Hostname: page-component-78c5997874-mlc7c Total loading time: 0 Render date: 2024-11-18T04:28:01.669Z Has data issue: false hasContentIssue false
  • English
  • Français

Making Care Decisions in Home-Based Dementia Care: Why Context Matters*

Published online by Cambridge University Press:  07 December 2012

Oona St-Amant ,
Catherine Ward-Griffin ,
Ryan T. DeForge ,
Abe Oudshoorn ,
Carol McWilliam ,
Dorothy Forbes ,
Marita Kloseck  and
Jodi Hall
Oona St-Amant*
Affiliation:
Arthur Labatt Family School of Nursing, The University of Western Ontario
Catherine Ward-Griffin
Affiliation:
Arthur Labatt Family School of Nursing, The University of Western Ontario
Ryan T. DeForge
Affiliation:
Health and Rehabilitation Sciences, The University of Western Ontario
Abe Oudshoorn
Affiliation:
Arthur Labatt Family School of Nursing, The University of Western Ontario
Carol McWilliam
Affiliation:
Arthur Labatt Family School of Nursing, The University of Western Ontario
Dorothy Forbes
Affiliation:
Faculty of Nursing, University of Alberta
Marita Kloseck
Affiliation:
School of Health Studies, The University of Western Ontario
Jodi Hall
Affiliation:
Health and Rehabilitation Sciences, The University of Western Ontario
*
†Correspondence and requests for offprints should be sent to / La correspondance et les demandes de tirés-à-part doivent être adressées à: Oona St-Amant, R.N., M.ScN. Faculty of Health Sciences Arthur Labatt Family School of Nursing The University of Western Ontario Rm H004B, Health Sciences Addition London, ON N6A 5C1 (ostamant@uwo.ca)
Get access Rights & Permissions [Opens in a new window]

Résumé

D’ici à 2038, le nombre d’heures de soins non rémunérées aux aînés offert par les membres de la famille devraient tripler. Les membres des familles sont souvent suppliés d’aider dans le processus parce que vivre avec la démence peut inhiber la capacité pour prendre une décision. Cette étude ethnographique a soumis les relations au sein de soins de la démence à domicile à un examen critique par le biais des entrevues face-à-face et les observations des participants des clients, des aidants naturels et des prestataires de soins à domicile. Les résultats ont révélé comment les décisions sont imposées dans le contexte du système de soins à domicile formels, et ont mis en évidence trois thèmes: (1) L’accommodation de la compétence/incompétence, comme définie cliniquement; (2) La prise de décisions inopportunes; et (3) Le renforcement de l’exclusion des déments dans la prise de décision. Ces thèmes illuminent la façon dont les valeurs culturelles (la compétence), les croyances (l’immuabilité du système) et les pratiques (le réglage des décisions) dans le système de soins à domicile sont finalement déterministes dans la prise de décisions pour les déments et leurs aidants. Afin d’optimiser la santé des déments qui se font soignés à domicile, il faut accorder d’attention supplémentaire aux pratiques collaboratives et inclusives des membres des familles.

Keywords

prestation de soinsprise de décisionsrelations familialesdémencesoins à domicilesoins infirmierscaregivingdecision makingfamily relationshipsdementiahome carenursing
Type
Articles
Information
Canadian Journal on Aging / La Revue canadienne du vieillissement , Volume 31 , Issue 4 , December 2012 , pp. 423 - 434
Copyright
Copyright © Canadian Association on Gerontology 2012 

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.)

Footnotes

*

This study was funded by Canadian Institutes of Health Research (IA) and Alzheimer’s Society of Canada.

