Dementia refers to a variety of conditions or disorders that result in intellectual or cognitive decline.1 Estimates indicate that dementia affects 5% of the Australian population at age 75 to 79 and up to 23.6% of those over 85. 2 The most common type of dementia is Alzheimer's disease, which currently affects 110,000 people in Australia.3 In the year 2001, it is estimated that this figure will reach 210,000.4 Alzheimer's disease is particularly devastating because there is no clearly identifiable cause or cure,5 and the progressive course of the disease renders its victims totally incapable of caring for themselves. With the rapid growth in the Australian population of people over 65 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 Consequently, health-care workers must be prepared to assist family caregivers with the enormous responsibilities and strains that they will experience.
Care of even mildly impaired patients with dementia can be significantly time-consuming10 and dependence on families' resources for care increases over time.11 Increasingly, this burden is focused on a single caregiver, who is often a victim's spouse.12
Those spouses who are very old and who have fixed, marginal incomes are at particular risk.13 Clearly, they must receive appropriate community supports to maintain their caregiving role and complement that care. In the OS, several studies have found community services to be under used.14,15 Moreover, many caregivers have difficulty identifying what their specific needs are.16 Such information deficits make it difficult for health-care workers to provide the support that is needed for carers in their caregiving role. In Australia, approximately 80% of longterm health and social services are provided for the elderly and the chronically ill by family members.17 Clearly, families are not socialized to assume this role and are, therefore, illequipped to manage the physical and psychosocial demands of such a role. The role is made even more difficult because many chronic diseases, such as dementia, are irreversible and current medical treatments have been ineffective.
The burden of watching a family member with dementia decline can be physically, emotionally, and psychologically overwhelming (Williams, unpublished data, 1985). 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.18 Changes in attitudes occur and responsibilities must often be reassigned. 19 The consequent state of disequilibrium is potentially detrimental to the family system.20
This situation is likely to affect all family members and increase the social and economic costs to the community. Arguably, services that have been developed to assist the family and the person with dementia have provided some relief. These have included home care, day care services, and holiday (respite) care.17 Adult day care programs, in some instances, have reduced the stress of continuous caregiving and helped families maintain the Alzheimer's sufferer at home, thus delaying institutionalization. I7 Various management strategies that enhance caregivers' coping abilities have been identified by Zarit.21
CAREGIVER AND SUFFERER DEMOGRAPHIC CHARACTERISTICS
Support for caregivers must be practical and realistic, and it needs to include advice about a range of issues. Williams has suggested that domiciliary care benefits, financial and legal advice, sitting services, nursing home accommodation, architectural and security advice, and teaching the caregiver how to cope with the person who is dementing require attention (unpublished data, 1985).
THE PRESENT STUDY
Although research, which has focused on the experience of caring for someone with dementia, has recently increased, there is still limited information that is based on large numbers of caregivers and caregiving experiences over time. ,8 An exception is the longitudinal study of family caregiver experiences and consequences associated with caring for family members with dementia that began in 1985 at the Center for Gerontology, University of Utah.18 As part of this study, questionnaires were mailed to members of local support groups in 16 states in the US.
The aim of this present study was to begin to examine family caregivers' experiences associated with caring for family members with dementia in the Australian context with the objectives of identifying major difficulties, service needs, and appropriate interventions. Family caregivers were identified as those persons caring for demented relatives and who attended Alzheimer's Disease and Related Disorders Society (ADARDS) support groups in the metropolitan area of Sydney. Research questions included: What is the burden or strain on caregivers and what factors is this related to? To what extent, if at all, are community services used by caregivers? What is the projected likelihood of having the sufferer institutionalized within, say, 6 months, or 12 months, or. . . ? What are the implications of findings 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, Head, Memory Disorders Unit, Prince Henry Hospital and the ADARDS Management Committee, NSW. Such discussions resulted in changes being made to the questionnaire to make it more applicable and, in some instances, more understandable for Australian subjects.
Subjects were carers currently caring for a family member with dementia at home who attended Sydney ADARDS groups. The authors visited 16 metropolitan groups and questionnaires (along with a stamp addressed envelope in which to return the completed questionnaire) were given to volunteers who met the criteria on the day the researchers visited.
Permission to undertake the study was sought from the ADARDS Management Committee, local ADARDS groups, and caregivers.
Sixty-four questionnaires were distributed to volunteer caregivers at 16 ADARDS groups. Each group was visited once over a 6-month period in 1987 to 1988. The questionnaires requested information about caregivers' demographic characteristics, percentage of health costs paid in the caring role, percentage of caregiving responsibilities provided directly, hours per day involved in providing care, 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 and emotional health status, helpfulness of the ADARDS group, burden of care, and coping mechanisms.
Information about sufferers' demographic characteristics, length of illness, first signs of change in behavior, course of illness, diagnosis, length of illness, physical and emotional health status, ability to relate socially, and severity of illness, was also sought.
