Exploring the Experiences of Ethnic Minority Informal Caregivers Looking After Older Adults with Dementia and Neurological Conditions

Elmi, Asha (2025) Exploring the Experiences of Ethnic Minority Informal Caregivers Looking After Older Adults with Dementia and Neurological Conditions. Doctoral thesis, University of East Anglia.

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Abstract

Background: The increasing global prevalence of neurological conditions, such as dementia, poses significant challenges for healthcare systems. Within this context, informal caregivers play a crucial role in providing long-term care. Research indicates ethnic minority caregivers often provide more intensive and prolonged care compared to their White British counterparts. However, they are less likely to self-identify as "carers" or seek formal support services. This reluctance is often attributed to cultural norms, a strong sense of familial duty, and systemic barriers within healthcare services. Additionally, existing research often homogenizes the experiences of ethnic minority caregivers, failing to account for the diverse influences of migration histories, cultural practices, and socioeconomic contexts. African and Caribbean communities, which represent a significant portion of the UK's Black, Asian, and Minority Ethnic (BAME) population, exemplify this complexity.

Aim: This thesis explores ethnic minority informal caregiving through two studies: A systematic review synthesizing the experiences of ethnic minority informal caregivers for individuals with neurological conditions in Europe. An empirical qualitative study investigating how African and Caribbean caregivers in the UK conceptualize dementia and navigate support systems.

Method: The systematic review employed thematic synthesis to analyse studies on ethnic minority caregivers across Europe. The empirical study used semi-structured interviews, analysed through reflexive thematic analysis, to explore how African and Caribbean caregivers construct meaning around dementia and navigate support services.

Results: The systematic review included 18 studies and identified three key themes (1) Caregiving as an identity reinforcer, (2) Balancing identities, expectations, and traditions, and (3) Fulfilment and reconciliation of historic and current life narratives. The empirical study included 8 semi-structured interviews and revealed three interrelated themes: (1) Cultural and generational interpretation of dementia, (2) Love, duty, sacrifice and coping with caregiving role and, (3) Negotiating and advocating for support.

Conclusion: The findings highlight a generational shift in how African and Caribbean caregivers understand dementia and access support. Ethnic minority younger caregivers across Europe navigate tensions between traditional caregiving values and Western healthcare norms, shaping an insider/outsider identity. Both the systematic and empirical studies suggest that caregiving serves as a space for identity preservation within these communities. This research highlights the need for culturally competent dementia care that considers the wider system and challenges the oversimplification of ethnicity in caregiving studies. It advocates for an intersectional approach in research and policy, recognizing the interplay of ethnicity, migration, and identity in caregiving experiences.

Item Type:	Thesis (Doctoral)
Faculty \ School:	Faculty of Medicine and Health Sciences > Norwich Medical School
Depositing User:	Chris White
Date Deposited:	23 Oct 2025 12:54
Last Modified:	23 Oct 2025 12:54
URI:	https://ueaeprints.uea.ac.uk/id/eprint/100750
DOI:

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