A Community of Practice to increase education and collaboration in dementia and ageing research and care: The Liverpool Dementia & Ageing Research Forum

Abstract Background Too often, dementia research is conducted in research silos without thorough integration and the involvement of people with lived experiences, care professionals and the Third Sector. Research can also get lost in academic publications, without reaching those benefiting most from the evidence. The aim of this methods and evaluation paper was to outline the aims, components and evaluation of the public‐facing and ‐engaging Liverpool Dementia & Ageing Research Forum, to provide a blueprint for setting up similar communities of practice. Methods The Forum was set up in 2019 with the aim to (a) connect different stakeholders in dementia and ageing and co‐produce research and to (b) inform and educate. This paper provides an account of the Forum model and evaluates the following key elements: (1) engagement; (2) experiences of the Forum and its impact (via an online evaluation survey and three reflections). All Forum members and attendees were asked to complete a brief evaluation survey about their experiences from October to November 2022. Three regular Forum attendees provided a case study about their involvement and its impact. Findings The Forum has reached out to diverse stakeholders and the general public, generating growing interest and engagement since its initiation. Forty‐four members and attendees completed the survey. Most attendees completing the evaluation survey have so far engaged in between 5 and 20 activities (47.8%), and 91% felt the aims of the Forum have been met. Engaging in the Forum has produced various benefits for attendees, including increased research capacity and knowledge, as well as improved connectivity with other stakeholders. Eleven percent of respondents, 39% of lived experts, stated they experienced improved access to postdiagnostic care. Conclusions This is the first reported multistakeholder Community of Practice (CoP) on dementia and ageing. We make key recommendations for setting up and running similar dementia CoP, as they provide a noninterventional format for raising awareness, capacity and access to dementia care. Patient and Public Involvement This paper reports on the involvement and engagement of people with dementia, unpaid carers, health and social care providers and Third Sector organisations in a CoP.

A broader approach to involving lived and professional experts in the co-design of research, and also empowering and advancing their knowledge, is by creating a Community of Practice (CoP). Communities of Practice can help facilitate wider and more in-depth social learning and knowledge exchange compared to individual learning. 11 Specifically, communities of practice bring together peers and professionals and experts from similar backgrounds, such as dementia, and enable learning through social engagement and joint participation in social practices, such as attending topic-specific group events and activities and engaging in topical discourse and discussion. Developed by Wenger,[12][13][14] this social theory has been employed in various settings outside of the educational sector, and in dementia, for example, has been found to effectively bring together a diagnostic clinical network 15 and primary care memory clinics. 16 However, it appears that no CoP, to date and reported in the literature, has been brought together to share knowledge about dementia care and to jointly generate research ideas for collaborative delivery, with diverse stakeholders from academia, health and social care, the voluntary and community sector and lived experience.

| The Liverpool Dementia & Ageing Research Forum
The international Forum, which is based in Liverpool, comprises four regular activities, which address each or both aims of the Forum to different degrees, enabling as large an engagement and skill-building of attendees and members as possible: (1) bimonthly public seminars/ webinars; (2) monthly journal clubs; (3) biannual regional networking meetings and (4) an annual conference. Public seminars turned into webinars during the COVID-19 pandemic and have remained so.
Seminars are free to the public and open to anyone with an interest in dementia and ageing. At each webinar, a different speaker shares their research or overview of care provision, which is then discussed with the audience via a moderator. Previous topics included carer resilience, dementia in South Asian minority groups, innovative longterm care for dementia, falls in older adults, Dementia Care Navigation and Admiral Nurses, as well as social and spatial inequalities in healthcare use for people living with dementia.
Monthly journal clubs are open to members interested in discussing the latest dementia research in the field and are normally attended by postgraduate students, academics, clinicians and Third Sector providers. To date, these have been held remotely to enable people outside the University of Liverpool to join easily.
Regional networking meetings are taking place twice a year, virtually to date, and last up to 90 min. Each meeting involves two regional speakers presenting their care services or initiatives, followed by a discussion and a virtual roundtable update and discussion on ongoing services, initiatives and research. This provides a more open platform for networking and collaboration.
The annual conference originally started face-to-face and has returned to face-to-face delivery after 2 years of remote delivery.
Based on the continued growth of membership and attendees, the fourth annual conference was the first to invite open abstract submissions from academics, students, care providers and people with lived experiences of dementia and ageing.

