FAMILY CAREGIVERS: EXPERIENCES AND CONSEQUENCES ASSOCIATED WITH CARING FOR FAMILY MEMBERS WITH DEMENTIA
P.J. Brown, A.B. Holmes, R.A. Mitchell
Abstract The aim of this research was to study family cnregiv-
ers experiences and consequences associated with car- ing for a family member with dementia with the purpose of identifying major difficulties, service needs and appropriate interventions. A further aim was to assess carers support group experiences. Caregivers were identified as those attending 16 Sydney metropolitan A.D.A.R.D.S. groups. Fifty-three carers returned the self-report quesionnaire.
Sufferers were both males and females who were cared for, in the main, by their spouses. A small group of carers had little or no personal physical and emo- tional support from others. Almost half of the carers are providing care 21 to 24 hours a day. Eighty-three per cent of carers reported changes in health status related to this role.
Clearly, there is a need to provide physical and emo- tional support for carers generally, and for those with little or no support (for example, those who do not attend a support group) in particular.
Introduction Dementia refers to a variety of conditions or dis-
orders which result in intellectual or cognitive decline.1 Estimates indicate that dementia affects 5% of the Aus- tralian population at age 65 and up to 20%of those over 802. The most common type of dementia is Alzheimers disease which currently affects 110,000 people in Aus- tralia. In the year 2001, it is estimated that this figure will reach 2 iO.OOO4. Alzheimers disease is particularly devastating because there is no clearly identificable cause or cures and the progressive course of the disease renders its victims totally incapable of caring for them- selves. With the rapid growth in the Australian popula- tion of people 65 and 80 years of age,6.7 there is an increase in the likelihood of dementia. In this context, there is a growing recognition by many that families are the primary sources of care for such persons.8.9 Conse- quently, health workers must be prepared to assist fam- ily caregivers with the enormous responsibilities and strains that they will experience.
Care of even mildly impaired demented patients can be significantly time consuming10 and dependence on families resources for care increases over time.11 Increasingly, this burden is focussed on a single care- giver, who is often a victims spouse.12
Those spouses who are very old and who have fixed, marginal incomes are at particular risk. Clearly, they must receive appropriate community support to main- tain their caregiving role and compliment that care.
In the US., several studies,l4.1s have found commun- ity services to be underutilised. Moreover, many care- givers have difficulty identifying what their specific needs are.lh Such information deficits make it difficult
for health workers to provide the support that is needed for carers in their caregiving role.
In Australia, approximately 80 per cent of long-term health and social services are provided for the elderly and the chronically ill by family members. Clearly, families are not socialised to assume this role and are, therefore, ill-equipped to manage the physical and psy- chosocial demands of such a role. The role is made even more difficult because many chronic diseases, such as dementia, are irreversible and current medical treat- ments have been ineffective.
The burden of watching a family member with dementia decline, can be physically, emotionally and psychologically overwhelming.I* Moreover, chronic illness disrupts the usual ways in which family members behave toward one another and then hampers their ability to overcome the effects of this.19 Changes in attitudes occur and responsibilities must often be reas- signed.20 The consequent state of disequilibrium is potentially detrimental to the family systemzl.
This situation is likely to affect all family members and increase the social and economic costs to the com- munity. Arguably, services which have been developed to assist the family and the demented person, have provided some relief. These have included home care, day care services and holiday (respite) care.22 Adult day care programs, in some instances, have reduced the stress of continuous caregiving and helped families maintain the Alzheimers sufferer a t home thus delaying institutionalisation.23 Various management strategies which enhance caregivers coping abilities have been identified by Zarit.24
Support for carers must be practical and realistic and needs to include advice about a range of issues. Wiili- am11825 has suggested that domiciliary care benefits, financial and legal advice, sitting services, nursing home accommodation, architectural and security advice and teaching the carer how to cope with the dementing person, require attention.
Introduction t o the Present Study Although research, which has focussed on the expe-
rience of caring for someone with dementia, has increased recently, there is still limited information which is based on large numbers of carers and caregiv- ing experiences over time.26 An exception is the longi- tudinal study of family caregiver experiences and con- sequences associated with caring for family members with dementia27 begun in 1985 at the Centre for Geron- tology, University of Utah. As part of this study, ques- tionnaires were mailed to members of 50 local support groups in 16 States in the US.
