Exploration of the impact of the COVID-19 pandemic on people with dementia and carers from black and minority ethnic groups

• Published in: BMJ open 2021-05, Vol.11 (5), p.e050066
• Main Authors: West, Emily, Nair, Pushpa, Barrado-Martin, Yolanda, Walters, Kate R, Kupeli, Nuriye, Sampson, Elizabeth L, Davies, Nathan
• Format: Article
• Language: English
• Subjects: adult palliative care; Black or African American; Caregivers; Community; Coronaviruses; COVID-19; Dementia; Dementia - epidemiology; Demographics; Ethnicity; Humans; Interviews; Medical research; Minority & ethnic groups; palliative care; Pandemics; Public Health; SARS-CoV-2; Teams
• ISSN: 2044-6055; 2044-6055
• DOI: 10.1136/bmjopen-2021-050066

IntroductionDespite community efforts to support and enable older and vulnerable people during the COVID-19 pandemic, many people with dementia and their family carers are still finding it difficult to adjust their daily living in light of the disruption that the pandemic has caused. There may be needs specific to black, Asian and minority ethnic (BAME) populations in these circumstances that remain thus far unexplored.ObjectiveThe aim of the study was to explore the effects of the COVID-19 pandemic on people living with dementia and their family carers of BAME backgrounds, in relation to their experiences of community dementia care and the impact on their daily lives.Design15 participants (persons with dementia and carers) were recruited for semistructured qualitative interviews. Respondents were of South Asian and Afro-Caribbean backgrounds. We used thematic analysis to analyse our data from a constructivist perspective, which emphasises the importance of multiple perspectives, contexts and values.ResultsThere were a number of ways that the COVID-19 pandemic has impacted BAME persons with dementia and carers with regard to their experiences of dementia community care and the impact on their everyday lives. In particular we identified eight key themes, with subthemes: fear and anxiety, food and eating (encompassing food shopping and eating patterns), isolation and identity, community and social relationships, adapting to COVID-19, social isolation and support structures, and medical interactions. Fear and anxiety formed an overarching theme that encompassed all others.DiscussionThis paper covers unique and underexplored topics in a COVID-19-vulnerable group. There is limited work with these groups in the UK and this is especially true in COVID-19. The results showed that such impacts were far-reaching and affected not only day-to-day concerns, but also care decisions with long-ranging consequences, and existential interests around fear, faith, death and identity.