Get Real With Meeting Centres
Research type
Research Study
Full title
Get Real with Meeting Centres: A Realist Evaluation of Locally-Driven Social Care For Those Affected By Dementia
IRAS ID
294636
Contact name
Dawn Brooker
Contact email
Duration of Study in the UK
2 years, 0 months, 0 days
Research summary
Research Summary
Social care for people living with dementia, who require support to live at home with a decent quality of life, is in crisis in many parts of the country, particularly in rural areas. Individuals and families need reliable long term support but many community initiatives struggle to maintain beyond 1-2 years. This research focuses on the sustainability of Meeting Centres for people and families living with dementia in rural communities in England and Wales. Many UK community groups find MCs attractive and achievable. However, it is not understood how these diverse communities can ensure they are putting in place strategies that will help them sustain in the longer term, over the initial 1-2 years start-up. This research aims to understand how three well-established MCs in rural counties have achieved this within the current UK context. Stakeholders from each MC, including members directly affected by dementia, will provide qualitative and quantitative data to build a theoretical model of how, why, for whom, in what contexts and to what extent MCs are successfully adopted and implemented by diverse communities. Willingness to pay for MC provision is explored utilising a health economic analysis through a Discrete Choice Experiment. This knowledge will be shared with emerging MCs so that scale-up can be accelerated for the benefit of those living with dementia and those supporting and caring for them.Summary of Results
We spoke to a total of 77 people across three Meeting Centre sites that we were looking at as case studies, in interviews and group discussions (27 at a Herefordshire Meeting Centre, 21 at a Worcestershire Meeting Centre and 29 at four Powys Meeting Centres run by the same organisation).
People who took part included 18 Meeting Centre attendees living with dementia, 13 family carers, 17 Meeting Centre staff and volunteers, 12 Meeting Centre trustees/those in governance roles, and 17 health and care sector professionals and other collaborators, involved with the Meeting Centres but not working for them. These numbers were largely as planned, except at the Worcestershire Meeting Centre where we did not manage to interview any family carers due to a lack of engagement of carers with Meeting Centre during time we were there, which was a notable finding in itself.
Interviews and discussions lasted between about 10 minutes and about 75 minutes, with most taking between 30 minutes and an hour. We identified 20 common themes in what people said in these conversations, which we then refined into 94 statements about what might cause what with regards to having an impact upon whether a Meeting Centre could keep going for a long period of time. These 94 statements were then group into just 7 broad, overlapping themes, as follows:
1. Referrals to the Meeting Centre and how it fits with the local health and care pathway
2. Reaching people and membership
3. Carer engagement and benefit
4. Venue and location issues
5. Relationships and collaboration with external groups and organisations (e.g. community partners and other dementia-focussed organisations)
6. Internal relationships and working practices for staff, volunteers and those involved with Meeting Centre governance
7. Finances and funding
A more detailed account of these findings, written for the general public, can be found in the following published booklets:
* What you can do to help your Meeting Centre: Suggestions for people who attend Meeting Centres
(https://scanmail.trustwave.com/?c=261&d=y_S35QoA1l9ZXQm-fIWDklZrOKptSiPUfydsXcMjSw&u=https%3a%2f%2fu2790089%2ect%2esendgrid%2enet%2fls%2fclick%3fupn%3dXv3JSvJ-2B3M71ppf7N9agbaz5pmVrINEQRdhIsRw0mr40vATKKrbrr8ahmOcs1Zg6izDyrsc1aIGy0xzSJLjGEK3G2IdlXHlwRPIBP0LSHpc0c2DVF1tnmASZVvBS7MwT-b3P%5fE1aO2-2BZlVOSJJV-2FajQqskegTd6IRomHYTi-2Fbt8SH3YId-2BnCcSoyXcRWvlIKID7zfE-2FPTSGGJzKnaa4MSfBQZF0TzP2XQT5qlYB6-2FLxh895IYbTKgDfA7NuaJ1-2Bx7bdg-2FC-2BV49V7qzpR1imXTEV2F6dVWDwW7sRDs7SG7nSG7Ch8pT9ws0SQnel-2F-2BywKUkgNT-2FCAESAFR9-2BWCWFIgxfyTlg-3D-3D
* Keeping Meeting Centres going long term: Recommendations for people running Meeting Centres
(https://scanmail.trustwave.com/?c=261&d=y_S35QoA1l9ZXQm-fIWDklZrOKptSiPUfy8-CZwkQg&u=https%3a%2f%2fu2790089%2ect%2esendgrid%2enet%2fls%2fclick%3fupn%3dXv3JSvJ-2B3M71ppf7N9agbaz5pmVrINEQRdhIsRw0mr6mSbHOrWdJHRQYXPZwHOe9K4-2Bn-2BbObUhtvr0kw1Hn2exgJ1mnWBituirZi-2BoNoPJ71W-2FjIs8lvhl0SkW4zM5kowQnX%5fE1aO2-2BZlVOSJJV-2FajQqskegTd6IRomHYTi-2Fbt8SH3YId-2BnCcSoyXcRWvlIKID7zfP31QhjGX7zouKuMQHD3iZKX53j2dkl9bM9kfOGcR87VxpEQWeF6-2F8-2FqxK71vBP7zhadtEmfbQJ14QYFz330HqwkunZt03FnPmO6ix6Ku08l42Bfpi0AoO7QVlTzzcsHyrAlpzLUNmd4CucjmgLWFsA-3D-3D
* Sustaining Meeting Centres and similar community-led dementia support: Suggestions for health and care professionals
