Enabling Caribbean people to live well with dementia: Developing 'dementia-friendly', community hubs with Black Majority Churches

Background
Dementia is a serious condition that affects memory, behaviour, physical and mental health. People caring for relatives or friends with dementia are also affected - socially, financially and health wise. UK research shows that Black Caribbean people are more likely than White British people to develop dementia. However, they are less likely to use services like memory clinics or dementia cafés. Reasons for this include: i) lack of awareness about dementia ii) stigma in the Caribbean community iii) belief that existing services will not meet their cultural or religious needs and iv) being worried about discrimination in health and social care.

There are a growing number of older Caribbeans in the UK as people from the Windrush Generation who migrated in the 1950s and 1960s are ageing. It is therefore important to understand their dementia needs and how best to meet them. Research has found that Caribbeans tend to seek help inside their communities such as through churches, instead of the NHS or other services. Black Majority Churches have a long history of caring for community members and are often the first port of call when people need help. We talked to relatives of Caribbean people with dementia. They said better support and advice on living well with dementia is needed and that Black Majority Churches could help meet this need. However, church leaders currently do not have the experience and knowledge to do this. This can mean people with dementia and their family members may feel less welcome.

The aims of this project are to:

1) Understand Caribbean people's views on what living well with dementia and what dementia-friendly churches would look and feel like.
2) Develop resources to help Black Majority Churches become more 'dementia friendly' be 'community hubs' where people with dementia, their care partners, and community members can go for help and advice. This will include:
i. Developing culturally-appropriate training and education materials designed with Caribbean people with dementia and their families
ii. Educating church leaders about dementia, including how to spot sign of dementia and help families get early diagnosis and better care.
iii. Involve people with dementia and their family members fully in the community hub so they can show others what 'living well with dementia' looks like.
3) Decide what outcomes are most important to people with dementia, their carer partners, church leaders and service providers and how best to measure them.

Method
To do this we will look at what previous research says about making churches more dementia-friendly. Look at how we can go beyond existing work in this area e.g. by Alzheimer's Society and Livability to include culturally-relevant approaches and ways churches can go beyond services that are welcoming to people with dementia, to becoming community support hubs. Using creative methods we will work with people with dementia, their carers, church and community members design and deliver dementia training and education to church leaders and members. We will ask people what living well with dementia would mean for them and consider how we can measure these outcomes.

Potential application and benefits
The main benefit will be to provide safe, welcoming community hubs where people with dementia, their carers and community members can access information about and support for dementia. This we hope will lead to people with dementia accessing diagnostic and other health and support services sooner and to families feeling less stressed. We also aim to improve dementia awareness and reducing stigma in the Caribbean community. Our aim is that the resource and model we develop could then be used by other faith groups to support their members and the wider local community.

Background: Caribbeans have higher dementia prevalence than White British peers; developing symptoms on average 8-10 years earlier (7). Despite greater morbidity, Caribbeans access dementia-related services later in their illness trajectories with more advanced symptoms . Eschewing mainstream services; they tend to be cared for by families, increasing the risk of adverse effects on carer health and wellbeing . Outside the family, Caribbeans seek help from local culturally-aware sources of support such as Black Majority Churches (BMCs) rather than more mainstream dementia services. However, BMCs and church leaders lack appropriate structures, knowledge and experience to support people to live well with dementia or to advise church and community members on dementia. There is currently little understanding of what 'living well with dementia' looks like from Caribbean people's perspectives.

Aim: Co-produce a manualised intervention ("how to resource") for developing dementia-friendly BMCs as 'community hubs' where people with dementia and their families can access information, advice and support to improve wellbeing, reduce social isolation, and ultimately increase access to early diagnosis and timely and appropriate care and support.

Design: Mixed-methods in 3 stages:
1) Systematic literature review to identify the key elements for culturally-appropriate, dementia-friendly church hubs
2) Focus groups with people with dementia (n=6-8) using creative arts-based methods, carers, church leaders, healthcare professionals (n=6-10 per group). to inform what 'living well' with dementia means for Caribbean people and what they feel a community hub should provide.
3) Co-production/design of the intervention and identification of desired outcomes, using Stage 1 & 2 findings

Analysis: Realist synthesis (literature review) and thematic analysis.

Who will benefit from the research and how will they benefit?
1. People with dementia and their carer partners
The primary beneficiaries will be Caribbean people with dementia, their carers and families and members of public who will benefit by having access to more informed support and, ultimately, more timely access to diagnosis and specialist care. Equipping faith leaders to better support the communities they serve coupled with strategies to reduce stigma and social isolation will transform places of worship into community dementia hubs with the potential to improve the wellbeing and quality of life of people with dementia. Evidence also suggests that more accessible support will improve the wellbeing of carer partners by reducing the burden of care associated with untreated illness and lack of support. Developing dementia-friendly churches as community dementia hubs be accessible to the wider community as well as serving church members.
2. Service providers and commissioners
Mainstream services, voluntary section organisations, and policy makers will benefit by being better able to understand and meet the dementia care needs of Caribbean people. Statutory providers will also benefit from the creation of more flexible care pathways. For example, partnering with faith based organisations to develop and deliver community-level interventions will help reduce actual and perceived barriers to accessing specialist care via the NHS and social care, including fears of discriminatory treatment. Establishing community hubs where healthcare professionals can undertake preliminary screening as well as providing education and information will improve engagement and care provision for Caribbean people. This collaborative approach that draws on community assets might also include, for example, church leaders being present when diagnoses are given. Upskilling church leaders to provide culturally-relevant dementia support has the potential to significantly the unmet needs and inequalities currently experienced by members of this community.
Commissioners at local and national levels will subsequently benefit from being able to provide cost-effective, culturally-relevant, accessible and sustainable interventions that keep people with dementia and their families in the heart of their communities - thus reducing social isolation.
Internationally, learning from this study could inform development of low cost but potentially high impact interventions delivered in accessible venues. In Low and Middle Income Countries (LMICs), dementia-friendly places of worship could maximise resources with mental health professionals training lay church leaders to deliver truly holistic dementia care that address spiritual, social and healthcare needs.