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The epidemiology of dementing disorders

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Title:
The epidemiology of dementing disorders
Creator:
Cross, Peter S.
Gurland, Barry J.
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U.S. Congress. Office of Technology Assessment
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English
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70 pages.

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Subjects / Keywords:
Dementia -- Epidemiology ( LCSH )
Psychiatric epidemiology ( LCSH )
Dementia -- Diagnosis -- United States ( LCSH )
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federal government publication ( marcgt )

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General Note:
This report discusses causes of the dementia, precipitating or aggravating factors, present and projected needs for people and programs to provide services to victims and their families, groups at high risk for these disorders, frequency of unrecognized or inadequately treated cases, and the costs of the disorders, public and private, economic and non-economic.

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University of North Texas
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University of North Texas
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This item is a work of the U.S. federal government and not subject to copyright pursuant to 17 U.S.C. §105.
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Y 3.T 22/2:2 M 66/2/pt.1/epid ( sudocs )

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University of Florida
OTA:
Office of Technology Assessment

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January 1986 THE EPIDEMIOLOGY OF CEMENTING DISORDERS A Report on work Performed For and Submitted to the United States Congress, Office of Technology Assessment Peters. Cross, M. Phil. Barry J. Gurland, F.R.C. Psych. The Columbia University Center for Geriatrics, Gerontology and Long-Term Care, of The Faculty of Medicine College of Physicians and Surgeons New York State Office of Mental Health New York, New York 10032

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c, ,~u"f? Introduction 'f Uses and purposes of epidemiology Elements of the prevalence survey The Dementia Syndrome ll Boundaries I/ Subtypes of dementia 13 Epidemiologic Studies 2-/ Variations in population studied Variations in case-fi 1ing Care ascertainment me\...1ods Adjusted prevalence rates Occurrence in the non-elderly Sub-types of dementia Is prevalence rising? The increasing burden of care Epidemiologic Research Recent federally supported studies Recommended studies Appendices A. Recent and on-going federally-funded studies in the epidemiology of the dementias References I J/,; .....

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... ./ LIST OF TABLES 1. Criteria for Diagnosis of Non-Specific Dementia /}._ 2. Epidemiologic Surveys Area Studied, Type of Population.Z.L. 3. 4. s. 6. 7. Sampling, Ascertainment Methods Epidemiologic Surveys: Prevalence of Severe Dementias Adjusted Estimates of Total Prevalence of Dementia in the Elderly Population Epidemiologic Surveys: Prevalence in the Non-Elderly Epidemiologic Surveys: Subtypes of Dementia United States 1958-2848: Population, cases of Dementia, Prevalence of Dementia, and Percent of Cases in Oldest Age Group '-f /,

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LIST OF FIGURES 1. Decision Tree for Diagnosis of Dementia 2. Age-Specific Prevalence Rates of Dementias Found in Various Jr Studies 3. Projected Cases of Established Dementia in the United States l(o 4. Contribution of Elderly Age Groups to Projected Increase in (/2.. Cases of Established Dementia 5. Familial Dependency Ratio (Population Aged 80+ as a '-/~ Proportion of Those 60-64) 6. Societal Dependency Ratio (Population Aged 65+ as a t.,f,?Proportion of Those 18-64)

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' INTRODUCTION The large increase in both the number and proportion of elderly in our population together with the steep increase in incidence of the dementias with increased age has resulted in sharply increased prominence of the dementias. Each new case affects most dramatically family members and friends who bear the brunt of the care, and also affects a widening circle of acquaintances and health professionals, and, in the end, becomes a matter of concern for the public who at a minimum share the large and growing public costs due to these diseases. The elderly constitute eleven percent of the national population but account for about a third of all expenditures (and about half of all public expenditures) for health care (Fisher, 1980). Studies of the community-resident elderly have repeatedly found that the demented use a large proportion of health and personal social services. Gurland et al. (1980) in a study of a probability sample of elde~ly New Yorkers living at home found that of the tenth of the sample most dependent on others for help to survive in the community, nearly half had dementia as a primary reason for this dependency. Akhtar's (1973) report of a study of community-resident elderly in Northern Scotland found that of the most dependent 3.51 of the sample, over three-quarters were demented.

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' In the Newcastle-upon-Tyne study (Kay et al., 1970) the 61 of the sample of the community-resident elderly diagnosed as demented, upon several years follow-up, accounted for over half of all time spent by the sample in residential homes and nearly a third of all hospital admissions. (This despite their considerably greater mortality during the follow-up period.) Studies of the elderly in institutions tell the same story. Over two thirds of all elderly residents in state and county mental hospitals and half of all elderly admissions have a primary diagnosis of "chronic organic brain syndrome" (Millazzo-Sayre, 1978; Meyer, 1977). Estimates of the prevalence of dementia in nursing homes range from over a third to two thirds -(German& Kramer, undated; National -ee-nter for Health Statistics, 1979; Gurland et al., 1979). Problems in the provision of care to the demented have added to these concerns. Caregivers see themselves as confronted with an unsympathetic system of medical and social supports and have formed active groups for self-help to advocate for more responsive social and medical care and for increased research. Nursing homes have been a source of concern due both to poor care in some and due to rapidly increasing costs both to individuals and government. These concerns are heightened further by the knowledge that the elderly population is growing and that the dementias will become a problem of even greater magnitude. Attempts to deal with the problem range from basic research, to treatment approaches, to attempts to ameliorate the widespread costs, be s

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they the social, psychological or economic. Here we review the epidemiological contribution to these efforts with special emphasis on the contribution to public policy making. Uses and Purposes of Epidemiology Epidemiology studies diseases_as they occur among (epi) the population (demos) seeking to describe the ocurrence and distribution of the disorder in the population and thereby to clatify the cau~ of' the disease (~acMahon & Pugh, 1970). Descriptions ot the occurrence and distribution are of great import for other scientists and for policy makers, planners, administrators and service providers. The frequency of the dementias (and of particular kinds of dementia) in the general population, in specific population groups (e.g. by age), and in particular settings may shed light on: o causes of the dementias o precipitating or aggravating factors o present and projected needs for people and programs to provide services to victims and their families. o groups at high risk for these disorders o frequency of unrecogni?.ed or inadequately treated cases o the costs of the disorders, public and private, economic and non-economic Eleruents of the Prevalence Survey

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All epidemiologic surveys seeking to describe the frequency and distribution of dementia (or some type of dementia) face in common questions dbout how the study is to be done. These questions of method are not matters of trivial detail but importantly affect the study results. Here we set out a brief overview of major considerations of method: o how the population to be studied is selected o how a 'case' of dementia is to be defined o what the information needed is to define a case and how this is to be collected o what measures of occurrence and distribution should be used Selecting the Population The prevalence survey generally covers all individuals within a geographical area. Some studies are limited to individuals at risk, (those above some specified age, say 60 or 65, below which dementias are deemed sufficiently rare). Some surveys may include only individuals living in the community (omitting individuals in acute care hospitals, or mental hospitals, or nursing homes); other studies have been of only those living in such institutions. While such studies are acceptable for some purposes, they are not useful in estimating overall prevalence since, indisputably, substantial portions of demented subjects reside both in the community and in institutions. In some instances (small communities) it may be possible for the investigators to survey every (or nearly every) individual at

