Key factors influencing post-diagnostic support and care planning for people with dementia from South Asian backgrounds: a systematic review of qualitative studies

TL;DR

This study reviews factors affecting dementia care planning for South Asians in the UK, highlighting cultural, systemic, and policy barriers.

Contribution

The paper introduces a socioecological model to map barriers and propose culturally tailored solutions for dementia care in South Asian communities.

Findings

Cultural stigma and home care expectations hinder uptake of post-diagnostic support.

Language barriers and lack of cultural competence in healthcare systems are significant issues.

Recommendations include community-based interventions and equitable partnerships to improve dementia care.

Abstract

Dementia in minority ethnic groups is on the rise. South Asian people represent 9.3% of the UK population and are the largest minority ethnic (ME) group. Most dementia care in South Asian communities is provided at home by family carers, yet there is low uptake of care planning and post-diagnostic support services. This review explored factors influencing care planning and post-diagnostic support for South Asian people with dementia.

Systematic review and thematic synthesis of qualitative studies exploring care planning and post-diagnostic support experiences and views of South Asian people with dementia, family carers, and health and social care professionals (HSCPs). There were no limits on country or date of publication. Six databases were searched (inception - June 2024) and two reviewers independently screened and quality-appraised studies. Reflexive thematic analysis was used to generate themes, which were then mapped to the Socioecological Model. The review protocol was registered on PROSPERO [Registration number: CRD42023404125].

From 3165 studies found, 2069 were screened (after de-duplication) and 24 studies were included for thematic synthesis. Key influential factors were mapped to one of four levels of a modified version of the Socio-ecological Model (SEM): (1) Individual and community level factors - cultural duty for home care, stigma and misinformation, support networks; (2) Interpersonal level factors - language barriers and person- and family-centred care; (3) Organisational and systems level factors - lack of integrated support, cultural competence, system pressures and institutional discrimination; (4) Structural level factors - socioeconomic and policy considerations.

Recommendations to improve dementia care planning and post-diagnostic support for South Asian communities include (1) Reframing narratives around dementia and help-seeking through culturally-tailored community interventions; (2) Culturally competent, person- and family-centred care; (3) Holistic and integrated support beyond clinical care; (4) Equitable partnership working with South Asian communities to co-produce dementia services.

The online version contains supplementary material available at 10.1186/s12877-026-07064-y.

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