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How are decisions on care services for people with dementia made and experienced? A systematic review and qualitative synthesis of recent empirical findings

Published online by Cambridge University Press:  15 July 2014

Annika Taghizadeh Larsson  and
Johannes H. Österholm
Annika Taghizadeh Larsson*
Affiliation:
Department of Social and Welfare Studies, National Institute for the Study of Ageing and Later Life [NISAL] and Center for Dementia Research [CEDER], Linköping University, Norrköping, Sweden
Johannes H. Österholm
Affiliation:
Department of Medical and Health Sciences, Division of Health and Society and Center for Dementia Research [CEDER], Linköping University, Linköping, Sweden
*
Correspondence should be addressed to: Annika Taghizadeh Larsson, PhD, Department of Social and Welfare Studies, National Institute for the Study of Ageing and Later Life [NISAL] and Center for Dementia Research [CEDER], Linköping University, 601 74 Norrköping, Sweden. Phone: +46(0)11-363407. Email: annika.t.larsson@liu.se.
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Abstract

Background:

During recent decades, there has been a growing recognition that people cannot be assumed incapable of making decisions about their own care solely on the basis of a dementia diagnosis and international agreements and legislative changes have strengthened the formal right for people with dementia to participate in decisions on care services. This raises important questions about how these decisions are currently made and experienced in practice. In this review, we address this question and highlight directions for further research.

Methods:

We searched CINAHL, PsycINFO, ASSIA, Social Services Abstracts, Science Direct, Academic Search Premier, and PubMed. Twenty-four pertinent articles were identified, all representing qualitative studies. Relevant findings were extracted and synthesized along dimensions of involvement of the person with dementia in decisions on care services, using an integrative approach to qualitative synthesis.

Results:

We identified three overarching ways in which people with dementia are involved, primarily, in the informal part of a process of decisions: excluded, prior preferences taken into account, and current preferences respected. Several (10) articles seemed to be based on the assumption that decisions on care services are invariably and solely made within the family and without participation of the person with dementia.

Conclusions:

The review emphasizes the need for more updated research about international debates and agreements concerning capabilities and rights of people with dementia and about the (potential) formal contexts of care decisions in the country concerned. This, we argue, is vital for future knowledge production in the area.

Keywords

dementiaaged careAlzheimer's disease (AD)carersnursing homes
Type
Review Article
Information
International Psychogeriatrics , Volume 26 , Issue 11 , November 2014 , pp. 1849 - 1862
Copyright
Copyright © International Psychogeriatric Association 2014 