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risk, that is to take a complete census. In other instances the population may be sufficiently large (in relation to study resources) that only a sample of the population can be taken and in such instances, the sample must be drawn according to (sometimes complex) known methods of ensuring that the sample truly reflects the entire population of interest. Equally important are ensuring that the study adequately assesses all individuals in the sample, not only those who are available, or cooperative, or in good health. Defining a Case There are varieties of dementia, varieties of diagnostic and classifying systems, varieties of ways of operationalizing these within an epidemiologic study. These are of great consequence and hence are discussed is some detail later. Here we mention two quite general requirements that need to be met. First, those identified by the study procedures as cases must (preferably to some known extent) be 'cases' --the case definition must be valid. Secondly, the set of procedures and definitions resulting in the identification of a case must be replicable, repeatable --case definition must be reliable. The validity of case definition in studies of dementia is especially problematic since there is no infallible method of diagnosing the most common types of dementia even under ideal conditions. There is no abolute correct standard. Furthermore, the purposes of the study may indicate the use of different standards: a study aimed at describing the service needs of the demented might well define cases by level of severity as seen in

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need for personal assistance; a study focused on possible interventions might focus case definition on the distinction between reversible dementias and the progressive dementias; an etiologic study of Alzheimer's disease would place great emphasis on accurate sub-typing of dementia. Reliability is sometimes spoken of incorrectly as a property of the diagnostic instruments (measures). While this is in part so, reliability depends as well on characteristics of the population being studied and depends critically upon sytema~ic case assessment methods and competent and motivated assessors. Assuring that methods found (e.g. in a special sub-study) to be reliable are maintained through the entire study is necessary to obtain accurate results. Measures of occurrence The usual measure of frequency used in prevalence studies is the prevalence rate which is simply the ratio of cases to the population at risk usually expressed in terms of some conventional population size (e.g. 5 per 100 or SI; 50 per 1000; 500 per 10,000). Prevalence is for a specified time period: it may be point prevalence based on the number of cases and population at one moment in time or period prevalence, the number of cases that exist or existed over one month (or year, 10 years, a lifetime, whatever). The period of time selected can make a small or large difference in the rate. For a chconic (i.e. unremitting) progressive disease, such as Alzheimer's, the difference between point prevalence and one-month prevalence would be small; whereas for, say, acute confusional states

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(typically short in duration) the difference between point prevalence and one-month prevalence could be substanital. Nearly all epidemiological studies of dementia report such prevalence rates but it is useful, at least conceptually, to view the prevalence rate as a function of two or more elementary kinds of information: the incidence rate and duration. Incidence is the number of new cases arising in the population during a specified time period; duration is the average duration of the disease from onset to termination (recovery or death). ,~

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THE DEMENTIA SYNDROME Boundaries Table 1 sets out the criteri, for the syndrome of dementia as set out by the American Psychiatric Association (1980) in its Diagnostic and Statistical Manual of the Mental Disorders (Third Edition)--the DSM-III. Each of the critieria under A to E must be fulfilled in order to reach the conclusion that a dementing syndrome is present. The left hand column is our interpretation (we rely here on Gurland and Toner, 1983. See also Small and Jarvik, 1982) of the essential features of DSM-3. of intellectual ability implies that it occurs after mature intelligence has been achieved (thus ruling out mental retardation which occurs from birth or early in childhood) and affects a broad range of cognitive functions (i.e. it is global rather than a specific defect such as language disturbance). In order to be sure that the intellectual impairment is abnormal and not one end of the normal range, it is important that the impairment is sufficient to account for a clear-cut disability in the performance of daily activities such as social or work tasks. Category C in DSM-3 contains the least satisfactory of the criteria. Some of these may be difficult to recognize (e.g. impaired judgment, personality change); some may occur in other conditions (e.g. impaired thinking and semantics may occur in schizophrenia) or be difficult to recognize in those who are poorly educated. The aphasias and apraxias occur in various II

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TABLE J. ..,titbria tor diagnosis of nonspecific dementia Essential features Global cognitive impairment Occurring after intellectual maturity Relevant disability chronologically related Depression and acute confusional states ruled out Adapted from DSM Ill A: Losa ot inttlledual ability with ~al and occupational dysfunction B: Memory impairment C: One or more of: 1) Impaired thinking, semantics 2) Impaired judgement 3) Aphasias, apraxiaS. etc. 4) Personality change 0: Consciousness not clouded E: Either: 1) Related organic cause; 2) Nonorganic mentm disorders ruled out J

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localized lesions of the brain such as might occur in strokes or with tumors. These impairments are not especially helpful in mak'ng the diagnosis but can be identified as symptoms of dementia once the diagnosis is made. The criterion under o, that consciousness is not clouded (i.e that the person is alert and. able to correctly perceive the external world and is not making supposed cognitive errors because they are delirious or stuperous), is aimed at excluding confusional states. Subtypes of Dementia The decision tree for diagnosis of dementia (Figure 1) presents a simplified scheme of how the clinical diagnosis occurs (for fuller expositions see Wells, 1977 or Roth, 1981) starting with a client who has symptoms suggestive of intellectual impairment. These symptoms include lapses of memory such as failing to recognize members of the family or close friends; disorientation such as not knowing the day, the date or the place, or as evidenced by wandering and getting lost; incompetence in carrying out the tasks of daily living (basic or instrumental activities of daily living) and consequent dependence on others; indiscrete behavior out of character for that person, disturbing behaviors such as aggression or screaming, or apathetic withdrawal. In the face of such symptoms the first decision in the branching tree of diagnosis requires an assessment of when the

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Figure 1. Decision tree for diagnosis of dementia Suggestive Symptoms -No lobat cognitive impairment g _, ) Self limiling conditions Depr8Slive Psaudodementia, Benign Senescent Forgetfulness Neuronal Acute conlusional state Associated conditions Secondary dementia I Olhar I 1 Multi-intarctl Onset recent, progressive Global cognitive impairment Neuronal disruption Dementia No associated conditions Primary dementias I I Alzheimers I

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onset of the symptoms occurred and whether the course has been stable or progressive. If it has been lifelong and stable, then dementia can be excluded. If the onset is recent, that is at least within the last few years for early cases, and if evidence of progressive deteiioration is present, the next decision is based on assessment of whether the intellectual impairment is widespread (global) or due to a specific neurological deficit. Tests of memory, orientation and new learning are useful to make this assessment. Specific neurological dysfunctions such as aphasia (speech impairment) and apraxia (not knowing how to use common objects) can occur in dementia, but memory, orientation and new learning are unimpaired when aphasia is the primary problem. In the presence of global cognitive impairment, it is important to rule out depressive pseudo-dementia (instances in which a severe depression produces symptoms sometimes confused with those of dementia) and benign senescent forgetfulness (a non-serious if bothersome forgetfulness which does not seriously impair function or worsen dramatically over time (Kral, 1962). Both these conditions are usually self-limiting. The next important decision is to identify conditions where no permanent damage has occurred to the brain although the neuronal circuits may be dysfunctional. These are the acute confusional states or deliria. The next step in the decision tree is to sort out the secondary from the primary dementias. Finally, the Alzheimer's, multi-infarct and other dementias are subclassififed. 'j

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Alzheimer's Disease is the most common and understanding of the mechanisms for this disorder (and thus the possibility of treatment) is undergoing fairly rapid development. Tissue changes in the brain can be recongized microscopically in that normally straight tubules within the nerve become tangled (neurofibrillary tangles) and the nerve endings become embedded in accumulations of broken down materials called senile plaques. These are not the only changes but they are very characteristic of Alheimer's disorder and are rarely found in other conditions in such concentrations. These distinctive neuropathological changes are of little practical help in diagnosis of living patients because brain biopsy (removal of living tissue) is only rarely justified or done. These changes and the reduction in the number of nerve cells occur mostly in those regions of the brain that deal with memory and seem to involve mainly nerve cells that secrete a specific type of chemical (acetylcholV'e) which is one of the chemicals involved in transmitting messages from one nerve to another. Presumably this neurotransmitter system is intimately involved in the processes of memory. The cause or causes of these changes are not presently known. In some cases there appears to be a genetic predisposition (Heston, 1981). However, there is no evidence yet that the disorder is strongly genetic in origin and we must assume that most cases are due to other causes. Toxicity due to certain metals, such as aluminum, is a possibility, but there is no strong evidence in favor of it. Certain types of dementia

