0895-4356/92 $5.00 + 0.00 Copyright 0 1992 Pergamon Press Ltd
J CUo Epidemiol Vol. 45, No. 8, pp. 861-870, 1992 Printed in Great Britain. All rights reserved
HEALTH AND SOCIAL CONSEQUENCES FOR RELATIVES OF DEMENTED AND NON-DEMENTED ELDERLY. A POPULATION-BASED STUDY MARGARETA GRAFSTR~M,‘*
LAURA FRATIGLIONI,’ P-O.
SANDMAN*
and
BENGT WINBLAD’ ‘Stockholm Gerontology Research Center and Department of Geriatric Medicine, Karolinska Institute, Stockholm and ‘Department of Advanced Nursing, University of Umel, Umel, Sweden (Received II February 1992)
Abstract-A population-based study was performed to investigate the subjective and objective burden due to caring for a demented relative. All the relatives of the subjects with cognitive impairment, detected in a district of Stockholm, living at home, were included in the study. When compared with relatives of elderly, mentally healthy persons
living at home in the same district, they had high ORs for subjective burden and for use of psychotropic drugs. Spouses were the most stressed. However, the ORs for use of medical facilities and somatic drugs were close to unity, showing that caring for a demented person did not affect the physical health of the relative. A second comparison between relatives of demented persons living at home and in institutions, showed that the relatives of institutionalized subjects were less frequently spouses and had more
problems with their physical health, but both groups had similar subjective feeling of stress. Family burden based study
Relatives
Dementia
INTRODUCTION
As in many other western countries, in Sweden there is an increasing number of elderly persons in the population, many of whom will reach a very advanced age [l]. As a consequence, the absolute number of age-related diseases, like dementia, will increase [2]. Dementia is a problematic disease, not only within the scientific field, but also for the organization of health care. Among the problems caused by this disease, one of the foremost is the burden borne by the relatives of the demented persons [3]. Changing personality as the disease
*All correspondence should he addressed to: Margareta Grafstriim, Stockholm Gerontology Research Center, Dalagatan 9-11, S-l 1382 Stockholm, Sweden. [Tel: +46 8 349500 ext. 2028; Fax: +46 8 3352751
Elderly care
Caregiver
Population-
progresses, changing behaviour, deterioration of memory, concentration and other cognitive functions make the daily life of the relatives of the elderly person very strained. Previous studies have shown the magnitude of this problem [4-71. In particular, it has been reported that caregivers experience high levels of depression, anxiety, social isolation and stress related physical symptoms [8,9]. On the other hand, other studies have failed to show any increased medical problems among those who take care of demented persons. These controversial data were discussed in a review by Baumgarten, 1989 [lo], who emphasized that some of the results from previous studies were hampered by methodological problems: lack of a control group, selection of the subjects from hospitals or geriatric centres, and presence of confounders. 861
862
MARGARETA GRAFSTR~Met al.
In order to investigate the consequences due to the presence of a demented person in the family, and to individuate the needs of medical and social assistance, we carried out a population-based study on the psychosocial situation of the relatives of demented persons. The first aim of this paper was to verify whether the presence of a demented person living at home affects the psychological and physical health of relatives, when their health is compared with the status of relatives of non-demented elderly people. The second aim was to study the difference in the psychological and physical stress between relatives of demented persons living at home and those of demented persons living in Specifically, we analysed the institutions. relative risks of psychological and physical strain in the relatives for both comparisons
(relatives of demented subjects living at home compared with relatives of non-demented subjects; relatives of demented subjects living at home compared with relatives of demented subjects living in institutions). METHODS
Subjects This study is a part of the Kungsholmen Project which is a longitudinal study on aging and dementia, being carried out in Stockholm. The study population of the Project [l l] consists of all the inhabitants of a central area of Stockholm in October 1987, born in 1912 and earlier: 2368 subjects, 76% female (Table 1). First, the whole population was assessed with a short cognitive test, called Mini Mental State
Table 1. Relatives of demented and non-demented subjects included in the study recruited from the Kungsholmen Project, and drop-outs by causes
I
I
2366 inhabitants of Kungsholmen
52
lived alone
Study sample
I
relatives of non-
Drop-outs The demented refused The demented moved The relatives refused
