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a Department of Epidemiology and Preventive Medicine, School of Medicine, University of Maryland, Baltimore
b Department of Health Policy and Management, School of Hygiene and Public Health, The Johns Hopkins University, Baltimore, Maryland
c School of Social Work, The University of North Carolina at Chapel Hill, North Carolina
d Department of Medicine, School of Medicine, University of Maryland, Baltimore
e Department of Neurology, School of Medicine, University of Maryland, Baltimore
f Other investigators in The Epidemiology of Dementia in Nursing Homes Research Group are Mary Cody, MD (University of Maryland, Baltimore), Paul Fishman, MD, PhD (University of Maryland, Baltimore), Dana Hilt, MD (Guilford Pharmaceutical), Frank Hooper, ScD (University of Maryland, Baltimore), Bruce Kaup, MD, MPH (University of Maryland, Baltimore), David Loreck, MD (University of Maryland, Baltimore), Joana Rosario, MD, MPH (University of Maryland, Baltimore), and George Taler, MD (University of Maryland, Baltimore)
Correspondence: Jay Magaziner, PhD, Division of Gerontology, School of Medicine, University of Maryland, 660 W. Redwood Street, Suite 200, Baltimore, MD 21201. E-mail: jmagazin{at}epi.umaryland.edu.
Vernon L. Greene, PhD
| Abstract |
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Key Words: Aged Long-term care Mental morbidity
Since the mid-1970s, between 4 and 5 percent of those 65 years and older have resided in nursing homes (
Current Population Reports and Special Studies 1996
;
Strahan 1997
), and an estimated 25%50% of those 65 years and older today will enter a nursing home during their lifetime (
Kemper and Murtaugh 1991
;
McConnel 1985
;
Murtaugh, Kemper, and Spillman 1990
). Given the anticipated increase in the population over age 65, the number of persons entering nursing homes is expected to increase dramatically through the first half of this century, with national expenditures for nursing home care expected to exceed $100 billion annually by the year 2050 (
Schneider and Guralnik 1990
). With the passage of the Community Mental Health Act of 1965 and the closing of large numbers of state psychiatric hospitals, the nursing home has taken on a prominent role as a caresetting for older persons with mental morbidities, most notably those with dementia. The implications of having large numbers of persons with dementia in nursing homes are far reaching in terms of the nature of the nursing home, policy and reimbursement concerns, and the quality of life of nursing home residents with and without dementia.
Surprisingly little is known about the prevalence of dementia among nursing home residents, and even less is known about their unique health characteristics and care needs. This may be due largely to lack of a reliable and valid method for ascertaining dementia in large and diverse populations of nursing home residents. Previous work on dementia prevalence in nursing homes suggests that from 25%74% of all residents have dementia (
Garrard et al. 1993
;
Rovner, Kafonek, and Flipp 1986
), with rates for new admissions as high as 67% (
German, Rovner, Burton, Brant, and Clark 1992
;
Rovner et al. 1990
). Methods used to ascertain dementia and estimate prevalence range from review of diagnoses available in medical records, an approach commonly used in large national studies (
Hing, Sekscenski, and Strahan 1989
;
Lair and Lefkowitz 1990
), to direct examination of patients by neurologists and psychiatrists, a strategy that is more frequently used in studies within a single facility or geographically-restricted group of facilities (
German et al. 1992
;
Rovner et al. 1986
,
Rovner et al. 1990
;
Teeter, Garetz, Miller, and Heiland 1976
). The former method has the advantage of being able to obtain information about a diverse array of residents in facilities spread over a large area, but at the expense of a diagnostic standard that is essential for research. Direct evaluation has the potential to overcome this limitation but, due to cost considerations, cannot be used readily to evaluate large numbers of residents dispersed over a wide area. Several studies relying on cognitive testing to characterize residents are instructive and have been successfully used in heterogeneous and geographically dispersed populations (
Chandler and Gerndt 1988
;
Engle and Graney 1993
;
Hartmaier et al. 1995
;
Morris et al. 1994
). They are of questionable value for identifying residents with dementia, however, because cognitive status is only part of a dementia diagnosis and not all residents can be evaluated using this method.
