Black, Asian and minority ethnic communities and dementia research

What are the challenges being faced by BAME communities?

It is not always clear who we are referring to when we talk about ‘BAME communities’.  
 
This term includes many different ethnicities, cultures and religions. Like any other community these groups are dynamic and change over time and through generations.   

The challenge for dementia care providers, practitioners and policy makers is adapting their approach to best support a more inclusive structure. 

We still have a lot to learn about the full impact of dementia in BAME communities and how best to offer appropriate support.  

Existing research to answer these questions is limited. This is partly due to a lack of funding for research projects that allow for enough time and resource to successfully reach out to and work with a range of communities.  

Facts and figures

• 92 per cent of over 65 year olds in the UK are classified as white British.
• 3 per cent of people with dementia are from BAME communities – around 25,000 people. This number is expected to double by 2026 with the steepest increase expected in South Asian communities. 
• Research suggests BAME communities often face delays in dementia diagnosis and barriers in accessing services.

Through Join Dementia Research, an online register that brings together researchers and study participants, BAME groups are woefully under represented which the team at National Institute of Health Research are working to change. This effect is complicated by the fact that, although prevalence of dementia is higher in some BAME groups, they are also less likely to engage with dementia services. 

This means fewer opportunities to access research participation, perhaps due to a delay in receiving a diagnosis, or a tendency to use dementia services at a much more advanced stage of the condition.  

Expanding our understanding of dementia in the BAME communities

We are in urgent need of research exploring the experiences of different BAME communities in order to make appropriate cultural adaptations to interventions and services. This includes research into taking part in research, experiences of diagnosis, access to dementia care and treatments. We welcome funding applications from researchers that address these under-researched areas.  
 
Collaboration will be key to driving this research forward. Despite the relatively small amount of published literature focusing on dementia in the BAME community, developing a registry of studies and their aims could go a long way to better using the knowledge we have collected.  

Steps for the research community

Although significant steps are being made to include BAME groups in research, there is more the research community can proactively do to improve our understanding of these groups so that we can offer better support.

• All research studies should take steps to be as inclusive as possible, including in how research is advertised – using diverse images and culturally specific information. 
• Public involvement in research studies should include a range of BAME representatives. We are working to increase the diversity of our own network of Research volunteers.
• As a research funder, it’s vital we and others recognise that recruiting individuals from BAME communities takes additional time and money and this should be considered when awards are made.
• Funders should ensure that there is a diverse range of peer reviewers assessing research applications, and that reviewers are knowledgeable about research into people with dementia from BAME communities.
• We know BAME communities are underrepresented as participants in research studies so service managers who engage with and deliver services to ethnic minorities could be key to recruiting people to studies or to the Join Dementia Research platform. 

Alzheimer’s Society BAME research

We have supported a number of research studies that focus on BAME communities and hope to expand this area of our work in the future:

• Professor Paul Higgs at University College London is exploring how dementia services can meet the needs of Black African and Caribbean people.
• At the University of Bradford, Professor Jan Oyebode is working to understand how African-Caribbean and Irish communities view and cope with dementia, and developing an intervention that has culturally relevant examples and scenarios. 
•  Dr Sahdia Parveen at the University of Bradford is investigating the role of obligation, willingness and preparedness for caregiving within South Asian communities.
• Expanding the IDEAL cohort to include the perspectives of those from South Asian and Caribbean communities who were underrepresented in the original cohort.
• We are currently funding Dr Naaheed Mukadam at University College London, who aims to explore dementia risk in South Asian communities through investigating both genetic risk factors and other risk factors such as blood pressure and diabetes.  

This article was first published in May 2019 and most recently updated in June 2022.