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 Alzheimer’s 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. Alzheimer’s disease is particularly devastating because there is no clearly identificable cause or cures and the progressive course of the disease renders it’s 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 victim’s 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

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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 Alzheimer’s 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 Alzheimer’s 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.

Methodology

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 sufferers’demographic 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

CHARACTERISTICS

DemoEraphics Carers Sufferers Age x = 64.9 Sex Female (74.4%) Country of Birth Australian Born

(76.9%)

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 these were female carers and 16 were male sufferers.

Forty-three (81.1%) sufferers were known by the carer to have been diagnosed as having dementia. Twenty-six (60.46%) were males with an average age of 73.96 years, and a range of 64 to 86 years. Sixteen (39 .53%) were females with an average age of 7 3 . 7 years and an age range of 59 to 9 I years.

According to the caregivers’ responses, the dementia sufferers had shown signs of impairment for an average of 10 years. Interestingly, forty-two (79.2%) sufferers had been diagnosed by a doctor as having dementia for an average of only 4 years. For one carer, the first signs of change were:

“Loss of memory, lack of understanding either spoken or written things, even papers and television, retired into himself, erratic behaviour.”

Another carer, described the first changes in this way: “Loss of memory which the patient complained of and irrationality (not normal). Shunned mixing with people. Very depressed.”

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Carers’ Needs and Problems Associated with the Caring Role

Carers identified needs are presented in Table 2.

Table 2 CARERS’ IDENTIFIED NEEDS

I . Time out/ Respite & Day Care 34.9% 2. Companionship/ Social

n = I 2

Contact/ Being able to Communicate with others 7.6% n = 4

information, understanding of others, extended care 5.7% n = 3

3. Other, e.g., advice/

Other carers (57%) identified multiple needs. Of sig- nificance is the fact that eleven carers (33%) mentioned the present need for respite care.

Carers identified that problems were created by: suf- ferer’s behaviour, own physical condition (for example, illness), and constant supervision. One male carer pro- vides the following insights into problems experienced:

“My biggest problem is taking over my wife’s role. I now have to look after the housework, the shopping, the cooking, seeing she is dressed properly, etc., as well as my own jobs, doing the gardening, washing and looking after the car etc.”

Carers’feelings in relation to the caring role were also examined in this study. Specifically, carers were asked if their feelings towards the sufferer had changed in rela- tion to this role. Findings have been presented in Table 3.

Table 3 CHANGES IN CARERS’ FEELINGS RELATED

TO THE CARING ROLE

I . Closer/ More Caring/ More Maternal 32.1% n = 17

2. Anger/ Resentment/ Irritable/ Frustration 28.3% n = I 5

3. Depressed/ Sad/ Upset 5.7% n = 3 4. Other, e.g., distances

self, love and anger, helpless, unspecified 9.5% n = 5

To quote one carer: “At first I became irritable by A’s apparent careless- ness. Now 1 understand he isn’t responsible for his ‘different’ behaviour. Our relationship is gradually changing from a husband/ wife to a childlparent.”

Twelve (22.6%) carers stated that n o changes had occurred. Clearly, there were both ‘positive’ (32.1%) and ‘negative’ (43.5%) outcomes related to the caring role. Of interest, is the fact that crosstabulation analysis indicated that 75% of carers who responded in this way fell below the burden score mean of 62.5. This would suggest that the burden they experienced, associated with the caring role, was not as great as for others.

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Almost half of the carers are providing care for 21-24 hours daily and an additional 33.8% for 1 1-20 hours per day. Changes in health status were attributed by carers to the caring role (see Figures I , 2 and 3).

Figure 1 PHYSICAL HEALTH BEFORE PROVIDING CARE

Good .............................................. 48.07% Fair ................................................ 11.53% Poor ............................................... 1.92%

..........................................

Figure 2 EMOTIONAL HEALTH BEFORE

PROVIDING CARE

Good .............................................. 52.83% Fair ................................................ 5.66% Poor ...............................................

..........................................

Figure 3 CHANGES IN HEALTH STATUS RELATED

TO THE CARING ROLE

No Change A Little Totally 0 I 2 3 4 5 6

(17.0%) ( I 1.53%) (17.3%) (9.6%) ( 1 1.53%) (23.07%) (1.92%)

Prospect of Sufferer’s being lnstitutionalised All caregivers reported a probability of having the

sufferer institutionalised within the next 12 months. On the seven point probability scale of definitely not (0) to definitely yes (6), their mean score was 3.8 ( S D = 2.5) which was above the midpoint of 3. This was a some- what different finding to Lund et al. (1986) whose sub- jects did not report a probability of having the sufferer institutionalised within a year of the study. This finding is most probably related to the carers‘ burden scores in this study (mean = 62.5, S D = 16) which was higher than those reported in other studies (for example, Prattet al., 1985; Zarit et al., 1985: Lund et al., 1986).

One carer described her need in this way: “many crises arise, also needs for ordinary activities to be undertaken - visits t o dentist, attention to business matters, payment of bills, contact with fam- ily and grandchildren. If no relief from care on a part-time basis is available, institutional care may have to be considered.”

