Award Title: Sustaining locally-driven social care for those affected by dementia: A realist evaluation of successful Meeting Centres
Funder: Department of Health and Social Care

Abstract: Rationale: 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. The detrimental health impact of social isolation and loneliness is increasingly recognised. Survey data reveals 60% of people living with dementia report loneliness, isolation and losing touch with people in their lives since diagnosis. Around a quarter feel they are not part of their community and that people avoid them. Family carers provide the bulk of support, but there is a growing recognition that carers  health and wellbeing is negatively impacted over time. Families need reliable long-term support but may community initiatives struggle to maintain beyond 1-2 years. Scaling up provision of evidence-based community initiatives for people with dementia, and their families, is imperative.  Aims: This research will focus on the sustainability of Meeting Centres for people and families living with dementia in rural communities in England and Wales. Meeting Centres (MCs) originated in the Netherlands 20 years ago and there are now 150 Dutch MCs. The first two UK MCs were established in 2015 through the MEETINGDEM research programme, which took learning from the Netherlands and successfully adapted it to the UK, Italy and Poland. MCs provide small-scale, on-going social clubs, staffed by a small permanent team of staff and volunteers. They open 3 days per week, driven by local community groups, and provide activity and support driven by the needs and wishes of members. MEETINDEM demonstrated significant Quality of Life benefit to MC attendees compared with those receiving care as usual. There are now 13 UK MCs established (including Scotland and Wales) with 20 more due by 2021. 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 rural MCs have achieved this within the current UK context. This knowledge will then be shared with emerging MCs so that scale-up can be accelerated.  Methods: Utilising a recently developed programme theory (SCI-Dem) on sustainable adoption and implementation of community dementia interventions, Realist Evaluations of three established UK MCs will be undertaken. Stakeholders from each MC, including members directly affected by dementia, will provide qualitative and quantitative data. Data from all sources will refine the programme theory 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 will be explored utilising a health economic analysis through a Discrete Choice Experiment.  Outcomes:  The resulting knowledge will impact on the decision making of those commissioning, planning or implementing Meeting Centres locally, regionally and nationally to accelerate the scale up of Meeting Centres that will sustain into the long term, for the benefit of those living with dementia and those caring for them

Lay Abstract: Supporting people with dementia and their carers to live well is an international health priority. However, social care is struggling with demand and people living with dementia in the UK will double by 2040. There are big gaps in the support available to help people cope with the condition and support has been described as a post-code lottery.  Meeting Centres are local social clubs (3 days per week) for people and families affected by dementia. The first Meeting Centres opened in the UK in 2015. There is good evidence that they help people cope better. They are set up and run by community groups, funded by members  subscriptions, fundraising and grants. Meeting Centres are low-cost and provide accessible on-going social care.     Our team set up and evaluated Meeting Centres in the UK. Thirteen have been set up, with twenty planned by 2021. There is a danger that Centres may struggle to keep going after 1-2 years particularly in rural areas. Our research needs to move from  how to set up a Meeting Centre  to  how to keep one going long-term . We have already undertaken research to develop a theory (set of ideas) about what needs to be in-place to help Centres thrive long-term. We now want to use a research method known as a Realist Evaluation to see whether this is actually the case in rural Meeting Centres.  We will focus on three well-established Meeting Centres that have kept going longer than three years, to see how they have managed to succeed. The Centres include Leominster (rural); Droitwich Spa (semi-rural); and Powys (rural Wales). These are all in rural communities, as these areas are more difficult to sustain compared to towns and cities that often have more resources. We will collect information on the way each Centre is organised and funded and what factors have been important over time. We will interview members (people with dementia and family carers/friends), staff, volunteers, trustees, health and social care staff and volunteers about their views. Importantly, this will also include their views on what they are willing to pay to attend the Centre and the value they place on this.  We will use what we learn to develop user-friendly guidance and materials to best help Meeting Centres survive and thrive in the long-term. We will also use this information to help policy makers and government understand what they can do to improve this situation. Our project will support the growth of more Meeting Centres to support people in desperate need. Service users and members of the public are central in guiding this research. Meeting Centre members and staff will be involved in all stages of our project from design to sharing of findings.

Research Activity Codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health Categories: NEUROLOGICAL