ReviewAlzheimer's & dementia : the journal of the Alzheimer's Association2025
Making outcome measures matter: Why should "what matters to people living with dementia" matter to dementia researchers?
Review in Alzheimer's & dementia : the journal of the Alzheimer's Association, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.
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.
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.
Who cites it
7 citing papers in PubMed.
- The MOMANT study, a caregiver support programme with activities at home for people with dementia: results of a randomised controlled trial.BMC geriatrics · 2026Trial
- Challenges when measuring person-centred dementia care in nursing homes: a discussion paper.International journal of nursing studies advances · 2026Review
- Measures used to evaluate psychosocial interventions in dementia care: A narrative review and synthesis.Journal of Alzheimer's disease : JAD · 2026Review
- A Feasibility Study of a Community-Based Program for Individuals Living With Dementia.Canadian journal of occupational therapy. Revue canadienne d'ergotherapie · 2026Article
- The Lawton and Brody a half century later: A case for contemporary revision.The Clinical neuropsychologist · 2026Article
- Making outcome measures matter: Why should "what matters to people living with dementia" matter to dementia researchers?Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025Review
- Person-centered intervention response in primary progressive aphasia: A secondary analysis of the Communication Bridge-2 randomized clinical trial.Alzheimer's & dementia (New York, N. Y.)Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors.
Funding
Abstract
This article provides an overview of evidence to support a call to action for dementia researchers to ensure that "what matters to people living with dementia" should be at the heart of any decision-making around the choices and design of outcome measures. There have been sufficient reviews observing how the outcome measures that have been used in previous research have not been those that have been valued by people living with dementia or their carers. If researchers continue to use existing measures that are not valued by people living with dementia, they will waste limited research resources by using measures that are not sufficiently sensitive to detect changes that might be attributed to interventions. It is time for researchers to collaborate internationally to ensure that resources are invested in designing and validating new approaches for measurement of psychosocial outcomes for those living with dementia. HIGHLIGHTS: Outcome measures that have been used in previous research have not been those that have been valued by people living with dementia or their carers. Existing outcome measures have been shown not to be fit for purpose and tend to focus on symptom reduction or broad conceptualizations of quality of life. Dementia researchers will need to collaborate internationally to ensure that resources are invested in designing and validating new approaches for measurement of psychosocial outcomes for those living with dementia.
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What OpenQuestion holds
Registered trials
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 OpenQuestion graph.