Developing an Accessible Discrete Choice Survey to Identify Supportive Care Preferences of Older Adults With Dementia

As dementia progresses, older adults with dementia are often left out of care decisions. We used a human-centered design (HCD) approach to create an accessible discrete choice experiment (DCE) survey for eliciting preferences regarding supportive care from persons living with dementia (PLWD) and their care partners (CP). This article describes an HCD process for developing DCE choice tasks to elicit preferences.

We developed, refined, and prioritized attributes for a DCE survey based on findings from interviews with PLWD, CP, and providers in the Pacific Northwest (USA). User feedback informed development of the survey throughout the design process. To gain user feedback, we pilot tested a simplified DCE format and conducted think-aloud sessions to validate attributes, icons, and the DCE task format.

A list of 12 key attributes was identified from 79 interview transcripts. An iterative qualitative process was used to reduce the list to 3 attributes and finalize DCE attributes, icons, and format through think-aloud sessions with PLWD and CP (n = 7). To improve accessibility, 1 attribute (Problems with Memory and Function) was kept constant within each choice task. A fixed labeled alternative (Assisted Living) was selected to minimize cognitive load. Think-aloud testing with potential participants confirmed participant understanding of the attributes, levels, and icons. These adapted design considerations facilitated participant engagement and the ability of PLWD to weigh options involving the future.

An HCD approach facilitated the creation of an accessible, person-centered DCE survey for PLWD that promotes values clarification around supportive care transitions.