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!} (Creutzfeldt-Jakob Disease and Kuru) have been shown to b~ transmissable from one person to another but the mode of transmission is highly unusual and probably involves either ingesting tissue from a victim or transplantation. These types of dementia are not contagious in the usual sense and there is little evidence that Alzheimer's is transmissible under any circumstnces. Some alteration in the immune system, so that it attacks the body rather than germs and foreign particles, is another possibility that is being studied. Alzheimer's disease may well be more than one condition or due to multiple causes (Seltzer and Stevenson, 1983; Jorm, 1985; Mayeux et al., 1985). However, we don't know yet how to distinguish these subtypes if they exist. Age is not regarded as a useful way of subtyping this condition. The previous distinction between a young type or presenile Alzheimer's dementia and an old type or senile dementia has been generally abandoned. There are some types of dementia, also involving tissue changes in the brain, which are quite different from Alheimer's disease. They are also uncommon. Pick's Disease is one and it tends to occur prior to age 65 and to show different brain changes. However, its most characeristic feature is that it is rare. Multi-infarct Dementia is sometimes called arteriosclerotic dementia. Here a series of small strokes result in the death of limited areas of brain tissue any one of which might not cause intellectual impairment but which cumulatively lead to progressive dementia. Some of the same abnormalities that lead

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to a vulnerability to stroke are also predisposing to multi-infarct dementia: These are high blood pressure, high blood cholesterol, obesity, smoking, lack of exercise, and perhaps a genetic tendency. Possibly the same steps that can reduce hypertension and its effects on stroke and coronary artery disease might also reduce the chances of developing multi0infarct dementia. In theory, it should be possible to slow the course of the disorder and allow a certain amount of recovery by treating the underlying causes. Thus it may be important to distinguish this type of dementia from Alzheimer's Disease. Features which suggest that a progressive dementia is multi-infarct rather than Alzheimer's Disease include: an abrupt onset, stepwise progression (deterioration occurs in sudden spurts with relatively stable intervals before the next exacerbation), emotional !ability (the patient over reacts in responding to emotionally-laden topics), hypertension, stroke, evidence of arteriosclerosis elsewhere, signs of cardiovascular disease elsewhere in the body, focal neurological signs (evidence of limited neurological damage), fainting and fits. Some of these symptoms have been included in a scale (Hachinkski et al., 1975) which is helpful in distinguishing multi-infarct from Alzheimer's type dementia. Alzheimer's Disease and multi-infarct dementia, both usually progressive in course and with no available treatment, constitute the large majority of the dementing disorders. Other dementias, of which there are dozens each fairly rare in occurrence, here can be usefully thought of in three tr

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categories: progressive, static, and potentially reversible. The progressive dementias (e.g. that associated with Parkinson's disease) have public health consequences likely quite similar to multi-infarct and Alzheimer dementia --a course (whet~er steady or not) of progressive deterioration and ever greater dependence followed by premature death. The static dementias (e.g. those due to head trauma) imply prolonged dependence with little change and no possibility of effective treatment. Potentially reversible dementias include states which resemble dementia but are reversible (but may not produce the symptoms of acute confusional state, probably because they are of very slow onset). One of these conditions is normal-pressure hydrocephalus. In this condition there is an abnormality of the circulation of the cerebral spinal fluid which is normally secreted deep inside the brain and flows out of the brain through a system of canals and then around the surface of the brain until it is absorbed through vessels at the top of the brain and inside the skull. In rare instances, because of an abnormality of flow, the fluid accumulates and the brain is compressed. There is intellectual impairment, an alteration of the way the patient walks, and a tendency for urinary incontinence early on in the disorder. Brain imaging techniques assist in diagnosis and, in some cases, surgery can help provide a new avenue for the flow of fluid; sometimes the patient's intellectual performance improves a great deal. Conditions such as this, which occur rarely, and the much /1

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2o more common conditions producing acut~ confu$ional states provide good reason for investigating thoroughly all new cases of dementia, of sudden deterioration in ~ld cases of dementia.

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EPIDEMIOLOGIC STUDIES We have taken under review all studies undertaken since 1945 which have published detailed accounts of prev~lence rates of dementing disorders in elderly populations. These studies and their key methodoogic features are shown in Table 2. This, (with some slight variations) is the body of work which published reviews and secondary analyses take into account. (Careful overviews of the European studies include Gunner-Svensson and Jensen, 1976; and Kay, 1977. The more recent reviews of Neugebauer (1980)and Mortimer and Hutton (1985) draw out the implications of these studies for prevalence and incidence in the United States). Table 3 gives a crude view of the prevalence figures reported in these studies, ranging from 11 to nearly 81 in the non-u.s. studies and from over 21 to nearly 71 in the u.s. studies. Such great variation greatly limits the value of such studies in providing the key public health datum of prevalence (i.e. how many are there?) So we will devote some attention to 2../ gleaning from these studies improved~ estimates of prevalence by trying to account for sour~es of variation in these reported prevalence rates other. than possible real variation from study to study. Such other and spurious sources of variation, unfortunately, are many, while the number of studies is small. variations in the Population Studied

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Table l. Major Epldemlologlc Surveys Yielding Prevalence Estimates for Dementlng Conditions: Areas Studies, Type of Population Sampling, Ascertainment Methods and References Investigator/Site/ Date of Study Outside the United States Southern Sweden 1947 Iceland 1957-72 Northern Scotland 1959-1961 Newcastle, England, 1960 Denmark, 1961 England, 1961 Denmark, 1962 Type of Area Studied A rural district Type and Completeness of Population Sampling Entire Pf.pulatlon over 18 years oldo Less than 31 missing fro survey. Whole country All 74-76 year olds A small town Entire population and surrounding Urban Sample of the elderly from electoral rolls In a district of an industrial city Ascertainment Methods References Direct Interview Essen-Moller, by psychiatrist; 1956 wt.ore needed reference to local Informants, health records Medical records, Helgason, 1973 psychlatr le interviews GP with detailed Primrose, 1962 personal knowledge and consultation with local health professionals Psychiatric Interview Kay et al., 1964 A rural island All elderly Researcher Nielson, 1962 Swansea Small town In rural Denmark i9tea;.vlew of G-Ps~c.( t\O\. Only community residents Interview Research Interview of GP Parsons, 1965 Jensen, 1963 J l ) .) ) ) ) ) l J .J ., J. J

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wit tr -== 'e _....,.._.___, __ .,.,_ .. __ .. --... Investigator/Site Date of Study Sweden, 1964 Copenhagen, Denmark, 1966-68 London, England 1975-76 Gottenburg, Sweden 1971-72 Northern Scotland New Zealand Type of Area Studied Rural Suburbs London Small city Urban Glaborne Type and Completeness of Population Sampling All 68+ All 71 year olds 931 Interviewed Two-atage probability sample Sample of all 78 year olds. 861 given psychiatric exam Community residents 65+ 21-311 referrals Random, age-stratified sample of all 65+ 5.11 refusals Ascertainment Methods Records and informants to obtain list of po88lble cases Psychiatric Interview Psychlatr le interview Comprehensive semi-structured health and psychiatric Interview Psychlatr le Interview 1. Brief MSQ-type questionnaire lf posl ti ve, then 2. Brief neuro-logical 3. History from Informant 4. Blood tests References $~ Ake1onr.1969 Bollerup, 1975 Gurland et al., 1983 5 Per,ron, 1981 tl. Bro) et al, 1976 Campbell et al., 1983 I ,.

