Equity in care and support provision for people affected by dementia: experiences of people from UK South Asian and White British backgrounds

Abstract

ABSTRACT Objectives: To explore the care and support received and wanted by United Kingdom (UK) South Asian and White British people affected by dementia and whether access to it is equitable. Design: Semi-structured interviews using a topic guide. Setting: Eight memory clinics across four UK National Health Service Trusts; three in London and one in Leicester. Participants: We purposefully recruited a maximum variation sample of people living with dementia from South Asian or White British backgrounds, their family carers, and memory clinic clinicians. We interviewed 62 participants including 13 people living with dementia, 24 family carers, and 25 clinicians. Measurements: We audio-recorded interviews, transcribed them, and analyzed them using reflexive thematic analysis. Results: People from either background were willing to accept needed care and wanted competence and communication from carers. South Asian people frequently discussed needing care from someone with a shared language, but language differences could also be an issue for White British people. Some clinicians thought South Asian people had a stronger preference to provide care within the family. We found that preferences for who provides care varied across families regardless of ethnicity. Those with more financial resources and English language have more options for care that meets their needs. Conclusions: People of the same background make differing choices about care. Equitable access to care is impacted by people’s personal resources, and people from South Asian backgrounds may experience the double disadvantage of having fewer options for care that meets their needs and fewer resources to seek care elsewhere.