The EAST-Dem study: Encouraging Access for South Asians to Timely Dementia Diagnosis

BACKGROUND: People from Black and Minority Ethnic backgrounds tend to seek help later in the course of dementia than people from the majority ethnic population. Aim: To develop an intervention to encourage people from South Asian backgrounds to seek help earlier for memory problems and test its acceptability and feasibility. Methods: I systematically reviewed the literature and analysed routinely collected data to find interventions which improved dementia diagnostic rates. I then completed my qualitative study with South Asian community members to inform the development of an intervention to encourage earlier help seeking for memory difficulties by South Asian people. After piloting, I tested the intervention in a pilot cluster randomised controlled trial (RCT) with South Asian patients from participating GP practices. Primary outcomes were: 1. Feasibility - recruitment and retention rates 2. Acceptability - rating on a Likert scale. Results: No trials to increase dementia diagnosis rates have been successful, but rates increased significantly after implementation of the English National Dementia Strategy. South Asian community members said that understanding, through a story, that dementia was a physical illness, would normalise dutiful family members seeking interventions. I developed a bilingual leaflet and trilingual DVD with this content. I recruited and randomised 8 GP practices; 78/102 (76%) patients who allowed me to contact them, consented to the study (37 treatment-as-usual and 41 intervention). 76 (97%) participated in follow-up. 37/41 (90%) who received the intervention found it acceptable. Conclusion: I designed the first culturally-appropriate intervention to encourage help-seeking for dementia in the South Asian population. Participants found it acceptable. It was feasible to recruit and follow-up participants. A full-scale RCT would require a very large number of GP practices to participate so is likely to be expensive. It may be preferable to make this acceptable and simple intervention available and disseminate it