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t :,, "1 Investigator/Site Date of Study Finland, 1977-81 Finland, 1976 Type of Area Type and Completeness Studied of Population Sampling All of Finland 2-stage, age-stratified City In SW Finland .Pl I t ,,-,(cluster sample of all over 31 years old (N,HI) 971 interviewed 981 health examined All a'es I. XI of hospital Inpatients wl th suspected dementia had health records reviewed 2. all In geriatric nursing homes suspected of deaentla were examined by neurologist 3. area health authority clients (getting home help and home nursing) and suspected of deaentla were exaalned Ascertainment Methods References As part of health Sulkova et al. survey: those under 75 were screened 1. brf ef tests (Catttdl 's G Factor and a verbal 111emory test those positive and all those over 75 2. reviews of 11edlcal records Informant unknown Clinical Molsa et al., 1982 neurological exam psychological tests

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t.J .. .. Investlgator/Slte Date of Study U.S. Studies Baltimore, Syracuse, 1952 New York City 1975-76 Misslsslppi 1978 t l. t C I\ 1 \ ~tu... -New Haven 1980-81 St. Louts, 1981-82 Baltimore, 1981-82 Type of Area Type and Completeness Studied of Population Sampling Urban Urban All elderly residing ln 6 census tracts Urban Two-stage probablllty sample Copiah County All individuals Urban and Multi-stage probability sample Urban Multi-stage probability sample Urban Multi-stage probabll I ty exam Ascertainment Methods References Pasamanlck (1959, 1962) Gruenberg (1959) Compr~henslve Gurland et al., semi-structured (1983) health and psychiatric interview 1. Household Schoenberg, 1985 interview to screen for dementia 2. All positive on screen given neurological exam Mini-mental state Robins, Holzer, exam (MMSE) Weissman, et al., Score of 8-17 1984 Mini-mental state Robins, Holzer, exam (MMSE) Weissman, et al., Score of 8-17 1984 Mini-mental state Robins, Holzer, exam ("1MSE) Weissman, et al., Score of 8-17 1984 t

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Table 1. Major Epidemlologic Surveys Prevalance in Investigator ( s) Elderly Population Outside the United States N Prevalence ,Essen-Moller, 1956 443 5.81 Primrose, 1962 222 4.51 .... Kay et al., 1964 443 5.71 Nielson, 1962 978 3.11 Akesson, 1969 2,871 .951 Parsons, 1965 228 4.41 Jensen, 1963 546 1.11 Bollerup, 1975 588 1.61 Broe, 1976 888 3.81 Helgason, 1973 2,642 3.61 Gurland et al., 1983 385 2.21 Campbell et al., 1983 559 7.71 Sulkova et al. 1,888 6.71 Persson, 1980 392 1.31 Prevalence of Severe Dementias Notes age 68 and over severe intellectual impairment age 68 and over Community residents Community residents 70 year olds only Community residents 74-76 year olds Community residents 70 year olds only only only only only

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rl-;:.J Prevalance in Investigator (s) Elderly Population Notes United States N Prevalence Pasamanick 4.81 Gruenberg 6.81 psychosis of aglnq Gurland et al. 445 4.91 Community residents only Schoenberg et al. 4,503 2.21 None of those over 60; 2.21 is prevalence for those 65+ New Haven ECA 687 5.81 severe cognitive impairment; community residents only St. Louis ECA 576 5.11 severe cognitive impairment; community residents only Baltimore ECA 923 4.81 severe cognitive impairment; community residents only

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One possible major source of variation in the completeness of sampling the population is in the exclusion of those in institutions such as nursing homes, psychiatric hospitals, boarding houses and the like. Since such institutions can be (at present in the United States, usually are) major providers of care for the demented--taking care of a fifth to over a half of all those with a dementia, the inclusion of this portion of the population introduces a certain and large source of variation. The size of this variation is directly dependent on the proportion of all cases residing in such institutions and this proportion varies over time and from locale to locale and hence is impossible to adjust for in all the studies here considered. Renee we need to give spec~al reliance on those studies which include~ the community resident and the institutionalized population. A further source of variation is in the age boundaries of the population selectedo Most of the studies report (or allow calculation of) prevalence for all over ~5 years old. A few studies report rates for all over 60 and this, given the much lower rates at 60-64), should result in lower rates reported by those studies of all over age 60. If we assumed the current U.S. age distribution for those over 60, a real SI prevalence in the over 65+ and !!.2. cases in the 60-64 group then we find a 41 prevalence in the population over 60 and difference of 201). Another source of variation between studies might stem from differences in age structure but calculations show this to be trivial among the studies here considered. A few of the studies

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report rates for only a narrow age interval within the elderly population: 70 year olds (Bollerup, 1975; Persson, 1980), 74-76 year old (Helgason, 1973). For reasons already stated these are clearly not useful in estimating overall prevalence (though we do use them to describe age-specific prevalence, below.) To lessen the variation in reported prevalence estimates due to differences in population definition, we need to place special value on studies of the entire elderly population 65 years of age and over. One consequence of this is that data on the u.s. population is severely limited. The Epidemiuological Catchment Area (ECA) studies have not as yet published estimates for the entire population {which they did study) but only (as yet) for those outside of institutions, the one partial exception being the Esatern Baltimore ECA study which has published one account of prevalence for the elderly in nursing homes (German & Kramer, undated). Gurland's study in New York City again reports on the community-resident population. Here a complementary study by the same research group of the elderly in institutions permits some more narrowly-bounded estimate of total prevalence. Variations in Case-Funding These studies may differ as well in the completeness of sampling and finding all individuals subject for study. Many of the earlier European studies were conducted in small communities where the entire elderly population was easily,

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accurately and completely l~sted and where nearly all listed individuals cooperated in the study. This is a sharp contrast to the generally recent studies or studies of larger populations where a sample needs to be drawn of a population for which no list of individuals exists. Here typically a sample of geographical areas may be drawn, then a sample of households, then a sample of individuals in households is drawn, and some of these cooperate, others not. Still where examined the biases introduced have not been shown to be other than trivial (Gurland, 1983; Holzer et al., 1985) though few studies devote any_substantial attention to this possible source of bias. Case Ascertainment Methods These are perhaps the largest sources of variation in these studies. This is why the system of classification and steps in clinical diagnosis have been discussed in some detail earlier. Concluding that an individual suffers from a dementing syndrome requires a complex series of decisions (each fallible), calling upon detailed knowledge ~f the onset and course of symptoms, prior personality and adaptation, psychiatric status and ~istory (Roth, 1981). Deciding what~ of dementia an individual has requires careful history taking, knowledge of medical details, and may require use of special medical and laboratory tests (see United States DHHS 1984 for recent recommendations of experts on information needed for accurate diagnosis) which (with a few Lf

