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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

  • Annika Taghizadeh Larsson (a1) and Johannes H. Österholm (a2)



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.


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.


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.


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.


Corresponding author

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:


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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, 329.
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, 487496. doi: 10.1080/13607860802607314.
Bartlett, R. and O’Connor, D. (2010). Broadening the Dementia Debate: Toward Social Citizenship. Bristol: Policy Press.
Boyle, G. (2008). The Mental Capacity Act 2005: promoting the citizenship of people with dementia? Health and Social Care in the Community, 16, 529537.
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, 3447. doi: 10.1080/02668734.2011.652976.
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, 193206.
Chang, Y. and Schneider, J. (2010). Decision-making process of nursing home placement among Chinese family caregivers. Perspectives in Psychiatric Care, 46, 108118. doi:10.1111/j.1744-6163.2010.00246.
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, 436444.
Chene, B. (2006). Dementia and residential placement: a view from the carers’ perspective. Qualitative Social Work, 5, 187215.
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, 272281. doi: 10.1177/1359105312437265.
Department for Constitutional Affairs (2007). Mental Capacity Act 2005: Code of Practice. London: The Stationery Office.
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, 197218. doi:10.1080/01621424.2012.681572.
Dwyer, S. (2005). Older people and permanent care: whose decision? British Journal of Social Work, 35, 10811092.
Elliott, B., Gessert, C. and Peden-McAlpine, C. (2009). Family decision-making in advanced dementia: narrative and ethics. Scandinavian Journal of Caring Sciences, 23, 251258. doi:10.1111/j.1471-6712.2008.00613.
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, 143150.
Finfgeld, D. L. (2003). Metasynthesis: the state of the art – So far. Qualitative Health Research, 13, 893904. doi:10.1177/1049732303253462.
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, 115.
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, 3948.
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, 254259.
Golden, M. A. (2010). Dialectical contradictions experienced when placing a spouse with dementia in a residential care facility. Qualitative Research Reports in Communication, 11, 1420.
Goldsmith, M. (1996). Hearing the voice of people with dementia: opportunities and obstacles. London: Jessica Kingsley.
Herissone-Kelly, P. P. (2010). Capacity and consent in England and Wales: the Mental Capacity Act under scrutiny. Cambridge Quarterly of Healthcare Ethics, 19, 344352. doi:10.1017/S0963180110000125.
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), 93101. doi:
Jaffe, D. and Wellin, C. (2008). June's troubled transition: adjustment to residential care for older adults with dementia. Care Management Journals, 9, 128137.
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, 345353.
Kitwood, T. (1997). Dementia Reconsidered – The Person Comes First. Buckingham: Open University Press.
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. 3777). Malmö: Gleerups.
Knapp, M. et al. (2007). Dementia UK: The Full Report. London: Alzheimer’s Society.
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, 143151.
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:
Lopez, R. P. and Guarino, A. J. (2011). Uncertainty and decision making for residents with dementia. Clinical Nursing Research, 20, 228240. doi: 10.1177/1054773811405521.
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, 12291246. doi:10.1093/bjsw/bcq021.
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, 7378. doi: 10.1258/jhsrp.2007.007084.
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, 531540.
Saini, M. and Shlonsky, A. (2012). Systematic Synthesis of Qualitative Research. New York: Oxford University Press.
Schneider, J. et al. (2002). Formal and informal care for people with dementia: factors associated with service receipt. Aging and Mental Health, 6, 255265.
SFS 1949:381. Föräldrabalk [Act on the Children and Parents Code]. Stockholm: Justitiedepartementet.
Sherwin, S. and Winsby, M. (2011). A relational perspective on autonomy for older adults residing in nursing homes. Health Expectations, 14, 182190.
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.
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, 2834.
St-Amant, O. et al. (2012). Making care decisions in home-based dementia care: why context matters. Canadian Journal on Aging, 31, 423434. doi:10.1017/S0714980812000396.
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, 2745. doi:10.1177/1054773805282356.
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, 479502.
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, 2136.
Wilkinson, H. (2001). Empowerment and decision-making for people with dementia: the use of legal interventions in Scotland. Aging & Mental Health, 5, 322328
Wolfs, C. et al. (2012). Rational decision-making about treatment and care in dementia: a contradiction in terms? Patient Education & Counseling, 87, 4348.


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