The African and Caribbean Elders (ACE) Study
Research type
Research Study
Full title
Understanding the support needs of African and African-Caribbean people living with dementia, their care partners and families and the impacts of delayed support: identifying inclusive strategies to facilitate timely and culturally appropriate social care support.
IRAS ID
342835
Contact name
Shadreck Mwale
Contact email
Sponsor organisation
University of West London
Duration of Study in the UK
2 years, 5 months, 30 days
Research summary
This study focusses on understanding the experiences of support seeking, from the
perspectives of African and African Caribbean (AAC) people living with dementia (PLWD), their care partners and families, and how their support needs are understood, become recognised, and responded to, by social and community services (Social Workers and Crisis Intervention Teams).AAC PLWD have historically experienced significant discrimination and health inequalities, are at high risk of experiencing failings in care, poor health outcomes, and face significant barriers in accessing health and social care support. We know services recognise the support needs of AAC PLWD far later than White PLWD, meaning they receive support from services only once their dementia is more advanced, when they and their families are unable to cope, are distressed, or need urgent care. This delay means missed opportunities for support at home, increasing the person’s risk of institutionalisation.
Presently, no research has focussed on asking AAC PLWD, their care partners and families about their experiences of accessing support. This knowledge is vital to design and deliver services that recognise and respond to the needs of this vulnerable population.
Study Design:
(1) We will review existing research to identify what is already known about how this population access and are recognised by services. This will be co-produced with AAC PLWD, carers and families, ensuring it focusses on priorities relevant to them.(2) We will talk to AAC PLWD (N=40), their care partners and families over a period of 6 months to understand experiences of support seeking and services.
(3) We will observe team and case meetings of social care professionals (15 per site) and community teams (3 per site) serving these communities (N=120days), to understand how services recognise and assess the needs of AAC PLWD, care partners, and families, and how they make decisions about care.
REC name
West Midlands - Coventry & Warwickshire Research Ethics Committee
REC reference
25/WM/0094
Date of REC Opinion
26 Jun 2025
REC opinion
Further Information Favourable Opinion