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Technology and Aging in America June 1985 NTIS order #PB86-116514
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Recommended Citation: Technology and Aging America (Washington, DC: U.S. Congress, Office of Technology Assessment, OTA-BA-264, June 1985). Library of Congress Catalog Card Number 84-601137 For sale by the Superintendent of Documents U.S. Government Printing Office, Washington, DC 20402
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Foreword Rapid technological change in American society has been accompanied by accelerating growth of the population over 65. Older persons now outnumber teenagers in the United States; by 2025 the ratio will be more than 2 to 1 and the older population will have notably larger proportions in the oldest ages. New challenges will face the public and private sectors in both responding to the needs and utilizing the resources of older Americans. This assessment was requested by the Senate Special Committee on Aging and the House Select Committee on Aging. A letter of endorsement was received from the House Committee on Education and Labor. The study focuses on the functional status of the elderly and ways in which technology can assist them to maintain their independence and enhance their quality of life. Recent significant improvements in longevity of the elderly have led to rising prevalence of chronic diseases that impair their ability to function independently. The report discusses five chronic conditions that severely affect older persons-steoarthritis, dementia, osteoporosis, hearing impairments, and urinary incontinence. The potential health improvements from behaviors that may delay the onset of chronic diseases, the need for increased biomedical research into the causes of these diseases, and methods to encourage behaviors that promote health are also reviewed. Special attention is given to the potential impact of telecommunications in the home and community in promoting self -health care among the elderly. The importance of medication for management of chronic impairments is also assessed, but much remains unknown about the particular effects of drugs on older persons. The report stresses the need for a coordinated approach to long-term care and improved technologies to assess health and functional status. A wider range of options for supportive services and settings would more appropriately respond to the different needs among the older population. Because Federal and State reimbursement policies influence the availability of health and longterm care services, changes in reimbursement criteria can promote such options. The housing and living environment of the elderly are also described. Federal programs that subsidize rental housing for the elderly could pay greater attention to coordination of community-based services with these housing programs. New design standards that promote safety and improve the elderlys ability to be self-sufficient are also stressed. Modern construction technologies more easily allow existing singlefamily units to be renovated for the elderly. Shared housing, residential care facilities, accessory units, and other types of residences would expand the housing choices available to older Americans. The study also evaluates the impact of changes in workplace technology, Job security may be weakened in some industries, while in others it can enhance job performance, safety, and security for older workers. Telecommunications are making the electronic cottage a reality and older persons may be able to take advantage of emerging opportunities for home-based work arrangements. Finally, the retraining of older workers would encourage continued employment or provide new employment possibilities. OTA was assisted in the preparation of this study by an advisory panel of individuals representing a wide range of backgrounds, including geriatrics, health policy, biology, gerontology, demography, economics, academia, private industry, labor, and advocacy organizations. More than 80 reviewers drawn from universities, governmental agencies, and the private sector provided helpful comments on draft reports. OTA expresses sincere appreciation to each of these individuals. As with all OTA reports, the content is the responsibility of the Office and does not necessarily constitute the consensus or endorsement of the advisory panel or the Technology Assessment Board. Director Ill
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Technology and Aging in America Advisory Panel* Robert Binstock, Panel Chair Director, Policy Center on Aging, Brandeis University Raymond Bartus Group Leader of Geriatrics Medical Research Division Lederle Laboratories Robert Berliner Dean School of Medicine Yale University Robert N, Butler Chairman Department of Geriatrics and Adult Education Mt. Sinai Medical Center Robert Clark Associate Professor Department of Economics and Business North Carolina State University Lee L. Davenport Senior Vice President-Chief Scientist, emeritus GTE Corp. Ken Dychtwald president Dychtwald & Associates Caleb Finch Professor of Biological Sciences and Gerontology University of Southern California Velma Murphy Hill Director Civil and Human Rights Division Service Employees International Union Robert L. Kane Senior Researcher The Rand Corp. Paul A. Kerschner Associate Director for Programs, Legislation and Development American Association of Retired Persons Maggie Kuhn Founder and National Convener The Gray Panthers Panel members affiliations are listed at the time the assessment began. Matt Lind Vice President Corporate Planning and Research The Travelers Insurance Co. Robert G. Lynch Vice President Marketing Planning GTE Corp. Mathy D. Mezey Director Teaching Nursing Home Program University of Pennsylvania Hamish Munro Professor of Medicine and Nutrition Tufts University Bernice Neugarten Professor of Education and Sociology Northwestern University Sara Rix Director of Research The Womens Research and Education Institute Pauline Robinson Research Professor of Gerontology University of Southern California John W. Rowe Chief of Geriatrics Beth Israel Hospital Bert Seidman Director Department of Occupational Safety, Health and Social Security AFL-CIO Jacob Siegel Senior Researcher Center for Population Research Georgetown University NOTE: OTA appreciates and is grateful for the valuable assistance and thoughtful critiques provided by the advisory panel members. The views expressed in this OTA report, however, are the sole responsibility of the Office of Technology Assessment. iv
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OTA Project StaffTechnology and Aging in America H. David Banta l and Roger C. Herdman, Assistant Director, OTA Health and Life Sciences Division Gretchen S. Kolsrud, Biological Applications Program Manager Robert A. Harootyan, Project Director David McCallum, 2 Project Director Debora E. Burch, Research Analyst Susan Clymer, Research Analyst Robert M, Cook-Deegan, Senior Analyst Catharine Maslow, Research Analyst Eleanor Pitts, Research Assistant Gloria Ruby, Analyst Louise A. Williams, Senior Analyst Phyllis Avedon, Project Editor Special Contributor s John Grana, Deputy Director, Center for Health Information, Project HOPE Zaven Khachaturian, Chief, Physiology and Aging Branch, National Institute on Aging Sheila Taube, Chief, Biochemical Diagnosis Section, National Cancer Institute Support Staff Fatimah Scott 3 and Elma Rubright, Administrative Assistant Teri Miles 4 and Linda Rayford, Secretary R. Bryan Harrison, Office Automation Systems Analyst Major Contractor s G. Becker, Aging Health Policy Center, University of California, San Francisco T. Borzilleri, Consultant on Economics and Aging C. Paul and S. Coberly, Andrus Gerontology Center, University of Southern California M. Kohrs, Consultant on Nutrition and the Elderly B. Lessard, Consultant on International Aspects of Aging R. McGandy, Human Nutrition Research Center on Aging, Tufts University J. Ouslander and Associates, Consultants on Urinary Incontinence in the Elderly B. Skurdenis, Research Consultant, Western Gerontological Society Related Activities and Product s The Impact of Technology on Long-Term Care, a workshop jointly sponsored by OTA, Project HOPE, and the National Health Policy Forum (held February 1983) Impacts of Neuroscience, OTA Background Paper Management of Hearing Impairment in the Elderly, OTA Background Paper Technologies for Managing Urinary Incontinence, OTA Case Study 1Assistant Director until August 1983. Project Director until September 1983. 3 Administrative Assistant until August 1983. Secretary until October 1983.
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Contents Chapter Page I. Executive Summary . . . . . . . . . . . 3 2.Introduction: Technological Change and the Older U.S. Population . 33 3. Selected Chronic Conditions, Technology) and Biomedical Research . 61 4. Health Promotion/Disease Prevention and Nutrition in the Elderly . . 119 5.Medications and the Elderly . . . . . . . . . . 137 6. Information Technology and the Health of an Aging Population . . 159 7.Technologies, Functional Impairment, and Long-Term Care. . . . 185 8.Health Care Costs and Access to Technology for Older Persons . . 249 9.Technology, Housing, and the Living Environment of the Elderly. . . 277 10. Workplace Technology and the Employment of Older Adults ..., . . 335 Appendixes A.Morbidity and Mortality Data. . . . . . . . . . 369 B. The Cell Biology of Aging . . . . . . . . . . 413 C. Nutrition Information . . . . . . . . . . . 421 D.Biotechnology . . . . . . . . . . . . . 447 E. Workplace Technology and the Employment of Older Adults. . . . 458 F. Glossary of Terms and Acronyms for Technology and Aging in America 479 G.List of Contractors. . . . . . . . . . . . . 485 Index . . . . . . . . . . . . . . . 489
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Chapter 1 Executive Summary
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Contents Introduction ... . ., . . . . . . . . . . . Definitions and F OCUS . . . ..., . . . . . ..., . . . Changes in Health Status . . ..., . . . . . . . Population Aging and Changes in Selected Chronic Conditions . . . . Health Promotion/Disease Prevention and Nutrition . . . . . . . Medications and the Elderly . . . . . . . . . . . . Changes in Health Services . . . . . . . . . . Information Technology and Health Care of the Elderly . . . . . Functional Impairment and Long-1erm Care . . . . . . . Health Care Costs . . . . . . . . . . . . . . Social Changes in the Living Environironment . . . . . . . . . Housing and the Living Environment ., . . . . . . . . . Work-Related Changes . . . . . . . . . . . . . Workplace Technology and the Employment of older Adults . . . . . Conclusion . . . . . . . . . . . . Figures Page 3 7 7 7 10 13 15 15 18 21 22 23 24 27 30 FigureNo. Page 1. Number of Teenagers and Older Persons, United States, 1970-,2050 . . . 3 2. Fertility Rates per 1,000 Women Aged 15 to 44 Years, United States, 1930-82 . 5 3. Infant and Neonatal Mortality Rates, United States, 1930 -82., . . . . 5 4. Crude and Age-Adjusted Death Rates, United States, 1930 -82. . . . . 6
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Chapter 1 Executive Summary Introduction This century is witnessing unprecedented demographic and technological changes in American society. There have been significant gains in life expectancy, both at birth and at the older ages. Declining fertility rates have aged the U.S. population, and there have been major improvements in health status. By 1980, for the first time in the history of the United States, 50 percent of all Americans were over 30. Today there are more persons over 65 than there are teenagers. The elderly population has grown from 4.0 percent of the total in 1900 to mm-e than 11.5 percent in 1983. The number of those over 65 is projected to grow from todays 27 million-to an estimated 39.3 million by 2010, when they will constitute almost 14 percent of the Nations population. More significantly, between 2010 and 2020 the older population is expected to increase by more than 12 million, when the first wave of the baby boom cohort becomes the elderly boom of the future. By 2025 there will be more than twice as many older Americans as teenagers (see fig. 1). These demographic trends are due in large part to technological changes since 1900-changes whose pace is accelerating. This technological revolution has major implications for all aspects of society. During this century, improved technologies have increased life expectancy at birth from an average of 47 years in 1900 to more than 74 years in 1982, These technological improvements inFor purposes of this assessment, the elderly population is generally defined as all persons aged 65 and over, although in designated cases the age identifier can be as low as 40 years or as high as 85 years (the very old). Technology is broadly defined here to include the development of knowledge and its application to solving practical tasks and problems; it also refers to such factors as biomedical research into the causes of arthritic conditions, as well as wheelchairs used by persons suffering from severe arthritis. Technology can be soft (research and knowledge) or hard (products of research), and high (complex) or (low (simple), elude advances in public hygiene and sanitation, reductions in the prevalence of infectious diseases through immunization and antibiotics, and the continued improvement and accessibility of general health care to all persons. The effects of these advances have been most noticeable at the earliest ages, where dramatic improvements have increased the probability of surviving beyond the first year of life. Almost four-fifths of all babies born this year can expect to live to age 65; only two-fifths of babies born in 1900 could expect to do 80, More recent technological advances have helped reduce mortality rates at the older ages. During the past 15 years, sharp reductions in death rates from two major killers-heart disease Figure l. Number of Teenagers (Aged 13 to 19) and Older Persons (Aged 65 and Over), United States, 1970-2050 (number in millions) Number 70 60 50 40 2050 Year SOURCE: Population Reference Bureau, Population Today, vol. 12, No. 1, January 1984. 3
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4 l Technology and Aging in America and strokehave caused mortality rates among the elderly to plummet. Death rates fell more sharply during this period than during any 15year period in U.S. history. More than half of the improvement in life expectancy for the elderly since 1950 has occurred in the past decade. Recent age-specific mortality rates indicate that this accelerating pace of improvement in life expectancy at older ages will continue for the foreseeable future. The most dramatic changes are the increases in the proportions of people surviving to the oldest ages (i.e., 75 or 85 years). Other technologies may lead to changes in the aging of cells that could have consequences for the human life span ) 3 as discussed in chapter 2. The (newness) and swift pace of these gains in life expectancy at older ages signify a new era in the changing demographic structure of the United States that has important consequences for all aspects of society. This era is also characterized by rapid technological advances in the ability to plan fertility 4 (e.g., oral contraceptives, intrauterine devices), enabling individuals to more closely realize their childbearing preferences. The post-World War II baby boom was abruptly succeeded by the baby bust of the last decade. Fertility has been as important a factor as mortality in determining the changing age structure of the Nations population. Among the significant and unprecedented demographic changes of recent decades are: l l dramatically lower fertility rates among women of childbearing age, a trend that began in the late 1950s and recently stabilized at a rate below replacement level (see fig. 2); similarly dramatic reductions in infant and neonatal mortality rates 5 over more than half (Life span is the biological upper age limit that a human can potentially reach, currently considered to be about 120 years. 4Fertility is a measure of the number of live births within a population, such as number of births per 1,000 women aged 1544. Fertility measures do not account for stillbirths and aborted pregnancies, whether induced or spontaneous. The current U.S. infant mortality rate of 10.9 (deaths to infants under 1 year of age per 1,000 live births) ranks 14th in the world, The lowest rates are 6.5 in Finland and 6.8 in Sweden, while many developing countries have rates well above 100 (e.g., 134 in Nigeria and 153 in Liberia). Thus, the relative possible improvement in the U.S. infant mortality rate is very small when compared with rates in most other countries. l a century that are approaching an expected minimum possible level (see fig. 3); and sharp declines in the age-adjusted death rates 6 of the total population since 1930 (see fig. 4). In combination, these demographic trends have produced an aging population that is characterized by accelerating increases in life expectancy at the oldest ages. Moreover, the gains in life expectancy at birth and at older ages have consistently been greater for females than males; there are now 5 million more older women than older men in the United States. The effect of technology on population structure is expected to continue. For example, the median age, which rose only 0.6 years between 1960 and 1980, is expected to rise by 3.3 years between 1980 and 2000. That this significant demographic shift will occur during such a short interval underscores the increasing pace of population aging in the United States. Potential consequences include changes in the structure of families, more older persons living alone (four-fifths of them women), more older workers, and a growing market for services and products to the elderly. In general, this profound demographic transformation is likely to change both the resources older persons have to offer and the allocation of resources offered to them. These changes may occur even faster than is currently anticipated. Previous demographic projections have underestimated the rate of change in population aging due in part to difficulties in anticipating the development of new technologies and their short= and long-term effects on fertility and mortality. 7 The phenomeIn contrast to crude rates, (age-adjusted rates control for the effects of age-structure differences in a population over a period of time. Analogous to the use of constant dollars in economic analyses, they are the best indicators of actual change in demographic rates over time. The Bureau of the Census projections for the older population have consistently underestimated the number of older persons in future decades. For example, in 1977 the bureau attempted to account for changing mortality rates among the elderly by increasing its 1975 projections of the older population for 2000 from 28.8 million to 31.9 million. The latest revisions are for almost 34.1 million elderly in 2000. In less than a decade the projections of this population have been increased by 18 percent in response to the most recent effects of technological advances in health and medical care.
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Ch. IExecutive Summary 5 130 120 0 0 0. 80 T ) 70 6( Figure 2.Fertility Rates per 1,000 Women Aged 15 to 44 Years, United States, 1930-82 130 120 110 100 90 80 70 60 0 0 1940 1950 1960 1970 1980 1990 1930 Year SOURCE: National Center for Health Statistics, Annual Summary of Births, Deaths, Marriages, and Divorces: United States. 1982. Monthly Vital Statistics Report, vol. 31, no. 13, DHHS publication No. (PHS)83-1 120 (Hyatts-. ..., vine, MD: Public Health Service, October 1983). > 0 0 0 70 60 50 40 30 20 10 0 Figure 3.infant (Under 1 Year) and Neonatal (Under 28 Days) Mortality Rates, United States, 1930-82 7 0 0 1930 1940 1950 1960 1970 1980 1990 Year SOURCE: National Center for Health Statistics, Annual Summary of Births, Deaths, Marriages, and Divorces: United States, 1982, Monthly Vital Statistics Report, vol. 31, no. 13, DHHS publication No. (PHS)83-1 120 (Hyattsville, MD: Public Health Service, October 1983).
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6 Technology and Aging in America Figure 4.-Crude and Age-Adjusted Death Rates, United States, 1930.82 1,300 1,200 1,100 1,000 900 800 700 600 500 0 0 1930 1940 1950 1960 1970 1980 1990 Year SOURCE: National Center for Health Statistics, Annual Summary of Births, Deaths, Marriages, and Divorces: United States, 1982, Monthly Vital Statitics Report, vol. 31, no. 13, DHHS publication No. (PHS)83-1 120 (Hyattsville, MD: Public Health Service, October 1983). nal pace of current changes is readily apparent in other areas of technology. For example, a microprocessor measuring less than 3 inches on a side now has the capability of a computer that 20 years ago was the size of an average business office. The rate of increase in storage capacity of computer memory chips has been exponential, rising from the 1-bit chip in 1970 to todays current chip with more than 250,000 bits; recent development of an experimental l-million-bit chip indicates that its commercial mass production is only a few years away. Dramatic technological changes such as these have future consequences that can only be partly envisioned. Similarly, although the societal effects of technological change and the aging of the population are only partly foreseeable, they are likely to be felt in various ways: l Changes in health status. The prevalence of chronic illnesses and attendant functional im l l l pairments among the elderly will rise as the proportions of those in the oldest subgroups increase. Changes in health services. The need for social and health care services (i.e., long-term care) for chronic conditions will grow, as will the demand for medical care for treatment of acute illnesses. Social changes in the living environment. Significant changes are expected in family structure, living arrangements, and the housing environment of the elderly; more older persons will live alone, and people over 55 will be more likely to have a very old parent still alive. Work-related changes. older workers may be particularly vulnerable to the impact of new methods of production and workplace technologies, and to changes in the skills required of the labor force.
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Ch. IExecutive Summary 7 This assessment describes the reciprocal relasummarizes the major components of this study tionship between technology and aging in Amerand highlights its major findings. Selected issues ica by focusing on these four general topics. arising from each area are presented for congresChanges in these areas are interdependent and sional consideration. Full development of the offer both broad challenges and striking opporissues and possible congressional options are contunities to society. The balance of this chapter tained in chapters 3 through 10. Definitions and focus In keeping with congressional requests and the advice of the Technology and Aging Advisory Panel, the term technology is broadly defined in this assessment. It is viewed as both a collection of devices or gadgets (i.e., hard technology) and the development of knowledge or an organizational system (i.e., soft technology). The two types of technology form the ends of a continuum. Within the continuum, the most relevant types of technology have been selected for each of the substantive areas. Knowledge and research are thus stressed in some instances, and hardware and devices in others. Another dimension of technology is its degree of complexity, which can range from simple lowtechnology devices such as stair safety treads to complex high-technologyl equipment such as the computerized axial tomography (CAT) scan used for medical diagnosis. The range of technological complexity and types leads to different approaches and findings for each major subject of this assessment, which accordingly covers a variety of issues and options for congressional consideration. A general theme, however, prevails throughout. The most important variable in this assessment of the relationship between technology and aging is the physical and mental functioning of older persons. Most people do not fear (growing old so much as they fear becoming chronically ill or frail The vitality ) of older people-their ability to remain functionally independent, or to be minimally dependent on various types of assistance-is the fundamental characteristic that determines their quality of life at home, in the workplace, and within the community. The extent to which various technologies can improve the ability of older persons to maintain this vitality is a major focus of this report. Changes in health status population aging and changes in diseases of the heart and blood vessels have also begun to change as a result of diet, personal hab selected chronic conditions its, and improved health care. If these trends conThe second half of the 20th century has seen tinue, several predictions can be made: a dramatic shift in the types of diseases afflicting l people, especially in technologically advanced countries. The incidence of many infectious disl eases has fallen sharply as sanitation has improved and vaccines have been developed; many l of the remaining infectious diseases can be effectively treated with antibiotics. Death rates from l These issues are examined in detail in chs. 2 and 3 and app. A. life expectancy at older ages will continue to rise, as will the median age of the population; diseases whose incidence rises with age will become more prevalent; environmental, behavioral, and dietary factors affecting health may become more important because individuals will live through longer periods of exposure and have more time to develop symptoms; and
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8 l Technology and Aging in America new and unexpected medical problems may appear. As death rates from vascular diseases decline, the prevalence of other chronic health conditions such as dementia, arthritis, cancer, deafness, poor vision, and other currently incurable and unpreventable ailments is likely to increase. The progression from infectious to cardiovascular to other chronic conditions has followed the path of clinical ignorance; the disorders that are now most common are those about which the least is knowm Far more is understood about the cause of tuberculosis (now rare) than about the causes of Alzheimer disease* (the most common disorder causing dementia among the elderly). There are four general strategies for dealing with chronic health conditions: treatment of acute episodes of illness arising from underlying chronic illness; l long-term medical treatment or long-term care; l prevention; or l research to improve diagnosis, treatment, and prevention. Each of these strategies is influenced by Federal policy; a balanced approach is required for effective control of chronic disease. Current Federal policy tends to favor acute care over preventive strategies, long-term care, or research. In surveying the conditions that most affect the elderly population of the United States, OTA, with the assistance of the Technology and Aging Advisory Panel, chose five conditions as especially worthy of review, using the following seven criteria: l l l the condition is an important cause of death and disability among the elderly population due to severity or prevalence; the condition is chronic and persistent among the elderly; the impact on caregivers, including family members and friends, is a significant hardship; This assessment uses the term A1zheimer disease (instead of the more familiar Alzheimers disease) in accord with recommended usage by the American Academy of Neurology and the American Neurological Association and their respective journals. l the condition contributes to functional impairment and the demand for long-term care, a major focus of this assessment; l easily readable and up-todate summaries of the state of science and medicine regarding the condition are not readily available; l technology is relevant to correction of or compensation for the condition; and l Congress has recently demonstrated a special interest in the condition. The five chronic conditions reviewed are de mentia, urinary incontinence, hearing impair ment, osteoporosis, and osteoarthritis Dementia was selected because Alzheimer disease and other dementing illnesses will become overwhelming health problems unless means for prevention or treatment are found. These diseases are severe, affect an important aspect of human functionmental ability-and are the most common determinants of need for long-term care. There are as yet no reliable or specific means of accurately diagnosing dementing disorders, although improvements have been rapid in recent years. Further, these disorders are probably not single entities, but combinations of related but biologically distinct diseases that have not yet been scientifically differentiated. The main policy options relating to Alzheimer disease and dementia thus concern long-term care for demented patients and biomedical research. Although the ultimate solutions to dementing illness must come from research, they are not likely to be achieved in the short term, despite recent advances in knowledge of these conditions; the problem of caring for demented patients for the final years of their lives will be very great for a number of years to come. The social and economic value of successful research in this area is enormous. Urinary incontinence is a growing problem among the elderly, and is another major reason for institutionalization. It is a common symptom of different neurological, endocrine, vascular, and urological diseases that can now be treated with technologies ranging from absorbent pads to sophisticated mechanical devices and surgery. Difficulty persists in diagnosing the condition among the noninstitutionalized elderly, who often do not
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Ch. IExecutive Summary l 9 seek medical attention or do not admit to what can be an embarrassing problem. Because many of the relevant technologies are just coming to fruition, incontinence should be far more effectively treated or managed in the future. g Discussion of the problem of incontinence and potential policy issues centers on the substantial delay in developing appropriate technologies, as well as possible drawbacks of present technologies. Improvements in this area could notably reduce the nursing home population and permit families to directly care for their incontinent dependents for a longer period of time. Equally important would be the great improvement in the quality of patients lives. Hearing impairments affect almost 30 percent of all older Americans; 23 percent of those aged 65 to 74 and almost 40 percent of those over 75 suffer some hearing loss. Most hearing impairments of the elderly cannot be corrected with available medical or surgical techniques, but technologies such as hearing aids and assistive listening devices can compensate for some forms of hearing loss. But the adaptation of appropriate technology to specific hearing defects of patients, especially elderly patients, has had limited success. The potential for improvement of hearing is substantial if diagnosis is made early enough, if patients can be convinced of the value of correction, and if industry can adapt to better serving patients needs .10 Technological innovation in this area promises to be rapid over the next decade. Federal policy issues include assurance of patient safety in public places (e.g., mandating alarms that can warn those with hearing impairments of danger), reimbursement policy for Medicare and Medicaid (which currently offer little support for those with hearing impairments), increased regulation of the hearingdevices industry, and sponsorship of training and research. Osteoarthritis, which affects 16 million to 20 million older Americans, is the largest single cause VThis subject if more fully discussed in the forthcoming OTA case study on Technologies for Managing Urinary Incontinence (January 1985). 1JFor a detailed review, see the forthcoming OTA background paper on Management of Hearing Impairment in the Elderly Uanuary 1985). of disability among the elderly. Radiologic evidence of osteoarthritis is found in over four-fifths of persons over 70. Technological issues related to osteoarthritis include a relative lack of basic scientific knowledge about the biology of cartilage, a need for preventive strategies, the potential for reducing pain and suffering for a large proportion of patients, and the enormous expense of current therapies, particularly joint replacement surgery. Like dementia, osteoarthritis is in need of expanded research that could lead to discoveries for effective prevention and cure. Osteoporosis is a disease process involving thinning of bones. Its most devastating consequences are fractures of the vertebrae and long bones, which are especially common in elderly women. Fractures of the hip often result in death or extended periods of rehabilitation, chronic impairment, or nursing care. Current evidence suggests that osteoporotic fractures are amenable to prevention by such methods as increasing calcium intake and postmenopausal administration of estrogens, but a definitive preventive protocol has not been established because the various regimens used in routine practice have not yet been rigorously compared. SELECTED ISSUES* Effective treatment or prevention of these five chronic disorders is needed, and adaptation of technology to compensate for the ravages of chronic disabilities will be increasingly in demand in future years. For conditions that can be ameliorated by existing technologies, such as some types of hearing impairments and incontinence, the availability, application, and improvement of such technologies is a priority. Other policy considerations include possible oversight to promote increased awareness and sensitivity to the extent of chronic illnesses among the elderly and the possibilities for their management. Research on chronic diseases, however, provides the only possibility for their ultimate elimination. For this reason, two general issues merit congressional attention: *For brevity, only the most important issues for congressional consideration are presented in this chapter. These and other issues, each with a number of options, are discussed in greater detail in their respective chapters. See ch. 3 for further discussion of the issues in this section,
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10 Technology and Aging in America Should Congress increase support for basic and clinical biomedical research and for longitudinal studies on aging and chronic diseases? Should Congress exercise more or less control over the extent, direction, and selection of problem areas of basic biomedical research related to aging? Health promotion/disease prevention and nutrition An increasing body of evidence demonstrates that preventive measures begun early and maintained throughout life can significantly reduce the prevalence of acute and/or chronic disease in old age. Preventive measures are considered here in the context of persons over 65, while recognizing the importance of preventive measures throughout life. Until recently there was consensus among health professionals, and among the elderly themselves, that after 65 it was too late to think seriously about prevention of disease or disability. These attitudes are slowly changing, and health promotion is now justified on the basis of rising life expectancy after age 65 (on average, currently more than 14 years for men and 18 years for women more sophisticated definitions of health that recognize variability among and between age groups, and recent improvement in cardiovascular disease mortality due to preventive efforts (e.g., control of hypertension and elimination of smoking). The goals of health promotion/disease prevention vary with personal circumstances. For those who are ill, the hope is to maximize function and prevent deterioration; the goal of those who are well is to prevent disease or disability at any age. MORBIDITY, MORTALITY, AND RISK FACTORS RELATED TO CHRONIC DISEASES Diseases of the heart, malignant neoplasms (cancer), and cerebrovascular disease (stroke) accounted for three-fourths of all deaths among the elderly in 1981. The incidence of these major diseases remains high, but death rates from most *These issues are examined in detail in ch, 4 and app. C. have decreased for the elderly. As more older persons survive acute episodes of stroke and coronary heart disease, the prevalence of these diseases rises. Because the burden of morbidity in the older population is rising, this assessment examines the risk factors 1l that are correlated with these diseases and chronic conditions. CORONARY HEART DISEASE AND STROKE A cluster of risk factors correlates both with coronary heart disease (CHD) and stroke, Hyper= tension, or high blood pressure, is the most powerful predictor of risk for CHD; more than half of persons with myocardial infarction and three-fourths of patients with stroke have concurrent hypertension. *z Limited findings indicate that control of moderate and high diastolic hypertension in older individuals is associated with reduced mortality and morbidity from CHD and stroke, but the benefits of treatment of isolated systolic hypertension remain unclear and are under investigation. Cigarette smoking is highly correlated with mortality from cardiovascular disease; it is also a significant factor in morbidity, exacerbating hypertension (nicotine constricts the blood vessels). Hypertension, in turn, is another risk factor for CHD and stroke. Unfortunately, the elderly often succumb to the myth that smoking cessation is effective only for younger age groups. Now that those who reach 65 can expect to live an average of 16 more years, the benefits of not smoking are substantial. Programs and research on smoking cessation should be expanded to give greater emphasis to their impact on older individuals. Despite gaps in knowledge, it appears that exercise can benefit the elderly in reducing their risk of CHD and stroke. Some gerontological studies indicate that carefully developed exercise regimens for older people can reduce blood pressure and pulse rate at rest while also increasing ll Risk factor 5 are characteristics that indicate an increased likelihood of developing a given condition. They are based on statistical probabilities in large populations rather than on causal relationships or the certainty that an individual will develop a specific disease or condition. 12 Hypertension in the elderly is defined as blood pressure greater than 140/90mm Hg or isolated systolic blood pressure greater than 160, with normal diastolic blood pressure.
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Ch. IExecutive Summary 11 Photo credit: Dennis Deloria, Dancers of the Third Age, Dance Exchange, Washington, DC Properly developed exercise programs can benefit ones health at any age. aerobic capacity. Exercise reduces fat and increases lean body mass, and can promote healthy bone. Yet exercise carries certain risks and, especially for the elderly, should be gradually initiated according to individual health characteristics. The risks depend on a number of factorsgeneral health, past exercise habits, age, type and amount of exercise, and intensity of exercise. Nevertheless, when weighed against the hazards of not exercising, the benefits clearly outweigh any risks. More information needs to be developed regarding the relative risks and benefits of different levels of exercise for older persons, particularly those suffering from chronic conditions. Although stress is a normal part of life, little documentation exists regarding the prevalence, types, and effects of stress on older persons. A possible indicator of stress is the prevalence of depression, the most common mental problem among older people. Depression is one symptom of the inability to cope with stress, which can cause various types of health impairment. Stressreduction techniques such as exercise, meditation, and relaxation+an reduce the physical and psychological effects of stress. Biofeedback techniques can also help minimize the negative consequences of stress. In severe cases, prescription drugs are also effective treatments. As with exercise, a considerable body of knowledge remains to be developed regarding the specific characteristics of stress and its consequences for the elderly.
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12 Technology and Aging in America Nutrition, including intake of liquids, appears to have special significance for older persons. Poor nutrition results in a lack of essential vitamins and nutrients, which leads to physiological deficiencies. Poor nutrition can also be manifested in an excess of certain nutrients that are related to obesity, 13 to higher risk of diabetes, and to higher levels of cholesterolall of which are risk factors for CHD and stroke. Insufficient intake of liquids can lead to dehydration, which is often undetected for long periods, Among the elderly, changes in metabolism and physical activity can significantly alter the intake, absorption, and effective utilization of various nutrients. There is as yet too little information, however, on which to base Recommended Dietary Allowances (RDAs) specifically for the elderly population. It is particulary difficult to discern the longterm subclinical deficiencies that may be related to the aging process. Current Federal policy, as implemented under the older Americans Act, is designed to improve the nutritional status of the older population through the congregate meals and meals-onwheels programs. Existing evaluations of these programs are methodologically flawed and provide insufficient information about the programs effectiveness in reaching the at-risk poor and minority elderly. Future evaluations should also focus on the nutritional value of the food actually consumed rather than on just the food that is prepared. Impaired glucose tolerance is symptomatic of diabetes mellitus, which is in turn a risk factor for cardiovascular disease. Moreover, diabetes is strongly associated with obesity, especially as age increases. Drug therapy can reduce glucose levels and promote management of diabetes, but its efficacy in CHD prevention is unclear. Dietary restrictions are also used in management of CHD, but little is known about possible ways to prevent or minimize its incidence. High serum cholesterol levels, which are related to diets high in saturated fats, have recently been linked with atherosclerotic diseases of the 13 Obesity is generally defined as weight that is 20 percent higher than specified in standardized tables according to sex, age, and height. Obesity itself is associated with numerous risk factors for CHD and stroke. blood vessels. A study of men aged 35 to 59 with very high levels of cholesterol who were given drug therapy to reduce those levels found a significantly lowered incidence of CHD. However, no direct causal effect can be inferred concerning the effect of reduced dietary levels of saturated fats for those with moderately elevated cholesterol levels, since the research involved men with high levels of cholesterol who were treated with drugs. More clinical and longitudinal investigations are required to clearly understand the relationship between diet and moderately high levels of cholesterol in the older population. CANCER Cancer, the second leading cause of death among the elderly, is associated with risk factors such as smoking and diet, although it remains difficult to establish specific causal links from available analyses. If detected early enough, cancers of the prostate, breast, lung, rectum, and colon can be effectively treated. Regular medical checkups and self+xamination are very important factors in early detection of cancer. Unfortunately, some studies indicate a reluctance among the elderly to seek screening services, particularly gynecological examinations for older women. This may be due to ignorance or lack of information about new technologies and the possibilities for treatment of many diseases, including some cancers. Careful monitoring of changes in the body is important, because multiple presentations of illness in the elderly can mask the existence of some diseases and make early detection difficult. FRACTURES Osteoporosis is the cause of about two-thirds of hip fractures in older people, especially women. Research to prevent osteoporosis is centered on the effectiveness and possible risks of estrogen replacement therapy after menopause, supplemental doses of calcium for women both before and after menopause, and the role of exercise in bone-strengthening. Up to 40 percent of the elderly report suffering a fall. Two-thirds of these are estimated to be preventable, and as many as half may be caused by environmental factors such as loose rugs, poor lighting, slippery surfaces inside and outside the home, broken stairs, or lack of grab-bars in bathrooms and other high-risk
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Ch. lExecutive Summary 13 areas. The likelihood of falls is increased by underlying physical conditions such as Parkinsons disease, seizures, cerebrovascular disease, and conditions that cause fainting or dizziness (including inappropriate use of drugs). Sensory loss in hearing and vision also increase the risk of falls. The incidence of falls and the severity of their consequences for the elderly could be reduced by better diagnosis and treatment of these chronic conditions and efforts to eliminate environmental hazards. Concerted efforts are required to sensitize the general public and the elderly themselves to the possibilities for greatly reducing the risk of falls, and the suffering and expense they can cause. DENTAL DISEASE An often overlooked problem for the elderly is dental disease. In 1971, about 45 percent of Americans over 65 were estimated to have lost all of their teeth. Loss of teeth is associated with poor dental hygiene, a diet high in starches and simple sugars, and lack of regular dental care. Dental diseases, including those of the gums and bone, can have significant consequences for the general health of the elderly. Yet in 1981 approximately half of all older persons who had teeth had not visited a dentist in the previous 5 years. Improved monitoring of dental health for the elderly and the application of new technologies for prevention and treatment of dental disease should be fostered. Medicare reimbursement is not provided for any preventive dental services, which may be a reason for the extent of inadequate dental care among the elderly. SELECTED ISSUES Each of these areas of health promotion/disease prevention and nutrition requires additional information and research regarding their long-term effects on the well-being of older persons. Understanding the interaction of individual health behaviors and environmental influences for promoting health into the older ages may provide new suggestions for preventing, coping with, or at least delaying the onset of chronic diseases. A substantial research effort over an extended period of time is needed to achieve this definitive knowledge. Most current RDAs do not differentiate between subgroups over age 50. The same RDA is supplied for all ages past 50, regardless of nutritional need. In general, RDAs fail to take into account the age-related physiological, behavioral, and pathological changes that can affect the nutritional needs of those over 65. Certain nutrients are especially relevant to the aging process and should be stressed in research on elderly nutrition; these include calcium, vitamin D, B vitamins, vitamin A, zinc, sodium, and fats. other specific issues for congressional concern include these questions: l l l Does research on health promotion interventions for the elderly indicate that these interventions are cost effective? Should Medicare reimbursement categories be reconsidered with a view to increased reimbursement for health promotion/disease prevention interventions? How might Congress obtain more accurate and standardized evaluations of Federal food assistance programs in order to improve their general efficacy and their ability to reach specific target groups? Medications and the elderly* Drug treatment is an important medical technology for older individuals. Those over 65 use 30 percent of all prescription drugstwice as many as the average user. More than four-fifths of all noninstitutionalized older people use overthe-counter medications. The safety of using medications, availability of information about drugs, and new technologies that might improve how drugs are delivered and used are influenced by Federal policy. As disease prevalence rises with age, drug use increases. The elderly use the everyday drugs consumed by the general population for colds, acute infections, and headaches. Chronic diseases such as arthritis, hypertension, and cardiovascular disorders, which are especially common in oldThis issue is examined in detail in ch. 5.
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14 Technology and Aging in America er people, determine the use of another group of drugs that includes diuretics, anti-hypertensives, anti-inflammatory agents, and cardiac drugs. THERAPEUTIC EFFECTIVENESS OF DRUGS IN THE ELDERLY When carefully administered, drugs improve the condition of most elderly patients. Drugs are usually the most cost-effective way to treat chronic disease or manage its effects. Such benefits, however, can have unanticipated negative effects on some older people. The elderly have a higher incidence of drug side effects and drug interactions than younger age groups. Many problems of drug use among the elderly are due to altered metabolism, the presence of multiple diseases, and increased susceptibility to side effects. The effects of these factors are exacerbated when older persons take improper combinations of drugs, often unbeknownst to their doctors or pharmacists. Few drugs are tested for side effects and therapeutic effectiveness specifically in the elderly. Recent studies of how drugs are distributed and metabolized in the body show significant differences between older and younger populations. These differences are based on age-related biological changes that affect the bodys ability to process, store, and excrete drugs. It is not yet universally recognized, however, that the elderly require different drug treatment than younger adults. The presence of multiple chronic diseases and their treatment with multiple drugs lead to a higher incidence of adverse drug reactions and adverse drug interactions. The threshold of toxic blood concentration is lower for the elderly for many drugs, leading to increased probability of overdose, This may be due to altered pharmacokinetics 14 in combination with increased susceptibility to adverse drug effects. While adverse drug reactions and interactions account for 3 percent of all hospital admissions, they account for 12 to 17 percent of hospital admissions for those aged 70 to 90. Adverse effects are especially common for drugs used to treat 14 pharmacokinetics defines how drugs are distributed and metabolized in the body. cardiovascular and psychiatric diseases, both of which are prevalent among the elderly. Adverse drug reactions among the elderly are estimated to cost $3 billion per year. Side effects of drugs may be more common among ambulatory patients than among hospital patients. Reporting of adverse effects is less reliable for ambulatory patients, and drug errors are more common outside the hospital. Increased prevalence of home care may exacerbate the problem of adverse drug effects and noncompliance with prescription instructions. EDUCATION IN PROPER USE OF DRUGS Appropriate use of drugs by the elderly can be facilitated in a number of ways, Improved education of health care providers, including physicians, can instill knowledge about proper use of drugs and increase awareness of the special biological and physiological characteristics of older patients, An experimental method now under way uses trained personnel to visit physicians to educate them about common prescription errors. There is wide agreement on the need to improve physicians awareness of drug therapy problems among older patients. A large study found that efforts to change physician habits reduced Medicaid costs significantly. The cost of educational materials and personnel for educating physicians was $93 per physician per year, which resulted in estimated annual savings of $205 per physician in Medicaid reimbursements. Patient education is essential for the practical management of chronic conditions because the long duration of illness requires active patient participation. Information transfer is more difficult with older patients than the general population, however, especially for two groups-very old persons who are less educated and those who are confused. Heightened sensitivity among health providers to the need for adequate patient education could improve the efficacy of treatment; enhanced awareness among older patients could diminish anxiety and aid in the treatment process. TESTING AND SURVEILLANCE Although drug testing in elderly patients is not specifically mandated for inclusion in clinical trials
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Ch. lExecutive Summary l 1 5 performed for Food and Drug Administration approval, the recent trend has been to include more older patients. But there are no specific guidelines or regulations for assuring that clinical trials take account of the special drug needs of the elderly, in part because such requirements would complicate analytic procedures. Elderly subjects would have to be representative of the older population and its wide variety of chronic conditions. The high prevalence of disease among the elderly increases the noise level in drug reaction data, compounding the difficulty of detecting problems. To compensate for this factor, more elderly patients must be included in tests; this increases development costs and makes analysis more difficult. Increased use of postmarketing surveillance could contribute to establishing drug safety and efficacy; monitoring of actual drug use would help to identify unknown adverse reactions. Premarket test results could be supplemented by these procedures and safety would be encouraged by intensive surveillance. There are, however, problems with using postmarketing surveillance to assure safety; current methods of reporting adverse effects, for example, are unreliable. Because older people often have multiple disorders that can be treated in a multiplicity of ways, and because of the plethora of potentially effective drugs that can be used, optimal treatments are often not apparent. Comparative studies of different treatment combinations for a set of conditions are often not available. The standard method for dealing with such uncertainty is the randomized clinical trial, the development of which was a major advance in modern medicine. Careful studies of different treatments under controlled circumstances could establish the best regimens. Federal savings from support of randomized clinical trials might be obtained through reduced incidence of side effects from current treatment methods and by preventing unnecessary complications. The magnitude of savings, however, cannot be estimated because there is inadequate knowledge about the potential improvement in health that might arise from different treatments. Also, increased support for clinical trials is likely to be quite costly, and could divert Federal funding from basic biomedical and other forms of research. SELECTED ISSUES It is clear that considerable information is needed about issues surrounding drug use by the elderly. The Federal Government is directly or indirectly involved in a number of these issues. Considerations for congressional review include the following: l l l l changes in health services Should Congress require premarket testing and/or postmarked surveillance of drugs specifically in older population subgroups? How might Congress encourage improved education of both health care providers and older persons themselves regarding drug use by the elderly? Should Congress require improved labeling of over-the-counter medications to warn of possible dangers in their use by older persons? Should Congress extend funding for randomized clinical trials for drug treatments for diseases that are prevalent in the elderly? Information technology and and home health care are developed. Although health care of the elderly* information technology, particularly in computers and communications, 15 has had substantial impact Ability of the elderly to use information techon the health care system, relatively little attennology and to participate more directly in their health care is of growing interest as new ap15F~r purposes of this report, information technolo~v is defined preaches to health promotion, disease prevention, as the application of computers and telecommunications systems to the creation, storage, manipulation, and dissemination of infor*This issue is examined in detail in ch. 6. mation,
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76 Technology and Aging in America tion has been devoted to applying this technology to the specific health needs of the older population, who stand to benefit significantly from its applications. This report thus focuses on the potential use of health information technology for both current and future cohorts of older persons. The elderly of the year 2000 will have considerably higher educational levels, and be more likely to be familiar with and to use information technology than those presently over 65. The difference in attitudes toward such technology will be even more dramatic when the baby boom cohorts, now aged 25 to 40, become eligible for Medicare early in the 21st century. Although there is a dearth of computer applications of information technology for elderly persons in general, various computer-based technologies have been developed to assist the severely disabled and those suffering from chronic medical problems. Such prosthetic technologies include programmable wheelchairs, voice-activated robots that can literally serve paralyzed persons, and a variety of rehabilitation aids. Many of these technologies, however, are as yet either experimental, relatively expensive, or primarily applicable in health care settings. New computer applications are expected to have widespread use in assisting those who are less impaired, including most older persons. The decade of the 1980s promises significant advances in the availability and use of personal computers for a multitude of functions that will aid all age groups in the population. Some of these new technologies will be especially beneficial to older persons who have decreased functional abilities and restricted mobility. Today, about half a million older persons are confined to bed; about 2 million have mobility problems around the home; and almost 3 million require the assistance of another person to perform activities of daily living. Information technology can enrich and improve the services that traditional health care institutions and professionals provide by disseminating information directly to older persons in their homes. This information could include methods for maintaining and improving health or ways to access needed services, and could be readily provided on video displays or in print, both to those at home and to wider audiences at senior centers, community centers, and congregate housing complexes. USE OF INFORMATION TECHNOLOGY BY THE ELDERLY There has been little study of the ability of older persons to use computers, and still less of their ability to use computers for health care. The little empirical evidence available indicates that contrary to stereotypical views of the elderly most older individuals are quite receptive to computer technologies. Demonstration projects have shown that older persons, after preliminary instruction, have a high degree of interest in using personal computers. Some older people enjoy programming and working with applications software, such as spreadsheets; others prefer recreational computer games and communicating by means of computers adapted to their capabilities. Because the older population is heterogeneous, particularly in terms of functional ability, some older persons require specially adapted computers. Although they vary widely in cost at this stage of development and marketing, computer consoles with larger keyboards and video display screens with larger displays are available to compensate for the sensory and functional impairments of some older persons. Information technology can be used by the elderly for health purposes in two major ways. One is computer-assisted health instruction, which is a logical extension of self-care/self-help. It is estimated that at least 25 self-help programs for the elderly are now in operation, most of them developed by nonprofit organizations, but very few of these use computer programs. Most computer-assisted health instruction programs are used in health care settings to instruct patients, such as diabetic and post-stroke patients, who have specific problems. The steady growth of software for educating the general public about health maintenance and disease management outside of traditional care settings, and the trend toward specialized programs for subgroups of the population, signal the eventual evolution of homebased computer programs for the elderly. The relevance of this technological trend for use by and for the elderly is not yet widely recognized by either the private or public sector, but the mar-
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Ch. lExecutive Summary l 1 7 ket is expected to change rapidly during the next 5 years. Self-help for health maintenance and disease management can also be indirectly assisted by existing computer technologies. Homes can be computer-monitored to assure proper heating, to control a variety of appliances, to provide wake-up services, and give audible reminders at medication times. Computers can be programmed to instruct older persons or their family caregivers on special diets, rehabilitation practices, and other medically related practices that promote their health. The safety of dependent older persons can be enhanced by alarm systems that notify central monitoring stations of trouble in the home. The alarm can be activated at any time by the individual or by an automatic signal if the monitoring unit is not reset within a predetermined amount of time. These and other technologies increase the ability of dependent older persons to remain in their homes and to be less dependent on personal care assistance. A second important way in which the elderly can use information technology is by assisting health professionals to monitor the care of older persons. The use of home computers to augment professional care may enable chronically ill people to remain in their homes and reduce the need to make difficult visits tomedical offices or to have care providers visit them at home. Blood pressure, pulse rates, body temperature, and heart electrical activity can now be sensed and measured by smart sensors that incorporate microprocessors. This type of personal home health monitoring system can provide daily appraisals of the patients vital signs and store the data in a longitudinal record that can be used to monitor changes in those measurements. It can also include a voice chip for giving simple instructions and programmed advice for certain types of health regimens. Measurements of other physical functions have recently been developed for use in rehabilitating handicapped patients. Some of these measurements have the potential for computer-based processing, and may also be applicable for monitoring the health status of older persons who are acutely ill or severely impaired. An interactive telecommunications system between the patients home and the health care providers office could be established to facilitate medical monitoring. ACCESS TO HOME COMPUTERS There are no data on the age of individuals who own or have access to personal computers in the home, and estimates of future penetration of the market vary widely. Estimates of the proportion of U.S. homes that will have computers by 1990 range from one-fourth to two-thirds. It is only certain that the market will greatly expand, especially as unit prices decline and program capabilities increase. The extent to which this growth will reach the older market is unclear. There are a number of barriers to the use of information technology for health purposes by the elderly. One problem is the cost of the technology, which currently ranges from several hundred to several thousand dollars for a basic home computer system. Additional costs for software increase the economic burden. Another factor is the incompatibility of equipment among a great variety of systems, making the decision to purchase a particular unit more difficult. The elderly with functional impairments have unique access problems in that they often find it difficult to use computers designed for the general public, and the costs of custom-designed units remain high. Self-health information and computer instruction technologies are themselves emerging fields, and as such are diverse and unsettled. In some cases, programs are developed by transient entrepreneurs who lack subject knowledge and are often forced out of the market. Other programs have excellent material that is developed by individuals who have expertise in subject content and computer technology. Most available software programs have not been evaluated. The serious issue of establishing criteria for evaluating computer-assisted instructional material is just beginning to be addressed. SELECTED ISSUES Because the application of information technologies to self-health care for the elderly is new, there has been little direct Federal involvement in the past. Some Federal demonstration program
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18 Technology and Aging in America funds have been used to develop information system models for nursing homes. A more concerted Federal effort has supported research and development of information dissemination technologies for the handicapped, some of which are useful for older persons who are functionally impaired. Some executive agencies are now supporting demonstrations of home-based information technologies for health promotion; other agencies are considering funding investigations of the use of microcomputers and computer games to improve the social interaction and mental functioning of the elderly. Additional research is needed on the role of information technologies in health maintenance and disease prevention for the elderly. This research should include evaluations of the quality of health instruction programs designed for older persons, problems in accessibility and use of computers by the elderly, and the cost-effectiveness and efficacy of information technologies for reducing the amount of personal home care required. The major issues for congressional oversight in this area are: l l To what extent, if any, should the Federal Government be involved in activities concerning the safety, cost, liability, and efficacy of computer-assisted health instruction programs for the elderly? Given existing authority, how can the Federal Government encourage the private sector to voluntarily develop appropriate health instruction technologies for the elderly that meet basic standards for quality? Functional impairment and long-term care Most older persons are able to carry on their regular daily activities in a variety of environments, but the incidence of chronic conditions and prevalence of functional impairments increase notably at the oldest ages. These problems are the major reasons for the long-term care needs of both the elderly who are institutionalized and those who live in the community. As the number of Americans over 65 rises, the correspond*These issues are examined in detail in ch. 7. ing rise in the number of very old those over 85will dramatically increase the need for longterm care services, This need will be exacerbated by the new prospective payment system under Medicare, which is expected to limit hospital length-of-stay and encourage early release of older patients, many of whom will still require rehabilitative or other types of long-term care at home. Long-term care services are provided by nursing homes, board and care facilities, and home health care agencies. In some communities additional services are provided in adult day care facilities, hospice programs, and congregate housing facilities. Little information is available about differences in the services that agencies provide or the types of older persons served, in part because of differences among State programs that support community-based long-term care services. It is known, however, that a wide range of services is provided to a great variety of older clients, and that there is both lack of coordination and duplication of services in many communities. EXTENT OF NEED FOR LONGTERM CARE In general, community-dwelling persons over 85 are six times more likely than those aged 65 to 74 to be dependent in basic or instrumental activities of daily living 16 and to need the assistance of another person. As the proportion of very old persons in the older population increases, the demand for long-term care services will grow. Greater strains will be placed on families and other informal caregivers, who currently provide up to 80 percent of long-term care for the elderly. This level of informal support is expected to change for a number of reasons: The older the person, the less likely he/she is to have a spouse to provide assistance; this is especially true for women over 85. The higher the number and severity of functional impairments, the lower the likelihood 16 Basic activities of daily living include dressing, eating, bathing~ toileting, walking, and getting in or out of bed. Instrumental activities, also called home management activities, generally refer to tasks such as shopping, cooking, doing house and yard chores, handling money, and driving.
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Ch. IExecutive Summary 19 that family and friends can provide the degree of assistance required. l Because most family caregivers are women, the increasing proportion of adult women in the labor force will reduce the number available to provide informal support to an elderly parent. Greater demands will be placed on existing longterm care agencies to respond to the changing characteristics of the older population and its informal support network. Yet the complexity, fragmentation, and limited scope of long-term care services in most communities make it difficult for individuals and their families to understand what formal services and alternatives are available. The problem can be particularly troublesome for dependent older persons who are alone. One of the greatest fears of the elderly is that they may become frail and dependent on others, even though assistance might be readily available. This concern can be ameliorated by a logical and wellcoordinated national system of long-term care services that includes expanded use of technologies in the health care setting, the home, and the community. TECHNOLOGY AND LONGTERM CARE Technology has not been widely used in longterm care services for the elderly. Identification of appropriate technologies for this population requires accurate assessment of their needs. Such assessment is hindered by the fact that Federal and State programs, which regulate and fund more than half of all long-term care services in the United States, influence the kind of needs that are recognized. By emphasizing medical and skilled nursing care, these programs tend to obscure the need for other types of supportive services. Although existing medical technologies can treat some of the chronic conditions that cause functional impairment, most chronic conditions are not curable. Given the lack of effective cures or prevention, effective management of chronic conditions becomes important. This can often be achieved with appropriate drug therapy, personal care services, and use of technologies that compensate for decreased function (e.g., prostheses, assistive devices such as walkers, chair lifts, vision and hearing aids). Many of these assistance methods need further development to expand their usefulness. While biomedical research generally focuses on acute conditions that cause death, expanded research on the chronic conditions that cause functional impairment could result in effective treatments or prevention strategies, as well as prosthetic or management technologies that promote independence and decrease the need for long-term care. Alternative approaches to maintaining independence or compensating for functional impairments are needed, such as assessment technologies, assistive devices, and rehabilitation techniques. Assessment technologies can play a significant role by focusing on the various chronic conditions that lead to functional impairments and the types of resources available to assist the individual. But the prevailing emphasis on medical and skilled nursing care has limited the use of assessment technologies, both in long-term care institutions and in the community. At the same time, the new Medicare prospective payment system for hospital care, based on Diagnosis Related Groups (DRGs), will encourage the earliest possible release of older patients, which increases the importance of adequate discharge planning and use of appropriate assessment technologies. Yet physicians and other health care providers generally lack training in the use of such measures, and there is disagreement about the reliability and validity of existing assessment technologies. Assistive devices are available to compensate for some impairments in hearing, vision, walking, and other functions. Various other devices can assist the moderately impaired in preparing food, eating, performing household chores, and managing other activities of daily living. These devices range from simple and inexpensive to complex and quite expensive. In most cases their costs are not reimbursable under Medicare or Medicaid provisions; this factor can limit their use by older persons, Other factors restricting their use include lack of information about available devices, the difficulty of selecting appropriate devices for individuals with multiple impairments, and negative attitudes of elderly individuals, their families, and many health care professionals about the usefulness of the products.
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20 l Technology and Aging in America Photo credit: M. Holtby, Seniors Resource Center, Jefferson County, CO Assistive devices helped the impaired elderly to remain active. Another growing need is the availability of rehabilitation devices and techniques for posthospitalization care in the home. The implementation of DRGs under Medicare is likely to increase the need for medical technologies that can be used for outpatient and in-home rehabilitation. The need for new devices to assist in the rehabilitation of older persons will grow, but their cost and complexity may limit their availability. As with assistive devices, negative attitudes toward the rehabilitation potential of older persons may restrict the use of those devices that are available. PREVALENCE OF MENTAL AND PHYSICAL IMPAIRMENT Some elderly individuals have mental condi= tions that can cause functional impairment or increase their degree of physical dependency. The degree of physical and mental impairment is related to need for long-term care and the risk of institutionalization. About half of all residents of nursing homes and board and care facilities have some degree of mental confusion. But the proportions of these individuals who are functionally impaired because of mental confusion and the proportions who are impaired by both physical and mental conditions are not known. Nursing home residents are more likely to have severe mental confusion and to be highly dependent in the basic activities of bathing, eating, and toileting. Some data on nursing home residents show a high statistical association between mental confusion and degree of physical impairment, particularly in the areas of severe incontinence and inability to bathe or feed oneself. Persons with both mental and physical impairments usually require 24-hour care, which is a great burden for most caregivers. There appears to be a critical threshold of physical and mental impairment, beyond which family caregivers can no longer effectively care for the dependent person and are usually forced to rely on institutional care. Despite the great difficulties that families and health care providers must face in caring for these highly impaired individuals, little public or private sector attention has been given to the development of devices and care techniques that might help resolve the more severe problems. Although most patients who are severely impaired mentally and physically may require skilled nursing care, some need only 24-hour supervision and personal care services. Yet existing health care reimbursement programs encourage admittance of these persons to nursing homes rather than to less restrictive and usually less costly board and care facilities. Similarly, individuals who need personal care and supportive services at home may not receive the care they need or may receive unnecessary health care services because of Medicare and Medicaid funding regulations. Negative attitudes about the concept of custodial care, and fears about the cost of providing nonmedical long-term care services for the functionally impaired elderly, also limit the availability of these services. USE OF AVAILABLE TECHNOLOGIES Most long-term care services are labor-intensive, and formal and informal providers receive little training in the use of devices and techniques to facilitate caregiving. Increased development and use of these technologies could lessen the burden of caregiving, allow elderly persons to remain at home longer, and decrease staff turnover in long-term care facilities. Technologies to assist patients and caregivers are used more extensively in Europe than in the United States. Western European countries generally provide a greater range of supportive environments and residential facilities to assist impaired individuals and their caregivers. Few medical care technologies have been used in long-term care facilities or in the home. The
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Ch. lExecutive Summary 21 recent implementation of the Medicare prospective payment system and increased emphasis on the provision of health care services at home should broaden the demand for home-based medical care technologies. This trend is expected to grow, as is demand for sophisticated medical and nursing care technologies in nursing homes. Increased use of these technologies outside the hospital will depend to a large extent on public and private reimbursement policies for costs of nursing home and home care services, and on the availability of skilled health care personnel trained to use these technologies and to teach the patient and the family to use them. These changes will require better methods of patient assessment and increased coordination of the caregiving network to promote a continuum of care based on categories of need among different groups of patients. Efforts to improve service delivery have included techniques for coordinating services at the community level, case management systems, and organizational approaches that provide a range of services through a single local agency. Development of a more coordinated system of services could enhance the ability of some elderly individuals to remain at home and to plan effectively for their own longterm care. SELECTED ISSUES Because the demand for long-term care services is expected to continue its rapid growth, additional information will be required to develop and evaluate alternative approaches to caregiving for functionally impaired older persons. A fundamental need is expanded basic research on the chronic physical and mental conditions that cause impairment. Given the prevalence of existing conditions, additional research is needed for development, utilization, and evaluation of technologies to meet the needs of the long-term care population. Devices and techniques to assist older persons with multiple impairments and mental confusion need to be developed. Accordingly, more information is needed on the relationship between mental confusion and functional impairment, and on the impact their severity has on the demand for different types of long-term care. Improved methods are needed to reliably assess the extent of chronic conditions and impairments as well as the devices or techniques that can best ameliorate them. Most of these research areas are related to other issues for congressional review regarding the growing need for long-term care. These include: l l l Should Congress promote the expanded development and use of comprehensive assessment technologies for the community-dwelling and the institutionalized elderly? Should Congress mandate additional funding for long-term care serices-based on degree of functional impairment-delivered in the home and in care settings other than nursing homes? Should Congress implement policies to increase the use of assistive devices and rehabilitation technologies in the home and in other long-term care settings? Health care costs Health care spending has been rising and will continue to do so under present policies, but the growth in numbers of those over 65particularly those over 75will intensify demand for acute and long-term care services. Recent data indicate that about one-third of all health care expenditures are by the elderly, and that up to 30 percent of all Medicare payments are made for care of persons in the last year of life. But the growth of the elderly population is not the main reason for the rapid escalation in health care costs, which have been increasing at almost three times the general rate of inflation during the past 5 years. Health care expenditures in 1982 totaled more than $322 billion, an increase of almost 30 percent since 1980. In 1983 total health expenditures rose an additional 10 percent and reached $335 billion-comprising more than 11 percent of the gross national product. The dramatic increases are largely due to intensification of services, expanded availability and use of costly diagnostic and treatment services and technologies, and the rising cost of labor. This excessive inflation in health care costs has led to concerted efforts to *This issue is examined in detail in ch. 8.
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22 Technology and Aging in America contain spending, which have far-reaching implications for older Americans. DEMAND FOR HEALTH CARE Demand for health care by older persons is influenced by physical, psychosocial, and economic factors. The increased use of services by some older persons is usually due to their increased burden of illness. The remarkable recent decreases in mortality among those over 65 have not been accompanied by similar decreases in morbidity. Moreover, older persons tend to underreport symptoms of chronic conditions. Some studies have shown an average of three correctable problems per elderly patient; many of these problems could have been identified earlier by using functional assessment measures or by using greater care in taking the patients history. While most older persons are functionally independent, many require health care for chronic conditions that increase in prevalence with age. Spending for health services represents a major problem for both elderly individuals and the Federal Government. Medicare provides an important health care subsidy for those over 65, but it is by no means comprehensivemany necessary services and technologies that affect health and functional status, such as dental services, eyeglasses, and hearing aids are not reimbursable. The growing need for long-term care as age rises means that increasing proportions of the elderly population whose financial resources become depleted have to rely on public means-tested programs such as Medicaid and Supplemental Security Income for the cost of long-term care services, Private financing mechanisms such as medigap 17 or other types of private insurance do not provide adequate supplemental protection. The few private insurance policies that are available for long-term care, especially for nursing homes or skilled care at home, are extremely selective for participation and very expensive. Yet one-fourth of all health expenditures by the elderly are for nursing home care, of which pub17 Wiedigap insurance has been developed by the private sector to help patients cover the cost of medical expenses not reimbursable by Medicare. lic programs (primarily Medicaid) pay about onehalf. The increases in these costs show no sign of abating, as more expensive technologies become available and the need for care grows within the aging population. COST-CONTAINMENT EFFORTS Cost-containment efforts to date have not been effective in controlling overall health spending, whether by individuals, the Federal Government, or third-party payers. Most approaches have focused on hospital care and rate-setting, as in the new Medicare prospective payment system. The response of the health industry has been increased shifting of services to ambulatory settings (e.g., outpatient and rehabilitative care) or shifting costs to other Federal programs, other insurers, and consumers. Attempts to shift a greater share of costs to consumers in order to minimize overutilization of health services have tended to reduce the number of persons seeking care, but have not changed use-patterns after a diagnosis has been made. Cavitation approaches have been most successful in encouraging the substitution of lower cost services for expensive hospital care. Recent experiments are extending the cavitation concept to include supportive social services. The coordination of services and benefits among Medicare, Medicaid, and other public programs that influence health care remains a problem in access to care for the elderly. Poor coordination can increase costs because the most appropriate services are not provided; better coordination may increase utilization and overall costs, but can also improve the quality of care and reduce the need for acute care. The incremental costs and benefits of each action must be evaluated. As has been noted, attempts to control Medicare costs through prospective payments could affect quality of care for patients in hospitals awaiting placement in long-term care institutions. Premature discharge may result in multiple admissions and shifting costs to home care, increasing overall costs for these patients as they are cycled back and forth between inadequate community settings and the hospital.
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Ch. lExecutive Summary l 2 3 Other reports have addressed cost-reduction questions related to changes in eligibility, benefits, and financing mechanisms for the existing Medicare program. Recent Congressional Budget Office reports explore options to increase revenues or decrease outlays as well as potential schemes to tie deductibles to income level. This assessment concentrates on the cost-containment issues in Medicare and Medicaid as they relate to the aging of the population, the demand for health services and long-term care, and changes in technology. SELECTED ISSUES The volatility of health care costs in recent years has spurred considerable research and evaluation at all levels of government and in the private sector, but significant gaps in knowledge remain regarding such questions as how to maintain quality and access to care while promoting cost-effectiveness and cost reductions. More information is needed on the range of factors that affect the use of health and long-term care services by the elderly. Research is needed on how to improve measures of health outcome, better strategies for educating consumers, and alternative methods for financing health care and long-term care. Specific issues regarding health care cost-containment strategies and their effects that are likely to face Congress include: l l l l Should Congress strengthen the quality assurance mechanisms for health care services because of possible adverse effects of cost containment? How might Congress stimulate coordination among preventive social, long-term care, and acute care services to promote efficiency and reduce costs for unnecessary types of care? What types of function-enhancing technologies can be encouraged to reduce the need for health care services? Should Congress act to increase coordination among Federal and State programs to avoid unintended interprogram cost-shifting? Social changes in the living environment Housing and the living environment The housing environment takes on greater significance as people age-especially in terms of lifestyle continuity, neighborhood familiarity, physical security and safety, and emotional sustenance. Although the older population has the highest percentage of home ownership, physical housing deficiencies and excess cost burden also tend to be higher among many subgroups of the elderly. Resolving these problems may require new and specific types of Federal assistance. Of particular concern is the growing number of very old persons who live alone, especially those who have functional impairments. For these individuals, informal supports from family and friends often mean the difference between institutionalization and continued residence in their homes. New technologies and services, when combined, could provide increased assistance for maintaining independence in the household, especially as the availability of informal support shrinks. ELDERLY HOUSEHOLDS AND HOUSING TENURE During the last two decades, the number of elderly households has risen proportionately more rapidly than the number of elderly persons. Changes in living arrangements, especially the growth in numbers of older persons living alone, have contributed to this trend. The proportion of U.S. households headed by an older person has increased from 15 percent in 1950 to more than one-fifth today. Marital status and living arrangements have also changed since 1960, due in large part to sex differences in life expectancy. More than four times as many older women as men live alone; more than three-fourths of older men but l These issues are examined in detail in ch. 9.
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24 Technology and Aging in America less than two-fifths of older women are married and living with their spouse. Most recently, the proportions of older men and women who live with nonrelatives have decreased. This trend is particularly evident among women over 85, who are also far more likely to live alone or to be institutionalized. Approximately three-fourths of all elderly households are owner-occupied, of which fourfifths are owned mortgagefree. The growth of housing ownership by the elderly has continued unabated since World War II. Since 1980, despite an increase of more than 1 million elderly households, there has been a net decrease in the number of renter-occupied elderly households. Although Federal housing programs and subsidies for the elderly have been directed at rental units for low-income persons, there is growing awareness of the particular problems ofand possible opportunities for-elderly homeowners. HOUSING PROBLEMS AND FEDERAL PROGRAMS Housing tenure of the elderly tends to correlate with various social and demographic characteristics related to need for assistance. Rented units are far more likely than owned units to be occupied by one person. Because single-person units among the elderly are highly likely to be occupied by women, they are also twice as likely to have households with incomes below the Federal poverty level. Renter-occupied units are also more than twice as likely to have physical and maintenance deficiencies Elderly owner-ccupied households, which also have these types of deficiencies, may also face the problem of excess housing cost burden, especially for those elderly persons on fixed incomes who still have a mortgage indebtedness. Federal housing policies to assist the elderly have concentrated on the problems of low-income renters through major programs such as Section 8 rental subsidies, low-rent public housing, and Section 202 rental housing for the elderly. But these housing programs for the elderly have been narrowly directed toward building construction and provision of rental units, with little attention to special design features that respond to the physical and psychosocial needs of older persons. In the past, the design of some federally subsidized high-rise housing projects for the elderly increased the likelihood that the residents would become isolated, injure themselves, or be victims of crime. Also, only limited Federal efforts have been directed at preserving the housing stock or promoting rehabilitation of elderly dwelling units either rented or owned. Until recently, no attention was given to the coordination of housing programs with services needed by elderly residents. The need for services is growing as the older population ages and as the first cohorts of elderly tenants in public housing and Section 202 projects age in place. A similar process is occurring in suburban neighborhoods, where the number of elderly residents is growing rapidly. These new cohorts of old and very old homeowners and renters have greater needs for assistance in transportation, household chores, dwelling maintenance, and access to community-based services. The preponderance of older persons living alone and the lack of available support from family and friends-especially for those over 75+xacerbate these problems and increase the degree of assistance needed. HOUSING OPTIONS FOR THE ELDERLY Federal housing programs need to recognize the heterogeneity of the older population and to induce development of a range of housing options that provide varying levels of support. Existing rental unit subsidy programs could be better integrated with congregate services and community programs for the elderly. They could also encourage housing alternatives such as shared housing. Shared housing programs provide income to older homeowners while supplying rental space at affordable prices, Other advantages of such programs are efficient utilization of excess housing space, reduction of social and physical isolation, and provision of informal supports for older persons. Intergenerational shared housing promotes interaction and assistance between generations. Other housing options include accessory apartments or echo (elder cottage housing opportunity) housing. Accessory apartments are usually created within single-family residences. The house is converted to accommodate a separate apartment with little or no change in the homes
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Ch. IExecutive Summary 25 outside appearance. Preservation of neighborhood character is an important element in the acceptability of accessory apartments in most communities. Modular bathroom and kitchen units have made such conversions more efficient and less costly. Echo housing units, also called (granny flats,) are compact, efficiently designed, temporary structures that are erected in backyards of family homes and designed for use by elderly relatives. The standard unit is a modular three-room house of about 600 square feet. Despite their efficiency and low cost, these housing options for the elderly face opposition in local communities that seek to preserve singlefamily zoning laws. These neighborhoods are the most likely sites for echo housing and accessory apartments, but are also the most likely to resist changes to the single-family nature of the neighborhood. Yet the Census Bureau estimates that there are more than 2.5 million accessory apartments in the United States. Echo housing, which cannot be concealed within an existing unit, is far less prevalent. In addition to federally subsidized housing for the elderly, other types of congregate housing have been developed by the private sector. Life care, continuing care) and residential care communities are analogous terms for communities in which older persons pay a large entrance fee and a monthly service fee to live in a unit within a complex that typically provides supportive and health care for the remainder of the persons life. There are more than 100,000 elderly residents in 300 such complexes in the United States, some of which have already experienced financial trouble. Financing problems usually arise because of unsold units, lack of initial capital, and underestimates of actuarial cost factors for providing Lifetime care to the residents. Fewer than 15 States have laws governing the operation of life care communities and no Federal protections exist. Some of the newest housing developments provide residential care, but do not offer lifetime care contracts to prospective residents. other supportive environments include board and care homes that range in size and type. Some have only a few residents and others are large residential care facilities. They also differ in the types of residents they accommodate and the types of supportive services they provide, with some caring for mentally impaired and frail individuals, many of them elderly. Most board and care homes are State-licensed and a majority of their residents receive public income maintenance subsidies. More information is needed about the range of facilities that exist and the types of residents they can accommodate. It appears that some persons who are in need of long-term care can be well served in such facilities rather than in more costly nursing homes. IN-HOME TECHNOLOGIES Many possibilities exist for applications of technologies in the home to assist older persons in maintaining independence and adapting the environment to meet their needs. These technologies, in conjunction with appropriate design of the dwelling unit, can enhance the older persons environmental fit and competence, both of which enable him to control his environment. New, relatively inexpensive technologies allow housing to be readily adapted for the impaired or retrofitted with improved safety and communication features. Low technologies include simple ones that promote mobility, such as safety treads on stairs and in bathtubs, handrails and grab bars, and ramps. Many simple technologies can mitigate the common problems of reduced vision and decreased grip strength in the elderly including door handles in place of door knobs, special controls for major appliances, jar openers, adaptive utensils, and other household gadgets. Various dressing, bathing, and grooming aids are available to compensate for the impaired persons decreased tactile ability and lessened agility, particularly from arthritis. Zipper pulls, velcro fasteners, and hand-held shower sprayers are a few examples. High technologies are more complex and have widespread applications in the home. Especially helpful are communications technologies, such as automatic alarm and telephone dialing systems for emergency help (including electronic monitors that detect falls or injuries), portable telephones, and other security devices. Electronic safety systems are available to program appliances to shut
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26 Technology and Aging in America Photo credt: Roger Austin, Peterborough Development Corp. Supportive housing environments can promote the independence of elderly residents. off after predetermined lengths of time or to monitor and control heat, air-conditioning, and lighting. In-home computers can provide various selfinstruction programs for medication, nutrition, and other self -care assistance. They can also provide catalogs of products for in-home comparison shopping. Modems for personal computers will enable older persons to communicate for a wide range of purposes, such as banking and billpaying from the home; some health monitoring can be accomplished with interactive computers. Interactive television and videotex telecommunications allow individuals to compare, select, and purchase a wide range of goods and services without leaving the home. OTHER HOUSING OPPORTUNITIES New financing instruments provide other possibilities for enhancing the older persons housing options. New equity-based financing instru= ments can help some elderly homeowners increase their income and remain in their homes. Reverse mortgages typically allow elderly homeowners to convert up to 80 percent of their home equity into monthly income for a specified period of years. The homeowner retains ownership, but reduces his equity in the home over time. As currently offered, most reverse mortgages require repayment of the full loan amount (the total of disbursed monthly payments plus accumulated interest) at the end of the loan period (usually 5 to 12 years), New instruments may soon be marketed that will not include the payback requirement at the end of the loan period, but still allow the older person to remain in the house. A second type of home equity conversion is the sale-leaseback plan, in which the older homeowner sells his house to an investor in return for the right to lease back the house for the rest of his life. The typical sale-leaseback plan includes a downpayment to the elderly seller, who carries an interest-bearing note for the balance of the purchase price, paid in monthly installments over a period of years related to the sellers life expect-
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Ch. lExecutive Summary 27 ancy. Advantages to the seller are the right to remain in ones home for the rest of ones life, to pay a fair rental, to receive full price for sale of the house, and to earn interest on the note. The buyers advantages include depreciation of the rental property, income tax deductions, and any appreciation in the houses value over time. Either of these procedures for home equity conversion requires consumer protections and counseling for the parties involved. SELECTED ISSUES The range of housing problems and options for the elderly is expected to grow because of the increasing number of homeowners and the heterogeneity of the older population. Research into these options should include more extensive analyses of shared housing, accessory and echo housing, board and care homes, and life care communities. Too little is known about each of these options, the types of consumer safeguards that may be required, and the potential role of the Federal Government in promoting their availability for the elderly. Home equity conversion plans require greater review and the opportunity to develop new instruments in response to consumer demand and requirements for consumer protection. The range of in-house technologies should be evaluated by appropriate Federal agencies for safety and efficacy. This research can be supported by direct Federal involvement or by incentives to the private sector, especially the housing and finance industries. The growing involvement of the private sector in development of retirement and life care communities, in manufacture of modular housing, and in the production and marketing of hundreds of in-home devices attests to this potential. The following questions suggest areas for possible congressional consideration: Should the Federal Government expand existingpqgrams that assist low-income elderly homeowners who have housing deficiencies and excessive cost burdens? How might Congress encourage utilization of technologies that promote the independence of older persons who are either slightly impaired or restricted in managing major activities in the home? Should Congress provide support for public and private sector efforts to develop new housing construction and desi~ technologies that assist older persons in the home? Should Congress promote the expansion of public and private housing alternatives for older Americans? Work-related changes workplace technology and the employment of older adults* The structure of the American economy has undergone major changes since the mid-1800s, when it was agriculturally based and farm workers constituted two-thirds of the labor force. The United States had become an industrial nation by the 1920s, when more than two-fifths of all jobs were in manufacturing industries and only about I in 10 workers remained in farming. During the 20th century the mechanization of farming and the automation of manufacturing have ushered l These issues are examined in detail in ch. 10. in a new economic era increasingly characterized by service sector occupations. only 3 percent of todays labor force is employed in on-farm agriculture, while 23 percent are in manufacturing, and more than 60 percent are in the service and trade sectors. These changes are expected to continue as the economy becomes increasingly dominated by the electronics revolution and the service sector jobs it creates. TRENDS IN LABOR FORCE PARTICIPATION OF THE ELDERLY These trends have been accompanied by the aging of the U.S. population and a marked decline in the labor force participation rate of persons 38-800 0 85 2
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28 Technology and Aging in America over ss. Workers now 4 S and over may be particularly vulnerable to the latest changes in the work force. Older workers are primarily located in industries and occupations that were growing when they entered the labor market; many older workers are employed in manufacturing, which expanded in growth through the 1940s. Manufacturing and related industries-and their share of the labor forcebegan to decline in importance during the 1950 S ) by which time the earlier young cohorts of workers in these industries were (aging in place. The explosion of workplace technologies during the last two decades has threatened the previously secure future of these older workers. Although there is no direct evidence that significant numbers of older workers have been displaced by workplace technologies (e.g., union seniority rules in many manufacturing trades tend to protect older workers from unemployment), there is concern that future cohorts of older workers those who are now aged 35 to 45will face such possibilities. Recent advances in medical technologies, computers, and robotics 18 have led to the development of new occupations in a variety of high-technology medical care services and in computer programming, operation, and repairjobs from which workers over 45 are likely to be excluded due to lack of appropriate skills. To remain employed, some older workers may need to accept low-skilled, low-paying jobs, or receive extensive on-the-job training. The likelihood that unemployed older workers will find employment at their previous pay level is expected to be significantly diminished. EFFECTS OF TECHNOLOGY IN THE WORKPLACE It is becoming increasingly likely that the pace of technological change in the workplace will present problems for older workers of the 1990s and the turn of the 21st century unless they are trained for positions in the growth sectors of the labor force. Although projections vary, one set indicates that by the year 2000 employment in service occupations will comprise about 85 per18There are an estimated 7,000 industrial robots now In use in the United States. Some 200,000 are projected to be in place in all types of industries and work settings by 1990; this figure may reach 1 million by 2000. cent of all jobs. Jobs in manufacturing will have declined to about 11 percent of the total. Meanwhile, as technologies evolve, many jobs in declining industries are either being replaced by automation or disappearing. Jobs in the manufacturing, farming, and private household service sectors, which have high proportions of older workers, are declining most rapidly. Technology may adversely affect older workers potential to keep these jobs, but it is also likely to improve working conditions, promote safety, and expand opportunities for other workers over 45. Technology is creating new jobs in many industries that currently have high proportions of older workers who can be retrained for these positions (e.g., steel factory floor foremen have been trained to operate computerized control centers instead of supervising from the floor). New service industry jobs and more clerical jobs may offer security to some older workers whose skills will remain in demand. And the possibility of doing todays jobs in tomorrows (electronic cottage) (the computer-based office at home) may provide opportunities for older workers who want to work on a part-time or flex-time basis and/or obviate daily travel to work (clerk typists and stockbrokers, for example). Nevertheless, older workers will need to compete with younger workers who may seek similar flexibility in their job structures. The continuing influx of women into the labor force will intensify this competition. Technology can benefit older workers who have physical impairments. Assistive devices, computers, robots, and other workplace technologies can compensate for waning physical strength, dexterity, eyesight, or hearing and can help improve employment prospects for those not ready for retirement. Workers of all ages can be protected by technologies that replace physically hazardous jobs or those involving dangerous chemicals and materials. There is evidence of long-term health hazards from certain dangerous jobshazards that are usually manifested in chronic conditions later in life. These health conditions are cited as reasons for early retirement by a significant number of older retirees. Replacing these jobs and providing opportunities for other work are likely to help older workers who choose to remain in the labor force.
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Ch. IExecutive Summary l 2 9 RETRAINING OF OLDER WORKERS Retraining of adult workers will grow in importance as changes occur in the nature of jobs and the composition of the labor force. Few training or retraining opportunities are currently available to older workers, especially those with little education and in low-skilled occupations. This situation is likely to change as the population ages and fewer young workers are available for the work force. Indeed, the demographic trend toward greater proportions of older workers may coincide nicely with the projected creation of new jobs in geriatric occupations, such as geriatric service counselors and health rehabilitation technicians. Other projections indicate that the aging of the population, combined with the higher educational levels of future older populations, will increase retraining opportunities and the prevalence of second and third careers in a persons lifetime. Retraining could then be far more common and a repeated element in the lives of most workers, regardless of age. other types of technological changes will influence the number of persons who choose to retire into a healthy and economically secure future. Current changes in the workplace, in pension planning opportunities, in health promotion, in the home, and in the management of chronic conditions later in life may support a continued trend toward early retirement. In 1983, 17 percent of men over 65 were still in the labor force, compared with almost 50 percent in 1950; for women in that age group, the change was from 10 percent in 1950 to 8 percent in 1983 (less dramatic reductions occurred for men over 55, but an increase from 27 to 42 percent occurred for women aged 55 to 64 during the same period). If these retirement trends continue and life expectancy improvements accelerate as in the recent past, the falling ratio of workers to retirees will place evergreater pressures on the Social Security system. In sum, technology can both hinder and enhance the ability of the older worker to continue working. Although present circumstances do not warrant immediate large-scale concern, the future growth of technology and its effects on workers will need scrutiny by policymakers to improve the quality of worklife and provide job security for aduh workers who wish to remain in the labor force as long as possible. Adequate income maintenance must also be targeted for congressional oversight, on the assumption that retirement patterns, whether voluntary or involuntary, will continue at their current level. SELECTED ISSUES As is the case with medical advances, accelerating technological change is most evident in the workplace. Although projections abound regarding the changing nature of the occupational structure during the next 15 years, there is very little accurate information available on either current or potential impacts on older workers. Moreover, little information exists on whether older workers are, in fact, displaced by technology or whether certain technologies instead enhance their employment opportunities. More research is needed on the functional capabilities of older workers and the precise reasons for the retirement decision. Informed policy will require specific data on the relationship between older workers attitudes and their actual employment behavior, including the role of factors such as flex-time and part-time work opportunities, possibilities for retraining, amount of retirement income expected, social characteristics, and technological applications in the work environment (i.e., the workplace or the home). The foIIowing questions reflect some of the immediate concerns that arise for congressional review about technological impacts on older workers: l l l Should Congress encourage the use of assistive devices and electronic technologies in the workplace to enable older workers with physical limitations who wish to remain in the work force to do so? Should Congress devote Federal resources and provide incentives to the private sector to retrain older workers for needed skills? How might Congress respond to the desires of some older retired persons for alternative work options such as flex-time, part-time, and electronic cottage employment opportunities?
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. 30 Technology and Aging in America Conclusion This review of the relationship between technology and aging has stressed the importance of functional ability and the vitality of older Americans for maintaining their independence, maximizing their options, and improving their quality of life. The ongoing aging of the U.S. population is likely to increase the demand for long-term care and the need for increased assistance as the growing proportion of those over 75 face a combination of incapacitating and largely unavoidable infirmities. Some existing technologies can mitigate these problems and others may arise to prevent or delay their onset. Technology has also been the major factor in the growth of the older population and its increased longevity. The mortality rates of all elderly subgroups have entered a new era of accelerated improvement, indicating even greater gains in numbers than had been anticipated. Technology can respond to these trends by providing knowledge and ways to apply that knowledge in the workplace, the home, the health care setting, and the community to enhance the wellbeing of the elderly. At the same time, the swift pace of technological change poses new challenges to society in responding to the effects of such change. Among the challenges are: l continual adaptation and retraining for new skills in the workplace; l providing home environments that promote functional independence; l encouraging greater involvement of individuals in their own health maintenance; assuring that those in need of assistance and supportive services are appropriately served; and utilizing the many resources of older Americans. It is clear that a major challenge into the 21st century will be the maintenance of the health and functional ability of the older population, particularly as the proportions in the oldest ages rise to unprecedented levels. In so doing, society will share the countless benefits that a healthy and vital older population can contribute.
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Chapter 2 Introduction: Technological Change and the Older U.S. Population
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Contents Page Introduction . . . . . . . . . . . . . . . . 33 Approaches to Technology . . . . . . . . . . . . 33 Aging and Technology . . . . . . . . . . . . . 33 Organization of the Report . . . . . . . . . . . . 34 Major Areas of Concern . . . . . . . . . . . . . 34 Demographic Background . . . . . . . . . . . . . 35 Definitions . . . . . . . . . . . . . . . . 35 Demographic Projections of the E1derly Population . . . . . . . 38 Demographic Trends. . . . . . . . . . . . . . . 40 The Growth of the Older Population . . . . . . . . . . 40 Changes in Average Life Expectancy ...., . . . . . . . . . 41 The Aging of the older Population . . . . . . . . . . 41 Trends in Life Expectancy by Sex and Race . . . . . . . . 43 Major Causes of Death in Old Age . . . . . . . . . . 47 Future LifeSpan and Prevalence of Chronic Diseases . . . . . . 48 Implications of Chronic Disease and Disability . . . . . . . . 51 Severity of Chronic Conditions and Patterns of Institutionalization . . . . 52 Chronic Conditions Among the Community-Dwelling Elderly . . . . . 54 Socioeconomic Characteristics and Sources of Assistance . . . . . . 55 Chapter preferences . . . . . . . . . . . . . . 56 Tables Table No. Page l. Growth of the Population Aged 55 and Over, by Selected Age Groups, 1900-2050. 39 2.Life Expectancy at Birth and at Age 65, by Race and Sex, United States, Selected Years, 1900-82 . . . . . . . . . . . . 42 3. Relative Distribution of the Population Aged 65 and Over, by Selected Age Groups, Selected Years, 1960-2020 . . . . . . . . . . . . 42 4. Average Annua] Percent Change in Age-AdjustedDeath Rates forPersonsAged 65 and Over, by Sex and Age, United States, Selected Periods of Years, 1940-80 . . . 44 Figures Figure No. Page 5. Schematic Representation of Cohort Data and Period Data . . . . . 37 6. Age-Adjusted Mortality Rates for the Population Aged 65 and Over, by Sex, United States, 1940-80 . . . . . . . . . . . . . 43 7. Average Life Expectancy at Birth, by Race and Sex, United States, 1900-80. . 44 8. Average Life Expectancy at Age 65) by Race and Sex, United States, 1900-80 . 45 9. PopulationPyramids, by Age and Sex, United States, 1960-2030 . . . . 46 10. Past, Current, and projected Ideal Survival Curves for the Population, United States, Selected Years, 1900-80 . . . . . . . . . . . . 49 11. Projections of the Nursing Home Population Aged 65 and Over, United States, 1980-2050 . . . . . . . . . . . . 53 12. Limitation of Activity Due to Chronic Conditions, by Degree of Limitation and Selected Age Groups, 1981 . . . . . . . . . . . 54
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Chapter 2 Introduction: Technological Change and the Older U.S. Population Introduction Technology, in conjunction with economic, demographic, and social factors, affects the nature, impact, and course of social change. It plays, and will continue to play, a pivotal role in the aging of the U.S. population. The myriad approaches to understanding the interactive nature of technological, demographic, social, economic, and political processes are often onedimensional or narrowly focused, yielding parochial conclusions that take inadequate account of the effects that different variables have on each other. Approaches to technology In this report technology is viewed as complex and varied, not only in how it evolves, but in how it is applied to societal problems and goals. The broad scope of technology is exemplified by descriptions of its different forms, such as (hard or (soft and high or low. It can be a process (soft technology) such as research and the development of new knowledge, or products (hard technology) such as sophisticated new medical instruments and surgical procedures-which are also high technology-or simple in-home assistive devices and gadgets, which are low technology. Technology can, for example, be manifested in the ways in which health services are organized or new implements and devices created and utilized. In this report, the term technology encompasses each of these levels, types, and applications of knowledge to solving problems and accomplishing tasks. The relationship between technological change and the welfare of society involves decisions about Another view is provided by physician and educator Lewis Thomas, who has proposed a three-level paradigm of technology: 1) nontechnology, such as personal supportive care services for dependent persons; 2) halfway technology, such as devices that compensate for disabilities (e.g., hearing aids, pacemakers, wheelchairs]; and 3) decisive technology, such as basic research and science. what in fact constitutes a problem, z Because these decisions include judgments about what is good, the development of knowledge and its technological applications not only arise from cultural values but are themselves social institutions. Modern technology surpasses that of earlier periods in its power, scope, and pace of change. Its societal consequences are thus becoming both more profound and more pervasive, intensifying the importance of understanding and anticipating technological impact and change. Aging and technology The interaction between technology and society presents both opportunities and challenges to individuals and social institutions. Will technological change enhance the ability of older persons to work or to perform daily activities of living, or will it instead limit their capacity to be selfsufficient? The rapid growth in numbers of older Americans is focusing increased attention on the social and economic costs or benefits of technology for the elderly, and for society as a whole. New types of housing units and their design may minimize or exacerbate the difficulties faced by older individuals who are functionally impaired. Improved biomedical technologies to treat acute illnesses will present new questions about the value of life and the choices made about living and dying. Advances in health care that reduce the incidence of chronic disease are likely to require decisions about allocation of resources and whether access to health care services is a right or a privilege. The list of relevant issues is long and complex, but it is clear that none of these changes is independent of the others. 2 In discussing the cultural aspects of technology and its use in solving problems, economist John Galbraith defined technology as the systematic application of scientific or other organized knowledge to practical tasks (8). 33
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34 l Technology and Aging in America During this century, the application of technologies in the workplace, the home, the hospital, and the environment has led to great improvements in life expectancy and health across all age groups, particularly the youngest. Most recently, medical and other technologies have accelerated the improvement of life expectancy among the oldest age groups. Technological developments have also improved contraceptive efficiency, contributing to the notably low birth rates of the 1970s. The annual fertility rate of American women aged 15 to 44 was lower during the last decade than in any previous periods In combination, these changes in fertility and mortality will hasten the aging of the American population during the next few decades During the last 20 years the population aged 66 and over has grown twice as fast as the population under 65. The pace of technological change accelerated dramatically during this period, raising innumerable questions about the interaction of technology with the growing older population, This assessment recognizes that technology involves the development of knowledge and its application to issues of aging in a variety of contexts, such as: 3 Fertility rates measure the frequency of live births within a given population, such as number of live births per 1,000 women aged 15 to 44. These rates do not account for stillbirths and aborted pregnancies, whether induced or spontaneous. 4 The aging of the population means an increasing proportion of the total population in the older (over 65) relative to the younger (under 65) ages. It is also measured by median age, the age at which 50 percent of the population is older and 50 percent is younger. the biology or chemistry laboratory, where new biotechnologies may enhance understanding of cellular aging and disease processes; the health care setting, where new diagnostic and treatment methods may prolong increasing numbers of lives; the workplace, where efficiency and productivity are new challenges for adult workers and for policymakers concerned with their physical, economic, and psychological wellbeing; the home, where functional independence is likely to be enhanced by new devices, information technologies, and differently organized long-term care service delivery systems; and the community, where public services, transportation systems, information technologies, and long-term care programs may enhance functional ability, or promote disease prevention, health promotion, and expanded options in daily living. An examination of each of these broadly defined contexts led to the identification of issues that are of Federal concern in budgetary, regulatory, and oversight activities. Options that correspond to these issues, which will grow in importance as the elderly become a larger proportion of the U.S. population, are presented for congressional review. Organization of the report Major areas of concern It should be noted that this assessment does not focus on acute illness and its treatment in the Four major areas were selected for attention elderly, which would considerably expand its in this assessment. Their importance, both direct scope. Treatment of acute illness has already reand indirect, is evident in existing Federal policy, ceived extensive study, including other OTA programs, regulations, and budgetary activities assessments of medical technologies and acute related to older Americans. These areas are: health cares This assessment concentrates on l l l l chronic conditions and biomedical research; chronic health condition, biological factors and functional impairment and long-term care; housing and the living environment; and The OTA Health Program has published a series of case studies and technical memoranda on specific medical technologies for acute employment and the workplace. illness (22).
