The loved ones of a young woman who passed away after being diagnosed with a rare and aggressive form of dementia are speaking out, sharing their story in hopes of raising awareness about early symptoms and the condition itself.
Gemma Illingworth, from Manchester, began showing signs of neurological difficulty during the COVID-19 pandemic. In 2021, at just 28 years old, she was diagnosed with posterior cortical atrophy (PCA), a rare form of dementia sometimes referred to as Benson’s syndrome.
According to the University of California, San Francisco (UCSF), PCA is a visual variant of Alzheimer’s disease that affects the brain’s posterior regions, responsible for visual processing, spatial awareness, spelling, and mathematical calculation.
Gemma’s condition progressed rapidly. Over time, she lost her ability to see, speak, walk, and even swallow. She sadly passed away on November 27, 2024, at the age of 31.
Her siblings, Ben and Jess, recently honored her memory by running the London Marathon to raise awareness and funds for Rare Dementia Support (RDS), an organization that had helped their family during Gemma’s illness.
Understanding PCA and Gemma’s Early Symptoms
Although there is still debate among experts about whether PCA is a distinct disease or a subtype of Alzheimer’s, it is widely accepted that Alzheimer’s pathology—specifically amyloid plaques and tau tangles—is present in most PCA cases.
Early symptoms of PCA often include blurred vision, challenges with reading and writing, issues with depth perception, increased sensitivity to light, and difficulty seeing in dim conditions. Due to these symptoms, many people initially visit an eye doctor rather than suspecting a neurological issue.
Gemma experienced many of these visual difficulties. Her siblings said she’d always had a bit of a “scattered” personality, so they didn’t immediately suspect anything serious. But during the lockdown, her vision declined to the point where she couldn’t use her computer—even with glasses—and was forced to leave her job.
Initially signed off work with anxiety and depression, Gemma became increasingly withdrawn and dependent on her family. Her siblings and mother stepped in to help with daily activities like cooking, dressing, and personal hygiene. Eventually, she moved back in with her parents for full-time care.
Jess shared: “Looking back, we might’ve been in denial. We thought she just needed extra support, not that something so severe was happening. There weren’t any clear warning signs that pointed to something as devastating as this.”
In April 2021, Gemma had her first brain scan, and by November that year, after a series of further tests, she received her PCA diagnosis.
Jess added, “Once we got the diagnosis, we knew the road ahead wouldn’t be easy. We just didn’t expect things to move so fast.”
Their mother, Susie Illingworth, described Gemma’s decline as “utterly heartbreaking.”
Raising Awareness and Supporting Others
To honor Gemma and support families like theirs, Ben and Jess took on the challenge of running the London Marathon in April. Their goal was to fundraise for Rare Dementia Support, which had played a crucial role in helping them navigate Gemma’s condition.
Ben said, “We know RDS couldn’t cure Gemma, but they were there for us every step of the way. Now we want to give back and help prevent other families from going through this without support.”
You can donate to their fundraiser through RDS.
If you or someone you know has been affected by dementia or Alzheimer’s, confidential support is available 24/7 through the Alzheimer’s Association at 800-272-3900.