THE EAST-DEM STUDY: ENCOURAGING ACCESS FOR SOUTH ASIANS TO TIMELY DEMENTIA DIAGNOSIS–A PILOT FEASIBILITY AND ACCEPTABILITY CLUSTER RANDOMISED CONTROLLED TRIAL

Abstract

Dementia in the minority ethnic (ME) population is predicted to increase at a rapid rate in the UK. People from ME backgrounds tend to seek help later for dementia. There have been no trials of interventions to encourage earlier help-seeking in people from minority ethnic backgrounds. We aimed to: (1) Test acceptability and feasibility of an intervention to encourage earlier help-seeking for dementia in a pilot cluster randomised trial; and (2) Explore the effect of the intervention on attitudes to help seeking. GP practices were randomised to intervention or control and we sent the intervention with a GP letter to participants in intervention practices and no additional information to those in control practices. Participants self-completed a questionnaire collecting demographic information, as well as personal experiences of memory problems and the APEND questionnaire, which measures attitudes to help-seeking for dementia. Primary outcomes were acceptability (target of 70%), feasibility (target of 70%) and follow-up rates (target of 80%). We also carried out an exploratory analysis of effects on the APEND questionnaire. We recruited eight GP practices and 78 individual participants (37 control, 41 intervention). Feasibility of recruitment was 76% and acceptability 90%. Out of 78 people who completed baseline measures, 76 (97%) completed the follow-up questionnaires. The intervention had no significant effect on either Behavioural Intention (Parameter estimate -0.5, 95% CI -2.2 to 1.2, p=0.56) or Subjective Norm scores (Parameter estimate -0.01, 95% CI -0.95 to 0.93, p=0.99) on the APEND questionnaire. In a post-hoc analysis, in those who had viewed the intervention, the mean difference on the Intention subscale was 1.5 points higher in the intervention group (95% CI 0.1 to 3.1, p=0.037). This is the first trial of a culturally targeted and theory-based intervention to encourage help-seeking for dementia and is acceptable and feasible to deliver in primary care. Our exploratory analysis showed no differences on attitudes to help-seeking for dementia but the study was not powered to do this. Post-hoc analysis indicates the intervention may have an impact on attitudes to help-seeking but this depends on people viewing the materials.