Disclosure: There is no conflict of interests/financial disclosures

References

Anastasi, A., & Urbina, S. (1997). Psychological testing (7th ed.). Upper Saddle River, NJ: Prentice Hall.Google Scholar
Arksey, H., & Glendinning, C. (2007). Choice in the context of informal care-giving. Health & Social Care in the Community, 15, 165–175.Google ScholarPubMed
Armstrong, P., & Armstrong, H. (2004). Thinking it through: Women, work and caring in the new millennium. In Grant, K.R., Amaratunga, C., Armstrong, P., Boscoe, M., Pederson, A., & Wilson, K. (Eds.), Caring for/caring about: Women, home care and unpaid caregiving. Aurora, ON: Garamond Press.Google Scholar
Bell, J. (1996). Decision making in nursing home placement. Journal of Women and Aging, 8(1), 45–60.10.1300/J074v08n01_06CrossRefGoogle Scholar
Bryan, A., & McIntosh, J. (1996). Decision making in community nursing: An analysis of the stages of decision making as they relate to community nursing assessment practices. Journal of Advanced Nursing, 24(1), 24–30.10.1046/j.1365-2648.1996.01593.xCrossRefGoogle Scholar
Butcher, H.K., Holkup, P.A., Park, M., & Maas, M. (2001). Thematic analysis of the experience of making a decision to place a family member with Alzheimer’s disease in a special care unit. Research in Nursing & Health, 24, 470–480.10.1002/nur.10005CrossRefGoogle Scholar
Canadian Study of Health and Aging Working Group. (2000). CSHA: The incidence of dementia in Canada. Neurology, 55, 66–73.10.1212/WNL.55.1.66CrossRefGoogle Scholar
Caron, C.D., Ducharme, F., & Griffith, J. (2006). Deciding on institutionalization for a relative with dementia: The most difficult decision for caregivers. Canadian Journal on Aging, 25(2), 193–205.10.1353/cja.2006.0033CrossRefGoogle ScholarPubMed
Caron, C.D., Griffith, J., & Arcand, M. (2005). Decision making at the end of life in dementia: How family caregivers perceive their interactions with health care providers in long term care settings. Journal of Applied Gerontology, 24(3), 231–247.CrossRefGoogle Scholar
Chang, Y-P., & Schneider, J.K. (2010). Decision-making process of nursing home placement among Chinese family caregivers. Perspectives in Psychiatric Care, 46, 108–118.10.1111/j.1744-6163.2010.00246.xCrossRefGoogle ScholarPubMed
Cranswick, K., & Thomas, D. (2005). Elder care and the complexities of social networks. Canadian social trends (Catalogue No. 11-008). Ottawa, ON: Statistics Canada.Google Scholar
Davies, S., & Nolan, M. (2003). Making the best of things: Relatives experiences of decisions about care-home entry. Ageing & Society, 23, 429–450.10.1017/S0144686X03001259CrossRefGoogle Scholar
Drane, J.F. (1984). Competency to give an informed consent: A model for making clinical assessments. Journal of the American Medical Association, 252, 925–927.10.1001/jama.1984.03350070043021CrossRefGoogle Scholar
Fast, J.E., & Keating, N.C. (2001). Informal caregivers in Canada: A snapshot. Report to the Health Services Division, Health Policy and Communications Branch, Health Canada.Google Scholar
Feinberg, L.F., & Whitlatch, C.J. (1998). Family caregivers and in-home respite options: The consumer-directed versus agency-based experience. Journal of Gerontological Social Work, 30(3/4), 9–28.10.1300/J083v30n03_03CrossRefGoogle Scholar
Feinberg, F.L., & Whitlatch, C.J. (2001). Are persons with cognitive impairment able to state consistent choices? The Gerontologist, 41(3), 374–382.10.1093/geront/41.3.374CrossRefGoogle ScholarPubMed
Feinberg, L.F., & Whitlatch, C.J. (2002). Decision making for persons with cognitive impairment and their family caregivers. American Journal of Alzheimer’s Disease and Other Dementias, 17(4), 237–244.10.1177/153331750201700406CrossRefGoogle ScholarPubMed
Flegel, K.M., & MacDonald, N. (2008). Decision-making capacity in an age of control. Canadian Medical Association Journal, 178(2), 127.10.1503/cmaj.071810CrossRefGoogle Scholar
Folstein, M.F., Folstein, S.E., & McHugh, P.R. (1975). ‘Mini-Mental State’: A practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12, 189–198.10.1016/0022-3956(75)90026-6CrossRefGoogle Scholar
