearing, kla}~ 21, 1985 (11ashington, DC: U.S. Gotrernment Printing Office, 1985). 75. U.S. Congress, Special Committee on Aging, Endless Night, Endless Nlorning, hearing, Sept. 12, 1983 (Lfashington, DC: 1 .S. Go\rernment Printing Office, 1983). 76. U.S. Department of Commerce, Bureau of Census, Household and Family Characteristics, Series T20, Jtashington, DC, Nlarch 1984. 77. Ll .S. Department of Health and Human Ser\fices, ( Alzheimers Disease, Report of the Secretarys Task Force on Alzheimers Disease DHHS 84-1323, 1$ashington, DC, September 1984. 78. U.S. Department of Health and Human Ser\rices, ( Alzheimers Disease, A Report to Congress, February 198,5. 79. U.S. Department of Health and Human Ser\~ices, Public Health Ser\ice, National Center for Health Statistics, (hloney, Income, and Po\erty Status of Families and Persons in the United States, Adtanced data, P-6(I series, hlarch 198A, fIoIll \ita] and Health Statistics, National Center for Health Statistics. 80, U.S. Department of Labor, Bureau of Labor Statistics, U.S. Working tiomen: A Data Book (llashington, DC: U.S. Go\rernment Printing Office, 1977). 81. Ifrilder, D. E., Teresi, J. A., and Bennett, R., Family Burden and Dementia The Dementias, R. Mayeux and 14 ,G. Rosen (eds. ) (INe\t }ork: Ra\en Press, 1983). 82. }ankelo~ich, Skelly, &, \$hite, Inc., Caregi~ers of Patients t$ith Dementia, contract report prepared for the Office of Technology Assessment, 11 .S. Congress, 1986. 83. Zarit, J.hl., Family Role, Social Supports and Their Relation to Caregiirers Burden, paper presented at ltrestern Psychological Association, Sacramento, CA, 1982. 84. Zarit, J. M., Gatz, N1., and Zarit S., Famil}~ Rehitionships and Burden in Long-Term Care, paper presented at Gerontological Societv of America, IVokrember 1981. 85. Zarit, S, H., Ree\rer, K., and Bach-Peterson, J., Relatives of the Impaired Elderl~7, Correlates of Feelings of Burden, The Gerontologist 20:649-654, 1980, 86. Zarit, S. H,, Todd, P. A., and Zarit, J.hl., Subjecti\re Burden of Husbands and Ifi\es as (;aregiters: ,4 Longitudinal Study, The Geron?ologi,st 26:3, 260266, 1986.

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Chapter 5 Making Decisions for Those With Dementia

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CONTENTS Page Determining Competence ., . . . . . . ..................170 Background and Precedents . . . . . . ................170 Defining Competence . . . . . . . . . ...........171 Consequences of Incompetence . . . . . . . . .......172 Forums of Competence Adjudication . . . . . . . .. ...172 Surrogate Decisionmaking + . . . . . . . . . . .,, ..173 Advance Selection . . . . . . . . . . . .......173 Informal, or Self-Selection . . . . . . ...................177 Selection by Formal Appointment. . . . . . ................178 Alternative Forms of Surrogate Decisionmaking . . . . . ....180 The Influence of Setting. . . . . . . . . . . ...182 Decisions Made by a Surrogate . . . . . . . . . . .183 Criteria forsaking Decisions . . . . . . . . . . .183 Why Surrogate Decisions Are Not Always Respected. ....................184 Questions of Liability in Medical Decisionmaking ........................185 Questions of Abuse of Surrogate Decisionmaking Powers . . . .. ....186 Individuals as Research Subjects . . . . . . . . . ...186 Issues and options . . . . . . . . . . .........188 Issue 1: Should a Standard Method of Determining Competence To Make Health Care Decisions Readopted?. . . . . . . .. ..,188 Issue 2: Should a Uniform Definition of Terminal Illness Be Adopted? ......190 Issue 3: Could the Identification of Surrogate Decisionmakers Be Encouraged? . . . . . . . ....................190 Issue 4: Should the use of Advance Directives Be Stimulated? .............192 Issue 5: Should Standard Procedures for Resolving Disputes About Treatment Readopted?, . . . . . . . . .......,....193 Issue 6: Should There Be a Distinction Between Unwanted Treatment That Sustains Life and the Unwanted Cessation of Such Treatment?. .. ...193 Issue 7: Should States Include the Decision To Withhold or Withdraw Medical Treatment in Advance Directives? . . . . . . .. ...194 Issue 8: Should Special Precautions be Taken When Patients With Dementia Are Involved in Biomedical Research? . . . . . ...194 Chapter 5 References . . . . . . . . . . . ....195 Tables Table No. Page 5-1. Special Requirements for Creating a Durable Power of Attorney for Health Care . . . . . . . ....................175 5-2, Special Limitations on Living Wills . . . . . . . . ..176 5-3, Witness Requirements for Living Wills . . . . . . . .177 5-4. Family Consent Provisions . . . . . . . . . . .180 5-5. Individual State Provisions of Family Consent Laws ..................181

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Chapter 5 Making Decisions for Those With Dementia Carolyn, 63, is in her second year in a nursing home. She has Alzheimers disease and is no longer cognizant of her family or her surroundings. She is still remembered and loved by family members, who visit her regularly to check on her care and to assure themselves that she is nursed properly and made comfortable. The family is aware of the progression of the disease and has requested that the nursing home withhold life-sustaining measures when the time for such action arrives. When Carolyn contracts pneumonia and it becomes serious, the nursing home is faced with the decision to withhold treatment and balks. The nursing staff feels that death from pneumonia is painful and difficult; Carolyn contracted it accidently and withholding treatment does not seem either right or natural. They call the local hospital and transfer Carolyn to it; there she begins to receive the treatment the nursing home was asked to withhold. The family is then faced with a new dilemma in carrying out what they feel to be a humane decision. They must again appeal to the medical staff, this time to withdraw treatment that has been started on Carolyn. Withdrawal of treatment, they find, is more difficult to obtain, and the legal process with which they are faced is becoming increasingly more complex. The State Carolyn lives in has family consent provisions, but no clear-cut guidelines on the authority to make termination of treatment requests. Robert is in the early stages of Alzheimers disease. Even though he experiences fewer and fewer moments of lucidity, he knows what illness he has and what will eventually happen to his mind and his body. He talks about it with his wife and children, expressing his horror at being kept alive beyond his ability to be aware of life, Robert also has a chronic kidney condition that worsens and finally causes his hospitalization. An examination results in the medical conclusion that Robert must be operated on in order to save his life from imminent renal failure. Robert is told about the medical decision, but he refuses to give permission for the operation. The specialists, however, appeal to his wife and children for permission to operate; they also refuse, stating that they feel Robert has made a rational decision. The surgeons disagree. They are bound by oath and tradition to save Roberts life and they ponder the consequences of going ahead with the operation, declaring Robert incompetent to make the choice. Robert has executed a durable power of attorney, naming his wife attorney-in-fact, but laws in his State of residence are unclear as to whether attorneysin-fact can make critical care decisions. Jane, a 73-year-old, cheerful, vigorous female in the early stages of a progressive dementia, falls ill and is bedridden in her apartment. During her illness, her sister attempts to shop and cook for her, but Janes condition deteriorates and she becomes incoherent and incontinent. Her sister immediately petitions for, and is granted guardianship over Janes person and property. With Janes condition steadily worsening, her sister also arranges for her entry into the hospital. The hospital tells her sister that Jane will have to undergo major surgery. Her sister requests that the surgery not be performed, in accordance with wishes stated by Jane at an earlier time. The hospital, pointing out that Jane has no formal advance directive for nontreatment, and that the State laws are unclear about guardians having the authority to make critical care decisions, goes ahead with the surgery. Jane survives surgery but shortly thereafter goes into an irreversible coma. When medically appropriate, arrangements are made for nursing home care. With her nutrition and hydra tion provided by tubes running into her nose and stomach, Jane may live for many years in this fashion (14). These sketches bring painful clarity to several legal and practical problems that arise when individuals with a progressive dementia are no longer capable of making decisions regarding their own health and welfare. Each case involves a surrogate decisionmaker) or someone who is empowered to make certain decisions on behalf of another person considered incompetent to make the judgment personally. This chapter will exam169

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170 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias ine some of the issues surrounding surrogate deci sionmaking, particularly as it relates to the medical care of incompetent individuals. As part of this assessment, OTA commissioned papers entitled ( Surrogate Decisionmaking for Elderly Individuals Who Are Incompetent or of Questionable Competence, and ( Withholding and Withdrawing of Life-Sustaining Treatment for Elderly Incompetent Patients: A Review of Court Decisions and Legislative Approaches. These papers were discussed at an OTA workshop in Washington, DC, September 23, 1985. As a result of the workshop, OTA commissioned an additional paper on Legal Perceptions and Medical Decisionmaking. These three papers, which contain an extensive analysis of the surrogate decisionmaking questions discussed in this chapter, will be published in 1987 by Milbank Memorial Fund as a supplement of The Milbank Quarterly and by OTA (see contract appendix for more information). Surrogate decisionmakers are responsible for making decisions about an individuals health care, DETERMINING American society is based on the recognition of individual liberty. Competent individuals have the common law fundamental right to control their property, manage their personal affairs, and give or withhold consent for any bodily invasions such as medical treatment. As early as 1905, an Illinois court held that under a free government at least, the free citizens first and greatest right which underlies all othersthe right to the inviolability of his person, in other words, his right to himselfis the subject of universal acquiescence, and this right necessarily forbids a physician to violate without permission the bodily integrity of the patient (54). This concept of bodily integrity has been defined by the courts to provide that, for a patients consent to be valid, the physician must provide him or her with enough information about the proposed treatment that the patient can give an (informed consent (12). lifestyle, and estate. The limits on and types of decisions made depend on the type of surrogate and manner of appointment, as constrained by the laws of the State in which the incompetent individual resides. Surrogates may be chosen by an individual before he or she becomes incompetent, appointed by a judge after an individual is incompetent, or identified by laws in certain States that automatically grant family members surrogate decisionmaking powers. Surrogates may have detailed decisionmaking instructions the individual wrote before becoming incompetent, or they may have no instructions whatsoever. Although circumstances may mandate the need for a surrogate decisionmaker, the designation of one calls more into question than the single decision needed in response to a specific problem. The determination of incompetence sets into motion an exploration of such fundamental issues as an individuals autonomy and a surrogates ability to make decisions for another human being. COMPETENCE As clear-cut as these basic rights appear, they pertain only to persons assumed competent to make decisions. Questions surrounding a possibly incompetent individual remain: What makes a person competent in the first place? What standard of decisionmaking ability should be used to determine whether an individual is competent? Who should decide whether an individual retains personal liberties? Background and Precedents Societys role in questioning a persons competence and assigning him or her a surrogate decisionmaker is not a new one. Guardianship, and its concurrent notion of decisionmaking by a surrogate, dates back at least to ancient Rome. It was apparently conceived as a means of protecting the ward, or individual in question, and that persons property (7). That authority, based on the States

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Ch. 5Making Decisions for Those With Dementia l 171 police power and traditional role as parens patriae, imposes court-supervised external control over individuals not deemed capable of making informed autonomous decisions, such as minors or insane and incompetent persons (50). State statutes govern incompetency and surrogate decisionmaking, resulting in multiple approaches. In general, however, standards prompting the need for a surrogate can be divided into three types (50): 1. The Causal Link. Once the most popular standard, it is still used in some States. Fundamentally, it entails diagnosis of a condition i.e., a causethat creates the socially improper behavior exhibited by the ward. That diagnosis generally precludes guardianship hearings for those who are perfectly capable of caring for themselves and their property adequately but who do not choose to do so (e.g., an eccentric person who decides never to bathe). 2. The Uniform probate Code. This standard is more concerned with the health, well-being, and safety of the individual than his or her property management. It also emphasizes an individuals ability to both make and communicate decisions as the litmus test for competency. Notably, some State variations on this standard limit a finding of incompetence to situations where the health, safety, and physical necessities of an individual are endangered. 3. The Therapeutic Approach. This approach is increasingly favored in gerontological and mental health circles. It defines a defendant incapacity as a legal rather than a medical state, measured by his or her functional limitations. Thus, a court finding is based more on a persons capacities than on a diagnosis, and specific dysfunctions proved. Defining Competence medical must be Competence to make decisions is not like a light switch that turns on or off. Many elderly persons may be partially competent, or able to make some decisions but not others. They may be intermittently competentmore lucid and able to make decisions on some days than on others. Ideally, all individuals would be allowed to retain their autonomy and make decisions for as long as possible. Those who are partially competent would make decisions they are competent to make; those who are intermittently competent would make decisions when they were capable of making them. However, this ideal requires that the task of competence clarification (11)60) be of the greatest importance. It has been argued that: The point of a competence determination is to sort people into two classes: those whose decisions must be respected, and those whose decisions will be set aside and for whom others will be designated as surrogate decisionmakers. Competence, then, is not a matter of degreea person either is, or is not, competent to make a particular decision . [But] no single standard for competence is adequate for all decisions. The standard depends in large part on the risk involved, and varies along a range from low/minimal to high/maximal. The more serious the expected harm to the patient from acting on a choice, the higher should be the standard of decisionmaking capacity, and the greater should be the certainty that the standard is satisfied (11). An individual either is or is not competent for a specific task, i.e., to make a specific decision regarding, for example, health care, living arrangements, or financial affairs. For competent decisionmaking, a person should have the capacity for communication, understanding, reasoning, and deliberation, plus a relatively stable set of values. Appropriate standards for competence should focus on the process by which a decision is reached, and not on the decision itself (1 1,20). Determinations of competencewhether viewed as a matter of degree of capability or as an either/ or matterinvoke two important values. First, the standard of competence must protect and promote an individuals well-being; second, it must respect an individuals right to self-determination (11). (For more discussion of this issue, see ch. 8,) Functional assessment has been suggested as an aid in determining incompetence and subsequent delineation of decisionmaking powers by a surrogate (50). Functional assessment does not provide a diagnosis, only a description of behaviors; a judge may then evaluate whether such behavior indicates the need for a surrogate deci-

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172 l Losing a Million Minds: Confronting the Tragedy of A/zheimers Disease and Other Dementias sionmaker. It is a tool to use in assessing an individuals physical and emotional ability to function on a daily basis, and, consequently, his or her need for a surrogate. One problem associated with the functional assessment standard of competence is that, without a medical diagnosis, an individual with a treatable condition may unnecessarily be judged incompetent. one advantage of using functional assessment for individuals with dementia is that these disorders do not necessarily impair all areas of the brain equally, or even at the same rate. Thus, an assessment might support a person retaining some decisionmaking abilities, even if he or she is incompetent in other matters. However, some form of standardized functional assessment is needed with a failure to attain basic levels of physical and intellectual sufficiency leading to a legal verdict of incompetency, If an assessment takes place, the evaluator should apply the States objective standards; the wards previous mental and physical capacity are irrelevant. Assessments should be conducted by employees of community senior citizen centers, schools of nursing and social work, or public health departments, and presented to the court during surrogate appointment proceedings (16, 17)50). Consequences of Incompetence An individual found incompetentby a doctor, a family member, or a judgemay be moved from home, have money and property managed, and be unable to refuse medical treatment. He or she will lose most decisionmaking rights. Not everyone is competent to make the fundamental decisions faced by sick and elderly Americans. Who has a right to make decisions for another? What kinds of decisions can be made by one person for another? Should the surrogate have the right to make critical care decisions? How should a surrogate decisionmaker be chosen? What happens if a surrogate decisionmaker is not selected before an individual becomes incompetent? What can and cannot be accomplished through advance directives? What happens if there is no advance directive when someone becomes incompetent? How have the courts and the medical community responded to the issues raised by surrogate decisionmaking and advance directives? Who, if anyone, is liable for decisions made by a surrogate? These are the issues that are triggered by a determination of incompetence and form the basis for this chapter. There are no easy answers, and the questions themselves often act as lightning rods for controversy. In this largely undefined legal territory, highly personal family dilemmas can become public test cases. Forums of Competence Adjudication Strictly speaking, competence is a legal concept, but the legal and clinical standards differ considerably (30). Legally, an individual is presumed competent until a court declares otherwise and appoints a guardian (30). Practice differs from theory, however, in many cases of questionable competence. The determination of competence is usually made informally first by family or friends. The next informal determination is often made, with varying degrees of expertise, by the persons doctor, banker, or lawyer, who acquiesces to family requests to take responsibility for medical, fiscal, or legal matters. Legal competency proceedings are rarely initiated for medical reasons. Instead, if an elderly person is deemed incompetent by caregivers, they usually turn to family members to make decisions on behalf of the patient. It is not clear why clinical practice so diverges from legal standards. Physicians may be ignorant about the precise legal definition of competency or may regard legal proceedings as too cumbersome and time-consuming, with insufficient benefits to justify the cost (30). Families prefer to consult informally with the doctor in making decisions rather than go through the time, trauma, and cost of having someone declared incompetent. This is an efficient, if not extralegal, way of coping with the competency issues. Moreover, all parties may be happy with the arrangementas long as they continue to agree on what constitutes appropriate treatment (13). When mental status examinations are given, examiners check a patients orientation, memory,

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Ch. 5Making Decisions for Those With Dementia l 173 and ability to perform simple calculations (see ch. 8). However, mental status exams may not be able to assess a persons ability to comprehend medical treatments and alternatives, or their risks, benefits, and consequences. If a persons competence is questioned, a psychiatrist input is more likely to be sought than a courts. Such informal competency determinations, while often effective, do not provide due process of law and may unfairly prevent individuals from making personal decisions. The scope of this potential problem is unknown, but general consensus seems to be that almost all competence determinations are the result of genuine concern of families or friends. Courts also make competence determinations. Adjudications of competence, however, occur most frequently when competence is disputed. For instance, a doctor may feel that an operation is necessary for the health of a patient who refuses to consent. If there is reason to believe the patient is incompetent, the doctor may initiate court involvement. Likewise, a family who is concerned over a relatives aberrant behavior may seek a court determination of incompetence and appointment of guardianship. SURROGATE DECISIONMAKING When a determination of incompetence is made, either formally or informally, the surrogate decisionmaker assumes power to act for the incompetent individual. Surrogates may be selected by someone in advance of incompetence, self-appointed, or appointed by a court. Advance Selection Persons with clear personal, medical, and estate preferences may issue an advance directive. Advance directives are designed to allow a competent individuals choices and instructions to be recorded, and then followed after the person becomes incompetent. However, few people thus far have planned for future incompetence by instructing someone on how they would like to be treated in the event they are unable to make their own decisions about health care (56, app. B). Many are ignorant of their options, reluctant to face the thought of disability, or intimidated by the legal system. Recently, however, various consumer groups have begun publicizing the advantages of identifying a surrogate and writing advance directives for extending a persons autonomy and obviating reliance on the courts (41). However, ambiguity in State statutes and the relevance of health care facilities make it uncertain that an individuals advance directive will be followed. Durable Power of Attorney Durable power of attorney (DPA) is a modification of the standard power of attorney that permits an individual (principal) to transfer specified powers to another person (attorney-in-fact). The power may be broad in scope or limited. The fundamental difference between standard and durable power of attorney is that the former loses its validity when the principal becomes incompetent, and thereby is not useful for persons with a dementing illness. Durable power of attorney, authorized by State statute everywhere in the United States except in the District of Columbia, provides a means of surrogate decisionmaker designation that survives the incompetence of the principal (46). There are two types of durable power of attorney. The first takes effect on being signed by the principal and continues, unless revoked while the principal still has capacity, until death. The second, called a springing durable power, takes ef feet when the principal becomes incapacitated. In both types, the principal determines which powers are delegated to the surrogate. Concerned parties may petition a court to review the surrogates actions. The use of durable powers to transfer decisionmaking authority avoids many of the legal fees

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174 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias and court costs associated with a conservatorship or guardianship, and does not require bonding or supervision, Additionally, it can fully represent the principals choices and perspectives. Individuals may not be ready psychologically to execute this document before, or at the onset of, a dementia. For that reason and because of the generally progressive nature of impaired decisionmaking capacity, many lawyers recommend that already incapacitated individuals be brought to them during any reasonably lucid moment for explanatory purposes and signature (36,40). There are other problems with durable power of attorney. Many banks and lending institutions are unfamiliar with it and may not accept a durable power as legal proof that the principals finances are now under the control of another individual, unless the institutions own forms are used. That is impossible where the principal is already incompetent. Also, the validity of both types of durable power as applied to critical care decisions has been questioned in the courts and at patient bedsides (38,41,48). Durable Power of Attorney for Health Care California in 1983 passed legislation that created a new entity, the Durable Power of Attorney for Health Care (DPAHC). That power, also now available in several other States, attempts to address some of the issues surrounding the use of durable powers of attorney for critical care decisions (see table 5-l). It specifically empowers the attorney-in-fact to make medical care decisions. The DPAHC, which is a springing power, allows the principal to state, in detail, what kinds of medical intervention or life-sustaining systems are acceptable (22)24,36,41). DPAHCs and living wills are the first legal measures that give individuals the ability to direct treatment decisions after incompetence. For people to make informed decisions, they need to be educated regarding their rights. They need to know what legal devices are available, under what circumstances they apply, and how to take advantage of them. Living Wills Living wills are another mechanism for expressing the principals intent while competent and for honoring his or her desires once he or she is incompetent and death is imminent. A living will may declare the principals intent on the use or refusal of life-sustaining procedures in the event the person cannot be reasonably expected to recover from extreme physical or mental disability. Statutes protect health care providers from civil and criminal liability for withholding or withdrawing life-sustaining treatment in compliance with a living will, and state that refusal of life-sustaining treatment by a terminally ill patient does not constitute suicide for insurance or other purposes. In most States, a physician who is unable to comply with a patient directive for religious or personal reasons is obliged to transfer the patient to the care of someone who can comply. Failure to transfer such a patient may constitute unprofessional conduct on the part of the doctor or hospital (47,63). However, living wills are frequently ambiguous, lacking specific instructions tailored to specific medical needs, and may request something that the State is unwilling to countenance. For instance, uncertainty exists regarding an individuals right to refuse artificial food or hydration through the living will (30). The legality of living wills maybe unclear, and the document may draw uncertain responses from physicians. Nevertheless, or perhaps in response to these problems, the number of States with legislation on living wills is growing (see table 5-2). The States that did not recognize living wills as of July 1986 were Kentucky, Massachusetts, Michigan, Minnesota, Nebraska, New Jersey, New York, North Dakota, Ohio, Pennsylvania, Rhode Island, and South Dakota. State-by-State variations include requirements for executing a valid living will and conditions making one applicable (see table 5-3). A document that is legally valid in the State where it was signed, for example, may not always be useful elsewhere. Most States provide a form that may be used to create a living will, but also permit individual variations as long as specific State requirements are

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Ch. 5Making Decisions for Those With Dementia 175 Table 5-1 .Special Requirements for Creating a Durable Power of Attorney for Health Care State Notary required Filing required Other Arkansas . . .Yes (or approval of Probate Court Probate Court) California a . .Yes (or signed by two witnesses) Connecticut . .Yes Florida . . No Minnesota . . Yes Missouri. ... . Yes New York. . . Yes North Carolina .Yes Oklahoma . . No Rhode Island a . No South Carolina .Yes Wyoming . . No If patient is in nursing home, one witness must be patient, advocate, or ombudsman Must be accompanied by statutory notice or signed by an attorney Must be accompanied by statutory notice Only a spouse, parent, adult child, sibling, niece, or nephew may be appointed Recorder of deeds Must be accompanied by statutory notice Register of deeds (copy with clerk of Superior Court) Clerk of State District Court Register of Mesne Conveyance Clerk of District Court (copy with clerk of county court where principal resides) Must be approved by judge of State District Court At least one witness must not be related by blood, marriage, or adoption and must not be entitled to any part of the makers estate Requires three witnesses Must be approved by judge of State District Court %alifornia and Rhode Island have statutory forms for durable powers of attorney for health care which include a notice or warning to persons executing the document. SOURCE B Mishkin, A Matter of Choice: Planning Ahead for Health Care Decisions, Senate Special Committee on Aging, 1986. met. To avoid difficulties at the precise time the is no clear definition of when an illness becomes document is most needed, living wills are best terminal. As two observers note: drawn by a well-informed attorney. The States received some direction from the National Conference of Commissioners on Uniform State Laws in August 1985, when proposed uniform living will legislation was ratified, but there is still no consensus. Knowledgeable observers expect a more standard approach to be adopted by a significant number of States in the next few years (l). States also differ in the conditions they set for a living will to become effective. Many States, for Some people may consider a person who is expected to live six months terminal, while others may regard a patient as terminal only when survival is expected to be one month or one week. Some physicians consider patients terminally ill only when they are moribund and will die in a few days no matter what treatment is given. Some people may consider a patient terminal when cancer is first diagnosed, while others apply this label only after metastasis develop or a relapse occurs after treatment (30). example, require a person to be terminally ill If the diagnosis of terminally ill is taken to mean in order to activate a living will. However, there imminent deathas it frequently isthen such

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176 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias Table 5.2.Special Limitations on Living Wills (table complete as of September 1986) Categorically Effective only for Must sign after Not valid during may not withhold given number terminal diagnosis State pregnancy food or fluids of years to be binding Alabama x Alaska X a Arizona X a x California x 5 x Colorado Xa x Connecticut x x Delaware x Florida x x Georgia x x Hawaii x x Illinois x x Indiana x X b Iowa Xa x Kansas x Maine x Maryland x x Mississippi x Missouri x x Montana X a Nevada x New Hampshire x x Oklahoma x x Oregon x c South Carolina x x Tennessee x Texas x Utah x X d Washington x Wisconsin x x Wyoming x x alf fetus could develop to point of live birth. bMay not withhold appropriate nourishment and hydration. cMay withhold if patient CWII_tOt bkab. d unle ss declarant specifically authorizes. SOURCE: B, Mishkin, A Matter of Choice: Planning Ahead for Health Care Decisions, Senate Special Committee on Aging, 1986. a requirement negates an incompetent individuals suffering from deterioration of various organ sys ability to direct medical care through a living will terns or the combined effects of degenerative dis until the last few days or weeks (i.e., victims of orders. Some States (California, Idaho, and Oklaserious accidents or strokes, who are in a persisthoma) require living wills to be signed after a ent vegetative state, may not be considered terterminal diagnosis; thus, a living will would not minally ill even if they would not wish to live help any of the patients just mentioned. Many of for years in a coma if recovery were impossible). these people would not want to be kept on lifeThe living will also might apply in the case of sustaining systems if they no longer had any elderly persons who are in an irreversible decline, awareness of life, but a living will statute relying

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Ch. 5Making Decisions for Those With Dementia 177 Table 5-3.Witness Requirements for Living Wills (table complete as of September 1986) Witness may not be: Responsible for Related by blood Heir/claimant Declarants Employed by declarants declarants Nursing home patient State or marriage to the estate physician health care facility health care costs requires special witness . x .. .,, ,., . . x ., .,. . x ,. .,. or co-patient ,. .,. . . x x x x Alabam a x Alaska x Arizona x Arkansas ,,, .. Californi a x Colorad o Connecticut Delaware X District of Columbia x Florida one of two witnesses Georgi a x Idah o x Illinois x Indiana only parents, spouse, and children x x x x x x ., x x x x x x x x x x x x x x x x x x x x x x x Patient advocate or ombudsman or any M.D .. Patient advocate or ombudsman Patient advocate or ombudsman x x x x x x . .., .. x x Medical director Iowa ., Kansas Louisian a Maine Maryland Mississipp i Missouri Montana Nevad a New Hampshire New Mexico North Carolina Oklahoma Oregon x x x x .., x x x x x x x or co-patient x x x x x x x Medical director x x x x or co-patient x x Individual designated by Department of Human Resources Hospital or nursing home resident requires ombudsman South Carolina a x x x x Tennesse e Texas Uta h Vermont Virginia Washington West Virginia Wisconsi n Wyomin g x x x x x x x x x x x x x x or co-patient x x x x x x x x x x %uth Carolina requires three witnesses and notary SOURCE B Mlshkln A Matter of Choice Planrung Ahead for Health Care Oectstons, Senate Special Committee on Aging, 1986 on (terminal illness would not permit them to another without formally being charged to do so direct their own care and treatment after inthrough legally recognized proceedings. De facto competence (47). surrogates usually are a persons close relatives or friends. For many elderly individuals who do Informal, or Self-Selection not plan ahead by appointing a surrogate through a durable power of attorney, de facto surrogate De facto surrogate decisionmaking, which is fredecisionmaking is easier and less traumatic than quent, consists of an individuals assumption of the guardianship process. In effect, de facto surthe normal financial and personal decisions of rogates act on anothers behalf in the same way

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178 Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias that court-appointed surrogates dountil such rare time as someone challenges their authority. The use of de facto surrogates eases the potential burden on the court system, but it also places peoples liberties at risk, Legal advance appointment of a surrogate allows the principal a choice of surrogate that may differ from the de facto surrogate. Many people rely on their physicians to make decisions for them. In most cases, particularly where there are also sympathetic family members involved, that approach is adequate. It is timetested and remains the favorite of a vast majority of physicians (23). However, it presumes a strong concordance of views between physician, family, and facility. Also, nursing home residents are frequently transferred to acute care hospitals shortly before death (see ch. 10). Thus, the individuals regular nursing home physician, who may have agreed to a wish for nontreatment, might not be the physician responsible for the persons hospital care. De facto surrogate decisionmaking is also more easily abused, as it occurs without a courts involvement. Only a legal challenge to the de facto surrogates authority can initiate court review, and the decision to make that challenge can be traumatic and costly to the person bringing suitan individual who may feel it is not his or her place to intervene. The dilemma is how to protect people who do not appoint or instruct a surrogate personally, without encumbering the court system or the emotional and financial resources of families. It is unclear if this is a problem; the number of persons affected is unknown and there is no available data. Selection by Formal Appointment Conservatorship and Guardianship Conservatorships and guardianships are determined and supervised by the court. Specific State statutes and practices vary. There are two types: conservatorship (or guardianship) of estate covers finances; conservatorship (or guardianship) of person covers residency, certain kinds of health care and social service decisions, and other personal matters. The appointment is obtained by petitioning the court and presenting evidence of a persons relevant incapacity. A guardianship proceeding generally requires two steps. First, a proposed ward must have a specified diagnosis or disability. Second, as a result of that disability, the proposed ward must be unable to make decisions on his or her own behalf, The Uniform Probate Code defines an (incapacitated person as one who is impaired by reason of mental illness, mental deficiency, physical illness or disability, advanced age, chronic use of drugs, chronic intoxication, or other cause (except minority) to the extent that he lacks sufficient understanding or capacity to make or communicate responsible decisions concerning his person (58). Courts and legislatures increasingly recognize that competence may wax and wane over time, and that patients may have the capacity to make some choices, but not others. In response, a growing number of States now permit limited or partial guardianship, in which surrogate decisionmaking authority is confined to specific areas. Some statutes allow courts to structure guardianship to fit the needs of an individual ward, while others require only that the guardians powers be drawn as narrowly as possible (47). Conservatorships and guardianships provide an incapacitated individual with as much legal protection, through court involvement, as possible. on the other hand, they can incur high and continuous legal fees (IS), increase demands on the judicial system, and offer no guarantee that decisions always will be made in the best interest of the incompetent person or in keeping with that persons desires. Guardian ad Litem Another form of guardianship occurs when a specific problem, such as authorization for surgery, must be solved by the court and one of the concerned parties needs representation. In this instance, a (guardian ad litem may be appointed to represent an arguably incompetent person in that specific matter. Representative Payee A representative payee is, in effect, guardian of a patient social security or other government benefits. Neither conservatorship nor power of

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Ch. 5Making Decisions for Those With Dementia 179 attorney is recognized by the Social Security Administration, Veterans Administration, or many other government agencies as a legal basis for transferring benefit payments to a person other than the beneficiary. Many agencies specify that an individual wishing to act as a representative payee for someone must obtain a physicians written statement that the beneficiary is incapable of handling his or her financial affairs. The procedure for the appointment of a representative payee is much less formal than that entailed in a court competency hearing, the determination resting solely within the discretion of the head of the appropriate agency. In many cases the physician whose recommendation will carry great credence sees the patient only in stressful settings like the hospital or doctors office, and communicates with the patient only about medical care, not the handling of financial affairs, Government agencies may transfer payment monies to a representative payee even if the principal has not been deemed incompetent by a court (28,29, 53)74). Further, although empowered to request an accounting, government agencies do not ordinarily audit the activities of the 4 million to 5 million representative payees to ensure that the transferred monies are being spent in the interests of the principal. This practice of nonscrutiny led to a 3-year lawsuit, instigated by a woman in Oklahoma, whose Supplemental Security Income payments had been fraudulently used by her representative payee sister for several years. In 1983, the U.S. District Court for the Western District of Oklahoma did find, among other things, that the due process clause of the fifth amendment required that the Social Security Administration implement mandatory, periodic accounting procedures. Margaret Heckler, Secretary of Health and Human Services and the defendant in the case, submitted a plan whereby 0.025 percent of representative payees would have their accounting short form reviewed (74). In 1984, the court found that the substantial interest of Social Security beneficiaries for whom representative payees have been appointed could be adequately protected only by requiring universal annual accountings, Although initially acquiescent, the Department of Health and Human Services (DHHS) returned to the court in April 1986 and requested, once again, that it not be required to request or review representative payee accountings pending further court decisions. The court granted that stay, and the future of accountings by representative payees remains in question (19, 28,62,70). Further complicating this issue is the Social Security Disability Benefits Reform Act of 1984 (Public Law No. 98-460), Section 16 of which provides that where payment is made to a person other than the entitled individual, an annual accounting is required, with the Secretary establishing and implementing statistically valid procedures for reviewing such reports. DHHS has not implemented this requirement. Section 16 also sought a report to be prepared for Congress in 1985. That report was to examine the systems by which accountings would be reviewed, the problems inherent in the systems, and the problems inherent in the representative payee system. A six-page report was submitted in September 1985, containing no data on rates of auditing, no details about ascertaining mental competence for purposes of assigning representative payees, no description of procedures for identifying misuse of funds, and no special safeguards for those judged mentally incompetent who are cared for outside State mental institutions (19,68). Family Consent Statutes Under family consent statutes, a surrogate is identified in advance by the State and is automatically vested with certain powers, unless an individual has previously designated a different surrogate decisionmaker. Seventeen States have enacted laws clearly authorizing family members to make health care decisions on behalf of incapacitated adultsat least for those who are terminally ill (see table 5-4). Case law in California, Connecticut, Florida, Georgia, and New Jersey supports the right of family members to make health care decisions, including decisions to forgo treatment, for terminally ill or comatose patients. The family consent statutes remove doubts surrounding the legal basis for such decisions and permit doctors and other health care providers to follow the directions of family members without fear of subsequent civil or criminal liability (47). The provisions become effective when a patient is incompetent, but the majority of statutes do not at-

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180 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias Table 5-4.Family Consent Provisions Provisions State Statute Family may make health care decisions for incapacitated adults Family may make health care decisions for terminally ill and incapacitated adults (including termination of treatment) Arkansas . . .Ark. Stat. 82-363 (1976) Georgia. . . .Ga. Code $31-9-1 (1982) Idaho. . . . Idaho Code 49-4303 (1985) Louisiana . . La. Rev. Stat. Ann. tit. 40, 1299.53 (1977) Maine . . . Me. Rev. Stat. Ann. tit. 24, 2905 (1985) Maryland a . . Md. Ann. Code 20-107(d) (1984) Mississippi . . Miss. Code Ann. 41-41-3 (1985) Utah . . . .Utah Code Ann. 78-14-5(4) (1977) Florida . . . Fla. Stat. Ch. 84-85, 765.0 (1984) Iowa . . . .Iowa Code Ch. 144A.1-144A.12 (1985) Louisiana . . La. Rev. Stat, tit. 40, 1299.58.5(A) (H.B. 795, 1985) New Mexico . N.M. Stat. Ann. 24-7-5, as amended by S.B. 15 (1984) North Carolina b . N.C. Gen. Stat. 90-322(b), as amended by S.B. 240 (1983) Oregon b . . .Ore. Rev. Stat. 97.083(2), as amended by H.B. 2963 (1983) Texas . . . .Tex. Civ. Stat. Art. 4590h, as amended by H.B. 403 (1985) Virginia. . . Va. Code Ann. 54-325.8:6 (1984) Utah c . . . .Utah Code Ann. $$75-2-1101-1118 (1985) a E xcep t for sterilization, abortion, and treatment or hosdtatization for a mental disorder. Opatient must be cofnatc)se. Coriginal law, passed in IW7, specified only incapacitated adults. SOURCE: B. Mishkin, A Matter of Choice: Planning Ahead for Health Care Decisions, Senate Special Committee on Aging, 1986. tempt to define incompetence or require a formal competency hearing. Thus, the competency determination generally is made by the physician. Since most of these provisions are built into living will statutes, only families of the terminally ill are eligible to use them (see table 5-5). The National Conference of Commissioners on Uniform State Laws adopted a Model Health Care Consent Act in 1982 (67). The model act states that when a patient is incompetent to consent to or refuse treatment, and has not designated a surrogate decisionmaker, decisions maybe made by a spouse, adult child, parent, or adult sibling. Unlike some State statutes giving priority to one family member over another, the model act does not differentiate between family members, nor does it suggest how to proceed if family members disagree. It does emphasize that surrogate decisionmakers should base their decisions, inasmuch as possible, on the patients previously expressed preferences. Thus far, the model act has had little effect on actual State legislation. Alternative Forms of Surrogate Decisionmaking Public guardianship programs vary somewhat from State to State, but typically are overseen by a county office of the public guardian, ombudsman, or court investigator. These offices supervise and manage guardianship cases, sometimes appointing private individuals as conservators where there are substantial estates. In these cases, it is not uncommon for a financially sophisticated friend of the court to be appointed (48). The private practice of surrogate management is also becoming more common. Here, bonded individuals manage estates on behalf of their clients for a fee. Because of difficulties in some public guardianship programs, private for-profit programs are gaining some favor in the legal community. As a safeguard, it has been suggested that these private programs be subject to regular reporting requirements (10,39,49).

