| HOME | ARCHIVE | SEARCH | TABLE OF CONTENTS |
|---|
| ||||||||||||||||||||||||||||||||
a Gerontology and Geriatrics Research Centre, Sherbrooke, Quebec, Canada
b McGill University, Montreal, Quebec, Canada
c McMaster University, Hamilton, Ontario, Canada
d University of Toronto, Toronto, Ontario, Canada
Réjean Hébert, Sherbrooke Geriatric University Institute, 1036 Belvédère Sud, Sherbrooke, Québec J1H 4C4, Canada E-mail: rhebert{at}courrier.usherb.ca.
Decision Editor: John E. Morley, MB, BCh
| Abstract |
|---|
|
|
|---|
Methods. Informal caregivers of 326 individuals with dementia living in the community were identified and interviewed as part of the Canadian Study of Health and Aging (CSHA). These subjects were contacted again 2.5 and 5 years after the baseline interview to collect information on the status of their care recipients. Survival analyses using clinical data for the individuals with dementia and data from the interviews with their informal caregivers were carried out using Cox proportional hazard modeling to estimate the hazard ratio (HR).
Results. Over the 5-year period, 166 individuals with dementia (50.9%) were institutionalized and the median time to admission was 41 months. From the multivariate analysis, the factors significantly associated with institutionalization were: type of dementia (Alzheimer's disease: HR = 1.83), severity of disability (mild: 1.51; moderate: 2.34; total impairment: 4.02), caregiver's age over 60 (1.83), caregiver not a spouse or child (1.55), and severe caregiver burden (1.71). Caregiver's burden was associated with the care-receiver's behavioral disturbance (partial r = .55) and the caregiver's depressive mood (r = .55).
Conclusions. Screening caregivers for burden and depression and designing interventions to decrease the consequences of behavioral disturbance on caregivers would be relevant avenues to explore to decrease institutionalization of people with dementia.
MORE than 8% of people over the age of 65 suffer from Alzheimer's disease or other dementing illnesses (1). The prevalence climbs to more than 34% for those over 85 years of age. With the aging of the population and the baby boom cohort in Canada, the absolute number of individuals with dementia will increase dramatically, challenging health care systems. Dementia is associated with substantial costs (2), primarily due to institutionalization that will occur sooner or later during the course of the disease for the majority of sufferers. Whenever possible, however, it is preferable for these patients to remain in their homes, not only for economic reasons, but also because in doing so they are able to maintain the integrity of their social network, preserve environmental landmarks, and enjoy a better quality of life. Caring for these patients at home, however, is associated with a burden on the caregivers that jeopardizes the viability of continued home care. It is unclear at what point institutionalization becomes inevitable, and it is thus important to identify those factors associated with long-term institutionalization in order to design health and social strategies not only to permit those with dementia to stay in their homes as long as is feasible but also to ensure that steps are taken for timely institutionalization when appropriate.
Many factors have been identified as being associated with the institutionalization of elderly people with dementia (3)(4). Some are related to the characteristics of the patient: i.e., severity of dementia, severity of disabilities, and behavior problems; while others are associated with characteristics of the caregivers: i.e., the burden of caregiving, physical health, and use of services. However, most studies carried out to date suffer from important limitations. All were carried out using samples of subjects with dementia either recruited from specialized clinics or Alzheimer's organizations or on a voluntary basis. Such convenience samples are likely to result in selection bias (varying by type of sample) and not be representative of the general population of dementia sufferers. Furthermore, a number of studies had relatively small sample sizes and/or followed subjects for a limited length of time, limiting the statistical power of the study. Yet others considered only a few potential factors related to patient or caregiver characteristics. The Canadian Study of Health and Aging (CSHA) is a population-based study that generated a large population-based sample of individuals with dementia living at home (1). Both the patients and their caregivers were assessed at baseline using a battery of standardized instruments and followed for 5 years. The objective of this article is to identify the factors leading to long-term institutionalization for elderly people with dementia.
| Methods |
|---|
|
|
|---|
For each individual with dementia, a primary informal caregiver was identified after discussion with the subject and his or her family. The primary informal caregiver was defined as the unpaid person perceived by the subject with dementia or the family as ordinarily being most responsible for the day-to-day decision making and provision of care to the individual with dementia. Caregivers who did not understand English or French were excluded.
