Evidence map›Paper›PMID 42657669›Full record

Observational studyAlzheimer's & dementia : the journal of the Alzheimer's Association2026

Priorities of people living with Alzheimer's and care partners: What Matters Most?

Carla DeMuro Romano, Emily Bratlee-Whitaker, Ann Hartry, Jim Taylor, Leigh F Callahan, Doreen Monks, Ian Kremer, Debra Lappin, Terry Frangiosa, Sanjyot Sangodkar and 12 more

Abstract readObservational Study
PubMed Full text at PMC Publisher
In one paragraph

Observational study in Alzheimer's & dementia : the journal of the Alzheimer's Association, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

22 authors.

Carla DeMuro RomanoRTI Health Solutions, Durham, North Carolina, USA.
Emily Bratlee-WhitakerRTI Health Solutions, Durham, North Carolina, USA.
Ann HartryEli Lilly & Co, Indianapolis, Indiana, USA.
Jim TaylorVoices of Alzheimer's (VoA), Washington DC, USA.
Leigh F CallahanDepartment of Medicine, University of North Carolina, Chapel Hill, North Carolina, USA.
Doreen MonksAdvocate and person living with Alzheimer's disease, Livingston, New Jersey, USA.
Ian KremerLEAD Coalition (Leaders Engaged on Alzheimer's Disease), Washington, District of Columbia, USA.
Debra LappinLappin Kramer LLC, Denver, Colorado, USA.
Terry FrangiosaFaegre Drinker Consulting, Washington, District of Columbia, USA.
Sanjyot SangodkarFaegre Drinker Consulting, Washington, District of Columbia, USA.
Jae LeeAbbVie Inc., Chicago, Illinois, USA.
Elaheh ShirneshanAbbVie Inc., Chicago, Illinois, USA.
Diana SlowiejkoGenentech, San Francisco, California, USA.
Dana DiBenedettiRTI Health Solutions, Durham, North Carolina, USA.
William L HerringRTI Health Solutions, Durham, North Carolina, USA.
Cooper BussbergRTI Health Solutions, Durham, North Carolina, USA.
Gabrielle J DardisRTI Health Solutions, Durham, North Carolina, USA.ORCID https://orcid.org/0000-0001-5947-9384
Diana GossRTI Health Solutions, Durham, North Carolina, USA.
Teresa EdwardsRTI Health Solutions, Durham, North Carolina, USA.
Lori McLeodRTI Health Solutions, Durham, North Carolina, USA.
Christine PoulosRTI Health Solutions, Durham, North Carolina, USA.
Russ Paulsen *UsAgainstAlzheimer's, Washington, District of Columbia, USA.ORCID https://orcid.org/0009-0002-8723-6659

Funding

UsAgainstAlzheimer's
6 · The paper itself

Abstract

introductionUnderstanding 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.

methodsThis 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.

resultsRacially 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.

Indexed as

Alzheimer DiseaseCaregiversActivities of Daily LivingAgedAged, 80 and overCross-Sectional StudiesFemaleHumansMaleMiddle AgedQualitative ResearchSurveys and QuestionnairesAlzheimer's diseasecare partneroutcomespatient‐centeredpatient experiencetreatment benefitWhat Matters Most

Identifiers

PMID42657669
PMCPMC13520114

What Socratic holds

Textmetadata
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the Socratic graph.