A Review of Qualitative Research of Perception and Experiences of Dementia Among Adults From Black, African, and Caribbean Background: What and Whom Are We Researching?

Moïse Roche,Claudia Cooper,Jesutofunmi Aworinde,Paul Higgs

doi:10.1093/geront/gnaa004

Moïse Roche, Claudia Cooper + Show 2 more

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https://doi.org/10.1093/geront/gnaa004

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Abstract

Background and ObjectivesBlack, African, and Caribbean (BAC) families are disproportionately affected by dementia but engage less with services. Studies reporting their experiences of dementia have tended to aggregate people from diverse backgrounds, without considering the impact of this diversity, or researchers’ ethnicities. We investigated participants’ and researchers’ ethnic identities, exploring how this relates to findings.Research Design and MethodsWe searched electronic databases in September 2018, for qualitative studies exploring how participants of Black ethnicity understand and experience dementia and dementia care. We reported participants’ and researchers’ ethnicities, and meta-synthesized qualitative findings regarding how ethnicity influences experiences and understanding of dementia.ResultsTwenty-eight papers reported 25 studies; in United States (n = 17), United Kingdom (n = 7), and Netherlands (n = 1). 350/492 (71%) of participants were in U.S. studies and described as African American; participants in U.K. studies as Caribbean (n = 45), African/Caribbean (n = 44), African (n = 28), Black British (n = 7), or Indo-Caribbean (n = 1); and in Netherlands as Surinamese Creole (n = 17). 6/25 (24%) of studies reported involving recruiters/interviewers matching participants’ ethnicity; and 14/25 (56%) involved an author/advisor from a BAC background during analysis/procedures. We identified four themes: Dementia does not relate to me; Inappropriate and disrespectful services; Kinship and responsibility; Importance of religion.Discussion and ImplicationsStudies were mostly from a U.S. African American perspective, by researchers who were not of BAC background. Themes of dementia diagnosis and services feeling less relevant to participants than the majority population resonated across studies. We caution against the racialization of these findings, which can apply to many differing minority groups.

Highlights

IntroductionAfrican, and Caribbean (BAC) families are disproportionately affected by dementia but engage less with services
Background and ObjectivesBlack, African, and Caribbean (BAC) families are disproportionately affected by dementia but engage less with services
Themes of dementia diagnosis and services feeling less relevant to participants than the majority population resonated across studies

Summary

Introduction

African, and Caribbean (BAC) families are disproportionately affected by dementia but engage less with services Studies reporting their experiences of dementia have tended to aggregate people from diverse backgrounds, without considering the impact of this diversity, or researchers’ ethnicities. Dementia age-standardized rates are observed to be consistently higher in BAC ethnic groups than in other minority populations (Mehta & Yeo, 2017) and the majority population (Adelman, Blanchard, Rait, Leavey, & Livingston, 2011; Mayeda, Glymour, Quesenberry, & Whitmer, 2016) Despite this increased risk, U.K. Black older adults are less likely to receive a timely diagnosis or support and treatment for dementia (Adelman et al, 2011; Pham et al, 2018; Tuerk & Sauer, 2015). This apparent inequality in dementia service provision has led to a burgeoning of research into how BAC families understand dementia and experience dementia care

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