Drop-outs 60 9 2
t
The non-dement.refused The non-dement.moved The relatives refused
59 6 4
Health and Social Consequences for Relatives of Demented Elderly
Examination (MMSE) [12]. MMSE was used as a screening test in order to discriminate between subjects with (score ~23) and those without cognitive impairments (score 224). All the subjects with MMSE ~23 and a sample of subjects with MMSE 2 24 were then extensively evaluated to reach a clinical diagnosis of Alzheimer’s disease (AD) or other dementias, according to DSM III-R diagnostic criteria, with some modifications [13, 141. The sample was selected from all the subjects who had MMSE score ~24, matched by gender and age with the subjects who had MMSE score ~23. The relatives of the subjects of these two groups were included in the present study (Table 1). The cognitively impaired subjects (here named “demented subjects”) were considered as a possible cause of psychological and physical strain on their relatives. A demented person was defined as a subject with MMSE 24 were really demented [14]. In this study, the functional aspect is preferred to the exact clinical diagnosis of dementia. The outcomes of the study are the consequences for the health and social life of the relatives who take care of demented subjects. We used subjective and objective measures to define the outcomes. No standardized scales were used in order to check the psychological stress and the social limitation, as the subjective feelings were the endpoint. The use of drugs and medical facilities were considered as an objective measure of psychological and physical health status. All the variables examined in our study are included in the conceptual model of caregivers’ stress, suggested by Pearlin et al., 1990 [17]. This model describes the caregiver’s stress as the final endpoint of a process which comprises many interrelated conditions such as socioeconomic characteristics, resources of caregivers, primary and secondary stressors. Among the variables suggested by the model as background and context, we took into account in our study the socioeconomical situation (education and profession of the relatives) and caregiver history (type of kinship and cohabitation). Cognitive status measured with the MMSE was the only primary stressor that we studied and no secondary role strains or mediators were examined. Among the outcomes suggested by that model, subjective feeling of stress and physical health were investigated. In conclusion, our data investigate the basic part of the complex chain of events that determines the caregiver’s burden, as described in that model. The main results of our study can be summarized in the following points:
(1) Demented persons are more frequently institutionalized than non-demented subjects of the same age. Demented persons living in institutions, less frequently have living spouses than demented persons living at home. The lack of a spouse seems a possible cause of institutionalization. (2) Relatives of demended persons living at home feel psychologically stressed and limited in their affective and social life more frequently than relatives of non-demented elderly. Other controlled studies reported similar results. Haley et al., 1987 [18] reported lower overall life satisfaction, a higher level of depression and impaired social and affective life. Eagles et al., 1987 [19] found higher scores on the Relative’s Stress and Relative’s Mood Scale, and George and Gwyther, 1986 [20], reported symptoms of stress nearly three times more frequently. (3) Relatives of demented subjects living at home use psychotropic drugs more frequently than relatives of non-demented elderly. These data are in agreement with a recent study of Clipp et al., 1990 [21], who found the use of psychotropic drugs among the caregivers of demented subjects substantially higher than previously reported prevalence rates in the general population, and among the elderly living in the community. (4) Relatives of demented persons judge their own health to be worse than do the relatives of the elderly non-demented subjects, but they do not use drugs for somatic disorders or medical facilities more frequently than does the reference group. Adult children of demented subjects are the only exception (see point 5). Data from other controlled studies are controversial. George and Gwyther, 1986 [20], in a survey found that caregivers appeared similar to other populations in physical health and they did not use more medical services (in agreement with our results), but they did not rate their health worse than random community samples (contrary to our data). In disagreement with our results, Haley et al., 1987 [18], found a higher number of medical visits and more use of medical prescriptions among relatives of demented people. However, the two groups of relatives compared were not balanced for social level which could have biased the results.