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Ch. 2Intrduction: Technological Change and the Older U.S. Population 35 functional impairments of the elderly because of their growing significance to the independence of older persons and their ability to carry on var ious activities in the workplace, the home, and the community. Some of these areas are discussed in this chapter; many more are included in the chapters that follow. The table of contents for this report indicates the breadth of subjects covered in the four general subject areas cited. Each chapter deals with the implications of technology and aging in a particular area. General themes include organization, financing, efficacy, regulation, safety, quality, education, and research. The congressional issues and options that conclude each chapter reflect many of these themes (e.g., the efficacy of medications for the elderly, the organization of long-term care, and the quality of housing and its design for the elderly). Areas for additional research are identified separately. Studies on the socioeconomic, attitudinal, behavioral, and other social scientific characteristics of the older population are not emphasized in the research priority sections unless they have a direct bearing on questions related to technological change. Chapter topics were chosen in response to congressional requests and upon the advice of the projects Advisory Panel. The intent of this assessDemographic background Definitions These definitions are central to discussion of the demographic aging of the American population and the future implications of current trends in U.S. population growth and change. AGING AND THE AGED For purposes of this report, the elderly are defined as all persons aged 65 and over (or (over 65). Although is a chronological definition of the onset of old age, there is no scientific marker of old age. In the United States and most Western industrialized countries, 65 years is the age of eligibility for full retirement income benefits. Some countries vary in this regard. In Japan the ment is not to provide a comprehensive review of all aspects of technology and aging, but rather to examine the most important technological factors related to the physical and mental health statusand independence-of the older population. Appendixes are included to provide detailed data and background information for several important areas, including morbidity and mortality, labor force participation, and biotechnology. The appendixes amplify information that is provided in the chapters. The following section reviews the demographic phenomenon known as the aging of the American population. It discusses the changing characteristics of the older population and major trends in mortality and morbidity. Technological change and its relevance to these trends is assessed in relation to the reports four general subject areas, which give rise to key policy issues. Where appropriate, the experiences of other Western industrialized countries with similar characteristics are cited as instructive models that may suggest possible policy options for the United States. Detailed comparisons of aging and public policy in these nations are, however, not included in this assessment. eligibility age for women is 55 and for men is 60; in Norway neither men nor women become eligible for full benefits until age 67. Age 65 was established as the eligibility age for full Social Security benefits at the US. retirement programs inception in 1935. 6 It is important to note, however, that aging is a gradual biological process that differs among individuals; people do not suddenly become old at 65, Indeed, the older population tends to be 6 Age 65 has a historical basis; for example, it was used by Germanys Chancellor Bismarck in the late 19th century to establish eligibility for military pensions. Although the Chancellor lived past 80, one of his intentions appears to have been to limit the number of pension beneficiaries in an era when average life expectancy at birth was less than 45 years,
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36 Technology and Aging in America more, rather than less, heterogeneous in its social, political, economic, health, and other characteristics than those under 66. A chrono= logically based label is convenient for defining population groups, but is a poor descriptor of biological function or need for various types of assistance. Further ambiguity is seen in the different age criteria for the elderly in Federal programs and public statutes. Federal housing assistance programs for the elderly use age 62, while programs under the Older Americans Act are available to those 60 and over. The Internal Revenue Service allows an elderly credit on personal income taxes for Americans 65 and over, but the one-time capital gains allowance from the sale of a primary residence is available to anyone over 55. The Age Discrimination in Employment Act (ADEA) protects workers 40 and over, although no inference is made that workers in their 40S are old. Thus, social values and policy-relevant definitions concerning old age vary widely, and often depend on the issues, programs, needs, and constituents involved. The aged as a group must be distinguished from aging as a process that varies both in different species and across subgroups within the same species. The great variation in average life expectancies across species is illustrated by the fact that mice live an average of 3 years and humans an average of 74 years. There is growing evidence that aging and the incidence of diseases associated with age also vary within species. These differences are associated with genetic factors, biological differences, environmental influences, and, for humans, socioeconomic status. For example, average life expectancies at birth range from as low as 45 in some developing countries (Gambia, Niger, and Somalia) to as high as 76 in some developed countries (Norway, Sweden, and Japan). In the United States, the average life expectancy at birth for a white female (78.7 years) is almost 12 years greater than for a black male (66.5 years). 7 Given these variations, definitions of the elderly based on chronological age are artificial. Individ7Data on racial categories used in this report are technically differentiated as white or (black and other. For convenience, black is used in the text, rather than black and other. ual variation within each age group is great. Although it is convenient and often necessary to use chronological age (e.g, in formulating pub lic policy), such boundaries must be used with caution when making inferences about the elderly as a group. Both technology and aging can affect individuals or subgroups of the same chronological age differently, depending on such other factors as their functional capabilities and the social or environmental characteristics that influence their interaction with society. Because the over-65 group is so heterogeneous, some segments of this report identify those between 65 and 74 as the young-old and those 75 and over as the old-old. When it is necessary to make still finer distinctions, persons over 85 are referred to as the very old. In certain policyrelated issues, such as older workers employment and the ADEA, the elderly can also include those 40 to 64; these exceptions to the reports basic definitions are noted as they occur. The aging of a population is a gradual process in which the proportions of adults and elderly increase while the proportions of children and adolescents decrease. This results in a rise in the median age (i.e., the age at which 50 percent of the total population is older and so percent is younger). Aging occurs when fertility rates decline or remain constant, while mortality rates remain constant or improve, especially at the older ages. COHORT V. PERIOD DATA In discussing population aging and demographic trends, two main types of data can be utilized: period data and cohort data. period, or crosssectional) data describe variables or events that occur across a population within a specified time period. Cohort data, by contrast, follow the experiences of a particular population group over a long time period. The major difference is that period data present a snapshot of different age groups in a short time period or at one point in time, while cohort data provide a lifetime picture of a particular group over many years (see fig. 5). The most useful cohort in demography is the birth cohorta group of individuals born within a certain time period, usually a calendar year or
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Ch. ZIntroduction: Technological Change and the Older U.S. Population l 3 7 Figure 5.Schematic Representation of Cohort Data and Period Data 85+ Period data 80-84 (cross-sectional 75-79 70-74 65-69 The cohort 60-64 born 1896-1900 (aged 40-44 in 1940) 55-59 50-54 45-4 9 a 40-4 4 35-39 30-34 25-29 20-24 15-19 10-14 5-9 I 1 1 t I t i I 1 I 1 J 1940 1945 1950 1955 1960 1965 1970 1975 1980 1985 Year NOTE Birth cohort data describe the events expetienced over time by a group born in the same year(s), ie as the group "ages" period data describe the events across age groups at one point m time SOURCE Office of Technology Assessment a 5-year interval. a The experiences of this birth cohort can be followed through its lifetime. Each birth cohort experiences a set of events over time that is characteristic of its aging and the historical period during which this aging occurs, the consequences of which are called cohort effects. Cohort analysis is important in gerontological study because it measures change within a group over time, as in panel or longitudinal studies. Because actual birth cohort data are not readily available for long time periods, age-specific crosssectional data over many years are often used to approximate the cohort experience. But they do not provide comparable information. Most events in a population are influenced by both cohort and period effects. For example, the kor example, persons aged 64 in 1984 belong to the 1920 birth cohort. A birth rohort can also be defined for a longer period of time kflr example, the 1915-19 birth cohort was aged 61 to 6.5 in 1 :)80 educational attainment of the elderly in 1980 is largely a result of the educational attainment of the pre-1915 birth cohorts during their schoolage years. Successive birth cohorts had higher levels of education (a period effect). As the cohorts aged and became part of the future elderly population, the average level of the total older populations educational attainment increased. In this way, earlier period effects are combined with the aging of the birth cohorts to yield new crosssectional data at a later time. For example, from 1970 to 1980 the proportion of persons over 65 who had completed 1 or more years of high school increased sharply from 30 to more than so percent. This large change was primarily due to the cohort effect of a more highly educated group aged 55 to 64 who had entered the over65 category by 1980. 9 rhe difference between cohort and period effects is illustrated b} more detailed comparison of the data on educational attainment. In 1970 on]j 30 percent of all persons o~er 65 had completed 1
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38 Technology and Aging in America For certain analyses, cross-sectional and cohort data are combined to create synthetic cohorts, which are hypothetical groups that substitute for real birth cohorts. A synthetic cohort is created by using cress-sectional demographic data and applying them to a birth cohort over its future lifetime. These hypothetical cohorts are the basis for the most commonly used life expectancy tables. Synthetic cohorts are essential because a real cohorts mortality experience requires observations dating back 100 years, and such data are not generally available. The fertility and mortality characteristics of synthetic cohorts are the basis for most population projections developed by Federal agencies. The role of these characteristics in creating synthetic cohorts is an important factor in evaluating projections of the future elderly population. Demogaphic projections of the elderly population The two major U.S. national population projections are provided by the Bureau of the Census and by the Social Security Administration (SSA). The SSA projections are primarily used for future planning of the Social Security system and its longterm financing obligations. The Census Bureau projections include all age, sex, and race subgroups of the total population and are the most commonly used population forecasts. The word forecast is used intentionally to emphasize that demographic projections are not predictions. (continued from p. 37) or more years of high school, compared with 55 percent of those 25 to 64. By 1980, the survivors of the 1970 cohort of persons over 65 had become the over-75 group. In 1980, 28 percent of those over 7.5 had 1 or more years of high school. Because most persons do not add to their formal education after age 30much less after age 65the educational level of this elderly cohort did not change as it aged during the 1970-80 decade. The cohort effect produced a slight decrease in 1980 in the proportion of those over 65 with 1 or mom years of high school (probably due to bias in educational level of the cohort survivors or a statistical artifact). Period (i.e., cross-sectional) data provide different information. By 1980 more than 50 percent of all persons over 65 had completed 1 or more years of high school, an increase of 20 percentage points for that age group between 1970 and 1980. The major reason for this increase in the period rate was the movement of the cohort aged 55 to 64 in 1970 into the over-65 category in 1980. The younger age group brought with it notably higher educational attainment levels, thereby increasing the average for the new over-65 group in 1980 (i.e., not the same birth cohort). Projections are developed in three series that differ according to the basic demographic assumptions used to create the synthetic cohorts that form the new populations. The three series use low, middle, and high estimates of each type of age-specific vital rate for l-year birth cohorts (called the cohort component methodl). The accuracy of demographic projections has improved during the last few decades with the application of more sophisticated methodologies. The most recent projections use the latest population base from the final counts of the 1980 census, revised by estimates of the population as of July 1, 1981 (see table 1). In general, the middle-series assumptions are considered the most likely to occur, and the low and high assumptions define a reasonable rate of error around the middle series. Each of these components will vary from expectations because of unpredictable cultural, economic, and biological factors. The least predictive component is fertility, which is most likely to be influenced by exogenous factors (e.g., economic conditions, government policy), to be controlled by personal choice, and to be influenced by the adequacy of contraceptive methods. The baby boom following World War II was not projected for the 1945-60 period, either in terms of the birth rate or the number of years during which fertility remained high. Nor was the precipitous decline in fertility since the early 1960s expected. Both of these fertility trends have an impact on the shortand longterm changes in the aging of the population. Mortality is less difficult to estimate, barring no major short-term deviations in age-, race-, and sexspecific trends in death rates. However, recent changes in health and medical care technologies have added an element of uncertainty to age-specific mortality rates for cohort projections. Assumptions about changes in age-specific death rates have been lower than reality in most projections during the past 30 years (19). The unprecedented increases in life expectancy at the oldest The cohort component method separately projects age-specific fertility, mortality, and immigration rates for each l-year birth cohort, using the three alternative levels of each demographic component. These scenarios are then played out over the remaining lifetime of each birth cohort to yield the projections for future decades.
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Ch. 2introduction: Technological Change and the Older U.S. Population l 3 9 000000000000000 0 000000000000000 0 ~1--l-l--vlvl-v~~v~v~-. . . . . . . . . . . . . . . . . . . . . . . .
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40 Technology and Aging in America ages during the 1970s were not anticipated in projections during that time.1* Net immigration figures tend to be most easily estimated, given the relationship of immigration rates to Federal policy, quotas, and registration procedures. However, immigration rate assumptions do not take account of the high annual total of undocumented immigrants who enter the United States. Estimates of their numbers vary greatly because no accurate data are available. These factors illustrate the need for caution in the use and interpretation of population projections. The longer the interval covered by a projection, the greater the degree of uncertainty and error in the estimates. Each successive year following the decennial census compounds the inaccuracy of the estimates for the basic populations in the projections. Projections of the numbers of older people are more reliable than those that yield percentage figures; percentages 1 IProjectlons based on the increased rates of decline in age-specific mortality rates for the older population subgroups (by age, race, and sex) during the 1968-77 period yield a total older population in 200t) that is almost 4 million persons more than was officially projected by the Census Bureau in 1977an underestimate of more than 10 percent. The most recmt official projections have been adjusted upward to account for this dramatic change. Demographic trends Among the population changes experienced by the United States during this century has been unprecedented growth in the number and proportion of older Americans. Demographic aging, its changing pace, and the technological factors that have both created it and responded to it point to substantial challenges and opportunities for American society. Improved understanding of these trends is important in enabling both the public and private sectors to anticipate and thus respond appropriately to the needs of future cohorts of elders and to benefit from the resources they possess. The most significant demographic trends are: l rapid growth of the over-65 population during most of this century and its continued high rate of growth during the next 50 years depend on the number of persons in every other age group, which depend largely on fertility trends over time (the least predictable variable for projections). projections of elderly households are even less reliable, because household formation and size are influenced by factors such as marital status, income, health, extended family structure, tax policy, and other variables that are themselves difficult to project. A final source of potential inaccuracy in projections is the base population (or baseline data) from which future cohorts are developed. As shown in chapter 9, for example, the 1979 estimates of tenure (i.e., owners v. renters) for elderly households were very different from the totals enumerated by the 1980 census .*2 Taking these caveats into consideration, the following section reviews the demographic trends that have had the greatest influence on the aging of the U.S. population, and looks at current projections of the older population. lz~ew household p~jections based on 1980 census COUntS halre not been officially generated; because the most recent official projections use 1978 estimates from the Current Population Survey, the potential for error remains strong. l l (the aging of the baby boom generation, resulting in the elderly boom during 201o to 2025); changes in life expectancy at birth and at the older ages, especially the most recent increases in the rate of improvement for the very old; and aging of the older population itself, with the fastest rates of growth among the oldest subgroups (sometimes referred to as an aging implosion). The growth of the older population In 1900 only 4 percent of the total U.S. population was over 65. By 1980 this proportion had risen to 11.2 percent and the number of older Americans exceeded 25 million (see table 1). In
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Ch. 2Infroductiort: Technological Change and the Older U.S. Population 4 7 1983 the elderly population was estimated to have surpassed 27 million, and to account for 11.6 percent of the total. The growing proportion of older persons has boosted the median age significantly in less than three generationsfrom just under 23 years in 1900 to over 30 by 1980. This growth in the number and proportion of the elderly is expected to continue, but at a slower pace, through the end of the century. The most recent projections indicate that the ranks of the elderly will increase by at least 30 percent by the year 2000, when they will constitute more than 13 percent of the total population. By recent standards, this projected growth is relatively small, due largely to the effect of the small birth cohorts and relatively high infant mortality rates during the Depression and World War II period of 1925-45. Both of these factors will limit the number of older persons in future decades (when net immigration is held constant). The effect of the baby boom birth cohorts on the future older population will be felt after 2010, when Americas elderly boom begins. By 2020, the elderly population is expected to exceed 51 million and to account for more than Ii percent of the Nations population .13 The projected increase in numbers of older Americans between 2010 and 2020more than 12 millionis only slightly less than the number of those expected to join the over-65 population during the entire 30-year period from 1980 to 2010 (see table 1). Changes in average life expectancy During most of this century, gains in the life expectancy of Americans have occurred because of improvements in public sanitation, hygiene, control of infectious diseases, prenatal maternal and postnatal infant care, and, since the 1940s, antibiotics. These improvements have sharply reduced infant mortality, which began to fall in the early 1930s, resulting in higher survival ratios for successive birth cohorts. Iqhese prolecte~ figures are based on the most recent middkseries assumptions: 1.9 total births per woman by 1 985 and constant thereafter; life expectancy at birth increasing to almost 80 years for whites by 2050 and for blacks b~f 2080; and net annual immigration of 450,000 persons, only 41 percent of infants born in 1900 survived to reach age 65; by 1980 this proportion had risen to more than three-fourths .14 In 19 00 ) average life expectancy at birth was 47,3 years; those who reached 65 could expect to live another 11.9 years. By 1983, average life expectancy at birth had increased by more than 27 yearsto 74.7. The change in life expectancy at age 65, however, has been far less impressive for most of this century. In 1983 this figure was just 16.8 years, on average, for those aged 65an increase of only 4.9 years since 1900 0 More notable is the recency of the increase in life expectancy at older ages. The average life expectancy of those aged 65 in 1950 was 13.9 yearsonly 2 years higher than in 1900, reflecting an improvement of only 17 percent during the entire half-century (see table 2). Since 1950, however, the corresponding figure has already risen by 2.9 years (to 16.8 for 1983), a 20-percent improvement in just 33 years. Yet this dramatic improvement in old age survivorship masks still more recent advances in age-specific mortality. Of the 2.9 years gained since 1950, 1.6 years were added between 1970 and 1983. This increase is the largest change ever recorded in life expectancy at age 66 in such a short period of tim~more than one-half of the total gain since 1950 occurred in the last 13 years of this 33-year period. The aging of the older population This improvement occurred at the same time that the older population itself was aging, most notably since 1960. The growth of the very old population coincides with improvements in medical technologies, especially lifesaving measures in acute care (e.g., coronary bypass surgery and cardiac pacemakers) and life-sustaining technologies (e.g., diagnosis and treatment of hypertension). The survival of increasing proportions to the very old ages also coincides with the establishment of the Medicare program, which gave older people greater access to medical technology. Iq]nfant mor~]it}, has dropped sharplv from 56 deaths per 1 /00~ life births of infants under I year of age in 1935 to a rate of about 11 in 1982 (24).
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42 l Technology and Aging in America Table 2.Life Expectancy at Birth and at Age 65, by Race and Sex, United States, Selected Years, 1900-82 (average number of years remaining) Total White Black and other Both Both Both Age and year sexes Male Female sexes Male Female sexes Male Female At birth: 1900 . . . . 47.3 46.3 48.3 47.6 46.6 48.7 33.0 32.5 33.5 1950 . . . . 68.2 65.6 71.7 69.1 66.5 72.2 60.8 59.1 62.9 1960 . . . . 69.7 66.6 73.1 70.6 67.4 74.1 63.6 61.1 66.3 1970 . . . . 70.8 67.1 74.7 71.7 68.0 75.6 65.3 51.3 69.4 1980 . . . . 73.7 70.0 77.5 74.4 70.7 78.1 69.5 65.3 73.6 1981 . . . . 74.1 70.3 77.9 74.7 71.0 78.5 70.3 66.1 74.5 1982 . . . . 74.5 70.8 78.2 75.1 71.4 78.7 70.9 66.5 75.2 At age 65: 1900 . . . . 11.9 11.5 12.2 11.5 12.2 10.4 11.4 1950 . . . . 13.9 12.8 15.0 12.8 15.1 12.5 14.5 1960 . . . . 14.3 12.8 15.8 14.4 12.9 15.9 13.9 12.7 15.2 1970 . . . . 15.2 13.1 17.0 15.2 13.1 17.1 14.9 13.2 16.4 1980 . . . . 16.4 14.1 18.3 16.5 14.2 18.5 15.5 13.5 17.3 1981 . . . . 16.7 1982 . . . . 16.8 SOURCES: National Center for Health Statistics, Health: Ur)/tedStates, f98Z, DHHSpublication N0.(PHS)83-1232, Public Health Service (Washington, DC: U.S. Governmerit Printing Office, 1982); and4Annual Summary of Births, Deaths, Marriages, and Divorces: United States, 1982JMorrth/y Vita/ Statistics Report 31:13, DHHS publication No. 83-1120 (October 1983) and 32:4, DHHS publication Supplement No. 83-1120 (Hyattsville, MD: Public Health Service, August 1983). Table 3 shows the increasing proportion of those over 85 in the total older population since 1960 and the expected growth of the very old population through 2020. In 1960 about 1 in 20 older persons was over 85; by 1980 that proportion had grown to 1 in 11 (8.8 percent). During the same period the proportion aged 65 to 74 fell from 66 to 61 percent of the total. Because of the small birth cohorts during the 1926-35 Depression period, the 65 to 74 group is expected to be just one-half of the total older population at the turn of the century, while those 75 to 84 are likely to constitute more than one-third of all elderly persons, and those over 85 to reach their highest proportion, close to 15 percent. Despite the possibility of small errors in these projections, the implosion, or aging of the older population itself, promises to be as important as the sheer growth in total number of older persons. The positive and negative impacts on society of the growth of this aging elderly population, brought about in large part by increasingly rapid technological change during the last halfcentury, will inevitably spawn additional new technologies. The dimensions of this dramatic transformation and its implications for society are not easily comprehended. Recent changes in the age composition of the older population tend to obscure the Table 3.ReIative Distribution of the Population Aged 65 and Over, by Selected Age Groups, Selected Years, 1960-2020 a Population age 65 and over Percent distribution by age group Number Year (in millions) Percent 65-74 75-84 85 and over 1960 ....., . . . . . . 16.6 100% 66.4%0 28.O% 5.60% 1980 ....., . . . . . . 25.5 100 61.0 30.2 8.8 2000 . . . . . . . . 35.1 100 50.5 34.8 14.7 2020 . . . . . . . . 51.4 100 57.9 27.8 14.3 aprojections for years 2000 and 2020 are based on middle-series assumptions SOURCE: U.S. Bureau of the Census, Projections of the Population of the United States: 1982-2050 (Advance Report), Current Population Reports, Series P-25, No. 922, October 1982.
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Ch. ZIntroduction: Technological Change and the Older U.S. Population 43 actual improvement in elderly survivorship when data are reported for the older population as a whole. This problem is avoided by using age-specific, as well as age-adjusted, death rates .15 From 1940 to 1978 the age-adjusted death rate for the elderly decreased by more than 37 percentn percent more than indicated by unadjusted rates for the same period. Similarly, ageadjusted death rates for older women and men decreased by greater proportions than indicated by the overall rate (5). These age-adjusted declines in mortality among the older age groups for both sexes are primarily due to the improved technologies that have contributed to the growth of the very old population. When plotted on an annual basis, elderly death rates for the 1955-67 period form a plateau, with relatively little change in real mortality rates (i,e, age-adjusted) in the older population. But during the 1968-80 period, sharp reductions in elderly mortality rates occurred. Average annual reductions in age-adjusted death rates for this period were 1.5 percent for older males and 2.1 percent for older females. The nature of this recent trend in real mortality decreases among the elderly is shown in figure 6. The post-1967 mortality declines among the elderly have been greater than for any previous period in American history, and suggest a new era characterized by continued decreases in age-adjusted elderly death rates during the rest of the century (see also table 4). Trends in life expectancy by sex and race Figure 7 shows that sex differences in age-specific life expectancy have become increasingly greater than racial differences since the 1930s. Life expectancy at birth for women has inFigure 6.-Age-Adjusted Death Rates for the Population Aged 65 and Over, by Sex, United States, 1940-80 90.0 70.0 60.0 I \ 30.0 I I 1 I 1940 1945 1950 1955 1960 1965 197019751980 Year SOURCE: US Senate, Special Committee on Aging, Developments in Aging 1983, Volume 1, Washington, DC, Feb 29, 1984. Based on unpublished tabulations by L Fingerhut, National Center for Health Statistics creased far more rapidly than for men; the most dramatic improvements have been for black women, whose life expectancy at birth surpassed that of white men for the first time in 1967. This demographic change began at the turn of the century, when female survivorship rates started to improve more rapidly than male survivorship rates. In 1900 life expectancy at birth was distinguished by a great disparity between blacks and whites, rather than between the sexes, as shown in figure 7. By the 1930s the life expectancy of black women clearly began to accelerate relative to that of men of both races. By 1980 black womens life expectancy approached that of white women, who have the highest level. As a whole, newborn girls can now expect to live, on average, 8 years longer than newborn boys. 16 This life expectancy difference by sex is consistent with the rates in many industrialized countries, particularly those of Northern Europe. Average life expectancies at birth in Denmark, 15 Age-asjusted demographic rates providetrue indicatiors rates provide true indicators of agespecific change, because they control for the effects of changes in population age composition that can have a biasing effect on vital rate data over time. The age-adjusted rates for two or more points in time are directly comparable, because they indicate hat the rates Would be if the populations had the same age composition at those points in time, Measures using age-adjusted rates in demography are the same as measures using constant dollars in economic researrh. The base year for age-adjusted rates is usually 30 to 40 years earlier in order to show a definite trend over time, 16 Note that life expectancy figures are derived from life table calculations that utilize age-specific period death rates by race and sex. The life table (population begins with a synthetic (or hypothetical) birth cohort whose mortality f experience over its entire future lifetime is based on current age-, sex-, and race-specific death rates. It is possible that these rates for the synthetic cohort of overestimate e the mortality experience of the real birth cohort as it ages during the next 85 years, thus underestimating actual improvdernents in future life expectancy.
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44 Technology and Aging in America Table 4.Average Annual Percent Change in AgeAdjusted Death Rates for Persons Aged 65 and Over, i by Sex and Age, United States, Selected Periods of Years, 1940-80 Years Sex and Age 1940-54 1955-67 1968-80 Males: Age 65 and over . . . . . . -1.1 /0 0.2%0 1 .7% 65-69 . . . . . ., . . -0. 7 0.1 -2.1 70-74 . . . . . . . . -1. 0 0.2 -1. 6 75-79 . . . . . . . . -1.1 0.2 .7 80-84 . . . . . . . . -1. 3 -0. 4 -1. 3 85 And over.... . . . . . . -1. 5 0.9 -1. 4 Females: Age 65 and love -2. 0 -1. 0 -2. 3 65-69 . . . . . . . . -2. 3 -1.1 -2. 3 70-74 . . . . . . . . -2. 2 -1. 3 -2.1 75-79 . . . . . . . . -1. 9 -1. 2 -2. 6 80-84 . . . . . . . . -1. 9 -1.1 -2. 3 85 And over . . . . . . . -1. 3 0.0 -2.1 a Age adjusted to the United states population aged 65 and Over as Of 1940 SOURCE: National Center for Health Statistics, Changes in Mortality Among the Elderly: United States, 1940-78 Supplement to 1980. Vital and Health Statistics, Series 3, No.229, DHHS publication No. (PHS)64-1406a, Public Heatth Service (Washington, DC: U.S. Government Printing Office, 1964) Figure 7.Average Life Expectancy at Birth, by Race and Sex, United States, 1900-80 1900 1910 1920 1930 1940 1950 1960 19701980 Year SOURCE: National Center for Health Statistics, VitaL Statistics UnitedStates, 1980. Life Tab/es, vol. II, sec DHHS publication No. (PHS) 84-1104 (Hyattsville, MD Public Healh Service, May 1984) Sweden, Norway, the Netherlands, and other European countries are slightly higher (by l.0to 1,5 years) than in the United States, and have similar differences in life expectancies by gender. But most of these industrialized countries have life expectancies at age 65both average and for men and womenthat are either equal to or slightly below those of the United States. This anomaly is partly explained by the older age structure of most of these European countries relative to that of the United States, as measured by median age or by the proportion of the total population over 75.17 The Sex differences in life expectancy at birth suggest that the united States can expect continued discrepancy between the survival ra ties of men and women, even as the proportion of older women increases in future years, The sexand race-specific changes in life expectancy during the last half-century have greatly affected the composition of the older population. By 1983 there were over 5 million more women than men over 65, a ratio of 3 older women to every 2 older mem As recently as 1960 this ratio was 5 to 4. This discrepancy increases notably for the very old; among those over 85 there are almost 6 women for every 2 men (42 men for every 100 women. There are no indications that this general pattern will change for the ensuing decades into the 21st century. Yet the rate at which womens life expectancy at birth and, in particular, at age 65 increases relative to that for men is not expected to grow at The proportions of persons over 75 in most Northern European countries range from 0.5 to 2.3 percent higher than in the United States, a demographically large difference, Higher age-specific death rates at the oldest ages partly explain the similarity in life expectancy at age 65 between these countries and the United States. But higher life expectancies at birth, despite the older age structures, indicate that both female and male life expectancies at ages under 65 are usually higher than in the United States.
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Ch. 2Introduction: Technological Change and the Older U.S. Population 45 the same pace that it has for the last four decades (14). As shown in table 2 and figure 8, the 1970-80 increases in life expectancy at age 65 have been only slightly lower for white men than for white women, while slightly higher for black men. In general, older men and women are now benefiting similarly from the recent decreases in death rates from most causes of mortality, but the large sex differentials in life expectancy at birth and at age 65 remain. These trends in age-specific mortality for both sexes indicate that more people will not only be living to older ages, but will also be living considerably longer after age 65 than ever before in the United States. A visual image of how the demographic structure of the U.S. population is expected to change emphasizes the potential impact of these trends. Although not directly representative of the most recent projections from which table 1 was developed, figure 9 presents a recent set of population pyramids 18 based on projections made in 1980. The baseline data for the projections assumed higher total fertility rates, lower l~Popu]~tlO1l p\~rar11i~5 ~re ~r~ptrk re[]reserltat ions of th[: S~X and age composition of a population, using either I or 5-}war age inter~als for each sex to age 85 and m er. The diiigranl is called a pJrrarnid beCa USe the st Iucturr of most populations in earlier periods closel~r resembled the tapering form of a pyramid, i~rith decreasing numhers and proportions in surce.ssi~wl~ older age groups. he measure used for the horizontal axis can he either iIIMolute nunl lwrs, as in fig, 9, or percentag(s of the IOtiil. Figure 8.Average Life Expectancy at Age 65, by Race and Sex, United States, 1900-80 1900 1910 1920 1930 1940 1950 1960 1970 1980 Years SOURCE Off Ice of Technology Assessment, based on data from the National Center for Health Statistics, Vital Statistics of the United States, 1980 Life Tables, VO l II sec 6 DHHS pub No. (PHS) 84-1104 (Hyattsvllle, MD: Public Health Service, May 1984)
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46 Technology and Aging in America t ----r
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Ch. 2introduction: Technological Change and the Older U.S. Population l 4 7 ultimate life expectancies, and higher levels of net immigration than more recent projections. The aging of the populations in these pyramids, as depicted by the degree to which they become squared in ensuing decades, is less than the most recent projections would anticipate. They therefore reflect the minimum aging that is expected to occur in the U.S. population structure during the next 50 years. The wave of the large baby boom cohort in 1960 (ages 0 to 9 in the pyramid) continues to exert its influence as it ages into the years 2010-30. The squaring of the populations structure is accompanied by the rapid rate of growth in numbers of older women in successive decades. Even if mortality rate reductions at the older ages become similar for both sexes in ensuing years, the current higher survival ratios of women over 55, who presently outnumber men in this age group by almost 7 million, will produce higher numbers of surviving women for at least the next 30 to 40 years. Major causes of death in old age Dramatic percentage decreases in death rates have been occurring in all older age subgroups, as shown in table 4. Indeed, persons reaching 85 can expect to live, on average, beyond 92. As is true of mortality declines for the elderly in general, the major contributor to these decreases in death rates of the very old has been the age-specific decline in cardiovascular deaths. As has been noted, there is no clear evidence to explain these dramatic improvements among all older age groups, but the most likely factors include: l l l recent technological advances in the care of acute illnesses that might otherwise have led to death; improved monitoring and control of risk factors such as high saturated fat and cholesterol diets, cigarette smoking, and hypertension; and changes in long-term care of the chronically impaired, both in institutions and in the community. Underlying these newly emerging improvements in life expectancy at the older ages are recent declines in age-specific mortality from acute episodes of infectious diseases (e.g., pneumonia and influenza) and the major chronic diseases, especially diseases of the heart and cerebrovascular diseases (stroke). The latter two disease categories, plus malignant neoplasms (cancers), currently account for three out of every four deaths among the elderly, 19 an overall proportion that has remained unchanged since World War II. However, the relative proportion of deaths from each of the three leading causes of elderly mortality has changed over the last 30 years, in part explaining the recent improvements in life expectancy at older ages. HEART DISEASE MORTALITY Coronary heart disease remains the Nations leading cause of death, both among the elderly and in the total population. Although 46 percent of all deaths among persons over 65 in 1980 were due to cardiovascular diseases, age-specific death rates from these causes have steadily declined among the elderly during the past three decades, particularly since 1970. Between 1970 and 1979, the death rate from heart disease for persons 65 to 74 declined 22.7 percent-the most substantial decrease ever recorded in a decade for this disease category and this age group. For those 75 to 84, the decrease was 14.5 percent; the over85 age group had an 18.7-percent decrease during this same period. The relative risk of death from heart disease increases with age, even among the elderly. In 1980, heart disease accounted for less than 41 percent of deaths for persons 65 to 74, but almost 49 percent of deaths among those over 85, The variations in heart disease mortality within these age groups by race and sex are noted in appendix A, In general, proportional improvements have been highest for women and blacks, except for increases among blacks 75 to 84. 19 Cause of death data utilized by the National Center for Health Statistics (NCHS) are based on information contained in death certificates. In general, the cause of death in NCHS tabulations reflects the underlying cause or event that led to death. This cause may differ from the immediate cause of death that is reported on the death certificate (e.g., a death from a skull fracture due to an automobile accident would usually be reported as due to the accident rather than the skull fracture). In 1978 nearly 75 percent of all death certificates listed more than one condition and 15 percent had four or more. Cause of death data generally indicate the underlying condition, but not the complicating ones that may have contributed to the death (23).
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48 l Technology and Aging in America There are no definitive explanations for the heart disease mortality differences within or between the racial groups. Similar differences are also seen in other causes of death and in morbidity rates. Some gerontological studies show that elderly blacks face the double jeopardy of old age and minority status; the problems of aging are compounded for minorities by lifelong confrontations with lower social, economic, psychological, and physical health status. These disadvantages are reflected in their greater incidence of chronic and acute disease throughout life. These health and social disadvantages disappear only among the very old, as shown by lower death rates by sex for blacks in the over-85 group. One hypothesis suggests a leveling effect, which reduces race differences in health and functional ability at the oldest ages (18). Mortality differences change in the same manner; beyond age 75, blacks have higher life expectancies than whites (19). 20 For heart disease mortality, this leveling effect occurs beyond age 85. CEREBROVASCULAR DISEASE MORTALITY Cerebrovascular disease (stroke) is a major cause of death for the very old. Although only 7 percent of deaths to persons aged 65 to 74 are due to strokes, this proportion reaches 14 percent for those over 85. However, remarkably high rates of decrease in deaths from strokes among the elderly occurred during the 1970s, averaging 3 to 5 percent per year. Key factors in reducing death rates from stroke are increased awareness, diagnosis, monitoring, and control of hypertension and levels of serum cholesterol. Recent reports from longitudinal studies suggest that improvements in diet, exercise, and other lifestyle habits also contribute to falling death rates from stroke (see ch. 4). 20 Caution is advisable in discussions of race differences in death rates among the elderly, especially the very old. Age-reported data for blacks are likely to be less accurate than for whites at the oldest ages, due in part to less accurate birth records for older blacks. Death rates for older blacks have been found to be understated. Thus, differences in data on elderly mortality rates by race are likely to be artificially greater than in reality (15), CANCER DISEASE MORTALITY Cancers accounted for 19 percent of all deaths among the elderly in 1980. 21 Age-specific rates of this second leading cause of death among older persons (and among the general population) have increased in recent years, primarily due to a notable rise in the rates of lung cancer for older men and women of all races. In 1980 lung cancer among women aged 65 to 74 replaced breast cancer as the leading cause of female cancer mortality. older black men have the highest rates of death from cancer among those over 85. In contrast, older black women have had lower or very similar mortality rates from all cancers when compared with older white women. Recent studies of racial differences in the incidence of specific types of cancers among the elderly from 1973 to 1978 show a leveling effect between race, age, and incidence of most cancers among older men (16). No clear pattern of cancer incidence by race and age was discerned for women. Although death rates from cancer increase by age within the older population, the increases are small when compared with those for deaths due to heart disease. The likelihood of dying from cancer decreases with age; although 26 percent of all deaths among persons 65 to 74 in 1980 were due to cancer, this proportion sharply decreases-to just 10 percent-among those over 85. Cancer is far more likely to be a killer of the young-old than the very old. Future life span and prevalence of chronic diseases Because the elderly are becoming an ever-larger proportion of the U.S. population, their physical and mental health status is an increasingly important concern. Although recent decreases in death 21 The proportion of deaths from cancer among persons over 65 is lower than for those 45 to 64. For the 45 to 64 age group, the proportion of deaths from heart disease is lower and the proportion of deaths from cancer is higher than for the elderly. Among persons 25 to 44, accidents are the major cause of death, followed by cancer and heart disease,
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Ch. 2/ntroduction: Technological Change and the Older U.S. Population l 4 9 rates from heart disease and stroke among older Americans have ushered in a new period of increased old-age longevity, this quantitative increase has not been matched by qualitative improvements in the health status or functional abilities of the older population. Chronological age continues to be directly associated with greater risk and incidence of most chronic diseases and functional impairments. Despite reductions in mortality rates from acute episodes of heart disease and stroke, the prevalence of chronic conditions associated with these and other diseases persists among the elderly. As populations age, they face an increasing prevalence of major mental diseases such as schizophrenia, affective disorders, brain syndromes associated with senile brain disease (e.g., Alzheimer disease) and arteriosclerosis, and epilepsy. This trend has been called the rising pandemic of mental disorders and associated diseases (11). Pessimistic reviews of the prevalence of mental diseases in aging populations may be accurate in the short-term, but there is disagreement about their long-term persistence, their age of onset, new technologies that may alleviate or prevent them, and the consequences that can be expected at older ages in future decades (9). There is general agreement that although notable life expectancy improvements should be achieved during the next two generations, there is an upper limit for human longevity (1,12), based on the belief that most types of human cells have an internally determined limit to the number of times they can reproduce (10). Some theorists accordingly suggest that mortality is not necessarily linked to disease and that future technologies to control or eliminate disease will not yield an everincreasing or even a major increase in human life span 22 22 It is important to distinguish between the terms life span and life expectancy which are sometimes confused in discussions regarding longevity. Life span is best described as the biological upper age limit that any member of a species could possibly reach. Current estimates suggest a human life span of 110 to 115 years. A S explained earlier in this chapter, life expectancy is a statistical measure of the expected average number of years to be lived for different subgroups of a population. For example, life expectancy at birth in 1983 was 74.7 years; for black males it was 65.2 years, while for white females it was 78,8 years. These two different constructs should not be used interchangeably. Other researchers estimate that the control or elimination of all major chronic diseases could produce a 20-year increase in life expectancy before biological limits on longevity take effect (10). As the ideal curve in figure 10 indicates, this scenario presents a maximum life expectancy at birth of no more than 86 years, because most of what has been called premature death from chronic diseases has already been eliminated. The large decreases between 1970 and 1979 in older age mortality are sometimes viewed as the beginning of the final era of improvement in life expectancy, whether at birth or at age 65. Figure 10.Past, Current, and Projected Ideal Survival Cures for the Population, United States, Selected Years, 1900-80 100 7 5 50 2 5 0 0 10 20 30 40 50 60 70 80 90 100 Age 00 75 50 1900 25 I I 1 1 I O 10 20 30 40 50 60 70 80 90 100 Age SOURCE. Adapted from Fries, 1980; and Strehler, 1975.
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50 Technology and Aging in America Scenarios of the future also offer varying interpretations of the burden of chronic disease in the older population. One holds that although chronic disease incidence may increase, the average age at onset of these diseases and their disabling effects will increase faster than will life expectancy, producing a compression of morbidity in which the average period of chronic disease and disability in old age will be less than current levels. People would be ill or impaired for shorter periods of time before biological senescence led to death (7). Another scenario projects longer average periods of disability and chronic illness in the future, based on the assumption that recent lifesaving and other health care technologies have had a greater impact on longevity than on the incidence of chronic disease, Increases in life expectancy would be accompanied by considerably longer periods of ill health and disability (-9). Still other models of aging find no clear evidence of an absolute limit on the longevity of human cells or on their ability to reproduce. Proponents of this view feel that all deaths are due either to accidents or disease, rather than to biological senescence (12). Most reviews of available data indicate that recent advances in life expectancy at the oldest ages are due to technological advances in the diagnosis and treatment of chronic diseases and that the potential is high for further improvement in longevity from the control of chronic diseases The experience of other countries with higher life expectancies, where the incidence and prevalence of the major killer diseases are notably different, is instructive. For example, Japan has a higher average life expectancy at birth than the United States (76.3 years as compared with 74.7), due in large part to much lower heart disease incidence and attendant mortality rates. But the major cause of death in Japan is stroke, which is ranked third in the United States. If Japan were to reduce its incidence of stroke to a level similar to that of the United States, additional years would be added to already high Japanese life expectancy. Similarly, if the United States could decrease its incidence of heart disease to Japanese levels, even greater increases in American life expectancy could be achieved. If senescence rather than diseases were in fact a major killer, life expectancy at the oldest ages would not be showing such great improvement. Reductions in the rate of aging of cells, as demonstrated in nonhuman clinical and cellular studies, could possibly delay the age of onset of chronic disease as well as significantly increase life expectancy (21). If future technologies reduce the rate of human cellular aging then significant increases in human life expectancy and life span could occur with no corresponding increase in the period of morbidity among the elderly (26). Some researchers hold that we are on the threshold of major gains in human life expectancy because of prospects for identifying specific genes related to longevity 23 (30). New technologies may yield methods for improving the efficiency of the immune system. One method would control the problem of autoimmunity, in which the bodys immune system attacks the good cells along with the bad. Another approach contends that accumulated damage to DNA, the message center of the cell, results in decreased rates of DNA repair as humans age. New methods and technologies for improving the DNA repair rate for longer periods of time may, some researchers suggest, be a major step toward increased longevity. Another possible life span extension method is the nutritional restriction diet. Current studies on mice indicate that the rate of aging can be reduced and life span increased in mice that receive carefully restricted diets. The application of technologies such as antioxidant and membrane stabilization processes, altering neuroendocrine hormone balance by hypophysectomy (surgical alteration or removal of the pituitary gland), or drug therapy have also been hypothesized as life extension methods (3). Some theorists suggest that combinations of two or more of these proposed technologies can yield 20= to 30-year increases in life span during the next generation. Recent work in these areas of life span extension and changes in rate of aging is provocative, but fails to answer questions about the application of animal study results to humans. 23 The example in humans is a part of the sixth chromosome that is considered the center of the immune system. It is known as the major histocompatibility complex and is being studied to understand its relationship to rates of cellular aging and immune functioning.
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Ch. ZIntroduction: Technological Change and the Older U.S. Population l 51 The long-term effects of applying such methods to humans remain unknown. Other questions concern the time period in which such applications or their effects, if any, could occur for human populations. Recent data indicate that the age of onset and the prevalence of chronic conditions among the elderly have not changed in accord with recent increases in average life expectancy at age 65 (2,17). Because there is as yet no way to prevent (or effectively treat or cure) major chronic diseases such as osteoarthritis and Alzheimer disease, there is little reason to postulate declining incidence of these disabling conditions among elderly cohorts in the near future (see ch. 3). And as the older population ages in ensuing decades, the prevalence of these conditions could also rise. Contrasting views hold that the data do not accurately account for todays healthier behaviors among portions of the younger population, as suggested by data on one subgroup of young persons that show lower blood pressure, serum cholesterol, and cigarette consumption levels than their parents generation (4). Proponents of this belief argue that if healthy behaviors were encouraged among all age groups, healthier future cohorts of elderly persons would result (6). Investigation of the implications of these behaviors for their possible long-term effects on health (e.g., heart conditions or osteoarthritis) and functional ability (e.g., Alzheimer disease) is in its infancy (see ch. 4). But if projected gains in life span and/or average life expectancy were to be achieved within onegeneration, these dramatic changes would take place just as the baby boom cohort comes of age as the elderly boom of the 2010=25 period. The implications of this possibility are profound in terms of both added productivity among the elderly and increased demands on societal resources. Implications of chronic disease and disability These emerging technological and demographic trends have important and varying implications for Federal policies related to the provision of health care, social services, long-term care, and income supports to the elderly. The demand for these types of supports and the resources and capabilities that increased numbers of older per sons contribute to society will depend on the nature of the population aging process and the pe riod of morbidity that can be expected Additional impacts from these changes in technology and aging will involve the marital status, living arrangements, extended family size, work and retirement patterns, and other characteristics of future elderly populations characterized by higher life expectancies. Given current indications, the following characteristics and consequences of an aging American population and anticipated technological change are likely to dominate Federal aging policy debates for the short-term future to the turn of the century: l l l the growing prevalence in the older population of certain chronic physical and mental conditions, and functional impairments resulting from them, especially among the very oId; in contrast to the predominance of the current acute-care medical model, a growing need to develop appropriate programs to care for persons with chronic conditions, including provisions for needed social as well as medical services; developing options and evaluating the relative costs, both public and private, for different modes of long-term care in different settings; questions regarding appropriate medications and evaluations of their positive or negative effects on older persons; the possible role of healthier behaviors in reducing the incidence or severity of chronic conditions and maximizing the quality and productivity as well as length of life at older ages;
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52 Technology and Aging in America l l l l l l l the role of informal v. formal social, health, and medical supports in responding to current and future long-term care needs of the elderly; the need for institutionalization in caring for those severely ill, highly dependent elderly and disabled persons who require the highest levels of 24-hour skilled nursing care; continuing pressure to contain the costs of medical, social, and long-term care services while maintaining their quality and accessibility for all persons; the increasing interest in and development of information technologies that can help the elderly in self-health care and maintenance of functional ability; the ability to respond to the preferences of most older people to live as independently as possible in comfortable, safe, convenient, and familiar residential settings for as long as possible; a growing range of housing options and technological choices that can respond to the desires and needs of older persons with various levels of functional impairments to carry on their daily activities; and the trends in labor force participation and functional status among the elderly and the potential for workplace technologies to either displace older workers or provide expanded opportunities for new or continued employment. An important challenge in relation to these issues is the need to recognize the heterogeneity of the older population in terms of the attitudes, preferences, social characteristics, and health status of its members. It will also be important for Federal policy to carefully anticipate the growing numbers and proportions of older persons who will be most (at risk of chronic disease and related disabilities. These at risk individuals will either require institutionalization or need some level of supportive health and social services in the community. The following section focuses on the relevance of health, functional impairment, and the environment of the elderly to highlight the interdependent aspects of these characteristics and their impact on the lives of older Americans. The other chapters of this report present detailed information on these areas. Severity of chronic conditions and patterns of institutionalization In 1983 there were more than 1.3 million older Americans in nursing homes percent of the over-65 population. 24 This is twice the proportion of elderly persons who lived in nursing homes in 1960. This increase is largely due to the aging of the older population itself and, in particular, to the prevalence of very old women who are widowed. These women are at high risk of institutionalization because they are most likely to live alone, to have no informal support network, and to be poor (i.e., eligible for Medicaid reimbursement for nursing home care; see chs. 7 and 9). If current age-specific trends persist, greater rates of institutionalization among the elderly can be expected as the population continues to age, At any one time, about 10 percent of the over-75 population are institutionalized. More than 1 in 5 (23 percent) of those over 85 are in institutions. Recent projections, using revised 1977 baseline data, show an increase of 83 percent in the elderly nursing home population (to 2.2 million residents) by the year 2000, According to these projections, the very old will become an ever-growing portion of all older persons in nursing homes (see fig. 11). By 2020, when the young-old cohort of the elderly boom is 65 to 74, there could be 3 million elderly persons in nursing homes, more than one-half of whom would be over 85. By 24)40, as the elderly boom cohorts reach the very old ages, the numbers of nursing home residents could skyrocket to 6 million or more, threefifths of whom would be the very old. Revised estimates that reflect the most recent aging trends would yield even higher numbers. The median entry age of nursing home residents has increased steadily since 1960 to the current age of 80. The median age of residents is 83. Although the young-old are largely able to avoid nursing homes, the growth of the old-old and their much higher risk of institutionalization will 24 Persons over 65 account for approximately 85 percent of all nursing home residents, a figure that has changed little during the last 25 years.
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Ch. 2introduction: Technological Change and the Older U.S. Population l 53 Figure 11 .Projections of the Nursing Home Population Aged 65 and Over, United States, 1980-2050 6 5 4 3 2 1 0 85 and over 75-84 65-74 2.60 1.69 1980 1990 2000 2010 2020 3.02 2030 4.90 2040 5.39 2050 SOURCE: U S. Senate, Special Committee on Aging, Developments in Aging: 1983, Volume 1, Washington DC Feb 29.1984 Based on most recent revised estimates of the 1977 population base, U.S. Bureau of the Census Series P-25, No. 917-1977, estimated, and Series P-25, No. 922, October 1982. Middles Series Projections; and the National Nursing Home Survey (1977), National Center for Health Statistics. be a major Federal concern in future years. unless the incidence of severe mental and physical disabilities related to increased prevalence of chronic diseases among the very old decreases, and assuming that the aging of the older population continues, a greater share of the total older population of the future can be expected to require either 1) full-time skilled nursing care, primarily in institutions or 2) increased custodial and other forms of long-term care in the community. In fact, some estimates show that twice the number of persons now in nursing homes are in need of some type of long-term care in the community (2). One consideration for Federal policy is the extent to which some proportion of this highly dependent population could be either equally or better cared for in a different residential setting. There is no consensus on the proportion of the institutionalized elderly who could be (released from nursing homes. Estimates of those who could receive alternative forms of care or who are considered unnecessarily institutionalized range from none to more than 40 percent (29,32). The difficulties with such estimates lie in the different assumptions that are made regarding the institutional populations characteristics and the relationship of these characteristics to the types of care required. There is little evidence on which to base estimates of the numbers of current nursing home residents who could be cared for in other settings, in part because of a dearth of information on alternative settings and types of formal long-term care (see ch. 7). Nonetheless, three categories of characteristics are the strongest predictors of nursing home residency: 1) dependency in toileting and eating, 2) dependency in bathing and dressing, and 3) mental disorders (31). These highly interrelated predictors are particularly applicable for the very old and those who live alone. For example, the risk of mental confusion increases notably in the oldest ages and is sometimes the reason that individuals are unable to feed, bathe, or dress themselves. Estimates from national surveys and other sources indicate that, despite the primary diagnosis for admittance, about one-half of all elderly nursing home residents suffer some degree of mental confusion. Other data indicate that the degree of dependency among nursing home residents has increased, along with median age, since 1960.
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54 l Technology and Aging in America Chronic conditions among the community-dwelling elderly The community dwelling elderly, who comprise 95 percent of Older Americans, have a much lower prevalence of severe limitations and dependency than the institutionalized older population. In 1981 the most commonly reported chronic conditions for this great majority of the older population were arthritis (46 percent), hypertension (37 percent), hearing impairments (28 percent), and heart conditions (28 percent) (27). Although more than 85 percent of the noninstitutionalized elderly reported one or more chronic conditions in various surveys over the past 20 years, fewer than half of those who had such conditions reported any degree of activity limitation because of them (25). Most older persons thus continue to be independent and active members of the community. Yet the extent of limitation among the elderly is notable when compared with other segments of the population, as shown in figure 12. Only 14 percent of the total noninstitutionalized population in 1981 reported some form of activity limitation (4 percent were limited in a major activity such as work). Among those 45 to 64, the total proportion whose activities were limited by chronic conditions was 24 percent. Both the prevalence and the severity of chronic conditions and their associated disabilities increase in old age. Fewer than one-third of those who are limited Photo credit: Suzanne L. Murphy The great majority of older Americans are active and contributing members in their community. Figure 12.Limitation of Activity Due to Chronic Conditions, by Degree of Limitation and Selected 60 50 40 3 0 20 10 0 Age Groups, 1981 Unable to carry major activity Limited in amount or kind of activity 53% Limited, but not in major activity 470/~ 140% 4 240% n 7 All 65+ <25 25456575+ ages 44 64 74 SOURCE: U.S. Senate, Special Committee on Aging, Developments in Aging 1983, based on National Center for Health Statistics, 1981 Health Interview Survey, unpublished. in the 45 to 64 age category are unable to carry on a major activity, but among those over 65, the proportion rises to almost two-fifths; among those over 75 the proportion exceeds two-fifths (see fig. 12). Beyond age 85, some 60 percent of the community-dwelling elderly report activity limitation from a chronic condition and more than one-half of these persons are unable to carry on a major activity. The severity of physical and mental limitations from chronic conditions is thus a critical problemfor the elderly in general and the very old in particular. The sharp increase in prevalence of dysfunctions among the very old is especially noticeable for osteoarthritis, heart conditions, hearing and vision impairments, and urinary incontinence. Technological applications that can eliminate or mitigate the incidence of either
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Ch. 2introduction: Technological Change and the Older U.S. Population 55 the underlying chronic conditions or the limitations they present would yield major improve ments in preserving the independence of older persons and their ability to function in the workplace, at home, and in the community. Assistance for the functionally impaired who need help is provided by formal services, informal care from family and friends, or technologies in the home. Chapters 7 and 9 provide detailed reviews of these subjects, which are briefly discussed in the following section. Socioeconomic characteristics and sources of assistance Coinciding with the growth of the old-old and very old segments of the elderly population is the growth in numbers of older Americans who live alone. This trend is almost entirely attributable to the increase in the number of very old surviving women. In 1982 one-half of all older women were widowed, compared with only 12 percent of all older men. These proportions rise significantly among those over 75to 69 percent for women and 22 percent for men (see ch. 9). Conversely, among all women over 75, only 22 percent were married and living with their spouse in 1982; for men, the corresponding figure was 70 percent. A consequence of these differences is that women over 75 are far more likely to be living alone than men percent of women as opposed to 19 percent of men. These differences in marital status and living arrangements, coupled with older womens greater life expectancy, mean that very old women are far more likely to live alone and, therefore, are less likely to have informal assistance from a spouse or other person in the home. By 1995 more than 55 percent of all elderly households are expected to consist of persons living alone or with nonrelatives; four-fifths of this population will be older women. These trends indicate that the elderly are likely to require a greater variety of housing types and living environments than exist today. Higher proportions of single-person households, especially among the very old, are likely to increase the demand for congregate types of housing, residentialcare complexes, and life-care communities. The functional status of the growing older population and their need for assistance will influence this demand for more supportive types of living arrangements. The ability of some elderly subgroups to pay for such environments and support services may be limited by low incomes. This is particularly relevant for the short-term future as increasing proportions of the elderly reach the oldest ages with little more than Social Security for their monthly incomes. older women are clearly at greatest risk of poverty. Low rates of labor force participation among women 45 to 64 in previous decades, compounded by low average income levels of those women who were in the labor force, indicate that greater numbers of old-old and very old women are likely to have incomes below the Federal poverty level for the next two decades. In 1982, 14,6 percent of all older persons were living below the poverty level. Twice as many older women who lived alone (28.7 percent) were in this category. Black women are especially vulnerable in this regard. Almost one-half of all black women over 72 had incomes below the poverty level, a rate five times that of their white male counterparts. 25 Almost 70 percent of black women who live alone have incomes below the poverty level (28). These differences are expected to persist for the remainder of this century. Certain older Americans in fact face quadruple jeopardy in terms of higher risks of chronic disease, functional impairment, poverty, and living alonethose who are: 1) very old, 2) women, 3) widowed, and 4) black. Thus, the burdens of old age are far greater among the very old, especially among women and minorities. Although these elderly individuals are most likely to suffer impairments from chronic conditions, they are least likely to have informal supports or the resources to pay for formal care at home, And very old women who are widowed are a growing propor25 Older women in general have Social Security retirement incomes that are considerably lower than those of older men. Womens tradi tionally lower wages provide a much lower earnings base for calculation of Social Security retirement income benefits. Very old black persons, particular} women, are highly likely to receive only the minimum benefits.
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56 Technology and Aging in America tion of the older population. If these trends con= tinue, during the rest of this century a growing proportion of the older population in need of care is likely to rely on publicly subsidized sources of assistance, whether in long-term care institutions or in their own homes and the corn= munity. The following chapters review the range of agerelated issues that can be addressed by various types of technologies. Cost+effective technologies that improve the health and functional status of the elderly may help reduce the anticipated increases in per capita public and private health expenditures. Delaying the onset of major chronic diseases and improving their treatment or prevention will greatly enhance the functional independence of the elderly, making their lives more productive and meaningful. Technological adapChapter 2 references 1. Burch, P., What Limits the Life Span? Population and the New Biology, B. Benjamin, P. Cox, and J. Perl (eds.) (New York: Academic Press, 1974), pp. 31-56. 2. Butler, R., A Generation at Risk, Across the Board 37-45, July/August 1983. 3. Cutler, R., Life-Span Extension, Aging: Biology and Behavior, J. McGaugh and S. Kiesler (eds.) (New York: Academic Press, 1981). 4. Feinleib, M. Changes in Life Expectancy since 1900, Circulation, Supplement 111, 52:16-17, 1972. 5. Fingerhut, L,, Changes in Mortality Among the Elderly, United States, 1940-1978, Vital and Health Statistics, National Center for Health Statistics, Series 3, No. 22, DHHS publication No. (PHS) 8921406 (Washington, DC: U.S. Government Printing Office, March 1982). 6. Fries, J., The Compression of Morbidity, Milbank Memorial Fund Quarterly 61(3):397-419, summer 1983. 7. Fries, J., Aging, Natural Death, and the Compression of Morbidity, hr. Engl. J. Med. 303(3):130-135, July 1980. 8. Galbraith, J., The New Industrial State, 3rd. ed. (New York: New American Library, 1979). 9. Gruenberg, E., The Failures of Success, Milbank Memorial Fund Quarter& 55(1):3-24, winter 1977. tations of the living environment can assist older persons in adjusting to environmental demands, thereby promoting their independence and safety in the home and in the community. Longer years of life and new technologies for the workplace could provide opportunities for some older persons to fulfill their desires for a longer worklife or for second and third careers. Others may choose to expand their leisure and recreational activities in retirement. In combination, these technological changes can enhance the well-being of older persons and maximize their ability to remain independent and active members of society. The U.S. Congress and Federal Government could directly and indirectly assist in this effort. The issues and options at the end of each ensuing chapter set forth some of the considerations for congressional review. 10. Hay flick, L., The Limited In Vitro Lifetime of 11 12 13. Human Diploid Cell Strains, Experimental Cell Research 37:614-636, 1965. Kramer, M., The Rising Pandemic of Mental Disorders and Associated Chronic Diseases and Disabilities, Acta Psychiatric Scandinavia, vol. 62, Supplement 285:382-397, 1980. Leaf, A., Long-Lived Populations: Extreme Old Age, J. Am. Geriat. Soc. 30(8):485-487, 1982. Manton, K., Changing Concepts of Morbidity and Mortality in the Elderly Population, Milbank Memorial Fund Quarter@ 60(2):183-244, spring 1982. 14. Rose, M., The Evolutionary Route to Methuselah) New Scientist 103(1414):15-18, July 26, 1984. 15. Rosenwaike, I., Yaffe, N., and Sagi, P,, The Recent Decline in Mortality of the Extreme Aged: An Analysis of Statistical Data, Am. J. Pub. Hlth. 70(10): 1074-1080, October 1980. 16. Satariano, W., Albert, S., and Belle, S., Race, Age and Cancer Incidence: A Test of Double Jeopardy) J. Gerontol. 37(6):642-647, November 1982. 17. Schneider, E., and Brody, J., Aging, Natural Death, and the Compression of Morbidity: Another View, N. Eng). J. Med. 309(14):854-856, October 1983. 18. Shanas, E., Self-Assessment of Physical Function: White and Black Elderly in the United States, Sec-
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Ch. 2Introduction: Technological Change and the Older U.S. Population l 5 7 ond Conference on the Epidemiology of Aging, S, Hayes and M. Feinleib (eds. ) (Bethesda, MD : National Institutes of Health, publication No, 80-969, July 1980), PP. 269-285. 19. Siegel, J., Review of Official National Demographic Projections, report prepared for the Office of Technology Assessment, contract No. 333-8300, October 1983. 20. Siegel, J., Recent and Prospective Demographic Trends for the Elderly Population and Some Implications for Health Care, Second Conference on the Epidemiology of Aging, S. Haynes and M. Feinleib (eds. ) (Bethesda, MD: National Institutes of Health, publication No. 80-969, July 1980), pp. 289-315. 21. Strehler, B., Implications of Aging Research for society, Proceedings of the 58th Annual Meeting of the Federation of American Societies for Experimental Biology, 1974 34(1):5-8, 1975. 22. U.S, Congress, Office of Technology Assessment, Abstracts of Case Studies in the Health Technology Case Study Series (Washington, DC: U.S. Gov ernment Printing Office, November 1984). 23. U .S. Department of Health and Human Services, National Center for Health Statistics, Advance Report of Final Mortality Statistics, 1981, Monthy Vita/ Statistics Report 33:3 Supplement, DHHS publication No. (PHS) 84-1120 (Hyattsville, MD: Public Health Service, June 1984). 24. U.S. Department of Health and Human Services, National Center for Health Statistics, Annual Summary of Births, Deaths, Marriages, and Divorces: United States, 1982, Monthly Vital Statistics Report 31:13, DHHS publication No. (PHS) 83-1120 (Hyattsville, MD: Public Health Service, October 1983). 25. U.S. Department of Health and Human Services, National Center for Health Statistics, Current Estimates From the National Health Interview r Survey United States, 1981, Vital and Health Statistics, Series 10, No. 141, DHHS publication No. (PHS) 831569 (Washington, DC: U.S. Government Printing Office, October 1982). 26. U.S. Senate, Committee on Finance, Subcommittee on Savings, Pensions, and Investment policy, Trends in U.S. Life Expectancy, Hearing, 98th Cong., 1st sess., July 15, 1983 (Washington, DC: U.S. Government Printing Office, 1983). 27. U.S. Senate, Special Committee on Aging, Developments in Aging: 1983, Volume I, 98th Cong., 2d sess. (Washington, DC: U.S. Government Printing Office, February 1984), p. 45. 28. U.S. Senate, Special Committee on Aging, ibid., pp. 25-28. 29. U.S. Senate, Special Committee on Aging, (The Federal-State Effort in Long-Term Care for Older Americans: Nursing Homes and Alternatives Hearing 95th Cong., 1st sess., Aug. 30, 1978 (Washington, DC: U.S. Government Printing Office, 1978), 30. Walford, R., Maximum Life Span (New York:, W. W. Norton 1983). 31. Weissert, 1$., and Scanlon, W., (Determinants of Institutionalization of the Aged, Working Paper No. 1466-21 (Washington, DC: The Urban Institute, November 1982). 32. Weissert, W., Innovative Approaches to LongTerm Care and Their Evaluation, paper prepared for the Project HOPE and OTA Conference on the impact of Technology on Long-Term Care, February 1983.
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Chapter 3 Selected chronic Conditions, Technology, and Biomedical Research
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Contents Page Introduction . . . . . . . 61 Dementia: Social Problem Medical E and Federal Burden . . Causes and Prevalence . . Effects on Patients and Their Fami Clinical and Scientific Background Federal Roles Regarding Dementia Urinary Incontinece . . . Enigma, . . 63 . . 63 ies . 64 . . 64 . . 65 .. .,... 66 Definition, Prevalence, and Causes of Incontinence . . . . . 70 Treatment . . . . . ... 72 The Cost of Incontinence . . . 76 Conclusion . . . . . . . 77 Hearing Impairment in the Elderly . . 78 Prevalence . . . . . . . 78 Types and Causes of Hearing Loss Among the Elderly . . . . . 80 Impacts of Hearing Impairment ... . 82 Treatment of Hearing Impairment . . 82 The Service Delivery System. ... . . 86 Funding for Treatment of Hearing Impairments . . . . . . 87 Federal Government Programs for the Hearing Impaired Elderly . . . 88 Osteoarthritis . . . . . . . 89 Definitions and Prevalence . . . 90 What is osteoarthritis . . . . 90 Risk Factors . . . . . . . 91 Diagnosis . . . . . . . 91 Prevention of Disability and Treatment . 92 Quackery . . . . . . . 94 Social Factors ., . . . . . 94 Osteoporosis . . . . . . . 95 Introduction . . . . . . 95 Magnitude of the Clinical and Social Problem 95 Biology and Physiology . . . . 96 Page Diagnosis . . . . . . . 97 Treatment andPrevention . . . 97 Summary . . . . . ., . . 100 Policy for Basic Biomedical Research . . 100 Congressional Role in Supporting Research on Aging . . . . . 101 Reasons for Supporting Biomedical Research on Aging ,. .,.,., . . . 103 Resource Allocation: Who Decides What 105 Conclusion . . . . . . . 110 Congressional Issues and options Regarding Basic Biomedical Research . 110 Chapter 3 References . . . . . 111 Tables Table No. Page 5. Common Reversible Causes of Dementia 66 6. Types of Incontinence. . . . . 71 7. Treatments for Urinary Incontinence .,... 73 8. Causes of Conductive and Sensori-Neural Hearing Impairments . . . . 81 9. Treatments for Arthritis . . . . 92 Figures Figure No. Page Percent of Adults Aged 25 to 74 With Hearing Impairment, by Frequency of Tone in the United States, 1971 -75..... 79 14. Physiology of the Human Ear . . 80 15. Diagram of Knee Joint . . . . 91 16. National Health R&D, 1972 and 1982, as Related to Total R&D Cost and Total Health Cost . . . . 102 17. National Support for Health R&D by Source, 1972-83 . . . . . 103
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Chapter 3 Selected Chronic Conditions, Technology, and Biomedical Research Introduction Improved sanitation, health care, environmental protection, and greater affluence all contribute to extending the average length of human life. Technology is an essential element of each of the factors that improve health and extend life. Modern sanitation methods, for example, are based on scientific evidence of their potential effectiveness and the technological innovation that makes the transport and treatment of sewage affordable. New medical technologies that extend life include the use of drugs to successfully treat hypertension, thus reducing mortality from heart disease and stroke, and sophisticated devices, like computer-assisted X-ray machines, that permit more rapid and specific diagnosis. The second half of the 2~h century has seen a dramatic shift in the types of diseases afflicting people, especially in economically developed countries. The incidence of many infectious diseases has fallen sharply as sanitation has improved and vaccines have been developed; many of the remaining infectious diseases can be effectively treated with antibiotics. Death rates from diseases of the heart and blood vessels have also begun to change as a result of diet, personal habits, and improved health care. If trends contilme, several predictions can be made: l life expectancy will continue to rise, l diseases whose incidence rises with age will become more common, l environmental and dietary factors affecting health may become more important because individuals will live through longer periods of exposure and have longer to develop symptoms, and l new and unexpected medical syndromes may appear. Each of these factors may boost the number of people affected with chronic health conditions. Dementia, arthritis, deafness, poor vision, and other currently incurable ailments are likely to rise in importance as death rates from vascular disease decline and the prevalence of various cancers shifts (see app. A). There are four general strategies for dealing with chronic health conditions: l l l l treatment of acute episodes of illness arising from underlying chronic illness; long-term treatment or long-term care; prevention; or research to improve diagnosis, treatment, and prevention. Policies regarding each of these interventions, except routine medical care, are discussed elsewhere in this assessment. Medical care for acute episodes of chronic illness and other aspects of hospital and ambulatory health care are discussed only briefly in this report because they are covered in both OTA reports on Medicare and in reports by other Federal agencies. Certain aspects of medical care, however, are covered in chapter 8. Long-term care is discussed in chapter 7 and prevention in chapter 4. Questions regarding Federal policy on biomedical research on aging are addressed in the final section of this chapter. An important result of the rise of chronic disease is the likely increase in prevalence of conditions that lack both cures and means of prevention and that become more common with age, such as osteoarthritis and Alzheimer disease. The shift from infectious to cardiovascular to other chronic conditions has followed a path of progressively greater clinical ignorance: those disorders that are now becoming more common are those about which we know the least. We know far more about the cause of tuberculosis than 61
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62 l Technology and Aging in America about the causes of Alzheimer disease. The most common causes of death and disability among Americans over 65 are reviewed in chapters 1, 2, 7, and in appendix A, which covers morbidity and mortality. The conditions selected for special review by OTA staff and the advisory panel for this assessment were chosen on the basis of several criteria: l l l l l l the condition is chronic and persistent; easily readable and current summaries of the state of science and medicine regarding the condition are not readily available; the elderly population is specifically affected due to severity or prevalence; technology is relevant to correction of or compensation for the condition; the condition contributes to the demand for long-term care, in line with the emphasis of the current assessment; or Congress has recently demonstrated a special interest in the condition. The conditions identified by OTA staff and advisory panel members as most meriting discussion were dementia, urinary incontinence, hearing impairment, osteoporosis, and osteoarthritis, Visual impairments, diabetes mellitus, certain cancers, liver disease, and chronic lung disorders were also considered, but omitted due to limitations of space, which also dictated that the reviews be succinct and focused on policy. Dementia was selected because Alzheimer disease and other dementing illnesses will soon become overwhelming health problems unless means for prevention or treatment are found. These diseases are severe, affect an important aspect of human functionmental abilityand are the most common determinants of need for long-term care. There are as yet no reliable or specific means of accurately diagnosing dementing disorders, although improvements have been rapid in recent years. Further, these disorders are probably not single entities, but combinations of related but biologically distinct diseases that have not yet been scientifically differentiated. The policy options relating to Alzheimer disease and dementia thus relate to long-term care for demented patients (see ch. 7) and to biomedical research. Although the ultimate solutions to dementing illness must come from research, they are not likely to be achieved in the short term, and the problem of caring for demented patients for the final few years of life cannot be avoided in the near future. Urinary incontinence is a common problem. It is a symptom of many neurological, endocrine, vascular, and urological diseases that can now be treated with technologies ranging from absorbent pads to sophisticated mechanical devices. Because many of the relevant technologies are just coming to fruition, incontinence will be far more effectively treated in the future. Discussion of the problem of incontinence centers on the substantial delay in bringing technology to bear on the problem, and on possible drawbacks of present technologies. Improvements in this area could revolutionize nursing home care, and permit families to care for their incontinent dependents for longer periods before the patients become unmanageable. Even more important, great improvement can be made in individual patients lives. Hearing impairments affect 24 percent of those 65 to 74 and almost 40 percent of those over 75 in the United States. Many forms of hearing impairment can be improved by technological interventionhearing aids and other devices. But the adaptation of appropriate technology to specific hearing defects of patients, especially elderly patients, has had only limited success. The potential for improvement of functional hearing impairments is substantial if patients can be convinced of the value of correction and if industry can adapt to better serving patients needs. Technological innovation in this area promises to be rapid over the next decade. Federal policy issues include assurance of patient safety in public places (mandating alarms that can warn those with hearing impairments of danger), reimbursement policy for Medicare and Medicaid (which currently offer little support for those with hearing impairments), regulation of the hearingdevices industry, and sponsorship of training and research. Osteoarthritis, which affects 16 million to 20 million older Americans, is the largest single cause of disability among the elderly. Technological
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Ch. 3Selected Chronic Conditions, Technology, and Biomedical Research c 63 issues related to osteoarthritis include a relative lack of basic scientific knowledge about the biology of cartilage, a need for preventive strategies, the potential for reducing pain and suffering for a large proportion of patients, and the enormous expense of current therapies, particularly joint replacement surgery. Like dementia, osteoarthritis is in need of discoveries that could lead to effective prevention and cure. Osteoporosis is a disease process involving thinning of bones. Its most devastating consequences are fractures of the vertebrae and long bones, which are especially common in elderly women. Fractures of the hip often result in death. Current evidence suggests that osteoporotic fractures are amenable to prevention by such methods as increasing calcium intake or postmenopausal administration of estrogens, but the definitive preventive protocol has not been established because the various regimens used in routine practice have not yet been rigorously compared. Federal policy centers on the need for support of research to determine optimum prevention and treatment methods, basic biomedical research, and oversight of elevating the dietary standards for calcium (Recommended Dietary Allowances) to conform to the requirements of older women. In conjunction with this assessment, longer separate reports, with additional scientific and technical background, are being issued by OTA on the impacts of neuroscience, technologies for managing urinary incontinence, and the management of hearing impairments. This chapter summarizes OTA findings regarding each of the five selected chronic conditions, and discusses Federal policy with respect to biomedical research on aging. Dementia: social problem, medical enigma, and Federal burden Dementia is one of the most important disorders leading to chronic disability among older Americans. It affects fewer people than osteoarthritis, and is not a major direct cause of death like cancer or cardiovascular disease. In epidemiological studies, however, life expectancy is reduced by half among demented patients, making it the fourth or fifth highest cause of death among older people. Yet the effects of dementia are so devastating to the patient and his or her family, and its prevalence is increasing so rapidly, that one medical authority, Lewis Thomas, has called it the disease of the century. Causes and prevalence Dementia is a serious social problem, a difficult medical enigma, and a major Federal expense. The loss of intellectual and other higher functions that is referred to as dementia can be caused by many different diseases and environmental insults. The most common type of dementia is Alzheimer disease, which accounts for 50 to 7 S percent of all cases. Up to 20 percent of patients with dementia have a disease that is treatable, and proper treatment can improve mental function in many cases.1 Another 15 to 25 percent have dementia due to cardiovascular disease, stroke, or an accumulation of mini-strokes. Another common cause is inappropriate drug treatment for other illnesses; many drugs used to treat cardiovascular diseases, psychiatric diseases, and insomnia lead to poor mental function. Mental function often improves when the offending medication is withdrawn, and failure to distinguish drug-induced dementia from true irreversible dementia can resuh in unnecessary mental confusion and inappropriate care. A substantial, but unquantified, number of older people suffer from transient confusion that spontaneously Kommon treatable causes of dementia include drugs, depression, and some cardiovascular and endocrine ailments.
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64 Technology and Aging in America resolves or abates with medical treatment of another condition. Such acute confusional states pose a different set of medical problems than does chronic dementia; acute dementia is not explored further in this discussion. There are many causes of irreversible dementia, but the functioning of affected patients is generally similar regardless of cause; daily care techniques are thus also similar. Because stroke as a cause of dementia is, in general, treated as is stroke causing other symptoms, a scientific review of this type of dementia is not included here. In contrast, Alzheimer disease is the largest single cause of irreversible dementia, and little is known about its cause or means of prevention. Alzheimer disease, first described in 1906 by German physician Alois Alzheimer, leads to progressive loss of brain functions over a period of years. The cause is unknown and there is no effective standard medical treatment. Alzheimer disease affects between 1.2 million and 4 million Americans; its true prevalence cannot be accurately determined because of variations in regional and historical methods of diagnosis of dementing illnesses. The term Alzheimer disease, for example, was until recently restricted to those cases beginning before the arbitrary age of 65. Best estimates suggest that severe dementia affects approximately 2.5 percent of those over 65, and moderate and mild dementia probably afflicts another 2.5 to 10 percent. The disease becomes more common with age, affecting 20 to 30 percent of those over 80. More than half of all nursing home residents suffer from dementia. Effects on patients and their families The patient is usually aware of intellectual decline in the early stages of the illness. As the disease progresses, the patient loses touch with the outside world, first through loss of memory and intellectual functions, then through loss of personality and speech, and finally through loss of the ability to recognize even close relatives and spouses. The effect of dementia on family and friends is devastating. Families care for the vast majority of patients with dementia. For the most part, only those in the final stages of severe dementia are placed in nursing homes or other institutions of long-term care. Families and friends are estimated to attend to 80 percent of the long-term care needs of patients in the United States (see chs. 7 and 9). Beyond the financial and medical burdens imposed by those who develop this disease are the severe emotional strains faced by families and friends. The progressive intellectual deterioration of a close loved one is a tragic experience that can only be fully understood by those who have gone through the process; it has been described by one family member as a funeral that lasts for years. The arduous task of caring for patients with dementia is tellingly described in a book called The 36-Hour Day, Clinical and scientific background The clinical changes of Alzheimer disease are associated with physical and biochemical changes in the brain. Accumulations of abnormal proteins and other material are found in plaques in the cerebral cortex of the brain, as are accumulations of abnormal fiber-like proteins within nerve cells. Specific populations of nerve cells in the nucleus basalis of Meynert, near the base of the brain, die for unknown reasons. The death of these cells is postulated to be related to the clinical symptoms. Patients die with this disease, not of it. Patients with dementia have only half the usual life expectancy for a given age; not because it kills in and of itself, but because patients become susceptible to other diseases as a consequence of being unable to take care of themselves and because of immobility caused by the end stages of the disease. At present, its cause is unknown, and there are no means of prevention. The absence of effective medical intervention has diminished the incentives to physicians to provide accurate and welldocumented diagnosis; if the cause of illness does not affect treatment choices, there is less reason to identify it. Greater awareness of the fact that up to 20 percent of dementia is treatable could improve physician attention to accurate diagnosis of dementia. Growing public awareness
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7Ch. 3Se/ected Chronic Conditions, Technology, and Biomedical Research 65 of Alzheimer disease has drawn medical attention to the disorder, yet one of the most important reasons for accurate diagnosis is often overlookedfamilies of patients know that something is wrong, but do not know what. The specific diagnosis of organic brain disease is unwelcome, but may reduce the anxiety and guilt felt by patients families by identifying the problem as an organic brain disease rather than a problem of family or interpersonal dynamics. The widespread belief in dementia as a normal concomitant of aging has historically served to lessen physician interest in the disease. The problem of diagnosis has been further hampered by physicians who inaccurately ascribed dementia to atherosclerosis or other cardiovascular dysfunction. Diagnostic methods are now changing rapidly, and heightened awareness has led to a dramatic increase in specific diagnosis by physicians. Nevertheless, there is great uncertainty about the real prevalence of Alzheimer disease. Although there is a genetic form of the disease, which runs in families (much like such genetic diseases as Huntington disease), it is not yet certain how many cases of Alzheimer disease are of the familial type; estimates of the number of patients who have a genetic form vary from fewer than 10 percent to more than 60 percent. Determining the genetic basis of Alzheimer disease is an important objective for research, especially if a marker for the disorder could be found to aid in diagnosis in affected families. Various causes of the disease have been postulated, including unusual infectious agents ((slow viruses)) aluminum toxicity, reaction of the body against itself (autoimmune disorder), and various biochemical abnormalities. Many research leads are promising, but none are yet conclusive. Federal roles regarding dementia The basis of Federal concern about Alzheimer disease is not only in its prevention and treatment, but in payment for the care of patients. Because dementing illnesses account for admission of most nursing home residents, they are a major aspect of long-term care and institutionalization (see ch. 7). The Health Care Financing Administration has estimated that the Federal Government spends over $6 billion annually in nursing home costs alone for those affected with Alzheimer disease (approximately 30 percent of the total Federal outlay data). An additional $2 billion to $4 billion in Federal funds are spent each year on acute hospital, home, and rehabilitative care for these patients. Federal concern about Alzheimer disease is intensifying as its prevalence increases with the rapid growth of the oldest segments of the American population, The magnitude of health care costs, especially for long-term care, has focused new attention on the scientific and medical need to study this disease. Concern among physicians, researchers, and other health care professionals has led to rapid advances in the study of Alzheimer disease in the last decade. A significant factor has been the creation of the National Institute on Aging (NIA), which has made a major commitment to the study of dementia. In 1984, for example, NIA earmarked $3.S million to establish up to five centers of excellence for the study of Alzheimer disease in response to congressional appropriations, The National Institute of Neurological and Communicative Diseases and Stroke (NINCDS) and the National Institute of Mental Health (NIMH) have also increased research on dementia. Total Federal research funds on Alzheimer disease for 1984 are estimated at $36.4 million to $37.8 million, up from $3.8 million in 1976. Recent discoveries of specific nervewell loss, of the nature of the anatomic abnormalities, possible infectious agents, and of biochemical changes have all emerged from federally funded research during the last decade. Recent findings in neuroscience have led to experimental drug therapies directed at particular chemical nerve~ell connections in the brain. There has been preliminary success with drugs that allow the neurotransmitter acetylcholine to work longer at its anatomic site. The neuropeptide vasopressin has been shown to improve memory slightly in some patients with Alzheimer disease. The drug naloxone, which is used to treat some forms of acute opiate overdose, has also been reported effective in one small study, but following studies have not shown a significant effect. Tests have begun on drugs that might in-
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66 Technology and Aging in America crease the efficiency of releasing acetylcholine into its active site by altering calcium metabolism and other biochemical pathways. Federal policy regarding support of randomized clinical trials of various therapies will affect the pace at which effective drug treatments are identified and accepted by the medical community. Preliminary findings offer hope for at least a partially effective symptomatic treatment. Solving the problem of dementia may well depend on developing effective means of prevention, which will, in turn, depend on understanding its cause and the mechanisms of its progression. There is also a role for the Government inpwtecting those who have Alzheimer disease. For example, who is to decide when it is proper to conduct research on a demented patient? The patient is by definition not able to give informed consent, which requires understanding of the purpose and process of experimentation. Obtaining informed consent can be a barrier to scientific investigation of just those treatments that are so needed. The dual role of the Federal Government in both preserving civil rights and supporting most biomedical research suggests that informed consent for Alzheimer disease research maybe an emerging Federal issue. Treatment and prevention of this dread disease can only come from investment in neuroscience research (see table 5). The United States has a social, financial, and medical stake in the solution of this major health problem. The Federal Government already sponsors research, pays for acute care and diagnosis through Medicare, and is responsible for long-term care through Medicaid. Cost savings in health care for the rising population of demented patients depend on finding new, effective, and inexpensive treatments for dementia and determining methods of prevention for Alzheimer disease and other dementing illnesses. Table 5.Common Reversible Causes of Dementia Drugs: l Sleeping pills and sedatives l Other psychopharmaceuti cals l Anti-Parkinsons drugs l Other neurological drugs l Anti-hypertensive drugs l Other cardiovascular drugs l Opiate analgesics c Many others D@#VWSiOfl and psychosis /nfectlons: l Cold s l Fl u l Lung (pneumonia) l Brai n l Brain membranes l Bloo d l Kidney l Digestive tract c Many others Stroke (often at least ~arfia//y reversible): l Blood clots in or around the brain l Occlusion of blood vessels feeding the brain Heart failure Disorders of endocrine function: l Thyroid hormone l Parathyroid hormone l Hormones and substances affecting blood volume control l Stress-related hormones l Others Nutritional disorders: l Vitamin BI~ deficiency l Folate deficiency l Protein deficiency Anemia Metaboiic and eiectrviytic imbalances: l Calciu m l Sodiu m l Potassium l Others Trauma: l Head injury l Shock Toxicity: Occupational exposure Environmental exposure (lead, carbon monoxide) l Household exposure (pesticides) SOURCE: Office of Technology Assessment. Urinary incontinence Urinary incontinence is detrimental to the physrupts the lives of 5 million to 10 million Ameriical health, psychological well-being, and social cans, their families, friends, and caregivers and functioning of those afflicted. This condition dis is most common among those over age 65. Incon-
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Ch. 3Selected Chronic Conditions, Technology, and Biomedical Research l 6 7 l l l l l l l Alzheimer disease affects 5 to 15 percent recent events. Difficulties in speech and those over 65 (1.2 million to 4 million Amer. word-finding; loss of the ability to "think icans). through complex interpret com plex stimuli soon follow. The first signs Alzheinwr disease is common with ad.: vancing age, affecting more than 20 percent noted can however, vary greatly among pa.. a of those over age 60. tients. &~ 2. This is followed by worsening cognitive Alzheimet disease imposes severe financial medical, and emotional stresses on families: deterioration and personality changes, often A full diagnostic evaluation cost $300 to $2,000. tation as to time and place. The patients Families bear fractions of diagnostic speech often remains fluent and grammattherapeutic costs, and almost half of the ical -; but the content of what is said is often overall cost of king-term care directly out-. inappropriate or eisconected from realit y of-pocket. patient shows complete loss o f Families suffer loss of a abilities, leading to a state o f ~~, r : often leading to sudden and substantial vegetation. This includes the inability to duction in income, speak or Recognize even close relatives, and Alzheimer disease complete loss of world knowledge. accounts for an estimated 30 to 50 percent of those in nursing homas. .:. It is highly probable that what is now called Alzheimer disease is the most frequen~ ca@ .. disease or senile dementia of th e of institutionalization for long#.4mn @re. ~ type isagroupofseveral distinct disFederal funds fw kmg-tem WUX? kI 1~ #4p different causes and mechanisms $12 billion ($lo.xbmon from Medicaid, $@# ~ : is trem@dous variation in the duration billion from Medicare, and $1.1 billion from : its mte of progression. Younger the Veterans Administration). The@ c@% ~@hts tend to have more severe cases which under present arrangements, wilI escalate to more rapidly. Alzheimer disease can $24 bmon by 1935, and $43_ by 19%% ~ km a few years to a few decades. Alzheimer disease accounts for 30 to 50 nw ,, functions over a period of years. Its clinical procific regions of the brain, and are rare-in gression is uswdly divided into three stages: other diseaseIs. 1. Mild cognitive deterioration is quite ~ None of the pathologic changes is unique to to distinguish from normal funatkm, and is Al#@ner disease. The pathologic diagnosis is
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68 Technology and Aging in America
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Ch. 3Selected Chronic Conditions, Technology, and Biomedical Research l 6 9 to Other diseases such M Syst@ti hlpllt! W, but the eff~ is so minor that it may not erythematoms or myasthenia grwis. ix? Gi@ical(y rekwmt. A biochemical abermtion of ctdoium nmtabo. lism may kacl to insuffkient release of neurw -~rn~~-~develap~ent~ fn transmitter. tit? ~ run? There may be a &order of glycolytic Mow ~ j ,l@earch may yield a specific diagnostic test c heroical @.hWZyS (pyruvate dehydrogenasd .f@ Alzheimer disease. Such a test could deleading to decreased cakium influx into the X from biochemical tests on tissue from cell and insufficient x@ease of neurotrmsbmiin biopsies, chemical metabolizes in ceremitter. b?twpinal fluid, or monwlonal anti~dies to Disorders of neurotransmitttws other than ~@s that are possibly specific to Alzheiacetyicholine maybe involved as well, Those %q#r diiwme. suggested include: ;@ vw of nerve-cell impiants (scwdled brainadl somatostatin, tmnsplants) is promising, but many technical norepinephrhe (from the locus Cerulew), ~bstacles remain. The treatment has worked vasopredn, and fnanimakl with a disease resembling Parkin_eROUS OPi@i peptides. TM last is ~. WJ%%% disease, and human grafts have grown ported by clinical reports of improvement swxmsfully in experiments conducted in by treatment with nakxcme, a chemical $aandinavia. The human experiments have blocker of opiate receptors. w yet been clinically useful, and many prob~ regarding what tissue to use as a source What potentiaf thmaptea are under inofimdantabb nerve cxdk? must be solved. Sucveatigation? ~ WM&II implant therapy for Alzheimerdisease l l l l l l l l l Infuse drugs that simulate the actions of ace%!@o awai~ knowledge of the nerve cds that tylcholine directly into the fluid surroun ding *d to be replaced. the brain. Four patients, in a recent trial, re~ l ~~erm of the bi~he~~ and ne~. ceived such drugs from a pump implanted in transmitter defects may allow specifically tarthe patient% body and families reported hug geted therapy, based on the physiology of me provement or stabilization of symptoms. dfected parts of the brain. One promising aveStimulate acetykholine synthesis (lecithin, nu~ to learning about this is through develchoiine)-not very successful to date. opment of animal models based on finding Administer piratwtam, a drug which improves Qh#micals that specifhdly destroy certain some aspects of mental function, alone or in of the brain or particular types of nerve combination with other drugs. C+#@@. Use drugs that mimic the effect of acetyi@ ~~r~ding a muse or causes (whether choline, either alone or in combination. viruses, other infectious agents, or environStimulate acetylcholine release with 4-aminoIh@mtd toxins) may permit effective prepyridine and related agents. wmtion. Increase the duration of action of acetykho* klentifkation of genet.io markers, anaiogous Iine by inhibiting breakdown by anticholine@Mlmseknawn for sickie celi disease or Hunsterase drug therapy. The best example is ~~ &_, WOUM prove useful for mphysostigmine. wwtigating the putative molecular defect, as Chelate aluminum to prevent toxicity W@ wdi as helping in diagnosis of members of fluoride, tetracycline, or deferoxamine. j: ,, ..:~families for family and personal Use nakxone to block opiate receptors. $ J: ~ use vasopressin to improve memory. : ~ f~ ., --w ~, maybe possible, based on Breathe hyperbaric oxygen (not very #t#!: ~, :.3+ .% genes in other species (e.g., Cessful). speUse ergoloid mesylates (HYdergine+mly mar *of ~m genes, if any, that predisginally effective, used widely in Europe). ~ P E may also be possible to if them treatments, those af&cthga&khodeliberately engineer netie celh @th needed line have shown moderate, but Wxmsistent imcharacteristics to replace or supplement cells provmnent, Ergoioid mesylates administration that have died. has been shown to have an efiect in numerous
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. 70 Technology and Aging in America tinence also constitutes a costly health problem: the U.S. Surgeon General estimates that $8 billion is spent on incontinence in this country each year (37). Because it is often difficult for affected individuals and their families to cope with the condition at home, incontinence may play a pivotal role in the decision to enter a long-term care facility. Despite the availability of many effective forms of treatment, incontinent persons are rarely evaluated thoroughly enough to determine the precise causes of the condition and are therefore not treated optimally. Some estimate that up to one-third of incontinent patients could be completely cured (38,73). Several factors contribute to the deficiency in care of incontinent persons in this country, including: 1) lack of knowledge about the specific diagnosis and optimal treatments for different types of urinary incontinence; 2) reluctance of affected individuals to seek medical help because of embarrassment, social stigma, and the misconception that it cannot be treated (largely because of lack of awareness of available treatments); and 3) scant, inconsistent Federal and State reimbursement policies for urinary incontinence treatment and products, especially for the noninstitutionalized. This section briefly explores these barriers to adequate medical care for incontinent persons, looks at the technologies available for treatment, and proposes some ways in which the government might act to reduce the magnitude of the medical, social, and economic impact of urinary incontinence in this country. Definition, prevalence, and causes of incontinence Urinary incontinence is defined as an involuntary loss of urine sufficient in quantity and frequency to be a social or health problem. The severity ranges from occasional dribbling to total loss of control over excretion of both urine and stool (fecal incontinence is much less common and is not discussed in detail here). Between 10 and 20 percent (2 million to 4 million) 2 of communitydwelling elderly have some degree of incontinence. The prevalence increases to between 40 and 50 percent of those elderly in nursing homes (600,000 to 700,000). In comparison, between 1 and 5 percent of those under age 65 (2 million to 10 million) have a persistent problem with incontinence. Data subdivided by severity for communitydwelling elderly persons are scarce but British studies suggest that 5 percent are severely affected (one or more episodes daily) and 9 percent are less severely affected (68). More than twothirds of affected individuals (or over one-third of the total patient population) in nursing homes have more than one episode a day (59). Although incontinence of both urine and stool is relatively uncommon in community dwelling persons, close to 50 percent of those in nursing homes who are incontinent of urine also have episodes of fecal incontinence (46,59). Most patients with both kinds of incontinence also have severe impairments of mental and/or physical functioning. Disorders of the lower genitourinary tract, disorders of innervation and neurological control over genitourinary function, lack of mental awareness of the need to void, and limitations in mobility or environmental factors (e.g., restraints or drugs) Can all contribute to the development and persistence of incontinence. The many types of urinary incontinence can be divided into two general categories, acute and persistent (see table 6), for which the causes and the clinical approaches are distinct. Acute incontinence refers to the sudden onset of episodes of involuntary urine loss that are usually associated with an acute illness, or environmental factors that impair the mental or physical ability to reach a toilet or toilet substitute. Especially common in hospitalized elderly, acute incontinence can be precipitated by impairment of mobility (as with hip fracture) or some type of bed restraints; such patients may recognize the need to void but may not be able to obtain timely help in getting to the toilet. other causes of acute incontinence include: acute urinary tract infections with bladder inflammation; metabolic disAccurate, consistent prevalence data for urinary incontinence are scarce, especially for community dwelling persons, because of underreporting due to social stigma, reluctance to seek medical help, and lack of diagnosis. The figures given here are therefore rough and probably underestimates.
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Ch. 3Selected Chronic Conditions, Technology, and Biomedical Research l 71 Table 6.Types of Incontinence Definition Causes Population(s) affected Acute: Incontinence of sudden onset Acute illnesses associated with one or more of the Elderly, usually in acute associated with an acute following: (a) immobility and/or environmental factors that hospitals. illness (and/or other factors) diminish the ability to get to and use a toilet, (b) that subsides once the acute impaired mental function that diminishes toileting condition has been resolved ability, (c) fecal impaction. or other factors have been Acute urinary tract infections. removed, Drugs: (a) those that increase urine flow (e.g., diuretics), (b) those that inhibit bladder contractions and cause urinary retention and overflow (e.g., anticholinergics), (c) those that decrease mental awareness (e.g., sedatives, hypnotics). Metabolicincreased urine flow (polyuria) associated with poorly controlled diabetes. Established: a Stress: Leakage of small amounts of Weakened supporting tissue surrounding bladder outlet Women, especially urine with increases of intraand urethra associated with: (a) lack of estrogen in those over age 40. abdominal pressure (e.g., postmenopausal women, (b) previous vaginal coughing, sneezing, laughing, deliveries, (c) previous pelvic surgery (e.g., exercise). hysterectomy). Urge: Leakage of urine caused by Neurological disease such as stroke, dementia, Men and women of any inability to delay voiding long Parkinsonism, muliple sclerosis, spinal cord diseases. age; most common enough to reach the toilet Genitourinary disorders such as unstable bladder in the elderly. after urge to void is felt. (detrusor instability), bladder stones, diverticuli of urethra and bladder, atophic urethritis, vaginitis (females), chronic cystitis, mild outflow obstruction (usually males). Overflow: Leakage of small amounts of Hypotonic or acontractile bladder associated diabetic Older men with urine associated with neuropathy, spinal cord injury, or drugs such as prostatic obstruction to urine flow. anticholinergics (which inhibit bladder contractions), enlargement. smooth muscle relaxants, narcotics, and alcohol. Diabetes. Anatomic obstruction associated with prostatic enlargement or urethral stricture. Functional: Inability or unwillingness to Impaired mobility. Elderly in acute reach a toilet in time. Impaired mental function. hospitals and Inaccessible toilets (or caregivers). nursing homes and Psychological disorders such as depression, psychosis, those with acute or anger or hostility. severe psychiatric illness. a Incontinence is persistent and unrelated to an acute illness. SOURCE: J Ouslander, R. Kane, S. Vollmer, and M Meneres, Medical Devices for Urinary Incontinence: A Case Study, prepared for the Office of Technology Assessment, contract No. 333-6550, December 1983. orders that increase urine flow, such as diabetes; fecal impaction that may mechanically obstruct normal bladder emptying or cause reflexive involuntary bladder contraction; and a variety of drugs. Drugs that can induce urinary incontinence include: diuretics that increase urine flow; sedative, hypnotic, and antipsychotic drugs that may diminish mental awareness of the need to void; and drugs that influence lower urinary tract functioning, such as anticholinergic drugs (that inhibit the bladder from contracting) and certain antihypertensive drugs (that decrease resistance in the bladder outlet) (36,64). Persistent or established incontinence (i.e., repeated episodes not associated with an acute condition) can be divided into four types: 1. Stress incontinence usually occurs in women, especially those whose musculature has been weakened by multiple vaginal deliveries or
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72 l Technology and Aging in America pelvic surgery. It involves the leakage of small amounts of urine with increased abdominal pressure such as that associated with exercise, straining, coughing, laughing, or sneezing. 2. Urge incontinence involves leakage of varying amounts of urine because of inability to delay voiding before reaching a toilet. It can be, but is not always, caused by a variety of genitourinary and neurological disorders such as involuntary bladder contractions, or local irritation of the bladder or the urethra. 3, Overflow incontinence involves leakage of small amounts of urine and is caused by anatomic obstruction to bladder emptying (as by an enlarged prostate in men) and/or impaired ability of the bladder to contract (as with diabetes, spinal-cord injuries, and certain drugs). 4. Functional incontinence occurs in those individuals who have chronic impairments of either mobility or mental function, are unable to use a toilet independently, or are unable to maintain continence because of psychological disturbances. This type of incontinence may also be induced by iatrogenic factors such as medication or environmental barriers (e.g., restraints). Treatment Determining the appropriate treatment for an individual with urinary incontinence requires a thorough evaluation of all relevant factors genitourinary, neurological, psychological, and environmentalthat could be causing or contributing to the condition. Unfortunately, health professionals commonly do not recognize incontinence, especially among community dwelling older persons, or fail to note it as a problem and therefore do not pursue an evaluation (59). The problem is compounded by the reluctance of many afflicted individuals who are too embarrassed to seek medical help or believe that nothing can be done about it. Fewer than 5 percent of incontinent patients in a nursing home setting are estimated to have had any specific evaluation of their incontinence (59). Many could benefit from such an evaluation because it could lead to a cure or to treatment that significantly ameliorates their incontinence. Some experts estimate that one-third of incontinent patients can be completely cured and most others could be kept comfortable and dry with appropriate management technologies (38,73). Unfortunately, there have been very few studies on the relative efficacy of various treatments for different types of incontinence. Only a handful deal specifically with the elderly and most report on fewer than 10 patients (72). When treated inadequately or inappropriately, incontinence can lead to skin breakdown and recurrent urinary infections. In addition, inadequate treatment can exacerbate the incontinence and thus increase the psychosocial impact, leading to further loss of self-asteem and withdrawal from social activities that may exacerbate isolation and depression. Studies in Great Britain indicate that incontinent individuals often are reluctant to utilize services available to them such as incontinence nurses, incontinence clinics, and laundry services (e.g., 67,68,74,75). Many technologies are specific to a particular type or types of incontinence and attempt to cure the problem (e.g., artificial sphincters, electric stimulators, drugs, training procedures, and surgery). Diagnostic evaluation is thus critical to the appropriate use of these treatments. other treatment technologies are nonspecific and palliative rather than curative (bed pads, undergarments and, in some situations, catheters). In general, these technologies should be used as a last resort after diagnostic evaluation has excluded treatable conditions. The various types of technologies for the treatment of urinary incontinence, along with their mechanisms of function and appropriate uses, are described in table 7. In order to discuss their advantages and disadvantages, these technologies are divided into four categories in the discussion that follows: devices, surgery, drug treatment, and training procedures. Again, little is known about the relative efficacy and long-term cost effestiveness of the various treatments for urinary incontinence.
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Ch. 3Selected Chronic Conditions, Technology, and Biomedical Research 73 Table 7.Treatments for Urinary Incontinence Examples Mechanism Uses Devices: To collect urine before leakage occurs: Catheters A flexible tube is placed directly in the bladder and Inability to empty bladder (urinary drains urine into a collecting bag. Can be used retention) that cannot be corrected by continually or intermittently. surgical or drug treatment. (This may or may not be associated with overflow incontinence.) Incontinence associated with healing skin lesions. To collect urine after leakage occurs: NASA (female) Outflow is trapped and drained into a collecting Any type of incontinence. Condom catheters bag. (male) Bed pads Pad protects individual and mattress from contract Any type of incontinence especially, with urine. These pads are disposable or reusable. useful as adjunctive therapy with other treatments. Prevent or delay urine outflow: Artificial sphincters Inflatable cuff Silicone-Gel prosthesis Periurethral Teflon Electrical stimulators External clamp (male) Pessary (female) Other treatments: Surgical procedures: Bladder-neck suspension Prostatectomy (transurethral resection and suprepubic) Therapeutic bladderneck transection Selective bladder denervation (cystolysis) Therapeutic bladder distension Correction of other genitourinary pathology (e.g., bladder tumor or stone). Inflatable cuff is surgically implanted around urethra and inflated to prevent urine outflow. Silicone-gel is inserted to replace existing urethra. Teflon paste is injected into tissues surrounding urethra. Device inserted into vagina; produces electric impulses that (a) cause contraction of pelvic floor musculature (b) inhibit bladder contractions. Penis is clamped to prevent urine flow. Device is inserted into vagina, supporting tissues below bladder and around urethra. Incontinence associated with sphincter weakness (usually stress incontinence or postprostatectomy) Incontinence associated with pelvic floor muscle weakness or bladder instability. All types of male incontinence. Female incontinence associated with prolapsed pelvic structures (usually stress incontinence). Urethra and bladder neck are restored to a more Female stress incontinence. normal intra-abdominal position. All obstructing portion of prostate is removed. Male overflow incontinence associated with anatomic obstruction. Bladder neck is surgically incised. Nerves to upper bladder are cut so that there is no muscle control of bladder dome, but sphincter mechanism is intact. Bladder is distended under anesthesia for at least two hours to a pressure close to systolic blood pressure. Removal of irritative or obstructive factors. Urge incontinence associated with bladder instability. Urge incontinence associated with bladder instability. Urge incontinence. Urge incontinence associated with bladder instability. Overflow incontinence associated with outflow obstruction. Drugs: Propantheline Diminish bladder contractions. Urge incontinence associated with (Probanthine) bladder instability. Imipramine (Tofranil) Oxybutrin (Ditropan) Flavoxate (Urispas) Ephedrine (Sudafed) Strengthen bladder outlet Stress incontinence associated with sphincter weakness.
