Evidence map›Paper›PMID 37821924›Full record

ArticlePilot and feasibility studies2023

"Better Living with Non-memory-led Dementia": protocol for a feasibility randomised controlled trial of a web-based caregiver educational programme.

Aida Suárez-González, Amber John, Emilie Brotherhood, Paul M Camic, Roberta McKee-Jackson, Mel Melville, Mary Pat Sullivan, Rhiannon Tudor-Edwards, Gill Windle, Sebastian Crutch and 3 more

Registry-linked trialAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Pilot and feasibility studies, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT05525377 (Better Living With Non-memory-led Dementia), which is not on this map. Cited by 6 papers.

0numbers the graph read from it
0cells of the map it votes in
6citing 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.

NCT05525377 nacompletednot on this map

Better Living With Non-memory-led Dementia: Feasibility Study on the Effects of a Blended Online Training Course for Carers of People With Atypical AD and FTD.

TypeinterventionalSponsorUniversity College, LondonRan2022 to 2023Enrolled31ConditionsPrimary Progressive Aphasia, Frontotemporal Dementia, Alzheimer DiseaseArmsBetter living with non-memory led dementia course
3 · Its place in the literature

Who cites it

6 citing papers in PubMed.

  1. Trial
  2. Article
  3. Article
  4. Article
  5. Article
  6. 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

13 authors.

Aida Suárez-GonzálezDementia Research Centre, UCL Queen Square Institute of Neurology, UCL, London, WC1N 3BG, UK. aida.gonzalez@ucl.ac.uk.ORCID http://orcid.org/0000-0002-0904-1031
Amber JohnPsychology and Language Sciences, University College London, London, UK.
Emilie BrotherhoodDementia Research Centre, UCL Queen Square Institute of Neurology, UCL, London, WC1N 3BG, UK.
Paul M CamicDementia Research Centre, UCL Queen Square Institute of Neurology, UCL, London, WC1N 3BG, UK.
Roberta McKee-JacksonDementia Research Centre, UCL Queen Square Institute of Neurology, UCL, London, WC1N 3BG, UK.
Mel MelvillePsychology and Language Sciences, University College London, London, UK.
Mary Pat SullivanFaculty of Education and Professional Studies, School of Social Work, Nipissing University, North Bay, ON, Canada.
Rhiannon Tudor-EdwardsCentre for Health Economics and Medicines Evaluation, Bangor University, Bangor, UK.
Gill WindleDementia Services Development Centre, School of Medical and Health Sciences, Bangor University, Bangor, UK.
Sebastian CrutchDementia Research Centre, UCL Queen Square Institute of Neurology, UCL, London, WC1N 3BG, UK.
Zoe HoareSchool of Health Sciences, Bangor University, Bangor, UK.
Joshua StottDementia Research Centre, UCL Queen Square Institute of Neurology, UCL, London, WC1N 3BG, UK.
Rare Dementia Support Impact team

Funding

Economic and Social Research Council ES/S010467/1
6 · The paper itself

Abstract

backgroundNon-memory-led dementias such as posterior cortical atrophy (PCA), primary progressive aphasia (PPA) and behavioural variant frontotemporal dementia (bvFTD) are low prevalent and often affect individuals under the age of 65. Tailored educational and support resources for caregivers of people living with these dementia phenotypes are scarce and unevenly distributed geographically. Web-based educational programmes are emerging as promising alternatives to improve caregiver self-efficacy and well-being. Here, we present the protocol of a study aiming to assess the feasibility of a co-produced online educational programme for caregivers of people living PCA, PPA and bvFTD: the Better Living with Non-memory-led Dementia programme.

methodsA randomised controlled feasibility trial will be conducted on a sample of 30 caregivers of people living with PCA, PPA and bvFTD. Participants will be recruited among members of the support organisation Rare Dementia Support (based at UCL in the UK). The intervention group will be given access to an 8-week co-produced web-based educational programme consisting of 6 modules addressing education about PCA, PPA and bvFTD and support strategies for the person with dementia and for the caregiver. The control group will receive treatment as usual (TAU). Feasibility will be measured through feasibility of recruitment, clinical measurement tools and acceptability. Clinical measures will be used to assess preliminary efficacy and data on completion rates, missing data and variability used to decide on measures to be included in a full-scale trial. Allocation ratio will be 2:1 (intervention:control) stratified by diagnosis. Feasibility of recruitment and acceptability will be assessed. Clinical measures will be administered at baseline and 8-week and 3-month post-randomisation. The control group will be offered access to the intervention at the completion of data collection. Participants will be unblinded, and all measures will be self-reported online. DISCUSSION: Online-delivered educational programmes show potential for improving care competency of caregivers and may contribute to overcoming geographical inequalities in local provision of support services. This pilot study will inform a fully powered international trial to determine the effectiveness of Better Living with Non-memory-led Dementia.

trial registrationThis trial has been registered prospectively on the Clinical Trials Registry on 1st September 2022, registration number NCT05525377.

Indexed as

Behavioural variant frontotemporal dementiaCaregivingOnline interventionPosterior cortical atrophyPrimary progressive aphasiaWeb-based education

Identifiers

PMID37821924
PMCPMC10566043

What OpenQuestion holds

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LicenceCC BY
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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.