Diversity in dementia research

Not everyone responds to treatments and medicines in the same way. For example, sex differences could play a role in how people respond to a treatment. If a drug is mainly tested on men, we cannot be sure how well it works for women, and whether women would experience different side effects to men.  

Who is likely to be under-represented in dementia research? 

Some communities are significantly under-represented in research. These include:

• People from diverse ethnic and cultural backgrounds.
• People from lower socio-economic backgrounds.
• People living in remote and rural communities.

Why is participation harder for some people?

Barriers to research participation can be varied and can depend on individual circumstances. 

These are some common barriers that prevent people from taking part in research:

• Distance to research centre.
• Transportation costs to go to research facilities or appointments.
• Lack of a suitable study partner.
• Time-commitment needed to participate in the study.
• Medical mistrust.
• Not wanting to take an experimental medicine or give additional samples as part of a study. 

How can we increase diversity in dementia research?

A great example of Alzheimer’s Society working to increase diversity in research participation is Team Sahara, in Greater Manchester.

Sahara means ‘support’ in Urdu, and the Dementia Advisers in Team Sahara, who are all from a South Asian background, are culturally sensitive to the needs of South Asian communities. 

There are services available but people in our community often don’t access them because of language and communication barriers, accessibility and because they are not culturally appropriate.

Members of Team Sahara are now training to be ‘research champions’, raising awareness of opportunities to participate in dementia research within the communities they support.

A leaflet translated into Urdu, has since been produced for those members of the community where English is not their first language.

We know there is much more work to do, and Alzheimer’s Society continues to work with others to drive the changes we need to see for everyone affected by dementia, so that no one is left behind.