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74 Technology and Aging in America Table 7.Treatments for Urinary Incontinencecontinued Examples Mechanism Uses Phenypropronolamine (Ornade) Estrogen (Premarin) Increases supporting tissue around urethra. Stress incontinence. Oral or topical Bethanechol Promotes bladder contraction. Overflow incontinence. Urecholine) Training procedures: Habit training Bladder retraining Pelvic floor exercises Biofeedback Behavioral modification Caretaker determines individuals pattern of incontinence and gets him/her to toilet according y. Caretaker establishes routine of fluid administration and toileting with progressive lengthening of toileting intervals to increase bladder capacity or re-initiate normal voiding. Exercises to strengthen pelvic muscles. With specialized equipment, patient is trained to inhibit bladder contractions or contract pelvic muscles. Caretaker rewards incontinent individual for staying dry. Urge. incontinence. Functional incontinence. Urge incontinence. After catheter use. Overflow incontinence after overdistension injury. Stress incontinence. Mainly urge incontinence associated with bladder instability and stress incontinence associated with sphincter weakness. Incontinence associated with underlying mental or emotional disorders; some forms of functional incontinence. SOURCE: J. Ouslander, R. Kane, S. Vollmer, and M. Medical, Medical Devices for Urinary Incontinence: A Case Study, prepared for the Office of Technology Assessment, contract No. 333-6550, December 1983. DEVICES Four major types of devices are currently in use: bedpads and undergarments, catheters, electrical stimulation, and artificial sphincters. Bedpads and undergarments range from those that are completely disposable to those with launderable components. Most acute care hospitals and long-term care institutions use blue pads for managing incontinence despite their relatively low absorbency and lack of odor control. More innovative forms, like the Kylie @ pad that is launderable and draws moisture away from the body, have been marketed widely in the United States only recently. The efficacy of these products in diminishing complications of incontinence such as skin irritation and urinary tract infection has not yet been carefully assessed. The three types of catheters commonly used are chronic indwelling catheters, intermittent bladder catheterization, and, for men, external catheters. A chronic indwelling catheter is placed in the bladder and attached to plastic tubing that drains urine into an externally worn collection bag, This type of catheter can induce serious complications, however; urinary tract infection is the most common. It should only be used in patients with urinary retention that cannot be treated surgically, pharmacologically, or by intermittent catheterization, and for patients with skin conditions that are worsened by contact with urine. There is evidence that indwelling catheters are overused in managing urinary incontinence, especially in elderly patients in long-term care facilities (10 to 30 percent of incontinent cases), probably because of the relatively low cost and convenience for the staff (50,53,57,61)69). Intermittent self-catheterization has a lower incidence of infection and other complications in younger patients (51), although its relative efficacy in the elderly has not been studied; this method also requires training on the part of the caregiver and/or patient. External (condom) catheters, used exclusively in men, may reduce infection but require frequent changing, often fall off, and may result in local skin irritation. The National Aeronautics and Space Administration (NASA) has also developed an external female urine-collection device for use of women
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Ch. 3Selected Chronic Conditions, Technology, and Biomedical Research l 75 astronauts. This and a similar adhesive device developed by private industry are still in the developmental stage for application to older women in the general population; both have already received approval by the Food and Drug Administration (FDA). The adhesive device has been marketed on a limited basis; the NASA product is scheduled for release onto the retail market in November 1984 under a nonexclusive licensing agreement with a small manufacturing company headed by the inventor of the device. Electrical stimulation involves an external device that intermittently stimulates musculature associated with voiding to induce muscle contraction and maintain continence. This technique is most useful for incontinence due to stress and bladder instability (40,41)42)43), Between 50 and 80 percent of individuals treated in this way derive some short-term benefit from the treatment. The long-term effects of chronic electrical stimulation are unknown, however, and the patient must be willing and able to manage the device. While artificial sphincters appear to improve or cure incontinence in 40 to 80 percent of patients treated (relatively few patients receive such implantations), there are several associated complications. The most common problems are erosion of the sphincter cuff into the urethra, persistent infection, and mechanical failure. Favorable results have been obtained with prostheses consisting of injections of silicone gel or Teflon, but there is again the risk of urethral erosion and Teflon particles have shown a tendency to migrate to other major body organs. SURGERY Surgery is an essential treatment for certain types of incontinence and is effective, but not essential, for other types. An anatomic obstruction to urine flow (e.g., an enlarged prostate in men), for example, can lead to recurrent infection and even renal failure, necessitating surgery to relieve the obstruction. Yet surgery may not cure the incontinence and may even induce a different type of incontinence. Pathologic conditions in the lower genitourinary tract that irritate the bladder or urethra (e.g., bladder tumors, bladder stones, and diverticuli of the urethra or bladder) and cause incontinence can also be treated surgically. The most common surgical procedure for incontinence is bladder-neck suspension in women in which the bladder neck and urethra are repositioned to relieve stress incontinence. The success rate is generally reported as 70 to 90 percent (54,62,63,65,66). There have been no conclusive studies on the efficacy of surgery relative to other treatments for stress incontinence. DRUG TREATMENT Although drugs can be used to treat overflow, stress, and urge incontinence (36,56)64), they may be inappropriate for the elderly or have undesirable side effects. For example, cholinergic drugs used to treat overflow incontinence that promote bladder contraction may actually worsen incontinence in the elderly by creating urinary frequency and urgency; in addition, some of these drugs may cause cramping, diarrhea, and increased bronchial secretions. Drugs used to treat stress incontinence that promote muscle contraction around the bladder outlet may exacerbate hypertension. The topical and oral estrogens that are used in elderly women to strengthen the tissues around the bladder outlet may also exacerbate hypertension and increase the risk of cancer of the uterine lining. The most common and effective drug treatment involves substances that reduce bladder contraction to treat urge incontinence. Most studies show these drugs to be effective in 50 percent of the patients. Many, however, can have undesirable side effects, including dry mouth, constipation, and blurred vision. Unfortunately, there have been few studies comparing the efficacy of these drugs with other methods. TRAINING PROCEDURES Training procedures are broadly defined here to include pelvic-floor exercises, biofeedback bladder retraining, habit training, and behavior modification. Many of these have been reported as successful in managing various types of incontinence (47)71). Patients must have adequate cognitive function to use the pelvic-floor exercises (strengthening associated muscles by repeated contraction), biofeedback bladder retraining (learning to control muscle contraction, requiring specialized equipment and personnel) or blad-
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76 Technology and Aging in America der retraining (learning progressively to extend periods between voiding). Habit training involves developing a toilet schedule and can be used with patients who have mental and physical impairments. Behavior modification is similiar to habit training but incorporates positive and negative reinforcers and is used mainly for bed-wetting children and chronically mentally ill patients (39,60). Most studies of the efficacy of training procedures have involved some type of bladder retraining or habit training for urge incontinence and have found S O to 80 percent of subjects cured or substantially improved (44,45,47,48,49,52). Again, there have been few studies of the relative efficacy of training compared with other treatments. The cost of incontinence The costs of incontinence go far beyond economic considerations. Withdrawal from social activities, psychological distress, burden on the family and caregivers, and the influence on the decision to institutionalize are all important potential effects of incontinence that are difficult to quantify (55). In one study of stress in caregivers of frail elderIy community dwelling persons, difficulties with toileting and incontinence were highly correlated with caregiver burden (55). Since the Federal Government plays an important role in assisting with medical costs, however, it is important to discuss the cost of incontinence and current Federal reimbursement policies. The variety of incontinence products are discussed in detail in a separate OTA case study, Technologies for Managing Urinary Incontinence. One of the reports major conclusions is that promotion of these products has been targeted largely toward physicians and other health care professionals rather than toward the consumer. As a result, incontinence products are not widely available at the retail level and public awareness of the variety of treatments available is scant, Two large paper-products firms have entered the market for disposable incontinence products, however, and have launched consumer-oiented advertising campaigns that may help destigmatize incontinence and lead to competitively low prices. Unfortunately, these promotional efforts, which emphasize management of incontinence through the use of undergarments, may lead consumers to believe that this is the most appropriate treatment. For other technologies such as catheters, electrical stimulators, and artificial sphincters, the delays and difficulties in obtaining FDA approvals could constitute a barrier to entry into the market for manufacturers. The case report points out that the Federal Government, as a disinterested party, could effectively promote consumer education about the importance of medical evaluation and the variety of treatments available. FINANCIAL COSTS The actual expense of incontinence management and the Federal role in providing financial assistance to care recipients is important since this can affect access to health care. Moreover, loss of productivity of both those afflicted and their caregivers can be substantial, It is important to note that, as has been mentioned, very few incontinent nursing home patients receive a specific evaluation of their condition. Although an extensive urologic evaluation for incontinence can be costly (about $600) and involve highly specialized personnel and equipment, it may save money overall by curing or mitigating the condition through more specific, effective treatment (58), and bring immeasurable improvement to the quality of life of both the patient and the caregiver. Research into the most practical and costeffective methods of diagnosing different types of incontinent patients is sorely needed. The U.S. Surgeon General has estimated that $8 billion is spent on incontinence in this country annually (37); the basis of this estimate has not been detailed, however. A recent report (58) divides estimates of the overall annual costs of incontinence in nursing homes in the united States into firstarder costs (i.e., the costs of managing incontinence without the costs of any complicating conditions) and seconderder costs (i.e., the costs associated with managing complications of incontinence and its treatment). If only first-order costs are considered, incontinence adds between $3 and $11 to the daily cost of caring for a nursing home patient. The range
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Ch. 3Selected Chronic Conditions, Technology, and Biomedical Research l 7 7 of cost is due to differing costs of various management techniques. of the three components of these costs (labor, laundry, and supplies), the labor involved in handling an incontinent patient is the major contributor, Assuming that there are approximately 600,000 nursing home patients with some degree of urinary incontinence and that, in threequarters of these patients, the incontinence is of sufficient severity that catheters or other specific management techniques are used, the yearly first-order costs of incontinence in U.S. nursing homes can be estimated at between $0.5 billion and $1.5 billion. This represents between 3 and 8 percent of the total expenditure on nursing home care in this country (58). The costs of incontinence in the community are much more difficult to estimate and no studies have addressed these costs in detail. First-order costs were estimated to be lowest for patients with indwelling catheters. Yet for these same patients the second-order costs were highest because of the high incidence of urinary tract infection associated with continuous use of these devices. A conservative estimate of the second-order costs of incontinence is between $2,000 and $3,000 per patient per year. The National Institute on Aging is currently funding a study on methods to reduce complications associated with indwelling catheters in order to reduce second-order costs and possibly render these catheters less costly alternatives to other treatments in the nursing home setting. PAYMENT Except for diagnostic evaluation and services delivered as part of an acute hospitalization, 3 Medicare coverage for incontinence products is quite limited. Part B of the plan only pays for a prosthetic device that replaces an inoperative body organ or function thereof. Thus sphincters or ileostomy bags would qualify, but catheters, bedpads, and undergarments would not. Medicare also does not pay for most bedpads and undergarments used outside of the hospital. 3Nleciicare co~wrage of acute hospital costs under Part A changed draznaticallj with the introduction of diagmosis-related groups i n october I %43. The all-inclusite price will not specifically pay for an incontinence dmice. Coverage for urinary incontinence products under Medicaid varies from State to State. Undergarments and other disposable products are least likely to be considered medical equipment and are therefore the least likely treatments to be covered. Medicaid covers these products in some States, such as New York, California, Florida, Illinois, and Michigan. In other States, such as New Jersey, these products are not covered. Even in those States in which Medicaid covers the products, the type and extent of coverage vary considerably. Furthermore, State requirements for coverage and payments change frequently. Given present fixed reimbursement rates in most States, the first-order costs of incontinence ($3 to $11 per day) represent 7 to 27 percent of the daily per diem provided by Medicaid (about $41 per day in California for 1984). The result is often reluctance of nursing homes to accept incontinent patients. Several States have developed or are developing case-mix reimbursement strategies that recognize the rising costs of incontinence; the emphasis, however, is on managing such patients rather than on treatment to improve their condition. Moreover, second-oder costs, as for treatment of skin breakdown or urinary tract infection, are largely covered by Medicare. The financial incentive for nursing homes is therefore to use the cheapest treatment in terms of first-order costs (e.g., an indwelling catheter) regardless of possible resultant complications. An experiment conducted by the National Center for Health Services research is currently testing the effects of paying nursing homes an incentive to accept incontinent patients and a bonus if they improve their functional condition (70). Conclusion Urinary incontinence afflicts a significant percentage of our elderly population with detrimental effects on their physical health, psychological well-being, and social functioning, and constitutes a costly health care problem. There are several barriers to effective treatment, including lack of knowledge about the most effective treatment for particular types of incontinence, lack of public awareness of the variety of technologies available
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78 Technology and Aging in America (many curative), social stigma, and limited access reducing or removing these barriers could reduce to health care due to minimal, inconsistent govthe impact on affected individuals and their careernment reimbursement for most of incontinence givers, as well as reduce costs through decreased treatments and products, especially for the noninstitutionalization and reduced use of other institutionalized. Improving the quality and availhealth care resources. ability of treatment for urinary incontinence by Hearing impairment in the elderly 4 Hearing loss is a major problem for the elderly. National surveys show that hearing impairment is the third most prevalent chronic condition among the noninstitutionalized elderly, exceeded only by arthritis and hypertensive disease (93,94). As the older population grows, the number of hearing impaired individuals will increase rapidly. Because the over-75 population has a very high prevalence of hearing impairments and is growing at a faster rate than the elderly population as a whole, the total number of hearing impaired elderly individuals will rise dramatically. At present, more than 7 million elderly persons have significant hearing impairments. If current rates persist, there will be more than 10 million hearing impaired elderly persons by the year 2000. Hearing impaired individuals include both those who are deaf and those who are hard of hearing. Hard of hearing refers to a degree of hearing impairment that interferes with comprehension of speech, although partial auditory function remains. Deaf refers to a degree of impairment that renders hearing nonfunctional for the ordinary purposes of life (90). Only a small proportion of the elderly with hearing impairments are deaf, but even the partial loss of hearing that is often associated with aging can limit independence and negatively affect quality of life for the elderly. Hearing loss restricts the individuals ability to interact with others and to give, receive, and interpret infor4 This section summarizes an OTA background paper, Management of Hearing Impairment in the Elder(v, which draws heavily on G. Becker, R. M. Flower, L. E. Glass, and R. J. Newcomer, The Management of Hearing Impairment in Older Adults and American Speech-Language-Hearing Association, Management of Hearing Impairment in Older Adults, OTA contract No. 333-8970.0, 1984. mation. Sound is important for self-protection and identification of hazards in the environment. Ultimately, hearing loss can affect mental and physical health, decreasing the ability of some individuals to function independently and increasing the need for formal and informal long-term care services. Prevalence The prevalence of hearing impairment is measured by two methods, interviews and audiometric testing. The interview method underestimates the prevalence of hearing impairment because many individuals, particularly the elderly, are not aware of their hearing loss or may deny or minimize its severity. Audiometric testing results in more accurate information about prevalence and also measures hearing at specific frequency levels; this is important because hearing acuity in the elderly varies greatly according to frequency. Audiometric tests that measure hearing of pure tones, however, underestimate the extent of dysacusis, a condition that is widespread among the hearing impaired elderly. Individuals with dysacusis can hear pure tones but have difficulty understanding speech because of deficits in auditory discrimination (84). Prevalence of hearing impairment by age, gender, race, income, and institutional status is discussed here. These data reflect prevalence of hearing impairment in the total population but may not apply in a given geographic area. For example, the prevalence of chronic ear infections among certain ethnic groups in Alaska and in the Southwest increases the prevalence of hearing impairment in these areas, Similarly, in areas where high-noise industries are concentrated, hearing
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Ch. 3Selected Chronic Conditions, Technology, and Biomedical Research 79 loss is much more prevalent among the working age and older populations. AGE Interview surveys indicate that the prevalence of hearing impairment rises sharply with age, from less than 2 percent of those under 17, to about 12 percent of those 45 to 64, 24 percent of those 65 to 74, and about 39 percent of those over 75 (92). The severity of hearing impairment also increases with age (91). Audiometric testing indicates that hearing impairment varies according to the frequency of the sound. As figure 13 indicates, the elderly have much greater hearing loss for high-frequency than low-frequency sounds. While most speech is in the frequency range of 500 to 2,000 hertz, sounds such as S, T, K, and P are heard at higher frequencies, and elderly persons with hearing impairments are often unable to hear these sounds. GENDER Interview surveys show that elderIy men have a higher prevalence of hearing impairment than elderly women. For example, one study found that 29 percent of men ages 65 to 74 had hearFigure 13.Percent of Adults Aged 25 to 74 With Hearing Impairment, by Frequency of Tone in the United States, 1971-75. 100 5 0 40 30 28,2 20 10 I 7.6 16.8 4.7 2.62.0 59.8 43.1 25-34 35-44 45-54 55-64 65-74 Age SOURCE National Center for Health Statistics, Basic Data on Hearing Level of Adults 25-74, Off Ice of Health Research Statistics and Technology, 1980
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80 l Technology and Aging in America ing impairments compared with only 20 percent of women in that age group. Among those over 75, 44 percent of men but only 35 percent of women have hearing impairments (92). Some scholars suggest that these differential rates result from mens longstanding exposure to noise in heavy industry and other work-related situations. Audiometric testing indicates that elderly men have a higher prevalence than women of hearing loss at high frequencies. One study showed that 49 percent of men over 65 had a moderate to severe hearing loss at 4,00 hertz, compared with only 17 percent of women over 65. Elderly women, however, have a slightly higher prevalence of hearing loss at low frequencies (95). The reasons for these differences are not known. RACE Interview surveys indicate a lower prevalence of hearing impairment among black persons of all ages than among whites. For example, blacks age 65 to 74 (bath sexes) showed an impairment rate of 18 percent, while whites in the same age group showed a rate of 25 percent (92). Audiometric testing shows that elderly blacks have a lower prevalence of severe hearing impairments than elderly whites, but a higher prevalence of moderate hearing impairments (95). INCOME Persons with low family incomes have higher rates of hearing impairment than their wealthier counterparts. For example, one interview survey found that the rate of impairment among persons 65 to 74 with annual family incomes below $3,000 was 30 percent. For the same population group with incomes in excess of $15,000, the rate was 20 percent. with only minor variation, this inverse relationship to income is sustained for all age categories (92). INSTITUTIONALIZATION The prevalence of hearing loss among the institutionalized elderly is greater than among the noninstitutionalized elderly (88). Moreover, a recent study of an institutionalized older population (80) pointed out the inadequacy of self-reports for accurately assessing hearing impairment. Residents of a home for the aged were interviewed about their hearing and were given audiometric tests, Fifty percent of the residents acknowledged a hearing loss, but audiometric testing showed that 75 percent had hearing impairments; 8 percent of the residents reported hearing loss when there was no audiometric evidence of impairment, while 33 percent reported normal hearing but actually had clinically significant loss. These findings suggest that audiometric testing should be a routine procedure for elderly individuals admitted to long-term care facilities. Types and causes of hearing l 0SS among the elderly Types of hearing impairment include conductive, sensori-neural, mixed, and central hearing impairments. These types are based on the site of structural damage or blockage (see fig. 14). ConFigure 14.Physiology of the Human Ear q Malleus h I Incus Ear drum / Stapes 8th Crania l \ nerve \ I tube I Middle I Outer Ear I Ear I Inner Ear In the healthy ear, the outer ear gathers sound waves and directs them to the ear drum, where three bones-the malleus, incus, and stapestransmit the vibration to the cochlea. In the cochlea delicate hair cells translate the vibration into electrical current that passes through the 8th cranial nerve to the auditory centers of the brain. SOURCE OTA From an original by V Friedman, Washington University Medical Center at St Louis.
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Ch. 3Selected Chronic Conditions, Technology, and Biomedical Research 87 ductive hearing impairment involves the outer and/or middle ear. Sensori-neural impairment involves damage to the inner ear, the cochlea, and/or fibers of the eighth cranial nerve. A mixed hearing impairment, as the term implies, is one that comprises both conductive and sensori-neural components. A central processing disorder a hearing impairment that influences the understanding of spoken language; the elderly person may hear the words but be unable to make sense out of them as a result of disorders of the auditory pathways in the brain. Hearing impairment causes an inability to hear environmental sound without amplification. Hearing impairment is sometimes also characterized by an inability to discriminate or understand speech sounds even with amplification. This distortion of sound, which is common among the hearing impaired elderly, can result in the complaint, "I can hear you, but I cant understand you. Tinnitus is often an accompanying complaint of those who have hearing loss. It is a ringing or buzzing in the ears or head, the cause of which is unknown. The prevalence of tinnitus increases with age, and is more common in women than men (84). Another problem often seen in older persons with hearing loss is recruitment, an inability to tolerate loud sounds. This condition can interfere with satisfactory use of a hearing aid. Causes of conductive and sensori-neural hearing loss are listed in table 8. The most common type of hearing loss in the elderly is prebycusis, a sensori-neural loss resulting from changes in the inner ear. These changes can include decreased numbers of hair cells or nerve fibers in the cochlea and fibrous changes in the small blood vessels that supply the cochlea. Some researchers believe that presbycusis is associated with normal aging, while others believe it results primarily from disease conditions. Not all elderly individuals have presbycusis, and some people in their 90s and older retain acute hearing. THE ONSET OF HEARING IMPAIRMENT The onset of hearing impairment can occur before birth or in early childhood before language is acquired, during early or middle life, or durTable 8.-Causes of Conductive and Sensori.Neural Hearing Impairments Causes of conductive hearing impairments: External blockage: buildup of wax or presence of a foreign object in the ear, which is very common in the elderly. Perforated eardrum: a hole or tear in the eardrum, which can occur as a result of injury, sudden pressure change, or infection. Genetic and congenital abnormalities: malfunction and/or malformation of the outer and/or middle ear. Otitis media: middle ear infection and accumulation of fluid. Otosc/erosis: disease process affecting the mobility of the middle ear bones, which is thought to be hereditary. Causes of sensor-nural hearing impairment: Presbycusis: literally, old hearing. The term has been used to describe hearing impairment that occurs with old age. Presbycusis may be sensory, neural, metabolic, or vascular in nature. Hereditary hearing loss: includes a great variety of disorders that affect the sensori-neural mechanism and are usually present at birth. Trauma-induced: caused by a severe blow to the head, an accident, or a stroke or brain hemorrhage that affects the ear, auditory pathways, and brain centers. Tumors: acoustical neuromas and tumors that invade the eighth nerve. Noise damage: brief or continued exposure to high-intensity sound, which irreparably damages the hair cells. Vascular incidents: related to hypertension, heart disease, or other vascular problems that may alter blood flow to the inner ear. Drug-induced hearing loss: drugs such as aspirin, and some antibiotics, diuretics, and certain powerful anti-cancer drugs can damage the hair cells or other vital parts of the inner ear. Viral and bacteria/ illness: such as mumps, meningitis, or encephalitis, and rubella contracted by expectant mothers, are some common disease processes that are well-documented as etiologies for hearing impairment. Menieres disease: characterized by fluctuating hearing loss, dizziness, and tinnitus, the possible causes range from allergy to hypothyroidism and diabetes. SOURCE: American Speech and Hearing Association, Management of Hearing Impairment in the Elderly, prepared for OTA under contract No, 333-8970.0, 1984 ing later life. People who have been deaf since childhood have had time to adjust to their hearing losses and to develop behaviors to cope with the social isolation resulting from deafness (77), but additional problems acquired late in life may seriously affect their functioning. For example, poor vision in old age may interfere with lipreading techniques the individual has used successfully throughout life. The elderly who become hearing impairedl ate in life present different problems because they must acquire an entirely new and complex system of communication in order to maintain social
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82 Technology and Aging in America interaction. Little information is available about the special problems of acquired hearing impairment among adults, and particularly the elderly. Impacts of hearing impairment Hearing impairment causes social and psychological difficulties by interfering with the individuals ability to communicate with family and friends. This can lead to withdrawal, social isolation, and depression. Loss of hearing interferes with the elderly persons ability to compensate for other losses that can occur with aging, such as loss of relationships due to the death of spouse, siblings, and friends, loss of a familiar home or community, and worsening health and mobility. Lack of easy communication means decreased access to new people, new activities, and new services. Hearing impairment limits access to information that is normally available through personal communication, telephone, radio, and television. For elderly individuals who have both hearing and visual impairments, access to information is often severely Iimited, and some research indicates that restricted access to information can contribute to the progressive development of confusion; further research is needed in this area. Perhaps more important than any actual confusion related to hearing loss is the widespread assumption that elderly persons who are hearing impaired are also confused. In a study conducted in a hospital, health care professionals described their impatience with elderly persons with hearing losses. Several respondents said the method they used in interactions was to scream at them. This behavior was considered acceptable since the patients were old, and probably senile, too (76). DENIAL OF HEARING IMPAIRMENT Many elderly individuals deny they have a hearing problem despite significant evidence to the contrary. Negative social attitudes about hearing impairment and growing old encourage denial, Hearing impairment is not visible, and in= visibility facilitates denial In addition, hearing impairment in the elderly is often characterized by very gradual onset that can make the impairment difficult to recognize. For elderly persons with one or more lifethreatening illnesses, hearing impairment may seem insignificant by comparison. The onset of depression and withdrawal associated with hearing impairment may be slow and insidious and may appear unrelated to hearing loss. Accidents that occur as a result of the elderly persons inability to receive aural cues are frequently ambiguous as to cause. Similarly, difficulties in communication and social relationships may not be attributed to hearing loss, even when the loss is acknowledged. As a result, hearing impairment is often not seen as important by the elderly, their families, and health care providers. Denial of hearing impairment and failure to recognize its impact on independent functioning are clear obstacles to effective treatment. Treatment of hearing impairment Treatment of hearing impairment includes methods to: 1) prevent hearing impairment or reduce its severity, 2) improve the individuals communicative competence through amplification or other electronic and mechanical devices, 3) adapt public facilities to accommodate the special needs of hearing impaired people, and 4) help people to manage their hearing problems by providing information about devices and other compensatory strategies to reduce communication handicaps. Potential treatments for hearing impaired people are the same regardless of age, The suitability and effectiveness of each approach, however, differs considerably among the various age groups, because of the type of hearing loss most frequently encountered and because of other physical, psychological, and social characteristics of each age group. PREVENTION Prevention is an obvious first approach to treatment. At present, too little is known about the causes of hearing loss associated with aging to allow effective preventive measures. Dietary factors and circulatory changes have been impli-
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Ch. 3Selected Chronic Conditions, Technology, and Biomedical Research l 8 3 cated, if not as direct causes, at least as accelerators of deterioration in the auditory system. More vigorous research efforts might identify specific factors that would ultimately lead to precise prevention strategies. Some hearing impairments in older people result from preventable problems that began earlier in life, such as untreated infections and exposure to noise. Better health care throughout life and effective noise control procedures could ultimately reduce the prevalence and severity of hearing loss among older people. Some drugs damage auditory mechanisms. The best known ototoxic drugs are the aminoglycosides, a class of antibiotics that includes streptomycin; these drugs may be lifesaving but can adversely affect hearing. Aspirin can also be ototoxic, though probably only in the high dosage levels sometimes used in the treatment of arthritis. Aspirin-induced hearing loss is usually reversible if it is recognized early and dosage is reduced. Too little research has been done on the mechanisms of ototoxicity and the essential chemistry of ototoxic agents. Educational efforts have been effective in informing most physicians of the hazards of streptomycin, but the ototoxicity of other drugs is frequently not recognized. MEDICAL AND SURGICAL TREATMENT The likelihood of curing hearing impairments in the elderly with available medical or surgical treatment is limited because they are almost always sensori-neural losses most of which are currently not treatable. The exceptions include removal of acoustic tumors, and surgical treatment of Menieres disease. The cochlear implant is a relatively new treatment for sensori-neural hearing loss. This electronic device is surgically implanted in the inner ear to pick up sound waves, change them to electrical signals, and carry them past the cochlea to the auditory nerve (82). The purpose of the implant is neuroelectrical simulation of natural hearing, but full attainment appears far in the future. The sound produced by available implants has been described as fluctuating grating noises and buzzes that are not the same as normal sound (85), and users need extensive training to learn to interpret the sound. Research to improve the cochlear implant continues in the United States and other countries. In its present form, the cochlear implant is not appropriate for most elderly hearing impaired people who usually have partial. hearing loss rather than the profound deafness for which the device is now used. In the future, as the cochlear implant is improved through research and testing, it may become an important treatment option for sensori-neural hearing loss among the elderly. TECHNOLOGIES TO COMPENSATE FOR HEARING IMPAIRMENT Since only a small proportion of the hearing impaired elderly can benefit from medical or surgical treatment, other approaches to treatment are needed. These approaches do not change the underlying condition but provide methods to compensate for hearing loss and maintain adequate communication. Such methods include the use of personal listening devices and amplification systems, adaptations of the telephone system, and signaling and alarm systems. Hearing AidsHearing aids are amplification devices designed to compensate for partial hearing loss. They have benefited thousands of individuals, allowing them to function in communication situations that otherwise would have been impossible. Yet only about 13 percent of all persons with hearing impairments use hearing aids. The elderly are more likely to use hearing aids than younger people: about 20 percent of all hearing impaired persons over 65 use hearing aids, and those with more severe impairments are more likely to use them (91). Deterrents to the use of hearing aids include problems in instrument design and performance, social and psychological factors, and cost. Hearing aids do not restore normal hearing for most users. The quality of sound is mechanical, and the amplification of distracting background noise is a problem for users of all ages. Some specific hearing deficits that are common in the elderly, such as more severe hearing loss at high frequencies and distortion of sound due to abnormalities in the sensory cells, require tai-
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84 l Technology and Aging in America loring of the hearing aids operational specifications. Sound processing techniques are available to make these adaptations, but most of these techniques are not widely used, partly because of the difficulty of identifying the precise deficits experienced by each individual (85). Audiologists are trained to evaluate hearing deficits, but many elderly individuals buy hearing aids from hearing aid dealers without seeing an audiologist. Moreover, even when a comprehensive evaluation is done, the audiologist or hearing aid dealer may have difficulty selecting the appropriate hearing aid because of the lack of reliable technical information about different brands and types of hearing aids (79). Social and psychological factors that discourage use of a hearing aid include reluctance to call attention to the hearing impairment and disappointment with the quality of sound provided by the hearing aid. Individuals who once had normal hearing often expect that a hearing aid will return their hearing to normal, and the disappointment they experience in trying to adjust to a hearing aid can create significant acceptance problems. Some experts believe that the elderly have more difficulty adjusting to hearing aids than younger people because of so-called age-related inability to adjust to something new, but it is also possible that many elderly individuals are not using their hearing aids because the aids are inappropriate for their hearing impairments. other Personal Listening Devices.Three other personal listening devices can compensate for hearing loss: audio loop systems, FM amplification devices, and infrared amplification devices. These devices transmit sound directly from the source to the listener, thus eliminating background noise that interferes with hearing. They have been used primarily in classrooms and public facilities, such as theaters and churches, and are often called large room systems, but they are now being used by individuals for interpersonal communication and TV and radio listening. This use is particularly appropriate for the elderly because they usually have partial rather than complete hearing loss, and in many cases these devices can provide satisfactory amplification. Moreover, no training is needed to learn to use these devices. Audio loop systems, FM amplification devices, and infrared amplification devices can also be used with the hearing aid to eliminate bothersome background noise. The Use of Devices for Public Access: The Rehabilitation Act of 1973 prohibits discrimination against disabled individuals by any program, activity, or facility receiving Federal assistance. The law requires that these facilities be accessible to people with all kinds of handicaps, including hearing impairment, but the emphasis has primarily been on adapting facilities for people with mobility problems. This has occurred even though the costs of providing access to the hearing impaired with technologies such as FM and infrared amplification devices are usually minimal compared with the costs of major modifications in architecture. While public funding has been available for architectural modification% the costs of improved accessibility for the heap ing impaired have been paid primarily by the private sector. Telecommunications Systems. -Inability to use the telephone is one of the most common problems of hearing impaired individuals. For the elderly, particularly the great number who live alone, the telephone is a link to the outside world; inability to use the telephone can compromise safety and interfere with independent functioning. Hearing over the telephone is difficult even for those with mild hearing loss because telephone signal transmissions omit very lowand high-frequency sounds that are important for understanding speech. Line noises and other sound distortions also interfere with the quality of sound transmission. In the future, as the need grows to transmit more conversations over limited channels, this problem may become worse. Methods for increasing channel capacity involve omitting parts of the speech message that are considered unimportant, but the standards for what is unimportant are based on the hearing ability of younger persons with normal hearing. Research is needed to document the effect of these omissions on the hearing ability of elderly and other hearing impaired individuals (78). Devices to assist hearing impaired individuals to use the telephone include amplifiers that can be built into the telephone handset or attached
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Ch. 3Selected Chronic Conditions, Technology, and Biomedical Research 85 to the side of the telephone, and telecoils that are built into hearing aids to pickup electronic signals directly from the telephone receiver, bypassing the hearing aid microphone. The Telecommunications for the Disabled Act of 1982 requires that all telephones installed in essential places such as hospitals, hotels, and similar public facilities be compatible with hearing aids. Because there are no comparable requirements for hearing aids, however, aids can now be sold that are not compatible with these telephones. For individuals with severe hearing impairments, other devices are available or in the development stage. These devices include: l teletypewriters (TTYs) that allow individuals to type a message that is carried over phone lines, l Teletex and Viewdata information retrieval systems for transmitting text and simple graphics to a television receiver, and l Picturephone and Vistaphone devices that transmit a visual image of the speaker over an ordinary telephone line and allow communication through lipreading or manual sign language. It is not known how many elderly individuals use or could use these devices. The TTYs and Viewdata systems require that the speaker type all messages. The Picturephone and Vistaphone are only helpful to those who communicate through lipreading or sign language. Since few elderly individuals use these methods of communication, the usefulness of these devices for the hearing impaired elderly is limited. The development of effective computerized speech recognition systems could greatly simplify telephone use for the hearing impaired. These systems convert spoken words into printed output that could be displayed on a screen attached to the telephone. Currently available speech recognition systems have major limitations: they recognize only a few words and sometimes confuse words, and their performance varies widely from speaker to speaker. Future refinements of this technology could facilitate telephone use for the hearing impaired elderly. Signaling and Alarm Systems.Signaling and alarm systems that convert sound to visual or tactile signals are important for the safety and independence of hearing impaired persons. Flashing lights and vibrating devices that signal the ringing of a fire alarm, smoke alarm, telephone, doorbell, or alarm clock substitute for sounds the person cannot hear. Tactile Paging Devices use radio signals to generate vibrations in a portable receiver carried by the hearing impaired individual. One serious block to use of these devices by the elderly is lack of awareness of devices that could be helpful. Information about these devices is available within the informal deaf community, which is primarily comprised of younger individuals who have been deaf since childhood or early adulthood, and their families. The elderly, however, are seldom part of the informal deaf community, so they lack access to this source of information. Since the elderly usually do not receive comprehensive aural rehabilitation services, they do not learn about available devices from hearing specialists. Aural Rehabilitation.Aural rehabilitation services are designed to help individuals communicate more successfully with or without the use of a hearing aid or other personal listening device. These services are usually provided by audiologists and are briefly described here: l Hearing aid orientation includes instruction in the care and maintenance of the aid and earmold, practice inserting the earmold and batteries, and instruction in the use of amplification in a variety of listening situations. l Auditory training involves systematic training in the use of residual hearing. The individual is taught to recognize and differentiate sounds and intonational patterns that give clues about the content and meaning of speech. This training is presently used almost exclusively with children, but the elderly, who usually have some residual hearing, could also benefit from this approach. l Speechreading is the use of visual cues to facilitate understanding speech. It is similar to lipreading but involves attention to facial,
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. 86 l Technology and Aging in America l throat, and body positions in addition to lip movements (81,87). Few elderly individuals are taught speechreading techniques, even though these techniques are particularly effective for individuals who have only partial hearing loss. Cued speech is a method of communication that supplements speechreading and is being used with elderly individuals in a few places in the United States. Cued speech involves the use of hand signals and hand positions that clarify the lip and facial positions associated with speech sounds. Counseling can address negative attitudes that interfere with rehabilitation. It can help to develop strategies to manage social situations and other life activities in ways that will lessen the handicap (81). The elderly are particularly likely to believe that their hearing losses are hopeless, and some elderly individuals suggest that services be directed toward a younger person who could derive greater benefit. Counseling can help to overcome these feelings. Despite the potential benefits of aural rehabilitation, few elderly individuals receive these services. Reasons for this include lack of awareness of the value of the services by the elderly and their families, the cost of the services, and the historical focus of hearing professionals on the needs of profoundly impaired children. Environmental Desigm-Building design characteristics affect the behavior of sound and the relative ease or difficulty of hearing. For example, hard-surfaced walls and floors reflect sound, creating reverberations that interfere with hearing, while sound-absorbent wallcovering materials decrease reverberations (83). While much is known about design characteristics that affect hearing, this information is seldom applied in buildings used by the elderly. Reduction of reverberations and background noise in these facilities could ameliorate some of the problems of those with hearing loss. The service delivery system SERVICE PROVIDERS Hearing services for the elderly are provided primarily by physicians, audiologists, and hearing aid dealers. Although few hearing impairments of older people respond to medical or surgical treatment, some elderly persons see a primary care physician as a first step in treatment. Depending on their symptoms, they may be referred to a specialist, who is usually an otolaryn gologist. Physician evaluation is important to identify impairments that are medically treatable, but physicians usually receive little training in the management of hearing impairments and alternative approaches to compensate for hearing loss. 5 Audiologists are nonmedical specialists trained in the identification and evaluation of hearing impairment and rehabilitation of individuals with hearing deficits. Audiological evaluation includes assessment of hearing threshold sensitivity, speech discrimination ability, and residual auditory function. Audiological testing helps to determine the type of hearing aid needed, and some audiologists dispense hearing aids. Audiologists also provide hearing aid orientation and counseling for hearing impaired persons, families, and health care providers in a variety of settings. Hearing aid dealers sell hearing aids and hearing aid accessories, such as batteries, earmolds, and spare cords, and may also repair hearing aids. They often receive as little as 1 weeks training from hearing aid manufacturers and much of this training focuses on sales management. The National Hearing Aid Society (NHAS) offers a 20-week home-study course, but many dealers do not take the course. Moreover, an expert panel review of the home-study course found many deficiencies including incorrect, oversimplified, and outdated information. The review panel concluded that the home-study course was not only inadequate but potentially dangerous. It is dangerous in the same way that quack medicine is dangerous it postpones or prevents adequate evaluation, diagnosis, and treatment of hearing loss and its accompanying pathology (89). 5 Otolaryngologists receive some training in hearing measurement techniques and amplification, but few otolaryngologists receive extensive training in sophisticated aspects of auditory processing and its relationship to communicative ability. Their training focuses pri. marily on medical diagnosis for and medical/surgical treatment of conditions affecting the ear, nose, throat, head, and neck, and on facial, cosmetic, and reconstructive plastic surgical techniques.
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Ch. 3Selected Chronic Conditions, Technology, and Biomedical Research l 8 7 The National Hearing Aid Society confers the title certified hearing aid audiologist on dealers who pass the NHAS home-study course. This title can lead consumers to believe that the dealer possesses expertise that he does not have. The Federal Trade Commission (FTC) has proposed a rule that would prohibit the dealers use of the term certified hearing aid audiologist The use of this term by dealers is already prohibited in several States. The most valuable aspect of the dealers role in the hearing aid delivery system is that of a prosthetic dispenser. Dealers are trained and qualified to make earmold impressions, to fit the final earmold product and the hearing aid for comfort, and to provide hearing aid wearers with basic instruction concerning the operation and care of hearing aids. They are generally not qualified to provide the comprehensive auditory evaluation needed by the hearing impaired elderly. Many elderly individuals enter the service delivery system through a hearing aid dealer. When they are fitted with hearing aids without consulting an audiologist they risk purchasing an aid that is of no value to them. Speech therapists, social workers, psychologists, nurses, and other caregivers sometimes provide physical, emotional, and informational support to the hearing impaired elderly. These professionals often know very little about treatments, devices, and rehabilitative approaches that might ameliorate the hearing loss. The education of all human services professionals should include information about the causes and treatment of hearing impairments in the elderly. FEDERAL REGULATION OF THE DELIVERY SYSTEM Some aspects of hearing aid sales are regulated by the Food and Drug Administration. The FDA requires that the consumer must give the hearing aid dispenser a written statement from a physician, certifying that the hearing loss has been evaluated and that the individual may be a candidate for a hearing aid. However, consumers who are over 18 may sign a form waiving the requirement of a physicians evaluation. There is no objective information about the number of aids that are dispensed on the basis of these waivers, but it has been informally estimated that in some communities up to 80 percent of all aids are dispensed through waivers. FDA regulations also require that the customer receive an instructional brochure describing the use and care of the aid, sources of repair and maintenance, and a statement that the hearing aid may be only part of a rehabilitative program that may also involve speechreading or auditory training. The regulations require a warning to dispensers and purchasers that certain conditions make medical consultation advisable prior to purchase of an aid. While the FDA regulations were intended to address safety and effectiveness, they offer no assurance that any hearing aid that is sold will benefit the purchaser. Furthermore, in providing a waiver for even the requirement of physician evaluation prior to sale, the regulations surrender all semblance of quality control. Regulations that thus purport to offer consumer protection, but do not in fact do so, may be more dangerous than no regulations at all. During the mid-1970s the FTC initiated a major effort to develop regulations for hearing aid sales. Recommended regulations, published in 1978, included restrictions on in-home sales, marketing of used hearing aids, and the use of testing programs to identify potential customers. The regulation that was most vigorously contested by the hearing aid industry would allow a hearing aid purchaser or renter to cancel the sale or rental within 30 days and receive a refund. These recommended regulations were strongly supported by consumer advocates and organizations for the hearing impaired, but no regulations have been promulgated as of october 1984, a full eight years after the rules were proposed. The FTC is presently sponsoring a survey of hearing aid users, and results of the survey will be used by the commissioners to determine the current need for regulations, Funding for treatment of hearing impairments Hearing services for the elderly are paid for by government programs, such as Medicare and Medicaid, private insurance, and direct out-of-
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88 l Technology and Aging in America pocket payments. Medicare pays for medical and surgical hearing services provided by physicians, and some services provided by audiologists, but only when authorized by a physician. Medicare does not pay for audiological evaluations related to the prescription of hearing aids. Purchase of hearing aids and other assistive listening devices are also not covered by Medicare. Hearing aids are the most common treatment for hearing impairment in the elderly, and lack of Medicare funding for hearing aids has a severe effect on the provision of effective treatment. Many elderly individuals purchase hearing aids, but few are also willing and able to pay for an audiological evaluation that could specify an appropriate aid. Without this evaluation it is likely that the hearing aid will be ineffective. Medicaid pays for medical and surgical hearing services provided by a physician to low-income patients. some services provided by audiologists are covered by Medicaid in most States, and Medicaid pays for hearing aids in about half of the States. A major problem in many States that have Medicaid reimbursement for audiological services and purchase of hearing aids is that the reimbursement rates are so low that providers refuse to serve Medicaid patients. Another problem with reimbursement for hearing services by both Medicare and Medicaid is the complexity of Federal and State regulations that govern reimbursement, especially for audiology services. Private insurance companies cover some hearing services, but each insurance policy is independently negotiated, and it is difficult to specify exactly which hearing services are covered by which insurers for which groups of beneficiaries. Most policies reimburse for hearing services provided by physicians and some hearing services provided by audiologists, but routine evaluations to detect hearing loss and services related to degenerative hearing loss are not covered. Hearing aid evaluations and hearing aids are also not covered. Since Medicare and private insurance do not pay for audiological evaluation or purchase of hearing aids or other assistive listening devices, the elderly must pay for these services and devices themselves or do without. Federal Government programs for the hearing impaired elderly Hearing impairment among the elderly is a Federal Government concern because of its impact on the safety and quality of life of elderly people and because of the need for publicly funded health and social services for the hearing impaired. Federal initiatives to address these concerns have included funding for research and some hearing services, legislation to guarantee access to public services and facilities for the hearing impaired, and regulation of hearing aids. While these initiatives have benefited hearing impaired individuals of all ages, there is a need for programs that address the specific problems of the hearing impaired elderly. The prevalence of hearing loss in the elderly far exceeds that of most chronic diseases and disabilities of later life, but the magnitude of this problem has not been reflected in the amount of research that has been conducted in pathology, prevention, treatment, and rehabilitation. Most hearing-related research has been directed toward the most severe hearing problems and particularly the problems of deaf children. In contrast to children, however, hearing impairment in the elderly is often mild or moderate, instead of severe, yet it is very widespread; it is often progressive; it usuaIly has a gradual onset and is frequently not recognized for some time; and finally, hearing impairment in the elderly often coexists with other health problems that complicate treatment and limit the effectiveness of available assistive devices. Research is needed on causes of hearing impairment in the elderly and appropriate treatment methods. Denial of hearing impairment is a continuing obstacle to treatment. public education to increase awareness about the extent and type of hearing impairments among the elderly is needed, Few of the hearing impairments of the elderly respond to medical or surgical treatment, and the most effective method of treatment available at present is the use of devices and techniques that compensate for hearing loss. The elderly, their families, and health care providers need information about the kinds of devices that are available to compensate for hearing impairment.
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Ch. 3Selected Chronic Conditions, Technology, and Biomedical Research l 8 9 Assistive listening devices have been developed in the United States primarily by universities with rehabilitation programs and by commercial manufacturers. Marketing of new devices has been a problem, and testing procedures for devices have been inadequate. In some industrial countries such as Sweden, development, funding, dissemination, and repair of devices are considered a national responsibility, In the United States the Veterans Administration (VA) has a comprehensive program of device development, testing, and patient services, but outside of the VA, the delivery system is splintered and often ineffective. Extension of the VA model of services could stimulate device development and improved service delivery. Osteoarthritis osteoarthritis is one of the most important causes of chronic disability in the United States and other developed countries. The disease is found in all organisms with bony skeletons (98). Although it is not a disease of modernity-evidence of it has been found in the skeletons of Neanderthal Man and even some dinosaursbecause the incidence of osteoarthritis rises with age, and because its prevalence increases as individuals live longer, it has become much more common in recent years. This rising prevalence may give osteoarthritis the highest morbidity rate of all mankinds diseases (98). Some evidence of the disease has been found in 90 percent of people by age 40 (in autopsy studies), but it causes symptoms only in a minority at that age. Variations in diagnostic criteria render statistics on incidence and prevalence uncertain, as they are for many other disorders. All estimates, however, indicate that the process that underlies osteoarthritis occurs in almost everyone if they live long enough, and that symptoms become increasingly prevalent and more intense with age. The disease is severe enough in 16 million to 20 million Americans to cause symptoms (97,105). Some form of arthritis other than rheumatoid ar6 Sharks, which do not have bony skeletons, but do have cartilaginous ones, are evidently immune to the ravages of osteoarthritis, A final concern is the failure of the hearing impaired elderly to utilize aural rehabilitation services. Although hearing loss in the elderly is often mild or moderate, it is not simple, and its effects can be very serious. Government initiatives to increase the use of aural rehabilitation services could include increased funding and simplification of the complex requirements for these services under Medicare and Medicaid. In addition, public education programs are needed to increase awareness of the potential benefit of these services among the hearing impaired elderly and their families. thritis was reported as affecting 47.5 percent of those over 65 in 1981 (see Appendix A: Morbidity and Mortality Data) and osteoarthritis would constitute the vast majority of such cases. Osteoarthritis causing severe or moderate pain was noted in 6.6 percent of those 65 to 74 in the National Health and Nutrition Examination Survey (this includes only those cases for which patients reported symptoms) (112). Had older age groups been surveyed, the prevalence would have been far higher. Other surveys have found evidence of the disease in patients to dramatically increase with age; changes in joint X-rays can be found in only 4 percent of those aged 18 to 24, but in 85 percent of those 75 to 79 (105). Of those showing some X-ray evidence of the disorder, 23 percent reported moderate or severe symptoms. The prevalence of osteoarthritis is higher in white populations and lower in blacks, American Indians, and Asians living in Asia. Osteoarthritis is a major factor in health care costs and patient morbidity, but, like dementia, is not a direct cause of death. osteoarthritis causes an estimated 46 million visits to physicians, 3.7 million hospital days, 185 days spent in bed away from the hospital, and loss of 68 million workdays per year in the United States (104). The Arthritis Foundation estimated the total costs of all forms of arthritis at $13.3 billion in 1983 (96),
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. Technology and Aging in America of which osteoarthritis accounted for approximately 60 to 70 percent (more than $7 billion). Although it is only one of hundreds of causes of arthritis, it affects far more individuals than any other cause. Osteoarthritis should not be confused with rheumatoid arthritis; only osteoarthritis is reviewed in this report. Rheumatoid arthritis is the second most common form of arthritis, affecting an estimated 6 million to 7 million people, but its prevalence in many younger age groups makes it less a disease of aging. Its cause is thought to be disrupted immune function, and is quite distinct from the process underlying osteoarthritis. Definitions and prevalence Arthritis means inflammation of the joint, 7 of which osteoarthritis is one cause, Other names for osteoarthritis include degenerative joint disease, osteoarthrosis, 8 and hypertrophic arthritis. These alternative labels reflect a degree of medical disagreement about the disease process, but the debate over proper terminology is not germane to public policy regarding the condition itself. OTA has selected osteoarthritis because it is the most common term. Osteoarthritis, as used here, refers to the combination of biochemical and anatomical changes in the joint that cause symptoms in at least one joint. Medical definitions of the disease are subject to some controversy. Most physicians consider the diagnosis if there is pain or stiffness and Xray evidence of joint damage. There is disagreement, however, about the X-ray changes that indicate osteoarthritis. Some physicians look for unusual bone formations (osteophytes) around the affected joint. others do not make the diagnosis without evidence of joint narrowing and changes in the bone underlying affected joints. What is osteoarthritis? Osteoarthritis is the symptomatic disruption of joint function. Functional impairment arises from the biological changes described in this section, which provide an introduction to the biology and anatomy underlying osteoarthritis. Joints are fluid-filled spaces lined by cartilage and separating bones; those found on the limbs (legs and arms) are adapted to permit easy movement. Limb joints are most affected by this disease, especially those responsible for weight-bearing (hips and knees), the vertebrae, and (for unknown reasons) the joints closest to the tips of the fingers. Arm and leg joints are composed of a fluid-filled cavity, surrounded by a fibrous capsule (see fig. 15). The surfaces that move against one another are composed of cartilage. The cartilage sits over bone. The cartilaginous surfaces are extremely well adapted to ease of movement; they are four times as slippery as Teflon one of the most frictionless artificial surfaces (98). Disruption of the health of the cartilage tissue can reduce this ease of movement, leading to joint stiffness. Irritation of surrounding tissues leads to the symptom of pain, osteoarthritis is one of the causes of ill health of the joint cartilage. Many types of injury to cartilage can lead to changes similar to those seen in osteoarthritis (102). Such changes include degeneration of the cartilage, faulty attempts at repair, anatomic clefts and blisters, and even complete exposure of underlying bone. Injury can be caused by imposed immobility, removal of tissues that support the joint, and extreme compression. The similarity of normal cartilage repair to osteoarthritis has led some to hypothesize that the disease is an abnormal response to constant minor injury. Joint cartilage relies on adjacent tissues for its health. The surface of joint cartilage is coated with special long chains of sugars and proteins. Biochemical changes of these coatings have been associated with damage to cartilage, and can reduce the slipperiness of the surfaces, causing increased friction and yet more tissue damage. Because cartilage does not contain blood vessels,g it gets its nutrients and other factors from the surrounding soft tissues and, more importantly, underlying bone. Proper cartilage repair apTrem: arthro-(joint) + -itis (inflammation). From: osteo-(bone) + arthro-(joint) + asis (process) Blood Vessels appear to be prevented from growing into cartilage by a molecule that is produced by the cartilage,
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Ch, 3Selected Chronic Conditions, Technology, and Biomedical Research 91 Figure 15.-Diagram of Knee Joint X-Ray Photograph X-Ray Photograph of Arthritic Knee Joint of Normal Knee Joint Bone -Cartilage -Synovial fluid Capusule SOURCE: National Institute of Arthritis, Diabetes, and Digestive and Kidney Diseases pears to require access to cells in the bone marrow (102). The repair process may be sensitive to influences from other tissues as well, including hormones (thyroid-stimulating hormone and somatomedin have been postulated) and other chemical messengers (growth factors, growth suppressors, and certain nucleotides have all been suggested) (98)102), Osteoarthritis can, over a long period, lead to severe joint deformity, enlargement of surrounding tissues, and immobility. Risk factors The most important risk factor for arthritis is age, which cannot be controlled. Other uncontrollable factors include (105): l body type (risk is increased in stocky individuals, decreased in tall thin people); race (risk is increased in Caucasians over blacks, Asians, and American Indians); l diabetes (which may be partially controllable when due to obesity) (98); and l genetic traits (one possible form is influenced by sex chromosomes; another involves many genes). There are also some controllable risk factors: l obesity (many studies support this, but some do not) (98); l occupation (risk is increased in coal miners, dock workers, and dominant hands of weavers, but not in pneumatic hammer drillers); and l exercise. one possible risk factor, exercise, deserves special mention. Many orthopedic surgeons fear that the current popularity of jogging and other vigorous exercises may exacerbate osteoarthritis. It would be ironic if strategies that could prevent some deaths (e.g., from cardiovascular disease and stroke) were to worsen disability due to osteoarthritis. There is ample evidence that overexercise can worsen the condition of those who have the disease. Evidence that exercise can precipitate it, however, is unclear. Studies of marathon runners did not show more osteoarthritis of the hip, and studies of soccer players showed some indications of the disease, but other signs and symptoms were absent (105). Whether osteoarthritis can be caused by exercise thus remains an important unanswered question. Diagnosis The diagnosis of osteoarthritis is made by correlating symptoms of pain and stiffness with Xray evidence of changes in joints. other causes of arthritis must be eliminated by history, physical examination, and laboratory tests. Such other causes include infection, deposits of mineral crystals (from gout or other metabolic disorders), and some systemic diseases. one problem in making 38-800 0 85 4
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92 Technology and Aging in America the diagnosis is that some patients wait for prolonged periods before seeing a professional. Another problem is that physician and patient perceptions of the severity of the illness may differ. one study found that while physicians and patients judgments of the degree of disability agree for low levels, physicians may underrate the disability at higher levels (where such error may make a greater difference) (107). The authors point out that this can erode mutual trust, and can lead to a paradox in that the physician believes that treatment is successful, but the patient does not. Prevent of disability and treatment The Arthritis Foundation notes that patients with osteoarthritis wait an average of 4 years before seeking medical attention from a physician. This is unfortunate, because the progression of the disease can be retarded, and its symptoms ameliorated by routine treatments (table 9). CHANGING THE PATIENTS ENVIRONMENT AND HABITS Some symptoms of osteoarthritis can be prevented by treatment and directed programs of exercise and physical therapy. Some simple interventions can greatly retard the progression of the disease. Use of a cane can, for example, reduce the stress placed on the hip during walking by a factor of 2 or 3 (113). Changing the environment by adapting beds and chairs for easier entry and exit, and arranging living space to avoid use of stairs can greatly diminish the demands on the individual, and can minimize the need for movements that exacerbate the disease (113). Weight reduction is often recommended to reduce the weight strain placed on knees and hips. Job changes away from physically demanding occupations may reduce joint wear and tear, and altering sports activities may be necessary to prevent acceleration of joint degeneration. Devices that compensate for diminished function, especially of the hand and major joints of the legs, could greatly improve the independent and relatively normal functioning of those affected by osteoarthritis. There appears to have been little attention given, for example, to designTable 9.Treatments for Arthritis Assistive devices: l Canes and devices that facilitate walking l Special utensils l Adapted furniture Special stairways l Enlarged keyboards One-floor architecture Physical therapy: l Balanced program of rest and exercise l Special movement and relaxation therapy directed at specific joints l Weight loss Drug thearapy: l Aspirin l Nonsteroidal anti-inflammatory agents l Others (steroids, etc.) Surgical therapy: l Hip joint replacement l Bone reshaping (osteotomy) l Joint debridement Future possibilities: l Specific hormones or growth factors active on joint cartilage l Joint surface replacement l Cartilage transplantation l Improved joint replacement techniques and replacements for joints in addition to the hip l More and better assistive devices SOURCE: Off Ice of Technology Assessment. ing computer keyboards to make them accessible to the millions of Americans whose hand mobility is restricted by this disease. PHYSICAL THERAPY Treatment of osteoarthritis involves balancing joint movement with protecting the joint from excessive movement. This implies the need for a proper balance between exercise and rest. Weight bearing and movement are imperative for proper cartilage repair (98), but overexercise is a wellknown cause of excess disability. Physical therapists, physiatrists (physicians engaged in physical therapy), and other providers can be effective in reducing muscle spasm and in training patients to exercise and rest specific joints. DRUG THERAPY There are several drug therapies for osteoarthritis. The most common is the use of high doses of aspirin. Aspirin has the unusual characteristic of being both a painkiller and an anti-inflammatory agent, which makes it suitable for treating
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Ch. 3Selected Chronic Conditions, Technology, and Biomedical Research 93 both the process that causes pain (inflammation), and the pain itself. Aspirin may also directly affect some biochemical processes involved in cartilage repair, thus improving the repair process. But because it can cause digestive disturbances, ringing in the ears, and other adverse effects, and some patients have violent reactions to it, aspirin cannot be used by all patients. Further, recent reports based on animal studies suggest that some effects of aspirin can inhibit proper healing of arthritic joints (101)108). Such studies have not yet been extended to research on humans, hence their relevance to standard therapy is not yet clear. Among the other drugs used in treating osteoarthritis, the most common is a class of drugs called nonsteroidal anti-inflammatory drugs. These reduce joint inflammation and can prevent some of the resulting pain and stiffness. Many such agents are widely prescribed, including indomethacin (Indocin), ibuprofen (Motrin @ ), naproxen (Naprosyn@), and others. These drugs are, in general, reserved for patients who cannot tolerate aspirin. They are more costly than aspirin, and have significant side effects (109). Several drugs in this group have recently been withdrawn from the market because of side effects, and two others are currently under investigation by FDA. Development of safer anti-arthritic drugs in this class is a high priority in the laboratories of many pharmaceutical manufacturers. Steroid drugs are not generally used for routine treatment because of the many possible side effects, but they can be effectively used by local injection for flare-ups, or before surgery. SURGERY Total joint replacement is a relatively new technique, made possible by technological advances in low-friction materials, biocompatible plastics and metals, and development of cements that can function in bone. The joint most commonly replaced is the hip, but some centers are also performing knee replacement surgery, and surgery on other joints, such as fingers and shoulders, on an experimental basis. More than 60 percent of the 75)000 total hip replacements done in the United States annually are done in those over 65, mainly because of osteoarthritis (110). Hip replacement is now a routine procedure, which can reduce pain, improve mobility, and has a low risk of failure. The risk of death during the operation is less than 1 percent, and the risk of infection is similarly low. Included in the l-percent risk are clot formation in leg veins (clots can cause severe problems if they break off and pass through the heart to the lungs). Temporary urinary retention is found in 15 to 30 percent of patients. A major conference on the subject at the National Institutes of Health (NIH) concluded that hip replacement when done for incapacitating pain and dysfunction gives a predictably excellent result in the vast majority of patients (110). The same conference found that present technology results in 90 percent of devices remaining functional 10 years after surgery (110). The main complication of total hip replacement is loosening of the apparatus. Fracture of the device occurs in approximately 0.5 percent of cases. A search for improved cements to keep the devices in place, and development of devices that do not require cement (by allowing bone growth into the device) are underway (105). New technologies also may permit detection of loosening by detecting sounds of the device under stress (111). Surgical replacement of hips and other joints is effective, but expensive. It is estimated that $700 million was spent in 1979 for hip replacements alone, 59 percent of which was done to replace joints affected by osteoarthritis (103). The rising numbers of elderly in the U.S. population, especially of those who are very old, suggests a rapid increase in this total unless means of preventing osteoarthritis can be found. The potential for cost growth as more joint replacements are done is a topic of concern for health policymakers. There are large numbers of potential recipients, and as the technology advances, such surgery may well become more attractive to a larger proportion of those with osteoarthritis or osteoporosis, This raises the prospect of difficulty in establishing criteria for deciding who should be entitled to joint replacement, establishing publicly acceptable mechanisms for rationing or otherwise constraining access to joint replacement through Federal pro-
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l Technology and Aging in America grams, or continued cost escalation driven by demand. Osteotomy involves reshaping the bone to reduce stress, or to provide a more favorable anatomic orientation of the joint. It is now less commonly used because of the advent of total joint replacements. joint debridement is removal of unwanted tissue from the joint space, and can help when there is free cartilage or bone irritating the joint. Hip surface replacement is also being tried for some cases of arthritis, mainly in younger patients (106), POSSIBLE FUTURE DEVELOPMENTS Future prevention and therapy of osteoarthritis may include new drugs to promote cartilage growth and regeneration, production of growth factors and hormones through biotechnology, improved joint replacement, regrowth or replacement of joint surfaces, and development of devices to compensate for diminished function, Increased attention to this potentially large market by companies that produce devices could also greatly improve the functioning of arthritic individuals. Designers of chairs, stairways, beds, telephones, and computer keyboards are likely to adapt their designs for use by the growing numbers of those affected by arthritis. Development of smart technologies to assist in daily activities should prove highly marketable to this large subpopulation. Quackery A major problem in arthritis treatment is the proliferation of quack remedies and consumer fraud. The Consumers Union notes that quackery thrives best on human illnesses for which there is no cure (99). The persistent and unremitting symptoms of pain and stiffness also spur the search for remedy, or the promise of it. The large number of affected individuals encourages promoters to try to tap this potentially lucrative market. Both chronic discomfort and high prevalence contribute to the problem of quackery. Further, the episodic nature of the illness can breed personal anecdotes of successful treatments, when an individual happens to take action just at the time the symptoms are naturally subsiding. one additional factor can render arthritis victims vulnerable to the attractions of useless substances, devices, and procedures: the patients perception that traditional medicine has failed. This can be exacerbated by the frequent disparity between the patient own measure of discomfort and that acknowledged by medical practitioners. The Arthritis Foundation has variously estimated the amount spent on false or unproven remedies as $950,000 and $1.8 million (96,97). Quackery can take many forms: drugs; l chemical mixtures (often containing hormones); l diets; special clinics; l devices; and l therapeutic jewelry (e.g., copper bracelets, gold, etc.). Examples of useless or unproven remedies include DMSO, a common chemical solvent, which has been heavily promoted for relief of arthritic symptoms, despite a lack of verifiable effects. Copper bracelets were popular for a time, and one patently fraudulent device, the Vryllium Tube, consisted of $0.02 worth of salt and sold for $250. Special clinics in Mexico and the Dominican Republic have catered to the desperation of arthritis victims, and special diets and diet books can be found in profusion (99). The creative marketing techniques sometimes used by American drug companies, encourage unenlightened self-medication. Promoting agents to the public for relief of arthritis symptoms can lead to inaccurate self-diagnosis, and, in the words of a 1977 FDA panel, Consumers who self-treat with an over-the+ ounter pain reliever for these diseases, without first seeking medical attention, may be risking irreversible damage to joints and other tissues (99). Social factors As with any other chronic condition, optimal patient functioning relies not only on physiologic change and medical intervention but also on social variables and public policy:
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Ch. 3Selected Chronic Conditions, Technology, and Biomedical Research l 95 R is clear that patient motivation, patient comamong other factors, may be as important deterpliance, education level, socioeconomic status, minants of disability as are the biologic activity arrangement of health care resources in the of the disease or the extent to which that biologic community, payment mechanisms, public and activity may be controlled by medicinal agents patient education programs, and family support, (loo). Osteoporosis 10 Introduction Osteoporosis (porous bone) is a major chronic disorder of older people. It is defined as a condition in which total bone mass is decreased while bone volume is unchanged; therefore the density of the bone decreases. This thinning of the bone increases its fragility and makes it more susceptible to fracture. Activities and stresses that would not harm normal bone can result in fractures of osteoporotic bone. Loss of bone mass occurs in all people as they age, but the rate of loss is higher in women for about 10 years immediately following menopause, This period of rapid loss causes women to be especially subject to fractures and the secondary problems that ensue. This predisposition to fracture makes osteoporosis of significant importance to individuals over 40 and to the health care system. Magnitude of the clinical and social problem Osteoporosis is an important cause of morbidity and mortality in the elderly. It appears to be the underlying cause of about two-thirds of hip fractures in older people (132). The incidence of hip fractures due to osteoporosis was estimated to be 98 per 100)000 people in the United States in 1977 (130)132); their total annual cost (acute care only) was estimated to be about $800 million. The total cost of osteoporosis in the United States has been estimated at $3.8 billion annually, and osteoporosis affects 15 million to 20 million Americans (145)! Greater life expectancy and rising health care costs are expected to sharply increase the costs This section written by Sheila Taube, Ph .D as part of the ,XIH Grants ,Associates Training Program, related to hip fractures. The total number of patient days spent in general hospitals as a result of hip fractures now ranks 10th among conditions counted (131). Fractures of the wrist are also a problem in people with osteoporosis and can result from relatively minor stresses. Vertebral fractures are common; it is estimated that 25 percent of white women have at least one vertebral fracture by the age of 60 (122). Most of these fractures are compression fracturescrush fractures in which the vertebra simply collapses from the weight of maintaining the body in the upright position. Vertebral fractures often go unrecognized as fractures but may cause considerable pain. The pain frequently is not restricted to the area of the fracture, but can be felt in other areas, such as the abdomen. The immediate medical and surgical problems posed by these fractures frequently foreshadow a significant impact on the individuals lifestyle. A number of studies of patients who suffered hip fractures (117,122,125,131) indicate a 16to 40percent increase in mortality within the first year. Only about 50 percent of patients are likely to return to pre-fracture mobility; approximately onethird enter nursing homes and remain there permanently (127,129,131). Mortality rates related to hip fractures were found to be higher in older patients (over 80), males, and patients with dementia or confusion (131). Of those patients who were living at home prior to the fracture and ultimately returned home, about 20 percent had to spend some time in a nursing facility during the interim (127,131). This nursing care tends to incur considerable expense, which is generally not fully reimbursed by public or private health insurance. The social problems are also significant because the patient is separated from his or her friends, family, and regular activities, which can
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. Technology and Aging in America cause depression and other psychological problems. Direct costs of osteoporosis include diagnostic tests, drugs, surgery, prosthetic devices, physical therapy, long-term care, and social rehabilitation. The indirect costs include productivity decreases from lost labor and its impact on the gross national product, although most osteoporotic patients are older women who are no longer in the work force. Biology and physiology Bone consists of a soft protein framework that is hardened by deposition of calcium salts. It is a dynamic tissue that is constantly being remodeled (reshaped and renewed) throughout a persons life. Bones provide the skeletal structure for the body and also serve as a repository of minerals such as calcium, magnesium, phosphorus, and sodium, which are required for a variety of the bodys functions. This remodeling of bone is accomplished by simultaneous resorption (removal of structural components) and formation (redeposition). Any condition in which resorption exceeds formation results in decreased bone mass. Resorption and formation are usually tightly coupled so as to maintain bone structure and function. This coupling appears to be a localized phenomenon; the cells responsible for the resorption and formation processes are active in the same bone surface at the same time. The resorbing cells are called osteoclasts, and the forming cells are called osteoblasts. The two cell types together are considered to be a remodeling unit. Turnover of bone is high when there are many remodeling units present and low when there are few. The relative rates of activity of the two cell types determine whether there is net gain or loss of bone mass. An individuals total bone mass generally reaches a maximum in the second to fourth decade of life and then begins to decline, The initial rate of decline is the same for both men and women, about 0.5 percent per year. When women enter menopause, however, the rate of bone loss increases to 1.0 to 1.5 percent per year for about 10 years and then begins to slow again to a rate similar to that in men (138,141). The rate of bone loss differs for different parts of the skeleton (138). Bones most affected include the metacarpal (the bones between the wrist and the fingers), the neck of the femur (that part of the thigh bone which forms the hip), and the vertebrae. Different bones lose mass in different ways; bones of the spine are more prone to losing their internal structure, while those in the limbs become thin near the edges. The cause of age-related bone loss is not clear. It appears that the rate of resorption is increased, but it has been difficult to find a consistent cause underlying this increase. The metabolic interactions involved in bone turnover are complex, and normal function depends on a balance of calcium intake, absorption into the blood, deposition in bone, and excretion. These processes are controlled by hormones (particularly parathyroid and adrenocortical hormones) and by vitamin D and its derivatives. They are also affected by dietary components other than calcium, such as protein, phosphorus, fiber, and others. Specific parameters that have been examined have not provided consistent correlations between metabolic changes and increased bone loss. There has been no direct evidence that increases in parathyroid hormone levels associated with age are any greater in osteoporotic patients (120). There appears to be no relationship between the degree of bone loss and the age of onset of menopause (128). There have been no consistent changes in adrenocortical function documented in osteoporotic individuals, although suggestions have been made that subtle changes in function of the pituitary, adrenal, or gonadal glands might play a role in osteoporosis (128). Osteoporotic patients generally have lower body weight and less muscle mass than nonosteoporotic controls, but the significance of this observation is unclear (118,128). It is possible that tall thin people can less afford to lose bone mass than stockier people. Current research is directed toward a better understanding of the molecular aspects of bone remodeling, Growth factors have been identified that stimulate osteoblasts (the cells responsible for bone formation). Human skeletal growth factor, for example, may couple bone formation and resorption and may be involved in osteoporosis (144). Attempts are being made to define the cells
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Ch. 3Selected Chronic Conditions, Technology, and Biomedical Research 97 and molecules that affect activity of both the osteoblasts and the osteoclasts (135). With this knowledge, it may then be possible to manipulate the system to maintain the balance of activity necessary to prevent bone loss. Much of the current molecular research is on bone cells in culture, a technique only recently perfected; it will take time to relate findings in these experimental situations to events actually occurring in the body. Diagnosis The diagnosis of osteoporosis can present major difficulties. The diagnosis is made by exclusion; the doctor must determine that the patient has no other causes of bone loss, such as underlying metabolic disorders, metastatic cancer, malnutrition, or drug-induced disorders. The condition is frequently undiagnosed until a fracture occurs. Vertebral fractures are often detected by accident when a patient has an X-ray taken for some unrelated problem. Once fractures have occurred, examination usually reveals considerable bone loss. To make the diagnosis of osteoporosis, the physician must first exclude other possible causes of bone loss; if any specific disorders affecting bone are found, appropriate treatment is initiated. If no underlying cause is found, the condition is considered to be osteoporosis. In order to attempt to prevent fractures resulting from bone loss, it must be possible to detect this loss early and to measure the rate of loss. Standard radiographic procedures are not sensitive enough to detect the early stages of the disease because 30 to 40 percent of the bone must be lost before osteoporotic changes can be detected by these techniques. Nevertheless, films of the spine and hand can aid in the differential diagnosis of osteoporosis by identifying other diseases, and are sensitive enough to detect later stages of osteoporosis. The characteristic changes in vertebral osteoporosis that distinguish this disease from other bone diseases generally occur in the lower portion of the spinal column (below the sixth thoracic vertebra, at the midchest level). Changes seen higher in the spine are usually due to other causes, such as cancer, trauma, or infection. The particular vertebral shape changes are also characteristic of osteoporosis; for example, the vertebral bodies may become increasingly biconcave and wedge-shaped. Other shape changes indicate that other disorders may be present. Similarly, hand films can provide clues for differential diagnosis since changes seen can distinguish between osteoporosis and underlying hormonal imbalances (137). X-ray measurements are only useful once changes have occurred; a procedure that could detect very early losses and identify individuals at risk would be of far greater value. More sensitive methods for measuring bone density are being developed. Photon absorptiometry is a sophisticated method that employs a highly focused beam of light at one frequency to examine the total mass of bone in the path of the light. This technique is only useful for examining peripheral bones (in the arms and legs) and is not yet available at all medical centers. Dual photon absorptiometry, a modification of this technique, can be used to examine the spinal column but its availability is even more limited. Quantitative computerized axial tomography (CAT) scanning of the spine can be used to make careful density measurements of spinal bones, but is expensive and not widely used. All of these techniques are being improved in terms of precision and reduction of X-ray dose, but usefulness for routine screening must still be assessed. As yet there are no reliable markers in blood or urine that can be used to quantitate bone loss; some blood tests indicate metabolic disorders, but these do not measure the condition of specific bones. Treatment and prevention The ability to measure bone loss prior to fracture is likely to have important implications for prevention and treatment. The pattern of bone loss may provide physicians with clues concerning other underlying disorders as well as with prognostic information. Treatment of osteoporosis is complex primarily because it involves care of problems arising from the underlying bone loss, that is, fractures and their sequelae. As discussed earlier, hip fractures are a major occurrence; surgical repair of the fracture or replacement of the hip is required.
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98 Technology and Aging in America Surgical techniques and prosthetic devices have improved, and death rates now appear to correlate more with age and predisposing disease than with common complications of surgery such as infections and embolisms. Total hip replacement is sometimes required. Fractures and the necessary immobilization following surgery further complicate the osteoporosis because lack of exercise results in further bone resorption and predisposes the individual to formation of clots in blood vessels. Vertebral compression fractures cause pain, postural changes, and increased strain on the muscles of the torso. Treatment for pain and postural problems can include bed rest, analgesics, and orthopedic braces of various sorts. Bed rest must be balanced with a need for exercise because of the complications of immobility mentioned above, but rest may be necessary to remove the stress on the spine. Painkillers must be used carefully as well, because of side effects such as constipation and disorientation. orthopedic braces can be very uncomfortable, but they do relieve the pressure on the spine and permit somewhat more mobility. Younger patients tolerate the rigid supports better than older patients. There are exercises that can be performed safely to relieve pain, but these should include only extension exercises; flexion can cause more pain and may result in new fractures (140). A major treatment issue concerns the measures that can or should be taken to prevent further fractures once it is clear that clinical osteoporosis is present. Most studies indicate that Iost trabeculae of bone (the spiny meshwork inside the bone) cannot be replaced, but significant research is being performed to determine how to decrease the rate of bone resorption, As more information is gained concerning the normal metabolism of bone, attempts are being made to enhance bone formation or decrease resorption. These include use of mineral supplements, vitamin therapy, hormonal therapy, and exercise. Aside from wide acceptance of calcium supplements, few, if any, of the treatments are accepted universally as effective. This is because more definitive studies are required to prove cause-and-effect relationships, or efficacy of treatments (121). A consensus conference at NIH addressed the question of defining optimum treatment of osteoporosis in April 1984, and concluded that carefully monitored estrogen therapy, calcium supplementation, vitamin D administration or exposure to sunlight, and exercise are all potentially effective methods of treatment (145). Vitamin D increases both bone resorption and formation. Experience with this vitamin and its analogs (all involved in calcium and bone metabolism) is limited, and the studies are inconclusive. The best results have been obtained with an activated form of vitamin D, but levels must be monitored with care since too high a dose can increase bone resorption (150), In general, vitamin D should be used carefully because it is easy to attain toxic levels. Sodium fluoride (NaF) has been shown to increase bone mass, but the bone has unusual crystal structure and decreased elasticity. In addition, joint pain and severe gastrointestinal problems occur in as many as 50 percent of patients (139). Calcium supplements given with NaF result in more normal bone structure, but there are still side effects in one-third to one-half of patients, and it is not certain that the increased bone mass is associated with fewer fractures. A large clinical trial of NaF treatment is currently underway under sponsorship of NIH. Hormone treatments may also prove effective in treating osteoporosis. Preliminary studies using parathyroid hormone or its active fragment have not been encouraging; both resorption and deposition increased (136). Use of estrogen, a female sex hormone, has received a great deal of attention. Most researchers now agree that estrogen therapy for the first few years following menopause slows the rate of bone loss to that of men or premenopausal women. why female sex hormones affect bone physiology is not clear, Nevertheless, empirical studies support a consensus that low doses of estrogen are beneficial in terms of bone formation and resorption, and in preventing fractures of the hip, in the arm, and above 11Wh en given cyclically with progestins and periodic withdrawal of both hormones to allow bleeding, analogous to uses for contraception and menstrual regulation.
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Ch. 3SeLected Chronic Conditions, Technology, and Biomedical Research 99 the wrist. (124,133,149). When to terminate treatment has not been agreed upon, and the minimum effective dose is under investigation (123). Another controversy arises over the dangers of estrogen treatmentthe increased risks of both blood clotting and cancer of the lining of the uterus (endometrial carcinoma). For women who have had hysterectomies, estrogen therapy appears to be relatively safe because the risk of endometrial carcinoma is removed. A newly uncovered aspect of estrogen therapy, however, is encouraging; the overall mortality of women dying from all causes is lower for those treated w-ith estrogen than for those who are not (116). The questions about estrogen use as a routine measure in postmenopausal women cannot be answered without more long-term prospective studies. These studies are difficult to perform because women have to be followed over many years (perhaps as long as 20 or 30 years), and there are ethical questions as well. The relative risks and costs of osteoporosis and endometrial carcinoma have been compared (148), and it has been suggested that if osteoporosis is already present, the risks of further deterioration are greater than for endometrial carcinoma. Because the issue has not been resolved to everyones satisfaction, estrogen therapy has not been recommended as a regimen and its use is being evaluated on a case-by-case basis. FDA has, however, approved estrogen for treatment of osteoporosis at the physicians discretion, and carefully monitored estrogen therapy was recommended for white women at the NIH Consensus Conference (145). one recent finding may change treatments for osteoporosis. Thiazide diuretics, used in the treatment of heart failure and hypertensions, appear to be associated with reduced numbers of bone fractures among women taking them (147). Further investigation of this phenomenon may lead to a new strategy for treatment. Calcium intake and absorption are widely accepted as important in preventing osteoporosis (134). Calcium alone is considered effective in slowing bone resorption, but the amount of calcium in the diet decreases as people grow older because of changes in the foods they eat (121), In addition, absorption from the gut appears to decrease. The cause of this decrease is not clear, Increasing the intake of calcium does appear to increase the total amounts of absorption, and calcium is not toxic in the amounts necessary to provide adequate absorption (143). However, there are some contraindications to calcium supplements: decreased blood flow through kidney (diminishing kidney filtration rate), or hyperparathyroidism, but these conditions can be assessed prior to prescribing supplements. Proper calcium intake should be maintained as people age, and this may require supplementation of the normal diet. In order to achieve absorption of the recommended amount of calcium (800 to 1,000 mg per day), it is probably necessary to consume 1.5 to 2 times this amount (still within the safe limits). Active forms of vitamin D that enhance calcium absorption from the intestine are under investigation by the FDA, and may prove useful in preventing osteoporosis. Calcium may not be the only mineral involved in osteoporosis. Zinc deficiency has also recently been associated with osteoporosis, but its the link to the thinning of bone has not been established (115). Another critical element in maintaining bone health is exercise, specifically weight-bearing exercise. Bone mass decreases when physical activity is reduced. Studies of immobilized subjects have indicated that loss of bone begins very soon after immobilization, and on full bed-rest the calcium loss is about 200 to 300 mg per day (about one-fourth to one-third of the Recommended Dietary Allowance) (119). Exercise has been shown to increase bone mass in normal individuals during recovery from immobilization (146) and in women after menopause (114, 142). Once osteoporosis has been diagnosed, the exercise program should be carefully designed to avoid stress to fragile bones. Although this discussion has concentrated on treatment efforts aimed at further reducing bone loss and fractures once osteoporosis has been diagnosed, some comments also apply to prevention of the disease. Studies to date suggest that bone mass must be built and maintained prior to the fifth decade of life and that the greater the bone mass at its peak, the more the individual can afford to lose before the bone becomes subject
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.. l Technology and Aging in America to fracture (121). Women especially should be sure to eat calcium-rich foods and to carefully assess their diets to assure proper calcium intake. 12 Nutrition is a complex science, and calcium absorption and excretion are affected by other components of the diet such as protein (high protein increases calcium excretion) and fiber [effects are not clearly understood yet) so that an individuals entire diet must be analyzed to assure proper nutrition. It is also important for women to maintain muscle and bone mass through regular exercise. The NIH Consensus Conference recommended that women take 1,000 to 1,500 mg calcium daily, starting well before menopause (145). To determine the extent to which age-related bone loss can be retarded by calcium supplementation, studies must be performed over a period of time that is long enough to permit accurate rates of loss to be calculated. Studies are needed to assess calcium absorption under different conditions, i.e., high concentrations of calcium, effects of other nutrients, etc. Prospective longitudinal studies are required to establish a firm relationship between calcium nutrition in early life and development of peak bone mass as well as the relationship between peak bone mass and later susceptibility to fracture. The longitudinal 12 Wood sources of calcium in food are dairy products, and vegetables such as parsley, soybeans, and spinach. For those who cannot tolerate milk easily, yogurt is an acceptable substitute. Calcium supplements are readily available as over-the-wounter products, studies necessary to prove cause and effect are almost impossible to carry out because of the long time span over which observations and measurements must be made. However, some of the necessary evaluations could be included in ongoing longitudinal studies such as the Baltimore Longitudinal Study on Aging. One longitudinal study, sponsored by NIH, started in 1967. Those in the study are just now entering the age of susceptibility to osteoporosis. Because the various methods of preventing or treating osteoporosis have not been rigorously compared for relative efficacy (126), there is a clear need for randomized clinical trials. Summary Osteoporosis affects a significant number of elderly individuals. The morbidity and mortality associated with fractures are costly in terms of hospital care, long-term care, and rehabilitation, and the social costs to the individual and his or her family are substantial, although they cannot be precisely measured. Although research on bone physiology suggests the availability of preventive measures and treatments to those who are susceptible to osteoporosis, most prevention methods still require confirmation by research. Earlier diagnosis is considered important to a better prognosis, and such new technologies as photon absorptiometry make earlier diagnosis possible. Policy for basic biomedical research Provision of health care for the increased numbers of older individuals in American society will involve activity in many sectors: prevention of disease, promotion of health, good nutrition, delivery of health care, diagnosis and treatment of diseases, and research into all of these. This section focuses on that segment of the Federal Governments activity related to biomedical research. In light of the aging of the American population, those diseases that are more common in the elderly will affect a higher proportion of the total population, Research on aging and diseases that affect older people will therefore become progressively more important, and funds expended in this area are likely to benefit more individuals. The Federal Government devotes 27 percent of its funds to services for older citizens and disburses $53.5 billion for Medicare and Medicaid, the two largest health care programs for older Americans (154). In the most recent inventory of Federal research specifically on aging (but not including all research on diseases common in older people), a task force found Federal spending for biomed-
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Ch. 3Selected Chronic Conditions, Technology, and Biomedical Research 101 ical research on aging was $177 million in 1980 13 (163). The agency supporting the largest amount of research on aging was the National Institute on Aging (NIA), which spent $42.3 million, or 24 percent of the total. These figures do not, however, include all research on such disorders prevalent among the older population as stroke, atherosclerosis, or arthritis. In terms of other disorders, such as dementia, NIA has taken the lead. Research figures on the diseases for which most research is performed at institutes other than NIA would significantly expand the totals. Precise figures cannot be given because surveying research on diseases important to the elderly population would entail making difficult judgments about which diseases to include, and would necessitate another, much larger, inventory effort. It is clear, however, based on research expenditures compared to health care costs, cited in other sections of this chapter, that research on several chronic conditions of older Americans is relatively neglected. Federal research expenditures on Alzheimer disease, for example, total less than $40 million, compared to $8 billion to $10 billion Federal outlays for acute and long-term care, and roughly equal contributions from private sources. While there is no complete accounting of the resources devoted to research on all diseases of importance to the older American population, it is possible to make rough estimates of the relative Federal costs of health care and biomedical research for the total population. In 1982, costs of health care were $322 billion nationwide, accounting for 10.5 percent of the gross national product. In this same year, estimated total Federal and non-Federal funding for health research and development was $9.2 billion, or 2.9 percent of total spending on health care. Appropriations for the National Institutes of Health (NIH) were $3.6 billion, or 1.1 percent of the total spending for health care nationwide. NIH sponsors the vast majority of federally sponsored biomedical re13 This inventory was done primarilv bv computer search of abstracts for aging-related terms. This procedure would miss many basic science and clinical projects relevant to diseases highly prevalent in the older population that not did not include such terms, search (comprising 37 percent of all health research, and 69 percent of Federal support for overall biomedical research). An approximate figure for relative Federal spending for health care v. biomedical research might thus be estimated by comparing NIH funding to spending for federally funded health care through the two largest programs, Medicare and Medicaid. In 1982, these two health programs disbursed $83 billion from Federal sources. The NIH budget would constitute 4.4 percent of this total (see fig. 16). Federal funding for biomedical research has remained fairly constant in real dollars over the past decade, but has declined as a proportion of health care costs from 3.9 percent in 1972 to 2.9 percent in 1982. Funding for biomedical research has also failed to keep pace with overall trends in research and development: the proportion of dollars going to biomedical v. other types of research declined from 12.4 percent in 1972 to 11.7 percent in 1982. The proportion of funding for health research provided by the Federal Government declined from its 1977-79 peak of 41 percent of all health research support to 36 percent in 1982, and is now approximately the same as the Federal share a decade ago (when it was also 36 percent) (see fig. 17). There is no method of determining an optimal level of Federal spending for biomedical research overall or even for a particular disease or class of diseases. There is no competitive market that can establish an equilibrium among spending for prevention, diagnosis, treatment, delivery, and research. In the absence of such a self-correcting mechanism, decisions about the relative levels of support are made administratively, based on a calculus of mixed economic, biological, ethical, medical, and political considerations. Congressional role in supporting research on aging The growth of biomedical research in the United States has depended on action by Congress to authorize and fund the Federal agencies responsible for performing and coordinating research, especially at NIH, The NIH budget has grown from $48,000 in 1933 to $55 million in 1953 to $4.3 billion in 1984. This growth has oc-
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. 102 l Technology and Aging in America Figure 16. National Health R&D, 1972 and 1982, as Related to Total R&D Cost and Total Health Cost Total R&D Cost 1972 $28.5 billion Health R&D $3.5 (12.40/o) > Health R&D) $9.2 (11.7%) Total Health Cost Health R&13 $3.5 (3.9%) National Expenditures for Health, Total R&D, and Health R&D, 1971-81 1972 est. 1982 $317.0 billion est. -Health R&D $9.2 (2.90/o) SOURCE NSF and NIH SOURCE HCFA, with adjustments of R&D (and theretore of totals) to conform to NIH data curred as a consequence of wide acceptance among congressional leaders of the importance of biomedical research. In 1974, Congress created a new institute at NIH, the National Institute on Aging, for the conduct and support of biomedical, social, and behavioral research and training related to the aging process and the diseases and other special problems and needs of the aged (Public Law 93-296). NIA has taken a clear lead in research on some disorders. For example, it supports the largest effort on Alzheimer disease and dementia. NIA obligated $9.3 million out of a total of $22.3 million spent on Alzheimer disease in fiscal year 1983. This proportion will further expand with the substantial increase of funds designated for research on Alzheimer disease and related disorders in fiscal year 1984 ($36.4 million to $37.8 million). NIA was intended to focus its efforts on the disorders and problems of older Americans. NIA coordinates research among the various institutes, and incorporates biological and social science research into a national research plan on aging. NIA has convened panels of experts to formulate planning for national research on aging. Their most recent report entitled, A National Plan for Research on Aging (165), has played a pivotal role in determining current research priorities. Congress has supported growth at NIA over the past decade. The appropriations figures itemized below show the rise in funding for NIA. Although these figures have not been adjusted for inflation, they do show an increase in the proportion of NIH funding devoted to aging research. But because NIA remains the second smallest of the institutes, the increase at NIA has little proportionate impact on overall NIH funding allocation. (For example, the 1983 appropriation of $91.6 million for NIA compares with $595.7 million for the National Heart, Lung, and Blood Institute (NHLBI) and $962.6 million for the National Cancer Institute.) Appropriations for the National Institute on Aging (millions of dollars) Fiscal year 1976 . . . . . ... .$ 19.3 Fiscal year 1977 . . . . . . 30.0 Fiscal year 1978 . . . . . . 37.3 Fiscal year 1979 . . . . . . 56.9 Fiscal year 1980 . . . . . . 70.0 Fiscal year 1981 . . . . . . 75.6 Fiscal year 1982 . . . . . . 81.9 Fiscal year 1983 . . . . . . 91.6 Fiscal year 1984 . . . . . . 112,3 SOURCE Fiscal years 1976-82 NIH Data Book, NIH publication No 83.1261, final year 1983 and 1984 Congressional Record H 8445, Oct 20, 1983
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Ch. 3Selected Chronic Conditions, Technology, and Biomedical Research 103 Figure 17.National Support for Health R&D by Source, 1972-83 (Dollars in Millions) $11,000 10,000 9,000 8,000 7,000 [ Totals m current and constant (1972) dollars 6,000 0 $5,107 5,000 $4,443 $4,701 11 % 11% 12 % 4,000 $3,536 $3,750 13% 28 % 29 % 3,000 13% 270/ 0 26 % 28 % 20 % 20 % 2,000 23 % 25 % 24% 1,000 3696 35% 39 % 40% 40% $5,606 10% 29 % 20 % 41 % 1972 1973 1974 1975 1976 1977 $6,268 10 % 290/ 0 20% 41% 1978 $7,117 10% 19% 4 % 1979 $8,529 $7,899 9% t 9% 34% 31% 20% 18% 40 % 39 % 1980 1981 prel $10$341 $9,214 9% Other 90/ 0 39% Industry 370/ 0 Other Federal 17% 37% 36% NIH 1982 1983 est proj a Constant dollars based on biomedical R&D price Index 1972 982 Projected to 2260 for 1983, based on percentage Increase In estimated GNP implicit price deflator SOURCE: National Institutes of Health (164). NHLBI provides most of the support for research on cardiovascular and respiratory diseases, disorders that are responsible for most deaths among older populations. The National Institute of Arthritis, Diabetes, and Digestive and Kidney Diseases (NIADDK) expends most of the funds that support work on arthritis and osteoporosis, conditions that are major causes of disability among the elderly. The National Cancer Institute funds research on cancer, one of the most feared killers of older Americans, Reasons for supporting biomedical research on aging HEALTH AS A JUSTIFICATION FOR BIOMEDICAL RESEARCH The most compelling reason for supporting biomedical research is the future health of the American population. Investment in research now is a means of conferring improved health on present and future Americans, and providing information for use by all populations in the world. The primary product of research is information that is freely available to allthat is exclusive to no particular group. This aspect of research places it in a category economists call public goods. For example, a successful treatment of arthritis would improve society as a whole by decreasing demand for social services, and by improving the quality of life of countless individuals who cannot now be identified. Much as we all benefit from free access to information about weather, we are all better off for knowing how to prevent ill health. Most biomedical research is funded by the Federal Government because market mechanisms cannot serve to adequately allocate resources to long-term research. Market mechanisms fail, in part, because of both the high degree of uncertainty associated with basic research and the general applicability of many research results (a company does not gain relative advantage from investment if all companies can apply the results of its research). Progress in research is most rapid when there are many groups investigating closely related topics, and when research information is freely disseminated, another
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l Tecnologh and Aging in America reason that private corporations cannot support research as easily as the public sector. An individual companys incentive to invest in research is reduced to the extent that it cannot control its use and dissemination: wide dissemination yields greater research efficiency overall, but provides less direct benefit to the sponsoring company. Further, no single company can support a research program large enough to assure a balanced program of research in large scientific areas. Since World War II, the Federal Government has adopted the responsibility for supporting basic biomedical research because of this absence of an adequate market mechanism. The main justification for basic biomedical research is future reduction of mortality and morbidity. Reduced illness can reduce overall health care costs through: l l l l l l l l l more effective prevention; reduction in the severity of disability leading to increased productivity; prolongation of productive life span; improved diagnosis allowing more specific treatment or prevention; reduction in the cost of a particular disorder (e.g., poliovirus vaccine reduced the need for supportive therapy of the victims of poliomyelitis); improved function in individuals permitting less use of medical care (e.g., treatment of cardiovascular illness permitting patients to remain at work, while also improving their quality of life); replacement of expensive treatment by a cheaper form (e.g., replacement of some surgery by new drugs for peptic ulcer disease, or replacement of coronary bypass surgery by drugs or catheter surgery); reduction in the number of useless therapies, incorrect diagnoses, or errors in treatment; and improved delivery of services. Historical analysis suggests that each of these justifications for biomedical research can be supported in particular instances. Research can also, however, increase health care costs through: l increased life span leading to a longer period of incurring health care costs for any particular condition; increased life span leading to acquisition of more disabilities; replacement of a lesser health cost with a greater health cost (e.g., those who would have died from polio have lived long enough to develop arthritis, coronary artery disease, and dementia 14 ); discovery of new treatment modalities (e.g., new treatments for disorders that would previously have gone untreated, such as drug treatments for certain cancers); discovery of new methods of diagnosis (thereby incurring increased costs required to confirm or eliminate treatment alternatives); development of more complex therapy (e.g., multiple drug therapy for cancer in place of a single drug); requirement of testing for effective prevention (e.g., requiring a laboratory test for monitoring drug treatments); increasing medical errors by making diagnosis, treatment, or prevention more complex; or increasing the complexity of health care provision, thus requiring new capital outlays, new types of service providers, and more specialized education. Basic biomedical research does not, therefore, necessarily lead to savings on health care costs in all cases. The goal of biomedical research is health, not parsimony. Federal investment in biomedical research can assure future generations of improved health, but reduction in the cost of health care is not guaranteed. Even improved health is not guaranteed, although it becomes increasingly probable as more resources are devoted to biomedical research. ECONOMIC JUSTIFICATIONS FOR BIOMEDICAL RESEARCH Future Savings in Health Care Costs. While the most widely accepted reason to support biomedical research is the promise of better health in the future, there are also economic 14 Prevetion of polio, therefore, may actually increase lifetime health care costs for any particular individual. However, those who would have died of polio would also have been prevented from contributing to society. Premature mortality, conversely, may actually reduce health care costs but increase overall costs to society. Dead people cost less, but neither can they contribute.
