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 will this project do?

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

We will work with a local organisation called ISRAAC (https://israac.org.uk/). They support people of Somali background in Sheffield. Through Israac, we have employed two members of the Somali community as ‘community research link workers’ . They will recruit participants, interpret and translate, contribute their ideas and help us develop future research ideas. 

We know from working with Israac on other projects that some members of this community are interested in brain health and concerned about dementia. 

We will hold three workshops.

Workshop 1: up to 30 community members will be invited. We want to include some people affected by memory concerns, or other symptoms of dementia. 

We will introduce the project and give a short presentation about brain health, dementia and support available. 

Community members will be asked to discuss their unanswered questions about these topics.

After workshop 1, we will search the research evidence to see which of the questions raised can or cannot be answered by existing research. We will then invite 12 community members to take part in two more workshops. 

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

Workshop 3:  we will ask participants to agree their top priorities for brain health and dementia research. These will help us identify research questions for future projects. We then aim to seek further research funding to take one or more of the properties forward into another project.

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

If you are interested in taking part in the workshops, please contact Sahra.Abdi@Sheffield.ac.uk or Muse.Jama@sheffield.ac.uk