Of the almost one million people living with dementia in the UK, around 25,000 are from a black or ethnic minority background. This population is set to double to 50,000 by 2026, and grow to 172,000 by 2051.

This seven-fold increase compares to a two-fold increase in the general population, as quoted in a report by the All-Party Parliamentary Group on Dementia.

Dementia is a high-profile issue.

The family of actor Bruce Willis, diagnosed with frontotemporal dementia last year, is shattering preconceptions about the condition and caregiving. Recent studies suggest scientists are close to creating a blood test to predict dementia. And the late activist Wendy Mitchell, who died last month, advocated powerfully for awareness.

But black and ethnic minority communities are under-represented in dementia debate and action – despite facing a triple whammy of inequality related to the condition. They are considered to be at higher risk. Awareness and diagnosis rates are lower (some South Asian languages have no word for dementia). Culturally appropriate, faith-sensitive provision is scant. 

The disparity has revealed itself starkly to me as my extended family now includes two older relatives living with dementia – one is from a white British background, and one was born in India, but has lived in England since childhood (it was a surprise to find my South Asian relative reverting occasionally to their mother tongue, for example).

One reason dementia is rising in ethnic groups is, as a 2021 Alzheimer’s Society report states, some people who moved here during the 1950s and 1970s are reaching an age where dementia is more likely to develop.

Vascular dementia is also thought more to be common due to higher prevalence of risk factors such as diabetes, hypertension, and cardiovascular disease. Research by University College London and the London School of Hygiene and Tropical Medicine, suggests that black and South Asian patients survive for less time after diagnosis and die younger.

The inequality extends to carers, according to a Race Equality Foundation (REF) paper, which found they feel culturally obliged to provide support but are unwilling or unprepared. However, mainstream services assume families do not need external support.

Dr Sahdia Parveen, Associate Professor at the University of Bradford’s Centre for Applied Dementia Studies, who co-authored the REF paper, says: “On the family level, people from minority ethnic backgrounds have less awareness or knowledge of dementia and don't always recognise symptoms, which delays the process of seeking help. Dementia is often seen as being the same as 'old age’.”

At a community level, dementia is stigmatised, she says: “In South Asian communities there is a misconception that the person may have nazaar – evil eye – placed on them or the person is being punished by God. In African and Caribbean cultures, dementia is linked to witchcraft.”

Families might hide the diagnosis, which prevents access to support.

Challenges at a health systems level include diagnostic questions that rely on British history knowledge.

“We currently don't have diagnostic tools that are culturally sensitive and reliable for minority ethnic communities," Dr Parveen adds. "The cognitive tests have a western and education bias. There are also issues of lack of cultural sensitivity from health care professionals – racism – and services not being set up to meet the needs of diverse communities.”

Solutions, she says, include services working with community groups on awareness, and developing culturally appropriate cognitive tests, post-diagnostic services and diversity training for professionals.  

Dr Parveen co-led a collaborative project, The South Asian Dementia Pathway study, which created resources including culturally appropriate assessments. Recommendations for service commissioners and managers included information being given face-to-face and tailored support for families.

Mainstream professionals should consider the work of the Leeds-based Black and Minority Ethnic (BME) Dementia Service, run by health and wellbeing charity Touchstone. 

Launched 11 years ago and jointly commissioned by the local authority and NHS, it provides specialist support to people living with memory problems or a dementia diagnosis and their carers. Despite its tiny size (its support worker and administrative officer are both part-time), the service has helped more than 300 people since 2020, through self-referral or via other organisations, GPs or memory clinics.   

The BME Dementia Service. Photo: Ripaljeet Kaur

Ripaljeet Kaur, its service manager, says: “Our core aims are raising awareness of dementia, to enable early diagnosis, breaking down stigma as that creates hurdles for people to access mainstream services, and supporting people and carers to get a diagnosis. We also provide post-diagnostic support – the whole dementia journey.”

As well as awareness-raising talks in mother tongue in local faith and community settings, there is a walking group for carers and a weekly dementia cafe, Hamari Yaadain (“Our Memories”), supported by four volunteers.

The 20 café members do an hour of physical activity like yoga or games like carrom – which originated in India – or 'food bingo’, using pictures of vegetables found in Asian cuisine. The second hour is spent chatting over drinks and snacks.

The service is also the founder member of the 10-strong BME Dementia Forum, uniting local organisations involved in dementia support.

Kaur recently supported a woman with vascular dementia who had been discharged from the memory clinic with a dementia diagnosis. She and her husband had a general information leaflet but struggled as the condition progressed.

They came to the BME Dementia Service by word of mouth. Kaur’s assessment revealed that the husband did not understand dementia or how to cope with its symptoms. The couple had stopped socialising due to stigma and the husband had not sought help because he feared services were culturally inappropriate. He thought his wife was possessed as she would talk to herself about blood.  

Kaur did one-to-one sessions with the husband, provided written information in his mother tongue, explained the prevalence of dementia and the benefits of joining social groups. 

Kaur learned that, as a child, the wife had witnessed her father’s fatal accident and explained to the husband that the talk of blood was due to the return of repressed memories.

The couple joined the Hamari Yaadain café and Kaur arranged for someone who shared their cultural background to provide respite care so the husband could have a break. 

More people should benefit from this kind of support. 

While the Government’s brutal cuts to local authority funding and lack of investment in social care offer little hope for replication of the BME Dementia Service, much of its work relies on attitudinal change. 

Kaur says mainstream services can adapt at low cost: “Just be mindful and patient and show that compassion – you can still work with people from different backgrounds by acknowledging their cultural needs.”

A focus on the widening inequality in dementia care for people from ethnic minority backgrounds is vital, not only because the population is growing but because this group is struggling disproportionately in the cost of living crisis. 

A study funded by Alzheimer’s Society and the National Institute for Health and Care Research last year showed a fifth of social care users with dementia had cut their spending on support to save money – and this was especially true for those from non-white ethnic backgrounds.  

As Dr Sahdia Parveen says it is not “an issue we can ignore anymore”.

“The minority communities have 'caught up’ age wise with the population and have higher prevalence of dementia risk factors… a lot of effort has gone into understanding perceptions of dementia in minority communities and raising awareness. However families affected by dementia urgently need culturally competent dementia care.”

Without the creation of more inclusive dementia support, an overlooked but growing population is being failed.