African and African‑Caribbean (AAC) people living with dementia in the UK are identified as a population at elevated risk of inequitable access to both health and social care services and of poorer health and wellbeing outcomes. Over two decades of literature highlights recurrent patterns: AAC people are more likely to be recognised by services late, present at advanced stages of dementia, experience crisis before accessing care, and face increased risk of premature institutionalisation. A preliminary systematic scoping search for the authors identified only nine UK studies across this period that focused on or included PLWD from AAC backgrounds, indicating a substantial and persistent evidence gap.
Delayed recognition by services and delayed help seeking are associated with crisis events that require urgent acute medical and social care intervention. Crisis episodes are linked to accelerated physical and cognitive decline, unplanned hospital admissions, greater carer burden and higher likelihood of institutionalisation. These dynamics may further entrench inequities for AAC PLWD following hospital discharge and make timely, appropriate social care access especially critical.
The study aims to examine experiences of AAC PLWD, their care partners and families in accessing social care services and support, and to identify inclusive strategies to facilitate timely social care access. Specifically, the research seeks to understand how delayed recognition and delayed support‑seeking affect the trajectories of care, and to co‑produce findings with AAC PLWD, their care partners and families that can inform service improvement.
The protocol adopts an intersectionality theoretical framework to attend to overlapping social positions and structural factors that shape experiences of access, recognition and support. This framework underpins sampling, data collection and interpretation to ensure attention to multiple axes of advantage and disadvantage influencing AAC PLWD and their families.
A flexible exploratory sequential multi‑method design is proposed. The work is co‑produced with AAC PLWD, care partners and families and combines four complementary components: an evidence synthesis using JBI meta‑aggregation, narrative interviews, ethnographic fieldwork within Adult Social Care teams, and artistic workshops. The study is presented as a protocol: no primary data are reported here. Ethical approval for the research has been obtained.
The first component is an evidence synthesis using the Joanna Briggs Institute (JBI) meta‑aggregation approach, conducted in collaboration with AAC PLWD, care partners and families. The synthesis will collate and synthesise existing evidence about experiences of support‑seeking among AAC PLWD and their networks in the UK. As this is a protocol, the article reports intention and method rather than results. Specific inclusion criteria, search strategies and synthesis steps are not detailed in the source beyond the statement that a JBI meta‑aggregation will be used and that synthesis will be co‑produced with community members.
The study will conduct narrative interviews involving three sequential interview encounters with each recruited person living with dementia. The plan is to interview 40 AAC PLWD in total (n = 10 per site across four sites). Opportunities are provided for dyadic interviews which include care partners and family members alongside the person living with dementia. The sequential design aims to capture experiences over time, support building rapport, and enable more in‑depth, contextualised accounts of help‑seeking, access to services, and impacts of any delays.
Ethnographic fieldwork is scheduled across four Local Authority sites within Adult Social Care teams, with approximately 30 days per site. This fieldwork intends to provide insight into institutional and organisational processes and cultures, staff practices, and staff engagement with PLWD. The ethnography will examine how organisational procedures and local cultures may shape recognition, referral and offer of social care supports to AAC PLWD and their families.
Artistic art workshops are included as a methodological component to facilitate diverse participant voices and to support meaningful engagement for AAC PLWD who are at increased risk of isolation. These workshops aim to provide alternative means of expression and participation beyond verbal interviews, broadening inclusivity in data generation and co‑production.
The protocol notes that ethical approval has been obtained. This is a study protocol and therefore reports no primary data. The authors state that some qualitative data might be made available on study completion only if anonymisation procedures can guarantee participants are not identifiable; if anonymisation is not possible, those data will not be made publicly available because of risks of identification. The study is funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research Programme (Award ID: NIHR160824). The authors report no competing interests.
Planned dissemination includes peer‑reviewed publications, conference presentations and freely available resources for health and social care professionals, third‑sector partners, people living with dementia and their care partners. As a protocol, the article outlines planned methods and rationale but does not report study findings. Specific analytic procedures, inclusion criteria for the evidence synthesis, interview schedules, or detailed ethnographic sampling frames are not fully reported in the source text of this protocol summary. The protocol emphasises co‑production with AAC communities to inform inclusive strategies for facilitating social care access and reduce the harms associated with delayed support.