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Ch. 5Making Decisions for Those With Dementia 181 Table 5-5.individual State Provisions of Family Consent Laws Patient must be Family members Consent not valid for Terminally Adult Adult Priority Mental State ill Comatose Spouse child Parent sibling Other given Abortion Sterilization health care Arkansas ., .., Florida x Georgi a Idah o Iowa x Louisian a Louisiana c ... x Main e Marylan d . Mississipp i New Mexic o X or X North Carolin a X and X Orego n X and X Texa s x Utah ., . Virgini a x x x x x x x x x x x x x x x x x x X nearest grandparen t relative X b X nearest x relative X a X a grandparent x x x . any competent relative X b x x X a X a grandparent a X X X X X b X b othe r x .., ascendants or descendants x nearest relative xx x grandparent x x x x xx x grandparent . xx x family x .. members d x x x . x . . X b x x X b X nearesti X e relative x X a X a grandparent . X X nearest x relative a For mmor child bMalorlfy Of fhls class required (If available) CLou151ana has IWO family consent laws d,4/1 who can be contacted must agree on what patient would chwse eRequlreS consent Of at least two family members, It reasonably available SOURCE B Mlshkln A Matter of Choice Planning Ahead for Health Care Declslons Senate Special Commttee on Aging, 1986 There are also numerous private social service organizations that assist in establishing eligibility for public benefits. They generally support family members who may live too far away to be of help on a daily basis. Families may use this method to avoid the trauma and cost of a court hearing on conservatorship. Hospitals and nursing homes also designate surrogates, such as patient advocates or ombudsmen. However, because the nature and philosophy of each facility can vary, defining the role of surrogates designated in this way is difficult. These surrogates typically act more as advocates than decisionmakers or case managers. In addition, because the surrogate is employed by the hospital or nursing home rather than the patient or resident a conflict of interest may occur. Cases of financial abuse where surrogates are employed by a facility have been documented (3,5,23,25,26,69, 71). Occasionally, when an individual has no surrogate decisionmaker or when there is disagreement between family members and caretakers, an institutional ethics committee (IEC) maybe used to assist in making a decision. Ethics committees are becoming a popular means of considering difficult medical treatment situations on behalf of an incompetent individual. They received their initial stamp of approval when the New Jersey Supreme Court proposed that such a group play a role in the decision about whether to disconnect Karen Anne Quinlans respirator. In that instance the committee was to provide a prognosis for Quinlans recovery, the outcome of which would help determine the courts decision (35)59, 72). These committees have faced numerous operational questions, however (64)65). In 1983, only 1 percent of the Nations nearly 2,000 acute care hospitals had a functioning IEC. That same year,

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182 Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias the first national conference on IECs was held (Institutional Ethics Committees: Their Role in Medical Decision Making, sponsored by the American Society for Law and Medicine and Concern for Dying, Washington, DC, Apr. 21-23, 1983). In addressing what role an IEC may play, one law professor drew up three possible models: 1. in the optional-optional model, the commit2 tee acts on a standby basis, with no one being required to make use of its services or abide by its recommendations; in the mandatory-optional model, physicians would have to consult the IEC when faced with a critical decision, but would not be required to adhere to its recommendations; and 3. in a mandatory-mandatory model, physicians would be compelled to consult the IEC when faced with a critical decision, and compelled to carry out its decision (61). One underlying dilemma of IECs has been put this way: Either ethics committees will have well-grounded criteria for making recommendations in particularly difficult cases, or they will not. If such criteria are widely accepted, the committee seems redundant; why not appeal directly to the criteria? And if such criteria are not widely accepted, the committee recommendation may seem arbitrary and fail to persuade some of those whose decisions the committee is reviewing (Callahan, as quoted in 34). Despite these lingering questions, ethics committees are increasingly used in the hospital setting. There is some support, at least in the nursing community, for IECs having the authority to make legally binding critical care decisions (31,44). Several other unrestrictive, extralegal alternatives to conservatorship of person are referral, case work, and case management. (For more information on these nonlegal alternatives, see ch. 6.) The Influence of Setting How a surrogate is chosen depends, in part, on the person needing the surrogate and his or her environment. Those choosing a surrogate from home frequently rely on family, friends, the local banker, the personal physician, and others who compose the informal support network. In domiciliary care facilities (DCF) or board and care homes, the operator or a staff member may be acting as the surrogatewith or without formal legal appointment or even informal approval of the patient. That is problematic. These facilities generally are not as well defined or visible in a community as a nursing home. They frequently are supervised haphazardly if at all, by government agencies. Many are unlicensed and lack the benefit of ombudsman involvement. Because reporting responsibilities are few, surrogate decisionmaking generally devolves to the DCF operator with no external oversight (26)53,69). Special problems may exist for those residents of nursing homes who have no interested relatives or friends. For those individuals, medical decisionmaking often consists of informally turning to a doctor or the nursing home staff, with some input from any available relatives. That is particularly true of Medicaid patients without concerned families, who lack large material assets to attract potential surrogate managers. Decisions are quite often made by physicians with some input from any members of the family who are available. In hospital settings, patients may be in rapidly failing health, clearly incompetent, diagnosed as terminal, or headed for a nursing home. Hospital administrators are wary about encouraging patients to sign documents appointing surrogate decisionmakers and about giving what maybe considered self-serving advice. They have expressed concern that the acute care environment is inconsistent with the concept of competency and that they will be charged with the responsibility of certifying competence in all cases. Additionally, they worry that liability insurance coverage will be jeopardized by their delving into an area that is not formally part of their health care mandate (23). The incompetent or questionably competent person in these health care settings has a role in selecting a surrogate. Even when there is some question as to the individuals capacity for decisionmaking, courts tend to respect that individuals decision. Nevertheless, patients, family members, caretakers, and social workers need to be educated and encouraged regarding the prompt identification of a surrogate (45).

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Ch. 5Making Decisions for Those With Dementia l 183 DECISIONS MAD E The previous section identified the various types of surrogates, explained how they are selected, and detailed the extent of their powers and limitations. once a surrogate is in place, he or she must begin the sometimes difficult task of making decisions. How does a surrogate make crucial decisions for an incompetent person? What criteria does the surrogate take into account? What conflicts of interest might the surrogate encounter in making a decision? Who is liable for decisions made by the surrogate? Criteria for Making Decisions Once a patient has been deemed incompetent to make all or some decisions, some complex issues arise. Who should decide for the incompetent patient? By what set of principles should decisions be made? These questions have been addressed in dramatically different ways. Answers to the first question have been sought from a legal perspective, but answers to the second tend to be explored from an ethical framework. Thus, decisionmaking no longer is clarified by court rulings and State legislation; it operates in the ambiguity of what is right, or good, or ethical. Briefly, various ethical principles can guide a surrogate in making a decision. The most fundamental of these are: Ethical value principles identify the basic ethical values to be used in dealing with incompetent individuals. These values include respect for autonomy, concern for well-being, and justice in a patients access to care and resources. Guidance principles give hints or direction as to how decisions should be made. These principles include: 1) substituted judgment, or choosing the way the individual, if competent, would choose; 2) best interest, or choosing what most benefits the individual; 3) advance directive, or choosing the way the individual has expressed in a previously written directive, such as a living will (11). It is useful to compare and contrast these three guidance principles to understand how the use of one or another may vastly alter the outcome of the surrogates decision. BY A SURROGAT E The Best Interest Principle states that a surrogate is to choose what will best serve the patient interests, The qualifier best indicates two important factors: some interests are more important than others in that they make a larger contribution to the patients good, and a particular decision may advance some of the patient interests while frustrating others. Thus, according to the Best Interest Principle, the surrogate must try to determine the net benefit to the patient of each option, after assigning weights reflecting the relative importance of various interests affected when subtracting the costs from the benefits for each option. In contrast, the Substituted Judgment Principle states that a surrogate is to choose as the patient would choose if the patient were competent and aware both of the medical options and of the facts about his or her condition, including the fact that he or she is incompetent. Thus a surrogate who must decide whether antibiotics should be given to an unconscious man with terminal cancer might consider the following as a test of the Substituted Judgment Principle: If the patient miraculously were to awaken from his coma for a few moments, knowing that he would soon lapse back into it, would he choose to have antibiotics admin istered? [The Advance Directive Principle] states that where a clear and bona fide advance directive is available, it is to be followed. There are two broad types of advance directives: instructional an d proxy . An instructional advance directive is an instrument whereby the patient when competent, specifies, perhaps only in rather general terms, which types of treatments he or she wishes to have or, more commonly, not have, under certain circumstances, should the person become incompetent . In a proxy advance directive, a competent individual designates some other individual or individuals to serve as the surrogate should the person become incompetent, These two types of advance directive maybe combined: An individual might designate his or her spouse as proxy but include instructions that place limits upon that persons discretion to decide the individuals fate (11). Which principle is followed may make a lifeand-death difference to the patient. For example, acting in the patients best interest may not be

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184 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias the same as acting on substituted judgment or following an advance directive. Simply put, competent people sometimes make choices contrary to their own best interests, so these principles can be incompatible at times. Further, following substituted judgment may lead to a different decision than following an advance directive. What a person would choose if he or she were competent during an illness may be different from what the person would choose at an earlier time, projecting ahead to a time of incompetence and illness. Since following different principles may yield different results, it is necessary to assign them some priority in resolving situations where more than one principle could be used. In addressing this issue, the Presidents Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research proposed that where a valid and clear advance directive applies, it should take precedence over any other guidance principle, including best interest and substituted judgment (57). Why Surrogate Decisions Are Not Always Respected Despite the legally approved role of surrogate decisionmakers, their decisions may not be followed. There is no single explanation why decisions by court-appointed or de facto surrogates are not necessarily implemented. The uneasy coexistence of law and medicine, the perceived and actual authority of physicians, the emergence of medical technologies that prolong life, quality-of life issues, a nationally heightened sensitivity to individual autonomy, an increasingly litigious society, and a growing population of incompetent elderly Americans all have contributed to the current legal, ethical, medical, and moral confusion over critical care decisionmaking by surrogates. Questions raised by surrogate decisionmaking have been present all along, but now they are complicated by new options for medical treatment, the multitude of decisions to be made at each step in a disease, and the sheer number of cases. The Chairman of the Presidents Commission addressed this issue in a report on decisions to forgo treatment: Although our study has done nothing to decrease our estimation of the importance of this subject to physicians, patients, and their families, we have concluded that the cases that involve true ethical difficulties are many fewer than commonly believed and that the perception of difficulties occurs primarily because of misunderstandings about the dictates of law and ethics. Neither criminal nor civil law precludes health care practitioners or their patients and relatives from reaching ethically and medically appropriate decisions about when to engage in or to forgo efforts to sustain the lives of dying patients (57). Nonetheless, misunderstandings about the dictates of law persist, and can strongly influence medical decisionmaking and action: Undue concern with imagined legal requirements and consequences may cause the physician to neglect or disvalue other, seriously significant factors that should figure prominently in the calculus of withholding or withdrawing life-prolonging treatment (30). The assessment of a patients competence and the allocation of decisionmaking authority also may become hopelessly lost in the context of medical practice. Three separate studies of decisionmaking in do not resuscitate orders of patients found that 18 to 20 percent of competent patients, and 19 percent of the families of incompetent patients, did not participate in decisionmaking (37). A study conducted later at three other teaching hospitals found that for 78 percent of patients who were to be resuscitated, the decision was made without either patient or family input (21). Yet there is evidence that physicians are unable to determine accurately patient preferences about resuscitation without asking them directly. Reasons given by physicians for not involving either patient or family in such decisions include family requests that the patient not be involved, patient requests that the family not be involved, the belief that the doctor already knows what the patient wants, physician awkwardness in broaching the subject with the family, and the physicians belief that medical indications were decisive (4). Physician uncertainty over the authority of advance directives is evidenced by data showing that most doctors would not resuscitate their patient in the event of cardiac or respiratory arrest if the patient had left written instructions not to pro-

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Ch. 5Making Decisions for Those With Dementia 185 long life through artificial means. However, if a patient left written instructions to do everything possible to prolong life, only about half the physicians polled said they would resuscitate (56). If some physicians question the authority of advance directives, still others appear to be unaware of their patients treatment preferences. Several studies indicate that physicians often do not have a good understanding of their patients wishes concerning resuscitation, and that although they agree that such matters should be discussed with their patients, they actually do so infrequently (4). A recent report on State Medical Disciplinary Boards by the American Medical Association includes physician failure to comply with natural death act or failure to transfer patient care when physician cannot comply with patients request to withhold life-sustaining treatment as grounds for disciplinary action (63). Questions of Liability in Medical Decisionmaking Traditionally, law and medicine did not occupy an antagonistic relationship. Rather, this relationship was fundamentally a symbiotic, mutual, and cooperative one. In fact, the medical profession has aggressively co-opted the legal system over the years and used the laws authority to serve its own ends. Illustrations of this interaction include the medical professions traditional power to determine for itself the standards of care to be applied in a malpractice action, the standards of information disclosure that constitute informed consent, and licensure/discipline standards for determining who is allowed to be a part of the medical profession. The role of government in influencing such standards has historically been negligible (30). A physician or other health care provider may not administer treatments, diagnostic tests, or surgical interventions without the consent of the patient. If medical interventions are administered without consent, the doctor and health care facility may be sued for assault and battery or for negligence (47,55). That precept was upheld in a recent case, when relatives of a patient who was placed on a life-sustaining system after she suffered a respiratory-cardiac arrest that left her in a chronic vegetative state filed action seeking damages for the time the patient was on lifesustaining systems. Although the trial court dismissed the motion, the Court of Appeals of Ohio, Summit County, reversed the decision and held that a cause of action exists for wrongfully placing and maintaining a patient on life-support systems, contrary to the express wishes of the patient and her family (33). The second trial was decided in favor of the doctor, and the hospital privately reached a financial settlement with the family before the verdict was reached. During a second appellate proceeding, the doctor also privately settled with the family (73). Complicating matters, however, is the distinction often cited between withholding [not starting) treatment and withdrawing or removing it. Although philosophers have argued that there is no significant moral difference between the two acts, many caregivers continue to worry that stopping existing treatment like a mechanical ventilator or chemotherapymay be considered direct action that entails higher liability risk (6, 18,27,30, 66). Grayer still is the question of whether doctors recommend treatment in these cases because they believe it is clinically indicated or because they are concerned about their liability if they do not no matter what the family wants (3o). Ironically, although unwanted cessations of treatment theoretically may lead to lawsuits, there are numerous cases of families seeking a court order to stop treatment, but court orders to continue treatment have been sought only rarely and in unusual circumstances (l). Physicians, however, perceive themselves in a double bind. On one hand, families increasingly request that treatment be withheld or withdrawn; on the other hand, in 1982 two California physicians were charged with first degree murder after discontinuing mechanical ventilation and intravenous fluids to a persistently vegetative patienteven though the family had asked that this treatment be discontinued (2). Although that case was dismissed by a court of appeals and remains one of a kind, it made a deep impression on physicians (3o). More recently, the Massachusetts Supreme Court upheld the right of an incompetent patient not to receive nutrition and hydration through a gastrostomy tube. Although it was widely agreed that the patient would not

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I & l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias have wanted such treatment, his health care facility refused to discontinue it. The court, which respected the facilitys decision, ruled that the patient must be transferred either to his home or another facility willing to comply with his wishes (9). Questions of Abuse of Surrogate Decisionmaking Powers Theoretically, a person with a dementing illness has the same right as any other individual to bring suit against those associated with his or her care. In practice, however, that may prove difficult. Where an individual has been formally deemed incompetent, has a history of confused behavior, or has depended on a de facto surrogate or attorney-in-fact, that persons views and statements are seriously discredited both in the courts and in the community. Moreover, people with dementing conditions may be suspicious, paranoid, and argumentative as part of the normal course of their diseases. Thus, while a person has ample theoretical recourse against abuse, those suffering from dementia are poorly situated to avail themselves of it. They must rely on the concern and advocacy of others. The legal options against abuse of surrogate powers vary. De facto surrogates, with no formal power, could be challenged by another person. Where power of attorney has been granted and the principal is still competent, the principal may revoke the status of the attorney-in-fact, Although the ordinary power of attorney is not legally recognized where the principal is no longer competent, it may continue in fact until challenged by a concerned individual. A durable power of attorney could also be challenged in court by another person on the basis of abuse. For guardians or conservators, another individual or the court (under its continuing jurisdiction to review conduct) might challenge an abuse of decisionmaking power. Individuals as Research Subjects Progressive dementias and especially Alzheimers disease-can be difficult to diagnose, understand, and treat. There is compelling justification for research directed at understanding and controlling or preventing these diseases. The nature of the illnesses limits the use of animal research models, and human subjects are necessary for even the early stages of scientific research. Thus, the social value of finding a cure or prevention for progressive dementias must be balanced against the protection and best interests of individuals who cannot understand or consent to research participation (42,52). Until the early 1970s, individuals in prisons, mental health facilities, and nursing homes were readily used as research subjects. These groups presented unique research opportunities because of the researchers ability to carefully control and monitor the subject and his environment and to find subjects who willingly or unwillingly could participate in studies. The research projects, which ranged from the nonintru sive to the very intrusive, included a wide variety of studies aimed at obtaining information on medical and psychological problems, Few bothered to question the propriety of using the mentally disabled for these purposes. By the early 1970s the publics attention was focused on certain research projects that were difficult to categorize as anything but abusive. For example, it was disclosed that some retarded residents at Willowbrook State Hospital in New York had been deliberately infected with viral hepatitis and that many of the residents then contracted this illness. It was also revealed that 22 geriatric patients at the Jewish Chronic Disease Hospital were injected with foreign cancer cells without their knowledge or consent (8). These revelations led to public concern over unconsenting mentally disabled individuals being used in any research, and to the congressional establishment of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research in 1974. Some restrictions on when the mentally disabled may be used as research subjects, along with measures to protect the disabled who do participate in research, resulted from the Commissions and the publics concern over this issue. Federal guidelines provide little specific legal and ethical guidance, however, as applied to elderly individuals with dementia. Even if an elderly person with a dementing illness could give prior valid consent, as an advance directive in a durable power of attorney or

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Ch. 5Making Decisions for Those With Dementia l 187 through a decision made by a surrogate, there would still be the question of continuing consent: As research experimentation grows and changes, would the incompetent subject or surrogate still be in favor of any specific experiment and what kind of mechanism would enable him or her to choose to participate on a case-by-case basis (51)? In November 1981, the National Institute on Aging held a conference on the ethical and legal issues related to informed consent for Alzheimer patients. That meeting led to the creation of a task force to formulate guidelines for use by researchers, policy makers, and institutional review boards (IRBs) concerned with experimentation regarding Alzheimers disease or involving Alzheimer patients (43), In addition to proposing guidelines, the task force suggested that IRBs might want to encourage: 1) the development of a Federal policy on minimal-risk research that could guide State efforts to draft legislation regarding surrogate decisionmaking for research participation by incompetent individuals, and 2) the establishment of a national research ethics advisory body with authority to endorse or prohibit specific research protocols. Endorsement would be evidence of compliance with Federal regulations. The suggested guidelines were supplied by the task force with these aims: ,. 1) to express a preference for research with patients who are competent or who are otherwise relatively less vulnerable to potential abuse; 2) to identify individuals who are favorably inclined to participation in research and to provide mechanisms for their participation now and in the future, subject to necessary safeguards; 3) to assure that all research protocols involving (Alzheimer) patient-subjects have adequate mechanisms to assess competence, assure the adequacy of the consent process, and assure the continued ability of the subjects to decline to participate or withdraw; 4) to indicate special considerations in and limitations on research involving patients who are not capable of granting legally effective consent on their own behalf (43). Ten guidelines on these issues were drawn up. Among other recommendations, the task force suggested that IRBs be particularly sensitive to protocol design and methodology involving subjects who lack capacity to give consent, who do not object to consent, or who have not given prior consent through a durable power of attorney or otherwise. Research involving such individuals may be roughly classified into three different groups: 1. nonintrusive, noninvasive data collection and observation, and invasive research posing no more than minimal risk to subjects; 2. invasive research posing more than minima} risk that offers some realistic possibility of direct therapeutic benefit to the subject; and 3. invasive research posing more than minimal risk that does not offer some realistic prospect of direct therapeutic benefit to the subject. The task force suggested that, where applicable, subjects should be selected in the following order of preference: 1. 2. 3. 4. noninstitutionalized, still-competent individuals with Alzheimers disease who decide whether or not to participate; noninstitutionalized individuals with Alzheimers disease and with impaired competence who had earlier competently expressed, and still express, a willingness to participate in research; noninstitutionalized individuals with Alzheimers disease and with impaired competence who express a current willingness, with family support, to participate in research; and other noninstitutionalized individuals with Alzheimers disease and with impaired competence who express a current willingness to participate in research. The task force maintained that consent forms and other appropriate IRB safeguards be required for subjects with Alzheimers disease who have the capacity to provide or refuse legally effective consent. Long-range protocols should be developed in which valid subject consent could be obtained during the early stages of dementia. For individuals with a dementing illness, greater scrutiny of the subjects capacity to provide consent should occur. Other factors to consider include the risks posed by specific research, the likelihood that the subject is to receive direct benefits, and the complexity of the research, The task force also 63-218 0 87 7 QL : 3

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188 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias recommended that IRBs ensure that research protocols include a mechanism to designate a legally authorized representative or surrogate decisionISSUES AN D It has been said that laws function best when they are the end product of social consensus (30). Laws that precede consensus on divisive issues often act as lightning rods for continued unrest and controversy. Furthermore, action by the Federal Government that is later overturned by the courts only serves to confuse the public, and put into limbo the lives of directly affected individuals. Consensus on the issues raised by surrogate decisionmakers is slowly forming in the courts and State legislatures. Allowing this consensus to mature is perhaps the only way to ensure lasting constituent support and agreement on these issues. Some of the issues presented here may be more quickly and easily resolved than others, and might be safely legislated upon at this time; others might more wisely be left to further public debate. Most options detailed in this section could be accomplished by State, as opposed to Federal legislation, except where noted. ISSUE 1: Should a standard method of determining competence to make health care decisions be adopted, or institutional checks on such determinations be introduced? Option 1: People could lose their right to selfdetermination upon diagnosis of a dementing disorder. Option 2: Let physicians decide whether a patient with a dementing disorder is competent to make decisions. Option 3: Base the determination of competence on a patient's demonstrated understanding of a treatment and its consequences and of a refusal of treatment and its consequences. Option 4: Consider competence to be decisionrelative. maker when a subject lacks the capacity to provide valid consent to participate in research, but does not object to participating. OPTION S Option 5: Require court hearings for each person whose competence to make health care decisions is questioned. Option 6: Form institutional committees to review the competence of a patient if competence is questionable or there is disagreement between physician and patient. Option 7: Rely on a standing body of physicians, nurses, social workers, lawyers, mediators, laypeople, and others to act as an informal court, making competency determinations on a community or regional basis. Option 8: Encourage health care facilities, such as hospitals and nursing homes, to develop and announce institutional policies and procedures for determining competence. Option 1 would obliterate the rights of individuals who are diagnosed early in their diseases, yet permit self determination for other individuals who have long since become incompetent but never had the benefit of diagnosis. Letting physicians determine competence (option 2) is, for the most part, the status quo. One of the difficulties here is that a physicians religious, cultural, and moral beliefs and preferences may conflict with those of a patient. Often physicians deem patients competent when they consent to treatment, but incompetent when they refuse to continue the same treatment at a later date (32). This option also denies the patient due process of law before stripping him or her of decisionmaking powers. Physician assessment of a patient should not be disregarded as an option, however. Frequently the physician (or other professional caretaker) is the most objective member of the patient-physician-

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Ch. 5Making Decisions for Those With Dementia l 189 family triangle, and has motives that are less clouded by grief, trauma, or guilt. The physician is likely to have the most experience in assessing individuals with dementia. Option 2 does not incur the expense or time of a court competency hearing. If family members and other professional caretakers agree that the patient is incompetent, this approach generally is suitable. Option 3 focuses on a patients understanding of the consequences of a health care decision, not on whether the person agrees or disagrees with the physician or with family members. Safeguards might be instituted to ensure that adequate information to aid an informed consent or refusal is given to each patient prior to a treatment decision. A patients comprehension of a proposed treatment is crucial to a competent decision, yet physicians have not always given sufficient time and effort to explaining treatments and consequences clearly. Devising adequate informational safeguards (e.g., peer review) would be challenging, but could result in better informed decisions. The more important the decision and its ramifications, the more careful should be the assessment of competence a point acknowledged by option 4, If the decision and its ramifications are not life-threatening or particularly vital, the patients preferences might be more readily upheld. Guidelines for evaluating the difficulty of decisions in relation to a patient decisionmaking capacity could be created either by government or individual health care facilities. Devising and implementing such guidelines would take effort, but the advantage of option 4 is that such a system protects an individuals autonomy for as long as possible while still safeguarding health and safety. Option 5, although it might safeguard the rights of some patients, is time-consuming, expensive, and traumatic for patients, family, and physicians. The judicial process often proceeds too slowly for medical needs. Such a proposal could also unduly burden the courts. However, if the judicial system could be streamlined to review competence effectively and efficiently, then a mandatory court hearing when a persons competence is questioned might present the enormous advantage of assuring each person the benefit of due process before losing the right to make decisions. Institutional review committeesoption 6 might be similar to the institutional ethics committees discussed earlier. Organization and operational questions regarding IECs, however, also would apply to this sort of competency review. The advantage of such a committee would be that the patient right to self-determination might be better protected. A committee with members having diverse beliefs and values might make the decision regarding a patients competence a more neutral and balanced one. The disadvantage of option 7 lies in the unknown composition and funding of a standing review group, although many health care facilities, insurance companies, and other institutions might agree to fund and staff it. There also maybe questions regarding the groups expertise, methodology, and authority. The advantages include the independence of the groups members. Moreover, the assessment resources offered by such a group might be greater than those of an individual physician, hospital, or nursing home. A standing review group might also be an appropriate mechanism for determining competence to make nonmedical (e.g., financial) decisions. The group might be used for all competence determinations, or only when competence is questionable or in dispute. It might also recommend judicial action when unable to determine an acceptable resolution itself. Option 8 could include developing a list of who is responsible for determining competence, effective safeguards against error and abuse, and an indication of when court intervention is appropriate. Many facilities already have such policies but either do not formally advise prospective patients of them or do not adhere to them. There is also a possible conflict of interest if health care facilities not only determine competence but also prescribe care. The advantage of option 8 is that patients and families could act as consumers judging the stated policies and procedures of each facility and choosing the one most closely aligned with their own preferences. More importantly, patients and families have a right to know and understand the policies of their health care facility. Armed with that knowledge, the determination of competence for a given patient might be

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190 Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias demystified, and patients and families might be better able to make informed consents or refusals. ISSUE 2: Should a uniform definition of terminal illness be adopted? Option 1: Refrain from adopting a uniform definition of terminal illness. Option 2: Define terminal illness as the few days or weeks when death is imminent. Option 3: Define terminal illness as occurring at some stage earlier than a few weeks preceding imminent death. Option 4: Amend living will statutes to apply to health care decisions at any time, not solely at the point defined as (terminal illness. The disadvantages of option 1, which is the status quo, have been discussed previously. The advantage of doing nothing now is that a societal consensus on this issue may form which law could then be enacted to embody. Option 2 would give physicians, rather than patients, almost exclusive right to make treatment decisions until the very end of life. Further, it would strip most decisionmaking powers from surrogates and directive powers from advance directives. A broader definition-option 3would allow patients wishing to do so to execute advance directives to ensure withholding or withdrawing of treatment. It also would allow surrogates to act on the desires of the patient at an earlier stage. Option 4 would allow incompetent patients who previously executed clearly defined directives or legally appointed a surrogate to have their medical treatment desires met through the course of their illness. Living wills, family consent provisions, and durable powers of attorney mainly revolve around critical care decisions. Many statutes pertaining to these mechanisms, including living will statutes, depend on the diagnosis of a patient as terminally ill. With no standard definition of that term, confusion surrounds the application of these legal devices. ISSUE 3: Could the identification of surrogate decisionmakers be encouraged? Option 1: Require people to identify a surrogate decisionmaker when their tax status changes, or periodically. Option 2: Give tax credits or deductions for the identification of a surrogate, or penalize people who have not identified a surrogate by a certain age. Option 3: Require people claiming deductions for home or day care of their parents or spouses to document that a surrogate decisionmaker has been identified. Option 4: Make enrollment into social service, health, and income maintenance programs contingent on identification of a surrogate, Option 5: Encourage hospitals, nursing homes, other health care facilities, and board and care homes to institute procedures requiring or identifying surrogates of all entering persons. Option 6: Expand the family consent provisions in State law. Option 7: Encourage States to define precisely what powers are accorded surrogate decisionmakers. Option 8: Impose sanctions against caretakers, facilities, or even family members who refuse to follow a surrogate decisions. People might be required to appoint a surrogate decisionmaker for health and estate purposes when their tax status changes from employed to retired, and to document that appointment with the submission of their taxes (option 1). One disadvantage of this method lies in relying on, and further burdening, the countrys tax collection system. It also does not account for individuals who become incompetent before they retire, those who do not retire, and those for whom emergency decisions must be made. The advantage is that more people would designate, and communicate their wishes to, a surrogate while still competent. People could be required to appoint a surrogate or surrogates every 10 years, through forms filed

