Changes in language and vision disturbances are some of the earliest — but too often dismissed — warning signs of young onset dementia that can strike in 30-somethings, experts say.
Dementia is a memory robbing condition most commonly associated with older people, who account for the vast majority of cases.
However, young-onset dementia, where patients are given a devastating diagnosis before the age of 65, is known to be on the rise in Britain.
But experts warn that younger people are largely unaware of the unique warning signs of the condition and how they differ from the memory loss seen in older people.
Writing for The Conversation, Molly Murray, an expert in young-onset dementia from the University of West Scotland, said for many patients the first sign of the condition is a problem with their eyes.
‘Research shows that for around one third of people with young-onset Alzheimer’s disease [the most common form of dementia] , the earliest symptoms they had were problems with coordination and vision changes,’ she wrote.
These problems can manifest as difficulty reading or with coordinating movements, like while getting dressed.
Critically, this occurs without any physical deterioration in eyesight as the problem is instead in how the brain processes visual information.
Changes in language and vision disturbances can be some of the earliest — but too often dismissed — warning signs of young-onset dementia, experts say. Stock image
Another sign of young-onset dementia is language problems.
Examples of these include trouble using the correct words in a sentence, or taking long pauses when speaking.
Patients can also experience strange personality changes, such as loss of a social filter, causing them to appear rude or insensitive.
These signs can also occur in older dementia patients, but they appear to be far rarer, only occurring in about one in 20 cases.
Ms Murray added these changes are also more common among rarer forms of dementia like frontotemporal dementia (FTD).
FTD, while a fraction of overall cases, is far more common among younger patients, accounting for about two in five young dementia diagnoses.
The first signs of FTD are often changes in language and behaviour due to the specific parts of the brain it affects.
Ms Murray said there needs to be greater awareness of the different symptoms young-onset dementia can trigger, both among the public and medics.
Journalist and broadcaster Fiona Phillips, who presented ITV ‘s GMTV between 1997 and 2008, was given the news she had dementia in 2022. She was just 62 at the time
‘The misunderstanding that dementia is a disease of older adults leaves people with young-onset dementia fighting to be heard,’ she wrote.
‘Rarer dementias are also linked to atypical symptoms, which often go missed. This prolongs the diagnostic journey.
She added part of the challenge is that many of the potential symptoms of young-onset dementia can also be attributed to other conditions such as menopause in women, as well as a period of burnout.
Getting an earlier diagnosis for dementia is considered critical at any age, as while the condition is incurable treatments can combat symptoms and sometimes slow progression.
The latest figures suggest almost 71,000 patients are currently living with young-onset dementia, accounting for about 7.5 per cent of all dementia diagnosis.
This is a rise of 69 per cent from the number recorded in 2014.
Sir Terry Pratchett was another hit by a dementia before the age of 65, being diagnosed with a rare type called posterior cortical atrophy (PCA) at 59
Scientists aren’t yet sure of the drivers behind the increase but believe it may be due to the same factors causing an uptick in the condition in all ages.
These include increasing rates of obesity, poor diets and greater awareness of the condition.
Several famous faces have been struck by young-onset dementia, including ITV’s Fiona Phillips, author Sir Terry Pratchett and actor Robin Williams.
Phillips, who presented ITV‘s GMTV (now Good Morning Britain) between 1997 and 2008, was given the news she had dementia in 2022.
Just 62 at the time, she was told her condition was caused by Alzheimer’s disease.
She said she was suffering with brain fog and anxiety in the months before her diagnosis.
Phillips, who has a family history of Alzheimer’s, said she had anticipated a diagnosis would hit her in her 80s.
She has suggested the early hours involved with her 11-year stint of presenting breakfast television could be one reason she developed Alzheimer’s at such a young age.
Oscar-award winning actor and comedian Robin Williams is particularity tragic case of young-onset dementia. Here is pictured with his widow Susan Schneider in 2012 in New York
Phillips was put on a drug trial in an attempt to slow down the symptoms of her condition. In 2023 the presenter said the treatment appeared to be working.
