Exploring the experiences of moderators from an asynchronous online dementia support forum: a qualitative interview study.

Abstract

Background: Asynchronous online forums provide flexible, accessible peer support for many people living with dementia and carers. Moderators are central to the functioning of these communities, yet little is known about their experiences. Objective: This study explored the experiences of individuals moderating an online dementia forum, including their motivations, perceived benefits, challenges, and suggestions for improvements. Methods: Moderators from a UK-based online dementia support forum were recruited using purposive sampling via forum administrators. Between January and March 2025, five moderators, all with dementia care experience, participated in remote semi-structured interviews. Interview topics included pathways into moderation, perceptions of the moderator role, experiences of supporting forum members, challenges encountered, perceived personal benefits, and views on the future development of online support communities. Interviews were transcribed verbatim and analysed using reflexive thematic analysis. Results: Four themes were produced: (1) ‘from support seeker to support provider’: moderators primarily identified as community members rather than authority figures, following a trajectory from receiving support as a carer to actively facilitating community support; (2) ‘understanding through shared experience’: lived experience of dementia was seen as essential for empathy, credibility, and sensitive responses, though sometimes prompted strong emotional reactions; (3) ‘giving back and gaining in return’: moderation offered purpose, structure, and social connection, particularly post-retirement and following transition out of caring ; (4) ‘balancing growth with community preservation’: Forum expansion increased workload, spam management demands, and safeguarding responsibilities, and moderators were cautious about social media-style features and AIgenerated content undermining the effectiveness of support exchanges. Conclusions: Moderators play a crucial, value-driven role in sustaining dementia support forums, extending beyond administrative duties. Findings suggest that moderators occupy a distinctive position as both recipients and providers of peer support, drawing on experiential expertise to maintain trust and community cohesion. Forum growth and technological innovations present opportunities and challenges, highlighting the needs to balance scalability with authenticity in online support communities.