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.

Aims

To understand the experiences of African and African Caribbean people living with dementia (AAC PLWD) seeking support from Adult Social Care. Our goal is to improve how services recognise and support AAC PLWD. Background

Research has traditionally grouped ‘minority ethnic communities’ together,1,9 failing to recognise difference and diversity,9,21 reinforcing stereotypical narratives2,15,18,22,23 for access to services. Research has not addressed the specific needs of AAC PLWD. AAC PLWD are the population least likely to be recognised by services.2,3,11,23-27 Experiencing historical discrimination and health inequalities, including failings in care,28,29 poor health outcomes,30- 34 and barriers accessing health and social care support.1,11,12,14,18,24,25,33 AAC PLWD are typically only identified by services at ‘crisis’,2,3,11,23- 27,35,36 when their dementia has advanced,25,36 requiring urgent hospital admission and social care intervention.

Potentially avoidable hospital admissions at crisis perpetuate inequalities, 37,38 with AAC PLWD at significantly higher risk of prolonged admissions and institutionalisation.39-45 Design

Mixed methods using flexible exploratory sequential design46 integrating evidence synthesis (co-produced meta-aggregation) and qualitative methods: case studies (narrative interviews), ethnography (observations, in-situ interviews, documentary analysis) and co-produced translation. Intersectionality

An Intersectional theoretical framework will examine how intersecting power relations across multiple and layered identity positions are impacted by multiple, layered, forms of discrimination.47,48 Methods

Objective (1): evidence synthesis meta-aggregation of AAC PLWD findings embedded within studies grouping ‘ethnic minority communities’, co-produced with AAC PLWD, to identify what is known of service access and experiences.

Data collection (Objectives 2&3): 4 months in each Local Authority and Community Health Trust (4 sites) delivering local outreach with partner community organizations and Champions, to support AAC PLWD recruitment.

• Objective (2): Case studies (n=10 per site, total=40) of AAC PLWD, via narrative interviews (3xinterviews) supporting empowerment (total: 120 narrative interviews). Artistic practice to include people living with advanced or rare dementias to support communication.

• Objective (3): Ethnography of Adult Social Care Teams (30 days each site) across care pathways: (a) ‘front door service’, (b) services for existing cases, (c) long-term case management teams. Shadowing professionals, observing meetings (Total: 120 days/shifts). • Objective (4) co-produce analysis and outputs with AAC PLWD Steering group, PLWD and communities.

PPI

Our AAC PLWD steering group identified this research priority, co-producing this proposal. Many felt anger at being ignored and reported lack of understanding of needs. Dissemination

Deliver open access guidance (podcasts, audiobooks, short films, and downloadable documents) on (a) improving outreach, recognition, and early detection (b) updating existing needs assessment tools (c) providing culturally appropriate support, (d) promoting equality, making reasonable adjustments to services. Delivering training (masterclasses and online) to practitioners caring for AAC PLWD.

Our goal is to ensure this vulnerable population has better access and experiences of health and social care services and are supported in living well with dementia in their own homes