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exceptions) have not been undertaken in epidemiologic community studies. The recent American studies, unfortunately, have been especially lacking here. Gruenberg's study in Syracuse ascertains only psychosis of aging, a category which may include functional psychiatric disorders. The ECA studies report results (mostly) for a group of persons characterized as cognitively impaired and make no stronger claim, acknowledging that this may include persons suffering from other mental conditions such as mental retardation, learning disability, a major depression (Holzer, Tischler, Leaf, et al., 1984) and that cognitive impairment does not make a diagnosis. Rather a need for further evaluation (Folstein, Anthony, Parhad, et al., 1985) Studies not vigorously working to include only those with dementing syndromes may then tend to overcount cases, i.e. include as cases some unknown proportion of those not demented. Severity criteria may also exist. Akesson (1969) for instance, (precisely because he takes the criteria for dementia to be poorly defined), counts as cases only those who are continuously disoriented and reports the lowest prevalence of any study. Schoenberg et al. (1985) require their cases (among other criteria) to need constant supervision and evidence of nocturnal disorientation. Some of these studies include the category mild dementia and with extremely heterogeneous results. Nielson (1962) finds 5 cases of mild dementia for each case of severe dementia, Bollerup 3l

PAGE 33

1>/ (1975) finds 2, Essen-Moller 2, and Kay but 1. Henderson and Huppert (1984) have recently reviewed the problem of mild dementia and, while holding that mild dementia should be an area of particular research interest, conclude that there is little agreement about criteria for its presence and little knowledge of its natural history or course. The separation of those mild dementias which are an early stage of a progressive dementia from those which may follow a benign course is not yet possible. These basic problems are reflected in the great range of rates reported in epidemiological studies and indicate that even were the number of mild dementias of pressing import, only the most imprecise prevalence estimates could be forthcoming. We have not considered further these results. Current work (Berg et al., 1982, Storandt et al., 1984) attempts to specify and validate concepts of mild dementia and further studies may confirm this work and, at some future time, allow the epidemiology of the mild dementias to be better assessed. Adjusting Rates for Total Prevalence We have eliminated all studies not including both community and institution populationsr studies covering only a narrow age segment, and the studies (Akesson and Schoenberg) with especially strict case ascertainment criteria. Where thought reaonable, adjustments for age boundaries of the population or to include those in institutions have been made. The resulting estimates (see Table 4) fall into the much narrower range of 4.5-6.71 for

PAGE 34

Tablet Adjusted Estimates of Total Prevalence of Dementia in the Elderly Population Original Published e Improved Non-U.S. Studies Estimate Cor1~ctions Estimate Essen-Moller, 1985 5." A 6. 01 Primrose 4.5 None 4.51 Kay et al, 1984 5.7 None 5.71 Gurland et al, 1983 2.2 B 4.71 Sulkova et al 6.7 None 6. 71 Med =s. 21 u.s. Studies Gurland et al, 1983 4.9 B 7.41 New Haven ECA 5.8 D -6.51 St. Louis EC.,. 5.1 D 6.61 Baltimore'Be,r 4.0 D 5.51 NA.D = ".,.r Notes A Readjusted to 65+ population B = Adusted to include institutionalized population studied by same investigators D Adjusted to include institutionalized population assuming 51 of elderly in institutions and 1/3 of these are demented. ~--(. 33

PAGE 35

the non-u.s. studies (median value of 5.2); for the U.S. studies these adjustments produce a range of estimates 5-71 with a median of 6.51. Occurrence of Dementia in the Non-elderly Table S sets out the prevalence of all severe dementias in the non-elderly (less than 65 years of age usually). These range from 4 to 26 cases per 1188 population in the studies using diagnosis and with around 51 cases per 1000 identified in the ECA studies as cognitively impaired. As a proportion of all cases of dementia, the non-elderly range from e-111 in the diagnostic studies and suggesting that s-111 as a reasonable range. The nmumber of cases in the elderly population would need to be increased 5-101 to estimate cases in the total poipulation (i.e. all age groups). Sub-types of Dementia Other Dementias Table 6 sets out results from the few epidemiologic studies where some attempt has been made to sub-classify the types of dementias. Taking first the prevalence of all types other than multi-infarct and Alzheimer's, reports range from 91 to 351 with six falling between 111 and 211, a fairly narrow range considering that the studies range over many countries over a 20

PAGE 36

.

PAGE 37

\; ,_ Table S. Major Epidemiologic Surveys. Prevalence of Dementia in the Non-Elderly Investigator (s) Outside the United States Essen-Moller, 1956 Pr imr.ose, 1962 Sulkova et al Molsa et al. United States Schoenberg et al. New Haven ECA St. Louis ECA Baltimore BCA Prevalence in Non-senile (age<65) 841 (1 case of 2187) (8-2 cases in 1488) .261 (16 In 6888) .831 (39 In 158,888) .8451 (2 in 4422) 61 51 51 I' ... ,' .,. Proportion of All Cases Who Are Not Elderly 51 01-281 11.01 9.81 331 311 221 Notes 18-59 vs 68 8-59 vs 68 48-59 vs 68+ 18-64 vs 65; Excludes those in institutions 18-64 vs 65 18-64 vs 65+ '.

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\f\ ('I\ Investlgator(s) Primrose, 1962 Kay et al., 1964 Bollerup, 1973 Broe, 1976 Gurland et al., 1983 Sulkova Table (,. Major Epldemlologlc Surveys Sub-Ty~es of Dementia primary, "Alzhelmers Senlle psychosis Multlfaret, vascular, "Arterlosclerotlc Psychosis with cerebral arterio sclerosis 281 (2) Other = 201 (2) Disseminated sclerosis blind loop syndrome with resulting 11alabsorptlon of / a-group vitamins 1 _____ 11 o --------&11;-----ScJ fo _____________ Le /. 2S1 (8) 711 Primary 581 (78) 391 (12) 231 vascular 391 (SSJ 351 (11) Secondary 111 (16) (posttraumatlc encephalopathy (7)1 alcoholism (3), Parkinson's disease (2), alcoholism + reap I ratory failure, neurosyphllls, aeguellae of encephalitis, MS (1)1 J .. ., )

PAGE 39

,. -' l Multlfarct, -' primary, vascular, C"' Invest lgator ( s) A1zhel11ers Arteriosclerosis !ill! ., Molsa 521 (218) 361 (152) 121 (Parkinson's (12)' Trauma (12)1 Wernlcke-., :. Korsakoff (7)1 Lues CS)1 menlngoencephalitis CS)1 .l normal pressure hydro-cephalus (]), Intoxication (2)1 ') brain tumor, Huntington's chorea, anoxla + hypoxia (1) Gurland, et al. A1zhel11ers \3,'1 (3) 91 C2) 771 (12) Schoenberg, et al. Primary, chronic Stroke (11) and l:t, .... "le 181 7.51 (6) ) progressive 591 stroke+ alcoholls progress!;"' unknown (1) 161 with uneertairi etiology (12), rarld onset (2) un nown clinical course (6>, 11enlngltls, alcoholism, normal pressure ,I hydrocephalus, encephalitis (1) Baltimore ECA 321 461 211 65+ subjects only

PAGE 40

year span. Further analysis of the sub-types themselves perhaps not warranted, given the very small number of cases in these studies. Multi-infarct Dementias Estimates for these (as a proportion of all dementias) range quite widely from 131 to 501. Alzheimer's As we have pointed out earlier, this is a residual diagnosis: If~ progressive dementia is identified occurring past middle-age and secondary causes are considered eliminated, the remaining diagnosis is Alzheimer's. Hence the rigor with which other purported causes of the dementia are excluded may greatly affect the proportion of dementias diagnosed as Alzheimer's. In the epidemiologic surveys the percent of all dementias diagnosed as Alzheimer's ranges very widely from 251 to 771. The median around 501 is a convenient figure but there is no reason to believe that there is not real variation from study to study in these figures. Is the Prevalence Rising? Recent attention to the increased number of dementias I include an approaching epidemic" (Plum, 1979), a quiet epidemic (British Medical Journal, 19_), part of a rising pandemic" (Kramer, 1982,), or a deluge" (Wells, 1981). The word epidemic has at least to the lay person dread connotations of something contagious, perhaps deadly (and indeed while not contagious the