Demographic Characteristics of Caregivers and Sufferers
A description of caregiver and sufferer characteristics is provided in the Table. From the Table, it can be seen that caregivers tended to be younger than sufferers. From additional analysis, there were found to be more women than men caregivers (41 versus 12); 40 (75.5%) were spouses. Of these, 31 (77.5%) were women. Cross tabulation analysis indicated that equal numbers of caregivers and sufferers did not complete secondary schooling. More sufferers had received a college or university education, and these tended to be men. Of significance is the percentage of both caregivers and sufferers who reportedly receive Old Age Pension as their sole source of income. From further analysis, 11 of these were female caregivers and 16 were male sufferers. Forty-three (81.1%) sufferers were known by the caregiver to have been diagnosed as having dementia. Twenty-six (60.4%) were men with an average age of 73.9 years, and a range of 64 to 86 years. Sixteen (39.5%) were women, with an average age of 73.7 years and an age range of 59 to 91 years.
According to caregivers' responses, the sufferers with dementia had shown signs of impairment for an average of 10 years. Interestingly, 42 (79.2%) sufferers had been diagnosed by a doctor as having dementia for an average of only 4 years. For one caregiver, 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 behavior.
Another caregiver 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.
Caregivers identified the following needs; time out, respite, and day care, 34.9% (n= 12); companionship, social contact, ability to communicate with others, 7.6% (n = 4); and others, eg, advice, information, understanding of others, extended care, 5.7% (n - 3).
Other caregivers (57%) identified multiple needs. Of significance is the fact that 11 carers (33%) mentioned the present need for respite care. Caregivers identified that problems were created by sufferers' behavior, own physical condition (for example, illness), and constant supervision. One male caregiver provides the following insights into problems experienced:
My biggest problem is taking over my wife's role. 1 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.
Caregivers' feelings in relation to the caring role were also examined in this study. Specifically, caregivers were asked if their feelings towards the sufferer had changed in relation to this role. Feelings identified were closer, more caring, more maternal, 32.1% (n=17); anger, resentment, irritability, frustration, 28.3% (n=15); depressed, sad, upset, 5.7% (n = 3); others, eg, distances self, love and anger, helpless, unspecified, 9.5% (n = 5).
To quote one caregiver:
At first I became irritable by A' s apparent carelessness. Now I understand he isn't responsible for his "different" behavior. Our relationship is gradually changing from a husband/wife to a child/parent.
Twelve (22.6%) caregivers stated that no 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 cross tabulation analysis indicated that 75% of caregivers 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. Almost half of the caregivers are providing care for 21 to 24 hours daily and an additional 33.8% for 1 1 to 20 hours per day. Changes in health status were attributed by caregivers to the caring role.
Prospect of Sufferers' Being Institutionalized
All caregivers reported a probability of having the sufferer institutionalized 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 (SD = 2.5), which was above the midpoint of 3. This was a somewhat different finding than Lund et al whose subjects did not report a probability of having the sufferer institutionalized within a year of the study. This finding is most probably related to the caregivers' burden score in this study (mean = 62.5, SD= 16), which was higher than those reported in US studies.9,11,18 One caregiver described her need in this way:
Many crises arise, also needs for ordinary activities to be undertaken - visits to dentist, attention to business matters, payment of bills, contact with family and grandchildren. If no relief from care on a part-time basis is available, institutional care may have to be considered.
Support for the Caregiver and Community Service Use
Nearly 14% of all caregivers had no friends or relatives to support them in the caregiving role. One carer stated:
I feel I couldn't ask Mends as my sister can be very difficult.
One third had only one or two friends or relatives. Difficulty in contacting friends or relatives was experienced by 10% of caregivers. A small group of caregivers (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 with whom to share these, 7.5% reported that the person was not, however, readily available for this purpose. Four caregivers reported that there were no community services available for them to use. Another group (13.46%) had no knowledge of what support services were available to them. Even where services were identified and were available, 32.65% of caregivers 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 the sufferer's confusion, and 20% of sufferers refused to use them or denied that there was anything wrong. Current services being used by caregivers included home nursing services (24.2%), day care (21.2%), meals-onwheels (6.0%), and a combination of services (36.3%).
When caregivers were asked to identify a single service that they would like available for use, they nominated day care, long day care, help at night, and trained help. To quote one caregiver:
Help in the home between 7 and 9 AM and 6 PM. Day care may be able to help me with mornings. I employ a school girl from 5 to 6 PM each night, if I could afford more I would doso.
More than half of the caregivers indicated that they needed more than one service, for example, time out and sitter services, home help and maintenance, day care and transport. Only 2.3% of caregivers stated that they had sufficient community supports.
Lack of Understanding of Dementia by Some Caregivers
From attendance at ADARDS groups over the 6-month period of the study, it became evident that there was a small group of caregivers who lacked an understanding of the disease of dementia. Specifically, these caregivers lacked a clear understanding of its causes, treatment, and prognosis. It is difficult at this stage to know whether this apparent lack of understanding was related to inadequate provision of information in the first place by doctors, nurses and others; misleading or inaccurate information by health workers or others; denial on the part of the caregiver; or newness to the role of caregiver or ADARDS group membership.
