Involving Minority Ethnic Communities and Diverse Experts by Experience in Dementia Research: The Caregiving HOPE Study

The aim of this paper is to describe a person-centered and culturally sensitive approach to working with minority ethnic communities, involving carers, people living with dementia, members of the public and carer support workers, as used in the Caregiving HOPE study. The involvement of these experts was influenced by each individual's needs and desires, which changed over the course of the study. The approach to clinical research design and involvement had a significant impact on successful recruitment and engagement at a national level, but it required greater flexibility and consideration of financial and time costs. 

Parveen S, Barker S, Kaur R, et al. Involving minority ethnic communities and diverse experts by experience in dementia research: The Caregiving HOPE Study. Dementia 2018 Nov;17(8):990-1000.