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Ch. 3Selected Chronic Conditions, Technology, and Biomedical Research l 105 arguments for supporting basic biomedical research. In addition to the possible savings in health care costs for some technologies, several other economic results can follow from progress in biomedical research. Restoration of health can also permit a return to normal life, including contributing to economic or industrial productivity. Many studies of cost/ benefit analysis relating to health take this factor into account. In the case of many older Americans, however, many of their activities are not included in standard economic calculations of productivity because they are retired. In such cases, cost/benefit analysis may underestimate the total benefits to society. Further, if the human capital approach of calculating lost wages were to be rigorously applied to health care resource allocation and research priority setting, resources would be preferentially assigned to younger working populations. Industrial Applications.-One of the most exciting new developments in industry is biotechnology, The new biological technologies promise to become an important part of the international economy (161). The new industrial techniques comprising biotechnology all grew from biomedical research. Applications of biomedical research have thus spun off into the fields of environmental protection, food production, food processing, energy production, and even submarine detection. Such industrial changes constitute national returns on investment in biomedical research. These alone might provide sufficient justification for the investment, and at least provide additional reasons for funding basic research at the national level. The health care industry is one of the largest in the United States, accounting for 10.5 percent of the gross national product. The health industry is highly labor-intensive, employing large numbers of service workers. Health care is one economic sector promising to produce many new jobs in the coming decades. one important force driving the growth in health care is new biological and medical knowledge. New knowledge has led to new technologies for enhancing health and for industrial production. Examples of industries based, at least in part, on knowledge derived from biomedical research include pharmaceuticals, diagnostic device manufacture, hospital equipment production and distribution, and new biotechnology firms. Those employed include scientists, technicians, physicians, nurses, pharmacists, educators, social workers, administrators, and government regulators. REASONS FOR SUPPORTING RESEARCH SPECIFICALLY ON AGING NIA was created in response to a need perceived by Congress to focus research specifically on aging. This perception arose from the demographic pressures of anticipated growth in the older American population, the potential increase in health costs due to increasing numbers of chronically ill persons in this population, and neglect of research on aging (Public Law 93-296). Several functions distinguish research on aging from other biomedical and social science research. Older individuals have biological characteristics that differ from younger cohorts. Examples cited in this report include their special susceptibility to side effects of drugs, increased incidence of particular disorders, and vulnerability to concurrent diseases and multiple organ failure. Older people are also more likely to suffer functional impairments for those conditions that they have, and are thus more vulnerable to limitations on their independence. The reasons underlying the reduction in functional reserve 15 that occurs in many organs are not known, and the fundamental processes that cause the phenomenon of aging are not understood. The primary goal of research on aging is resolution of these problems. Resource allocation: who decides what Congress determines funding levels for NIH and other research agencies through its budget process. As part of this process, decisions must be made about: l how much research money is devoted to research overall; 15 Functional reserve is the ability of a tissue or organ to respond to new stresses without affecting the individual. A good example is the hearts response to vigorous exercise that diminishes with age.
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106 l Technology and Aging in America l l l l l how many resources are given to biomedical v. other varieties of research; allocation among the various institutes; division within the institutes into intramural or extramural research (that done at NIH or elsewhere); division into basic research and clinical research; duration of support for each grant; division within the institutes into programs for disease groups or scientific areas; and allocation among research projects, training, investigator grants, institutional grants, clinical projects, technology transfer, development of applications, public information dissemination, and special activities. Congressional debate about proper mechanisms for funding of biomedical research has intensified in recent years. Concerns have been expressed about how to properly allocate funds, how to organize research, and how to determine how much research should be in basic science and how much devoted to other activities (e.g., promoting development of new treatments, supporting clinical trials of new drugs or treatments, or disseminating information about health). CRITERIA FOR ALLOCATION DECISIONS There are at least four important determinants of successful biomedical research. Each of these is advocated by different groups in support of funding for a particular area of science or focused on a particular disease or group of disorders. Scientific opportunity is important in productivity of any research. one cannot successfully study even the most important health problems if there are no scientific techniques with which to address the relevant questions. The study of bone diseases, for example, was inhibited until recently by the absence of tissue culture methods for studying bone and cartilage cells. Study of Alzheimer disease is still hampered by absence of an adequate animal disease model. In some instances, such scientific roadblocks can be creatively circumvented; in other cases, the barriers resist scientific inquiry. Scientists can, for example, develop new instruments or tests that permit information-gathering directly from affected patients (e.g., noninvasive new technologies for visualizing the living human brain), but cannot deliberately cause Alzheimer disease in animals or laboratory cells in order to study it. The process of peer review by scientists has arisen to measure the scientific validity of individual grants or programs, thus promoting efficiency in research. Peer review is by no means flawless; studies have shown that there may be a substantial factor of luck and reviewer bias in some methods of peer review (162). Eliminating the peer review process would, however, sacrifice evaluation of factors that are not attributable to luck. Peer review might be improved, but is unlikely to be replaced, because there appears to be no other effective means of identifying scientific priorities. Personnel and environment are also essential. Those doing the research must be properly trained, have access to necessary equipment, and have an environment of support from peers. In several areas there is a shortage of personnel trained to do research on a particular topic, which makes research less robust than it could be. Few medical researchers are trained to do computer research, for example, and still fewer Federal sources of fellowship provide support for training them. Many of the arguments in favor of functional assessment and prevention initiatives, cited in chapters 4 and 7, presuppose training and support of new researchers in these areas. The environment for doing the research must provide needed support services and an intellectual atmosphere conducive to productive enquiry. Evaluation of both the adequacy of institutional support and aptitude of the individual researchers is another aspect of peer review. One important reason for sponsoring intramural research at NIH and for the support of centers of excellence is the enhanced productivity achieved by concentrating groups of researchers close to one another. For example, it is not uncommon at many major research universities to find ready exchange of ideas at seminars, lectures, and through informal laboratory interchanges. This rapid and easy diffusion of ideas causes spread of new techniques into diverse fields, proliferation of approaches to scientific questions, and intensification and broadening of research training. There is thus a critical mass
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Ch. 3Selected Chronic Conditions, Technology, and Biomedical Research 107 phenomenon associated with biomedical research: it is most productive where there is a sufficient number of highly qualified scientists available to exchange ideas. Not all research, however, is conducted at major research universities. Some scientists are more productive when left on their own, and many important ideas arise from those who take a completely fresh approach to a scientific problem, without being restrained by the ideas of those around them. There are different research styles, just as there are different styles of management. Importance of solving a problem is a factor in allocating resources for research. Those problems that cause the most social disruption, the greatest number of deaths, or the highest levels of disability are those that society most wishes to solve. The burden of illness can be measured by numbers of people affected, severity of disability, public fear of developing a disorder, and untoward social and health effects associated with a given disorder. For example, cardiovascular diseases are the most frequent causes of mortality among the elderly; the severe symptoms of stroke and dementia cause distress for the patient and his or her family; arthritis causes chronic pain for a vast number of individuals, but kills few; and the prospect of cancer provokes widespread fear. Each of these aspects of disease bears on the political and administrative calculus of deciding how to distribute research dollars. Recent congressional debate has focused on how best to organize distribution of funds to NIH, Some prefer distributing funds along scientific lines (for research in neurobiology, metabolism, genetics, or for basic cell biology), while others favor increasing the focus on particular diseases or disease groups. Duration of grant support: the length of time a research project is supported affects how science is performed. Shorter periods of grant support permit greater flexibility of resource allocation at the national level because long-term grants obligate funds in future years that cannot be redirected to new projects. Shorter grants also, however, require scientists to apply for funds more often, thus detracting from their primary function of investigation. Short-term grants also increase the paperwork associated with research support because of the necessity of filing more grant applications during the same period than would be needed for long-term commitments. Long-term grants also permit more stable assurance for research personnel and stable development of coordinated research programs. Decisions about grant duration at the national level thus balance the advantages of flexible yearly research priority assessment against the need to provide stable and reliable support for scientific investigation. SPECIFIC CONGRESSIONAL INVOLVEMENT IN BIOMEDICAL RESEARCH Congress creates new research institutions, annually authorizes and appropriates funding for research, and has control over some aspects of how funding is allocated. Congress makes decisions about resource allocation at three levels: l Congress determines how much total funding to set aside for all biomedical research at the Federal level. l Congress may also choose to play a role in allocating funds among the various institutes 16 l Congress may also ensure execution of particular projects or research plans. The level of congressional involvement varies from allocating money to be used at the discretion of the Secretary of Health and Human Services (usuall y delegated to the Director of NIH) to specific funding for particular types of grants. Specific congressional involvement differs among disease groups, scientific areas, and executive institutions that support research. There have been historical variations in the intensity and specificity of congressional action. Examples of general actions include creation of the NIH and the larger institutes. Less general was the creation of NIA, which was intended to encourage research in an area of perceived neglect. Specific actions are common in support of particular diseases or disease groups. For example, there were several proposals for research specifically on Alzheimer dis 16 ongress must specifically authorize and fund the ,National Cancer Institute and the ,National Heart, Lung, and Blood Institute because of the character of the legislation that created these two largest institutes at NIH. Other institutes are authorized under an umbrella authorization that provides spending authority if authorization has not passed Congress,
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708 Technology and Aging in America ease in the most recent session of Congress. Decisions about congressional involvement in determining research priorities involves debate about the criteria named earlier: scientific opportunity, personnel, and social importance. It also involves judgments about the administrative costs of particular actions, and who is best able to decide questions of a particular type. In general, Congress is best at ascertaining the social and personal costs of a particular problem, while scientists, through the peer review process, are expert in assessing scientific validity. Congress can direct resources to important problems, and scientists can emphasize the importance of using the tools available. Judgments about proper allocation of resource funding are thus political in that they can involve resolution of sometimes conflicting contentions. There may often be no one right answer. When there is only one right answer, it may not be possible to identify it. The present system of allocating research funds incorporates the tension between the expertise of scientists, who assess scientific opportunity and research priority in a given area, and Congress, which establishes overall funding and general research priorities. EXAMPLE OF CONGRESSIONAL POLICY DEBATE: A PROPOSED ARTHRITIS INSTITUTE A prominent example of congressional debate about research policy surrounds creation of a new institute for the study of arthritis and musculoskeletal disorders, which was under consideration as this report was written (151,152, 158,160). Those opposed to creation of a new institute cite increased administrative costs that would detract from money available for basic research (such costs are estimated by the Office of the Director of NIH at $4 million) (156) and express concern that proliferation of the number of institutes at NIH will make the organization difficult to manage. Those in favor of creating a new institute assert that research on arthritis is relatively neglected, and the presence of a new institute would focus scientific attention on this severe medical and social problem and facilitate efforts to garner support for arthritis research in Congress (thus increasing total funding for research, rather than merely reallocating funds from other areas) (159). Proponents of the arthritis institute point out that spending is 22 times higher per affected patient for cancer research and 12 times higher for heart research than for arthritis research (153). By these same criteria, however, mental illness could be considered even more underfunded than arthritis, yet the presence of a National Institute of Mental Health (NIMH) has not remedied this. Some believe, in this context, that funding for NIMH would have been greater if NIMH had not been separated from NIH in the late 1960s (155). Differences here center on whether creating an institute at NIH in fact attracts increased resources for the topics investigated at that institute. The historical analysis in the upcoming Institute of Medicine study of the NIH (see below) may provide information that can contribute to resolving this issue. Within the field of arthritis research, there is debate about the current distribution of funding. Some aver that funding is now too focused on immunology and away from basic cartilage and bone research. They advocate increasing research on the major causes of disability of osteoporosis and osteoarthritis with less emphasis on rheumatic arthritis and immunological disorders. Others counter that scientific opportunities in bone and cartilage research are restrained by the absence of adequate scientific methods and shortage of trained researchers in this area. They point out that research on immunological mechanisms has been extremely productive, and should continue to be so. Those favoring research on osteoarthritis counter that the productivity of immunological research is due to availability of Federal funding for it, and that bone and cartilage research would have been equally productive if it had been as well supported over the last decade. Such debates highlight the difficulties of allocating funding in the absence of a natural market. Targeting of research on particular diseases emphasizes the importance of the problems to be addressed, while targeting on particular methods of scientific approach or organ system stresses scientific opportunity. In most cases, these values do not conflict, but when they do, there are usually good arguments on both sides of the debate.
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Ch. 3Selected Chronic Conditions, Technology, and Biomedical Research l 109 Congress is then forced to make an administrative decision fraught with a high degree of uncertainty. High levels of spending for heart and cancer research arose from congressional action and concerted public efforts persistently pursued since the 1950s. The present high level of scientific achievement in these fields and the industrial spinoffs (biotechnology and medical technology) of such research are the beneficial effects of more than two decades of committed Federal support. Whether creation of an institute for the study of arthritis and musculoskeletal disorders will achieve its goals of scientific excellence and amelioration of disability may depend as much on the consistency of support from Congress over the next decade as on the establishment of a new institutional home for musculoskeletal research. The status of a new institute for the study of arthritis, musculoskeletal, and skin diseases is uncertain as this assessment is written. The Senate and House of Representatives of the 98th Congress passed S. 540 authorizing the creation of such an institute, but the bill was vetoed by President Reagan on october 30, 1984. ANOTHER EXAMPLE: PROGRAMS FOR PREVENTION RESEARCH AND EDUCATION Concern that research on disease prevention and health promotion has been relatively neglected prompted Congress to mandate Associate Directors for Prevention Research at the National Cancer Institute, National Institute on Child Health and Human Development, and the Office of the NIH Directopr, in addition to the one already in place at the National Heart, Lung, and Blood Institute. The function of these new offices would have been to assure that research on prevention, health-promoting behavior, epidemiology, and disease causation was given high priority at the respective institutes. In addition, passage of S. 771 authorized a revision and extension of the Office of Health Promotion and Disease Prevention of the Public Health Service. The bill included provisions to create a network of centers for health promotion and disease prevention, The centers were to perform basic applied research in preventive health. The bill contained authorization sufficient to support 13 center grants in fiscal years 1985, 1986, and 1987, The arguments for this new legislation in the structure of NIH were similar in type, although different in detail from those urging establishment of the arthritis institute. These other health research bills were also vetoed on October 30, 1984. ORGANIZATION OF THE NATIONAL INSTITUTES OF HEALTH: IOM STUDY The proposed institute on arthritis is only one of many changes in NIH debated over the past decade. As a result of this debate, the organization of the National Institutes of Health is being studied by the Institute of Medicine (IOM). The results of this study, The Organizational Structure of the National Institutes of Health, wa s released on November 15, 1984. The study focused on criteria for creation of institutes, how to support solid basic science, and how to best respond to medical needs and social burdens (157). The study has three components: l l l a historical review of how institutes were formed, how association with or dissociation from NIH has affected different institutes, and how institutes have split or had new functions added to existing institutes; a survey of the current organization of NIH, including how priorities are set and a review of potential additions to NIH, and review of proposed alternative organizational structures; and an analysis of alternative means of organizing NIH, including criteria for goal setting, decisionmaking, priority setting, and budget authority.
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110 l Technology and Aging in America Conclusion The prevalence of major chronic diseases is expected to rise over the next decade. If current trends continue, dementia, hearing impairments, urinary incontinence, osteoporosis, and osteoarthritis will continue to increase in incidence and prevalence as the population ages and as the average age at death continues to rise. Effective treatment for prevention of these disorders is needed, and adaptation of technology to compensate for the ravages of chronic disabilities will be more and more in demand in the future. For conditions that may be ameliorated by existing technologies, such as hearing impairment and incontinence, application of such technologies is a priority. Research on chronic diseases, however, provides the only possibility for ultimately eliminating them. Congressional issues and options regarding basic biomedical research Support for basic biomedical research is growing rapidly. It has resulted in the creation and growing budget of the National Institute on Aging and support of research in other NIH institutes and Federal agencies on diseases prevalent among the older population. Such research has not, however, attained the status or level of support enjoyed by other groups of disorders, such as cancer or heart disease. Increasing efforts by private citizen organizations such as the Alzheimer Disease and Related Disorders Association and the Arthritis Foundation have begun to change this, encouraging Federal policymakers to invest more research dollars in studying the diseases that cause severe disability among older Americans. Such increases in funding can be achieved by diverting funds from other areas of basic biomedical research, by increasing total funding for biomedical research, or by a combination of these strategies. Issue 1: Should Congress increase support for basic and clinical biomedical research on aging? Options: 1.1; 1.2: Congress could continue present levels of support for aging research. Congress could increase support for basic biomedical research on aging by devoting a larger share of the NIH budget to it. 1.3: Congress could increase support for basic biomedical research on aging by devoting more overall Federal funds to it. Some believe that present levels of funding for aging research are adequate, and that devoting increased funds to this area could detract from research now going on in other areas. Others believe that the growing proportion of the older segment of the American population will necessitate a commensurate increase in knowledge about the biology of aging and about conditions highly prevalent in older Americans. If Congress chooses to support more research on aging, it can take one of three general courses: either increase the overall NIH budget, earmarking more funding for aging, increase the proportion of the NIH budget devoted to aging research, or a combination (the combination would conform to recent trends). Issue 2: Should Congress exercise more con= trol over the direction of basic biomedical research? Options: 2,1: Congress could delegate major decisions regarding biomedical research to the Director of NIH, the Public Health Service, and the Department of Health and Human Services. 2.2: Congress could increase its level of involvement in selected areas, such as general aging research,
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Ch. 3Selected Chronic Conditions, Technology, and Biomedical Research 111 2.3: creation of new institutes, and mandating new programs. Congress could increase its level of involvement by changing the methods of authorizing and appropriating funds for NIH. Examples of option 2.2 would include the proposed new institute on arthritis and musculoskeletal disorders, new centers of excellence for Alzheimer disease, earmarking of funds for particular types of disease-oriented research, and mandating programs for disease prevention and health promotion. Examples of 2.3, involving regular reauthorization and appropriation of each institute and increased oversight of institute programs, were at the heart of debate about the original version of H.R. 2350 in 1983, before a compromise was reached with competing bills. The basic arguments were those noted above in the discussion about the specificity of congressional involvement in basic research policy and in the discussion about the proposed arthritis institute. Increased congressional involvement in research policy would tend to favor more sensitivity to the needs of diseaseariented interest groups, which may represent the needs of their constituents; leaving administrative decisions to the present NIH hierarchy favors attention to scientific opportunity as assessed by peer review. Chapter 3 references Dementia 1. Appel, S. H., Alzheimer Disease and Dementia)) Neurol. Clin. 4:3-11, 1982. 2. Ball, M. J., Alzheimer Disease, Arch. Pathol. Lab. Med. 106:157-162, ]982. 3. Beck, J. C., et al., Dementia in the Elderly, the Silent Epidemic, Annals. Int. Med. 97:231-241, 1982. 4. Brody, J. A., An Epidemiologist Views Senile DementiaFacts and Fragments, Amer. J. of Epidem. 115:155-162, 1982. 5. Cook, R. H., Ward, B .E., and Austin, J. H., Studies in Aging of the Brain, IV: Familial Alzheimer DiseaseRelation to Transmissible Dementia, Aneuploidy, and Microtubular Defects) Neurol. 29:1402-1412, 1979. 6. Cowel], D. D., Senile Dementia of the Alzheimer Type: A Costly Problem, ~. Am. Geriat. Soc. 31:61, ]982. 7. Coyle, J. T., Price, D. L., and DeLong, M., Brain Mechanisms in Alzheimer Disease, Hosp. Pract. 17:55-63, 1982. 8. Dunn, A. J., Neurochemistry of Learning and Memory, Annu. Rev. Psychol. 31:343-390, 1980. 9. Folstein, M. F., and Breitner, J. C. S., Language Disorder Predicts Familial Alzheimer Disease, Johns Hopkins Med. J. 149:145-147, 1981. 10. Gajdusek, D. C., Unconventional Viruses and the Origin and Disappearance of Kuru, Nobel Lecture, Dec. 13, ]976. 11. Gibbs, C. J., Virus-Induced Subacute Degenerative Diseases of the Central Nervous System, Ophthalmolo~ 87:1208-1218, 1980. ha. Harbaugh, R. E., Roberts, D. W., Coombs, D. W., et al., Preliminary Report: Intracranial Cholinergic Drug Infusion in Patients With Alzheimers Disease, Neurosurgery 15:514-518, 1984. 12. Hokfelt, T., et al., Peptidergic Neurones, Nature 284:515-521, 1980. 13. Housman, D. E., and Gusella, J. F., Molecular Genetic Approaches to Neural Degenerative Disorders, Molecular Genetic Neuroscience (New York: Raven Press, 1982), pp. 415-434. 14. Hyden, H., and Egyhazi, E., Nuclear RNA Changes During a Learning Experiment in Rats, Proc. Nat. Acad. Sci. 48:1366-1373, 1962. 15. Iversen, L. L., Nicoll, R. A., and Vale, W., Neurobiology of Peptides, Neurosci. lles. Prog. Bull. 16:211-370, 1978. 16. Iversen, L. L., Neurotransmitter Interactions in the Substantial Nigra: A Model for Local Circuits, The Neuroscience: Fourth Study Program, F. O. Schmitt and F. G. Worden (eds.) (Cambridge, MA: MIT Press, 1979). 17. Katzman, R., The Prevalence and Malignancy of Alzheimer Disease, Arch. Neurol. 33:217-218, 1976. 18. Kety, S. S., Neurochemical and Genetic Bases of Psychopathology: Current Status, Behav. Genet. 12:93-100, 1982.
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Ch. 3Se/ected Chronic Conditions, Technology, and Biomedical Research 115 1064 107. 108. 109. 110. 111. 112. 113. Conference on Arthritis, Airlie House, VA, July 19-22, 1983. Moskowitz R., Management of Osteoarthritis, Bui]. Rheum. Dis. 31:31-35, 1981. OConnor, G. T,, and Olmstead, E. M., Agreement Between Clinical Judgment, Patients Assessment and Responses to Functional Health Status Questionnaire, paper presented at the San Antonio Meeting of the American Rheumatology Association, June 1-4, 1983. Palmoski, M. J., and Brandt, K. D., In Vivo Effect of Aspirin on Canine Osteoarthritis Cartilage) Arthritis & Rheumatism 26:994-1001, August 1983. Shrier, R. W., and Henrich, W. L., Nonsteroidal Anti-Inflammatory Drugs: Caution Still Indicated, J. Am. Med. Assoc. 251:1301, 1984. National Institute of Arthritis, Diabetes, and Digestive and Kidney Diseases, Office for Medical Applications of Research (OMAR), National Institutes of Health, USDHHS, Total Hip Joint Replacement, Consensus Development Conference Summary, No. 4, 1982. U.S. Department of Health and Human Services, National Institute of Arthritis, Diabetes, and Digestive and Kidney Diseases, National Institutes of Health, Arthritis, Rheumatic Diseases, and Related Disorders, Special Report to Congress, 1981. U.S. Department of Health and Human Services, National Center for Health Statistics, Basic Data on Arthritis: Knee, Hip, and Sacroiliac Joints in Adults Ages 25-74, 2971-1975, USDHEW publication No. (PHS) 79-1661, series 11, No. 213, 1979. Wright, V., Mobility in the Elderly: The Problem of Arthritis, Current Med. Res. and Opin. 7, Suppl. 1:28-32, 1982. osteoporosis 114. 115. 116. 117. 118. Aloia, J. F., Exercise and Skeletal Health. J. Am. Geriat. Soc. 29:104-107, 1981. Atik, O. S., Zinc and Senile Osteoporosis, J. Am. Geriat. Soc. pp. 790-791, December 1983. Bush, T. L., Cowan, L. D., Barrett-Connor, E., et al., Estrogen Use and AllCause Mortality, J. Am. Med. Assoc. 249:903-906, 1983. Crane, J. G., and Kernek, C. B., Mortality Associated With Hip Fractures in a Single Geriatric Hospital and Residential Health Facility: A TenYear Review, J. Amer. Ger. Soc. 31:472-475, 1983. Dequeker, J., Goris, P., and Uytterhoeven, R., osteoporosis and osteoarthritis (Osteoarthrosis): Anthropomorphic Distinctions, J. Am. Med. /%wc. 249:1448-1451, 1983. 119. Donaldson, C. L., Hulley, S. B., Vogel, J. M., et al., Effect of Prolonged Bed Rest on Bone Mineral, Metabolism 19:1071-1084, 1970. 120. Gallagher, T. C., Riggs, B. L., Jerpbak, C. M., and Arnand, C, D., The Effect of Age on Serum Immunoreactive Parathyroid Hormone in Normal and Osteoporotic Women, J. Lab. Clin. Med. 95:373-85, 1980. 121. Heaney, R. P., Gallagher, J. C., Johnston, C. C., Neer, R., et al., ( Calcium Nutrition and Bone Health in the Elderly )Amer. .1. Clin. Nut. 36:9861013, 1982. 122. Heaney, R. P., Estrogens and Postmenopausal Osteoporosis, Clin. Obstet. GynecoZ. 19:791-803, 1976, 123. Horsman, A., Jones, M., Francis, R., and Nordin, C., The Effect of Estrogen Dose on Postmenopausal Bone Loss, N. Engl. J. Med. 309:1405-1407, 1983. 124. Hutchinson, T. A., Polansky, S. M., and Feinstein, A. R., Post-Menopausal Oestrogens Protect Against Fractures of Hip and Distal Radius: A CaseControl Study, Lancet 2:705-709, 1979. 125. Jensen, J. S,, and Tondevold, E., Mortality After Hip Fractures) orthop. Scand. 50:161, 1979. 126. Kanis, J. A., Treatment of Osteoporotic Fracture, Lancet 7:27-33, January 1984. 127. Keene, J. S., and Anderson, C. A., Hip Fractures in the Elderly: Discharge Predictions With a Functional Rating Scale, J. Am. Med. Assoc. 248:564567, 1982, 128. Krane, S, M., Metabolic Bone Disease, Harrisonk Principles of Internal Medicine, 8th cd., G. W. Thorn, R. D. Adams, E. Braunwald, K. J. Isslebacher, and R. G. Petersdorf (eds.) (New York: McGraw-Hill, 1977), pp. 2028-2037. 129. Lawton, J. O ., Baker, M. R., and Dickson, R. A., Femoral Neck FracturesTwo Populations, Lancet 9:70-72, July 1983. 130. Lewinnek, G. E., Kelsey, J., White, A. A., III, and Krieger, N. J., (The Significance of a Comparative Analysis of the Epidemiology of Hip Fractures, C]in. Orthopedics. Rel. Res. 152:35-43, 1980. 131. Miller, C. W., Survival and Ambulation Following Hip Fracture, J. Bone& Joint Surg. 60-A:930934, 1978. 132. Owen, R. A., Melton, L. J., III, Gallagher, J. C., and 133 Riggs, B. L., Hip Fractures Associated With Osteoporosis) C/in, Orthopedics. ReZ. Res. 150: 172176, 1980. Paganini-Hill, A., Ross, R. K., Gerkins, V. R., et al., ( Menopausal Estrogen Therapy and Hip Fractures, Ann. Intern. Med. 95:28-31, 1981.
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116 l Technology and Aging in America 134. Parfitt, A. M., Dietary Risk Factors for AgeRelated Bone Loss and Fractures, Lancet 2:11811184, November 1983. 135. Raisz, L. G., Osteoporosis, ~. Amer. Geriat. Soc. 30:127-138, 1982. 136. Reeve, J., Hesp, R., Williams, D., et al., Anabolic 137, 138. 139, 140, 141. 142. 143. 144. Effect of Low Doses of a Fragment of Human Parathyroid Hormone on the Skeleton in Postmenopausal Osteoporosis, Lancet 1:1035-1038, 1976. Resnick, N., and Kantrowitz, F. G., Senile Osteoporosis, Arch. Int. Med. in press, 1983. Riggs, B. L., Wahner, H. W., Dunn, W. L., Magess, R. B., et al., Differential Changes in Bone Mineral Density of AppendicuIar and Axial Skeleton With Aging, J. Clin. Invest. 67:328-335, 1981. Riggs, B. L., Hodgson, S. F., Hoffman, D. L., et al., Treatment of Primary Osteoporosis With Fluoride and Calcium, J. Am. Med. Assoc. 243:446449, 1980. Sinaki, M., Postmenopausal Spinal Osteoporosis Physical Therapy and Rehabilitation Principles, Mayo C]in. Proc. 57:699-703, 1982. Smith, D. M., Khairi, M. R. A., Norton, J., and Johnston, C. C., Jr., Age and Activity Effects on Rate of Bone Mineral Loss,J. C]in. Invest. 58:716721, 1976. Smith, E. L., Reddan, W., and Smith, P. E., Physical Activity and Calcium Modalities for Bone Mineral Increase in Aged Women, Med. Sci. Sports Exercise 13:60-64, 1981. U.S. Department of Health and Human Services, Food and Drug Administration, Report on Over the Counter Preparations, Fed. Reg. 44:1617516178, 1979. U.S. Department of Health and Human Services, National Institute of Arthritis, Diabetes, and Digestive and Kidney Diseases, Arthritis, Rheumatic Diseases and Related Disorders, Special Report to Congress, 1982. 145. Office of Medical Applications of Research, National Institutes of Health, U.S. Department of Health and Human Services, osteoporosis, Consensus Development Conference Statement, vol. 5, No. 3, 1984. 146, Vogel, J. M., and Whittle, M. W., Bone-Mineral Content Changes in the Skylab Astronauts, Amer. Jour. Rheumato], 126:96-97, 1976. 147, Wasnich, R. D., Benfante, R. F., Yano, K., et al., Thiazide Effect on the Mineral Content of Bone, N. Engl. J. Med. 309:344, 1983. 148. Weinstein, M. C., Estrogen Use in Postmenopausal Women-Costs, Risks, and Benefits, N. Engl. J. Med. 303:308-316, 1980. 149. Weiss, W. S., Ure, C. L., Ballard, J. H., et al., De150 creased Risk of Fractures of the Hip and Lower Forearm With Postmenopausal Use of Estrogen, N. Engl. J. Med. 303:1195-1198, 1980. Whedon, G. D., Recent Advances in Management of Osteoporosis, Phosphate and Mine;afs in Health and Disease, S. G. Massry, E. Rity, and H. John (eds.) (New York: Plenum Press, 1980). Biomedical research policy 151. 152. 153. 154. 155. 156. 157. 158. 159. Arthritis Foundation, policy statement, 1983. Arthritis Foundation, policy statement, 1982. Arthritis Foundation, Annual Report, 1982. Borzilleri, T., The Graying of the Federal Budget: Income and Expenditures of the Elderly, prepared under contract for the Office of Technology Assessment, October 1983. Goodwin, F., Address to Institute for Alternative Futures, April 1983. Salans, L. B., Response to a Question, Departments of Labor, Health and Human Serwces, Education, and Related Agencies: Appropriations for 1984, 1983. Stoto, M., Study Director, Institute of Medicine, National Academy of Sciences, December 1983. Sun, M., A New Arthritis Institute Nears Approval, Science 217:610-612, 1982, Sun, M., Mary Laskers Latest Pet Project, Science 217:611, 1982. 160. U.S. Congress, House debate on H. R. 2350, Nov. 17, 1983. 161. U.S. Congress, Office of Technology Assessment, Commercial Biotechnolo~: An International Analysis, OTA-BA-218, January 1984. 162. U.S. Congress, Office of Technology Assessment, Appendix B: Grants, Contracts, and Peer Review on NSF Grants) Technology Transfer at the Na tional Institutes of Heakh-A Techmcal Memoran dum, OTA-TM-H-lO, March 1982, 163. U.S. Department of Health and Human Services, Inventory of Federally Supported Research on Aging, Administrative Document, March 1982. 164. U.S. Department of Health and Human Services, Public Health Service, National Institutes of Health, Office of Program Planning and Evaluation and Division of Research Grants, NIFl Data Book, 1983, NIH publication No. 83-1261, June 1983. 165, U.S. Department of Health and Human Services, Public Health Service, National Institutes of Health, National Institute on Aging, Toward an Independent Old Age: A National Plan for Research on Aging, NIH publication No. 82-2453, September 1982.
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Chapter 4 Health Promotion/Disease Prevention and Nutrition in the Elderly
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Contents Page Introduction . . . . . . . . . . . . . . . 119 Contents Of Prevention . . . . . . . . . . . . . 120 Definitions and Wellness and Functional Dependence . . . . . . . 120 Morbidity and Mortality . . . . . . . . . . . . . 121 Risk Factors . . . . . . . . . . . . . . . 121 Risk Factors Associated With Coronary Heart Diease and Stroke . . . . 122 Risk Factors Associated With Cancer . . . . . ..., . . . 125 Risk Factors Associated With Fractures . . . . . . . . 126 Risk Factors Associated With Sensory Loss . . . . . . . . . 127 Risk Factors Associated With Dental Disease . . . . . . . . 128 Nutritional Deficiencies. . . . . . . . ,. . . . . . 128 Conclusions . . . . . . . . . . . . . . . 129 Congressional Issues and Options . ., . . . . . . . . . 130 Technical Memorandum ..., . . . . . . . . . ., . . 133 Chaper 4 References . . . . . . . . . . . . ., . 133
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Chapter 4 Health Promotion./Disease Prevention and Nutrition in the Elderly Introduction People are living longer, and an increasing body of evidence is demonstrating that preventive measures begun early in life and maintained throughout life can significantly reduce the prevalence of acute and/or chronic diseases in old age. These measures include diet modification, regular exercise, smoking avoidance, and periodic medical screening, especially for blood pressure and cancer. At the same time, because of increases in life expectancy during the last 50 years, a generation of persons is growing up with the knowledge that if they practice healthy life behaviors, they are likely to live 70 or more years. Efforts to extend knowledge of behaviors that promote health and prevent crippling and chronic disease at older ages are thus becoming more important. Behavior alone cannot ensure longevity; however, the social and economic context is extremely important. People who cannot afford nourishing food, adequate housing, and essential medical care cannot live healthy lifestyles even if they know how to do so. Because the focus of this study is the elderly, this chapter primarily treats preventive measures for persons 65 or more years of age. This is done, however, in full recognition of the importance of prevention throughout life. Until recently there was consensus among health professionals, and among the elderly themselves, that after 65 it was too late to think seriously about prevention of disease or disability. For example, a 65-year-old would already have sustained too much lung damage through excessive smoking to justify quitting, or atherosclerosis would have progressed too far to make it worthwhile to undertake exercise and dietary modifications that might reverse the condition. These attitudes are slowly changing, and health promotion is now justified for several reasons: l l l l l l increasing life expectancy after 65 (half of those who reach 65 will live to be at least 80); more sophisticated definitions of health that recognize variability among and between age groups; better understanding of the importance of chronic disease and disability as major threats to health in the elderly and of the relationships between chronic disease and preventable risks; the recent improvement in cardiovascular disease mortality due in part to preventive efforts (e.g., control of hypertension); the desire of many older people to continue working (73 percent of persons over 65 would prefer to continue some kind of parttime work if they could (this percentage drops significantly for full-time work and for persons over 75) (26); and growing uncertainty about Social Security and pension plans that reinforces the desire to stay healthy and continue to work. In implementing health promotion strategies, both the efficacy and goals of the intervention and the time in the life cycle are important, The efficacy of prevention is often difficult to demonstrate because of the problem of measuring the nonoccurrence of events (19). Preventive steps should be taken early in life in order to show effect in old age; this long time lag makes proving causality difficult. Also, many efficacious programs can increase functional independence or decrease chronic disease incidence; these parameters are more difficult to measure than death rate changes. For people who are ill, the goal of health promotion/disease prevention is to maximize function and prevent deterioration, while for those who are well the goal is the prevention of disease or disability irrespective of age. The goals of risk prevention are quite different for 119
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120 Technology and Aging in America a 50-year-old than they are for an 80-year-old, and to promote the maximum functional independare further complicated by the overall health of ence of which the individual is capable. the individual. At any age, however, the goal is Types of prevention Prevention is usually divided into three components: primary, secondary, and tertiary. Primary prevention refers to preventing the occurrence of disease or injury. Secondary prevention refers to early detection and intervention, preferably before the condition is clinically apparent. The aim of secondary prevention is to reverse, halt, or at least retard the worsening of a condition. Tertiary prevention refers to minimizing the effects of existing disease and disability by surveillance and maintenance designed to prevent complications and premature deterioration (21). This traditional taxonomy is difficult to apply to specific cases and fits poorly into the chronic disease situations that characterize the elderly. A condition may be both a preventable disease (a problem on its own) and a precursor (risk factor) to a subsequent condition. For example, falls are not only common in older age groups but also constitute a risk factor for hip fracture. Hypertension is a medical condition that should be treated because it is a risk factor for stroke, heart disease, and kidney disease. When primary prevention of hypertension (e.g., control through diet modification) succeeds, it becomes tertiary prevention; control of hypertension is, in turn, a primary prevention strategy for stroke and arteriosclerosis (19). Control of diet (weight) is primary prevention for diabetes, which is, in turn, a risk factor for arteriosclerosis and stroke. And reducing arteriosclerosis can lower the incidence of stroke. Thus a particular risk factor can be a primary, secondary, or tertiary risk factor, depending on the disease. Definitions of wellness and functional dependence Of Americans 65 and over, more than half (56 percent) perceive their health to be excellent or good (26). More than 60 percent of adults 18 to 64 and more than 70 percent of those over 65 believe that health status has improved for older Americans. (This improvement may be associated with the evidence of increases in life expectancy. See Appendix A: Morbidity and Mortality.) Despite disagreement as to the validity of these selfratings, there is evidence that they are useful measures of health status. Objective definitions of wellness or health are, however, difficult to develop. The World Health Organization defines health as (a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity. Providers and scientists interested in health promotion/disease prevention have found this definition difficult to follow in practice. The linkage of functional dependence with health promotion provides a more fruitful approach. Functional dependence is defined as the inability to attend to ones own needs, which generally include the basic activities of daily living: walking, eating, personal hygiene, shopping, dressing, laundry, meal preparation, paying bills, and recreational and social activities. Dependence may result from changes that accompany natural aging, but is more likely a correlate of disease or a related pathological condition. Dependence can often be prevented, reversed, or reduced (14). Several measures for assessing the degree of functional independence of the elderly have been
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Ch. 4Health Promotion/Disease Prevention and Nutrition in the Elderly l 121 developed. The older Americans Resources and Services (OARS) assessment battery yields information on five functional activity areas. Another approach uses both clinical and epidemiologic criteria to specify health goals and professional services appropriate for 10 different age groups from Morbidity and mortality Todays leading causes of deathboth in the general population and among those over 65 are diseases of the heart, malignant neoplasms (cancer), and cerebrovascular disease (stroke). As noted in chapter 2, these three conditions accounted for three out of every four deaths among the elderly in 1981. Death rates for stroke among the elderly decreased more rapidly during the past 30 years than those for heart disease, especially since the early 1970s, when stroke mortality fell sharply. Death rates for heart disease, which are also falling, showed a rapid decline between 1968 and 1978. In contrast, death rates for some cancers are rising, especially for cancer of the respiratory tract, and in men, genital and colon cancer. Overall cancer mortality among elderly Risk factors A risk factor is a characteristic that can identify an individual as having an increased likelihood of developing a given condition. Risk factors are based on statistical probabilities in populations rather than on causal relationships or the certainty that an individual will develop a specific disease or condition. Nevertheless, knowing the risks associated with particular diseases can provide an opportunity for disease prevention or reduction. Appropriate interventions are not possible without knowledge of risks. Some risk factors can be modified, while others are intrinsic to an individual. For example, personal habits and body weight can be changed, but age and genetic characteristics cannot. In certain circumstances, the effects birth to 75 years and over. A third method stresses functional independence defined from activities of daily living scales. These assessment measures are discussed further in chapters 7 and 9 and in the Technical Memorandum at the end of this chapter. women actually fell slightly between 1950 and 1978, but the incidence of lung cancer in women is rising. The incidence of other leading causes of death such as pneumonia, influenza, arteriosclerosis, hypertension, and diabetes mellitus has fallen in recent years. Although the incidence of many of these killers has decreased, their prevalence has risen because the elderly are now more likely to survive stroke and coronary heart disease. The level of chronic disease in the elderly population is therefore rising. Because this burden of morbidity in the population is growing, it is important to examine the risk factors that are correlated with these diseases and chronic conditions. of changeable characteristics become irreversible. Excess weight, for example, may be changeable at any age, yet the effects of obesity on risk of heart disease may be unchangeable at a given point. Unfortunately, the relationship between risk and specific interventions to reduce risk has not yet been well researched in the elderly, but enough is known about the effectiveness of certain prevention strategies to argue for their implementation. The choice of which risk factors to modify should, in part, be made on philosophical and ethical bases. Because the cost of morbidity (especially chronic disease in the elderly), both in human suffering and economic terms, is an area of growing concern, another approach to health promo-
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122 l Technology and Aging in America tion is to assess which risks, if reduced, are most likely to significantly reduce human suffering and medical costs. Risk factors associated with coronary heart disease and stroke A number of risk factors correlate with both coronary heart disease (CHD) and stroke. One group, underlying physical conditions, includes hypertension, high levels of cholesterol, and impaired glucose tolerance. Another type, behavioral risk factors, includes smoking, lack of exercise, poor diet, and stress. Despite the lack of a direct cause-and effect relationship between risk factors and CHD or stroke, it is clear that the risk of a coronary event increases exponentially as the number of risk factors increases (37). HYPERTENSION High blood pressure is the most powerful predictor of risk for CHD; more than half of persons with myocardial infarction and three-fourths of persons with stroke have concurrent hypertension. There is a strong association between increasing blood pressure and advancing age: 33 percent of persons in their 6@ have elevated pressure, compared with 11 percent of those in their 30s (19). Hypertension in the elderly is defined as blood pressure greater than 140/90 mmHg, or systolic blood pressure greater than 160 with normal diastolic blood pressure. Although persons over 75 are often underrepresented or excluded from research, limited findings indicate that control of moderate and high diastolic hypertension is also associated with reduced mortality and morbidity from CHD and stroke. Isolated systolic hypertension (systolic pressure above 160 mmHg accompanied by diastolic pressure below 90 mmHg), which is found in 25 to 30 percent of persons over 75, is correlated with a twofold to threefold increase in mortality from CHD and stroke. The benefits of treatment are still under investigation; if therapy proves to be efficacious, treatment of this condition may reduce death rates or prevent these two diseases (33). SMOKING Cigarette smoking plays a significant role in mortality from cardiovascular disease. It is a significant factor in morbidity, exacerbating hypertension, which, in turn, is a risk factor for cardiovascular disease and stroke. Nevertheless, the elderly and persons working with and for them appear to share the belief that smoking cessation efforts are primarily of concern and importance to younger age groups (25). This is a false assumption for several reasons: l l l l Many elderly people live more than 10 and often 20 to 25 years beyond age 65. Many benefits of smoking cessation, such as increased pulmonary function, are experienced immediately, and others, such as reduced risk for lung cancer, begin as few as 2 years after smoking cessation. Increased life expectancy of the elderly thus justifies efforts to promote smoking cessation programs. Nicotine constricts blood vessels, thereby raising blood pressure (which is already elevated, on average, in older groups). For many elderly persons, elimination of smoking can effectively reduce their risk of stroke, which is the third leading cause of death for those over 65. Respiratory function can be improved immediately, even in patients with emphysema. Improvements in breathing are enhanced if a medically supervised program of moderate exercise is coupled with smoking cessation. Smoking reduces the ability to taste food. Because loss of this ability contributes to poor nutrition in the elderly, smoking can exacerbate poor eating habits. Notwithstanding these cogent reasons for smoking cessation, most nonsmoking programs and research on smoking cessation are targeted to persons in younger age groups. Although these programs are important because of the great benefits of smoking cessation at younger ages, they should be expanded to give greater emphasis to their impact on the elderly. EXERCISE Although some research has shown an association, a definitive and direct link between physical exercise and reduction in risk of CHD and
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Ch. 4Health Promotion/Disease Prevention and Nutrition in the Elderly 123 stroke has not been established. In addition, because research subjects have typically been younger men, evidence is still lacking for women and the elderly. Despite gaps in knowledge of the benefits of exercise for the elderly in reduction of risk of CHD and stroke, several things are known about the effects of exercise that warrant implementation of moderate exercise programs. Regular exercise: increases lean body mass and reduces body fat (this effect has been associated with reduced CHD and diabetes in older persons); increases glucose tolerance (reduces the occurrence of diabetes or improves the functioning of those who are diabetic, a risk factor for CHD); increases the strength and speed of contractility in the heart muscle; increases oxygen uptake from the blood into the heart and skeletal muscles; and decreases heart rate and demand on the heart during rest. Since exercise reduces other CHD and stroke risk factors, programs that encourage exercise in all age groups are important. Exercise can reduce the emotional tension associated with various diseases. In a study of men 50 and over, a 15-minute walk reduced neuromuscular tension more effectively than a dose of tranquilizer (10,11,12,17). Exercise also reduces other CHD risk factors. It increases the proportion of high density lipoproteins (HDLs) relative to low-density lipoproteins (LDLs), but the effect is temporary; exercise must be performed at least every other day to maintain the reduction in LDLs and triglycerides. Blood-pressure reduction is more likely to occur in individuals with moderately elevated blood pressure and more likely to affect diastolic than systolic blood pressure. Enforced physical inactivity results in increased systolic blood pressure, increased total peripheral resistance, increased Iiigh-densit) lipoproteins ha~e two important functions: 1 ) they coat the inside of the artery walls and provide a protectiIre layer to pretent fatty deposits from twikiing up; 2) they help dissohe fattj. deposits when they occur, Lo\ldensitjr lipoproteins are responsi~e to dietary habits and form dangerous deposits on the walls of blood tessels; 1,D1,s are the primarj culprits in clogg(?d arteries anci atherosclerosis Thus the risk of (;HD is reduced if the proportion of HDLs to LflLs is relati\7el~r high. Photo credit: Paul Conklin, Dancers of the Third Age, Dance Exchange, Washington, DC Carefully developed exercise programs can benefit adults of all ages. serum levels of cholesterol, and glucose intolerance, all of which are, in turn, risk factors for CHD. Notwithstanding its beneficial aspects, exercise can have certain risks. Risks and complications depend on a number of factorsthe general health of the individual, past exercise habits, and age, as well as type, amount, and intensity of exercise. However, most authorities agree that the majority of adults under 65 do not need prior physical examinations before beginning a carefully developed, progressive exercise program. When weighed against the hazards of not exercising, the benefits clearly outweigh any risks (15). STRESS Stress is a normal part of life, but the inability to cope with it can cause health impairment. Two simple techniques, meditation and relaxation, can 38-800 0 85 5
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124 Technology and Aging in America reduce the physical and psychological effects of stress. Meditation techniques have been found to reduce blood pressure and residual muscle tension and increase oxygen intake. There is an impressive body of research to substantiate the beneficial effects of relaxation training. These include reduction of elevated blood pressure, heart rate, and gastric motility, increased cardiac output and respiratory efficiency, and aerations in brain-wave patterns (increased ratio of alpha waves to beta waves in EEGs) (25). NUTRITION Poor nutrition can be characterized by a lack of essential vitamins and nutrients, leading to deficiencies, or by an overabundance of certain nutrients that can be associated with higher risk for diabetes and high levels of cholesterol, both of which are risk factors for CHD and stroke. obesity (usually defined as greater than 20 percent over standardized tables of ideal weight for age and height) is associated with increased risk of hypertension, high cholesterol, and glucose intolerance. It is not clear, however, whether the risk factor is current obesity or a history of chronic obesity. If a longstanding history of obesity is shown to be correlated with CHD, an intervention program in the elderly might not be useful because the effects of the earlier obesity would be irreversible. Diets low in saturated fats and high in vegetables and fiber are recommended for prevention of CHD. These diets can reduce blood pressure in normal subjects (31,32), but whether the incidence of CHD is reduced is unclear (19). Per capita consumption of foods high in cholesterol and saturated fats has decreased since the early 1960s, while consumption of foods high in unsaturated fats and fiber, like fish and vegetables, has increased (38). This change in dietary habits may have contributed to the recent drop in serum cholesterol levels and perhaps to declining CHD mortality. Large doses of the B vitamin, niacin, may reduce blood lipid levels (9) and seem to be helpful in reducing recurrent nonfatal myocardial infarction (7) $ 2Myocardia1 infarction is death of tissue in the heart muscle due to insufficient delivery of blood or oxygen, usually due to obstruction of a blood vessel. High sodium intake has long been associated with high blood pressure (8), but there is as yet no conclusive evidence for a causal link. A recent epidemiological study of over 10)000 individuals aged 18 to 74 found that significant decreases in the consumption of calcium, potassium, vitamin A, and vitamin C were the nutritional characteristics that distinguished hypertensive individuals from those with normal blood pressure (24). Low calcium intake was most consistently correlated with hypertension. While these results do not prove causal effects, they do suggest directions for future research. DIABETES AND IMPAIRED GLUCOSE TOLERANCE Impaired glucose tolerance has been implicated as a risk factor for cardiovascular disease because of the high incidence of vascular complications in persons with diabetes mellitus. Fasting levels of blood glucose and the prevalence of adult-onset noninsulindependent diabetes rise with age. This change in blood glucose homeostasis is due in part to the age-related decrease of metabolically active lean body mass accompanied by an increase in fatty tissues. Because of these age-related changes, Williams (39) estimates that more than half of the population over 70 would be diagnosed as having diabetes according to the criteria used to evaluate younger adults in the oral glucose tolerance test. Standards for younger persons thus cannot be universally applied to the elderly. Obesity is strongly correlated with impaired glucose tolerance: 80 percent of adult-onset diabetics are obese or have a history of obesity, and 60 percent of persons with 125 pement or more of ideal body weight have impaired glucose tolerance tests. Dietary guidelines developed by the American Diabetes Association (2) focus on the restriction of caloric intake and moderate increase in energy expenditure, Because diabetics have two to three times the risk of dying from atherosclerotic CHD as nondiabetics (3), a reduction in total and saturated fat calories is also recommended, and drug or insulin treatment may be necessary to reduce glucose levels. The efficacy of this treatment in the prevention of CHD is not proven, but trends suggest a favorable prognosis with longterm management of diabetes (19).
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Ch. 4Health Promotion/Disease Prevention and Nutrition in the Elderly l 125 CHOLESTEROL The link between lowered cholesterol levels and CHD became definitive only recently, although large studies have shown a consistent association between the intake of foods high in saturated fats and both the level of serum cholesterol and morbidity and mortality rates for atherosclerotic diseases. The National Heart, Lung, and Blood Institute confirmed this link in a study in which men 35 to 59 with very high levels of cholesterol were given drug therapy to reduce cholesterol. The incidence of CHD was significantly reduced in the men given the drug (37). REHABILITATION Rehabilitation or tertiary prevention after CHD usually includes exercise regimens with drugs, stress reduction, and various other techniques undertaken to prevent the recurrence of heart attacks. Research in these areas often excludes the elderly. The benefits of intensive rehabilitation after CHD are less well substantiated than the benefits of rehabilitation after stroke. Interventions to minimize the effects of stroke and help patients to function independently are very important. The mean survival time after the occurrence of stroke is 7 years; 30 percent of patients survive 11 or more years. Results from the Framingham study indicate that following stroke, 33 percent remain dependent for activities of daily living, 20 percent require assistance with walking, and 15 percent require institutionalization. The remaining 35 percent are functionally independent. This level of functional disability is a significant drain on resources, both public and private. Intensive rehabilitation after stroke is neither effective nor beneficial for all patients. Those who are unconscious during acute stroke are likely to remain dependent, while those who remain conscious and are able to walk unaided immediately after the stroke generally exhibit spontaneous functional recovery. Rehabilitation in a specialized stroke unit results in greater functional recovery; 52 percent of such patients exhibited functional independence as opposed to 32 percent of patients given traditional rehabilitation on the medical wards, and did so in a shorter period Photo credit: Suburban Hospital, Bethesda, MD Medically monitored physical activities are one form of rehabilitation or tertiary prevention. of time (average stay of 55 v. 75 days). The patients selected for this study had remained conscious during acute stroke, but exhibited developing or established hemiplegia (paralysis of one side of the body); they represent patients likely to survive but unlikely to recover spontaneously. Thus, the degree of impairment from stroke is a useful criterion for patient grouping. In addition to functional improvement, there are psychosocial! and quality-of-life benefits (19). Risk factors associated with cancer Cancer is the second leading cause of death among the elderly. Several risk factors have been identified. For example, 30 percent of all cancer deaths may be attributed to smoking (13). Although it is not possible to accurately quantify the role of diet in cancer, 40 percent of cancer deaths among women and 57 percent of those among men may be associated with diet (13,27). There are synergistic effects between smoking and alcohol, but the effect of tobacco is far more important. Mortality from cancer of the cervix is decreasing, largely due to increased periodic screening with Pap smears. Cancers of the breast, ovaries, and endometrium account for 29 percent of all female cancer mortality (13 percent of total mortality).
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126 Technology and Aging in America Lung, colorectal, and prostate cancers are the most prevalent cancers among men; women are more at risk for breast, lung, and colorectal cancer, respectively. some cancer death rates for elderly men have continued to increase, but the increase in rates for elderly women is a more recent phenomenon. This is especially true of lung cancer rates for women, probably due to the higher prevalence of smokers among women of recent generations, And although the incidence of cervical cancer has declined in the general population, it has not declined in women past menopause. Because older women may not visit gynecologists for regular checkups, primary care physicians should screen for cancer or, at least, refer women to gynecologists for evaluation (19). Several types of cancers can be treated successfully if detected early enough. These include prostate (periodic physical exam), and breast and colon (discussion follows). Some evidence indicates a reluctance among the elderly to seek screening services or diagnosis; this is especially true of women who are at increasing risk of breast, cervical, and uterine cancer with advancing age. Some of this reluctance is due to misinformation about the possibilities for effective treatment. BREAST Breast sel-examination is an effective, inexpensive way to increase the chance of early detection of breast cancer; 80 to 90 percent of primary breast cancers are detected by women themselves (19). The few self-examination programs that exist have concentrated on easy-to-reach populations, usually in work settings, leaving the relatively high-risk woman over 65 effectively out of reach. Only a few programs have been developed for these women. Some older women appear to be more reluctant to examine themselves and may not respond to certain teaching settings. Programs to educate them in self-examination techniques need to be tailored to their values and expectations. Annual mammography and physician examinations for women over 40 are associated with improved early diagnosis and significant decreases in cancer mortality. There is a significant association between obesity and cancer of the breast and uterus in women, and cancer of the colon and prostate in men. High fat intake is also associated with breast cancer and prostate cancer, perhaps due to the effect on estrogen metabolism, imbalances of which are associated with increased risk of certain cancers. COLORECTAL The colon and rectum are the leading sites for overall mortality from cancer in those over 75. The 10-year survival rate for persons with localized cancer is 67 percent, compared with 36 percent for nonlocalized cancer. Since only 41 percent of all colorectal cancers are detected at a localized stage, early detection of this form of cancer is a high priority for prevention programs. The guaiac test, and other simple tests of occult bleeding from the digestive tract, can be used in screening for colon and rectal cancers. But fewer persons over age 70 (27 percent) accepted an invitation to take a screening test than did younger persons (38 percent) in a recent study, although rates were low for both groups (19). The International Workshop on Colorectal Cancer recommends that the elderly undergo sigmoidoscopy every 3 to 5 years to screen for cancer (19). Several dietary factors have been associated with cancer of the gastrointestinal tract. The dietary recommendations of the American Cancer Society (1984), though based largely on epidemiological and some experimental data, are meant to help reduce the risk of gastrointestinal and certain other cancers. These recommendations include: avoid obesity; reduce intake of fat, alcohol, and salt-cured, smoked, or nitrite-cured foods; and eat cruciferous vegetables and foods high in fiber and vitamins A and C. Risk factors associated with fractures The most important risk factors for fractures are osteoporosis and falls. The incidence of fracture rises dramatically with age: among women 75 to 79, the incidence of hip fracture is 6 per 1,000; among those 85 to 89 the incidence in-
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Ch. 4Health Promotion/Disease Prevention and Nutrition in the Elderly l 127 creases to 21.4 per 1,000; and among women over 90 the incidence rises to 48.6 per 1,000 (19). OSTEOPOROSIS Osteoporosis is estimated to cause about twothirds of hip fractures in older people. The incidence of hip fractures resulting from osteoporosis was estimated at 98 per 100,000 in 1977, at a total annual cost for acute care of some $800 million. The number of hospital patient days resulting from these fractures is ranked both among conditions counted, The mortality rate from falls is estimated at 20 to 30 percent, with an additional 13 percent of survivors who never return to independent ambulation (23). Because 90 percent of fractures in older women are associated with little or no trauma, and in fact may occur simply because of osteoporosis (19), prevention of osteoporosis could sharply reduce the incidence of fractures among the elderly. current osteoporosis-prevention research centers on the effectiveness and possible risks of estrogen therapy after menopause, supplemental intake of calcium by women both before and after menopause, and the role of exercise in bone strengthening. Although estrogen replacement therapy after menopause seems to inhibit bone resorption, it has also been associated with increased risk of cancer of the uterine lining. Calcium absorption declines with age and can decrease by 30 to 50 percent by age 80 (18). The theoretical daily intake of calcium needed to counteract bone loss has been suggested as 1 ) 000 mg for premenopausal women and 1,500 mg for postmenopausal women (18). Blood levels of vitamin D, which promotes intestinal absorption of the calcium and phosphate involved in bone mineralization, are often deficient in the elderly and can be up to 50 percent lower than those of younger controls. These low serum levels of vitamin D may be due to reduced intake, reduced intestinal absorption, and/or decreased exposure to the sunlight that drives synthesis of the vitamin in the skin (30). New evidence indicates that bone mineral content can be increased in older women by exercise. In a study of women whose mean age was 84, one group exercised (nonstrenuous exercise, sitting in a chair) 30 minutes a day, three times a week. This control group gained bone mineral content while an inactive group lost bone mineral content. Physical activity at any age may thus have a significant effect in reducing the effects of osteoporosis and the likelihood of fracture (34). (For further details see section on osteoporosis in ch. 3). FALLS The U.S. Public Health Service estimates that two-thirds of falls by the elderly ma-y be preventable. The risk of fracture associated with falls increases with age, especially for women. Falls are caused by both environmental and physical factors. As many as half of the falls sustained by the elderly may be caused by such environmental factors as loose, torn, or frayed rugs, poor lighting, icy sidewalks, or broken stairs. Poor vision (which is sometimes correctable), underlying physical conditions such as Parkinsons disease, seizures, cerebrovascular disease, and conditions that cause fainting or dizziness, also contribute to the incidence of falls. The incidence of falls could be reduced by more extensive diagnosis and treatment of these disease conditions and efforts to eliminate environmental obstacles. Inappropriate or excessive medication-especially of sedatives, hypnotics, psychotropic, anticonvulsives, and antihypertensive agentsoften causes falls. In one study, 93 percent of patients who were observed to fall between 10:00 p.m. and 6:00 a.m. had taken a barbiturate (19). Risk factors associated with sensory l 0SS VISION The prevalence of unattended treatable eye pathology rises dramatically after age 60, exceeding 85 percent of the elderly aged 65 to 74. Refractive problems increase less rapidly than cataracts, and cataract correction may be unduly delayed. Screening for glaucoma, which is effective, may be ignored by the elderly. The fragmentation and lack of coordination of services for the elderly, the needy, and the blind and partially sighted constrain the correction of visual problems among the older population (19).
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128 l Technology and Aging in America TASTE Age-related changes in, for example, the gastrointestinal tract may impair food intake, digestion, and absorption of certain nutrients (see app. C). The sense of taste itself changes with age, and this can lead to malnutrition. Compounding the risk of malnutrition is the fact that current Recommended Dietary Allowances (R.DAs) of various nutrients consider the elderly as a single 51-andover age group, despite wide disparities in individual and age-related nutritional needs. HEARING Hearing loss affects the ability to function independently, affects communication, and can lead to a medical diagnosis of cognitive impairment. The prevalence of hearing impairment is 28 percent in persons over 65 and about 40 percent in those over 75 (see OTA background paper on Management of Hearing Impairments in the Elderly). Although many hearing impairments are not correctable with current technologies, simple hearing aids to amplify speech can be very effective in some cases. Hearing aids are expensive, difficult to adjust, not reimbursed by Medicare, and often fraudulently marketed; all of these factors lead to neglected, treatable hearing problems in the elderly. Risk factors associated with dental disease In 1971 about 45 percent of Americans over 65 were estimated to have lost all of their teeth (36). Nutritional deficiencies Dental caries and periodontitis are the justification for 90 percent of extractions. Dental disease can limit the food choices and eating practices of the elderly and damage their self-image and social confidence. Clinical studies done in the 1940s reported a high prevalence of vitamin C and Bcomplex deficiencies among edentulous (lacking natural teeth) elderly, but need to be updated (16,22). Both nutritional and hygienic practices have been implicated in dental disease. The intake of starches and simple sugars is known to aggravate decay and increase the risk of loss of teeth (4). Intake of simple sugars increased during the early years of this century, while intake of the more nutritious complex carbohydrates declined from 43 percent (1909) to a current 29 percent of dietary food energy (28). Periodontal disease, or recession of the gum and resorption of the bone surrounding the roots of the teeth, is probably related to general age-related loss of bone mass (see section on osteoporosis); possible prevention and treatment of this disease through dietary calcium supplements warrants further exploration. Despite the impact of dental disease on the elderly, 48 percent of those who still have teeth have not visited a dentist within the last 5 years (6). Because routine dental examinations are not covered by Medicare or most private health insurance, a major obstacle for the elderly may be cost There are few reliable data on the prevalence of frank or subclinical nutritional deficiencies among the elderly. However, it is known that the elderly are particularly susceptible to malnutrition because of the physiological and behavioral changes of aging, and increased prevalence of chronic disease. For example, age-related changes in the gastrointestinal tract may impair intake, digestion, and absorption of certain nutrients. Psychosocial changes associated with aging, such as senile dementia, isolation, and depression may also suppress appetite and increase the risk of nutrient deficiency (see app. C). Subclinical malnutrition is difficult to diagnose, both because physicians may not be aware of it and because not enough is known about adequate nutritional levels for the elderly. Current RDAs for the elderly are based on survey and research data from younger groups that have been extrap-
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Ch. #Health Promotion/Disease Prevention and Nutrition in the Elderly l 129 elated to the entire over-50 population, which is an extremely heterogeneous group. Direct study of the special nutritional needs of those in age groups over 65 is needed to provide better standards for medical care, food assistance programs, and national nutrition surveys. The Federal Government has attempted to ameliorate the problem of malnutrition among high risk segments of the population, including the elderly, through federally sponsored food assistance programs (see table C-8 in app, C). An estimated 1.9 million elderly persons are now enrolled in congregate and home-delivered meal programs (29), but the food stamp program remains the largest program affecting noninstitu tionalized elderly persons (l). In fiscal year 1981, for example, an average of 22.4 million people received food stamps each month. Because currently available evaluations of federally funded food assistance programs that serve the elderly are inconsistent and flawed, they yield little information about dietary and health benefits of these programs. There is general agreement, however, that they are not reaching certain target groups, especially minorities and the socially isolated (see app. C). Conclusions The central issues in health promotion and disease prevention strategies for the elderly are the efficacy and the cost effectiveness of particular interventions. Further, many of the risk factors require behavior modification and are ultimately the personal responsibility of the individual. Improved quality of life is also important in that many interventions, while they do not significantly alter health statistics, have an effect on functional independence. This quality-of -life factor is often not considered in the present structure of Medicare/Medicaid reimbursement. The overriding Federal issue is the reimbursement structure of the present Medicare/Medicaid system. At present, reimbursement is principally for acute care, and payments are prohibited for all or most preventive services (exceptions: immunization against pneumococcal pneumonia and Photo credit Suzanne L Murphy Federally subsidized congregate meal programs for the elderly help assure adequate nutrition and promote social interaction. The Federal Government could effectively promote preventive nutrition through intensified public education. Inasmuch as eating habits are established early in life and many risk factors for age-related conditions are cumulative throughout adulthood (as for CHD and osteoporosis), such nutrition education should be targeted to all adults, not just the elderly. short-term rehabilitation). Many relatively inexpensive preventive measures are not reimbursed, yet the consequences of not applying these measures in fact increase overall Medicare costs. A rethinking of reimbursement categories may, therefore, be in order. Preventive services that are directly linked to reduction in need for acute care but are not presently reimbursed include: Periodic screening. Among the preventive measures effective here are screening for hypertension, and breast and colorectal cancer. Mammography exams are not reimbursed, but acute care for breast cancer is. The occult blood test, a very simple and inexpensive test for detection and early diagnosis of colorectal cancer, is not reimbursed. Bloodpressure control is an achievable goal because hypertension is easily detected and
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130 l Technology and Aging in America l l l l l usually correctable. Although treatment of hypertensives must be carefully monitored to avoid iatrogenic problems, reduction in blood pressure is a significant factor in 1owering stroke and overall mortality rates in the elderly population. The prevalence of hypertension in persons aged 65 to 74 dropped from 49 to 41 percent in the 1960s and 1970s; the CHD death rate in this group showed a similar decline during this period (35). Long-term care. There is only minimal reimbursement for tertiary prevention, which could aid in increasing functional independence and thus reduce costs of long-term care and related services (see discussion in ch. 7) (25,35). Vision. Refraction is not reimbursed, yet visual problems are a major component of falls. (Trauma related to falls is reimbursed). Drug and alcohol abuse, Treatment is not generally reimbursed. when untreated, these conditions can lead to nutritional problems and to increased mental confusion that mimics senile dementia (see OTA Case Study on the Effectiveness and Costs of Alcoholism Treatment for Medical Technology and Costs of the Medicare Program), Hearing. Hearing loss can be a risk factor for injuries and falls, and purchase of hearing aids is not reimbursed (for further information, see the OTA Background Paper on Management of Hearing Impairments in the Elderly). Dental care. Lack of dental care has both direct effects on healththe occurrence of periodontal disease-and indirect effects in that the individuals opportunity to maintain adequate nutritional levels is compromised. Lack of teeth, or poor teeth, may also lower self-esteem, Medicaid does pay some of these preventive costs, but eligibility criteria differ from State to State. Billions are being spent for acute care, yet relatively little reimbursement is allocated to prevention, which could potentially reduce these acute care costs. Some evidence of potential savings exists, but there is no available hard evidence of potential levels of cost reduction. Measures for research on the degree to which prevention could reduce acute care costs in the elderly are thus sorely needed. (Note: A proposal for a separate health promotion/disease prevention section of the National Institutes of Health has recently been passed by the House. See ch. 3.) The irony is that while some research is underway, growing numbers of Americans are failing to avail themselves of proven preventive measures e.g., smoking cessation, diet modification, exerciseand in so doing, increasing the likelihood that they will someday need acute care. The obvious goal is to keep people healthy and functionally independent until they die at a late age. How to allocate health care delivery and research resources for prevention is an important component of achieving this goal. Improving the nutritional status of the elderly clearly calls for establishing nutritional RDAs for subgroups of people over 50, Once these data are available, educational efforts targeted to both the elderly and health care providers can be more effective. But there is little accurate or reliable information on the dietary benefits that these programs provide for the elderly, In general, participants are nutritionally better off than nonparticipants, but food programs are not always reaching target groups, especially the poor and minority elderly. Congressional issues and options There is growing evidence that the amelioraespecially among the elderly, to reduce the prob tion of specific risk factors can reduce the inability of other causes of morbidity and mortalcidence of the three leading causes of mortality ity, such as falls and fractures. Many of these coronary heart disease, cancer, and stroke. It is measures can not only reduce the incidence of also known that specific actions can be taken, specific diseases but can improve the quality of
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Ch. 4Health Promotion/Disease Prevention and Nutrition in the Elder/y 131 life. At present, Medicare reimbursement is principally for acute care and prohibits payment for all or most preventive services (exceptions: immunization against pneumococcal pneumonia and short-term rehabilitation). Although many relatively inexpensive preventive measures are not reimbursed, the consequences of not applying these measures are usually more costly to the Medicare system. These measures include screening for hypertension and for breast, cervical, prostate, and colorectal cancers; refraction for visual problems; treatment of drug and alcohol abuse; provision of hearing aids; and dental care. ISSUE 1: Does research indicate that health promotion interventions are cost effective? Research on the cost effectiveness of various health promotion/disease prevention strategies is in its infancy. options available to Congress include: Options: 1. 1: Congress could maintain the status quo. 1.2: Congress could increase its level of involvement in aging research and stipulate that cost effective ness be a part of new health promotion research within the National Institutes of Health. The advantages and disadvantages of greater or lesser congressional support of biomedical research and greater or lesser direct involvement with the direction of such research are discussed in chapter 8. Inasmuch as some research is being undertaken in health promotion, more evidence of the cost effectiveness of various interventions will emerge even if the status quo is maintained. But if Congress were to stipulate that some of this research be devoted to potential savings in the cost of acute care because of health promotion interventions by the prevention offices within NIH, reformulation of Medicare reimbursement categories could proceed more swiftly. ISSUE 2: Should Medicare reimbursement categories be reconsidered with a view to increased reimbursement for health promotion/disease prevention interventions? Direct links between particular interventions and the occurrence of morbidity and mortality, and the costs of these interventions compared to those for acute care, are not clearly established. It is known, however, that the potential for cost savings in acute care is significant. Options: 2.1: Congress could maintain the status quo. 2.2: Congress could adopt option 1.2 above and stip ulate that results from these studies be considered by the Prospective Payments Commission. In maintaining the status quo, research in health promotion would continue and some of these research results might be incorporated into clinical practice activities. For example, research could be initiated to determine the cost effectiveness of fixed-fee payments to physicians who carry out specific preventive services. If the second option were to be adopted, Congress could ensure that results were considered as soon as they became available. One advantage of this approach is that in the case of some health promotion interventions (e.g., cancer screening and correction of vision and hearing problems), it may be relatively easy to quickly demonstrate that simple interventions for specific conditions are cost effective by comparison to later costs for acute care. one disadvantage of this option is that the mandate for the Prospective Payments Commission would have to be changed, since it currently is concerned only with hospital costs. ISSUE 3: How could Congress obtain more accurate and standardized evaluations of Federal food assistance programs in order to improve their efficacy? Most currently available evaluations of Federal food assistance programs fail to use representative samples, longitudinal data, and biochemical tests to accurately establish the nutritional status of participants and possible benefits of the program meals. Many examine neither the efficacy of the mandated nutrition education nor the qualifications of the meal program staff. Findings of many evaluations are consequently limited, inaccurate, and cannot be compared with those of other evaluations. Options: 3.1: Congress could require standardized evacuation techniques for Government-contracted surveys
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132 Technology and Aging in America 3.2: 3.3: of food assistance programs. Such techniues would involve standardized biochemical and anthropometric (and, impossible, lotuchnal) determinants of nutritional status, representative samples, and better evaluations of both program staffs and the quality of the nutrition education offered to program participants. Congress could establish funding incentives or other sponsorship for private investigators who use such standarzied techniques. Congress could mandate that the Health and Nu trition Examination Survey (HANES) include age groups over 74 and that it include a sample of elderly foodprogram participants to be compared with the general population. Presumably, investigators contracted by the Government would improve their techniques for evaluating food assistance programs after seeing the flaws of past evaluations. Conversely, the lack of accurate, comparable data about such a large government program may be serious enough to warrant development of specific guidelines and requirements for federally contracted evaluations that would create a pool of comparable information. There is a dearth of reliable data on the efficacy of the programs in terms of nutritional impact, nutrition education, and the level of food management training required of meal-site employees. ISSUE 4: How could Congress approach the failure of the meal programs to reach certain target groups Many surveys find that food assistance programs, including food stamps, are inadequate to reach some of the target groups specified in the programs original congressional mandate, For example, persons aged 60 to 64 are at present ineligible for food stamps and most meal programs operate only 5 days a week. While low-income groups seem to be represented among participants, minorities and the socially isolated are not well represented. This could be due to public ignorance of the programs, inaccessibility of the programs to these underrepresented target groups, or voluntary lack of participation. Options: 4.1: 4.2: 4.3: 4.4: Congress could require the Administration on Aging to develop guidelines and materials for targeting educational information on food assistance programs to the most needy groups. Congress could require that local programs actively seek out the most needy, especially within the underrepresented target groups, within a given community. Congress could mandate quotas for target groups according to local demographic characteristics of each program site or area, Congress could mandate that the Administration on Aging and the National Institute on Aging pare and disseminate health and nutrition education materials to consumers. There is disagreement as to whether lack of participation in meal programs is a result of ignorance of the programs or lack of mobitity. Efforts to educate would be costly but might encourage the most needy in the community to gravitate toward the food assistance programs. There is some evidence that some active intervention on the Governments part is necessary in both education and mobility to ensure that these mandated target groups are served. RESEARCH PRIORITIES Current Recommended Dietary Allowances (RDAs) for the elderly fail to take into account the age-related physiological, behavioral, and pathological changes that can affect their nutritional needs. Certain nutrients are especially relevant to the aging process and should be stressed in research on elderly nutrition; these include calcium, vitamin D, B vitamins, vitamin A, zinc, sodium, and fats.
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Ch. 4Health Promotion/Disease Prevention and Nutrition in the Elderly 13 3 Technical memorandum The OARS assessment battery yields information on five functional activity areas: l l l l l social resources, quantity and quality of relationships with friends and family, and availability of care in time of need; economic resources, adequacy of income and resources; mental health, extent of psychiatric well-being, cause of existing disorder, if any; physical health, presence of physical disorders, participation in physical activities; and activities of daily living, capacity to perform various instrumental and physical (or bodily care) tasks that permit individuals to live independently (for other measures, see ref. 20). Another approach uses clinical and epidemiologic criteria to identify specific health goals and professional services appropriate for 10 different age groups from birth to 75 years and over. For example, the goals for the elderly (60 to 74 years) are as follows: l to prolong the period of optimum physical/mental/ social activity, l to miminize handicapping and discomfort from onset of chronic conditions, and l to prepare in advance for retirement. The professional services are: Chapter 4 references 1. Akin, J. S., Giulkey, D. K., and Popkin, B. M., Participation of the Elderly in Food Stamp and Feeding Program, seminar presented to Human Nutrition Information Service, Consumer Nutrition Division, U.S. Department of Agriculture, Sept. 28, 1983. 2. American Diabetes Association, (Principles of Nutrition and Dietary Recommendations for Individuals With Diabetes Mellitus, Diabetes 28:10271030, 1979. 3. Arky, R., Wylie-Rosett, J., and E1-Beheri, B., Examination of Current Dietary Recommendations for Individuals With Diabetes Mel]itus, Diabetes Care 5:59-63, 1982. 4. Bierman, E. L., Carbohydrates, Sucrose and Human Disease, Am. J. Clin. iVutr. 32:2712-2722, 1979. l l l l professional visits with the healthy adult at age 60 and every 2 years thereafter, including the same tests for chronic conditions as in older middle age, and professional counseling regarding changing lifestyle related to retirement, nutritional requirements, absence of children, possible loss of spouse, and probable reduction in income as well as reduced physical resources; annual immunization against influenza; annual dental prophylaxis; and periodic podiatry treatments as needed (5). Another approach that stresses functional independence has the following criteria: the ability to perform activities of daily living, i.e, bathing, dressing, toileting, transfer, continence, and feeding; degree of mobility of the individual, including the capacity to move about within the home, the immediate neighborhood, and the larger community; mental state of the individual: cognition, psychological level of functioning, and the ability to cope emotionally with problems of daily life; and nature of the social and economic environment and the degree of support it offers (20). 5. Breslow, L., and Somers, A. R., The Lifetime Health-Monitoring Program: A Practical Approach to Preventive Medicine, New Eng. J. Med. 296(11): 601-608, 1977. 6. Cohen, J. B., and Logan, E., Health Promotion/Disease Prevention for Elders: The State of the Art, contract prepared for OTA, September 1983. 7. Coronary Drug Project Research Group, Clofibrate and Niacin in Coronary Heart Drug Disease, .J.A,M.A. 231:360-381, 1975. 8. Dahl, L. K., Salt and Hypertension, Am. J. Clin. Nutr. 25:231-244, 1972. 9. Darby, W. J., et a]., Niacin, Nutr. Rev. 32:289-297, 1975. 10. deVries, H. A., Tranquilizer Effect of Exercise: A Critical Review, The Physician and Sports Medicine 9(1 1):47-55, November 1981.
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134 l Technology and Aging in America 11. deVries, H. A., Physiological Effects of an Exercise Training Regimen Upon Aged 52-88, J. Gerontolo~v 25:325-336, 1970. 12. deVries, H. A., Physiological Effects of an Exercise Training Regimen Upon Men Aged 52-88, J. Gerontology 25(4):325, October 1970. 13, Doll, R., and Pete, R., The Causes of Cancer: Quantitati~re Estimates of Avoidable Risks of Cancer in the United States Today, JNCI 66:1191-1308, 1981. 14. Filner, B., and Williams, T. F., Health Promotion for the Elderly: Reducing Functional Dependency, background paper prepared for HealthLv People, the Surgeon Generals Report on Health Promotion and Disease Prevention, DHFXV publication No. 7955071A, 1979. 15. Franks, P., Lee, P. R., and Fullarton, J. E., Lifetime Fitness and Exercise for Older People, A background paper prepared for the Administration on Aging, Aging Health Policy Center, IJniversity of California, San Francisco, April 1983, pp. 52-53. 16. Greene, H. F., Dreizen, S., and Spies, T. D., A Clinical Survey of the Incidence of Impaired Masticator Function in Patients of a Nutrition Clinic, J. Am. Dent. Assoc. 39:561-571, 1949, 17. Haskell, W., Physical Activity in Health Maintenance, Wawvs of Heahh, D. Sobel (cd. ) (New York: Harcourt, Brace, Jovanovich, 1979). 18. Heaney, R. P., et a]., (Calcium Nutrition and Bone Health in the Elderly, Am. J. C/in. Autr. 36:9861013, 1982. 19. Kane, R. L., Kane, R. A., and Arnold, S. B., Prevention in the Elderly: Risk Factors, paper prepared for the Conference on Health Promotion and Disease Prevention for Children and the Elderly, Foundation for Health Services Research, Sept. 16, 1983. 20. Kane, R. A., and Kane, R. L., Assessing the Elderly: A Practical Guide to Measurement (Lexington, MA: Lexington Books, 1981). 21. Last, J. M. (cd.), Maxcy-Rosenau Public Health and Preventive Medicine, llth ed. (New York: Appleton-Century Crofts, 1980), pp. 3-4. 22. Mann, A. W., Mann, J. M., and Spies, T. D., A Clinical Study of Malnourished Edentulous Patients, J. Am. Dent. Assoc. 32:1357-1368, 1945. 23. Marks, J. L., Osteoporosis: New Help for Thinning Bones, Science 207:628, 1980. 24. McCarron, D. A., Morris, C. D., Henry, H. J., and Stanton, J. L., Blood Pressure and Nutrient Intake in the United States, Science 224:1392-1398, 1984. 25. Minkler, M., and Fullarton, J., Health Promotion, Health Maintenance, and Disease Prevention for the Elderly, background paper for the 1981 White House Conference on Aging, prepared for the Office of Health Information, Health Promotion, Physical Fitness and Sports Medicine, 1980. 26. National Council on the Aging, Inc., Aging in the 803: America in Transition, a sur~ey conducted for the National Council on the Aging, Inc. by Louis Harris & Associates, Inc. (Washington, DC: National Council on the Aging, Inc., November 1981). 27. National Research Council, Committee on Diet, Nutrition, and Cancer, Diet, Nutrition, and Cancer (Washington, DC: National Academy of Sciences, 1982). 28. National Research Council, Food and Nutrition Board, Recommended Dietajy Allowances, 9th re~. ed. (Washington, DC: National Academy of Sciences, 1980). 29. Opinion Research Corp. and Kirschner Associates, An Evaluation of the Nutrition Services for the Elderly, tolume ZIZ: llescripti~e Report, conducted for the Administration on Aging of the U.S. Department of Health and Human Services, May 1983. 30. Parfitt, A. M., et al., Vitamin D and Bone Health in the Elderly, Am, J. Clin. Nutr., 36: 1014 -103I, 1982. 31. Puska, P., and Nissinen, A., et al., Controlled, Randomized Trial of the Effect of Dietary Fat on Blood Pressure, Lancet 1:1-9, 1983. 32. Rouse, I. L., et al., Blood-Pressure-Lowering 13 ffect of a Vegetarian Diet: Controlled Trial Normotensive Subjects, Lancet 1:5-10, 1983. 33. Rowe, J. W., Systolic Hypertension in the Elderly, Alew Eng. J. Med. 309(20):1246-7, 1983. 34. Smith, E. L., Reddan, W., and Smith, P. E., Physical Activity and Calcium Modalities for Bone Mineral Increase in Aged Women, Med. Sci. Sports Exerc. 13:60-64, 1981. 35. Somers, A. R., and Weisfeld, V. D., The Challenge of Health Promotion for the Elderly, paper presented to Western Gerontological Society, 29th Annual Meeting, Albuquerque, NM, Apr. 18, 1983. 36. U.S. Department of Health and Human Services, National Center for Health Statistics, Edentulous Persons in the U. S., 1971) N.C.H.S. Series 10(89), 1974. 37. U.S. Department of Health and Human Services, Arteriosclerosis 1981, Volume 2: Report of the Working Group on Arteriosclerosis of the National Heart, Lung, and Blood Institute, NIH publication No. 82-2035, September 1981. 38. Walker, W. J., Changing U.S. Life Style and Declining Vascular MortalityA Retrospective, Ne\\r Eng. J. Med. 308(11):649-651, 1983. 39. Williams, T. F., Diabetes Mellitus, Clin. Endo. Metab. 10:179-194, 1981.
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Chapter 5 Medications and the Elderly
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Contents Page Introduction . . . . . . . . . . . . . . . . 137 Use of Medications Among the Elderly . . . . . . . . . . 137 Biologic Differences in Drug Effects and Metabolism Older People . . . 140 Altered Metabolism and Tissue Sensitivity . . . . . . . . . 140 Characteristics of Drug Use . . . . . . . . . . . . 141 Side Effects and Adverse Drug Interactions . . . . . . . . . 141 Patient Compliance with Drug Prescriptions . . . . . . . . 143 Issues Specific to Drugs Affecting Mental Function. . . . . . . . 145 Need for Increased Education of Health Care Providers . . . . . 145 Use of Over-the-counter Drugs . . . . . ., . . . . . 146 Patient Information on Drugs . . . . . . . . . . . 146 Congressional Issues and Options . . . . . . . . . . . 148 Chapter 5 References .:. . . Tables Rible NO 10. Comparison of Inflation Factors for 11. Age-Related Changes Altering Drug Figures Figure No. . . . . . . . . . . 153 Page Prescription Drugs and Other Goods ... . 140 Metabolism and Sensitivity. . . . . 140 Page 18. Percent Change in Prices From Previous Year . . . . . . . 139
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Chapter 5 Medications and the Elderly Introduction Drug treatment is an important medical technology that is especially important to the elderly population. Medications are widely used by older Americans, and Federal policy directly affects the availability of drugs for general use. The safety of using medications, availability of information about drugs, and new technologies that might improve how drugs are delivered and used are covered in the following chapter. Congress has demonstrated an interest in issues related to use of medications by older Americans. A joint hearing was held in June 1983 by the Senate Special Committee on Aging and the Subcommittee on Health and Long-Term Care of the House Select Committee on Aging entitled Drug Use and Misuse: A Growing Concern for Older Americans (70). That hearing covered many of the issues raised in this chapter. A number of other medical technologies from this report have been excluded because they are covered in other OTA reports. One area deserves special mention that of medical devices. There is a vast potential for medical devices that improve IThe definition of technology used b e y OTA is a drug, dmice, or medical or surgical procedure used in medical care. function and enhance independence among disabled elderly individuals. Some of these devices are reviewed in the section on Long-Term Care in chapter 7. others have been assessed in recent OTA reports, such as Technology and Handicapped People, as noted below, or are currently the subject of other OTA projects. Devices specifically relevant to urinary incontinence and hearing impairments are reviewed in case studies on those subjects to be published separately. Among the current OTA assessments that cover relevant technologies, such as diagnostic and therapeutic procedures, are: l l l l l l Federal Policies and the Medical Devices Industry (october 1984), Medical Technology and the Costs of the Medicare Program (July 1984), Postmarketing Surveillance of Prescription Drugs (November 1982), Medical Technology Under Proposals To Increase Competition in Health Care (october 1982), MEDLARS and Health Information Policy A Technical Memorandum (September 1982), and Technology and Handicapped People (May 1982). Use of medications among the elderly More than four out of five Americans over 65 now suffer from one or more chronic diseases (86 percentsee chs. 7 and 9 and app. A). About 85 percent of the noninstitutionalized elderly and 95 percent of those in hospitals, nursing homes, and other institutions take medications on a regular basis (39). Although those over 65 constitute 11 percent of the population, they use 30 percent of prescription drugs (54,64), more than twice as many as the average user (7,39). An average of 10 different drugs is prescribed for an elderly patient during each hospital stay; the usual number of prescriptions for those in nursing homes is 4 to 7 (54). The average number of prescriptions for those who use drugs and are over 65 rose from 13.4 per year in 1967 to 17.9 in 1977; 90 percent of these prescriptions are for longterm use to treat chronic medical conditions (37). 137
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. 138 l Technology and Aging in America As disease prevalence rises with age, drug use increases. older individuals take medications for several types of illnesses. They use the everyday drugs used by the general population for colds, acute infections, and headaches. Such chronic diseases as arthritis, hypertension, and cardiovascular disorders, which are especially common in older people, determine the use of another group of drugs that includes diuretics, anti-hypertensives, anti-inflammatory agents, and cardiac drugs (60). Elderly women suffer disproportionately from drug-related problems. They live longer, are more likely to live alone (almost twice as likely as men), and have lower average incomes and a higher prevalence of disability than men. Each of these factors complicates drug therapy. The oldest women are the most vulnerable to adverse reactions and other untoward consequences of using drugs. Drug use improves the condition of most elderly patients; drugs are used because they work. Patients are better off because useful drugs are available, and drugs are (probably the most costeffective modality of chronic disease management (36). While the rate of inflation for medical costs overall during the last decade has been far greater than for the economy as a whole, pharmaceutical prices have risen more slowly than the Consumer Price Index (CPI) (19). Inflation for pharmaceuticals has exceeded the CPI in recent years (fig. 18), but the average inflation over the past decade remains favorable (table 10). Pharmaceutical therapy is not only medically effective but can also produce savings by diminishing morbidity and forestalling the need for more expensive forms of medical treatment. For example, the use of cimetidine ragamet~ for duodenal ulcer disease led to an estimated 26-to 70-percent cost savings for Medicaid in Michigan in the first year of its use, primarily by substituting for surgery in some patients (18). It is not clear that this figure can be extrapolated specifically to the elderly population, because the study included all age groups, but the potential for cost savings over the short term has been demonstrated for the general population in this study. In another example, lithium treatment of manicdepressive illness has saved an estimated $4 billion over the last decade, according to the director of the National Institute of Mental Health (56). Use of drugs to treat diseases for which there has never previously been effective therapy can, however, increase health care costs, if their cost is higher than previous modes of therapy. Treatments requiring extensive drug therapy may also increase overall costs. Many issues concerning the cost effectiveness of drug therapy, proper indications for drug use, and regulatory practices vis-a--vis the drug industry are not directly relevant to this report, because they do not specifically affect the older population. Although these issues are important for older Americans because they use more drugs, policy changes would not be directed at improving the lot of the elderly per se. The balance of this chapter thus deals with those aspects of drug therapy that do specifically affect the older American population. The issues to be discussed include metabolic and clinical differences between older and younger individuals, drug testing regulations, and patterns of drug use unique to the elderly. Older Americans pay more for prescription medications than does the general population. Those over 65 pay an average of $93 per year for prescriptions, compared to $79 for those .55 to 64 and $27 for those 19 to 24 (27). Cost differences are especially marked in the heaviest users: 3.3 percent of those over 65 pay more than $250 per year for prescription drugs, compared to 2.2 percent of those 55 to 64 and 0.5 percent of those 19 to 24 (27). Some contend that these figures substantially underestimate the economic impact of drug use among the elderly, because such figures do not capture over-the~ounter medications, and do not measure the impact of a substantial minority of elderly patients who have medication bills far in excess of $250 (37). The important topic of reimbursement policy for prescription drugs under Medicare has been omitted because it has been analyzed in detail in a recent report which gives potential costs of changes in Medicare reimbursement policy and cost estimates for a variety of options (65). Many of the problems of drug use among the elderly are due to altered metabolism, the pres-
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Ch. 5Medications and the Elderly l 139 14 12 12 11 Ic 9 8 7 ~ 6 al o z Q 5 4 3 2 1 0 2 3 Figure 18. Percent Change in Prices From previous Year (based on table 10) I 1 ; i \ / I \ \ I I / / / / / \ \ / / \ d l 1974 195 19 1977 1978 1979 1980 1981 1982 1983 1 \ \ \
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140 l Technology and Aging in America Table 10.Comparison of Inflation Factors for Prescription Drugs and Other Goods Prescription Drug Consumer Price index Year Price index for ali goods 1967 . 100.0 100.0 1968 . 98.3 104.2 1969 . 99.6 109.8 1970 . 101.2 116.3 1971 . 101.3 121.3 1972 . 100.9 125.3 1973 . 100.5 133.1 1974 . 102.9 147.7 1975 . 109.3 161.2 1976 . 115.2 170.5 1977 . 122.1 181.5 1978 . 131.6 195.4 1979 . 141.8 217.4 1960 . 154.8 246.8 1981 . 172.5 272.4 1962 . 192.7 289.1 1983 . 213.8 298.4 SOURCE: Bureau of Labor Statistics, cited by Palumbo, 1984 (55). ence of multiple diseases, the use of multiple drugs, and increased susceptibility to side effects. Biologic differences in drug effects and metabolism in older people Drugs are tested for side effects and therapeutic effectiveness in the general population, yet are used most often by the elderly, in whom they may act in a manner not always detected in studies of the general population. Recent studies of pharmacokinetics-the study of how drugs are distributed and metabolized in the bodyand pharmacodynamicsthe study of how drugs actshow significant differences between older and younger populations. These differences are based on fundamental biological age-related changes that affect the bodys ability to process, store, and excrete drugs (table 11). Biological differences between older and younger patients are analogous to the differences between adults and infants. It has been said that just as it took many years to recognize that infants are not simply smaller adults and must be treated differently, it is not yet universally recognized that the elderly require different treatment than younger adults (33). Table 11.Age=Related Changes Altering Drug Metabolism and Sensitivity 1. Body composition L. Iv. v. A. Decreased lean body mass B. increased proportion body fat C. Decreased total body water D. Decreased blood albumin (small change) Heart and blood vessels A. Decreased heart response to stress B. Increased size of heart C. Diminished vessel elasticity D. increased total vascular resistance to blood flow E. Decreased oxygen delivery to selected organs Kidneys Liver, brain, and muscles (small change) Kidneys A. Decrease in number of blood filtering units (nephrons) B. Decreased blood flow through kidneys C. Decreased filtering and clearance rate of blood components D. Decreased ability to adapt to maximum loads Digestive organs A. Slowed stomach emptying B. Diminished acid secretion C. Decreased peristalsis D. Decreased absorption (small change) Liver A. Altered drug metabolism (slowed oxidation, especially in men, conjugation relatively unaltered) B. Diminished blood flow (small change) VI. Nervous system A. Decreased threshold for depressant medications B. Decreased coordination and short-term memory (small change, unless another disorder is also present) C. Diminished blood flow to brain and nerves (slight, in absence of vascular disease) D. Slowed velocity of conducting impulses in nerves E. Slowed reflexes Vii. Lungs A. Decreased lung elasticity B. Decreased effective surface area for oxygen exchange C. Decreased effective breathing volume D. Decreased rate of expelling air E. Decreased clearance of irritants (ciliary movement) Viii. Endocrine organs A. Decreased sex hormones (in general, with a few exceptions) B. Decreased response to sugars C. Many other alterations, too numerous to list, including stress hormones, regulators of metabolic rate, and body volume regulation SOURCE: Lamy, 1982 (33), as modified by OTA with the assistance of J. Rowe, Altered metabolism and tissue sensitivity Older adults have significantly altered drug reaction and metabolism (7)20,33)36)38)43). They also have a higher percentage of fatty tissue com-
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Ch. 5Medications and the Elderly 141 pared to lean body mass, which causes increased effective concentrations of water-soluble drugs and prolonged retention of fat-soluble drugs. Hepatic metabolism of drugs, particularly oxidative processing in older males, is altered with age, which may lead to reduction of the required dose of drugs so processed. Decreased kidney function with age leads to prolonged retention of drugs in the body, often lowering the dose of a drug required to achieve useful concentrations, or necessitating an increase in the time between doses. Decreased blood albumin causes increased effective plasma concentrations of many drugs. Tissue sensitivity to drugs may also increase or decrease with age, depending on the tissue, the patient, and the drug. Many of these changes lead to a need for reduced doses of drugs. The clinical effect of many benzodiaepine drugs (common sedative agents) in older patients, for example, is more intense than in younger patients with similar blood concentrations (47). Prescription sleeping pills provide striking examples of how altered biological characteristics can necessitate adapting the treatment to the older patient. Common sleeping pills, also called minor tranquilizers or hypnotics, are fat-soluble chemicals that are retained longer in older patients: flurazepam (Dalmane @ a hypnotic agent) stays in an elderly patient for an average of 1 week (64), and the effective half-life of diazepam (Valium@, a related anti-anxiety agent) averages 90 hours in those over 80, compared to 20 hours in those under the age of 20 (23). These prolonged retention times have led geriatric pharmacologists to urge the prescription of shorter acting drugs at lower doses. 2 Although it is twice the recommended geriatric dose, the usual 5 mg dose of Valium (dizepam) is one of the most commonly prescribed drugs for those over 65 in a private prescription service (29), and more than 13 million prescriptions for Dalmane (flurazepam) were given to the elderly last year (64). Such figures do not indicate that the drugs are not useful, but do suggest that prescription patterns are not The use of \ery short-acting hypnotic agents is also prohlematir, in that patients may awaken from (rebound insomnia if the drug is metabolized and cleared rapidly. Resolution of proper practirr in prescribing h~pnotic agents thus awaits further inqoirjr. optimally tailored for the needs of the older population. Characteristics of drug use Those over 65 use more drugs than any other age group (36,43). Many chronic disorders such as arthritis or hypertension are treated with more than one drug. Many older people have multiple chronic diseases, each of which may be treated by drugs. There are more than 43,000 pharmaceutical products on the market, containing 1,900 separate chemical entities (39). The scant attention given to use of drugs peculiar to the elderly in medical practice is due in part to the fact that much drug information (e.g., information in the Physicians Desk Reference) is based on Food and Drug Administration (FDA) requirements for drug certification. At present, FDA drug approval does not require special attention to effects on elderly patients. (See Drug Testing below.) Side effects and adverse drug interactions The elderly have a higher incidence of drug side effects and drug interactions (2,20,33,38). The threshold of toxic blood concentration is lower among the elderly for many drugs, leading to increased probability of overdose. The presence of multiple chronic diseases and their treatment with multiple drugs lead to a higher incidence of adverse drug reactions and adverse drug interactions (36,43,58). This may be due not only to altered pharmacokinetics, but also to possibly increased susceptibility to adverse effects of drug usage resulting from altered inherent susceptibility among older people. A recent study of adverse drug reactions and interactions, which showed that they accounted for 3 percent of all hospital admissions, found this figure to be much higher for the elderly to 17 percent of hospital admissions for those 70 to 90. Of those suffering adverse drug reactions, 40 percent are over age 60 (cited in 54). Conclusions from the studies that have been performed cannot be generalized to the total American elderly population because they have been small and local. Generation of aggregate data on hospital ad-
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142 l Technology and Aging in America missions due to drug reactions is one benefit that may accrue from increased use of computerized medical information systems, and may permit more accurate policy determinations. Adverse effects are especially common for drugs used to treat cardiovascular and psychiatric diseases and so are used especially heavily by the elderly. Adverse drug reactions among the elderly have been roughly estimated to cost $3 billion per year (cited in 54). Some assert that side effects-of drugs may be more common among ambulatory patients than among hospital patients (33). Reporting of adverse effects is less reliable for ambulatory patients, and drug errors are more common outside the hospital. Increased home care may exacerbate the problem of adverse drug effects and noncompliance with prescription instructions. A different type of problem in geriatric drug use is the frequency of drug interactions. Drug interactions can occur between the drug and the patient (due to individual susceptibility), between the drug and numerous diseases (metabolism of drugs for one disorder altered by another disorder), between the drug and drugs for other disorders, and between the drug and a patients diet. Interactions between drugs and diet can cause problems in several ways (34). Drugs can affect dietary intake; certain antacids, used to quell stomach complaints, also lead to decreased absorption of phosphate, vitamin B I (thiamine), and iron (needed to make red blood cells) (42). Laxatives, often used to prevent constipation, can prevent the absorption of fat-soluble vitamins involved in blood coagulation and bone metabolism (see section on Nutrition inch. 4). Dietary habits can also influence the efficacy of drugs; diets high in yeast, liver, fish, whole grains, and certain vegetables can inhibit the effectiveness of drugs for Parkinson disease. Diets high in vitamin K, such as spinach, cheese, and liver, can reduce the efficacy of some drugs used to prevent blood clot formation (42). Foods high in the chemical tyramine, found in cheese, wine, and chocolate, can cause dangerous elevation of blood pressure for those taking some types of antidepressant medications. Such problems are not unique to older patient populations, but each of these drug groups is used more by elderly individuals (42). Although many drug interactions cannot be avoided, the increase of polypharmacy, the simultaneous use of multiple drugs, highlights current deficiencies in the use, retrieval, and storage of medical information. The problem of predicting and reporting drug interactions is an example; one computer analysis of drug prescriptions showed the potential for harmful drug interactions to be far in excess of those clinically reported (8). Present methods of monitoring adverse drug effects raise questions of whether untoward reactions are markedly underreported or whether the computer model is incorrect; both explanations may be partially valid. Technology can be useful in identifying drug interactions. A recent study that used a computerized prescription information service found that using the computer did not reduce the number of prescriptions with potential problems, but did shorten the time period needed to recognize and begin dealing with the problem (30). The application of sophisticated artificial intelligence to medical monitoring, in which computer programs, such as the RX program developed at Stanford University, (9,10) continuously investigate the patient record data base of a hospital or region, looking for possible medical effects from the use of a particular drug or group of drugs, is likely to be a major improvement. Such data analysis depends, however, on gaining access to statistics on the incidence of drug side effects in the population. Innovations arising from increased use of information technologies, such as smart cards or improved patient-centered information systems may enhance the ability to identify drug reactions and interactions. The present system, which relies largely on user, manufacturer, or physician reporting, requires that someone notice a causal relationship, and is especially unreliable when there is a long time lag between the start of drug administration and the development of an adverse effect (8,67). Development of effective methods of monitoring drug use in actual clinical practice may prove important in development of drugs for the elderly population. (See Drug Testing below.)