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Ch. 5Making Decisions for Those With Dementia 191 with their taxes, voter registration, health insurance, or doctor. However, that approach excludes individuals who do not pay taxes, vote, or purchase health insurance. It also excludes those who never see a doctor or for whom emergency decisions must be made. The disadvantages of option 2giving tax credits or deductionsinclude the necessity for new tax laws, as well as the potential loss of tax revenue. Emergencies might also preclude the ability of a health care facility to find out the identity of the surrogate. People claiming deductions for home or day care could be required to document that a surrogate has been identified (option 3). However, many individuals are already incompetent by the time they require tax-deductible care, so they would be unable to designate surrogates themselves. Other problems with option 3 include the increased burden on the tax review process, and the situation of people who do not have related caretakers, Case managers might assist in or require the identification of a surrogate. If enrollment is not contingent on the identification of a surrogate (option 4) it might at least trigger the encouragement or counseling of the family on how to identify a surrogate. Again, however, by the time some assistance programs are used, many persons already are incompetent. Option 4 also increases the burden of reviewing eligibility for these programs. The disadvantage of option 5 is that many board and care homes are unregulated. Also, health care facilities are not currently equipped to help identify surrogates. Family consent provisions, creating an automatic surrogate decisionmaker for an incompetent individual are frequently tied to advance directives such as living wills and therefore may not be used until the individual is terminally ill. Under option 6, therefore, given the confusion over the definition of terminal illness, a family member may not be able to act as a surrogate until the last few days before an individuals death. Option 7 would require States to tackle some possibly contentious issues head on, and legislators decisions would likely be made without benefit of community consensus. The advantage of this option is that, once powers were clearly determined, patients, families, surrogates, and administrators of health care facilities would have greater guidance in protecting the rights of an incompetent patient. Uniform guidelines for surrogate health care decisions could be adopted, making it easier for surrogates to act across State lines. The advantage of option 8 is that treatment disputes could be circumvented, and surrogates with some evidence of what individuals would have wanted could carry out their wishes. However, surrogates, if appointed by the court or even by the individual, may not know the values and preferences of the individual. Physicians and health care facilities not wishing to comply with the health care decisions of a surrogate could be compelled to refer the surrogate to alternate physicians or facilities that would comply. Surrogates could be given assistance in advocating an individuals wishes, and the occasionally combative situation when a physician disagrees about a surrogates decision would be alleviated. Surrogate decisionmakers area living extension of a persons right to self-determination. The greater awareness of surrogatesthe need to appoint them, and the need to use themhas encouraged individuals to think about how they want to be medically treated. If people take the time to think about these issues and communicate their desires, not only is their own treatment course clearer, but society also gains by moving toward an informed consensus on how to treat persons with dementia. Numerous methods are already in place for identifying surrogate decisionmakers. Existing methods are adequate; what appears inadequate is the use of those methods. Therefore, the challenge lies less in identifying surrogates than in stimulating and promoting their use. The increasing number of elderly individuals with dementia makes the early identification and timely use of surrogates vital. However, steps must be taken to lessen the cost, ignorance, and fear associated with surrogate decisionmaking. Lawyers (and other individuals) formally assisting in

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192 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias this process need sufficient, current information, as does the general public. A number of these options might be used in concert, creating multiple opportunities for the early identification of a surrogate, and requiringafter a grace period, and with grandfather clauses that individuals who have not complied seek a court order for treatment to be withheld or withdrawn. ISSUE 4: Should the use of advance directives be stimulated? Option 1: Use advance directives solely as a guide to what treatment an individual would have wanted. Option 2: Require people to execute advance directives when their tax statu s changes, or periodically. Option 3: Introduce uniform State statutes on advance directives. Option 4: Require attorneys who prepare advance health care directives to have specific training in this field. Option 5: Permit nonlawyers who have received special training to prepare advance directives. Option 6: Make compliance with advance directives mandatory, with punishment for failure to follow them. Under option 1, compliance with advance directives would not be mandatory, and the extent to which one would be followed would be determined by the aggressiveness of the physician or the family if the directive were disputed. That is basically the status quo. The main disadvantage of the status quo is the individuals uncertainty about whether his or her wishes will be respected. The advantage is that a societal consensus may continue to form in support of making compliance with advance directives mandatory. Option 2, requiring people to prepare and sign advance directives, has the same advantages and disadvantages mentioned earlier with regard to identifying surrogate decisionmaking (issue 3, above). A percentage of people would not be reached through option 2. States now have widely different statutes and interpretations. While option 3 might force States to legislate in advance of a clear-cut societal consensus, one advantage would be that advance directives executed in one State could be respected in another. Also, the publics participation in the legislative process leading to adoption of uniform statutes might go a long way toward the formation of a societal consensus. Attorneys specifically trained to draft and execute advance directives (option 4) are likely to do so in a way that would be less open to subsequent medical, legal, or familial arguments. Again, a clarification of the decisionmaking powers of individuals appointed to carry out advance directives would be enormously helpful in knowing how to prepare such directives. Additionally, advance directives could be prepared by other persons specifically educated in this field (option 5). Social workers, nurses, physicians, the staff of senior citizens centers, and others might be empowered to execute these directives after receiving appropriate education. While nonlawyers are not trained to craft legal documents, if living wills are viewed as a guide, as opposed to a mandate, then nonlegal personnel might be able, with training, to prepare them adequately. By allowing someone other than a lawyer to draft advance directives, they might become less daunting, more accessible, and less expensive for the average person. One problem with option 6 is that many advance directives lack enough specificity regarding patient preferences and therefore are difficult to follow or maybe subject to a variety of interpretations. The advantage of making them mandatory is a greater likelihood that the autonomy of individuals would be respected after their own incompetence. The stress and anxiety of the dying process might be alleviated if individuals knew they would not be treated in a personally offensive way. Physicians and health care facilities not wishing to comply with an individuals advance directive could be compelled to refer family members to alternate physicians or care facilities that would comply. They could also be required to assist family members in transferring patients with advance directives to those alternative caregivers. As noted,

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Ch. 5Making Decisions for Those With Dementia 193 many States and care facilities already have a policy on transfer, but do not follow it. Option 6 would give families assistance in carrying out a family members instructions, and it would ease the occasional disagreement between physicians and families over adherence to an advance directive. ISSUE 5: Should standard procedures for resolving disputes about treatment be adopted? Option 1: Use an Institutional Ethics Committee as a resolving body. Option 2: Employ trained mediators to settle treatment disputes. Option 3: Establish a standing body of physicians, nurses, social workers, ethicists, lawyers, laypeople, and others to act as an Option 4: Option 5: alternative to court resolution on a community or regional basis. Require health care facilities to assist the families in transferring the patient to a doctor or facility more sympathetic to their wishes in cases of unresolvable dispute. Require family members who disagree among themselves to sign documents releasing the facility and physician from liability. The advantage of option 1, reliance on an IEC, is that it creates an alternative arena in which cases might be decided without resort to the courts. IECs might allow family members and physicians who are unhappy with a treatment decision to air their concerns outside, rather than inside, a courtroom. Mediators (option Z ) could suggest alternate solutions that might be acceptable to both physician and family. Such mediators would need to be medically educated in order to understand the individuals prognosis, whether the physician has operated in the spirit of informed consent, and if all options had already been examined by physician and family. Operational and funding issues for this process would need to be worked out, but mediators offer the promise of resolving problems short of costly and time-consuming legal battles. The disadvantages of option 3, as with the option of using such a group to determine patients competence (issue 1, option 7, above), lie in the unknown composition and funding. Again, health care facilities, insurance companies, and other institutions might agree to fund and staff a group to resolve disputes, particularly as an alternative to court involvement. The advantages of such a standing body are the groups objectivity in arriving at alternate solutions, and its ability to recommend that certain cases go to the courts for resolution. Option 4 will not help resolve disputes if no sympathetic alternative provider can be found or when the dispute is between family members, but it would allow many families and physicians to resolve their disputes peacefully. Physicians and facilities may not want to raise the suggestion of a possible lawsuit, but a release from liability (option 5) might free the physician to suggest treatment based on medical decisions about the individual rather than on the physicians fear of a lawsuit. Clearer, more decisive, and bolder treatment decisions might result from a reemphasis on defensive medicine. Treatment disputes sometimes arise between physicians and family members. Most of these disputes can be avoided. If a surrogate decisionmaker with clearly defined powers has been appointed in advance of an individuals incompetence, or if a clear directive has been executed, then many treatment disputes will be prevented. Until advance directives and surrogate decisionmaking powers are more clearly defined and widely used, however, methods to resolve treatment disputes are needed. ISSUE 6: Should there be a distinction be tween unwanted treatment that sustains life and the unwanted cessation of such treatment? Option 1: Consider unwanted treatment that prolongs lifeless objectionable than the unwanted cessation or withholding of treatment that would prolong life. Option 2: Consider unwanted treatment that prolongs life just as objectionable as the

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194 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias unwanted cessation of treatment that prolongs life. Option 1 errs on the side of life-sustaining treatment, Yet unwanted prolongation of life may be seen as just as objectionable as the unwanted cessation of life-sustaining treatment. Under option 2, physicians would be less inclined to practice defensive medicine, as they could be held liable for refusing to withdraw or withhold unwanted treatment. Legal clarification of the status of unwanted treatment would be useful. As noted, once advance directive and surrogate decisionmaking powers are more clearly delineated, many existing sources of tension would be eradicated. ISSUE 7: Should States include the decision to withhold or withdraw medical treatment in advance directives or in powers given to surrogate decisionmakers? Option 1: States could decide not to act, leaving resolution of disputes regarding the withholding and withdrawing of treatment up to the courts. Option 2: Direct that critical health care decisions fall outside the purview of surrogate decisionmakers or advance directives. Option 3: Grant surrogates and those following advance directives clear power to require the withholding or withdrawing of treatment. Option 1, the current situation, has the disadvantages of forcing many more surrogates and family members through the trauma of court involvement, and of encouraging unwanted treatment of many individuals. The advantage of this option is that it allows States to await formation of a societal consensus. The advantage of option 2 is that an extremely small percentage of incompetent individuals with unscrupulous surrogates would be protected. The disadvantages include the obliteration of individuals right to determine critical health care treatment for themselves or to delegate that authority to a surrogate. Granting surrogates and those following advance directives the power to withhold or withdraw treatment (option 3) might allow unscrupulous surrogates to make decisions only for their own motives, but it would also allow most individual preferences to be more easily respected, and might circumvent disputes between doctors, family members, and the patient. Once again, a clarification of powers in the context of statutes on living wills, family consent, guardianship, conservatorship, durable powers of attorney, and durable powers of attorney for health care, is one of the best ways to stem the confusion and combativeness surrounding the issue of withholding or withdrawing life-sustaining treatment. ISSUE 8: Should special precautions be taken when persons with a dementing illness are involved in biomedical research? Option 1: Adopt the guidelines suggested in 1985 by the National Institute on Aging Task Force. Option Z : Encourage the use of special informed consent forms or interview procedures when persons with dementia are involved in research. Researchers and institutions receiving funding from the National Institutes of Health could be required to abide by the 10 provisions of the National Institute on Aging Task Force guidelines. Among other protections, option 1 would ensure that research protocols include a mechanism for designating a legally authorized surrogate decisionmaker when a patient-subject lacks decisionmaking capacity but does not object to participation in the research. Forms for elderly persons should have short, clear sentences, large print, and simple explanations. Option 2 could entail having the forms critiqued by elderly consultants rather than by clinical researchers before they are given to the proposed patient-subjects. Researchers also could revise the traditional one-on-one, single interview process of obtaining an informed consent. Instead, they could leave a copy of the informed consent

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Ch. 5Making Decisions for Those With Dementia l 195 form with potential subjects and let them study ably justifies the continued use of incompetent it at leisure and in the security of their own resipersons as research subjects in attempts to find dences; encourage friends and relatives of the ina cure or prevention. However, these vulnerable dividual to be present during the interviews; use individuals must be protected from experimeninformational aids, such as tape recorders, slides, tation that is unsafe, unnecessary, or irrelevant. or sketches, to further explain the research; and One approach is to encourage individuals to give cosign the form with the patient-subject as an affirmation that the research is an ethically invested and mutual service. The enormous impact that dementing diseases have on individuals, families, and society probtheir informed consent or refusal to research participation prior to becoming incompetent. As a study changes, surrogates should constantly reevaluate whether an incompetent person would still wish to take part in the study. CHAPTER 5 REFERENCE S 1. Annas, G.J., Boston University, School of Medicine, personal communication, January 1986 and Mar. 31, 1986. 2. Barber and Necfjl v. Superior Court, 195 Cal Rptr. 484, 147 Cal App 3d 1054, 1983. 3. Beck, C. M., and Phillips, L. R., The Unseen Abuse: Why Financial Maltreatment of the Elderly Goes Unrecognized, Journal of Gerontological Nursing 10(12):26-30, 1984. 4. Bedell, S. E., and Delbanco, T. L., Choices About Cardiopulmonary Resuscitation in the Hospital, New EngJand Journal of Medicine 310:1089-1093, 1984. 5. Bellotti, F. X., Investigating and Prosecuting Patient Abuse and Neglect in Nursing Homes: The Massachusetts Perspective, Attorney Generals Office, Medicaid Fraud Control Unit, Commonwealth of Massachusetts, February 1985. 6. Billings, A.J., Comfort Measures for the Terminally Ill: Is Dehydration Painful? Journal of the Aznerican Geriatrics Society 33:808-810, 1985. 7. Brackel, S.J., and Rock, R. S., The Mentally Disabled and the Law (Chicago, IL: University of Chicago Press, 1971). 8. Brackel, S.J., Parry, J., and Weiner, B. A., The Mentall~v Disabled and the Law, 3rd ed. (Chicago, IL: American Bar Foundation, 1985). 9. Brophuv v. New England Sinai Hospital, Inc., Massachusetts State Supreme Court, Sept. 11, 1986. 10. Brown, B., University of Detroit Law School, personal communication, May 3, 1985. 11. Buchanan, A., Gilfix, M., and Brock, D., Surrogate Decisionmaking for Elderly Individuals Who Are Incompetent or of Questionable Competence, contract report prepared for the Office of Technology Assessment, U.S. Congress, 1986. 12. Canterbury v. Spence, 464 F.2d 772, D.C. Circuit 1972. 13. Cohen, E. S., Autonomy and Paternalism: Two Goals in Conflict, Law, Medicine & Health Care 13(4):145-150, September 1985. 14. Cohen, E. S., Mace, N., and Myers, T. S., consultants and staff, Office of Technology Assessment, in collaboration, 1985. 15. Collin, F. J., Jr., Lombard, J., Moses, A., et al., Drafting a Durable Power of Attorneey: A Systems Approach (Lexington, SC: R.P.W. Publishing, 1984). 16. Drane, J. F., Competency To Give an Informed Consent: A Model for Making Clinical Assessments, Journal of the American Medical Association 252:925-927, 1984. 17. Drane, J. F., (The Many Faces of Competency, Hastings Center Report 15(2):17-21, 1985. 18. Dresser, R., When Patients Resist Feeding: Medical, Ethical, and Legal Considerations, Journal of the American Geriatrics Society 33:790-794, 1985. 19. Dudowitz, N,, National Senior Citizens Law Center, California, personal communications, Oct. 21, 1985, and Apr. 21, 1986. 20. Dyer, A. R., Assessment of Competence To Give Informed Consent, AZzheimerk DementiaDiJemmas in Clinical Research, V.J. Melnick and N.N. Dubler (eds.) (Clifton, NJ: Humana Press, 1985). 21. Evans, A. L., and Brody, B. A., The Do Not Resuscitate Order in Teaching Hospitals, Journal of the American Medical Association 235:2236-2239, 1985. 22. Gilfix, M., Gilfix Associates, Palo Alto, CA, personal communication, December 1985. 23. Gilfix, M., Gilfix Associates, Palo Alto, CA, personal papers, 1985. 24. Gilfix, M., Legal Issues and Alzheimers Disease, testimony prepared for the California State Task Force on Alzheimers Disease, March 1986. 25. Hynes, C.J., (Protecting Patients Personal Funds: Failures and Needed Improvements [A Report on the Assets of Patients in Residential Health Care

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l% l Losing a Million Minds: confronting the Tragedy of A/zheimers Disease and Other Dementias Facilities], Office of the Attorney General Investigating Nursing Homes, Health and Social Services, May 1977. 26. Hynes, C.J., Private Proprietary Homes for Adults: Their Administration, Management, Control, Operation, Supervision, Funding & Quality of Care [A Second Investigative Report], Office of the Attorney General Investigating Nursing Homes, Health and Social Services, Mar. 31, 1979. 27. In re Quinlan, 70 NJ 10, 355 A.2d 647, cert. denied, 429 US 922, 1976. 28. Jordan v. Heckler, United States District Court for the Western District of Oklahoma, CIV-79-994-W, Jan, 18, 1985. 29. Jordan v. Schweiker, United States District Court for the Western District of Oklahoma, CIV-79-994W, Mar. 17, 1983. 30. Kapp, M.B., and Lo, B., Legal Perceptions and Medical Decisionmaking, contract report prepared for the Office of Technology Assessment, U.S. Congress, 1986. 31. Kjervik, D., American Association of Colleges of Nursing, persona] communication, Apr. 26, 1985. 32. Lane v. Candura, 376 NE2d, 1232, Mass. App. 1978. 33. Leach v. Shapiro, Court of Appeals of Ohio, Summit County, 469 N.E.2d 1047 (Ohio App. 1984), May 2, 1984, 34. Levine, C., Hospital Ethics Committees: A Guarded Prognosis, Hastings Center Report 22-27, June 1977. 35. Levine, C., (Questions and (Some Very Tentative) Answers About Hospital Ethics Committees, Hastings Center Report 14 (Towson, MD, personal communication, May 3, 1985). 36. Lew, J., The Health Care Decision-Making Process: Selected Legal Issues, speech delivered to the California State Task Force on Alzheimer Disease, March 1986. 37. Lo, B., Saika, G., and Strull, W., ( Do Not Resusci38 39 40 tate Decisions: A Prospective Study at 3 Teaching Hospitals, Archives of Internal Medicine 145:11151117, 1985. Lombard, J.J., Jr., and Emmert, W .W., The Durable Power of Attorney: Underused Tool, The National Law Journal 15-19, Oct. 29, 1984. Mace, N. L., consultant in gerontolo~, Towson, MD, personal communication, May 3, 1985. Mace, N. L., and Rabins, P. V., The 36 Hour Day: A Family Guide To Caring for Persons With Alzheimerb Disease, Related Dementing Illnesses, and Memory Loss in Later Life (Baltimore, MD: Johns Hopkins University Press, 1981). 41. McKay, J. B., Protective Services Give Elders More Autonomy) Generations 8(3), Spring 1984. 42. Melnick, V.J., Alzheimers Dementia: Dilemmas in Clinical Research, V.J. Melnick and N.N. Dubler (eds.) (Clifton, NJ: Humana Press, 1985). 43. Melnick, V.J., Dubler, N. N., and Weisbard, A., Clinical Research in Senile Dementia of the Alzheimer Type: Suggested Guidelines Addressing the Ethical and Legal Issues, Journal of the American Geriatrics Society 32:531-536, 1984. 44. Michels, K. A., American Nurses Association, personal communication, April 26, 1985. 45. Mishkin, B., ( Making Decisions for the Terminally Ill, Business and Health, June 1985, pp. 13-16 46. Mishkin, B., Giving Someone the Power To Choose Your Medical Care, Washington Post Health Section, Aug. 7, 1985. 47. Mishkin, B., A Matter of Choice: How To Maintain Control Over Health Care Decisions, Senate Special Committee on Aging, 1986. 48. Nathanson, P., Future Trends in Aging & the Law, Generations 8(3):7-9, Spring 1984. 49. Nathanson, P., Director, Institute of Public Law, Albuquerque, NM, personal communication, May 3, 1985. 50, Nolan, B. S., Functional Evaluation of the Elderly in Guardianship Proceedings, Law, Medicine & Health Care 12:5, 210-218, October 1984. 51. Otten, A. L., New Wills Allow People To Reject Prolonging of Life in Fatal Illness, Wall Street Journal, July 2, 1985. 52. Otten, A. L., Research Into Alzheimers Disease Is Frustrated by Ethical Dilemma, Wall Street Journal, May 3, 1985. 53. Owens, P., When the Trustee Gets SS1 Check, Newsday, Jan. 9, 1984. 54. Pratt v. Davis, 118111. App. 161, 1905 (affd 11]. 30, 79 N.E. 562, 1905) 55. Presidents Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Making Health Care Decisions, Vol. One: Report (Washington, DC: U.S. Government Printing Office, 1982). 56. Presidents Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Making Health Care Decisions, Vol. Two; Appendices (Washington, DC: U.S. Government Printing Office, 1982). 57. Presidents Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Deciding To Forgo Life-Sustaining Treatment (Washington, DC: U.S. Government Printing Office, 1983). 58. Probate Code 5-103, 8 Uniform Law Annafs 437, West Supplement 1983. 59. Randal, J., Are Ethics Committees Alive and Well? Hastings Center Report 13(6):10-12, 1983. 60. Regan. .J.J., Process and Context: Hidden Factors

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Ch. 5Making Decisions for Those With Dementia l 197 61. 62. 63. 64. 65 66, in Health Care Decisions for the Elderly, La\v, Medicine & Heahh Care 13(4):151-152, September 1985. Robertson, J., Address to American Society for Law and Medicine, Concern for Dying Conference, Washington, DC, April 1983. Social Security Disability Amendment of 1984, Calendar No. 899, Report 98-466, 98th Cong., 2d sess. State Health Legislation Report, American Medical Association Department of State Legislation, vol. 14, No. 3, August 1986. Suber, D.G., and Tabor, W .J., (Withholding of LifeSustaining Treatment From the Terminally 111, Incompetent Patient: Who Decides? [Part 11, Journal of the American Medical Association 248:22502251, 1982. Suber, D. G., and Tabor, ltJ.J., Withholding of LifeSustaining Treatment From the Terminally Ill, Incompetent Patient: Who Decides? [Part 2], Journal of the American Aledical Association 248:24312432, 1982, Superintendent of BeIchertown Sta te School v. Saikewicz, 370 h.IZ. 2d 417, Massachusetts Superior Judicial Court, 1977. 67. 68. Uniform Law Commissioners Model Health Care Consent Act, 9 Uniform LawAnnak 332, West Supplement 1984. U.S. Department of Health and Human Services, Report of the Secretary as Required by Section 16, Public Law 98-460, September 1985. 69. U.S. Department of Health and Human Services, Office of the Inspector General, Revised Nursing Home Inspection Guide; Health Care Provider Fraud: Technical Assistance Services, Washington, DC, March 1984. 70. US. Department of Heahh and Human Services, 71 72 Office of the Inspector General, Supplemental Securit-v Income Fraud: Technical Assistance Manual, Washington, DC, November 1983. U.S. Department of Health and Human Services, Office of the Inspector General, Board and Care Homes, Washington, DC, April 1982. Veatch, R. M., Hospital Ethics Committees: Is There a Role? Hastings Center Report 7(3):22-27, 1977. 73. Wilson, D., attorney to Leach, personal communication, Apr. 29, 1986. 74. Witt, S., Disabled Easily Bilked of Support Checks, The Tulsa Tribune Mar. 20, 1984.

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Chapter 6 Long-Term Care Services and Settings: An Introduction

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CONTENT S Page What Services Are Needed for Persons With Dementia? ., .................201 The Current Role of the Federal Government in Long-Term Care ...........203 Conceptual Issues in Long-Term Care of Persons With Dementia . ......206 Long-Term Care Settings and Services . . . . . . . ... ....2II State Mental Hospitals . . . . . . . ................212 Nursing Homes . . . . . . . ........................214 Board and Care Facilities . . . . . . ....................219 Home Care.... . . . . . . . ......................222 Adult Day Care Centers . . . . . . . .................228 Community Mental Health Centers.. . . . . . . . .. ...230 Service Delivery Systems . . . . . . . . . ...........231 Chapter p references. . . . . . . . . ................233 Tables Table No. Page 6-1. 6-2. 6-3. Care Services for Persons With Dementia ............................20 2 Major Federal Programs That Fund Long-Term Care Services ...........204 Residents of Mental Hospitals and Homes for the Aged Who Were 65 or Older: 1950, 1960, 1970, and 1980 ..........:.. .................21 3 Figur e Figure No. Page 6-l. Nursing Home Residents With Chronic Brain Syndrome or Senility as Assessed by Nurse Respondents, by Age, United States, 1977.............215

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Chapter 6 Long-Term Care Services and Settings: An Introduction The availability, appropriateness, quality, and care and home care services tailored to their cost of long-term care services for persons with needs. Other chapters consider aspects of longdementia are major concerns for their families, term care that are most directly affected by Fedfor health care and social service providers, and era] legislation and regulations, and thus most for Federal, State, and local government. Many likely to be addressed by Congress: residents of nursing homes and board and care facilities and many recipients of long-term care l services at home are persons with dementia. Yet l families complain that long-term care services are frequently not available for such persons or, when available, are of poor quality, inappropriate for l the needs of the person with dementia, and/or too expensive (122). Many health care and social service providers agree. l Government concerns about long-term care for persons with dementia arise from the complaints l and urgent requests for help from families and patient assessment and eligibility for publicly funded services (ch. 8); the training of health care and social service providers who treat individuals with dementia (ch. 9); quality assurance procedures for nursing homes, board and care facilities, and home care services [ch. 10); Medicare and Medicaid coverage of long-term care (ch. 11); and overall financing of services for persons with dementia (ch. 12). others who care for them. On the other hand, the current and potential cost of providing appropriate long-term care services for the growing number of persons with dementia in this country is a grave concern. The congressional letters of request for this OTA assessment reflect both concerns. This and the following six chapters take up these concerns. This chapter presents an overview of existing long-term care services and settings and the Federal Governments current role in longterm care. Chapter 7 discusses the relatively recent but growing phenomenon of long-term care services designed specifically for people with dementia, including special care units in nursing homes and board and care facilities and adult day Although an increasing number of long-term care facilities and agencies are providing services designed specifically for individuals with dementia, OTA estimates that fewer than 2 percent of such persons are receiving special services. The vast majority who receive any formal long-term care services are cared for by facilities and agencies that provide essentially the same services for everyone. Thus, the description of services and care settings in this chapter reflects what is currently available to most people with dementia. It also provides a basis for understanding why families and health care and social service providers are complaining to Congress and why many of them are so enthusiastic about the development of special services for these patients. WHAT SERVICES ARE NEEDED FOR PERSONS WITH DEMENTIA ? services for people with dementia include a wide servicesfor example, physician, legal, and denvariety of medical, social, rehabilitative, and letal servicesthey are needed intermittently over gal services (see table 6-l). While some of those the prolonged period of illness that characterizes listed are not usually considered long-term care many dementing conditions. 201

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202 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias Table 6-1.Care Services for Persons With Dementia Physician services: Diagnosis and ongoing medical care, including prescribing medications and treating intercurrent illness. Patient assessment: Evaluation of the individuals physical, mental, and emotional status, behavior, and social supports. Skilled nursing: Medically oriented care provided by a licensed nurse, including monitoring acute and unstable medical conditions; assessing care needs; supervising medications, tube and intravenous feeding, and personal care services; and treating bed sores and other conditions. Physical therapy Rehabilitative treatment provided by a physical therapist. Occupational therapy: Treatment to improve functional abilities; provided by an occupational therapist. Speech therapy: Treatment to improve or restore speech; provided by a speech therapist. Persona/ care: Assistance with basic self-care activities such as bathing, dressing, getting out of bed, eating, and using the bathroom. Home hea/th aide services: Assistance with health-related tasks, such as medications, exercises, and personaI care. Homemaker services: Household services, such as cooking, cleaning, laundry, and shopping, and escort service to accompany patients to medical appointments and elsewhere. Chore services: Household repairs, yard work, and errands. Supervision: Monitoring an individuals whereabouts to ensure his or her safety. Paid companion/sitter An individual who comes to the home to provide supervision, personal care, and socialization during the absence of the primary caregiver. Congregate rneals: Meals provided in a group setting for people who may benefit both from the nutritionally sound meal and from social, educational, and recreational services provided at the setting. Home-de/ivered mea/s: Meals delivered to the home for individuals who are unable to shop or cook for themselves. SOURCE: Office of Technology Assessment, 19S7. Some of the services are defined primarily in terms of who provides them (e.g., physician and dental services, and physical, occupational, and speech therapy). Others are defined by the government programs that pay for them (e.g., skilled nursing and home health aide services paid for by Medicaid and Medicare); by the needs of recipients (e.g., supervision and paid companion); or by their intent (e.g., respite care and hospice services). Because they are defined in different ways, they overlap conceptually. For example, adult day care, respite care, and hospice services each include many of the others, and adult day care can be a form of respite care. people with dementing illnesses live at home or in nursing homes, in board and care facilities, or, to a lesser extent, in State mental hospitals. Most of the services listed in table 6-1 can be provided Telephone reassurance: Regular telephone calls to individuals who are isolated and often homebound. Personal emergency response systems: Telephone-based systems to alert others that an individual who is alone is experiencing an emergency and needs assistance. Transportation: Transporting people to medical appointments, community facilities, and elsewhere. Recreation/ services: Physical exercise, art and music therapy, parties, celebrations, and other social and recreational activities. Mental health services: Psychosocial assessment and individual and group counseling to address psychological and emotional problems of patients and families. Adult day care: A program of medical and social services, including socialization, activities, and supervision, provided in an outpatient setting, Respite care: Short-term, inor out-patient services intended to provide temporary relief for the primary caregiver. Dental services: Care of the teeth, and diagnosis and treatment of dental problems. Legal services: Assistance with legal matters, such as advance directives, guardianship, power of attorney, and transfer of assets. Protective services: Social and law enforcement services to prevent, eliminate, or remedy the effects of physical and emotional abuse or neglect. Case management: Client assessment, identification and coordination of community resources, and followup monitoring of client adjustment and service provision. /formation and referral: Provision of written or verbal information about community agencies, services, and funding sources. Hospice services: Medical, nursing, and social services to provide support and alleviate suffering for dying persons and their families. in any of these settings, A few apply only to patients living at home, such as homedelivered meals and home health aide services, but basically the same services (meals and assistance with medications, exercises, and personal care) are also provided to residents of nursing homes, board and care facilities, and State mental hospitals. The list of the services in table 6-1 represents an ideal that is seldom realized. Many services are not available at all in some localities or are available in insufficient quantity to meet local needs. Moreover, some services are not available in certain settings. For example, mental health services are seldom available in nursing homes, in board and care facilities, or at home. The ideal for services and settings is sometimes described as a continuum of care, implying that

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Ch. 6Long-Term Care Services and Settings: An Introduction 203 the services and settings can be ordered to correspond to the increasing disability and care needs of patients. Such ordering maybe valid for physically impaired patients. However, current knowledge of the course of dementia-causing diseases and the care needs of persons with dementia at different stages of their illnesses is insufficient at present to serve as a basis for specifying an order for long-term care services and settings. For example, nursing homes are usually placed at one end of the continuum of careindicating that they are appropriate for severely disabled persons while adult day care and home care are services closer to the other endindicating that they are appropriate for less severely disabled individuals. Yet some people in the early or middle stages of dementia may need institutional care, and some families and adult day care centers are managing extremely debilitated dementia patients at home. Therefore, although the goal of providing a full range of services and settings for persons with dementia remains, the criteria for ordering them in a continuum of care are unknown. Later sections of this chapter discuss the four settings in which persons with dementia live the home, nursing homes, board and care facilities, and State mental hospitalsand two nonresidential settings adult day care centers and community mental health centers. Each section reviews what is known about the number of such persons in the setting, the services they receive, and the problems they experience in obtaining services. Hospitals provide acute medical care for dementia patients, and some also provide care for prolonged periods for such patients, often because no other care setting is available. However, incentives for shorter length of stay associated with the Medicare Prospective Payment System and other government and private cost containment measures are expected to decrease the use of acute care hospital beds for long-term care. At the same time, in response to these and other changes in health care delivery, a growing number of hospitals are developing home care and adult day care services, and a few are converting acute care beds to chronic or long-term care. In addition, hospitals continue to play a pivotal role in referring patients to other community agencies for longterm care (11). This aspect of their role in longterm care is discussed later in this chapter. Inpatient hospice units are a potential care setting for persons with dementia. They primarily serve terminally ill cancer patients, however. Persons with dementia are seldom treated, partly because they may be more difficult to manage than other patients; and partly because of fears about malpractice litigation since persons with dementia may not be competent to consent to withholding or withdrawal of treatment (115,116). To increase the use of hospice services for persons with dementia would require adapting hospice methods to the needs of cognitively impaired people and greater knowledge of the physical, emotional, and social aspects of patient functioning in the late stages of dementia. Since inpatient hospice units seldom serve dementia patients at present, they are not discussed in this chapter. THE CURRENT ROLE OF THE FEDERAL GOVERNMEN T IN LONGTERM CAR E The United States has no national long-term care policy, but the Federal Government is extensively involved in providing, funding, and regulating a wide range of long-term care services. At least 80 Federal programs provide or fund such services, either directly or indirectly. The five programs described in table 6-2 are the major sources of Federal funding for long-term care (88), Their role in funding services for dementia patients is discussed briefly here and at greater length in chapters 11 and 12. The programs listed in table 6-2 pay for a substantial proportion of all long-term care in this country. In 1983, Medicaid paid about $12.4 billion for nursing home care, which represented 43 percent of all public and private spending for such services. Medicare paid $5 OO million, or about

