Evidence mapPaperPMID 41980346Full record

ArticleThe journal of prevention of Alzheimer's disease2026

Pathways to participation - a scoping review outlining barriers and enablers to participation in dementia research.

Lukas A Duffner, Soraya Moradi-Bachiller, Dianne Gove, Ana M Diaz-Ponce, Angela Bradshaw, Jean Georges

Abstract readScoping Review
In one paragraph

Article in The journal of prevention of Alzheimer's disease, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing 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

1 citing paper in PubMed.

  1. Engagement of understudied populations as community change: The South Texas ADRC model.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2026
    Article
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

6 authors.

Lukas A DuffnerAlzheimer Europe, Senningerberg, Luxembourg. Electronic address: lukas.duffner@alzheimer-europe.org.
Soraya Moradi-BachillerAlzheimer Europe, Senningerberg, Luxembourg.
Dianne GoveAlzheimer Europe, Senningerberg, Luxembourg.
Ana M Diaz-PonceAlzheimer Europe, Senningerberg, Luxembourg.
Angela BradshawAlzheimer Europe, Senningerberg, Luxembourg.
Jean GeorgesAlzheimer Europe, Senningerberg, Luxembourg.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundOngoing participant recruitment challenges in dementia research highlight the need to understand public perspectives on research participation. This scoping review explored existing literature on barriers and enablers to the recruitment and retention of participants in dementia studies.

methodsA scoping review was conducted in PubMed and PsycINFO, following the Arksey and O'Malley framework, using a keyword profile informed by a pilot search (full protocol available at osf.io/n8j4u). Abstract and full text screening were performed in duplicate and data were extracted using predefined criteria. Reported barriers and enablers were grouped into overarching themes. A panel of people with dementia and carers subsequently shared their perspectives on recruitment challenges and reflected on the review findings.

resultsForty-five publications were included for narrative synthesis, representing 112,011 participants (pooled mean age = 69.3 years; 64.8 % female). Most studies originated from the U.S. and focused on clinical dementia research, with an emphasis on recruitment rather than long-term retention. Barriers were grouped into eight themes: mistrust; fears, worries and concerns; awareness; beliefs and attitudes; practical and logistical constraints; study-related factors; informational barriers; and barriers related to carers and support systems. Enablers included internal motivators (e.g. altruism) and external facilitators (e.g. financial compensation or flexible scheduling).

conclusionsWhile significant research gaps remain, many barriers to participation in dementia research appear modifiable. Targeted actions addressing these modifiable factors may enhance recruitment and retention, which may strengthen the inclusivity and impact of dementia research.

Indexed as

Biomedical ResearchDementiaPatient ParticipationPatient SelectionCaregiversFemaleHumansBarriersDementia research participationEnablersRecruitmentRetention

Identifiers

PMID41980346
PMCPMC13092670

What Socratic holds

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LicenceCC BY-NC-ND
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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.