“Tragic Loss: Young Woman, 31, Passes Away from Early-Onset Dementia with Subtle Signs”

A fiercely independent young woman died after a ‘heartbreaking’ dementia diagnosis that could have been spotted in childhood. 

Known as ditsy by her siblings, Gemma Illingworth, who hails from Manchester, had always faced challenges with her vision, coordination, and time-keeping abilities since she was young.

But it was only at 28-years-old that the devastating cause was revealed to be a rare form of dementia called posterior cortical atrophy (PCA). 

This form of the memory robbing condition interferes with the area of the brain responsible for visual processing. 

Following her diagnosis in 2021, Gemma’s condition deteriorated rapidly within a few months, significantly affecting all aspects of her daily life to the point where she could no longer manage independently.

Her older sister, Jess, aged 29, reflected, ‘Perhaps we were somewhat in denial, I’m not entirely sure, but we never truly considered the severity of her illness. We simply thought she needed a little more assistance.’

‘There weren’t enough tell-tale signs to think she had such a horrendous disease,’ she added. 

Before her condition drastically deteriorated, Gemma lived a ‘normal’ life and studied at the Leeds College of Art before moving to London Metropolitan University. 

Before her diagnosis, Gemma lived a completely normal life, attending university in Leeds and London before moving to New York

Gemma and her parents Andrew and Susie, alongside siblings Jess and Ben celebrating her birthday at her parents house in 2023

Ben (left), Jess (right) and Gemma (centre) on a trip to Dublin, 2023

While signs of the condition had been present since childhood it was only during the Covid lockdown in 2020 that she took notice of her vision getting worse. 

She was signed off work in December that year for anxiety and depression and eventually stopped working altogether due to ongoing problems with her sight and mood.

Despite this, she continued to live independently away from home.

However, she required increasing support from her friends and family to do basic tasks, such as getting dressed and attending appointments on time. 

Her brother, Ben, 34, said: ‘Gemma didn’t fully understand what was going on, and she thought she could live a normal life but she couldn’t… before we knew it she couldn’t live unassisted.’

Gemma’s mother, Susie Illingworth, would regularly check in on her, to make sure that the shower and oven were turned off, and that her clothes were on properly. 

At this point, Gemma started call her mum up to 20 times a day for support. 

Eventually, Gemma was forced to move back home when she could no longer carry out everyday tasks such as making the bed, getting dressed and keeping up with her engagements. 

Gemma had two siblings, Ben and Jess, who were devastated by the diagnosis, along with her parents, Andrew and Susie

When Gemma didn’t show any signs of improvement, she went for a brain scan, in April 2021, which revealed something was ‘substantially wrong’ with her brain. 

Doctors initially believed her symptoms were caused by a brain tumour, but further scans and spinal fluid tests at University College London led to a dementia diagnosis. 

Gemma was then specially diagnosed with PCA, in November 2021. 

Her sister said the family had been ‘devastated’ by the diagnosis, but Gemma was ‘ecstatic’, because she thought a diagnosis would lead to treatment. 

‘She didn’t really know what it meant, but that was obviously a blessing in disguise’, Jess said. 

Following her diagnosis, Gemma’s condition steadily declined, until she was unable to feed herself, swallow, speak or walk. 

However, she never stayed in hospital and was cared for at home by her family. 

Recalling these final months, Ben said: ‘Up until the very end, there were parts of her that sort of remained… you could have a lot of difficult hours, but you could still get a laugh out of her.’ 

Gemma’s siblings and her best friend ran the London Marathon last month to raise funds for National Brain Appeal and Rare Dementia Support.

Gemma’s problems with day-to-day tasks were initially dismissed as her just being ‘ditsy’ – but they can also be possible signs of dementia

‘She had a bit of wicked sense of humour which definitely didn’t go away,’ he added. 

Gemma died age 31 on November 27 last year, surrounded by her family. 

Her siblings, along with her best friend Ruth Pollit, ran the London Marathon last month to raise money for the National Brain Appeal and Rare Dementia Support.

Ben said: ‘We’re trying to raise as much money for RDS so that they can try and prevent stuff like this happening again.

‘They couldn’t cure Gemma, but they helped us navigate it the best way we could.’

Jess added that the end goal was to ‘do it for Gemma, and make her proud’. 

They have so far raised over £19,000 via an online fundraiser. 

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 have said.

Despite most commonly being associated with older people, young-onset dementia, where patients are given a devastating diagnosis before the age of 65, is known to be on the rise in Britain.

 University College London scientists estimate 1.7 million Britons will suffer with dementia  within two decades as people live longer. 

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.

Mood-disturbances and personality changes are also common in PCA patients, which can cause them to appear rude or insensitive. 

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.

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.