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Ch. 5Medications and the Elderly l 143 Photo credit Giant Food, Inc Pharmacists use the computer to spot potentially harmful drug use that can occur when people unknowingly mix medications. Patient compliance with drug prescriptions Elderly patients often fail to use drugs exactly as prescribed; 59 percent of patients in a recent survey showed some error in drug use (54). The most common error is omission (39), The probability of error rises among women, patients who live alone, those over 75, and those who use a great number of drugs or must take drugs frequently (54). Deviance from prescription instructions is also more likely among those who have numerous diseases, who have poor vision or hearing (17), and whose socioeconomic status is low. Diminished mobility (difficulty in getting to the pharmacy to fill prescriptions) and inattention from medical care providers may also contribute to noncompliance (39). Compliance with drug prescriptions is probably not affected by aging per se, but may be diminished by social and biological factors that become more common with age. If nothing else, the greater number of medications taken by older people increases the probability of deviating from instructions for at least one prescription, The treatment of chronic diseases with drugs taken over long periods clearly requires persistent patient and family participation and the strong motivation of both patients and providers; these factors may not be receiving sufficient attention at present in the medical community (39). Difficulties in communication between physicians and patients may be intensified by older peoples difficulty in hearing, understanding, or remembering instructions on drug use (17).
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144 Technology and Aging in America Some noncompliance is deliberate. The tremendous variation in reported rates of deliberate noncompliance ranges from 7 to 43 percent (69); one study found that 70 percent of errors were intentional (12). yet the high rates of deviation from prescription instructions do not always portend ill outcomes. Compliance rates vary tremendously, depending on drug type (69), and may at times be due to a judgment of appropriate treatment by the patient. Another study showed the most common reason for not taking medications to be thepatient's perception that he or she did not like or need them, which accounted for far more deliberate disuse than cost or presence of side effects (69). These two reasons accounted for 71.6 percent of patient-reported failure to follow a prescription. To the extent that patients can accurately determine their own needs for medication, such noncompliance may be intelligent. For example, some inappropriate prescriptions for excessive doses of hypnotic/anti+mxiety drugs, such as Valium and Dalmane @ may be partially corrected by patients taking fewer pills than directed. Noncompliance with prescriptions, however, is not generally laudable. Misuse of drugs, whether deliberate or unintentional, can lead to serious adverse effects, and, as noted above, to preventable hospitalizations. Child-proof containers may be difficult to open (15,39,41,44), and can thus cause compliance problems. New packaging for over-the-counter medications, instituted in reaction to the deliberate alteration of Tylenol capsules, may also make opening difficult for older people. However, such protective packaging can also be a blessing in preventing accidental or poorly conceived ingestion of drugs by patients with poor mental function (41), patients whose arthritis affects their hands are particularly likely to have difficulty opening child-proof containers, and should have easy -to-open containers ordered by their physicians. Correct administration of drugs is especially difficult in patients afflicted with dementia and psychiatric illness, for whom expectation of patientinitiated accuracy of drug administration is a vain hope. For these patients, the involvement of other family members is essential (41). The use of medication boxes, with drugs arranged for time of day and date by a family member or health professional can help; as can the use of charts with examples of the appropriate pill taped to the proper column. Prescription labels in lay language in large type on containers of different colored pills can also help avoid mistakes .There is great opportunity here also for technological innovation. New products relying on smart electronics to keep track of proper times for dispensing particular drugs are under development. One simple device in a relatively inexpensive bottle cap sounds an alarm when it is time to take the medication (Med-Tymer, Boston Medical Research, 1983). Other systems under development could dispense multiple medications on different schedules and notify patients when it is time to take a particuPhoto credit: Boston Medical Research, Inc.
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Ch. 5Medications and the Elderly l 145 lar pill. This would be helpful to all patients requiring multiple medications, and would be particularly welcome for patients with diminished mental function (although others would have to fill the prescriptions and program the mechanisms). Issues specific to mental function DEMENTIA CAUSED BY drugs affecting DRUGS AND DEPRESSION Depression may cause or complicate dementia (loss of higher mental functions) in 8 to 23 percent of patients who receive a diagnosis of irreversible dementia. This is partly due to inaccurate diagnosis, and partly to an increased prevalence of depression among demented patients (4 I). Further, drugs used to treat other diseases can cause dementia. Many drugs that block the effect of acetylcholine, 3 either as a primary effect or as an unwanted side effect, are used in the treatment of Parkinson disease, insomnia, hypertension (46), colds (32), depression, and psychosis (14). The rare syndrome of atropine psychosis) a severe form of mental reaction to certain anti-cholinergic drugs characterized by psychotic symptoms, may tempt a physician to treat the psychosis with drugs that can further worsen the patients symptoms (14). Much more common, however, is mild confusion induced by over-the-counter or prescription drugs that have mild or moderate anticholinergic actions. Drug-induced dementia is even more common as a cause of reversible dementia than depression (25). Drugs are thus the most common cause of this syndrome, which carries the awkward title of pseudodementia (20). Sedatives and hypnotic drugs often diminish intellectual function in patients at all ages, and are especially likely to do so among older people. Drugs given to correct other conditions, such as heart disease or hypertension, can also cause loss of mental functions by altering blood flow 3Acet~vlcholine is a molecule used to communicate between neme cells, and is implicated in memory processes. LcIss of brain cells that use it is found in some diseases, such as Alzheimer disease, that lead to dementia. Blocking of acetylcholine, ~tith drugs called anticholinergic drugs, might, therefore, lead to exacerbation of dementia and increase in confusion in susceptible patients, to the brain or by directly acting on brain cells. These effects are rare in younger age groups, but increase with age. DRUGS USED FOR MANAGEMENT EASE, RATHER THAN PATIENT BENEFIT There is some evidence that psychopharmaceuticals are used to make nursing home patients easier to manage, rather than to improve their medical condition. One study found that a small minority of physicians (1.3 percent) with large nursing home practices prescribed a large proportion (37 percent) of the anti-psychotic medications dispensed in the nursing homes sampled; the 14 percent of physicians who had 10 or more nursing home patients prescribed 81 percent of the anti-psychotic drugs (57). The prevalence of anti-psychotic drug use in this study varied widelymore than three-hundredfoldamong nursing homes. Usage increased with nursing home size, and was inversely related to the ratio of nursing home staff to patient (57), suggesting that antipsychotic medications may be used as a substitute for personnel in some institutions, Need for increased education of health care providers One way to improve the manner in which drugs are used is to educate the physicians who prescribe them. Such education includes not only instilling knowledge about proper use of drugs, but also increasing awareness among practitioners about the special biological and physiological characteristics of older patients. studies suggest that physicians may base more of their prescription decisions on drug advertisements than on scientifically verified studies (3). In response to this finding, a group seeking to promote appropriate prescription habits has borrowed the techniques used by pharmaceutical companies to promote the use of their drugsusing trained personnel to personally visit physicians to educate them about common prescription errors [4). Such methods are experimental, and some have questioned the appropriateness of this approach (45), but there is wide agreement on the need to improve physicians awareness of the importance of the vicissitudes of drug therapy among older patients.
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146 l Technology and Aging in America Recent data show that the use of physician advisors can be especially effective in changing physicians prescribing habits (59). A large recent study found efforts to change physician habits to be cost effective in saving funds for Medicaid. Costs of educational materials and personnel for educating physicians were $93 per physician per year, compared with $205 saved from Medicaid funds. The program was especially effective for those physicians who were the heaviest prescribers, and was received well by the physicians involved (61). Use of over-the-counter (OTC) drugs Many elderly people use OTC drugs: 70 percent of those 65 and over use some OTC medication regularly (64). Physicians are often unaware that their patients are taking OTC agents, either because patients do not inform them, or because they fail to ask (13). The most common drug in this class is aspirin, which is often used to treat the pain and inflammation associated with arthritis (13,35). Aspirin is one of the cheapest and most effective remedies for arthritis, but is also associated with ear and vision toxicity, loss of control of body heat, confusion, nausea, diarrhea, and gastrointestinal bleeding (13). Some patients, who also have asthma and nasal polyps, can have lifethreatening reactions to aspirin. Yet aspirin is ubiquitous; more than 200 products contain it, and some of them are not clearly labeled (13). Another common side effect of OTC medications is confusion. Many nonprescription drugs contain agents that block the effects of acetylcholine. Many nonprescription sleeping pills and anti-cold remedies contain agents that can induce confusion. The special biological and sociological characteristics of older populations may indicate a need for caution in converting drugs from prescription to over-the-counter status. For those drugs that are used primarily by older people, special attention to the incidence of side effects in the older subpopulation may be in order when deciding to make medications available to all consumers. patient information on drugs The need for active patient participation in treatment of chronic diseases requires improved methods of teaching patients about their treatments. In a recent FDA survey, 58 percent of patients received information on how to take their medication, but 75 percent received no information regarding potential side effects (48). Physicians in a recent survey believed that their patients were either very well (32 percent) or adequately (56 percent) informed about their medications (40), yet other studies show patients are often ignorant of important facts about their therapy (48). Patients rarely ask physicians about their drugs, but instead ask nurses, clerks, family, or friends (50). The transfer of information to patients is worse for older patients than for the general population, and especially poor for one group-old and less educated women (49). Poorly informed patients are unable to make rational decisions, and may experience unnecessary drug interactions. Lack of information from health professionals leaves patients vulnerable to the advice of uninformed or ill-informed acquaintances and family members. Some of the problems in communication may stem from the reluctance of patients to ask physicians for information: in the FDA survey, only 2 percent of the patients asked their physicians about their medications (48). Heightened sensitivity to the need for adequate patient education among health providers could improve the efficacy of treatment; greater assertiveness on the part of patients could diminish anxiety and aid in the treatment process by improving patient awareness of potential adverse reactions and contraindications. The recently formed National Council for Patient Information and Education (NCPIE) is addressing the need for increased involvement of patients in their treatment by encouraging patients to ask questions of their physicians. Current NCPIE strategy is to sponsor television and mass media advertisements (52). Other patient-information activities include community programs at the Albany College of Pharmacy, the University of Maryland, and the University of Michigan,
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Ch. 5Medications and the Elderly l 147 and in Los Angeles, San Francisco, and Osceola, FL (39). Many other communities not noted in national publications are also known to have developed special patient education programs for the elderly. Accompanying certain prescription drugs with information for patients became an area of Federal concern in 1981, when the FDA mandated the inclusion of information with prescriptions for cimetidine, clofibrate, propoxyphene, and seven other drugs. This requirement was reversed by Executive Order 12291 shortly after the start of the Reagan Administration in February 1981, although inserts are still required for several medications such as isoproterenol inhalants and contraceptives. The delay in implementation of Executive Order 12291 coincided with the start of the voluntary American Medical Associations Patient Medication Information program, in which physicians are to distribute patient information on drugs to their patients at the physicians expense. A recent survey showed that 22 percent of physicians who prescribe medications were participating in the program; 50 percent of physicians did not know about the program, and a small minority of older male physicians disagreed with AMA policy in distributing patient-information leaflets (31). Another program of patient education undertaken by the American Association of Retired Persons (AARP) has been especially effective. Medication Information Leaflets for Seniors accompany each prescription emanating from several mail prescription services available to AARPs 14 million members, who order more than 5 million prescriptions per year. The inserts, in leaflet form, explain the reason for taking the drug, how to administer it, what information the physician needs to properly prescribe it, contraindications and potential interactions with food and other drugs, and potential side effects. An early survey of recipients showed that although 24 percent of people either did not notice them or did not receive them; of those who did, 90 percent found the leaflets useful, 95 percent read them, and 76 percent kept them for possible future reference. Fears that providing patients with information about their prescription would increase anxiety were allayed by finding that 40 percent of those responding felt better about their medications, and 56 percent felt no different after receiving the leaflets (21,53). The package inserts were more extensively used for anti-hypertensive medications than for anti-arthritic agents or minor tranquilizers (51). The AARP drug leaflet is currently being comprehensively evaluated to determine its effect on patient attitudes, perceptions, and behavior (6). Patient package inserts may be especially helpful to older patients. A large and extensive Rand Corp. study of patient package inserts sponsored by the FDA found that older patients read them more often, resulting in a small but detectable increase in patient knowledge about medications (26). Patient package inserts can thus be useful, although questions remain about patients judgments of risk. Patients remember less about side effects than other aspects of the leaflets (26) and some patients have difficulty in accurately assessing the relative seriousness of risks (28). Patient education need not be restricted to leaflets included with the drug. Several pharmacies have taught classes, trained educators, arranged for educational programs, or written leaflets for their older patrons. Computer networks, as noted in chapter 6, may also encourage information networks on topics related to health. National and local press also serve an important function in highlighting new developments relevant to drug use.
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148 l Technology and Aging in America Congressional issues and options Background DRUG TESTING The FDAs drug approval process begins with laboratory discovery of a drugs action. Once a potentially useful new chemical activity has been discovered, tests of efficacy and toxicity are performed on animals. At this point, the manufacturer applies to the FDA for certification of the New Chemical Entity (NCE) to be tested in humans as an Investigational New Drug (IND). The agent is then tested for safety in a small number of relatively healthy volunteer patients, and long-term toxicity is measured in animals. This is called Phase I testing. If preliminary tests are successful, phase II trialslarger clinical trialsare undertaken in a small number of patients (100 to 300) to establish dosage range and efficacy, and as a further measure of safety. Phase III is usually the final stage of testing and involves carefully controlled trials and field testing in larger numbers of patients (500 to 3)000). Although the FDA can request further testing, the agency cannot require it. Adverse effects may be detected by the clinical trials; the probability of detecting a harmful effect depends on the number of patients tested, the frequency of the reaction, and the duration of the study (67). Elderly patients, who consume a large proportion of most types of drugs (7,38), are not specifically mandated for inclusion as patients during clinical trials performed for FDA approval. The trend in recent years has been to include more older patients in clinical trials (63), but there are no specific guidelines or regulations for assuring that clinical trials take account of the special drug needs of the older population. There are several reasons that inclusion of greater proportions of older patients might complicate clinical trials. volunteers and patients used in early trials must be relatively healthy to assure safety of the testing procedure. Although a more representative patient mix could be incorporated into later testing, elderly patients are likely to have several diseases, making it difficult to ascertain whether a new sign or symptom is in fact due to drug use rather than to a new disease or a new manifestation of an existing condition. And many older patients take other drugs, making it difficult to identify the particular drug that might be causing a problem. The high prevalence of disease among the elderly increases the noise level in drug reaction data, compounding the difficulty of detecting problems. In order to compensate for this factor, more patients must be included in tests; this pushes up development costs and makes analysis more difficult. problems in current methods of drug testing have been underscored by recent episodes of adverse reactions to antidiabetic drugs, and nonsteroidal anti-inflammatory agents for treating arthritis. The problem for these agents was lack of testing in populations similar to those that used the drugs in routine practice, although this was not necessarily due specifically to a dearth of older patients in the test groups. Both classes of drugs are used more often in the elderly, however, and representatives of each of these drug classes were recently removed voluntarily from the market by their manufacturers in the United States because of newly discovered adverse effects that were not found in premarket testing. Such problems might be minimized in the future by increased attention to premarket testing in representative populations, which in many cases will involve inclusion of older individuals. It is important to note that testing of drugs in patients over 65, if it is to be realistic, must be done in populations that have numbers and types of illnesses, average ages, and sex and racial balance similar to those groups that would actually use the drugs in practice (71). The most difficult aspect of testing drugs in elderly populations is assuring safety, The pharmacokinetic and pharmacodynamic differences between the elderly and younger cohorts are more likely to lead to overdose than to underdose, and the increased incidence of side effects among older populations adds to this risk. Modification of current regulations regarding drug testing in the elderly could focus on issues of safety, In connec
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Ch. 5Medications and the Elderly 149 tion with this, the FDA has recently proposed guidelines for testing of drugs in older populations. The guidelines stress including older patients in late (Phase III) clinical trials and analyzing clinical trial data with attention to effects of aging (62). The proposed guidelines focus on the most dramatic known differences between older and younger population groups, and do not emphasize questions of bioavailability, dosage forms, or tissue sensitivity of new agents specific to older patients (67). One potential problem with establishing adequate guidelines is likely to be determination that a truly representative population of older patients has been tested (71). Identification of drug interactions is especially difficult, but also important in older patient populations because of the larger average number of agents that such patients take simultaneously. In addition, it may prove difficult to test the safety of the longterm drug use in older patients who often take drugs for chronic conditions over months or years. Long-term administration of drugs for older patients may expose adverse effects that appear only after cumulative use that would have been absent in tests for premarket approval. The FDA will continue to seek advice on how to establish guidelines that satisfy both public demand for safety and industrial concern over increased costs of drug development and increased regulation (63). COSTS OF DRUG DEVELOPMENT The cost of clinical testing is the largest single hurdle between drug discovery and routine clinical use (16). A 1978 report estimates that development of a new drug costs an average of $54 million per drug marketed, which includes the cost of testing drugs that never reach the market (22). A more recent estimate is $70 million. The costs of new drug development vary widely, depending on the nature of the drug. Antibiotics cost less than $20 million to develop, because efficacy is easy to demonstrate, and animal models of infectious disease are readily available. Psychopharmaceuticals, in contrast, cost more than three times as much to developapproximately $70 million eachlargely because of costs of clinical testing and the absence of applicable animal models of drug action (11,19). These high development costs have led to calls for reducing the cost of clinical trials. It is important to rationalize the conflicts between patient safety and expeditious approval. Additional costs could lead to a reduction in the rate of introduction of new and useful drugs, but loosening safety requirements might be costly in patient health and welfare. Increased drug testing in the elderly might increase the costs of clinical trials, and thus of drug development. Such cost increases could range from adding tests of pharmacokinetics in older people, as suggested by the proposed FDA guidelines, which would require only a few added tests, to extensive epidemiological surveys, pharmacodynamic studies, and tests of potential drug interactions that would cost substantially more. Increased use of postmarketing surveillance could contribute to establishing drug safety and efficacy, and have the added benefit of focusing attention on the special problems of the elderly. Drugs could be monitored in actual use, thus identifying currently unknown adverse reactions, and adverse effects detectable by present methods might be found more quickly. Premarket test results could thus be supplemented, and premarket requirements might even be reduced in some instances; representative sampling of the elderly would be assured because monitoring would reflect actual clinical use. Safety would be encouraged by intensive surveillance. There are, however, problems with using postmarketing surveillance to assure safety; current methods of reporting adverse effects, for example, are unreliable (67). This may be crucial because safety is one of the most important reasons for the stringency of FDA clinical trial protocols. There is strong pressure to err on the side of safety, because the agency has limited power to recall drugs once they are approved (19,39,67). Monitoring of actual drug use is an important element of drug regulation in several countries. The international nature of pharmaceutical marketing suggests that monitoring of drug use is an important area for potential international cooperation that could benefit all countries involved. Some other nations already rely more on postmarketing surveillance than does the United States. Some of this increased reliance on postmarketing surveillance is ascribed to the presence
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150 Technology and Aging in America of central or national medical care delivery systems that increase physician-government contact and allow easier governmental access to patient and physician records (66). Because such mechanisms are not in place in the United States, effective postmarketing surveillance would require establishment of new means of monitoring drug effects in clinical use. Postmarked surveillance is not, however, solely a means of reducing the need for premarket testing; postmarked surveillance is also a mechanism for assuring safety independently of premarket approval practices. There are strong arguments for retaining current procedures for premarket testing of effectiveness and safety. The stringently controlled clinical trials now required improve the quality of evidence used in making treatment decisions: new drug therapies are instituted only after careful analysis, in contrast to many other treatment modalities. Elimination or reduction of the current premarket approval process could result in proliferation of poorly verified treatments. ISSUE 1: Should Congress require special testing of drugs in older population groups before approval for marketing? FDA requires demonstration of safety and efficacy before approving a drug or device for marketing. At present, this does not include explicit mention of testing in older population groups. Several drugs used primarily in older populations have recently been withdrawn from the market because of concern for patient safety, Yet testing of drugs in older patients adds costs because such patients have more complicated medical histories. This complexity determines that more patients must be analyzed to assure sensitivity in demonstrating efficacy or safety. Options: 1.1: Congress could continue present regulatory requirements. Many believe that present mechanisms of approval of drugs and medical devices are adequate for assuring public safety. 1.2: Congress could encourage inclusion of drug testing among older populations by oversight of FDA This would entail obtaining assurances that interpretation of current legislation would be changed to include emphasis on the needs of the older population. The emphasis on testing drugs could be changed, for example, by requiring pre market testing of agents intended for use in those conditions identified as highly prevalent among older populations. 1.3: Congress could create new legislation to mandate drug testing among older populations. This option would entail defining those conditions for which special testing is needed, and definition of the population to be protected. Option 1.1 would retain the status quo for drug testing. Options 1.2 and 1.3 would be intended to protect a special population group at risk of developing adverse reactions from drugs, but would do so at increased cost to pharmaceutical and medical device manufacturers, The guidelines proposed by FDA should entail minimal increased cost (62), but more stringent requirements would increase costs further. Increased development costs might lead to fewer new agents being developed, increased risk for investors, and disincentives for established companies to manufacture such products or for companies to newly address the affected markets. Nevertheless, cost savings to other groups, including the Federal Government, might occur if the incidence of adverse side effects could be diminished. Savings would result from preventing disability and lost productivity, as well as from avoiding those health care expenditures due to adverse effects of drugs. ISSUE 2: Should Congress require increased postmarketing surveillance of drugs already approved? Options: 2.1: Congress could continue present patterns of postmarketing surveillance. 2.2: Congress could encourage increased use of postmarketing surveillance. This option could include oversight of FDA activities, mandating new requirements for manufacturers and new authorities for FDA. These could be done either independently of or in combination with options discussed under drug testing.
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Ch. 5Medications and the Elderly 151 Mandating increased use of postmarketing surveillance for drugs and medical devices could be effective in monitoring the safety of such products in actual use. This is relevant to the general population, but especially relevant to older patients, in whom the risks of adverse effects, interactions, and complications are higher. Increased use of postmarketing surveillance would entail establishing better mechanisms for reporting adverse reactions, and might require altering FDA legislation to permit FDA to withdraw drugs found to be unsafe in actual use. One potential problem in this area is access to and analysis of drug information in Federal data systems. The Computerized On-line Medicaid Pharmaceutical Analysis and Surveillance System (COMPASS) at FDA, for example, is intended to permit rapid epidemiologic surveys of drug reactions, but has been fraught with technical problems. The National Institute on Aging, with the American Association of Retired Persons and the Andrus Foundation, is supporting research on computerassisted epidemiologic research on drug effects at Harvard Medical School (6). If Congress chooses to encourage postmarketing surveillance of drug use, more resources for epidemiologic data acquisition and information processing may be required; current university research may help determine the feasibility of monitoring for drug effects on a national scale. Implementation of requirements for postmarketing surveillance would raise development costs for each drug and device, and thus might reduce the incentives for innovation, as also noted in the discussion of drug testing. A more comprehensive discussion of postmarketing surveillance, which focused on the general population rather than the special needs of the older population, appeared in the OTA publication: Postmarketing Surveillance of Prescription Drugs, which also included specific legislative options (67). ISSUE 3: Should Congress encourage improved patient education regarding use of medications? Options: 3.1: Congress could refrain from taking action. 3.2: 3.3: 3.4: Congress could encourage FDA to issue patient package inserts on medications especially prone to misuse among older populations. Congress could mandate inclusion of patient package inserts on medications determined to be especially prone to misuse by older patients. Congress could encourage Department of Health and Human Services activities in the area of patient education. This could include public service messages, research support, and developement and dissemination of booklets. Increased patient education on medications is intended to prevent misuse by providing information to consumers. It can be accomplished by voluntary mechanisms, such as those of the NCPIE, AMA, and AARP mentioned above; through executive action, as taken by the Carter Administration and revoked by the Reagan Administration; or by legislative mandate. Those who believe that voluntary programs already under way are sufficient see no role for increased Federal intervention. Federal requirements would increase costs for those affected by such requirements. Mandating patient package inserts for medications, if supplied by the manufacturer, would increase distribution and production costs. Requiring patient education through other means, such as through physicians, pharmacists, or other health professionals, would increase the costs of their services. Increasing production and distribution costs could adversely affect incentives for innovation, as noted under other options. Increasing costs of health care would raise Federal outlays for such services. Conversely, cost savings might also be possible by preventing adverse side effects, interactions, and complications, as well as by reducing the number of hospital admissions for drug-related problems. ISSUE 4: Should Congress encourage improved education of health care providers regarding older patients? The special biological and social characteristics of older patients have been widely noted, yet little attention has been devoted to educating physicians and other health care providers about
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152 l Technology and Aging in America these characteristics (5). Increased knowledge of pharmacological differences between older and younger patients is one of many high priorities for educating health professionals about the special needs of the older population (1,24). Professional education has the potential to become one of the most effective methods of preventing future problems in drug use, and might also save some health care costs associated with drug reactions, complications, and interactions. Some educational programs directed at physicians have already been shown directly to reduce Medicaid expenditures for medications, even without taking into account the indirect savings from avoiding adverse reactions (61). The Federal role in educating health professionals is less prominent than State and local statutes regarding certification of practitioners and proper medical practices. There is, however, a Federal role in supporting training programs for basic and clinical research and through reimbursement policies affecting delivery of health care. The problem of insufficient knowledge and education about gerontology and geriatrics is global, affecting social as well as medical fields. Actions regarding this issue are thus only discussed; congressional options are part of a larger option of general education regarding geriatrics and gerontology in chapter 2 and other chapters of this report. ISSUE 6: Should Congress require improved labeling of over-the-counter medication ? Options: 5.1: Congress could refrain from taking action. 5.2: Congress could encourage action by FDA to require such labeling through oversight of FDA activity. 5.3: Congress could require FDA action by new legislation. Improved labeling of over-the-counter medications, especially aspirin and drugs with mental side effects, would allow consumers to avoid agents that contain ingredients to which they know they are sensitive. Special notice of changes in drug ingredients marketed under the same name might be beneficial in some instances. Special labeling might include warnings to specific classes of individuals, such as those subject to aspirin reactions or susceptible to drug-induced dementia. It could also encompass prominent listing of potentially hazardous reactions to ingredients. Such labeling might increase manufacturing and distribution costs, increasing the price of a product needed in high quantities by several groups of patients, especially those afflicted with osteoarthritis. Potential cost increases, however, might be defrayed in part or entirely by reduced incidence of aspirin reactions and side effects resulting from unknowing ingestion of compounds that cause confusion in susceptible patients. ISSUE 6: Should Congress authorize and fund more randomized clinical trials for drugs and treatments prevalent among older Americans? Options: 6.1: Congress could refrain from mandating funding of more clinical trials. 6.2: Congress could direct the Health Care Financing Administration (HCFA) or the National Institutes of Health (NIH) to support more randomized clinical trials, especially for those conditions requiring multiple agents or for conditions highly preva lent in the older population. 6.3: Congress could encourage or require third-party payers (e.g., health insurers) to fund some clinical trials. Older people are susceptible to multiple disorders, and often have conditions that can be treated in a multiplicity of ways. Treatments for such disorders as hypertension, osteoarthritis, and osteoporosis are common in the geriatric population, and yet optimal treatments for these conditions are often not apparent because of the plethora of potentially effective drugs and other treatments. Comparative studies of different treatment combinations are often not available. The large number of non-steroidal anti-inflammatory drugs, for example, have not been directly compared for relative overall efficacy, incidence of adverse side effects, and comparative appropriateness for patient subgroups. Several members of this group of drugs have not been compared with aspirin, the most common drug used for osteoarthritis, Drugs from this class have been
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Ch, 5Medications and the Elderly 153 recalled for unanticipated side effects noted in clinical use after approval for marketing, and two additional agents are currently under investigation by the Secretary of Health and Human Services. Clinical use of the different agents is a topic of current medical controversy. The standard method for dealing with such controversies is the randomized clinical trial, the acceptance of which marks one of the major advances of modern medicine. Careful studies of different treatments can be compared under controlled circumstances to establish the utility of competing regimens, and may also determine the lack of substantial differences between different modalities of treatment (68). Increased support for such trials, however, is likely to be quite costly. Supporting these trials from the NIH budget might detract from more basic biomedical research. Supporting trials through HCFA has been suggested, but would reChapter 5 references 1. Association of American Medical Colleges, quire a new allocation of resources within HCFA or increased overall funding for the agency. Increased support for trials could also be obtained through partial or full reimbursement by thirdparty payers. Savings from such research might be obtained both for the Federal Government and third-party payers through reduced incidence of side effects due to present suboptimal levels of treatment and by preventing unnecessary complications. The magnitude of savings, however, cannot be estimated because there is insufficient knowledge about current therapeutic practices and the potential for improvement in health that might arise from rationalizing treatment. A more complete discussion of the issues surrounding clinical trials can be found in the OTA Background Paper The Impact of Randomized Clinical Trials on Health Policy and Medical Practice (68). Undergraduate Medical Education: Preparation for Improved Geriatric Care, A Guideline for Curriculum Assessment (Washington, DC: AAMC, 1983). 2. Avorn, J., Lamy, P. P., and Vestal, R. E., Prescribing for the Elderly Safely, Patient Care, June 30, 1982. 3. Avorn, J., Chen, M., and Hartley, R., Scientific v. Commercial Sources of Influence on the Prescribing Behavior of Physicians, Am. J. Med., July 1982. 4. Avorn, J., and Soumerai, S. B., Improving Drug Therapy Decisions Through Educational Outreach, N. Engl. J. Med. 308:1457-1463, 1983. 5. Avorn, J., Drug Policy in an Aging Society, Heahh Affairs 2:23-32 (Mil.lwood, VA: project HOPE, 1983). 6. Avorn, J., Harvard Medical School, Boston, MA, personal communications, January and March 1984. 7. Bartus, R., Biomedical Needs of the Elderly, editorial sent to OTA, May 1983. 8. Block, L. H., Polymedicine: Known and Unknown Drug Interactions) J. Am. Geriat. Soc. Suppl. 30:s94-s98, 1982, 9. Blum, R. L., Discovery, Confirmation, and Incorporation of Causal Relationships From a Large Time-Oriented Clinical Data Base: The RX Project, Computers and Biomed. Res. 15:164-187, 1982. 10, Blum, R. L., Discovery and Representative of Causal Relationships From a Large Time-Oriented Clinical Data Base: The RX Project, thesis, Department of Computer Science, Stanford University, Report #STAN-CS-82-900, Stanford, CA, January 1982. 11. Cole, J. O., Outlook for New Drug Development) Physician Handbook on Psychotherapeutic Drug Use in the Aged, T. Crook and G. Cohen (eds.) (New Canaan, CT: Mark Powley & Associates, Inc., 1981). 12. Cooper, J. K., Love, D. W., and Rattoul, P, R., Intentional Prescription Non-adherence by the Elderly, J. Am. Geriat. Soc. 30:329-333, 1982. 13. Cupit, C. C., The Use of Non-prescription Analgesics in an Older Population, J, Am. Geriat. Soc. @@. 30:s76-s80, 1983, 14. Davis, J. J., Anti-psychotic Drugs, Physicians Handbook on Psychotherapeutic Drug Use in the Aged, T. Crook and G. Cohen (eds.) (New Canaan, CT: Mark Powley & Associates, Inc., 1981). 15, Ehrlich, G. E., Diagnosis and Management of Rheumatic Diseases in Older Patients, J. Am. Geriat. Soc. Suppl. 30:s45-s51, 1982. 16. Erikson, T., Arthur D. Little, Inc., address at Re-
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154 l Technology and Aging in America search and Development in the Global Pharmaceutical Economy, Institute for Alternative Futures, Apr. 11, 1983. 17. Fedder, D. O., Managing Medication and Compliance: Physician-Pharmacist-Patient Interactions, J. Am. Geriat. Soc. Suppl. 30:s113-s118, 1982. 18. Geweke, J., and Weisbrod, B. A., Expenditure Effects of Technological Change: The Case of a New Drug, manuscript from the Department of Economics, University of Wisconsin, Madison, 1982. 19. Grabowski, H. G., and Vernon, J. M., The Phar20, 21 % 22. 23 24. maceutical Industry, The Government and Technical Process, R. R. Nelson (cd.) (New York: Pergamon Press, 1982). Greenblatt, D. J., Divoll, M., Abernathy, D. R., and Shader, R. I., (Physiologic Changes in old Age: Relation to Altered Drug Disposition, J. Am. Geriat. Soc. Suppl. 30:s6-s10, 1982. Green Sheet, The, Weekly Pharmacy Reports, Chevy Chase, MD, Mar. 14, 1983. Hansen, R. W., The Pharmaceutical Development Process: Estimates of Development Costs and Times and Effects of Proposed Regulatory Changes) Issues in Pharmaceutical Economics, R. 1, Chien (cd.) (Lexington, MA: Lexington Books, 1979), pp. 151-181. Hollister, L. E., General Principles of Psychotherapeutic Drug Use in the Aged, Physicians Handbook on Psychotherapeutic Drug Use in the Aged, T. Crook and G. Cohen (eds.) (New Canaan, CT: Mark Powley & Associates, Inc., 1981). Institute of Medicine, Aging and Medical Education (Committee chairm;n: Paul B. Beeson), Publication IOM-78-04 (Washington, DC: National Academy Press, 1978). 25. Jarvik, J., and Reisberg, B., Drugs Prescribed To 26 Treat Cognitive Dysfunction, Physicians Handbook on Psychotherapeutic Drug Use in the Aged, T. Crook and G. Cohen (eds.) (New Canaan, CT: Mark Powley & Associates, Inc., 1981). Kanouse, D. E., Berry, S, H., Hayes-Roth, B,, et al., Informing Patients About Drugs (Washington, DC: Rand Corp., 1981). 27. Kasper, J. A., National Health Care Expenditures Study, Prescribed Medicines: Use, Expenditures, and Sources of Payment, Data Review 9, National Center for Health Services Research, U.S. Department of Health and Human Services, Hyattsville, MD, April 1982. 28. Keown, C. F., Risk Judgments and Intention Measures After Reading About Prescription Drug Side Effects in the Format of a Patient Package Insert) Journal of Consumer Affairs, 17:277-289, 1983. 29. Knapp, D., Food and Drug Administration, Public Health Service, U.S. Department of Health and Human Services, 1982: Geriatric use of drugs, Geriatric use of drug products lacking adequate evidence of effectiveness, and Geriatric use of drugs with psychiatric effects, papers prepared by FDA, not published because statistical analysis was not conclusive. The points made in this chapter do not depend on such statistical analysis. 30. Koepsell, T. D,, Gurtel, A. L., Diehr, P. H., et al., The Seattle Evaluation of Computerized Drug Profiles: Effects on Prescribing Practices and Resource Use, Am. J. Pub. Hlth., August 1983. 31. Lampe, K. F., Physician Interventions, presented at the Drug Information Association workshop on Geriatric Drug Use-Clinical and Social Perspectives, Washington, DC, Feb. 27, 1984. 32. Lamy, P, P., Drug Prescribing for the Elderly, Bull. N.Y. Acad. Med. 57:718-730, 1981. 33. Lamy, P. P., Comparative Pharmacokinetic Changes and Drug Therapy in an older Population, J. Am. Geriat. Soc. Suppl. 30:s11-s19, 1982 34. Lamy, P. P., ( Effects of Diet and Nutrition on Drug Therapy) J. Am. Geriat. Soc. Suppl. 30:s99-s112, 1982. 35. Lamy, P. P., Over-the-Counter Medication: The Drug Interactions We overlooked, J. Am. Geriat. SOC. th.qlp]. 30:s69-s75, 1982. 36. Lamy, P. P., Therapeutics and an Older Population: A Pharmacists Perspective, J. Am. Geriat. SOC. Suppl. 30:s3-s5, 1982 37. Lamy, P, P., response to OTA draft document, March 1984. 38. Lee, P. R., and Lipton, H. L., Drugs and the Elderly, contract report, University of California at San Francisco, August 1983. 39. Lipton, H. L., and Lee, P. R., Drugs and the Elderly, Administration on Aging Background Paper, draft, Office of Human Development Services, U.S. Department of Health and Human Services, September 1982, 40. Louis Harris & Associates, Patient Information and Prescription Drugs: Parallel Surveys of Physicians and Pharmacists, March 1983. 41. Mace, N. L., and Rabins, P. V., The 36-Hour Day (Bakimore: Johns Hopkins University Press, 1981). 42. McGandy, R., et al., USDA Human Nutrition Research Center on Aging, Tufts University, DrugNutrient Interactions, Nutrition and Aging, contract report for the Office of Technology Assessment, October 1983. 43. McGlone, F. B,, Therapeutics and an Older Population: A Physicians Perspective, J. Am. Geriat. Soc. Suppl. 30:s1-s2, 1982. 44. Medical Economics Co., Medication Mistakes and
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Ch. 5Medications and the Elderly 155 Noncompliance, Practical Guide to Geriatric A4edications (Oradell, NJ: Medical Economics Co. Book Division, 1980), pp. 93-138. 45. Melmon, K. L., and Blaschke, T. F., The Undereducated Physicians Therapeutic Decisions, IV. Engl. J. Med. 308:1473-1474, 1983. 46. Mendels, J., Antidepressants, Physicians Handbook on Psychotherapeutic Drug Use in the Aged, T. Crook and G. Cohen teds.) (New Canaan, CT: Mark Powley & Associates, Inc., 1981). 47. Meyer, B. R., Pharmacodynamic Risk Factors in Geriatric Drug Use, presented at the Drug Information Association workshop on Geriatric Drug Use--Clinical and Social Perspectives, Washington, DC, Feb. 28, 1984. 48. Miller, R. W., Doctors, Patients Dont Communicate, FDA Consumer, DHHS publication No. (FDA) 83-1102, reprinted July/August 1983. 49. Moore, S. R., Kalu, M., and Yavaprabbas, S., Geriatrics and Gerontology, Drug Intel]. Clin. Pharm. 17:920-3, 1983. 50. Morris, L. A., Grossman, R., Barkdoll, G. L., Gordon, E., and Soviero, C., Patient Receipt of Prescription Drug Information, OPE Study 67, September 1983. 51. Morris, L. A., and Olins, N. J., Utility of Drug Leaflets for Elderly Consumers, Am. J. Pub. Hlth., 1984. 52. National Council for Patient Information and Education, press releases and Task Force Reports, 1983. 53. Olins, N. J., press releases from the American Association of Retired Persons, Alexandria, VA, 1983. 54. Ouslander, J. G., Drug Therapy in the Elderly, Annals Int. Med. 95;711-722, 1981. 55. Palumbo, F., University of Maryland, Baltimore, personal communication, March 1984. 56. Paroles, H., opening address, Practical Approaches for Meeting the Mental Health Needs of the Elderly, Project HOPE, Millwood, VA, March 1983, pp. 23-24. 57. Ray, W. A., Federspiel, C. F., and Schaffner, W., A Study of Anti-psychotic Drug Use in Nursing Homes: Epidemiologic Evidence Suggesting Misuse, Am. J. Pub. H]th. 70:485-491, 1980. 58. Reidenberg, M. M., Drug Interactions and the Elderly,J. Am. Geriat. Soc. Supp]. 30:s67-s68, 1982. 59. Schaffer, W., Ray, W. A., Federspiel, C. F., and Miller, W. O., Improving Antibiotic Prescribing in Office Practice, J.A.M.A,, Oct. 7, 1983. 60. Simonson, W., Medications and the Elderly (Rockville, MD: Aspen Publications, 1984). 61. Soumerai, S. B., and Avorn, J., (Benefits and Costs of an Experimental Academically Based Detailing Program To Improve Drug Therapy Decisions of Office-Based Physicians, October 1983. 62. Temple, R., Discussion Paper on Testing of Drugs in the Elderly, FDA memorandum, Sept. 30, 1983. 63. Temple, R., FDA Clinical Guidelines for Geriatric Testing) presented at the Drug Information Association workshop on Geriatric Drug UseClinical and Social Perspectives, Washington, DC, Feb. 28, 1984. 64. Thompson, T. L., Moran, M. G., and Nies, A. S., Psychotropic Drug Use in the Elderly, N. Engl. J. Med. 308:134-138, 194-199, 1983. 65. Trapnell, G. R., National Health Insurance Issues: the Cost of a National Prescription Program (New York: Health Issues, sponsored by Roche Laboratories, 1979). 66. U.S. Congress, General Accounting Office, FDA Drug ApprovalA Lengthy Process That Delays the Availability of Important New Drugs, HRD-8064, May 28, 1980. 67. U.S. Congress, Office of Technology Assessment, Postmarketing Surveillance of Prescription Drugs, OTA-H-189 (Washington, DC: US. Government Printing Office, November 1982). 68. U.S. Congress, Office of Technology Assessment, The Impact of Randomized Clinical Trials on Health Policy and Medical Practice-A Background Paper, OTA-BP-H-22 (Washington, DC: U.S. Government Printing Office, August 1983). 69. U.S. Department of Health and Human Services, Alcohol, Drug Abuse, and Mental Health Administration, National Institute on Drug Abuse, Treatment Research Report: Drug Taking Among the Elderly, DHHS publication No. (ADM)83-1229, 1982. 70. U.S. Senate, Special Committee on Aging, U.S. House of Representatives, Select Committee on Aging, and the Subcommittee on Health and LongTerm Care, S. Hrg. 98-392, Drug Use and Misuse: A Gro~ng Concern for older Americans, June 28, 1983. 71. Williams, T. F., Setting the Agenda for Geriatric Drug Research, presented at the Drug Information Association workshop on Geriatric Drug Use Clinical and Social Perspectives, Washington, DC, Feb. 27, 1984. 38-800 0 85 6
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Chapter 6 Information Technology and the Health of an Aging Population Introduction The information revolution has profoundly affected business and commerce, recreation, education, security, and social interaction. Until very recently, this revolution has had little apparent effect on most of our health institutions and practices. Yet information technology has changed the entire health system and is a distinctive element in all fields of health. These fields and contributions include: l l l l l l l medical educationaccess to biomedical data bases; public health and biomedical research-computer modeling and statistical analysis; health care delivery-construction of diagnosis-related groups; patient care access to computer-assisted diagnostic systems; information managementmedical information systems; occupational healthepidemiological analyses; and patient education-computerized health risk appraisal instruments. Although the rate at which information technology has been incorporated into the health care system has been less rapid than predicted 10 or 20 years ago, it is now clear that it will be an increasingly important part of this system at all levels. 1A previous OTA report has defined information technology to include communications systems such as direct broadcast satellite, two-way interactive cable, low-power broadcasting, computers (including personal computers and the new hand-held computers), and television (including video disks and vrideo tape cassettes) (62). Because of space limitations and the importance of the computer as an access tool to health information, this report more narrowly defines information technology as (the application of computers and telecommunication systems to the creation, storage, manipulation, and dissemination of information. Relatively little attention has been devoted to applying information technology to the specific health needs of the older population, which stands to benefit significantly from its various applications. Information technology can enhance functions diminished by the aging process in the healthy elderly, improve health care for those with acute and chronic medical problems, and enrich the health care services that traditional health care institutions and professionals provide. It can also disseminate information on maintaining and improving health and on the availability of services in new environments such as home and community centers. Because there are as yet few examples of the application of information technology to the health needs of the older population, this chapter focuses on the potential use of information technology. The contribution of information technology to specific health fields, such as patient care and public health, can be extended to their gerontological components. Technological limitations will be overcome in time. The scarcity of current information technology specific to the elderly underscores another focus of this chapterthe future elderly. There are profound differences in responsiveness to any technology, including information technology, depending on age. In 10 to 20 years, the elderly are likely to have a completely different view of information technology than their counterparts have today. The difference will be even more dramatic when the computer generation becomes eligible for Medicare, In this context, it is important to recognize the heterogeneity of the older population. Older Americans vary widely in such areas as financial status, health status, and levels of enthusiasm, Many older people look upon computers as another of lifes opportunities and challenges (33), while others 159
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160 l Technology and Aging in America find it difficult to adapt to the lifestyle changes they can bring. This chapter restricts the definition of information technology to computers and telecommunications, and focuses on information technology as used by elderly individuals for their health care, either alone or, most often, in conjunction with a physician and other health professionals. Information technology can be used both to promote preventive behaviors and to help manage chronic conditions. Discussion of its role in the health of Americas elderly is important for a number of reasons. The use of information technology by the patient for health purposes has received minimal attention to date, although a large body of literature, including reviews, has looked at information technology in terms of other health fields, albeit without an age-related focus. OTA has produced two such publications, Computer Technology in Medicated Education and Assessment (64) and Policy Implications of Medical Information Systems (65). As the U.S. population ages, more people will need assistance in functioning, particularly at home. The number of elderly people confined to bed, barring unforeseen changes in disease patterns, is expected to rise from 458,000 in 1977 to 658,000 in 2000. The number of those needing help in getting around their own homes will rise from 1.9 million to 2.7 million during this period, and a similar increase is expected in numbers of those who are limited in carrying out some activities of daily living (19). Some 2.8 million elderly now need the help of someone else to carry out one or more of their daily activities (70). When adapted to the specific needs of the elderly, information technology can be a primary source of such assistance. The growth of the elderly population will intensify demands on the U.S. health care system, producing significant increases in hospitalization, the use of hospital-based services, and nursing home care (19). By directly assisting with home health care and providing access to information concerning care for the elderly, either at home or on an ambulatory basis, information technology can reduce todays heavy reliance on highcost institutional services. Information technology is expected to increase the role of the elderly in their own care by improving their access to health information and services. Such technology will be used at home, in physicians offices, clinics, or in hospitals by the elderly, either alone or with the assistance of others, including health professionals. One form of information technology, networking, z has the potential to greatly improve their social interaction, mental health, and access to health and other information. This chapter discusses what is known about information technology and its use by the elderly for health purposes, including the cost of providing the technology. Two major factors underlie such use by the elderlytheir ability to use information technology and the extent to which they participate in their health care. Networking (computer networking) is the transmission of data either to human users or to other computers through connections that link a telecommunications system. In this way, computers can transmit data throughout the Nation and the world, sharing work and data among groups of linked computers. The elderlys ability to use information technology The ability to use information technology such as the computer varies considerably with the older individual. Those with active minds are likely to relish the acquisition of new knowledge: a computer club in Menlo Park, CA, teaches elderly members to program computers as well as to operate them (33). The Elderhostel program at Reed College, which is limited to persons over 62.
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Ch. 6information Technology and the Health of an Aging Population l 161 offers a hands-on introduction to personal computers as one of its summer residential academic programs for older adults (49). Even the less adventurous older person may welcome operating a computer for health purposes. The level of computer literacy needed to obtain health information need not be high, and the older individual often has assistance; in a community setting, other people are usually available to help. Home use could be facilitated by a family member, neighbor, or a paid or voluntary visitor. Difficulties with independent use of the new technologies may thus be limited to a small segment of the elderly population. Although more than 60 percent of those over 85 have major limitations in activity, this proportion is lower at younger ages. The size of this group is further reduced by the fact that with the exception of visual, neurological, and muscular problems, most of the limitations of those over 85 generally would not constrain their use of a computer terminal. There has been little study of the ability of older individuals to use computers in general and still less about their ability to use computers for health care. Available evidence indicates that some elderly people enjoy programming and applications software, such as spreadsheets, and others enjoy recreational computer games and communicating by means of computers adapted to their capabilities. A 1980 study of computer communication and the elderly found them highly receptive to using the computer and appreciative of the control that it afforded them. Interactive communication with other users was preferred over computer games by the subjects, who were residents of an urban retirement hotel. Their favorite game was highly interactive and simulated personal communication. The system required a number of modifications for the older users, including a large display screen and large characters on the keyboard. The presence of a trained computer demonstrator in a small group setting during the initial stages facilitated the learning process. The researchers concluded that additional modifications to the hardware, such as color-coded keys, would increase user satisfaction (18). A more recent examination of computer use by the elderly was conducted during a series of workshops held in 1983 in Washington, DC, and surrounding suburban areas (38). A total of 200 individuals, ranging in age from 60 to 95, attended at least one of 14 workshops. The study population was recruited from educational programs for the elderly sponsored by churches, nursing homes, and recreational centers. The response was extraordinarily enthusiastic. To the surprise of the researchers, these older computer users obtained the greatest satisfaction from the programming portion of the workshop. They were apt learners and had the patience required for the task. The participants also enjoyed applications software, such as spreadsheets, but were not interested in most computer games. The study
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162 l Technology and Aging in America indicates that at least one segment of the elderly populationthose who are active and enthusiasticare more than ready for the computer age. Another study found that the frail elderly can also benefit from information technology. A study of 50 elderly nursing home residents, whose average age was 85 and who had moderate mental and physical impairments, found that these frail elderly were able to participate in computer games that had been especially adapted for them. Adaptations included slowing down the game so that residents with such handicaps as impaired vision or hearing, tremors, or hemiplegia could enjoy winning. Most of those who were asked to participate were willing and eager to try the computer games; all were willing to try them a second time. The study points out that visual symbols in video games for the elderly must be large and well defined and auditory clues distinct and clear, and that these can be used to exercise and improve memory, enhance hand and eye coordination, and increase ability to concentrate on a task (77). Although most of todays elderly, or, for that matter, most of todays middle-aged, have had little experience with computers, the evidence, though scant, indicates that they are receptive to using the new technology, either as is or when tailored to their needs, The elderly of the future are likely to be more open to using computers because of exposure to them throughout their lifetimes. The development of new computer and communications technologies for those who are functionally limited is taking place at an astonishingly rapid pace. Computers incorporating features to counteract eyestrain or more serious vision problems are now available commercially. Oversized video displays are relatively inexpensive, but keyboards with large keys are usually custom built and costly (50). Other approaches include enlarging the letters on present keyboards or colorcoding letters when only a few input commands are needed. Display interaction-the use of light pens to obtain information from a computeris potentially useful for elderly individuals who find it difficult to use a keyboard. The light pen, used in conjunction with a softwaredriven menu that appears on the screen, is pointed at the item of interest in the menu, which is then displayed on the screen. Even severely functionally limited elderly people can make contact with a computer by utilizing a sophisticated light pen that need not make physical contact with the screen in order to activate the computer. The pen is under development for those handicapped by high-level spinal cord injuries and cerebral palsy, or for amputees, among others (28). Another substitute for a keyboard is the touchsensitive terminal. The user simply touches a sensitized television screens computer-generated menu to obtain audio and visual information. Hewlett-Packard is marketing a touch-sensitive system, Bell Laboratories has installed one at Epcot Center for use as an information system by visitors, and Bostons Sheraton Hotel uses one to provide information to its guests on in-hotel services and activities. Many homes are expected to have them by the mid-1980s. Voice-activated systems that enter data and receive output on microcomputers are rapidly improving in both price and performance, with accurate representation of speech likely by the 1990s (62). Although the capability of current systems to recognize speech is limited, computers can be programmed to recognize a specific voice and follow simple commands. Another new technique, the transparent access approach, is being used to give handicapped people access to standard hardware and software programs (73). The approach allows a specialized modular design of input and output devices for the handicapped but gives access to software and hardware designed for the general public.
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Ch. 6information Technology and the Health of an Aging Population l 163 The elderly and self-care The use of information technology for health purposes by older individuals is also bounded by the extent of their involvement in their health care, either through selfware or through self-help groups. About 75 percent of all health care is estimated to be self-care (41), which substantially eases pressures on the health care system. Self-care and self-help, as information-based health care activities, are becoming increasingly recognized as legitimate sources of care in the United States (21). Although definitions of these concepts vary, self-care can be generally defined as (actions that we as individuals perform on behalf of our own, our familys, or our neighbors well-being (72). An individuals interest in being in control of his or her own health care is often considered to be the basis of self-care. This concept can be applied to all levels of health care, including care provided through the use of high technology (40). It also applies to care taken in consultation with health professionals; this application has received the greatest degree of approval from health professionals and appears to be the most appropriate for an elderly population. Self-help groups are (clusters of persons who share a common condition, and who come together to offer one another the benefit of their experience and mutual support (72). Broadly defined, these groups may total several hundred thousand in the united States (37). A recent inventory which used a more restrictive definition identified more than 2,000 U.S. programs offering medical self-care instruction (21). Self -care encompasses a broad variety of activities, ranging from: 1) daily health practices, such as brushing teeth; to 2) increasing ones knowledge about health through such sources as magazines, pamphlets, and health fairs, and acting upon the information received; to 3) assuming tasks traditionally found in a health professionals realm of practice. This last mode of self% are usually requires formal training in which health skills, such as measuring blood pressure and heart rate, are learned (15). The delegation to patients of certain tasks usually performed by professional caregivers has long been routine. Diabetics of all ages test their urine and give themselves insulin injections; persons with angina medicate themselves with nitroglycerin. Physicians and the Federal Government encourage women to undertake periodic self-examinations for breast cancer (66). Patients undergoing continuous ambulatory peritoneal dialysis are directly involved in their treatment at home (60). Health education programs, usually initiated by consumers, disseminate a wide variety of skills, such as showing parents how to obtain throat cultures from their children, and teaching women how to take a pap smear or do a pelvic exam. Computer and communications technologies are expected to play an increasingly important role in enhancing the ability of people of all ages to perform tasks traditionally done by professionals. Although self-care and self-help programs afford wide opportunities for improving general health, many serious issues remain unresolved. These include questions on the degree of commercial involvement in the programs and the extent of professional involvement and support. Participants may feel that there is too much professional input into some programs; physicians are often concerned about the lack of a significant professional component (15). Additional issues include the political implications of certain programs, and problems of evaluating the effectiveness of any program in improving health (21). Few self-help programs are designed specifically for the elderly, but many existing programs appear to be appropriate for their needs. An important factor in the growth of self-help groups has been the shift in disease patterns from acute to chronic illness. Chronic disease requires greater reliance on the individual, who must actively and continuously modify his or her lifestyle in order to cope with the burden imposed by the disease. Self-help groups are singularly suited to the care of chronic diseases, and many such groups (e.g., the Reach for Recovery Program of the American Cancer Society and the Cardiac Rehabilitation Group of the American Heart Association) have
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I Technology and Aging in America been established, largely as a result of private funding. Although the prevalence of chronic disease among the elderly is high, few organizations have as yet taken cognizance of the special needs of the elderly (15). Self-care is also well suited to health promotion and disease prevention in terms of health risktaking behavior. Selfware education can reduce the probability of disease, disability, or premature death from a number of illnesses in which lifestyle has been shown to play a role. The unique circumstances of the elderly make it essential that self-care education be structured to accommodate their specific requirements and expectations, yet little has been accomplished in this area. Preliminary estimates from a large-scale effort to identify self-care and self-help programs in the United States found at least 25 self-care programs specifically focusing on training or activities for the elderly. Many other programs for the elderly include self-care as part of the curriculum. The programs vary in sponsorship and setting, target group, method of implementation, type and size of staff, and goals and activities (21). Data on the use of information technology in these programs are not yet available (20). Futurists contend that the use of computers and telecommunications will promote a change away from specialist care to self-care (43,56). At the same time, enhanced interest by consumers in self-care and their greater awareness of health and the value of health information will be important factors in their decisions to use information technology for health purposes. The Federal Government has played a relatively minor role in promoting self-care and self-help among the older population. The National Institute on Aging (NIA) published an excellent pamphlet on self-care and self-help for the elderly in 1980 (72), and both the National Institute of Mental Health and NIA have provided grants to train paraprofessionals to help organize self-help groups among older people. Also NIA recently began the funding of research into the nature of older peoples behaviors and attitudes (68) in using three levels of health care. The emphasis will be on self-care and informal care and their relevance to health and disease in older people, regardless of whether the behaviors have in fact been found by epidemiological studies to be risk behaviors. NIA has also begun accepting proposals under the Small Business Innovation Development Act for self-care research projects for the elderly. The projects are aimed at increasing the self-sufficiency and sense of well-being of older individuals by enabling them to gain confidence in their ability to prevent and manage many of their health conditions. One project would develop a blood pressure self-care modality based on systematic training and education in dietary, exercise, and relaxation techniques. participants would be compared in their ability to control or modify their blood pressure with their counterparts in a conventional medication program (Grant Application to the Small Business Innovation Program, 8/83). Information technology for health purposes Computer-assisted health instruction The use of computer-assisted health instruction is a logical extension of self-care/self-help. The growing use of information technologies for educating the public about maintaining health, and preventing or treating disease, is rapidly increasing the number of software programs on health education and management-diet, exercise, drug interactions, etc.that can be run on a home computer (8). The relevance of this technological phenomenon for use by and for the elderly has not yet been widely recognized in either the private or public sector, however. The use of information technologies, particularly the microcomputer, could help the elderly maintain independent liv-
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Ch. 6Inforrnation Technology and the Hea/th of an Aging Population l 165 ing, and is likely to be particularly effective when used in conjunction with physicians and other health care providers. Current efforts to develop such technology specifically for use by the elderly are hampered by lack of interest and lack of funding, but a few projects are underway. A specialty group associated with the American Association of Medical Systems and Informatics, for example, has a specific interest in health assessment of the elderly and automated systems for this age group. Their focus is on information systems support for older Americans, with an emphasis on health promotion and disease prevention, and on developing a computer-assisted personal health management system for promoting the concept of wellness of the elderly (12). Although very little computer-assisted software health instruction material is being developed specifically for the older population, health software is being produced by all sectors, including the forprofit, not-for-profit, not-for-profit with for-profit sponsorship, and by firms or academic institutions with a wide variety of expertise. A relatively large number of such products has been developed for mainframe computers, and the number of such programs for microcomputers is beginning to grow. The rapid expansion of personal computer capabilities has catalyzed the development of software packages to the extent that the Office of Disease Prevention and Health Promotion of the Public Health Service publishes a list of health promotion software for health educators, other health professionals, and individuals interested in developing good health habits. Topics include basic living skills, general health information, health risk appraisals, stress management, and nutrition and diet (70). Most of the software programs, which are not evaluated, are marketed by for-profit firms and few are inexpensive. The issue of costs and individual application of information technology, including software, is discussed later in this chapters As in any new product area, problems abound. The field is diverse and unsettled. In some cases, 3 A computer monthly has also published an article listing a number of commercially available nutrition, diet, and fitness software programs (23). programs are developed by transient entrepreneurs who lack subject knowledge and are often forced out of the market. A large number of colleges and universities have developed health instruction materials and are marketing or planning to market their products. Most available software programs have not been evaluated, but the serious issue of establishing evaluation criteria is beginning to be addressed (32). TYPES OF INSTRUCTIONAL PRODUCTS, DEVELOPERS, PRODUCERS, AND SETTINGS Private sector health software programs vary widely in both content and pricefrom nutritional programs that cost as much as $700 (69) to weight control and nutrition programs that help users balance meals and create weekly menus for $39.95 (55). Diabetics, for example, can purchase $100 software programs that focus on their daily fluctuations of blood sugar and insulin. In the nonprofit sector, the Kellogg Foundation is funding the development of health education and promotion software for use by adolescents and their families, primarily in clinic settings. Topics include alcohol and drug abuse, stress management, smoking, diet and exercise, human sexuality, and family communications (10). The program is being systematically developed, tested with control groups, and evaluated; a preliminary report on its effect on the health knowledge, attitudes, and behaviors of adolescents is scheduled for early 1985. Manufacturers of the Apple computer have sponsored the development of a number of health information programs at Ohio State university. When one such program, Kardia, which describes risk factors for heart attack, was assessed by patients in the waiting room of a family practice clinic, 95 percent found it acceptable. patients had to access the program and interact with the material presented; 91 percent said that it was both helpful in providing an understanding of health and very easy to use (17). A software package developed at the Abbott Northwestern/Sister Kenny Institute, in cooperation with a firm with expertise in microcomputer courseware technology and educational methodology, illustrates how information technology can
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166 l Technology and Aging in America be adapted to the needs of a particular population, in this case hospital patients with low back pain. The Institute is a major medical center that is both an acute care facility and a rehabilitation center; a considerable proportion of its patients suffer acute and chronic low back pain. The software takes the physical status, learning readiness, and motivation of the patient, and the resources of the health care facility into account. The microcomputer is accessible to patients at all hours, so that patients can use it when they are not in pain, and is portable so that the keyboard can be used easily from a wheelchair or at bedside. Segments of the course are short to accommodate to the patients comfort level and attention span. Upon leaving the hospital, the patient better understands the problem and has received instruction for lifestyle adaptations to protect himself from further injury. The courseware is currently being marketed through the Institute and a computer consulting firm (16). A computer-based education program for patients with rheumatoid arthritis, written at the University of Connecticut School of Medicine, is one of the few programs that has an evaluation component (78). The programs initial evaluation found that participants demonstrated more positive changes in knowledge, self-reported compliance behaviors, and affect than did a control group. The interactive program is stored on a mainframe computer located at the universitys health center, where it can be accessed by telephone from terminals located at any site, and is written in lesson format. Although the program was not developed for the elderly, it does make some provisions for them. A planned software program on osteoarthritis will have several access features for older patients, such as a largetype option, a cutout template that is blocked off and color coded for different functions, and, possibly, a speech synthesizer (57). The use of computers for in-hospital health education appears ready for major expansion. The American Telephone & Telegraph Co. (AT&T) is exploring the potential for developing computerized health educational materials with Johns Hopkins Hospital and other facilities. Little detailed information is yet available about the project, which is in the planning stage, but it may utilize video disks, and a software program instructing patients in post-heart attack management maybe developed (51). Software packages for health hazard/health risk appraisals (HHA/HRA) are also proliferating. The HHA/HRA is a technique for health promotion in which the user fills out a questionnaire and then receives information on his or her health status and recommendations for change. The appraisal rates the users chances of becoming ill or dying from selected diseases by comparing selfdescribed health-related behaviors and personal characteristics to mortality statistics and epidemiological data (74). The appraisal is designed to motivate individuals to change their lifestyle and improve their health (22), but because it generates a statement of probability and not a diagnosis, it can present problems (26). Many consumers lack the expertise needed to distinguish between risk factors and diagnosis and may not understand the information they receive. Thus some researchers contend that computer-assisted appraisals are best when part of a comprehensive program that might include face-to-face interaction with health professionals and written explanatory materials (47). Few HHA/HRAs have been developed for the elderly population, although a number of instruments are available to health professionals for use in assessing the general functioning of their elderly patients (36)42). Numerous self-administered scales have been developed to measure psychological conditions in the aged (36), and computer games could be devised to measure various aspects of aging, such as cognition (35). Because many database and methodological problems are associated with the construction of health risk appraisals, their use is controversial (74). Even when coupled with programs known to decrease the prevalence of risk indicators, it is not known whether appraisals will in fact yield dividends of healthier, more productive people and reduced expenditures related to illness, disability, and premature death (26). As is the case with many health care technologies now in use, their role and value have yet to be fully evaluated. There are also unique problems associated with using health risk appraisal instruments for todays
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. Chapter 6 Information Technology and the Health of an Aging Population
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Contents Page Introduction . . . . . . . ~ . . . . . . . . 159 The Elderly's Ability to Use information Technology. . . . . . . . 160 The Elderly and Self-Care . . . . . . . . . . . . 163 Information Technology for Health Purposes . . . . . . . . . 164 Computer-Assisted Health Instruction. . . . . . . . . . . 164 Computer-Assisted Patient-Health Professional interactions . . . . . 167 Access to Computer-Assistecl Information and Care . . . . . . . 171 Federal Activities . . . . . . . . . . . . 173 Research Needs . . . . . . . . . . . . . . . 174 Conclusions . ... . ... . . . . . . . . . . . 174 Congressional Issues and options . . . . . . . . . . . 175 Chapter 6 References . . . . . . . . . . . . . . 179
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Ch. 6information Technology and the Health of an Aging Population 169 instruction as by a therapist (1), there is also concern that some programs may simply delay recovery in some cases (76). The elderly, particularly the home-bound elderly, could profit from the availability and accessibility of computer-assisted mental health instruction. Home computer use could greatly enhance their ability to obtain reliable assistance with psychological problems and anxieties that are often overlooked and untreated. Effective computer-assisted instruction in the mental health field, as in all health fields, will require the guidance of professionals in the development, use, and evaluation of self-help programs. Information technology can also assist health professionals with the care of the dependent elderly, who are a minority of the over-65 population, yet use a disproportionate amount of this age groups health services. Frail individuals would benefit from the availability of personal health software that combines diet, exercise, and stress monitoring. They could establish their own biochemical profiles to determine efficacy and safety of particular drugs for themselves (9), and develop diets appropriate for their health maintenance. Some members of the older population have multiple chronic health problems that require extensive care and treatment (70). Some 77 percent of the elderly have annual Medicare reimbursements of less than $500, but 8.8 percent have average Medicare payments of more than $3,000 (7). Computer-assisted health care that complements professional care may enable chronically ill people to remain in their homes when they wish to do so. About 45 percent of the noninstitutionalized elderly presently face limitations caused by chronic disease. Although this proportion is not likely to change dramatically, the total number of those limited by chronic disease is projected to rise sharply as the over-65 population grows from 27 million in 1983 to 35 million in 2000. The oldest group of elderlythose over 75, who need the most careis growing even more rapidly. In 1965, 37 percent of Medicares elderly enrollees were over 75; by 1981, this proportion had risen to 41 percent (58). A number of factors point to an increase in the proportion of the chronically ill population who may choose home care over institutional care in the future. An estimated 15 to 20 percent of todays institutionalized elderly could be living at home if home health services were available and reimbursable. Such services are gradually becoming reimbursable through a number of funding sources, such as Title XX of the Social Security Act and Title III of the Older Americans Act, Services are also becoming available as a result of the phenomenal growth in segments of the home health care industry. According to the National Homecaring Council, the number of homemaker/ home health aide service programs has grown from 300 in 1972 to more than 5,000 in 1984 (45). Moreover, advances in medical technology now allow services to be provided at home that once required an institutional setting (2). Reductions in size and complexity have made many machines portable. By the late 1980s, consumers are expected to spend at least half a billion dollars annually for electronic devices to be used in the home for health monitoring and disease prevention (9), Use of these devices will be limited, however, by the need for accurate diagnosis of illness, which requires training and knowledge to interpret the results of the instrumentation (46). Telecommunication equipment connecting patients and health professionals will facilitate their interaction and enhance the quality of care. Increases in the supply of U.S. physicians may counteract the need for computer-assisted professional care, since one reason for such care is physicians disinterest in making house calls. Government estimates indicate an aggregate surplus of physicians by 1990 that will persist into the 21st century (71). Nonetheless, the specific services needed for the homebound elderly may not be available. These projections also point to a shortage of general psychiatrists by 1990 and a near balance in the numbers of family practitioners and osteopathic general practitioners at that time. But the projections did not analyze geriatrics, nor did they account for geographic variation in physician-population ratios. Thus, a surfeit of physicians would not ensure adequate numbers to meet the special needs of either the elderly in general or the homebound elderly in particular.
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. 170 Technology and Aging in America Among the health information surveys now available at home is CompuServe, which gives subscribers access to a medical bulletin board that includes listings of health professionals, and affords physicians an opportunity to exchange information. Future applications of such technologies to the needs of specific patients, particularly homebound patients, are likely to be extensive. Instructions on patient care can be programmed for use in the home by the patient or a family member when needed, which may enable home health agencies to reduce the number of home visits by nurses and other health professionals. One exciting application would redefine the term house call by connecting homebound patients with physicians offices; physicians and other health professionals would then be able to make electronic house calls. Few of these efforts have been directed at the needs of the elderly, but research in such fields as rehabilitative medicine provides insight into the potential for using information technology to give older individuals special care. Adapting technologies for the elderly can be extremely difficult because this population is so heterogeneous, and because the introduction of a technology into their lives must often be accompanied by an educational effort to convince the patient of its utility. An interactive system of medical monitoring between the patients home and the professionals office can be designed in a variety of ways. For example, the computer periodically calls patients and prints out routine questions. If the response is abnormal, unusually slow, or not given, the computer notifies the appropriate health professional. In a similar system, Lifeline, which is now operational, the patient wears a lightweight transmitter that is electronically linked to a health care institution 24 hours a day. To call for help, the user presses a button on the transmitter, sending an electronic signal to the health care institutions computer. The computer identifies the user, notes the time of the signal, and personnel monitoring the system use the information stored in the computer to determine if help is needed. The system automatically sends a signal to the computer if it is not reset twice each day. Other examples of medical technologies that can be connected to computers, thereby assisting health professionals with patient care, include analog signals from both mechanical and electrical devices that can be converted to digital signals for transmission to health professional computers. If desired, the health professional can transmit information back to the patient or directly to the device, Future medical technologies may operate digitally as do products currently in use, such as watches and bathroom scales, thereby eliminating the need for conversion of signals from analog to digital systems. Smart sensorsthose incorporating microprocessors-currently sense and measure blood pressure, pulse rates, body temperature, and electrical activity of the heart, Measurements of other physical functions have been developed for use in rehabilitating handicapped patients; those that have the potential for computer-based processing may be applicable for monitoring the health status of segments of the older population. For example, a patient with a spinal cord injury who has returned home from the hospital can be monitored for the number of times and length of time he or she is out of bed by means of a pressuresensitive ribbon switch located under the mattress and a strip chart recorder (30). A protocol for computer-based monitoring of such chronic problems has been developed that would enable a physician to monitor the patients movements (54). Periodic measurements of the movements of a partially bed-bound elderly patient would assist a physician in evaluating the patients progress. Computer technology can enable hospital-based approaches for managing chronic diseases to be expanded to the home. A study of cirrhotic ambulatory patients found that they were able to systematically measure and communicate medically and behaviorally significant information (54). A health aide telephoned the data to a laboratory, where they were entered into a computer terminal and analyzed. The method can be used with many chronically diseased patients, and helps involve them in assessingand potentially managingtheir chronic diseases. When adapted for direct linkage to a computer and utilized for an elderly population, the rapid processing of data
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Ch. 6information Technology and the Health of an Aging Population l 171 provided by ambulatory patients from their homes can promote continuity of care approaching that provided in hospitals. Various computer and communication technologies can be used within the home setting for health purposes without involving consultation with health professionals. Computers that monitor such household functions as turning lights, radios, and televisions off and on, and provide wake-up service by voice synthesizers that speak pre-programmed messages (52) could be programmed to remind elderly persons of medication times, instruct them on diet and medical care practices, and remind them of physician and other health professional visits. Devices could be programmed to track medicinal intake and periodically dispense medicines. A bedside automated programmable dispensing machine has been developed for use in hospitals (s) that may be adaptable for use in the home (6). Access to compute-assisted information and care Information technology is expected to enhance the independence of the older population, including the home-bound elderly, but the extent to which older individuals will have access to computer-assisted information and care is conjectural. For example, their current level of access to the type of information technology known as intersite networking is not known at present. In intersite networking, a home or office terminal and modem are connected to a mainframe by means of a telephone or cable; the Lifeline system and arthritis self-care program are two examples. AT&T has conducted preliminary experiments in providing health information in a home setting by networking homes to regional mainframes, but as is traditional in the private sector, information is proprietary and the company has released only scanty information on the developmental process. The number of elderly who have access to terminals or microcomputers in the home is not known, essentially because the age of individuals owning or having access to personal computers has not been determined. Estimates of the projected penetration of U.S. homes by computers vary widely. A 1983 study estimates that approxA Photo credit: Lifeline Systems, Inc., Watertown, MA One type of home-based alarm system is directly linked with a central computer. imately one-fourth of U.S. households will have personal computers by the late 1980s, and a 1979 study by the University of California estimates that at least half of the projected 97 million households in the United States will have them by the end of the decade (8). A third study expects this proportion to exceed two-thirds (8,39). OTA has calculated that by 1986 there will be almost 5 million personal computers used in the home (62). Estimates of the current number of home computers in households also vary substantially. The Wall Street Journal estimates the number as 4.2 million, the InfoCorp at 5.5 million, and Future Computing and the Yankee Group, market research firms, estimate the number as approximately 7.5 million (39). Although prices for home computers have declined steadily, a major constraint to their access by the older population may be cost. A 1982 report on prices of personal computers found a range from several hundred to several thousand dollars (62). Hand-held computers sold for a few hundred dollars. Although they are deficient in a number of characteristics, such as size of display area, hand-held computers could be designed to connect with other hardware devices and to be linked over a phone line to a larger system in a physicians office, clinic, or community organization.
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172 Technology and Aging in America Prices for personal computers of similar capability are continuing to fall. It is currently possible to purchase a Commodore 64 with a disk drive at a discount store for about $400, which is less than the price of most color television sets. A Home Teller program initiated by the Madison National Bank in Washington, DC, offers an installment purchase plan for the Commodore 64; by maintaining a $1)000 interest-free balance and paying $15 a month, a customer can access his or her banking information and own the computer in 36 months. The Chemical Bank in New York and Californias Bank of America offer similar plans (4). As soon as the bank customer receives the computer, it can be used for other purposes, including health purposes. There is little consensus on future computer prices. Software programs for personal computers continue to improve and their prices to decline, but whether this trend will continue is unclear. Perhaps the greatest unknown at this time is the future price of telecommunication services. The price effects of the breakup of AT&T have yet to be determined. Whatever the future costs of computers, software, and telecommunication services, some members of the elderly population will not find them affordable or attractive, even for health purposes. Although income levels vary widely among those over 65, the elderly tend to be concentrated at the lower end of the income distribution, as shown in table E-II in appendix E. Nonetheless, income, as but one measurement of monetary assets, does not indicate total financial worth. Both savings and committed expenditures will influence the purchase of information technology. Many members of the older population own their own homes and have either paid off their mortgages or are doing so at low interest rates. Their health expenditures, however, are higher than those of any other age group. Many members of the elderly population will have access to software programs in libraries or community settings, and those who are still employed are likely to find computers in the workplace. Current estimates by International Data Corp. establish the ratio of computer terminals to office workers at 1:5; by the end of the next decade the ratio is expected to be 1:2. A major obstacle to accessing computer-assisted instruction and care is the incompatibility of equipment. Software programs are usually written for specific microcomputers. The fact that they cannot be transferred between different machines, a problem for users of all ages, is particularly acute for those over 65 because of the scarcity of programs for their use. Older individuals who have functional limitations have additional access problems in that they often find it difficult TO use computers designed for the general public. More than 11 million visually impaired Americans of all ages (most are over 55) find it difficult or impossible to read information on conventional display screens (3). About half of all Americans who have hearing loss in one or both ears are over 55 and are often unable to understand spoken messages on the terminal or from a computer terminal; many cannot hear the beeps some computer programs produce. Many older individuals whose mobility is restricted also find it difficult to reach the equipment or have trouble with keyboard control. Awareness of the need for special equipment for the handicapped has risen significantly in recent years (73). For the most part, specialized equipment to enable handicapped individuals of all ages to use information technology has not been produced by mass market manufacturers because the demand for such technology has been difficult to demonstrate. Available demographics do not delineate the true number of elderly individuals with specialized needs because older people with functional limitations are not accurately represented in the census or other surveys. Many of those who have limitations cannot respond to surveys because of their limitations-e.g., deafness. Of greater importance is the complexity of payment arrangements for adaptive computer technologies. In almost all cases they have not been considered health devices by Medicare and Medicaid. The availability of appropriate private insurance coverage depends on a number of factors, including employment and State laws. Until now, specialized equipment has been manufactured by thin market manufacturers or has been custom-made, and is not inexpensive (11). Advances in the field are so rapid, however, that it is impossible to forecast the size and configura-
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Ch. 6information Technology and the Health of an Aging Population 173 tion of the market in even the very near term. For example, only one company manufactured key guards in January 1984. By April 1984, there were seven brands of key guards on the market. significant developments in alleviating some of the problems of the functionally disabled are the improvements in standardizing the connections between adaptive devices and commercially available computers and in providing access to standard software programs for those using assistive devices. whether it is Governments role to intervene on behalf of those older persons who would benefit from the accessibility to health services that computer and telecommunication services would afford is a matter of resource allocation. 4 At this time of Federal financial constraints, Federal resources are not sufficient to provide all technologies to all people who need them. Money that is applied in one area of technology limits that available for other areas. Conversely, it is appropriate for the Government to assist with providing goods and services that the private sector cannot. important considerations in making decisions concerning information technology for the aged include: 1. the degree to which encouraging independent living for the elderly is a priority of Federal resource allocation policy, Z the cost effectiveness of information technology, and 3. the extent to which information technology will encourage independent living for the elderly. Federal activities The level of Federal involvement with information technology and the aged has been minimal. The National Institute on Aging (NIA) of the National institutes of Health (NIH) has sponsored the development of information systems in nursing homes in its teaching nursing home program. OTA has been able to identify several projects that 4 A recent OTA report provides a comprehensive view of the Governments role in technology for the handicapped (63). the Federal Government may sponsor that directly address the use of information technology by the elderly for health purposes. One project, still in the planning stage, will investigate the use of microcomputers and computer games to improve elderly peoples mental and social interaction. It may be submitted to NIA under the Small Business Innovation Development Act (public Law 97219). Under the same program, the NIA has received a number of proposals for automatic drug dispensing systems that utilize computer technology. The use of information technology would be appropriate for other programs for the elderly now under consideration. In planning for a national health promotion campaign for the aged, the Office of Disease Prevention and Health Promotion of the U.S Public Health Service and the Administration on Aging are sponsoring a project aimed at identifying effective ways to communicate health information, particularly on nutrition and fitness, to older people, emphasizing actions that promote health and prevent disease. A current NIA grant and contract solicitation calls for grant applications for research projects designed to identify specific modifications of the social environment, including the home, that may improve the health of middle-aged and older persons (67). Listed as a possible area of investigation is research on technological changes that can be introduced into homes to maintain independent living for frail, older people. In addition, a special grant announcement soliciting proposals to demonstrate and evaluate the impact of covering prevention services in the Medicare program was published in the Federal Register on August 12, 1983. The announcement calls for studies of Medicare reimbursement for a package of prevention services, including health education/promotion services. The Federal Government has been involved in other fields that have relevance to information technology for the elderly. For example, the Government has played a role in the research, development, and diffusion of information technologies for the handicapped (63). As has been noted, information technology developed for the handicapped can in many cases be used by the elderly.
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174 l Technology and Aging in America The Federal Government has also played a part information technology developed to instruct rein information technology for education in gentarded children, such as memory aids, could be era] and for special education (62). Some of the adapted for use by the elderly. Research needs To make the most effective use of information technologies (computers and communications technology) for the elderly requires investigating areas that range from the physical sciences to the social sciences. Current research needs include: l l l l The effectiveness of selfware/self-help, health education and the specific techniques of HHA/ HRA, and home care in promoting and maintaining health and monitoring health care among the elderly. Computer-assisted programs in these areas need special attention with respect to both development and evaluation. The economic implications of self-care and self-help. The ability of various subgroups (by age, by general health status, and by disability) within the elderly population to use computer and telecommunications technology. The development of new and adaptation of current computer and telecommunications technology to the needs of particular subgroups of the older population, according to age, general health status, and disability. Conclusions A major consideration in formulating policies regarding information technology to be used by an elderly population is matching technologies to users. Appropriate technologys is a Clear need In a previous report, OTA used the term appropriate technology to refer to technology that is developed or adapted in response to the needs, desires, and capabilities of disabled people and applied appropriately. The same concept of appropriate technology is used here to refer to appropriate technology for elderly people. It is also recognized, however, that the elderly are an extremely diverse group that includes many older individuals for whom there may be no need to adapt the technology used for the general public (63). Methods of involving the elderly in the development and delivery of information technology, Methods of encouraging the development and transfer of current and future computer and communications technology to the older population. Of particular importance are proper interactions between the public and private sector to ensure equitable access of elderly persons to information technology, especially those with functional limitations. Methods of reducing financial barriers (within reasonable restraints) to the acquisition of appropriate information technology by the older population. The application of artificial intelligence to interactive computer programs. The evaluation of software programs for safety, effectiveness, and instructional strategy (discussed further in the Congressional Issues and Options section at the end of this chapter). in many cases. Also important are the reactions of society and its institutions to existing and future technological capabilities and its willingness to assume financial responsibility for diffusion of various technologies. As has been stressed throughout this chapter, society has thus far placed little emphasis on the research and development of information technologies specifically for use by the elderly, either alone or in conjunction with health professionals. The preceding list of research needs testifies to the absence of rigorous information. Interest in
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Ch. 6information Technology and the Health of an Aging Population 175 this area, which has been lacking in the field of information science, is now beginning to surface. Professionals who work with the elderly have begun to realize the assistance that information technology can afford their clientele. Awareness of the potential of information technology in assisting with the health of the elderly population, and cooperation among information scientists, gerontologists, and other pertinent specialists are both very much in their infancy. The information technology that is available has been developed for other populations, such as the general public, the business community, health care organizations, or the handicapped. Much of it can be adapted to fit the needs, desires, and capabilities of the elderly. Although it is sparse, there is convincing evidence that older people can benefit from using computers. Indeed, many of todays older individuals are completely comfortable with the new technology. The elderly of the future will find computers much friendlier, in both a technological and a social sense. Information technology can be used by those over 65 for health purposes in two major ways. One is computer-assisted health instruction. The use of computer-assisted health instruction for the population in general is new, and scant attention has been paid to developing programs for specific populations, such as the elderly. Although the market is growing, the number of software programs currently available is very small, and few have been evaluated. The market is complex in terms of the vendors of such programs. Some programs are developed and distributed by forprofit firms whose substantive knowledge of the subject matter or ability to produce a quality product may be questionable. Other programs are being developed under the aegis of university programs and subsequently marketed. A minute proportion of such programs specifically address the needs of those over 65. Information technology can also be used to assist health professionals in monitoring the care of older adults. Many available and emerging technologies can be adapted for interactive use by the elderly and health professionals. Yet there remains too little recognition of this potential use, either by manufacturers of the equipment or by their distributors. Society is on the verge of applying concepts developed in other areas to the needs of the elderly. The time is thus propitious for developing policies that will make a significant contribution to the research, development, and diffusion of information technology appropriate for use by and for older individuals. The appropriate utilization of information technology by the elderly is not, however, inevitable. A key consideration in formulating policies regarding information technology to be used by those over 65 is societys commitment to the use of present and future technological capabilities. Although it is an avowed goal of Federal policy to keep the elderly out of institutions and promote their independence, there are substantial costs involved in the research, development, and diffusion of information technology for the older U.S. population. These costs need to be evaluated against helping the senior members of society continue as viable participants in its processes (48). Congressional issues and options ISSUE 1: Should Congress assume major renot require new legislation because sufficient ausponsibility for assuring the quality thority has already been written into law. Rather, of computer-assisted health instrue desired actions could be stimulated by congestion for the elderly? sional interest or oversight. These policy options are intended to assure the The principal question to be addressed is the quality of computer-assisted health instruction for extent to which the Federal Government should the older population. Most of the alternatives do be involved in activities concerning the quality of
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176 l Technology and Aging in America computer-assisted health instruction for the elderly. The use of the technology for all age groups, and particularly the older population, is in a very early stage of development. It is not yet a viable means of promoting, maintaining, or monitoring the health of the older population. But beneficial health-related software programs for this population can be forthcoming if adequately fostered. Because of the possible physical and financial vulnerability of those over 65, the quality and credibility of the content of health-related software programs for this age group require attention. The Governments role could depend on the types of computer-assisted health programs for the elderly, which vary along a number of parameters. Of particular relevance for the quality issue are the specificity and uniqueness of a programs content, Quality and accuracy of information are necessary to all computer-assisted health education, including gener~ instructions on broad subjects, such as good health habits, the nutritional value of foods, and HHAs/-lRAs. Quality assumes still greater significance in software programs that instruct individuals on managing specific health conditions with counseling, drugs, or medical devices. Quality is also an essential component of an individualized software program that instructs a person on the care of his or her particular medical problem. Because, however, such programs usually require continuous consultations with and revisions by a health professional, some aspects of quality control are informally in place. Options: 1.1: The private sector could assume responsibihtyfor the quality of the content of health instructional software for the elderly. Although computer-assisted health instruction is not a new technology, there is as yet no formal mechanism in the private sector to oversee the safety and effectiveness of the content of software programs. Computer-assisted health instruction has been used for a number of years for the education of health professionals. In the early 1970s a number of software programs for the general public appeared on the market, but most were of poor quality and did not achieve commercial success, Interest in the technology has resurfaced with the diffusion of microcomputers into clinics, offices, schools, community centers, and homes. It is conceivable that, if left undisturbed, market forces might eventually eliminate quality deficient health instructional software programs. But todays potential market for computerassisted instruction is large and poorly informed. The rapid diffusion of the microcomputer throughout society has given millions of people, including older people, access to computerassisted health instruction that did not exist 10 or 15 years ago, As the number of people with access to computers soars in the future, the number of users who lack the expertise to properly evaluate the content of instructional programs will also rise. Government involvement in generalized descriptive programs that do not differ from published materials would be hard to justify because of the protection afforded publications by the First Amendment. But reputable developers of computer-assisted health instructioniil material attempt to produce programs that do not mimic published matter. The nature of the computer allows for an interactive exchange between the user and the program, which is rarely possible between the reader and a book or other publication. proficient software developers thus attempt to invoke active user participation in constructing their software programs. Whether the Government can assume a role with respect to the quality of interactive instructional software programs has not been determined. A serious issue arises about actions to be taken in cases where incorrect or inexact information is used in software programs that instruct individuals how to manage mental health problems and how to use drugs or medical devices to manage medical conditions. such information may adversely affect the health status of the user. Because of its general role of protector of the public and its specific role of user of and payer for health technology, the Government is concerned with issues of safety and effectiveness. And the Goverment has found it necessary to assure the safety and effectiveness of health technologies, such as drugs and medical devices, on which the life or death of the user may depend.
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Ch. 6information Technology and the Health of an Aging Population l 177 1.2: 1 .2,a: Congress could encourage Federal involvement in validating the quality of the content of health instructional software for the older population. Congress could require that the Food and Drug Administration(FDA) regulate the safety and effectiveness of the content of all health instructional software for the elderly. The FDA is currently responsible for regulating the safety and effectiveness of all new drugs and certain medical devices before they are marketed. There is also legal precedent for the FDA to classify certain types of software as medical devices (34). Although manufacturers of medical devices are required by law to conduct tests of safety and effectiveness using FDA guidelines, the definition of effectiveness employed by FDA has limited utility for evaluating the health effects of medical devices under general conditions of use. On the one hand, FDA considers a device to be effective when, on the basis of well-controlled investigations or other valid scientific evidence, the device is shown to have the effect claimed by the manufacturers under the specified conditions of use (21 U.S.C. 260(c)(3)). On the other hand, the Health Care Financing Administration (HCFA) judges the effectiveness of a medical device in terms of its ability to improve health. Thus some devices approved by FDA for marketing purposes are not covered by HCFA for payment under Medicare or Medicaid (79). The FDA does not have a policy governing the regulation of software used in computer-assisted health instructional programs, but the FDA Task Group on Computers and Associated Software as Medical Devices is studying the issue (31). The problem is determining which types of programs can be considered medical devices. Preliminary decisions are that information management systems and programs that merely transfer information, such as databases, are not medical devices and thus not subject to FDA regulation. Software that describes self-testing, diagnosis, or treatment may be considered to be a medical device except in cases where the software merely copies instructions, i.e., serves as an automated book. If the content has been manipulated in any way and concerns diagnosis or treatment, current thinking holds that the software may be considered a medical device. l.2.b: Congress could charge another established governmental body, or create another governmen tal body, with responsibility for regulating the safety and effectiveness of the content of software for health instructional material not concerning drugs or medical devices for the elderly or for all health instructional software. There is no Federal agency, including the FDA, specifically charged with evaluating surgical and medical procedures, including therapeutic counseling, before such services are performed. The quality of the service is governed by the governmental licensure and professional certification of the providers of the service, and the professional accreditation of the providers educational facilities. Medicare coverage also serves as a minor control of the safety and efficacy of surgical and medical procedures as well as drugs and devices used for the elderly (61). HCFA requires a determination-a coverage decision-f the safety and efficacy of technologies before it will reimburse providers for their use with Medicare beneficiaries. The FDA does not currently have the expertise to regulate medical products other than drugs and devices. However, as noted previously, the agency is considering the issue of regulating instructional software. The staff could be expanded to include professionals who have the requisite expertise, or professionals from other agencies who have content knowledge could be consulted. Creating a separate body for this one purpose runs counter to current administrative philosophy and operations. 1.3: Congress could stimulate the development of standards for assessing the safety and effectiveness of content of software for computer-assisted health instruction programs for the older popula tion. (This option is independent of options 1.1 and I.2). Recognized formal standards for use in evaluating the science base or the instructional strategy embedded in computer-assisted health instructional programs for the elderly have not been developed by either the public or the private sector. The director of the Office of Disease Prevention and Health Promotion has decried the lack of a science base and evaluation of the soft-
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178 l Technology and Aging in America ware used for health education programs (44). He notes that many programs have been written by persons with inadequate background in health or health education, and are not being properly reviewed. Moreover, the quality of the instructional notebooks of computer-assisted health programs for the older person has received little attention. Because the way in which information is presented affects the use of the information, a program needs logic and completeness. The task is timely and costly. Although there is a need to address the problems associated with the development of health instructional software, the field is too new to have created voluntary standards to cope with such rapid technological change. 6 At the present time there is marginal activity among members of the academic community in establishing standards to evaluate the quality of health instructional software (14,32). As has been noted, the FDA is classifying types of software as to their standing as medical devices. At the same time, the FDA is developing standards for assessing those software programs that are classified as medical devices. However, the standards to be used by the FDA in future evaluations are expected to be limited to assessment of the algorithm, or computing method, used in structuring the software program and in implementing the program. If an algorithm relies on various tests of predictive accuracy, including both sensitivity and specificity, the program should perform satisfactorily. However, as a 1981 report by the General Accounting Office (GAO) points out, assessment of an algorithm does not always assure that the science content of a software program is accurate. GAO noted a number of cases in which FDA had evaluated a software program and the medical devices were defective because the software program used by the manufacturer in the medical device was based on calculations unacceptable to the scientific community (59). Even if the FDA were to expand and modify its evaluation methodology, the FDA process for developing standards has proven very cumbersome. 6 Voluntary standards are generally established by private sector bodies and are available for use by any person or organization, private or governmental (OMB Circular A-119, revised, Oct. 26, 1982). For example, no mandatory performance standards have been developed for Class 11 medical devices since Congress passed the Medical Device Amendments of 1976. Indeed, the 1981 GAO report notes the need to develop alternatives to FDAs performance standards so that assurance can be given within a reasonable period of time that the software of medical devices in general operates as expected. Neither current nor proposed FDA activities preclude the development and use of standards by the private sector, which has initiated many standards in the health field. voluntary standards can be used in various ways, In some cases, voluntary standards are used solely by their developers, usually an industry, to guide the development of its products and services. In other cases, they have formed the basis of governmental standards; e.g., accreditation standards of the Joint Commission on the Accreditation of Hospitals (JCAH) are the basis for Medicares conditions for hospital participation in the program. JCAHS accreditation standards are also used by the private sector to assure the quality of hospital care. Many professional groups and private enterprises are involved in the research and development of software programs for health instruction purposes, and their number is growing. There is, however, insufficient official communication among the organizations, and no one type of organization has taken the lead in developing voluntary standards for use in evaluating the quality of the content of health instructional software. One way in which Congress could encourage the process of developing criteria for use in evaluating health instructional materials for the elderly is to encourage the convening of a conference or workshop on the problem. Participants could represent all interested parties, including manufacturers of computers and software, software programmers, researchers in computer science and education, health professionals, educators, consumers, and relevant Government bodies. The conference would illustrate congressional recognition of the need for evaluation standards, initiate a process for their development, and facilitate the cooperation of those with expertise in their formulation.
