BACKGROUND: The What Matters Most (WMM) project was designed to assess treatment-related needs, preferences, and priorities among individuals with or at risk for Alzheimer’s Disease (AD) and their caregivers. The first phase of research involved a qualitative study to identify a comprehensive set of concepts of interest (COIs) that are meaningful to individuals across the AD continuum.
METHODS: Interviews were conducted with 60 clinically referred individuals and caregivers across 5 AD stages (n=12 each): Group 1 (non-clinically impaired individuals with AD pathology), Group 2 (Mild Cognitive Impairment (MCI) individuals and AD pathology), Group 3 (individuals with mild AD), Group 4 (individuals with moderate AD and their caregivers), Group 5 (caregivers of individuals with severe AD). Interviews were conducted by experienced interviewers, audio-recorded, and transcribed. Qualitative data analysis included identification of dominant trends in each interview and comparison across subsequent interviews to generate themes or patterns in the description of AD symptoms, impacts, and desired treatment outcomes.
RESULTS: All participants endorsed current issues related to memory and nearly all participants (n=55; 91%) across the 5 groups endorsed symptoms related to communication and language. Groups 1-3 reported an impact on mood or emotions (n=23; 63.9%) and a decrease in social activities or outgoingness (n=17; 47%). Current and future concerns reported by the overall sample included memory (n=48; 80%), dependence (n=40; 66.7%), and “other” concerns (n=33; 55.0%), e.g., uncertainty about the future, burdening others. Improvement/restoration of memory was the most desired AD treatment outcome (n=40; 67%), followed by stopping AD progression (n=35; 58.3%).
CONCLUSION: Issues with various aspects of cognitive functioning—particularly in memory and communication—are present even in the earliest stages, including those without a formal AD diagnosis. Improved memory and disease modification were treatment outcomes considered most important to participants across all 5 AD stages. Results from this study will inform the second phase of the WMM project—the development of a quantitative study to elicit the relative importance of these COIs to people at risk for and living with AD and their caregivers. Collectively, the WMM results lay the foundation for the development of recommendations for clinical outcomes assessments in research studies.
