A charity has warned that thousands of people living with dementia in South Asia in the UK are being denied access to help and support because stigma and taboos prevent them from being diagnosed.
People from South Asian communities are more likely to develop dementia than the general population of the UK, due to an increased risk of other diseases, such as heart disease, stroke and diabetes, that increase the risk of developing dementia.
However, the Alzheimer’s Association says they are less likely to progress, with stigma and taboos among friends and family the biggest barrier to seeking a diagnosis. The charity’s chief executive told the Guardian that fear of embarrassment and misunderstanding in South Asian communities prevents people with dementia from seeking help.
“For anyone with symptoms of dementia, getting a timely diagnosis is critical – only then can they have access to vital treatments and support,” Kate Lee said. But people in the South Asian community tell us that the disturbing truth is that stigma and taboos often prevent families from getting support.
Living without a diagnosis of dementia can be dangerous, as people end up in crisis situations. Yes, the diagnosis can be daunting but it’s better to know – nine out of 10 people with dementia said they benefited from a diagnosis.”
The Alzheimer’s Association is launching a new Dementia Action Week campaign to raise diagnosis rates, and it has produced resources and information dedicated to members of the Punjabi-speaking community. Anyone concerned about their memory or their soon-to-be memory is encouraged to seek support in a diagnosis.
When Bhagwant Sachdeva, 79, of Wolverhampton, first showed signs of dementia, others responded negatively. “About four years ago I first felt that something wasn’t right for me,” she said. “In my community group, I kept forgetting the names of the other ladies, or losing my train of thoughts, or saying the wrong thing. They’d tell me, ‘You’re going to Pagal’.” [mad]. “
Doctors later confirmed that the former teacher had Alzheimer’s disease. Sachdeva says the diagnosis made her “relieved” that she can now explain the symptoms to her friends. “I don’t hide my diagnosis from anyone, and I have no problem telling people. It has allowed me access to medications to help me live well with dementia, raise awareness in my community, and feel understood.”
Dr. Kamel Al-Houthi, Ambassador of the Alzheimer’s Association and Special Adviser to the Queen’s Commonwealth Fund, regrets her uncle for not being diagnosed with dementia earlier.
“As a family we didn’t talk about it, so we didn’t catch the signs sooner and that deprived him of the support and help that was available,” she said. “Diagnosis can be daunting, but it’s better to know that and as a society, we need to step up the efforts of our loved ones, stop 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 has had symptoms of dementia for more than two years before being diagnosed. He has produced a checklist with the Royal College of General Practitioners to help people identify symptoms of dementia and seek help with a diagnosis.
It includes determining whether people have memory problems, such as difficulty finding the right words or repeating questions and phrases; problems in daily life, such as difficulty paying bills or being lost; and behavioral or emotional problems, such as becoming aggressive, withdrawn, behaving inappropriately, or wandering off.
The charity’s survey of 1,019 people with dementia and their caregivers found that confusing dementia symptoms with age (42%) was the number one reason people took so long to get a diagnosis. About 26% took more than two years to obtain a diagnosis, and a quarter of those only requested one after reaching a crisis point.
“Asking the same question over and over again isn’t called getting old, it’s called disease,” he told me. “With the pandemic causing diagnostic rates to drop, it is more important than ever to seek help. You don’t have to face dementia alone; we are here to support all those affected.”