PAGE 41

individual's chances of dementia given survival to the eighth decade are likely well over 201). These statements are based really on three key facts: (1) the steeply rising prevalence of dementia with age (2) projected increases in the number of elderly in the U.S. population (though this is a general, not only a U.S., problem), (3) the increasing age of the elderly population. The increase of prevalence of severe dementia during old age is seen in Figure 2, a tact about which there is no disagreement and about which estimates are within a surprisingly narrow range. If we assume (conservatively and for ease of illustration) that prevalence is at 11 for those 65-74; 71 for those 75-85 and 251 for those 85+, we aan apply these prevalence rates to the projected elderly population of the United States over the next 50 or 70 years. Figure 3_shows these projections with upper and lower bounds which assume possible substantial changes in prevalence (i.e. in incidence or duration). (See Table 7 for actual numbers). Given unchanged age-specific rates of prevalence, the total number of cases of elderly with dementia .. will increase fourfold by 2040. The overall prevalence rate with the total elderly population will increase by a half. The contribution of various elderly age-groups to this increase is seen in Figure 4. The additional cases are largely from the 75+ group and especially from those 85 and over. The proportion of all elderly cases over the age of 85 would shift from perhaps 451 now to over 601.

PAGE 42

4t ... cu CJ en "' 0 ..:i -rlJ CJ z rlJ > Ce 30 Figure~ Age-Specific Prevalence Rates of Dementias Found in Various Studies I( E 20 ---------------------------~~----15. 10 5 ,. 4 3 2 65 70 75 80 !\GE B = Bollerup (1975) E = Essen-Moller (1956) H = Hegalson (1964) K = Kay (1964) N = Nielson (1962) 85

PAGE 43

"""' m C 0 .. ... ... -~ z u 0 m X Q z 8 7 6 5 -4 3 2 1 Figure~Projected Cases of Established Dementia in the United States -Central estimate assumes constant agespecific prevalence Lower estimate assumes decrease of one half in duration or incidence -Upper estimate assumes increase of one half in duration~ incidence 1980 2000 2020 2040 YEAR q/

PAGE 44

--:r Table 7. U.S. Population cases of Deaentla, Prevalence of Dementia, and I of Cases In A. u.s. Po~ulatlon (Mill Iona) 1951 !!!! 1971 1981 1991 !!!! ill! 2121 65-74 8.49 11.15 12.49 15.65 18.85 17.69 21.28 29.77 75-84 3.31 4.H 6.17 7.79 18.28 12.21 12.17 14. 28 85+ .61 .91 1.43 2.27 3.46 5.14 f;.82 7.34 TOTAL 12.4 16.7 28.1 25.7 31.8 35.1 39.3 51.4 B. Cases of Dementia (Thousands) Aasualng Prevalence 11 at ages 65-741 71 at 75-841 251 at 85+ 65-74 75-84 85+ TOTAL 84.9 231.7 151.1 466.6 111.s 327.6 225.1 663.1 c. Prevalence In 65+ Age Group (I) 3.76 3.97 D. I of All Cases Age 85+ 321 341 124.9 156.5 181.5 176.9 212.8 297.7 431.9 545.3 719.6 854.7 851.9 999.6 357.5 567.5 865.1 1,285 1,715 1,835 914.3 1,269.3 1,765.1 2,316.6 2,759.7 3,132.3 4.55 4.94 5.55 7."2 6.11 391 451 491 551 621 591 Source of Population Estimates (1951-1181) and Projections (1991 on)s u.s. Census, Current Population Reports, Serles P-23, No. 138 Demographic and Socioeconomic Aspects of Aging In the United States U.S. Government Printing Office, Washington D.C., 1984. Older Agb Groups 2138 2841 34.42 29.17 21.13 24.53 8.88 12.95 64. 3 66.6 344. 2 291. 7 1,479.1 1,717.1 2,281 3,234 4,123.3 5,242.8 6.26 7.87 551 621 l ) : !. ; I

PAGE 45

en C 0 .-f ,-f ,-f .-f z en rz:I en < CJ Cl. 0 0:: CIJ ca z ::, z 5 4 3 2 1 1960 Figure 'f-. Contribution of Elderly Age Groups to Projected Increase in Cases of Established Dementia 85+ 75-84 65-74 1980 2000 2020 2040 YEl\R

PAGE 46

Is Incidence or Duration Changing? Prevalence is a result of incidence (new cases arising per unit of time) and duration (how long the case persists in the case of~ dementias duration is until death). If the age struture of the population is constant, then an overall incidence, for example of 11 per year together with a 5-year average duration, would result in a (5 + .01) SI prevalence. Decomposing prevalence into incidence and duration would allow a more fine-grained approach to epidemiology but as we have seen, in the epidemiology of the dementias even reliable prevalence figures are quite few and only a handful of studies yield incidence rates--such studies require expensive monitoring of the population for new cases over-time (longitudinal studies are discussed extensively in Sluss, Gruenberg, and Kramer, 1981). The Lundby study initiated by Essen-Moller in 1947 (and from which we have drawn prevalence data) was succeeded by a follow-up study of the same population by Bagnell (1966) ten years later and 25 years later by Bagnell and Ojisjo (Bagnell et al., 1981; Bagnell et al., 1983). A decreasing incidence was found between the two periods (1947-57 !! 1957-1972) such that the cumulative I probability of having a severe dementia given survival to age 89 decreased from .37 to .26 for males and .45 to .30 for females. A later paper (Hagnell et al., 1983) showed this declining incidence to hold true for both multi-infarct and senile dementia. This single study is hardly enough to confirm a pattern of decline in incidence.

PAGE 47

In any case, the declining incidence in the Lundby study was more than counterbalanced by increased survival of cases of dementia (perhaps due to improvement in medical care): the net result was increased prevalence (Gruenberg, 1978). svanborg (1984) reporting only changes in prevalence between sucessive cohorts of 70-year-olds in Goteborg, Sweden found no differences in prevalence of dementia between the two cohorts separated by 5 years. Reports on cases of dementia admitted to hospitals in Britain (Blessed and Wilson, 1981; Christie, 1982) pointed to increases in longevity over the past 20-40 years. So the scanty evidence available is hardly conclusive in establishing increased prevaJence of the dementias. But--changes in age structure surely imply increased prevalence; possible decreases in the mortality associated with the dementias imply increased prevalence. The Increasing Burden of Care The implications of these projected increases in cases of dementia are still more dire when possible changes in the support and care for these dementias are considered. Now the great burden of care falls to the informal supports--to umpaid, voluntary helpers almost always the spouse or children with, perhaps, three-quarters of all cases receiving no significant additional help from public programs (beyond those all elderly receive). The complement to these facts is seen in

PAGE 48

the fact that those in nursing homes are disproportionately those without available informal supports. One consequence of these facts is that small shifts in the pattern (e.g. availability, capacity, willingness) of informal supports may have great consequences for the formal supports. Social and demographic changes are widely expected to weaken the systems of informal supports available to the elderly (Treas, 1977; Kobrin, 197~; U.S. Bureau of Census, 1984). The great differences in life-span between males and females together with the fact that females typically marry men older than themselves result in a highly unbalanced sex ratio in old age. As recently as 1938, there was roughly a male for every female in the elderly population; today there are but .7 and this ratio will become slightly more skewed over the foreseeable future. For males, this means they are more likely to have a living spouse to care for them in event of need. However, for females--and especially for the quite elderly females most at risk for dementia--the chances of having a spouse to rely upon will grow somewhat smaller. Middle-aged married women now go to work --in the past thirty years their participation in the labor force has risen from 111 ro over 451. (U.S. Census, 1973). If it be imagined that females will leave the labor force when necessary to care for kin, recall that 301 of the mothers of pre-school children now work, leaving the care of their children to others. Surley an indication that they would as likely leave the care of aged parents to others (Treas, 1977). So these daughters will play a diminished role--there will be fewer of

