Skip to main content Accessibility help
×
Home
Hostname: page-component-559fc8cf4f-dxfhg Total loading time: 0.363 Render date: 2021-03-03T12:36:59.797Z Has data issue: true Feature Flags: { "shouldUseShareProductTool": true, "shouldUseHypothesis": true, "isUnsiloEnabled": true, "metricsAbstractViews": false, "figures": false, "newCiteModal": false, "newCitedByModal": true }

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
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
Corresponding

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.

Type
Articles
Copyright
Copyright © Canadian Association on Gerontology 2006

Access options

Get access to the full version of this content by using one of the access options below.

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), 5470.CrossRefGoogle ScholarPubMed
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), 2331.Google ScholarPubMed
Bell, J. (1996). Decision making in nursing home placement. Journal of Women and Aging, 8(1), 4560.CrossRefGoogle 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, 295315.CrossRefGoogle Scholar
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. 3358). 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. 285319). 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), 12511271.CrossRefGoogle ScholarPubMed
Chenier, M.C. (1997). Review and analysis of caregiver burden and nursing home placement. Geriatric Nursing, 18(3), 121126.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), 714720.CrossRefGoogle ScholarPubMed
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), 120135.CrossRefGoogle ScholarPubMed
Cotrell, V.C. (1997). Awareness deficits in Alzheimer's disease: Issues in assessment and intervention. Journal of Applied Gerontology, 16(1), 7190.CrossRefGoogle 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), 483489.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), 677686.CrossRefGoogle ScholarPubMed
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), 247255.CrossRefGoogle 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), 219229.CrossRefGoogle ScholarPubMed
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), 3242.CrossRefGoogle ScholarPubMed
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), 125.CrossRefGoogle ScholarPubMed
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), 1016.CrossRefGoogle ScholarPubMed
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), 551556.CrossRefGoogle ScholarPubMed
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), M693M699.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. 180212). 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), 4673.CrossRefGoogle ScholarPubMed
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), 218232.CrossRefGoogle ScholarPubMed
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), 150158.CrossRefGoogle ScholarPubMed
Liken, M.A. (2001). Caregivers in crisis: Moving a relative with Alzheimer's to assisted living. Clinical Nursing Research, 10(1), 5268.CrossRefGoogle ScholarPubMed
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), 11781186.CrossRefGoogle 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), 259297.CrossRefGoogle ScholarPubMed
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), S62S74.CrossRefGoogle ScholarPubMed
Naleppa, M.J. (1996). Families and the institutionalized elderly: A review. Journal of Gerontological Social Work, 27(1–2), 87111.CrossRefGoogle 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), 759767.CrossRefGoogle ScholarPubMed
Nussbaum, M. (1996). Compassion, the basic social emotion. Social Philosophy and Policy, 13(1), 2758.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), 177185.CrossRefGoogle Scholar
Ostbye, T., & Crosse, E. (1994). Net economic costs of dementia in Canada. Canadian Medical Association Journal, 151(10), 14571464.Google Scholar
Pearlin, L.I. (1992). The career of caregivers. Gerontologist, 32(5), 647.CrossRefGoogle 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), 341351.CrossRefGoogle ScholarPubMed
Ryan, A.A., & Scullion, H.F. (2000). Nursing home placement: An exploration of the experiences of family carers. Journal of Advanced Nursing, 32(5), 11871195.CrossRefGoogle ScholarPubMed
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), 406416.CrossRefGoogle 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), 353362.CrossRefGoogle ScholarPubMed
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. 303314). 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), 22152229.CrossRefGoogle ScholarPubMed
Schur, D., & Whitlatch, C.J. (2003). Circumstances leading to placement: A difficult caregiving decision. Lippincott's Case Management, 8(5), 187197.CrossRefGoogle ScholarPubMed
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), 519525.CrossRefGoogle 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, 11191128.CrossRefGoogle ScholarPubMed
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), 375397.CrossRefGoogle ScholarPubMed
Strauss, A.L. (1987). Qualitative analysis for social scientists. New York: Cambridge University Press.CrossRefGoogle 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), S245S254.CrossRefGoogle ScholarPubMed
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), 275288.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), 20902097.CrossRefGoogle ScholarPubMed
Young, R.F., Kosloski, K., & Montgomery, R.J. (1998). Psychosocial factors in institutionalization of Alzheimer's patients. Journal of Clinical Psychology, 4(3), 241251.Google Scholar

Full text views

Full text views reflects PDF downloads, PDFs sent to Google Drive, Dropbox and Kindle and HTML full text views.

Total number of HTML views: 0
Total number of PDF views: 269 *
View data table for this chart

* Views captured on Cambridge Core between September 2016 - 3rd March 2021. This data will be updated every 24 hours.

Send article to Kindle

To send this article to your Kindle, first ensure no-reply@cambridge.org is added to your Approved Personal Document E-mail List under your Personal Document Settings on the Manage Your Content and Devices page of your Amazon account. Then enter the ‘name’ part of your Kindle email address below. Find out more about sending to your Kindle. Find out more about sending to your Kindle.

Note you can select to send to either the @free.kindle.com or @kindle.com variations. ‘@free.kindle.com’ emails are free but can only be sent to your device when it is connected to wi-fi. ‘@kindle.com’ emails can be delivered even when you are not connected to wi-fi, but note that service fees apply.

Find out more about the Kindle Personal Document Service.

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

Send article to Dropbox

To send this article to your Dropbox account, please select one or more formats and confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your <service> account. Find out more about sending content to Dropbox.

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

Send article to Google Drive

To send this article to your Google Drive account, please select one or more formats and confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your <service> account. Find out more about sending content to Google Drive.

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

Reply to: Submit a response


Your details


Conflicting interests

Do you have any conflicting interests? *