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Agency in dementia care: systematic review and meta-ethnography

  • Alessandro Bosco (a1), Justine Schneider (a2), Donna Maria Coleston-Shields (a1), Kaanthan Jawahar (a1), Paul Higgs (a3) and Martin Orrell (a1)...



Dementia often limits the agency of the person to such an extent that there is need for external support in making daily life decisions. This support is usually provided by family members who are sometimes legally empowered to engage in decision-making on behalf of the person for whom they care. However, such family carers receive little or no information on how to best provide support when there is a lack of capacity. This may have an impact on the agency of the person with dementia. This review explores the experience of agency in people living with dementia.


A systematic search was conducted on IBSS, MedLine, PsychINFO, EMBASE, and CINAHL. Two independent researchers screened the studies and conducted the quality appraisal. We used meta-ethnography for data analysis. As part of the synthesis, we identified behavioral mechanisms underlying the process of decision-making and looked at how the support of carers comes into play in making deliberate choices.


The meta-ethnography involved 20 studies. Three levels of third-order constructs were identified, each describing a decision-making pathway and reflecting the degree of autonomy of the person with dementia: autonomous decision-making, shared decision-making, and pseudo decision-making. Findings highlight those inter-relational processes that promote or negatively impact on the agency of people with dementia.


Our review will provide health and social care personnel with an understanding of the role of the carer in the decision-making process, and therefore which mechanisms need to be promoted or discouraged through training.


Corresponding author

Correspondence should be addressed to: Alessandro Bosco, Room A10, Institute of Mental Health, Innovation Park, University of Nottingham, Triumph Road, Nottingham NG7 2TU, UK. Phone: (+44) 7453512212. Email:


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Adler, G. (2010). Driving decision-making in older adults with dementia. Dementia, 9, 4560. doi: 10.1177/1471301209350289.
Alzheimer’s Disease International (ADI) (2016). World Alzheimer Report 2016: Improving Healthcare for People Living with Dementia, Coverage, Quality and Costs now and in the Future. London: Alzheimer’s Disease International (ADI).
Berger, P. L. and Luckmann, T. (1991). The Social Construction of Reality: A Treatise in the Sociology of Knowledge (No. 10). London: Penguin.
Berry, B., Apesoa-Varano, E. C. and Gomez, Y. (2015). How family members manage risk around functional decline: the autonomy management process in households facing dementia. Social Science & Medicine, 130, 107114. doi: 10.1016/j.socscimed.2015.02.014.
Boyle, G. (2013a). ‘She’s usually quicker than the calculator’: financial management and decision-making in couples living with dementia. Health and Social Care in the Community, 21, 554562. doi: 10.1111/hsc.12044.
Boyle, G. (2013b). Facilitating decision-making by people with dementia: is spousal support gendered? Journal of Social Welfare and Family Law, 35, 227243. doi: 10.1080/09649069.2013.800290.
Boyle, G. (2014a). ‘Can’t cook, won’t cook’: men’s involvement in cooking when their wives develop dementia. Journal of Gender Studies, 23, 336350. doi: 10.1080/09589236.2013.792728.
Boyle, G. (2014b). Recognising the agency of people with dementia. Disability & Society, 29, 11301144. doi: 10.1080/09687599.2014.910108.
Brand-Gruwel, S., Wopereis, I. and Walraven, A. (2009). A descriptive model of information problem solving while using internet. Computers & Education, 53, 12071217. doi: 10.1016/j.compedu.2009.06.004.
Cohen, J. (1960). A coefficient of agreement for nominal scales. Educational and Psychological Measurement, 20, 3746. doi: 10.1177/001316446002000104.
Couture, M., Ducharme, F. and Lamontagne, J. (2012). The role of health care professionals in the decision-making process of family caregivers regarding placement of a cognitively impaired elderly relative. Home Health Care Management & Practice, 24, 283291. doi: 10.1177/1084822312442675.
Dening, K. H., King, M., Jones, L. and Sampson, E. L. (2017). Healthcare decision-making: past present and future, in light of a diagnosis of dementia. International Journal of Palliative Nursing, 23, 411. doi: 10.12968/ijpn.2017.23.1.4.
Department of Health (2005). Mental Capacity Act 2005: Code of Practice. London: The Stationery Office.
Dickinson, C., Bamford, C., Exley, C., Emmett, C., Hughes, J. and Robinson, L. (2013). Planning for tomorrow whilst living for today: the views of people with dementia and their families on advance care planning. International Psychogeriatrics, 25, 20112021. doi: 10.1017/S1041610213001531.
Fetherstonhaugh, D., McAuliffe, L., Bauer, M. and Shanley, C. (2016). Decision-making on behalf of people living with dementia: how do surrogates decision-makers decide? Journal of Medical Ethics, medethics-2015.
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. doi: 10.1016/j.jaging.2012.12.007.
Giddens, A. (1986). The Constitution of Society: Outline of the Theory of Structuration (Vol. 349). Berkeley, CA: University of California Press.
Gilleard, C. and Higgs, P. (2010). Aging without agency: theorizing the fourth age. Aging & Mental Health, 14, 121128. doi: 10.1080/13607860903228762.
Gimpel, H. (2008). Cognitive biases in negotiation processes. In Negotiation, Auctions, and Market Engineering (pp. 213226). Berlin, Heidelberg: Springer.
Groen-van de Ven, L. et al. (2017). Decision trajectories in dementia care networks: decisions and related key events. Research on Aging, 39, 10391071. doi: 10.1177/0164027516656741.
Hegde, S. and Ellajosyula, R. (2016). Capacity issues and decision-making in dementia. Annals of Indian Academy of Neurology, 19, 34. doi: 10.4103/0972-2327.192890.
Higgs, P. and Gilleard, C. (2015). Rethinking Old Age: Theorising the Fourth Age. London: Palgrave Macmillan.
Higgs, P. and Gilleard, C. (2016). Interrogating personhood and dementia. Aging and Mental Health, 20, 773780.
Hirschman, K. B., Xie, S. X., Feudtner, C. and Karlawish, J. H. (2004). How does an Alzheimer’s disease patient’s role in medical decision making change over time? Journal of Geriatric Psychiatry and Neurology, 17, 5560. doi: 10.1177/0891988704264540.
Juárez-Cedillo, T., Jarillo-Soto, E. C. and Rosas-Carrasco, O. (2014). Social representation of dementia and its influence on the search for early care by family member caregivers. American Journal of Alzheimer’s Disease & Other Dementias, 29, 344353. doi: 10.1177/1533317513517041.
Jones, P. H. (1997). A preliminary model of organizational complexity: optimizing chaos in organizations. Retrieved May 5, 2009, from
Kristensen, H. and Gärlinga, T. (1997). Adoption of cognitive reference points in negotiations. Acta Psychologica, 97, 277288. doi: 10.1016/S0001-6918(97)00033-4.
Landis, J. R. and Koch, G. G. (1977). The measurement of observer agreement for categorical data. Biometrics, 33, 159–74. doi: 10.2307/2529310.
Livingston, G. et al. (2010). Making decisions for people with dementia who lack capacity: qualitative study of family carers in UK. BMJ, 341, c4184. doi: 10.1136/bmj.c4184.
Lonergan, B. (2000). Insight: A Study of Human Understanding. Toronto, Canada: University of Toronto Press.
MacQuarrie, C. R. (2005). Experiences in early stage Alzheimer’s disease: understanding the paradox of acceptance and denial. Aging & Mental Health, 9, 430441. doi: 10.1080/13607860500142853.
Mental Capacity Act (2005). Code of Practice. Department for Constitutional Affairs. London: TSO.
Moher, D., Liberati, A., Tetzlaff, J. and Altman, D. G. (2009). Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. British Medical Journal, 339, b25b2535. doi: 10.1136/bmj.b2535.
Morgan, L. A., Eckert, J. K., Piggee, T. and Frankowski, A. C. (2006). Two lives in transition: agency and context for assisted living residents. Journal of Aging Studies, 20, 123132. doi: 10.1016/j.jaging.2005.07.004.
Noblit, G. and Hare, R. (1988). Meta-Ethnography: Synthesising Qualitative Studies. Newbury Park, CA: Sage Publications.
NVivo (2012). Qualitative Data Analysis Software. Melbourne, Australia: QSR International Pty Ltd.
Prinsloo, M. and Barrett, P. (2013). Cognition: theory, measurement, implications. Integral Leadership Review,
Sackett, D., Richardson, W. S., Rosenburg, W. and Haynes, R. B. (1997). How to Practice and Teach Evidence Based Medicine. London: Churchill Livingstone.
Sampson, M. S. and Clark, A. (2016). ‘Deferred or chickened out?’ Decision making among male carers of people with dementia. Dementia, 15, 16051621. doi: 10.1177/1471301214566663.
Samsi, K. and Manthorpe, J. (2013). Everyday decision-making in dementia: findings from a longitudinal interview study of people with dementia and family carers. International Psychogeriatrics, 25, 949961. doi: 10.1017/S1041610213000306.
Schütz, A. (1962). Collected Papers 1. The Hague, Netherlands: Martinus Nijhoff.
Smebye, K. L., 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.
St-Amant, O. et al. (2012). Making care decisions in home-based dementia care: why context matters. Canadian Journal of Aging, 31, 423434. doi: 10.1017/S0714980812000396.
United Nations (2006). Convention on the rights of persons with disabilities and optional protocol.
White, E. B. and Montgomery, P. (2014). Electronic tracking for people with dementia: an exploratory study of the ethical issues experienced by carers in making decisions about usage. Dementia, 13, 216232. doi: 10.1177/1471301212460445.


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Agency in dementia care: systematic review and meta-ethnography

  • Alessandro Bosco (a1), Justine Schneider (a2), Donna Maria Coleston-Shields (a1), Kaanthan Jawahar (a1), Paul Higgs (a3) and Martin Orrell (a1)...


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