Funder: National Institute for Health and Care Research
DOSTIA’s directors have taken an important step in championing inclusive dementia research by completing the NIHR Research Ready Communities programme and becoming research champions for their communities. This builds on DOSTIA’s existing work with South Asian families affected by dementia and strengthens its role as a bridge between underserved communities and the research world.
What is the Research Ready Communities programme?
The NIHR Research Ready Communities work was developed to help the research system build better, more respectful relationships with communities that are often under-served by health and care studies. It provides practical tools and learning on how to co-produce research, share power, and design studies with communities rather than for them, especially when people have previously had little or no contact with research. The programme has been used to support local partnerships where community organisations and researchers learn together and test new, fairer ways of involving people in research.
What the Community Engagement Toolkit offers
The NIHR Community Engagement Toolkit that underpins this work sets out ten guiding principles for building inclusive, sustainable partnerships between researchers and diverse communities. It focuses on listening first, sharing information clearly, being transparent about expectations and benefits, and creating opportunities for communities to shape research priorities and methods in ways that work for them. The toolkit is aimed at researchers and community groups who want to co-develop grant applications and projects that are rooted in local realities, not just academic ideas.
DOSTIA directors as research champions
By taking part in this programme, DOSTIA’s directors have developed skills and confidence to act as research champions within South Asian and wider ethnic minority communities affected by dementia. This includes:
- Understanding how research is developed and how communities can influence it from the earliest stages, including funding bids and study design.
- Learning how to use engagement methods and tools that are culturally sensitive and accessible, particularly for people who may not have English as a first language or may be wary of research.
- Being able to advocate for their communities when working with universities, the NHS and other research partners, ensuring that involvement is meaningful, properly resourced and sustained.
These roles sit alongside DOSTIA’s existing work to raise dementia awareness, reduce stigma and provide support, creating a stronger, more research-literate leadership that can open doors for community members to shape studies that impact their lives.
Why this matters for South Asian communities
People from South Asian backgrounds remain less likely to be offered or to take part in dementia research, even though they face higher risks and often poorer experiences of care. Research champions who are trusted, culturally informed and rooted in their communities are vital for changing this picture, because they can explain what research is, challenge myths, and ensure that opportunities are communicated in relevant languages and settings.
Through the Research Ready Communities programme and the Community Engagement Toolkit, DOSTIA’s directors are now better equipped to help co-design future dementia studies that reflect South Asian priorities, whether that is earlier diagnosis, culturally appropriate support, or fair access to new treatments. This aligns directly with DOSTIA’s mission to improve equity in dementia care and ensure that South Asian voices are central to shaping the research, services and policies of the future.