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204 Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias Table 6=2.Major Federal Programs That Fund Long= Term Care Services Medcare/Title XVlll of the Social Security Act Medicare is the Federal insurance program intended to provide medical care for elderly people. Generally those who are 65 or older are eligible, and about 95 percent of these Americans are enrolled in Medicare. People under 65 who have been receiving social security disability payments for at least 2 years are also eligible. Medicare provides reimbursement for hospital and physician services and limited benefits for skilled nursing home care, home health care, and hospice. By law, Medicare does not cover custodial care. Medicaid/Title XIX of the Social Security Act Medicaid is the joint Federal/State program intended to provide medical and health-related services for low-income individuals. Medicaid regulations are established by each State within Federal guidelines; eligibility requirements and the long-term care services that are covered vary significantly among the States. In general, however, Medicaid pays for nursing home and home health care for individuals who meet financial and medical eligibility requirements. In some States Medicaid also covers adult day care and in-home services such as personal care and homemaker services. Social Services Block Grant/Title XX of the Social Security Act The Social Services Block Grant provides Federal funding to States for social services for elderly and disabled people, among others. There are no Federal requirements for specific services that must be provided, but many States use a portion of their Social Services Block Grant funds for board and care, adult day care, home health aide, homemaker, and chore services. States determine the eligibility requirements for these services and may require means tests. Title III of the Older Americans Act Title Ill of the Older Americans Act provides Federal funding to States for social services for people over 60. The specific services that are provided are determined by each State and local Area Agencies on Aging, but Title Ill funds are often used for home health aide, homemaker, and chore services; telephone reassurance; adult day care; respite care; case management; and congregate and homedelivered meals. Means tests are not used to determine eligibility y, but Title Ill services are supposed to be targeted to elderly people with social or economic need. Supplemental Security Income (SSI) SSI is the Federal income support program that provides monthly payments to aged, disabled, and blind people with incomes below a minimum standard ($336 for individuals and $504 for couples in 1966) and assets below $1,700 for individuals and $2,550 for couples, States may supplement the Federal benefit for all SSI recipients in the State or for specified groups, such as those living in board and care facilities. Some States also provide SSI supplements for home health care and homemaker services. SOURCE: U.S. Congress, Office of Technology Assessment, Techr?obgy and Ag/rrg /n Amedca, OTA-BA-2S4 (Washington, DC: U.S. Government Printing Office, June 1W5); U.S. Congress, Congressional Reeearch Sewice, Ftnancing and Delivery of Long-Term Care Services for the Elderly, Oct. 17, 19S5. 2 percent of all spending for nursing home care (88). Both programs require eligible individuals to contribute their own resources to pay for part of the cost of their care. For example, individuals who are covered by Medicaid in a nursing home and who receive a social security check or any other income are required to pay almost all of it to the nursing home. As a result, the 45 percent of total nursing home spending covered by Medicare and Medicaid actually represented a much larger proportion of all nursing home residents, perhaps as high as 65 to 75 percent nationally (37,114) and 85 to 90 percent in some States (21). This somewhat complicated point is important for understanding the extent of government involvement in nursing home care: that is, although Medicaid and Medicare pay less than half the total cost of nursing home care, anyone who receives any Medicaid or Medicare fundingwhether it is $1 or $1,000 for nursing home care (i.e., 65 to 90 percent of all residents) is a Medicaid or Medicare patient for purposes of regulatory requirements discussed below. The proportion of home care paid for by the programs listed in table 6-2 is not known, but experts estimate that Medicare and Medicaid pay for one-third to one-half of all home care (18,72). In 1983, Medicare spent about $1.5 billion for home health care, and Medicaid about $600 million. Social Services Block Grant funds for in-home services for recipients of all ages amounted to some $555 million in 1983. Expenditures for inhome services under Title III of the Older Americans Act are not known, but the fiscal year 1985 appropriation for all Title III services (except congregate and homedelivered meals) amounted to $256 million (88). Little is known about the total cost of board and care or adult day care or the proportion of those costs that is covered by publicly funded programs. However, about 43 percent of all residents of board and care facilities receive Supplemental Security Income (SSI) (58), and Social Services Block Grant funds are used for board and care in some states. Likewise, Medicaid, Social Services Block

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Ch. 6Long-Term Care Services and Settings: An Introduction 205 Grant, and Title III funds are used for adult day care in some States (15). Because government programs pay for such a large portion of long-term care services, government regulations play a significant role in defining and structuring the entire care system. Legislation and program regulations that define which long-term care services are covered determine to a great extent what services are available at all. Thus, for example, Medicare and Medicaid legislation and regulations that restrict coverage to medical and physical care services have resulted in these services becoming predominant over social and mental health services in the long-term care system as a whole. (The impact of Medicare and Medicaid coverage policies on the availability of appropriate services for persons with dementia is discussed in ch. 11.) Similarly, legislation and regulations that define eligibility requirements determine which individuals receive any publicly funded services. For instance, Medicare legislation and regulations define eligibility in terms of the medical and skilled nursing care needs of the patient; as a result, individuals who need only personal care and supervision are ineligible. Long-term care is costly, especially when services are needed for prolonged periods, as is often the case for someone with dementia. Since relatively few individuals or families have sufficient income or assets to pay privately for services for an extended amount of time, the eligibility requirements for publicly funded services determine to a great extent who receives services, at least for extended periods. Some individuals, however, are given wrong diagnoses or diagnoses that are not directly related to their care needs in order to meet the eligibility requirements. (The impact of Medicare and Medicaid eligibility requirements on access to long-term care for dementia patients is discussed in ch. 11. Alternate methods for determining eligibility are discussed in ch. 8.) Legislation and program regulations also define which facilities and agencies may provide covered services. Federal regulations determine which nursing homes and home health care agencies are certified to provide Medicare-funded services. Federal, State, and local government regulations determine which facilities and agencies are certified to provide services funded by Medicaid, the Social Services Block Grant, Title 111 of the Older Americans Act, and SSI. Certification and licensing requirements regulate aspects of each facilitys physical plant, services that must be provided, and the number and type of health care and social service professionals and others who must be available in each facility. For example, regulations specify overall staff-toresident ratios for nursing homes that care for Medicare and Medicaid recipients; the number of required physician visits per year; and the minimum level of involvement of dietitians, social workers, physical therapists, occupational therapists, pharmacists, and other professionals. Although some nursing homes have a physical plant, services, and staffing levels that exceed Medicare and Medicaid requirements, many barely meet the minimum requirements (37), (Licensing and certification procedures and the role of government in regulating quality of care in long-term care facilities and agencies are discussed inch. 10.) The Federal Governments significant role in funding long-term care is well known. Less well recognized is the extent to which Federal legislation and regulations and State legislation and regulations developed within those Federal guidelines determine what services are available, who receives them, and who provides them. Moreover, since Medicaid pays for such a large proportion of all nursing home care, the programs reimbursement rates also have a significant impact on the prevailing charges for nursing home care (38). In many localities, Medicaid rates function as a floor for nursing home charges. Even the long-term care services available to individuals who pay privately are determined in large part by Federal and State program regulations and reimbursement rates. This is because these individuals are often treated in facilities and by agencies that also serve Medicare and Medicaid patients and are, therefore, subject to those programs requirements for physical plant, services, and staffing. A final component of the Federal Governments role in this area is the Veterans Administration (VA), the largest, single provider of long-term care

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206 Losing a Million Minds: Confronting the Tragedy of Aizheimers Disease and Other Dementias services in the country. As of 1983, VA operated 99 nursing homes, with an average daily census of 8,849 residents, and 16 large board and care facilities (called domiciliary care facilities) with an average daily census of 6,852. VA also paid for nursing home care in non-VA facilities for a daily average of 10,212 veterans, for board and care in private homes for a daily average of 11,195 veterans, and for nursing home and board and care in 45 State veterans homes in 33 States, with a daily average of about 11,000 veterans. Home care services were provided through 30 of the 172 VA Medical Centers for more than 7,000 veterans. CONCEPTUAL ISSUE S Adult day care was provided at 5 VA Medical Centers and respite care at 12 (111). The pervasive role of the Federal Government in providing, funding, and regulating long-term care underlines the importance of national legislation and regulations in determining access, quality, and cost of care. Although Federal policies af feet the availability of services for anyone in need of long-term care, they particularly affect those who require services for extended periods, including many persons with dementia. IN LONGTERM CAR E OF PERSONS WITH DEMENTI A Several basic conceptual issues arise repeatedly in discussions about long-term care for persons with dementia and underlie policy-related questions about eligibility, personnel and trainin g, quality assurance, and financing. These issues are summarized below; their policy-related implications are introduced here and discussed at greater length in relevant chapters. l What are or should be the relative roles of families and formal long-term care services in the care of persons with dementia? This question (also discussed in ch. 4) is answered in different ways by different people, Some people believe that formal long-term care services completely replace services once provided by the family. Thus they believe that when a family is overcome by the burden of care and gives up, long-term care facilities and agencies should take over. Other people believe that formal longterm care facilities and agencies provide specific services that families cannot provide, such as skilled nursing care, occupational or physical therapy, or, on a simpler level, assisting an elderly caregiver with bathing a patient he or she is unable to lift. Thus, they believe that when such services are provided in the home, they forestall nursing home placement, allow individuals to remain at home longer, save public dollars, and mitigate the burden of care for families, without taking over tasks family members are able to perform. Photo credit: ADRDA and Peter Cwrol, Photosynthesis Productions, Inc. Families and paid caregivers may be equally capable of providing some long-term care services for persons with dementia. Still others believe that families and formal longterm care facilities and agencies are equally capable of providing needed services and that formal services should be used on an intermittent basis to provide relief for a family. This model of carethe respite care model-appears to be evolving concurrently with the growing recognition of the care needs of persons with dementia and may, in fact, be developing in response to their care needs. Specifically, respite care would be a uniquely appropriate model of care if those with dementia are seen to require supervision and assistance with

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Ch. 6Long-Term Care Services and Settings: An Introduction 207 activities of daily living (services that many families can provide) more frequently than others receiving long-term care, and to require skilled nursing care, occupational therapy, and physical therapy (services that families ordinarily cannot provide) less frequently. It is unclear whether one of these models is most appropriate for everyone with dementia or whether the appropriate model depends on patient characteristics, family characteristics, stage of illness, or all three. Obviously, the question of responsibility for the care of persons with dementia involves both providing provision of services and paying for them. Theoretical and practical considerations in deciding who should pay for longterm care for persons with dementia are discussed in chapter 12. l How does the concept of respite care relate to the underlying rationale for existing long-term care services? Long-term care services funded by Medicare and Medicaid are intended to address medical and health-related needs, while services funded by the Social Services Block Grant and Title III of the Older Americans Act are meant to meet specific social service needs. In contrast, respite care aims to temporarily relieve families of caregiving responsibilities. It can involve any services that fulfill that purpose and often consists primarily of patient supervision during the absence of a family caregiver. In general, using long-term care services funded by Medicare and Medicaid for respite care is inconsistent with the current intent of the programs, and regulations often restrict such use. (Medicare and Medicaid waiver programs discussed in this chapter and ch. 11 do sometimes allow respite care,) Similarly, the intent and regulations of programs that fund specific social services must be stretched when the need is not necessarily for these services but rather for a temporary caretaker. Thus, the concept of respite care and the underlying rationale for existing long-term care services are mismatched: existing services are intended to address specific needs, while respite care does not imply specific services. Further, the emphasis in existing services is on a patient and his or her needs; respite care, although required because of an individuals condition, responds primarily to family needs. These conceptual differences raise questions about the kinds of services that should be included in respite care programs and how they can be defined in legislation and regulations. The difference in focus on the needs of recipients versus those of families raises questions about how to determine eligibility for publicly funded respite care services and whether it should be based on individual needs, family needs, or some combination. (The difficulty of defining and measuring family needs for the purpose of eligibility determination is discussed in ch. 8.) l What is the appropriate role of mental health services and settings in the care of people with dementia? Primarily for historical reasons, most individuals with dementia receive long-term care services from facilities and agencies that focus on medical and physical care needs. Relatively few are cared for in State mental hospitals or other psychiatric facilities or receive services from outpatient mental health centers. Moreover, mental health professionals, such as psychiatrists, clinical psychologists, psychiatric social workers, and psychiatric nurses, are seldom employed in nursing homes or other facilities and agencies that provide long-term care for those with dementia (9,92). Although experts agree that dementia is an organic condition and not a mental illness per se, the emotional and behavioral problems often associated with it suggest that the expertise of mental health professionals may be particularly relevant to the care of persons with dementia (34,69,70). In nursing homes and in board and care facilities, residents with dementia and those with chronic mental illnesses, such as schizophrenia, are sometimes considered to have similar care needs. However, the emotional and behavioral problems of nursing home residents are seldom identified or evaluated (123). As a result, it is not clear whether the problems and long-term care needs of these two groups are similar. It is also unclear whether either or both groups could be better cared for in mental health settings. It is interesting to note that in some countries a significant portion of long-term care services for elderly

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208 l Losing a Million Minds: Confronting the Tragedy of A/zheimers Disease and Other Dementias people is called psychogeriatric care. In the United States, although many State mental hospitals have psychogeriatric units and VA maintains some psychogeriatric wards (12 in 1981) (111), the concept of psychogeriatric care is not widely recognized, nor are long-term care services usually provided in this model. For Federal policy purposes, the question of the role of mental health services and settings in the care of persons with dementia has implications for personnel and quality assurance regulations and requirements for funding for mental health services in nursing homes and board and care facilities. For example, Medicare and Medicaid do not require nursing homes to provide mental health services for residents (9,34). If such services are believed to be important for individuals with dementia, changes in these regulations may be needed. A related issue is whether government should promote long-term care for persons with dementia in mental health facilities. l Can the long-term care needs of persons with dementia who are under 65 be adequately met within the existing system? Individuals with dementia usually receive longterm care services in facilities and agencies that primarily serve elderly people. It is unclear whether the long-term care needs of younger people differ significantly from those of older ones and whether the needs of both groups are equally well (or poorly) met in these settings. In addition, eligibility requirements for some long-term care services exclude those who are under 60 or 65, and the process of establishing eligibility for other programs, such as Medicare, is considerably more difficult for those under 65 (see ch. 11). Whether and how long-term care services should be adapted to the needs of younger persons with dementia and whether public funding programs should be restructured to include all everyone with dementia on the same basis is an important policy issue. l What is the role of the Veterans Administration in providing long-term care services for dementia patients, and how are VA services related to non-VA services? Although VA provides and funds long-term care services for many veterans, providing services for those with dementia is problematic for two reasons. First, VA services are provided on a priority basis to veterans with service-connected disabilities. Since dementia is seldom service-connected, veterans with dementia are accorded a lower priority than those with a service-connected disability. About 70 percent of those receiving VA services do not have service-connected disabilities (89), but an OTA survey of family caregivers found that 45 percent of persons with dementia who applied for VA long-term care services were refused, most often because of lack of a service-connected disability (122). A second problem is that VA services have traditionally focused on the veteran and not the family. Providing respite care would require a change in this traditional focus (112). Despite these problems, VA is providing services for many veterans with dementia. In fiscal year 1983, VA hospitals and nursing homes treated 11,2OO veterans with a primary diagnosis of a dementing disorder and about 9 ) 0 0 0 others who had dementia as a secondary diagnosis. VA has developed several special care units for persons with dementia (112), and the agency is currently surveying all its facilities to determine service availability and gaps for such persons (19). Over the next 15 years, the number of veterans in older age groupsand therefore at greater risk for dementiawill increase dramatically. In 1980, some 3 million veterans were over 65, but by 2000 that number will increase to 9 million, representing 63 percent of all males over 65 (111). In view of this very large population base, VA could build more facilities, purchase care for veterans in nonVA facilities, restrict eligibility for no-cost services, or limit the services it covers. Legislation passed by Congress in 1986 limits eligibility for veterans with non-service-connected disabilities to those who have incomes of $15,000 or less for a single veteran, $18,000 or less for a veteran with one dependent, with $1)000 added for each additional dependent. Veterans with non-service-connected disabilities and income above these levels may receive VA services if the services are available and if the veteran contributes to the cost of care (106).

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Ch. 6Long-Term Care Services and Settings: An Introduction 209 Although VA has traditionally limited care for veterans with non-service-connected disabilities, such as dementia, the families of these individuals often expect VA to provide care and sometimes complain to their Representative or Senator when it is denied. Several bills have been introduced in Congress to require VA services for veterans with dementia. For example, HR 1102 would have required VA to allocate 10 percent of its long-term care beds to dementia patients. This bill was not enacted. As the number of elderly veterans increases, Federal policies that provide long-term care in VA facilities for veterans with dementia would relieve non-VA facilities of the burden of caring for them but would simultaneously increase VA expenditures. Policies that allow the agency to purchase care from non-VA facilities would also increase VA expenditures but eliminate the need to build more VA facilities. Policies that deny VA services and coverage of services in non-VA facilities would shift the burden and cost of caring for veterans with dementia to non-VA facilities and to Medicare and Medicaid. Thus, VA eligibility and funding policies affect the need for non-VA facilities and services and Medicare and Medicaid expenditures for long-term care. Although the problem of integrating VA and non-VA long-term care services has received considerable attention in general (96)105)110)111,120), the relationship of the two in providing services for persons with dementia has received little attention. l What long-term care services can and should be provided for persons with dementia in rural areas? Many rural areas lack long-term care facilities, and lengthy travel times may make services such as adult day care impractical. Long distances and insufficiently trained personnel can also interfere with delivery of home care services. In some cases, lack of home care and adult day care may result in early placement of individuals with dementia in long-term facilities far from their homes. In other cases, lack of services intensifies the burden for families who care for them at home. Analysis of long-term care policy options should include consideration of their effect on persons with dementia in rural as well as suburban and urban areas. l How do the long-term care needs of minority group members with dementia differ from those of nonminority group members? Little is known about the care of minority group members with dementia. Although epidemiologic research indicates no difference in the prevalence of most dementing conditions among minority groups (see ch. 1), differences in attitudes, beliefs, and other characteristics among such groups may affect the way persons with dementia are regarded by their families and the larger communityfor example, whether they are seen as physically ill, mentally ill, or simply old. Ethnic and cultural factors affect patterns of informal caregiving and the use of medical, mental health, and social services. They also determine the most effective methods of informing patients and their families of available services (54). Differences in minority group characteristics affect the validity of assessment procedures used to determine eligibility for services (see ch. 8), and they have important implications for staffing requirements and quality assurance regulations for long-term care facilities and agencies. Because minority group status is frequently associated with low income, minority group members are more likely than others to depend on publicly funded programs that are means-tested. For example, 22 percent of black elderly and 25 percent of Hispanic elderly received SSI in 1981, compared with only 5 percent of the elderly population in general (57). Thus SSI policies can be expected to have a greater impact on access to long-term care services for minority group members than for the general population. Similarly, a higher proportion of blacks and Hispanics use VA as their sole source of health care (111). Therefore, VA policies may affect long-term care for minority groups disproportionately. Different minority groups vary greatly on a wide range of characteristics, and no generalizations can be made about how all or even the majority of these groups react to and care for persons with dementia. Examples from minority groups are used throughout this and the following chapters to point out variations in patient care needs, informal caregiving patterns, and formal service utilization that are relevant to the development of public policy. At the same time, OTA recognizes

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210 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias the considerable differences in attitudes, beliefs, and characteristics within and between minority groups, and no stereotypes are intended. l What is the appropriate balance of institutional and noninstitutional long-term care services for persons with dementia? Some publicly funded programs, notably Medicaid and the VA, have encouraged institutional long-term care over home care in general (81,88, 111), Long-term care experts agree, however, that services for all kinds of patients should be provided in the home whenever possible and that program regulations should be changed to promote home care and services such as adult day care for those living at home. This approach is generally accepted for those with dementia, and as a result, families, health care and social service providers, and others are asking for increased services for individuals with dementia who are living at home. The bias in favor of home care is strong, and nursing homes and other such institutions are often perceived negatively. At the same time, the OTA survey of family caregivers found that 80 percent agree that a patient with a severe case of Alzheimers disease should be living in a nursing home (122). Similarly, the Massachusetts Governors Committee on Alzheimers Disease found that because all patients with Alzheimers Disease who survive long enough eventually require total care, the majority end up in institutions (27). Thus institutional care is seen as unavoidable for many individuals in late stages of dementing illnesses. For several reasons, institutional care may also be appropriate for some patients in earlier stages of the illnesses: Because of decreased cognitive ability and judgment, most individuals with dementia require 24-hour supervision. Those who do not have a family member or other person willing and able to provide that supervision may need institutional care, regardless of their other care needs, because the cost of 24-hour supervision at home is usually prohibitive. For family caregivers, behavioral disorders of some persons with dementia maybe emo Photo credit: ADf?DA and Peter Carrd, PhobSynthesls Productions, lnc~ Families and health care and social service providers agree that home care is the first choice of persons l l l with dementia. tionally intolerable. In addition, some family caregivers who are smaller than the patient or who have sensory impairments may be physically at risk from some behavioral disorders. Such disorders may be more likely in the early or middle rather than the late stages of the illnesses. Although the home is often said to be the least restrictive setting for long-term care, individuals who wander and whose behavior is socially unacceptable may actually require fewer restrictions in institutional settings that allow such behaviors. Some environmental adaptations believed to facilitate improved functioning are feasible in institutional settings and adult day care centers but less so in the home. Social stimulation is also easier to provide in a group setting. In situations where the relationship between the patient and caregiver is poor, institutional placement may be necessary to avoid possible neglect or abuse at home. For these reasons, institutional care may be the most appropriate long-term care option for some individuals with dementia even if they are not in the late stages of the illness, when total nursing care is needed, and even if formal home care services are available. The prevailing negative attitudes about nursing homes and other institutional set-

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Ch. 6Long-Term Care Services and Settings: An Introduction 211 tings increase the guilt of family members who decide that institutional placement is the best course. Such attitudes also discourage the use of nursing homes for respite care and may discourage some family members from remaining involved with their relative after placement. l Do persons with dementia require special long-term care services? Perhaps the most important conceptual issue in long-term care for persons with dementia is whether they constitute a definable group with distinct care needs. The related policy issue is whether the Federal Government should create incentives for developing special long-term care services for them. Although most people agree that the long-term care system needs improvement, in general, some argue that the needs of this group are different and that special services and settings are needed. Others believe that everyone who requires long-term care has special care needs, and that making the existing system more responsive to the needs of each individual is a better approach than singling out one group for special care. These two points of view raise important theoretical questions that have received little attention despite the growing interest in special services for persons with dementia. One overriding question is whether the category dementia patients is conceptually clear. Who is included? Only those with Alzheimers disease or other primary degenerative dementias? What about individuals with multi-infarct dementia or Huntingtons disease, or elderly persons with physical conditions that have dementia as a side effect of the disease or its treatment? If a category can be delineated, what are the long-term care needs of that group? Are their needs sufficiently similarand sufficiently different from those of other patientsto warrant a separate care system? The corresponding practical questions are whether persons with dementia can be accurately distinguished from other long-term care patients, which services they need, who can best provide them, and how much they should cost. Thus far, these questions have been answered in different ways by the many different individuals, groups, and agencies that have developed special services for persons with dementia. At the point when Federal, State, or local government begins to provide or fund special services for persons with dementia, these questions require answers that can be translated into eligibility requirements, staffing and quality assurance regulations, and reimbursement guidelines. LONGTERM CARE SETTINGS AND SERVICE S The following sections describe six settings that provide long-term care services for persons with dementia and other persons. Each section discusses the nature of those who are served, the quality of care, and access to the services for persons with dementia and their families. Three distinct systems provide long-term care services: 1. the medical or physical care system, which includes nursing homes and home health care agencies and is funded primarily by Medicare and Medicaid; 2. the aging services system, which includes Area Agencies on Aging and homemaker and home nutrition providers and is funded by Title III, the Social Services Block Grant, and State and local funds; and 3. the mental health system, which includes State mental hospitals and community mental health centers and is funded by Medicaid, a Federal block grant, and State and local funds. Persons with dementia are seldom differentiated from others who receive services in each of these systems. Thus individuals with dementia who receive services in the medical or physical care system are grouped conceptually with physically impaired elderly people, and increasingly both groups are described in terms of limitations in their self -care abilities or activities of daily living (ADLs). Those with dementia who receive services through the aging services system are grouped with physically impaired elderly people, and both groups are described under the rubric frail elderly,

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212 Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias Finally, persons with dementia who receive services through the mental health system are grouped with those who have chronic mental illnesses, and both sets of patients are described as mentally ill. Individuals with dementia are seldom identified as a discrete group in long-term care research, and as a result, there are few studies comparing them with others who receive long-term care in terms of their characteristics, care needs, or experiences with facilities and agencies. Failure to identify them as a discrete group occurs partly because interest in these patients as a group has developed only recently, partly because of conceptual and practical difficulties in defining the group, and partly because aspects of the existing long-term care system, including eligibility, certification, and reimbursement regulations, tend to discourage their identification as a group. Information in the following sections is largely from research in which the study populations include an unknown number of individuals with dementia. Although the population of elderly State mental hospital patients with a diagnosis of organic brain syndrome clearly includes many persons with dementia, it is more difficult for example to identify such persons in the three categories that have been used in research on board and care facilities: aged, mentally ill, and mentally retarded residents. Thus the accuracy of available information about the number of people with dementia in each setting varies. Moreover, for most settings, no comparisons are available of the characteristics and care needs of persons with and without dementia, or of the services most frequently provided for each group. The following sections draw on the OTA survey of family caregivers (122) described in more detail in chapter 4. In addition, in the past few years, several State-sponsored committees and task forces have studied services for persons with dementia, and their reports specifically address the needs of these persons. Some of their findings are cited here; in general, they are based on anecdotal such. The six low are: 1. State reports and should be interpreted as long-term care settings described bemental hospitals, 2. nursing homes, 3. board and care facilities, 4. home care, 5. adult day care centers, and 6. community mental health centers. State Mental Hospitals State mental hospitals are usually large psychiatric facilities that provide acute and long-term care for mentally ill people. They are seldom included in reviews of long-term care settings, but until 30 to 40 years ago, they were the formal long-term care setting used most frequently for persons with dementia. Since then, factors largely unrelated to the care needs of such persons have resulted in decreased use of State mental hospitals for institutional care of persons with dementia and increased use of nursing homes and, to a lesser extent, board and care facilities. During the 1700s and early 1800s, people who could not live independently because of acute or chronic physical or mental impairments and who had no source of informal care lived in locally supported almshouse. It is not known how many individuals with dementia lived in almshouse because the category dementia patients was unknown at that time; many of the diseases that cause dementia were not understood, and confusion was seen as a natural concomitant of old age. Some portion of those in almshouse undoubtedly had a dementing disorder, however. Beginning in the mid-1800s, mentally ill people who would previously have been placed in almshouse were instead cared for in State-supported mental hospitals, called asylums. At first, these facilities admitted only patients with acute mental illnesses. Over the next century, however, and particularly after 1900, State mental hospitals provided care for an increasing number of chronically mentally ill and senile people (29,60). By 1946, some 44 percent of all first admissions to State and county mental hospitals had a diagnosis of organic brain syndrome (not including drugor alcohol-induced organic brain syndrome) (102), and 30 percent of the residents of State mental hospitals were over 65 (48). Even though the term dementia was not used to describe the ailments of these individuals, it is clear that many and perhaps most of them had dementing illnesses.

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Ch. 6Long-Term Care Services and Settings.: An Introduction l 273 In the late 1940s and 1950s, several developments combined to create a new direction in treatment of those with mental illnessthe community mental health movement. This movement grew in part from the recognition that large State mental hospitals had become primarily custodial facilities where little treatment was provided, and in part from the development of psychotropic drugs and brief therapy methods that made outpatient care feasible for many patients. The movement, with its primary tenet that mental health services should be provided in the community whenever possible, led to the process of deinstitutionalization. As a result, between 1955 and 1980, the overall population of State mental hospitals decreased by 75 percent (44)60). Likewise, between 1946 and 1972, the proportion of first admissions to State mental hospitals with a diagnosis of organic brain syndrome dropped from 44 to 10 percent (102). For elderly people, deinstitutionalization resulted primarily in reduced use of State mental hospitals and increased use of nursing homes and related care facilities. Table 6-3 documents the magnitude of this change, Increased use of nursing homes was spurred by the enactment of Medicaid in 1965, which for the first time provided public funding for nursing home care on a national basis. With the introduction of Supplemental Security Income (SSI) in 1972, a federally guaranteed minimum income for elderly and disabled people was available for the first time. Moreover, some States provided additional funds for SSI residents in board and care facilities. The availability of SSI and State SSI supplements encouraged the discharge of persons with dementia (and of other State hospital residents) to board and care facilities (48). Table 6-3.Residents of Mental Hospitals and Homes for the Aged Who Were 65 or Older: 1950, 1960, 1970, and 1980 Rate per 100,000 persons 65 or older Type of institution 1950 1960 1970 1980 Mental hospitals, 1,150 1,074 563 200 Homes for the aged/dependent 1,769 2,342 3,966 4,835 SOURCE Based on P Lerman Delnstltutlonallzatlon and Welfare Pollcles In the Welfare State In America Trends and Prospects ,4rxmcmi Academy of Pd/f/ca/ and SocM/ SCP errces1985 Arma/s 479 132.155 1985 Historically, changes in the primary locus of institutional care for persons with dementiafrom almshouse to State mental hospitals, and from there to nursing homes and board and care facilitieshave occurred primarily in response to financial incentives. Placing these persons in State mental hospitals instead of almshouse transferred the cost of their care from local to State government (29). Similarly, placing them in nursing homes and board and care facilities instead of State mental hospitals transferred part of the costs to the Federal Government through Medicaid and SSI (48,60). There is no evidence that these changes occurred in response to the care needs of individuals with dementia, or that their care needs and the effect on them of changes in the locus of care were even considered. The number of persons with dementia in State mental hospitals is not known. The 1980 census counted 51,000 elderly people in all mental hospitals (48), and some observers suggest that many of them have dementia even though their diagnoses may indicate mental illness (6). The National Association of State Mental Health Commissioners recently appointed a Task Force on Alzheimers Disease that will develop estimates of the number of persons with dementia in such facilities (49). Current admission practices in many State mental hospitals discourage admission of persons with dementia who can be managed in other settings (64,68), but clearly some, and perhaps many, are admitted. The Rhode Island Legislative Commission on Dementias Related to Aging described why persons with dementia might be transferred from nursing homes to State mental hospitals: If the patient becomes aggressive, combative or in some manner endangers himself, other patients, or members of the nursing home staff, and such behavior cannot be controlled adequately through the use of physician-ordered pharmacological or physical restraints, the nursing home facility will then arrange for his transfer to one of the state hospitals. Transfer may also be initiated if the patient wanders continually and cannot be restrained or monitored effec tively (68). In some cases, State mental hospitals are able to adjust medications to bring the behavior of these

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214 Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias persons under control so that they can return to the nursing home. Persons with dementia who are living in the community are sometimes brought to State mental hospitals because of behavior that is considered dangerous to themselves or others, and some are brought in by the police on an emergency basis when they are picked up wandering in the streets (27). How often such situations occur is not known, however. Although State mental hospitals have been criticized for providing only custodial care, some persons with dementia receive excellent treatment in these facilities, as the Massachusetts Governors Committee on Alzheimers Disease heard: To my surprise and relief our experience with (the) State Hospital turned out to be a positive one during most of my fathers 18-month stay there. He was taken off all medication immediately. The doctors, nurses, and attendants we met there were kind and competent. Within six weeks my fathers behavior had adjusted to the point where it was thought that he could function in a nursing home. On the recommendation of the hospital social worker my father was placed in a particular nursing home. She brought him there on a Friday. We decided to give him a few days to adjust to his new surroundings. On Sunday afternoon my mother, brother, and I walked into my fathers room to find him tied to a chair, naked, drugged, and in a pool of urine. I called up the social worker at (the hospital) and told her what we had found. She said she would investigate. The next day she found my father in the same condition and returned him to (the) State Hospital where he stayed until he died 18 months later (27). Although little consideration has been given to providing long-term care for persons with dementia in State mental hospitals, at least one State task force has proposed developing a demonstration special care unit in one facility (68). Such a unit could provide a model of care based on a mental health rather than medical or physical care principles. One problem with this approach is that care in State mental hospitals can cost considerably more than in nursing homes. Since Medicaid funding is available for elderly patients in mental hospitals, the cost of care for Medicaid-eligible elderly people is shared by the Federal and State government. Medicaid does not cover those under 65 in mental institutions, and there is variation among States in how these patients are paid for. Generally, however, the cost is borne by State and local government. Nursing Homes Nursing homes are health care facilities that provide 24-hour supervision, skilled nursing services, and personal care. They are now the most frequently used institutional setting for persons with dementia. Care is provided primarily by nurses and by nurses aides under their supervision. Although both Medicare and Medicaid regulations emphasize the nursing component of nursing home care, many persons with dementia do not need skilled nursing services, and for them the most important components of nursing home care may be 24-hour supervision and personal care. At present, there are 14,000 to 15,000 nursing homes in the United States, with about 1.5 million beds (37,77). (Both the National Master Facility Inventory (NMFI) and the National Nursing Home Survey include a large number of facilities (about 11,000 in the 1982 NMFI) that do not employ any nurses or provide nursing services. These are discussed in the section on board and care facilities in this chapter.) About 75 percent of nursing homes are for-profit facilities, 20 percent are non-profit, and 5 percent are government-owned (101), In 1982, some 7,000 nursing homes were certified to provide Medicare and/or Medicaid skilled nursing care and are called skilled nursing facilities (SNFs). About 5,500 others were certified to provide Medicaid intermediate level care (101) and are called intermediate care facilities (ICFs). Many nursing homes have some beds certified at the SNF level and some at the ICF level. Another 1,500 nursing homes, although they provided nursing care, were not certified by either Medicare or Medicaid (77). The main difference between skilled nursing facilities and intermediate care facilities is that Federal regulations require SNFs to provide 24-hour services by licensed practical nurses (LPNs) and to employ at least one registered nurse on the day

