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Deciding on Institutionalization for a Relative with Dementia: The Most Difficult Decision for Caregivers*

Published online by Cambridge University Press:  31 March 2010

Chantal D. Caron ,
Francine Ducharme  and
Jennifer Griffith
Chantal D. Caron*
Affiliation:
Research Centre on Aging, Université de Sherbrooke
Francine Ducharme
Affiliation:
Research Centre, Institut universitaire de gériatrie de Montréal
Jennifer Griffith
Affiliation:
Research Centre on Aging, Université de Sherbrooke
*
Requests for offprints should be sent to: / Les demandes de tirés-à-part doivent être addressées à : Chantal Caron, RN, Ph.D, Research Centre on Aging, 1036, rue Belvédère Sud, Sherbrooke, QC J1H 4C4. (Chantal.Caron@USherbrooke.ca)
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Abstract

The decision to move a family member with dementia to a nursing home is a difficult experience for caregivers. Complex psychosocial factors are involved and knowledge of predictive factors alone is insufficient. Using grounded theory, this study explores the decision-making process with regards to institutionalization, from the perspective of family caregivers. Fourteen people who moved a relative to long-term care in the preceding 6 months were interviewed. Data analysis using comparative analysis and line-by-line dimensional analysis was used to develop a theoretical model of the decision-making process. Three factors within the model were central to the process: (a) caregivers' perceptions of their ability to provide care, (b) caregivers' evaluations of their relatives' ability to make care decisions, and (c) the evolving influence of contextual factors and interactions with healthcare professionals. The contribution of these findings to new conceptualizations of institutionalization is discussed.

Résumé

La décision d'institutionnaliser un proche âgé atteint de démence, est décrite comme étant la plus difficile à prendredans l'expérience des aidants familiaux (AF). Plusieurs facteurs psychosociaux sont impliqués dans le processusdécisionnel et la connaissance des facteurs prédictifs au placement n'est pas suffisante. Cette étude qualitative(théorisation ancrée) a permis l'émergence d'un modèle théorique axé sur l'expérience des AF impliqués dansle processus décisionnel. Des entrevues en profondeur ont été réalisées auprès de quatorze AF qui avaientinstitutionnalisé un proche âgé dans les derniers six mois. L'analyse comparative et dimensionnelle des données a étéutilisée pour développer un modèle théorique du processus décisionnel. Trois facteurs du modèle se sont révéléscentraux au processus décisionnel : (a) la perception des AF en regard de leur capacité à prendre soin de leur procheâgé ; (b) l'évaluation que les AF font de la capacité de leur proche âgé à prendre des décisions qui les concernent ;(c) l'influence des facteurs contextuels et des interactions avec les intervenants professionnels sur ce processuscomplexe. L'impact de ces résultats sur la conceptualisation du processus décisionnel lié à l'institutionnalisation d'unproche atteint de démence est discuté.

Keywords

aginginstitutionalizationdementiadecision makingfamily caregiversgrounded theorytheoretical modelvieillissementinstitutionnalisationdémenceprise de décisionaidants familiauxthéorisation ancréemodèle théorique
Type
Articles
Information
Canadian Journal on Aging / La Revue canadienne du vieillissement , Volume 25 , Issue 2 , Summer/Été 2006 , pp. 193 - 205
Copyright
Copyright © Canadian Association on Gerontology 2006

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Footnotes

*

This research was funded in part by the Canadian Institutes of Health Research.

