Skip to main content

The Experiences and Quality of Life of Informal Caregivers

  • Conference paper
Quality of Life Assessment: International Perspectives

Summary

With increasing rates of disability and a major shift from custodial to community care, there is an increasing reliance on families and other supporters of people of all ages with severe and chronic mental or physical disabilities. At the same time there is growing evidence about the potentially negative impact of caregiving on the health and well-being of family caregivers. There is little systematic knowledge about the prevalence of caregiving and its impact on the caregiver. In past research on caregivers, study samples have been small, mostly recruited from service providers or support organizations, and hence unrepresentative. Research has tended to focus on a particular disability. The present study is population-based and cross-diagnostic, based on the assumption that other factors besides type of disability are influential in determining the impact of caregiving on the family caregiver.

As the first stage in an integrated research and health promotion programme for informal caregivers, a random survey of Victorian households is being conducted by telephone. The study aims to provide information on the prevalence of caregiving and to establish the broad spectrum of caregiving roles in the community without using predefined exclusion criteria, to assess the impact of the experience of caregiving on the quality of life of caregivers, and to identify services and strategies used by caregivers which help to minimise the negative impact of caregiving. Findings from the first wave of data collection in this survey are presented.

Use of self-identification as the method of recruiting participants resulted in the inclusion of a broad diversity of special needs caregivers. In spite of this diversity, covering a spectrum of caring roles, there are clear differences between this group and a comparison group of general caregivers in relation to health and well-being. The self-report measures employed in this work appear to be useful pointers to quality of life of the caregivers in our community.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 84.99
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 109.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

Preview

Unable to display preview. Download preview PDF.

Unable to display preview. Download preview PDF.

References

  • Barusch HS (1988) Problems and coping strategies of elderly spouse caregivers. Gerontologist 28: 677–685

    Article  PubMed  CAS  Google Scholar 

  • Baumgarten M (1989) The health of persons giving care to the demented elderly: a critical review of the literature. Clin Epidemiol 42(12): 1137–1148

    Article  CAS  Google Scholar 

  • Braithwaite V (1986) The burden of home care: how is it shared? Suppl Community Health Stud 10: 7–11

    Google Scholar 

  • Braithwaite V (1990) Bound to care. Sydney, Allen&Unwin

    Google Scholar 

  • Braithwaite V (1992) Caregiving burden: making the concept scientifically useful and policy relevant. Res Ageing 14(1): 3–27

    Article  Google Scholar 

  • Brodaty H, Gresham M (1989) Effect of a training programme to reduce stress in carers of patients with dementia. Brit Med J 299: 1375–1379

    Article  PubMed  CAS  Google Scholar 

  • Draper BM, Poulos CJ, Cole AMD, Poulos RG, Ehrlich F (1992) A comparison of caregivers for elderly stroke and dementia victims. J Am Geriat Soc 40: 896–901

    PubMed  CAS  Google Scholar 

  • Dupont A (1986) Socio-psychiatric aspects of the young severely mentally retarded and the family. Brit J Psychiat 148: 227–234

    Article  PubMed  CAS  Google Scholar 

  • Ellis BH, Miller KI, Given SW (1989) Caregivers in home health care situations: measurement and relations among critical concepts. Health Commun 1(4): 207–226

    Article  Google Scholar 

  • Fadden G, Bebbington P, Kuipers L (1987) The burden of care: the impact of functional psychiatric illness on the patient’s family. Brit J Psychiat 154: 768–775

    Google Scholar 

  • Fiore J, Becker J, Coppel DB (1983) Social Network Interactions: A buffer or a stress. Am J Community Psychol 11: 423–439

    Article  PubMed  CAS  Google Scholar 

  • Fitting M, Rabins P, Lucas MJ, Eastham J (1986) Caregivers for dementia patients: comparison of husbands and wives. Gerontologist 26: 248–252

    Article  PubMed  CAS  Google Scholar 

  • Folkman S, Lazarus R, Gruen R, DeLongis A (1986) Appraisal, coping, health status and psychological symptoms. J Personality Soc Psychol 50: 571–579

    Article  CAS  Google Scholar 

  • Gallagher D, Lovett S, Zeiss A (1989) Interventions with caregivers of frail elderly persons. In: Ory MG, Bond K (eds) Ageing and Health Care. London, Routledge, pp 167–190

    Google Scholar 

  • Gibson D (1984) Knowledge of community services amongst the aged. Australian J Society Issues 19: 3–13

    Google Scholar 

  • Green H (1985) Informal carers. General Household Survey, 15, Supplement A, HMSO, London

    Google Scholar 

  • Gwyther LP, George LK (1986) Caregivers for dementia patients: complex determinants of wellbeing and burden. Gerontologist 26: 245–247