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Ch. 6Long-Term Care Services and Settings: An Introduction 215 shift, 7 days a week. ICFs must have at least one LPN on duty during the day shift 7 days a week. State Medicaid regulations that define SNFs and ICFs vary greatly, and the proportion of nursing homes in each category also varies. For example, all or almost all nursing homes in Arizona and Connecticut are certified as SNFs, while almost all those in Iowa and the District of Columbia are certified as ICFs. Few differences have been found in the kinds of individuals cared for in SNFs and ICFs in different States, and the Institute of Medicines Committee on Nursing Home Regulation recently recommended that the distinction between them should be dropped (37). The impact of such a change on access to nursing homes by persons with dementia requires further analysis. Nursing home bed supply varies widely, from a low of 22 beds per 1,000 elderly residents in Florida to a high of 94 in Wisconsin (94). Total bed supply increased steadily from 1963 to 1977, but the rate of increase has slowed since then, partly in response to State efforts to limit bed supply in order to contain Medicaid expenditures. Since 1977 the supply has grown at a rate slower than the growth in the population age 75 or older, thus limiting access to nursing home care in general (94,114). Residents With Dementia in Nursing Homes Until recently, scant information was available about the number of persons with dementia in nursing homes. The 1977 National Nursing Home Survey found that 7 percent of residents had a primary diagnosis of chronic brain syndrome, and 2 percent had a primary diagnosis of senility without psychosis (97). NO information was obtained about other diagnoses associated with dementia. However, nurses were asked about each residents chronic conditions. According to the nurses, about 25 percent of all residents had chronic brain syndrome and 32 percent were senile, with prevalence increasing with age (see figure 6-1) (97). The difference between the small proportion of nursing home residents with a primary diagnosis of chronic brain syndrome or senility and the much higher proportions identified by the nurses is partly explained by diagnostic practices Figure 6-1 .-Nursing Home Residents With Chronic Brain Syndrome or Senility as Assessed by Nurse Respondents, by Age, United States, 1977 4 0 30 20 10 I SOURCE: U.S. Department of Health and Human Services, Public Health Service, National Center for Health Statistics, Characferistks of Nurs/rrg Home Residents, Hea/th Status, and Care Received: Nationa/ Nursing Home Survey, United States, May-Oecember 1977, series 13, No. 51, DHHS Pub. No. (PHS) 81-1712, Hyattsviile, MD, 19S1. that resulted in underdiagnosis of dementia, as discussed in chapters 1 and 3. In addition, Medicare and Medicaid policies that define eligibility in terms of medical and nursing care needs discourage the use of diagnoses that suggest the need for personal care and supervision instead. (See also the discussion of the percent rule in ch. 11.) Since 1977, diagnostic practices have changed considerably, and higher proportions of nursing home residents now have a primary or secondary diagnosis of dementing disorders, at least in some States. A 1985 survey of Texas nursing homes found that 45 percent of the residents had a diagnosis of Alzheimers disease and an additional 21 percent had diagnoses of other dementing disorders (86). A 1984 survey of New York nursing homes found that 41 percent of residents had a diagnosis of a dementing disorder (22). Although some observers believe that dementia, and particularly Alzheimers disease, is now being overdiagnosed for nursing home residents, research based on assessments of cognitive status rather than diagnoses suggests that at least

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216 osing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias 40 percent have a dementing disorder, and in some facilities the proportion is even higher. A 1983 study in Rhode Island using a cognitive rating scale to assess mental status found that 40 percent of those under 80 and 50 percent of those older had dementia (68). Another study found that 56 percent of the residents of a Maryland nursing home had a primary degenerative dementia, another 18 percent had multi-infarct dementia, and 4 percent had dementia associated with Parkinsons disease a total of 78 percent with dementing disorders (70). In addition to residents with cognitive impairment caused by the dementing disorders that are the subject of this OTA assessment, nursing homes serve people with cognitive impairments caused by acute and chronic diseases, by drugs taken to treat those diseases, by pain or terminal illness, and by mental retardation, They also serve people who appear to be cognitively impaired because of hearing and speech impairments or emotional withdrawal associated with depression. Nurses, nurses aides, and other staff often do not distinguish between cognitive impairments caused by dementing disorders and those due to these other factors. (Some of the difficulties involved in making such distinctions are discussed in ch. 8.) Little research has been done on the characteristics and care needs of persons with dementia in nursing homes. One study (70 found that many of these persons have coexisting psychiatric disorders (e.g., delusions, hallucinations, or depression) and behavioral disorders (e.g., restlessness, agitation, wandering). The length of stay of nursing home residents varies greatly, and several studies indicate that residents with mental disorders, including chronic brain syndrome and senility, tend to be among those who stay longest and, therefore, may be more likely than other residents to become eligible for Medicaid (42,53). Many nursing home administrators and employees believe that persons with dementia are more difficult to care for and require more staff time than other residents. A study of Maryland nursing home residents found that those with behavioral disorders required 35 percent more staff time than those without behavioral disorders; however, the residents were not identified by diagnosis or cognitive status (2). To investigate this question, OTA contracted with Rensellear Polytechnic Institute for a retrospective analysis of data collected in the development of a new reimbursement system for New York State nursing homes, called RUG-II. Initial findings showed that nursing home residents with a diagnosis of dementia varied greatly in terms of limitations on activities of daily living, behavioral disorders, and care needs (22), The New York State data included no measure of cognitive status, so the severity of dementia could not be determined. Nevertheless, an attempt was made to develop a rough index of severity by combining data on five survey items that may be related to cognitive statusresidents learning ability, motivation, refusal to care for self, expressive communication, and receptive communication/comprehension. (The wording of these items and the resident descriptors used to develop the index of severity are presented in app. A.) Analysis of the New York State data using resident diagnosis and the index of severity showed that persons with dementia were in general more impaired than other residents in activities of daily living and behavior, and that their level of impairment became greater with increasing severity of the dementia. For example, a greater number of those with dementia required continuous supervision with eating or had to be fed by hand; 61 percent of those in the high severity group required assistance compared with about 6 percent in the low severity group. Similar results were obtained for dressing, bathing, toileting, bowel and bladder control, and personal hygiene. The data also showed that residents with a diagnosis of dementia were more likely than others to be wanderers, but that wandering was most frequent among those in the low and middle severity groups and decreased in the high severity group. Other behavioral disorders, including verbal abuse, physical aggression, and regressive or inappropriate behavior also occurred more frequently among residents with dementia (22) (see app. A). These findings suggest that although many nursing home residents who do not have dementia require substantial assistance with activities of daily

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Ch. 6Long-Term Care Services and Settings: An Introduction 217 living, on average those with dementia require more aid. Because they are also more likely to have behavioral disorders, residents with dementia generally require more staff time. Thus, as nursing home administrators and employees maintain, persons with dementia are frequently heavy care patients. The more severe the dementia, the more assistance is needed, although behavioral disorders appear to lessen at the highest level of severity. It should be noted, however, that these data were collected almost entirely in facilities that do not provide special services for persons with dementia. As discussed in chapter 7, some nursing homes with special services for these persons report decreased limitations in activities of daily living and behavioral disorders among their residents. Quality of Care for Residents With Dementia Nursing homes have been criticized for a long list of deficiencies that affect all residents, regardless of cognitive status. The criticisms range from widespread complaints about inadequate attention to residents emotional and social needs and need for privacy to less frequent but serious complaints about dangerous medication errors and resident abuse and neglect (37,105). This assessment does not discuss these general problems in nursing homes except to note that some deficiencies are related to low levels of reimbursement for Medicaid patients and to Medicare and Medicaid regulations that focus on physical and nursing care needs to the exclusion of emotional and social ones. In addition to problems that affect all nursing home residents, some care practices even in good nursing homes are inappropriate for persons with dementia: Cognitive status is not routinely assessed. As a result, the primary reason the person with dementia needs nursing home care is not identified or evaluated. Although some residents with dementia need nursing home care because of other physical problems, failure to identify cognitive deficits affects the quality of their care overall. Most nursing home personnel are not trained to care for people with dementia and are not l l l l aware of management techniques that could lessen functional disability and behavioral disorders. Medications that could reduce agitation and other behavioral problems associated with dementia are frequently not used, sometimes because the physician is not aware of the behavioral problems but more commonly because he or she does not know which drugs to use or in what dosage. In some cases, individuals with dementia are given the wrong drug or excessive doses of drugs that increase their confusion and may cause extreme drowsiness and falls. Most nursing homes are designed to accommodate residents who are relatively immobile, and there is seldom enough space for those with dementia who may be physically active until the late stages of their illness. Restraints are frequently used to keep them from wandering or restless pacing, and some develop physical disabilities associated with forced immobility. Since exercise is seldom part of the daily routine, residents with dementia who are capable of physical activity often become increasingly agitated. The regular practice of rotating staff from one unit to another is a problem for persons with dementia who may be able to remember staff they see every day but cannot remember over longer periods of time and may become agitated when repeatedly confronted with caregivers they do not recognize. Increased noise and activity associated with shift changes, fire drills, or even activities that are pleasant for other residents, such as a parade through the nursing home of schoolchildren in Halloween costumes, can be agitating for people with dementia. The disembodied voice heard over an intercom can also be confusing. Staff-to-resident ratios in most nursing homes may be inadequate for residents with moderate to severe dementia. It is possible, however, that in nursing home units designed specifically for persons with dementia, good care can be provided without higher staff-to-resident ratios (see ch. 7). Residents from minority groups may have particular difficulty adjusting to nursing home care because of differences in attitudes, expectations,

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.-. 218 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias and typical behavior patterns. Those with dementing disorders may have even more difficulty because they often cannot understand or adapt to these differences. And those who are non-English speaking are most severely affected for they cannot communicate with staff or other residents at all. In many areas of the country, nurses aides are primarily from minority groups, and some are recent immigrants. When the residents of the home are predominantly of the majority culture, misunderstandings and tension can develop between the staff and the residents. Residents with dementia may be particularly unable to understand and adjust to staff from minority groups or from other countries. By the same token, however, such staff members are able to communicate with and relate to residents from the same minority group or country who might otherwise be isolated in the facility. The care of non-English speaking residents with language deficits associated with dementia is greatly facilitated if someone on staff speaks the residents original language. Residents with dementia not only experience problems in nursing homes but also create them. Due to deficits of memory and judgment, they may touch, move, or take other residents possessions. In addition, their agitation, restlessness, noisiness, and occasional physical or verbal aggressiveness can upset other residents. Some nursing homes place cognitively impaired and cognitively normal residents in the same room, sometimes because they fail to consider cognitive differences but more often because they believe that the cognitively normal resident can help orient the cognitively impaired one. Although the efficacy of this approach has not been tested, other providers believe it is generally unfair to nondemented residents to be placed in a 24-hour living situation with someone with dementia and that residents with similar cognitive abilities should be roommates (1,13,121). Research on the effects of pairing residents with and without cognitive impairment is needed. Despite the many problems of nursing home residents with dementia, the OTA survey of family caregivers found that 55 percent of those who had experience with a family member living in a nursing home reported that the care was excellent or good, and that only 16 percent reported that it was poor or very poor. Comparing these findings with the answers to other questions on the survey indicates that families who had experience with nursing homes had more positive attitudes about them than families who had no such experience (122). It is possible, however, that these attitudes mask a feeling of guilt about having placed a family member in a nursing home. Few examples of positive experiences of dementia patients in nursing homes are found in the literature, but anecdotal evidence suggests that some people benefit from placement: Mrs. P, suffering from Alzheimers disease, had been living with her daughter, a tense woman who had difficulty tolerating Mrs. Ps repetitious questions and seemingly aimless fussing around the house. Over a period of months, the daughter became increasingly irritated and often spoke sharply to Mrs. P, who grew more and more agitated in response. Finally, when Mrs. P began to have occasional episodes of incontinence, her daughter could tolerate the situation no longer and placed her in a nursing home. Mrs. P had a pleasant personality, and despite her increasing confusion, she was well liked by the staff. She did not receive any special services, but she enjoyed weekly activities, such as bingo and sing-alongs, and was obviously content to sit near the nurses station much of the day, talking to staff and other patients and watching the goings on around the unit. Since staff expectations for her were not high, she felt more comfortable with herself than she had in her daughters home. The daughter also felt calmer and was able to express genuine affection for her mother during her frequent visits, Over a period of 5 years Mrs. Ps disease progressed to the point where she was bedridden, and it was no longer possible to communicate with her. However, it was clear that her life in the nursing home had been better than it would have been at her daughters home. Evaluating the experience with nursing home care of a dementia patient and of his or her family is difficult partly because the patient is often unable to formulate or express feelings and thoughts. Some families maybe relieved that they no longer have to provide 24-hour care, although many feel intense guilt about the placement. Research indi-

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Ch. 6Long-Term Care Services and Settings: An Introduction 219 cates that quality of life for caregivers who place a relative with dementia in a nursing home improves in some ways and not in others (16). These mixed findings and the difficulty of distinguishing between the debilitating effects of progressive dementias and the effects of poor care may preclude valid generalizations about the individual and family experiences. Access to Nursing Home Care It is clear from the large number of residents with dementia in nursing homes that such individuals are regularly admitted. At the same time, several problems continue to restrict access for some people with dementia: Nursing homes are reluctant to admit someone they believe will be difficult to care for or require disproportionate amounts of staff time. In States where Medicaid reimbursement levels are exceptionally low, nursing homes are reluctant to admit individuals who are likely to stay long enough to deplete their private funds and become eligible for Medicaid. Nursing homes are especially reluctant to admit Medicaid recipients who they believe will be difficult to care for and for whom the Medicaid reimbursement rate is low. (Case mix reimbursement systems that may reverse this disincentive are discussed in chs. 8 and 12.) In some States, Medicaid policies restrict eligibility for publicly funded nursing home care for persons with dementia. (These problems are discussed in detail in ch. 11.) The limited supply of nursing home beds in many States restricts access for all types of people and is a particularly severe problem in rural areas. When bed supply is limited, access to nursing home care for individuals with dementia may be restricted disproportionately for the reasons above. In general, the proportion of minority group residents in nursing homes is lower than would be expected from their proportion in the population as a whole. That may reflect barriers to access (e.g., lack of information, discrimination, cost, and geographic location of the facilities), personal choice, greater availability of informal home care, or a combination of all three (10,54,61,80). No information is available about the proportion of minority individuals with dementia in nursing homes. Short-term nursing home placement to provide respite for family caregivers is an important service but one that is frequently not available (28,68). Nursing homes may be reluctant to provide shortterm respite care because the costs of staff time and administrative procedures associated with admission and discharge are not adequately reimbursed at the prevailing daily rates. In addition, beds used for respite care may be vacant more frequently than other beds (46). Anecdotal evidence suggests that persons with dementia are often disoriented, agitated, and difficult to care for when first moved to any new setting. They may also be more likely to wander off during the first days after admission to a nursing home than they would be if they were accustomed to the facility. Such behaviors upset more permanent residents, particularly if they detract from staff attention to the old timers (32). For these reasons, nursing homes may be more reluctant to admit someone with dementia for short-term respite care than other types of patients. Research is needed to evaluate the frequency of these problems and to develop potential solutions. Board and Care Facilities Board and care facilities are nonmedical residences that provide room and board and 24-hour supervision, Some also provide personal care and a variety of other services. They differ from nursing homes in that they generally do not provide nursing care. They differ from boarding homes and congregate housing facilities because they generally provide 24-hour supervision. However, there are no clear-cut boundaries, and some facilities might be classified differently by different observers. Some large facilities provide board and care in some sections and nursing home care in others (59). Board and care facilities vary in size from adult foster care homes for one or two individuals, to personal care homes and group homes that may serve 3 to 10 or more, retirement homes and homes for the aged that serve up to 100 or more, 63-218 0 87 8 QL : 3

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220 Losing a Million Minds: Confronting the Tragedy of Alzheirners Disease and Other Dementias and large domiciliary care facilities that serve several hundred residents. The number and type of board and care facilities vary greatly in different States. In addition, one study identified more than 20 different names used for these facilities around the country (67). Board and care facilities also vary in the type of care they provide. In adult foster care homes, for example, one or several residents maybe cared for by one person who shops and cooks for them and assists with bathing and dressing. Care is informal, and the atmosphere may be homelike. In contrast, residents of large domiciliary care facilities are cared for by a staff with a formal daily schedule and structured activities. Between these extremes, tremendous variety exists in patterns of care. Board and care is sometimes referred to as residential care or community care, while nursing home care is called institutional care. The first two terms have positive connotations in contrast to the last one, but the positive image they convey may not apply to all board and care facilities. Although many small board and care facilities and some larger ones are homelike or residential, larger facilities are often just as institutional as any nursing home. Furthermore, some nursing homes are closely involved with their communities, while some board and care facilities are isolated. Thus the distinction between residential or community care in board and care facilities and institutional care in nursing homes can camouflage real differences in atmosphere and patterns of care in specific facilities. These terms are not used to differentiate board and care facilities from nursing homes in this report. Little is known about the services provided in board and care facilities. One study of small facilities (up to 13 residents) in Pennsylvania showed the following services were provided: laundry (97 percent); personal shopping (83 percent); cleaning a residents room (80 percent); transportation to social activities (77 percent); handling money (65 percent); supervising or administering medications (65 percent); assistance in bathing (37 percent); and assistance in dressing (26 percent) (75). Similar services are required by State programs that regulate some types of board and care facilities (67). No Federal Government agency has responsibility for collecting data on board and care facilities, and the definitions of these facilities used by different researchers vary significantly. Accurate national figures are therefore not available. Several sources estimate that there are at least 3 0 ) 000 board and care facilities in this country, providing beds for 350,000 or more people (67,98). Other sources estimate that if facilities that serve only one or two residents are included, there may be 100,000 or more (73). Still others believe that both these estimates are low and that, in fact, we have no idea how many such facilities there are (84). State and Federal programs pay for a significant portion of board and care. Although neither Medicare nor Medicaid covers these services, many board and care residents receive Federal SSI benefits. In 1983, 34 States and the District of Columbia provided supplemental payments for SSI recipients who lived in board and care facilities (100). VA provides board and care in 16 large domiciliary care facilities and pays for board and care in State Veterans Homes and small group homes. In addition, some States (20 in fiscal year 1984) use a portion of their Social Services Block Grant funds for adult foster care. Total spending for this purpose is not known because States are no longer required to report how they spend Block Grant Funds. In 1980, however, before Title XX funding was converted to the Social Services Block grant, Title XX funds constituted about 4 percent of all public funding for board and care, while SSI accounted for 73 percent and VA accounted for 23 percent (15). Residents With Dementia in Board and Care Facilities Much less is known about residents of board and care facilities than about residents of nursing homes, and no research has been reported on those with dementia. Studies have generally identified three groups of residents: the aged, mentally ill, and mentally retarded residents. One survey found that among 230,000 board and care residents for whom information was available, about 45 percent were elderly, 37 percent were mentally ill, 15 percent were mentally retarded, and the remainder were substance abusers or persons

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Ch. 6Long-Term Care Services and Settings: An Introduction 221 placed by the courts (67). The groups overlap, however, and some of the mentally ill and mentally retarded residents are elderly, and vice versa. Among the mentally ill and elderly residents are an unknown number of persons with dementia. One study of applicants for Pennsylvania facilities found that 36 percent of the mentally ill group and 38 percent of the elderly group needed supervision due to disorientation or memory impairment (74). Another study of board and care residents in seven states found that about one-third were disoriented or exhibited some memory impairment (17). However, no diagnoses are available to determine the cause of these conditions. Many residents of board and care facilities have psychiatric diagnoses or a history of psychiatric hospitalization. For example, 27 percent of those in board and care facilities in five States were found to have a history of psychiatric hospitalization (58). Among residents of VA board and care facilities, 55 percent of those in the large domiciliary care facilities and more than 70 percent of those in smaller homes had a primary diagnosis of psychiatric disorder (15). It is not known how many of the residents with psychiatric diagnoses or a history of psychiatric hospitalization actually have a dementing disorder. Quality of Care for Residents With Dementia Board and care facilities may be particularly appropriate care settings for many individuals with dementia because they provide protective supervision but are often less restrictive than nursing homes. Moreover, board and care usually costs one-third to one-half as much as nursing home care. However, many of these facilities provide inadequate care (17)85)90)) and residents with dementia are particularly unlikely to be able to report or resist poor care. Among board and care facilities identified in one national survey, about 85 percent were licensed by the States, but licensing requirements often focus on physical plant and fire and safety code regulations rather than quality of care. Furthermore, few States regularly inspect these facilities [67). (Quality assurance standards and inspection procedures for board and care facilities are discussed in ch. 10.) Although no research has been done on board and care specifically for those with dementia, there are reports of good care in some facilities that serve individuals with dementia along with others. For example, one study (108) described an adult foster care program in Hawaii that serves elderly clients, 38 percent of whom were significantly disoriented and 40 percent were incontinent of bowel and bladder. The study reported positive relationships between the foster families and the residents and improvements in self-care abilities and continence over time. In contrast, anecdotal evidence suggests that there are instances of very poor care: It Mrs. N, an 89-year-old black woman with no family, was brought to the hospital emergency room in a state of severe malnutrition and dehydration. She was confused on admission and remained confused even after her nutritional status had improved with treatment. investigation by the local Adult Protective Services Unit revealed that Mrs. N and two other elderly woman with dementia had been living for an unknown period in a filthy apartment, cared for by a man who took their SSI checks every month, visited them daily during the week and brought them food, but apparently left them entirely alone on weekends. None of the women had relatives who visited them, and while little specific information could be obtained about their care, their physical condition suggested that they had received little care and little to eat. is not known how often such situations occur. When board and care is provided by one person, changes in that individuals physical or mental health can jeopardize the safety and continuity of care for residents, just as changes in a family caregivers physical or mental health can jeopardize the care of a person with dementia at home. For many board and care facilities, there is no established procedure for notifying a relative of the resident or another responsible person when such problems arise. Access to Board and Care Facilities Access to board and care facilities for all kinds of people is limited by lack of information about them. Although some facilities, especially large retirement homes and VA domiciliary care facil-

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222 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias ities, are well known in their communities, others are largely unknown, even to health care and social service providers. The OTA survey of family caregivers found that 55 percent did not know whether board and care was available in their areaa larger proportion than those who did not know about the availability of other long-term care services (122). Some States have case management programs that place people in board and care facilities, and some continue to monitor resident adjustment after placement (59). However, these programs are often limited to certain types of facilities and certain types of people, particularly mentally retarded individuals and those who receive public funding. The cost of board and care may also limit access for all kinds of people, including those with dementia. Although board and care is considerably less expensive than nursing home care, it often costs more than the individuals social security or SSI benefit and any State SSI supplement (83). In some localities, there are no board and care facilities. For example, one survey of six States identified several rural counties without any such facilities (76). Lack of SSI supplements for board and care in some States and extremely low SSI supplements in other States discourage the development of these facilities, thus limiting access to this form of care for all types of people (67,85). For someone with dementia, access may be restricted because providers sometimes refuse to accept residents with behavioral problems or incontinence. The six-State survey cited above found that 35 percent of board and care operators refused to admit people with behavioral problems, night wanderers, and people with bowel or bladder problems (31). Little is known about minority group access to or use of board and care facilities. Some research suggests that minorities may be excluded from specific kinds of facilities. For example, few black people live in homes for the aged (12). In contrast, many board and care providers, especially in small facilities, are black, at least in some localities. In the Pennsylvania domiciliary care program, 30 percent of the providers but only 13 percent of the residents were black (76). No information is available about access to or use of board and care facilities by Hispanic elderly or other minorities. Home Care Home care services include medical, social, and supportive services provided in someones home. They range from complex, technologically sophisticated interventions, such as the administration of intravenous antibiotics and nutritional support, to relatively simple interventions, such as homedelivered meals. Between these extremes are services such as skilled nursing care, physical therapy, speech therapy, occupational therapy, home health aide, personal care, homemaker, paid home companion, and chore services. (These services were defined earlier in table 6-l.) Family caregivers who responded to the 1985 OTA survey said that each home care service they were asked about was important for their family member with dementia: l l l 96 percent said that a paid companion who can come to the home a few hours each week to give caregivers a rest is essential, very important, or important; 94 percent said that home health aide services-that is, a person paid to provide personal care such as bathing, dressing, or feedingare essential, very important, or important; 93 percent said that a paid companion who can come to the home and provide overnight care is essential, very important, or important; and 87 percent said that visiting nurse services-a registered nurse to provide nursing care are essential, very important, or important (122). Unfortunately for persons with dementia and their families, some of these services do not correspond to the services usually funded or provided by public programs. Although some families can pay privately for home care services, the long duration of dementing illnesses and thus the long period during which services are needed mean that families must often turn to publicly funded services or do without.

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Ch. 6Long-Term Care Services and Settings: An Introduction 223 Federal funding for home care is provided by Medicare, Medicaid, the Social Services Block Grant, Title III of the Older Americans Act, and VA. Medicare is the largest payer for home care, and Medicare expenditures for home care have grown rapidly during the past 10 years. However, in 1983 they still constituted only 2.7 percent of Medicare spending (88). Medicare is a medical insurance program, and its coverage of home care is limited to the following medically related services: l l l l l part-time or intermittent skilled nursing care; physical therapy, speech therapy, and occupational therapy; medical social services provided under the direction of a physician; medical supplies and equipment (other than medicines); and part-time or intermittent home health aide services. Medicare services must be prescribed by a physician and provided by an agency certified to participate in the program, of which there were 5,237 in 1985 (35). Federal regulations do not restrict the number of home health care visits that can be covered and the period of time over which they may be received, but because of the requirement that Medicare-covered home health care services must be intermittent, daily visits for more than 2 to 3 weeks require additional documentation by a physician. Home care providers complain that some Medicare intermediaries who handle reimbursement routinely deny payment for daily visits that extend for more than 2 to 3 weeks and that the intermediaries are erratic in their reimbursement decisions. Testifying before the Subcommit tee on Health of the Senate Finance Committee, the director of a home health care agency stated: A visiting nurse association in the Southwest was denied all visits to an 80-year-old Alzheimers disease victim for March and April after being reimbursed for daily visits in previous months. Then the intermediary turned around after denying these two months, and paid for two additional months of daily visits there is no consistency at all in those types of decisions. The patient had [decubitus] ulcers. I have the pictures here I would like to enter these pictures in with our testimony in the record. [Ten pictures of severe decubitus ulcers are submitted.] You cannot look at these photos and not see that this man had the need for the daily visits; and the intermediary looked at the pictures and denied the visits anyway (103). For many persons with dementia, home health aide services are the most useful Medicare-covered home care service. Covered services include assistance with medications and exercise; personal care, such as bathing, dressing, and feeding; and homemaker services when these can be shown to prevent or postpone placement in a nursing home or other institutional setting. To be eligible, however, the patient must also need skilled nursing care, physical therapy, or speech therapya condition that many with dementia do not meet. Using a home health aide as a paid companion-one of the services considered essential by many family caregiversis not legitimately covered by Medicare. Studies by the General Accounting Office and the Health Care Financing Administration indicate that Medicare reimbursement for one-fourth to one-third of all home health care claims was or should have been deniedsometimes because the individual was not eligible for such services, according to program regulations, but more often because the person received too many visits (91,109). It is not known how many individuals with dementia actually receive any Medicarecovered home health care services or how many receive services for which reimbursement is later denied. Statistical analysis of the characteristics of a national sample of people receiving Medicare-covered home health care services indicates that six clinically distinct groups can be identified (56). Four of the groups generally do not include cognitively impaired people: 1. people with acute medical problems such as cancer; 2. people with hip or other fractures; 3. people with acute and chronic medical problems and limitations in self-care abilities; and 4. people with severe circulatory and respiratory problems.

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224 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias The other two groups, which do include cognitively impaired people, are: 5. people who have many chronic medical conditions, including senility and stroke, but few acute or severe conditions and few limitations in self-care abilities; and 6. people with severe neurological impairments, including senility and stroke, and significant difficulty in self-care abilities. Among all six groups, group 5 received the lowest amount of Medicare reimbursement for home health care services, while group 6 received the highest amount an average of six times as much. The primary differences between the two groups are the absence or presence of acute medical care problems and limitations in self-care abilities. These findings suggest that persons with dementia and with acute medical problems and severe limitations in self-care abilities may receive substantial Medicare reimbursement for home health care services, and that those with fewer acute medical problems and fewer limitations in self -care abilities probably receive much less. The latter group may be among home care recipients for whom reimbursement is frequently denied. Medicaid also covers home health care services, although in 1983 they accounted for less than 2 percent of all spending in the program (88). Within Federal guidelines, States determine what services their Medicaid programs cover, and tremendous variation exists. Although some States have legislative, regulatory, and administrative policies that make a range of services available to Medicaideligible people, others do not (14). Federal regulations require State Medicaid programs to cover skilled nursing care and home health aide services. Personal care is optional; as of 1983, only 25 States and the District of Columbia covered it (95). Even so, three-quarters of Medicaid home care expenditures were for personal care (18). All Medicaid-covered home care services must be ordered by a physician, and home health aide and personal care services must be supervised by a licensed nurse. In many States, home health care services covered by Medicaid match the needs of someone with dementia more closely than those covered by Medicare; however, only people who meet Medicaid financial eligibility criteria can receive Medicaid-covered services. The criteria include limits on income and assets that vary among States but are low everywhere and extremely low in some States. As a result, even where Medicaid covers the home care services for a person with dementia, the allowable income and asset levels are so low that it is difficult to support the person in the community. When a spouse is involved, he or she must also live at these low income and asset levels (see ch. 11 for further discussion of this problem), In 1981, Congress authorized the Medicaid 2176 waiver program to allow States increased flexibility in the home care services they provide. Under this program, States may provide home health aide, homemaker, personal care, and respite services as long as these services are said to prevent nursing home placement. States may target the expanded services to specific areas and to certain groups of people instead of making them available statewide and to all Medicaid-eligible individuals. As of April 1985, 95 waiver applications had been approved: 50 include services for the aged and disabled and 4 including services for the mentally ill. Among waiver programs for the aged and disabled, 11 included home health aide services, 26 included homemaker services, 18 provided personal care, and 24 provided respite care (87). The number of persons with dementia who receive services through these programs is not known. Since recipients must meet Medicaid financial eligibility requirements, however, services are generally available only to those with low income and assets. In some States, individuals with income up to three times the SSI level in the community are eligible for 2176 waiver benefits, but they must have medical expenses higher than the difference between their income and the SSI benefit level (see ch. 11 for a description of the 2176 waiver program). Funding for home care services through the Social Services Block Grant and Title III of the older Americans Act is administered at the State and local levels, and little information is available about services provided and the financial or other factors used to determine eligibility. Although many

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Ch. 6Long-Term Care Services and Settings: An Introduction l 225 States use these funds to provide personal care, homemaker, and chore services not covered by Medicare or Medicaid, they are generally insufficient to meet demonstrated need (27,28,88). Again, the number of persons with dementia who receive home care services through these funding sources is not known. VA provides relatively little home care compared with the amount of hospital, nursing home, and board and care services it provides. Only 30 of 172 VA Medical Centers provide home care services, and veterans who live far from these centers do not have access to VA home care. Estimates for fiscal year 1985 indicated that about 15,000 veterans would receive home care, but the need for these services is much greater. For example, VA figures indicate that 460,000 veterans will need home care services by 1990 (1 I 1). No breakdown of these figures for veterans with dementia is available. Persons With Dementia Receiving Home Care Services As indicated, the number of persons with dementia who receive federally funded home care services is not known, and OTA is unaware of any national or State data on the number who receive any publicly or privately funded home care services, The eligibility criteria for relevant Federal programs discourage identification of this group by focusing on different types of needs: medical, skilled nursing, and health-related needs (Medicare, Medicaid, VA); social service needs (Social Services Block Grant); or age-related needs (Title III of the Older Americans Act). Although several national, State, and community surveys include measures of cognitive status and information about service utilization (52), these data have not yet been analyzed to determine the number or proportion of persons with dementia who receive home care services or, conversely, the proportion of all home care recipients who have a dementing disorder. Despite this lack of information, it is clear that individuals with dementia constitute a significant proportion of home care recipients, at least in some programs. For example, one study of 50 people who received home care services following hospitalization in Little Rock, Arkansas, found that 48 percent had mild or moderate cognitive impairments, and 10 percent were severely impaired (24). A persons mental status may affect the efficacy and chance for success of formal home care services. National data indicate that mental status is one of the most important predictors of nursing home placement. For example, analysis of data from the 1977 Health Interview Survey and the 1977 National Nursing Home Survey showed that 66 percent of elderly persons with diagnoses of mental illness (including cognitive impairments and functional mental illnesses) are in nursing homes. By contrast, only 22 percent of those with cancer, digestive, metabolic, or blood diseases and a smaller proportion of those with other diagnoses are in nursing homes (119). Similarly, hospital data suggest that cognitively impaired persons are much more likely than other patients to be discharged to nursing homes (20,71). These findings imply that persons with dementia are more difficult to maintain at home than others who need long-term care. They also raise questions about whether formal home care services can be effective in keeping someone with dementia at home and whether it is more difficult to arrange home care services for such a person. OTA is not aware of research that addresses these questions. One characteristic that limits the usefulness of home care services for some persons with dementia is their need for 24-hour supervision. Although not unique to this group, this need is probably universal among persons with dementia. While some families can provide 24-hour supervision, persons with dementia who have no family cannot be safely maintained at home without 24-hour formal carea service that is seldom available. One home health aide who works for a Medicare-certified home health care agency has 11 elderly clients, most of whom live alone. She visits six of them daily and the others on alternate days, to help with bathing and dressing, andfor those who live aloneshopping, cooking, and other housekeeping chores. Agency policy is that the home health aides do not visit clients who live in rural areas on days when the county schools are closed because of snow. The aides have been told that their services are intended to be part-time and intermittent, as required by Medicare regulations and

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226 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias Photo credit: ADRDA and Peter Carrel, Photosynthesis Productions, Inc. Some families are able to provide 24-hour care for a relative with dementia. that their clients are not supposed to need 24-hour care. On this snow day, however, the aide decides to visit one of her clients anyway. The client is confused, and the aide is always worried about how she will manage between the aides daily visits. In good conscience, the aide cannot imagine failing to check in on the woman. It is not the aides decision whether or when the woman should be placed in a nursing home, and in fact her instructions do not mention the womans increasing confusion-only her need for assistance with bathing, dressing, shopping, and cooking. Data from the 1979 Home Care Supplement to the National Health Interview Survey indicate that individuals who need supervision plus assistance in activities of daily living and medical care use formal home care services more often than those who need only assistance in activities of daily living and medical care (79). Further, some 56 percent of those 65 or older who needed home care also needed supervision all or most of the time (78). However, it is now known how many of these people had a dementing disorder. Analysis of these data in terms of the cognitive status of home care recipients might clarify the relationship between dementia, the need for 24-hour supervision, and the use of formal home care services. For many years it has been believed that home care services can help people who need long-term care remain in their homes and avoid nursing home placement, thus reducing expenditures for nursing home care, Many studies have tested this hypothesis, and although some are methodologically flawed, analysis of the findings indicates that home care services do not, in general, substitute for nursing home care. Nor are home care services generally less expensive than nursing home care, although they often improve the quality of life for those who remain at home (36,93,117). Analysis of the reasons for these unexpected results is beyond the scope of this assessment. However, it appears that none of the studies considered the effect of the individuals cognitive status on whether home care services prevent institutionalization. One recent study indicated that caregiver characteristics and caregiver well-being are more important predictors of placing someone with dementia in a nursing home than any characteristic of the person (16). However, the persons cognitive status could affect caregiver wellbeing or, alternatively, the emotional or behavioral characteristics associated with dementia could be intervening variables that affect caregiver wellbeing and thus decisions about placement. Further research is needed on the factors that predict institutionalization of persons with dementia and therefore the potential impact of home care services on such decisions. Quality of Home Care Services for Persons With Dementia Several problems limit the quality of home care services for persons with dementia: l l The services most neededpaid companion, homemaker, personal care, and 24-hour supervision-are frequently not available. Home care services that can be used for respite care are particularly difficult to find (28,40,68). Many of the people who provide home care services are not trained to work with individuals with dementia (68), and they may create more problems for the patient and the primary caregiver than they solve.

