Supporting decision making among people living with dementia: Developing a DCE tool

Background: Persons living with dementia (PLWD) face many decisions about transitioning to more supportive care as their disease progresses, but are often left out of the decision-making process. The Decision-Making in Alzheimer’s Research (DMAR) project is developing a tool, informed by stakeholder input, that uses images, story-telling, and discrete choice experiments (DCEs) to unpack the preferences of PLWD about transitions in supportive care and facilitate their inclusion in the decision-making process. This study describes the development and design of the DMAR tool. Method: We conducted in-depth interviews between September 2020 and December 2021 with 24 PLWD, 37 caregivers, and 18 direct care staff or providers to understand decisions that PLWD encounter as they transition to supportive care, and the related decision-making factors. We recorded, transcribed, coded, and analyzed interviews for key themes and factors. We then used heat maps to determine the four key factors for making decisions about obtaining more supportive care. Result: Decisions and roles in decision-making differ depending on the stage of dementia. However, even persons with very early dementia had difficulty discussing plans regarding more supportive care. Early decision-making centered on obtaining support around instrumental activities of daily living. Decisions to bring more supportive care into the home or seek supportive care outside the home were mentioned primarily by caregivers and staff members. Overall, the four most commonly mentioned factors influencing decision-making were level of function, quality of life, out of pocket costs, and amount of supportive care. Conclusion: These four factors will be incorporated into a DCE tool to identify the relative importance of identified factors in making decisions regarding transitions to more supportive care. In this roundtable, we will further discuss plans to develop an electronically administered DCE tool to track the consistency of preferences of PLWD and their caregivers over time. We will also describe challenges encountered when eliciting preferences of PLWD, the role of technology in decision-making, and creative methods, such as story-telling and images, to enhance discussions with PLWD regarding supportive care.