Clearly, findings apply to volunteer caregivers who took part in the study. Findings, therefore, may not be able to be generalized to other caregivers in the 16 ADARDS support groups; other caregivers in other ADARDS support groups throughout Australia; and family caregivers who do not attend ADARDS groups.
One of the more significant findings of this study so far is the fact that so many of the caregivers identified their need for multiple services to meet existing needs and problems. Such a finding has implications for health services planning and provision. Many carers in the study could need additional help from the social welfare system as their main source of income is Old Age Pension.
Changes in caregivers' health status related to the caring role have implications for the identification of developing health problems and those at risk. Relief from constant supervision and assistance at night could provide some reduction in the burden of care. Many caregivers in the study require physical and psychological support and some carers without friends or relatives to whom they can turn for support will require additional support. Presumably, ADARDS support groups can continue to meet this need, but for those who do not attend, this need may be unmet. There is a need for further research to ascertain if, in fact, those who do not attend a support group have the same need for support as those in this study.
Nurses' support for and involvement in support groups such as ADARDS and the development of new support groups is to be encouraged. ADARDS support groups that participated in the study could be encouraged to assess the knowledge base of those who attend and, where information is found wanting, provide additional educational input.
For caregivers who generally do not attend a support group, the benefits to be derived could be substantial and should be communicated widely by nurses and other health professionals. From speaking to individual caregivers and health professionals attending or leading support groups, it became quite obvious that there were also many caregivers who do not attend support groups including those who have immigrated from other countries and therefore, little is known of their needs and problems.
Clearly, the second group of caregivers will face additional needs and problems associated with language, assimilation of knowledge of available services, and ability to communicate with service providers. A clear focus for nursing research activities is to identify and study each of these groups. Such is the challenge facing the health-care system in Australia.
- 1 . Pitt B. Psychogeriatrics. An introduction to the Psychiatry of Old Age. Edinburgh: Churchill Livingstone; 1982.
- 2. Prochazka Z, Henschke P, Skinner E. Last P. Memory loss and confusion. In: Dementia: A Guide for Caring People. South Australia: South Australian Health Commission; 1983.
- 3. Mace NL. Rabins PV. The 36-Hour Day. A Family Guide for Persons with Alzheimer's Disease, Relating Dementing Illnesses, and Memory Loss in Later Life. Baltimore: The John Hopkins University; 1981 .
- 4. Henderson AS. The Coming Epidemic of Dementia. Canberra: The Australian National University; 1982.
- 5. Butler RN, Lewis MI. Aging and Mental Health. Positive Psychosocial and Biomedical Approaches. Sl. Louis: CV Mosby Co; 1982.
- 6. Howe L. ed. Towards an Older Australia. Australia: University of Queensland: 1981.
- 7. Gilleard CJ. Living with Dementia. Community Care of the Elderly Mentally Infirm. London: Croom Helm: 1984.
- 8. Brody EM. Patient care on a normative family stress. Gerontologist. 1985; 25: 19-29.
- 9. Pratt C, Schmall V, Wright S, Cleland M. Burden and coping srategies of caregivers to Alzheimer's patients. Family Relations. 1985:34:27-33.
- 10. Barnes RF, Raskind MA, Murphy C. Problems of families caring for Alzheimer's patients. Use of support group. J Ant Geriatr Soc. 1981;29:80-85.
- 11. Zarit SH. Orr NK, Zarit JM. The Hidden Victims of Alzheimer' s Disease: Families Under Stress. New York: New York University Press; 1985.
- 12. Aronson MK. Senile dementia, Alzheimer's type. J Am Geriatr Soc. 198 1 ; 29:568-57 1 .
- 13. Bruhn JG. Effects of chronic illness on the family. J Fam Prac. 1977; 4: 1057-1060.
- 14. Brody EM, Lang A. Parent care as a normative family stresses. Gerontologist. 1985; 25:19-29.
- 15. Brown P, ed. Health Care and the Aged. A Nursing Perspective. Sydney. Australia: Williams & Wilkins; 1988.
- 16. Sands D, Suzuki T. Adult day care for Alzheimer's patients and their families. Gerontologist. 1983;23:21-23.
- 17. Caserta MS, Lund DA. Wright S, Redbum DE. Caregivers to dementia patients. The utilization of community services. Gerontologist. 1987;27:209-214.
- 18. Lund DA, Pett MA, Caserta MS. Institutionalizing dementia victims: Some caregiver considerations. Journal of Gerontological Social Work. 1987: 1 1(1/2): 1 19-135.
- 19. Wright SD, Lund DA. Pett MA, Caserta MA. The assessment of support group experiences by caregivers of dementia patients. Clin Gerontol. 1987;6(4):35-59.
- 20. Yalom, ID. The theory and practice of psychotherapy. In: Wright SD, Lund DA, Pett MA, Caserta MA. The assessment of support group experiences by caregivers of dementia patients. Clin Gerontol. 1987: 6(4):35-59.
- 21. Zarit SH. Orr NK, Zarit JM. The Hidden Victims of Alzheimer' s Disease. Families Under Stress. New York: New York University Press; 1985.
CAREGIVER AND SUFFERER DEMOGRAPHIC CHARACTERISTICS