Caregivers were interviewed by trained interviewers, typically in the caregiver's home. Sociodemographic data including age, sex, marital status, living arrangements, kinship tie to the person with dementia, number of health problems, and employment status were collected. The need of the person with dementia for assistance in activities of daily living (ADL) was assessed with the 14-item scale developed for the Older Americans Resources and Services project (11). A weighted four-category scale indicating the amount of assistance required (no impairment, mild, moderate/severe, total impairment) was constructed (11). Behavior problems experienced by the subject with dementia were assessed with the Dementia Behavior Disturbance (DBD) scale (12). Each item on this 28-item scale represents a behavior that the caregiver is invited to score according to its frequency over the previous week on a scale from 0 (never) to 4 (all the time). A total score out of 112 is calculated. The caregiver's depression was assessed by the Center for Epidemiologic Studies Depression scale (CES-D; (13),(14)). This scale rates the frequency of 20 depressive symptoms during the previous week on a 4-point scale (0 to 3). The health problems experienced by the caregiver were also recorded. Caregiver burden was evaluated using the Zarit Burden Interview (ZBI; (15)), a 22-item questionnaire. Each item represents a feeling for which the subject is invited to score the frequency of occurrence on a 5-point scale ranging from 0 (never) to 4 (nearly always). A total score out of 88 can be calculated. From the CSHA data, Hébert and colleagues (16) showed that scores 18 and over represent severe burden (third quartile) and scores over 32 represent extreme burden (fourth quartile). The caregiver's desire to institutionalize was first explored with a general question, "Have you ever thought of placing your relative in an institution?" Answers were scored on a 4-point scale from "not at all" to "seriously." Caregivers were then asked if they had discussed institutionalization with someone, visited an institution, or applied for placement (yes or no). This generated a 3-point scale: 1, never thought (or did not think seriously) about it; 2, thought seriously or very seriously about it, discussed it with someone, or visited an institution; and 3, applied for placement.
The subjects with dementia or their caregivers were contacted by phone 2.5 years after the baseline assessment. Surviving subjects and their caregivers were reassessed again 5 years after the initial assessment. For those study subjects who had died since the baseline assessment, an interview was conducted with the caregivers of decedents. During these two contacts, information was collected on dates of death or dates of admission to a long-term institution. When the exact dates were missing, a standardized procedure for imputation was applied using the middle of the range of plausible dates for the occurrence of the event (17). An institution was defined as a dwelling that offers some form of formal supervision. The definition includes nursing homes, homes for the aged, hospital stays longer than 3 months, chronic care beds, and psychiatric institutions. Temporary admission for convalescence or rehabilitation was not considered institutionalization.
Analysis
Bivariate analyses were first performed to investigate the prognostic value of each variable related to the subjects with dementia and those gathered from the caregivers. Survival analyses using Cox proportional hazard regression were carried out to identify factors associated with the time to institutionalization. Time to event was measured in months from the date of the baseline assessment to either the date of admission to an institution, the date of death (without prior institutionalization), or the date of the last contact. Subjects who died at home as well as subjects still at home after 5 years or lost to follow-up were treated as censored observations. Recognizing that death is a competing risk (18), we used the baseline ADL rating as a control variable in all analyses making the assumption that, conditional on the ADL rating, censoring was noninformative. Variables with p values <.15 were included in the multivariate analysis. A backward elimination procedure, controlled by the investigator and based on the likelihood ratio test, was applied to delete variables that ceased to be statistically significant (p > .05) in the presence of others. Graphical displays and diagnostic statistics were examined to check for violation of the proportionality assumption and detect the presence of influential observations (19). Suspecting from previous analyses (16) that burden and desire to institutionalize were intermediate variables, supplementary analyses were performed to describe their correlates and complete the model. For burden, a linear multivariate regression analysis was carried out, and for desire to institutionalize, a logistic multivariate regression analysis was carried out contrasting those who never thought seriously of placing their relative (score = 1) and those who had thought or had done something about it (scores = 2 and 3). All reported p values are two-sided. Data analysis was performed with the SAS System (SAS Institute, Cary, NC) for Windows, version 6.12.