Health and Social Consequences for Relatives of Demented Elderly
(5) Taking into account the different types of kinship, spouses show the highest ORs for subjective burden, especially for limitation of social life. These results disagree with those reported by Eagles, 1987 [22], who did not find any difference between spouses of demented and non-demented subjects with regard to psychological health, but only mild cases were included in their study. In contrast, our data agree with George and Gwyther, 1986 [20], who found a higher stress situation for the spouses, after adjustment for age of the relatives. The children are the only group of relatives who show a clearly increased use of and somatic drugs. As psychotropic expected, the distant relatives less frequently reported stressful burden or limitations in their affective life. (6) In the second comparison, we found that the relatives of demented subjects living at home use more psychotropic drugs than the relatives of demented persons living in institutions. However, they have similar feelings of stressful situation and lower use of somatic drugs and medical facilities. These data suggest that the poor physical status of the caregiver could have been the cause of the institutionalization of the demented person. However, a causal relation between the presence of the demented person in the family, and the poor physical status of the relative cannot be detected with our crosssectional data. When different types of kinship were analysed, the group of more distant relatives has a high OR for feeling psychologically stressed, while all the other relatives show ORs close to unity. It seems that this is the only group which can benefit from the institutionalization of demented subjects, at least from a subjective point of view. In our opinion, it is unlikely that confounders could have heavily affected our results. First, the demented and non-demented groups were matched by age and gender. Second, variables such as age, sex, education and profession of the relatives as well as cohabitation with the elderly subjects were controlled both by checking their balance between the index and reference groups and by performing a multiple logistic regression analysis. Our study is limited by the fact that it is based on cross-sectional data. In a cross-sectional
869
survey, it is not possible to detect a correct temporal sequence between a possible cause and its effect, but this point applies only to some study outcomes. Secondly, selection biases due to “survivors” may be present. That is to say, relatives detected in a cross-sectional study can represent only the most resistant or particularly healthy relatives, while the others have been lost as caregivers, before the onset of research. One possibility of controlling for the effects of this potential bias is given by the second comparison between relatives of demented persons living at home and relatives of demented persons living in institutions. Finally, in a cross-sectional study it is not possible to study modification of the strain during the development of dementia. If we consider institutionalization as the last step in a process [23], the second comparison can give us some information about the process itself. We cannot rule out the possibility that our results have been affected by the drop-outs (24% in the demented group and 22% in the non-demented group). The drop-outs were due to refusal by, or moving of, the demented or non-demented persons. Only two relatives in the index group and four relatives in the first reference group actually refused to participate. It is understandable and likely that people with initial symptoms of dementia are aware of some stressful situation at home. Therefore, they are more prone to refuse the interviewing of a relative, even if this person is chosen by themselves. As the drop-outs were less severely demented than the subjects included and most of them lived at home, they have probably affected our results towards an underestimation of the ORs. In conclusion, caregivers of demented persons living at home show that they experience a very stressful burden, and the spouses are those who are most affected. Correspondence in the objective burden of these stressful feelings is the increased use of psychotropic drugs. However, relatives are not physically affected by caring for demented persons as shown by the fact that they use somatic drugs and medical facilities as much as the reference group does. The lack of a spouse and the bad health status of the caregiver seem important determinants of the institutionalization of a demented person. However, the institutionalization itself does not take away from the closest relatives any subjective feeling of a stressful situation, although the use of psychotropic drugs seems to decrease.
870
MARGARETA GRAFSTR~Met al.
Although results derive from a controlled to what extent our study, we wonder conclusions could be generalized for societies with different lifestyles and socio-medical organization. The presence of a reference group is not sufficient to eliminate the influence of different social networks on the health and social consequences of a relative of a demented person. Finally, the complex situation of caregiving, especially in its psychological aspects, can be fully explained only by further, longitudinal data. Acknowledgements-This study was supported by the Swedish Council for Social Research, Swedish Medical Research Council, Karolinska Institute Foundation, Ake W&erg’s Foundation and grants from private persons.
9. Given CW, Collins CE, Given BA. Sources of stress 10. 11 ’
12 ’
13.
14.
