Calls for more support amid concern over 'huge gap' in culturally appropriate BAME dementia care

  • Watch report by Lois Swinnerton

Looking after a loved one with dementia can be challenging for most, but for families within Black, Asian and minority ethnic communities (BAME), it can be even tougher, with language barriers and stigma surronding the condition creating additional hurdles.

New figures from Alzheimer's Society show three in five people affected by dementia in Yorkshire and the Humber did not feel they received enough support in the last 12 months. But for those from BAME communities there's concern there just aren't enough tailored services available.

Currently around 25,000 people from BAME communities in England and Wales are estimated to be living with dementia. That number is expected to double to 50,000 by 2026 and rise to over 172,000 by 2051.

That's nearly a seven-fold increase in 40 years. Compared to just over a two-fold increase in the number of people with dementia across the whole UK population in the same time period.

Touchstone Dementia Service in Leeds runs specialist weekly support cafes for people from South Asian backgrounds - providing a lifeline for people in the local community.

The sessions are run in a number of languages to meet the needs of those who attend, whose dementia means they often resort to their native language.

Mohinder Singh Padem was diagnosed with vascular dementia almost 10 years ago. He speaks five different languages and his daughter, Kalvinder Degun says the dementia cafe, "brings him to life".

She explains: "With dementia they go back to what memories they've got. So for them to speak about Kenya, about the food, about how they came to this country and that's just brilliant."

The dementia cafe meets once a week in Leeds

There isn't a word for dementia in five South Asian languages and it's often not talked about within the community. It's a condition Kalvinder and her family had little knowledge of when her father was diagnosed.

She adds: "At first when we heard about it, we didn't even think dementia happened to Indian people so we were kind of like isolated and as a family just carried on.

"There's obviously stigma attached to it and a lot of families don't know whether to tell everybody or not to tell everybody. What we don't want for other people is and this is speaking from experience, we don't want it to get to a crisis point before we ask for help."

Ripaljeet Kaur has been running the Touchstone BME Dementia Service for 10 years and says this cafe is the only service of its kind in the city. Her team also works with local mosques and temples to raise awareness and encourage conversation around dementia.

But she says more needs to be done, adding that there's a huge gap in culturally appropriate services across the country.

The café is for South Asian people with dementia and their carers.

She said: "There's a huge gap in services which meet their needs, it will be really good to fund organisations like us, projects like us going forward so that we can have that service where we can support these people, support these families.

"We know they are struggling, especially after the pandemic a lot of families are struggling because dementia has progressed."

In a statement the Department for Health and Social Care said: "We want a society where every person with dementia receives high-quality, compassionate care, from diagnosis through to end of life, regardless of their background or ethnicity.

"We will set out bold action to reduce the gap in health outcomes between different communities in a white paper, and publish our ambitious 10-year strategy to tackle dementia – focusing on the specific health and care needs of people living with dementia and their carers.

"NHSE has also commissioned research into the role of various factors - including ethnicity - in explaining different dementia diagnosis rates in targeted areas across England."