References

Alzheimer Society. Common questions. Retrieved 14 April 2006 from http://www.alzheimer.ca/english/misc/faqs.htm#4.Google Scholar
Aneshensel, C.S., Pearlin, L.I. & Schuler, R.H. (1993). Stress, role captivity, and the cessation of caregiving. Journal of Health and Social Behavior, 34(1), 54–70.Google Scholar
Annerstedt, L., Elmståhl, S., Ingvad, B., & Samuelsson, S.-M. (2000). Family caregiving in dementia: An analysis of the caregiver's burden and the “breaking point” when home care becomes inadequate. Scandinavian Journal of Public Health, 28(1), 23–31.Google ScholarPubMed
Bell, J. (1996). Decision making in nursing home placement. Journal of Women and Aging, 8(1), 45–60.Google Scholar
Black, W., & Almeida, O.P. (2004). A systematic review of the association between the behavioural and psychological symptoms of dementia and burden of care. International Psychogeriatrics, 16, 295–315.CrossRefGoogle ScholarPubMed
Blumer, H. (1969). Symbolic interactionism: Perspective and method. Englewood Cliffs, NJ: Prentice Hall.Google Scholar
Bowers, B.J. (1989). Grounded theory: From conceptualisation to research process. In Starter, B. (Ed.), Paths to knowledge: Innovative research methods in nursing (pp. 33–58). New York: National League for Nursing.Google Scholar
Caron, C.D., & Bowers, B.J. (2000). Methods and application of dimensional analysis: A contribution to concept and knowledge development in nursing. In Rodgers, B.L. & Knafl, K.A. (Eds.), Concept development in nursing: Foundations, techniques, and applications (2nd ed.; pp. 285–319). Philadelphia, PA: W.B. Saunders.Google Scholar
Caron, C.D., & Bowers, B.J. (2003). Deciding whether to continue, share or relinquish caregiving: Caregiver views. Qualitative Health Research, 13(9), 1251–1271.CrossRefGoogle ScholarPubMed
Chenier, M.C. (1997). Review and analysis of caregiver burden and nursing home placement. Geriatric Nursing, 18(3), 121–126.CrossRefGoogle ScholarPubMed
Cohen, C.A, Gold, D.P, Shulman, K.I, Wortley, J.T, Mcdonald, G., & Wargon, M. (1993). Factors determining the decision to institutionalize dementing individuals: A prospective study. Gerontologist, 33(6), 714–720.Google Scholar
Cooke, D.D., McNally, L., Mulligan, K.T., Harrison, M.J.G., & Newman, S.P. (2001). Psychosocial interventions for caregivers of people with dementia: A systematic review. Aging and Mental Health, 5(2), 120–135.Google Scholar
Cotrell, V.C. (1997). Awareness deficits in Alzheimer's disease: Issues in assessment and intervention. Journal of Applied Gerontology, 16(1), 71–90.Google Scholar
Farran, C.J., Keane-Hagerty, E., Salloway, S., Kupferer, S., & Wilken, C.S. (1991). Finding meaning: An alternative paradigm for Alzheimer's disease family caregivers. Gerontologist, 31(4), 483–489.CrossRefGoogle ScholarPubMed
Fisher, L., & Lieberman, M.A. (1999). A longitudinal study of predictors of nursing home placement for patients with dementia: The contribution of family characteristics. Gerontologist, 39(6), 677–686.Google Scholar
Gaugler, J.E., Edwards, A.B., Femia, E.E., Zarit, S.H., Stephens, M.P., Townsend, A., et al. (2000). Predictors of institutionalization of cognitively impaired elders: Family help and the timing of placement. Journal of Gerontology: Psychological Sciences, 55B(4), 247–255.Google Scholar
Gaugler, J.E., Kane, R.L., Kane, R.A., Clay, T., & Newcomer, R. (2003). Caregiving and institutionalization of cognitively impaired older adults: Utilizing dynamic predictors of change. Gerontologist, 43(2), 219–229.Google Scholar
Gaugler, J.E., Pearlin, L.I., Leitsch, S.A., & Davey, A. (2001). Relinquishing in-home dementia care: Difficulties and perceived helpfulness during the nursing home transition. American Journal of Alzheimer's Disease and Other Dementias, 16(1), 32–42.Google Scholar