15. REFERENCES 16. 1. SCB. Statistical Abstract of Sweden 1990. Stockholm: Statistics Sweden; 1991. 2. Jorm AF, Korten AE, Jacomb PA. Projected increases in the number of dementia cases for 29 developed countries: application of a new method for making projections. Acta Psychiat Stand 1988; 78: 493-500. 3. Zarit SH. Do we need another “stress and caregiving” study? Gerontologist 1989; 29: 147-148. 4. Nygaard HA. Strain on caregivers of demented elderly people living at home. Scand J Rim Health Care 1988; 6: 33-37. 5. Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: Correlates of feelings of burden. Gerontologist 1980; 20: 649-655. 6. Pruchno RA, Resch NL. Husbands and wives as caregivers: Antecedents of depression and burden. Gerontologist 1989; 29: 159-165. 7. Dillehay RC, Sandys MR. Caregivers for Alzheimer’s patients: What we are learning from research. Int J Aging and Human Development 1990; 30: 263-285. 8. Becker J, Morrissey E. Difficulties in assessing depressive-like reactions to chronic severe external stress as exemplified by spouse caregivers of Alzheimer patients. Psycho1 Aging 1988; 3: 300-306.
17.
18.
19.
20.
21.
22.
23.
among families caring for relatives with Alzheimer’s disease. Nom CIIn N Am 1988: 23: 69-82. Baumgarten M. The health of persons giving care to the demented elderly: A critical review of the literature. J Clin Epidemiol 1989; 42: 1137-1148. Fratiglioni L, Viitanen M, Backman L et al. Occurrence of dementia in advanced age: The study design of the Kungsholmen Project. Neuroepidemiology-1992; l(Suppl.-1): 29-36. Folstein MF. Folstein SE. McHuzh PR. Mini-Mental State: a practical method for grading the cognitive state of patients for the clinician. J Psychiat Res 1975; 12: 189-198. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders, 3rd edn, revised (DSM III-R). Washington, DC: American Psychiatric Association; 1987. Fratiglioni L, Grut M, Forsell Y et al. Prevalence of Alzheimer’s disease and other dementias in an elderly urban population: Relationship with age, sex and education. Neurology 1991; 41: 1886-1892. Thompson EH, JR, Doll W. The burden of families coping with the mentally ill: An invisible crisis. Family Relations 1982; 31: 379-388. Rothman KJ. Modern Epidemiology. Boston: Little, Brown and Company; 1986. Pearlin LI, Mullan JT, Semple SJ et al. Caregiving and the stress process: An overview of concepts and their measures. -Gerontologist 1990; 30: 583-594. Halev WE. Levine EG. Brown SL et al. Psvcholozical. social, and health consequences of caring for a rektive with senile dementia. J Am Geriatr Sot 1987; 35: 405-411. Eagles JM, Craig A, Rawlinson F et al. The psychological well-being of supporters of the demented elderly. Br J Psychiat 1987; 150: 293-298. George L, Gwyther LP. Caregiver well-being: A multidimensional examination of family caregivers of demented adults. Gerontologist 1986; 26: 253-259. Clipp EC, George LK. Psychotropic drug use among caregivers of patients with dementia. J Am Gerlatr !%e 1990; 38: 227-235, Eagles JM, Beattie JAG, Blackwood GW et al. The mental health of elderly couples. I. The effects of a cognitively impaired spouse. Br J Psychlat 1987; 150: 299-303. Wilder DE, Teresi JA, Bennett RG. Family burden and dementia. In: Mayeux R, Rosen WG, Eds. The Dementias. New York: Raven Press; 1983. I
,
.
J CUo Epidemiol Vol. 45, No. 8, pp. 861-870, 1992 Printed in Great Britain. All rights reserved
HEALTH AND SOCIAL CONSEQUENCES FOR RELATIVES OF DEMENTED AND NON-DEMENTED ELDERLY. A POPULATION-BASED STUDY MARGARETA GRAFSTR~M,‘*
LAURA FRATIGLIONI,’ P-O.
