Better services 'vital' for Black, Asian and Minority Ethnic dementia patients

There are calls for improved dementia services for people from Black, Asian and Minority Ethnic backgrounds in Wales.

Families and charities have said a lack of culturally appropriate services are leaving dementia patients isolated as they are reluctant to access support.

It comes as the number of people from Black, Asian and Minority Ethnic backgrounds with the condition is expected to rise.

Samia Egeh, from Grangetown, has personal and professional experience of the problem - her father has dementia and she cares for the elderly.

Having originally worked with young people, she said she started the job after seeing first-hand the lack of appropriate support for her father.

Ali Egeh moved to Wales from Somalia when he was 17 years old Credit: Samia Egeh

Ali Egeh moved to Wales from Somalia when he was a teenager, making Grangetown his home and becoming an important part of the community.

"He was always helping other people, he did so many things," Samia said.

However, dementia has affected his ability to go out and socialise.

"This confident person that my father was, we were just seeing a decline in that which was really sad," she added.

"Also his personality changed, where he just wanted to be in, where he was always an outgoing outdoor person."

Samia with her proud father Credit: Samia Egeh

Samia said that stigma and a lack of awareness around the condition within her community brought additional challenges.

"In the beginning it was interesting, we could see little things but nobody said anything.

"Because we weren't educated enough, we knew there was something but as a family I don't think anybody really wanted to have this discussion.

"I think everybody just thought, 'oh he's okay, he'll be alright, time will heal and things will get better', that's what we wanted to hear.

"I read into it, and my sister read into it, and I tried to speak to my mum and explain that we had to work with dad. I think it was a lot to take in, I think that unknown is always concerning."

Samia said her father has played a huge part in the women she and her sisters have become Credit: Samia Egeh

She said the more she learned about the condition, the more she realised just how unsuitable services such as day centres are for people like her dad.

"When people get dementia, a lot of them go back to their mother tongue language," she continued.

"They also want to see people from their own communities, faces that they recognise, stories that they could share with people that they've got things in common with.

"As Muslims we pray, so having an ablution place where they can wash and do those things and get ready for a prayer room.

"The food is another thing - that's really important in our culture, so not having the foods that they're used to, that's not there.

"So to be honest, why would they come out to use these regular day services that are available? Because they're not meeting their needs."

Alzheimer's Society Cymru said the number of people affected by dementia is expected to rise by 2050.

However, it said that increase will be felt more acutely in Black, Asian and Minority Ethnic communities.

'Some languages don't simply have a word for dementia', explains policy officer Huw Owen on awareness in communities

Mr Owen said: "The increase of incidents of dementia in the Black and Minority Ethnic communities is going to be seven-fold compared to two-fold in the White communities, so those communities are going to be hit hardest.

"At the moment support that is available isn't culturally appropriate - it doesn't take into account cultural sensitivities, ways of being brought up, differences in food and drink and things like that."

He added that it is "absolutely vital" that support is made suitable.

"We can't provide a system of care that's suitable for everybody in Wales unless we include everybody, at the moment that's not happening," he said.

"What we're seeing is that people from Black and Minority Ethnic communities don't feel confident to access the support because it's just not right for them."

The Welsh Government has highlighted its Dementia Action Plan, which sets out plans for dementia care and support between 2018 and 2022 and is backed by £12 million annual funding.

A spokesperson for the government added: "We recognise that we need to do more to improve dementia care for Black, Asian and Minority Ethnic communities in Wales and are working with partners to further develop culturally appropriate services." 

  • If you need support, Alzheimer's Society Dementia Connect support line has translation facilities available for people whose first language is not English or Welsh