The present study grew out of a need to estimate the prevalence of dementia and understand the distinct care needs of persons with dementia in a large, representative sample of new admissions to nursing homes. These issues are being examined in a study of 2,285 first-time admissions to a stratified, random sample of 59 nursing homes in Maryland. In this report, the study design and method for ascertaining dementia using clinical experts and DSM-III-R diagnostic criteria (
American Psychiatric Association 1987
) are described, and estimates of dementia prevalence and variations in prevalence by selected facility and resident characteristics are provided.
| Methods |
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Nursing Home Recruitment
Subjects were recruited from a stratified random sample of 59 nursing homes in Maryland. The 221 licensed long-term care facilities in Maryland in 1992 were classified into five geographic regions and further divided into three bed-size strata (<50; 50150; >150). Homes were randomly selected and recruited within each of the 15 strata defined by region and bed size such that the proportion of beds represented for each stratum was approximately the same as that stratum's proportion of all beds statewide. A total of 64 facilities were contacted; 4 (6%) refused to participate; one agreeing to participate had no new admissions.
Selection of Nursing Home Residents
All new admissions age 65 years and older who had not resided in any nursing home or chronic care facility for 8 or more days in the previous year were eligible. Admissions were identified by facilities from September 1992 through March 1995; eligibility was determined and consent obtained by project personnel. Nondemented and able subjects provided their own consent; significant others provided consent for their own participation and for residents not able to provide it due to cognitive or other limitations.
Facilities identified 3,851 eligible subjects; for 568 cases (15%), names were received too long after admission for data collection, or data were collected out of the interview timeframe. Of the 3,283 remaining eligible subjects, 2,285 (70%) agreed to enroll. Comparison of the age and sex distributions for enrolled and nonenrolled eligible cases indicated that those enrolled were slightly older (81.5 years vs 80.6 years; p < .001) and more often female (71.6% vs 68.6%; p < .05).
Sources of Information
Data were collected from interviews with residents, nursing staff, and significant others, and medical records which included Minimum Data Set (MDS) evaluations (
Morris et al. 1990
) and hospital discharge summaries. Nurse and resident interviews were conducted 21 days or more after admission to lessen the effect of relocation stress on assessments. Evaluations for residents with fever or acute medical illness were delayed until their condition was resolved. For residents discharged prior to interviewer contact, nursing staff and resident interviews were conducted in the current care setting, and information that would have come from nursing staff was obtained from current care providers. Data for deceased (n = 213) and comatose (n = 6) patients came from nursing staff, family, and medical records. Data were obtained on average 3140 days post-admission (depending upon source); no data were collected more than 65 days following admission. Data were available from two sources for 97% of residents; 83% had data from three to four sources, and 56% had data from all sources. Medical chart information containing admitting notes, medications, nursing notes, and physician orders for the first 21 days of residence was available for 99% of residents.
Diagnosing Dementia
The determination of dementia was made in accordance with DSM-III-R criteria (
American Psychiatric Association 1987
) by an expert panel of geriatric psychiatrists, neurologists, and a geriatrician using detailed information collected from the above mentioned sources by trained lay evaluators. A detailed description of the dementia ascertainment methodology may be found elsewhere (
Magaziner et al. 1996
). Briefly, two panelists rendered independent diagnoses of three possibilities: dementia, no dementia, or indeterminate. The indeterminate designation (which is not recognized in the DSM-III-R) was used when available evidence was inadequate for rendering a diagnostic decision. A larger panel was convened to render a diagnosis if the two panelists disagreed. DSM-III-R criteria for dementia require loss of intellectual abilities of sufficient severity to interfere with social or occupational function, short- and long-term memory impairment, impairment in abstract thinking or judgment or disturbance of higher cortical functioning, and that these cognitive impairments not occur exclusively in the course of delirium. In addition, there must be no evidence of other medical or psychiatric conditions that would render a determination of dementia difficult.