(https://scanmail.trustwave.com/?c=261&d=y_S35QoA1l9ZXQm-fIWDklZrOKptSiPUfy5tWJF2FQ&u=https%3a%2f%2fu2790089%2ect%2esendgrid%2enet%2fls%2fclick%3fupn%3dXv3JSvJ-2B3M71ppf7N9agbaz5pmVrINEQRdhIsRw0mr75lPKwfmsY-2BiaQGZmh3-2BAcuzgqt0qbyCIprZhb2zDWfD9HzkaQ6fxQDYSz78jc-2FWumQIjCVuS8HxNJpycjK8tYtyRHGM9UVpwh9E67zvDe1olbEdq-2BBIVbBSFdsQ3kIWM-3DWwog%5fE1aO2-2BZlVOSJJV-2FajQqskegTd6IRomHYTi-2Fbt8SH3YId-2BnCcSoyXcRWvlIKID7zfashISGm0CRdO1fWAlIXuNytUpeFx7PC3VURFoI72ajML5b2Pzt2tZSK-2F45-2Fv5RgAlrMbFxBNRsVVvWXvVUa-2FeaO3jWcOSh2otFjGJM0uIgPZpGL4l-2FGdlUoqkl6hIPegS-2BSBPaEYkUh-2Ft5D0-2FckT-2Fw-3D-3DSurvey regarding what people value about what Meeting Centres can offer:
Designing this survey was difficult, with some changes to what was originally planned. It had to go through various rounds of consultation with people and redesign, before we found a solution likely to work as intended. It was originally supposed to be targeted towards both people living with dementia and those that support them. However, our consultation with members of the public with direct experience of dementia strongly suggested it would be too complex to be accessible to the majority of Meeting Centre attendees, and may even cause stress and confusion for them. Due to kind of questionnaire it was, it had to take a particular format and it was not possible to simplify further. Hence the target audience of the questionnaire was reconsidered as family/informal carers only. We did, however, do extra group discussions with people living with dementia at Meeting Centres, on the same topics as were in the questionnaire to compare with the results of the survey. This was to ensure we also captured the voice of people living with dementia on these topics.
This, along with the challenging conditions cause by the COVID-19 pandemic for our Meeting Centre study sites during 2021 and into 2022, meant we perhaps had a lower response rate than anticipated, with 121 responses. While this is well under our original stated target of 300 responses, it was enough to run a useful and informative analysis to compare with what we found in interviews and group discussions.
Key findings were that there was a strong preference for people to stay with their current Meeting Centre offer, rather than change. However, overall, the preferred Meeting Centre would have the following offer:
* Activities: A mix of brain-stimulating and physical activities, and useful information (as opposed to just one of those 3 elements)
* Emotional Support: Opportunities to use and learn skills (as opposed to relaxation or peer support, or a mix of all 3 elements)
* Social Opportunities: A mix of chatting with friends, meeting new people and doing activities (as opposed to just one of those 3 elements)
* Attendance: Multiple times a week, with people able to go whenever they want, ideally for free
The triangulation focus groups suggested:
* Activities: Brain-stimulating and physical activities were valued, information less so
* Emotional Support: Skills and peer support were valued, but not relaxation
* Social Opportunities: All were valued, with the view that these elements could not be distinguished
* Attendance: Mixed response on whether people wanted to attend more or not; No strong opinions on availability to drop in, nor on costBarriers to attending Meeting Centres:
Publicly available data regarding the population of Herefordshire and Worcestershire was compared with membership data from the same region's 13 Meeting Centres. The following were identified as potential barriers to attendance of MCs:
* Diagnosis targets not being met
* Unavailability of both personal and public transport
* No Meeting Centres in many areas
* Isolation and other rural community challenges posing barriers to accessing health/social care support (including Meeting Centres)
* Cost of attending
* Stigma deterring both diagnosis and willingness to attend Meeting Centres
In addition, interviews were completed with 15 people, including 6 people living with dementia and family carers who did not attend a Meeting Centre, 7 Meeting Centre staff and trustees, and 2 health and social care professionals. A focus group discussion was conducted with 6 health and social care professionals who could potentially refer people to Meeting Centres. Seven themes were identified as barriers to attendance:
1. Problems attending due to unmet support needs
2. Costs
3. Poor health
4. Not wanting or needing what Meeting Centres could offer
5. Poor and/or inaccurate perceptions of Meeting Centres
6. Problems learning about or being referred to Meeting Centres due to a poorly functioning dementia care pathway
7. Problems attending due to travel
Associated recommendations were made under the following headings: Meeting needs; Transforming perceptions; Improving inclusion and raising awareness; and Transforming practice.REC name
Wales REC 4
REC reference
21/WA/0185
Date of REC Opinion
11 Jun 2021
REC opinion
Further Information Favourable Opinion