- Karen Lewis, 51, a mother-of-three, has had dementia for at least ten years
- In her early 40s she was told nerve damage was making her drop things
- In her late 40s, she was told the menopause was causing her depression
- She was only diagnosed with Alzheimer’s after a memory test this year
- Some believe 100,000 people in their 30s, 40s and 50s may have dementia
Lucy Elkins for the Daily Mail
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Karen Lewis, 51, has early onset dementia. She has had symptoms since her late 30’s
Mum-of-three Karen Lewis is used to the reaction she gets when she tells people she has dementia. ‘They normally say: ‘But you don’t look old enough.’ I just shrug because I didn’t think I was old enough either.’
Karen, who was diagnosed in January this year, just days after her 51st birthday, has, in fact, had the condition for at least ten years – yet during this time her symptoms were repeatedly put down to other ailments.
In her early 40s, when she started dropping objects a lot, she was told by a doctor that she had nerve damage in her arm and was given a splint. In her late 40s, when she felt uncharacteristically depressed, she was told by another doctor that she was going through the menopause.
And last year, when she was struggling to concentrate at work, she was told by a nurse that she was suffering from stress.
It was only this year, when Karen was given a memory test, that the true cause of all of her problems was revealed: she had Alzheimer’s disease – the most common form of dementia.
‘When the doctor told me, my partner Jason was with me and we couldn’t speak for a few minutes,’ says Karen, who until recently worked dispensing medicines in a chemist. ‘We were both so shocked – I felt as if I’d been hit sideways. My first thought was about my children – my sons David and Sam are 21 and 27, but my daughter Amy is only 16. How long had I got before I stopped remembering who they were? Would I get the chance to enjoy watching them have children?
‘The doctor couldn’t tell me. Hopefully it will be years.’
There are believed to be nearly 850,000 people living with dementia in the UK. Yet while it tends to be thought of as an elderly person’s disease, a recent report from The Alzheimer’s Society warns that far more people under the age of 65 have the condition than was previously thought.
In fact, some experts believe as many as 100,000 people in their 30s, 40s and 50s may have dementia.
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Hilda Hayo, a consultant dementia nurse and chief executive of the charity Dementia UK, says: ‘The previous estimate of 16,000 cases didn’t take into account the people who hadn’t been for help or who hadn’t been diagnosed.
‘Far more people are now being diagnosed and more forms of dementia have now been identified, so the true figure is likely to be four or five times as high as that.’
Here, we examine the issues surrounding dementia in the under-65s, and the symptoms to look for.
In her early 40s, when she started dropping objects a lot, she was told by a doctor that she had nerve damage in her arm
BAD MOODS CAN BE AN EARLY SIGN
Dementia is an umbrella term for a group of diseases that cause damage to the brain, leading to progressive difficulties with memory, language and problem-solving.
It can manifest itself in trouble concentrating, an uncharacteristically quick temper or memory issues.
Like Karen, patients are often told that they are suffering with stress before they finally receive a correct diagnosis.
Some sufferers might also have ‘praxia’ – difficulties in coordinating movement. They might find, for example, that they have problems putting on a jacket or using a toothbrush, or that they often drop things, as Karen did. They might also have problems with spatial awareness and get lost when driving, for example.
Praxia doesn’t occur with all forms of dementia – there are around 100 different types – but it can be an early sign of certain forms, such as Alzheimer’s disease, which is the most common.
This type is caused by the build-up of a protein called amyloid, which forms as tangles or plaques around brain cells, ultimately destroying them.
HOW GPs MISS IT
Diagnosing dementia is never an exact science but it is often picked up later in the under-65s, as it is usually the last thing a GP suspects in a younger person.
‘People with early-onset dementia or their partners tend to go back and forth to their GP many times before they get diagnosed,’ says Ms Hayo. ‘Someone of 80 or older will wait on average one to two years after first showing symptoms before being diagnosed, but a person under 65 waits four to five years.’
Dementia affects younger and older people in the same way – but while the vast majority of elderly sufferers have Alzheimer’s disease, younger people are more likely to have another form.
416,000Â
The estimated number of undiagnosed dementia sufferers in England alone
‘Alzheimer’s is still one of the most common types in under-65s, but we also see others,’ says Dr Richard Perry, a neurologist who runs a memory clinic at Charing Cross Hospital, London.
Younger sufferers often acquire a form that affects the frontal lobe of their brain, adds Ms Hayo. ‘The frontal lobe deals with social function, so people with this form will show changes to their personality first, such as irritability, having a shorter temper or being rude. Their memory won’t be affected until a relatively late stage of the disease, years later.’
The problem is that the public – and GPs, too – tend to think dementia always means memory loss.
‘I hear from many people who had early signs of dementia, but were told they were suffering with stress, anxiety or depression,’ she adds.
MARITAL STRIFE A COMMON SYMPTOM
AS WE’VE heard, dementia affecting the frontal lobe of the brain can cause marked changes in personality, such as irritability or the development of a quick temper. But Ms Hayo says: ‘In some cases when people develop these symptoms, they are told they have relationship problems and need to go to marriage counselling.
‘It’s not until their disease progresses and they suffer with memory problems that they get referred on and a diagnosis is made. Unfortunately, some people are divorced before the truth comes out.’
There is no definitive test for dementia. Normally a diagnosis is made after putting someone through memory tests – for example, asking them to repeat an address – or concentration tests, such as seeing if they can subtract seven from a series of numbers.
Later, when she felt uncharacteristically depressed, she was told by another doctor that she was going through the menopause
The other test is simply seeing how they progress as their condition inevitably gets worse over time.
But Dr Perry says: ‘There can be other causes of memory loss, such as stress, anxiety, alcohol or medication.’
Last week a controversial NHS scheme was revealed in England that pays doctors £55 for each dementia diagnosis. Its aim is to try to prevent delays in diagnosis and treatment.
‘Getting the right diagnosis is crucial,’ says Dr Perry. ‘In the past two months I’ve seen a 58-year-old man who was told he had stress when a scan revealed he had Alzheimer’s, and a 55-year-old woman who had been told she had Alzheimer’s and had taken early retirement from her job when actually she had anxiety.’
When Karen sought help in September last year, she was told she was stressed. ‘I went to my GP as I was getting upset that colleagues at the pharmacy where I worked were making out that I was being lazy because my work rate had dropped. The truth was, I just couldn’t concentrate,’ she recalls.
‘I always had a nasty feeling that I had forgotten how many pills I had put into the bottle, so I was constantly checking, double-checking and triple-checking.’
Her GP referred her to a psychiatric nurse, who insisted Karen was stressed and depressed.
‘I told her I wasn’t, but she wouldn’t listen,’ says Karen. ‘So I went to see a psychiatrist, who said: ‘You’re not stressed or depressed. I don’t know why you’ve been referred to me.’ It was so frustrating.’
Karen then went to another GP, who referred her to a memory clinic, and the right diagnosis was made.
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