Information used for diagnosis included a history of cognitive and functional decline and current cognitive and functional status, in addition to demographic characteristics, and information about affective, social, and behavioral status. A detailed listing of measures used and data sources appear in the Appendix.
Evaluation of Dementia Determination Methodology
Based on the 2,285 initial psychiatristneurologist paired assessments, between- and within-rater reliability was ascertained for clinicians involved in the diagnostic process. Using a two-category diagnostic scheme in which the nondemented and indeterminate cases were combined, the between-rater kappa was 0.70. To determine a within-rater kappa, each rater was assigned a 10% sample of reassessments to do along with the new cases they were given. For each repeated case, the first assessment was compared with the second; the within-rater kappa was 0.77 for psychiatrists and 0.77 for neurologists. As described elsewhere (
Magaziner et al. 1996
), 100 cases were reviewed by the dementia ascertainment procedures outlined above and examined directly by a geriatrician trained in the assessment of dementia who was not involved in the panel process. Agreement between the assessment made by this procedure and that made by the geriatrician was 83% (kappa = .66) when the no dementia and indeterminate groups were combined to represent a single category of no dementia. Regrouping to include the indeterminate cases with the dementia group also produced an 83% agreement rate.
Other Measures
Each nursing home was characterized by the urbanicity of the county in which it was located using a scale based on Department of Agriculture criteria (
Cohen, Braden, and Ward 1993
;
Coward, Netzer, and Mullens 1996
). Individual homes also were classified by bed size, ownership (private, nonprofit, public), and whether they were part of a chain. Information on medical comorbidities was obtained from informant (significant other) interviews at admission, except for information on body mass index (BMI) and hypertension, which was abstracted from charts. The 12 chronic conditions tallied included presence on admission of: coronary heart disease (CHD), congestive heart failure (CHF), cerebrovascular disease, chronic obstructive pulmonary disease (COPD), liver disease, peripheral vascular disease, seizure disorder, peptic ulcers, arthritis, cancer, low BMI (
20), and uncontrolled hypertension (systolic > 160 or diastolic
90). A modified Katz Activities of Daily Living Scale (
Katz, Ford, Moskowitz, Jackson, and Jaffe 1963
) was derived from adaptations to 14 items in the Psychogeriatric Dependency Rating Scale (PGDRS;
Wilkinson and Graham-White 1980
) on six domains: bathing, dressing, toileting, transfer, continence, and feeding. Each Katz domain was scored dichotomously as dependent versus fully independent; a summary measure was computed by summing the number of domains on which residents were dependent. Selected information from the MDS was used to compare characteristics of residents in the 59 study nursing homes with new admissions to nursing homes in the five states participating in the Nursing Home and Quality Demonstration reporting to the Health Care Financing Administration (
Health Care Financing Administration 1995
).
Statistical Methods
The standard error of the dementia prevalence rate was corrected for cluster sampling (nursing homes rather than individuals) using the intracluster correlation as described by
Kish 1965
. The association between a given facility or resident characteristic and dementia was determined from odds ratios that were derived from a logistic regression model. The dependent variable was based on the dichotomy of demented versus nondemented or indeterminate. To adjust the association for age, the resident's age at admission was included in the model. Confidence intervals on the odds ratios were derived from the standard errors of the logistic regression coefficients, corrected for cluster sampling (
Liang and Zeger 1986
).
| Results |
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Prevalence of Dementia
A diagnosis of dementia was made by the expert panel for 48.2% of new nursing home admissions (Table 2 ). Nondemented residents accounted for 31.5% of new admissions, and 20.3% of cases could not be assigned a diagnosis and were designated as indeterminate. Indeterminate designations were made due to: missing information from resident, significant other, or nurse (n = 353; 76% of their group), mild severity indicated by uncertainty about whether there was "loss of intellectual abilities of sufficient severity to interfere with social or occupational function" (
American Psychiatric Association 1987
; n = 278; 60%), and the presence of delirium or other confounding medical conditions (e.g., stroke, cardiovascular disease; n = 394; 85%). Of the 464 cases designated as indeterminate, 144 had been designated as demented by at least one of the two initial expert reviewers. Adding these cases to the 1,011 cases of dementia designated by the panel review suggests an upper bound for the prevalence of dementia of 54.5%.
