ArticleAlzheimer's & dementia (New York, N. Y.)
How do we put meaning into meaningful benefit? Perspectives from the lived experience.
Article in Alzheimer's & dementia (New York, N. Y.). The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.
What it found
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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.
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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.
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Who cites it
3 citing papers in PubMed.
- Priorities of people living with Alzheimer's and care partners: What Matters Most?Alzheimer's & dementia : the journal of the Alzheimer's Association · 2026Observational
- Clinical meaningfulness of anti-amyloid therapies in early Alzheimer's disease: Perspectives from the East and Southeast Asia region.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2026Review
- How do we put meaning into meaningful benefit? Perspectives from the lived experience.Alzheimer's & dementia (New York, N. Y.)Article
Corrections and comments
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Authors and funding
8 authors.
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Abstract
Meaningful benefit is a much-debated concept in Alzheimer's disease (AD). Research to date has primarily focused on change thresholds that are anchored in clinicians' or care partners' impressions; however, these thresholds are not inherently meaningful to people living with AD (PLWAD) and may not take their perspectives into account. By overlaying the lived experience of AD through the eyes of individual PLWAD and their care partners with clinical outcomes, we offer an important framework in which to consider meaningful benefit in terms of symptoms, functioning, and outcomes. The PLWAD and care partner interviews and surveys of the What Matters Most (WMM) research program have identified treatment-related needs, preferences, and priorities of people at risk of or living with AD and their care partners across the AD continuum. A WMM conceptual model of disease-created and refined through interviews with PLWAD and care partners across the AD severity spectrum-includes 50 concepts across six domains (social life/activities, thought processing, communication, daily activities, mood/emotion, and general independence) considered important to all PLWAD and care partners. From the PLWAD and care partner perspectives, an increase in time to the onset, development, or worsening of the symptoms in any of these meaningful concepts was considered a meaningful benefit. No single commonly used clinical outcome assessment captures all concepts of importance, nor the importance of time in AD; considering the lived experience and priorities of individuals affected by AD is crucial to put the "meaning" in "meaningful."
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Registered trials
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