Deciding on institutionalization for a relative with dementia: The most difficult decision for caregivers

Canadian Journal on Aging

Volumn 25, Issue 2, 2006, Pages 193-205

  Caron, Chantal D ^a,c   Ducharme, Francine ^b   Griffith, Jennifer ^a  

^a UNIVERSITÉ DE SHERBROOKE   (Canada)

^b CENTRE DE RECHERCHE   (Canada)

^c UNIVERSITY INSTITUTE OF GERIATRICS OF SHERBROOKE   (Canada)

Author keywords

Aging; Decision making; Dementia; Family caregivers; Grounded theory; Institutionalization; Theoretical model

Indexed keywords

ADULT; AGED; ALZHEIMER DISEASE; ARTICLE; CAREGIVER; CLINICAL ARTICLE; CONTROLLED STUDY; DATA ANALYSIS; DECISION MAKING; DEMENTIA; ELDERLY CARE; FAMILY; FEMALE; HEALTH PRACTITIONER; HOME FOR THE AGED; HUMAN; INSTITUTIONALIZATION; LONG TERM CARE; MALE; NURSING HOME; PERCEPTION; SOCIAL PSYCHOLOGY;

EID: 33746621987     PISSN: 07149808     EISSN: None     Source Type: Journal    
DOI: 10.1353/cja.2006.0033     Document Type: Article

References (55)

1. Alzheimer Society. Common questions. Retrieved 14 April 2006 from http://www.alzheimer.ca/english/misc/faqs.htm#4.
2. 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.
3. 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.
4. Bell, J. (1996). Decision making in nursing home placement. Journal of Women and Aging, 8(1), 45-60.
5. 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.
6. Blumer, H. (1969). Symbolic interactionism: Perspective and method. Englewood Cliffs, NJ: Prentice Hall.
7. Bowers, B.J. (1989). Grounded theory: From conceptualisation to research process. In B. Starter (Ed.), Paths to knowledge: Innovative research methods in nursing (pp. 33-58). New York: National League for Nursing.
8. Caron, C.D., & Bowers, B.J. (2000). Methods and application of dimensional analysis: A contribution to concept and knowledge development in nursing. In B.L. Rodgers & K.A. Knafl (Eds.), Concept development in nursing: Foundations, techniques, and applications (2nd ed.; pp. 285-319). Philadelphia, PA: W.B. Saunders.
9. Caron, C.D., & Bowers, B.J. (2003). Deciding whether to continue, share or relinquish caregiving: Caregiver views. Qualitative Health Research, 13(9), 1251-1271.
10. Chenier, M.C. (1997). Review and analysis of caregiver burden and nursing home placement. Geriatric Nursing, 18(3), 121-126.
11. 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.
12. 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.
13. Cotrell, V.C. (1997). Awareness deficits in Alzheimer's disease: Issues in assessment and intervention. Journal of Applied Gerontology, 16(1), 71-90.
14. Farran, C.J., Keane-Hagerty, E., Salloway, S., Kupferer, S., & Wilken, CS. (1991). Finding meaning: An alternative paradigm for Alzheimer's disease family caregivers. Gerontologist, 31(4), 483-489.
15. 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.
16. 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, 555(4), 247-255.
17. 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.
18. 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.
19. 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.
20. Glaser, B.G., & Strauss, A.L. (1967). The discovery of grounded theory: Strategies for qualitative research. New York: Aldine De Gruyter.
21. 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.
22. 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.
23. Harris, P.B. (1993). The misunderstood caregiver? A qualitative study of the male caregiver of Alzheimer's disease victims. Gerontologist, 33(4), 551-556.
24. 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.
25. Hutchinson, S.A. (1993). Grounded theory: The method. In RL. Munhall & Boyd C. Oiler (Eds.), Nursing research: A qualitative perspective (2nd ed; pp. 180-212). New York: National League for Nursing.
26. 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.
27. Keating, N., Fast, J., Frederick, J., Cranswick, K., & Perrier, C. (1999). Soins aux personnes âgées au Canada: Contexte, contenu et conséquences. Ottawa: Statistique Canada.
28. Kramer, B.J. (1997). Gain in the caregiving experience: Where are we? What next? Gerontologist, 37(2), 218-232.
29. 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.
30. Liken, M.A. (2001). Caregivers in crisis: Moving a relative with Alzheimer's to assisted living. Clinical Nursing Research, 10(1), 52-68.
31. 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.
32. 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.
33. 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.
34. Naleppa, M.J. (1996). Families and the institutionalized elderly: A review. Journal of Gerontological Social Work, 27(1-2), 87-111.
35. 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.
36. Nussbaum, M. (1996). Compassion, the basic social emotion. Social Philosophy and Policy, 13(1), 27-58.
37. 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.
38. Ostbye, T., & Crosse, E. (1994). Net economic costs of dementia in Canada. Canadian Medical Association Journal, 151(10), 1457-1464.
39. Pearlin, L.I. (1992). The career of caregivers. Gerontologist, 32(5), 647.
40. 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.
41. 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.
42. 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.
43. 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.
44. Schatzman, L. (1991). Dimensional analysis: Notes on an alternative approach to the grounding of theory in qualitative research. In K.R. Maines (Ed.), Social organization and social process: Essays in honor of Anselm Strauss (pp. 303-314). New York: Aldine de Gruyter.
45. 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.
46. Schur, D., & Whitlatch, C.J. (2003). Circumstances leading to placement: A difficult caregiving decision. Lippincott's Case Management, 8(5), 187-197.
47. 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.
48. 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.
49. 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.
50. Strauss, A.L. (1987). Qualitative analysis for social scientists. New York: Cambridge University Press.
51. Strauss, A., & Corbin, J. (1990). Basics of qualitative research: Grounded theory procedures and techniques. Newbury Park, CA: Sage.
52. 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.
53. 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.
54. 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.
55. 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.