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  1. Home
  3. Isupport For Rare Dementias: A Mixed-methods Non-randomised Feasibility Study Of An Online Self-help Programme For Carers
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  3. Isupport For Rare Dementias: A Mixed-methods Non-randomised Feasibility Study Of An Online Self-help Programme For Carers

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iSupport for rare dementias: a mixed-methods non-randomised feasibility study of an online self-help programme for

Bethan Naunton Morgan1, Gill Windle2, Carolien Lamers3

  • 1School of Psychology and Sports Science, Brigantia Building, Bangor University, Penrallt Road, Bangor, UK. psu2fc@bangor.ac.uk.

Pilot and Feasibility Studies
|April 30, 2025

View abstract on PubMed

Summary
This summary is machine-generated.

The iSupport for Rare Dementias (RDC) online program shows promise for supporting carers of individuals with rare dementias. While recruitment was successful, strategies are needed to improve participant retention and diversity in future studies.

Keywords:
AdaptationCaregiverCarerInternetRare dementiaSupportive interventioneHealthiSupport

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Area of Science:

  • Neuroscience
  • Gerontology
  • Public Health

Background:

  • iSupport for dementia carers is a WHO-developed online program for Alzheimer's and vascular dementia.
  • iSupport for Rare Dementias (RDC) is the first adaptation for carers of individuals with frontotemporal dementia, posterior cortical atrophy, primary progressive aphasia, or Lewy body dementia.

Purpose of the Study:

  • To assess the feasibility of recruitment, retention, and outcome measures for iSupport RDC.
  • To evaluate the acceptability and usability of the iSupport RDC program.

Main Methods:

  • A 12-week mixed-methods feasibility study involving carers recruited through the Rare Dementia Support Network.
  • Data collection via online interviews, self-report measures (depression, anxiety, burden, resilience), and the NoMAD questionnaire.
  • Usability assessed through self-report and Blackboard data.

    • Main Results:

    • Recruitment targets were met with 34 participants; 70.6% completion rate for outcome measures.
    • The iSupport RDC program was found to be acceptable (NoMAD score 3.5).
    • Qualitative feedback highlighted technical difficulties, usefulness, and the value of providing support at diagnosis.

    Conclusions:

    • Recruitment goals were achieved, but sample diversity was limited.
    • Attrition necessitates strategies for future retention, including technical testing of online interventions.
    • iSupport RDC demonstrates potential as a valuable resource for rare dementia carers.