JMIR Publications

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:

Five moderators (four female, one male; aged 64-82), all with dementia care experience, participated in remote semi-structured interviews. Transcripts were 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 AI-generated content undermining the effectiveness of support exchanges.

Conclusions:

Moderators play a crucial, value-driven role in sustaining dementia support forums, extending beyond administrative duties. Forum growth and technological innovations present opportunities and challenges, highlighting the needs to balance scalability with authenticity in online support communities.