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Heterogeneity in Comorbidity and Physical Functioning
Those with a diagnosis of dementia on admission are a heterogeneous group with respect to comorbid status and functioning (Table 4 ). Seven percent had no major comorbid conditions; 18.7% had only one comorbidity; 27.2% had two comorbid conditions; and 47% had three or more. Dependency status of those with dementia also varied considerably, with 10.8% having one or fewer areas of dependency and 72.8% dependent in four areas. When bathing and dressing dependencies are not considered (residents are frequently assisted with these regardless of their dependency status), 24.6% of those admitted with dementia had none or one dependency and 33.4% were dependent in all of the remaining four areas (toileting, transfer, continence, feeding). This compares with the combined nondemented and indeterminate groups where 43.6% had one or fewer dependencies (excluding bathing and dressing) and 20.6% were dependent in the remaining four tasks (96.4% of demented and 62.6% of nondemented and indeterminate cases received bathing assistance; 84.1% of demented and 49.2% of nondemented and indeterminate cases received assistance with dressing). In fact, 6.5% of those with dementia and 12.3% of those without dementia had no more than one comorbid condition and no more than one limitation in physical functioning, after bathing and dressing tasks were excluded. There also was considerable overlap in the comorbid status of demented and nondemented admissions, and although the demented were more impaired than the nondemented in functional dependency, neither group was homogeneous and both included persons with varying numbers of functional dependencies.
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| Discussion |
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Estimating the prevalence of dementia in a population using standardized criteria requiring evaluation by clinical experts is inherently difficult. Additional challenges added by studying a nursing home population include the difficulty of having residents travel to a central site for diagnosis and a high prevalence, which makes a multistage screening and clinical diagnosis process costly and hard to implement. An added problem in this study of new admissions was the need to evaluate residents shortly after admission. The use of an expert panel of neurologists, psychiatrists, and a geriatrician to review information varying in quantity and quality from medical records, residents, family members, and nursing staff proved feasible, reliable, and consistent with those of a clinician making a direct assessment using the same diagnostic criteria. The panel relied on DSM-III-R criteria for dementia. Had other criteria been used, the prevalence rates may have been different (
Erkinjuntti, Ostbye, Steenhuis and Hachinski 1997
).
The prevalence of dementia in new admissions differs by facility size, location, ownership, and affiliation: Rates are higher in those admitted to nursing homes that are smaller, not part of a chain, in urban or suburban areas, and publicly owned. Although not evaluated in this study, these differences may reflect differences in case mix whereby larger facilities and those that are privately owned, part of a chain, and in urban areas are more likely to have a disproportionate number of admissions for rehabilitation care.
Many of the differences in prevalence by resident characteristics were as expected: Rates were higher among those who were older, more poorly educated, and at lower levels of physical function. Although studies characterizing new admissions are few, these distinctions are consistent with studies of cross-sections of nursing home residents (
Adolfsson, Gottfries, Nystrom, and Winblad 1981
;
Burns et al. 1988
;
German et al. 1992
;
Holstein, Chatellier, Piette, and Moulias 1994
;
Manton, Cornelius, and Woodbury 1995
;
Rovner et al. 1990
;
Teeter et al. 1976
). The lower rates of dementia in those with a greater number of comorbid conditions are consistent with cross-sectional studies of nursing home residents (
Holstein et al. 1994
;
Magaziner et al. 1998
). Rates also were higher among those who were non-White and married. Taken together, these results suggest that there are multiple reasons for entering a nursing home, with some entering for disease management and assistance with tasks of daily living, and others for care of other problems associated with dementia.