PAGE 49

them and other commitments would more often preclude the often full-time responsibility of caring for a demented parent. Figure 5. traces expected changes in the availability of children to care for the very aged (80+) through the year 2030. Over the years 1980 to 2000 we can expect even sharper increases than in the 1951-1980 period. The sharp dip (from the year 2000 to 2021) and ~onsequent rise after 2020 reflect the baby boom of the 1940's and 1958's passing just through the 60-64 age interval and then the 88+ interval. The broader facts of societal dependency are depicted in Figure 6. Here the entire elderly population is seen as a proportion of non-elderly adult: Here only slight increases will occur until the beginning of the baby boom generation reaches age 65 after the year 2010. It seems only reasonable to expect that the burden of care for the demented--now borne largely by their families--may shift still further onto the shoulders of non-family members and become increasingly a public rather than a private burden. It is difficult to foresee possible consequences of these changes since they will be in large part dependent upon future development (or lack of development) in formal provisions of services to the elderly and such formal provisions may (and have) undergone quite rapid changes in periods as short as a decade (Kramer, 1977). The widescale emptying of the elderly from public mental hospitals and the expansion of nursing homes are witness to the fact that patterns of public provision of services can change quite rapidly. V7

PAGE 50

0 .... 7 -.6 .s 4 -.3 .2 .3 Figur.e Familial Dependency Ratio (Population aged 80+ as a Proportion of those 60-64) 1960 1980 2000 2020 Figure(.. Societal Dependency Ratio (Population 65+ as a Proportion of those 18-64) ------1960 1980 2000 2020 Source: U.S. Census, Current Population Reports, Series P-23, No.59. (Adapted from Table 6-10)

PAGE 51

EPIDE~IOLOGIC RESEARCH Recent Federally Supported Research Recent federally-supported epidemiologic studies are listed in Appendix A. The most striking aspect of recent federal efforts is their paucity. For a disease which is a major public health problem--whether judged by its economic impact on the public purse, its involvement of millions as caretakers and supporters of the demented, or by the very subtantial chances of any individual of becoming demented in old age--epidemiologic work remains in a primitive state whether judged by the epidemiology of other disorders, by the history of distinguished European efforts or by state-of-the-art epidemiology as exemplified by the recent Finnish studies (Sulkova, 1985). The ECA Studies The single largest American effort in psychiatric epidemiology--the ECA studies--have not, at least in the epidemiology of dementia, produce~ any distinctive advance in this field and in many ways are a significant regress. These studies, fielded as the largest and most exp~nsive epidemiologic studies of psychiatric disorder ever undertaken, used instruments for case ascertainment never tested in a community population. The basic interview--the Diagnostic Interview Schedule--seems originally intended to judge symptoms of Dementia, their severity, frequency and distribution over time and eliminate possible alternative explanations and make a

PAGE 52

diagnosis of dementia (Robins, Holzer, Croughan et al. 1981). But in the end, a brief mental status exam was administered and all over an arbitrary error score as regarded cognitively impaired--a term which appears to be only another way of saying someone scored poorly on the test. Two sites have yet to report results (due to later starting dates). Of the three sites reporting major results on the elderly, only one has reported data on the elderly in institutions and only one has rigorously attempted to comprehensively diagnose and evaluate by further study those identified as cognitively impaired. The cooperative agreements (between NIMH and each study site) which supported these efforts now have been ended with the investigators at each site left free to apply (or not) for competitive research funds. Thus there is no assurance that cases of dementia located in the initial studies will be followed. Recommended Studies We are in a poor position to judge the competitive claims of epidemiologic studies of dementia as opposed to basic research, clinical research and health services research. The claims of epidemiology overlap with all those but it does have a distinctive role in informing public policy and decision-making. Incidence/prevalence

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In our view, little is to be gained by further studies where the main thrust is the only estimate af prevalence. Some suggestions (Gruenberg, 1978; Mortimer and Hutton, 1985) that incidence may decline after age 85 or 90 and have pointed out the possible implic~tion of this finding (if true) in locating a group of individuals (those very old and unaffected) not subject to dementia and hence of special interest. Given the high incidence after age 85, small studies to either establish or refute this finding would be relatively straight-forward and inexpensive. Such studies might usefully be done as a part of Studies of the very old with dementias along a variety of lines. Health services research examining use of health services, and alternative service arrangements may be especially valuable since the very old (say, over 81 or 85) are very likely to be demented, very likely to lack strong informal supports, are increasing rapidly in number, and constitute an increasing proportion of all dementias. Studies of Institutional Care Perhaps half of all nursing home residents are demented and nursing home costs are a large portion of health care expenditures both for the public and for individuals for whom such expenditures are one of the most frequent sources of catastrophic health care expenditures (Congressional Budget Office, 197-). Even basic descriptive nationwide surveys of such institutions are too infrequent. The last National Nursing Home Survey was evaluated in 1977-78 and the next in 1985-86 will not fl

PAGE 54

be reported for several years. Our understanding is that improvements in the survey to be undertaken will allow better identification of the elderly suffering from dementias but such studies should be more frequent, should include an admissions cohort to give a better view of short-term versus long-term care. Adequacy of Current Ddementia Evaluations Studies of referrals to special evaluation units seem to reveal that misdiagnosis of dementing syndrome is common, and that opportunities for effective medical treatment are missed. These treatment opportunities may exist both for those with progressive dementias who have overlooked and aggravating medical problems and for those with possible treatable reversible dementias. How common such missed pos~ibilities are remains, in our view, nknown. This number may be small but studies to investigate the adequacy of existing health care arrangements for the prompt and adequate identification of such problems should be undertaken, perhaps first in situations where poor provision might be expected: minorities, the poor, etc. Such studies could be usefully done, focussing perhaps on new admissions to nursing homes identified as demented and reviews of their recent medical diagnosis and treatment.

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APPENDIX A: Recent and Ongoing Federally-Funded Studies in the Epidemiology of the Dementias (DHHS, 1984) National Institute on Aging Barry Reisberg, M.D. New York University, New York, N.Y. Aging and Dementia: Longitudinal Course of Subgroups RSl AG-83151-81 Dennis A. Evans, M.D. Peter Bent Brigham Hospital, Boston, Mass. Senile Dementia: Natural History Nil AG-12186 Interagency agreement with National Heart, Lung, and Blood Institute Investigate Senile Dementia in Framingham Heart Study Y82 AG-28848 Interagency agreement with National Institute of Mental Health Catchment Area Study of Senile Dementia Y81 AG-98828 Leonard M. Schuman, M.D. University of Minnesota and Minneapolis-St. Paul Epidemiologic Study of Alzheimer's Disease R01 AG-81529 National Institute of Mental Health NIMH Epidemiologic Catchment Area Program National Institute of Neurological and Communicative Disorders and Stroke B. Schoenberg 0D/IRP/NINCDS Epidemiology of Dementia Z01 NS-02240-06 B. Schoenberg OD/IRP/NINCDS Racial Differentials in the Prevalence of Major Neurologic

