Priorities of people living with Alzheimer's and care partners

Abstract

INTRODUCTION: Understanding the experience of people living with Alzheimer's disease (PLWAD) and care partners is central to defining meaningful treatment outcomes. The What Matters Most (WMM) research program seeks to identify and measure treatment-related needs, preferences, and priorities across the disease continuum.

METHODS: This mixed-methods, observational, US-based study included qualitative interviews and a cross-sectional, web-based quantitative survey assessing priorities among WMM model concepts and domains.

RESULTS: Racially and ethnically diverse participants represented the full spectrum of disease severity. Qualitative interviews (N = 64) supported a WMM conceptual model of disease comprising 50 concepts across six domains: General Independence, Thought Processing, Communication, Daily Activities, Emotions, and Social Life/Activities. All WMM concepts were deemed important, but the quantitative survey priority ranking (N = 640) identified differences in prioritization among PLWAD and care partners.

DISCUSSION: These findings provide novel, critical insights into the lived experience of Alzheimer's disease (AD) and the identification of meaningful treatment outcomes.