With high profile sports people talking about their mental health struggles, the issue has become much more mainstream in the last couple of years. But mental health issues are much broader than stress, performance anxiety and depression. The ‘Cinderella’ of mental health are those illnesses which accompany old age.
The government has acknowledged this and in 2016 their own Dementia Policy Team released an Implementation Plan. Their goal was by 2020 to make the UK the best country in the world for dementia care, support, research and awareness. But some communities have further to go than others. Across the country, there are pioneering initiatives and potentially life-changing partnerships in research and in frontline care.
A community interest group in based in Bradford’s Asian community is aiming to “raise awareness” of dementia in ethnic minority communities, while also trying to tackle unconscious biases which may influence the way mental health service providers perceive and treat people of colour with the syndrome.
Mohammed Rauf MBE is the founder of Bradford-based Meri Yaadain and argues that there can sometimes be a “lack of understanding” and “stigma” around dementia in what are sometimes referred to as ‘BAME’ communities, which may prevent families from seeking help.
He also added that there are “cultural nuances” which some services are unaware of, which can lead to practitioners being unintentionally “prejudiced” towards people from ethnic minority backgrounds who have dementia.
Mohammed is from Bradford and is of Pakistani heritage. His own grandmother had dementia when he was younger, and he is now doing a PhD around the subject.
He founded Meri Yaadain in 2006, and decided on the group’s name – which, in a number of South Asian languages, means ‘my memories’ – to reflect the fact that there is no direct translation for the word ‘dementia’ in his native tongue. Mohammed believes that this is part of the problem – in some cultures, there remains a lack of knowledge when it comes to dementia.
“There can also be stigma, and people from minority backgrounds may wonder what neighbours or relatives think if their loved one has dementia”, he said. “Some people may think it’s a result of ‘black magic’ or being possessed by a jinn, so may be more likely to go to a faith healer, rather than a GP.
“People might dismiss someone with dementia as ‘pagal’ [meaning ‘mental’ in Urdu and Punjabi], and in Asian communities, they often wait until crisis point to see a GP, while white British communities are more likely to come forward earlier."
He added that there is a need for services to adapt in order to meet the needs of all people with dementia, and not just people from cultures they are more familiar with.
“At Meri Yaadain, we look at how services can reach different cultures through diversity, rather than through a ‘one size fits all’ approach”, he said.
“In some respite centres, if you’re an ethnic minority person, the environment may not be familiar – for example, the food, the smells and the images on the wall may be alien, and also, the staff may not look like you. “There is also a perception that Asian families, for example, always look after their own, so services feel they don’t need to give them as much support.
“There is also a language barrier – even if you’ve been speaking English for 50 years, if you have dementia, you’re more likely to return to only speaking your native language. There are translators available, but they need to be trained in dementia awareness and cultural competency.”
Mohammed said that there are 25,000 people from ethnic minority backgrounds with dementia in the UK – a figure he claims is “expected to increase seven or eightfold in the future”, which is "a lot faster” than for white British people over the same period, who are expected to see “a twofold increase”.
There are a number of reasons as to why this is the case.
“Many who came to this country in the 1950s and 60s are now in that age bracket where dementia is more common, and research says people from ‘BAME’ backgrounds are more likely to have early onsets, and more likely to have strokes – which can lead to vascular dementia”, Mohammed said.
Mohammed also believes that poverty – which he said can tie into race – is also a factor.
"Migrant communities tend to go to poorer areas, that's how settlement works – if you live in a socio-economically deprived locality, the chances are you can't access services as much, and there may already be a lot of pressure on your local services", he said.
Meri Yaadain recently held a dementia awareness session at a community centre in Girlington – an inner-city suburb of Bradford which has had a large South Asian population for generations and is today a melting pot of other ethnic minority communities and cultures as well.
"We had conversations about what it means to support someone with dementia. Around 40 people were in attendance, which was great”, Mohammed said. “There is a way to educate people, and we hope things can improve.”
Councillor Fozia Shaheen, of the Toller ward – where Meri Yaadain is based – said that the organisation is doing “phenomenal” work.
“Mohammed Rauf and Meri Yaadain have brought dementia, which can often be a taboo subject, to the forefront”, she said.
“As a ward councillor, I am very proud to see organisations like this striving to meet the needs of the community, especially knowing that there is a real need in our community for people to understand what dementia is, and for carers to understand what support is available for them.
“Mohammed is a very approachable person and is doing a PhD around this. This is fantastic project which is going from strength to strength.
“There are so many unpaid carers who are really struggling, but organisations like Meri Yaadain bring things back to life and bring this into context – in the sense that dementia is a real illness and there needs to be more awareness of it.”
Yusef Alam is a 23-year-old journalist and writer from Leeds. He is a sociology graduate and has a particular interest in race, racism and identity. He is British-Pakistani and often cites his own personal experiences as inspiration for his work, hoping to break a few stereotypes in the process.