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Ch. 6Long-Term Care Services and Settings: An Introduction 227 l There are few standards or procedures for monitoring quality of home care services for anyone, particularly someone with dementia, In addition, different expectations about the role of the family and the role of the paid home care worker can cause problems. Although there may be little disagreement about the role and responsibilities of a nurse, physical therapist, occupational therapist, or speech therapist who provides home health care, the responsibilities of a home health aide who provides personal care and homemaker services may be difficult to distinguish from those of the family. This lack of clear roles and responsibilities can lead to tension. Home care workers sent out to provide home health care may become upset by a familys requests or demands for services that do not match the workers job description. Likewise, family caregivers may become upset when services they want are not provided (41). Families and home care workers can also disagree about how much help the patient needs (32). Close supervision of home care workers by the agency is virtually impossible, and families complain that some of these employees do not do their jobs. For example, one woman told the Massachusetts Governors Committee on Alzheimers Disease about a home health aide who seldom showed upon time, and when she finally arrived did little more than watch the woman care for her mother (27). Anecdotal reports indicate that some home care workers do not show up at all or merely sit and watch television. Theft, neglect, and exploitation of cognitively impaired people by home care workers have also been reported. Although it is not known how often such problems occur, they are clearly a cause of concern, especially for families who live a considerable distance from the person receiving the care (47). Access to Home Care Services In many areas, access to formal home care services by persons with dementia can be limited by lack of any home care services, lack of appropriate services, lack of funding, and fragmentation of the service delivery system. Home care services of all kinds are particularly difficult to obtain in rural areas. National data indicate that elderly people who need home care services do without them more frequently in farm areas than in urban, suburban, or rural, nonfarm areas. At the level of ADL impairment at which informal caregiving is usually augmented by formal home care services, almost twice as many people do without formal services in farm areas than in all other geographic locations (79). These findings are not specific for persons with dementia, but the Kansas Alzheimers and Related Diseases Task Force has documented the difficulty of finding home care services for such persons in rural areas of the state (40). Problems in obtaining appropriate home care services have been discussed throughout this section. One overriding problem is the emphasis on medical and skilled nursing services in Medicare, Medicaid, and VA home health care programs, as opposed to the personal care, supervision, and social services most often needed by persons with dementia. A second problem that has received almost no attention concerns home care services for different ethnic, cultural, and socioeconomic groups. When services are provided in the home, differences among groups and individuals in lifestyle, expectations, attitudes, and patterns of interpersonal behavior are particularly salient and can affect acceptance of the services, the level of trust and cooperation that can be achieved between the paid home care worker and the patient and family, and the overall efficacy of the service. Adaptations of home care services for different ethnic, cultural, and socioeconomic groups are needed. The cost of services can also limit access, and many home care services are expensive. one woman told the Kansas Alzheimers and Related Diseases Task Force: I was told that I might be able to get someone in for an hour a daythat might be long enough to bathe and dress my husband. When I asked how much I was told it would cost $4o an hour from the minute they left their office until they returned (4o). Some agencies provide home care services on a sliding fee basis, but the clients share of the cost may still be high (64). As a result, some families hire maids to provide home care services. One

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228 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias study showed that 41 percent of caregivers of persons with Alzheimers disease hired private maids or sitters because it was cheaper than paying for home care services from a home health care agency. Most of the other caregivers did not use any home care services (25). A final and serious problem that affects access to home care services is the complexity and fragmentation of the service delivery system. Although in some localities there are no agencies to provide home care services, in other areas there are many such agencies, each providing a variety of services with differing eligibility requirements and reimbursement procedures (114). The complexity of Federal regulations on what home care services are covered, who can receive them, and who can provide them is compounded by interpretations of Federal Medicare regulations by Medicare intermediaries; State legislation, regulations, and administrative policies that determine Medicaid coverage and eligibility requirements; and State and local regulatory and administrative decisions about the use of Social Service Block Grant and Title III funds. In addition, some services are available through State and local programs unrelated to Federal funding sources, or through private nonprofit groups, each of which has its own eligibility, coverage, and reimbursement guidelines. Several States have created programs to pool and administer funds that are available for home care. Examples are the Massachusetts Home Care Corporations and the Maryland Gateway 11 program, Both provide home health aide, personal care, and homemaker services using more liberal and flexible eligibility criteria than are applied elsewhere. The primary problem they face is inadequate funding to meet the home care needs they identify (27,28). Thus even these programs are frequently unable to provide appropriate home care services for persons with dementia. Adult Day Care Centers Adult day care centers provide a range of health, mental health, and social services for physically, emotionally, and cognitively impaired and socially isolated people. The centers all provide some com mon services, but they differ in their emphasis and the clients they serve, Several types have been identified in the literature (33)118). Some emphasize medical and rehabilitative services, such as physical, occupational, and speech therapy, and serve people who are recovering from physical illnesses such as stroke. Other centers emphasize personal care, supervision, socialization, and activities, and serve mentally retarded and developmentally disabled adults or frail elderly persons and those with dementia. A third type emphasizes mental health services, supervision, socialization, and recreation, and serves primarily mentally ill people, some of whom have been discharged from public and private mental hospitals. The three types overlap, and some analysts have questioned how closely this typology reflects real differences between existing centers (8). Before 1972, there were fewer than 10 nonpsychiatric adult day care centers in the United States. By 1977, that number had grown to 300, and by 1982-83, there were between 700 and 1,000 centers serving 15,000 to 20,000 people (33,55,65). A 1985-86 survey sponsored by the National Institute of Adult Daycare (NIAD) received responses from 847 centers, and the report suggests that 1,200 is a conservative estimate of the number of existing centers (8). Unlike nursing homes and home health care agencies, adult day care centers have developed largely without Federal regulation. As a result, they vary greatly in physical setting, clientele, staffing, mode of operation, and services provided. To some extent, this diversity reflects local needs and resources (7). Adult day care centers may be located in buildings used solely by the center or in hospitals, nursing homes, senior centers, churches, schools, community centers, clinics, housing for the elderly, private homes, or life care communities, A few are open 7 days a week, but most are open 5 days a week (7). Many clients do not attend every day, however; one study of four centers found that the average days of attendance ranged from 48 to 114 days per person per year (82). Although the services provided in different centers vary, as mentioned earlier, many centers have similar goalsto avoid premature or inappropriate institu-

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Ch. 6Long-Term Care Services and Settings: An Introduction 229 tional placement, to maximize client functioning, to provide respite for family caregivers, and to provide supportive services in the community (8). According to the NIAD survey, the average cost of adult day care is $27 to $31 a day (8). However, some programs cost significantly more (65). Medicare does not cover adult day care per se, but may cover medical or skilled nursing care and physical and speech therapy provided for adult day care clients. Adult day care is an optional service under Medicaid, and some states cover it either as a separate service or as part of clinic or outpatient services (15). Coverage is usually limited to centers that provide medical and rehabilitative services as opposed to those that emphasize personal care, supervision, and activities (45). Financial eligibility criteria further limit Medicaid-covered adult day care to persons with low income and assets. Nevertheless, the NIAD survey found that Medicaid and participant fees were the two main sources of funding for adult day care centers (8). Adult day care is an allowable service under the Medicaid 2176 waiver program, and as of April 1985 it was a part of 42 of the 95 approved 2176 waiver proposals for the aged and disabled, 14 for the mentally retarded and developmentally disabled, and 2 for the mentally ill (87). Some States (29 in fiscal year 1984) use Social Service Block Grant funds to support clients in adult day care (104), and some use funds allocated under Title 111 of the Older Americans Act. Other state and local funds and contributions from United Way organizations, churches, synagogues, service clubs, and other charity groups also support these centers (45). As of 1985, the VA provided adult day care at five medical centers. Veterans with service-connected disabilities are eligible for adult day care for an indefinite period, but those with non-service-connected disabilities are limited to 6 months of this care (43). Persons With Dementia in Adult Day Care Centers A 1984 survey of adult day care centers found that about 45 percent served persons with dementia (55), The recent NIAD survey did not ask specificially about dementia, but it did ask about characteristics of clients that may be related to dementia, such as supervision needs and incontinence. The survey found that about 45 percent of clients require supervision, and about 20 percent require constant supervision. In addition, about 8 percent are incontinent to the degree that they require changing during the attendance day (8). Many individuals in each of these categories may have dementing disorders. Although the majority of adult day care centers continue to serve a mixed population, an increasing number are specializing in services for specific client groups (65). Specialization may evolve as providers encounter problems in serving clients with differing needs and capabilities or may occur in response to community needs (23). Adult day care centers designed specifically for persons with dementia are discussed in chapter 7. The Alzheimers Disease and Related Disorders Association (ADRDA), families, and many health care and social service providers are enthusiastic about the role of adult day care in the treatment of persons with dementia because they believe it can do three things: improve quality of life for these persons; provide respite for family caregivers; and perhaps postpone the need for nursing home care in some cases. The efficacy of adult day care in attaining these objectives for persons with dementia is discussed in chapter 7, Research not specifically focused on persons with dementia indicates that adult day care programs can and do serve quite severely debilitated persons. For example, one study compared clients in an adult day care center and residents of a nursing home and found that the adult day care clients were more impaired in physical and mental health and self-care abilities than the nursing home residents, but the latter had more limited social and financial resources (166). Although these findings indicate that severely debilitated clients can be maintained in adult day care centers, it is unclear whether adult day care is a substitute for nursing home care. Analysis of seven studies that addressed this question indicates that these centers were generally serving a different group of people than those who enter nursing homes, that the cost of adult day care was

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230 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias not less than the cost of nursing home care, but that like home care clients, people in adult day care had higher morale than those in nursing homes (33). Access to Adult Day Care Lack of a stable funding source for adult day care is a pervasive problem that limits access for individual clients and discourages the development of new centers (27,33). As discussed, many public programs and private groups provide some funding for adult day care. Still, among all longterm care services, adult day care is one of the two most commonly associated with client fees for service (the other is homemaker services) (15). At $27 to $31 a day, adult day care is clearly too expensive for most clients and families to afford on a regular basis. Lack of centers also restricts access. Rural areas are particularly unlikely to have such centers because of low population density and lengthy travel time for clients. Innovative models of service delivery based on the satellite site concept have been developed (30), but OTA is not aware of any research that evaluates their effectiveness for persons with dementia. NIAD survey data indicate that about half the centers that responded serve some black clients, and in these centers an average of 15 percent of all clients are black. About one-fourth of all centers said they serve some Hispanics, and in those centers 2 to 3 percent of the clients are Hispanic. Ten percent of centers said they serve some Native Americans, and 12 percent said they serve some Asians and Pacific Islanders (8). No information is available about why some centers serve no minority group clients. A final factor that restricts access to adult day care is the admission and discharge policies of some centers. The NIAD survey found that many centers determine eligibility on a case-by-case basis. However, a minority reported that they deny admission to people who are incontinent, disruptive, combative, psychotic, too confused, or in need of constant supervision [8). Clearly, many persons with dementia would not be admitted to these centers. Community Mental Health Centers Community mental health centers (CMHCs) are agencies that provide a range of mental health services to persons of all ages, primarily on an outpatient basis, although some also provide shortterm inpatient care. CMHCs are not usually included in discussions of long-term care services. They are included here because they are local sites of mental health expertisean element clearly lacking in the care provided by most long-term care facilities and agencies serving persons with dementia. Elderly people, the group that includes the vast majority of persons with dementia, have generally been underserved by CMHCs. However, some CMHC services regularly provided to other age groups and patient types, such as assessment, counseling, and support groups for patients and families, are needed by persons with dementia and not available in many communities. Outpatient mental health centers have existed in this country for a long time, but the Federal program that created CMHCs was initiated in 1963 with passage of the Community Mental Health Services Act and subsequent authorization of Federal funding for the centers, Special services for elderly people were not required in the original act, and few such services were provided. However, amendments to the act passed in 1975 and 1978 mandated increased services for that group. In 1980, legislation was passed to provide additional funding for CMHCs with special programs for the elderly, but that legislation was never implemented because direct Federal funding for CMHCs and other programs was replaced by the Alcohol and Drug Abuse and Mental Health Services Block Grant, to be administered by the states. Federal funding for the block grant in its first year was 25 percent lower than combined Federal funding for CMHCs and substance abuse programs in the previous year (3,62,92). No information is available about the number or proportion of persons with dementia served by CMHCs. The proportion of elderly persons among all clients served by these agencies increased from 3.4 percent in 1971 to 6 percent in 1982still far below the proportion of elderly people in the population as a whole. The proportion of elderly people served by CMHCs did not change

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Ch. 6Long-Term Care Services and Settings: An Introduction 231 from 1981 to 1984, but many CMHCs report a decrease in special programs for elderly people since 1981 (3,5). Not all CMHCs that provide special services for elderly people also have special services for persons with dementia, but one study indicates that the two are often associated (51). The study found that CMHCs with special services for elderly people are five times more likely than other CHMCs to provide services for individuals with Alzheimers disease and their families. Those that also had staff trained to provide services for persons with dementia were more than 8 times as likely to provide such services. And they were also more likely to provide services in satellite sites, such as nursing homes, senior centers, community residential facilities, or in the patients home. Thus reported cutbacks in special CMHC programs for elderly people since 1981 could indicate that services for persons with dementia have also been cut back and that they are less frequently available in settings where such persons are usually seen and treated. Interestingly, CMHCs responding to the study cited above (51) reported that their most important need was for information about memory and cognitive problems in elderly people (50). The change to block grant funding and the decrease in Federal funding for CMHCs resulted in reduced staff and increased caseloads in many centers, a decrease in the number of psychiatrists employed in CMHCs, and an increase in client fees (39,62). These changes may have affected the availability and quality of services for persons with dementia. outpatient mental health services for persons with dementia could be provided by mental health professionals who are in private practice, including psychiatrists, clinical psychologists, psychiatric social workers, and psychiatric nurses, but research indicates that such services are seldom used by these patients. For example, the Epidemiologic Catchment Area survey in Baltimore found that no one with cognitive impairment who was over 65 had seen any mental health specialist in the preceding 6 months (26). A 1978 study found that fewer than 3 percent of the patients of mental health professionals in private practice were over 65 (107), and although this proportion has probably increased in recent years, relatively few such professionals treat elderly persons with dementia. The original intent of the Federal legislation that created CHMCs was that those centers would provide mental health services and also would work with other community agencies and private practitioners to create a coordinated system of mental health care at the local level. This latter aspect has been particularly affected by decreases in funding, with the result that in many localities mental health services for all kinds of people are now more fragmented (39). Despite funding cutbacks, some CMHCs do provide comprehensive mental health services for persons with dementia and their families and outreach to facilities and agencies in the community where such persons are cared for (4,63). Analysis of how these services are organized and funded could provide a model of service delivery that might be duplicated in other CMHCs. SERVICE DELIVERY SYSTEM S Service delivery systems are methods for matchcare options, and followup to monitor the indiing the needs of an individual with appropriate viduals adjustment and ensure that services are services. Some are relatively simple, such as proprovided regularly. Still others are based on agreeviding the person or family with a list of commu ment among community agencies to designate a nity agencies that they can use to select the serv single agency as the entry point for long-term care ices they need. Others involve comprehensive services or to use a common assessment instru assessment of an individuals needs, counseling ment to evaluate client needs. Another type of with the person and family to evaluate different service delivery system is the social/Health Main-

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232 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias tenance Organization (see ch. 12) and similar systems that provide a range of long-term care services through a single agency or program. Each of these methods and many others are being used for persons with dementia and others who need long-term care. Although some have been analyzed extensively in terms of their effect on access, appropriateness, and cost of long-term care services for all kinds of people, OTA is not aware of any research that compares alternate methods of service delivery for persons with dementia. The need for a service delivery system arises in part from the fragmentation of long-term care services at the community level and the complexity of Federal, State, and local programs that provide and fund such services. The three systems that provide services for persons with dementia the medical or physical care system, the aging services system, and the mental health systemare generally disconnected. Gaps and overlapping services within each and between systems are common, and providers in one system are often unaware of services in the other two. In addition to these problems, some individuals and families need assistance in evaluating their needs before they can select appropriate services. Others need counseling and emotional support to work through feelings of sadness, anger, and guilt associated with the patients condition and care needs before they can evaluate long-term care options rationally or follow through on decisions about institutional placement or continued care at home. Although the same problems affect everyone who needs long-term care, several characteristics may intensify the problems for persons with dementia and their families: l l l persons with dementia frequently do not understand their condition and care needs and may refuse services they need; persons with dementia frequently lack the ability to evaluate care options, and family members or others must make important decisions for them (nursing home placement, sale of a home, etc.); there is no generally accepted assessment instrument to measure their care needs; l l there is no generally accepted method of evaluating their capacity to make decisions; and they often come to the attention of health care and social service providers and community agencies only when their need for services is desperate, and the assessment/referral/decisionmaking process frequently takes place in an atmosphere of crisis. The need for improving in the service delivery system for persons with dementia is evident from the responses to the OTA survey of family caregivers. Many respondents did not know whether home care, board and care, respite, adult day care, or nursing home services were available. Likewise, almost half reported that they had difficulty finding a doctor who could adequately care for the person with dementia. When asked about the most important services, families identified the need for assistance in locating people or organizations that provide care and for help in applying for Medicaid, Social Security Disability benefits, SSI, and so on as the second and third most essential (following only the need for a paid companion to give caregivers a rest) (122). The reports of several State Alzheimers disease task forces stress the need for good information and referral systems (27,28)40). The experience of the Massachusetts Governors Committee on Alzheimers Disease is instructive: At the beginning of our examination of available community services, one member was assigned the task of calling facilities on a random list and asking if they had specialized services for Alzheimers patients. Without exception, the caller was told that such specialized services existed. When questioned more specifically) most facilities failed to demonstrate any special capability to assist the Alzheimers client. In fact, in some cases, facilities which initially stated that they had specialized units or services were ill-prepared to assist an Alzheimers patient or family member (27). Many different agencies and community service providers are involved in matching the needs of persons with dementia to available services. Hospitals play a major role in service delivery, sometimes because no other agency has been available to serve this function. Anecdotal evidence

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Ch. 6Long-Term Care Services and Settings: An Introduction l 233 indicates that persons with dementia are frequently admitted to a hospital when family caregivers are no longer able to manage them, or when their ability to function independently has deteriorated to such a low level that neighbors or others insist that something must be done. In such situations, the person may or may not have an acute medical condition, but the primary (although sometimes unspoken) reason for hospitalization is the need for a long-term care plan. Hospital discharge planning units, often staffed by social workers, are primarily responsible for developing a plan of care for patients who need long-term institutional care or formal services at home. This process which may involve assessment of the patients physical, emotional, and cognitive status and social supports; consultation with the patient, the family, the doctor, nurses, and others; and location of appropriate services and funding-can be time-consuming. In the past, patients sometimes remained in the hospital for prolonged periods while a discharge plan was developed. Now, however, the Medicare Prospective Payment System and other public and private programs that create incentives for shorter stays are reducing the time available for discharge planning in hospitals. Analysis of the impact of these changes on discharge planning for persons with dementia is needed. Physicians, other health care providers, staff in agencies that serve elderly and disabled people, CHAPTER 6 1. Ablowitz, M., Pairing Rational and Demented Patients in Long-Term Care Facilities (letter to the editor), Journal of the American Geriatrics Society 31:627, 1983. 2. Abt Associates, Inc., Analysis of the Maryland Patient Assessment System With Emphasis on the Needs of Behavior Problem Residents, Washington, DC, Jan. 11, 1985. 3. Action Committee To Implement the Mental Health Recommendations of the 1981 White House Conference on Aging, Mental Health Services for the Elderly: Report on a Survewy of Communituv Mental Health Centers, Vol. 1, Washington, DC, 1984. 4. Action Committee To Implement the Mental Health Recommendations of the 1981 White House Conand many others are also involved in referring persons with dementia to long-term care services. Staff in adult day care centers that serve persons with dementia and ADRDA staff and support groups frequently provide information about available services and assistance with decisionmak ing for families of these patients. Evaluation of alternate methods of service delivery for persons with dementia is beyond the scope of this OTA assessment. Some of the questions that need to be answered are: l l l Which methods of service delivery are most effective? Are they are best served by a delivery system that focuses on persons with dementia or by a system that serves all persons who need long-term care? What are the appropriate roles of families, voluntary caregiver support groups, and public and private agencies in the service delivery system? Some answers may be found on analysis of data collected for the National Channeling Demonstration project a large-scale study of two models of service delivery funded by the U.S. Department of Health and Human Servicesand other studies of service delivery systems (52). Other answers must await the outcome of new studies and demonstration projects. REFERENCE S 5. 6. 7, 8, ference on Aging, Mental Health Services for the Elder~v: Report on a Survey of Community Mental Health Centers, vol. H, Washington, DC, 1984. Action Committee To Implement the Mental Health Recommendations of the 1981 White House Conference on Aging, Mental Health Sert~ices for the Elderly: Report on a Sur\q/ of Communit y Mental Heahh Centers, Vol. 111, Washington, DC, 1986. Baldwin, B., RN, consultant, Crofton, MD, personal communication, May 18, 1986. Behren, R. V., Adult Day Care: Progress, Problems, and Promise, Perspecti\7e on A@ng 14(6):539, 1985. Behren, R. V., Adult Day Care in America: Preliminary Report of the Results of the National In-

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234 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias stitute of Adult Daycare/National Council on Aging Survey, 1985 -86, Washington, DC, July 1986. 9. Brody, E. M., The Social Aspects of Nursing Home 10 11 Care, The Teaching Nursing Home, E.L. Schneider, C,J. Wendland, A.W. Zimmer, et al. (eds.) (New York, NY: Raven Press, 1985). Brody, J. A., and Foley, D. J,, Epidemiologic Considerations, The Teaching Nursing Home, E.L. Schneider, C.J. Wendland, A.W. Zimmer, et al. (eds.) (New York, NY: Raven Press, 1985). Brody, S.J., and Magel, J. S., DRG: The Second Revolution in Health Care for the Elderly, Journal of the American Geriatrics Society 32:676-679, 1984. 12. Butler, R. N., and Lewis, M. I., Aging and Mental Health (St. Louis, MO: C.V. Mosby Co., 1982). 13. CameIi, S., Pairing Rational and Demented Patients in Long-Term Care Facilities, Continued (letter to the editor), Journal of the American Geriatrics Society 32:409, 1984. 14. Chavkin, D., Interstate Variability in Medicaid Eligibility and Reimbursement for Dementia Patients, contract report prepared for the Office of Technology Assessment, U.S. Congress, Washington, DC, 1986. 15. Cohen, J., Public Programs Financing Long-Term Care, The Urban Institute, Washington, DC, draft (revised), January 1983. 16. Colerick, E.J., and George, L. K., Predictors of 1nstitutionahzation Among Caregivers of Patients With Alzheimers Disease, Journal of the American Geriatrics Society 34:493-498, 1986. 17. Dittmar, N. D., and Smith, G. P,, Evacuation of Board and Care Homes: Summary of Survey Procedures and Findings, Denver Research Institute, University of Denver, CO, Feb. 22, 1983. 18. Doty, P., Liu, K., and Weiner, J., An Overview 19, 20. 21. 22. of Long-Term Care, Health Care Financing Review 6(3):69.78, 1985. Fago, D., Veterans Administration, personal communication, June 9, 1986. Fields, S. D., MacKenzie, C. R., Charlson, M. E., et al., (Cognitive Impairment, Can It Predict the Course of Hospitalized Patients? Journal of the American Geriatrics Society 34(8):579-585, 1986. Foley, W.J., assistant professor, Industrial and Management Engineering Department Rensselaer Polytechnic Institute, Troy, NY, personal communication, May 6, 1986. Foley, W .J., Dementia Among Nursing Home Patients: Defining the Condition, Characteristics of the Demented, and Dementia on the RUG-II Classification Svstem, contract report prepared for the Office of Technology Assessment, U.S. Congress, Washington, DC, 1986. 23. Frankel, E. R., Sherman, S. R., Newman, E. S., et al., 24 25 The Continuum of Care Within Psychogeriatric Day Programming: A Study of Program Evolution, Geronto]o@cal Social Work in Home Health Care, R. Dobrof (cd.) (New York, NY: Haworth Press, 1984). Garner, J. D., From Hospital to Home Health Care: Who Goes There? A Descriptive Study of Elderly Users of Home Health Care Services Post Hospitalization, Gerontological Social Work In Home Health Care, R. Dobrof (cd.) (New York, NY: Haworth Press, 1984). George, L. K., The Dynamics of Caregiver Burden, final report to the American Association of Retired Persons, Washington, DC, December 1984. 26. German, P. S., Shapiro, S., and Skinner, E. A., Mental Health of the Elderly: Use of Health and Mental Health Services, Journal of the American Geriatrics Society 33:246-252, 1985. 27. Governors Committee on Alzheimers Disease, Final Report, The Commonwealth of Massachusetts, Boston, 1985. 28. Governors Task Force on Alzheimers Disease and 29, 30, 31, Related Disorders, The Maryland Report on Alz heimers Disease and Related Disorders, Annapolis, MD, 1985. Grob, G. N., The Transformation of the Mental Hospital in the united States, American Behavioral Scientist 28:639-654, 1985. Gunter, P. L., Rural Adult Day Care Means Nontraditional Delivery, Perspective on Aging 14(6):8,9,18, 1985. Gutkin, C, E,, and Morris, S. A., A Description of Facility and Program Characteristics in Nine Domiciliary Care Programs, Domiciliar-y Care Clients and the Facilities in Which They Reside, S. Sherwood, V. Mor, and C.E. Gutkin (eds.) (Boston, MA: Hebrew Rehabilitation Center for the Aged, 1981). Gwyther, L., director, Center for the Study of Aging and Human Development, Duke University Medical Center, Durham, NC, personal communication, June 16, 1986. Harder, W .P., Gornick, J.C., and Burt, M. R., Adult Day Care: Supplement or Substitute, The Urban institute, Washington, DC, draft, 1983. Harper, M. S., introduction) Mental Illness in Nursing Homes: Agenda for Research, M. Harper and B. Lebowitz (eds.) (Rockville, MD: National institute of Mental Health, 1986). Health Facilities Partici~atin~ in Health Care 32. 33, 34. 35. .

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Ch. 6Long-Term Care Services and Settings: An /introduction c 235 Financing Administration Programs, 1985, Heidth Care Financing Review 6(4):143, 1985. 36. Hedrick, S. C., and Inui, T. S., The Effectiveness and Cost of Home Care: An Information Synthesis, Health Services Research 20:851-880, 1986. 37. Institute of Medicine, Improving the Quality of Care in Nursing Homes (Washington, DC: ~ational Academy Press, 1986). 38. Intergovernmental Health Policy Project, Nursing Home Reimbursement under Medicaid, Focus On, February 1986, p. 8. 39. Jerrell, J. M., and Larsen, J. K., How Community Mental Health Centers Deal With Cutbacks and Competition, Hospital and Communit&v Psychiatry 36:1169-1174, 1985. 40. Kansas Alzheimers and Related Diseases Task Force, Final Report to the Kansas Department on Aging, Topeka, KS, 1986. 41. Kaye, L. W., Home Care for the Aged: A Fragile Partnership, Social Work 30:312-317, 1985. 42. Keeler, E. B., Kane, R. L., and Solomon, D. H., Shortand Long-Term Residents of Nursing Homes, Medical Care 19:363-369, 1981. 43. Kelly, J., Veterans Administration Embarks on Day Care Program, Perspective on Aging 14(6):23, 1985. 44. Kramer, M., Trends of Institutionalization and Prevalence of Mental Disorders in Nursing Homes, Mental Illness in NursingHomes: Agenda for Research, M.S. Harper and B. Lebowitz (eds.) (Rockville, MD: National Institute of Mental Health, 1986). 45. Kurland, C. H,, Constituency Speaks Out, Perspective on Aging 14(6):29,34, 1985. 46, Lane, L., Director for Special Programs, American Health Care Association, Statement to the OTA \lorkshop on Financing Long-Term Care for Patients With Dementia, Washington, DC, May 19, 1986. 47. Larson, E. B., Associate Professor of Medicine, University of Washington, Seattle, letter to OTA, Sept. 11, 1986. 48. Lerman, P., Reinstitutionalization and Welfare Policies in the Welfare State in America: Trends and Prospects, American Academy of Political and Social Science Annals 479: 132-155, 1985. 49. Light, E., National Institute of Mental Health, RockVille, MD, personal communication, May 6, 1986. 50. Light, E., National Institute of Mental Health, Rockville, MD, personal communication, Sept. 2, 1986. .51. Light, E., Lebowitz, B., and Bailey, F., CMHCS ICornrnunity Mental Health Centers] and Elderly Services: An Analysis of Direct and Indirect Serv ices and Services Delivery Sites, Commumty Mental Heahh Journal, 22(4):294-302, 1986. 52. Liu, K., Analysis of Data Bases for Health Services Research on Dementia, contract report prepared for the Office of Technology Assessment, U.S. Congress, Washington, DC, 1986. 53. Liu, K., and Manton, K. G., The Characteristics and Utilization Pattern of an Admission Cohort of Nursing Home Patients, The Gerontologist 23:92-96, 1983. 54. Lockery, S. A., Impact of Dementia Within Minority Groups, contract report prepared for the Office of Technology Assessment, U.S. Congress, Washington, DC, 1986. 55. Mace, N. L., and Rabins, P.\., A Survey of Day Care for the Demented Adult in the United States, National Council on the Aging, Vtashington, DC, 1984. 56. Manton, K. G., and Hausner, T., Prospecti\~e Reimbursement Systems for LTC: An Illustration of a Case Mix Methodology for Home Health Services, Duke University, Durham, NC, draft, March 1986. 57. Manuel, R. C., and Berk, M .L., A Look at Similarities and Differences in Older Minority Populations, Aging 339:21-29, 1983. 58. Mor, V., Sherwood, S., and Gutkin, C. E., ( Psychiatric History as a Barrier to Residential Care, Hospital and Comn]unitLv Ps~~chiatq~ 35:368-372, 1984. 59. Mor, L., Gutkin, C. E., and Sherwood, S., The Cost of Residential Care Homes Ser\~ing Elderly Adults, Journal of Gerontology 40(2):164-171, 1985. 60. Morrissey, J. P., and Goldman, H. H., Cycles of Reform in the Care of the Chronically Mentally III, Hospital and Comn]unit~ Pstivchiat
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236 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias 67. Reichstein, K.J., and Bergofsky, L., Summary and Report of the National Survey of State Administered Domiciliary Care Programs in the Fifty States and the District of Columbia, Horizon House Institute, Boston, MA, December 1980. 68. Rhode Island Legislative Commission on Dementias Related to Aging, Final Report, May 1, 1984. 69. Rovner, B. W., and Rabins, P. V., Mental Illness Among Nursing Home Patients, Hospital and Community Psychiatry 36:119-128, 1985. 70. Rovner, B. W., Kalanek, S., Filipp, L., et al., Prev71 alence of Mental Illness in a Community Nursing Home, American Journal of Psychiatry 143:14461449, 1986. Rubenstein, L.Z., Josephson, K. R., Wieland, G. D., et al., Differential Prognosis and Utilization Patterns Among Clinical Subgroups of Hospitalized Geriatric Patients, Health Services Research 20:881-895, 1986. 72. Samuel, F., Health industry Manufacturers Association, Washington, DC, personal communication, Feb. 14, 1984. 73. Sherwood, C. C., and Seltzer, M. M., Task HI Report: Board and Care Literature Review, Boston University School of Social Work (Boston, MA: Hebrew Rehabilitation Center for the Aged, 1981). 74. Sherwood, S,, and Gruenberg, L., A Descriptive Study of Functionally Eligible Applicants to the Domiciliary Program: Commonwealth of Pennsylvania (Boston, MA: Hebrew Rehabilitation Center for the Aged, 1978). 75, Sherwood, S., and Morris, J. N., The Pennsylvania Domiciliary Care Experiment: #1, impact on Quality of Life, American Journal of Public Health 73:646-653, 1983. 76. Sherwood, S., Mor, V., and Gutlin, C. E., Domiciliary Care Clients and the Facilities in Which They Reside, contract report prepared for the Department of Health and Human Services, Administration on Aging, December 1981. 77. Sirrocco, A., National Center for Health Statistics, Division of Health Care Statistics, Rockville, MD, personal communication, May 9, 1986. 78. Soldo, B.J., In-Home Services for the Dependent Elderly: Determinants of Current Use and Implications for Future Demand, working paper, The Urban institute, Washington, DC, May 1983. 79. Soldo, B. J., The Elderly Home Care Population: National Prevalence Rates, Select Characteristics, and Alternative Sources of Assistance, working paper, The Urban Institute, Washington, DC, May 1983. 80. Solomon, B., Ethnic Minority Elderly and LongTerm Care: A Historical Perspective, Minorit.Y 81. 82. 83. 84. 85. Aging and Long-Term Care, E.P. Stanford and S.A. Lockery (eds.) (San Diego, CA: University Center on Aging, San Diego State University, 1982). Somers, A. R., Long-Term Care for the Elderly: Policy and Economic Issues, The Teaching Nursing Home, E.L. Schneider, C.J. Wendland, A.W. Zimmer, et al. (eds.) (New York, NY: Raven Press, 1985). Stassen, M., and Holahan, J., Long-Term Care Demonstration Projects: A Review of Recent Evaluations, The Urban Institute, Washington, DC, February 1981, Stone, R., National Center for Health Services Research, personal communication, May 19, 1986. Stone, R., National Center for Health Services Research, personal communication, Sept. 18, 1986. Stone, R., and Newcomer, R., The State Role in Board and Care Housing, Long-Term Care of the Elderly: Public Policy Issues, C. Barrington, R.J. Newcomer, C. Estes, et al. (eds.) (Beverly Hills, CA: Sage Publications, 1985). 86. Texas Department of Health, Alzheimerk Disease Initiative Nursing Home Study (Austin, TX, 1985). 87. U.S. Congress, Congressional Research Service, Library o~ Congress,OShaughnessy, C., and Price, 88. 89. 90. 91. 92 93. R., Medicaid 2176 Waivers for Home and Community Based Care) Pub. No. 85-817 EPW, June 21, 1985. U.S. Congress, Congressional Research Service, Library of Congress, OShaughnessy, C., Price, R., and Griffith, J., Financing and Delivery of LongTerm Care Services for the Elderly, Pub. No. 851033 EPW, Oct. 17, 1985. IJ.S. Congress, Congressional Research Service, Library of Congress, McClure, B., Medical Care Programs of the Veterans Administration, Pub. No, 86-41 EPW, Jan. 31, 1986. U.S. Congress, General Accounting Office, Identifying Boarding Homes Housing the Needy Aged, Blind, and Disabled: A Major Step Toward Resolving a National Problem, Washington, DC, 1979. U.S. Congress, Genera] Accounting Office, Medicare Home Health Services: A Difficuh Program to Control, GAO Pub. No. HRD 81-155, Washington, DC, Sept. 25, 1981. U.S. Congress, General Accounting Office, The Elderly Remain in Need of Mental Health Services, GAO Pub. No. HRD-82-112, Washington, DC, Sept. 16, 1982. U.S. Congress, General Accounting Office, The Elderly Should Benefit From Expanded Home Health Care But Increasing These Services Will Not Insure Cost Reductions, GAO Pub. No. IPE44-1, Washington, DC, Dec. 7, 1982.