The similarities and differences in functional capabilities and comorbid conditions among those entering a nursing home with and without a dementia diagnosis are consistent with those observed in a national cross-section of nursing home residents (
Magaziner et al. 1998
). Three issues are particularly relevant and may have implications for choosing the most appropriate care settings for these groups. First, there is considerable overlap in the physical health and functional limitations of demented and nondemented new admissions, suggesting that they have many similar care requirements. Second, those with dementia on admission are a heterogeneous group, suggesting that those with dementia require a range of care. Third, there are subgroups of demented and nondemented new admissions with relatively few medical comorbidities and functional limitations, suggesting that the level of care available in nursing homes may not be required for some residents.
Several residential options are currently available for persons with dementia; others are emerging. These include the traditional nursing home (the setting of the current study), special dementia care units in nursing homes, and other residential care settings such as board-and-care homes and assisted living facilities. Living arrangements continually change over a person's life cycle to conform to changing individual and family needs (
Michelson 1970
). Long-term care residence is an important part of this ongoing process. The traditional nursing home is at one end of the long-term care continuum. Special care units in nursing homes may add care components to accommodate residents with dementia. Results of the present study suggest that designers of these units need to recognize the variability of demented residents so that this form of care does not remain uniform and the special elements of care can target those residents most likely to benefit. Other modes of residential long-term care have been proliferating (
Brown and Hawes 1994
;
Eckert and Murrey 1984
;
Hawes, Wildfire, and Lux 1993
;
Lawton 1981
;
Mor, Sherwood, and Gutkin 1986
) and may be better suited to those not requiring the intensive array of services provided in nursing homes, a small but noticeable group in the present study of nursing home admissions.
The present study is of nursing home residents in a single state; although residents studied are similar to those admitted to nursing homes elsewhere in the United States, caution is required when attempting to generalize results beyond Maryland. Another potential limitation of this study is that some resident characteristics, such as comorbidity, may be reported differently for persons with dementia. While not eliminated, this source of bias is minimized by not obtaining data directly from any residents (with the exceptions of cognitive status and symptoms of depression) and relying on the same sources to obtain all study information.
The present study has many advantages that are important for broadening our understanding of older persons with dementia and the long-term care they require. The diagnostic strategy, while imperfect, is based on clinicians' evaluations of evidence using DSM-III-R criteria, a widely accepted diagnostic standard. One benefit of this approach is that it could be applied in a uniform manner to persons entering nursing homes across an entire state, permitting inclusion of nursing homes varying in size, location, and ownership, and containing a broad mix of residents. A potential limitation of this method is that residents were not followed for additional information to confirm diagnoses, and approximately one fifth could not be classified confidently as demented or nondemented. Consideration was given to "forcing" panelists to classify these "indeterminate" residents as either demented or nondemented as was done in other studies relying on expert panels (
Breitner et al. 1995
;
Kukull et al. 1990
;
Solari et al. 1994
). Instead, a more conservative strategy was chosen, allowing for greater confidence in the diagnoses that were made. To the extent that some dementia cases are included within the indeterminate group, our prevalence estimates are low. This has been accounted for, in part, by estimating an upper bound for prevalence that includes interdeterminate cases where one panelist originally saw evidence of dementia. While the diagnostic strategy used in this study may not be appropriate for making individual treatment decisions, it is useful for estimating prevalence, monitoring the care of large groups of residents with dementia, and making planning and policy decisions. It also may be useful for identifying likely candidates for further clinical workup.
Identifying persons with dementia in a representative sample of new nursing home admissions represents an important first step in addressing the many issues in care required by this group, how this care differs from the care required by those without dementia, and the most appropriate setting in which to deliver this care to both groups. The present study indicates that approximately half of all persons 65 years and older entering a nursing home for the first time have dementia. Additional studies of health and health care sequelae of persons entering nursing homes and other long-term care settings are needed.
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| Acknowledgments |
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Received for publication August 4, 1999. Accepted for publication May 22, 2000.
| Appendix ENDIX |
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| References |
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