Hostname: page-component-78c5997874-94fs2 Total loading time: 0 Render date: 2024-11-20T05:24:48.120Z Has data issue: false hasContentIssue false
  • English
  • Français

Relatives of Persons Suffering from Dementia: Differences in the Burden

Published online by Cambridge University Press:  14 November 2008

Mia S. H. Duijnstee
Mia S. H. Duijnstee
Affiliation:
Department of Nursing Science, University of Utrecht, Postbox 80036, 3508 TA Utrecht, The Netherlands.
Get access Rights & Permissions [Opens in a new window]

Abstract

Partners and children play a key role in home care for persons suffering from dementia. When we compare the burdens placed on these relatives, we find large differences. On the one hand, these result from actual differences in the care situation. On the other, they arise from the differences in the way the people involved experience more or less comparable circumstances. To determine the sources of the differences in the burden on the relatives, a distinction was made between objective and subjective care-giver burden. Qualitative research, therefore, aimed to provide an understanding of the personal interpretation by the people involved. This was realised in about 40 case studies involving relatives.

Keywords

Qualitative researchcase studies of family members of patients with dementiadifferences between objective and subjective caregiver burdenintervening factors (coping, acceptance, motivation)determination of the burden of primary caregiversextending the supply of help
Type
Research Article
Information
Ageing & Society , Volume 14 , Issue 4 , December 1994 , pp. 499 - 519
Copyright
Copyright Cambridge University Press 1994

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Bogdan, R. C. and Biklen, S. K., 1982. Qualitative Research for Education. An Introduction to Theory and Methods. Allyn and Bacon, Boston.Google Scholar
Cantor, M. H., 1983. Strain among care givers: a study of experience in the United States. The Gerontologist, 23, 6, 597–604.CrossRefGoogle ScholarPubMed
Duijnstee, M. S. H., 1985. Ze lacht nog wel als ze me ziet: gesprekken met familieleden van dementerende ouderen. Intro, Nijkerk.Google Scholar
Duijnstee, M. S. H., 1992. De belasting van familieleden van dementerenden. Proefschrift. Intro, Nijkerk.Google Scholar
George, L. K. and Gwyther, L. P., 1984. The Dynamics of Caregiver-Burden: Changes in Caregiver Well-Being Over Time. Paper presented at the annual meeting of the Gerontological Society of America, San Antonio, Texas.Google Scholar
Gilhooly, M. L. M., 1984. The impact of care-giving on care-givers: Factors associated with the psychological well-being of people supporting a dementing relative in the community. British Journal of Medical Psychology, 57, 35–44.Google Scholar
Gilhooly, M. L. M., 1986. Senile dementia: Factors associated with care givers. Preference for institutional care. British Journal of Medical Psychology, 59, 165–171.Google Scholar
Glaser, B. G. and Strauss, A. L., 1967. The Discovery of Grounded Theory: Strategies for Qualitative Research. Chicago, Aldine.Google Scholar
Hattinga Verschure, J. C. M., 1981. Het verschijnsel zorg; een inleiding tot de zorgkunde. Lochum, De Tijdstroom.Google Scholar
Herz, M. I., Endicott, J. and Spitzer, R. L., 1976. Brief versus standard hospitalization: the families. American Journal of Psychiatry, 133: 7, 795–801.Google Scholar
Hoenig, J. and Hamilton, M. W., 1966a. Elderly psychiatric patients and the burden on the household. Internationale Monatschrift für Psychiatry und Neurologie, 152, 5, 281–293.Google Scholar
Hoenig, J. and Hamilton, M. W., 1966b. The schizophrenic patient in the community and his effect on the household. International Journal of Social Psychiatry, 26, 165–176.Google Scholar
Houdenhove, B. van, 1979. Is dat verdriet nu echt nodig? Over pathologische rouw en rouwtherapie. Nederlands Tijdschrift voor Geneeskunde 3: 5, 157–163.Google Scholar
Janssen, T. 1988a. Thuiszorg: 'n hele zorg, Opvattingen en ervaringen van centrale verzorg(st)ers van hulpbehoevende oudere mensen. Vakgroep Sociologie, Katholieke Universiteit Nijmegen.Google Scholar
Janssen, T. 1988b. Zorg om Mantelzorg. Tijdschrift voor Ziekenverpleging, 42, 6, 169–174.Google Scholar
Keirse, M., 1987. Het anticiperend rouwen bij familieleden van demente bejaarden. Deel II: Achtergronden van reacties op verlies en rouwreacties. Tijdschrift voor bejaarden-, kraam- en ziekenverzorging, 11, 320–324.Google Scholar
Montgomery, R. J. V., Gonyea, J. G., Hooyman, N. R., 1985. Caregiving and the Experience of Subjective and Objective Burden. Families Relations, 34, 19–26.CrossRefGoogle Scholar
Montgomery, R. J. V., Stull, D. E. and Borgatta, E. F., 1985. Measurement and the analysis of burden. Research on Ageing, 7, 1, 137–152.CrossRefGoogle ScholarPubMed
Morycz, R. K., 1985. Caregiving strain and the desire to institutionalize family members with Alzheimer's Disease. Research on Ageing, 7, 3, 329–361.Google Scholar
Niederehe, G. and Frugé, E., 1984. Dementia and family dynamics; clinical research issues. Journal of Geriatric Psychiatry, 17, 21–56.Google Scholar
Pai, S. and Kapur, R. L., 1981. The burden on the family of a psychiatric patient: development of an interview schedule. British Journal of Psychiatry, 138, 332–335.Google Scholar
Poulshock, S. W. and Deimling, G. T., 1984. Families caring for elders in residence: Issues in the measurements of burden. Journal of Gerontology, 39, 2, 230–239.CrossRefGoogle ScholarPubMed
Thompson, E. H. and Doll, W., 1982. The Burden of Families Coping with the Mentally Ill: An invisible Crisis. Family relations, 31: 3, 379–388.CrossRefGoogle Scholar
Zarit, H., Orr, K. and Zarit, M., 1985., The Hidden Victims of Alzheimer's Disease: Families under Stress. New York University Press, New York/London.Google Scholar