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Ch. 6information Technology and the Health of an Aging Population c 179 Chapter 6 references 1. American Fami!\~, Experts Say Role of Health Professionals To Change Drastically With Use of Home Computers, 6(8):1-4, September 1983. 2. Andrews, L. B,, and Levin, L., Self-Care and the Law, Social Policy, January-February 1979, pp. 44-49. 3. Arkansas Rehabilitation Research and Training Center, University of Arkansas, (Access to Information-Age Technologies, January 1984, mimeo. 4. Bandfield, Lynn, Madison National Bank, Washington, DC, personal communication, December 1983. 5. Barker, K., Pearson, R., Hepler, C., Smith, W., and Pappas, C., (A Controlled Study of the Effect of an Automated Bedside Dispensing Machine on Medication Errors, presented at the American Society of Hospital Pharmacists 18th Annual Midyear Clinical Meeting, Atlanta, GA, Dec. 8, 1983. 6. Barker, K., Chairman, Department of Pharmacy Care Systems, Auburn University, School of Pharmacy, Auburn, AL, personal communication, No~~ember 1983. 7. Bennerr, H,, Silverman, H. A., and Dobson, A., Medicare: Health Insurance for the Aged and Disabled, 1976-78, Summary Utilization and Reimbursement by Person, Health Care Financing Administration, in press. 8. Bezold, C., Computers in Medicine, vol. 12, No. 4, 1983. 9. Bezold, C. (cd.), Pharmaceuticals in the Year 2000: The Changing Context for Drug R&D (Washington, DC: Institute for Alternative Futures, 1983). 10. Bosworth, K., Gustafson, D. H., Hawkins, R. P., Chewning, B., and Day, T., Adolescents, Health Education, and Computers: The Body Awareness Resource Network (BARN), Health Education/ Microcomputers, October 1983. 11. Brady, M., Trace Research and Development Center, University of Wisconsin, Madison, personal communication, April 1984. 12. Buffer, L., Office of Geriatrics, Ohio State Universit y School of Medicine, College of Medicine, personal communication, January 1984. 13. Bulletins on Science and Technology for the Handicapped, vol. 3, No. 1, April 1982, and No. 2, winter 1982-83. 14. Burson, J., Standard Review Units in a CAI Materials Appraisal Process, interim report, unpublished, undated. 15. Butler, R. N., et al., Self-Care, Self-Help and the Elderly, International Journal of Aging and Human Development 10(1):95-117, 1979-80. 16. Canine, J., and McWeeny, M., Microcomputer Patient Education Courseware, unpublished. 17. 18. 19. 20. 21. 22. 23. Chen, M. S., Jr., Houston, T. P., and Burson, J. L., Microcomputer-Based Health Education in the Waiting Room: A Feasibilit y Stud ti y (Columbus, OH: Ohio State University, Division of Computing Services, 1983). Danowski, J. A., and Sacks, W., Computer Communication and the Elderly, Experimental Aging Research 6(2):125-135, 1980. Davis, K., Health Implications of Aging in America ) paper prepared for the Office of Technolo~y Assessment, conference on the Impact of Technology of Aging in America, Feb. 16-18, 1983. DeFriese, G., Health Services Research Center, University of North Carolina, personal communication, October 1983. DeFries, G., and Woomert, A., Self-Care Among U.S. Elderly: Recent Developments, Research on Aging 5:3-23, March 1983. Fielding, J. E. (cd.), Appraising the Health of Risk Appraisal, AJPH 72:337-340, April 1982. Friefeld, K., Body Management, Personal Computing, August 1983, p. 60. 24. Geiss, G., Experts Say Role of Health Professionals To Change D-ramatically With Use of Home Com25, 26. 27 28. puters)Arnerican Family 6(8):1-4, September 1983. Gianturco, D. T., and Ramm, D., Use of the Computer in Caring for the Elderly, Postgraduate Medicine, August 1971, pp. 140-49:59. Goetz, A. A., Duff, J. F., and Bernstein, J. E., Health Risk Appraisal: The Estimation of Risk, Public Health Reports, vol. 95, No. 2, March-April 1980, pp. 119-126. Griest, J., Experts Say Role of Health Professionals To Change Dramatically With Use of Home Computers, American FamilV 6(8):1-4, September 1983. Gunderson, J., A Headpointing Technique for Use With Standard Computer S~stems: The LongRange Optical Headpointer, Trace Research and Development Center for the Severely Communicably Handicapped, University of Wisconsin, Madison, July 1983. 29. Gustafson, D. G., Kestly, J. J., Greist, H. H., and Jensen, N. M., Initial Evaluation of a Subjective Bayesian Diagnostic System, Health Services Research 6:204, 1971. 30. Halstead, L. S., Longitudinal Unobtrusive Measurements in Rehabilitation, Arch. PhvVs. Med. Rehab. 57:189, 1976. 31. Hansel, L., Food and Drug Administration, personal communication, February 1984. 32. Home, D, A., and Gold, R. S., Guidelines for Developing Health Education Software, HeaJth Education 14(6):85-6, 1983.
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180 Technology and Aging in America 33. Hubbard, Linda, Keys to a Better Life, Modern Maturity, June-July 1983. 34. Jorgens, J., Food and Drug Adminis tration, personal communication, February 1984. 35. Kane, R., The Rand Corp., personal communication, August 1983. 36. Kane, R., and Kane, R,, Assessing the Elderly (Lexington, MA: Lexington Books, 1981). 37. Katz, A., and Bender, A., The Streqgth in Us: SelfHelp Groups in the Modern World (New York: New Viewpoints, Franklin Watts, 1976). 38. Kearsley, G., and Furlong, M., Computers for Kds Over Sixty (Reading, MA: Addison-Wesley, 1984). 39. Komoski, K., Education Products Information Exchange Institute, quoted in American Family, vol. VI, No. 9, October 1983. 40. Levin, L., Yale University, Yale School of Medicine, Department of Epidemiology and Public Health, personal communication, October 1983. 41. Levin, L., Self-Care and Health Planning) Social Policy 8(3):47-54, November/December 1977. 42. Mangen, D., and Peterson, D., Compendium of Health Assessments of the Elderly, 1981. 43. Maxman, G., The Post-Physician Era (New York: 44 John Wiley & Sons, 1976). McGinnis, J. M., Preface-Computer Utilization in Health Education: A Challenge for Health Educators, Microcomputers and Health Education, Special Issue of Health Education 14(6):5, October 1983. 45. National Homecaring Council, Facts About Homemaker-Home Health Aide Service, New York City, 1984. 46. Rados, B., Home Is Where the Medical Device Is, FDA Consumer, March 1981, pp. 5-7, 47. Raines, J. R,, and Ellis, L. B. M., ( A Conversational 48, 49 0 50. 51. 52. 53. Microcomputer-Based Health Risk Appraisal, Computer Programs in Biomedicine 14, 1982, pp. 175-184. Ramm, D., and Gianturco, D. T., Computers and Technology: Aiding Tomorrows Aged, The Gerontofoglst, Part 1, autumn 1973, pp. 323-326. Reed College, A)umm Bulletin 62(4), December 1983. Schwartz, S., University of California Medical School, San Francisco, Department of Psychiatry and Contributing Editor to P.C. World, personal communication, January 1984. Sdao, M., Johns Hopkins University, School of Public Health, personal communication, November 1983. Seisler, J., A Classical Colonial With an Eye Toward the Future, Washington Home Magazine) Washington Post, Nov. 3, pp. 16-21. Slack, F. J., Hichs, G. P., Reed, C. G., et al., A Computer-Based Medical History, New EngZ. J. Med. 274:194, 1966. 54. Smolen, D., Stein, G. H., Goldstein, M. K., and Rosenshein, J. S., NEW: An Interactive Data Management System for Monitoring Ambulatory Patients) Computer Programs in Biomedicine 28:71-76, 1978. 55. Texas Instruments, Inc., Weight Control and Nutrition, software program, Lubbock, TX. 56. Toffler, A,, The Third Wave (New York: Morrow, 1980). 57. Trippy, R., University of Connecticut School of Medicine, personal communication, March 1984. 58. U.S. Congress, Congressional Budget Office, Changing the Structure of Medical Benefits: Issues and Options, March 1983. 59. U.S. Congress, General Accounting Office, Software Used in Medical Devices Needs Better Controls To Avoid Compromising Patient Safety, AFMD-81-95, Aug. 5, 1981. 60. U.S. Congress, Office of Technology Assessment, Health Technol~ Case Study: Effectiveness and Costs of Continuous Ambulatory Peritoneal ilialysis, first draft, in press. 61. U.S. Congress, Office of Technology Assessment, Medical Technol~ and Costs of the Medicare Program, OTA-H-227 (Washington, DC: U.S. Government Printing Office, July 1984). 62. U.S. Congress, Office of Technology Assessment, Information Technology and Its Impact on American Education, OTA-CIT-187 (Washington, DC: U.S. Government Printing Office, November 1982). 63. U.S. Congress, Office of Technology Assessment, Technolo~ and Handicapped People, OTA-H-179 (Washington, DC: U.S. Government Printing Office, May 1982). 64. U.S. Congress, Office of Technology Assessment, Computer Technology in Medical Education and Assessment: A Background Paper, OTA-BP-H-1 (Washington, DC: U.S. Government Printing Office, September 1979). 65. U.S. Congress, Office of Technology Assessment, Policy Implications of Medical Information Systems, OTA-H-56 (Washington, DC: U.S. Government Printing Office, November 1977). 66. U.S. Department of Health, Education, and Welfare, Healthy People (Washington, DC: U.S. Government Printing Office, 1979). 67. U.S. Department of Health and Human Services, NIH Guide for Grants and Contracts, Announcement) Oct. 5, 1983. 68. U.S. Department of Health and Human Services, NIH Guide for Grants and Contracts, Health Behaviors and Aging: Behavior Geriatrics Research, July 1983. 69. U.S. Department of Health and Human Services,
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Ch. 6information Technology and the Health of an Aging Population l 181 Office of Disease Prevention and Health Promotion, Healthfinder-Health Promotion Software, prepared by the National Health Information Clear75. inghouse, September 1983. 70. U.S. Department of Health and Human Services, 76. National Center for Health Statistics, 1976-77, Elderly People, Population 65 Years and Over, 1983. 71. U.S. Department of Health and Human Services, 77. Report of the Graduate Medical National Advisory Committee, September 1980. 78. 72. U.S. Department of Health and Human Services, Public Health Service, National Institutes of Health, National Institute on Aging, A Guide to Medical SelfCare and Self-Help Groups for the Elderly, NIH 79, publication No. 80-1687, revised August 1980. 73. Vanderheiden, G., Computers Can Play a Dual Role for Disabled Individuals, Byte, September 1982, pp. 136-142. 74. Wagner, E., et al., An Assessment of Health Hazardh-lealth Risk Appraisal, AJPH 72:347-52, April 1982. Washington Post (advertisement for Giant Pharmacies), Dec. 14, 1983 Weisenbaum, J., Experts Say Role of Health Professionals To Change Dramatically With Use of Home Computers, American Fami[v 6(8):1-4, September 1983. Weisman, S., Computer Games for the Frail Elderly, The Gerontolo@st 23:361-363, August 1983. Wetstone, S. L., Sheenan, T. J., Votaw, R., et al., Evaluation of a Computer-Based Education Lesson for Patients With Rheumatoid Arthritis, unpublished, 1983. Young, D. A., List and Description of Government Payers, paper submitted to the Committee on Evaluating Medical Technologies in Clinical Use, Institute of Medicine, Natural Academy of Sciences, unpublished, 1984.
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Chapter 7 Technologies, Functional Impairmentand Long-Term Care
PAGE 185
Contents Page Introduction . . . . . . . 185 What is Long-Term Care . . . . 185 The Need for Long-Term Care . . . 185 Government Involvement in Long-Term Care . . . . . 186 Technology and Long-Term Care. . . 187 The Influence of Federal Funding Mechanisms on the Long-Term Care System. . . 188 Functional Impairment andthe Need for Long-Term Care . . . . . 189 Functional Impairment in the Elderly Population . . . 4 . . . 190 Causes of Functional Impairment . . 191 Long-Term Care Services . . . . 194 Informal Long-Term Care . .....+... 194 Formal Long-Term Care Services and Settings . . .....+... . 195 Issues in Long-Term Care Settings and Services. . . . . . 204 Technologies in Long-Term Care . . . 207 Assessment Technologies . . . . 207 Assistive Devices and Rehabilitation Techniques . .......................212 Technologies for Caregivers . . . 220 Long~Term Care Delivery Systems . . 225 Findings . . . . . . . . 232 Research Priorities. . . . . . 234 Issues and Options. . . . . . 235 Use of Assessment Measures . . . 235 Functional Impairment. . + . . . 235 Rehabilitation Technologies . . . 236 Service Delivery Systems . . . . 237 Technical Memorandum: Federal Programs Funding Long-Term Care Services . 237 Medicare . . . . . . . 237 Medicaid . . . . + . . 238 TitleXX . . . . . . . 239 Title III. . . . . . . . 239 Supplemental Security Income . . . 239 Veterans Administration . . . . 240 Chapter preferences . . . . . 240 Table s Table No. Page 12. Public Expenditures on Long-Term Care Service by Program, Fiscal Year 1980. . 187 13. Number of Individuals and Rate per 1,000 Who N&d the Help of Another Person in One or More Selected Activities by Age: United States, 1979 . . . 192 14.Most Frequent Preexisting Health Conditions and Functional Dependencies. . . 193 15. Elements of Long-Term Care in the Home . . . . . . 201 16. Examples of Assistive Devices for the Functionally Impaired Elderly . . 213 17. Behavior Problems of Patients Cited by Families . . . . . 223 Figures Figure No. Page 19. Dependency in Basic Physical Activities Be cause of a C hronicHeakhProblem, by Type of Activity and Age: United States, 1979 . . . . . 191 20.Dependency in Home Management Activities Because of a Chronic Health Problem, by Type of Activity and Age: United States, 1979 . . . . . 192 21. Source of Support for the Disabled Elderly, Cleveland, OH, 1975 . . . 194 22. Percentage Distribution of Nursing Home Expenditures in the United States, 1979... 197 23. Percent of Nursing Home Residents Who Need Assistance With Basic Physical Activities, 1977 . 197
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Chapter 7 Technologies, Functional Impairment, and Long-Term Care Introduction Long-term care for the elderly includes a variety of health and social services provided for individuals who need assistance because of physical or mental disability. The increasing number of elderly persons in our society, particularly those over 85 who most frequently need longterm care, is expected to intensify the demand for services and place additional strain on agencies, delivery systems, and funding programs. This chapter examines Federal concerns in longterm care, the needs of the disabled elderly, and technologies appropriate for addressing those needs and improving services and service delivery. These technologies include: assessment technologies to identify functional impairments and facilitate matching of the individual with long-term care services; technologies to maintain or increase independent functioning, including assistive devices and rehabilitation services; technologies to assist formal and informal caregivers; and service delivery systems to improve access to appropriate long-term care. Discussion focuses on problems that impede the use of available technologies and opment of new technologies. What is long-term care? limit the develAlthough there is no single accepted definition of long-term care, it is generally agreed that the goal of long-term care is to maintain or improve the ability of the individual to function as independently as possible and that services will be needed over a prolonged period, even if they are only needed intermittently. Medical care is seen as an essential component of long-term care, but a variety of other services are also considered important (44). Long-term care is generally concerned with functional impairments, such as limitations in the individuals ability to move around independently; to feed, dress, or bathe himself; or to perform housekeeping functions such as shopping, cooking, or cleaning. While acute care is most often directed toward treating or curing disease, longterm care is generally directed toward compensating for functional impairment and maintaining or improving the functional capacity of the individual. In the past, definitions of long-term care have often encompassed only services provided in institutional settings such as nursing homes and extended-care facilities, but most recent definitions include a broader range of services that may be provided in an institution or in the home or the community (68,109). The following definition, developed for the 1981 White House Conference on Aging, emphasizes the broad range of services and the kinds of individuals served: 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 capacity for self-care. Services may be continuous or intermittent, but it is generally presumed that they will be delivered for the long-term, that is, indefinitely, to individuals who have demonstrated need usually measured by some index of functional incapacity (130). Although long-term care services are needed by some disabled individuals of all ages, this chapter addresses only the long-term care needs of the elderly. The need for long-term care Estimates of the number of elderly individuals who need long-term care services depend on the definition of long-term care that is used and the 185
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. 186 l Technology and Aging in America kinds of impairments that are seen to create a need for long-term care. About 7 percent of individuals 65 to 74 and more than 40 percent of those over 8.5 have functional impairments that may indicate a need for long-term care. Many o f these individuals are not using formal long-term care services: some receive assistance informally from family or friends; others live in communities that lack the formal services they need. Some elderly individuals cannot pay for services and are not eligible for those provided by government programs. others are not aware of available services or simply prefer not to use formal long-term care services. At present there are almost 1.3 million elderly individuals in nursing homes at any one time. Another 150,000 to 200,000 elderly individuals are residents of board and care facilities (88), and many elderly persons are receiving one or more long-term care services in their homes or communities.1 Adult day care facilities, hospice programs, and congregate housing facilities also provide long-term care services in some communities. The need for formal long-term care services is expected to increase dramatically in the future as a result of rapid growth in the number of elderly individuals in the population (see ch. 2). One researcher has estimated that the number of elderly individuals in nursing homes will rise by more than 50 percent by the year 2000 (29), requiring construction of up to 10,000 new nursing homes. Demand for other long-term care facilities and services can be expected to increase proportionately, Factors that would alter these projections are changes in the prevalence of chronic disease and functional impairment among the elderly and in the ability and willingness of family and friends to provide long-term care services informally. over the past 50 years, advances in public sanitation, hygiene, and medical care have lowered mortality from infectious diseases, and individuals who might have died earlier of these causes now live long enough to develop functional impair1 in 1980, about 890,000 elderly individuals received home health care services funded by ,Medicare, and about 140,000 elderly individuals received ,Medicaid funded home care services (126). There are no reliable estimates of the number of elderly individuals who paid privately for home care services. ments related to chronic diseases. Medical treatment has also lowered mortality from heart attacks, strokes, and some cancers, but there is currently no evidence that the onset of chronic disease and functional impairment has been postponed (98). Future medical advances that reduce mortalit y for the elderly may result in greater numbers of elderly individuals with chronic diseases that lead to functional impairment (81), thus increasing the need for long-term care. Yet medical research focused specifically on the chronic conditions that cause functional impairment could result in methods of treatment or prevention that would significantly decrease the number of elderly individuals needing long-term care (29,81). Changes in regulations for government programs that fund acute care services can also affect demand for long-term care. For example, recent changes in Medicare reimbursement for hospital care are increasing the demand for longterm care services. The prospective reimbursement system based on diagnosis-related groups (DRGs) instituted October 1, 1983, has created incentives for early discharge of hospital patients. Many elderly individuals who are discharged earlier from hospitals need continuing convalescent care in nursing homes or in the community. Technologies that have been available primarily in hospitals are also needed in alternative settings in the community to care for these individuals. Government involvement in long-term care Current government involvement in long-term care includes funding and regulation of many long-term care services through Federal programs such as Medicare, Medicaid, Supplemental Security Income (SS1), the Title XX Block Grant, Title III of the older Americans Act, and services provided through the Veterans Administration (VA). (These programs are described in the technical memorandum at the conclusion of this chapter.) State and local governments participate in funding and regulation of services provided through these Federal programs and also fund and regulate some long-term care services of their own. Public spending for Federal programs providing long-term care services in fiscal year 1980 is summarized in table 12.
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. Ch. 7Technologies, Functional Impairment, and Long-Term Care l 187 Table 12.Public Expenditures on LongTerm Care Service by Program, Fiscal Year 1980 a Total reported Percentage distribution by program b expenditures in U.S. Title Ill Supplemental (thousands of Older Americans Security Veterans Service category dollars) Medicaid Medicare Act Income Title XX Administration c Tota l $13,454,224.2 d 76,3% 6.9% 5.2% 2,7% 5.4% 3.5% Nursing hom e 8,586,008.0 92.3 3.6 4.1 Board and care ., 505,991.4 73.1 4. 0 22.9 Adult day care 20,585.9 3.3 96.7 Home healt h 775,383.3 18,2 80.8 h 1,0 Personal care and housekeeper chor e 667,602.4 32.6 6.3 61 .1 Communit y 462,147,2 45.2 54.8 k Less than 0.05 percent. aThese programs se~e individuals of ail ages, not OnlY the elderly bEach of these ~rograms is described in the technical memorandum at the conclusion of the chapter. cExpenditures for fiSCal year 1979 dThis column does not total because some se~ices that are not discussed in this chapter and services for retarded adults are nOt included, expenditures for calendar year 1979 fNursing home ombudsman sewices$3,789,0 thousand. presidential care and treatment services. hExpenditures for calendar year 19m ilncludes sewices repofled under the follo~lng categories: homemaker, chore, and home rnanagefllent, Jlncludes access, community (other than legal), and in-facility services. klncludes sewices repo~ed under the following categories: special se~ices for the blind, education and training, transportation, health related, Spt?Cid SefViCeS fOr the disabled, other, socialization, transitional case management, protective services for adults, placement, housing, improvement, counseling, recreational, diagnosis and evaluation, and emergency SOURCE: Cohen, 1983 (25). Rising public expenditures for long-term care services are a major concern of government at all levels. Public spending for long-term care has increased sharply over the past 20 years and is expected to continue growing as a result of increases in the number of elderly persons, expansion of services, and escalating health care costs. For example, more than one-third of all Medicaid expenditures are now for nursing home care. Despite Federal and State efforts to contain costs, expenditures for nursing home care continue to grow (119), threatening the capacity of the Medicaid program to provide other benefits for indigent elderly and nonelderly recipients. In addition to rising costs, another major governmental concern in long-term care is the availability of appropriate services for the disabled elderly. Although there is currently no comprehensive Federal policy on long-term care, the programs cited earlier reflect government intent to provide for some of the long-term care needs of the elderly. Relevant public policy issues include: l availability of long-term care services in local communities; access to these services, including information and referral, and funding; l l l appropriate matching of the needs of the individual and the services provided; provision of services in the least restrictive setting; and quality of available services. Government concern for controlling public expenditures in long-term care appears to conflict with government efforts to assure access to appropriate long-term care services (81). Increased use of technology can address both concerns. Biomedical research on chronic disease and rehabilitation technologies that help to maintain or improve independent functioning may decrease the need for long-term care, thus limiting costs and improving quality of life for the elderly. Assessment technology and technologies to assist caregivers and improve the service delivery system can lead to more appropriate treatment and more efficient use of available resources. Technology and long-term care Technology has traditionally been given very little emphasis in long-term care. The importance of functional impairments in causing the need for long-term care has been cited repeatedly in re38-800 0 85 7
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188 l Technology and Aging in America search reports and government publications, but the role of technology in compensating for functional impairments has received relatively little attention, Assessment technologies to identify functional impairments have not been widely used outside research and demonstration projects and specialized geriatric assessment centers. Long-term care providers, including nursing homes and informal caregivers such as family and friends, have not generally used available technologies to facilitate caregiving and improve quality of care. The influence of on the long-term Some specific reasons for the lack of emphasis on these technologies are discussed later in this chapter. One common factor that limits the use of these technologies is the overriding emphasis on medical care and skilled nursing care in the Federal programs that fund long-term care services. By defining need in terms of medical and skilled nursing care, these programs tend to obscure other needs, including the need for technologies to identify and compensate for functional impairments and assist caregivers and the need for alternative forms of care. Federal funding mechanisms care system At present Medicare and Medicaid pay almost half the total cost of nursing home care in this country, and more than half of all nursing home patients are paid for in part by these public programs. z It is estimated that Medicare and Medicaid also pay for more than half of all home care in this country (94). As a result, Medicare and Medicaid regulations that define eligibility for services affect a very large proportion of those receiving long-term care. In addition to defining eligibility requirements, Medicare and Medicaid regulations define the kinds of services covered, the kinds of agencies certified to provide reimbursed services, and minimum standards for the number and qualifications of personnel employed by these agencies. State governments can add to Federal requirements, and some agencies provide services and staffing above Medicare and Medicaid guidelines, but because cost containment is a constant concern, many agencies limit their services and staffing to Medicare and Medicaid requirements. Even individuals who pay privately for long-term care services may be affected by Medicare and Medicaid regulations because the agencies that proUsing 1976 data, the General Accounting Office estimated that 54 percent of elderly nursing home residents were receiving some Medicaid support (119); other data indicate that the figure may be as high as 75 percent (134). vide services to them are often structured and staffed to meet these requirements. 3 Medicare and Medicaid were enacted in 1965 primarily to provide medical care for the elderly and the poor, with emphasis on acute care in the hospital and the physicians office. Medicare coverage for nursing home care was designed to provide skilled nursing care immediately following hospitalization. Medicaid coverage for long-term care was intended to assure adequate health care services for low-income persons but not to provide supportive or custodial care. Since their inception, both programs have been stretched to provide some services that are not medically related, but the emphasis remains on medical care. Eligibility for Medicare-funded nursing home care depends primarily on medical diagnosis and the need for skilled nursing care, and Medicare-funded home care services are healthrelated services authorized by a physician. Eligibility for most nursing home and home care services funded by Medicaid depends on medical condition. 3 Alhough some facilities, agencies, and providers do not provide services for any Medicare or Medicaid reimbursed patients and so are not affected by Medicare and Medicaid regulations, most facilities serve both Medicare or Medicaid patients and individuals who pay privately for their care. In these agencies, the services and staff available to private-pay patients are often determined indirectly by Medicare and Medicaid regulations.
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Ch. 7Technologies, Functional impairment, and Long-Term Care l 189 Because Medicare and Medicaid fund such a large proportion of long-term care services, the emphasis on medical diagnosis and medical treatment in these programs tends to define the kinds of long-term care needs that are recognized and the services and technologies that are available. 4 Physician services and prescribed medical treatment are obviously very important for impaired elderly individuals, and accurate medical diagnosis is essential for planning medical and nonmedical care, but evaluation of appropriate technologies for this population requires recognition of needs for both medical and nonmedical forms of care. The following examples illustrate how the emphasis on medical and skilled nursing care in Federal funding programs can lead to inappropriate treatment and distort data on the need for long-term care. 4 Ntany long-term care agencies have been created since Medicare and Medicaid came into effect and have designed their programs to serve Medicare and Medicaid patients and conform to relevant Federal regulations. %urveys based on a review of patient records cannot pick up these instances of inappropriate treatment because patient records must be written to show that the patient needed services that are reimbursable under Medicare and Medicaid, or payment will be denied. Only an independent assessment of patient needs could provide accurate data. Functional impairment and the need for long-term care Despite the emphasis on medical diagnosis and on their own. The important factor in determinmedical care in the existing long-term care sysing the need for long-term care, including both tern, virtually all research on the long-term care formal and informal services, is the functional needs of the elderly shows that medical diagnostatus of the individual; i.e., which functions he sis is usually not a good predictor of the need for or she is able to perform and which functions he services. Individuals with the same diagnosis vary or she needs help with (50,68,140). greatly in their need for long-term care. For example, some individuals with heart disease, chronic In fact, the elderly often measure their own respiratory disease, or degenerative osteoarthritis health in terms of functional impairment. They need to be in a nursing home; others manage well may say that they are in good health when they
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Technology and Aging in America Photo credit: Phylis Eisen Many elderly individuals function independently despite underlying chronic conditions. are able to function independently in spite of underlying chronic diseases (68). Likewise, they may fear the frailty and dependency associated with functional impairment more than specific diseases (.53). While chronic diseases often cause functional impairment, it is functional impairment that most often leads to a need for long-term care. The distinction between chronic disease and functional impairment is very important in identifying long-term care needs and technologies that are appropriate for addressing these needs. Technologies that do not affect underlying disease conditions but improve the functional status of the individual can decrease the need for long-term care. For example, devices or techniques that allow an individual to bathe, dress, and feed himself will decrease his need for long-term care services. In contrast, medical treatments that alter disease conditions but do not improve functional status will not affect the need for long-term care. Thus, an individual with heart disease, hypertension, and degenerative osteoarthritis may need assistance in functioning only because of the osteoarthritis; medical treatment to control the hypertension will not affect his current need for long-term care services. Precise medical diagnosis is essential for the treatment of disease, and diagnoses are available for many elderly patients, yet they often do not specify the disease conditions that are causing functional impairment. Diagnosis related to functional impairments is important for planning treatment because while long-term care patients often have several diagnoses, including som e presently incurable diseases, the condition that is causing the need for long-term care may be curable. For example, incontinence, which has been cited as the cause of nursing home placement for many patients, may often be treatable, allowing the possibility that the patient could return home even when his other chronic disease conditions are unchanged. 6 Functional impairment in the elderly population The extent of functional impairment among the noninstitutionalized elderly is illustrated in the following graphs which show the rates of dependency in six basic physical activities (fig. 19), and in home management activities (fig. 20). These illustrations highlight the relationship between increasing age and functional impairment. Rates of dependency for each activity at least double between each age category and triple between ages 75 to 84 and over 85. The very old, those over 85, are from 5 to 10 times more likely to need assistance with these activities than the youngold, those who are 65 to 74. Among the noninstitutionalized elderly, more than 425,000 individuals are bedridden, including about 1 percent of those 65 to 74 and more than 5 percent of those over 85. About 800,000 individuals over 65 either have a device to control bowel or bladder function or have other trouble with bowel or bladder control; this figure includes about 2 percent of those 65 to 74 and about 11 percent of those over 85 (129). Overall estimates of the number of noninstitutionalized individuals who need assistance from another person in some daily activity are shown in table 13, which again illustrates the dramatic increase in need for assistance with increasing age. Almost 44 percent of those over 85 need or are receiving assistance with some daily activities. As the number of individuals in this age group 6 Medical diagnosis related to functional impairment could also provide valuable information for government planning and policymaking since the need for most long-term care services is dependent on the prevalence of disease conditions that cause functional impairment. Although the annual Health Information Survey conducted by the National Center for Health Statistics provides data on the prevalence of acute and chronic conditions and the prevalence of disability and impairment, there is currently no way to identify which acute and chronic conditions are causing disability and impairment because medical diagnoses related to specific impairments and disabilities are generally not available.
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Ch. 7Techno/ogies, Functional Impairment, and Long-Term Care l 191 Figure 19.Dependency in Basic Physical Activities Because of a Chronic Health Problem, Walking Bathing Dressing Toileting Getting in bed or out of a bed or chair Eating Age 18-44 45-64 65-74 75-84 85+ 18-44 45-64 65-74 75-84 85+ 18-44 45454 65-74 75-84 85+ 18-44 45-64 65-74 75-84 85+ 18-44 45-64 65-74 75-84 85+ by Type of Activity and Age: United States, 1979 Number per 1,000 persons 259.7 m 172.9 ~ 116.6 104.9 I.3 72.5 75-84 ~ 37.6 SOURCE U.S. Department of Health and Human Services, Public Health Service, National Center for Health Statistics, Americans Needing Help To Function at Home, No. 99, Sept. 14, 19S3. grows, the need for formal and informal longterm care services will increase rapidly. Causes of functional impairment Many acute and chronic diseases and mental and emotional disorders can limit the ability of the older individual to function independently. (The prevalence of chronic disease in the elderly is discussed in app. A.) Chronic diseases with especially high prevalence among the elderly include heart disease, hypertension, arteriosclerosis, osteoarthritis, diabetes, and diseases of the urinary system. In some individuals these diseases result in inability to perform basic self-care and home management activities. Vision and hearing impairments are also very common among the elderly and frequently cause functional impairment. 7 The functionally impaired elderly include both those who become disabled after age 65 and those who were disabled at earlier ages but are now over 65. This latter group can be expected to increase significantly as a result of biomedical advances that prolong the lives of developmentally disabled and physically handicapped individuals.
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192 l Technology and Aging in America Figure 20.Dependency in Home Management Activities Because of a Chronic Health Problem, by Type of Activity and Age: Needs help with any home management activity Needs help with shopping Needs help with chores Needs help with handling money Needs help with meals United States, 1979 Number per 1,000 persons 18-44 45-64 65-74 75-84 85+ 399.0 18-44 ~ 3.9 18-4413 6 18-44 45-64 65-74 75-84 85+ 175.5 18-44 45-64 65-74 75-84 85+ !2. 8 224.7 SOURCE: U.S. Department of Health and Human Services, Publlc Health Service, National Center for Health Statistics, Americans Needing Help To Function at Home, No. 92, Sept. 14, 19S3. Table 13.Number of Individuals and Rate per 1,000 Acute conditions that can cause functional imWho Need the Help of Another Person in One or More Seiected Activities by Age: United States, 1979 pairment among the elderly include those resulting from untreated infections and drug interacNeeds help of another person tions. The complex relationship between the need Age Number in thousands Rate per 1,000 for acute medical care and long-term care among 45-64 . . . 1,357 31.2 the elderly is not discussed in this chapter, but 65-74 . . . 1,043 69.2 75-84 . . . 1,101 160.3 it should be noted that the need for long-term care 85+ . . . 674 436.5 for an elderly individual is often first recognized SOURCE: U.S Department of Healh and Human Services, public Health service. when the individual is hospitalized for an acute National Center for Health Statistic% Americans Needing Help To Function at Home, Advancedata, No. 92, Sept. 14, 1983. medical condition. Once this condition has been
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Ch. 7Technologies, Functional Impairment, and Long-Term Care l 193 treated, it becomes obvious that the individual is not able to function independently and may have needed long-term care services even before the acute condition developed. Mental and emotional conditions that cause functional disability include organic conditions such as Alzheimer disease and multi-infarct demeritia, and functional disorders such as depression. It is estimated that 5 to 15 percent of individuals over 6.5 have Alzheimer disease (123), and 2 to 7 percent have clinically diagnosed cle pression (36). Estimates of the extent of undiagnosed depression in the elderly are much higher. The relationship between mental and emotional conditions and functional impairment in elderly individuals has received little research attention, but a recent study by Brody and Kleban (15) compared functional impairment in three groups of elderlv individuals: those with normal mental functioning, those with a history of diagnosed functional mental illness for which inpatient or outpatient treatment had been received, and those with senile dementia. The chronic diseases and functional disabilities of these groups are presented in table 14. The researchers point out that although almost all the subjects had one or more chronic conditions, the mentally normal group was basically independent in self-care and home management activities; the group with functional mental dis orders was somewhat more dependent, with a significant proportion needing help with home management activities; and the individuals with senile dementia were most dependent, with a large proportion needing help with personal care and almost all needing assistance with home management activities. Dementia was highly correlated with functional impairment. Other studies also indicate a correlation between dementia and functional impairment. For example, special tabulations of survey data on nursing home and community dwelling older persons indicate statistically significant correlations between impaired cognitive ability and incontinence of bowel or bladder (Pearson correlations ranged from 0.63 to 0.73) (86). These data agree with findings of Ouslander, et al. (75), that the majority of incontinent patients in seven nursing homes studied were also cognitively impaired. Patients with frequent incontinence were significantly more likely to be cognitively impaired than those with occasional incontinence. The relationship between mental confusion and functional impairment is a very important consideration in the development of technology for long-term care because technologies that are appropriate for individuals who are not confused are often inappropriate for those who are confused. Organic brain disease is known to cause a progressive decline in the individuals mental functioning and self-care abilities: patients become Table 14.Most Frequent Preexisting Health Conditions and Functional Dependencies (percentage by groups) Senile Senile Preexisting health conditions Normal Functional dementia Dependent in Normal Functional dementia Arthritis . . . . . 66 63 56 Toileting . . 0 0 35 Foot trouble. . . . . 45 35 35 Feeding. . . 0 0 26 Visual impairment. . . . 33 56 56 Dressing . . 2 5 50 High blood pressure . . 33 41 53 Grooming . . 0 7 47 Circulation problems . . 31 26 62 Home mobility . 0 2 29 Hearing impairment . . 27 43 26 Bathing . . 2 16 79 Diabetes . . . . . 25 9 24 Cutting toenails. 16 44 91 Elimination problems . . 22 52 59 Telephoning ... 0 2 62 Digestive problems. . . 14 33 38 Shopping (food) 16 35 97 Nervous breakdown . . 0 40 0 Food preparation. 2 9 79 Housekeeping . 10 23 88 Laundry . . 8 26 Transportation . 8 30 94 Taking medications 2 5 82 Handling finances 4 14 97 NOTE: Data for normal and functional groups obtained from subjects data about dependencies of senile dementia group obtained from collaterals. SOURCE: Brody and Kleban, 1963 (16),
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194 Technology and Aging in America increasingly forgetful and confused and eventually may become unable to dress, bathe, and feed themselves because they cannot remember how; they become incontinent because they cannot find the bathroom or remember how and when to use a bathroom. About 50 percent of nursing home residents have symptoms of confusion, but it is not known how many or what proportion of these individuals are unable to care for themselves as a result of confusion and how many are functionally impaired as a result of other chronic physical conditions. Some individuals may be functionally impaired as a result of both mental confusion and physical conditions. Identifying the cause of functional impairment is crucial for the appropriate use of rehabilitation technologies with these patients. Long-Term care services The existing long-term care system includes services provided informally by family and friends and formal services provided in institutions, in the community, and in the patients home. The following description of the kinds of individuals who are receiving services and the characteristics of the agencies and caregivers provides a background for the identification and evaluation of technologies appropriate for these patients, agencies, and caregivers. Informal long-term care Families play a predominant role in providing long-term care services for the elderly. A 1975 study by the General Accounting Office (GAO) of the elderly population in Cleveland, OH, concluded that families were providing more than 50 percent of all long-term care services received, and that as the impairment level of the individual increased, so did the proportion of services provided by the family. For the extremely impaired group, families provided 80 percent of needed services (115). While the spouse and adult children of the disabled elderly are the most frequent source of informal support, other relatives and friends also provide assistance: of the 87 percent of elderly subjects in the Cleveland study who identified an individual as their primary source of help, most cited adult children or their spouse, but a significant number named a brother or sister, another relative, or a friend (114) (see fig. 21). Informal support provided by family and friends can help to avoid or delay institutionalization, and Figure 21.-Source of Support for the Disabled Elderly, Cleveland, OH, 1975 SOURCE: U.S. Congress, U.S. Comptroller General, General Accounting Office, Apr. 19, 1977 (114). elderly persons who live alone are at greater risk of nursing home placement. The GAO study found that of those persons who were institutionalized during the following year, none had been living with spouse or adult children, and threefourths had been living alone (115). Similarly, a study of severely disabled elderly people receiving services from a home care agency in Philadelphia showed that none of the individuals lived alone: 46 percent lived with their children, 20 percent lived with a spouse, and 34 percent lived with other relatives and friends (18).
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Ch. 7Technologies, functional Impairment, and Long-Term Care l 795 Several recent reports suggest that the increase in numbers of working women may limit the availability of family members to care for the impaired elderly (11)96)113). Although no statistics are available to test this hypothesis, a study of the attitudes of elderly women, their daughters, anci granddaughters found that the daughters, and particularly the granddaughters believe that the elderly should be able to depend on their families to help them. At the same time, the respondents agreed that working daughters should not quit their jobs in order to care for elderly parents (16). These findings are significant because daughters provide the great majority of informal supports to elderly parents. The availability of technologies to lessen the burden of caregiving could increase the ability and willingness of families to keep elderly relatives at home. These technologies include: l l l l l assistive devices that increase the ability of the impaired individual to perform some functions independently; devices and procedures that help with lifting, turning, transferring, bathing, dressing, and feeding functionally dependent persons; devices and procedures to assist with the problems of the mentally confused individual, such as wandering, forgetfulness, being up all night, and the catastrophic emotional reactions that characterize some Alzheimer disease patients; home care systems to provide services the caregiver cannot provide and to teach caregiving procedures; and respite care systems provided in the home or community that temporarily relieve the caregivers of their responsibilities. Technologies to facilitate physical care ma-y be particularly important for the spouse and adult children of the impaired elderly because these individuals are often elderly themselves and may have chronic conditions that limit their energy, strength, and capacity to provide physical care. Several recent reports have also documented the value of support groups in providing information and emotional support for caregivers. These technologies are discussed later in this chapter. Formal long-term care services and settings Formal long-term care services are provided in nursing homes, board and care facilities, and in the elderly persons home. Adult day care, hospice care, respite care, and congregate housing services are also available in some communities. These services are often said to form a continuum of care arranged to reflect the elderly persons increasing need for assistance. At one end of the continuum are inpatient facilities providing 24hour skilled nursing care, and at the other end are community agencies that provide supportive services such as meals-on-wheels, chore services, and transportation for the elderly. In between are board and care facilities that offer personal care on a 24-hour basis and home health agencies that provide skilled nursing care and personal care in the home. The continuum of care concept reflects a combination of two underlying questions about the individuals need for care. The first is whether the individual needs 24-hour care; that is, can the individual safely be alone at all? The second question concerns exactly what kind of care the individual needs: skilled nursing care, personal care, or supportive care. Skilled nursing care includes medically prescribed treatments such as tube feedings, dressings, catheterization, and monitoring of medical conditions that can only be done by a trained nurse. Personal care includes services such as bathing, dressing, feeding, and assisting the patient to get up and get to the bathroom, while supportive services include shopping, housekeeping, chore service, and transportation. In the past, few formal long-term care services were available in the home, and individuals were sometimes admitted to nursing homes for skilled nursing care or personal care even when they did not need 24-hour care. In some communities this is still true, but in other communities skilled nursing care, personal care, and supportive services are available both in institutional settings and in the home. The availability of home care services makes it increasingly important to carefully assess the individuals need for 24-hour care. Provision
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195 l Technology and Aging in America of appropriate long-term care services depends on matching of available resources with the individuals need for 24-hour care and/or skilled nursing care, personal care, or supportive care, Ideally, a wide range of long-term care services would be available in each community, and elderly individuals could select the services they need. In fact, some services are not available in certain jurisdictions, and some are available only to those able to pay privately. Even when services are available in the community, it is often difficult for the elderly and their families to find out about them. Physicians and other health care professionals are frequently unaware of available services (24). Decisions about long-term care are often made in an atmosphere of crisis that is compounded by lack of information about available resources and lack of coordination of long-term care services at the community level. NURSING HOMES At present, there are approximately 20,000 nursing homes in the United States, providing beds for about 1.5 million residents, about 85 percent of whom are elderly. About 5 percent of those over 65 are residing in nursing homes at any one time, This number includes less than 2 percent of those 65 to 74, but more than 20 percent of those over 85 (125). Nursing homes provide 24-hour care, skilled nursing services, and personal care in an institutional setting, Care is given by nurses or by nursing assistants supervised by nurses with written orders from a physician. In addition to skilled nursing care and personal care, nursing homes provide a type of sheltered housing, including room and board, housekeeping, and meal service, and 24-hour supervision. For some patients, this combination of sheltered housing, supportive services, and 24-hour supervision is more important than any specific nursing services available in the facility. Funding for Nursing Home Care.More than half the cost of nursing home care is funded by government programs, primarily Medicaid. As figure 22 illustrates, the remaining 47 percent is paid by patients and their families (45 percent) and by private insurance (less than 2 percent). Residents.Nursing home residents are most often admitted on the basis of medical diagnosis and need for nursing care. According to the National Nursing Home Survey, primary diagnoses on admission include cardiovascular diseases (4o percent), mental disorders such as senile psychosis, chronic brain syndrome, senility, mental retardation, and alcoholism (20 percent), diabetes (6 percent), arthritis and rheumatism (4 percent), hip fracture (2 percent), cancer (2 percent), and other (26 percent). Functional impairments are seldom formally evaluated on admission, but the survey indicates that most nursing home residents need assistance with basic physical activities (see fig. 23). More than 20 percent of nursing home residents required help with all six activities (128). 8 A comparison of nursing home residents and disabled elderly individuals in the community shows that three characteristics strongly predict nursing home placement: 1) dependency in toileting or eating, 2) dependency in bathing and dressing, and 3) mental disorders (1381. Nursing home residents are not a homogeneous group. They include: 1) terminally ill patients who have been discharged from a hospital because no further hospital care is needed; 2) individuals admitted from a hospital for recuperation and rehabilitation following surgery or a fracture; and 3) individuals who are medically stable but functionally impaired, due to chronic physical or mental conditions. About one-third to one-half of nursing home residents are discharged within 3 months (51,65); these tend to be individuals who have been admitted from a hospital with a diagnosis of cancer, stroke, or hip fracture. A 1981 study indicates that about one-half of these shortstay patients died either in the nursing home or in the hospital shortly after discharge from the nursing home; 41 percent returned home, and 13 percent were transferred to another health care facility. In contrast, individuals who stay longer in the nursing home are more often admitted from home and include a higher propora Some evidence suggests that nursing home residents are now more dependent and more functionally impaired than in the past (119), This trend will accelerate as hospitals discharge sicker patients to nursing homes in response to the Medicare prospective payment system. Results of the 1985 National Nursing Home Survey can be expected to document this change.
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Ch. 7Technologies, Functional Impairment, and Long-Term Care l 197 Figure 22.Percentage o 1979 Medicaid 5 < 3 of Nursing Home Expenditures in the United / Insurance and other 1.4 t + Other 38 ~ I States, Medi~~re 2.3 ~ Veterans Administration 1.9 SOURCE: GAO, 1983 (119), Figure 23.Percent of Nursing Home Residents Who Need Assistance With Basic Physical Activities: United States, 1977 Mobility I 66?Z0 Bathing I : .. 86/0 Dressing I .; J. 690/o Toileting 1 Bowel and bladder control 450/0 Eating ~szf o SOURCE: Dtil-fS, 1981 (128),
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198 l Technology and Aging in America Photo credit: Gretchen Kolsrud Many nursing home residents are medically stable, but require long-term care because of functional impairments. tion of those with mental disorders; one-fourth of long-stayers had a primary diagnosis of mental disorder or senility compared with only 3 percent of short-stayers (51). These long-stay patients constitute the largest proportion of nursing home residents at any particular time. Different subgroups of nursing home residents need different types of care and different technologies for appropriate treatment. For example, terminally ill patients might be best cared for with methods based on the hospice model, which emphasizes pain+ontrol technologies and emotional support systems; individuals admitted for rehabilitation need assistive devices, physical and occupational therapies, and effective linkage with community agencies for continued care following discharge. Among the long-stay patients, appropriate technologies depend partly on the mental status of the patient; for mentally competent patients, technologies to maintain or improve physical functioning are appropriate. For those who are mentally impaired, environmental design technologies, cognitive therapies, and technologies to maintain physical health are more appropriate. For the new group of patients who are discharged early from hospitals as a result of the Medicare prospective reimbursement system, appropriate technologies may be monitoring equipment and nursing care systems now used primarily in hospitals. Some nursing homes provide technologies and systems of care appropriate to the different needs of unique subgroups of patients, but many nursing homes provide a relatively uniform system of care for all patients. This is due partly to lack of comprehensive assessment procedures to identify individual needs and partly to insufficient staff to provide individualized systems of care, Professional nurses who are trained to assess patient needs and plan individualized treatment are often in short supply in nursing homes and also perform many other functions in the facility, such as skilled medical treatments, supervision of largely untrained nursing aides, and time+ onsuming recordkeeping required by Federal and State regulations. Recent research that identifies subgroups of nursing home residents (47,51,62)63,64,65)66) provides a strong knowledge base for defining distinct care needs of these subgroups, but this research is based on retrospective analysis, and it is not known how effectively nursing home patients can be identified as belonging to one subgroup or another at the time of admission. In addition, there is no consensus about whether patients with similar needs are best cared for in separate facilities, separate sections of the same facility, or mixed in with other kinds of patients as they usually are now. Further research is needed to clarify these issues. Research on care systems designed for confused patients is particularly needed. Although about 50 percent of all nursing home residents have symptoms of mental impairment and some nursing home residents have longstanding emotional and behavioral problems, such as psychiatric conditions, alcoholism, and drug abuse, most nursing homes are not structured or staffed to meet the needs of these patients (95). Within the existing care system, mentally and emotionally impaired patients require more staff time than physically impaired patients (39)128). Some care providers believe these patients can be more easily and effectively cared for in a setting designed specifically to meet their needs.
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Ch. 7Technologies, Functional Impairment, and Long-Term Care l 199 Research on appropriate patterns of care for nursing home residents is currently funded through two Teaching Nursing Home Programs, one sponsored by the National Institute on Aging (NIA) and the other sponsored by the Robert Wood Johnson Foundation. NIA has awarded grants to five programs, each emphasizing treatment of specific disease conditions or functional impairments (124). The Robert Wood Johnson program is sponsoring affiliations between 11 nursing schools and local nursing homes (23). In addition to these programs, a few long-term care facilities have received public and private funding for the development of model nursing home services (58). objectives of all these programs include investigation of disease processes in the elderly, evaluation of functional assessment measures, and development of treatment approaches. 9 Training opportunities for physicians, nurses, social workers, and other caregivers are provided. As these programs develop, models of care for specific subgroups of patients will be developed and refined. BOARD AND CARE FACILITIES Board and care facilities include a wide range of residences that provide room and board and some degree of protective supervision on a 24hour basis. Unlike nursing homes, these facilities are not considered medical care institutions. Nursing care is generally not provided, but residents may receive assistance with some personal care activities such as bathing or dressing. Supportive services, such as cooking, cleaning, and laundry are also proivided. Although board and care residents may have private rooms, they generally do not have private apartments because of the need for 24-hour supervision. There are now about 30,000 board and care facilities in the United States, serving about 350 ) 0 00 individuals, including elderly, mentally retarded, and mentally ill residents. Although no exact figures are available, it is estimated that about onethird to one-half of board and care residents are elderly. (Some of the elderly are mentally retarded and mentally ill, and some of those who are classified as mentally ill or mentally retarded are over Wwatment goals include rehabilitation and discharge of some patients and lifelong supportive care for others. 65.) Board and care facilities range in size from small adult foster homes and group homes to large residential care facilities and some retirement homes. Each State recognizes and licenses certain types of board and care facilities; although each State has some unlicensed board and care facilities, a recent study shows that 85 percent of all facilities are licensed (88). Funding for Board and Care. -About one-third of residents pay privately for care. Among the other two-thirds, many receive Federal Supplemental Security Income (SS1) payments and use this income to pay for their care, In addition, States are allowed to supplement the Federal minimum SSI benefits, and by 1983, 34 States and the District of Columbia provided supplements for persons living in board and care facilities (52,131). Residents.Although very little information is available about the characteristics of elderly residents of board and care facilities, a recent study of residents of these facilities in seven States indicates that some residents needed assistance with basic self-care activities, such as bathing (26 percent), dressing (11 percent), walking (9 percent), and using the toilet (4 percent). Larger percentages of residents needed assistance with home management activities such as laundry (64 percent), cleaning, (55 percent), managing money (46 percent), shopping (43 percent), and taking medicine (43 percent). Chronic physical conditions of residents included degenerative joint diseases (36 percent), circulatory and heart disorders (25 percent), hearing impairments (22 percent), and respiratory diseases (14 percent). Perhaps more significant is the large percentage of residents with mental impairments. The researchers found that about 40 percent of the residents were mentally ill, disoriented, or exhibited memory impairmerit. *O About 28 percent of the residents had previously resided i n an institution for th e mentally ill, while 21 percent had lived in a nursing home (31). These data reflect a seriously disabled population with extensive physical and mental impairments. While no research is available to verify the IQne-third of residents were assessed as mentally ill. ,~nother one-third of residents were disoriented or exhibited mental impairment. These tmo groups overlapped, and one of the researchers has estimated that 40 percent of all residents were in one or both subgroups (104).
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200 l Technology and Aging in America primary reasons that residents need board and care services, it is likely that the high prevalence of mental illness, disorientation, and memory impairment explains much of the need for care. These confused and mentally ill residents are more likely to require supervision and assistance with laundry, cleaning, managing money, and taking medicine rather than personal care such as bathing, dressing, and walking. (It is interesting to note that the study did not find any residents who were incontinent or needed assistance with eating, the two primary risk factors for nursing home placement.) The cost of board and care facilities varies widely but is generally one-third to one-half the cost of nursing home care. Despite this relatively low cost, several problems limit demand for board and care homes; these include the generally poor reputation of these kinds of facilities 11 and lack of available information about the facilities, the services offered, and the cost of care. In addition, the pervasive emphasis on medical v. nonmedical forms of care in our society and the availability of Medicaid funding for nursing home care but not board and care limit demand for these facilities. The major factor restricting the supply of board and care homes is the low levels of reimbursement for providers (88). Since the cost of care in most board and care facilities is substantially less than nursing home care, it is important to consider whether some nursing home residents could be cared for in board and care facilities. Both settings provide 24hour supervision, and while some nursing home residents need skilled nursing care that is not available in board and care facilities, many actually receive little or no skilled nursing care. For these individuals, many of whom are the long-stay patients discussed earlier, board and care homes might provide a long-term care option that is cheaper and less personally restrictive than living for many years in a nursing home. Technologies appropriate for the board and care population include: llThe American Bar Association has recently finalized a model state statute for board and care facilities that includes standards for physical environment, staff qualifications, resident rights, and administrative sanctions for noncompliance. l l l assessment technologies to identify individuals who can be best served in these kinds of facilities; assistive devices to improve the physical functioning of residents; and technologies for caregivers, including devices and care methods appropriate for mentally impaired residents. In addition, improved information systems are needed to increase awareness of this long-term care option among the elderly, their families, and health care providers. HOME CARE Long-term care services provided in the home include medical, social, and supportive services designed to maintain the individual in the community and compensate for impaired functioning. Most medical and social services that are available in nursing homes can also be provided to individuals at home, but three problems restrict the use of these services: 1) lack of home care services in some communities, 2) lack of coordination of home care services in many communities, and 3) limited public funding for supportive services in the home. In this section, home care services are defined, and appropriate use of home care services is discussed. Because much attention has been focused on whether the availability of home care services can decrease the use of nursing homes, this question is also discussed. Funding for Home Care Services.Public funding for home care services is provided through Medicare, Medicaid, the VA, the Title XX Block Grant, and Title III of the Older Americans Act. Medicare and Medicaid fund primarily health care services, and complex regulations govern the kinds of services that are reimbursed. The Title XX Block Grant and Title III of the Older Americans Act fund primarily supportive services (see the technical memorandum at the conclusion of this chapter). Private insurance pays for some skilled nursing, physical therapy, and speech therapy provided in the home. Individuals and families also pay privately for home care services, but since these services are purchased independently from both agencies and individuals, little information is available about the kinds and cost of services used.
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Ch. 7Technologies, Functional Impairment, and Long-Term Care l 201 Clients.Home care services are listed in table 15. The kinds of elderly individuals who use home care can be inferred from the wide variety of services that are available. Some patients have been recently discharged from the hospital and require nursing care and supervision of medical treatments. In fact, increasingly complex and sophisticated medical treatments, such as intra venous fluid replacement, antibiotic therapy, chemotherapy, enteral and parenteral nutrition, hemodialysis, and continuous ambulatory peritoneal dialysis, can now be provided in the home. Other patients need rehabilitation services such as physical or speech therapy that may have been started in the hospital but can continue in the home. Supportive services such as home delivered meals, homemaker, and chore services may be needed by the same individuals who need skilled nursing care or rehabilitative services and also by another large group of individuals with functional impairments that restrict their ability to shop, cook, or care for their homes. Table 15.Elements of Long=Term Care in the Home Skilled nursing care: Medically oriented care provided by a licensed nurse to include monitoring of acute and unstable chronic medical conditions, evaluation of the patients care needs, injections, care of wounds and bed sores, tube feedings, and clearing of air passages. Skilled nursing care is usually authorized by a physician, Physical therapy: Rehabilitative therapy provided by a qualified physical therapist. Speech therapy: Therapy provided by a qualified speech therapist to improve or restore speech. Occupational therapy: Therapy provided by a qualified occupation therapist to improve functional abilities. Medical social services: Assessment, referral, and counseling services related to the medical care needs of the patient. Home health aide services: Assistance with simple, healthrelated tasks, such as medications and exercises, and personal care services provided under the supervision of a licensed nurse. Personal care: Assistance with basic self-care activities such as bathing, dressing, getting out of bed, eating, and using the bathroom. Homemaker services: Household services such as cooking, cleaning, laundry, shopping, and escort service. Chore services: Household repairs, yard work, and errands. Home-delivered meals: Meals delivered to the home for individuals who are unable to shop and/or cook for themselves. Telephone reassurance: Regular telephone contact to individuals who are isolated and often homebound. Home Care Services as a Substitute for Nursing Home Care. It has been believed for many years that home care services could help to maintain impaired elderly individuals in their homes and avoid nursing home placement. Although this belief offers the hope of cost savings and has been used as an argument for increasing home care services, a recent GAO study of demonstration programs offering expanded home care services found that these services did not reduce utilization of nursing homes. GAO concluded: For some subpopulations of the elderly, providing home care services may decrease the use of nursing homes. However, more work, including the refinement of assessment tools, is needed to better define and identify individuals for whom nursing home use can be reasonably decreased (118). The development and increased use of assessment technologies is discussed later in this chapter. one reason that home care services do not reduce utilization of nursing homes is that many individuals who are at risk for nursing home placement need 24-hour care because they cannot be safely left alone or because they need assistance many times a day at widely separated time intervals. Formal home care services are seldom available on a 24-hour basis because of cost, and in many communities, publicly supported home care services are limited to only a few hours a day. As a result, if the individual lives alone or if no family member is available on a 24-hour basis, institutional care may be necessary. As indicated in the example, formal home care services are not an appropriate long-term care option for elderly individuals who are too confused to remain safely alone and have no one to stay with them when the home care provider leaves. Increased use of comprehensive assessment technologies could help to identify individuals for whom board and care facility or a nursing home is a more appropriate long-term care option than home care. : Frantic calls were received at several nursing homes from a middle-aged seeking nursing home bed for his 73year old mother. She had little income, had broken her hip and was SOURCE: Office of Technology Assessment.
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202 Technology and Aging in America l l l l l assessment technologies to identify patient needs and appropriate care methods; patient-care devices that have been used in hospitals but can be adapted for use in the home, and methods for teaching the elderly and their families to use these devices; assistive devices to decrease functional impairment, and techniques for training individuals to use these devices; environmental design technologies to accommodate the functional impairments of elderly individuals; and improved service delivery systems to increase awareness and appropriate access to home care services. In addition, the information technologies discussed in chapter 6 could be used to meet some of the home care needs of the impaired elderly. For example, interactive television could be used to provide training in the use of devices and to answer questions about medical treatments provided in the home. ADULT DAY CARE Adult day care centers provide health and social services for impaired elderly individuals. Services vary among programs but frequently include supervision, personal care, group activities, meals, recreation, and exercise in addition to medical and medically related services such as physical therapy and speech therapy, Availability of these services in a centralized setting is convenient for both clients and health care providers (106), Two types of adult day care have been identified: 1) rehabilitation-oriented programs designed primarily to provide medical care and physical therapy, and 2) multipurpose programs designed to provide social stimulation for impaired and isolated elderly individuals and respite for the families who have been caring for them (13?). The number of adult day care facilities in the United States has increased from fewer than 20 in 1970 to between 700 and 800 at present (l). Funding for Adult Day Care. -Clients and their families often pay for some or all of the cost of adult day care themselves. Adult day care is an optional Medicaid service; as of 1984, eight States were providing Medicaid reimbursement for adult day care (127). In addition, 35 States provided adult day care with title XX funds, and several States provide adult day care services through demonstration projects funded under the Medicaid waiver program (24). Medicare does not cover adult day care programs, although some medical and physical therapy services provided for adult day care clients are covered by Medicare. Clients.SeveraI studies have examined the characteristics of adult day care clients. A 1976 study of four programs showed that 56 percent Photo credit: Suburban Hospital, Adult Day Care Program, Bethesda, MD Adult day care programs can provide socialization and group activities in addition to medically related services such as physical therapy.
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Ch. 7Technologies, Functional Impairment, and Long-Term Care l 203 of the participants were severely dependent in activities of daily living, requiring assistance in eating, transferring (moving from bed to chair and chair to bed), or toileting, or were incontinent; another 16 percent were moderately impaired, requiring assistance with bathing or dressing, but not eating, transferring, or toileting (106). Another study comparing clients at an adult day care center with residents of a nursing home and individuals living independently in an apartment facility for the elderly found that the day care clients were most disabled in physical health, mental health, and activities of daily living, while the residents of the nursing home were most limited in socioeconomic areas, such as informal social supports and financial resources (85). A third study found that day care clients were generally less impaired than nursing home residents, but of the 25 most impaired day care clients, only 2 were living alone (111). These findings suggest that adult day care can be an appropriate resource for severely impaired individuals as long as they have sufficient informal supports and financial resources to maintain themselves at home when they are not at the day care center. Technologies appropriate for adult day care include assessment technologies to identify elderly individuals who could be cared for in these settings and information systems to increase awareness of this long-term care option among the elderly, their families, and other service providers. Some adult day care programs are designed specifically for mentally impaired individuals, with emphasis on consistency in program and staff to limit daily changes that are confusing to clients and environmental design that allows maximum independence without compromising safety (95). Evaluation of the efficacy and cost of these programs is needed. Treatment methods for mentally impaired individuals that have been developed in adult day care settings may provide a model of care for these patients that can be used in other long-term care settings. HOSPICE Hospice programs provide supportive services for individuals with terminal illness. Hospice is a method of care, not a place, and hospice care can be provided in a hospital, nursing home, or in the patients home. Services include nursing care, medical social services, homemaker, home health aide services, and counseling for the patient and the family. In addition, short-term inpatient care is often available for crises. The technology of pain control is central to the hospice concept, and emphasis is on quality of life rather than aggressive medical treatment and prolongation of life. The first hospice was established in this country in 1973, and by 1983 there were an estimated 1,100 to 1,200 hospice programs in the United States (49). Medicare benefits have been available for hospice care since November 1, 1983. Up to 6 months of hospice care can be covered. Because hospice care is believed to be less expensive than hospitalization, Medicare coverage of hospice care may result in cost savings (121), but some experts question whether these savings will materialize. A recent study compared terminal cancer patients treated in a hospital-based hospice program with those who received conventional care. Hospice patients reported more satisfaction with their care than conventional care patients, but the cost of hospice care was the same or greater than the cost of conventional care. No significant differences were found between the groups in survival time, pain symptoms, or days in the hospital. While the conventional care patients spent more days in nursing homes than hospice patients, the majority of both groups died in the hospital; only 3 percent of the hospice patients and 7 percent of the conventional care patients died at home. Although hospice programs are designed to decrease the number of invasive diagnostic and curative treatments, the data show little difference between the two groups on these variables (49). These results raise questions about the real differences between hospice care and conventional care. Further research is needed, including comparison of methods, costs, and outcomes in hospices based in different settings, such as hospitals, nursing homes, and home care agencies. Hospice care is a resource for terminally ill patients currently being cared for in nursing homes or in the community. Identification of terminal patients can present a difficult diagnostic proce-
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204 l Technology and Aging in America dure for certain subpopulations, and the development of more precise guidelines and diagnostic criteria is needed. Improved service delivery technologies are also needed to make information about the hospice alternative available to appropriate patients and their families. RESPITE CARE Respite care is temporary care provided for the impaired elderly to relieve the primary caregivers. Respite care can be provided in nursing homes, board and care facilities, or in the individuals home, and can range from several hours up to a week or longer. Public funding for formal respite care programs is available in some communities through the Title XX Block Grant and Title 111 of the older Americans Act. There is no Medicaid funding for respite care under the general program, but respite care is part of 15 of the 26 approved Medicaid 2176 waiver programs for the elderly (138). (See the technical memorandum at the end of this chapter for a description of the Medicaid 2176 waiver program.) In addition, home health care, personal care, and homemaker services funded through Medicare, Medicaid, Title XX, and Title III may be used by some families as respite care, since caregivers are able to leave the home when the aide or homemaker is present, CONGREGATE HOUSING Congregate housing for the elderly, which is discussed in chapter 9, is included here because the design features and supportive services available in some congregate housing facilities compensate for the functional impairments of elderly residents and thus postpone or avoid the need for other long-term care services. Physical design features such as emergency call buttons, grabbars in the bathroom, and safety features on ovens have been built into many publicly and privately funded congregate housing facilities for the elderly. Some of these facilities also provide optional supportive services such as meals and housekeeping that can eliminate the need for shopping and some home management activities. Alarm systems in each apartment provide psychological security for physically impaired individuals. Opportunities for socialization and recreational activities in the facility can help to maintain emotional well-being. Most congregate housing facilities in this country have been built within the past 20 years. Over time, administrators at these facilities have had to deal with the increasing physical and mental impairments of their aging residents. In some facilities, residents have been required or encouraged to move out when their functioning decreased below the level established for admission. 1n other facilities, these residents are not required to move, and in some facilities, increased services have been provided to help compensate for impairments and maintain independent functioning. Both physical and mental impairments of residents can limit their ability to function adequately in congregate housing. Physical problems such as severe illness, the need for frequent monitoring of medication, and being bedridden interfere with the individuals ability to live independently, and residents with these problems usually transfer to other long-term care settings. Mental and emotional problems, incontinence, and accident proclivities are also seen as very disruptive by managers and other residents, but individuals with these problems often do not see the need to move (13), which can create difficult administrative problems for managers. In summary, congregate housing is an appropriate long-term care option for some physically impaired individuals. The level and type of impairment that can be safely accommodated depends on the availability of supportive services and physical design features for the handicapped in each facility. Congregate housing is usually not an appropriate option for mentally impaired individuals because of the lack of 24-hour supervision. Federal policy initiatives to increase the availability of congregate housing and encourage provision of services for physically impaired residents are discussed in chapter 9. Issues in long-term care settings and services Several general issues related to long-term care services and settings are discussed in this section, including the comparative cost of care in various settings and the perception of settings as distinct caregiving systems.
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Ch. 7Technologies, Functional Impairment, and Long-Term Care 205 COMPARATIVE COSTS OF CARE Accurate comparison of the cost of various longterm care services is difficult because costs vary from one city to another and from rural to urban areas. Within communities, costs vary depending on the agency providing the service and the source of payment. For example, Medicare usually pays considerably more for specific services than Medicaid. Cost comparisons are further complicated by the inclusion of room and board in the cost of some long-term care services, such as nursing home care, but not in the cost of other services, such as home care and adult day care. Despite these difficulties, some generalizations can be made about relative costs of care. In general, nursing home care costs more than other forms of care because the per diem rate is relatively high and most patients receive care for extended periods. Private patients usually pay the highest rate, followed by VA and Medicare patients, and then Medicaid patients. For calendar year 1979, the average per diem rate was $63.73 for VA patients, $38 for Medicare patients, and $23.59 for Medicaid patients (24). The cost of care in board and care facilities varies widely, but is generally one-third to one-half the cost of nursing home care. In early 1980, the average cost in board and care facilities was about $10 a day (88). In comparison, the average daily cost of hospital care was $226 in 1979 (120), and the average Medicare reimbursement for hospital care was $182 per day (126). The cost of home care depends on the type of services provided and the source of payment. Medicare payments for home care are relatively high. Reimbursement guidelines for the year ending June 30, 1980, were: skilled nursing care, $41.80 (urban) and $38.05 (rural); home health aide visits, $33.00 (urban) and $27.70 (rural) (116). Medicaid payments for home care services are generally much lower. For example, in Colorado in 1980, one home care providet received $45 for a skilled nursing visit under Medicare but only $28 from Medicaid) and $10.24 for a home health aide visit under Medicare but $4 from Medicaid (117). In Washington, DC, in 1980, Medicaid paid $23.75 to $27.63 for skilled nursing visits, $8.61 to $10,50 per hour for personal care, and $2.90 per hour for homemaker services (117). 12 No information is available about the cost of home care services paid for by individuals. These figures indicate that the Medicare rate for a single skilled nursing visit is similar to the Medicare rate for a day of nursing home care. Since the cost of home care does not include room and board and other living expenses, the overall cost of care for an individual who needs daily skilled nursing care at home can be higher than the cost of nursing home care. Most home care patients do not, however, require or receive daily skilled nursing visits; the nurse may go out once or twice a week or less, with intervening visits of a less expensive home health aide. Home care is thus usually less expensive than nursing home care. The Medicare reimbursement for a home health aide visit was about 75 to 85 percent of the Medicare reimbursement for a day of nursing home care, and also does not include the cost of room and board. The Medicaid payment for 1 hour of personal care in the home in Washington, DC, was about one-third to one-half the average per diem Medicaid payment for nursing home care nationwide. The cost of adult day care varies according to the type of program. Those with a rehabilitation emphasis cost about twice as much as programs with a social emphasis, and some adult day care costs the same or more than nursing home care. A 1976 study of four adult day care programs with a rehabilitation emphasis showed that the average per diem cost was $52 a day, but with a wide range of $18.54 to $88.17 (106). Adult day care clients seldom attend every day, however. The same study found that average attendance was 70 days per person per year with a range of 48 to 114 days between the four sites (106). As a result, the overall monthly cost of adult day care is significantly less than nursing home care and may be similar to the cost of a board and care facility. The cost of hospice care and respite care depends on the kinds of services used and the frequency of utilization. At present, Medicare reim1211 is like]}, that the lower Medicaid reimbursement rates discourage pro~iders from ser~ing Medicaid recipients
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206 Technology and Aging in America bursement for hospice care is limited to $53.17 a day for a maximum of 6 months. Congregate housing is considerably less expensive than other long-term care services. In federally subsidized housing, residents who are eligible for section 8 subsidies pay 30 percent of their income for rent. Monthly rent for other elderly individuals can range from $400 per month up to $1,200 to $1,500 or more, depending on the facility and the amenities provided. A recent study focused on costs and outcomes for individuals receiving services in four settingsnursing homes, geriatric day hospitals (adult day care centers), board and care facilities, and senior centers. Applicants were screened and statistical methods were used to develop subgroups of similar individuals receiving services from each type of agency .13 After 9 months, no consistent significant differences were found between subgroups on a wide variety of outcome measures, including utilization of skills for independent living, community integration, unmet service needs, and living conditions. There were, however, significant differences in the cost of care. Considering total expenses for individuals in each subgroup, the adult day care was most expensive (about $48 per day), 14 followed by nursing home (about $40 per day), senior center (about $34 per day), and board and care (about $31 per day). These figures include the costs of acute care services, formal and informal long-term care services, and living expenses in the community. When only the cost of formal long-term care services is calculated, the order is changed: nursing homes are slightly more expensive than adult day care and more than twice as expensive as board and care facilities, while senior center services were least expensive (102). Although these data were derived through a complex analysis of patients and services provided in a limited number of settings in Pennsylvania 13Many app]icant5 t. each agency were not included in this stud y because their needs and/or characteristics were different from those of individuals in the identified subgroups. The authors emphasize that their results are on{v applicable to the kinds of individuals they studied. 14The adu]t dav care services discussed here were rehabilitationoriented servic& provided in a hospital as opposed to socially oriented services that are much less costly. and Delaware, they raise important questions about the differences between services and costs of care in various long-term care settings. SETTINGS AND SERVICES AS DISTINCT CAREGIVING SYSTEMS Long-term care services are most frequently described using a model in which each of a variety of agencies provides unique services appropriate for specific subgroups of patients. Current funding mechanisms and most long-term care decisionmaking systems assume that this description represents reality. In this system, only those technologies appropriate to each subgroup of patients would be used in certain agencies. An alternative model of long-term care includes many agencies, each providing a wide range of services to a broad mix of patients with a variety of needs. The discussion of long-term care settings and services in this chapter indicates that this model more accurately represents current reality. Increased use of technology in this model is more difficult and more expensive because many different kinds of technologies will be needed in each setting. For example, technologies that are appropriate for residents of a single nursing home could include hospice care techniques and pain-control technologies; a wide range of assistive devices and rehabilitation services, including physical, occupational, and speech therapy; technologies for caregivers; patient monitoring devices; and environmental design technologies. The cost of making these technologies available in the nursing home would be very high. The question of whether it is more effective to provide a unique set of services in each setting or a wide range of services to a variety of patients depends not only on the relative costs of increasing the use of technology. It also depends on the feasibility of dividing patients into subgroups and the impact on patient morale and quality of care of moving patients when their needs change. Three questions relevant to these issues can be raised: l Can available assessment measures effectively identify care needs for a large proportion of long-term care patients, including both the services the patient needs and those he does not need?
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Ch. 7Technologies, functional Impairment, and Long-Term Care 207 l How frequently do the needs of individual patients change, resulting in the necessity for different services and technologies? l What is the impact on patients of moving them when their needs change? Anecdotal evidence suggests some negative effects of moving patients, including increased disorientation in a new setting and lowered morale as a result of separation from friends and a familiar setting. Balancing these negative effects against Technologies in long-term Assessment technologies Assessment technologies include both formal assessment measures used to evaluate the individual and knowledge about how and when to use these measures and how to evaluate the results. Effective assessment procedures are important both for good patient care and for sound public policy. Planning appropriate long-term care for a disabled elderly individual requires an understanding of the condition of the individual and the complex interaction of physical, mental, social, and environmental factors that result in functional impairment and create the need for longterm care services. Similarly, sound public policy decisions about the administration and financing of long-term care services require reliable and valid information about functional impairments and the need for services in the elderly population (140). CURRENT USE A large number of assessment measures have been developed over the past 25 years in the United States, and are being used in long-term care research, demonstration projects, and specialized geriatric assessment centers. Most of these measures emphasize the functional status of the individual, and some also assess social and environmental factors that affect the need for long-term care services. Experts in gerontology and long-term care agree that comprehensive functional assessment is essential for the evaluation of elderly individuals for long-term care purthe positive aspects of receiving care in a setting uniquely structured to meet ones needs is an issue that requires further research. The relative ease and lower cost of increasing the use of technology in a long-term care system with each agency providing a unique set of services is only one factor in the decision about which model of long-term care services is most beneficial for patients. care poses and that formal assessment measures are important tools for gathering the necessary information, yet most physicians and other longterm care service providers are not using these tools. The failure of physicians and long-term care providers to use comprehensive assessment measures may be based in part on lack of knowledge about these technologies. Perhaps more important is the fact that Medicare and Medicaid eligibility for most long-term care services is not based on a comprehensive functional assessment of the patient, and no standard assessment is required for individuals who pay privately for long-term care services. Thus physicians and long-term care providers are not required to use comprehensive assessment measures and are often reluctant to spend the additional time needed to complete the assessment. Failure to use comprehensive assessment measures can result in failure to identify treatable conditions. For example, a recent study of incontinence in nursing home patients (75) found that 50 percent of the residents were incontinent, but only 14 percent of these incontinent patients had this problem listed by their physicians, and very few were receiving any treatment for it, While identification of incontinence would result from a thorough medical evaluation, many nursing home residents do not receive thorough evaluations, Use of a comprehensive assessment measure by the physician or another health care professional could increase the probability of identifying these conditions.
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208 l Technology and Aging in America Many research projects and demonstration programs have used comprehensive assessment measures to identify appropriate long-term care services for elderly individuals. For example, one study evaluated the use of comprehensive assessment for frail elderly individuals living at home and awaiting placement in a nursing home; as a result of the assessments, about 60 percent were recommended for and assisted in receiving longterm care outside a nursing home, including 23 percent who received supportive services at home, and 30 percent who were placed in supervised boarding homes (140). Other studies have demonstrated the use of comprehensive assessment measures for identification of inappropriate use of services and unmet needs in the community and for patient planning and treatment evaluation in nursing homes (38,48,140). There is as yet no consensus on the validity of studies showing positive results of the use of comprehensive assessment measures. Some experts believe that the state of the art in assessment technology may not be sufficiently developed to provide positive results (17). One recent study indicates that the use of comprehensive assessment measures is effective in improving patient outcome only in certain groups of patients (91a). ongoing research at specialized geriatric assessment centers around the country can be expected to clarify these questions. ASSESSMENT MEASURES Although an enormous number of variables are related to functional impairments and long-term care needs, it is generally agreed that the most important can be grouped in a few general categories or domains, including: 1) need for medical treatment, 2) physical functioning, 3) mental functioning, and 4) social functioning and environmental fit. In each category, evaluation of the residual strengths of the individual is as important for long-term care decisionmaking as the identification of deficits and problems. In the following sections, variables in each of the categories and problems with measurement are discussed. Measurement of Need for Medical Tmatment. Most assessment instruments designed for impaired elderly individuals include an evaluation of specific medical care needs, such as the need for tracheotomy, respiratory therapy, or intravenous medications. The need for frequent physician services, skilled nursing care, physical therapy, occupational therapy, and speech therapy is also usually evaluated. This information is important because the availability of needed medical care services in the community and in longterm care institutions may affect appropriate placement of the individual. No problems in the assessment of information in this category have been noted (140). Measurement of physical Functioning. -Assessment instruments designed to evaluate physical functioning include measures of general physical health, such as bed days, restricted activity days, and predicted life expectancy; measures of self-care activities, such as bathing, dressing, and feeding; and measures of home management and independent functioning, such as shopping, cooking, using a telephone, taking medications, and managing money. Although many of the same activities are included in several measurement instruments, differences in wording and scales may mean that results using different instruments may not be comparable and some instruments may be more useful in certain settings than others (43). Several conceptual problems in the measurement of physical functioning have been noted. First, the functional ability of elderly individuals is known to vary from day to day as a result of fatigue, acute illness, and other factors, making it difficult to arrive at a single measure of physical functioning. Second, both motivation and opportunity affect physical functioning (43), and there may be a need to distinguish between those who are unable to perform a certain function under any circumstances, those who are not motivated to perform the function, and those who do not have an opportunity to perform the function, such as nursing home residents who do not need to cook and often are not allowed to shower without assistance. Third, functional ability can sometimes be improved with the use of assistive devices, and assessment measures differ in the way that functioning with the use of an assistive device is handled (43). Assessment measures have been used extensively in the National Long-Term Care Channeling Demonstration Program described later in this
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Ch. 7Technologies, Functional Impairment, and Long-Term Care l 209 chapter. Preliminary findings on the use of these measures indicate several areas of physical functioning that are not adequately evaluated with available measures. These include: 1 ) deficits in vision, hearing, and speech that can have a major impact on the ability to function independently, 2) the relative ease or difficulty with which an individual performs a certain function, and 3) the individuals potential to perform a certain function in a different setting or with rehabilitation training (77). Each of these issues is important for the evaluation of an indiviuduals need for long-term care services. Measures of Mental Functioning.Assessment instruments havee been developed to measure three main aspects of mental functioning: cognitive functioning, affective functioning, and general mental health. Measures of cognitive functioning focus on orientation to person, place, and time; personal and current information; attention; comprehension; and memory. Measures of affective functioning focus primarily on depression, and measures of general mental health generally screen for psychiatric illnesses (43). Valid assessment of mental functioning is even more difficult than assessment of physical functioning, partly because of problems in defining conditions such as (confusion, dementia, disorientation, and depression [84)140). In addition, mental functioning in the elderly is often affected by acute and chronic illnesses and by medications prescribed for these illnesses (43); as these physical factors change from day to day, mental functioning may also change. It is also difficult to separate cognitive impairment from depression since some depressions have symptoms like dementia in the elderly (43). For these reasons, the reliability and validity of measures of mental functioning have been difficult to establish. It has been suggested that the available measures of mental functioning should be used only as gross screening tools for identifying individuals who need more intensive evaluation (140). A major problem in using measures of mental functioning in long-term care is that the relationship between impaired mental function and a need for long-term care services has not been established. It is known that some individuals with considerable memory problems are able to function safely in their familiar home environment, while others who perform well on tests of memory may be subject to occasional or continuous confusion or agitation that limits their ability to function independently (140). Some recent research indicates that severity of functional impairment may be related to the loss of specific cognitive functions. One study suggests that individuals with primary losses in memory and orientation had less severe functional impairment, while those with primary losses in attention and recognition were more severely impaired (133). Commonly used mental status measures that emphasize memory and orientation may therefore not distinguish accurately between those who are able to care for themselves and those who need assistance with self-care as a result of mental impairment (142). Increased understanding of the relationship between loss of specific cognitive functions and the need for longterm care services is important for identifying individuals who need care, designing appropriate care systems, and estimating the future size of the long-term care population. Measurement of Social Functioning and Environmental Fit.Evaluation of social and environ mental functions affecting the impaired individ ual is important for decisionmaking in long-term care (43,140). Informal support provided by family and friends often allows mentally and physically impaired individuals to remain at home rather than be placed in a nursing home. Similarly, the characteristics of the individuals environment, including the physical layout and any rules, regulations, or external constraints will often affect his well-being and his ability to function independently (43). Despite the recognized importance of social supports and environmental characteristics for the impaired elderly, it has been difficult to develop valid assessment tools to measure these factors. Although the general concepts of social functioning, social supports, and environmental fit are clearly related to long-term care needs, it is difficult to specify the aspects of these concepts that are most relevant to long-term care decisionmak ing. In addition, interpretation of results is complicated by lack of norms and by important differences in the way that individuals react to social
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210 l Technology and Aging in America and ernvironmental realities (12,43), For example, some individuals may be satisfied with much less social interaction and fewer social activities than others. Similarly, rules and environmental constraints that are experienced as very restrictive by some individuals may have a neutral or positive effect on others. objective measurement of the complex interaction between the individuals preferences and expectations and the reality of his physical and social environment is difficult, Kane and Kane (43) have discussed measurement tools in three categories: social interactions and resources, personal coping and subjective well-being, and environmental fit. Some measures in each of these categories have been developed for use in long-term care decisionmaking, while others were designed for use with the well elderly or for individuals of all ages. Measures of social interactions and resources generally include items about the existence and location of family and friends, frequency and quality of intergenerational contacts, and other social activities. Measures of personal coping and subjective well-being include scales on life satisfaction, morale, happiness, adaptability, and coping skills. The third category, environmental fit, includes measures to describe the individuals environment, rules, regulations, and programmatic aspects of his living situation, and the fit between his characteristics and aspects of his environment. Multidimensional Measures. -Multidimensional assessment measures are designed to provide information about many different aspects of client functioning, including physical, mental, social, and environmental. Examples include: the Sickness Impact Profile (SIP), developed to assess the outcome of health care; the Older Americans Resources and Services instrument (OARS), developed at Duke University and used in a GAO study in Cleveland, OH; the Comprehensive Assessment and Referral Evaluation (CARE), developed for the United States-United Kingdom Cross-National Project; and the Patient Appraisal and Care Evaluation (PACE), developed by four universities for use in the management of patients and for administrative and research purposes (43). Issues of reliability and validity have been particularly troublesome with multidisciplinary measures, particularly questions about inter-rater reliability and how to evaluate the validity of these measures. Several general issues affecting the use of multidisciplinary measures and all geriatric assessment technologies are discussed here. ISSUES IN ASSESSMENT TECHNOLOGY which Instrument to Use.The large number of available assessment tools presents a difficult choice for geriatric practitioners. Many of these measures have been developed for research or demonstration projects. Measures developed for research and demonstration programs are often too long to be practical for widespread use by geriatric practitioners.l s In addition, researchers have often devised new instruments or adapted existing instruments to precisely serve the purpose of their projects; this increases the number of available instruments and does not help to test the validity or reliability of existing measures (20). Assessment can serve a variety of purposes, including description, screening, diagnostic and treatment planning, monitoring changes, and preiqt has &n estimated that under the existing payment structure family physicians, general practitioners, and internists cannot be expected to spend longer than 5 additional minutes in assessment of their elderly patients (45).
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Ch. 7Technologies, Functional Impairment, and Long-Term Care l 211 dieting outcome; certain assessment measures are believed to be more appropriate for one purpose than another (43). A concise pamphlet for practitioners on available assessment tools and appropriate uses is needed. Incentives for Use.As described earlier, there is little incentive for widespread use of assessment measures. Comprehensive functional assessment is generally not required for public funding of long-term care services, and neither Medicare nor Medicaid provide reimbursement for the physicians time spent in functional assessment. Required use of a comprehensive functional assessment measure as part of eligibility determination for publicly funded long-term care services would create an incentive for use of these measures. A 1977 report by the Institute of Medicine has recommended this approach: The Federal Government should reimburse for long-term care provided to the functionally dependent elderly Eligibility for Federal reimbursement of long-term care should be based on a comprehensive assessment process (41). Functional assessment is recommended to serve a gatekeeper function for long-term care services as well as to assure appropriateness of care for the individual patient (41). Selection or development of a comprehensive functional assessment instrument for determining eligibility for publicly funded long-term care services would require choices about the most important factors to measure and the most appropriate structure and wording for the test instrument. The required use of such an instrument would, however, eliminate uncertainty about which one to use, and repeated use of the same instrument would allow for extensive evaluation of reliability and validity and subsequent refinement of the instrument. Physicians and other long-term care providers now spend considerable time on forms to establish eligibility of patients and clients for publicly funded long-term care services. A comprehensive functional assessment measure might be substituted for other currently required forms. Since public funds pay such a large proportion of longterm care services, agencies required to use an assessment measure for publicly funded services might gradually extend the use of this measure to privately funded services as well. The Value of Scoring. Some assessment measures result in numerical scores on individual sections or an overall score on all sections of the test. These scores are used to indicate degree of impairment in physical or mental functioning, or the extent and kind of services needed, and can also be used to measure improvement or deterioration in an individual patient. In some States, scores on comprehensive assessment measures are used to determine eligibility for certain long-term care services; for example, in New York State elderly individuals who score over 180 on a comprehensive functional assessment measure are eligible for Medicaid-funded nursing home placement (140). Although scoring has been used extensively for research and administrative purposes, there is great concern about the validity of this process. Little information is available about the relative importance of various aspects of functioning. It has been pointed out that these scoring systems often assume that the items being scored consist of a systematic, ordinal set of characteristics of a single phenomenon (e.g., total physical functional disability, total mental disability, total physical plus mental disability, etc. ) (140). In fact: The items being scored are rarely if ever of an ordinal nature, (and) there is no basis for assuming an ordinal relationship (between items) in which a given score would represent a given degree of total mental function and a specific higher score would represent a predictably proportionately better level of total mental functioning (140). The use of overall scores for the evaluation of an individual patient tends to obscure information about specific problem areas, but scores on selected test items can be used the way the results of lab tests are used, to indicate the presence or absence of a problem that requires further analysis (140). Who Should Do the Assessment. -Comprehensive functional assessment involves two steps: collection of the necessary information and analysis of the information. Each of these procedures
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212 Technology and Aging in America can and is being done in various settings by individuals with or without special training in geriatric assessment, by physicians, social workers, or nurses, and by teams of health care professionals, each collecting and analyzing information in his area of expertise. Information can also be collected and analyzed by computer. The decision about who should do the assessment depends on numerous factors that interact: the purpose of the assessment, availability of funding for collection and analysis of the information, availability of trained staff to do the assessments, degree of confidence in the reliability and validity of the assessment instrument, and beliefs about the role and importance of clinical judgment in the collection and analysis of the information. Some experts have suggested that since many physicians have been reluctant to spend the time needed for comprehensive assessment, these assessments should be available through geriatric assessment centers in local jurisdictions. At present, comprehensive functional assessment measures are sometimes used for research and administrative purposes without the additional evaluation of a trained professional, yet it is generally believed that adequate patient care and long-term care planning require clinical judgment. In fact, some experts believe that assessment measures should only be used as general screening tools to identify individuals who need further evaluation by trained professionals. Others believe that formal assessment tools are not needed for patient care when a trained professional is available to evaluate the patient; even in this case, however, assessment measures can help remind the clinician of important factors to evaluate. In addition, the common language of the assessment measure provides a method for teaching geriatric care and communicating between disciplines (91). The role of the patient and his preferences has received relatively little attention in discussions of comprehensive assessment measures. Since patient motivation and expectations are known to affect response to chronic disease and impairments, this issue needs more attention. In this context, adequate procedures for maintaining confidentiality of patient records are especially important since information about all aspects of the patients functioning is available on the assessment form. Assistive devices and rehabilitation techniques Technologies to maintain or increase the independence of the elderly include assistive devices and rehabilitation techniques that compensate for functional impairment. For some individuals the appropriate use of these technologies will postpone or eliminate the need for institutionalization or extensive home care services; for others the use of assistive devices and rehabilitation techniques can reduce the burden of care on family and friends. In nursing homes and board and care facilities, these technologies can improve the quality of life for residents by maintaining some level of independent functioning and decreasing the need for staff assistance. The goal of rehabilitation is to maintain or restore independent functioning, rather than to cure disease. For the elderly, this approach is particularly important because many of the diseases that affect the elderly are not curable at present. Rehabilitation technologies can help an individual to function independently despite underlying disease conditions. Even relatively small improvements in functioning can make a difference in selfcare ability. For example, a stroke victim who can learn to transfer from bed to wheelchair and wheelchair to commode can be independent in many self-care activities (140). Similarly, an individual with severe tremor due to Parkinsons disease can continue to feed himself using devices such as splints and special eating utensils, thus avoiding the need to be fed and associated feelings of dependence and loss of control. REHABILITATION TECHNOLOGIES Many assistive devices have been developed to compensate for functional impairment. They range from such simple devices as a long-handled soaper to help an individual with limited arm mo-
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Ch. 7Technologies, functional Impairment, and Long-Term Care 213 tion to bathe himself to such highly sophisticated Sources of information about assistive devices devices as voice-controlled robots for bedridden include computerized data systems and catalogs patients that are being developed by the Veterans produced by public agencies and private manuAdministration/Stanford University Robotic Aid facturing and retail companies. ABLEDATA, a Project (32). Some examples of assistive devices computerized data base sponsored by the Nato compensate for common impairments of the tional Institute for Handicapped Research, curelderly are shown in table 16. rently lists more than 6,000 products for disabled Table 16.-Examples of Assistlve Devices for the Functionally Impaired Elderly a Impairment Simple devices Complex devices Vision Lighted magnifying glass Electronic reading machine that converts Large-print books printed material to speech Hearing Hand-held speaking tube or horn Infrared hearing system that transforms an audio signal via infrared light beam to a receiver worn by the listener, thus suppressing background noise that is a problem for hearing aid users (57) Speech Manual communication board; the inElectronic communication board with dividual points to a symbol or what he memory and print-out capability. The wants to say individual uses a switch to activate a cursor on the board to indicate words or messages (19). Portable speech synthesizer (8) Memory Pad to keep notes for reminders Clock radio system that verbalizes reminders and automatically controls some appliances Mobility Braces and splints Computerized electrical impulse device to stimulate muscles and allow paralyzed persons to walk (40) Canes, walkers, and wheelchairs Voice-controlled, electric wheelchair that can open doors and manipulate switches (8) Ramps Electric chairlift for stairs Upper extremity weakness Reachers and grippers Prosthetic control system using electronic Levers to facilitate turning door knobs sensors and mechanical transducers to and faucet handles operate a prosthetic arm (8) Bathing Shower or bathtub chair Hydraulic bath lift Long-handled soaper Horizontal shower (19) Dressing Velcro fasteners No complex devices known Clothing that opens in front Eating Utensils with built-up handles Automatic feeding machine (56) Toileting Bedside commode Commode with automatic toilet flusher, warm water bidet and hot air drying in a push-button unit (19) Shopping Shopping cart for a wheelchair user Shopping by computer Prepackaged, freeze-dried meals Cooking Suction gripper to hold a jar to be opened Robot that can prepare meals (56) Environmental control Switches and controls on extension cords Computerized remote environmental conthat can be reached by the patient trol system to allow a bed or chairbound patient to adjust lights, radios, TVs, thermostats, and other electrically controlled appliances (19) a these devices were selected to illustrate the kinds of assistive devices that are available. Thousands of other devices are also availabfe. SOURCE: Office of Technology Assessment.
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214 l Technology and Aging in America persons of all ages. other computerized data systems include Accent on Information, a proprietary system developed by Raymond Cheevers, and Automated Retrieval of Information on Assistive Devices (ARIAD), developed and maintained by Louisiana Tech University (108). Several catalogs list assistive devices for the elderly. For example, A Catalogue of Products and Services To Enhance the Independence of the Elderly, compiled at Drexel University, lists more than 250 products, including appliances, special clothing, and communications devices (5). The American Association of Retired Persons and the Western Gerontological Society are completing a catalog of about 400 devices that assist older persons to live independently at home. The catalog will be published in early 1985 (54). In addition to assistive devices, many rehabilitation techniques are used by physiatrists (physicians who specialize in rehabilitation), physical therapists, occupational therapists, nurses, and other health care professionals to assist disabled persons to maintain or improve their functioning. Rehabilitation techniques are included in this section with assistive devices because they are alternative technologies for maintaining independence and because the effective use of assistive devices often depends on the simultaneous availability of rehabilitation services and procedures (55). Like assistive devices, rehabilitation techniques can be simple procedures such as teaching a stroke victim and his family how to lay out his clothes to allow him maximum independence in dressing, or complex procedures such as the use of electronic sensing devices to provide biofeedback to a disabled person who is not able to sense the position of his feet or arms. Appropriate rehabilitation technology for any individual depends on an evaluation of functional impairments and residual function; that is, which functions the individual is not able to perform and which abilities and functions he retains. Assessment of the individual should determine the need for a simple device or a more complex one. often both a device and rehabilitation services are needed, For example, a person with degenerative joint disease may need both a cane or walker and physical therapy in order to maintain mobility. Successful use of rehabilitation technologies depends as much or more on matching the individual and the appropriate technology as it does on the existence of sophisticated devices and rehabilitation techniques (26). 16 CURRENT FEDERAL INVOLVEMENT IN RESEARCH AND DELIVERY OF REHABILITATION TECHNOLOGIES Many Federal Government agencies have programs of research, evaluation, or funding of rehabilitation technologies. Most of these are directed toward the needs of disabled individuals of all ages and focus on certain types of devices, a particular step in the process of designing and evaluating devices, or provision of devices and rehabilitation services to individuals. The National Institute of Handicapped Research (NIHR) 17 is the lead agency responsible for initiating, funding, and coordinating Federal research to benefit disabled persons of all ages. NIHRs longrange plan, submitted to Congress in January 1981, included recognition of the special needs of the disabled elderly and a commitment to relevant research. NIHR currently funds 21 Rehabilitation Research and Training Centers, including two focused specifically on the needs of the elderly: one at the University of Pennsylvania and the other at Rancho Los Amigos Rehabilitation Hospital, in affiliation with the Ethel Percy Andrus Gerontology Center and the School of Medicine of the University of Southern California (122,135). Federal funding for some assistive devices and rehabilitation services for the elderly is available through Medicare and Medicaid, and to a limited extent through State rehabilitation agencies supported in part by grants from the Rehabilitation Services Administration. The VA is a major provider of assistive devices and rehabilitation services for disabled veterans of all ages and is the Nations largest purchaser of assistive devices (69). Inhere is continuing debate about how to allocate research and delivery resources between simple, relatively inexpensive devices and technologically sophisticated devices. This debate at a policy level tends to focus more on devices than on the needs of the individual (34). ITNIHR was created by the Rehabilitation, Comprehensive serV ices, and Developmental Disabilities Amendments of 1978 (public Law 95-602) which moved the existing research programs of the Rehabilitation Services Administration in the Department of Health, Education, and Welfare (now, the Department of Health and Human Services) to the Office of Special Education in the Department of Education.