Gaugler, J.E., Zarit, S.H., & Pearlin, L.I. (1999). Caregiving and institutionalization: Perceptions of family conflict and socioemotional support. International Journal of Aging and Human Development, 49(1), 1–25.Google Scholar
Glaser, B.G., & Strauss, A.L. (1967). The discovery of grounded theory: Strategies for qualitative research. New York: Aldine De Gruyter.Google Scholar
Gold, D.P., Reis, M.F., Markiewicz, D., & Andres, D. (1995). When home caregiving ends: A longitudinal study of outcomes for caregivers of relatives with dementia. Journal of the American Geriatrics Society, 43(1), 10–16.Google Scholar
Gouvernement du Québec. (2003). Un milieu de vie de qualité pour les personnes hébergées en CHSLD. Orientations ministérielles. Quebec: La direction des communications du ministère de la Santé et des Services sociaux.Google Scholar
Harris, P.B. (1993). The misunderstood caregiver? A qualitative study of the male caregiver of Alzheimer's disease victims. Gerontologist, 33(4), 551–556.Google Scholar
Hébert, R., Dubois, M.-F., Wolfson, C., Chambers, L., & Cohen, C. (2001). Factors associated with long-term institutionalization of older people with dementia: Data from the Canadian Study of Health and Aging. Journal of Gerontology, 56A(11), M693–M699.Google Scholar
Hutchinson, S.A. (1993). Grounded theory: The method. In Munhall, P.L. & Oiler, Boyd C. (Eds.), Nursing research: A qualitative perspective (2nd ed; pp. 180–212). New York: National League for Nursing.Google Scholar
Jutras, S., & Lavoie, J.P. (1995). Living with an impaired elderly person: The informal caregiver's physical and mental health. Journal of Aging and Health, 7(1), 46–73.Google Scholar
Keating, N., Fast, J., Frederick, J., Cranswick, K., & Perrier, C. (1999). Soins aux personnes agées au Canada: Contexte, contenu et conséquences. Ottawa: Statistique Canada.Google Scholar
Kramer, B.J. (1997). Gain in the caregiving experience: Where are we? What next? Gerontologist, 37(2), 218–232.Google Scholar
Lawrence, R.H., Tennstedt, S.L., & Assmann, S.F. (1998). Quality of the caregiver-care recipient relationship: Does it offset negative consequences of caregiving for family caregivers? Psychology and Aging, 13(1), 150–158.Google Scholar
Liken, M.A. (2001). Caregivers in crisis: Moving a relative with Alzheimer's to assisted living. Clinical Nursing Research, 10(1), 52–68.Google Scholar
Lundh, U., Sandberg, J., & Nolan, M. (2000). “I don't have any other choice”: Spouses' experiences of placing a partner in a care home for older people in Sweden. Journal of Advanced Nursing, 32(5), 1178–1186.Google Scholar
Miller, E.A., & Weissert, W.G. (2000). Predicting elderly people's risk for nursing home placement, hospitalization, functional impairment, and mortality: A synthesis. Medical Care Research and Review, 57(3), 259–297.Google Scholar
Montgomery, R.J.V., & Kosloski, K. (1994). A longitudinal analysis of nursing home placement for dependent elders cared for by spouses vs. adult children. Journals of Gerontology: Social Sciences, 49(2), S62–S74.Google Scholar
Naleppa, M.J. (1996). Families and the institutionalized elderly: A review. Journal of Gerontological Social Work, 27(1–2), 87–111.Google Scholar
Nolan, M., & Dellasega, C. (2000). “I really feel I've let him down”: Supporting family carers during long-term care placement for elders. Journal of Advanced Nursing, 31(4), 759–767.CrossRefGoogle ScholarPubMed
Nussbaum, M. (1996). Compassion, the basic social emotion. Social Philosophy and Policy, 13(1), 27–58.CrossRefGoogle Scholar