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References

Adams, K. B. (2006). The transition to caregiving: the experience of family members embarking on the dementia caregiving career. Journal of Gerontological Social Work, 47, 3–29.CrossRefGoogle ScholarPubMed
Aminzadeh, F., Dalziel, W. B., Molnar, F. J. and Garcia, L. J. (2009). Symbolic meaning of relocation to a residential care facility for persons with dementia. Aging & Mental Health, 13, 487–496. doi: 10.1080/13607860802607314.CrossRefGoogle ScholarPubMed
Bartlett, R. and O’Connor, D. (2010). Broadening the Dementia Debate: Toward Social Citizenship. Bristol: Policy Press.Google Scholar
Boyle, G. (2008). The Mental Capacity Act 2005: promoting the citizenship of people with dementia? Health and Social Care in the Community, 16, 529–537.CrossRefGoogle ScholarPubMed
Cairns, M. (2012). In sickness and in health: an exploration of some of the unconscious processes involved in the decision by family caregivers to place a family member with dementia in residential care. Psychoanalytic Psychotherapy, 26, 34–47. doi: 10.1080/02668734.2011.652976.CrossRefGoogle Scholar
Caron, C., Ducharme, F. and Griffith, J. (2006). Deciding on institutionalization for a relative with dementia: the most difficult decision for caregivers. Canadian Journal on Aging, 25, 193–206.CrossRefGoogle ScholarPubMed
Chang, Y. and Schneider, J. (2010). Decision-making process of nursing home placement among Chinese family caregivers. Perspectives in Psychiatric Care, 46, 108–118. doi:10.1111/j.1744-6163.2010.00246.CrossRefGoogle ScholarPubMed
Chang, Y., Schneider, J. and Sessanna, L. (2011). Decisional conflict among Chinese family caregivers regarding nursing home placement of older adults with dementia. Journal of Aging Studies, 25, 436–444.CrossRefGoogle Scholar
Chene, B. (2006). Dementia and residential placement: a view from the carers’ perspective. Qualitative Social Work, 5, 187–215.CrossRefGoogle Scholar
Chrisp, T., Tabberer, S. and Thomas, B. (2013). Bounded autonomy in deciding to seek medical help: carer role, the sick role and the case of dementia. Journal of Health Psychology, 18, 272–281. doi: 10.1177/1359105312437265.CrossRefGoogle ScholarPubMed
Department for Constitutional Affairs (2007). Mental Capacity Act 2005: Code of Practice. London: The Stationery Office.Google Scholar
Ducharme, F., Couture, M. and Lamontagne, J. (2012). Decision-making process of family caregivers regarding placement of a cognitively impaired elderly relative. Home Health Care Services Quarterly, 31, 197–218. doi:10.1080/01621424.2012.681572.CrossRefGoogle ScholarPubMed
Dwyer, S. (2005). Older people and permanent care: whose decision? British Journal of Social Work, 35, 1081–1092.CrossRefGoogle Scholar
Elliott, B., Gessert, C. and Peden-McAlpine, C. (2009). Family decision-making in advanced dementia: narrative and ethics. Scandinavian Journal of Caring Sciences, 23, 251–258. doi:10.1111/j.1471-6712.2008.00613.CrossRefGoogle ScholarPubMed
Fetherstonhaugh, D., Tarzia, L. and Nay, R. (2013). Being central to decision making means I am still here! The essence of decision making for people with dementia. Journal of Aging Studies, 27, 143–150.CrossRefGoogle ScholarPubMed
Finfgeld, D. L. (2003). Metasynthesis: the state of the art – So far. Qualitative Health Research, 13, 893–904. doi:10.1177/1049732303253462.CrossRefGoogle ScholarPubMed
Forbes, D. A. et al. (2012). Knowledge exchange throughout the dementia care journey by Canadian rural community-based health care practitioners, persons with dementia, and their care partners: an interpretive descriptive study. Rural & Remote Health, 12, 1–15.Google ScholarPubMed
Garity, J. (2006). Caring for a family member with Alzheimer's disease: coping with caregiver burden post-nursing home placement. Journal of Gerontological Nursing, 32, 39–48.Google ScholarPubMed
Givens, J., Lopez, R., Mazor, K. and Mitchell, S. (2012). Sources of stress for family members of nursing home residents with advanced dementia. Alzheimer Disease & Associated Disorders, 26, 254–259.CrossRefGoogle ScholarPubMed
Golden, M. A. (2010). Dialectical contradictions experienced when placing a spouse with dementia in a residential care facility. Qualitative Research Reports in Communication, 11, 14–20.CrossRefGoogle Scholar
Goldsmith, M. (1996). Hearing the voice of people with dementia: opportunities and obstacles. London: Jessica Kingsley.Google Scholar
Herissone-Kelly, P. P. (2010). Capacity and consent in England and Wales: the Mental Capacity Act under scrutiny. Cambridge Quarterly of Healthcare Ethics, 19, 344–352. doi:10.1017/S0963180110000125.CrossRefGoogle ScholarPubMed
Horttana, B. M., Fahlström, G., & Ahlström, G. (2011). Experiences of relocation in dementia care from the perspective of six care workers. International Journal of Older People Nursing, 6 (2), 93–101. doi:http://dx.doi.org/10.1111/j.1748-3743.2010.00246.x.CrossRefGoogle ScholarPubMed
