Facilitating Supportive Care Decision-Making for Persons with Dementia: Qualitative Insights from Health Care...

Persons living with dementia (PLWDs) and their care partners (CPs) often face decisions about future supportive care transitions.

We conducted in-depth interviews with a purposive sample of healthcare professionals (HCPs) experienced in supporting PLWDs and CPs with transitions in care. Interviews were audio recorded, transcribed, and coded using a hybrid deductive-inductive approach. We used thematic analysis to identify key themes regarding factors influencing supportive care decisions and planning and decision-making facilitators used by HCPs.

Qualitative analysis of 18 interviews revealed four themes: (1) difficulty thinking about the future; (2) increasing CP burden with disease progression; (3) uncertainty about costs and resources; and (4) the impact of cultural values. HCP strategies to support decision-making included building trust; timely education; and facilitating access to resources. HCP input suggested the importance of an accessible decision tool, sensitive to sociocultural values, and administered by trusted experts.

We identified themes to inform development of a decision tool to support PLWDs and CPs supportive care transitions. HCPs highlighted the importance of early access to decision-making tools to facilitate dementia care planning and education.