Abstract
<ns5:p> <ns5:bold>Research Background and Aim</ns5:bold> </ns5:p> <ns5:p>The EMPATHY Project is a community-led initiative designed to improve access to dementia diagnosis and care for people from Chinese, South Asian, and African-Caribbean communities. Led by Professor Richard Cheston and Emily Choi, the project builds on more than ten years of collaboration between researchers, healthcare professionals, community organisations, people living with dementia, and family carers. Its overall aim is to address persistent inequalities experienced by these three communities in accessing dementia care. The project grew out of earlier work undertaken in Bristol, where research highlighted significant barriers to dementia care including language barriers, culturally inappropriate assessments, and a lack of trust in statutory services. </ns5:p> <ns5:p/> <ns5:p> <ns5:bold>What we did</ns5:bold> </ns5:p> <ns5:p>A central feature of the EMPATHY Project is co-production. Rather than developing solutions on behalf of communities, our team worked alongside people with lived experience of dementia and caring responsibilities. </ns5:p> <ns5:p/> <ns5:p>Phase One of the project focused on understanding the experiences of Chinese, South Asian, and African-Caribbean communities. Through focus groups, interviews, and community events, participants described widespread stigma surrounding dementia, mistrust of health services and difficulties obtaining a diagnosis. Community organisations were consistently identified as trusted sources of support because they provided culturally relevant information, advocacy, and practical assistance. </ns5:p> <ns5:p/> <ns5:p>Building on these findings, Phase Two developed an intervention known as the “EMPATHY letter.” Community researchers worked with individuals experiencing memory difficulties and their families to create a personalised letter describing symptoms, changes in daily functioning, and family concerns. Participants then used the letter to support conversations with their GP. Researchers also helped participants to arrange appointments and navigate the healthcare system. </ns5:p> <ns5:p/> <ns5:p> <ns5:bold>What we found</ns5:bold> </ns5:p> <ns5:p>The EMPATHY letter helped people communicate their concerns more clearly and ensured that GPs had a fuller understanding of their situation. Several participants who used the letter progressed to further assessments and referrals to specialist dementia services. Families also reported that the process helped them discuss memory concerns more openly, reducing uncertainty and encouraging shared decision-making. Even when participants chose not to pursue diagnosis, the conversations generated through the intervention were often described as valuable and reassuring. </ns5:p> <ns5:p/> <ns5:p>Three case studies demonstrated the different ways the intervention could support individuals. One participant successfully obtained a diagnosis and specialist support, another used the process to build family understanding and prepare for future assessment and while a third chose not to pursue diagnosis, the letter enabled important conversations between family members. </ns5:p> <ns5:p/> <ns5:p> <ns5:bold>Conclusion and future plans</ns5:bold> </ns5:p> <ns5:p>Overall, the EMPATHY Project demonstrated that improving dementia care requires more than clinical expertise alone. It requires trust, cultural understanding, strong partnerships with community organisations, and meaningful involvement of people with lived experience. The findings suggest that simple, low-cost interventions such as the EMPATHY letter can help reduce inequalities and improve access to diagnosis, while also highlighting the need for wider system changes to create more inclusive, equitable, and person-centred dementia services.</ns5:p> <ns5:p/> <ns5:p>As a research team, we have made a series of six recommendations to improve dementia services locally. This includes better partnership working, a centre of excellence for dementia care locally and the uptake of the EMPATHY letter into local services. We have arranged meetings with managers from Bristol City council and the NHS. Discussions are ongoing locally about preparing future research applications to build on the learning from the study.</ns5:p>