Meaningful to whom? Minimal clinically important differences and the priorities of individuals living with dementia for everyday function
Authors: Gilmore‐Bykovskyi Andrea , Dillon Kayla , Fields Beth , Benson Clark , Farrar Edwards Dorothy 
Published: February 2025

Alzheimer's disease and Alzheimer's disease related dementias (AD/ADRD) have a significant impact on an individual's functional cognitive abilities, highlighting the need to prioritize measures of function in evaluating minimally clinically important difference (MCID) thresholds in AD/ADRD research. Input directly from individuals living with AD/ADRD on measures of function are lacking in MCID discussions, including what it means to live with AD/ADRD and what type and degree of improvements are most meaningful across the disease continuum. Most measures for assessing function in AD/ADRD trials are largely focused on basic and instrumental activities of daily living (BADL, IADL), which lack aspects of everyday function that matter most to individuals living with AD/ADRD. Expanding outcome evaluation to other dimensions of everyday function and diversifying measurement approaches is essential for optimizing inclusion of personally meaningful aspects of everyday function prioritized by individuals living with AD/ADRD and improving detection of potentially more sensitive changes in functioning. This perspective outlines four directions to expand and integrate what matters most to individuals living with AD/ADRD into trial outcome evaluation, including (1) consideration of how what matters most to individuals living with AD/ADRD may change across the disease continuum from mild to advanced dementia, (2) identification and evaluation of goals around strengths‐based domains such as social participation rather than solely emphasizing deficits and losses, (3) utilization of goal‐attainment scaling to more specifically match individually‐specific functional goals, and (4) strengthening the inclusion and use of self‐report and performance‐based measures of function and triangulating these measures with informant‐report measures.

Highlights

Alzheimer's disease and Alzheimer's disease related dementias (AD/ADRD) have a significant impact on an individual’ functional cognitive abilities, of which changes in these abilities are measured through detection of minimally clinically important difference (MCID) thresholds to determine the effectiveness of AD/ADRD clinical trials.

Widely used measures for assessing MCID thresholds in AD/ADRD trials focus on basic and instrumental activities of daily living, presenting opportunities to expand measurement of MCID to account for other dimensions of everyday function that are prioritized by individuals living with AD/ADRD.

To expand outcome evaluation and improve integration of aspects of functioning that matter most to people living with AD/ADRD, we identify opportunities to incorporate more diverse strategies via goal‐attainment scaling, self‐report, and performance‐based measures as appropriate. We also highlight the importance of incorporating strengths‐based domains such as social participation, moving beyond deficit‐focused assessment of functioning.