Forbes, S., Bern-Klug, M., & Gessert, C. (2000). End-of-life decision making for nursing home residents with dementia. Journal of Nursing Scholarship, 32(3), 251–258.10.1111/j.1547-5069.2000.00251.xCrossRefGoogle ScholarPubMed
Forbes, D.A., & Neufeld, A. (2008). Invited article: Discourse: Looming dementia care crisis: Canada needs an integrated model of continuing care now! Canadian Journal of Nursing Research, 40(1), 9–16.Google Scholar
Gaugler, J.E., Edwards, A.B., Femia, E.E., Zarit, S.H., Stephens, M.A.P., Townsend, A., et al. . (2000). Predictors of institutionalization of cognitively impaired elders: Family help and the timing of placement. The Journals of Gerontology. Series B, Psychological Sciences and Social Sciences, 55, P247–P255.10.1093/geronb/55.4.P247CrossRefGoogle ScholarPubMed
Gaugler, J.E., Leitsch, S.A., Zarit, S.H., & Pearlin, L.I. (2000). Caregiving involvement after institutionalization: Effects of preplacement stress. Research on Aging, 22, 337–359.CrossRefGoogle Scholar
Hertogh, C.M.P.M., & Ribbe, M.W. (1996). Ethical aspects of medical decision-making in demented patients. Alzheimer Disease & Associated Disorders, 10, 11–19.Google ScholarPubMed
Hirschman, K.B., Joyce, C., James, B.D., Xie, S.X., & Karlawish, J.H. (2005). Do Alzheimer’s disease patients want to participate in a treatment decision, and would their caregiver let them? The Gerontologist, 45(3), 381–388.10.1093/geront/45.3.381CrossRefGoogle Scholar
Hirschman, K., Kapo, J., & Karlawish, J. (2006). Why doesn’t a family member of a person with advanced dementia use a substituted judgment when making a decision for that person? American Journal of Geriatric Psychiatry, 14, 659–667.10.1097/01.JGP.0000203179.94036.69CrossRefGoogle ScholarPubMed
Horton-Deutsh, S., Twigg, P., & Evans, R. (2007). Health care decision making of persons with dementia. Dementia, 6(1), 105–120.CrossRefGoogle Scholar
Janofsky, J.S., McCarthy, R.J., & Folstein, M.F. (1992). The Hopkins competency assessment test: A brief method of evaluating patients’ capacity to informed consent. Hospital and Community Psychiatry, 43, 132–136.Google Scholar
Keating, N., Fast, J., Frederick, J., Cranswick, K., & Perrier, C. (1999). Eldercare in Canada: Context, content and consequences. Ottawa, ON: Statistics Canada.Google Scholar
Keene, J., Hope, T., Fairburn, C.G., & Jacoby, R. (2001). Death and dementia. International Journal of Geriatric Psychiatry, 16, 969–974.10.1002/gps.474CrossRefGoogle ScholarPubMed
Kuther, T.L. (2000). Competency to provide informed consent in older adulthood. Gerontology and Geriatrics Education, 20(1), 15–30.10.1300/J021v20n01_03CrossRefGoogle Scholar
Livingston, G., Manela, M., Livingston, D., Rait, G., Sampson, E., Bavishi, S., et al. . (2010). Making decisions for people with dementia who lack capacity: Qualitative study family carers in UK. BioMedical Journal, 341:c4184.Google ScholarPubMed
Lo, B. (1990). Assessing decision-making capacity. Law, Medicine and Health Care, 18(3), 193–201.10.1111/j.1748-720X.1990.tb00022.xCrossRefGoogle ScholarPubMed
Loeb, P. (1996). Independent living scales. San Antonio: Psychological Corporation.Google Scholar
Lofland, J., Snow, D.A., Anderson, L., & Lofland, J. (2006). Analyzing social settings: A guide to qualitative observation and analysis, 4th ed. Belmont: Wadsworth.Google Scholar
McFall, S., & Miller, B.H. (1992). Caregiver burden and nursing home admission of frail elderly persons. Journal of Gerontology, 47(2), S73–S79.10.1093/geronj/47.2.S73CrossRefGoogle ScholarPubMed
McWilliam, C.L., & Ward-Griffin, C. (2006). Implementing organizational change in health and social services. Journal of Organizational Change Management, 19(2), 119–135.10.1108/09534810610648861CrossRefGoogle Scholar
Menne, H.L., Tucke, S.S., Whitlatch, C.J., & Feinberg, L.F. (2008). Decision-making involvement scale for individuals with dementia and family caregivers. American Journal of Alzheimer’s Disease & Other Dementias, 23(1), 23–29.10.1177/1533317507308312CrossRefGoogle ScholarPubMed