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Ch. 6Long-Term Care Services and Settings: An Introduction l 237 94. U.S. Congress, General Accounting Office, Medicaid and Nursing Home Care: Cost Increases and The Need for Services Are Creating Problems for the States and the Elderly, GAO Pub. No. IPE-841, Washington, DC, Oct. 21, 1983. 95. U.S. Congress, General Accounting Office, Con96 straining National Health Care Expenditures: Achieving Quality Care at an Affordable Cost, GAO Pub. No. HRD-85-105, Sept. 30, 1985. US. Congress, General Accounting Office, A Health Care: Issues and Concerns for VA Nursing Home Programs, GAO Pub. No. HRD-8611 IBR, Washington, DC, August 1986. 97. U.S. Department of Health and Human Services, Public Health Service, National Center for Health Statistics, Characteristics of Nursing Home Z?esidents, Health Status, and Care Received: National Nursing Home Survey, United States, MayDecember, 1977, series 13, No. 51, DHHS Pub. No. PHS81-1712 (Hyattsville, MD, 1981). 98. U.S. Department of Health and Human Services, Office ~f the Inspector General, Board and Care 99, 100 101 102. Homes (Washington, DC, 1982). U.S. Department of Health and Human Services, Social Security Administration, Office of Operational Policy and Procedures, Office of Assistance Programs, Supplemental Security Income for the Aged, Blind and DisabledSummary of State Payment Levels, State Supplementation, and Medicaid Decisions, Jan. 1, 1983. U.S. Department of Health and Human Services, Health Care Financing Administration, Office of Research and Demonstrations, The Medicare and Medicaid Data Book, 1983, D. Sawyer, M. Ruther, A. Pagan-Berlucchi, et al., HCFA Pub. No. 03156 (Baltimore, MD, 1983). U.S. Department of Health and Human Services, Public Health Service, National Center for Health Statistics, Ad\~ancedata, No. 111, Sept. 20, 1985. U.S. Department of Health, Education, and Welfare, Public Health Service, National Institute of Mental Health, Kramer, M., Psychiatric Services and the Chan@ng Institutional Scene, DHEW Pub. No. ADM77-433 (Bethesda, MD, 1977). 103. U.S. Senate, Subcommittee on Health of the Committee on Finance, Medicare Home Health Benefit, hearing held June 22, 1984. 104. U.S. Senate, Special Committee on Aging, Developments in Aging, 1984, vol. 2 (Washington, DC: U.S. Government Printing Office, February 1985). 105. U.S. Senate, Special Committee on Aging, Nursing Home Care: The Unfinished Agenda, No. 99106. 107 < 108. 109. 110. 111. 112. 113. 114. 115 116. 117 J, May 1986 (Washington, DC: U.S. Government Printing Office, 1986). U.S. Senate, Committee on Veterans Affairs, Title XIX of the Consolidated Omnibus Budget Reconciliation Act of 1985 (Public Lawr 99-272; April 7, 1986) Veterans Health~are Amendments of 1986, committee print (Washington, DC: U.S. Government Printing Office, 1986). VandenBos, G. R., Stapp, J., and Kilberg, R. R., Health Service Providers in Psycholo~v: Results of the 1978 APA Human Resources Survey, American Psychologist 36:1395-1418, 1981. Vandivort, R., Kurran, G. M., and Braun, K., Foster Family Care for Frail Elderly: A Cost Effective Quality Care Alternative, Gerontological Social Work in Home Health Care, R. Dobrof (cd.) (New York, NY: Haworth Press, 1984). van Ge]der, S., General Accounting Office, U.S. Congress, personal communication, May 22, 1986. Veterans Administration, Harvard Conference on vA/CommunitV Resources and the Older Veteran, Boston, MA, ~983. Veterans Administration, Caring for the Older Veteran (Washington, DC, July 1984). Veterans Administration, Department of Medicine and Surgery, Guidelines for Diagnosis and Treatment, IB 18-3 (Washington, DC, Oct. 10, 1985). Vladeck, B. C., Unloving Care: The Nursing Home Tragedtiv (New York, NY: Basic Books, 1980). Vladeck, B.C., The Static Dynamics of Long-Term Care Policy, The Health Policy Agenda: Some Critical Questions, M.E. Lewin (cd. ) (Washington, DC: American Enterprise Institute for Public Policy Research, 1985). Volicer, L., Need for Hospice Approach to Treatment of Patients With Advance Progressive Dementia, Journal of the American Geriatric Society 34(9):655-658, 1986. Weiler, P., director, Center for Aging and Health, School of Medicine, University of California, Davis, statement to the OTA Advisory Panel on Disorders Causing Dementia, Washington, DC, June 16, 1986. Weissert, W .G., Seven Reasons Why It Is So Dif ficult To Make Community-Based Long-Term Care Cost -Effective, Health Services Research 20:423433, 1985. 118. Weissert, W. G., Two Models of Geriatric Day Care: Findings From a Comparative Study, The Gerontologist 16:420-427, 1976. 119. Weissert, W .G., and Scanlon, W., Determinants of Institutionalization of the Aged, working pa-

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238 Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias per, The Urban Institute, Washington, DC, July 122. Yankelovich, Skelly, and White, Caregivers of Pa1983. 120. Wetle, T., and Rowe, J. W., Older Veterans: Linking VA and Community Resources (Cambridge, MA: Harvard University Press, 1984). 123 121. Wolfson, S., The Policy of Pairing Patients With Different Cognitive Skills in the Same Room of a Nursing Home (letter to the editor), Journal of the American Geriatric Society 31:246, 1983. tients With Dementia, contract report prepared for the Office of Technology Assessment, U.S. Congress, 1986, Zimmer, J. G., Watson, N., and Treat, A., Behavioral problems Among Patients in Skilled Nursing Facilities, American Journal of Public HeaZth 74:1118-1121, 1984.

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Chapter 7 Programs and Services That Specialize in the Care of Persons With Dementia

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CONTENT S Page The Recent Interest in Special Care . . . . . .................242 What Is New About Special Programs? . . . . . . ........242 Who Is Served by Special Units?. . . . . . ...............242 Advantages and Disadvantages of Specialization . . . . . ......243 Service and Programs Needed by Those With Dementia and Their Families ., ..244 Needs of Families . . . . . ..., . . . . . ....245 Needs of Individuals with Dementia . . . . . ...............245 Services That Can Be Tailored to Persons With Dementia ..................247 Companion Care, Home Health Aides, and Visiting Nurses . . . ...248 Adult Day Care . . . . . . . . . . . ........248 Short-Term Residential Care . . . . . . . . . ....252 Multi-Service Programs. . . . . . . . . . . .. ....252 Other Settings . . . . . . . . . . ...........252 Hospice. . . . . . . . . . . . ............,.,253 Residential Special Care,. . . . . . . . ...............254 Foster Homes, Domiciliary Care, and Boarding Homes ...................254 Special Units in Nursing Homes . . . . . . . ........255 Application of Technologies to Care . . . . . ..............262 The Effect of Regulations on the Development of Special Care ..............262 Issues and Options . . . . . . . . . . . ......264 Issue 1: Should the Federal Government Support the Development of Special Care for Persons With Dementia? . . . . . ........264 Issue 2: Should the Federal Government Set Standards for Special Residential Care, Respite Care, or Both, for Persons With Dementing Illnesses? . . . . . . . . . .....................266 Chapter preferences. . . . . . . . . . . . . .267 Tables Table No. Page 7-l. Arguments For and Against Special Programs/Units for Persons With Dementia. . . . . . . . . .............244 7-2.OTA Survey: Availability and Use of Services for Persons With Dementia ..245 7-3.OTA Survey: Reasons for Not Using Available Support Services. . .. ....247 7-4.Issues in Health Service Research . . . . . ...............266 Boxes B OX NO. Page 7-A. Senior Respite Care Program . . . . .....................248 7-B, Duke University/American Association of Retired Persons (AARP) Project ..249 7-C. Atlanta Area Chapter of ADRDA . . . . . . . .. ....249 7-D.Atlanta Community Services Program . . . . . ...........250 7-E. Family Respite Center . . . . . . . . . . ..250 7-F. Harbor Area Adult Day Care . . . . . .................250 7-G. Alzheimers Family Center, Inc.. . . . . . . ., .......,251 7-H. Veterans Administration Residential Respite Programs ..........,......252 7-I. Family Survival Project . . . . . . . . . .. ....253 7-J. Comprehensive Services on Aging Institute. . . . . . ....253 7-K. Suncoast Institute for Applied Gerontology ...........................254 7-L. Valenti Alzheimers Care Center. . . . . . ...............254

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Chapter 7 programs and Services That Specialize in the Care of Persons With Dementia* The increasing recognition of the needs of those with dementing illnesses has led to the development of programs and servicesday care, home care, short-term residential care programs, and nursing home programsthat specialize in caring for those persons. This interest in special services arises in part from recognition of the potential market, in part from the demand of family members and voluntary associations, and in part from the hope that special resources and skills may improve the care of these people. Although there are now only a handful of these specialized programs, the growing number of them raises important policy questions: What standards should these programs meet? how should they be reimbursed? and is it in the individuals best interests to be segregated? Some answers depend on understanding whether the care needs of these people are different from those of other chronically ill elderly individuals. Since many of them have been served all along by longterm care programs, particularly nursing homes, what is new about special dementia care? Indeed, some of the changes advocated for specialized dementia care are improvements that would benefit many other long-term care recipients. This is the first generation of such special care programs. Although a few nursing homes have had specialized units for more than a decade, most such programs are less than 5 years old, and the total number of persons receiving special care is small. It cannot be assumed that services that have been found to be beneficial to a few people will be of value to over a million others. Nevertheless, enough information is available to consider some questions: l Who is served in special units? What are the advantages and disadvantages of specialization? l This chapter is a contract report bjr Nancy Nlace, consultant in Gerontology, Towson, hlD. l l l What kinds of services and programs do patients and families need? What kinds of services and programs are appropriate in specialized care? What specialized care is currently being provided? Although an extensive body of literature exists on nursing home care (93) and on respite care for the elderly (91), there is limited information on special dementia care programs; what there is represents the opinions and experiences of clinicians rather than reports of controlled studies. Although there is some research on interventions with the elderly mentally ill and with nursing home residents, much is poorly designed and most does not discriminate between persons with and without dementing disorders (100). Thus this chapter must rely on anecdotal material and best guesses of experienced clinicians. Policy makers cannot assume that these represent the best ultimate approaches to care. Additional research is urgently needed. Seven providers of special services were asked to document their experiences for OTA (18,25,32, 42,67,74,84). One contractor had previously surveyed other special care programs (95). Another reviewed in detail the management of incontinence (96). In addition, OTA reviewed reports of specialized nursing home programs, and OTA contractors and staff attended conferences, visited facilities, and consulted with providers in the industry and the nonprofit sector. A few of those providers have worked for many years with chronically mentally ill elderly individuals (a term that includes many persons with dementia). This chapter also draws on the studies of elderly mentally ill persons in State mental hospitals prior to deinstitutionalism (efforts to move people out of such facilities) (20,30,35,36,51,55). OTA found variations in services and no consensus about what constitutes ideal or costefficient care. But OTA did observe a clear move241

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242 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias ment toward providing specialty care for persons with dementia and agreement among leading clinicians about the principles of such care. Specialized care for individuals with dementia can be delivered in any setting and can provide most services noted in chapter 6, including respite for families or long-term residential care. The options for care should be a part of a network of resources for families and those with dementia, who will need different resources as the persons health and the family status change through the course of the illness, and who may need to move back and forth between formal and informal care (100). Ideally, resource clearinghouses, information and referral systems, and case management services would be available to assist patients in locating specialized care programs and in moving easily from one setting to another. In fact, resources are fragmented, funding is discontinuous, and information is often not available. Patients and families also need allied resources such as legal advice from attorneys familiar with dementia, Legal issues are described in chapters 5 and 11 and will not be dealt with here. This chapter will be limited to a discussion of special respite and long-term care programs which specialize in care of persons with dementia. However, such services must be thought of as links in a broader spectrum of care needs, THE RECENT INTEREST IN SPECIAL CARE What Is New About Special Programs? Persons with dementia are not entirely new to formal care providers. Until the movement toward deinstitutionalization, persons with dementia whose families could not care for them were housed in State mental hospitals along with individuals suffering from a range of mental disorders. State mental institutions therefore had a history of caring for persons with dementia, and a few institutions developed special care programs for them. Reinstitutionalization resulted in the transfer of public care for those with dementia from State mental hospitals to nursing homes (13). More than half the current residents of nursing homes apparently suffer from dementing illnesses (see ch. 1). The number of persons with dementia and in need of care is increasing (see ch. 1), and there is a growing concern that the nursing home systemfacilities, funding sources, and regulating agenciesdoes not serve such individuals well. With the increasing public interest in these illnesses has come a parallel interest in both care outside of nursing homes or mental hospitals and in different approaches to care within such facilities. Who Is Served by Special Units? The kind of care offered by the few existing special programs is not considered appropriate for everyone with a dementing illness. In nursing homes that have established a special care unit, most individuals with dementia still reside on mixed units. Many nursing home residents are frail and suffer from multiple, severe illnesses. Their mental confusion may result from Alzheimers disease or from delirium brought about by their illness. These people need more nursing care than the special programs offer. Thus most people with dementia are now cared for in programs designed to serve all frail or ill elderly individuals. Programs that specialize in dementia care address the needs of those who are most difficult to care for or whose care needs have been overlooked. No generally accepted criteria defining who will be served in special programs have been established. The criteria followed by many programs can l be summarized as: Presence of irreversible dementia: Most programs serve only adults with a clear history of intellectual decline, excluding persons with mental retardation and those with treatable causes of mental impairment.

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Ch. 7Programs and Services That Specialize in the Care of Persons With Dementia 243 l Presence of disruptive behaviors: In contrast to programs that historically have excluded persons who are incontinent, agitated, combative, prone to wandering, etc., these programs focus on the behaviorally disabled whom they see as most in need of services. l Ability to benefit from the program: This vague criterion is used to describe persons in the midstages of an illness, when behavior problems are most likely to be present, and when the individuals can be observed to respond to social activities. Later in the illness these programs may discharge or transfer persons who need extensive nursing care, who are not ambulatory, who are too ill to show disruptive behaviors, or who are less responsive to group social activities. (Programs that serve people individually in their homes may serve persons who are more seriously impaired than those in group programs.) Opinions differ on the ideal diagnostic mix of persons who should be served in specialized programs. Some families of individuals with Alzheimers disease advocate programs that serve only that group. Some programs, notably the Family Survival Project in San Francisco (27), serve all brain-damaged adults, including those suffering from stroke, trauma, Parkinsons disease, Huntingtons disease, normal pressure hydrocephal U S and Alzheimers disease, These programs strongly advocate a noncategorical program for all brain-injured adults. The argument centers on whether persons with Alzheimers disease are more or differently impaired and require different care than other braindamaged adults. In practice, most programs serve mainly persons with Alzheimers disease and a sprinkling of persons with various other conditions, reflecting the mix in the community as a whole. While people with Alzheimers disease do have characteristic symptoms that distinguish them from those with related disorders, providers report that the behaviors and care needs of most persons with dementia are based as much on the stage of the illness or on individual characteristics as on diagnosis. No service provider reported to OTA that problems were caused by serving individuals with other diagnoses, although a person with any disorder, including Alzheimers disease, can prove unsuitable for a given program. Several reported that a diagnostic mix was beneficial. Designing programs for these active and difficult persons who can benefit from such efforts has one major drawback: It could result in choosing only the most responsive individuals, leaving the more difficult or withdrawn to receive less care. ADVANTAGES AND DISADVANTAGES OF SPECIALIZATION Table 7-1 summarizes some of the arguments for and against special units for persons with dementia. Few solid data support either side. But care providers seem increasingly convinced that these persons have unique limitations best met by specialized care. The results of the programs discussed in this chapter support that belief, In addition, enthusiasm for special care programs has probably been influenced by a common frustration that long-term care has failed this group. It should be noted that, although these arguments are most often raised in discussion of nursing home special units, similar concerns confront day care or respite providers. Also, these arguments assume that special care is targeted toward those with dementia alone. Different issues are raised by the care of persons who are both cognitively impaired and have serious physical illness. Finally, the trend toward specialized care challenges the long-held assumptions of therapeutic nihilismthat there is nothing that can be done for people who are old and senile (60). In weighing the advantages and disadvantages of special care, the effect of widespread adoption of programs must be considered. The few existing programs have enthusiastic staff and are the focus of community interest. Those qualities may not carry over to large-scale programs and may need to be supplemented or enhanced by staffing requirements or formal quality assurance mechanisms.

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244 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias Table 7-1 .Arguments For and Against Special Programs/Units for Persons With Dementia Arguments for Arguments against The needs of individuals with dementia are not the same. People need much the same care. Most nursing home resirained staff in a special environment can produce measdents suffer multiple illnesses, of which mental impairment urable evidence of benefit in persons with dementia. is only one. They need regular nursing care. Quality care should be available to all nursing home residents, Provision of special units is unfair to other people who would but even in the best possible setting the needs of the cogalso benefit from many of the environmental changes that nitively impaired are different from those of the cognitively help people with dementia. Instead of segregating people, intact. the quality of all care should be upgraded. Being around people whose mental functioning is higher can Placing persons with dementia with cognitively well persons be stressful for persons with dementia, who must conhelps the person with dementia stay alert by providing role stantly struggle to process even simple information. This models. Isolation in all-dementia units may lead to greatmay be one cause of behavior problems. er deterioration. Special units permit special interior design, fire safety equipSpecial units must hold a bed open until a person with demerit, trained staff, and marketing efforts to attract private mentia needs it. This is more expensive than quickly fillpay clients. The demand for quality ensures that beds in ing beds with the next available client. good facilities will fill quickly. Cognitively well elderly persons have made it clear in severIn mixed units, cognitively well individuals can help look al informal surveys that they do not want to spend their after the person with dementia, which allows lower staffIives with persons who act crazy or are disruptive. The ing levels and gives the well client something to do. lucid client is vulnerable to loss of privacy, loss of personal property, interrupted sleep, and fear of harm by the agitated person. Efforts to protect the lucid client may result in overmedication and restraints, which have negative effects on persons with dementia. There are ethical issues involved in using persons who are paying for their own care as supervisors of other patients. The current demand for specialized units is such that peoIn areas with a low population density, there will not be ple will transport family members long distances for resienough persons with dementia to support special units, dential care. particularly day care. An all-dementia unit allows staff to develop expertise in care Staff will quickly burn out on a dementia unit. The issue for clients. This benefits residents and is rewarding to staff. of burnout and staff satisfaction is not unique to demenExperience has shown that staff do not necessarily burn tia care, but reflects pervasive problems in long-term care. out. Patients rights laws, ombudsmen, and quality assurance A program serving persons with dementia would create a regulations assure oversight of persons who are not com ghetto in which no one would be able to report abuses or petent. The new focus on dementia reduces the risk that be a legally capable witness. Ombudsmen rarely serve individuals would be poorly served. board and care facilities. Persons with dementia often outlive the family members who advocate for them. Dementia is a medical specialty long overdue for recognition. Dementia is not a medical specialty, deserving of separate Specialty programs would attract physicians and nurses designation and specialization, because the needs of these interested in this field. individuals are primarily psychological and social. SOURCES: M. Ablowitz, Pairing Rational and Demented Patients in Long-Term Care Facilities, Journal of the American Geriatrics Society 31 :627+28, 1983; J. Bergman, Mentally Ill in Nursing Homes? Yes, if ., ., Geriatric Nursing 3:98-100, 1983; R. Cook-Deegan and N. Mace, Care of Patients With Dementia, Testimony, California Task Force on Alzheimers Disease, 1986; D. Coons, A Residential Care Unit for Persons With Dementia, contract report prepared for the Office of Technology Assessment, U.S. Congress, 1966; G. Hall, V. Kirshling, and S. Todd, Sheltered Freedom: The Creation of an Alzheimers Unit in an Intermediate Care Facility, unpublished paper, 1985; Hebrew Home for the Aged at Riverdale, Institutional Approaches to the Care of Individuals With Dementia, contract report prepared for the Office of Technology Assessment, U.S. Congress, 1986; N, L. Mace, Home and Community Services for Alzheimers Disease: A National Conference for Families, U.S. Department of Health and Human Services and Alzheimers Disease and Related Disorders Association, May 2, 1985; J. Pynoos and C.A. Stacey, Specialized Facilities for Senile Dementia Patients, The Dementias: Policy and Management M.L,M. Giihooly, S. Zarit, and J.E Birren (eds.) (Englewood Cliffs, NJ: Prentice Hall, 1986). SERVICES AND PROGRAMS NEEDED BY THOSE WITH DEMENTIA AND THEIR FAMILIES Chapter 2 describes the characteristics of indiIn addition, services should be tailored to surviduals with dementia, and chapter 4 documents mount the problems of service delivery in rural the needs of family caregivers. Ideally, these needs areas and to meet the needs of varied ethnic will define the shape of special care programs. groups. For example, since people with dementia

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Ch. 7Programs and Services That Specialize in the Care of Persons With Dementia 245 Table 7-2.OTA Survey: Availability and Use of Services for Persons With Dementia Available Used a Yes No Dont know No answer Yes b No, never used No answe r 100% % % 0/0 % 0/0 % % Visiting nurse . . . . . . . . 51 10 31 7 44 53 4 Paid companion/home health aide . . . 48 16 29 8 59 38 3 Temporary, round the clock respite care. . . 21 24 47 8 13 61 27 Special dementia unit nursing home care. . 21 33 37 9 44 50 7 Adult day care . . . . . . . 29 24 39 8 31 66 3 Domiciliary/boarding care. . . . . . 14 26 51 9 33 61 6 NOTE: Percentages rounded to the nearest whole number aBase = those who knew sewice was available. bcurrent and past used combined. SOURCE: Yankelovich, Skelly, & White, Inc Caregivers of Patients With Dementia and Their Families, contract report prepared for the Office of Technology Assess. ment, U S Congress, 1986. have problems in learning, persons from other cultures may have great difficulty adapting to mainstream programs. Needs of Families Although families report high levels of need for services, an OTA survey of caregivers of individuals with dementia found that services were not available for many (99) (see ch. 4; the study is referred to in this chapter as the OTA survey or study). Table 7-2 shows that many families know services are available, yet families do not always use available services. Of the families surveyed who knew a service was available, 38 percent did not use a home health aide and between 50 and 66 percent did not use other services. Many families are noticeably reluctant to turn any care over to others. The OTA survey and others (33) have identified several characteristics of care provided by families that could affect the use of specialized services. Care must be affordable. Some resources are available but beyond the reach of families. Although they are concerned that their resources not be exhausted, families prefer to share with the formal system, rather than completely turn over, the costs and tasks of caregiving whenever possible. Current funding sources, notably Medicaid, impoverish the family before providing assistance, and the emphasis on nursing home placement reduces the caregivers continued participation in care. Evidence from respite programs (37,74) indicates that families can remain in control of the care process by paying a portion of respite care costs, by using voucher systems that allow a family to select the provider, by participating in caregiving, and by helping paid providers develop care plans. Needs of Individuals With Dementia Arguments for and against specialized care turn, in part, on different views about medical v, social needs, about the potential of these individuals for treatment, and about the benefits of treating the person v. treating the environment. First, the handicaps of people with dementia, and therefore their needs, differ from those of the physically ill. Since the symptoms are behavioral and the difficulties mental, for much of their illness individuals need physical less care than supervision and support of their remaining mental capacities. That difference makes one of the strongest arguments for specialized care, As these diseases progress, however, the need for physical care increases and the effectiveness of existing special units appears to lessen. More medical and nursing care will be needed. The existence of these shifting needs over time fuels the debate over a social rather than medical model of care. Each model tends to explain the individual behaviors on the basis of its own tenets, despite the fact that the distressing behaviors of dementing illnesses are explained in part by organic illnesses and in part by the social environment (see ch. 2). Dementia has been described as a bio-psychosocial phenomenon. Although the biological aspects

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246 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias are not currently treatable, the psychological and social aspects may be amenable to intervention (52). But the shape of future programs will be heavily influenced by policy and funding, which until now have focused on either a strict medical model (Medicare and Medicaid) or a primarily social one (Older Americans Act). Many persons with dementing illnesses have psychiatric symptoms that may be amenable to treatment (see ch. 2), Services need to include psychiatric skills or access to a psychiatric consultant for help in decreasing such symptoms and maximizing function. A second unknown is how much can be done for persons with dementia. Current funding policy assumes that people with dementia do not have rehabilitative potential and therefore are eligible only for custodial services at rates that discourage efforts to search for treatable aspects of the individuals illness. Funding does not support the employment of persons skilled in dementia care. Function may be improved in some individuals by treating excess disability (52) (see ch. 2). The term refers to impairments in everyday functioning that are worse than expected considering the underlying biological deficits. Little is known about the prevalence of excess disability among persons with dementia, or about the capacity of persons to respond to treatment. Estimates of the number of those persons in nursing homes and acute care institutions with untreated conditions are high (53). Some but not all will improve significantly if treated. Much of the improvement documented among demented nursing home residents (discussed later in this chapter) may actually be elimination of excess disability. A third disagreement is whether treatment should be directed at the individual or the environment. Federal policy is generally limited to funding interventions that treat the person. Reimbursement of caregiver supports or construction of facilities with special modifications for the purpose of treating someone with dementia would require a change in funding policy. Some techniques, such as reality orientation (29,30,76), behavior modification, remotivation therapy (64), fantasy and validation therapy (28), use of drugs to control behavior, and the potential use of drugs to enhance memory, are intended to effect change in a person by acting directly on that person. Studies to date have not shown that these techniques consistently improve the functioning of persons with dementia (100). In contrast, some observers (19,60,63) argue that the individual benefits from the creation of a physical and psychosocial environment that supports function and that, conversely, inappropriate environments can result in unnecessary impairment in persons with dementia. It may be that the environment can be modified (both physically and interpersonally) to support greater function for persons with dementia (48,56,60). The percent of individuals who would respond to an improved physical and psychosocial environment is unknown, but of the special nursing home units reviewed by OTA, all that attended to some type of excess disability or made changes in environment reported improvements in the residents with dementia. One researcher maintains that: there is now good evidence that even elderly demented patients are capable of showing a beneficial response to environmental manipulation. However, unlike physical therapy or similar treatments, maintenance of behavior change is dependent on the continuation of the intervention (63). Evidence that environmental changes may be beneficial if they are continued raises another problem of policy. In general, the intent of Federal programs (such as Medicare) has been to support rehabilitative, short-term care that will enable a person to return to more normal functions, rather than interventions that must remain in place to support improvement. Many of the people now in nursing homes and included in the estimates of the number of those with dementia, suffer from multiple, severe illnesses. Their cognitive impairment is often due both to delirium and to dementia. They are too ill to benefit from the kinds of programs described in this chapter. Even the best medical care can do little to alter their overall condition. Programs designed to improve the quality of life for people with dementia probably will have little effect on this group. However, there are also an unknown number of people who would respond to interventions but have been consigned to the hope-

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Ch. 7Programs and Services That Specialize in the Care of Persons With Dementia l 247 less category. Questions about the size of the those who would benefit be identified? There is group that could be helped raise another issue a need for physicians trained in geriatrics to be of policy: Since not all cognitively impaired peoavailable for those in nursing homes and similar ple will benefit from special programs, how should settings. SERVICES THAT CAN BE TAILORED TO PERSONS WITH DEMENTIA In its survey, OTA asked why families did not use a service if it were available (see table 7-3). Only a few reported that the service would not accept a person with a diagnosis of dementia but, depending on the service, 5 to 18 percent reported that staff was not sufficiently knowledgeable about dementia. The most common reasons for not using or no longer using respite services, among those who knew that such services were available, were that the person entered a nursing home, the service was too expensive, the ill person died, or the service was not needed. Thus, some individuals apparently used appropriate respite services until their condition worsened, leading to placement in a nursing home or to death. This conclusion also indicates that respite care is a temporary solution and does not necessarily replace nursing home care (75). Several different alternative services are being tried by chapters of the Alzheimers Disease and Related Disorders Association (ADRDA), individual entrepreneurs, family service organizations, and the health care industry. The search for appropriate care is international (65,81). At this point in the development of dementia care options, the programs are highly individualized. Providers are trying different interventions and exploring innovative ways to reach clients and hold down costs. Special programs apparently are still rare, however. There is no listing of existing services, but the special units in nursing homes and respite programs are estimated to be serving between 1 and 2 percent of persons with dementia. (This figure is based on programs known to American Association of Homes for the Aged (AAHA), American Health Care Association, ADRDA, New York State Table 7-3.OTA Survey: Reasons for Not Using Available Support Services a Domiciliary/ Special dementia Paid companion/ Visiting Respite Adult day boarding nursing home health aide nurse care care care care Reasons Base b 36% 42% 17% 240/o 10 /0 13/0 The patient entered a nursing home 46 43 40 35 40 24 The service is too expensive. . . 31 23 24 11 16 19 The patient got worse or died. . . 21 21 15 17 9 20 The service is not needed . . . 19 27 25 19 26 27 The people available to provide this service are not sufficiently knowledgeable about dementia . 16 11 5 5 9 4 The patient refused to accept the service. . . . . . . 15 10 10 25 13 5 Lack of knowledge about how to arrange for this service . . . 9 2 6 4 6 10 The waiting list is too long . . 4 1 3 2 2 7 The service would not accept the patient because of the patients diagnosis . . . . . . 1 4 6 6 5 Other reasons . . . . . 12 6 13 11 11 14 No answer . . . . ., . 6 9 9 8 15 11 %uestion was asked of respondents who said respective service was available but was not used. bpercent of total surveyed, Totals more than 100/0 because of multiple reSpOnSes SOURCE, Yankelovich, Skelly, & White, Inc Caregivers of Patients With Dementia and Their Families, contract report prepared for the Office of Technology Assessment, U S Congress, 19S6.