SANDMAN*
and
BENGT WINBLAD’ ‘Stockholm Gerontology Research Center and Department of Geriatric Medicine, Karolinska Institute, Stockholm and ‘Department of Advanced Nursing, University of Umel, Umel, Sweden (Received II February 1992)
Abstract-A population-based study was performed to investigate the subjective and objective burden due to caring for a demented relative. All the relatives of the subjects with cognitive impairment, detected in a district of Stockholm, living at home, were included in the study. When compared with relatives of elderly, mentally healthy persons
living at home in the same district, they had high ORs for subjective burden and for use of psychotropic drugs. Spouses were the most stressed. However, the ORs for use of medical facilities and somatic drugs were close to unity, showing that caring for a demented person did not affect the physical health of the relative. A second comparison between relatives of demented persons living at home and in institutions, showed that the relatives of institutionalized subjects were less frequently spouses and had more
problems with their physical health, but both groups had similar subjective feeling of stress. Family burden based study
Relatives
Dementia
INTRODUCTION
As in many other western countries, in Sweden there is an increasing number of elderly persons in the population, many of whom will reach a very advanced age [l]. As a consequence, the absolute number of age-related diseases, like dementia, will increase [2]. Dementia is a problematic disease, not only within the scientific field, but also for the organization of health care. Among the problems caused by this disease, one of the foremost is the burden borne by the relatives of the demented persons [3]. Changing personality as the disease
*All correspondence should he addressed to: Margareta Grafstriim, Stockholm Gerontology Research Center, Dalagatan 9-11, S-l 1382 Stockholm, Sweden. [Tel: +46 8 349500 ext. 2028; Fax: +46 8 3352751
Elderly care
Caregiver
Population-
progresses, changing behaviour, deterioration of memory, concentration and other cognitive functions make the daily life of the relatives of the elderly person very strained. Previous studies have shown the magnitude of this problem [4-71. In particular, it has been reported that caregivers experience high levels of depression, anxiety, social isolation and stress related physical symptoms [8,9]. On the other hand, other studies have failed to show any increased medical problems among those who take care of demented persons. These controversial data were discussed in a review by Baumgarten, 1989 [lo], who emphasized that some of the results from previous studies were hampered by methodological problems: lack of a control group, selection of the subjects from hospitals or geriatric centres, and presence of confounders. 861
862
MARGARETA GRAFSTR~Met al.
In order to investigate the consequences due to the presence of a demented person in the family, and to individuate the needs of medical and social assistance, we carried out a population-based study on the psychosocial situation of the relatives of demented persons. The first aim of this paper was to verify whether the presence of a demented person living at home affects the psychological and physical health of relatives, when their health is compared with the status of relatives of non-demented elderly people. The second aim was to study the difference in the psychological and physical stress between relatives of demented persons living at home and those of demented persons living in Specifically, we analysed the institutions. relative risks of psychological and physical strain in the relatives for both comparisons
(relatives of demented subjects living at home compared with relatives of non-demented subjects; relatives of demented subjects living at home compared with relatives of demented subjects living in institutions). METHODS
Subjects This study is a part of the Kungsholmen Project which is a longitudinal study on aging and dementia, being carried out in Stockholm. The study population of the Project [l l] consists of all the inhabitants of a central area of Stockholm in October 1987, born in 1912 and earlier: 2368 subjects, 76% female (Table 1). First, the whole population was assessed with a short cognitive test, called Mini Mental State
Table 1. Relatives of demented and non-demented subjects included in the study recruited from the Kungsholmen Project, and drop-outs by causes
I
I
2366 inhabitants of Kungsholmen
52
lived alone
Study sample
I
relatives of non-
Drop-outs The demented refused The demented moved The relatives refused
Drop-outs 60 9 2
t
The non-dement.refused The non-dement.moved The relatives refused
59 6 4
Health and Social Consequences for Relatives of Demented Elderly
