Intersecting social relations of care: a protocol for an ethnographic and interview study with South Asian people ageing in place with dementia

Abstract

Introduction: People living at home with dementia are often cared for by family members, especially those from minority ethnic groups. Many people living with dementia from minority ethnic communities face barriers to accessing formal care. However, there is a paucity of dementia research, which foregrounds diversity within minority ethnic populations. This study, conducted between July 2024 and August 2026, will explore the diverse care experiences of South Asian people living with dementia. Conducted across four sites (Newcastle, Nottingham, Birmingham and London), it aims to understand how inequalities related to ethnicity intersect with other factors (eg, gender, age and class) to shape the dementia care experiences of people living in South Asian communities and apply this learning to explore how public policy and care systems could be improved to reduce health and social inequalities.

Methods and analysis: In Newcastle, ethnographic research will be undertaken with up to 20 people living with dementia (or with memory concerns) in South Asian communities for a period of 12 months. The lengthy research period will enable a deep understanding about how experiences change as dementia progresses over time. In Nottingham and Birmingham, semi-structured interviews and/or focus groups will be conducted with up to 30 people living with dementia (or with memory concerns) in South Asian communities. This will enhance the data generated via the ethnographic research. Analysis will follow the principles of reflexive thematic analysis and will involve identifying themes and synthesising and theorising the data. Following this, findings will be reflected upon in 4-6 task groups convened in London, Nottingham and Newcastle with practitioners from health and social care, voluntary organisations or faith groups involved in dementia care. Task groups will focus on developing practical goals based on the research findings.

Ethics and dissemination: Ethical approval for this study has been granted by Newcastle University Faculty of Medical Sciences Ethics Committee (Reference: 2773/43721). Findings will be disseminated to academics, practitioners, policymakers and members of the public via a range of channels including conferences, peer-reviewed publications, lay reports, leaflets and non-written formats such as animated videos.

Keywords: Aging; Caregivers; Dementia; Health Equity; QUALITATIVE RESEARCH.