    Article  PubMed  CAS  Google Scholar 

  • Haley WE (1983) A family-behavioural approach to the treatment of the cognitively impaired elderly. Gerontologist 23: 18–20

    Article  PubMed  CAS  Google Scholar 

  • Haley WE, Levine EG, Brown SL, Berry JW, Hughes GH (1987) Psychological, social and health consequences of caring for a relative with senile dementia. J Am Geriat Soc 35: 405–411

    PubMed  CAS  Google Scholar 

  • Harper S, Lund DA (1990) Wives, husbands and daughters caring for institutionalized and non-institutionalized dementia patients: towards a model of caregiver burden. Internat J Aging Human Devel 30(4): 241–262

    Article  CAS  Google Scholar 

  • Headey B, Wearing AJ (1981) Australians Priorities, Satisfactions and Wellbeing. University of Melbourne, Department of Community Welfare Service Monograph in Public Policy Studies No.4

    Google Scholar 

  • Herrman H, Singh B, Schofield H, Eastwood R, Burgess P, Lewis V, Scotton R (1993) The health and wellbeing of informal caregivers: a review and study programme. Australian J Public Health 17: 261–266

    Article  CAS  Google Scholar 

  • Hoenig J, Hamilton MW (1966) The schizophrenic patient in the community and his effect on the household. Internat J Soc Psychiat 165–176

    Google Scholar 

  • Hooyman NR, Kiyak HA (1991) Social Gerontology: a multidisciplinary perspective (2nd ed). Allyn and Bacon, Massachusetts

    Google Scholar 

  • Horowitz A (1985) Sons and daughters as caregivers to older patients: difference in role performance and consequences. Gerontologist 25: 612–617

    Article  PubMed  CAS  Google Scholar 

  • Jorm AF, Henderson S, Scott R, MacKinnon AJ, Korten AB, Christensen H (1993) The disabled elderly living in the community: care received from family and formal services. Med J Australia 158: 383–388

    PubMed  CAS  Google Scholar 

  • Jutras S, Veilleux F (1991) Informal caregiving: gender roles and care giving to the elderly: an empirical study. Sex Roles 25: 1–18

    Article  Google Scholar 

  • Kinnear D, Graycar A (1984) Ageing and family dependency. Australian J Society Issues 19: 13–26

    Google Scholar 

  • Kinney JM, Stephens MAP (1989) Hassles and uplifts of giving care to a family member with dementia. Psychol Ageing 26: 273–278

    Google Scholar 

  • Lawton MP, Kleban MH, Moss M, Rovine M, Glicksman A (1989) Measuring caregiving appraisal. J Gerontol 44: 61–67

    Google Scholar 

  • Lefley HP (1987) Aging parents as caregivers of mentally ill adult children: an emerging social problem. Hospital Community Psychiat 38: 1063–1070

    CAS  Google Scholar 

  • Levin E, Sinclair I, Gorbach P (1989) Families, services and confusion in old age. Avebury, Hants

    Google Scholar 

  • MacCarthy B, Lesage A, Brewin CR, Brugha TS, Mangen S, Wing JK (1989a) Needs for care among the relatives of long-term users of day care. Psychol Med 19: 725–736

    Article  PubMed  CAS  Google Scholar 

  • MacCarthy B, Kuipers L, Hurry J, Harper R, le Sage A (1989b) Counselling the relatives of the long-term adult mentally ill. I. Evaluation of the impact on relatives and patients. Brit J Psychiat 154: 768–775

    Article  PubMed  CAS  Google Scholar 

  • Montgomery RJV, Gonyea JC, Hooyman NR (1985) Caregiving and the experience of subjective and objective burden. Family Rel 34: 19–25

    Article  Google Scholar 

  • Morris RG, Morris LW, Britton PG (1988) Factors affecting the emotional wellbeing of the caregivers of dementia sufferers. Brit J Psychiat 153: 147–156

    Article  PubMed  CAS  Google Scholar 

  • O’Connor DW, Pollitt PA, Hyde JB, Brook CPB, Reiss BB, Roth M (1988) Do general practitioners miss dementia in elderly patients? Brit Med J 297: 1107–1110

    Article  PubMed  Google Scholar 

  • Novak M, Guest C (1989) Caregiver response to Alzheimer’s disease. Internat J Aging Human Develop 28: 67–79

    Article  CAS  Google Scholar 

  • Pearlin LI, Mullan JT, Semple SJ, Skaff MM (1990) Caregiving and the stress process: An overview of concepts and their measures. Gerontologist 30(5): 563–594

    Article  Google Scholar 

  • Platt S (1985) Measuring the burden of psychiatric illness on the family: an evaluation of some rating scales. Psychol Med 15: 383–389