Ory, M.G., Hoffman, R.R., Yee, J.L., Tennstedt, S., & Schulz, R. (1999). Prevalence and impact of caregiving: A detailed comparison between dementia and non-dementia caregivers. Gerontologist, 39(2), 177–185.Google Scholar
Ostbye, T., & Crosse, E. (1994). Net economic costs of dementia in Canada. Canadian Medical Association Journal, 151(10), 1457–1464.Google Scholar
Pearlin, L.I. (1992). The career of caregivers. Gerontologist, 32(5), 647.Google Scholar
Popay, J., Rogers, A., & Williams, G. (1998). Rationale and standards for the systematic review of qualitative literature in health services research. Qualitative Health Research, 8(3), 341–351.Google Scholar
Ryan, A.A., & Scullion, H.F. (2000). Nursing home placement: An exploration of the experiences of family carers. Journal of Advanced Nursing, 32(5), 1187–1195.Google Scholar
Sandberg, J., Lundh, U., & Nolan, M.R. (2001). Placing a spouse in a care home: The importance of keeping. Journal of Clinical Nursing, 10(3), 406–416.Google Scholar
Sandberg, J., Nolan, M.R., & Lundh, U. (2002). Moving into a care home: The role of adult children in the placement process. International Journal of Nursing Studies, 39(3), 353–362.Google Scholar
Schatzman, L. (1991). Dimensional analysis: Notes on an alternative approach to the grounding of theory in qualitative research. In Maines, K.R. (Ed.), Social organization and social process: Essays in honor of Anselm Strauss (pp. 303–314). New York: Aldine de Gruyter.Google Scholar
Schulz, R., & Beach, S.R. (1999). Caregiving as a risk factor for mortality: The caregiver health effects study. Journal of the American Medical Association, 282(23), 2215–2229.Google Scholar
Schur, D., & Whitlatch, C.J. (2003). Circumstances leading to placement: A difficult caregiving decision. Lippincott's Case Management, 8(5), 187–197.Google Scholar
Smith, G.E., Kokmen, E., & O'Brien, P.C. (2000). Risk factors for nursing home placement in a population-based dementia cohort. Journal of the American Geriatrics Society, 48(5), 519–525.Google Scholar
Spruytte, N., Van Audenhove, C., & Lammertyn, F. (2001). Predictors of institutionalization of cognitively-impaired elderly cared for by their relatives. International Journal of Geriatric Psychiatry, 16, 1119–1128.Google Scholar
Stevens, A., Owen, J., Roth, D., Clay, O., Bartolucci, A., & Haley, W. (2004). Predictors of time to nursing home placement in white and African American individuals with dementia. Journal of Aging and Health, 16(3), 375–397.Google Scholar
Strauss, A.L. (1987). Qualitative analysis for social scientists. New York: Cambridge University Press.Google Scholar
Strauss, A., & Corbin, J. (1990). Basics of qualitative research: Grounded theory procedures and techniques. Newbury Park, CA: Sage.Google Scholar
Thompson, E.H., Futterman, A.M., Gallagher-Thompson, D., Rose, J.M., & Lovett, S.B. (1993). Social support and caregiving burden in family caregivers of frail elders. Journal of Gerontology: Social Sciences, 48(5), S245–S254.Google Scholar
Whitlatch, C.J., Feinberg, L.F., & Stevens, E.J. (1999). Predictors of institutionalization for persons with Alzheimer's disease and the impact on family caregivers. Journal of Mental Health and Aging, 5(3), 275–288.Google Scholar
Yaffe, K., Fox, P., Newcomer, R., Sands, L., Lindquist, K., Dane, K., et al. (2002). Patient and caregiver characteristics and nursing home placement in patients with dementia. Journal of the American Medical Association, 287(16), 2090–2097.Google Scholar
Young, R.F., Kosloski, K., & Montgomery, R.J. (1998). Psychosocial factors in institutionalization of Alzheimer's patients. Journal of Clinical Psychology, 4(3), 241–251.Google Scholar