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Living with a Memory-Impaired Spouse: (Re)cognizing the Experience*

Published online by Cambridge University Press:  29 November 2010

Deborah L. O'Connor
Deborah L. O'Connor
Affiliation:
University of British Columbia
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Abstract

Spousal caregivers are the most vulnerable of all caregivers to the stresses associated with the caregiving role, yet they are the least likely of all caregivers to utilize formal support services. This low use of services is poorly understood. To develop insight into this issue, this qualitative study explored how spousal caregivers made sense of the personal experience of living with a memory-impaired partner. The goal was to better understand the interface between this personal experience and the use of formal support services. Information was gathered through the use of unstructured interviews with 14 spouses, most of whom had turned down available formal support services. Analysis of their transcripts revealed the availability of four discourses, or story-lines, for framing the experience. These included two competing story-lines which were used to structure individuals' caring activities and two other competing story-lines which provided the framework for judging one's personal competence within the experience. This paper examines these four discourses and highlights how each influences the meaning associated with the use of formal support services. This analysis makes visible the multiple and sometimes contradictory meanings that service use may have for spouses caring for a memory-impaired partner.

Résumé

Les conjoints sont les soignants les plus vulnérables aux différentes formes de stress associées au fait de soigner. Ils sont pourtant ceux qui font le moins appel aux ressources de soutien formel. Les motifs de cette sous-utilisation sont mal compris. Pour développer un aperçu de cette question, les auteurs ont mené une étude qualitative qui explore comment les conjoints soignants rationalisent leur expérience personnelle de vie auprès d'un partenaire à la mémoire déficiente. L'objectif de l'étude visait à mieux comprendre le lien entre cette expérience et l'utilisation des ressources de soutien formel. L'information a été recueillie au moyen d'entrevues non structurées menées auprès de 14 conjoints dont la plupart avaient refusé des services de soutien formel qui étaient disponibles. L'analyse des transcriptions révèle l'existence de quatre discours, ou trames, permettant d'encadrer l'expérience. Celles-ci comprennent deux trames concurrentes, utilisées pour structurer les activités de soin et deux autres trames, elles aussi concurrentes, qui constituent le cadre de référence permettant de mesurer la compétence personnelle vis-à-vis l'expérience. La présente communication examine ces quatre discours et montre comment chacun influence la signification associée au recours à des services de soutien formel. Cette analyse permet de voir les significations multiples et souvent contradictoires que l'utilisation de ces services peut avoir pour les conjoints qui doivent soigner un partenaire à la mémoire déficiente.

Keywords

SpouseCaregivingFormal SupportService Use.Conjointsoignersoutien formelutilisation des services.
Type
Articles
Information
Canadian Journal on Aging / La Revue canadienne du vieillissement , Volume 18 , Issue 2 , Été/Summer 1999 , pp. 211 - 235
Copyright
Copyright © Canadian Association on Gerontology 1999

