She’required a bit more help’ instead of having such a ‘horrendous condition,’ according to the family of a lady who died after being diagnosed with a rare form of dementia.
At the age of just 28, Gemma Illingworth of Manchester received a diagnosis of posterior cortical atrophy (PCA), an uncommon type of dementia, in 2021.
According to USCF, PCA, also known as Benson’s syndrome, is a rare visual form 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.
Gemma lost the ability to see, swallow, speak, and walk after receiving her diagnosis, and she died on November 27, 2024, at the age of 31.
In an effort to increase vital knowledge, her siblings, who recently participated in the London Marathon in her honour, have since talked candidly about her struggle with the illness.

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’, UCSF 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.”
According to the article, the condition’s initial symptoms 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.” These symptoms are frequently what prompt a patient to see an eye doctor.
Additional symptoms may include misrecognition of familiar individuals and objects, trouble precisely “stretching out to pick up an object”; becoming “lost when driving or strolling in familiar settings, and infrequently, visual hallucinations” in addition to coordinated movements.