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Disorders and Surveys in Developing Countries Z01 NS-02370-04 Veterans Administration L.M. Schuman, M.D. Miineapolis VAMC Epidemiologic Study of Alzheimer's Disease Administration on Aging The following of the Long Term Care Gerontology centers sponsored by the Administration on Aging (AOA) are engaged in activities relating to the epidemiology of the dementias: Sidney Katz, M.D. Southeastern New England Long-Term Care Gerontology Center Brown University, Providence, R.I. 98-AT-2164 Barry J. Gurland, M.D. Center for Geriatrics and Gerontology/Long Term care Columbia University, New York, N.Y. 98-AT-2155 Frederick Tavill, ~.D. Long Term Care Gerontology Center Medical College of Wisconsin, Milwaukee, Wis. 98-AL-8818 1. Epidemiology Maureen M. Henderson, M.D. Pacific Northwest Long Term Care Center University of Washington, Seattle, Wash. 98-AT-2152

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REFERENCES Adofson, R., Gottfries, C-G, Nystrom, L. et al., "Prevalence of Dementia Disorders in Institutionalized Swedish People, Acta Psychiat. Scand. 63:225-244, 1981. Akesson, H.o., A Population Study of Senile and Arteriosclerotic, Human Heredity l~':546-56, 1969. Akhtar, A., Broe, G., Crombie, A. et al., Disability and Dependence in the Elderly at Home, Age and Aging 2: 112-111, 1973. American Psychiatric Association, Dia1nostic and Statistical Manual of Mental Disorders (Wash ngton, b.e.: American Psychiatric Association, 1988). Anthony, J.C., LeResche, L., Niam, v., et al., Limits of the 'Mini-Mental State' as a Screening Test for Dementia and Delirium Among Hospital Patients, Psychological Medicine 12:397-488, 1982. Barnes, R., Raskind, M., DSM-III Criteria and the Clinical Diagnosis of Dementia: A Nursing Rome Study, J. Geront. 36(1):28-27, 1981. Berg, L., Hughes, c. Cohen, L., et al., Mild Senile Dementia of Alzheimer Type: Research Diagnostic Criteria, Recruitment and a Description of a Study Population, J. Neurology, Neurosurgery and Psychiatry 45:962-968, 1982. Bergman, s., The Social and Societal Impact of Senile Dementia in Senile Dementia: Outlook for the Future, J. Werthheimer and M. Morris, eds. (New York: Alan R. Liss, .. 1985). Bergmann, K., chronic Brain Failure-Epidemiological Aspects, Age and Ageing 6, Suppl.:4-8, 1977. Bergmann, K., Epidemiological Aspects of Dementia and Considerations in Planning Services, Danish Medical Bulletin Vol. 32 (Suppl 1):84-91, 1985. Blazer, D., George, L.K., Landerman, R., et. al., "Psychiatric Disorders. A Rural/Urban Comparison, Archives of General Psychiatry 42:651-656, July 1985. Blessed, G., Tomlinson, B.E. and Roth, M., "The Association Between Qualitative Measure of Dementia and Senile Change with Cerebral Matter of Elderly Subjects, Brit. J. Psychiat. 114:792-811, 1968. f7_

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Blessed, G. and Wi_lson, I.D., "The Contempory Natural Histor} of Mental Disorder in Old A~e," British J. Psychiat. 141:59-67, 1982. Bollerup, T.R., "Prevalence of Mental Illness Among 70 Year Olds Domiciled in Nine Copenhagen Suburbs," Acta Psychiat. Scand. 51:327-339,1975. Brody, J.A., An Epidemiologist Views Senile Dementia -Facts and Fragments, American Journal of Epidemiology 115(2): 155-162, 1982. Broe, G., Akhtar, A., Andrews, G., et al., "Neurological Disorder in the Elderly at Home, J. of Neurology, Neurosurgery and Psychiatry 39:362-366,1976. Brunetti, P., "A Prevalence Survey of Mental Disorder in a Rural Commune in Vaucluse: Methodological Considerations. Campbell, A., Mccosh, L. Reinben, J. et. al., "Dementia in Old Age and the Need for Services, Age and Ageing 12: 11-16, 1983. Christie, A., Train, J. "Change in Pattern of Care for the Demented," Brit. J. Psychiat. 144:9-15, 1984. Cooper, B. and Bickel, H., "Population Screening and the Early Detection of Dementia Disorder in Old Age: A Review, Psychological Medicine 14:81-95, 1984. Cross, P.S., Gurland, B.J., and Mann, A.H., tong-Term Institutional Care of Demented Elderly People in New York City and London. Bulletin of the New York Academy of Medicine, 59,3:267-275. April 1983. De Paulo, j.R. and Folstein, M.P., "Psychiatric Disturbances in Neurological Patients: Detection, Recognition, and Course, Annals of Neurology 4(3):225-228, 1978. De Paulo, J., Folstein, M., Gordon, B., "Psychiatric Screening ona Neurological Ward," Psychological Medicine 10:125-132, 1980. Eslinger, P., Damasio, A., Benton, A., et al. "Neuropsychologic Detection of Abnormal Mental Decline in Older Persons,~ 253(5):670-674, 1985. Essen-Moller, E., "Individual Traits and Mobility in a Swedish Rural Population," Acta Psychiat. Scand. Suppl 100, 1956. Fillenbaum, G., "Comparison of Two Brief Tests of Organic Brain Impairment, MSQ and the Short Portable MSQ," !!.:_

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'JUL t t 1997 Congress of the United States Office of Technology Assessment LOSING A MILLION MINDS: COHPRONTING THE TRAGEDY OF ALZHEIMER'S DISEASE AND OTHER DEMENTIAS Contractor Documents Part~ Economics, Social Science and Health Services Research March 1987 THE OTHER TITLES APPEAR ON THEIR OWN INDIVIDUAL MICROFICHE UNDER APPROPRIATE CLASS NUMB The Economics of Dementia, George J. Neilson and Gerald L. Robinson, Battelle / Columbus Laboratories, Columbus, Ohio 43201 'I~-I f9-;z /~ .2. M "I,/~/ Pf. 2 CD Financing Care for Patients with Alzheimer's Disease and Related Disorders, Karen Davis and Patricia Neuman, School of Hygiene and Public Health,/ohns Hopkins Univer~ity, Baltimore, Maryland 21205 '?).T '-/)..: 2 M <-, :Z / Pr, 2 / HN. Dementia Among Nursing Home Patients: Defining the Condition, Characteristics of the Demented, and Dementia on the RUG-ll Classification System, William J. Foley, Industrial and Management Engineeriny; Department, R,en~elaer Polytechnic Institute, Troy, New York 12180 '{ "3., a c2. /a.: M C. ~/~/PI ~J Nur*::> Analysis of Data Bases for Health Sen,ices Resefrch on Demo/J!iJ. Korbin yiu, The Urban Institute, Washington, D.C. 20037 3. 1 J ~/:.: i M ~&/ "J.. I PT, ;l / da+~ Impact of Dementia Within Minority Groups, Shirley A. Lockery, University Center on / ~'fT "/ Aging, San Diego State University, San Diego, California 92182 Y 3-l"K?-/.~: ;2 M" '-/' 1;-... :L""'p~cl Caregivers of Patients with Dementia, Yankelovich, Skelly and White/Cl;mcy, Shulman, Inc., New York, New York 10022 5-l ;.'). I g..: J.. rA ,~ 1~1-pr.:,. /carc. These are contractor documents that were used in preparing OTA's final Assessment Report. OT A makes these contractor documents available for the use of readers desiring a more detailed or technical discussion of an issue than can normally be accommodated in our final Report. As an OTA contractor documents, they have not been reviewed or approved by the Technology Assessment Board. The findings and conclusions expressed are those of the authors and do not necessarily reflect the views of OT A, the Advisory Panel or the Technology Asisessment Board.


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