Dementia stigma is leaving thousands in the UK undiagnosed with the disease

Stigma attached to dementia deters many people from seeking help (Picture: Getty)

It is a startling fact: one person develops dementia in the UK every three minutes. By 2040, about 1.6million people will be living with the condition.

But it is the fear of dementia, which is a neurological condition and not a mental illness, that is the greatest threat to those confronted by it.

Add in the fact that dementia diagnoses fell to a five-year low during the pandemic and have been stagnant ever since, and you have a medical timebomb that’s waiting silently in the wings.

A survey of more than 1,100 people by Alzheimer’s Society, released today as part of Dementia Action Week, highlights the stigma still attached to dementia that deters many people from seeking help when they, or their loved ones, first notice symptoms.

One in three people (33 per cent) kept signs of the symptoms to themselves for more than a month, while 23 per cent waited more than six months before talking to a medical professional.

Confusing dementia symptoms with normal ageing was the top reason people stayed silent (64 per cent). But 44 per cent were scared that people would speak down to them or treat them like a child once diagnosed.

Alzheimer's and dementia research, conceptual image

Zoe thought her mother was suffering from anxiety, but an MRI scan provided a conclusive diagnosis (Picture: Getty)

Yet to be forewarned is to be forearmed: timely diagnosis is crucial to managing symptoms. Breakthrough drugs for Alzheimer’s such as lecanemab and donanemab, which have been shown to slow the progression of the disease by 25 and 36 per cent respectively, rely on diagnosing people as early as possible.

‘After 20 years with no new Alzheimer’s drugs, we now have two potential treatments that seem to be able to slow the progression of the disease,’ says Sian Gregory, research information manager at Alzheimer’s Society.

‘But right now, tens of thousands of people are living with undiagnosed dementia, without access to treatments, care and support that a diagnosis can bring. We need to see a revolution in dementia diagnosis.’

Alzheimer’s Society’s campaign ‘It’s not called getting old, it’s called getting ill’ urges people worried about their own or someone else’s memory to seek support using a ‘symptoms checklist’ available on the charity’s online hub.

‘We can’t continue to avoid the D-word – we need to face dementia head on,’ says Kate Lee, chief executive officer at Alzheimer’s Society.

Zoe Antoniades, a writer from west London, saw her mother, Koula, diagnosed with dementia at the age of 69 in 2018 after two years of tests. At first it was thought she was suffering from anxiety, but an MRI scan provided a conclusive diagnosis.

Daughter holding father's aged hands. Comforting and warming

Confusing dementia symptoms with normal ageing was the top reason people stayed silent (Picture: Getty)

‘She had lost her love of baking and then came the repetitive questions,’ says Zoe. ‘One day, my six-year-old nephew said to my mum, “I’ve told you that before – I’m not saying it again”. She sort of laughed about it at the time. But it hurt. And it stuck.

‘There had been signs of dementia since her mid-sixties. Hearing the confirmation filled me with dread. But without a dementia diagnosis, Mum wouldn’t have got the support she so desperately needed. It’s not easy to focus on the positives but with the help of Alzheimer’s Society, we are reminded of these regularly.

Author and former nurse Wendy Mitchell, who developed early-onset dementia in her late fifties, wrote in her book What I Wish People Knew About Dementia: ‘The hardest thing for any human to cope with in life is a lack of control.

‘For those of us living with dementia this is the first thing that we are asked to accept. Except this isn’t necessarily true. Dementia has a beginning, a middle and an end, and there is so much living to do if you – and those around you – can take a positive approach.’

During Dementia Action Week, Alzheimer’s Society is urging anyone worried about themselves or someone they love to contact the charity for support.

Visit alzheimers.org.uk/memoryloss or call 0333 150 3456


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