THE CHALLENGES OF SHARED DECISION-MAKING IN DEMENTIA CARE NETWORKS

• Published in: Innovation in aging Vol. 1; no. suppl_1; p. 1105
• Main Authors: Groen - van de Ven, L., Smits, C., Span, M., Jukema, J.S., Coppoolse, K., de Lange, J., Eefsting, J., Vernooij-Dassen, M.
• Format: Journal Article
• Language: English
• Published: US Oxford University Press 01.07.2017
• Subjects: Abstracts
• ISSN: 2399-5300; 2399-5300
• DOI: 10.1093/geroni/igx004.4048

Background People with dementia want to be involved in the many decisions they have to make over time in order to adjust care to their values and preferences. Involving informal caregivers in decision-making can promote autonomy for people with dementia by using their extant capacities. However, informal caregivers have their own interests in the decisions made. Our aim was to describe the challenges of shared decision-making in dementia care networks. Methods Our study involves a multi-perspective qualitative study using face-to-face interviews with 113 respondents in 23 care networks consisting of 23 people with dementia, 44 of their informal caregivers, and 46 of their professional caregivers. The interview guide addressed the decision topics, the decision-making participants, and their contributions to the decision-making. We used content analysis to delineate categories and themes. Results The three themes that emerged describe the challenges of shared decision-making for dementia care networks: (1) adapting to a situation of diminishing independence, including shifting roles in the decision-making; (2) tensions in network interactions, resulting from different perspectives and interests and requiring agreement about what constitutes a problem in the situation; and (3) timing decisions well. Conclusion The challenges described have consequences for a shared decision-making approach in dementia care networks. Such an approach should (1) be flexible regarding the changing capabilities of the person with dementia to preserve his or her autonomy; (2) work towards a shared view about what constitutes a problem in the situation; and (3) be adjusted to the decision-making pace of the care network.