Healthcare leaders are rolling out new NHS training to help speed up dementia diagnoses among Black and Asian people following criticism about a lack of support for patients from minoritised communities, The Independent can reveal.
An awareness campaign is being launched in England to help those from ethnic minority communities receive a prompt diagnosis and get the support they need at the earliest opportunity.
The announcement coincides with Dementia Action Week 2023 and follows a critical report which found that thousands of south Asian people with dementia are being failed by “outdated health services designed for white British patients”.
It also found that hospitals were failing to spot dementia symptoms in a third of patients.
More than 25,000 people from an ethnic minority background live with dementia in England and Wales, although many more may be undiagnosed. This number is expected to double by 2026 and is projected to increase seven-fold by 2060, with the steepest increase in south Asian communities, according to the Alzheimer’s Society.
Dr Bola Owolabi, director of the Healthcare Inequalities Improvement programme at NHS England, said: “The pandemic put a greater spotlight on longstanding health inequalities experienced by different groups across the country.
“While there are many factors involved, the NHS is playing its part in narrowing the gap and ensuring equitable access to services through taking targeted action where needed to improve outcomes.
“Many people came to Europe from the 1950s to the 1980s to work and are now reaching an age when the risk of developing dementia is higher, so the NHS is launching a new campaign to ensure these people are given access to appropriate dementia care.
“This vital new campaign draws on the lived experiences of those affected as well as the expertise and insights of those providing dementia care to people from many different ethnic communities.”
Dementia rates are 22 per cent higher among Black people in the UK compared to white people, a recent study by University College London, while Black and South Asian dementia patients die younger and sooner after diagnosis.
The new campaign aims to highlight the symptoms of dementia and provide people from different ethnic communities with information about how they can access care – while supporting NHS staff with new resources to improve dementia care and patients’ experiences.
It is hoped that the move will also raise awareness among NHS staff of the specific challenges that people from ethnic minority backgrounds face in accessing dementia care, including presenting later and overcoming stigma.
For healthcare professionals, the NHS is launching new guidance on intercultural dementia care – developed in partnership with Alzheimer Europe – and the health service will also be encouraging staff to complete a new e-learning module developed by NHS England and the Royal College of Psychiatrists.
New booklets are also available to support carers for people from ethnic minority backgrounds, one for South Asian and one for Black Caribbean and African communities.
Dawn Liburd returned to Leeds from St Kitts ten years ago to look after her 81-year-old mother Vernice, who was diagnosed with dementia.
After Ms Liburd’s mother passed away in August, she took part in an NHS England focus group to try to better understand the needs and concerns of people living with dementia from an ethnic minority background.
The 58-year-old said: “I think it’s really important that health and care staff are more informed as to the needs of all people and communities, including the challenges some communities face in accessing dementia care and what specific support they may need throughout the dementia journey. This will help families going through the toughest of times.”
She is also keen to raise awareness of dementia amongst ethnic minority communities – and especially in the black Caribbean community which she is a part of.
“In our Caribbean culture, we don’t really talk about things like dementia - there is a stigma there. But I would urge everyone to get talking and to get help as soon as possible if they think a family member may have dementia,” she said.
“Being informed and having support won’t make seeing a loved with dementia any easier – but it will make the road ahead a little clearer.”
Tim Baverstock, head of local systems influencing at Alzheimer’s Society, said: “We welcome the NHS’s new initiative to speed up dementia diagnosis among people from ethnic minority backgrounds.
“Alzheimer’s Society research has shown that people of South Asian heritage are more likely to develop dementia compared with the general population, but figures for diagnosis if you are South Asian do not reflect this.
"Diagnostic tools can have both cultural and language barriers with memory test questions tailored to people who have lived in the UK all their life. A timely diagnosis can open the door to treatment, care and support, so we need culturally relevant assessments, interpreters, and local approaches to dementia diagnosis and ongoing support. Having a first language other than English should not be a barrier to getting diagnosed.
“Breakthrough drugs like lecanemab and donanemab are round the corner, and everyone should have equal access when they arrive, regardless of ethnicity.”