Support for the Carer and Community Service Utilisation

Nearly 14% of all carers had no friends or relatives to support them in the caregiviong role, One carer stated:

“I feel 1 couldn’t ask friends as my sister can be very difficult.”

One-third had either only one or two friends or rela- tives. Difficulty in contacting friends or relatives were

Australian Journal on Ageing, Voi. 9, No. 2, May 1990

experienced by 10 per cent of carers. A small group of carers (14.5%) did not have one specific person to share feelings and thoughts with arising out of the caring role. Of those who said that there was a person to share these with, 7.5% reported that the person was not, however, readily available for this purpose. Four carers reported that there were no community services available for them to utilise. Another group (13.46%) had no knowl- edge of what support services were available to them. Even where services were identified and were available 32.65% of carers did not make use of them. Of these, 53.33% believed that there was no need to use them at present, others (6.6%) did not want to add to thesuffer- er’s confusion, and 20% of sufferers refused to use them or denied that there was anything wrong. Current servi- ces being used by carers included home nursing services 924.2%), day care (21.2%), meals-on-wheels (6.0%), and a combination of services (36.3%). When carers were asked to identify a single service that they would like available for use they nominated day care, long day care, help at night, trained help. To quote one carer:

“help in the home between 7 and 9 a.m. and 4 and 6 p.m. Day care may be able to help me with morn- ings. 1 employ a school girl from 5 to 6 p.m. each night, if 1 could affort more I would d o so.”

Over half the carers indicated that they needed more than one service, for example, time out and sitter servi- ces, home help and maintenance; day care and trans- port. Only 2.3% of carersstated that they had sufficient community supports.

Lack of Understanding of Dementia by Some Carers From attendance at A.D.A.R.D.S.’ groups over the

six month period of the study, it became evident that there was a small group of carers who lacked an under- standing of the disease of dementia. Specifically, these carers lacked a clear understanding of it’s camels, treatment and prognosis. I t is difficult a t this stage to know whether this apparent lack of understanding was related to: (i) inadequate provision of information in the first

place by doctors, nurses and others; (ii) misleading or inaccurate information by health

workers or others; (iii) denial on the part of the carer; or (iv) newness to the roleofcarer and/or A.D.A.R.D.S.’

group membership.

Discussion Many carers will need additional help from the social

welfare system as their main source of income is the Old Age Pension. Moreover, there are carers who have no friends or relatives to support them physically in the caregiving role or with whom to share feelings or thoughts.

Presumably, A. D. A. R. D.S.’support groups can continue to help meet this need, but for those who d o not attend these groups this need will remain unmet. One of the m ore significant findings of this study SO far

Australian Journal on Ageing, Vol. 9. No. 2, May 1990

is the fact that so many of the carers identified their need for several services to meet existing needs and prob- lems. These findings underscore the importance of further development of informal and more formal sup- port networks for carers. Additionally, not all caregiv- ers will share the same circumstances and health service provided will have to be innovative to match services to carer needs and situations.

Changes in health status related to the caring role have implications for the identification of developing health problems and carers at ‘risk’. Relief from con- stant supervision and assistance at night will provide some reduction of the burden of care.

There are clear implications for health professionals that arise from the data presented. These include: (i) physical and psychological support for carers

generally, and, in particular, for those without friends or relatives to whom they can turn for support;

(ii) support for, and involvement in, support groups such as A.D.A.R.D.S.;

(iii) development of new support groups where they are needed by present carers;

(iv) identification of carers who d o not attend support groups and encouraging them to join same;

(v) identification of carers’ needs and problems and matching these with available services;

(vi) disseminat ion of information a b o u t existing services;

(vii) provision and reinforcement of information about dementia for carers, health workers, government and the public generally;

(viii)identification of carers ‘at risk’ and early interven- tion; and

(ix) further research efforts which focus on carers’ needs and problems, appropriate supports, servi- ces and interventions, including their evaluation.

From speaking to individual carers and health pro- fessionals attending or leading support groups, it became quite obvious that there were also many carers: (i) who d o not attend support groups and little, there-

fore, is known of their needs and problems; (ii) from other countries who presently care for family

members with dementia and who d o not attend support groups.

Clearly, the second group of carers, will face addi- tional needs and problems associated with language, assimilation of knowledge of available services and abil- ity to communicate with service providers. A challenge for research activities is to identify and study each of these groups.

Such is the challenge facing the health care system in New South Wales. PeterJ. Brown. R.N.. D.N.E. (Cumb.). B.A. Hons. (Macy.). M.A. (Macy.). F.C.A. (N.S. W.) Annette B. Holmes. R . N . . A.D.C.N.S. (Geronr. Nurs.)(Cumb.). B.A. (N.S. W.) Reginald A. Mitchell. BSc. (Syd.) . M.Sc. (Macy.) . M. Ed. (Svd.). Dip. App. Sc. (Cumb) School of Nursing. Cumberland College of Hralth Scirnces. Lidcornbe. N . S. W.

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Authors * Note: This research was supported by a grant from Cumblerland College of Health Sciences.

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48 Australian Journal on Ageing, Vol. 9, No. 2, May 1990