Examination (MMSE) [12]. MMSE was used as a screening test in order to discriminate between subjects with (score ~23) and those without cognitive impairments (score 224). All the subjects with MMSE ~23 and a sample of subjects with MMSE 2 24 were then extensively evaluated to reach a clinical diagnosis of Alzheimer’s disease (AD) or other dementias, according to DSM III-R diagnostic criteria, with some modifications [13, 141. The sample was selected from all the subjects who had MMSE score ~24, matched by gender and age with the subjects who had MMSE score ~23. The relatives of the subjects of these two groups were included in the present study (Table 1). The cognitively impaired subjects (here named “demented subjects”) were considered as a possible cause of psychological and physical strain on their relatives. A demented person was defined as a subject with MMSE 24 were really demented [14]. In this study, the functional aspect is preferred to the exact clinical diagnosis of dementia. The outcomes of the study are the consequences for the health and social life of the relatives who take care of demented subjects. We used subjective and objective measures to define the outcomes. No standardized scales were used in order to check the psychological stress and the social limitation, as the subjective feelings were the endpoint. The use of drugs and medical facilities were considered as an objective measure of psychological and physical health status. All the variables examined in our study are included in the conceptual model of caregivers’ stress, suggested by Pearlin et al., 1990 [17]. This model describes the caregiver’s stress as the final endpoint of a process which comprises many interrelated conditions such as socioeconomic characteristics, resources of caregivers, primary and secondary stressors. Among the variables suggested by the model as background and context, we took into account in our study the socioeconomical situation (education and profession of the relatives) and caregiver history (type of kinship and cohabitation). Cognitive status measured with the MMSE was the only primary stressor that we studied and no secondary role strains or mediators were examined. Among the outcomes suggested by that model, subjective feeling of stress and physical health were investigated. In conclusion, our data investigate the basic part of the complex chain of events that determines the caregiver’s burden, as described in that model. The main results of our study can be summarized in the following points:
(1) Demented persons are more frequently institutionalized than non-demented subjects of the same age. Demented persons living in institutions, less frequently have living spouses than demented persons living at home. The lack of a spouse seems a possible cause of institutionalization. (2) Relatives of demended persons living at home feel psychologically stressed and limited in their affective and social life more frequently than relatives of non-demented elderly. Other controlled studies reported similar results. Haley et al., 1987 [18] reported lower overall life satisfaction, a higher level of depression and impaired social and affective life. Eagles et al., 1987 [19] found higher scores on the Relative’s Stress and Relative’s Mood Scale, and George and Gwyther, 1986 [20], reported symptoms of stress nearly three times more frequently. (3) Relatives of demented subjects living at home use psychotropic drugs more frequently than relatives of non-demented elderly. These data are in agreement with a recent study of Clipp et al., 1990 [21], who found the use of psychotropic drugs among the caregivers of demented subjects substantially higher than previously reported prevalence rates in the general population, and among the elderly living in the community. (4) Relatives of demented persons judge their own health to be worse than do the relatives of the elderly non-demented subjects, but they do not use drugs for somatic disorders or medical facilities more frequently than does the reference group. Adult children of demented subjects are the only exception (see point 5). Data from other controlled studies are controversial. George and Gwyther, 1986 [20], in a survey found that caregivers appeared similar to other populations in physical health and they did not use more medical services (in agreement with our results), but they did not rate their health worse than random community samples (contrary to our data). In disagreement with our results, Haley et al., 1987 [18], found a higher number of medical visits and more use of medical prescriptions among relatives of demented people. However, the two groups of relatives compared were not balanced for social level which could have biased the results.
