The family of a young woman who succumbed to a rare form of dementia reflects on initially perceiving her condition as merely needing extra support, rather than recognizing it as a serious disease.
Gemma Illingworth, hailing from Manchester, was diagnosed in 2021 with a rare dementia variant known as posterior cortical atrophy (PCA) at just 28 years old.
According to USCF, PCA, or Benson’s syndrome, is a rare visual variant of Alzheimer’s disease. “It affects areas in the back of the brain responsible for spatial perception, complex visual processing, spelling and calculation,” it states.
Eventually, Gemma lost her abilities to see, swallow, speak, and walk, leading to her passing on November 27, 2024, at the age of 31.
Her siblings, who recently completed the London Marathon in her honor, have shared their journey to help raise awareness about the condition.
The Alzheimer’s Association mentions that it’s unclear if posterior cortical atrophy is an individual illness or a variant of Alzheimer’s, but USCF clarifies: “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.”
Initial symptoms may include issues with vision, reading, writing, depth perception, and sensitivity to light, often leading patients to first consult an eye doctor.
Further symptoms may involve challenges in picking up objects, becoming disoriented in familiar areas, misrecognizing people and items, and rare visual hallucinations, along with coordinated movement issues.
Gemma’s siblings, Ben and Jess, told PA Real Life that Gemma had experienced many of these symptoms, though they initially attributed them to her being a bit ‘ditsy’.
During the Covid-19 lockdown in 2021, when Gemma struggled to see or use her computer screen—even with glasses—and had to stop working, her family realized something was wrong.
Despite being signed off work due to anxiety and depression, Gemma became increasingly withdrawn.
She relied on her family for daily activities like showering and cooking and eventually moved back home.
Jess explained: “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 brain scans, which led to her PCA diagnosis 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 mother, Susie Illingworth, reminisced: “The demise was utterly heartbreaking.”
Last month, to honor Gemma and raise awareness for posterior cortical atrophy—a condition with no current cure—Jess and Ben participated in the London Marathon.
Ben remarked: “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’re dealing with dementia or Alzheimer’s and need to talk to someone, reach out to the Alzheimer’s Association at 800.272.3900, available 24/7.