People from South Asian communities are more likely to develop dementia than the general UK population, due to being at higher risk of other illnesses like heart disease, stroke and diabetes – which all increase the risk of dementia.

Despite this, an advisory group of people living with an affected by dementia in the community have told Alzheimer’s Society that stigma and taboo within the community are the biggest barriers in people seeking a diagnosis. 

This was also seen by over 80% of Alzheimer’s Society’s frontline staff, who support South Asian people affected by dementia, who found fear of embarrassment and misunderstanding within the community is preventing people seeking help about dementia symptoms.  

Alzheimer’s Society has launched a new campaign for Dementia Action Week (16-22 May) to drive up diagnosis rates, and has been working with leading academics who specialise in dementia within the South Asian population and with members of the Punjabi community affected by dementia, to launch dedicated resources and information for members of the Punjabi speaking community, encouraging anyone worried about their own or their loved ones’ memory to seek support in getting a diagnosis.

Former teacher Bhagwant Sachdeva, 79, from Wolverhampton, features in Alzheimer’s Society’s Dementia Action Week film sharing her real-life experience of her dementia diagnosis revealed how people in her community responded negatively when she started showing signs of dementia. She said: 

“It was about 4 years ago that I first had a feeling something wasn’t right with me. At my community group, I kept forgetting the other ladies’ names, losing my train of thought, or saying the wrong thing. They would say to me “you’re going pagal’ (mad).  They didn’t mean it. It’s just a habit in our society to respond that way and say that someone is losing their mind.  

“I came across a mental health stand in town and they advised I visit a doctor about my symptoms. Soon after this visit I was diagnosed with Alzheimer’s disease. They clearly explained what it was to me, which helped me understand what I was going through. I was relieved to be able to explain to my friends that I have Alzheimer’s disease, and that I wasn’t going ‘mad’ or doing things on purpose.  

“I don’t hide my diagnosis from anyone, and I have no problem telling people about it. It’s allowed me to access medication to help me live well with dementia, raise awareness in my community, and feel understood.”

There are 900,000 people in the UK living with dementia - a group of symptoms that include problems with memory, thinking or language, and changes in mood, emotions, perception and behaviour. 

More than 200,000 people will develop dementia this year, the equivalent of one person every three minutes. But with diagnosis rates at a five-year low, tens of thousands of people are now living with undiagnosed dementia without access to the vital care and support that a diagnosis can bring. 

Dr Kamel Hothi OBE, Alzheimer’s Society Ambassador, Trustee to the Queen’s Commonwealth Trust and ranked in the top 100 most influential black, Asian and minority ethnic leaders in the UK, whose uncle lived with dementia, said:  

“When someone you love starts showing signs of illness, it’s understandable you want to care for them yourself and protect them from prying eyes, especially when you yourself don’t understand what is happening. But ignoring the symptoms of an illness like dementia and not seeking help is only letting them down and making life difficult for yourself. 

“It’s a regret my uncle didn’t get his diagnosis sooner. As a family we didn’t speak about it, so we didn’t spot the signs sooner and this denied him access to the support and help available. A diagnosis can be daunting, but it’s better to know and as a community, we need to step up for our loved ones, stop the stigma and act on the first signs of dementia.  

“Alzheimer’s Society’s online hub for the Punjabi community is a fantastic resource, offering Punjabi-translated practical advice on what next steps to take, what to expect during and after the diagnosis process”    

The charity has also worked closely with leading clinicians to make the diagnosis process easier.  They have developed a ‘symptoms checklist’ with support from clinicians, which is available on their new online memory hub, and an information film answering questions on dementia, to help people identify changes that might be due to dementia.  

To find out more see alzheimers.org.uk/punjabi or call 0333 150 3456. A Punjabi Translation service is available to enable the charity to provide you with the right support.