| Results |
|---|
|
|
|---|
|
|
|
|
|
| Discussion |
|---|
|
|
|---|
= 0.05) of an HR over 1.5 to 2.0, with a power of 80% depending on the proportion of subjects exposed to each factor. It must be acknowledged, however, that this study was carried out in Canada in the context of a public and universal health care system that includes coverage for long-term care institutions. Thus the generalizability of the results to other health care systems is not guaranteed. In this study, the median time to institutionalization was 41 months, which is very similar to that of previous studies by Heyman and colleagues ((20); around 42 months), Drachman and colleagues ((21); 39 months) and O'Donnell and colleagues ((22); more than 36 months). The present study also confirms other results that institutionalization is related more to the severity of disabilities experienced by the subjects with dementia (20)(23)(24)(25)(26)(27)(28)(29)(30) than to the severity of dementia or cognitive impairment. However, the association between Alzheimer's disease and risk for institutionalization has been previously reported only by Scott and colleagues (25) using a large sample of subjects (N = 786) followed for 19 months. This is surprising given that Alzheimer's disease is associated with longer survival than vascular dementia and that there are well-structured support organizations dedicated to subjects with Alzheimer's disease and their caregivers as opposed to other types of dementia.
The fact that the risk for institutionalization was significantly higher in three regions of Canada than in Ontario and the Atlantic provinces is striking. This can be related to the availability of home-care services and long-term care beds. With the exception of Prince Edward Island and Manitoba (which constituted less than 25% of the Atlantic and Prairies region samples, respectively), the percentage of public expenditure and the per capita funding for home care are higher in Ontario and the Atlantic provinces than in the rest of Canada (31). Also, the Atlantic provinces and Ontario showed a lower rate of institutionalized elderly people (6.0 to 6.7%) than the national rate of 7.3%, according to the 1996 Canadian census (32).
This study confirms that caregiver burden is a strong predictor of institutionalization (28)(30)(33)(34)(35)(36)(37)(38). The ZBI used in this and other previous studies (30)(33)(34) appears to be a good screening instrument for clinicians to identify caregivers at risk of giving up the home care of their family members with dementia. The shorter 12-item version proposed previously (16) showed the same HR (1.71) as the original version for scores associated with severe burden (more than 8 out of 48). Older caregivers were more at risk for giving up home care as previously reported by Nygaard (36). The fact that having a spouse as caregiver is a protective factor from institutionalization was also found by Colerick and George (39) and Scott (25) and is probably explained by the emotional link between the caregiver and the care-receiver. According to our data, the same is true for being a child as opposed to Scott's study that showed a significant risk for the parent (adjusted odds ratio: 4.8) associated with being a child compared to being a spouse. Poor physical health of the caregiver is also an important short-term risk factor and this confirms the findings of previous studies (33)(34).
Caregiver burden was more strongly correlated with the depressive mood of the caregiver and the behavior problems of the subjects with dementia than to cognitive or functional impairments or the severity of the dementia. This is consistent with most previous studies (30)(40)(41)(42)(43) and with studies that have shown that the psychological problems of the caregivers are more strongly associated with behavior problems than with functional or cognitive impairments (44).
The intermediate role of the desire to institutionalize is consistent with many studies that showed that this variable is a short-term predictor of institutionalization (34)(36)(45) and other studies reporting that this variable is associated with the severity of cognitive impairment (46), the caregiver's burden (34)(46), and the utilization of services (34).
When these three sets of analyses are considered together, we can propose the model summarized in Fig. 3. That is, institutionalization is determined by the type of dementia (i.e., Alzheimer's disease), the severity of disability, the age and kinship (not a child or spouse) of the caregiver, together with health problems and the level of burden experienced by the caregiver. Burden itself is often the result of behavior problems and is associated with the caregiver's depressive mood. The desire to institutionalize is related to the severity of dementia, the fact that the dementia sufferer cannot be left alone and that the caregiver lives with him or her, the caregiver burden, and the use of two or more home care services.
