Woman dies from dementia aged 31 as siblings speak out about early warning signs

The family of a woman who passed away as a result of being diagnosed with a rare form of dementia has opened up about thinking she simply 'required a bit more support' rather than having such a 'horrendous disease'.

In 2021, Gemma Illingworth, from Manchester, was diagnosed with a rare form of dementia - called posterior cortical atrophy (PCA) - at the age of just 28.

PCA 'also called Benson’s syndrome, is a rare, visual variant of Alzheimer’s disease', USCF states.

"It affects areas in the back of the brain responsible for spatial perception, complex visual processing, spelling and calculation," it adds.

Following her diagnosis, Gemma ended up losing her ability to see, swallow, speak and walk and on November 27, 2024, she passed away aged 31.

Her siblings - who recently ran the London Marathon in her memory - have since opened up about her experience with the condition in a bid to raise important awareness.

Gemma Illingworth was diagnosed with PCA at the age of 28 (Collect/PA Real Life)

What posterior cortical atrophy is and Gemma's early symptoms of it

Although the Alzheimer's Association notes it's 'not known whether posterior cortical atrophy is a unique disease or a possible variant form of Alzheimer’s disease', USCF states: "In the vast majority of PCA cases, the underlying cause is Alzheimer’s disease, and the brain tissue at autopsy shows an abnormal accumulation of the proteins amyloid and tau that form the plaques and tangles seen in Alzheimer’s disease."

It explains early symptoms of the condition can 'include blurred vision, difficulties reading (particularly following the lines of text while reading) and writing with non-visual aspects of language preserved, problems with depth perception, increased sensitivity to bright light or shiny surfaces, double vision and difficulty seeing clearly in low light conditions' - symptoms which can often lead to a patient going to an eye doctor at first.

Other symptoms can include difficulty accurately 'reaching out to pick up an object' alongside getting 'lost while driving or walking in familiar places, misrecognition of familiar faces and objects, and rarely visual hallucinations' alongside coordinated movements.

Gemma's brother, Ben, and sister, Jess, told PA Real Life, she'd struggled with many of these symptoms anyway as she'd always been a bit 'ditsy'.

However, in the Covid-19 lockdown in 2021 when she couldn't see or process her computer screen - unaided by glasses and becoming so bad she had to give up work - they knew something was wrong.

Gemma's siblings and best friend ran the London Marathon to raise awareness of PCA (Collect/PA Real Life)

How the family hope to raise awareness of posterior cortical atrophy

Gemma was signed off work with anxiety and depression but became increasingly insular.

She ended up leaning on family for support with showering, cooking and making sure her clothes were on properly and eventually had to move back home.

Jess continued: "Maybe we were slightly in denial, I don’t really know, but it was never in our minds that she was actually ill. It was just that she required a bit more support.

"There weren’t enough tell-tale signs to think that she had such a horrendous disease."

In April 2021, Gemma underwent a brain scan and several scans and tests later, she was diagnosed with PCA in November that year.

"Once she had the diagnosis, it was really only going to go one way. We didn’t know it was going to be that quick," Jess added.

Gemma's mom, Susie Illingworth, reflected: "The demise was utterly heartbreaking."

Last month, Jess and Ben ran the London Marathon in honor of Gemma and to raise awareness of posterior cortical atrophy - which currently has no cure.

Gemma sadly passed away at the age of 31 (Collect/PA Real Life)

Ben resolved: "We’re trying to raise as much money for RDS [Rare Dementia Support] so that they can try and prevent stuff like this happening again.

"They can put their arms around families like ours. They couldn’t cure Gemma, but they helped us navigate it the best way we could."

You can donate to the fundraiser here.

If you've been affected by dementia or Alzheimer's and would like to speak with someone in confidence, contact the Alzheimer's Association via 800.272.3900 open 24 hours seven days a week.