What is the project about? 

People from minority ethnic groups are very underrepresented within research about memory problems, brain health  and dementia. We would like to change that. This project is one step towards that. 

Not including minority communities in the way research is designed can mean the research does not address topics that are important to people in minority communities. In turn, this reduces the positive impact research could have for those people.

‘Research priority setting’ exercises are often carried out to ask the public what they think are the most important topics to research. A research priority setting exercise for dementia and brain health research was done in 2015, but whether the topics identified are important to minority communities is not known.

Dementia is common in the UK and worldwide. Around 250,000 people in the UK from black and ethnic minority communities have dementia. This number is expected to double by 2026. Evidence suggests dementia rates are 22% higher among black people compared to white people in the UK and that black people are more at risk of developing dementia than white people.  People from these communities are more likely than white people in the UK to have a delayed dementia diagnosis, and are less likely to be referred to memory services where a diagnosis of dementia can be given, or ruled out. This is important because opportunities to slow down the disease or offer support  may be missed. Dementia may be stigmatised or misunderstood. There are some steps people can take to look after their brain health and reduce risk of developing dementia, so it is important knowledge about this is shared. 

What did do?

We carried out a ‘research priority setting’ exercise, with a Somali community in Sheffield. 

We worked with a local organisation called ISRAAC (https://israac.org.uk/). They support people of Somali background in Sheffield. Through Israac, we employed two members of the Somali community as ‘community research link workers’ . They recruited participants, interpreted and translated, contributed ideas and helped us develop future research ideas. 

Workshop 1: we invited around 30 community members including some people affected by memory concerns, or other symptoms of dementia. 

We introduced the project and gave a short presentation about brain health, dementia and support available.  Community members were asked to discuss their unanswered questions about these topics.

After workshop 1, we searched the research evidence to see which of the questions raised can or cannot be answered by existing research. We then invited 15 community members to take part in two more workshops. 

Workshop 2: We presented the evidence we found in an easy-to-understand summary. We asked participants to identify the most important topics to them.

Workshop 3:  We asked participants to agree their top priorities for brain health and dementia research. 

We as a team are seeking further research funding based on these priorities. We also want to share the priorities we identified with other researchers, so that future research is inclusive and can benefit UK Somali communities and lead to improved dementia related experiences and services.  

How will we share what we find out?

We will share what we learn about dementia and brain health research priorities for this Somali community in Sheffield. We will also share how we have tried to be inclusive in our approach, and learning gained from our approach. We will share these findings with: 

• other researchers and research funders 

• people running and developing dementia and brain health services 

• the public via social media, local and national events

When is this project running?

We started on 1 September 2024. The project runs until December 2025.

Any questions or for more information please contact:

Becky Field (Lead Researcher), b.field@sheffield.ac.uk