Health and Social Consequences for Relatives of Demented Elderly
(5) Taking into account the different types of kinship, spouses show the highest ORs for subjective burden, especially for limitation of social life. These results disagree with those reported by Eagles, 1987 [22], who did not find any difference between spouses of demented and non-demented subjects with regard to psychological health, but only mild cases were included in their study. In contrast, our data agree with George and Gwyther, 1986 [20], who found a higher stress situation for the spouses, after adjustment for age of the relatives. The children are the only group of relatives who show a clearly increased use of and somatic drugs. As psychotropic expected, the distant relatives less frequently reported stressful burden or limitations in their affective life. (6) In the second comparison, we found that the relatives of demented subjects living at home use more psychotropic drugs than the relatives of demented persons living in institutions. However, they have similar feelings of stressful situation and lower use of somatic drugs and medical facilities. These data suggest that the poor physical status of the caregiver could have been the cause of the institutionalization of the demented person. However, a causal relation between the presence of the demented person in the family, and the poor physical status of the relative cannot be detected with our crosssectional data. When different types of kinship were analysed, the group of more distant relatives has a high OR for feeling psychologically stressed, while all the other relatives show ORs close to unity. It seems that this is the only group which can benefit from the institutionalization of demented subjects, at least from a subjective point of view. In our opinion, it is unlikely that confounders could have heavily affected our results. First, the demented and non-demented groups were matched by age and gender. Second, variables such as age, sex, education and profession of the relatives as well as cohabitation with the elderly subjects were controlled both by checking their balance between the index and reference groups and by performing a multiple logistic regression analysis. Our study is limited by the fact that it is based on cross-sectional data. In a cross-sectional
869
survey, it is not possible to detect a correct temporal sequence between a possible cause and its effect, but this point applies only to some study outcomes. Secondly, selection biases due to “survivors” may be present. That is to say, relatives detected in a cross-sectional study can represent only the most resistant or particularly healthy relatives, while the others have been lost as caregivers, before the onset of research. One possibility of controlling for the effects of this potential bias is given by the second comparison between relatives of demented persons living at home and relatives of demented persons living in institutions. Finally, in a cross-sectional study it is not possible to study modification of the strain during the development of dementia. If we consider institutionalization as the last step in a process [23], the second comparison can give us some information about the process itself. We cannot rule out the possibility that our results have been affected by the drop-outs (24% in the demented group and 22% in the non-demented group). The drop-outs were due to refusal by, or moving of, the demented or non-demented persons. Only two relatives in the index group and four relatives in the first reference group actually refused to participate. It is understandable and likely that people with initial symptoms of dementia are aware of some stressful situation at home. Therefore, they are more prone to refuse the interviewing of a relative, even if this person is chosen by themselves. As the drop-outs were less severely demented than the subjects included and most of them lived at home, they have probably affected our results towards an underestimation of the ORs. In conclusion, caregivers of demented persons living at home show that they experience a very stressful burden, and the spouses are those who are most affected. Correspondence in the objective burden of these stressful feelings is the increased use of psychotropic drugs. However, relatives are not physically affected by caring for demented persons as shown by the fact that they use somatic drugs and medical facilities as much as the reference group does. The lack of a spouse and the bad health status of the caregiver seem important determinants of the institutionalization of a demented person. However, the institutionalization itself does not take away from the closest relatives any subjective feeling of a stressful situation, although the use of psychotropic drugs seems to decrease.
870
MARGARETA GRAFSTR~Met al.
Although results derive from a controlled to what extent our study, we wonder conclusions could be generalized for societies with different lifestyles and socio-medical organization. The presence of a reference group is not sufficient to eliminate the influence of different social networks on the health and social consequences of a relative of a demented person. Finally, the complex situation of caregiving, especially in its psychological aspects, can be fully explained only by further, longitudinal data. Acknowledgements-This study was supported by the Swedish Council for Social Research, Swedish Medical Research Council, Karolinska Institute Foundation, Ake W&erg’s Foundation and grants from private persons.
9. Given CW, Collins CE, Given BA. Sources of stress 10. 11 ’
12 ’
13.
14.
15. REFERENCES 16. 1. SCB. Statistical Abstract of Sweden 1990. Stockholm: Statistics Sweden; 1991. 2. Jorm AF, Korten AE, Jacomb PA. Projected increases in the number of dementia cases for 29 developed countries: application of a new method for making projections. Acta Psychiat Stand 1988; 78: 493-500. 3. Zarit SH. Do we need another “stress and caregiving” study? Gerontologist 1989; 29: 147-148. 4. Nygaard HA. Strain on caregivers of demented elderly people living at home. Scand J Rim Health Care 1988; 6: 33-37. 5. Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: Correlates of feelings of burden. Gerontologist 1980; 20: 649-655. 6. Pruchno RA, Resch NL. Husbands and wives as caregivers: Antecedents of depression and burden. Gerontologist 1989; 29: 159-165. 7. Dillehay RC, Sandys MR. Caregivers for Alzheimer’s patients: What we are learning from research. Int J Aging and Human Development 1990; 30: 263-285. 8. Becker J, Morrissey E. Difficulties in assessing depressive-like reactions to chronic severe external stress as exemplified by spouse caregivers of Alzheimer patients. Psycho1 Aging 1988; 3: 300-306.
17.
18.
19.
20.
21.
22.
23.
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