New research shows there is a high level of distrust in the UK Government from Black and South Asian people with dementia and their carers, who also reported a lack of culturally appropriate person-centred support from healthcare providers.
Interviews undertaken during the pandemic by University College London suggest the lack of trust stems from the news of government officials breaking Covid-19 rules, feeling let down in terms of support and finding government advice confusing. This was felt more strongly by Black respondents.
One carer said: “Excuse me for being sarcastic, but I’ve had more clarity from my five-year-old grandchild than I did from the government. It was ridiculous.” (Carer of a spouse, Black ethnicity)
Responding to news of government officials breaking lockdown rules, a participant with dementia said: “Well that’s what the government, the people are… What’s the word? They get preferential treatment.” (Person with dementia, Black ethnicity)
The study, funded by the National Institute for Health Research School for Primary Care Research and supported by end-of-life charity Marie Curie, also highlighted disappointment in the standard of care received in care homes and hospitals, particularly among South Asian participants. Responses revealed a perceived lack of person-centred, culturally sensitive care and cultural barriers.
In response to a healthcare professional assuming a patient did not speak English, their carer said: “I’ll tell you something. He was a bank manager all his life. And now I leave it to you to decide whether we speak English or not.” (Carer of a spouse, South Asian ethnicity)
Outlined in the research is the importance of ensuring that people from Black and South Asian backgrounds who are affected by dementia are given support and care that is not impacted by discrimination.
Dr Pushpa Nair at UCL, who conducted the interviews, said:“Covid-19 has highlighted many health and social inequalities for people from minority ethnic groups, including for people living with dementia and their families from these communities. Our work has shed light on ways in which the pandemic was negatively experienced by Black and South Asian people affected by dementia, with lack of trust in the government being a serious concern. As we hopefully move out of the pandemic, government workers and healthcare professionals must learn from these lessons, and work to eradicate inequalities and re-build trust among these communities.”
Sabine Best, Head of Research at Marie Curie said:
“This research is an important reminder of the work we all need to do as providers of healthcare to improve and promote inclusivity. Some of the comments made by respondent’s echo sentiment in research from before the pandemic and will continue if there isn’t an acceptance that change is needed.”