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References

Anderson, R., & Newman, J. (1973). Societal and individual determinants of medical care use in the United States. Millbank Memorial Fund Quarterly, 51, 95–124.CrossRefGoogle Scholar
Aronson, J. (1988). Women's experience in giving and receiving care: Pathways to social change. Unpublished doctoral dissertation, University of Toronto.Google Scholar
Aronson, J. (1998). Dutiful daughters and undemanding mothers. In Baines, C.T., Evans, P.M. & Neysmith, S.M. (Eds.), Women's caring: Feminist perspectives on social welfare, 2nd ed. (pp. 114–138) Toronto: Oxford University Press.Google Scholar
Barnes, C., Given, B., & Given, C. (1992). Caregivers of elderly relatives: Spouses and adult children. Health and Social Work, 17(4), 282–288.CrossRefGoogle ScholarPubMed
Bass, D., Looman, W., & Ehrlich, P. (1992). Predicting the volume of health and social services: Integrating cognitive impairment in the modified Anderson Framework. Gerontologist, 32(1), 33–43.CrossRefGoogle Scholar
Bass, D.M., & Noelker, L.S. (1987). The influence of family caregivers on elder's use of in-home services: An expanded conceptual framework. Journal of Health and Social Behavior, 25(June), 184–196.CrossRefGoogle Scholar
Biegel, D.E., Sales, E., & Schulz, R. (Eds.). (1991). Family caregiving in chronic illness. Newbury Park: Sage.Google Scholar
Burman, E., & Parker, I. (Eds.). (1993). Discourse analytic research. New York: Routledge.Google Scholar
Chambon, A. (1994). The dialogical analysis of case materials. In Sherman, E. and Reid, W.J. (Eds.) Qualitative research in social work. New York: Columbia University Press.Google Scholar
Chappell, N.L., & Blandford, A. (1987). Health service utilization by elderly persons. Canadian Journal of Sociology, 12(3), 195–215.CrossRefGoogle Scholar
Cohen, C., Gold, D., Shulman, K., Wortley, J., McDonald, G., & Wargon, M. (1993). Factors determining the decision to institutionalize dementing individuals: A prospective study. Gerontologist, 33(6), 714–720.CrossRefGoogle ScholarPubMed
Collins, C., King, S., Given, C.W., & Given, B. (1994). When is a service of service? Understanding community service use among family caregivers of Alzheimer's patients. In Light, E., Niederehe, G. & Lebowitz, B. (Eds.), Stress effects on family caregivers of Alzheimer patients. New York: Springer Publishing Company.Google Scholar
Collins, C., Stommel, M., King, S., & Given, C. (1991). Assessment of the attitudes of family caregivers toward community services. Gerontologist, 31(6), 756–761.CrossRefGoogle ScholarPubMed
Denton, M. (1997). The linkage between informal and formal care of the elderly. Canadian Journal on Aging, 16(1), 30–50.CrossRefGoogle Scholar
Farran, C., Keane-Hagarty, E., Salloway, S., Kupferer, S., & Wilken, C. (1991). Finding meaning: An alternative paradigm for Alzheimer's disease family caregivers. Gerontologist, 31(4), 483–489.CrossRefGoogle ScholarPubMed
Fraser, N. (1990). Struggle over needs: Outline of a socialist-feminist critical theory of late capitalist political change. In Gordon, L. (Ed.), Women, the State and welfare. Madison: The University of Wisconsin Press.Google Scholar
Ganzer, C., & England, S.E. (1994). Alzheimer's care and service utilization: Generating practice concepts from empirical findings and narratives. Health and Social Work, 19(3), 174–181.CrossRefGoogle ScholarPubMed
George, L., & Gwyther, L. (1986). Caregiver well-being: A multidimensional examination of family caregivers of demented adults. Gerontologist, 26(3), 253–259.CrossRefGoogle ScholarPubMed
Gilligan, C. (1982). In a different voice. Cambridge, MA: Harvard University PressGoogle Scholar
Gonyea, J.G., & Silverstein, N.M. (1991). The role of Alzheimer's disease support groups in families' utilization of community services. Journal of Gerontological Social Work, 16(3/4), 43–45.CrossRefGoogle Scholar
Greenspan, M. (1993). A new approach to women & therapy (2nd ed.). Blue Ridge Summit, PA: Tab Books.Google Scholar
Gwyther, L. (1994) Service delivery and utilization: Research directions and clinical implications. In Light, E., Niederehe, G. & Lebowitz, B. (Eds.), Stress effects on family caregivers of Alzheimer's patients. New York: Springer Publishing Company.Google Scholar
Hanely, R.J., & Weiner, J.M. (1991). Use of paid home care by the chronically disabled elderly. Research on Aging, 13(3), 310–332.CrossRefGoogle Scholar
Jack, D.C. (1991). Silencing the self. Cambridge, MA: Harvard University Press.Google Scholar
