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

痴呆症是一种影响记忆、行为、身心健康的严重疾病。照顾患有痴呆症的亲友的人也会受到社会、经济和健康方面的影响。英国的研究表明，加勒比黑人比英国白人更容易患痴呆症。然而，他们不太可能使用记忆诊所或痴呆症治疗中心等服务。造成这种情况的原因包括：1)缺乏对痴呆症的认识2)加勒比社区的耻辱3)认为现有服务不能满足其文化或宗教需求4)担心保健和社会护理方面的歧视。随着上世纪五六十年代移民到英国的“疾风一代”（Windrush Generation）的人逐渐变老，英国的加勒比老年人越来越多。因此，了解他们的痴呆症需求以及如何最好地满足这些需求非常重要。研究发现，加勒比人倾向于在他们的社区内寻求帮助，比如通过教堂，而不是NHS或其他服务。黑人占多数的教堂在照顾社区成员方面有着悠久的历史，当人们需要帮助时，往往是第一个求助的地方。我们采访了加勒比地区痴呆症患者的亲属。他们说，需要更好的支持和建议，让痴呆症患者生活得更好，黑人占多数的教堂可以帮助满足这一需求。然而，教会领袖目前还没有这样做的经验和知识。这可能意味着痴呆症患者及其家人可能会感到不那么受欢迎。这个项目的目的是：1)了解加勒比地区人们对痴呆症患者生活的看法，以及对痴呆症患者友好的教堂的外观和感觉。2)开发资源，帮助黑人占多数的教会成为“痴呆症友好”的“社区中心”，痴呆症患者、他们的护理伙伴和社区成员可以在那里寻求帮助和建议。这将包括：i。编写适合加勒比地区痴呆症患者及其家庭的文化培训和教育材料。二、教育教会领袖有关痴呆症的知识，包括如何发现痴呆症的迹象，并帮助家庭及早诊断和更好的护理。让痴呆症患者及其家人充分参与社区中心，这样他们就可以向其他人展示“与痴呆症一起生活”是什么样子。3)决定哪些结果对痴呆症患者、他们的护理伙伴、教会领袖和服务提供者最重要，以及如何最好地衡量这些结果。为了做到这一点，我们将看看之前的研究表明如何使教堂对痴呆症患者更友好。看看我们如何在这一领域超越现有的工作，例如阿尔茨海默氏症协会和宜居性，包括与文化相关的方法，教会可以超越欢迎痴呆症患者的服务，成为社区支持中心。我们将使用创造性的方法与痴呆症患者、他们的照顾者、教会和社区成员合作，为教会领袖和成员设计和提供痴呆症培训和教育。我们会询问痴呆症患者对他们意味着什么，并考虑如何衡量这些结果。潜在的应用和好处主要的好处将是提供安全、受欢迎的社区中心，痴呆症患者、他们的护理人员和社区成员可以在那里获得有关痴呆症的信息和支持。我们希望这将使痴呆症患者能够更快地获得诊断和其他健康和支持服务，并使家庭减轻压力。我们还致力于提高加勒比社区对痴呆症的认识，减少耻辱感。我们的目标是，我们开发的资源和模式可以被其他信仰团体用来支持他们的成员和更广泛的当地社区。

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.