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

Abstract

Introduction: 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. Method: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.Design: An exploratory qualiative design was used.Results: 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. Conclusions: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 messagingThis is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

Rapid development of a COVID‐19 care planning decision‐aid for family carers of people living with dementia

“…We used four evidence sources: (1) rapid review and synthesis of current evidence, 18 (2) qualitative interviews with charity helpline staff, 19 (3) qualitative interviews with people living with dementia and their carers from ethnic minority groups 20,21 and (4) synthesized evidence from charities and national organizations reporting on COVID-19 and dementia/older people. These evidence sources were summarized and synthesized in a matrix (see Table 1 e.g., matrix) to highlight key themes and patterns, including areas where there are gaps in support and information at the time.…”

“…The person living with dementia in our coproduction workshop was supported by their family carer. For this study, we interviewed people living with dementia separately to ensure their voices were heard 20,21 . We placed substantial emphasis on this interview data when devising the decision‐aid prototype.…”

“…We used four evidence sources: (1) rapid review and synthesis of current evidence, 18 (2) qualitative interviews with charity helpline staff, 19 (3) qualitative interviews with people living with dementia and their carers from ethnic minority groups 20 , 21 and (4) synthesized evidence from charities and national organizations reporting on COVID‐19 and dementia/older people.…”

“…The findings from the qualitative interviews, as well as being written up as a research paper, 19 , 20 , 21 formed the foundational data for the development of the decision‐aid; guiding topics covered, resources identified and areas of need to address.…”

“…For this study, we interviewed people living with dementia separately to ensure their voices were heard. 20 , 21 We placed substantial emphasis on this interview data when devising the decision‐aid prototype. Facilitators highlighted in the workshops and in the interview data the key messages from people living with dementia, thus ensuring the voices of people living with dementia were represented in the workshop discussions.…”