She also noted that one of the biggest changes since her diagnosis is a loss of her ‘filter’ during conversations.
‘I come out with some funny things. I’ve become more honest with people, which I don’t see as a negative thing,’ she previously said.
‘No one has reacted badly, and most of the time I’m complimenting people and saying things I would have thought but not blurted out.’
The late Sir Terry Pratchett is another high profile figure hit by a dementia before the age of 65, diagnosed with a rare type called posterior cortical atrophy (PCA) at 59.
PCA is one of the forms of dementia that primarily affects the brain’s ability to process visual information as the damage occurs at the back of the brain instead of the centre of the organ.
Those with the condition may struggle to read, spell, or spot objects on similar coloured backgrounds such as a white plate on a white tablecloth.
Around 900,000 Britons are currently thought to have the memory-robbing disorder. But University College London scientists estimate this will rise to 1.7 million within two decades as people live longer. It marks a 40 per cent uptick on the previous forecast in 2017
PCA is estimated to account for five per cent of Alzheimer’s cases diagnosed in Britain and is more commonly diagnosed in the under 65s.
In its later stages PCA also starts to affect thinking, memory, and language similar to more typical Alzheimer’s.
Sir Terry, celebrated author of the satirical fantasy Discworld book series, described his condition as ‘the embuggerance’ and was hailed for speaking openly about living with dementia, becoming a patron of the charity Alzheimer’s Research UK.
He died at home died in 2015, ‘with his cat sleeping on his bed, surrounded by his family’, according to his publisher.
Oscar-award winning actor and comedian Robin Williams is a particularly tragic case.
The Hollywood star by suicide in 2014, aged just 63, after he started suffering hallucinations and delusions believed to be caused by Lewy body dementia.
This type of dementia accounts for a minority of cases, about one in 10.
It’s caused by tiny clumps of protein, called Lewy bodies, appearing in the nerve cells in the brain that affect their ability to function correctly.
But they can also be a sign of dementia — the memory-robbing condition plaguing nearly 1million Brits and 7million Americans
This process can lead to visual and auditory hallucinations like those Williams experienced, as well as general confusion, tremors, fainting, depression and anxiety and violent movements.
As with Alzheimer’s disease, patients can also experience problems with understanding, thinking, memory and judgement.
Experts are still trying to unpick why Lewy body dementia develops in some people and if there is a risk of it running in families.
Williams’ widow Susan Schneider Williams said learning of her husband’s dementia diagnosis after his death came as a ‘relief’ after years of trying to figure out what was wrong.
‘I was relieved it had a name. Robin and I had gone through this experience together, really being chased by an invisible monster.’
Williams was known to be struggling with the condition while filming, with Night in the Museum’ director Shawn Levy recalling: ‘Robin was struggling to remember lines and to combine the right words with the performance.
‘Robin would call me saying is it usable, is any of this usable. I saw his morale crumble. I saw a guy who wasn’t himself and he thought that was unforgivable.’
When a post-mortem examination finally revealed the extent that Lewy bodies had on Williams’ brain, medics reported being shocked that he could even ‘walk or move’.
The outlook for Lewy body dementia varies by patient, but the average survival time is five to seven years after diagnosis.
Like other forms of the condition it is progressive, meaning it gets worse over time and many patients will eventually need help looking after themselves.
Dementia affects an estimated one million people in the UK.
Recent analysis by the Alzheimer’s Society estimated the overall annual cost of the dementia to the UK is £42billion a year, with families bearing the brunt.
An ageing population means these costs—which include lost earnings of unpaid carers—are set to soar to £90billion in the next 15 years.
A separate Alzheimer’s Research UK analysis found 74,261 people died from dementia in 2022 compared with 69,178 a year earlier, making it the country’s biggest killer.
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