Moye, J. (1996). Theoretical frameworks for competency in cognitively impaired elderly adults. Journal of Aging Studies, 10(1), 24–42.CrossRefGoogle Scholar
Moye, J., & Marson, D.C. (2007). Assessment of decision-making capacity in older adults: An emerging area of practice and research. The Journals of Gerontology. Series B, Psychological Sciences and Social Sciences, 62(1), 3–11.CrossRefGoogle ScholarPubMed
Mui, A.C. (1995). Caring for frail elderly parents: A comparison of adult sons and daughters. The Gerontologist, 35(1), 86–93.10.1093/geront/35.1.86CrossRefGoogle ScholarPubMed
Nolan, M., Davies, S., Brown, J., Keady, J., & Nolan, J. (2004). Beyond person-centred care: A new vision for gerontological nursing. Journal of Clinical Nursing, 13(3a), 45–53.CrossRefGoogle Scholar
O’Connor, D., & Purves, B. (Eds.) (2009). Decision making, personhood and dementia: Exploring the interface. London: Jessica Kingsley Press.Google Scholar
Ochroch, R. (1990). Legal and psychological competency: Issues in clinical assessment of the elderly. Forensic Reports, 3(1), 91–105.Google Scholar
Okonkwo, O.C., Griffith, H.R., Copeland, J.N., Belue, K., Lanza, S., Zamrini, E.Y., et al. . (2008). Medical decision-making capacity in mild cognitive impairment: A 3-year longitudinal study. Neurology, 71, 1474–1480.10.1212/01.wnl.0000334301.32358.48CrossRefGoogle ScholarPubMed
Ory, M.G., Yee, J.L., Tennstedt, S.L., & Schulz, R. (2000). The extent and impact of dementia care: Unique challenges experienced by family caregivers. In Schulz, R. (Ed.), Handbook of dementia caregiving: Evidence-based interventions for family caregivers. (pp. 1–32). New York: Springer Publishing Company, Inc.Google Scholar
Province of Ontario. (1992). Substitute Decisions Act. (1992), S.O. 1992. Chapter 30. Last amendment: 2009, c. 33, Sched. 18, s. 33. Accessed on October 10 2011 from http://www.e-laws.gov.on.ca/html/statutes/english/elaws_statutes_92s30_e.htm.Google Scholar
Province of Ontario. (1996). Health Care Consent Act, 1996. S.O. 1996. Chapter 2, Schedule A. Last amendment: 2010, c. 1, Sched. 9. Accessed on October 10 2011 from http://www.e-laws.gov.on.ca/html/statutes/english/elaws_statutes_96h02_e.htm.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), 1187–1195.10.1046/j.1365-2648.2000.01589.xCrossRefGoogle ScholarPubMed
Skelton, F., Kunik, M.E., Regev, T., & Naik, A.D. (2010). Determining if an older adult can make and execute decisions to live safely at home: A capacity assessment and intervention model. Archives in Gerontology and Geriatrics, 50(3), 300–305.10.1016/j.archger.2009.04.016CrossRefGoogle Scholar
Smetanin, P., Kobak, P., Briante, C., Stiff, D., Sherman, G., & Ahmad, S. (2009). Rising tide: The impact of dementia in Canada 2008 to 2038. RiskAnalytica: The Alzheimer’s Society of Canada.Google Scholar
Szinovacz, M.E., & Davey, A. (2007). Caregiving contexts: Cultural, familial, and societal implications. New York: Springer.Google Scholar
Thomas, J. (1993). Doing critical ethnography. Qualitative research methods. 26, Newbury Park, California: Sage.Q1: Please provide state name for the reference “Thomas (1993).”CrossRefGoogle Scholar
Tsuji, I., Whalen, S., & Finucane, T.E. (1995). Predictors of nursing home placement in community-based long-term care. Journal of the American Geriatrics Society, 43, 761–766.CrossRefGoogle ScholarPubMed
Wang, P., & Ennis, K. (1986). Clinical neuropsychology of intervention. Boston: Martinus Nijhoff.Google Scholar
Ward-Griffin, C., McWilliam, C., Forbes, D., Klosek, M., & Bol, N. (2007). Client-caregiver- provider relationships in home-based dementia care: A critical analysis. Alzheimer’s Society of Canada/Canadian Institutes of Health Research (Institute of Aging), Grant Contract No. R2474A13.Google Scholar
Wechsler, D. (1981). Wechsler adult intelligence scale-revised. San Antonio: Psychological Corporation.Google Scholar