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Trust and inclusion during the Covid-19 pandemic: Perspectives from Black and South Asian people living with dementia and their carers in the UK

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Megan Armstrong, Narin Aker, Pushpa Nair, Kate Walters, Yolanda Barrado-Martin, Nuriye Kupeli, Elizabeth L. Sampson, Jill Manthorpe, Emily West, Nathan Davies

Original languageEnglish
Article numberGPS5689
JournalInternational Journal of Geriatric Psychiatry
Issue number3
PublishedMar 2022

Bibliographical note

Funding Information: Many thanks to our patient and public involvement panel for providing valuable input into study design and strategy. This study/project is funded by the National Institute for Health Research (NIHR) School for Primary Care Research (project reference 489). The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care. This work was supported by the Economic and Social Research Council [grant number: ES/V003720/1]. Pushpa Nair is funded through her NIHR In‐Practice Fellowship (award number 300286). Nuriye Kupeli is supported by Alzheimer's Society Junior Fellowship grant funding (Grant Award number: 399 AS‐JF‐ 17b‐016). Nathan Davies is supported by Alzheimer's Society Junior Fellowship grant funding (Grant Award number: 399 AS‐JF‐16b‐012). Elizabeth L. Sampson is supported by Marie Curie core grant (number MCCC‐FCO‐ 16‐U). Jill Manthorpe is supported by the NIHR Policy Research Unit in Health and Social Care Workforce (Ref. PR‐PRU‐1217‐21002). Publisher Copyright: © 2022 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons Ltd.

King's Authors


People from ethnic minority backgrounds living with dementia are more likely to be diagnosed later and have less access to health and social care support than their White counterparts in the United Kingdom (UK). Covid-19 has exacerbated health inequalities and diminished trust from underserved communities in the government and health services. The wider aim of the study was to explore the impact of covid-19 on Black and South-Asian people living with dementia and their carers as well as exploring the experiences of dementia care. The present paper specifically explores their views on trust and mistrust using an ecological model.
Semi-structured interviews were conducted with 11 family carers and four people living with dementia from South Asian or Black communities living in the community. Thematic analysis was used to analyse data.
An exploratory qualiative design was used.
Four main themes were developed exploring trust at the structural, organisational, community and individual level. At the structural level, participants discussed the inequity of Covid-19, some lack of trust in the UK Government and confusion in its messaging, and the anxiety sometimes leading to curtailment of media usage. At the organisational level, there was some evidence of a perceived lack of person-centred and culturally sensitive care from healthcare professionals, as well as concerns around care homes as places of safety. At the neighbourhood community level, participants discussed both a distrust as well as a strengthening of relationships and, at the individual level, factors such as knowledge of services, identity, and faith influenced their experience of the pandemic.
People living with dementia need support at all levels and this study highlights how the pandemic impacted each level. Ways to improve trust in the Government and health professionals alongside culturally adapted health messaging should be explored. Alongside this, an examination of how cultural values and norms may influence help-seeking responses to dementia and increase trust in services may be helpful post-pandemic.

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