Sustaining locally-driven social care for those affected by dementia: A realist evaluation of successful Meeting Centres
Award Number
NIHR201861Programme
Research for Patient BenefitStatus / Stage
ActiveDates
1 April 2021 -1 March 2023
Duration (calculated)
01 years 11 monthsFunder(s)
NIHRFunding Amount
£402,399.00Funder/Grant study page
NIHRContracted Centre
University of WorcesterPrincipal Investigator
Dr Shirley EvansPI Contact
shirley.evans@worc.ac.ukPI ORCID
0000-0001-6158-1433WHO Catergories
Models across the continuum of careDisease Type
Dementia (Unspecified)CPEC Review Info
| Reference ID | 20 |
|---|---|
| Researcher | Reside Team |
| Published | 12/06/2023 |
Data
| Award Number | NIHR201861 |
|---|---|
| Status / Stage | Active |
| Start Date | 20210401 |
| End Date | 20230301 |
| Duration (calculated) | 01 years 11 months |
| Funder/Grant study page | NIHR |
| Contracted Centre | University of Worcester |
| Funding Amount | £402,399.00 |
Abstract
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
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.