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End-of-Life Care for People with Dementia from Ethnic Minority Groups: A Systematic Review

Authors

  • Amanda Connolly BSc,

    1. Mental Health and Neurodegeneration Research Group, School of Community-Based Medicine, Manchester Academic Health Science Centre, University of Manchester, Manchester, United Kingdom
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  • Elizabeth L. Sampson MD,

    1. Research Department of Mental Health Sciences, University College Medical School London, London, United Kingdom
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  • Nitin Purandare PhD

    Corresponding author
    • Mental Health and Neurodegeneration Research Group, School of Community-Based Medicine, Manchester Academic Health Science Centre, University of Manchester, Manchester, United Kingdom
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Address correspondence to Nitin Purandare, Room 3.319, Jean McFarlane Building, University of Manchester, Oxford Road, Manchester M13 9PL, United Kingdom. E-mail: nitin.purandare@manchester.ac.uk

Abstract

A systematic review of the literature was conducted to examine the relationship between ethnic minority status and provision of end-of-life care for people with dementia. It included all empirical research on people with dementia or severe cognitive impairment or their caregivers and with ethnic minority people as a subgroup in examining an outcome involving end-of-life care processes or attitudes toward end-of-life care. Two authors independently rated quality of included studies; 20 studies met eligibility criteria and were included in the review: 19 quantitative and one qualitative. All articles were based in the United States, with African American, Hispanic, and Asian groups being the ethnic minorities. Artificial nutrition and other life-sustaining treatments were more frequent and decisions to withhold treatment less common in African American and Asian groups. The qualitative evidence, albeit limited, found that attitudes toward end-of-life care were more similar than different between different ethnic groups. Differences in hospice usage patterns were less consistent and potentially influenced by factors such as study setting and dementia severity. Caregivers' experiences differed between ethnic groups, whereas levels of strain experienced were similar. Disparities in end-of-life care for people with dementia from ethnic minority groups appear to exist and may be due to the double disadvantage of dementia and ethnic minority status. Further research is needed in other western multicultural countries, with a focus on prospective qualitative studies to understand the underlying reasons for these differences, not just their occurrence.

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