Skip to main content Accessibility help

The challenges of shared decision making in dementia care networks

  • Leontine Groen-van de Ven (a1), Carolien Smits (a1), Marijke Span (a1), Jan Jukema (a1), Krista Coppoolse (a2), Jacomine de Lange (a2), Jan Eefsting (a3) (a4) and Myrra Vernooij-Dassen (a5) (a6)...



Decision making is an important part of managing one's life with dementia. Shared decision making is the preferred way of involving people in decisions. Our study aimed to describe the challenges of shared decision making in dementia care networks.


A multi-perspective qualitative study using face-to-face interviews with 113 respondents in 23 care networks in the Netherlands consisting of 23 people with dementia, 44 of their informal caregivers, and 46 of their professional caregivers. The interview guide addressed the decision topics, who were involved in the decision making and their contributions to the decision making. We used content analysis to delineate categories and themes.


The themes and categories that emerged are: (1) adapting to a situation of diminishing independence, which includes the continuous changes in the care network, resulting in shifting decision-making roles and the need for anticipating future decisions; and (2) tensions in network interactions which result from different perspectives and interests and which require reaching agreement about what constitutes a problem by exchanging information in the care network.


The challenges in dementia care networks relate to all dimensions of social health. They have implications for a model of shared decision making in dementia care networks. Such a model requires flexibility regarding changing capabilities to preserve the autonomy of the person with dementia. It needs working towards a shared view about what constitutes a problem in the situation. It asks for professionals to advocate for the involvement of people with dementia by helping them participate in ways that strengthen their remaining capacities.


Corresponding author

Correspondence should be addressed to: Leontine Groen-van de Ven, MSc, PhD Candidate, Research Group Innovating with Older Adults, Centre of Expertise in Health Care and Social Work, Windesheim University of Applied Sciences, Campus 2-6, F119, P.O. Box 10090, 8000 GB Zwolle, the Netherlands. Email:


