Stigma of dementia ‘a barrier for Asian sufferers’

There is no word for the condition in some of the culture, in which it is sometimes believed to be a form of madness and can even be seen as bringing shame on a family.

Now, thanks to the work of the Alzheimer’s Society and its support workers in Bradford, those misconceptions are being replaced with a greater understanding of dementia and the help available to those affected by it.

Dementia adviser Atiq Hassan said: “It is difficult, because first and foremost there isn’t a word for dementia within the Asian community – we tend to use more subtle words like ‘memory problems’.

“Then there is also the belief as well as the stigma associated with dementia and mental health in particular. That thinking particularly affects the first generations – things will change as time goes on.

“Once we begin to overcome those kinds of barriers and explain that it’s actually an illness of the brain cells, that’s when we begin to win them over.

Although dementia does affect younger people, the reverence South Asian families have for their elder generations, in which the condition is more prevalent, may deter those affected from seeking help. The intervention of workers like Mr Hassan, a Muslim born in Pakistan and raised in Bradford with an understanding of South Asian cultures and languages, is vital to ensuring patients and their families in such communities receive the support they need.

“There are a lot of services which perhaps aren’t necessarily culturally appropriate to the South Asian community,” he said. “But they see me, an Asian person, coming to them having that depth of knowledge, the language skills and deeper understanding of the different cultures of the South Asian community, and we can quite often win people over.”

Much good work is being done at the Ramgarhia Sikh Gurdwara in Bolton Road, Bradford. The temple’s community kitchen, known in the faith as a langar, is attended by many older people from South Asian communities.

Dr Rajinder Singh, who worships and volunteers there, said: “What that has involved is a two-pronged approach to changing the environment of the Gurdwara, to make it more dementia-friendly and to raise more awareness.

“We have changed the signage, making the signs to the toilets and community kitchen more accessible. They are presented in Punjabi but also a picture depicting what it is.”

The changes are being welcomed by those who visit the Gurdwara, Dr Singh said – but the language barrier remains a problem in the wider South Asian community. Dementia support worker Clare Mason said NHS memory tests used to assess patients needed adapting to suit people from different cultural backgrounds.

“When you ask someone about the seasons for instance, we have four distinct ones here but it’s not always the same if you come from another country. And it’s no good asking history-type questions that are based in English or British history.

“It depends on how the individual has been brought up and it means you’re not necessarily getting a true reflection of their difficulties.

“We’re getting better at working with communities, but there is a long way to go.”