|
| Acknowledgments |
|---|
Received October 23, 2000
Accepted October 25, 2000
| References |
|---|
|
|
|---|
This article has been cited by other articles:
![]() |
E. Grundy and M. Jitlal Socio-demographic variations in moves to institutional care 1991 2001: a record linkage study from England and Wales Age Ageing, July 1, 2007; 36(4): 424 - 430. [Abstract] [Full Text] [PDF] |
||||
![]() |
M. Pinquart and S. Sorensen Correlates of Physical Health of Informal Caregivers: A Meta-Analysis J. Gerontol. B. Psychol. Sci. Soc. Sci., March 1, 2007; 62(2): P126 - P137. [Abstract] [Full Text] [PDF] |
||||
![]() |
M. S. Mittelman, W. E. Haley, O. J. Clay, and D. L. Roth Improving caregiver well-being delays nursing home placement of patients with Alzheimer disease. Neurology, November 14, 2006; 67(9): 1592 - 1599. [Abstract] [Full Text] [PDF] |
||||
![]() |
M. J. McClendon, K. A. Smyth, and M. M. Neundorfer Long-term-care placement and survival of persons with Alzheimer's disease. J. Gerontol. B. Psychol. Sci. Soc. Sci., July 1, 2006; 61(4): P220 - P227. [Abstract] [Full Text] [PDF] |
||||
![]() |
G. T. Buhr, M. Kuchibhatla, and E. C. Clipp Caregivers' Reasons for Nursing Home Placement: Clues for Improving Discussions With Families Prior to the Transition Gerontologist, February 1, 2006; 46(1): 52 - 61. [Abstract] [Full Text] [PDF] |
||||
![]() |
D. W. Gilley, J. J. McCann, J. L. Bienias, and D. A. Evans Caregiver Psychological Adjustment and Institutionalization of Persons With Alzheimer's Disease J Aging Health, April 1, 2005; 17(2): 172 - 189. [Abstract] [PDF] |
||||
![]() |
R. Schulz, S. H. Belle, S. J. Czaja, K. A. McGinnis, A. Stevens, and S. Zhang Long-term Care Placement of Dementia Patients and Caregiver Health and Well-being JAMA, August 25, 2004; 292(8): 961 - 967. [Abstract] [Full Text] [PDF] |
||||
![]() |
L. Volicer and A. C. Hurley Review Article: Management of Behavioral Symptoms in Progressive Degenerative Dementias J. Gerontol. A Biol. Sci. Med. Sci., September 1, 2003; 58(9): M837 - 845. [Abstract] [Full Text] [PDF] |
||||
![]() |
M. Nuotio, T. L. J. Tammela, T. Luukkaala, and M. Jylha Predictors of Institutionalization in an Older Population During a 13-Year Period: The Effect of Urge Incontinence J. Gerontol. A Biol. Sci. Med. Sci., August 1, 2003; 58(8): M756 - 762. [Abstract] [Full Text] [PDF] |
||||
![]() |
D.-C. Chan, J. D. Kasper, B. S. Black, and P. V. Rabins Presence of Behavioral and Psychological Symptoms Predicts Nursing Home Placement in Community-Dwelling Elders With Cognitive Impairment in Univariate But Not Multivariate Analysis J. Gerontol. A Biol. Sci. Med. Sci., June 1, 2003; 58(6): M548 - 554. [Abstract] [Full Text] [PDF] |
||||
![]() |
W. A. Banks and J. E. Morley Memories Are Made of This: Recent Advances in Understanding Cognitive Impairments and Dementia J. Gerontol. A Biol. Sci. Med. Sci., April 1, 2003; 58(4): M314 - 321. [Full Text] [PDF] |
||||
![]() |
M. Broe, J.R. Hodges, E. Schofield, C.E. Shepherd, J.J. Kril, and G.M. Halliday Staging disease severity in pathologically confirmed cases of frontotemporal dementia Neurology, March 25, 2003; 60(6): 1005 - 1011. [Abstract] [Full Text] [PDF] |
||||
![]() |
J. E. Morley Editorial: Hot Topics in Geriatrics J. Gerontol. A Biol. Sci. Med. Sci., January 1, 2003; 58(1): M30 - 36. [Full Text] [PDF] |
||||
![]() |
R. Hebert, L. Levesque, J. Vezina, J.-P. Lavoie, F. Ducharme, C. Gendron, M. Preville, L. Voyer, and M.-F. Dubois Efficacy of a Psychoeducative Group Program for Caregivers of Demented Persons Living at Home: A Randomized Controlled Trial J. Gerontol. B. Psychol. Sci. Soc. Sci., January 1, 2003; 58(1): S58 - 67. [Abstract] [Full Text] [PDF] |
||||
| ||||||||||||||||||||||||||||||||
| HOME | ARCHIVE | SEARCH | TABLE OF CONTENTS |
|---|