The aim of this present study was to begin toexamine family caregivers experiences and consequences asso- ciated with caring for family members with dementia in
Australian Journal on Ageing, Vol. 9, No. 2, May 1990
the Australian context with the objectives of identifying major difficulties, service needs and appropriate inter- ventions. Family caregivers were identified as those persons caring for demented relatives and who attended Alzheimers Disease and Related Disorders Society (A.D.A.R.D.S.) support groups in the metopolitan area of Sydney. Research questions included: What is the burden or strain on carers and what factors is this related to? To what extent, if a t all, are community services utilised by carers? What is the projected likeli- hood of having the sufferer institutionalised within say 6 months, or 12 months, or. . .? What are the implica- tions of f indings for both caregivers and health workers? The University of Utah Questionnaire (A Longitudinal Study of Caregivers of Demented Family Members) was adapted by the authors after discussion with Dr. Brodaty, Dementia Clinic, Prince Henry Hos- pital and the A.D.A.R.D.S. Management Committee, N.S.W.
Subjects were carers currently caring for a family member with dementia at home who attended Sydney A.D.A.R.D.S. groups. The authors visited 16 metro- pol i tan g r o u p s a n d quest ionnaires (along with a stamped addressed envelope in which to return the completed questionnaire) were given to volunteers who met the criteria.
Permission to undertake the study was sought from the A.D.A. R.D.S. Management Committee, local A.D.A.R.D.S. groups and carers.
Sixty-four questionnaires were distributed to volun- teer carers at 16 A.D.A.R.D.S.s groups. Each group was visited at least once over a 6 month period in 1987/88. The questionnaires requested information about carers demographic characteristics, percentage of health costs paid in the caring role, percentage of caregiving responsibilities provided directly, hours per day involved in providingcare, length of time providing care, employment status, religious affiliation, number of household residents, changes in feelings towards the sufferer, most important needs and problems, physical a n d e m o t i o n a l h e a l t h s t a t u s , h e l p f u l n e s s of A.D.A.R.D.S. group, burden of care and coping mechanisms.
Information about sufferersdemographic character- istics, length of illness, first signs of change in behav- iour, course of illness, diagnosis, length of illness, phys- ical and emotional health status, ability to relate socially, and severity of illness, was also sought.
Results Demographic Characteristics of Carers and Sufferers
provided in Table I . A description of carer and sufferer characteristics is
From theTable it can beseen that carers tended to be
Australian fournai an Ageing, Vol. 9. No. 2. May 1990
Table 1 CARER AND SUFFERER DEMOGRAPHIC
DemoEraphics Carers Sufferers Age x = 64.9 Sex Female (74.4%) Country of Birth Australian Born
Marital Status Married (90.3%) Ed. at School Inter. Cert. (52%)
No ICjSC (30%)
Ed. after School None (24.3%) TAFE (21.6%) College/Uni (2.7%) Other (51.3%)
Main Source of Old Age Pension Income (30.2%)
Other (20.7%) Combination
(26.4%) Religion Protestant (67.3%)
X = 14.43 Male (64%) Australian Born
(61.5%) Overseas Born
128.8%) Married (79.2%) None IC/Sc (45.09%) lC/SC (29.4%) LC/ HSC (17.6%) None (38.3%) TAFE (12.9%) College/ Uni (29.03%) Other (19.3%) Old Age Pension
(49.05%) Combination (35.8%)
Protestant (63.8%) Roman Catholic
(3 I .9%)
younger than sufferers. From additional analysis, there were more female than male carers (41 to 12); 40 ( 7 5 . 5 % ) were spouses. Of these, 31 ( 7 7 . 5 % ) were females. From crosstabulation analysis, equal numbers of carers and sufferers did not complete secondary schooling. More sufferers had received a College or University education and these tended to be males. Of significance, is the percentage of both carers and suffer- ers who reportedly received the Old Age Pension as their sole source of income. From further analysis, I 1 of