Jaffe, D. and Wellin, C. (2008). June's troubled transition: adjustment to residential care for older adults with dementia. Care Management Journals, 9, 128–137.CrossRefGoogle ScholarPubMed
Keady, J., Ashcroft-Simpson, S., Halligan, K. and Williams, S. (2007). Admiral nursing and the family care of a parent with dementia: using autobiographical narrative as grounding for negotiated clinical practice and decision-making. Scandinavian Journal of Caring Sciences, 21, 345–353.CrossRefGoogle ScholarPubMed
Kitwood, T. (1997). Dementia Reconsidered – The Person Comes First. Buckingham: Open University Press.Google Scholar
Klemme Nielsen, M. (2012). Laglöst land [A lawless area]. In Broström, L. and Johansson, M. (eds.), Ställföreträdarskap i Vård och Omsorg [Deputyship in Health and Social Care] (pp. 37–77). Malmö: Gleerups.Google Scholar
Knapp, M. et al. (2007). Dementia UK: The Full Report. London: Alzheimer’s Society.Google Scholar
Kwon, S.-H. and Tae, Y.-S. (2012). Nursing home placement: the process of decision making and adaptation among adult children caregivers of demented parents in Korea. Asian Nursing Research, 6, 143–151.CrossRefGoogle ScholarPubMed
Livingston, G. et al. (2010). Making decisions for people with dementia who lack capacity: qualitative study of family carers in UK. British Medical Journal, 341, c4184. doi: http://dx.doi.org/10.1136/bmj.c4184.CrossRefGoogle ScholarPubMed
Lopez, R. P. and Guarino, A. J. (2011). Uncertainty and decision making for residents with dementia. Clinical Nursing Research, 20, 228–240. doi: 10.1177/1054773811405521.CrossRefGoogle ScholarPubMed
McDonald, A. A. (2010). The impact of the 2005 Mental Capacity Act on social workers’ decision making and approaches to the assessment of risk. British Journal of Social Work, 40, 1229–1246. doi:10.1093/bjsw/bcq021.CrossRefGoogle Scholar
Luke, L., Redley, M., Clare, I. and Holland, A. (2008). Hospital clinicians’ attitudes towards a statutory advocacy service for patients lacking mental capacity: implications for implementation. Journal of Health Services Research & Policy, 13, 73–78. doi: 10.1258/jhsrp.2007.007084.CrossRefGoogle ScholarPubMed
Mak, W. and Sörensen, S. (2012). Trajectories of preparation for future care among first-degree relatives of Alzheimer's disease patients: an ancillary study of ADAPT. Gerontologist, 52, 531–540.CrossRefGoogle ScholarPubMed
Saini, M. and Shlonsky, A. (2012). Systematic Synthesis of Qualitative Research. New York: Oxford University Press.CrossRefGoogle Scholar
Schneider, J. et al. (2002). Formal and informal care for people with dementia: factors associated with service receipt. Aging and Mental Health, 6, 255–265.CrossRefGoogle ScholarPubMed
SFS 1949:381. Föräldrabalk [Act on the Children and Parents Code]. Stockholm: Justitiedepartementet.Google Scholar
Sherwin, S. and Winsby, M. (2011). A relational perspective on autonomy for older adults residing in nursing homes. Health Expectations, 14, 182–190.CrossRefGoogle ScholarPubMed
Smebye, K., Kirkevold, M. and Engedal, K. (2012). How do persons with dementia participate in decision making related to health and daily care? A multi-case study. BMC Health Services Research, 12, 241. doi:10.1186/1472-6963-12-241.CrossRefGoogle Scholar
Smith, A. and Sullivan, D. (2012). A new ball game: the united conventions on the rights of persons with disabilities and assumptions in care for people with dementia. Journal of Law and Medicine, 20, 28–34.Google ScholarPubMed
St-Amant, O. et al. (2012). Making care decisions in home-based dementia care: why context matters. Canadian Journal on Aging, 31, 423–434. doi:10.1017/S0714980812000396.CrossRefGoogle ScholarPubMed
Strang, V. R., Koop, P. M., Dupuis-Blanchard, S., Nordstrom, M. and Thompson, B. (2006). Family caregivers and transition to long-term care. Clinical Nursing Research, 15, 27–45. doi:10.1177/1054773805282356.CrossRefGoogle ScholarPubMed
Tyrrell, J., Genin, N. and Myslinski, M. (2006). Freedom of choice and decision-making in health and social care: views of older patients with early-stage dementia and their carers. Dementia, 5, 479–502.CrossRefGoogle Scholar
Weber, J. and Bailey, K. (2005). Using focus groups to assess pre- and post-placement needs for caregivers of individuals with Alzheimer's disease. Journal of Social Work in Long-Term Care, 3, 21–36.CrossRefGoogle Scholar
Wilkinson, H. (2001). Empowerment and decision-making for people with dementia: the use of legal interventions in Scotland. Aging & Mental Health, 5, 322–328 CrossRefGoogle ScholarPubMed
Wolfs, C. et al. (2012). Rational decision-making about treatment and care in dementia: a contradiction in terms? Patient Education & Counseling, 87, 43–48.CrossRefGoogle ScholarPubMed
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