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Exploring the Experiences of Moderators From an Asynchronous Online Dementia Support Forum: Qualitative Interview
Catherine V Talbot1, Neil S Coulson2
1Bournemouth University, Poole, England, United Kingdom.
JMIR Formative Research
|July 7, 2026
Summary
Online dementia forum moderators transition from support seekers to providers, using lived experience to foster community. They balance forum growth and new technologies with preserving authentic peer support.
Area of Science:
- Gerontology
- Online Communities
- Digital Health
Background:
- Asynchronous online forums offer vital peer support for individuals with dementia and their carers.
- Moderators are essential to the success of these online dementia support communities.
- The experiences of these moderators remain largely unexplored.
Purpose of the Study:
- To explore the experiences of moderators within an online dementia support forum.
- Investigate their motivations, perceived benefits, challenges, and suggestions for improvement.
Main Methods:
- Purposive sampling recruited 5 moderators from a UK-based online dementia forum.
- Semi-structured interviews were conducted remotely between January and March 2025.
- Reflexive thematic analysis was used to analyze verbatim interview transcripts.
Main Results:
- Moderators evolved from support seekers to providers, leveraging lived dementia experience for empathy and credibility.
- Moderation provided purpose and social connection, especially for retired individuals or those transitioning from caregiving roles.
- Challenges included managing forum growth, spam, and safeguarding, with concerns about AI and social media features impacting authenticity.
Conclusions:
- Moderators are crucial for sustaining dementia support forums, acting as both peer support recipients and providers.
- Experiential expertise is key to maintaining trust and community cohesion in online dementia support.
- Balancing forum scalability and technological advancements with authenticity is vital for effective online support.
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