Kaschak, E. (1992). Engendered lives. Boston: Basic Books.Google Scholar
King, S., Collins, C, & Liken, M. (1995). Values and the use of community services. Qualitative Health Research, 5(3), 332–347.CrossRefGoogle Scholar
Kosloski, K., & Montgomery, R. (1994). Investigating patterns of service use by families providing care for dependent elders. Journal of Aging & Health, 6(1) 17–38.CrossRefGoogle ScholarPubMed
Miller, B. (1990). Gender differences in spouse management of the caregiving role. In Abel, E.K. & Nelson, M.K. (Eds.), Circles of care (pp. 92–104). New York: State University of New York Press.Google Scholar
Miller, B., & Cafasso, L. (1992). Gender differences in caregiving: Fact or artifact? Gerontologisi, 32(4), 498–507.CrossRefGoogle ScholarPubMed
Miller, J.B. (1986). Toward a new psychology of women (2nd ed.). Boston: Beacon Press.Google Scholar
Mitchell, J., & Krout, J. (1998). Discretion and service use among older adults: The behavioural model revisited. Gerontologist, 18(2), 159–168.CrossRefGoogle Scholar
Mutchler, J., & Bullers, S. (1994). Gender differences in formal care use in later life. Research on Aging, 16(3), 235–250.CrossRefGoogle Scholar
Neysmith, S. (1998) From home care to social care: The value of a vision. In Baines, C.T., Evans, P.M & Neysmith, S.M (Eds.), Women's caring: feminist perspectives on social welfare (2nd ed., pp. 233–249). Toronto: Oxford University Press.Google Scholar
Noelker, L.S. (1992). Research on caregivers' needs and services: Where do we go from here? In Conceptual and methodological issues in family caregiving research. Toronto: University of Toronto Press.Google Scholar
Noonan, A., Tennstedt, S., & Rebelsky, F. (1996). Making the best of it: Themes of meaning among informal caregivers to the elderly. Journal of Aging Studies, 10(4), 313–327.CrossRefGoogle Scholar
O'Connor, D.L. (1995a). Supporting spousal caregivers: Exploring the meaning of service use. Families in Society, 76(5), 296–305.CrossRefGoogle Scholar
O'Connor, D.L. (1995b). Caring for a memory-impaired spouse: A gender-sensitive perspective. Journal of Women and Aging, 7(3).CrossRefGoogle Scholar
Opie, A. (1994). The instability of the caring body: Gender and caregivers of confused older persons. Qualitative Health Research, 4(1), 31–50.CrossRefGoogle Scholar
Penning, M. (1995). Cognitive impairment, caregiver burden and the utilization of home health services. Journal of Aging and Health, 7(2), 233–253.CrossRefGoogle ScholarPubMed
Reissman, C.K. (1993). Narrative analysis. Newbury Park: Sage.Google Scholar
Ristock, J., & Penneil, J. (1996). Community research as empowerment: Feminist links, postmodern interruptions. Toronto: Oxford University Press.Google Scholar
Rosenthal, G. (1993) Reconstruction of life stories: Principles of selection in generating stories for narrative biographical interviews. In Josselson, R. & Lieblich, A. (Eds.), The narrative study of lives. Newbury Park: Sage.Google Scholar
Rosenwald, G.C., & Ochberg, R.L. (Eds.). (1992). Storied lives. New Haven: Yale University Press.Google Scholar
Rudin, D. (1994) Caregiver attitudes regarding utilization and usefulness of respite services for people with Alzheimer's disease. Journal of Gerontological Social Work, 23(1/2), 85–107.CrossRefGoogle Scholar
Straw, L.B., O'Bryant, S.L., Meddaugh, D.I. (1991). Support system participation in spousal caregiving: Alzheimer's disease versus other illness. The Journal of Applied Gerontology, 10(3), 359–371.CrossRefGoogle Scholar
Tennstedt, S., Sullivan, L., McKinlay, J., & D'Agostino, R. (1990). How important is functional status as a predictor of service use by older people? Journal of Aging and Health, 2(4), 439–461.CrossRefGoogle ScholarPubMed
Twigg. (1993). Integrating carers into the service system: Six strategic responses. Ageing and Society, 13, 141–170.CrossRefGoogle Scholar
Walker, A., & Pratt, C. (1995). Informal caregiving to aging family members: A critical review. Family Relations, 44(4), 402–412.CrossRefGoogle Scholar
Ward-Griffin, C., & Ploeg, J. (1997). A feminist approach to health promotion for older women. Canadian Journal on Aging, 16(2), 279–296.CrossRefGoogle Scholar
Wenger, G.C. (1991). Elderly carers: The need for appropriate intervention. Ageing and Society, 10, 197–219.CrossRefGoogle Scholar
Winslow, B. (1997). Effects of formal supports on stress outcomes in family caregivers of Alzheimer's patients. Research in Nursing & Health, 20, 27–37.3.0.CO;2-W>CrossRefGoogle ScholarPubMed