Real stories

South Asian communities affected by dementia deserve better support

Karan is a leading researcher looking at how the healthcare system can better support people living with dementia, particularly people from South Asian communities.

Alzheimer’s Society has funded her research, and she supports our work to remove healthcare inequalities and improve dementia diagnosis and care in South Asian communities.

Our Ambassador, Dr Karan Jutlla.

My dementia story

Punjabi is the third most spoken language in the UK, but it doesn’t have a word for dementia. The same is true of Hindi, Urdu, Gujarati and many other South Asian languages.

So it’s not surprising that there’s a taboo around dementia that means thousands of families from South Asian communities aren’t seeking support, or even a dementia diagnosis.

Sadly, my father developed an alcohol-related dementia in the later years of his life, following the tragic loss of my brother.

Whilst my mother worked to keep us afloat, I had sole responsibility of his care.

His illness was not understood by members of our family and, our community and were often interpreted as a ‘loss of mind’ or ‘madness.’

This lack of understanding made me feel very alone in my experiences – just like dementia, alcoholism was not a recognised condition amongst the community.

A shared experience in our community

My first research project in 2006 was the first time I realised that I wasn’t alone in my experience, only these people were caring for a person with dementia.

The chaos, the unpredictability, the forgetfulness, the warped realities, the change in character, the childlike behaviour, the loss of dignity and identity of that person. These were all experiences that connected us.

I remember interviewing carers about their experiences, and it was the pain in their eyes I recognised – that pain of losing their loved one even though they were right in front of them.

This connection that I had developed to carers of people with dementia from a South Asian community led me to want to research this area further, and develop a deeper understanding of my community.

Why were we not allowed to talk about controversial or taboo subjects like mental health, dementia or alcoholism? Why is there a sense of shame and where has it come from?

I did my PhD on Sikh carers of a family member with dementia in Wolverhampton. It revealed lots of complexities associated with community and cultural norms, and migration experiences, that impact on a person’s experience of being a carer.

Barriers to accessing dementia support

There are cultural barriers to getting a dementia diagnosis – both because people don’t seek help, but also because the help isn’t tailored to our communities.

Because many Indian languages simply don’t have a word for dementia, quite often the symptoms of dementia get translated as “memory loss” or “mental ill health”. This isn’t just an incorrect interpretation, it can be further stigmatising.

It can leave people embarrassed, confused, isolated, and feeling unable to seek help.

Supporting family members, particularly elderly relatives, and remaining a tight-knit family is hugely important to many people from South Asian communities.

We need this support to include encouraging family members to talk openly about their dementia worries.

We need a louder conversation around dementia to break cultural taboos and stigma, and so that people get their loved ones the quality support and care they need.

A need for culturally appropriate support

There are no specific stats on how many people from South Asian backgrounds in the UK are living with dementia, but research suggests that we’re likely to see an increase in cases within this community. 

Yet when people do go to seek a diagnosis, there can be further barriers.

Memory test questions are often geared to people who have lived in the UK all their lives. Often,  English isn’t the first language for a lot of older people from a South Asian background. Translation services are also scarce.

I’ve heard about care agencies muddling up South Asian languages, leaving families feeling isolated, anxious about finding the right care, and depressed.

Culturally aware services suited for different languages are desperately needed.

That means investment in the health system to ensure people from every community can get an accurate, early diagnosis.

Until you get a diagnosis, you can’t get support. So I can’t stress enough just how important diagnosis is.

Karan stresses the need for culturally appropriate resources, support and care for those in communities like hers.

A positive step forward

While we need much more information and support in different languages, Alzheimer’s Society is leading the way by translating information, advice and support into eleven different languages. 

I’m so proud to have worked with the Society and community members to develop a resource page tailored for Punjabi-speaking communities, tackling culturally specific issues, including stigma. It’s information like this that will help to reach people and break down the taboos.

If you’re from a South Asian community and worried about yourself or someone else, it’s so important that you seek an early and accurate diagnosis.

By getting help and talking about dementia, you and your families will be able to unlock the support you desperately need and begin to plan for the future.

Get dementia support in your language

Call our support line 0333 150 3456 for information and support. We can arrange an interpreter to talk to you in your language. Call the support line and say your language, end the call and wait. The adviser will then call you back with an interpreter.