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

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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.MethodTo 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.