More than one in three people (40%) in the East Midlands who notice symptoms of dementia in themselves or a loved one, wait more than a month before voicing their concerns, an Alzheimer's Society survey to mark Dementia Action Week has revealed.
The charity talked to people worried that they, or a loved one, might have dementia, as well as those with a diagnosis and carers.
While one in three respondents waited over a month to voice their concerns, 26% left it even longer – more than six months – before speaking to a medical professional.
Just 12% brought up the issue straight away, while 17% still haven’t raised their worries after spotting the first symptom.
This delay is having a potentially devastating impact on how soon people are able to get help, prompting Debbie Foster, Area Manager for Alzheimer’s Society to warn: “We can’t continue to avoid the ‘d’ word – we need to face dementia head on."
The charity’s survey of more than 1,100 people found that confusion between dementia symptoms and normal ageing was the top reason people stayed silent (64%), followed by not wanting to worry their loved one (33%), and fears of how their relationships might change (16%).
The survey also revealed there is still a fear of stigma attached to the condition, with 44% saying they were scared people would speak down to them or their loved one after they were diagnosed, or treat them like a child.
In the UK, one person develops dementia every three minutes – that means that by 2040, 1.6m people will be living with the condition. There are currently 900,000 in the UK, including 69,510 in East Midlands, with that figure predicted to increase to 81,760 by 2025.
Breaking the fear of stigma today will lay the foundation for future generations to access vital support at the first time of asking and ensure no-one battles dementia alone. Alzheimer’s Society’s campaign – ‘It’s not called getting old, it’s called getting ill’ – encourages people worried about their memory, or that of a loved one, to seek support in getting a diagnosis, using a ‘symptoms checklist’, available on Alzheimer’s Society’s online hub.
Dementia diagnosis rates hit a five-year low during the pandemic, and have stagnated ever since – leaving tens of thousands of people living with undiagnosed dementia.
Timely diagnosis is crucial to manage symptoms and avoid ending up in crisis. The breakthrough Alzheimer’s drugs lecanemab, which has shown to slow the progression of Alzheimer’s disease by 25%, and donanemab by 36%, rely on diagnosing people with dementia as early as possible.
Debbie Foster added: “As soon as you realise something is not right, come to Alzheimer’s Society - you can use our symptoms checklist to help have that all-important first chat with your GP.
“At Alzheimer’s Society we’re dedicated to providing help and hope to everyone affected by dementia – 9 in 10 people told us they benefitted from getting a diagnosis, helping them access the treatments, support and advice a diagnosis unlocks.
“Alzheimer’s Society services were used over 4.5 million times last year, but we know there are more people out there who need us and don’t know where to turn.”
Resident doctor on ITV's Lorraine and Good Morning Britain, Dr Amir Khan, said: “Despite 900,000 people in the UK having dementia, I still see a huge amount of misunderstanding and stigma about the condition in the surgery. A third of us will go on to develop dementia in our lifetimes – we need to change the idea that getting dementia is inevitable as we age – it’s not called getting old, it’s called getting ill.
“Reaching out to ask for help can feel a scary prospect but it’s better to know. Patients I’ve seen getting a timely, accurate diagnosis have had the chance to benefit from treatments and support, from organisations like Alzheimer’s Society, that they’d have otherwise missed out on.”
This Dementia Action Week, Alzheimer’s Society is urging anyone worried about themselves or someone they love to take the first step and contact the charity for support. Visit alzheimers.org.uk/memoryloss or call 0333 150 3456.
Throughout May, Alzheimer’s Society is asking people to wear a Forget Me Not badge to help people living with dementia get the life-changing support they need and help the charity to be there for more people by donating to our Forget Me Not Appeal. To find out more or to buy a badge visit: alzheimers.org.uk/forgetmenot