    Article  PubMed  CAS  Google Scholar 

  • Pratt C, Schmall V, Wright S (1986) Family caregivers and dementia: social casework. J Contemporary Soc Work, 67: 119–124

    Google Scholar 

  • Pruchno RA, Potanishki SL (1989) Caregiving spouses: physical and mental health in perspective. J Am Geriat Soc 37: 697–705

    PubMed  CAS  Google Scholar 

  • Quayhagen MP, Quayhagen M (1988) Alzheimer’s stress: coping with the caregiving role. Gerontologist 28: 391–396

    Article  PubMed  CAS  Google Scholar 

  • Romans-Clarkson SE, Clarkson JE, Dittmen ID, Flett R, Linsell C, Mullen PE, Mullin B (1986) Impact of a handicapped child on mental health of parents. Brit Med J 293: 1395–1397

    Article  CAS  Google Scholar 

  • Schene AH (1990) Objective and subjective dimensions of family burden: towards an integrated framework for research. Soc Psychiat Psychiat Epidemiol 25: 289–297

    Article  CAS  Google Scholar 

  • Schofield H, Herrman H (1993) Characteristics of carers in Victoria. Family Matters (34): 21–36

    Google Scholar 

  • Schultz CL, Schultz NC (1990) Caring for family caregivers. Australian J Marriage Family 11: 84–93

    Google Scholar 

  • Sherman BR, Cocozza JJ (1984) Stress in families of the developmentally disabled: a literature review of factors affecting the decision to seek out-of-home placements. Family Relations 33(1): 95–103

    Article  Google Scholar 

  • Smith IV, Birchwood MJ (1987) Specific and non-specific effects of education intervention with families living with a shizophrenic relative. Brit J Psychiat 150: 645–652

    Article  PubMed  CAS  Google Scholar 

  • Stone R, Cafferata GL, Sangl J (1987) Caregivers of the frail elderly: a national profile. Gerontologist 27: 616–626

    Article  PubMed  CAS  Google Scholar 

  • Thute B (1990) Child and parent predictors of family adjustment in households containing young developmentally disabled children. Family Relations 39(3): 292–297

    Article  Google Scholar 

  • Thrner D, Frankel BG, Lewin DM (1983) Social support: conceptualization, measurement and implication for mental health. Community Mental Health 3: 67–111

    Google Scholar 

  • Wasow M (1985) Chronic schizophrenia and spouses and children compared. J Chronic Disabilities 38: 711–716

    Article  CAS  Google Scholar 

  • Watson D, Clark LA, Tellegen A (1988) Development and validation of brief measures of Positive and Negative Affect: The PANAS Scales. J Personality Soc Psychol 54: 1063–1070

    Article  CAS  Google Scholar 

  • Watson D, Pennebaker J (1989) Health complaints, stress and distress: exploring the central role of negative affectivity. Psychol Rev 96: 234–254

    Article  PubMed  CAS  Google Scholar 

  • Wells Y, Jorm AF (1987) Evaluation of a special nursing home unit for dementia sufferers: a randomised controlled comparison with community care. Australian New Zealand J Psychiat 21: 524–531

    Article  CAS  Google Scholar 

  • Whittick JE (1988) Dementia and mental handicap: emotional distress in carers. Brit J Clin Psychol 27: 167–172

    Article  Google Scholar 

  • Zarit SH, Todd PA, Zarit JM (1986) Subjective burden of husbands and wives as caregivers: a longitudinal study. Gerontologist 26: 260–266

    Article  PubMed  CAS  Google Scholar 

  • Zarit SH (1989) Issues and directions in family intervention research. In: Light E, Lebowitz BD (eds) Alzheimer’s disease treatment and familiy stress: directions of research. US Department of Health and Human Services, Public Health Services, ADAMHA & NIMH, pp 458–486

    Google Scholar 

  • Zarit S, Toseland R (1989) Current and future direction in family caregiving research. Gerontologist 29: 481–483

    Article  PubMed  CAS  Google Scholar 

Download references

Authors

Editor information

Editors and Affiliations

Rights and permissions

Reprints and permissions

Copyright information

© 1994 Springer-Verlag Berlin Heidelberg

About this paper

Cite this paper

Herrman, H., Schofield, H., Murphy, B., Singh, B. (1994). The Experiences and Quality of Life of Informal Caregivers. In: Orley, J., Kuyken, W. (eds) Quality of Life Assessment: International Perspectives. Springer, Berlin, Heidelberg. https://doi.org/10.1007/978-3-642-79123-9_10

Download citation

  • DOI: https://doi.org/10.1007/978-3-642-79123-9_10

  • Publisher Name: Springer, Berlin, Heidelberg

  • Print ISBN: 978-3-642-79125-3

  • Online ISBN: 978-3-642-79123-9

  • eBook Packages: Springer Book Archive

Publish with us

Policies and ethics