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Oxford University Press, The Gerontologist, 5(61), p. e195-e208, 2020

DOI: 10.1093/geront/gnaa004

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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?

Journal article published in 2020 by Moïse Roche ORCID, Paul Higgs, Jesutofunmi Aworinde, Claudia Cooper
This paper is made freely available by the publisher.
This paper is made freely available by the publisher.

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Abstract

AbstractBackground 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.