Engaging With a Community of Practice in Dementia: Impacts on Skills, Knowledge, Networks and Accessing Support

Background

To deliver implementable, meaningful research and advance knowledge, different stakeholders need to be brought together regularly via a suitable platform or community of practice. The Liverpool Dementia & Ageing Research Forum, set up in 2019, is a public/professional community of practice, providing in-person and remote events and activities to connect people living with dementia, unpaid carers, health and social care professionals, Third Sector representatives and commissioners. The aim of this study was to qualitatively explore the experiences and impacts of engaging with Forum events by different stakeholders.

Methods

Attendees of any Forum events were eligible to take part. We conducted remote semi-structured interviews about the experiences and impacts of engaging with the Forum between November 2023 and April 2024. Anonymised transcripts were coded by three research team members, including a trained public advisor (unpaid carer), using inductive thematic analysis.

Results

Seventeen attendees participated in the study. These included people living with dementia, unpaid carers, Third Sector representatives, academics and health and social care providers. Four overarching themes were identified in the data: facilitated networking within and outside of personal expertise, improved knowledge and capacity, empowerment by having one's voice heard and diversity in stakeholders but not the background. The Forum events were utilised on a drop- in and -out basis for most attendees, often picking events that were of immediate interest to them, whilst some attended almost all events. Engaging with the Forum was found to strongly facilitate increased networking and building relationships, especially outside of stakeholder background, whilst diversity in backgrounds of attendees, such as ethnic diversity, was lacking.

Conclusions

This Community of Practice has successfully brought together diverse stakeholders to network and expand their relationships, and increased knowledge and capacity in different stakeholder groups. Whilst the Forum was considered inclusive, future outreach work needs to ensure that greater diversity in backgrounds and personal experiences is reflected in attendees, and that a continuous flow of new attendees joins.

Patient and Public Involvement

One unpaid carer was involved as a public advisor and was supported in coding two anonymised transcripts and interpreting the findings. They also helped codesign the semi-structured topic guide.