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ArticleBMJ open2025

Better Living with Non-memory-led Dementia: study protocol for a randomised controlled trial of a web-based caregiver educational programme (BELIDE trial).

Aida Suarez-Gonzalez, Emilie Brotherhood, Amber John, Oliver Hayes, Sam Rossi-Harries, Nikki Zimmermann, Valerie Mansfield, Andrew Brand, Zoe Hoare, Deborah Fitzsimmons and 3 more

Registry-linked trialAbstract readClinical Trial Protocol
PubMed Full text at PMC Publisher
In one paragraph

Article in BMJ open, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT06241287 (Better Living With Non-memory-led Dementia), which is not on this 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.

NCT06241287 narecruitingnot on this map

Better Living With Non-memory-led Dementia: a Randomised Controlled Trial of a Web-based Caregiver Educational Programme

TypeinterventionalSponsorUniversity College, LondonRan2024 to 2027Enrolled238ConditionsDementiaArmsBetter Living with Non-memory led Dementia programme, Waiting list
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

13 authors.

Aida Suarez-GonzalezDementia Research Centre, UCL Queen Square Institute of Neurology, UCL, London, UK aida.gonzalez@ucl.ac.uk.ORCID http://orcid.org/0000-0002-0904-1031
Emilie BrotherhoodDementia Research Centre, UCL Queen Square Institute of Neurology, UCL, London, UK.ORCID http://orcid.org/0000-0002-6244-7735
Amber JohnADAPTLab, Clinical Educational and Health Psychology, Psychology and Language Sciences, University College London, London, UK.
Oliver HayesADAPTLab, Clinical Educational and Health Psychology, Psychology and Language Sciences, University College London, London, UK.
Sam Rossi-HarriesDementia Research Centre, UCL Queen Square Institute of Neurology, UCL, London, UK.
Nikki ZimmermannDementia Research Centre, UCL Queen Square Institute of Neurology, UCL, London, UK.
Valerie MansfieldDementia Research Centre, UCL Queen Square Institute of Neurology, UCL, London, UK.
Andrew BrandNorth Wales Organisation for Randomised Trials in Health & Social Care, Bangor University, Bangor, UK.
Zoe HoareNorth Wales Organisation for Randomised Trials in Health & Social Care, Bangor University, Bangor, UK.ORCID http://orcid.org/0000-0003-1803-5482
Deborah FitzsimmonsSwansea Centre for Health Economics, Swansea University, Swansea, Wales, UK.ORCID http://orcid.org/0000-0002-7286-8410
Katherine CullenSwansea Centre for Health Economics, Swansea University, Swansea, Wales, UK.ORCID http://orcid.org/0000-0002-3704-4598
Sebastian CrutchDementia Research Centre, UCL Queen Square Institute of Neurology, UCL, London, UK.
Joshua StottADAPTLab, Clinical Educational and Health Psychology, Psychology and Language Sciences, University College London, London, UK.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

introductionCarers of people with non-memory-led dementias such as posterior cortical atrophy (PCA), primary progressive aphasia (PPA) and behavioural variant frontotemporal dementia (bvFTD) face unique challenges. Yet, little evidence-based support and guidance are available for this population. To address this gap in services, we have developed a novel, web-based educational programme: the Better Living with Non-memory-led Dementia programme (BELIDE). BELIDE was co-designed with people with lived experience of non-memory-led dementia and a previous pilot study confirmed its feasibility as an online intervention. This protocol outlines the randomised controlled trial (RCT) to evaluate the clinical and cost-effectiveness of BELIDE. METHODS AND ANALYSIS: This is a parallel-group, single-blind, RCT of 238 unpaid caregivers of people diagnosed with PCA, PPA or bvFTD recruited internationally among members of the UK-based organisation Rare Dementia Support. The intervention (BELIDE programme) consists of six structured online educational modules tailored to each phenotype, a virtual onboarding session, real-life practice tasks and up to two follow-up facilitation sessions. The group receiving the intervention will be given access to the programme, while the control group will receive treatment as usual and be placed on a wait-list to receive access to the programme once they complete their participation in the trial. The allocation ratio will be 1:1 stratified by dementia diagnosis and gender. The primary outcome is reduction in caregiver depressive symptoms. Secondary outcomes include stress, anxiety, self-efficacy, quality of life and caregiver-patient relationship quality. Data will be collected online via Qualtrics surveys at baseline, 8 weeks and 6 months post-randomisation. A mixed-method process evaluation with a subgroup of intervention participants will explore barriers and facilitators for engagement. A health economics evaluation will also be conducted to assess cost-effectiveness. If effective, this programme could improve access to caregiver support for non-memory-led dementias by providing scalable, tailored education. ETHICS AND DISSEMINATION: Ethical approval has been granted by University College London Research Ethics Committee (8545/007). The results will be disseminated via peer-reviewed publications, conferences, stakeholder events and open-access resources.

trial registrationThis trial has been registered prospectively on the Clinical Trials registry, first posted on 5 February 2024 under registration number NCT06241287.

Indexed as

CaregiversDementiaInternet-Based InterventionCost-Benefit AnalysisFemaleHumansInternetMaleQuality of LifeRandomized Controlled Trials as TopicSingle-Blind MethodCaregiversDementiaHealth Education

Identifiers

PMID40912705
PMCPMC12414229

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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.