Understanding support needs of African and African-Caribbean people living with dementia, their care partners and families, and impacts of delayed support: Identifying inclusive strategies to facilitate social care support: A study protocol

Abstract

African and African-Caribbean (AAC) people living with dementia (PLWD) are a population at high risk of inequitable access to health and social care services, and have poor health and wellbeing outcomes. Research suggests they are likely to experience failings in care, be recognised by services late and at points of crisis, and are at increased risk of institutionalisation. This research aims to examine the experiences of AAC PLWD, their care partners and families of accessing social care services and support. Employing an intersectionality theoretical framework, this study will use a multi-method, flexible exploratory sequential design. An evidence synthesis using the JBI meta-aggregation approach, co-produced with AAC PLWD, their care partners, and families, will be conducted to synthesise existing evidence on the experiences of AAC PLWD, their care partners’ and families’ of support seeking in the UK. Narrative interviews will involve 3 sequential interviews conducted with 40 AAC PLWD (n = 10 per site), with opportunities for dyadic interviews with care partners and families. Ethnographic fieldwork will be conducted across 4 Local Authority sites within Adult Social Care teams (n = 30 days per site) to provide insight into institutional and organisational processes and cultures, and staff practices and engagement with PLWD. Artistic art workshops will be conducted to facilitate a diverse range of participant voices and support meaningful engagement for AAC PLWD at increased risk of isolation. Ethical approval has been obtained. Dissemination will include peer reviewed publications, conference presentations and free publicly available resources for health and social care professionals, third-sector partners, PLWD and their carer partners.