Dementia Care Research and Psychosocial Factors

Area of Science:

• Neuroscience
• Gerontology
• Public Health

Background:

• Prioritizing needs of people living with Alzheimer's disease (PLWAD) and care partners is essential for evaluating meaningful treatment benefits.
• Previous research identified key concepts important across the Alzheimer's disease (AD) spectrum.
• Assessing concept priorities in a diverse population will enhance understanding of the lived experience of AD and guide patient-centric endpoints.

Purpose of the Study:

• To assess and contextualize the priorities of people living with or at risk for AD and their care partners.
• To understand how concept priorities differ across various AD groups and disease severity.
• To inform the development of patient-centric study endpoints in AD research.

Main Methods:

• An ongoing, cross-sectional, survey-based study including approximately 600 adults with or at risk for AD and care partners.
• Interim analysis of a quantitative web-based survey using best-worst scaling (BWS) to rank concept priorities.
• Analysis of priorities within domains (e.g., Communication, Daily Activities, Emotions) overall and by AD Group.

Main Results:

• Highest priority concepts overall included maintaining train of thought, taking medications correctly, feeling a sense of purpose, staying safe, socializing with family, and understanding conversations.
• Concept priorities varied across AD Groups, with "ability to live on your own" decreasing in priority and "socializing with family" increasing in importance for moderate/severe AD groups.
• Interim findings from 415 respondents indicated diverse demographics and AD Group representation.

Conclusions:

• Mixed-methods research confirms the importance of "What Matters Most" (WMM) concepts across the AD continuum.
• Best-worst scaling (BWS) reveals that within-domain priorities shift with disease severity.
• Future analyses will explore demographic/clinical subgroup differences and integrate findings with clinical outcome assessments (COAs) and qualitative data.