Thousands of south Asian people living with dementia in the UK are being denied access to help and support because stigma and taboo prevent them from getting diagnosed, a charity has warned.
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, such as heart disease, stroke and diabetes, that increase the risk of dementia.
However, the Alzheimer’s Society says they are less likely to come forward, with stigma and taboo among friends and family the biggest barrier to seeking a diagnosis. Fear of embarrassment and misunderstanding in south Asian communities is stopping those with dementia seeking help, the charity’s chief executive told the Guardian.
“For anyone with dementia symptoms, getting a timely diagnosis is crucial – only then can they get access to vital treatments and support,” said Kate Lee. “But people in the south Asian community have told us the worrying reality is that stigma and taboo are often deterring families from getting support.
“Living without a dementia diagnosis can be dangerous, with people ending up in crisis situations. Yes, a diagnosis can be daunting but it’s better to know – nine in 10 people with dementia have said that they benefited from getting diagnosed.”
Alzheimer’s Society is launching a new campaign for Dementia Action Week to drive up diagnosis rates, and has produced dedicated resources and information for members of the Punjabi-speaking community. Anyone worried about their own or a relative’s memory is being encouraged to seek support in getting a diagnosis.
When Bhagwant Sachdeva, 79, from Wolverhampton, first showed signs of dementia, the response from others was negative. “It was about four years ago that I first had a feeling something wasn’t right with me,” she said. “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].”
Doctors later confirmed that the former teacher had Alzheimer’s disease. Sachdeva says the diagnosis left her feeling “relieved” that she could now explain the symptoms to her friends. “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.”
Dr Kamel Hothi, an Alzheimer’s Society ambassador and special adviser to the Queen’s Commonwealth Trust, regrets her uncle not being diagnosed with dementia earlier.
“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,” she said. “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.”
Separate research published by the charity reveals that one in four people in the UK with dementia experience symptoms for over two years before they are diagnosed. It has produced a checklist with the Royal College of GPs to help people identify symptoms of dementia and seek help in getting diagnosed.
It includes ticking whether people suffer memory problems, such as struggling to find the right words or repeating questions and phrases; issues with daily living, such as struggling to pay bills or getting lost; and behavioural or emotional problems, such as becoming aggressive or withdrawn, acting inappropriately or walking about.
The charity’s poll of 1,019 people with dementia and their carers found that confusing dementia symptoms with getting old (42%) was the number one reason it took people so long to get a diagnosis. About 26% took more than two years to get a diagnosis, and a quarter of these sought one only after they had reached crisis point.
“Asking the same question over and over again is not called getting old, it’s called getting ill,” said Lee. “With the pandemic causing diagnosis rates to plunge, it’s more important than ever to seek help. You don’t have to face dementia alone; we’re here to support everyone affected.”