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Ch. 7Technologies, Functional Impairment, and Long-Term Care 215 The VA funds research in rehabilitation technology for disabled persons of all ages through its Rehabilitation Engineering Research and Development Program (122). FACTORS AFFECTING THE USE OF REHABILITATION TECHNOLOGIES BY THE ELDERLY Despite the availability of thousands of assistive devices and rehabilitation techniques, several problems limit the use of these technologies by the l l l l elderly: The elderly often have several functional impairments associated with multiple chronic diseases. Devices and techniques appropriate for one impairment may not be usable because of other impairments the individual has. Cognitive impairment can interfere with an elderly individuals ability to use an assistive device or respond to a rehabilitation technique. Negative stereotypes about the elderly and their potential for rehabilitation limit the interest and enthusiasm of rehabilitation specialists, and sometimes the elderly and their families, for obtaining and using rehabilitation technologies. Limited availability of skilled rehabilitation personnel in long-term care settings restricts access to assistive devices and rehabilitation services. Other problems limit the use of rehabilitation technologies by disabled persons of all ages. These include difficulties with production, marketing, funding, and repair of assistive devices. Lack of effective methods for getting devices from inventors to individuals who need them is a major obstacle to the use of these technologies (122). The Impact of Multiple Impairments.Many elderly individuals suffer from multiple chronic diseases with resulting functional impairments, and this affects the kinds of assistive devices and rehabilitation techniques they can use effectively (19). Rehabilitation technologies are often designed to compensate for impairment by substituting another function, yet this substitution of one ability for another is difficult when multiple impairments are present in the same individual. For example, an elderly individual who cannot walk because of an amputation, hip fracture, or osteoarthritis may not have the stamina to use crutches or a walker because of cardiovascular or respiratory disease. Similarly, an elderly blind person with paralysis of an arm due to stroke or decreased tactile sense due to diabetes will not be able to use braille to read. Assessment of all the individuals functional impairments and residual strengths is a prerequisite for matching the individual and appropriate devices and services. Locating devices for an individual with a specific combination of impairments often requires a wide knowledge of available devices or a time-consuming search through catalogs. Although data are not available, it is likely that many assistive devices purchased for elderly individuals with multiple impairments are not used because the individual lacks the residual abilities needed to use the device. Physiological changes that occur with normal aging can also restrict the use of rehabilitation technologies. These changes include decreases in visual acuity and hearing ability, decreases in touch sensitivity and fine motor control, decreased grip strength, and decreased capacity of the body to respond to environmental extremes (4). While these changes may not limit the functioning of the healthy elderly individual, they lessen capacity to compensate for impairments resulting from acute and chronic disease. For example, decreased grip strength may not interfere with the functioning of the healthy elderly person but can hamper the ability of a mobility-impaired individual to use a cane or grab-bars effectively. Awareness of the physiological effects of normal aging is essential for the design of rehabilitation technologies for the elderly. The Impact of Confusion on the Use of Rehabilitation Technologies.Although only a small percentage of all elderly persons have symptoms of confusion or organic brain disease, large percentages of the long-term care population are affected, including up to 50 percent of nursing home residents and 20 percent of community dwelling elderly over 80, The impact of confusion on their ability to use rehabilitation technologies has received little research attention, al-
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216 Technology and Aging in America though anecdotal evidence indicates that it is an important factor. A recent study of patients in rehabilitation facilities in Canada (99) showed that confused patients did not respond well to standard rehabilitation techniques. After a year 59 percent of notconfused patients had returned home, but only 16 percent of the severely confused patients had done so. The authors conclude: The standard rehabilitation approach depends on the patient learning ways to deal with the disability and practicing techniques taught by the therapist, Intellectual dysfunction impairs learning ability. Accordingly, it is not surprising that our data demonstrate this approach is not more effective than a standard supportive approach in which spontaneous improvement can occur. The authors recommend the development of rehabilitation methods specifically for confused patients. Confusion restricts the ability of the disabled elderly person to learn to use assistive devices such as walkers, hearing aids, or simple devices to help in dressing, bathing, or eating. Sometimes it is even difficult for the confused person to remember what the device is for. Failure to assess cognitive functioning may result in the purchase of assistive devices that are inappropriate for the patient. Research findings about the effectiveness of rehabilitation technologies are also affected by the existence of mental confusion in the long-term care population. Formal research that does not distinguish between patients who are confused and those who are not may reach ambiguous conclusions, reflecting a mixture of positive results with one group of subjects and negative results with another group. Similarly, informal evaluations by long-term care providers who use rehabilitation technologies may produce neutral or negative results because many patients are too confused to learn to use the devices or respond to the rehabilitation techniques. As a result, providers often become discouraged about the efficacy of these technologies in general. Formal research that is clearly structured to differentiate between confused and not-confused subjects can help to identify technologies appropriate for these two groups of patients. Negative Attitudes About the Rehabilitation Potential of the Elderly.The belief that the elderly deteriorate inevitably, both physically and mentally, is widespread in our society, and affects the elderly, their families, health care professionals, and long-term care providers. The sense of hopelessness resulting from this belief is a significant barrier to the use of rehabilitation technologies. As a result of these negative stereotypes, many elderly persons resist thinking of themselves as old and deny impairments that they think make them seem old. They may refuse to use assistive devices such as canes, walkers, and hearing aids that call attention to impairments even though use of these devices might help to maintain independent functioning. Other elderly persons, especially those who are recovering from a debilitating acute illness, accept the negative stereotypes about the inevitable deterioration and adopt a sense of hopelessness about recovery (19). In this state of mind, they are unlikely to respond well to rehabilitation services. Family and friends of disabled elderly persons can bean important source of motivation and concrete assistance in obtaining assistive devices and helping the individual to install or learn to use them. Family members can help locate rehabilitation services, provide transportation, and encourage the disabled individual to cooperate with the rehabilitation plan, but family and friends who accept the stereotyped view that deterioration is inevitable are unlikely to offer encouragement and assistance in obtaining these services. Health care professionals and rehabilitation specialists often share societys negative view of the elderly. Most physicians and nurses prefer younger patients and those whose ailments are curable (87), and some rehabilitation counselors also exhibit bias against the elderly (110). These negative attitudes result in lack of enthusiasm for the rehabilitation of the elderly and relative lack of rehabilitation research and services for this age group (61). Nevertheless, a recent study of rehabilitation in the very old patient (76) showed significant improvement in 79 percent of the 97 patients studied, all of whom were over 85. Interestingly, a computer search of U.S. literature failed to find any previous study of rehabilitation results with very old patients (76).
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Ch. 7Technologies, Functional Impairment, and Long-Term Care l 217 Photo credit: Gretchen Kolsrud Many elderly patients can improve significantly with appropriate rehabilitation services. The authors of a 1983 report emphasize the importance of well-designed research and clinical trials on rehabilitation of the elderly. They state: We want to avoid the self-fulfilling prophecy that shows elderly persons at poor risk for rehabilitation because statistics show less good results when, in fact, fewer therapies were offered in the first place (46). They point out that evaluation of the rehabilitation potential of elderly patients is difficult when so few of them are ever offered rehabilitation at all. Limited Availability of Skilled Rehabilitation Personnel in Long-Term Care Settings.Most rehabilitation services and technologies for the elderly are provided in hospitals by physiatrists, physical therapists, occupational therapists, speech therapists, and nurses. As home care services have expanded, some of these rehabilitation specialists have begun working outside the hospital setting. As yet, however, too few are available to meet the needs of nursing home residents and community dwelling elderly. For example, occupational therapists are trained to evaluate functional impairment, locate or design appropriate assistive devices, and teach individuals to use them. Of the 35,000 members of the American Occupational Therapy Association, fewer than 3,000 work with elderly patients, and most of these work in hospitals. Medicare funding for rehabilitation services outside the hospital is restricted by complex regulations about who provides the service and in which setting. Moreover, the patient must show improvement; services needed to maintain functioning are not reimbursable. Medicaid funding for rehabilitation services is available in some States, but coverage is limited, and the level of reimbursement is usually considerably below customary charges for these services. Rehabilitation services for nonelderly adults are often provided and paid for by State rehabilitation agencies. These agencies receive 80 percent Federal funding as mandated by the Rehabilitation Act of 1973 and provide extensive services, including physical and mental rehabilitation, income maintenance during rehabilitation, transportation, counseling, mobility training for the blind, and telecommunication, sensory, and other assistive devices (122). Although the Rehabilitation Act of 1973 includes no age criteria, it specifies that services be directed toward making the disabled person employable. This focus on employability has resulted in the virtual exclusion of the elderly from these services (71); figures from the Rehabilitation Services Administration for 1978 show that of the 290,213 persons who received rehabilitation services through federally funded State rehabilitation agencies, only 2.2 percent were over 65 (14).
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278 l Technology and Aging in America The Rehabilitation, Comprehensive Services, and Developmental Disabilities Amendment of 1978 (public Law 95-602) extended eligibility for federally funded rehabilitation services to severely disabled individuals who do not have employment potential. Mandated services include architectural modifications of homes and other living environments, attendant care, physical therapy, and assistive devices to help disabled individuals to function as independently as possible within their families or communities and to prevent or postpone institutionalization (139). This focus on independent living services would seem to address the needs of the disabled elderly, except for two continuing problems. First, although some funds have been appropriated to set up rehabilitation programs for independent living, no funds have yet been appropriated to pay for the mandated services. Secondly, the elderly are in direct competition with younger disabled persons for services under these programs. Given the traditional focus of rehabilitation agencies on younger persons, the obvious need for rehabilitation services in the younger age group, and funding limitations, it is unlikely that the disabled elderly will receive substantial benefits from these programs without a significant redirection of financial and staff resources. problems in Production, Marketing Funding and Repair. -Ongoing difficulties in the production, marketing, funding and repair of assistive devices also restrict the use of these technologies by the disabled elderly. These problems include: Inadequate Production and Marketing of Needed Products: Many potentially useful devices are invented but never produced or marketed because companies are reluctant to invest in the manufacture of devices without an identifiable market for the product (7,55). In many cases the number of disabled people who can actually benefit from a certain device is relatively low, potential users are often difficult to identify (33), and small companies that are frequently the source of innovative products may lack the financial or staff resources to launch the kind of marketing campaign needed to reach potential users. Lack of Information About Available Technologies: Lack of information about assistive l devices and rehabilitation techniques is an ongoing problem. Although computerized data systems and catalogs of devices have been developed to solve the problem, the information gap persists. Researchers complain that it results in frequent instances of reinventing the wheel (10, 107). Disabled individuals, their families, and service providers continue to have difficulty finding out about appropriate technologies. Meanwhile, companies with innovative products and services struggle to find ways to make their products known to service providers and the disabled (34). Lack of Financial Resources to Pay for Assistive Devices and Rehabilitation Services: Three financial factors restrict purchases of rehabilitation technologies. First, disabled individuals as a group have lower than average income and are often unable to pay for these devices and services (55,122). Second, many devices are unexpectedly expensive because of the high costs of designing and marketing products to this relatively small group (33). Third, the many public and private agencies and programs that pay for rehabilitation technologies have uncoordinated and inconsistent definitions of who is eligible and what devices and services will be paid for. 18 Decisions about whether a device is covered under a certain program may vary from one part of the country to another, and can be made retroactively, so that neither the disabled individual nor the provider knows in advance whether the device or service will be paid for. In addition, the amount of payment for a specific device or service may be less than the full cost, and some devices are not covered at all (69). OTA has found that as a result of the lack of coordination among funding sources, users and providers are either unable to take advantage of available technologies or must spend enormous amounts ~aAvaj]abi]jty of funding for specific devices influences their production and use. Under some public programs, such as Medicare and Medicaid, such funding is authorized only when the devices are deemed medically necessary. Hearing aids, glasses, dentures, and communications devices are not covered by Medicare because they are not considered medically necessary, although they do compensate for functional disabilities of disabled persons (122). In some cases, disabled persons find themselves with an inappropriate device because it is the only one that is funded (55,73).
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Ch, 7Technologies, Functional Impairment, and Long-Term Care l 219 of time providing the coordination needed to best assist each individual (122). l Lack of Available Repair Services for Assistive Devices: Difficulties in obtaining repair services for devices such as hearing aids and wheelchairs limit their usefulness. Repairs frequently take weeks or even months and are often costly. Replacement parts are hard to find, and for someone who is dependent on the device for an important functional disability, the time spent waiting for repair of the device can be very difficult (27). INITIATIVES TO INCREASE THE AVAILABILITY OF REHABILITATION TECHNOLOGIES Evaluative Research.More research on the efficacy, safety, and cost of commonly used devices such as wheelchairs and hearing aids is needed, as are comparisons of outcomes when devices are used alone or in combination with rehabilitation training. Evaluation of rehabilitation technologies is one focus of the National Institute of Handicapped Research, The Veterans Administration, with its large population of disabled elderly veterans and its ongoing programs in both research and the provision of devices and services, also provides an ideal setting for evaluative research. Assessment. -Accepted, valid, functional assessment measures are a prerequisite for evaluation of rehabilitation technologies and appropriate matching of individuals and technologies. Especially significant factors to measure are multiple functional impairments, mental impairments, and psychosocial factors that affect the capacity of the individual to use available technologies. Public Education About Device.Initiatives to increase awareness of available rehabilitation technologies include advertising of specific products and public service advertising about the importance of rehabilitation technologies in maintaining independence and well-being. Advertising of specific products is clearly the responsibility of private industry, and some advertising of this kind, i.e., incontinence supplies, is currently underway in major national markets. Development of advertising for assistive devices has been difficult because the elderly tend to reject agerelated product identifications (2). The design of advertising messages that emphasize both age and disability is even more difficult, and media advertising directors have been reluctant to accept advertising for assistive devices because of anticipated negative reactions toad content. Although advertising for some types of assistive devices appears in magazines directed to the elderly and those with a health care focus, these publications do not reach all the individuals who might benefit from rehabilitation technologies or the families who often assist in obtaining them. Public service advertising is an option that has not yet been tried. Advertising could emphasize the importance of assistive devices in maintaining independence and counter the widespread belief that using these devices implies that an individual is old, useless, and unattractive. Although the potential impact of this approach remains speculative, it is relevant to consider the positive effect on attitudes and demand for hearing aids when president Reagan first appeared in public with a hearing aid. Ads could refer to available sources of information about specific devices and encourage careful evaluation of both the needs of the individual and the appropriateness of the device chosen. Awareness of Health Care and Service Pre vidershitiatives are needed to increase awareness of rehabilitation technologies among health care professionals and other service providers, such as physicians, nurses, social workers, physical therapists, occupational therapists, speech therapists, and staff members at senior centers, senior nutrition programs, and senior housing facilities. Although some of these individuals may have received training in some rehabilitation technologies, few have any knowledge of the wide range of technologies available. Retailers of assistive devices are generally untrained or trained through inservice programs provided by the manufacturers of the devices. They may develop expert knowledge about the devices they carry but rarely receive training in assessment techniques. The development of training programs for health care professionals and service providers has been a major focus of the two Rehabilitation Research and Training Centers in Aging funded by NIHR. Curricula and audiovisual aids for training in rehabilitation of the elderly are being de38-800 0 85 8
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220 Technology and Aging in America signed to increase knowledge about the elderly and to counter negative attitudes about rehabilitation potential, but the impact of these training programs has been limited by staff and funding restrictions at the centers, which were established only 3 years ago. Rehabilitation counselors in State rehabilitation agencies generally have training in both assessment and rehabilitation technologies but lack funding and appropriate goals for working with the elderly. Increased funding for independent living services mandated by the Rehabilitation, Comprehensive Services, and Developmental Disabilities Amendment of 1978 is needed. Realistic goals for rehabilitation of the elderly are also needed. In addition to goals such as increased independence and self-care, it is important to recognize the roles the elderly can fill as volunteers in the community and caregivers in their own families (9). Assistive Device Centers.Aids Centers, located throughout Sweden, enable disabled persons to look at assistive devices, try them out, and consult with rehabilitation specialists about which devices would be most helpful (35). In the United States, the Department of Justice maintains a Sensory Aids Center to evaluate and customize technological aids for its visually impaired and deaf staff members (112). In Sun City, a retirement community in Arizona, residents have organized a lending service for health care and rehabilitation appliances. Financial support is also available through the community for prostheses, glasses, and hearing aids (93) Development of assistive device centers in other locations would increase access to rehabilitation technologies by the elderly. Funding. -Increased funding for rehabilitation technologies through Medicare and Medicaid is unlikely at present because of budget limitations, and without increased funding, coverage cannot be extended to new categories of assistive devices. Nevertheless, development of nationally consistent standards for Medicare and Medicaid coverage would facilitate provision of devices. The need for increased public funding for assistive devices and rehabilitation services is not clear at present. The use of these technologies is limited primarily by lack of information, negative attitudes, and lack of a professional group with responsibility for assessment and matching of individuals and rehabilitation technologies for the elderly. Lack of funding discourages purchase of some expensive and technologically sophisticated devices, but many devices are relatively inexpensive, and recent reports tend to refute the idea that most of the elderly are poor (4). It is not clear how many elderly persons would be unable to pay for these devices if they knew about them and believed that the devices would help to maintain independence. Technologies for caregivers Technologies for caregivers include devices and procedures to facilitate and improve caregiving, Long-term care has traditionally been labor-intensive, with little emphasis on technology. Few labor-saving devices are used, and caregivers, including both informal caregivers and paid personnel, often receive little or no training in efficient methods of care. As a result, staff turnover is very high in long-term care facilities, and families and other informal caregivers become overburdened and exhausted. Many technologies have the potential to facilitate long-term care. In this section, technologies to assist caregivers with three types of care are reviewed: 1) care for individuals with medical or skilled nursing care needs, 2) care for physically impaired individuals, and 3) care for mentally impaired individuals. CARE FOR INDIVIDUALS WITH MEDICAL OR SKILLED NURSING CARE NEEDS In the past few years, medical treatment that was previously provided only in hospitals has become increasingly available outside the hospital. This change has been spurred by the hospital utilization review process that discourages unnecessary hospitalization and by the availability of reimbursement for home health care through Medicare, Medicaid, and private insurance. The new Medicare prospective reimbursement system (DRGs) is increasing the need for medical services outside the hospital. Medical care devices and skilled nursing care are needed in the home and in nursing homes for patients who are discharged earlier from hospitals and continue to need medical treatment.
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Ch. 7Techrmlogjes, Functional Irnpairment, and Long-Term Care l 221 At present most nursing homes primarily provide personal care and supportive services under the supervision of a registered nurse. *g Patients who are acutely ill or need complex medical treatment are sent to the hospital because most nursing homes do not have the resources to provide the required treatments. As hospitals respond to the prospective reimbursement system, nursing homes are being pressured to accept patients who 19A~ of 1 g7g only I 5 percent of nursing home staffs were registered nurses (RN;), compared with 46 percent of hospital staffs, resulting in a nurse-to-patient ratio of 1 to 49 in the nursing home compared with 1 to 4-5 in the hospital (68). RNS in nursing homes are responsible for supervision of nursing tides and many other administrative tasks in addition to medication-monitoring and medical treatments. Photo credit: Gretchen Kolsrud Rehabilitation services can lessen the burden on caregivers by maintaining function even in the very frail elderly patient, need more acute care and more complex care than has been provided in the past. Technologies to provide more complex medical care in nursing homes include diagnostic and monitoring equipment and devices for sophisticated medical treatment. In addition, ancillary personnel with training in the use of these technologies will be needed. It has been suggested that geriatric nurse practitioners and nurse clinicians are well qualified to provide skilled and acute care services in nursing homes (67). 20 The availability of medical technologies and qualified nursing personnel is primarily dependent on payment levels and reimbursement policies of Medicare, Medicaid, and private insurance companies. At present, payment for nursing home care is generally not high enough to cover the cost of sophisticated medical technologies and highly trained personnel. Cost-based reimbursement policies with increased allowance for medical devices and skilled personnel would create an incentive for nursing homes to upgrade the level of care they can provide, but would also increase the cost of nursing home care. Federal and State initiatives to limit reimbursement for nursing home care restrict the provision of acute and skilled care services that may be required by the patient group that is discharged earlier from hospitals under DRGs. To a great extent, nursing homes can choose the patients they admit (see ch. 8). Without increased reimbursement for medical technologies and skilled nursing personnel, nursing homes are unlikely to admit patients with acute and skilled care needs because they do not have the resources to care for them. This creates severe hardship for patients who need ongoing medical care in an institutional setting and for hospitals forced to choose between discharging patients without adequate continuing care or keeping patients they are not being paid for. Although the availability of medical care technologies and skilled nursing care in the home has The geriatric nurse practitioner is a nurse with a masters degree in gerontologic nursing and training in managing patient care, providing routine physical care and physical tests, and acting as liaison with the patients physician. In addition, the geriatric nurse practitioner can provide staff training in the use of medical care technologies (42).
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222 l Technology and Aging in America increased greatly in the past few years, 21 demand for home health care will continue to rise as a result of the Medicare prospective reimbursement system. Primary concerns here are the continuing availability of highly trained nurses to provide skilled care and the existence of efficient mechanisms for testing and approving medical technologies for use in the home. Medical device regulation, which is the subject of several recent government reports 22 is not discussed here. The availability of skilled health care professionals to provide assistance and training for the patient and the family in the use of sophisticated medical devices is an important factor in the successful use of these technologies. CARE FOR PHYSICALLY IMPAIRED INDIVIDUALS Physically impaired elderly persons may require assistance with personal care activities such as bathing, dressing, eating, toileting, and mobility. Technologies to assist with these functions include devices that increase the ability of the elderly person to function independently (discussed in the previous section of this chapter), devices to assist the caregiver directly, such as machines to lift and move patients, and techniques to facilitate physical care. Although many devices and techniques for caregivers are available, they are not widely used, and caregivers are often unaware of these technologies. Two factors interact to perpetuate this situation: First, caregiving is not generally recognized as a skill in our society. The focus is on curing rather than skilled caregiving (60). Second, and related to the first factor, is the relatively low status of most caregivers, It has been pointed out that: Zlln cont~a~t to the nursing home situation, payment is availab]e for many medical care devices and skilled nursing visits in the home. In fact, Medicare reimbursement for one skilled nursing visit approaches the cost of a day of nursing home care in some parts of the country, although the nursing homes also provides 24-hour personal care, room and board, laundry service, and other supportive services. %AO, Federal Regulation of Medical Devices-Problems Still to Be Overcome, September 1983; House Subcommittee on Oversight and 1nvestigations, Medical Device Regulation: The FDAs Neglected Study, April 1983; and Office of Technology Assessment, Federal Policies and the Medical Devices Industry, OTi%-H-23(1 (Washington, DC: CJ.S. Governrnent Printing Office, October 1984). Photo credit: Gretchen Kolsrud This automatic chair lift is used to raise the patient comfortably into the whirlpool bath. Caring roles are for the most part performed by women with limited education, training, and professional identification and prestige, These are low paying jobs with virtually nonexistent status (60). Even when these low-status caregivers develop effective caregiving techniques, there is little recognition of their skills or diffusion of the techniques to other caregivers. Nurses, occupational therapists, and physical therapists are skilled in developing caregiving techniques for specific patients, but relatively few occupational therapists and physical therapists are employed in long-term care settings. Nurses provide training for nursing assistants in nursing homes and for home health aides and homemakers in home care agencies. Nevertheless, the lack of recognition for caregiving as a skill and the low status of caregivers limit the extent and effectiveness of this training. Family members and other informal caregivers are particularly unlikely to know about and use available devices and techniques. In many cases, the informal caregiver is the elderly spouse, who
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Ch. 7Techrfologies, Functional Impairment, and Long-Term Care l 223 has particular difficulty lifting and moving the patient in order to bathe or dress the patient or get him or her into a wheelchair. In fact, some nursing home placements occur when the caregiver has fallen or injured himself/herself trying to lift or move the patient. Packaging of information about devices and techniques for informal caregivers in a form that is easy to understand and use is an important priority in long-term care. Many devices for physical caregiving are designed for use in an institutional setting, and there is a need for devices developed specifically for home and the informal caregiver. CARE FOR THE MENTALLY IMPAIRED INDIVIDUAL A large proportion of nursing home and board and care residents are mentally impaired, and many families are caring for severely confused elderly individuals at home, yet there has been relatively little attention paid to caregiving technologies appropriate for these individuals. The focus of Federal funding programs on physical illness and medical treatment has tended to obscure the care needs of mentally impaired individuals, but recent interest in Alzheimer disease has resulted in a growing literature on caregiving techniques for all mentally impaired patients. Some of this information is new, but much of it reflects existing knowledge of long-term care providers who have developed expertise in caring for these patients. Effective care for mentally impaired individuals involves techniques for handling a variety of dif ficult problems. Table 17 lists the problems cited by families caring for mentally impaired individuals with Alzheimer disease, multi-infarct dementia, and other organic brain diseases (82). Technologies to address three of these problems, forgetfulness, agitation and catastrophic emotional reactions, and wandering, are discussed here. Forgetfulness. Increasing forgetfulness is characteristic of mentally impaired individuals and ranges from forgetting where one left certain objects to forgetting ones spouse and children and forgetting how to dress, eat, and use the bathroom. Memory training techniques have been tested with some evidence of short-term gain but little lasting improvement (143). Further research on a variety of approaches to maintaining memory function is needed. For individuals with severe forgetfulness, caregivers can often help to maintain orientation with reminders about the date, the time, and other daily information. Several simple devices can also be useful. Labels on objects can remind the individual of the name of the object and illustrate its use with a simple drawing. Signs on doors, especially bathroom doors, can also be helpful. In one facility when a patient is so confused that he cannot answer any questions about himself, a colorTable 17.Behavior Problems of Patients Cited by Families Number of Number of families Number of families families reporting reporting behavior to Behavior responding occurrence ( 0 /0) be a problem (o/o) Memory disturbance. . . . 55 55 (1000/0) 51 (930/0) 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 (82) Meals . . . . . . 55 33 (60) 18 (55) Daytime wandering . . . 51 30 (59) 21 (70) Bathing . . . . . . 51 27 (53) 20 (74) Hallucinations . . . . 49 24 (49) 16 (42) Delusions . . . . . 49 23 (47) 19 (83) Physical violence . . . 51 24 (47) 22 (94) Incontinence . . . . 53 21 (40) 18 (86) SOURCE: P. V. Rabins, et al., Journal of the American Medical Association, 246(3) -335, July 16,1962. Copyright 1982, American Medical Association.
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224 l Technology and Aging in America ful poster is placed outside his room, giving his name and some information about his family and his past and providing staff and visitors something real to talk to the patient about (136). Little information is available about effective techniques for maintaining the individuals memory of how to care for himself (bathing, eating, toileting, etc.). This is partly because in many longterm care settings, no distinction is made between patients who need help with these functions because of mental impairment and those who need help because of physical impairment, and staff members tend to provide the same kind of assistance for both groups. Informal caregivers often provide physical assistance instead of using techniques that support the individuals ability to perform self-care functions himself. Research on effective techniques for maintaining memory of self-care functions is needed. Agitation and Catastrophic Emotional Rem action&Agitation and catastrophic emotional reactions are major problems for caregivers. These behaviors are related to memory loss because the individual becomes agitated and angry when he cannot remember or understand people and events in his environment. Although there are no devices to cope with this problem, medication can be used. Unfortunately some medications that are frequently used for this purpose also reduce alertness and other cognitive functions. Certain caregiving techniques and systems can decrease the frequency and severity of agitation and catastrophic reactions. Informal and paid caregivers can learn to divert the individuals attention from upsetting issues or events and to avoid presenting the individual with tasks he is not able to perform (82). In addition, caregivers can be aware of the impact of daily events on the mentally impaired individual. For example, in the institutional setting, mentally impaired individuals may become agitated when shift changes or visitors to the facility cause high levels of activity and noise. An understanding of the effect of these events on the confused person can result in environmental and scheduling changes that decrease the frequency of catastrophic emotional reactions. Wandering. Wandering is a difficult problem for families and long-term care facilities because mentally impaired patients, particularly those with Alzheimer disease, are often physically healthy and able to wander away quickly, becoming lost and endangering their safety. As a result, they require constant supervision. Some mentally impaired wanderers believe they are going to a specific place or accomplishing a specific job, while others seem to wander aimlessly, drawn from one stimulus to another (105). This behavior often increases when the individual becomes agitated, and one study has suggested that wanderers may be individuals who had a lifelong pattern of responding to stress with activity, such as walking or pacing (70). Methods for preventing wandering have included the use of drugs, which often have side effects that worsen the individuals physical and mental condition, protective devices that involve tying the patient to a chair, and locked doors that prevent the individual from leaving a certain area. In a long-term care institution, the availability of a locked nursing unit allows the wanderer to move around freely within the unit; the locked unit is, however, very restrictive for other residents who are not confused (28). For the informal caregiver, living in a totally locked space with a mentally impaired individual can be extremely stressful. Technologies for wanderers include devices, programs, and environmental design to allow some freedom of movement while maintaining the caregivers sense of certainty about where the individual is. Some long-term care facilities have installed electronic monitoring systems that activate an alarm at the nurses station when a patient wearing the signaling device goes through a monitored doorway, These devices cost up to $1)000 per monitored door. other facilities have installed special door knobs and locks that can easily be opened by mentally normal patients, staff, and visitors, but not by mentally impaired patients. Programs for wanderers include frequent structured and unstructured opportunities for physical exercise, such as exercise groups and walks with staff or visitors. Environmental design technologies include living areas and outdoor spaces structured with pathways that allow the individual to wander within an overall enclosed space.
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Ch. 7Technologies j Functional Impairment, and Long-Term Care l 225 SUPPORT GROUPS FOR CAREGIVERS Support groups for informal caregivers have been formed in many communities. Most of these groups are designed primarily to provide emotional support by encouraging caregivers to discuss the complicated feelings and difficult decisions involved in caring for impaired elderly individuals. In addition, support groups allow for sharing information about mental and physical impairments, available resources, and techniques of caregiving (37). Although there has been very little emphasis on technologies for informal caregivers, these groups could provide an opportunity for exchanging information about available devices. By providing emotional support and information for informal caregivers, support groups can help to decrease stress and may increase the willingness and capability of families to maintain impaired individuals at home. PROGRAMS FOR PHYSICALLY AND MENTALLY IMPAIRED INDIVIDUALS Effective systems of caregiving include not only devices and procedures for physical care but also a program of social and recreational activities. While these activities provide diversion and entertainment, they can also increase the patients involvement with others and with his environment. Activities designed to foster a sense of usefulness, involvement, and responsibility can help to overcome feelings of helplessness that are common among long-term care patients, Examples of these activities include: l l l l l resident councils and other self-government activities; formal and informal opportunities for individuals to assist other patients, such as the Retired Senior Volunteer Program (RSVP) that has been set up in some nursing homes to recognize and support volunteer efforts of patients for other patients; group projects to benefit the nursing home or a community agency, such as the Rock and Roll Jamborees held in some nursing homes to benefit the Heart Association; opportunities to care for plants or gardens; and pet visitation programs. Photo credit: Gretchen Kolsrud In Montgomery County, MD, 4-H clubs have trained parakeets to be given as pets to nursing home residents. By supporting the patients sense of active involvement and competence, these activities can increase self-esteem and counter feelings of helplessness and dependency that undermine motivation for independent functioning and self-care. Long-term care delivery systems Methods of providing long-term care services for the elderly include organizations and funding mechanisms for developing and coordinating resources and matching the needs of the individual with appropriate services and facilities, such as nursing homes, board and care facilities, home care, adult day care, hospice, and congregate housing. Some or all of these services are available in most communities, but the complexity and fragmentation of long-term care services at the community level make it difficult to connect elderly individuals with the services they need. Decisions about long-term care are often extremely traumatic for the elderly and their families. These decisions are frequently put off until a crisis point is reached because of the intense
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226 l Technology and Aging in America emotional issues that are involved. The elderly fear loss of independence and the possibility that they will have to move from a familiar home environment. Families may experience a combination of sadness about the elderly individual and guilt that they are unable or unwilling to provide the care that is needed. Within this complex emotional environment the fragmentation of the service delivery system at the community level compounds the trauma to the elderly individual and the family. This section discusses the existing service delivery system, and alternative methods for linking the individual with appropriate long-term care services. THE PATCHWORK OF SERVICES In most communities Iong-term care services are provided by a variety of public and private agencies with differing eligibility requirements, services, and funding mechanisms, resulting in what one author has called a patchwork array of services (24). The services are generally not coordinated. overlapping services and gaps in available services are common, and there is often no single source of information about what services are available. As a result, it is difficult for patients, their families, physicians, and other health care and social service providers to locate appropriate services. When impaired elderly individuals need several long-term care services from different agencies, coordination can be very difficult (3,132). The fragmentation of agencies and services at the community level is partly a result of the way these services have developed over time. New agencies have been created in response to specific needs, and there is often no comprehensive plan for how the new services will mesh with existing services in the community. Another and perhaps more important cause for the fragmentation is the complexity and lack of coordination of regulations controlling government programs that fund these services. As stated earlier, government funding programs have a substantial impact on the kinds of services that are available at the community level. Although some private agencies do not accept any government funding, most agencies and long-term care facilities provide at least some government-funded services, and as a result, their services and eligibility requirements usually reflect government regulations. Government regulations about services that are reimbursable often define which services are available in the community because agencies tend to develop and provide those services that will be paid for. Similarly, regulations about the qualifications of agencies that are certified for reimbursement through government programs often define the kind of agencies that will be developed. Unfortunately, the government programs that have such a major impact on long-term care services are themselves uncoordinated. A 1977 GAO report described four Federal programs that provided funding for home care services at that time: Medicare, Medicaid, Title XX of the Social Security Act, and Title III of the older Americans Act. The report concluded that the various Federal home health programs defy coordination (115). Since that time, new regulations have tended to increase the complexity of these programs, 23 Other Federal, State, and local programs that affect the availability of long-term care services include Social Security, Supplemental Security Income (SS1), benefits available through the Veterans Administration, and programs developed and funded by State and local health departments and social service departments, Each of these government programs has differing eligibility requirements, benefits, and funding mechanisms, increasing the complexity of the long-term care system at the community level and limiting access to appropriate services by the elderly. METHODS FOR IMPROVING COORDINATION AN D ACCESS TO LONGTERM CARE SERVICES The fragmentation of the long-term care system has been noted for more than 20 years (21,100), and several methods have been developed to improve coordination and access to services. These include: 1) efforts to coordinate agencies and services at the community level, 2) case Zsstate and ]Oca] re~lations also affect eligibility, benefits, and funding for three of these programs; Medicaid, Title 111 of the older Americans Act, and the Title XX Block Grant.
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Ch. 7Technologies, Functional Impairment, and Long-Term Care l 227 management approaches designed to locate and coordinate services for the individual, and 3) efforts to provide a full range of long-term care services within a single agency or program. These methods are reviewed briefly here, and government initiatives to increase the role of individuals in planning their own long-term care are discussed. Each of these methods can be seen as an attempt to rationalize the system at the community level. While each is effective in some ways, they cannot change the underlying problem, which is the lack of coordination in the major Federal programs that regulate and finance long-term care. Coordination of Agencies and Services at the Community Level. Methods to improve coordination at this level can include: l l l l l formal mechanisms for exchanging information between agencies, such as the regular meetings of long-term care providers now held in some communities; development of a directory of all long-term care services available in the community; development of a centralized information and referral service; mutual referrals and cooperation in handling individual clients (case conferencing); and joint planning and policymaking to avoid du plication and gaps in available services. In the past, efforts to coordinate services have been organized by public agencies, such as the health department or the department of social services, or by a private agency or voluntary association founded for this purpose. This remains the pattern in some communities; in others, the Area Agency on Aging (AAA) has become the lead agency for coordination of services. one of the mandated functions of the AAAs, which were established by the older Americans Act, is coordination of community services for the elderly (3); in some communities AAAs have provided funding and organizational support for each of the approaches listed above. Efforts to coordinate services have been only moderately successful in most communities; inflexible Federal and State regulations, that often cause much of the complexity in the system, have been a limiting factor. Moreover, community agencies may resist coordination because of a commitment to existing agency structure and policies, C)ne author has pointed out that successful coordination of agencies and services is a timeconsuming and expensive process requiring a leader who is a super-being with optimum political skills, administrative competence, missionary fervor, and familiarity with the entire range of professional interventions and management techniques (21). Case Management Program&-A second method for coping with the fragmentation of the longterm care system and improving access to appropriate services is case management, a system for developing and coordinating client care plans and monitoring the treatment process (125). In the context of the complex array of long-term care services, it is the function of the case manager to assess the needs of the client, develop a plan of care, and arrange services to implement the plan. Many State and local communities have established case management programs, and a 1980 study by Andrus Gerontology Center identified more than 300 such programs. Most of these programs, however, did not coordinate a comprehensive range of services; some coordinated only social services, while others coordinated mainly health care services (125). Case management was a major component of several long-term care demonstration projects funded by the Federal Government in the 1970s 24 These projects were designed to test whether home and community based long-term care services could substitute for nursing home care, and the case manager was responsible for assessing the clients needs and referring the client to appropriate services. All of the projects also provided new home care services or new funding for services that were already available. Evaluation of the effectiveness of the case management approach in these projects is difficult because changes in client outcome could have resulted 24 of ~me demonstration projects are ACCESS, in Monroe County, NY; the Alternative Health Services Project in Georgia; the Community Based Care Systems for the Functionally Disabled in Washington State; the Wisconsin Community Care Organization; and Triage, in Connecticut.
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-. 228 l Technology and Aging in America from the case management, the new long-term care services, or both. None of the projects included a research design to test the efficacy of case management in reducing fragmentation of long-term care services for the clients (125). In 1980, the Department of Health and Human Services and the Administration on Aging jointly funded the National Long-Term Care Channeling Demonstration Program specifically to evaluate the effectiveness of case management in reducing fragmentation of services. Ten States are participating in the program to test two models of case management. Five States are using the basic channeling model that includes assessment of client needs, care planning, and arrangement of appropriate long-term care services. The complex channeling model being tested in five other States includes the basic case management functions plus several additional features: the case manager has authority over the amount and duration of noninstitutional health and social services the client receives, and the cost of services for all clients is capped at a level equal to 60 percent of the cost of nursing home care in the demonstration area. The Channeling Demonstration Program will run from 1982 to 1985, and result are expected to provide definitive answers about the effectiveness of case management in facilitating client access to appropriate long-term care services (79). The Facilitator and the Gatekeeper.The functions of the case manager in long-term care demonstration projects (including the channeling program) illustrate two different approaches to service delivery. In some demonstration programs and the basic channeling model, the case manager functions primarily as a facilitator, assisting clients to obtain appropriate services. In other demonstration programs and the complex channeling model, the case manager also functions as a gatekeeper, controlling and limiting access to services, especially high-cost services such as institutional care. Although there has been little discussion in the literature of the relationship between these two roles, they seem to involve inherent internal inconsistencies for the case manager who must decide whether to arrange for all the services the client needs or to focus on limiting costs. For the individual client who needs certain long-term care services, the facilitator approach could be expected to result in provision of those services. It is not clear whether the same services would be provided when the gatekeeper approach is used. Comparison of the results of the two models of channeling may help to resolve this question. The distinction between these two approaches reflects the two primary concerns of government in long-term care: concern with cost control and concern with providing access to appropriate services for the elderly. In the absence of a comprehensive national long-term care policy, the relative emphasis on these concerns can be expected to vary from one government program to another and from one community to another in a manner that is in many instances both confusing and inequitable. Targeting.Targeting of long-term care services to the most impaired individuals combines the facilitator functions of assessment and identification of needs and the gatekeeper functions of controlling and limiting access to services. Many analysts of the long-term care system have emphasized the importance of targeting services in order to control costs while providing essential services (80,118). While the concept of targeting represents a merging of the facilitator and gatekeeper functions, its implications require further definition. Decisions about the kind and amount of services that will be provided with government funding are a matter of public policy, and the concept of targeting does not in itself answer the difficult questions about resource allocation or resolve the ambivalence of government about its central concern in long-term care. Use of Computerized Information Systems. The complexity of agencies, services, funding mechanisms, and client needs at the community level suggests a possible application for computerbased information systems in long-term care. Computers are now being used in health and social service agencies for applications such as recordkeeping and program analysis, and some service providers have begun to use computerized information systems to aid in matching individual needs and available long-term care services (72). OTA has not assessed the efficacy of this ap-
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Ch. 7Technologies, Functional Impairment, and Long-Term Care l 229 preach, but it appears to provide an improved information base for long-term care decisionmaking. Concerns about the impact of this approach on client autonomy and confidentiality of client information should be resolved prior to implementation of these systems. Provision of a Comprehensive Range of LongTerm Care Services Through a Single Agency or Program-A third method for increasing the coordination of long-term care services and facilitating client access to services is provision of a comprehensive range of long-term care services by a single agency or program. The Veterans Administration is the largest and best known example of this approach, Other examples are social/ health maintenance organizations and agencies offering life care contracts. Recently hospitals have become more involved in the provision of long-term care services. Each of these agency types is discussed briefly with emphasis on its effectiveness in overcoming the fragmentation of long-term care services. The Veterans Administration OTA).The VA provides an extensive system of long-term care services including nursing home care, board and care, and home care. Adult day care, hospice, and respite care are also available in some areas (80). Institutional services are provided in VA Medical Centers and domiciliary care facilities, while home care services provided by the VA are most often available in areas near the VA Medical Centers (79). 25 Eligibility for VA services depends on a complex system of entitlements focused first on the presence of service-connected disability and secondly on measures of need and ability to pay (97). Although there has been little emphasis on targeting mechanisms, increased targeting of services is an option being considered in response to the increasing number of veterans eligible for VA services. The VA employs a large number of social ZSThe i~ also contracts with private nursing homes and cOmml.Inity home care agencies to provide services when VA facilities are full or when there are no VA facilities in a given geographical area. These contracted services are not relevant to this discussion of services actually provided by a single agency, but it is interesting to note that when the VA contracts with community agencies for services it cannot provide, it experiences many of the same problems in coordination of services that have been described in the beginning of this section. At present, there is ongoing discussion and debate within the VA about how the VA can best coordinate its services with non-tA services in the community. workers who are responsible for patient assessment and coordination of services within the VA system and for contracted services in the community (80). Although analysis of VA long-term care services is beyond the scope of this report, two points are relevant to the functioning of the VA as a delivery system. First, the cost of VA long-term care services such as nursing home and home care programs is higher than similar services provided by other government or private agencies (97). It is unclear whether these higher costs are related to the level of care needed by VA patients, the quality of care provided by the VA, or possible inefficiencies in the VA system of delivering services. Second, many elderly individuals who are eligible for long-term care through the VA choose instead to use non-VA services, relying on Medicare, private insurance, and personal funds to pay for these services (97). The reasons for this choice are not known, but some possibilities are: 1) lack of VA facilities near the individuals home and reluctance of the individual to leave his community; 2) the belief of some individuals that VA services are inferior to similar services provided by the private sector; and 3) a perception of the VA as a large, impersonal bureaucracy in which the preferences of the individual might be disregarded. Further analysis of these issues is needed to clarify the advantages and disadvantages of service delivery in the VA model. Social/Health Maintenance Organizations (S/HMOS). S/HMOs are agencies that provide a comprehensive range of long-term care services using management and reimbursement principles developed by HMOS (health maintenance organizations) to deal with the fragmentation of services in the community and avoid unnecessary hospitalization and nursing home care. Cost control is a major focus of the S/HMO. Clients pay a predetermined monthly rate and are thereby eligible for services they need including acute medical care, nursing home care, adult day care, home health care, housekeeping, and chore services. On Lok is a San Francisco agency that has been using HMO principles to provide a comprehensive range of long-term care services in the Chinatown-North Beach area since 1979 (101). On Loks own research indicates that their clients used less
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230 Technology arid Aging in America hospital care and less nursing home care than a comparison group and that measures of physical health and functional status indicated more improvement in the On Lok group than the comparison group (74). The On Lok cost per client per day in 1981 was $37.68, which includes all medical and social services but not the cost of housing, food, or other living expenses. Although accurate comparison is difficult, the Medicaid rate for skilled nursing home care in California at that time was $36.88 per day, which does not include costs of hospitalization, physicians services, or physical therapy. If the cost of these services is included, On Lok estimates that the true cost of care for patients in skilled nursing facilities would be comparable to On Loks cost plus the housing and living expenses of On Lok clients (101). While there is some question about the validity of the results of the On Lok research because of the comparison group used, there is considerable interest in the S/HMO approach. At present, several S/HMO sites are being developed by Brandeis University as part of a 3-year demonstration project funded by the Health Care Financing Administration. Evaluation of the results of this project is expected to provide information about the efficacy of the S/HMO approach for delivering services and improving client access to appropriate care (118). Some researchers believe that the S/HMOs will reduce the cost of long-term care by substituting home health and nonmedical home care services for hospital and nursing home care (30). The Federal Office of Management and Budget (OMB) disagrees and expects that S/HMOs will raise the cost of long-term care and create a precedent for providing nonmedical services that are not currently covered by Medicare and Medicaid (89). Life Care Communities-Life care communities are long-term care systems that provide a continuum of services for elderly residents, including homes or apartments for independent living, home care services, and infirmary orin many instancesnursing home care. Hospital care is usually not provided, but individuals are guaranteed that they can return to the life care community following hospitalization. There are about 275 life care communities in this country, providing housing and care for about 90,000 elderly people (6). Most life care communities are privately owned, and many are run by religious organizations. Elderly individuals are usually admitted while they are still able to function independently. Payment of the initial membership fee and a monthly fee guarantees the individual long-term care for the rest of his life. Because the membership fee and monthly fees are often very high, this type of long-term care has been used primarily by relatively wealthy individuals, but religiously based and nonprofit life care communities do admit some low and moderate income individuals. Sometimes Medicare or Medicaid reimbursement is available for home care or nursing home services provided in these communities. Life care communities allow the elderly individual to select a system of long-term care before he needs any services, thus increasing his sense of control over his future. In addition, the availability of a range of services within the same community eliminates the need to move to a completely new environment when services are needed, thereby avoiding the trauma that is often associated with moves. Despite these positive indications, reported financial and management problems of some life care communities have dampened enthusiasm for this long-term care option (59). Poor financial planning, often related to lack of accurate statistics about life expectancy for residents, has led to several bankruptcies (92), and a recent report has pointed out the need for improved actuarial planning (141). About one-third of States have laws governing life care communities, and other States are considering legislation (78). Legislation to protect the financial investment of residents and at the same time encourage the development of life care communities could make this option available to more elderly individuals. Many of the Nations largest nursing home chains have begun to diversify into housing and home care services for the elderly. In testimony before the Senate Subcommittee on Aging, July 14, 1983, Arnold Richman, chairman of Merid-
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Ch. 7Technologies, Functional Impairment, and Long-Term Care 231 ian Health Care, described his companys recent involvement in the provision of home care services including skilled nursing care, homemaker and chore services, and respite care. The company has developed housing for the elderly and is considering development of a retirement community with rental apartments for the elderly and a nursing center that would provide board and care services and skilled nursing care. Mr. Richman stated: While it is difficult for a proprietary provider of services to be a direct provider of life care services, we believe there is a significant untapped need for the rental concept which does not have associated with it the large entry or endowment fees typically associated with life care (90). Evaluation of the potential role of profit-making organizations in the development of life care communities to serve low and moderate income elderly is needed. Such an evaluation should focus on the cost of care and the effectiveness of this approach in reducing the fragmentation of longterm care services. Hospital-Based Service Delivery System s.With the advent of government-initiated cost control programs, particularly the Medicare cost-based reimbursement system (DRGs), hospitals have become more involved in developing and coordinating long-term care services. The cost control systems limit reimbursement to the hospital when the patient no longer needs acute care, but most hospitals are reluctant to discharge patients without appropriate plans for continuing care. In order to provide discharge options for their patients, some hospitals are developing or acquiring nursing homes, home care agencies, adult day care centers, and community outreach services, while others are establishing formal transfer agreements between the hospital and these long-term care agencies. Advantages of hospital-based service delivery systems are: 1) the prominence of hospitals in the community which makes them a well-known center for service delivery, and 2) the availability of physicians in the hospital to provide and supervise long-term care. Lack of physician involvement in nursing homes and home care agencies has been a major concern for many years, and affiliation of long-term care agencies with hospitals offers the possibility of alleviating this problem (22). Provision of long-term care services within the hospital system could also allow easier transitions for patients between acute and longterm care settings. In many communities, empty hospital beds are driving up the cost of hospital care. Affiliation with long-term care agencies provides a guaranteed source of patients for some of these hospitals. Other hospitals are using empty beds to provide long-term care in the hospital. This approach could lessen the need to build new nursing homes and decrease costs associated with empty hospital beds. In some rural areas, Medicare reimbursement is now allowed for these swing beds that can be used for acute or long-term care services depending on current need (22). 2 One disadvantage of hospital-based service delivery systems is that the hospital is a medical care facility, and hospital coordination of service delivery can result in overemphasis on medical care and lack of social or nonmedical services, The fact that reimbursement is more often available for medical care than for social services is an additional incentive for hospitals to provide primarily medical services. This tendency to medicalize the long-term care system is a problem because of the relatively high cost of medical care compared to social or nonmedical services and because in some instances nonmedical services are more appropriate for the patient. Further analysis of the impact of hospital-based service delivery systems on the kinds of services provided and the cost of care will be needed as this method of coordinating long-term care services is more widely used. Government Initiatives To Increase the Role of Individuals in Developing Their Own Long-Term Care Plans. -This option has thus far received very little attention for several reasons. First, longterm care is frequently seen as medical care, and planning is seen to require medical expertise. SecZeMedicare and Medicaid regulations and some State and ]OCal regulations prohibit hospital pro~tision of long-term care services and acquisition of long-term care facilities to avoid restraint on competition between local agencies.
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232 Technology and Aging in America end, individuals who need long-term care services are often treated as if they were so mentally and physically disabled that they cannot make long-term care plans for themselves. Third, there is a sense of crisis that surrounds long-term care decisionmaking and interferes with the deliberate consideration of individual preferences and alternatives for care. Finally, the complexity and fragmentation of long-term care services make it difficult for individuals to understand what alternatives are available. In fact, information reviewed in this chapter indicates that functional impairments rather than medical conditions are most apt to cause a need for long-term care services and that increasing proportions of individuals in each older age group need assistance with personal care and housekeeping services. To the extent that functional impairments and the resulting need for long-term care services can be anticipated by the elderly, it is possible that some individuals could plan for these services. Government initiatives to encourage and assist individuals to plan for their own long-term care could focus on public information programs to increase awareness of: l l l l functional impairments and their impact on the need for long-term care services, the potential for rehabilitation of the elderly and the role of assistive devices in maintaining and increasing independent functioning, the kinds of long-term care services that are available, and the importance of housing and living arrangements in postponing the need for more formal long-term care services. Clearly the development of a more rational and coordinated system of long-term care services would also help individuals to plan long-term care for themselves. One of the greatest fears of the elderly is becoming frail and dependent on others, Government initiatives to encourage elderly individuals to plan for themselves may help to alleviate this fear and assure them continuing control of their lives. Findings The need for long-term care is expected to increase dramatically in the future as a result of several factors: l l l growth in the number of elderly individuals, particularly the very old who frequently need long-term care services, decreasing age-specific mortality that results in larger numbers of elderly individuals living longer with chronic diseases and functional impairments, and changes in medical practice and reimbursement-mechanisms that result in limiting inpatient care and the length of hospital stays and promoting delivery of health care services in the home and the community. Increasing need for long-term care will place strain on families, existing agencies, and service delivery systems. Public and private expenditures for formal long-term care services which have grown rapidly in the past 20 years, will continue to rise. Technology has not been widely used in longterm care. Identification of technologies that are appropriate for this population requires a needs assessment, but this assessment is complicated because government programs that regulate and fund more than half of long-term care services in this country tend to define the kind of needs that are recognized, emphasizing medical and skilled nursing care and obscuring the need for other forms of care. Survey data collected from agencies serving Medicare and Medicaid patients reflect this influence. In contrast to this emphasis on medical and skilled nursing care, research indicates that longterm care services are most often needed as a result of functional impairment; that is, limitations in the individuals ability to function independ-
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Ch. 7Technologies, Functional Impairment, and Long-Term Care l 233 ently. Medical treatment can cure some of the conditions that cause functional impairment, but other conditions are not curable at present. Biomedical research has been focused primarily on conditions that cause death, but conditions that cause functional impairment are not necessarily the same as those that cause death. Research on conditions that cause functional impairment could result in effective treatments and decreased need for long-term care. In the absence of effective medical treatments, alternative approaches to maintaining independent functioning are needed, such as assessment technologies to identify functional impairment and assistive devices and rehabilitation techniques to compensate for functional impairment. Use of these technologies has been limited because of the focus on medical and skilled nursing care, and because physicians and other long-term care providers lack training in their use. Reimbursement for the use of assessment technologies is limited, and there is disagreement about the reliability and validity of existing assessment measures. Factors restricting the use of assistive devices include lack of information about available devices, the difficulty of selecting appropriate devices for individuals with multiple impairments, and negative attitudes of elderly individuals, their families, and many health care professionals about the rehabilitation potential of the elderly. Some elderly individuals have mental conditions that cause functional impairment and a need for long-term care. While it is known that about half of residents of nursing homes and board and care facilities have mental conditions that cause confusion, it is not known how many of these individuals are functionally impaired as a result of confusion, how many are functionally impaired as a result of other chronic conditions, and how many have both physical and mental conditions causing impairment. The development of devices and care techniques for confused patients has received little attention although families and formal long-term care providers often have great dif ficulty caring for these individuals. Because of the emphasis on medical and nursing care in the Federal programs that regulate and fund long-term care services, alternative care systems such as board and care facilities and personal care and supportive services in the home are often not available. Physically and mentally impaired patients who need 24-hour supervision and personal care services but not skilled nursing care are often admitted to nursing homes although they might be cared for in less restrictive and less costly board and care facilities. Similarly, individuals who need personal care and supportive services at home may not receive the care they need or may receive health care services they do not need because of Medicare and Medicaid funding regulations. Negative attitudes about the concept of custodial care and fears about the cost of providing nonmedical long-term care services for the functionally impaired elderly also limit the availability of these services. Most long-term care services are labor-intensive, and formal and informal providers receive little training in the use of devices and techniques to facilitate caregiving. Increased development and use of these technologies could lessen the burden of caregiving, allowing some families to keep elderly relatives at home longer and decreasing staff turnover in long-term care facilities. Few medical care technologies have been used in long-term care facilities or in the home. Recently, as a result of the implementation of the Medicare prospective reimbursement system and increased emphasis on the provision of health care services at home, medical care technologies that have been available only in hospitals are being used more often in the home. This trend is expected to grow, and demand for sophisticated medical and nursing care technologies in nursing homes is also expected to grow. The increased use of these technologies outside the hospital is dependent on the availability of funding and skilled health care personnel trained to use these technologies and to teach the patient and the family to use them. Long-term care services are provided by nursing homes, board and care facilities, and home care agencies. In some communities, adult day care facilities, hospice programs, and congregate housing facilities also provide services. Little information is available about differences between agencies in the services they provide and the kinds of individuals they serve, and it often appears that most agencies provide a wide range
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234 l Technology and Aging in America of services to a variety of patients with very different needs. Increasing the use of technology in these agencies would be difficult and expensive because so many different technologies would be required to meet the varied needs of patients served by each agency. An alternative is to classify patients according to need and to provide a unique set of technologies and care systems in each agency. The feasibility of this alternative depends on whether patients can be realistically grouped according to need and whether available assessment technologies can accurately classify patients in this way. When patient needs change frequently, the negative effect of moving can outweigh the positive effect of appropriate technologies in the new setting. These issues Research require further evaluation. priorities Lack of coordination among the Federal programs that regulate and fund long-term care services contributes to the fragmentation of services at the community level, making it difficult for the elderly, their families, and health care professionals to arrange appropriate services and increasing the sense of crisis that surrounds longterm care decisionmaking. Efforts to improve service delivery have included techniques for coordinating agency services at the community level, case management systems, and organizational approaches that provide a range of services through a single local agency. Development of a more coordinated system of services could enhance the ability of some elderly individuals to plan effectively for their own long-term care. Research priorities related to the development, l utilization, and evaluation of technologies to meet the needs of the long-term care population include: s l l l identification of the primary causes of funcl tional impairment and biomedical research to find cures or treatments that alleviate the functional impairment; development of assistive devices and rehal bilitation techniques for elderly individuals, particularly those with multiple impairments; evaluation of the relationship between mental confusion and functional impairment and the impact of mental confusion on the need for long-term care; identification of assistive devices and rehabilitation techniques that are effective with confused individuals; assessment of devices and techniques to facilitate caregiving; evaluation of the reliability and validity of available assessment measures in classifying patients according to service and technology needs; and comparison of the cost and quality of care effects of providing a variety of technologies in each long-term care agency v. moving patients to settings that provide a unique set of services and technologies to meet specific needs.
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Ch. 7Technologies, Functional Impairment, and Long-Term Care l 235 Issues and options Use of assessment measures Issue I : Should Congress encourage the use of comprehensive assessment technologies? Options: 1.1: Congress could maintain current levels of support for the use of comprehensive assessment measures in demonstration projects. 1.2: Congress could increase funding for evaluation and consensus development on effective assessment measures. 1.3: Congress could increase funding for training health care professionals and other long-term care providers in the use of comprehensive assessment technologies. 1 .4: Congress could mandate reimbursement through Medicare and Medicaid for physicians and other long-term care providers for comprehensive assessment. 1.5: Congress could mandate reimbursement for comprehensive assessment provided in Geriatric Assessment Centers. 1.6: Congress could make eligibility for publicly funded long-term care services dependent on the results of a comprehensive functional assessment measure. Comprehensive evaluation of the physical, mental, and social functioning of the impaired elderly individual is important for identifying medical care needs, functional impairments, and appropriate technologies and long-term services. Federal initiatives to provide training and reimbursement for health care professionals and other long-term care providers in the use of available assessment measures can be expected to increase utilization. Mandated use of comprehensive assessment measures to determine eligibility for federally funded long-term care services would have a much greater effect, ultimately leading to increased awareness of the multiple factors involved in the need for long-term care and the variety of technologies and services that are appropriate for this population. Functional impairment Issue 2: Should Congress mandate funding for long-term care services based on functional impairment? Options: Z I : Congress could maintain current emphasis on eligibility for services based on need for medical and skilled nursing care. 2.2: Congress could expand existing programs to include eligibility for long-term care services on the basis of functional impairment. 2.3: Congress could create a new program to fund long-term care services for functionally impaired individuals who do not need continuous medical or skilled nursing care. Research has demonstrated the importance of functional impairments in causing the need for long-term care services, but, as a result of the emphasis in Federal funding programs on medical and skilled nursing care, some elderly individuals with functional impairments are not eligible for the services they need. Providing reimbursement for services based on functional impairment would increase the number of eligible individuals and probably increase overall costs. The availability of funding for nonmedical services could, however, encourage the development of alternative care systems such as board and care facilities and personal care and supportive services in the home that are significantly less costly than medical and skilled nursing care. These alternative care systems could emphasize the use of technologies for caregivers and environmental design technologies that limit the impact of functional impairments. Since it is not known how many nursing home residents and home care clients need skilled nursing care and how many need only personaI care, supportive services, and supervision, no reliable estimate can be made of the number of individuals who could be cared for with lower cost, alternative services.
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236 l Technology and Aging in America Rehabilitation technologies Issue 3: Should Congress implement policies to increase the use of assistive devices? Options: 3.1: Congress could maintain current levels of support for the use of assistive devices. 3.2: Congress could increase funding for assistive devices through existing programs, extending coverage to devices that support independent functioning, but are not currently considered medically necessary, such as glasses, hearing aids, dentures, communication devices, lifeline devices, and devices to alter the home to compensate for functional impairments. 3.3: Congress could create a new program to supply assistive devices, modeled after programs currently in effect in Sweden. 3.4: Congress could fund a demonstration project to evaluate the efficacy of Aids Centers in providing and repairing assistive devices. 3.5: Congress Could provide support for improve the matching of individuals and devices, such as: 3.6: a. b c. d. The use of assessment technologies to identify needs and appropriate devices. Training to increase understanding of the use of assistive devices among long-term care providers, including physicians, nurses, social workers, and staff at senior centers and nutrition sites. This could encompass training about the kinds of devices that are available, the effectiveness of devices in mmpensatirg for functional impairment, and appropriate referrals for patients who need devices. Training to increase awareness of the special needs of the elderly among professionals already involved in providing assistive devices, such as physical therapists and occupational therapists. Increased emphasis on services for the elderly through State rehabilitation agencies. (These agencies receive 80 percent Federal funding through the Rehabilitation Act of 1973.) Congress could fund a public education program targeted to the elderly and their famiZies on the nature of functional impairments and use of assistive devices in compensating for impairment, Such a program could focus on countering negative attitudes about the use of assistive devices. Issue 4: Options: Should Congress support initiatives to increase the use of rehabilitation services for the functionally impaired elderly? 4. 1: Congress could maintain current levels of support for rehabilitation services for the elderly. (It is expected that rehabilitation services will be provided more extensively because these services are exempt from Medicare DRGs.) 4.2: Congress could increase support for rehabilitation 4.3; 4.4: 4.6: services through Medicare by eliminating restrictions on reimbursement for services that maintain functioning and limitations on the frequency of reimbursable services. Congress could increase support for rehabilitation services through Medicaid by fiscal policies that encourage States to reimburse prowders at higher rates. Congress could mandate the provision of rehabilitation services in nursing homes as a condition for Medicare certification and encourage States to impose the same requirement for certification under Medicaid. Congress could increase funding for training of rehabilitation professionals and other long-term care providers, including: a. training to counter negative attitudes about the rehabilitation potential of the elderly, b. training in the use of assessment measures to identify the need for rehabilitation servicies, and c. training in techniques for rehabilitation of the functionally impaired elderly. 4.7: Congress could fund a public education program targeted to the elderly and their families on the nature of functional impairment and the potential of rehabilitation services for improving functional capacity and compensating for impairments. The use of rehabilitation technologies to compensate for functional impairment is limited by negative attitudes of the elderly, their families, and health care providers about the rehabilitation potential of those over 65, lack of training for providers, and limitations on reimbursement for services to maintain functioning and devices to compensate for functional impairment. Federal initiatives to increase training for providers and reimbursement for a wide range of rehabilitation
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Ch. 7Technologies, Functional Impairment, and Long-Term Care l 237 technologies will increase use, resulting in improved functioning for many elderly individuals and decreased need for long-term care services. Demonstration of the effectiveness of these technologies can be expected to decrease negative attitudes that now restrict use. service delivery systems Issue 5: Should Congress support initiatives to improve services delivery? Options: 5;1: Congress could maintain current support for coordination of services at the community level including funding for Area Agencies on Aging and Medicaid waivers that allow case management as a reimbursable service. 5:2: Congress could create a federally funded case management system modeled after the Channeling Demonstration Program. 5.3: Congress could provide more flexible funding and other financial incentives to encourage the development and use of a comprehensive range of longterm care services provided by single agencies such as hospital and nursing home based service systems, WHMOS, and life care communities. 5.4: Congress could consolidate Federal funding for long-term care services into a single program, combining funding from Medicare, Medicaid, the Title XX Block Grant, Title III of the Older Americans Act, and the VA. The lack of coordination of Federal programs that fund long-term care is an important cause of fragmentation of services at the community level, but combining these programs into a single Federal long-term care program (option 5.4) would require major changes in legislation, regulations, and agency structures at the Federal, State, and local level. In the absense of these substantial changes, Federal support for systems to coordinate services at the community level can help to decrease fragmentation and improve access to appropriate services. Such systems include local provider groups, information and referral systems, case management, hospital or nursing home based service systems, S/HMOs, and life care communities. Technical memorandum: Federal programs funding long-term care services Medicare Medicare, authorized by Title XVIII of the Social Security Act, pays for acute care services (hospitalization and physicians services, etc.) and some long-term care services for elderly and disabled beneficiaries. Almost all elderly persons are covered by Medicare. NursingHome: Medicare pays for up to 100 days of skilled nursing care within each benefit period with substantial copayments after the first 20 days. ( A benefit period begins the day an individual is admitted to a hospital or nursing home and ends when he or she has been out of the hospital or nursing home for 60 consecutive days [25]). Custodial care is not covered. In 1980, Medicare paid $337 million for skilled nursing care for elderly individuals. This represented less than 1 percent of total Medicare expenditures and about 2 percent of all spending for nursing home care (126). Board and Care Facilities: Not covered. Home Care: Medicare funds skilled nursing care, physical therapy, speech therapy, occupational therapy, medical social services, and home health aide visits with the authorization of a physician.z Under Medicare regulations home health aides can provide personal care but can only perform homemaker services such as cleaning and changing beds when these services can be shown to prevent or postpone institutionalization. No chore services are provided. In 1978, a majority of the home care visits funded by Medicare were skilled nursing visits (55.7 percent), while 30.7 z>A]] home cam se~ces funded by Medicare must be authorized by a ph.vsician, and the physician is supposed to determine the extent and nature of all services provided. Nevertheless, a recent GAO study found that home care agencies were generally planning the services and most physicians were not aware of the services they had authorizti. In fact, 50 percent of the physicians interviewed wem not seeing the patients for whom they had authorized home care services, and very few physicians were aware of the cost of these services (1 16).
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238 l Technology and Aging in America percent were home health aide visits, and 10 percent were physical therapy visits (116). Medicare regulations specify that home care services can be covered only when the recipient is homebound; it has been very difficult, however, to define homebound, and services have been funded for some elderly individuals who are able to leave home (116). Medicare outlays for home care services increased from $287 million in fiscal year 1976 to $964 million in fiscal year 1981 (116), and the number of Medicare home care visits has doubled in the past 10 years; nevertheless, funding for home care services accounts for only about z percent of Medicare expenditures (118). There is no patient deductible for home care services under Medicare, so these services are free to the patient (116). Adult Day Care: Medicare pays for skilled nursing, physical therapy, and occupational therapy provided in the adult day care setting, but does not cover adult day care as such. Hospice: As of October 1, 1983, Medicare funds hospice care for terminally ill beneficiaries with a life expectancy of 6 months or less. Reimbursement has been limited to $46.25 per day per patient, but legislation to raise this amount was approved on November 9, 1984 (P.L. 98-617). Respite Care: Medicare home health care services may be used by some families for respite care (116). Congregate Housing: Not covered. Medicaid Medicaid is a Federal-State program authorized by Title XIX of the Social Security Act. It pays for acute and long-term care services for low-income individuals, including the elderly. Because regulations governing Medicaid programs are determined by each State, within the Federal guidelines, there are significant variations between States in eligibility requirements and available services, States can limit services to individuals with incomes below a set level or they can provide services for the medically needy, i.e., individuals whose income is below the set level only after their medical expenses have been deducted. Nursing Home: The Federal Medicaid program defines two types of covered nursing home care: skilled care, provided in a skilled nursing facility (SNF), includes services that are needed on a daily basis, must be provided in an institution, and require the skills of professional or technical personnel; intermediate care, provided in an intermediate care facility (ICF), is health-related care for individuals who require services that are above the level of room and board and must be provided in an institution. In the SNF, a professional nurse must be on duty 24 hours a day. In an ICF, a professional nurse must be on duty only during the day shift (25). Although Federal regulations are quite specific, States vary greatly in their use of these two levels of care. Some States, like California and Connecticut, consider almost all the care they provide skilled care, while others, like Iowa and Oklahoma, provide almost all intermediate care. Since it is unlikely that the types of care needed by nursing home residents varies greatly between States, variation in the use of the SNF and ICF categories probably results from differences in State policies that implement the Federal Medicaid regulations (25). In fiscal year 1980, Medicaid paid $7.9 billion for nursing home care. This represents more than onethird of all Medicaid expenditures and about 45 percent of all spending for nursing home care (119). The Federal Government pays from 50 to 78 percent of State Medicaid costs for services and up to 50 percent of administrative costs. In recent years, Federal payments to the States have been capped at lower levels than previously (e.g., 96 percent of fiscal year 1982 dollars were available in 1983). Board and Care Facilities: Not covered. Home Care: Under Federal Medicaid guidelines, States are required to provide skilled nursing care and home health aide services, while other services such as personal care services, physical therapy, speech therapy, and occupational therapy are optional (25). Currently 18 States are covering personal care services including bathing, dressing, feeding, and some housekeeping services if related to a medical need (25). Services must by ordered by a physician, and home health aide services and personal care services must by supervised by a licensed nurse (138), Medicaid expenditures for home care have been relatively low (1.4 percent of total Medicaid spending in fiscal year 1980) (25), and States vary widely in the extent to which Medicaid is used to fund home care services. In fiscal year 1980 New York accounted for 40 percent of all recipients nationwide, almost half of all Medicaid home care expenditures, and 90 percent of Medicaid expenditures for personal care (25). Medicaid payments for home care services are generally much lower than Medicare payments, and it is likely that the lower Medicaid reimbursement rates discourage providers from serving Medicaid recipients. Medicaid 2176 Waiver Program: A 1981 amendment to the Social Security Act waived some of the requirements for Medicaid-funded home care services, allowing States to set up demonstration projects to offer home and community-based services not previously paid for by Medicaid. Services provided through the 2176 waiver program could be offered on less than
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Ch. 7Technologies, Functional Impairment, and Long-Term Care 239 a statewide basis, so that projects could be set up in certain geographical areas and targeted to specific groups of recipients. Waiver projects must be approved by the Secretary of Health and Human Services, and total spending must be no higher than without the waiver project. Medicaid waiver applications approved by mid-1983 include 26 programs for the elderly, and many of these programs include home care services: 16 programs include homemaker services, 1 1 include personal care, 7 include home health care, and 5 include chore services (138). Adult Day Care: Adult day care is an optional Medicaid service, and as of fiscal year 1984, eight States provided Medicaid reimbursement for adult day care. Several States provide adult day care through the 2176 waiver program (25,127). Hospice: Hospice care is not currently funded by Medicaid, but New York State has requested an administrative decision by the Health Care Financing Administration to make reimbursement available under existing legislation. Respite Care: Home care services covered by Medicaid are used by some families for respite care. Congregate Housing: Not covered. Title XX Title XX of the Social Security Act was converted to Title XX Block Grants to States for Social Services in 1981 (118). Title XX grants are used by States primarily for social services for elderly and nonelderly individuals, and there is considerable variation between States in services provided. Nursing Home: Not provided. Board and Care Facilities: Some States provide limited funding for geriatric foster care with title XX funds (25). Home Care: Home care services provided in some States with title XX funds include homemaker, chore services, and homedelivered meals, but GAO has estimated that in the States they studied, less than 13 percent of title XX funds were spent for these home care services (25). It is difficult to specify what percentage of title XX home care services were used by elderly persons, but one author has estimated that in fiscal year 1980 between $723 million and $1.593 billion in title XX funds were spent on long-term care services for the elderly. States vary widely in the use of these funds. For example, it is estimated that California spent about 40 percent of all title XX funds for long-term care (25). Adult Day Care: Although more than 95 percent of publicly funded adult day care was paid for with title XX funds in fiscal year 1980, and almost all States provided some adult day care with title XX funds, total title XX expenditures for adult day care were relatively limited. It is estimated that less than 3 percent of all title XX expenditures for long-term care for the elderly were spent on adult day care (25). Hospice: Not covered. Respite Care: No information available, Congregate Housing: Housing subsidies are not provided, but services for residents on congregate housing facilities are provided with Title XX funds in some jurisdictions. Examples include homemaker and transportation services. Title III Title III of the Older Americans Act provides funds for a variety of services for the elderly, including homedelivered and congregate meals, transportation, homemaker, and home health aide services. The Administration on Aging allocates title 111 funds to States primarily on the basis of the proportion of the States population aged 60 and over compared with the proportion of that age group in the national population (25). Nursing Home: Not covered. Board and Care Facilities: Not covered. Home Care: Home care services funded through title 111 include home-delivered meals, shopping and escort services, telephone reassurance, homemaker, home health aide, and residential repair (25). The GAO estimates that $43 million of title III funds were spent on home care services for the elderly in fiscal year 1980 (118). Hospice: Not covered. Respite Care: Home care services provided with title 111 funds are used by some families for respite care. In addition, some localities provide specific respite care services with title III funds. No accurate figures are available on spending for respite care nationally. Congregate Housing: Housing subsidies are not provided, but services for residents of congregate housing facilities are provided with title 111 funds in some jurisdictions. Examples include congregate meals and recreation services. Supplemental Security Income (SSI) SS1 is the Federal program enacted in 1972 to provide minimum monthly payments to aged, disabled, and blind individuals who have incomes below the minimum standard. Since SSI is a cash benefit, it can be used by recipients to pay for long-term care services, but low benefit levels limit the kinds of services that can be purchased.
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240 l Technology and Aging in America Nursing Home: Not covered. When SS1 recipients are admitted to a nursing home, their SS1 grant is reduced to a maximum of $25; if they have other income, the SS1 benefit is reduced to zero. Board and Care Facilities: Many residents of board and care facilities receive SS1 payments and use this income to pay for their care. In addition, States are allowed to supplement the Federal minimum SS1 benefits, and by 1983, 34 States and the District of Columbia provided supplements specifically for persons living in board and care facilities (52,131), Home Care: Not covered. Adult Day Care: Not covered. Hospice: Not covered. Respite Care: Not covered. Congregate Housing: Not covered. Veterans Administration (VA) The VA provides a wide range of long-term care services for eligible veterans. The complex eligibility criteria for services are not discussed here. Nursing Home: In fiscal year 1982, about 15,000 veterans were cared for in VA nursing homes with an average daily census of about 8,400 (132a). About 62 percent of these individuals were 65 or over (80). In addition, about 31,500 veterans were paid for in nonChapter 7 references VA community nursing homes with an average daily census of about 9 ) 500 (132a). About 56 percent of these individuals were over 65 (80). Board and Care Facilities: The VA operates 16 large board and care facilities with an average daily census of about 7,000. In addition, the VA places veterans in smaller board and care homes. In fiscal year 1982, approximately 13,500 veterans were living in about 3,00 supervised board and care homes: approximately 30 percent were over 65 (132a). (State veterans homes also provide domiciliary care and some nursing home care.) Home Care: The VA provides home care services to homebound veterans through 30 VA medical centers. In fiscal year 1983 it was estimated that medical, nursing, social, and rehabilitation services would be provided for about 5,600 veterans. Veterans who do not live near one of the 30 medical centers do not have access to VA-funded home care services. Adult Day Care: Recent legislation authorizes VA provision of adult day care through VA facilities or through contracts with non-VA providers. Hospice: The VA operates one hospice program in Los Angeles (80). Respite: VA home care services are used by some families for respite care. Congregate Housing: Not covered. 1. Aaronson, L., Aduh Day Care: A Developing Con7. Bartels, E. C., Rehabilitation Engineering Through cept, The Journal of Gerontological Social Work 5(3):35-47, spring 1983. 2. Allan, C. B., The Older Consumer: The Time Is Now, National Journal, Nov. 24, 1979, pp. 1998-2003. 3. Association of American Medical Colleges, The 8. Long-Term Care Gerontolo# Center Program: First Annual Yearbook, 1982. 4. Baker, G. T., Griffith, B. C., Carmone, F., and 9. Krauser, C. K., Report on Products and Services To Enhance the Independence of the Elderly, University of Maryland Center on Aging, October 10. 1982. 5. Baker, G. T., and Krauser, C. K., A CataZogue of Products and Services To Enhance the Independence of the Elderly (Philadelphia, PA: Drexel University, August 1982). 6. Ball, E. M., Statement before the Senate Special 11. Marketing: Getting From Here to There, Technolo~ for Independent Living, V. W. Stern and M. R. Redden (eds.) (Washington, DC: American Association for the Advancement of Science, 1982). Bell, T. E., Technologies for the Handicapped and the Aged, National Aeronautics and Space Administration, July 1979. Benedict, R. C., and Ganikos, M. L., Coming to Terms With Ageism in Rehabilitation, J. Rehab. 47(4):10-18, 1981. Bennett, R., Gruen, G., and Tepper, L., Interactions Among Citizens, Providers and Technologies in Various Settings, paper prepared for the Conference on the Impact of Technology on LongTerm Care, Feb. 16-18, 1983, revised Sept. 20, 1983. Berg, R. L., Prevention: Can We Reduce the DeCommittee on Aging, May 25, 1983. maid for Long-Term Care? paper prepared for
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Ch. 7Technologies, Functional Impairment, and Long-Term Care l 241 the Conference on the Impact of Technology on Long-Term Care, Feb. 16-18, 1983. 12. Berkman, L. F., The Assessment of Social Networks and Social Support in the Elderly, J. Am. Geriat. Soc, 31(12):743-749, 1983. 13. Bernstein, J., Who LeavesWho Stays: Residency Policy in Housing for the Elderly, The Gerontologist 22(3):305-313, 1982. 14. Blake, R., Disabled Older Persons: A Demographic Analysis, J. Rehab. 47(4):19-27, 1981. 15. Brody, E. M., and Kleban, M. H., Day-to-Day Mental and Physical Health Symptoms of Older People: A Report on Health Logs, The Gerontologist 23(1):75-85, February 1983. 16. Brody, E. M., Johnsen, P. T., Fulcomer, M. C., and Lang, A. M., Womens Changing Roles and Help to Elderly Parents: Attitudes of Three Generations of Women, J. Geronto]. 38(5):597-607, 1983. 17. 18. 19. 20. 21 22. 23. 24< Brody, J., statement to the National Institutes of Health Conference on Evaluating the Elderly Patient: The Case for Assessment Technology, June 29, 1983. Brody, S., Poulshock, W., and Masciocchio, C., The Family Caring Unit: A Major Consideration in the Long-Term Support System, The Gerontologist 18(6):556-561, 1978. Bruer, J. M., A Handbook of Assistive Devices for the Handicapped Elderly (New York: Haworth Press, 1982). Cair], R. E., Pfeiffer, E., Keller, D. M., Burke, H., and Samis, H. V., An Evaluation of the Reliability and Validity of the Functional Assessment Inventory, J. Am. Geriat. Soc. 31(10):607-612, 1983. Callahan, J., (Delivery of Services to Persons With Long-Term Care Needs, Policy Options jn Long Term Care, Meltzer, Farrow, and Richman (eds.) (Chicago: University of Chicago Press, 1981). Campion, E. W., Bang, A., and May, M. I., Why Acute Hospitals Must Undertake Long-Term Care, N. Engl. J. Med. 308(2):71-75, 1983. Cluff, L. E., Problems of the Health-Impaired Elderly: A Foundations Experience in Geriatrics, J. Am. Geriat. Soc. 31(11):665-672, November 1983. Cohen, D., HegartV, J., and Eisdorfer, C., The Desk Directory-of Social Resources: A Physicians Reference Guide to Social and Community Services for the Aged, J. Am. Gerjat. Soc. 31(6):338341, 1983. 25. Cohen, J., Public Programs Financing Long-Term Care, The Urban Institute, Washington, DC, draft, revised January 1983. 26. Cook, A. M., Delivery of Assistive Devices Through a Client-Oriented Approach, Technolo~ for Independent Living, V. W. Stern and M. R. Redden (eds.) (Washington, DC: American Association for the Advancement of Science, 1982). 27. Corcoran, Paul J., Independent Living in Berkeley and the Bay Area of California, Technology for Independent Uvjng, V. W. Stern and M. R. Redden (eds.) (Washington DC: American Association for the Advancement of Science, 1982). 28. Cornbleth, T., Effects of a Protected Hospital Ward Area on Wandering and Nonwandering Geriatric Patients,J. Gerontol., 32:573-577, 1977. 29. Davis, K., Health Implications of Aging in America, paper prepared for the Conference on the Impact of Technology on Long-Term Care, Feb. 16-18, 1983. 30. Diamond, L. M., Gruenberg, L., and Morris, R. L., Elder Care for the 1980s: Health and Social Service in One Prepaid Health Maintenance System, The Gerontologist 23(2):148-154, 1983. 31. Dittmar, N, D., and Smith, G. P., Evaluation of Board and Care Homes: Summary of Survey Procedures and Findings, Denver Research Institute, University of Denver, Feb. 22, 1983. 32. Englehardt, K. G., Testimony before the Select 33 34. 35. 36. 37. 38. Committee on Aging, U.S. House of Representatives, May 22, 1984. Foulds, R., Rehabilitation Devices: Can We Understand the Costs, Technology for Independent Living, V. W. Stern and M. R. Redden (eds.) (Washington, DC: American Association for the Advancement of Science, 1982). Freiberger, H., Sherrick, C. E., and Scadden, L., Report of the Workshop on Sensoruy Deficits and Sensory Ajds (San Francisco: Smith-Kettlewell Institute of Visual Sciences, 1977). Frieden, L., Delivery Systems Abroad, Technology for Independent Living, V. W. Stern and M. R. Redden (eds.) (Washington, DC: American Association for the Advancement of Science, 1982). Gallagher, D. E., and Thompson, L. W., Effectiveness of Psychotherapy for Both Endogenous and Nonendogenous Depression in Older Adult Outpatients, J. Geronto]. 38(6):707-712, 1983. Hartford, M., and Parsons, R., Groups With Relatives of Dependent older Adults, The Geronto]ogst 22(3):394-398, 1982. Harvard Center for Community Health and Med ical Care, An Approach to the Assessment of Long-Term Care, final report and summary to the National Center for Health Services Research, Boston, MA, 1977. 39. Heller, A. J., Diagnostic Priorities for Care Requirement, paper presented by D. Bheemaswarroop, at the meeting of the Gerontological Society of America, october 1982.
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242 l Technology and Aging in America 40. Institute of Electrical and Electronics Engineers, Profile, The Institute 16, November 1983. 41. Institute of Medicine, A Policy StatementThe 4 2 43. Elderly and Functional Dependency (Washington, DC: National Academy of Sciences, June 1977). Jean, G. L., Brovender, S. R., Duclos, T,, and Freeland, R., Geriatric Nurse Practitioners in the Nursing Home) paper presented at the Annual Conference of the Association of American Homes for the Aging, Boston, MA, Nov. 12, 1980. 54. LaBuda, D., American Association of Retired Persons, Washington, DC, personal communication, Apr. 13, 1984. 55. LaRocca, J., and Turen, J., The Application of Technological Developments to Physically Dis abkd People (Washington, DC: The Urban Institute, 1978). 56. Leifer, L., High Technology, by Design, for the Handicapped, Technolo~ for Independent Living, V. W. Stern and M. R. Redden (eds.) (Washington, DC: American Association for the AdKane, R. A., and Kane, R. L., Assessing the Elderly: vancement of Science, 1982). A Practical Guide to Measurement (Lexington, MA: Lexington Books, D. C. Heath, 1981). 44. Kane, R. L., Acute and Long-Term Care: Decisions and Decision-Makers, paper prepared for the Conference on the Impact of Technology on Long-Term Care, Feb. 16-18, 1983. 45. Kane, R. L., Statement to the National Institutes of Health Conference on Evaluating the Elderly Patient: The Case for Assessment Technology, June 30, 1983. 46. Kane, R. L., Kane, R. A., and Arnold, S. B., Pre4 7 48. 49. 50. 51. 52. 53. vention in the Elderly: Risk Factors, paper prepared for the Conference on Health Promotion and Disease Prevention for Children and the Elderly, Foundation for Health Services Research, Sept. 16, 1983. Kane, R. L., M~tthias, R., and Sampson, S., The Risk of Placement in a Nursing Home After Acute Hospitalization, Medical Care 21(11):1055-1061, 1983. Kane, R. L., Riegler, S., Bell, R., Potter, R., and Koshland, G. Predicting the Course of Nursing Home Patients: A Progress Report, prepared for National Center for Health Services Research (Santa Monica, CA: The Rand Corp., 1982). Kane, R. L., Wales, J., Bernstein, L., Leibowitz, A., and Kaplan, S., A Randomised Controlled Trial of Hospice Care, Lancet 1(8382):890-894, 1984. Katz, S., Branch, L. G., Branson, M. H., Papsidero, J. A., et a]., Active Life Expectancy, N. Engl. J. Med. 309(20):1218-1224, 1983. Keeler, E. B., Kane, R. L., and Solomon, D. H., Shortand Long-Term Residents of Nursing Homes, Medical Care 19(3):363-369, 1981. Kochhar, S,, Recipients in Domiciliary Care Facilities: Federally Administered Optional Supplementation, March 1976, Social Security Bu]]etin, December 1977, pp. 17-28. Kutza, E. A., Overview Paper, prepared for the Office of Technology Assessment, unpublished, November 1983. 57. Leshowitz, B., The Infrared Hearing Aid, Technolo~ for Independent Living, V. W. Stern and M. R. Redden (eds.) (Washington, DC: American Association for the Advancement of Science, 1982). 58. Libow, L. S., Geriatric Medicine in the Nursing Home: A Mechanism for Mutual Excellence, The Gerontologist 22(2):134-141, 1982. 59, Life~are Communities: Promises and Problems, Hearing before the Senate Special Committee on Aging, Washington, DC, May 25, 1983. 60. Loeb, M. B., and Austin, C. D., Toward the Development of a Technology of Caring) presented to the Western Gerontological Society Meeting, Apr. 18, 1983. 61. Loebel, J, R., and Eisdorfer, C., Psychological and Psychiatric Factors in the Rehabilitation of the Elderly, Rehabilitation in the Aging, T, F. Williams (cd.) (New York: Raven Press, 1984). 62. Liu, K., and Manton, K., The Characteristics and Utilization Pattern of an Admission Cohort of Nursing Home Patients, The Gerontologist 23(1):92-98, 1983. 63. Liu, K., and Manton K., The Characteristics and 64. 65. 66. 67. 68. Utilization Pattern of an Admission Cohort of Nursing Home Patients (II), The Gerontologist 24(1):70-76, 1984. Liu, K., and Mossey, J., The Role of Payment Source in Differentiating Nursing Home Residents, Services, and Payments) Health Care Financing Review, summer 1980, pp. 51-61. Liu, K., and Palesch, Y., The Nursing Home Population: Different Perspectives and Implications for Policy, Health Care Financing Review 19(3):15-23, 1981. Manton, K. G., Woodbury, M. A., and Liu, K., Life Table Methods for Assessing the Dynamics of U.S. Nursing Home Utilization: 1976-77) J. Gerontol. 39(1):79-87, 1984. Mezey, M., letter to the Office of Technology Assessment, Aug. 4, 1983. Mezey, M., and Lynaugh, J., Facts and Issues For
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Ch. 7Technologies, Functional Impairment, and Long-Term Care c 243 69 Nursing in Long-Term Care, paper prepared for the National Commission on Nursing, September 1982. Mittlemann, M., and Settele, J., Insurance Reimbursement Mechanisms for Rehabilitation Equipment and Environmental Modifications) Archives of Physical Medicine and Rehabilitation 63:279283, June 1982. 70. Monsour, N., and Robb, S. S., Wandering Behavior in old Age: A Psychosocial Study, Social Work, September 1982, pp. 411-415. 71. Myers, J., editorial, .J. Rehab. 47(4):8, 1981. 72. iVASW News, Social Workers Harnessing Technology, January 1984, p. 3. 73. Nevins, B., Gaps in the Models) Technology for Independent Living, V. W. Stern and M. R. Redden (eds,) (Washington, DC: American Association for the Advancement of Science, 1982). 74. On Loks CCODA: A Cost Competitive Model of Community -l?ased Long-Term Care, February 1983. 75. Ouslander, J. G., Kane, R. L., and Abrass, 1. B., Urinary Incontinence in Elderly Nursing Home Patients, J.A. M.A. 248(10):1194-1198, Sept. 10, 1982. 76. Parry, F., (Physical Rehabilitation of the Old, old Patient, .J. Am. Geriat. Soc. 31[8):482-484, August 1983. 77. Phillips, B., statement to the National Institutes of Health Conference on Evaluating the Elderly Patient: The Case for Assessment Technology, June 30, 1983. 78. Pies, H. E., statement to the Conference on Long79 80 81 82 83 Term Care Financing and Delivery Systems: Exploring Some Alternative s, Washington DC, Jan. 24, 1984. Piktialis, D. S., and Mac Adam, M., (Experiments and Demonstrations in Sharing and Coordination, paper prepared for a conference on VA/ Community Resources for the older Veteran, 1983. Piktialis, D. S., and Mac Adam, M., Mechanisms of Access and Coordination, paper prepared for a conference on VA/Community Resources for the Older Veteran, 1983. Pollak, B., The Financing of Long-Term Care: Principles and Practices, paper prepared for the Conference on the Impact of Technology on Long-Term Care, Feb. 16-18, 1983. Rabins, P. V., Mace, N. L., and Lucas, M. J., The Impact of Dementia on the Family, J. A.M.A. 248(3):333-335, 1982. Radocy, R., Strategies for Developing and Marketing Products for Special Populations, Tech84 85. 86. 87. 88 89. 90. 91. 91a. 92. 93. 94. 95. 96. 97. no]ogy for Independent Living, V. W. Stern and M. R. Redden (eds.) (Washington, DC: American Association for the Advancement of Science, 1982). Rameizl, P., Statement to the National Institutes of Health Conference on Evaluating the Elderly Patient: The Case for Assessment Technology, June 30, 1983. Rathbone-McCuan, E., Lohn, H,, Levenson, J., and Husu, J., Cost-Effectiveness Evaluation of the Levindale Adult Day Treatment Center (Baltimore: The Levindale Geriatric Research Center, 1975). Redford, L., Statewide Data Base on the Elderly, University of Kansas, Long-Term Care Gerontology Center, unpublished data, 1984. Rehabilitation Research and Training Center on Aging, Summary of Grant Status, Rancho Los Amigos Hospital, University of Southern California, Reporting Period, July 1, 1982-Mar. 31, 1983. 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, December 1980. Rich, S., Aged Care Experiment Is Blocked, The Washington Post, Mar. 29, 1984. Richman, A., Testimony before the Subcommittee on Aging, Senate Committee on Labor Relations and Human Resources, U.S. Congress, July 14, 1983. Rubenstein, L., The Clinical Effectiveness of Multidimensional Geriatric Assessment, J. Am, Geriat. Soc. 31(12):758-762, 1983. Rubenstein, L. Z., Wieland, D., English, P., Josephson, K,, Sayne, J. A., and Abrass, I. B., The Sepulveda VA Geriatric Evaluation Unit: Data on FourYear Outcomes and Predictors of Improved Patient Outcomes) .J. Am. Geriat. SOC. 32(7):503-512, 1984. Rudnitsky, H., and Konrad, W., Trouble in the Elysian Fields, Forbes, Aug. 29, 1983, pp. 58, 59. Rusallem, Herbert, and Rusallem, Helen, The Best Is Yet To Be, J. Rehab. 41(4):72-75, 1981. Samuel, F., Health Industry Manufacturers Association, Washington, DC, private communication, Feb. 14, 1984. Sands, D., and Suziki, T., ( Adult Day Care for Alzheimers Patients and Their Families, The Geron to]iglst 23(1):21-24, 1983. Scanlon, W. J., and Feder, J., Long-Term Care: Challenges and Opportunities, Heahh Care Financial Management, January 1984. Schlesinger, M., Wetle, T., Morse, J., and Stason, ,, ,,
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244 Technology and Aging in America 98. 99. 100. 101 102 103. 104. 105. 106. 107. 108. 109. 110. 111. W., ( Strategies for Change: Caring for the Elder Veteran, paper prepared for a conference on VA/Community Resources for the Older Veteran, 1983. Schneider, E. L., and Brody, J. A., Aging, Natural Death, and the Compression of Morbidity: Another View, N. Engl. J. Med. 309(1):854-855, 1983, Schuman, J. E., Beattie, E. J., Steed, D. A., Merry, G. M., et al., Geriatric Patients With and Without Intellectual Dysfunction: Effectiveness of a Standard Rehabilitation Program, Archives of Phuvsical Medicine and Rehabilitation 62:612-618, December 1981. Shanas, E., and Sussman, M. B., The Family in Later Life: Social Structure and Social Policy, Aging, Stability, and Change in the Family, R. Fogel, et al. (eds.) (San Diego, CA: Academic Press, 1981). Shen, J., and Zawadski, R., Long-Term Care Costs in a Consolidated ModelA Techmcal Report From On Lok, December 1981. Sherwood, S,, and Morris J. N., Alternative Paths to Long-Term Care, Hebrew Rehabilitation Center for Aged, Boston, MA, 1982. Sink, J. M., and Craft, D., Legislation Affecting Rehabilitation of C)lder People: Present and Future, J. Rehab. 41(4):85-89, 1981. Smith, G., private communication, 1984. Snyder, L. H., Rupprecht, P., Pyrek, J., Brekhus, S., and Moss, T., Wandering, The Gerontologist 18(3):272-280, June 1978. Stassen, M., and Holahan, J., Long-Term Care Demonstration Projects: A Review of Recent Evaluations (Washington, DC: The Urban Institute, February 1981). Stern, V. W., and Redden, M. R., TechnoZogv for Independent Living: Proceedings of the 1980 Workshops on Science and Technology for the Handicapped (Washington, DC: American Association for the Advancement of Science, 1982). Szeto, A. Y. J., Tingle, L. A., and Cronk, S. R., Automated Retrieval of Information on Assistive Devices, Bulletin of Prosthetics Research 10(36): 27-34, fall 1981. Tolliver, L. P., Testimony before the Subcommittee on Aging, Senate Committee on Labor and Human Resources, U.S. Congress, July 14, 1983. Troll, L. E., and Schlossberg, N. K., (How AgeBiased Are College Counselors? Industrial Gerontology, summer 1971, pp. 14-20. Ullmer, J., Abrahams, L., and Brown, D., (Adult Day Care Clients: A Distinct Population, The Journal of Gerontological Social Work 4(4):153166, summer 1982. 112 113. Unger, B., High Technology for the Handicapped: Roles for Consumer Involvement and the Small Business Sector, Technology for Independent Living, V. W. Stern and M. R. Redden (eds.) (Washington, DC: American Association for the Advancement of Science, 1982). U.S. Congress, Congressional Budget Office, Demographic and Social Trends: Implications for Federal Support of Dependent-Care Services for Children and the Elderly, Washington, DC, June 15, 1983. 114. U.S. Congress, U.S. Comptroller General, General Accounting Office, The-Well Being of Older Peo115 116, 117, 118. 119. 120. 121. 122. 123. ple in Cleveland, C)hio, HRD 7?-?o, Washington, DC, Apr. 19, 1977. U.S. Congress, U.S. Comptroller General, General Accounting Office, Home HealthThe Need for a National Policy to Better Provide for the Elderly, HRD 78-19, Washington, DC, Dec. 30, 1977. U.S. Congress, U.S. Comptroller General, General Accounting Office, Medicare Home Health Services: A Difficult Program to Control, HRD 81-155, Washington, DC, Sept. 25, 1981. U.S. Congress, U.S. Comptroller General, General Accounting Office, Improved Knowledge Base Would Be Helpful in Reaching Policy Decisions on Providing Long-Term, In-Home Services for the Elderly, HRD 82-4, Washington, DC, Oct. 26, 1981. U.S. Congress, U.S. Comptroller General, General Accounting Office, The Elderly Should Benefit From Expanded Home Health Care But Increasing these Services Will Not Insure Cost Reductions, IPE 83-1, Washington, DC, Dec. 7, 1982. U.S. Congress, US, Comptroller General, Genera: Accounting Office, Medicaid and Nursing Home Care: Cost Increases and the Need for Services Are Creating Problems for the States and the Elderly) IPE 84-1, Washington, DC, Oct. 21, 1983. U.S. Congress, Library of Congress, Congressional Research Service, Health Care Expenditures and Prices, Issue Brief No. IB 77066, by Price & Lundy, Washington, DC, Aug. 23, 1983. U.S. Congress, Library of Congress, Congressional Research Service, Hospice Care Under Medicare, Issue Brief No. IB 82042, by Price, Washington, DC, Oct. 5, 1983. U.S. Congress, Office of Technology Assessment, Technology and Handicapped People, OTA-H-1?9 (Washington, DC: U.S. Government Printing Office, May 1982). US. Congress, Office of Technology Assessment, Alzheimer Disease Fact Sheet, Washington, DC, 1983, 124. U.S. Congress, U.S. Senate, Special Committee on
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Ch. 7Techno/ogies, Functional Impairment, and Long-Term Care 245 Aging, Developments in Agng, 1983, vol. 2, Washington, DC, 1984. 125. U.S. Department of Health and l-iuman Services, Health Care Financing Administration, LongTerm Care: Background and Future Directions, HCFA81-200P, Washington, DC, January 1981. 126. U.S. Department of Health and Human Services, Health Care Financing Administration, The Medicare and Medicaid Data Book, 1983, 03158, Baltimore, MD, December 1983. 127. U.S. Department of Health and Human Services, Health Care Financing Administration, private communication, Mar. 23, 1984. 128. U.S. Department of Health and Human Services, Public Health Service, National Center for Health Statistics, Characteristics of Nursing Home Residents, Health Status and Care Received: National Nursing Home Survey, May-Dec., 1977, No. 811712, Washington, DC, April 1981. 129. U.S. Department of Health and Human Services, Public Health Service, National Center for Health Statistics, Advancedata, Americans Needing Help to Function at Home, No. 92, Sept. 14, 1983. 130. U.S. Department of Health and Human Services, Report of the Under Secretary: Task Forces on Long-Term Care, April 1981. 131. 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. 132. Veterans Administration Task Force on the VA Geriatric Plan, Caring for the Older Veteran, Report of the Veterans Administration Special Medical Advisory Group, July 18, 1983. 132a. Veterans Administration Task Force on the VA Geriatric Plan, The Aging Veteran, May 1982. 133. Vitaliano, P. P., Breen, A. R., Albert, M. S., Russo, J., and Prinz, P., Memory, Attention, and Functional Status in Community-Residing Alzheimer Type Dementia Patients and Optimally Healthy Aged Individuals, .J. Gerontol. 39(1):58-64, 1984. 134. Vladeck, B. C., Unloving Care: The Nursing Home Tragedy (New York: Basic Books, 1980). 135. Walders, D., Research Considerations for Older Disabled Individuals,J. Rehab. 41(4):90-93, 1981. 136. Weisberg, J., Raising the Self Esteem of Mentally Impaired Nursing Home Residents) SociaI Work 28(2):163-164, March/April 1983. 137. Weissert, W. G., Two Models of Geriatric Day Care: Findings From a Comparative Study) The Gerontologist 16(5):420-427, 1976. 138. Weissert, W. G., ( Innovative Approaches to LongTerm Care and Their Evaluation, paper prepared for the Conference on the Impact of Technology on Long-Term Care, Feb. 16-18, 1983, revised Sept. 30, 1983. 139. Williams, M., Independent Living and Older People, 3. Rehab. 41(4):69-71, 1981. 140. Williams, T. F., Assessment of the Elderly in Relation to Needs for Long-Term Care: An Emerging Technolo~, paper prepared for the Conference on the Impact of Technology on Long-Term Care, Feb. 16-18, 1983. 141. Winklevoss, H. E., Statement before the Senate Special Comittee on Aging, Washington, DC, May 25, 1983. 142, Winograd, C. H., Mental Status Tests and the Capacity for Self-Care, J. Am. Geriat. Soc, 32(1):49-55, 1984. 143. Zarit, S. H., Zarit, J. ~M., and Reever, K. E., Memory Training for Severe Memory Loss: Effects on Senile Dementia Patients and Their Families, The Gerontologist 22(4):373-377, 1982.
