Evidence map›Paper›PMID 40547254›Full record

ArticleFrontiers in dementia2025

Designing an overview Theory of Change for a multi-component support community for people affected by rare dementia.

Mary Pat Sullivan, Paul M Camic, Emma Harding, Joshua Stott, Gill Windle, Ian Davies-Abbott, Sebastian J Crutch

Abstract read
In one paragraph

Article in Frontiers in dementia, 2025. 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

7 authors.

Mary Pat SullivanFaculty of Education and Professional Studies, School of Social Work, Nipissing University, North Bay, ON, Canada.
Paul M CamicInstitute of Neurology, Dementia Research Centre, University College London, London, United Kingdom.
Emma HardingInstitute of Neurology, Dementia Research Centre, University College London, London, United Kingdom.
Joshua StottDepartment of Clinical, Educational and Health Psychology, University College London, London, United Kingdom.
Gill WindleAgeing and Dementia @ Bangor, School of Health Sciences, Dementia Services Development Centre, Bangor University, Bangor, United Kingdom.
Ian Davies-AbbottFaculty of Health Studies, The Centre for Applied Dementia Studies, University of Bradford, Bradford, United Kingdom.
Sebastian J CrutchInstitute of Neurology, Dementia Research Centre, University College London, London, United Kingdom.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Introduction: There is growing awareness of people living with diverse dementia syndromes, many of whom are younger in age, with distinct support needs. Planning for increasing numbers of people living with dementia and subsequent models of support has largely overlooked this population. To address this gap, the aim was to design a Theory of Change for multi-component rare dementia support. Methods: Intervention development frameworks underpinned the construction of a Theory of Change informed by research evidence on rare dementia support and an iterative consultation process with people with lived experience, researchers, educators and health and social care practitioners. Results: The Theory of Change illustrates pathways to activities for continuous and tailored support solutions, education and knowledge production. Characteristic features include relationship, connection and continuity for people with lived experience, training and networking for professionals, and relational support with a commitment to ongoing learning for the rare dementia support team. Conclusion: The Theory of Change is positioned to flexibly support people affected by rare dementia, strengthen capacity within all sectors, improve service quality whilst maintaining a commitment to knowledge production and mobilization.

Indexed as

biosocialitybiosolidarityprogram theoryrare dementiarare dementia supportsupport communityTheory of Changeyoung onset dementia

Identifiers

PMID40547254
PMCPMC12179089

What OpenQuestion holds

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Registered trials

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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.