Hide All
Blanc, X. et al. (2014). Publication trends of shared decision making in 15 high impact medical journals: a full-text review with bibliometric analysis. BMC Medical Informatics and Decision Making, 14, 19. doi: 10.1186/1472-6947-14-71.
Boyle, G. (2014). Recognising the agency of people with dementia. Disability & Society, 29, 11301144. doi: 10.1080/09687599.2014.910108.
Corbin, J. and Strauss, A. (1990). Grounded theory research: procedures, canons, and evaluative criteria. Qualitative Sociology, 13, 322
Coyne, I. T. (1997). Sampling in qualitative research. Purposeful and theoretical sampling; merging or clear bounderies? Journal of Advanced Nursing, 26, 623630
Creswell, J. (1998). Qualitative Inquiry and Research Design: Choosing Among Five Traditions. Thousand Oaks: Sage.
Elo, S. and Kyngas, H. (2008). The qualitative content analysis process. Journal of Advanced Nursing, 62, 107115. doi: 10.1111/j.1365-2648.2007.04569.x.
Entwistle, V. and Watt, I. S. (2006). Patient involvement in treatment decision-making: the case for a broader conceptual framework. Patient Education and Counseling, 63, 268278. doi: 10.1016/j.pec.2006.05.002.
Epstein, R. M. and Gramling, R. E. (2013). What is shared in shared decision making? Complex decisions when the evidence is unclear. Medical Care Research and Review, 70, 94S–112S. doi: 10.1177/1077558712459216.
Feinberg, L. F. and Whitlatch, C. J. (2001). Are persons with cognitive impairment able to state consistent choice? The Gerontologist, 41, 374382
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.
Groen-van de Ven, L. et al. (2016). Decision trajectories in dementia care networks: decisions and related key-events. Research on Aging, 133. doi: 10.1177/0164027516656741.
Hamann, J. et al. (2011). Patient participation in medical and social decisions in Alzheimer's disease. Journal of the American Geriatrics Society, 59, 20452052. doi: 10.1111/j.1532-5415.2011.03661.x.
Huber, M. et al. (2011). How should we define health? British Medical Journal, 343, d4163d4163. doi: 10.1136/bmj.d4163.
Johnson, J. K., Barach, P. and Vernooij-Dassen, M. (2012). Conducting a multicentre and multinational qualitative study on patient transitions. BMJ Quality & Safety, 21 (Suppl. 1), i22i28. doi: 10.1136/bmjqs-2012-001197.
Kendall, M. et al. (2009). Use of multiperspective qualitative interviews to understand patients’ and carers’ beliefs, experiences, and needs. British Medical Journal, 399, 196199. doi: 10.1136/bmj.b3702.
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.
Meulenbroek, O. et al. (2010). Informed consent in dementia research. Legislation, theoretical concepts and how to assess capacity to consent. European Geriatric Medicine, 1, 5863. doi: 10.1016/j.eurger.2010.01.009.
Miller, L. M., Whitlatch, C. J. and Lyons, K. S. (2014). Shared decision-making in dementia: a review of patient and family carer involvement. Dementia. Epublished ahead of print, doi: 10.1177/1471301214555542.
Montori, V. M., Gafni, A. and Charles, C. (2006). A shared treatment decision-making approach between patients with chronic conditions and their clinicians: the case of diabetes. Health Expectations, 9, 2536. doi: 10.1111/j.1369-7625.2006.00359.x.
Murphy, K., Jordan, F., Hunter, A., Cooney, A. and Casey, D. (2015). Articulating the strategies for maximising the inclusion of people with dementia in qualitative research studies. Dementia, 14, 800824. doi: 10.1177/1471301213512489.
Nygård, L. (2006). How can we get access to the experiences of people with dementia? Scandinavian Journal of Occupational Therapy, 13, 101112. doi: 10.1080/11038120600723190.
Peisah, D., Sorinmade, O. A., Mitchell, L. and Hertogh, C. M. P. M. (2013). Decisional capacity: toward an inclusionary approach. International Psychogeriatrics, 25, 15711579. doi: 10.1017/S1041610213001014.
Samsi, K. and Manthorpe, J. (2013). Everyday decision-making in dementia: findings from a longitudinal interviewstudy of people with dementia and family carers. International Psychogeriatrics, 25, 949961. doi: 10.1017/S1041610213000306.
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, 123. doi: 10.1186/1472-6963-12-241.
Span, M. et al. (2015). An interactive web tool for facilitating shared decision-making in dementia care networks: a field study. Frontiers in Aging Neurosciences, 7, 128. doi: 10.3389/fnagi.2015.00128 10.3389/fnagi.2015.00128.
St-Amant, O. et al. (2014). Making care decisions in home-based dementia care: why context matters. Canadian Journal on Aging, 31, 423434. doi: 10.1017/S0714980812000396.
Stacey, D., Légaré, F., Pouliot, S., Kryworuchko, J. and Dunn, S. (2010). Shared decision making models to inform an interprofessional perspective on decision making: a theory analysis. Patient Education and Counseling, 80, 164172. doi: 10.1016/j.pec.2009.10.015.
Su, C. T., McMahan, R. D., Williams, B. A., Sharma, R. K. and Sudore, R. L. (2014). Family matters : effects of birth order, culture, and family dynamics on surrogate decision-making. Journal of the American Geriatrics Society, 62, 175182. 10.1111/jgs.12610.
Vernooij-Dassen, M. and Jeon, Y.-H. (2016). Social health and dementia: the power of human capabilities. International Psychogeriatrics, 28, 701703. doi: 10.1017/S1041610216000260.
Wolfs, C. A. et al. (2012). Rational decision-making about treatment and care in dementia: a contradiction in terms? Patient Education and Counseling, 87, 4348. doi: 10.1016/j.pec.2011.07.023.



Altmetric attention score

Full text views

Total number of HTML views: 0
Total number of PDF views: 0 *
Loading metrics...

Abstract views

Total abstract views: 0 *
Loading metrics...

* Views captured on Cambridge Core between <date>. This data will be updated every 24 hours.

Usage data cannot currently be displayed