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248 Losing a Million Minds: Confronting the Tragedy of Alzhehners Disease and Other Dementias Department of Health, Hebrew Home for the Aged at Riverdale, Hillhaven Corp., National Council on Aging, and OTA.) Companion Care, Home Health Aides, and Visiting Nurses Families report that part-time help at home is the form of respite they need most (37,99). In programs providing such care, a nonprofessional person with special training spends a few hours a week with the individuals with dementia so that the caregiver can leave the home or rest. Fiftynine percent of the respondents in the OTA study had used an aide in the home and 44 percent had used a visiting nurse. Families often used a home health care agency or made private arrangements, thus the number of these providers who had special training is not known. Some specialized programs use volunteers, others use paid volunteers, and some pay a salary. Several ADRDA chapters offer help at home, and others are allied with respite providers. The three programs described in boxes 7-A, 7-B, and 7-C found that a half-day per week, or less than 6 hours weekly, was what families most often needed. Relief was requested most often during regular business hours. Although programs affiliated with ADRDA or with universities attempt to ensure the quality of in-home providers, there is little or no mandated monitoring of the quality of home care. Home care aides generally are not required to have special training or to be bonded. There is often no requirement for background checks of persons going into the homes of vulnerable persons. Possibilities exist, therefore, that individuals with dementia and their families might be exploited. Some families have refused to use in-home care for these reasons. Adult Day Care Adult day care has developed as an option of care for frail elderly persons mainly in the past 15 years. It has served primarily individuals who were cognitively intact, but many day care centers have always served a few confused persons. Over the past 5 years, with the increasing interest in dementia, several day care centers have been established solely for individuals with dementia. Adult day care contrasts with geriatric day hospitals that have been developed in England. A day hospital offers many of the same services as a regular hospital, except that patients live at home. The emphasis is on medical treatment and rehabilitation (7). Clients have a potential for improvement and the staff includes rehabilitation therapists. There are few day hospitals in the United States, where the focus has been on adult day care. Day care differs from day hospitals in services offered (less medical, psychiatric, and rehabilitative care), client population (more chronically impaired), the expected outcomes (less client improvement), and staffing pattern (68). Some States (e.g., California) further distinguished between adult day care and adult day health care. Although it offers social programming, day health care places greater emphasis on nursing needs of clients. This distinction is often difficult to make

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Ch. 7Programs and Services That Specialize in the Care of Persons With Dementia 249 in practice and can serve to exclude persons with dementia, who characteristically need nursing care, socialization, and social services. Despite enthusiastic reports of the positive effect of day care on persons with dementing illnesses, questions remain about the role of day care and its effect on individuals and families (34,61). One problem is the number of different expectations people have about day care. It has been seen as a treatment, assessment, and rehabilitation program; as a form of support for families; as a means of providing stimulation; and as a vehicle for promoting and maintaining quality of life. Such diverse goals make attempts to study day cares effectiveness difficult. However, care is clearly not appropriate for some individuals and families (e.g., people who have no caregiver or those who are too ill to benefit from the social experience). A 1984 survey of adult day care programs in the United States estimated that some 2,200 to 2,400 persons with dementia were being served (61). The majority of centers served a mixture of confused and alert clients, but 17 centers (5 per-

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Ch. 7Programs and Services That Specialize in the Care of Persons With Dementia 251 as the Alzheimers Family Center in San Diego (see box 7-G). All were started with the assistance of community groups. All have succeeded in providing care to people who need one-to-one help with meals, who are ambulatory and prone to wander, who need assistance with toileting, and who have behavioral outbursts. All report significant benefits to clients and families. Most programs provide some nursing management to clients and some social services to caregivers. Day care is consistently reported to be beneficial to clients, in addition to providing respite to families. In the national survey, 84 percent of the centers said their clients with dementia made friends with others, 79 percent thought that clients enjoyed day care, 67 percent reported that pacing and wandering decreased, and 71 percent reported that clients had fewer emotional outbursts (61), The 1984 survey of day care reported a mean charge per day of $20 (61). It did not determine costs. The ADRDA estimates a current average daily cost of $25 to $30 (5), and the National Institute on Adult Day Care reports an average cost, with subsidies, of $31 per day (78). The survey reported ratios of one staff person to four or five clients. Some programs are open from early morning to late evening weekdays in order to accommodate working caregivers. These centers were also found to be providing considerable informal support to families through teaching, case coordination, and short-term counseling. Centers supplement staff with volunteers (61). These findings indicate that, as with other forms of respite, day care probably does not replace nursing homes, but serves instead as a vital support to families in the period before nursing home placement is needed (see also ch. 4). And they show that not all individuals or families can use day care. Other physical illnesses; a greater need for help with walking, toileting, and eating than the center can manage; and inability to adjust to a new environment prevent some people from using day care. About one client in five dropped out because of inability to adjust to the setting (61). To date there is no way to identify these people in advance. The OTA study found that among families who had access to adult day care, 25 percent reported that the person with dementia rejected the service (i.e., could not adjust to day care or was unable to function in a group). The most common reasons for discharge from day care, according to the national survey, were (in descending order) clients transfer to a nursing home, clients death, and clients inability to adjust to the program. The OTA study findings were similar. Transportation problems and client moves from one household to another are other reasons for discharge. Transportation is a serious problem both in the United States (61) and in Great Britain, where day care has been used much longer (3). Elderly caregivers may not be able to drive, and confused, disoriented individuals cannot tolerate a long bus ridenecessary unless the clients live in an area with a high population density. They may be unwilling to board the bus or may wander away when they are dropped off. Some programs have a staff person on the bus to assist clients in and out of the home and the transport vehicle. Regardless of problems associated with day care, the social responsiveness of those with dementia confirms that it is one way to improve the quality of life for these individuals as well as provide respite for caregivers. Multiple factors of both client and caregiver determine who will successfully use this resource. As with child day care, adult day care may prove to be an excellent employee benefit for adult children caring for a parent. Unlike some other methods of providing special care, most day care programs are providing substantially the same services and have had enough experience with clients to establish guidelines on what these services should be (54,71,72,

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252 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias 85,101). The National Council on the Aging has published a bibliography of sources (87). Night care has also been proposed for people who could live with family but whose nighttime activities seriously stress the caregiver. Short-Term Residential Care Short-term residential care provides stays of days or weeks in a residential setting, usually a nursing home. Only 13 percent of caregivers responding to the OTA survey used short-term residential care, perhaps because it is rarely available. Forty-three percent, however, ranked it as most important These programs have several problems, however. Because the stay is too brief for residents to adjust to the surroundings, they may be more restless and agitated than participants in other programs. Short-term programs may therefore need additional staff. Care may be more difficult if individuals are placed on units with residents who are not confused. And nursing homes report that regulations and paperwork for a short-term admission are so cumbersome that short stays are not cost-effective. In the past, the urgent need for short-term respite has led to acute hospital admissions for persons whose caregiver must have medical care or rest. Used that way, this is an extraordinarily expensive resource; it has been proposed, however, that empty hospital beds could be used for respite. Some programs have found that families are reluctant to take the ill persons with dementia back at the end of the respite period. These are probably families who actually needed to have the person placed in a nursing home but who tried to compromise by using respite. For some caregivers, short-term admission helps them realize how ill the individual is or that the person does not know where he or she is or who is providing care. The presence of nursing staff may confirm for the family that the person really needs more care than they can provide (37,43). These things all make it easier for reluctant caregivers to accept nursing home placement. Multi-Service Programs Programs are being developed that offer a wide range of services to the family and the person with dementia. These multi-service programs have the advantage of coordinating care and facilitating referral from one program to another, and allowing staff members to get to know individual clients and families. In addition, the staff at such programs has access to a broad database for research. California recently authorized a 4-year demonstration project for three Alzheimers disease institutes that would provide a continuum of traditional and innovative services including diagnosis and assessment, day care, home care, hospice care, and skilled nursing care (Assembly Bill 999). Other Settings Other forms of care being considered or tried include vacation programs that serve both the ill person and the caregiver (1), sitter programs in a group site (75), client recreation and therapy while families are being provided group therapy (57), medical teams that do an in-home evaluation, and family-run cooperatives (1,75), Publications on these various programs are slowly becoming available (15,21)38)77,79,101). Although the family is clearly the most common provider of care, little attention has been given to training family membersthe primary caregiver and members of the extended family-in the

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Ch, 7Programs and Services That Specialize in the Care of Persons With Dementla l 253 techniques of care. Some ADRDA chapters have launched programs that train family members or lay persons in the community to care for persons with dementia. Caregivers might learn to care with less stress to themselves. other members of the extended family may not provide support or give respite to the caregiver because they feel helpless and do not know what to do. In such situations, a family member can learn to be a respite care provider. Family training is often done informally by professionals who observe the need. A nurse visiting in the home to treat a person with dementia offers extensive bedside training for the caregiver, for example. Although such services are not covered by Medicare or other sources, they may be of significant value in keeping the individual with dementia in good health and in sustaining the caregiver. Hospice Programs and services similar to hospice, which assist individuals and families at the end of the persons life, may be needed. OTA found no such programs except for the excellent care of families and patients provided by major research institutions. The needs of a dying person with dementia and his or her family have needs that differ in some ways from those of other dying individuals. The person may be terminally ill for many months or years, and approaching death can be difficult to predict. Unlike patients dying with cancer, for example, people with dementia are often unable to communicate with family or express their wishes. They may be mute and immobile. Because of the long, slow, deteriorating progress of the illness, the family may have been grieving for a long time, and some families have already begun to emotionally separate from their relative. A major concern of many families is providing appropriate, but not aggressive, medical care for a person with dementia who is nearing the end of life. Nursing homes may have unwritten policies that are not discussed with families. These policies may include transferring a dying patient to an acute hospital against family wishes, or not calling the ambulance until morningin effect) letting the person die (see ch. 5) (9). Facilities with such unwritten policies do not take into consideration the wishes of the family.

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254 Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias RESIDENTIAL At some point in a dementing illness, many individuals and families need long-term residential (institutional) care. Such care is most often provided by intermediate and skilled nursing homes. In what ways should these offer persons with dementia special services or specialized care? and in what ways is their care the same as that for other persons with chronic illnesses? Although these facilities have always cared for persons with dementia, some are now developing special units or offering special services. Foster Homes, Domiciliary Care, and Boarding Homes Few residential facilities other than nursing homes specialize in the care of persons with dementia (see boxes 7-K and 7-L for descriptions of SPECIAL CARE two such programs). Those that do cite limited regulation as one reason they are able to devise creative programs at costs competitive with nursing homes, although as discussed below, that absence of regulation can be exploited by less scrupulous programs. The Johns Hopkins Hospital in Baltimore operates an adult foster care program that accepts some persons with dementia (69). In Michigan, two foster care homes accept persons with dementia. Illinois reports that a small group home there accepts persons with dementia for short stays (l). Facilities such as these can offer clients individual attention, a day filled with activities, a sense of safety and security, and a life much closer to normal than that in a larger facility. Although residents in both the Suncoast Institute and the Valenti centers are visibly impaired, the behavioral problems commonly seen in boardinghouses and nursing homesapathy, drowsiness, pacing, screaming, aggression, absence of initiative, and lack of humorare not evident (although both report that these occasionally occur). These programs report that quality boarding home care for persons in the middle stages of their illness is possible. However, such homes are extremely rare. The norm, unfortunately, is substandard facilities that offer no special services and only minimal services that are not appropri-

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Ch. 7Programs and Services That Specialize in the Care of Persons With Dementia l 255 ate for clients with dementia. Boarding homes rarely employ a nurse (although the two profiled programs do), nor do they provide activities or adequate supervision. Special facilities can provide a level of supervision and care that is higher than that of most other boarding homes. Although they can provide excellent care for a portion of a persons illness, however, they are neither safe nor appropriate for very ill individuals. California recently passed legislation addressing quality assurance in board and care (Senate Bill 185). It calls for the development of three levels of care: basic care and supervision, nonmedical personal care, and health-related assistance. The legislation provides for standards and supervision designed to ensure the facilitys ability to serve clients at each level of care they intend to offer. As noted, the same absence of regulation that allows creative programming by dedicated staff can also allow unscrupulous operators to take advantage of individuals with dementia. Although family members are urging the expansion of boarding facilities, many State regulations governing these facilities are lax or absent. If such care is not to be funded by the State, or costs less than nursing home care, some States may overlook the potential for abuse. Even dedicated providers can make mistakes. One operator is known to have established a step down unit for more severely impaired individuals. These residents appeared to be receiving excellent care, and their families were reportedly satisfied. Although the facility had smoke alarms and exterior fire escapes, however, the residents could not assist in their own evacuation in the event of fire and therefore were in an unsafe situation. Another problem with boarding homes is cost: The profiled facilities are competing successfully with private pay nursing home care and offering excellent programming and professional care, yet no evidence indicates that this kind of care can be provided at rates for boarding homes paid for by Supplemental Security Income (SSI) or the Veterans Administration (VA). Finally, good quality boarding care is so rare that many families may not be aware of it. Five percent of the respondents in the OTA study had used boarding home care and only 25 percent identified it as most important. Both the California facility and the one in Pennsylvania were at or near capacity, suggesting that there may be a n unmet demand. Special Units in Nursing Homes A rapidly growing and controversial program is the development in nursing homes of long-term care units that specialize in the care of persons with dementia. Both the for-profit and the nonprofit sectors are hiring experts, establishing planning committees, holding conferences (66), and opening special units. Some are drafting national guidelines or local standards (14). Some have developed policy and procedures documents (50). Others have not segregated the residents, but offer them special programs in regular units (86). Special nursing home units are being developed largely in response to the belief that they foster better care and, conversely, that nursing home residents who do not have a dementing illness prefer separate living space. But these reasons do not fully account for the rapid development of special units. Some people in the nursing home industry see separate units as good marketing strategy, and some argue that individuals with dementia are easier to care for in a special setting where they are all together. There are many persons with dementia in nursing homes (92), but traditional forms of care have failed to successfully treat behavioral problems. One survey of 42 skilled nursing facilities (1,139 patients) found that 64 percent of residents had significant behavioral problems (102), Some specialized programs report successful reduction of these behaviors (16,18). Major differences have been noted in the amount and type of changes facilities have made for residents with dementia. Some units appear no different from the other units of a facility; others have significant changes in structure or decor, in staffing and staff training, in the amount

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256 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias and type of services offered, in admission procedures, and in the appearance of residents. Most notable is the variation in what experts perceive these individuals need. For example, some propose that the units be painted in bright primary colors, but others suggest all white, and still others propose pastels. Arguments are buttressed with theories of cognition. Less trivial differences of opinion involve philosophy, staff-to-patient ratios, floor plans, and the number of persons on a unit. Decisions about these factors can represent significant investments for the facilities. Rigorous comparative study is needed to resolve such controversies. Availability and Costs The number of special nursing home units open or planned is unknown; OTA found 110 facilities, Specialists in the field report that they frequently hear of new units being developed (5,37)70). Based on this information, and on the opinions of those in the industry, it can be estimated that fewer than 500 special units are developed or close to completion, although more are being planned. A major for-profit chain, Hillhaven Corp., has a full-time employee to set up special units. The corporation has opened 49 units, and one facility is devoted entirely to persons with dementia. Nonprofit organizations are also involved in developing special programs. The Hebrew Home for the Aged at Riverdale (Riverdale, NY) surveyed 38 homes that provide special services or have a special unit (95). AAHA is developing resources for facilities that are opening special units. Despite the growing movement to create such units, they serve only a small portion of the large number of persons with dementia who live in nursing homes; an estimated 60 to 74 percent of nursing home residents in traditional mixed units have dementia (8,83). Even when a facility has a special unit for some residents, a majority of other residents in the facility also have dementia. Some home health agencies and nursing homes offering special care accept only those who can pay for care privately, excluding those whose care is covered by Medicaid. These programs report that they cannot provide quality care for persons with dementia at Medicaids low payment rates. Little information is available on the costs of special care. Because changes in cost are partially tied to changes in the physical plant, extent of programming, and staffing, they can vary according to the facilitys perception of what constitutes a special unit. Care approaches vary so widely that costs for individual programs cannot be assumed to be representative, but most units report costs of $5 to $10 per day higher than for standard care, although some excellent programs report no difference, and in fact, cost significantly less than other special units. Some programs, both for-profit and not-for-profit, have cost information that is not publicly available. In a report on the special residential unit, Wesley Hall in Michigan, an OTA contractor wrote: residents have consistently scored on the Mental Status Questionnaire by Kehn, et al. (1960), in the range of 0-2, placing them in the category of the severely impaired. At the time of the completion of the project [12/85], daily costs to residents of the old age home unit were $29.70; Wesley Hall residents paid $42.65 a day; and the nursing home section cost $60.00 per day (18). The consensus is that good care in special units requires more staffing and better-trained staff, and probably more square feet per patient than required by Medicare, Medicaid, or State standards. Some clinicians argue that residents of special units exhibit fewer disturbed behaviors and therefore will use less nursing time than in mixed facilities, and that changes in staffing patterns and task assignment will increase efficiency (26). But it is unlikely that good care can be provided to these difficult individuals with staff-to-resident ratios lower than current minimums. Good studies of cost are urgently needed, but must await a determination of what components are necessary or ideal in a special unit. Architectural Design The architectural design of special units is controversial. The most common nursing home design is a long corridor with double rooms opening onto it. There is often a small room for visitors. Meals are eaten in a large communal dining hall

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Ch. 7Programs and Services That Specialize in the Care of Persons With Dementia l 257 and activities are conducted in a separate area. Each unit has a nurses station similar to those in hospitals. This design is thought to be detrimental to the functioning of persons with dementia. It discourages social functioning, it is disorienting and noisy, and the communal dining room overstresses people with dementia (17,18). A racetrack design has been proposed for persons with dementia (65). The buildings corridor is circular, encouraging the resident with dementia to wander in safety. But the design probably discourages social functioning and orientation. The Philadelphia Geriatric Center has a large central room with residents rooms opening onto it (55). That arrangement encouraged social interaction and simplified supervision. Some of the programs observed by OTA were smallfrom 8 to 15 residents (6,18). Residents had small single rooms. There were one or two small sitting rooms that also served as dining areas and activity spaces. It is easier for residents to orient themselves and to interact with others on small units. Small dining rooms are quieter and less confusing. This type of setting helps people relax so that they can regain old skills or make friends. The industry reports that this design is expensive, although it is not yet clear that variations, such as groups of clusters, would be significantly costlier than traditional units. Many facilities emphasize the importance of access to a secure outside area where residents may walk, keep a pet, grow flowers, or enjoy the sun. Outside exercise is thought to contribute to the restoration of normal sleep cycles. Most nursing homes planning a special dementia unit are restricted by the design of the existing building. Some convert a resident room into a sitting room or locate the unit at the end of a corridor where it can be cut off from traffic through the facility. The resulting loss of bed space increases costs. Interior Decor Successful programs have encouraged residents and families to furnish rooms extensively with the residents own possessions. That appears to help them to accept that they live there. Administrators in some facilities argue that personal possessions will be stolen, although small special units report that this has not been a problem. The smaller units and higher staff ratio probably prevent that problem. Controlling resident egress is a significant concern for institutions caring for wandering individuals, Locked doors may be forbidden by fire codes. While some facilities use buzzers that sound when doors are opened, others report that this system caused staff to check doors constantly. Several electronic sensing devices are now available. Facilities can be secured without locks, however, and successful units have disguised exits or located them so that residents must pass several staff persons before reaching the outside. There are several schools of thought on decor. (Although many facilities, however, decorate according to their expectation of the familys taste, not the residents needs.) Low stimulus decorating means reducing visual stimulicolor, decorations, clutteras much as possible. A pastel decor is a variation of that school of thought. In contrast, Wesley Hall at the University of Michigan uses bright, high-contrast colors (yellow, red, and kelly green with white) to provide visual stimulus and to help those residents who have visual problems (18). The aging eye is better able to see these colors and the contrasts help residents distinguish the boundaries between toilet and floor, or between floor and wall. The lighting level in the unit was increased and glare was reduced, again to assist the aging eye. Wesley Hall has a small kitchen where residents prepare snacks and clean up after meals. The staff uses a desk in the kitchen. There is no nurses station. These unusual components help to restore normal roles to the residentsfor example, getting oneself a glass of milk or helping to dry dishes. The absence of a nurses station helps to make the relationship of staff to residents more therapeutic. Furnishings in the most successful units visited by OTA were more home-like than in most nursing homes or hospitals. Many of the special units have no paging system, and extraneous, distracting noises such as those of the main kitchen, hallway traffic, or meal carts are reduced or eliminated. Pianos and record players are used often (18).

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258 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias There is a substantial amount of literature on the characteristics of architecture and environment that benefit the aging person (18,46,47,48, 49,55,88,89). Environmental changes must consider the visual, hearing, and gait impairments of this age group and analyze each aspect of the environment for its tendency to confuse or disorient (101). For the doubly impaired elderly person with a dementia, these factors are even more important but are frequently ignored, Step Down Units Special dementia units in nursing homes usually serve residents in the middle stages of their illnesses. As the cognitive abilities of these individuals gradually deteriorates, however, they eventually need a level of care different from that originally established by the unit. Some nursing homes transfer these residents to regular skilled nursing units; others have established step down units where these more impaired persons can still be given special sensory stimulation, passive exercise, nutrition support, and be kept as alert and physically active as possible. Characteristics of Special Programs Many of the characteristics of special programs in nursing homes and board and care homes are similar to those in day care and respite care. Characteristics of Residents The special programs reviewed by OTA were fairly consistent specifying the type of client they serve: those who were ambulatory, exhibited problem behaviors, and, in some cases, were incontinent. In general, these are people in the middle stages of a dementing illness. These individuals are capable of participating in activities and in helping to care for themselves. Some programs report that it is preferable to group residents homogeneously by severity of mental impairment. Others point out that a workable resident mix, staffing, and programming vary with the stage of the illness. Thus existing programs vary in their practices, and most focus on subgroups of these with dementia. Benefits to Residents The crucial issue of special servicesfor family members as well as the governmentis whether they are significantly better for people with dementia than other forms of care. Until recently it was assumed that little could be done for persons with dementia beyond providing for their physical needs. The recent interest in dementing disorders has focused clinicians attention on the quality of life of these persons. Some now assert that people with dementia are capable of considerable improvement in behavior, social function, and life satisfaction or happiness (6,13,16,18,60). A few programs claim that their clients improve in some respects when given special care. This idea is by no means universally accepted, however, and few practitioners are willing to accept the extent of change claimed by some of these programs. It is agreed that a persons underlying dementia cannot now be reversed, and that individuals with dementia will move toward more severe illness and eventual death. Some programs report an initial improvement in participants, followed by a gradual, but less precipitous decline. Among the changes reported are: 1. decrease in wandering (18,86); 2. decrease in episodes of agitation (18,39); 3. no screaming or a decrease in screaming (42); 4. few or no drugs needed to control behavior (18,39,90); 5. improved orientation (18,90); 6. decrease in socially unacceptable behaviors (masturbation, rummaging in other patients rooms, etc.) (18,90); 7. weight gains or improved eating (18,39,90); 8. decrease in depression (18); 9. greater ability to sleep through the night (18,39); 10. a sense of humor (18); 11. a happy, relaxed appearance (18,39); 12. the formation of friendships (18,39,61); 13. reduction or elimination of incontinence (18,96); 14. the initiation of interpersonal exchanges (18); and 15. decrease in hallucinations (39).

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Ch. 7Programs and Services That Specialize in the Care of Persons With Dementia l 259 It is noteworthy that these changes reflect either decreases in extreme disturbed behavior or increases in socially appropriate behavior. No program reports that residents consistently improved in language skills, motor skills, or memory prob lems that are likely evidence of the disease itself, rather than responses to the environment. The surprising finding that some participants can improve in certain kinds of function may have several explanations. In most experiments, the focus on the intervention and increased staff enthusiasm lead to some improvement. second, people who are severely impaired may be even more responsive to slight improvements in the environment (55). Third, this finding may also reflect the extent to which inappropriate forms of care add to resident impairment. All three factors probably contribute to the changes seen. Most clinicians agree that some of the changes listed (often the first seven) can be achieved in some individuals by maintaining them in good healththat is, by eliminating excess disability (see ch. 2). Almost all the residential programs reviewed by OTA that made some environmental changes when they created special units report improvements in their residents. Many day care centers report the same changes in some clients (61), and observation and unpublished reports from other nursing homes suggest similar results. OTA found no appropriately designed and controlled study of participant change. Anecdotal reports of partial improvement are encouraging, however, and fail to support the common position of therapeutic nihilism. OTA found no study seeking to improve psychosocial function in individuals with dementia living at home (and not in day care). The remaining eight changes were reported by fewer programs, which have served a total of only about 200 individuals. It is not known whether these results can be replicated and, if so, which patients are most likely to respond, and over how much time. The techniques for this special care are only now being developed and have not been tested. Yet the initial reports are encouraging. It is also important to note, as mentioned, that behavioral gains made by individuals receiving special care will not carry over if the special care is stopped. In some States, when individuals improve in functioning levels, they are reclassified from skilled to intermediate care and can no longer stay in the special units; they therefore will not maintain any gains. Day care clients in programs that have a rehabilitative mandate may be discharged when clients improve, setting up a revolving door pattern, with improvement under special care followed by discharge and worsening symptoms and subsequent readmission. Overall Approach to Care Since special programs and reported change vary considerably, it is premature to describe the characteristics of special programs in a final form, or to establish standards or criteria for these programs, Indeed, guidelines or standards could freeze into place approaches that may later prove less than optimal, or could block experimentation with other interventions, Further clinical experience and the replication of the most successful programs are needed. But that does not mean that nothing can he done. A considerable body of knowledge exists on the nature of dementia (53) that can be applied to techniques of care. And a good deal is known about similar patientsgeriatric patients in State hospitals (20,35,36,51) and nursing home residents in general (many of whom are demented). Finally, the overall approach to patient care is widely agreed upon (4, 10, 11,41,62,98). These findings permit some general observations on the approach of special units. The most successful programs (in residential and day care) resemble each other in key factors and strive toward common goals: l to prevent excess disability due to other health problems or medication; l to use as few psychoactive medications as possible, and use few if any, physical restraints; l to maximize an individuals ability to hear and see; to enhance remaining function rather than to restore function lost through the disease process; l to reduce long hours of idleness; l to use activities and a caregiving style that enhance resident comprehension of appropriate roles as friend, parent, or volunteer,

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260 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias l l l l l and that reinforce a sense of personhood and dignity; to create a homey environment in which residents are dressed and well groomed; to use a mixture of flexibility, creativity, and both structured and nonstructured approaches of activities; to emphasize the importance of respect for residents and to individualize approaches; to recognize the importance of environmental accommodation and the significance of a benign, nonstressful, supportive environment; and to support the family in a continuing relationship with the resident. One observer of special unit residents reports: spontaneous interaction between and among residents, staff, and visitors joy or the manifestations of joysmiling, laughter (13). The director of Wesley Hall reports residents who appear happy, exhibit spontaneous laughter, and initiate communication with staff and other residents. This unit also has successfully experimented with clowning and focused on the role of humor (17). Staff The way a facilitys staff relates to residents clearly affects behavior (38). For much of their illness, persons with Alzheimers disease seem to retain the capacity to read nonverbal communication correctly (26). That has important clinical implications: Staff members who are hurried or irritable, or who belittle a person, may trigger behavioral outbursts. Programs in which staff members talk down to participants tend to produce patients who either become stubborn or behaviorally regressed. Staff approaches should be cheerful and calm, allowing patients to make what decisions they are able to. Changing staff behavior toward residents raises several problems often reported in connection with nursing homes: the need for a motivated, concerned administration; for adequate staff salaries commensurate with the tasks required; and for a stable, adequately trained staff (see ch. 9) (26). The existing special units have attracted professionals and nurses aides who wanted a psychological and emotional challenge, who want to be able to give to others (80), and who enjoy the rewards of community interest and the administrations enthusiasm. Initial training and strong, ongoing support appear to be necessary for staff to work successfully on these units. Several training packages are being prepared or planned (13,17,26,38,45,79,101). The philosophy, techniques, and objectives of these training materials differ, but most emphasize the need for all staff members to be trained administrators, nurses aides, therapists, and even housekeeping, dietary, and janitorial personnel. (Housekeeping staff, for example, spend significant amounts of time with residents and therefore affect behavior (44)). A team approach with communication among staff members and across shifts is emphasized (26). Some programs report that staff members can work on a dementia unit regularly, rather than rotate on and off, if given adequate support. Contrary to the prediction that the staff on all dementia units would burn out, some programs have found lower turnover among the staff of special units. Other programs, however, report problems with staff burnout. Consistent staffing seems to be reassuring to the residents. Staff members develop expertise, and they learn the habits of individuals (26). Persons with dementia usually have a mixture of social and medical needs. The emphasis on social v. medical needs is influenced by the severity of the resident medical problems. Successful programs have staff members with differing expertise who work together as a team. The delivery of a persons care is provided by nonprofessional nurses aides just as in traditional nursing homes. with training and ongoing support, aides have provided excellent care in special units. One recent book gives instructions and guidance for this group of caregivers (38), and a second addresses nursing staff (26). The optimal ratio of staff to residents has not been established. Needed levels probably will vary with severity of participant impairment. Wesley Hall reports a day shift staff-to-resident ratio of 1 to 4.4 (18). Green Hills Center reports a day shift

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Ch. 7Programs and Services That Specialize in the Care of Persons With Dementia l 261 ratio of 1 to 5.8 (90). The ratio in programs examined by OTA varied considerably, but most reported a ratio of no more than 1 to 10, better than the minimum ratio required for licensure in most States. In addition, some programs augment the effective ratio by using trained volunteers to accompany wanderers, or to give one-to-one attention to some individuals during exercises, meals, or activities. The cognitive difficulties of persons with dementia become a factor when staff members are suspected of robbing or abusing someone. An employee cannot be fired on the basis of a charge by a person who is not mentally competent. Yet retaining such a person may jeopardize residents who cannot complain. At the same time, persons with dementia can erroneously charge that they have been robbed or abused (see ch. 2). In special facilities where all the potential witnesses are cognitively impaired, steps will be needed to ensure the quality of employees and to protect both employees and residents. Activities Some believe there is a relationship between the number of hours of completely unstructured idle time and some behavioral problems such as wandering and perservation (59). Because persons with dementia are unable to initiate and plan independently, most new programs reduce the number of hours that the client is idle. Programs are developing varied philosophies about activities, but all agree that activities are a key part of success. Activities cannot be limited to games offered by a nonprofessional for a few hours a week if they are to benefit individuals with a dementing disorder. Some programs fill a good part of the day with structured tasks. There is also evidence, though, that structured programming should allow flexibility and spontaneity (18,101). People with dementia live from moment to momenta truly existential life. Therefore, programming for them should be designed to be enjoyable at the moment, possibly leaving some good feeling retained, rather than being designed to produce a worthwhile product or provide later satisfaction (26). Some programs use projects that allow their clients to work as volunteers or for pay: stuffing envelopes, assembling garnishes for the main kitchen, etc. One program reports that trips and outings reduce agitation (84). Activities must be meaningful to the client, must be voluntary, and must offer the client a reasonable chance for success (58). They must address the clients personal and psychosocial needs, and their purpose must be obvious to the person with dementia (101). In Wesley Hall, activities that enable residents to assume old rolessuch as homemaker, friend, or volunteerare emphasized. Exercise, music, personal grooming, housekeeping, preparation of snacks, repetitive, rhythmic activities, visits from children or pets, and simple volunteer tasks have been recommended (18)61,101). Reality orientation is offered in most programs for persons with dementia, although its usefulness is debated. The term has been applied to several different techniques, some of which are more beneficial than others (26). In general, it is agreed that persons with irreversible dementia will not relearn information but do benefit from a program that gives frequent multiple cues for orientation. Meals Persons with dementing illnesses may fail to eat or may eat only one kind of food. They need good nutritional planning, food that enhances sensory information, and a supportive environment. Several programs report that midmorning, midafter noon, and bedtime snacks are helpful. Behavior Management Techniques for managing the inappropriate behaviors of special unit residents are as varied as the models of the physical plant (12,18,26,31,40, 42). What is most striking is that many units have successfully reduced problem behaviors, but even the most successful programs report that these behaviors still occur occasionally. At Wesley Hall, in addition to planned activities and changes in the physical environment, several staff techniques are used: first, to divert the individual; when unsuccessful, to withdraw and try later; to use touch and a sympathetic approach; to reinterpret the

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262 l Losing a Million Minds: Confronting the Tragedy of Alzheimers Disease and Other Dementias behavior as normal (e.g., if a staff member acts in an authoritarian way, it is normal for the client to resist); and to use humor and a lighthearted approach (18). Others point out that responses to problematic behaviors cannot be set out in a formula basis. Flexibility and variety are essential qualities which staff must maintain in caring for the [dementia] patient (13). Problem behaviors are greatly reduced when the environment orients participants and when meaningful activities fill their time. The quality of the interpersonal relationships between staff and participants may be at least as important as techniques of behavior management. Management of Incontinence Incontinence is often assumed to be a symptom of dementia, It has been reported as 3.5 times more common in persons with dementia than in persons without dementia; the causes of this dysfunction have not been reported and are rarely evaluated. The problem can lead to further withdrawal and isolation, skin breakdown, and infections (96). Traditional nursing home care has focused on containment, not reversal of the problem. Many things other than a persons dementia can prevent that person from being continent: medications, too little fluid, diuretics such as coffee in the diet, inability to get to a toilet in time, chair design (causing problems getting up out of it), lack of a well-lighted and visible path to the toilet, loss of eyeglasses, inaccessibility of a walker or cane, insufficient visual contrast to distinguish the toilet, fecal impaction, and urinary tract infections, In addition, cognitively impaired elderly individuals have the same causes of urinary problems as other elderly persons, and may also respond to social cues of appropriate behavior (96). People who still have problems are successfully managed in many day care programs by being taken to the toilet every 2 hours or on individualized toilet schedules. Many of the unacceptable behaviors that accompany incontinence result from the persons confusion or from inappropriate care that can be easily avoided. Four of the eleven residents in Wesley Hall had been incontinent before admission, but after several months in the unit this was no longer a problem (18). A best-guess clinical estimate is that at least 50 percent of cognitively impaired elderly individuals with loss of urine control could regain control (96). Application of Technologies to Care Little has been done to identify ways in which technologies developed for other uses could be applied to the care of persons with dementia. The application of technologies to care does not necessarily imply that there will be less compassionate or less humane care to these individuals. It may free caregivers from routine tasks and allow them to provide more supportive activities or social experiences. Research Triangle Institute, for example, assessed the feasibility of a wandering notification system, sponsored by the Administration on Aging, National Aeronautics and Space Administration, National Institute on Aging, the National Institute for Handicapped Research, and the Veterans Administration (82). Families would also benefit from more efficient methods for managing human wastes in persons who are incontinent. Devices to prevent a person with dementia from turning on a stove, technologies that would enable a caregiver to locate the person who had wandered away, more efficient equipment to enable a frail careg