“Bridging the Gap”, a communitycentric initiative designed to improve the inclusion of South Asian communities in dementia clinical trials across the UK.
Sponsored by Roche, May 2025 – ongoing.
DOSTIA is delighted to be a partner in this very important work which directly reflects DOSTIA’s commitment to ensuring that South Asian people affected by dementia are not only supported in daily life, but also represented in the research that shapes future treatments and care.
Why Bridging the Gap is needed
Alzheimer’s disease and dementia are projected to rise sharply among ethnic minority communities in the UK, with some estimates suggesting around a 600% increase in prevalence among these groups by 2051. South Asian communities are expected to experience some of the steepest increases, yet they remain significantly underrepresented in dementia clinical trials, which limits how relevant and effective new interventions are for their cultural contexts, languages and lived experiences.
On top of this, South Asian people in the UK are more likely to have vascular risk factors such as diabetes, hypertension and cardiovascular disease, are often diagnosed at a younger age, and die on average three years earlier than White British people with dementia. Despite this higher burden, a review of dementia trials was unable to identify a single interventional clinical trial specifically involving the UK South Asian population, highlighting a major equity gap.
What the initiative aims to do
Bridging the Gap, sponsored by Roche, aims to define effective, culturally sensitive strategies for recruiting and retaining South Asian participants and their study partners in UK dementia clinical trials. The goals include understanding barriers and facilitators to participation, embedding community-informed changes into the Roche trontinemab programme and future studies, and developing a toolkit or model that can be used by researchers and clinical trial sites across the country.
In the longer term, the model developed with South Asian communities is intended to be adapted for other underserved groups, including Black and Caribbean communities, helping to address wider inequalities in dementia research.
DOSTIA’s role in the partnership
The initiative is being delivered in Wolverhampton between May 2025 and April 2026, in collaboration with DOSTIA as an established, trusted dementia support organisation. DOSTIA – meaning “friendships” in Punjabi, Hindi and Urdu – supports South Asian people who have a diagnosis, are worried about their memory, or care for a family member living with dementia, making it a natural partner for communitycentred research.
DOSTIA works alongside Advancing Inclusive Research Experts Dr Karan Jutlla and Dr Rashi Arya to:
- Co-host community dementia awareness events that provide bilingual information on dementia, brain health, living well and the importance of research.
- Help identify realworld barriers and facilitators to trial participation from the perspective of South Asian families, including issues of trust, language, culture, and past experiences with services.
- Connect community members to a forthcoming public/patient advisory board where they can advise directly on trial design, recruitment strategies and how best to support inclusive participation.
What we are learning together
Early learning from Bridging the Gap reinforces a principle that sits at the core of DOSTIA’s work: building trust takes time and relationships, not just invitations. An attempt to launch a second community-based awareness event without strong prior engagement showed that simply “offering” an event is not enough; people need to know and trust who is asking before they feel comfortable taking part.
Refocusing activity around DOSTIA – where relationships and credibility already exist – proved crucial to the project’s success and underlined that pharmaceutical companies must collaborate closely with trusted experts embedded in communities to meaningfully “bridge the gap”. This partnership model allows engagement and recruitment strategies to be genuinely culturally informed and grounded in community realities, rather than driven solely by regulatory and corporate constraints.
How this supports DOSTIA’s mission
By contributing to Bridging the Gap, DOSTIA is helping to ensure that South Asian communities are no longer an afterthought in dementia clinical research, but central to how future trials are designed and delivered. The initiative strengthens DOSTIA’s wider aims to reduce stigma, improve access to support and information, and build fairer, more culturally competent dementia pathways for South Asian families in the West Midlands and beyond.
