Ethnographic Dementia Diagnosis Study
Research type
Research Study
Full title
Ethnographic study of pathways to dementia diagnosis for ethnic minorities: barriers and facilitators in current Memory Assessment Services
IRAS ID
364619
Contact name
Hina Khan
Contact email
Sponsor organisation
University of Sheffield
Duration of Study in the UK
0 years, 11 months, 2 days
Research summary
People from minority ethnic communities, predominantly South Asian and Black families, are less likely to receive a timely diagnosis of dementia. They often experience barriers such as language difficulties, stigma, cultural beliefs about ageing, and limited awareness of support services. These delays mean that people may only reach the Memory Assessment Service (MAS) once their symptoms have significantly worsened, reducing the benefits of early treatment and care.
This study will explore these issues in detail by following real individuals as they navigate their diagnostic journey within the NHS. The research will focus on how families make sense of memory problems, what happens during appointments, and how communication, culture, and service design influence understanding and decision-making.
The project has three parts. First, a review of existing studies will summarise what is already known about why diagnosis can be delayed in minority ethnic groups. Second, a series of ethnographic case studies will observe the experiences of around 18–20 people from South Asian and Black backgrounds as they attend memory clinic appointments. The researcher will take notes, observe discussions (with consent), and discuss the findings afterwards with patients, family members, and clinicians to understand different perspectives. Finally, community focus groups will bring together residents, carers and community organisations to discuss the findings and co-produce practical recommendations for improvement.
By combining these different sources of evidence, the study will show how both cultural and service factors contribute to delays in diagnosis. The goal is to help NHS services design more inclusive, culturally sensitive and accessible memory assessment pathways, ensuring that everyone has a fair opportunity for early diagnosis, treatment, and support.
REC name
London - Camberwell St Giles Research Ethics Committee
REC reference
26/PR/0071
Date of REC Opinion
16 Feb 2026
REC opinion
Favourable Opinion