| How is it maintained?
The Forum was set up by C. G., as a result of recognising diverse expertise in the dementia care field across the region, despite a lack of a coherent network or Forum to engage with and learn from one another. The Forum is thus led and organised by C. G., with additional logistical and planning support provided for the annual conference  Table A1. Three purposefully varied stakeholders and lived experts were approached about their engagement, experiences of involvement and the impact this has had on themselves as a person and within their professional/caring role.
No ethics approval was required as the feedback and evaluation survey on engagement and experiences of the activities of the Forum involved registered Forum members, and no participants were recruited for this feedback.

| Data analysis for evaluation
Data (survey responses) were analysed by google forms automatically, generating frequencies of responses for each question, graphs and diagrams.

| Recommendations for similar CoPs
Based on the host's experiences of running the Forum, and on the member's experiences of engaging with the Forum, this paper provides key recommendations for setting up and running a similar CoP.

| Participation and engagement
Registration numbers for the bimonthly seminar/webinar series are shown in Figure 1. The first three seminars took place face-to-face, with the format moved online due to COVID-19 after the March webinar series. As shown, this enabled a large increase in people registering for the webinar series, resulting in increased attendance numbers. The greatest level of interest was reported for a webinar on a dementia core outcome set (n = 533), 17 the impact of COVID-19 on dementia care (n = 364) 6,18 and caring for a parent with dementia from a distance (n = 307).
F I G U R E 1 Registrations for bimonthly seminars/webinars. The first three seminars were held face-to-face, and due to COVID-19 the May seminar was moved and formed into a webinar in July. All subsequent talks have been held in webinar format and will continue to do so. When required, the ARC NWC provides minimal administrative support for hosting the annual conference and room bookings for face-to-face networking meetings, and support with public adviser fee payments for those lived experts who become actively involved in specific grant applications.

| Demographics
Forty-four Forum members and users completed the evaluation survey between October and November 2022. Survey responders comprised a mix of academics, health and social care professionals, postgraduate students and lived experts, and from a mix of within the Liverpool region (n = 24, 54.5%), UK-residing outside Liverpool (n = 14; 31.8%) and from outside the United Kingdom (n = 6; 13.7%).

| Engagement with activities
Engagement with activities ranged from '0' to date to over 20, with the majority of respondents having participated in between 1-5 (45.5%) and 5-10 (34.1%) activities. The most commonly engaged activity of all four was bimonthly public webinars/seminars (n = 35; 79.5%), with one respondent not having participated in an activity yet as a newly added member (see Figure 2).

| Feedback
The vast majority of responders stated that the aims of the Forum were met (91%), with 7% stating 'maybe' and one person stating 'no'.
When asked why responders were attending Forum events, 88% stated 'to find out more about the latest evidence research and evidence', with 64% stating 'to meet peers and connect with different stakeholders and experts in the field. Over a third wanted 'to jointly develop and apply for research funding and get involved in research'.
As a result of the Forum, two-thirds of responders have met experts in the field and learned about different services, with nearly half of the responders having engaged in research by co-producing research.
Eleven percent (n = 5) also noted improved access to support services. Of all lived experts who shared their views (n = 13), this equates to 38.5% who reported positive impacts on access to care.
All responders had positive to very positive (93%), or neither negative nor positive experiences of the Forum.

Impact
Being involved with the Forum and research has enabled me to understand my worth and not be backward in coming forward that what I must contribute is as important and valid as the professionals in the research and specialist field. I get much out of the Forum as I get to hear of research that I had no idea was/is happening. It also has provided me with the speaker to come to SURF and talk to our group that can run to 30 people, but our notes go to over 100. The skills I have developed during this time really are to do with the knowledge I have developed plus not to sit quietly in discussions but to take part as I have as much knowledge as any of the experts.