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Chapter 8 Health Care Costs and Access to Technology for Older Persons
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Contents Pag e Introduction . . . . . . . . . . . . . . . . 249 Health Spending of Young and Old. . . . . . . . . . . . 251 Technology, Aging, and Other Factors Affecting Health Expenditures . . . 252 Selecting Appropriate Technologies for Older Persons . . . . . . . 257 Appropriate Care . . . . . . . . . . . . . . 257 Use of Health Care Technologies . . . . . . . . . . . 258 Appropriate Providers . . . . . . . . . . . . . 259 Cost-Containment Strategies . . . . . . . . . . . . 259 Federal and State Efforts to Contain Costs of Institutional Care . . . . 261 Cavitation Approaches . . . . . . . . . . . . . 263 Technology and Coordination of Federal Health Programs . . . . . . 263 Federal Health Programs. . . . . . . . . . . . . 264 Hospital Backup . . . . . . . . . . . . . . 264 Information Technology for Coordination of Heahh Programs . . . . . 266 Financing Alternatives for Health and Long-Term Care. .....,... . . . . 266 Findings and Conclusions . . . . . . . . . . . . . 268 Research Priorities . . . . . . . . . . . . . . 269 Congressional Issues and Options . . . . . . . . . . . 270 Chapter preferences . . . . . . . . . . . . . . 272 Tables Table No Pag e 18. Average Annual Compound Rates of Growth of Benefits and Enrollees, Fiscal Years 1978-82 . . . . . . . . . . . . . 254 19. Factors Accounting for Growth in Expenditures for Selected Categories of Total Systems Cost, 1971-81 . . . . . . . . . . ., 255 20. Relative Contributionof Different Factors to the Total Increase in Real Expenditures for Physician Services . . . . . . . 256 21. Average Utilization of Health Services by Elderly Medicare Beneficiaries, by Type of Supplementation . . . . . . . . . . . 260 22. Formal Long-Term Care Expenditures in Hospital Care Nursing Home Care, and Community-Based Care, by Source of Funds . . . ., . . 265 Figures Figure No. Pag e 24. Percentage Distribution of Personal Health Care Expenditures by Source of Funds and Age Group, Calendar Year 1978 . . . . . . . . 252 25.Per Capita Personal Health Care Expenditures for the Aged, by Source of Funds and by Type of Care, Calendar Year 1978 . . . . . . 252 26. Factors Accounting for Growth in Total Health Costs, 1971-81 . . . . 253
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Chapter 8 Health Care Costs and Access to Technology for Older Persons Introduction Health care costs, including long-term care expenditures, have grown rapidly over the last three decades, increasing from $12.7 billion (4.4 percent of gross national product (GNP)) in 1950, to $322.6 billion (10.5 percent of GNP) in 1982 and an estimated $357 billion in 1983. Total health care expenditures are projected to reach 12 percent of GNP by the year 2000 or sooner (10,15). Growth in per capita health care costs, augmented by the growth in numbers of the U.S. population over 65, has produced an impending crisis in the funding of Medicare and Medicaid, major payers for health service to the elderly. Technological development in recent decades has increased the effectiveness and sophistication of health care. It has also increased its costs, The relationships between cost, technology, and financing are complex, in some cases not well understood, and require continuing investigation. Although new medical technologies have raised the cost of careby expanding the types of problems that can be diagnosed and treatedthey have also provided more efficient strategies for the management of acute and chronic disease and functional disability. Depending on how it is applied, the same technology can be either costsaving or cost-enhancing. Exercise electrocardiography, for examplea noninvasive diagnostic test for coronary heart diseasecan be cost-saving if it is used to screen candidates for invasive diagnostic evaluation, thereby reducing the number of invasive tests. If it is simply added to the diagnostic workup for patients for whom invasive testing is already planned, it increases the cost of care. The net effect of technology on the cost of care therefore depends on both the technology and the ways in which it is used. 1OTA defines medical technologies as cirugs, dm~ices, and nledi cal and surgical procedures used in medical care, and the organizational and support systems within which they are produced. If the growth of health expenditures can be contained at levels comparable to the general rate of inflation, these expenditures will halt their encroachment on the Nations resources. How much health care is enough, who is responsible for paying, to what extent equality of access should be assured, and other ethical questions combine with questions of necessity and appropriateness to create an exceedingly complex set of issues that apply to all age groups of consumers and all payers for care. This chapter emphasizes issues related to technology and the aging of the U.S. populatim in the context of the demand for fiscal restraint. Control of escalating health care spending is a priority in light of current and projected Federal deficits as well as the growing costs of employee health plans and personal expenditures for care. Because those over 65 use more health services than any other age group and the Federal Government has assumed significant responsibility for funding these services, the kinds and costs of care for the elderly are a particular congressional concern. Instituting effective controls over costs of covered benefits as well as total health spending thus deserves increased attention. Congress has paid some attention to slowing the growth of these costs. Direct attention has been given to controlling Federal expenditures for Medicare and Federal contributions to Medicaid. Total savings may be reduced by cost shifting to third-party payers and individuals, or from one Federal program to another. Entitlement programs are primary concerns because their costs are less easily controlled than other Federal health activities. Access to health-related technologiesfor those over 65 and for the poor of all ageshas also been a major congressional concern. Recognizing that 249
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250 l Technology and Aging in America the cost of technologies can be a strong deterrent to their availability and use, Congress has legislated programs to assist these people with the purchase of health care. Medicare is the largest Federal health care financing program. Medicaid is a federally aided, State-run, means-tested (eligibility based on income) program that provides health benefits for the categorically needy, including the poor elderly. The Veterans Administration (VA) provides resources for the care of older veterans. In addition, the Federal Government provides funding for health resource programs (e.g., block grants to States, health planning) designed to improve the distribution, supply, and cost effectiveness of these services. Federal policy for health and long-term care has in part shaped the development of technology, the settings in which it is used, and access to it for those over 65. The rate of adoption, and hence the availability of a new technology, is strongly influenced by whether or not it is eligible for reimbursement and whether it is regulated by health planning activities. Because reimbursement has been more liberal for inpatient procedures, hospital-based care has been encouraged. Recent changes have encouraged more outpatient diagnostic and surgical procedures. The implementation of prospective payment under Medicare, as discussed earlier and in this chapter, may shift the more acutely ill patients and the technologies for their care to outpatient clinics, nursing facilities, and home care settings. More sophisticated technology and personnel may thus be required in these settings which, in turn, may increase the cost of care in them. Because Federal payments for health care represent about one-third of total hospital revenues, one-third to one-half of physician payments, and about half the cost of long-term care, changes in Federal reimbursement strategies may induce changes in the use of technology throughout the health care system. To the extent that other payers do not adopt similar strategies and providers are able to maintain full practices without participating in Federal programs, older persons who depend on these programs may suffer reduced access to health care technologies. Even under cost reimbursement policies for acute care, a number of technologies are identified elsewhere in this report that would be beneficial to the over65 age group but maybe currently underutilized, This results, in part, because of their cost and the lack of reimbursement under Federal and State programs. Coverage for additional services could increase overall costs, but there is potential for limiting the increase by achieving greater functional independence. Federal and federally assisted State programs provide acute and long-term care for the elderly. Medicare, Medicaid, z income support programs, services through block-granted programs, and VA programs are among the efforts to provide care for those over 65. Using these benefits to access the proper mix of acute and chronic health care, as well as appropriate supportive and social services, can be difficult. Lack of continuity of services can sometimes lead to inappropriate and poor quality of care and increased costs due to duplicated services and the loss of functional independence. A number of observers have identified mismatches between Federal and private health benefits and the needs of an aging population (9,39,40). The success of the Medicare program in providing access to acute care technologies has contributed to the recent declines in mortality for those over 65. However, as noted in chapters 2 and 3, decreasing mortality has not been accompanied by comparable declines in morbidity in the older population, and the elderly therefore carry a larger burden of illness (36). Growing numbers of older individuals with multiple health problems will continue to increase the demand for technologies to prevent and manage chronic disease and for long-term care (10,14). Policymakers focusing on cost containment must recognize that the changing needs of the population served by Medicare have increased Medicare costs and stimulated spillovers into other Federal programs, most notably Medicaid. This mismatch between needs and benefits has resulted in increased out-of-pocket spending by individuals as well. Increased costs may deter older users from seeking needed care for correctable problems (e.g., blood-pressure Many older persons requiring long-term care come to depend on Medicaid benefits by spending down enough to become eligible, i.e., by liquidating assets and exhausting their finances on highcost, long-term care.
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Ch. 8Health Care Costs and Access to Technology for Older Persons 251 control, vision problems, and routine health evaluations for chronic disorders), potentially resulting in greater ultimate costs for acute and restorative care. The financial burden of long-term care is a particularly severe problem for those over 75 because the risk of needing prolonged care increases with age. Few benefits are provided by Medicare, and private insurance is largely unavailable to protect against this eventuality. Medicaid is the only safety net and provides benefits only after personal resources are exhausted. Depletion of resources may have the additional effect of eliminating future opportunities for community care. Should a patients condition improve or the availability of new technologies permit a transition, the patient might no longer have a residence or lack the means to be financially independent. This chapter provides an overview of factors affecting health expenditures and cost-containment efforts. Included are a comparison of spending by those over 65 and by younger age groups; the contribution of technology, aging, and other factors to growth in health care costs; the goals for appropriate use of technology; the characteristics of older health care consumers that influence their use of services and technologies; costcontainment activities and some of their implications for cost and quality of care; and the need for better coordination among Federal programs. The hospital backup problem is explored as an example of the impact of poor coordination on costs and quality of care. The potential for better access to information as a means to improve coordination and outcomes is also discussed. The major issues are then detailed, and options are presented for congressional consideration. Health spending of young and old Health care spending differs significantly among various age groups. In 1978, those under 19 (31 percent of the U.S. population) accounted for 12 percent of the $168 billion health care expenditure, while those 19 to 64 (58 percent of the population) accounted for 59 percent, and those over 65 (11 percent of the population) accounted for 29 percent of the total. This higher per capita spending by older age groups results from increased contact with the health care system and an increased number of services required per visit. Sources of payment also differ by age group. Public and private health benefits provided by government, industry, and direct purchase of insurance have grown for all age groups. Private insurance and personal expenditures are the major sources of payment for younger persons (about 70 percent), while government (Federal, State, and local) finances the greater proportion of the care provided for those over 65 (about 63 percent) (14), as shown in figure 24. Hospital care represents the major expenditure for all age groups, but its relative importance increases with age. Physician services rank second to hospital care for younger persons and third after hospitals and nursing homes for the older population. Nursing home use is dominated by those over 65, and represents one-fourth of total health expenditures in this age group. Dental visits consume a smaller proportion of the health care budget for those over 65, but the average charge is higher than for those under 65. Annual per capita expenditures for prescription drugs and sundries increase threefold between the under-19 age group ($41) and the over-65 age group ($133) (14). The growth of the older population will continue to exert pressure on Federal programs, but acceleration of health spending is a problem for individuals of all ages, their insurers, and their employers. Although Medicare and Medicaid provide an important subsidy affording some financial protection for the elderly, these programs do not eliminate the need for significant out-of -pocket outlays (see fig. 25). Many necessary services, such as eyeglasses, hearing aids, and extended nursing home care, are not covered by Medicare. Also, private supplemental (medigap) insurance to cover deductibles is purchased by more than 38-800 0 85 9
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252 Technology and Aging in America Figure 24.Percentage Distribution of Personal Health Care Expenditures by Source of Funds and Age Group, 1978 $19.9 billion I 1 i u $98.6 billion 720/o Under 19 19-64 Age group $49.4 billion n 370/0 % 65 and over SOURCE: Fisher, 1980 (14). 63 percent of the elderly, and another 14 percent receive Medicaid assistance (21). The value placed on protection against health expenses is underscored by the fact that personal income does not correlate with insurance premiums paid. In 1981, the out-of-pocket per capita expenditure of $914 for health services (excluding costs for insurance premiums) by those over 65 represented 11 percent of their per capita income. Recent estimates indicate that this proportion may reach 14 or 15 percent in 1984. Technology, aging, and other factors affecting health expenditures Much attention has been given to the increase in demand for health services resulting from the growth in the older population, especially the Figure 25.-Per Capita Personal Health Care Expenditures for the Aged, by Source of Funds and by Type of Care, 1978 $2,026 Other public programs I $366 $792 $30 Total Hospital care Physicians All other services SOURCE: Fisher, 1980 (14), growth in numbers of those over 75. The elderly need and use more medical services. Yet the growth of this high-risk group accounts for only a small amount of the increase in total personal health care expenditures. Most of this increase has been brought about by general inflation; the increased cost of capital, labor, and supplies; inflation of medical care prices in excess of general inflation; and changes in the types and quantities of services providedservice intensity often used as a proxy measure for increased technology (11,15,46,48). Intensification of services includes not only the introduction of new technology but also increased labor intensity and more frequent use of existing technology. This section
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Ch. 8Health Care Costs and Access to Technology for Older Persons l 253 explores the contribution of technology and aging of the population relative to other factors fueling the growth of health expenditures. Among the economic, policy, and social factors to which analysts have attributed the growth in real spending (15,37,46,48) are: l l l l l payment mechanisms: third-party payers that insulate patients and physicians from true patient costs, and fee-for-service and cost-based reimbursement methods that lack incentives to control costs; technological innovation: product innovations that expand range of services, and process innovations that can increase costs and quality of care; increased use of existing technology; population factors: shifts in age-sex characteristics, increases in real income, and psychological factors such as the value of good health and a reluctance to forego heroic care; and health resources: -cost and supply of facilities, -cost and supply of equipment, and -cost and supply of manpower. An analysis of health expenditures and costs between 1971 and 1981 shows that real increases in services accounted for 28.6 percent (fig. 26) of the increase in expenditures during that period (15). In specific terms, a recent study by the Congressional Budget Office found that the major increase in program outlays was due to increased benefits per user rather than to either increased enrollees in the program or increased proportions of those enrollees receiving services (table 18). Some of the increase in per capita costs reflects a growing burden of care due to the aging of the population (37 percent of those enrolled in Medicare were over 75 in 1966; this proportion rose to 41 percent in 1979), but utilization rates increased significantly even in the same age group (e.g., a 27-percent increase in hospital discharge rates in enrollees 65 to 66 between 1967 and 1976), suggesting higher utilization rates overall (45). Medical technology is the primary factor in the increase in health expenditures. Analyses of the impact of medical technology on health care costs can be addressed in the aggregate or from a techFigure 26.-Factors Accounting for Growth in Total Health Costs, 1971.81 Total national health expenditures Personal health care spending lmplicit price deflator for Implicit price deflator for total national health expenditures systems cost (health prices in (health prices in excess of excess of overall inflation) overall inflation) NOTE: Health industry specific factors are shaded, Total systems cost is personal health care spending. SOURCE: Freeland and Schendler, 1983 (15).
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. 254 l Technology and Aging in America Table 18.Average Annual Compound Rates of Growth of Benefits and Enrollees, Fiscal Years 1978-82 (in percent) Aged Disabled All enrollees enroliees a enrollees Hospital insurance: Total benefits . 18.4 Number of enrollees 2.3 Proportion of enrollees receiving reimbursement 2.1 Benefits per user 13.4 Supplementary medical insurance: Total benefits . 20.7 Number of enrollees 2.3 Proportion of enrollees receiving reimbursement 2.9 Benefits per user 14.7 SOURCE: Congressional Budget Office, 1983 (45). 19.3 1.7 1.1 16.1 24.0 2.2 2.0 19.0 18.5 2.2 2.0 13.7 21.2 2.2 2.9 15.3 nology-specific perspective. The aggregate analysis is useful although it ignores the patient benefits derived from technological innovation. The technology-specific approach is helpful in establishing the cost effectiveness of a particular technology or class of technologies but ignores the overall impact on systems costs. Both kinds of analyses are important in assessing the structure and funding of health and long-term care. A recent OTA study on technology and the Medicare program (48) found that in the aggregate, technology-related factorsmore services per enrollee and the increase in costs of those services in excess of general inflation-accounted for about 30 percent of the growth in Medicare costs per enrollee between 1977 and 1982. These factors service intensity and excess medical price inflationare influenced by other factors as well as technology. At best, they provide an oblique view of the impact of technology on costs of care. Even recognizing the limitations of aggregate techniques and that available reports encompass all age groups, an analysis of total personal health expenditures is useful for evaluating the differential effects of technology and population factors on expenditures for hospital care, physician services, dental services, and nursing home care (table 19). General inflation accounted for about 50 percent of the increase in all categories of service. The technology-related factors discussed above accounted for about 35 percent of the increase in expenditures for hospital care and physician services, but less than 20 percent of the increase for dental care and nursing home services. Utilization factors are related to population aging, reflecting older Americans increased burden of illness, and to other factors that induce demand, as discussed later in the sections on cost containment and consumer characteristics. Aggregate population growth has been constant across different services, as would be expected, at about 7 percent. Per capita visits exhibit wide variability, ranging from .4 percent for physician visits to +18 percent for hospital outpatient services to +20 percent for nursing homes. Because these statistics reflect the net effect for all age groups, differences in utilization trends for different age groups should be noted. Visits to physicians and hospital discharges have been decreasing for younger age groups. Physician visits for persons over 65 have remained relatively constant while hospitalization rates, measured by both surgical and total discharges, have been increasing. Average lengths of stay have been decreasing for all age groups but remain longer for those over 65. The relative importance of the utilization-related factors would thus be greater in the over-65 age group. The increase in costs for physician care between 1970 and 1979 was analyzed from a different perspective (37). The effect of technology was calculated indirectly as the residual, after accounting for other factors thought to be causally related to expenditure increases. 3 This residual was 11 percent (see table 20). Population aging was considered directly and accounted for 15 percent of the increase, due to increases in the size of high-risk groups such as the very old. Variables which influence demand for and access to carephysician-population ratio and insurance for physician services-accounted for 40 percent of the increase. Whe independent variables selected for this regression study emphasized factors that might cause changes in health spending. The studies by Freeland and Schendler (15) and by (48). OTA decomposed expenditures into their component parts rather than attempting to identify causal factors. This illustrates the influence of underlying assumptions in these types of analyses.
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Table 19.-Factors Accounting for Growth in Expenditures for Seiected Categories of Totai Systems Cost, 1971-81 a Community hospital care Nursing home Total Factors accounting for how Inpatient expenses b Outpatient Physicians Dentists care excluding systems cost medical care expenditures rose Inpatient days Admissions exPenses b services services ICF-MR (personal health care) Economy-wide factors: 1. General inflation . . . . . 51.7% 51.7%0 41 .60/0 58.1 0/0 58.60/o 53.00/0 56.80/0 2. Aggregate population growth . . 7.2 7.2 5.6 8.1 8.2 7.4 7.9 Health-sector spacific factors: 3. Growth in per capita visits or patient days . . . . . 4.2 8.6 17.9 -3.4 14.2 19.8 NA 4. Growth in real services per visit or per day (intensity) . . . . 25.2 20.8 25.3 27.4 17.6 13.1 NA 5. Medical care price increases relative to general price inflation . . . 11.7 11.7 9.6 9.8 1.4 6.7 7.0 Addenda: Growth in real services per capita. . . . . . . . Total . . . . . . . . 28.3 100.0 100.0 100.0 100.0 100.0 100.0 100.0 = Not available. tota systems cost is called personal health care In Gibson and Waldo (1982). bcommunity hospital expenses are split into inpatient and outpatient expenses using the American Hospital Association (1982) procedure. csee table A-13 for price variables. SOURCE: Freeland and Schendler, 1983 (15).
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256 Technology and Aging in America Table 20.Relatlve Contribution of Different Factors to the Total Increase in Real Expenditures for Physician Services, 1970-79 Percent Factors increase Physician-population ratio. . . . . 22 Total population growth . . . . . 19 Age distribution of population . . . . 15 Insurance for physicians services . . . 15 Per capita income . . . . . . 9 Specialty mix. . . . . . . . 1 Prices of practice inputs (other than M.D.) . 8 Residual (technology) . . . . . 11 Total . . . . . . . . . 100 SOURCE:Adaptad from Sloan and Schwartz, 1983(37). An analysis of the grow thinthe use and costs of home care showed that the average rate of increase in expenditures was 31 percent per year from 1971 to 1980. This increase is attributable to the growth in the number of individuals served (59 percent) increases in the number of visits for those served (7.4 percent), and rises in costs and charges for each visit (39.1 percent). Older patients use home health services at higher rates (34.8 per 1,000 v. 23.4 per 1,000) but received fewer visits (23.1 visits per person v. 26,1 visits per person) compared to the disabled (51). The increase in the number of persons served is in part due to the increased numbers of persons needing care, but is also strongly influenced by the growth in the number of home care agencies and changes in reimbursement policy. Although costs and charge increases are the technologyrelated elements, they also reflect a number of factors unrelated to technology. The availability of home care is clearly an influential factor. There were 3,959 home health agencies certified to receive Medicare reimbursement as of June 1983. These include Visiting Nurses Associations, official health agencies (State and local government), hospital-based programs, proprietary agencies, private nonprofit programs, and rehabilitation and skilled nursing home-based programs. Home care is likely to continue to grow and become more sophisticated with home health agencies, hospitals, and nursing homes diversifying to include more comprehensive outpatient services, including medical equipment for home use, particularly as reimbursement policy encourages earlier hospital discharges. New Federal policies during the last two decades have encouraged this growth. They include (34): l l l l l l 1965Medicare/Medicaid bills were enacted that provide limited home health care reimbursement. 1968Home care was required as an alternative to skilled nursing home care for Medicaid participation. 1972The coinsurance requirement for Medicare Part B was eliminated. 1980Medicare dropped the requirement for prior hospitalization and eliminated the limit on the number of visits deductible. 1982The Tax Equity Financing Reform Act (TEFRA) permitted reimbursement for some hospice care. 1983Prospective payment for hospital care was enacted and encouraged earlier discharges. This brief review of several analyses of the growth in health spending illustrates the difficulty in establishing quantitative estimates of the causal factors and their relative importance. Different conclusions can be reached, depending on the technique and the variables selected for analysis. These studies do establish that technical innovation, increased utilization due to greater need, and increased access are major components. Technology appears to be more important in the acute medical care arena, whereas utilization factors have been more important in long-term care, including nursing homes. Dental care is an interesting special case in considering the impact of technology, relative to other factors, on cost of care. Expenditures for dental care grew at an annual rate of 13.1 percent during the 1970s, reflecting increased per capita utilization, new technical innovations such as high-speed drills, and growth in complex orthodontic and periodontal procedures, Yet inflation in dental prices contributed only 1 percent to the increase, even though the dental Consumer Price Index (CPI) increased at an annual rate of 7.6 percent; price inflation in both hospital care and physician services was much higher. This suggests that dentists absorbed a greater proportion of the increased cost of operation.
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Ch. 8Health Care Costs and Access to Technology for Office Persons l 257 Dental services are financed in large part by out-of-pocket expenditures, although dental insurance benefits are rapidly expanding. The absence of third-party reimbursement and an ample supply of dentists to allow competition have been suggested as reasons for lower price inflation for this service. Better productivity (high-speed drills increase the number of cavities that can be filled per visit), the effectiveness of fluoridation, and other preventive dental procedures may also have contributed to constraining cost growth (13,15, 26)29). Employee health plans are currently adding dental benefits. In some cases, dental benefits are being substituted for mental health benefits (used by fewer beneficiaries); this spreads benefit outlays over more beneficiaries (Employees Benefit Plan Review, 1981, cited in 15). older persons who depend on Medicare as their primary health insurer may thus enter the system with better dental health and practices, but also may be accustomed to greater insurance coverage, which could increase the pressure to add dental benefits or create a market for dental insurance in this population. The benefits of improved access to health technologies for those over 65 have occurred primarily as a result of the enactment of Medicare and other Federal programs. In 1966 medical care particularly hospitalization-became affordable to many older persons for the first time. Their initial demand for hospitalization displaced younger persons until additional capacity was built. Inpatient care has continued to grow while physician visits have remained fairly constant, partly in response to reimbursement policy. The challenge is to find the most efficient technologies as well as the most effective. Technologyspecific approaches are most useful for this task, but the results must be effectively applied to achieve the goal of improved efficiency. OTA studies have assessed the impact of specific technologies and stressed the importance of assessing both their costs and benefits. Case studies on technologies for hearing impairments and managing incontinence are being published in conjunction with this report. Additional case studies on preventive, diagnostic, and therapeutic technologies such as cervical cancer screening, X-ray procedures, and joint replacement have also been done (see 47). Selecting appropriate technologies for older persons Appropriate care l l Consensus about the goals of care for older persons is important in considering how to contain l costs and also in setting performance objectives for the care system. Geriatricians have begun to l focus on what constitutes appropriate care for those over 65, which will influence the selection l of technologies and the settings in which they are broadened approach to health assessment, application of appropriate medical care for acute and chronic disease, acceptance of the legitimacy of death, allowance of sufficient time for recovery, attention to care in the least restrictive environments, and continuity of care, including health and social services. used. The factors that influence selection of apThe geriatricians primary concern is not econ propriate care include the following (19,38): omy, but appropriateness. Appropriate may, l emphasis on preservation and restoration of in fact, lead to economy as long as cost controls functional ability, are considered simultaneously. The original goals building and maintaining a support system, of the Medicare program were developed to ad-
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258 Technology and Aging in America dress problems in access to services and technology for older Americans who were inadequately served by private insurance. The focus on access problems gave rise to the cost-reimbursement approach that, in part, has fueled the rise in costs of care and in some cases the inappropriate application of technology. The elderly are again unprotected against certain expenditures for needed care. Policy alternatives must seek to balance concerns for access and quality with efficiency and economy as incentives for developing health care and health financing technologies. The ways in which older consumers use services must also be considered. Appropriate utilization is a key factor in maintaining fiscal solvency and quality of care. use of health care technologies Demand for and access to health care technologies by older consumers are influenced by physical and psychosocial factors as well as economic factors. These factors are important in understanding how clients respond to care providers recommendations. They are also important in evaluating cost-containment schemes designed to reduce overutilization of health care services by the elderly. Cost+containment strategies that shift costs too heavily to older patients can cause many of them to delay care. Long delays can result in increased disability and higher costs, but overutilization will increase costs and not improve outcomes. Providers must recognize these factors in responding to older patients and selecting technical interventions. Some of the factors are agebased and can be expected to grow in importance in future cohorts of older persons. Others may be related to experiences and opportunities that can change dramatically in future cohorts due to general trends or specific educational efforts. The clinical nature of illness in geriatric patients is different. Some diseases occur only in the elderly and classic symptoms may be replaced by nonspecific problems such as refusal to eat, falling, incontinence, dizziness, acute confusion, and weight loss or failure to thrive. The chronic nature of diseases and the frequency of multiple disorders are also important in this age group (3). The nature of some diseases makes their symptoms difficult to distinguish from generally accepted effects of aging. In addition, nonphysiologic factors such as the older persons perceived seriousness of symptoms, denial of illness, ahernative explanation of symptoms (e.g., just getting old), and access to treatment influence the decision to seek or delay care (2,25). Several studies have shown severe underreporting of symptoms by older persons (1,3,4,22,56). Underdiagnosis of correctable functional (both physical and mental) and medical problems in the
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Ch. 8Health Care Costs and Access to Technology for Older Persons 259 elderly is supported by the recent experience of the Geriatric Assessment Units, which have found an average of three correctable problems per patient (18). Many of the conditions identified in these studies do not require sophisticated diagnostic technology, but could be identified with careful evaluation of symptoms. This burden of unreported illness supports the validity of studies reporting delayed care-seeking behavior of the elderly (3,8,41). older persons seem less likely to exaggerate their health problems than younger persons, and their complaints are more likely to be based on important underlying diseases. The response of health professionals may reinforce the patients denial of and failure to report functional disabilities. Health professionals may focus on specific diseases, rather than the functional status, of an older individual. Vision, hearing, and dentition problems are examples of neglected areas in primary care. The 1971-75 Health and Nutrition Examination Survey (HANES) found those 56 to 74 were more likely to receive an EKG or chest X-ray but were less likely to have a vision or hearing test than younger persons. Anecdotally, older patients complain that health professionals fail to listen and follow up on their specific functional complaints (18). Appropriate providers In addition to appropriate goals of care and appropriate consumer response, the types of providers may influence the cost, selection of technologies, and the efficacy and efficiency of care. The team care approach is accepted as the ideal strategy. Members of the care team that must respond to the broad spectrum of needs for the frail elderly can include physicians, nurse practitioners, physician assistants, nurses, social workers, occupational therapists, physical therapists, speech therapists, and home health aides. These providers can also be specially trained in the care of geriatric clients. The impact of team care on the cost of care is influenced by management of the care team, the range of specific client problems, and the casemix that exists within a particular care setting. In general, highest efficiency can be achieved by matching patient needs with the least expensive provider having the requisite skills. The actual cost saving can be eroded by administrative costs of using additional providers and, as with technologies, other provider services can be additive rather than a substitute for more expensive care. Skills, licensure, legal requirements, and communication among team members must be carefully considered to assure maximum efficiency. Cross-training of certain geriatric providers may be one approach to providing care more efficiently. For example, if a particular clients primary needs are for social services but there is also a need to monitor or administer medication, an appropriate training program might be designed to certify some social workers to carry out this function. Nurses already provide some social service assistance while providing nursing care. Training programs to enhance these skills might improve the efficacy of intervention. Cost-containment strategies A number of approaches focusing on economic incentives for consumers and providers, controlling prices, assuring appropriateness of care, and l limiting expansion of facilities and services have been tried or discussed for controlling health care expenditures (43,45,48,49). These include: l l direct price controls, l changes in reimbursement strategies from cost-based to various types of prospective payment, utilization review programs and Professional Standards Review Organizations to review the appropriateness of care, health planning and certificate-of-need programs designed to control capital expenditure,
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260 Technology and Aging in America use of coverage policy to limit reimbursement to effective technologies, increased cost-sharing and coinsurance for Federal program beneficiaries to discourage overutilization, stimulation of more competition among health care providers and insurance plans, and contracting and preferred-provider approaches to channel patients to lower cost providers. Regulatory actions have been the principal approach to cost containment to date. Capping payments (e.g., Economic Stabilization Program, Section 223) has not controlled long-term cost increases. The diagnosis-related group (DRG) casemix approach (Public Law 98-21) for prospective payment has recently been legislated for Medicare hospital reimbursement. Health planning and peer review strategies to reduce the development of excess capacity and encourage appropriate utilization may have been responsible for decreases in length of stay in hospitals but have not been sufficient to control overall expenditures. Some attempts to rationalize coverage policy based on technology assessments have not been effective, in part due to lack of central direction and data deficiencies for Medicare intermediaries (48). A 1980 study found that cost-sharing decreases utilization of physician and hospital services for some patients (21,30), and that lack of supplemental coverage results in cost-shifting for those with chronic conditions (21). The reduction in physician services for Medicare beneficiaries was found to occur primarily in patients without chronic impairments (22 percent) and in the number of persons seeking physician services. Persons with chronic conditions (78 percent), who most intensively need care, were unaffected (21). In the same study, the number of hospital admissions was lower in the group without supplemental insurance, as shown in table 21. Utilization patterns and costs of services were similar once patients entered the system. Patients with public supplementation were the highest users, possibly due to poorer health status. The effects of the direct cost of services on utilization and health have not been evaluated in persons over 65. Preliminary results from the Rand Health Insurance study (5) show that in younger populations free care resulted in significantly higher utilization rates, but improved health outcomes were not demonstrable for broadly defined physical and mental health measures. Two improved outcomes were identifiedbetter bloodpressure control and improved corrected vision, suggesting that cost can deter persons from seeking needed care for some chronic conditions and that improved access to care can be beneficial for conditions with established treatment regimens. They also suggest that unlimited access to care can result in overuse of services without resulting in better general health. Future analyses of the data from this study will provide useful information about the use and benefit of health services for the nonelderly population studied. Extrapolation of these results to those over 65 must be Table 21.Average Utilization of Health Services by Elderly Medicare Beneficiaries, by Type of Supplementation, 1976 Annual physician visits No chronic Some chronic Type of supplementation conditions conditions Annual hospital days No supplementation: Medicare only. 1.66 6.72 2.51 (100%) (100%) (1 OO%) Private supplementation . . . 2.30 6.23 2.79 (139%) (93%) (111%) Public supplementation: Medicaid . 2.71 8.92 4.41 (1630/o) (1330/0) (1760/o) a The num~rg {n parentheses Irlctlcate the average utilization rate for a group relatke to the Utilization rate amon9 those beneficiaries who do not supplement their Medicare coverage. NOTE: Calculations baaed on tabulations from the 1976 Health Interview Survey. SOURCE: Link, Long, and Settle, 1960 (21).
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Ch. 8Health Care Costs and Access to Technology for Older Persons 261 done with caution because health problems and utilization of services may be quite different in older persons. Advocates of increased beneficiary cost-sharing and pro-competition approaches suggest that current reimbursement systemsgovernment and private insurance programs that insulate the consumer from the true cost of service-promote the use of excessive health services and promote higher fees by providers (24,43,45). Use of these approaches is aimed at reducing unnecessary services and making patients more prudent shoppers for medical care. Prudent buying by health consumers remains a largely uninvestigated proposition and presumes the ability of the patient to distinguish between unnecessary and essential services (48). Some researchers have suggested that health care is not an ordinary article of commerce (35), suggesting that it should be treated differently in the marketplace for technical and ethical reasons. Others have suggested that there are inherent problems in enabling patients to be prudent shoppers at the point of purchase (6) because: l consumers are poorly informed, l consumers cannot accurately assess the care they get, l consumers confront the system in times of crisis, and l consumers sacrifice other things to pay for health care. Periodic multiple-choice schemes in which selection of benefits is tied to the purchase of insurance removes the purchase decision from a crisis situation. However, appropriate selection of health insurance benefits requires a great deal of information. Also, because insurers are faced with the problem of adverse selection (those who are most frail purchase more coverage), the risk may not be spread over both high and low users. Channeling patients to lower cost providers through preferred-provider organizations or contracting may be effective in reducing the costs of care. The restriction of freedom of choice, however, places increased responsibility on the government and insurers to ascertain that incentives to reduce visits or ancillary services do not adversely affect the quality of care. In evaluating policy options, the total care impact of alternative strategies for meeting the projected increase in demand for health and longterm care services should be explored. In addition to operating and administrative costs for services, such other factors as capital costs and program startup costs should be considered. Federal and State efforts to contain costs of institutional care CONTAINING HOSPITAL COSTS Current cost-containment activities have focused on reduction of the costs of institutional carehospital and nursing home services. Prospective payment for hospital services is being phased in for Medicare, cost-control mechanisms have been enacted for a number of State Medicaid programs, and some States have instituted cost controls on all payers. It is hoped that because of the importance of Medicare revenues to hospitals, prospective payment for Medicare alone will reduce costs overall, 4 rather than cause a shift of cost to other individuals or other payers. Prospective payment systems become more effective in influencing the way hospitals deliver service when all sources of payment are covered. But cost-shifting will not be tolerated indefinitely by non-Medicare payers. The Medicare prospective payment system calculates costs on a per-case basis using DRGs to adjust for differences in the type and severity of cases. The case-mix adjustment reduces incentives for avoiding more difficult and costly cases. Still, prospective payment may encourage an increase in the number of admissions, particularly in the number of those with lower care requirements. Older patients are more likely to require more intensive services and longer periods for recovery. Current DRG categories may not adequately account for differences in severity of illness. The incentive to reduce the level of services for a patient argues for careful monitoring of the quality of care. The scope of services covered is not comprehensiveat least during the phase-in period. Capital costs, teaching costs, and outpatient costs are 4 For a complete discussion, see (48) and (49).
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. Technology and Aging in America not covered, providing an incentive for hospitals to shift costs to these categories. There are also incentives for shortening lengths of stay, but these may increase the use of outpatient services not covered under the system. Prospective payment should reduce the use of ancillary services and encourage the adoption of cost-saving technology. The impact of prospective payment on medical technology will be stronger if capital costs are ultimately included, but even here the impact must be considered on a case-by-case basis (48). States are also actively involved in trying to control the cost of hospital care. A publication by the Senate Special Committee on Aging provides an overview of these activities (53). Revenue caps, rate and budget review, DRGs, price competition, cavitation approaches, and channeling patients to specific providers are some of the mechanisms being tried. States with mandatory rate-setting programs did have slower growth of per capita hospital expenditures. New programs are being implemented in response to the Omnibus Reconciliation Act of 1981. The results of these efforts on costs, quality of care, use of technology, and health care providers, if they are documented, can provide useful information to guide Federal policy. CONTAINING LONGTERM CARE COSTS Most approaches to slowing the growth of longterm care costs have attempted to limit access to nursing homes or substitute lower cost community-based services for more expensive nursing home care. The number of nursing home beds available can affect utilization and cost. Licensed nursing home beds, estimated to number about 1.4 million in 1980, are operating at very highoccupancy rates percent and more. Control of the number of nursing home beds has been used to limit Medicaid nursing home expenses by some States (44). 5 Growth in numbers of beds is limited by the certificate-of-need policies in the States. For example, between 1976 and 1980, the number of beds %x GAO rqmrt for discussion of State Medicaid Policies for Funding Nursing Home Care (44). increased by 3 percent per year (44). For the 197881 period, aggregate nursing home days and the population over 75 also increased by 3 percent per year. Shortages in nursing home beds in some regions impede access for some beneficiaries and may increase the days spent in hospital waiting for nursing home placement, The feasibility of providing long-term care in noninstitutional settings has been clearly demonstrated for certain subgroups of the elderly. Evaluation of the cost and effectiveness of these programs has been difficult because of design problems. In general, savings in total system costs have not been demonstrated. Most agree that services delivered are valuable, but targeting strategies have not focused on those who are both functionally disabled and socially isolatedthose who are most likely to become institutionalized (55). The National Channeling Demonstration Programs are focused more directly on targeting, cost containment, and case management, to test whether a managed system of long-term care can produce more favorable results than the current system (7). The research and evaluation design for these studies has also been strengthened with the goal of producing definitive results (32). SECTION 2176 WAIVERS Section 2176 of the Omnibus Reconciliation Act of 1981 amended the Social Security Act to permit States to more freely experiment with home and community-based care. The requirements that aggregate spending not increase and that these services directly substitute for nursing home care make it illegal to use home and community services as an add-on. The problems with targeting services to those at risk for nursing home care have been discussed above. Difficulties in predicting what expenditures might have been without the waivers wilI make evaluation of cost savings from these programs difficult. Lack of adequate measures of patient outcomes or comparison groups also will inhibit cost-effectiveness evaluation (55). Programs such as these do, however, create incentives for new efficiencies in providing community-based services that are considered more desirable than nursing home care for many reasons that are not cost related.
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Ch. 8Health Care Costs and Access to Technology for Older Persons l 28.3 Cavitation approaches Since 1972, health maintenance organizations (HMOs) have been able to enter either reasonablecost or risk-based contracts for both inpatient and outpatient services for Medicare beneficiaries. The Health Care Financing Administration has established several cavitation demonstration projects for acute care services. Preliminary data indicate that better management of care and financial incentives have controlled costs and improved effectiveness (17,32). Cost savings were achieved by offsetting the increased use of ambulatory and home care services by reduced use of hospitals (12,32). HMOS that owned and operated ambulatory clinics, home health agencies, hospitals, and nursing homes show the most marked shift away from institutional services (32,54). A new model combining acute and long-term care services is the social/health maintenance organization (S/HMO]. The linking of acute and longterm care provides an opportunity to capture cost savings over the whole continuum of care and encourages the least intensive level of care (32). This model is currently being developed and evaluated through the Florence Heller School at Brandeis University. Fears about the budgetary effects of waivers necessary to implement this program delayed its implementation. CONTAINING PHYSICIAN COSTS Reducing the costs of Federal payments for physician services requires reducing utilization, paying lower fees, increasing beneficiary cost-sharing, or some combination of these. Setting lower fee schedules for Medicare or constraining fee increases beyond the current requirement could reduce the number of physicians who accept assignment. Assignment means that the physician is reimbursed directly for 80 percent of the cost, and the beneficiary pays the 20-percent coinsurance. About 50 percent of physicians currently accept assignment. For nonassigned services, the beneficiary is responsible for the entire cost and can then be reimbursed by Medicare for 80 percent of allowable charges (which are usually significantly lower than the billed charges). Hence, for nonassigned services, physicians can shift the difference between allowed and billed charges to the consumer. In addition, more private cost-sharing for existing benefits under Medicare Part B, which covers physician services, has been proposed by the current Administration. Higher premiums to covera higher percentage of operating costs (48,52) as well as coinsurance rates and deductibles could also augment revenues. Higher premium costs would have less effect on reducing service utilization but would shift costs to beneficiaries and distribute them over the entire Medicare population (48). G1ncreases cannot exceed the iMedicare Economic Index. Technology and coordination of Federal health programs The potential for cost-shifting between the programs and for noncomplementary policies and incentives can affect both the cost of and access to appropriate technologies and services. For example, new computer and information technologies can facilitate coordination and improve the cost effectiveness of Federal health programs. A number of Federal programs influence the ability of those over 65 to purchase services and technology. These include cash and in-kind service benefits that are age-based entitlements and those that serve specific groups, such as the socially and economically disadvantaged, or veterans, including those over 65. From the standpoint of access to health and long-term care services and technologies, Federal and federally assisted programs
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264 Technology and Aging in America that influence the quality and distribution of services and technologies as well as private insurance benefits are also important. Federal health programs The following major programs are cited to illustrate the complex interaction of Federal programs in affecting access to health services and technologies. INCOME SUPPORT Improved socioeconomic status, reflected in higher general standards of living, and better access to health care have been associated with improved health and functional status (23,42). While Medicare provides an important subsidy for health care, the elderly still have substantial outof-pocket expenses for health services and technology. Income support programs such as Social Security and Supplemental Security Income may, therefore, affect health status and health program costs. IN-KIND HEALTH BENEFITS Medicare provides acute hospital and skilled nursing care benefits (Part A) to most persons over 65; supplementary medical insurance (Part B) for physician and outpatient services is an elective option. Medicaid, in 52 federally assisted, State-run programs, supplements this coverage for the poor, and in some States for those who are needy due to increased health care expenses. Medicaid also provides a safety net for those who require extended nursing home care. SOCIAL SERVICE PROGRAMS Social and supportive services are provided through Social Service Block Grants and Title III of the Older Americans Act. Services vary from State to State but can include homemaker, chore services, transportation information and referral, congregate meals, and home-delivered meals. VETERANS ADMINISTRATION (VA) PROGRAMS The VA provides comprehensive benefits to veterans with service-connected disability and to all veterans over 65 on the basis of need and availability of resources (public Law 91-500). Currently, many veterans choose to use private services and be reimbursed through Medicare. The number of veterans over 65 who are eligible for both VA and Medicare benefits is expected to triple (from 3.5 million to 9 million) by 1990. Applications for VA health benefits have increased significantly (the rate of increase in the number of applications per 1 ) 000 veterans was over 30 percent during fiscal year 1983) (16). Some of this increase may be due to recent changes in the Medicare program. More specific examination of the rates for veterans over 65 is needed. HEALTH SERVICES AND HEALTH RESOURCE PROGRAMS Health services and resource programs provide Federal support to the medically underserved and aid in manpower development, health planning, and community and preventive health services. Activities under these programs can affect the availability of services and technologies through health planning activities and health care expenditures. These programs interact with State-specific certificate-of-need programs that regulate the supply of certain technologies and services (e.g., institution-based home care, dialysis, therapeutic and diagnostic equipment), and particularly the supply of hospital and nursing home beds. Actions taken in any of these programs can produce unintended effects in others. Cost-shifting, changes in the number and characteristics of persons seeking services, and impaired access to services and technologies, either financially or geographically, can occur. Lack of adequate data on use and the factors that affect it often hinders efforts to evaluate potential effects of policy changes. Hospital backup The problems in delivery of long-term care that result in a patchwork of services have been discussed in chapter 7. The coordination between acute and long-term care adds further complexity, as does the interaction between public and private health and long-term care financing alternatives (discussed later in this chapter). Cost containment may create additional stresses that can result in cost shifting and, without adequate
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Ch. 8Health Care Costs and Access to Technology for Older Persons l 265 safeguards, affect the quality of care. The problem of the backup of patients in hospitals is an example. Certain policies have been effective in reducing the length of hospital stays. Utilization review quickly identifies those patients who no longer need hospital care. Because out-placement of these patients can be difficult, the Medicare provision for nursing home careinstituted to contain costsis underutilized because beds are not available. 7 The result is a large number of hospital days that are not necessary for medical reasons. The cost of these administratively necessary days (ANDs) in 1980 ($3.7 billion) was slightly greater than the amount spent on communitybased care in that year, as shown in table 22. The Medicare nursing home benefit is seldom used, Medicare pays for only about 2 percent of nursing home days of the elderly, and an average stay is 28 days compared to the allowed 100 days. Medicaid (40 percent) and private payments (58 percent) are the major sources of nursing home revenues (50). Higher quality standards, retrospective denial of claims, and difficult reg~ursing homes can selectively admit patients based on care needs and reimbursement status and thus still maintain high bedoccupancy rates. ulations related to accounting for allowable costs make Medicare participation less attractive for the limited benefits. The availability of Medicare nursing home benefits depends on: 1) existence of a skilled-level nursing facility (SNF)a function in large part of Medicaid policy; 2) Medicare participation by the SNFa function of the similarity of Medicaid and Medicare rules, certification, types of patients, and reimbursement policies; and 3) interest on the part of nursing homes in participating. Until the enactment of prospective, case-based payment, delays in nursing home placement were problems for the Federal budget, rather than for providers and patients. Nursing home users were operating at 95-percent occupancy rates and hospitals at 75-percent occupancy rates; because Medicare funding was seldom terminated, patients simply received hospital care at hospital costs after their medical condition was stabilized. New incentives have been created for hospitals to rapidly discharge patients. But no incentives have been created to encourage nursing homes to accept Medicare patients. The availability of beds for these patients is a function of the relative attractiveness of Medicare and the State Medicaid program policies, as well as care requirement for individual patients. The short supply Table 22.Formal Long-Term Care Expenditures in Hospital Care, Nursing Home Care, and Community. Based Care, by Source of Funds, 1980 Hospital patients awaiting Nursing Community nursing home placement home based Federal: Medicare . . . . . ... 1,568 455 1,042 Federal Medicaid . . . . 419 5,694 85 Federal Title XX . . . . 809 AOA . . . . . . . 724 Veterans Administration . . . 1,562 359 723 Other Federal . . . . . 104 21 135 State and Local: State Medicaid . . . . . 354 4,788 73 State Title XX . . . . . 420 Other State . . . . . 198 211 Local government . . . . 17 Private: Insurance. . . . . . ., 902 129 740 Business/philanthropy. . . 29 129 162 Consumers . . . . . 209 8,869 1,377 Total . . . . . . 5,345 20,444 6,518 SOURCE: U.S. Department of Health and Human Services, Office of the Inspector General, Long-Term Care: Serv/ce De//very Assessment, Report to the Secretary (2 VOIS.) unpublished, N. Zimlich, December 1981. For detailed explanation of estimates see Volume 11: Technical Report.
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266 l Technology and Aging in America of nursing home beds makes access highly variable and difficult in most areas (15). Current provisions of DRGs account for ANDs in that they have been factored into the base rates. No additional reimbursement will be made for patients waiting to be placed in nursing homes. Many of these patients are poor and require a great deal of care. The care requirements make them poor candidates for home care and because they are poor, they probably cannot afford private care. Careful review of appropriateness of out-placement will be required. Information technology for coordination of health programs The rapid advance of information technologies offers opportunities for better coordination of programs through more effective data collection and dissemination of information to consumers, providers, administrators, and policymakers. While information is only one element in the coordination process, it is essential in monitoring its impact and formulating policy. Chapter 6 reviewed the uses of innovative information technologies to improve patients ability to participate in their own care through education and patientheld health information. Educational technologies Financing alternatives for Medicare is the major form of health insurance for those over 65, supplemented by private (medigap insurance. Gaps in Medicare coverage for the elderly exist in preventive services, dental care, and particularly long-term care. Many of the elderly are not poor and tend to want to save for emergencies (27). The need, resources, and desire for protection imply a market for mechanisms that would provide financial protection for these older persons. Protection against catastrophic long-term care expenses has been discussed most often, but some attention to the structure of medigap insurance is underway and deserves increased attention as a means of fillcan also be applied to improve consuming behavior through helping patients choose between service and coverage alternatives. Artificial intelligence and computerasisted learning strategies can assist providers in coping with the complex problems of disease and functional disability, and can also be applied to promote efficiency in health care programs and improve strategic planning activities, Technologies such as the smart card (a magnetic information storage card) provide new opportunities to capture patient-based data on the utilization of services and their cost, Artificial intelligence can assist in analyzing information for complex resource-allocation deisions. Electronic information-sharing can improve the ability of multiple providers to act in concert to address individual and community needs. State-of-the-art data collection and analytical tools can enhance the effectiveness of utilization review for both quality of care and cost control. Confidentiality and protection against abuse must be carefully considered as new applications are developed. The design of effective administrative mechanisms that can use information effectively also requires further development before the maximum benefit of these new technologies can be achieved. health and long-term care ing benefit gaps and reducing medical care costinflation (28). Among the mechanisms proposed for accumulating resources for long-term care are a publicly supported national program, private insurance, and subsidized personal savings programs (e.g., tax-deferred savings). A compulsory national long-term care insurance program would be one way of providing comprehensive universal coverage. This approach avoids the problems of participation by only those who are at greatest risk of needing care (adverse selection). Fear of increasing inflation of health and u
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Ch. 8Health Care Costs and Access to Technology for Older Persons 287 long-term care costs and concomitantly increasing government expenditures has hindered full consideration of this approach. The need for a compulsory national insurance program is partly based on the failure of the private insurance market to provide individual coverage (33). Reasons that have been given for lack of interest of private insurers include: l l l l l l cost of coverage relative to income of target population; lack of understanding by elderly consumers of their risk and insurance needs (many think they are already protected); existence of a public safety-net for those who are poor or become poor; difficulty in predicting the cost of benefits, including lack of reliable data on which to base estimates of utilization and costs; difficulty in distinguishing between skilled nursing, intermediate care, and custodial care; and regulatory barriers. The barriers fall into two major categories technical barriers to the design of an insurance product and barriers to marketing this product. The technical barriers in designing and administering benefits are similar to the problems that face public programs that pay for long-term care. Public programs have not yet been able to contain the growth of expenditures. The problems of cost containment, price inflation, overutilization of benefits, and the inability to predict length of care and appropriate level of care are major concerns for private insurers. In addition, private insurers provide benefits that are marketable and must attract insurers who represent an appropriate balance between users and nonusers. Most existing insurance policies for long-term care are focused on nursing home care and provide only limited expansion of Medicare benefits. Some have very limited home care benefits and only a few cover levels of care below skilled nursing. One approach suggests creating a policy with an idemnity benefit (set-dollar reimbursement) of $37 per day for up to 3 years of nursing home care (27) to be marketed to those over 65. The premiums for the policy were calculated to be about $450 to $550 per year. However, insurance industry estimates of premium costs have been substantially higher. Although these premium costs would strain the health care budgets of many when added to current out-of -pocket spending, some older consumers might consider the potential benefits to be worth the extra cost. For this group it may be an attractive alternative to spending down for Medicaid eligibility. Also, premium costs could be reduced substantially if consumers purchased coverage before age 65. Benefits of additional private coverage for longterm care could accrue to both individuals and government. Such coverage could reduce the burden on Medicaid because a substantial portion of Medicaid beneficiaries were not initially poor; spending down and transferring assets have made them eligible. Tighter Medicaid restrictions on asset transfers may stimulate increased demand for private insurance protection. The existence of a personal-protection alternative could also alleviate some of the ethical and political problems in increasing the stringency of spending down and greater emphasis on tapping of family resources before becoming eligible for Medicaid benefits. Insurance regulation varies from State to State and can therefore act as a barrier to the sale of long-term care insurance. The variability in State programs makes it difficult for national companies to design and administer long-term care insurance products. Incentives for personal savings to defray the cost of future care have also been suggested. Taxdeferred savings programs for this purpose could be offered along with current tax-deferred savings programs for retirement income; the number of persons who could afford such an investment might be relatively limited, although many have purchased individual retirement accounts. The budgetary impact for such a program would have to be carefully analyzed. Three major kinds of medigap insurance policies are currently available: 1) individual policies that pay deductible and coinsurance for Medicarecovered services at Medicare rates; 2) individual
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268 Technology and Aging in America policies that pay deductibles and coinsurance based on what the insurance company determines as reasonable charges (usually higher reimbursement); and 3) group insurance policies, usually as a continuation of employee benefit plans after retirement, that provide major medical benefits as well as deductibles and coinsurance. The premium-to-benefit ratios are reasonable in most cases and relatively fair, but may duplicate Medicare coverage or each other and provide little additional protection. Since the benefits are usually determined by Medicare policy, they do not make coverage a great deal more comprehensive. Voluntary savings programs would have to provide tax savings in addition to those provided by cur*Lower group rates are expected from such insurance plans, as exemplified by group health insurance rates for persons under 65, because of lower administrative costs and better risk spreading. Findings and Health care spending has conclusions been growing and will continue to grow under present policies, but the growth of the over-65 population-particularly the over-i segmentwill increase demand for acute and long-term care services. The growth of this population group is not the main reason for the rapid escalation in health care costs, Increased costs due to inflation (even surpassing general inflation) and intensification of services have been much more significant factors; increasing costs have led to efforts to contain spending that have far-reaching implications for older persons. While most individuals over 65 can maintain functional independence, many require health care for chronic conditions that increase in prevalence with age. Spending for health services represents a major problem for the Federal Government, individuals, and families. Medicare currently provides an important health care subsidy for those over 65 but is by no means comprehensivemany necessary services that affect their health and functional status, such as dental services, eyeglasses, and hearing aids are not reimbursable. A growing problem is rent programs. Rewards for prudence such as sheltering other assets from Medicaid spenddown requirements might be included to enhance the attractiveness of such programs. A major barrier to the development of private financing mechanisms is that elderly consumers do not understand their health care risks and/or their insurance coverage (20,27). Many think they are adequately protected through Medicare and medigap insurance. The strong preference for first-dollar coverage for acute care and the high cost of such coverage may also limit the amount of money available for additional insurance or savings (27). Although the development of alternatives to government financing seems desirable in improving access to care, significant changes in attitudes and incentives of both insurers and consumers will be required for these mechanisms to become viable. the cost of long-term care for those who are disabled. Eventually, many older persons come to depend on public means-tested programs for longterm care after their personal resources are exhausted. Private financing mechanisms, including medigap insurance and private insurance for long-term care, are not sufficient to provide adequate supplemental protection. Demand for health care by older persons is influenced by physical and psychosocial factors as well as economic factors. The increased use of services by some of those in this age group may result from an increased burden of illness. The remarkable decrease in mortality in the over-65 age group has not been accompanied by a similar decrease in morbidity. Studies also indicate that older persons tend to underreport symptoms and may be more likely to delay seeking care. They attribute symptoms to just getting older. Health professionals may reinforce this behavior by not dealing adequately with functional disabilities. Recent experience in Geriatric Assessment Units found an average of thrwe correctable problems per patient; many of these problems could
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Ch. 8Health Care Costs and Access to Technology for Older Persons l 269 have been identified through a careful health history without sophisticated diagnostic tests. Costcontainment efforts to date have not been effective in controlling overall health spending. Most approaches have focused on hospital care and rate-setting. The response has been increased utilization or shifting of services to ambulatory settings or shifting costs from Federal programs to other insurers and consumers. Increasing direct consumer costs to reduce overutilization has been shown to reduce the number of persons seeking care, but not to change use patterns after a diagnosis has been made. Cavitation approaches have been most successful in encouraging the substitution of lower cost services for expensive hospital care. Recent experiments are extending the cavitation concept to include supportive social services. The coordination of services and benefits between Medicare and the State Medicaid programs, as well as among other Federal, State, and local programs that influence health care, remains a problem in access to care for the elderly. Poor coordination may even increase costs because the most appropriate services are not provided. Better coordination can increase utilization and overall costs, but can also improve the quality of care. The incremental costs and benefits of each action must be evaluated. The hospital backup problem described in this chapter is an example of conflicting program requirements and, in certain geographic areas, lack of skilled-nursing beds leading to increased costs. Shifting financial incentives through prospective payment under Medicare could affect quality of care for patients in hospitals awaiting placement in long-term care institutions. Premature discharge may result in multiple admissions and shifting of costs to home care, thereby increasing overall costs for these patients as they are cycled back and forth between inadequate community settings and the hospital. O ther reports have addressed questions related to changes in eligibility, benefits, and financing mechanisms for the existing Medicare program to cover increasing costs. Recent Congressional Budget Office reports (45,46) explore options to increase revenues or decrease outlays as well as potential schemes to tie deductibles to income. Research priorities Health services research has the potential to provide valuable information for improving the cost effectiveness of the delivery of health services. There are significant gaps in knowledge at present. Some efforts are constrained by technical problems; others are limited by the resources that have been allocated for this purpose. Many of the questions have not been adequately studied in any age group. In other areas, persons over 65 have been excluded from the study population (e.g., The Rand Health Insurance Study). Results from the community-care demonstration activities and the 2176 waiver programs may provide useful information for directing Federal policy. Additional information is needed in the following areas to direct Federal policy on containing health care costs and improving health care and supportive services for older persons: l l l l l l l l l l l factors affecting the use of health and social services by older persons, the effect of cost-sharing on the use of services by and the health status of older persons, evaluation of economic incentives on provider-prescribing behavior, effectiveness and cost effectiveness of alternative strategies for the care of chronic disease and functional impairments, evaluation of alternative strategies for coordinating services and benefits, cost effectiveness of alternative quality-assurance mechanisms, development of methods to effectively educate older consumers in the prudent use of health services, development of improved health-outcome measures for older persons, exploration of methods to apply capitationpayment approaches to multi-provider systems, development of better assessment tools to identify health and social service needs, and refinement of case-mix measures based on severity of illness for patients with multiple diagnoses.
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. 270 l Technology and Aging in America Congressional issues and options ISSUE 1: Should Congress strengthen quality assurance mechanisms for health care services because of the potentially adverse effects of cost containment? Options: 1.1 1.2 1.3 1.4 1.5 Congress could strengthen the requirements for review of quality care. Congress could establish a monitoring system to identify adverse patient outcomes that maybe attributable to reductions in level of care and mandate the Prospective Payment Commission to evaluate the implications. Congress could require refinement of the DRGs according to age group (as a proxy measure for severity of illness) or other surrogate measures for severity of illness or the presence of multiple diagnoses. Congress could mandate making information on care and its consequences more accessible to patients, including requiring a patient ombudsman in hospitals. Congress could require that HCFA have applications for Professional Review Organizations reviewed by outside experts to assure adequate plans for monitoring quality of care. While incentives to reduce the number and types of services may be effective in encouraging more prudent and economical plans of care, these incentives may also lead to skimping for heavy-care patients. Older patients are more likely to require more intensive services and longer periods for recovery. Current reimbursement policy recognizes this in two ways: 1) it provides higher rates of reimbursement for patients over 70, and 2) provides for quality of care reviews through Professional Review Organizations (PROS). However, because analyses were performed on the total hospital population, significant differences between age groupings may have been obscured. Since both the payment system and quality assurance mechanisms are not yet fully implemented, their effectiveness cannot be evaluated. But the proposed regulations and administrative structures should be evaluated for adequate quality-assurance safeguards. The data that will be necessary to guide future policy decisions must also be considered. Options 1.1 and 1.3 imply action before the current system is implemented. The age break of 70 years was identified empirically. Option 1.2 would provide a system to identify problems if they occur. Option 1.4 would enhance the patients ability to avoid situations that could place him in jeopardy. Option 1.5 would provide additional assurance that quality of care as well as cost of care considerations are adequately represented in PRO functions. All of the proposed options would increase the cost of quality-assurance programs, but savings could also accrue from the prevention of complications. ISSUE 2: Should Congress act to increase coordination of Federal health and social service programs and to increase liaison with State-run programs to avoid unintended interpr0gram cost shifting? Options: 2.1 2.2 2. 3 2.4 2. 5 2. 6 Congress could establish additional Federal-level coordinating mechanisms. Congress could consolidate Federal agency and/or program responsibilities. Congress could delegate responsibility for coordination of Federal programs to States and localities. Congress could establish a client-based information system so that total per capita spending can be monitored on a representative sample of beneficiaries. Congress could encourage the dissemination of information to individuals and strengthen coordination through enhanced consumer decisionmaking. Congress could provide increased support for existing coordination efforts through the Administration on Aging, the Area Agencies on Aging, and State-run health programs. Current efforts aimed at coordination have not eliminated conflicting program requirements and regulations. The financial impacts of lack of coordination are largely unknown, but cost shifting
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Ch. 8Health Care Costs and Access to Technology for Older Persons 271 between Federal programs and between Federal and State programs is known to occur. Enhanced coordination could occur at the Federal level (options 2.1 and 2.2), at the State and local level (option 2.3), or at the individual patient level (option 2.5). Better information on the use and costs of services provided by all health and social services (option 2.4) could lead to better planning, but would introduce higher costs of data collection and could raise problems related to confidentiality of information. Increased activity through existing structures (option 2.6) could be effective but more attention to linkages in certain areas (e.g., housing programs and Veterans Administration programs) seems appropriate. Better coordination could reduce costs through the provision of more appropriate services but could also increase demand for services overall and thereby increase total costs. ISSUE 3: Should Congress stimulate coverage for preventive services, long-term care, and function-enhancing technologies as a way of substituting lower cost services? Options: 3.1 3.2 3.3 3.4 3.5 Congress could increase benefits for prevention and treatment of chronic disorders in addition to current acute care benefits. Congress could increase benefits for prevention and treatment of chronic conditions and limit program liability for acute care services. Congress could establish additional optional coverage through social insurance. Congress could encourage additional optional coverage by creating incentives for private insurance coverage for these services. Congress could provide incentives for personal accumulation of resources for additional benefits (e.g., tax-deferred savings). The addition of benefits to the Medicare program (option 3.1) or restructuring benefits (option 3.2) could lead to a less functionally dependent older population. Little evidence exists on whether this would lead to cost savings. In the short run, costs would likely increase. The provision of other types of optional coverage (options 3.3 and 3.4) is another approach to providing additional benefits. Technical, marketing, and regulatory barriers have inhibited private insurers development of appropriate mechanisms to distribute risks. Social insurance schemes would likely require additional Federal resources. Personal accumulation schemes (e.g., tax-deferred savings plans, home-equity conversion) have been proposed by some (option 3.5), but these would be most effective for moderate and upper income persons. Alternative methods for the poor and near-poor would therefore be required if equity of access ISSUE 4: is to be maintained. Should Congress act to alleviate the number of patients in hospitals waiting for discharge to lower levels of care? Options: 4. I Congress could make Medicare and Federal @de4.2 4. 3 4.4 4.5 lines more consistent to increase the number of beds available for recuperation of Medicare patients. Congress could relax legislative restrictions for designation of swing beds (classifying unused hospital beds as skilled-nursing beds) in hospitals. Congress could exempt hospitals from certificateof-need requirements for adding home health services. Congress could encourage more active dischargeplanning efforts. Congress could encourage the building of additional skilled-nursing beds in shortage areas. Making more Medicare nursing home beds available (options 4.1, 4.2, and 4.5) would increase the use of this benefit, thereby increasing program costs. Some savings from a reduction of hospital payments could occur in those cases where extended lengths of stay produce outlier payments (payments in addition to DRG reimbursement for extremely long stays). Also, patients requiring intense community services because of lack of informal support might be cared for more economically. Better access to home and community services (options 4.3 and 4.4) could reduce pressure and outlier costs for hospitals but would increase the cost of home care benefits.
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272 l Technology and Aging in America Chapter 8 references 1. Anderson, W. F., The Prevention of Illness in Old Age: The Rutherglen Experiment in Medicine in Old Age, Proceedings of a Conference Held at the Royal College of Physicians, London (London: Pitman, 1966). 2. Becker, M. H., Correlates of Individual Health-Related Behaviors, hledical Care 15(supplement):2746, 1977. 3. Besdine, R. W., Levkoff, S., and Wetle, T., Health and Illness Behaviors in Elderly Veterans, paper prepared for the Harvard Conference on Veterans Administration/Community Resources and the Elderly Veteran, October 1983, 4. Brody, E. M., and Kleban, M. H., Physical and Mental Health Symptoms of older People: Who Do They Tell? J. Am. Ger. SW. 29:442-449, 1981. 5. Brook, R. H., Ware, J. E., Rogers, W. H., et al., Does Free Care Improve Adults Health? Results From a Randomized Trial, iV. Eng). J. Med. 309(23): 1426-1434, Dec. 8, 1983. 6. Buckles, S., The High Cost of Healing (New York: Joint Council on Economic Education, 1974). 7. Callahan, J. J., A Systems Approach to Long-Term Care, Reforming the Long-Term Care Delivery System, J. J. Callahan and S. S. Wallach (eds.) (Lexington, MA: D. C. Heath & Co., 1981). 8. Costa, P. T., and McCrae, R. R., Somatic Com9 10 plaints in Males as a Function of Age and Neuroticism: A Longitudinal Analysis, J. Behav, Med. 3:245-257, 1980. Davis, K., Medicare Reconsidered, paper prepared for the Duke University Medical Center Seventh Private Sector Conference on the Financial Support of Health Care of the Elderly and the Indigent, March 1982. Davis, K., Health Implications of Aging in America, paper prepared for the Conference on the Impact of Technology on Long-Term Care, Office of Technology Assessment and Project HOPE, Inc., February 1983. 11. Demkov;ch, L., Medicare on the Critical List--Can 12 Congress Plug a $200 Billion Gap? National Journal 1580-1585, July 30, 1983. Diamond, L. M., and Bernan, D, E., The Social/ Health Maintenance Organization: A Single Entry, Prepaid, Long-Term Care Delivery System, Reforming the Long-Term Care Delivery System, .J. J. Callahan and S. S. Wallach (eds.) (Lexington, MA: D. C. Heath & Co,, 1981). 13. Douglas, C., and Cole, K., The Supply of Dental Manpower in the United States, J. Dent. Educ.: 330-348, JuIy 1979. 14. Fisher, C. R., Differences by Age Group in Health Care Spending, Heahh Care Finan. Rev. 65-90, spring 1980. 15. Freeland, M. S., and Schendler, C. E., National Health Expenditure Growth in the 1980s: An Aging Population, New Technologies and Increasing Competition) Health Care Finan. Rev. 4(3):1-38, March 1983. 16. Goldschmidt, P., Director of Health Services Research and Development Service, Veterans Administration, personal communication, Washington, DC, 1984. 17. Jurgovan & Blair, Inc., Summary of Observations, 18 Medicare/HMO Demonstration Project, HCFA contract No. 500-81-0017, Washington, DC, November 1981. Kane, R. L., Kane, R. A., and Arnold, S. B., Prevention in the Elderly: Risk Factors, paper prepared for the Conference on Health Promotion and Disease Prevention for Children and Elderly, Foundation for Health Services Research, Sept. 16, 1983. 19. Kennie, D. C., Good Health Care for the Aged) J.A.M.A. 249(6):770-773, Feb. 11, 1983. 20. Lambert, Z. V., Elderly Consumers Knowledge Related to Medigap Protection Needs, J. Consumer Aff, 2:434-451, 1980. 21. Link, C. R., Long, S. H., and Settle, R. F., Cost Sharing, Supplementary Insurance, and Health Services Utilization Among the Medicare Elderly, Health Care Finan. Rev. 2:25-31, fall 1980. 22. Litman, T. J,, Health Care and the Family: A 23 24 25. Three-Generational Analysis, Medical Care 9:67, 1971. Long, S. H., Settle, R. F., and Link, C, R., Who Bears the Burden of Medicare Cost Sharing?, inquiry 19:222-234, fall 1982. McClure, W., GMP: When You Offer People a Free Lunch, They Dont Eat at McDonalds, They Go To the Ritz, Across the Board 46-49, September 1983. Mechanic, D., Medical Sociology, 2d ed. (New York: Free Press, 1978). 26. Medicus Systems, A Review and Evaluation of Health Manpower Productivity, Washington, DC, 1980. 27. Meiners, M. R., Private Coverage of Services Not Covered by Medicare: The Case for Long-Term
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Ch. 8Health Care Costs and Access to Technology for Older Persons 273 Care Insurance, paper prepared for IIOth Annual Meeting of the American Public Health Association, INovember 1982. 28. Meiners, M. R., National Center for Health Services Research, personal communication, Washington, DC, 1984. 29, Millenson, L. J., Increasing Demand for Dental Care: Motivating New Behavior, Gen. Dent. 20-28, October 1980. 30. Newhouse, J. P., et al., Some Interim Results From a Controlled Trial of Cost-Sharing in Health Insurance, N. Engl. J. Med. 305:1501-1507, 1981. 31. Piktialis, D. S., and Callahan, J. T., Organization 32, 33. of Long-Term Care: Should There Be a Single or Multiple Focal Points for Long-Term Care Coordination, paper prepared for the Conference on the Impact of Technology and Long-Term Care, Office of Technology Assessment and Project HOPE, Inc., February 1983. Piktialis, D., and MacAdams, M., Experiments and Demonstrations in Sharing and Coordination, paper prepared for the Harvard Conference on Veterans Administration/Community Resources, and the Elderly Veterans, October 1983. Pollak, W., The Financing of Long-Term Care: 34. 35, 36. 37 < Practices and Principles, paper prepared for the Conference on the Impact of Technolo~~ on LongTerm Care, Office of Technology Assessment and Project HOPE, Inc., February 1983. Powers, E., Funding Coverage and Reimbursement for Home Health, OTA Memorandum, July 11, 1983. Relman, A. S., Health Is Not an Ordinary Article of Commerce Like a Pair of Shoes, Across the Board 54-56, September 1983. Schneider, E. L., and Brody, J. A., Aging, Natural Death and Compression of Morbidity: Another View, N. Engl. J. Med. 309:854-856, 1983. Sloan, F. A., and Schwartz, W. B., More Doctors: What Will They Cost? J. A.M.A. 249(6):766-769, Feb. 11, 1983. 38. Somers, A. R., The Need for Review of the Medicare Benefit Package as a Major Contributing Factor to the Rise in Health Care Costs, memo prepared for OTA study of Medical Technology and Costs of the Medicare Program, August 1983. 39. Somers, A. R., Moderating the Rise in Health Care Costs: A Pragmatic Beginning, ) N. Engl. J. Med. 307: 944-947, Oct. 7, 1982. 40. Somers, A. R., Rethinking Medicare To Meet Future Needs, paper prepared for the Government Research Corp,s Seventh Annual Leadership Conference on Health Policy, Washington, DC, June 1982. 41. 42. 43. 44. 45. 46. 47. 48. 49, 50. Stenback, A., Kumpulainen, M., and Vauhbonen, M. L., Illness and Health Behavior in Septagenerians, Gerontologist 33:57-61, 1978. Taubman, P. J., and Sickles, R. C., Supplemental Social Insurance and the Health of the Poor, Working Paper No. 1062, National Bureau of Economic Research, Inc., Cambridge, It!A, January 1983. U.S. Congress, Congressional Research Service, Hospita] Cost Containment, Issue Brief No. IB82072, 1983. U.S. Congress, General Accounting Office, Medicaid and Nursing Home Care: Care Increases and the Need for Ser\ices Are Creating Problems for the States and the Elderl-v, GAOIIPE 84-1, Washington, DC, 1983. U.S. Congress, Congressional Budget Office, Changing the Structure of Medicare Benefits: Issues and Options, March 1983. U.S. Congress, Congressional Budget Office, Containing Medical Care Costs Through Market Forces, May 1982. U.S. Congress, Office of Technology Assessment, Abstracts of Case Studies in the Health Technology Case Studov Series, OTA-P-225 (Washington, DC: U.S. Government Printing Office, November 1983). U.S. Congress, Office of Technology Assessment, Medical Technology and Costs of the Medicare Program, OTA-H-227 (Washington, DC: U.S. Government Printing Office, July 1984). U.S. Congress, Office of Technology Assessment, Diagnosis Related Groups OJRGs) and the Medicare Program: Implications for Medical Technologv A Technical Memorandum, OTA-TM-H-17 (Washington, DC: U.S. Government Printing Office, July 1983). U.S. Department of Health and Human Services, Office of the Inspector General, Long-Term Care: Service Delivery Assessment, Report to the Secretary, unpublished, December 1981. 51. U.S. Department of Health and Human Services, 52 53 Health Care Financing Administration, Medicare: Use of Home Health Services, 1980, Washington, DC, 1984. U.S. Government, Executive Office of the President, Office of Management and Budget, Budget of the United States Government, Fiscal Year 1984 (Washington, DC: U.S. Government Printing Office, 1983). U.S. Senate, Special Committee on Aging, The Future on Medicare, Hearing, 98th Cong., 1st sess., Apr. 13, 1983 (Washington, DC: U.S. Government Printing Office, 1983).
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274 Technology and Aging in America 54. Weil, P., Comparative Costs to the Medicare Profor the Conference on the Impact of Technology grams of Seven Prepaid Group Practice Plans, A4ilon Long-Term Care, Office of Technology Assessbank A4emoriaf Quarterly 339-365, summer 1976. ment and Project HOPE, Inc., February 1983. 55. Weissert, W. G., Innovative Approaches to Long56. Williamson, J., Old People and Their Unreported Term Care and Their Evaluation, paper prepared Needs, Lancet 1:1117-1120, 1964.
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Chapter 9 Technology, Housing, and the Living Environment of the Elderly
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Contents Pag e Introduction . . . . . . . . . . . . . . . . 277 Demographic Influences . . . . . . . . . . . . . 277 Changes in Households . . . . . . . . . . . . . 277 Marital Status . . . . . . . . . . . . . . . 278 Living Arrangements . . . . . . . . . . . . . 280 Housing Status of the Older Population . . . . . . . . . . 282 Tenure of Elderly Households . . . . . . . . . . . 282 Housing Deficiencies . . . . . . . . . . . . . 283 Housing Expenditures . . . . . . . . . . . . . 285 Recent Changes in Expenditures and Deficiencies. . . . . . . . 286 Housing and Environmental Fit of the Impaired Elderly . . . . . . 288 Age, Impairment, and the Housing Environment. . . . . . . . 288 Impairment and Disability. ...,.. . . . . . . . . . . . 288 Prevalence of Disability . . . . . . . . . . . . . 290 Evolution of Federal Housing Policy for the Elderly. ......,, . . . . . 294 General Housing Policy and Federal Programs . . . . . . . . 294 Federal Housing Programs for Older Americans . . . . . . . . 294 Impact of Federal Housing Programs on the Elderly . . . . . . . 300 The Macro-Environment of Housing for the Elderly . . . . . . . 301 Characteristics of Elderly Single-Family Housing . . . . . . . . 301 The Micro-Environment of Housing for the Elderly . . . . . . . 315 Technological Applications in the Home . . . . . . . . . 315 Concluding Remarks . . . . . . . . . . . ..., . . 324 Research Priorities . . . . . . . . . . . . . . 325 Issues and Options . . . . . . . . . . ..., . . . 325 Chapter 9 References . . . . . . . . . . . . . . 327 Tables Table No. Page 23.All Households and Households With an Elderly Head: United States, 1950-82 . 278 24. Marital Status of the Population Aged 65 and Over, by Age and Sex: United States, 1970 and 1982 . . . . . . . .. . . . . . . 279 25. Living Arrangements of the Population Aged 65 and Over, by Age and Sex: United States, 1970 and 1981 . . . . . . . . . . . 280 26. Elderly Headed Households, by Tenure: United States, 1979 and 1982 . . . 282 27. Housing characteristics of Elderly Headed Households: United States, 1979 . 283 28. Deficiency Criteria for Physically Inadequate Housing: United States, 1981 . . 284 29. Incidence of Housing Deficiencies and Excess Expenditures: United States, 1979 285 30. Persons Needing Help in Basic Activities of Daily Living and Persons in Nursing Homes, by Selected Ages: United States, 1977 . . . . . . . . 291 31 .Noninstitutionalized Persons With Activity Limitation Due to Chronic Conditions, and Persons Dependent in Selected Basic Activities of Daily Living (ADLs), by Age: United States, 1977 . . . . . . . .; . . 291 32. Mopility Limitations Due to Chronic Conditions Among Noninstitutionalized Persons, by Age: United States, 1977 . . . . . . . . . . . . 292 33, Summary of Housing Units for the Elderly Currently Subsidized by Selected Federal Housing Programs: United States, 1981-82. . . . . . . . . 296 Figure Figure No. Pa @ 27. Schematic Diagram of the Competence and Environmental Press Model: Behavioral Outcomes of Person-Environment Interaction . . . . . . . . 289
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Chapter 9 Technology, Housing, and the Living Environment of the Elderly Introduction Major demographic and technological changes in housing and living arrangements of older Americans in the recent past signal new challenges for Federal housing policy in the future. Understanding the effects of these trends for the elderly is particularly relevant because of the growing importance of the residential environment as persons age. Questions of safety, security, satisfaction with life, and maintenance of independence are only a few of the issues that have a bearing on Federal policy in housing, technological change, and the elderly (see, e.g., 43). Moreover, as the elderly population itself ages, greater challenges arise for assuring that the very old are not only adequately housed but also properly served (74). Issues surrounding (housing and the elderly go beyond the physical dwelling itself. The status of older persons in terms of their housing and living arrangements is intricately related to their socioeconomic, marital, familial, psychological, and physical status. Whether directly or indirectly, Federal housing policy affects central aspects of the older individuals well-being. Demographic influences Changes in households Although it is clear that ever larger numbers and proportions of people are surviving to age 65 and beyond, the composition of this population must be considered when assessing the housing needs of the elderly. Among the key factors are age, sex, marital status, and living arrangements. This chapter discusses the demographic, social, and technological developments that have helped create the current Federal role in housing policies affecting the elderly. It includes a synopsis of the major Federal housing programs that have an impact on the older population, their relative contribution to providing or subsidizing housing for this special group, and their current status or level of activity. It also provides an analysis of potential future needs in Federal housing policy and in achieving the explicit goal of assuring safe and decent housing for all persons and families, as first stated in the Housing Act of 1937. More recent Federal legislation sets out the special nature of the housing needs of the elderly, especially the desirability of coordinating housing with a variety of community services. Increasingly, the emphasis is on maximizing and maintaining the residential independence of older persons, particularly those who are frail, disabled, poor, and/or living alone. Technological innovations in residential settings and development of new service delivery systems, ranging from low to high technologies, are already being applied toward these goals. It is also important to distinguish between persons and households as demographic variables. The household is the best unit of analysis for discussing housing concerns, since it is the consuming entity and reflects the actual number of dwelling units that are occupied. During the decade of the 1970s, the over-65 population grew by 28 percent, to 25.7 million persons. In contrast, the rate of growth for the total population was only 277
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. 278 l Technology and Aging in America 11 percent; this age-specific growth differential has existed for most of this century. (See ch. 2 for a complete discussion of these trends.) Moreover, during the 1970-80 period the aging of the older population itself was shown by the 33-percent increase in the over-75 population, and the even more marked increase of 61 percent in persons over 85. This impressive growth in numbers of persons only forms the underlying basis for assessing housing demand by the elderly. The change in numbers of households is more relevant. According to the Annual Housing Survey of the Bureau of the Census, by 1980 there were 16.5 million households maintained by a person over 65. This figure is about one-fifth of all U.S. households, a proportion that has been increasing since world War II, Thus, while the number of older persons doubled between 1950 and 1980, the number of households headed by older persons increased even moreby a factor of 2.5 (from 6.4 million to 16.5 million). Table 23 shows these trends from 1950 to 1982. Table 23 also shows the variability of decennial percent changes in both total and elderly households, which reflects the wide variation in fertility rates of earlier decades. The low fertility rates of the 1930s lessened the demographic potential for future household formation. The cohort born between 1930 and 1934 exerted relatively little influence on household formation in 1959 (i.e., when these individuals reached age 25 to 29, a major life-cycle stage for household formation). Similarly, when this cohort reaches age 65 to 69 Table 23.All Households and Households in 1999, they will add a relatively small number and proportion to the total of elderly households. Therefore, despite the higher decennial rates of growth in elderly households since 1950, the rate of increase has both varied and slowed. In 1950, fewer than 15 percent of U.S. households were headed by elderly persons; this figure rose to 19.6 percent in 1970 and to almost 21 percent in 1982. The earlier increases in elderly households were largely due to the increased likelihood of older persons maintaining independent households and the general trend toward greater survivorship in old age. The trend in household growth among the elderly is expected to slow during the rest of this century (66). Issues related to quantity or supply of housing for older persons are likely to be less crucial than questions regarding its financing, maintenance, and distribution. Also, new issues regarding the integration of housing policy with public services, especially long-term care, will become increasingly important. Marital status Increased emphasis on quality of the living environment and service coordination is predicated on the differences in types of households within the older population. Age-based differences in marital status and living arrangements of the older population have remained quite stable during the last two decades, but sex-based differences have changed somewhat. Table 24 shows the diswith an Elderly Head: United States, 1950-82 (numbers In millions) a All households Households with elderly head b Total Percent change Percent change Percent Year number preceding decade Number preceding decade of total 1950 . . . . 43.4 % 6.4 /0 14.70/0 1960 . . . . 52.6 21.2 9.4 46.9 17.9 1970 . . . . 62.9 19.6 12.3 30.9 19.6 1980 . . . . 80.7 28.3 16.5 34.1 20.4 1982 . . . . 83.5 17.3 20.7 aFigUres are for the noninstiturionalized pOpUht)On. bEkj@y hewj of household Is a person aged 65 of ~def. SOURCE: Data derfved from U.S. Bureau of the Census, Currant Populat(orr Reports, Series P-m, Nos. 361 and 366, and Series P-25, No. 605; Current Housing f?eporfs, Annual Housing Survey, 1960.
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Ch. 9Technology, Housing, and the Living Environment of the Elderly 279 Table 24.Marital Status of the Population Aged 65 and Over, by Age and Sex: United States, 1970 and 1982 (percent distribution) Male Female Year and marital status Age 65+ Age 65-74 Age 75+ Age 65+ Age 65-74 Age 75+ 1970: 8 Never married . . . 7.5% 8.00/0 6.60/0 7.7% 7.80/o 7.5% Married, spouse present . 69.9 75.2 60.4 33.9 43.5 19.1 Married, spouse absent . 3.2 2.8 3.9 1.7 1.6 1.9 Widowed . . . . 17.1 11.3 27.7 54.4 44.0 70.3 Divorced . . . . 1,3 2.7 1.4 2.3 3.0 1.3 Total . . . . 100.0 100.0 100.0 100.0 100.0 100.0 1982: b Never married . . . 4.4 4.9 3.3 5.6 5.3 6.1 Married, spouse present . 77.6 81.5 70.2 38.5 49.3 2.4 Married, spouse absent . 2.4 2.5 2.3 1.7 2.0 Widowed . . . . 12.4 7.5 21.7 50.4 38.3 d:: Divorced . . . . 3.2 3.6 2.4 3.8 5.1 1.8 Total . . . . . 100.0 100.0 99.9 100.0 100.0 100.0 algro figures are based on total civilian resident Population. bl~z figures Me b~d On total civilian resident population, excluding persons Who are lnstltutlonallzd. SOURCE: U.S. Bureau of the Census, Current Population Fiepms, Series P-20, Nos. 212 and 3S0. tribution of marital status within the older population by age and sex in 1970 and 1982. Most noticeable are the similarities within the sexes and the age groups for both years. Although not shown, data for 1960 had similar relative differences. Those differences in marital status that do exist are found between the sexes and age groups within either year. For example, although widowhood is perceived as an increasing problem for older women, the proportion widowed actually declined between 1970 and 1982. For all older women, widowhood was 4 percentage points lower, at 50.4 percent in 1982. To the extent that widowhood reduces quality of life in older age (2,48,49), the overall status of older women has improved slightly. By a similar difference of 4.5 percent, the proportion of women over 65 who are married with spouse present has increased to 38.5 percent. In 1982, 12.4 percent of older men were widowed, a proportion one-fourth that of their female counterparts. Over three-fourths of the men were married with spouse present. Even for men over 75, 70 percent were still in that category, compared with only 22 percent of women in that age group. Thus, while recent trends have been toward increases in proportions married for both sexes and all older age groups, the lifestyle advantage for older men has actually improved proportionally. But increasing numbers of older women are becoming widowed, especially when compared to men. Between 1970 and 1982 the number of widowed older women rose by 1.7 million (to 8.1 million), even though the proportion in that category was 4 percentage points lower. In contrast, there has been an actual decline in the number of widowed older menfrom 1,42 million in 1970 to 1.34 million by 1980. The proportion of all widowed older men was almost 5 percentage points lower by 1982 (90). Thus, the numbers of widowed older women, while increasing, are doing so at a decreasing rate. There has been no significant change in numbers of older men widowed during the last 12 years. Because life expectancies at birth, at age 65, and even at age 85 are higher for women, their increase in total numbers has been greater, thereby enhancing both the positive and negative changes that have occurred in their marital status. The growth in the total number of older men was almost entirely comprised of those who were IThe total population of older males grew by 2.1 million between 1970 and 1982, while the total female older population gained almost twice that amount (3.9 million) during the same period.
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280 l Technology and Aging in America married with spouse present. Almost 8 percent more older men were in this category in 1982 than in 1970, a gain of 2.2 million. In contrast, the additional 2 million women who were married with spouse present represented only onehalf of the total increase in older women from 1970 to 1982. The other 1.9 million were either never married, widowed, divorced, or separated. Various factors account for these differences. As noted above, ageand sex-specific differences in life expectancy continue to have an impact on the sex composition of the older population, although their respective rates of increase have slowed. Moreover, husbands are, on average, 3 to 4 years older than their wives, thereby increasing the risk of female widowhood by increasing the average age differential between spouses. Finally, even among married older persons, who have higher life expectancies in general, wives still have notably higher life expectancies than husbands (66). Living arrangements These demographic influences and their social impacts are also seen in the living arrangements of the older population. Data for 1970 and 1981, shown in table 25 (comparable 1982 data are not yet available), indicate the changes inand the differences betweenthe living arrangements of older men and women. A notable change since 1970 has been the dwindling proportions of both men and women who live with someone other than a spouse, especially those over 75. The proportion of all older men living with someone else dropped from 14.2 to 9.1 percent. Even more dramatic is the decrease in older women living with someone else, which fell from more than 27 percent in 1970 to less than 20 percent in 1981. The largest decrease was for women over 75: from more than one-third to less than one-fourth. The likelihood that very old women will be living alone has thus increased substantially since 1970. In 1981, 79 percent of men 65 to 74 were living with a spouse, compared with only 47 percent of women in that age group (who also showed an increase since 1970, but a less dramatic increase than for men). A more profound difference is found for the over-75 population. Almost two-thirds of these men lived with their spouses in 1981, but fewer than one-fifth of all women over 75 did so. The effect of differences in life expectancy between the sexes on the living arrangements of the elderly is, therefore, much greater for the very old population. Among all older women, almost 39 percent lived alone in 1981, 5 percentage points higher than in 1970. The comparable figure for older men was Table 25.Living Arrangements of the Population Aged 65 and Over, by Age and Sex: United States, 1970 and 1981 (percent distribution) a Male Female Year and living arrangement Age 65+ Age 65-74 Age 75+ Age 65+ Age 65-74 Age 75+ 1970: In households . . . 95.5% 96.40/0 93.7% 95.0% 97.6% 91.1% Living alone . . . 14.1 11.3 19.1 33.8 31.6 37.0 Spouse present. . . 69..9 75.2 60.4 33.9 43.5 19.1 With someone else . 11.5 9.9 14.2 27.4 22.4 35.0 Not in households . . 4.5 3.6 6.3 5.0 2.4 8.9 Total . . . . . 100.0 100.0 100.0 100,0 100.0 100.0 1981: In households . . . 96.2 97.9 92.9 93.8 97.8 88.3 Living alone . . . 13.8 11.1 19.0 38.8 34.2 45.1 Spouse present . . 74.1 79.0 64.8 35.5 47.3 19.3 With someone else . 8.3 7.8 9.1 19.4 16.2 23.8 Not in households . . 3.8 2.1 7.1 6.3 2.2 11.7 Total . . . . . 100.0 100.0 100.0 100.0 100.0 100.0 aF19Ure$ ~e for the total clvlllan resident Population. SOURCE: Siegei, 1983; baaed on data from U.S. Bureau of the Census, Current Popu/at/on Repofis, Series P-20, various nos.
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Ch. 9Technology, Housing, and the Living Environment of the Elder/y l 281 less than 14 percent. More than four times as many women as men over 65 lived alone in 1981 (i.e., more than 6.0 million women v. fewer than 1.5 million men). Women over 65 also have higher risk of institutionalization than their male counterparts. While the proportion of all older men who are not in households 2 declined from 1970 to 1981 to 3.8 percent, the proportion of older women in that group increased to 6.3 percent. As in the case of widowhood, women face a much greater risk of institutionalization at the oldest ages (75 and over) and the difference has been increasing; their rate of institutionalization increased from 8.9 percent in 1970 to 11.7 percent in 1981. This change is correlated with the growth toward a much higher proportion of very old women who live alone (45 percent in 1981 v. 37 percent in 1970). Elderly women who are likely to be institutionalized are also likely to be very old, widowed, living alone, and poor. Although these factors contribute to the likelihood of functional dependency and institutionalization (99), an encouraging trend is the recent decline or leveling in the proportion of both men and women aged 65 to 74 who are institutionalized. This change can be partly explained by the recent increases in proportions married and living with their spouses. The most recent trends in both marital status and living arrangements among elderly men and women thus indicate four general changes: 1 There is an increase in the proportions of older men and women who are married and living with their spouses. These trends are equally evident for both young-old and veryold males, as well as for young-old females. For very-old women, no change in proportion who are married with spouse present has occurred during the last decade. 2. Smaller proportions of older men and women, across all age subgroups, are living with 3. 4. someone other than their spouses. This trend is particularly evident among very-old women, Institutionalization rates for the younger subgroup of older persons (the young old) have decreased, especially for elderly men. But among the very old, these rates have increased, notably so for women. The proportion of older men who live alone has remained constant, but the proportion of older women living alone has markedly increased. Most of these trends are expected to persist in the foreseeable future, Between 1980 and 1995 little change is anticipated in the proportions of elderly men and women who are either single or married and living with a spouse. Nor are the proportions of older men who live alone or with someone other than a spouse expected to change significantly (89). The one clear change expected over the next 15 years is an increase in the proportion of socalled nonfamily households among elderly women, i.e., those who live alone or with nonrelative. Corresponding to this shift will be a decline in the proportion of households headed by elderly women living with other relatives (from more than 54 percent in 1981 to 50 percent by 1995), In general, over 55 percent of all households maintained by elderly persons in 1995 are expected to consist of persons living alone or with nonrelative) four-fifths of which will be headed by women (89). The changes are more dramatic for the o\wr75 population. In 1981, two-thirds of all households headed by a person over 75 were single-person or nonfamily households, which are projected to remain at that level through 1995. Women are expected to comprise almost 84 percent of these single and nonfamily households in the over-75 population. [he category not in househokk corresponds to in group quarters, which includes the institutionalized, of whom 96 percent am in nursing homes and the remainder in other types of group quarters, 3Bureau of the (;ensus estimates and projections for nonfanlll) households do not inrlud~> persons who are iIlstitLltio[~iilize(i
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282 Technology and Aging in America Housing status of the older population These demographic trends among the elderly indicate the need for new approaches by the Federal Government to the housing needs of the older population. The data reviewed here underscore the dual growth in both family units and singleperson elderly households since World War II. This growth in U.S. households maintained by elderly persons was accompanied by increases in the numbers and proportions of older persons in institutions (i.e., nursing homes and personal care homes, including domiciliary and board and care facilities). These institutions and their residents are not included in the count of households, but they currently house approximately 1.4 million elderly residentsmore than 2% times their number in the mid1960s. The following sections are restricted to the housing situation of the noninstitutionalized elderly. 4 Tenure of elderly households Among the 16.5 million elderly households in 1980, approximately 12.3 million were owneroccupied and only 4.2 million were renter-occupied. This relatively high rate of homeownership among the elderly has been increasing since World War II. By 1970 over two-thirds of all elderly households were owned; by 1979 the proportion had increased to almost 72 percent (tables 26 and 27). Included in the growth of elderly homeownership is an increase in the prevalence of manufactured or mobile housing units. By 1980 over one-fifth of all elderly homeowners resided in this type of housing (56). The growth in ownership during the 1970s has continued during the 1980s. By 1982 the number of elderly-headed households reached 17.3 million, of which 76 percent (13.2 million) were owner-occupied and 24 percent (4.1 million) were renter-occupied (90). Thus, not only did the number of elderly-headed households increase by 1.1 million units in just 3 years, but the entire net growth was in owner-occupied households. The same period showed a net decrease in elderly %ee chs. 2 and i for details on t |