14.06.2024

Third of people who notice signs of dementia in themselves keep fears hidden for more than a month

A third of people who notice signs of dementia in themselves or a loved one keep their fears to themselves for longer than a month.

Just 15 per cent speak to someone else about the issue straight away, despite the benefits of early diagnosis for managing the condition, which leaves them facing fears for the future alone.

Alzheimer’s Society surveyed 1,137 adults up to the age of 85, who had diagnosed dementia, were carers for someone with a dementia, or were worried they or someone they loved may have the condition.

The top reason people stayed silent after noticing the first signs of dementia, or detecting them in a loved one, was that they confused the symptoms with simply getting older.

But 44 per cent of people surveyed said they were worried they or a loved one would be talked down to or treated like a child if they were diagnosed with dementia.

The charity learned 11% of people who had detected their first dementia symptom had still not discussed it with anyone else at the time of filling out the survey [File image]

The charity learned 11% of people who had detected their first dementia symptom had still not discussed it with anyone else at the time of filling out the survey [File image]

Kate Lee, chief executive of Alzheimer’s Society, said: ‘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.’

The charity learned 11 per cent of people who had detected their first dementia symptom, or the first symptom of someone close to them, had still not discussed it with anyone else at the time of filling out the survey.

This delay in addressing the problem has a knock-on impact on how soon people can get help.

The survey found 23 per cent of people waited longer than six months after the first dementia symptom before speaking to a medical professional.

While 64 per cent of people who kept quiet about dementia symptoms did so because they confused them with normal ageing, a third said they did not want to worry a loved one.

Meanwhile, 16 per cent were concerned about how it would affect their relationships, according to the survey, conducted by the firm Yonder Data Solutions for Alzheimer’s Society to mark Dementia Action Week.

Alzheimer’s Society has launched a new campaign – with the title ‘it’s not called getting old, it’s called getting ill’ – to encourage people worried about their memory, or the memory of someone close to them, to seek support in getting a diagnosis, including by using the charity’s online symptoms checklist.

Kate Lee, chief executive of Alzheimer¿s Society, has said we 'need to face dementia head on'

Kate Lee, chief executive of Alzheimer’s Society, has said we ‘need to face dementia head on’

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.

In the UK, one person develops dementia every three minutes – meaning that by 2040, 1.6 million people will be living with the condition.

Kate Lee said: ‘At Alzheimer’s Society we’re dedicated to providing help and hope to everyone affected by dementia – nine in 10 people told us they benefited from getting a diagnosis, helping them access the treatments, support and advice a diagnosis unlocks.’

The promising potential Alzheimer’s drugs lecanemab and donanemab, which slow down memory loss and may in future be widely available to people in the UK, rather than just in clinical trials, are shown to work better in people who are diagnosed earlier.

Dr Amir Khan, television doctor on ITV’s Lorraine, said: ‘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 they’d have otherwise missed out on.’

It took me nine months to use the ‘D-word’

It took Simon Ruscoe almost three years to say out loud that he was struggling with his memory.

After being diagnosed with early-onset dementia in January 2020, it took a further nine months for him to use the ‘D-word’.

The 58-year-old, who worked as a senior manager for a major IT company, first began to show signs of frequent memory lapses from August 2016, when he was taking wrong turns while driving, and losing his keys, or forgetting entire conversations which had just happened.

But the father-of-two was reluctant to accept what was happening — at first not understanding he may have memory issues, because he was confused, but then later becoming defensive if anyone suggested there might be a problem.

It took Simon Ruscoe almost three years to say out loud that he was struggling with his memory. After being diagnosed with early-onset dementia in January 2020, it took a further nine months for him to use the 'D-word'. Pictured with wife Emma

It took Simon Ruscoe almost three years to say out loud that he was struggling with his memory. After being diagnosed with early-onset dementia in January 2020, it took a further nine months for him to use the ‘D-word’. Pictured with wife Emma

Mr Ruscoe, a father of two, said: ‘I didn’t struggle saying the word dementia because I was ashamed or couldn’t accept it.

‘It was that if I said it out loud, it would become real.’

His wife, Emma, said: ‘Simon was always the perfect husband and father — the main breadwinner who looked after us all.

‘I think he thought that by having dementia he would be letting us down.

‘We are a team and he didn’t want not to play his part in the team.

‘But it was important to discuss the diagnosis and work out ways to live with it.’

The couple, who have been married for 28 years and live in Solihull with their sons, Alex, 27, and Oliver, 21, had a long journey with dementia.

After his memory loss was judged to be stress by medical professionals in 2016, Mr Ruscoe refused to see a doctor again for two years.

Now, he still can become upset if the subject of his dementia comes up, because of the parts of his life he has lost.

But Mrs Roscoe said: ‘It is like a tug of war, where the disease is pulling Simon one way and our family are pulling him back.

‘We lose pieces of the puzzle but he is still the same person. He can do things like shower and wash his hair if we remind him how to do it, because he has forgotten the steps, and he can still socialise, although he may start to repeat things after five minutes of speaking.

‘We won’t let dementia become the D-word like cancer used to be the C-word.

‘It is part of our lives, but we’ve proved it’s possible to live well with dementia.’

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