BetaEntity Annotation Prototype
← Back to diseases

Annotated abstract

OP12 Exploring community care in an ethnographic study with South Asian families living with dementia in Newcastle upon Tyne

jech · 2026-04-17 · canonical JSON source

9 visible annotations · policy: published · automated confidence ≥ 75.00%

Document resource

Background Community care is central to health and social care policy about dementia, associated with better health outcomes for people living with dementia and carers. This paper puts these policy narratives in dialogue with practices of dementia care within South Asian communities often assumed to care for older adults at home. Despite rates of dementia increasing at a higher rate among minority ethnic communities, these groups remain under-represented in research.Methods This paper is based on qualitative data from 12 months of ethnographic research including participant observation and interviews with 26 South Asian participants, including 20 carers and 6 people living with dementia in Newcastle upon Tyne.Results Belonging in a community based on shared faith and/or ethnicity provided our participants with support for managing memory loss. Rather than bespoke dementia services, support took the form of socialising and exercise groups segregated by gender and informal gatherings based on long-term links between families. These close relationships also resulted in tensions. Relationships within and between families were sometimes strained when carers took on roles that countered established socio-cultural norms, such as women managing financial affairs. However, some carers found ways to reclaim their experiences of caregiving and access support through informal solidarity groups and self-care practices.Conclusion This paper analyses our participants’ established and novel practices of dementia care to provide a critical analysis of community care and its policy implications. It shows how the community can play multiple and conflicting roles – a provider of support, a spectator, and a source of solidarity. These roles are often absent from policy narratives which overlook the nuances of caring in ethnic minority communities. This paper argues that these different manifestations of community care are key to designing policy that accounts for the interconnected social determinants of health, such as ethnicity, gender, and socio-economic status.