Young-onset dementia, where patients are given a devastating diagnosis before the age of 65, is on the rise in Britain.
The condition, which accounts for almost one in 10 of all dementia diagnoses, has been thrust into the spotlight after actress Pauline Quirke announced she will step back from professional duties due to the memory-robbing disorder.
The Birds Of A Feather star, now 65, was diagnosed with dementia back in 2021 when she was just 61.
But she isn’t the only famous face to be struck by young-onset dementia, with others including ITV’s Fiona Phillips, author Sir Terry Pratchett and actor Robin Williams.
And it’s not just celebrities — experts have noted a rise in young people in the UK being hit with the disease.
The latest figures suggest almost 71,000 people in Britain 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 figure recorded in 2014.
Scientists aren’t yet sure of the drivers behind the rise, but they believe it may be due to the same factors causing an uptick in the condition in all ages.
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
This includes the ageing population, increasing obesity, poor diets and greater awareness of the condition leading to more diagnoses.
Journalist and broadcaster Fiona Phillips, who presented ITV’s GMTV (now Good Morning Britain) between 1997 and 2008, was given the news she had dementia in 2022.
Phillips, 62 at the time and a mother of two, was told her dementia was caused by Alzheimer’s disease — the leading cause of dementia accounting for about six in 10 cases nationally.
Like early onset dementia, cases of Alzheimer’s among under-65s are rare, accounting for about one in 20 cases.
Phillips said she was suffering with brain fog and anxiety in the months before her diagnosis and noted that her mother, father, grandparents and uncle also been hit by the disease.
Around one in 10 early onset dementia cases are thought to be a result of genetics, according to research.
Speaking shortly after her diagnosis, Phillips said she had anticipated a diagnosis would hit her in her 80s not her early 60s.
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.
Some research suggests there may be merit in this with studies finding people with a genetic risk of Alzheimer’s are slightly more likely to describe themselves as ‘morning people’.
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.
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
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.
Unlike the more famous memory-robbing form, PCA 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.
Sufferers of PCA can still technically have perfect eyesight but the brain struggles to process the information.
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.
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.
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
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 particularity tragic case of young-onset dementia.
Williams died 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 dementia cases, accounting for 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.
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.
Hilary Evans-Newton, Chief Executive of Alzheimer’s Research UK, said in a statement on Tuesday: ‘We are saddened to hear of Pauline’s diagnosis and send our best wishes to her’
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 bodies dementia varies by patient, but the average survival time is five to seven years after diagnosis.
Like other forms of dementia, it is progressive, meaning it gets worse over time and many patients will eventually need help looking after themselves.
But they can also be a sign of dementia — the memory-robbing condition plaguing nearly 1million Brits and 7million Americans
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
Dementia affects an estimated one million people in the UK and has a variety of causes, such as Alzheimer’s or reduced blood flow to the brain following a stroke.
The disease is currently incurable, but early diagnosis is considered critical for better outcomes as treatments can combat symptoms and sometimes slow down progression.
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.
Around 944,000 in the UK are thought to be living with dementia while the figure is thought to be around 7million in the US.
Memory problems, thinking and reasoning difficulties and language problems are common early symptoms of the condition, which then worsen over time.
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.
