# Co‐Design of a Community of Practice for People With Personal and Professional Expertise or Interest in Dementia in Australia

**Authors:** Eliza Watson, Sadia Afrin, Clarissa Giebel, Katrina M. Long, Jane Thompson, Matthew F., Chris Moran, Yen Ying Lim, Darshini Ayton

PMC · DOI: 10.1111/hex.70503 · Health Expectations : An International Journal of Public Participation in Health Care and Health Policy · 2026-02-26

## TL;DR

This paper describes the co-design of an online community for people in Australia with personal or professional experience of dementia to share knowledge and support.

## Contribution

The paper introduces a co-designed virtual community platform tailored for dementia stakeholders in Australia.

## Key findings

- Participants emphasized the need for a respectful and accessible online space for dementia-related discussions.
- The community platform includes features like webinars, forums, and resource banks to support learning and networking.
- A public website and members-only platform were developed based on participant input.

## Abstract

Communities of practice offer an opportunity to break down siloes for those with personal and professional experience of dementia. We aimed to design the Dementia Learning and Research Community in Australia, a virtual space to bring people with an interest or experience of dementia together to learn from each other, and provide opportunities for education and networking.

A three‐phase co‐design process was conducted, consisting of six co‐design workshops (or two workshops per phase) with people with personal or professional experience of dementia. The workshops addressed the three elements of a community of practice—the community, domain and practice. Participants discussed their preferences for these elements through facilitated group discussions and were provided with summaries of key points after each workshop.

A total of 16 participants attended the workshops, including people living with dementia, carers, healthcare workers and researchers. They identified the need for a comfortable, respectful space that covers a range of research and care‐based topics. Participants suggested webinars, discussion forums, panel sessions and resource banks within a members' only online platform. They highlighted the need for platform accessibility for people living with dementia and those in rural areas. A public facing website and members' only platform have now been created.

This co‐design process successfully brought together a range of participants with personal and professional experience of dementia to identify preferences for a community of practice on dementia across Australia. Future evaluations of the members' only platform will allow it to continue to evolve and identify areas for improvement.

A Public Advisory Committee (comprising one person living with dementia and three former carers of people living with dementia) were involved during the grant writing stage, reviewed research documents (including participant information sheets) and provided guidance on the co‐design workshop content. Two of the members of the committee who are former carers also reviewed this manuscript and are co‐authors.

## Linked entities

- **Diseases:** dementia (MONDO:0001627)

## Full-text entities

- **Diseases:** Alzheimer's disease (MESH:D000544), Dementia (MESH:D003704), DLRC (MESH:D003147)
- **Species:** Homo sapiens (human, species) [taxon 9606]

## Full text

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## References

28 references — full list in the complete paper: https://tomesphere.com/paper/PMC12946508/full.md

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Source: https://tomesphere.com/paper/PMC12946508