Avoiding the ‘d’ word: More than one in four in South East wait over a month to voice dementia worries

More than one in four people (27%) in the South East 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 more than one in four respondents waited over a month to voice their concerns, almost as many (23%) left it more than six months before speaking to a medical professional.

Just 18% brought up the issue straight away, while 12% 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 Carrie Homes, Area Manager for Alzheimer’s Society in the South East, to warn: “We can’t continue to avoid the ‘d’ word – we need to face dementia head on.

“This Dementia Action Week we want everyone to know there is support out there if you’re confused about symptoms, or don’t know how to have that first tricky conversation.”

Stanley Pearce from Saltdean, near Brighton, worked in the clothing industry and also played semi-professional football for a number of clubs.

The 76-year-old explained: “Dementia has affected both my wife Ann and I because although the disease impacts me, Ann provides support which can be challenging.

“I was diagnosed with dementia in 2021. It was hard to hear but not a body blow as I knew something was wrong. It is important to know if you have dementia because your lifestyle must be adjusted and once you know what the issue is, you can put measures in place to ensure the impact on your daily life is minimised.

“It was a sense of relief getting the diagnosis because it answered many questions and meant there was something to act upon.

“It is vital to talk about dementia because it won’t help to bottle it up. My message to others starting their journey with dementia would be that there is light at the end of the tunnel. Life can be enjoyed after a diagnosis. I played football for various teams, have been following Tottenham for 71 years and have a soft spot for Brighton after decades living here, and still appreciate watching matches on TV.”

The charity’s survey of more than 1,100 people found that confusion between dementia symptoms ands 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%).

Worryingly, 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 an estimated 134,570 across the South East.

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.

Carrie Holmes 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. Help us 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