Dr Natalie Marchant on diversity and inclusivity in dementia research

There are currently an estimated 982,000 people with dementia in the UK, with the condition affecting people from all backgrounds and communities. 

Research led by Professor Naaheed Mukadam (UCL Division of Psychiatry) found that in high-income Western countries, dementia disproportionately affects people from minoritised ethnic backgrounds. In the UK, these groups face up to a 20% higher risk of developing dementia compared to White ethnic groups.

Yet, people from minoritised ethnic backgrounds remain significantly underrepresented in dementia research. This lack of representation hinders our ability to fully understand the condition, provide equitable healthcare, and develop effective treatments.

The underrepresentation of people from minoritised ethnicities is not unique to dementia research. A 2024 survey from Ipsos found that 6 in 10 adults in the UK reported that they would be willing to participate in a clinical trial. However, people from minoritised ethnic backgrounds were significantly less likely to participate, at a rate of 4 in 10.

Ensuring diversity among research participants means findings are more generalisable to the broader population. It also enables the identification of group-specific differences in risk, treatment responses, and care needs – ultimately allowing for more tailored and effective approaches.

As well as aiming for diversity in research participants, diversity among the researchers themselves is also beneficial. By bringing together researchers from different backgrounds, a wider range of perspectives, ideas, and approaches are generated, all of which strengthen the quality and relevance of research.

Dr Natalie Marchant, Associate Professor in the Division of Psychiatry and Chair of UCL’s Research Culture Community Steering Group, has been exploring what can be done to address underrepresentation in dementia research. This project was funded by the UCL Grand Challenges 2023-2024 Special Initiative (Un)equal lives, (un)equal outcomes: visioning the future.

In her focus groups with individuals from minoritised ethnic groups, Dr Marchant found that historical mistrust of clinical trials and experiences of institutional racism are often major barriers to research participation.

Dr Marchant recalls that in one of her focus group sessions, one participant said: “I've heard the word ‘research.’ For some reason I have a negative connotation with it… due to the history of treatment and research that was carried out on Black people... and every time I hear about research being carried [out] into certain things that apply to me, it makes me nervous, and I imagine it may be similar for other people too.”

It should come as no surprise that the historic exploitation of people from minoritised ethnic backgrounds understandably leaves many people reluctant to take part in medical research today.

“Historically, research has followed an extractive model—researchers would collect data or insights for their own study and then depart, often without giving anything back,” Dr Marchant explained, “Participants were referred to as "subjects," highlighting the power imbalance and lack of agency they held in the process. For individuals from minoritised ethnic backgrounds, this dynamic was frequently not just extractive, but also exploitative and harmful. When this legacy is combined with the ongoing experiences of racism reported by these communities in health services, education, and local government, it is understandable that mistrust and reluctance to engage in medical research persist today.”

The focus groups, which included individuals from Black African, Black Caribbean, and South Asian backgrounds who had been affected by dementia, also identified a number of other barriers to participating in research. These included a lack of awareness about dementia and available research opportunities, stigma surrounding mental illness, and language barriers – particularly the requirement for fluency in English in most studies.

To encourage people from minority ethnic backgrounds to join studies, the onus should be on researchers to consider a fresh approach to their recruitment methods. 

Dr Marchant said: “To address these challenges, researchers must begin by investing time in building trust through equitable and sustained community partnerships. Recruitment strategies should be broadened including both online and offline channels, delivered in relevant community languages and with cultural sensitivity. It is also crucial to involve people from minoritised ethnic backgrounds in the research process itself, adapt materials to reflect cultural contexts, and improve researchers’ cultural competency. Just as importantly, the outcomes of research must be shared with the communities involved, in ways that are accessible and meaningful to them.”

Following on from the focus groups, which were held in early 2024, Dr Marchant convened a follow-up workshop. This was delivered in partnership with collaborators from the community, and brought together members of minoritised ethnic communities, researchers, and representatives from research funders and the NHS. The aim was to explore how to increase the involvement of minoritised ethnic communities in dementia research.

Dr Marchant said: “The atmosphere was incredibly energising—there was genuine engagement throughout, which was echoed in the enthusiastic feedback from attendees. A wide range of creative and practical solutions emerged from the discussions. One of the key takeaways for me was the importance of creating more spaces where people from diverse backgrounds and perspectives can come together to share, collaborate, and drive meaningful change.”

Community collaborator Ione Fraser, who had cared for a family member with dementia, said: “It has been an honour working to get minoritised ethnic communities involved in research. It is so empowering to hear that participants want to take ownership of their health and wellbeing and make constructive changes to current practice and support development of research to be more inclusive. I remain passionate and committed to the cause and hope this road map opens pathways to other fields of research to do the same.”

For researchers at the planning stage, who want to ensure their projects represent diverse voices, Dr Marchant offered the following advice: “Researchers must work collaboratively with the communities they aim to involve in their studies – starting from shaping the research question, continuing through the study’s design and implementation, and ensuring meaningful follow-up once the research concludes. This kind of partnership fosters trust, enhances the relevance of the research to those communities, and ultimately leads to greater engagement and participation.”

The lessons from this project are clear: increasing diversity within dementia research, and beyond, will lead to more personalised care and a deeper understanding of the medical condition. This progress brings hope that one day, everyone affected by dementia can look forward to better care and effective treatments.

Photo credit: Layton Thompson Photography & Film

Links

• Dr Natalie Marchant's academic profile 
• The Journal of Alzheimer's Association: A multiperspective investigation of the underrepresentation of minoritized ethnic participants in dementia research and proposed strategies to improve inclusive recruitment practices
• Research culture at UCL 
• UCL's Research Culture Roadmap
• UCL Division of Psychiatry