Siblings Share Heartbreaking Story Of Sister’s Early-Onset Dementia At 31
Gemma Illingworth, from Manchester, was diagnosed with posterior cortical atrophy (PCA) — a rare form of dementia — at just 28. PCA, often linked to Alzheimer’s, affects vision, spatial awareness, and processing. Gemma quickly lost the ability to see, speak, walk, and swallow, and tragically passed away in November 2024 at age 31.
Her family noticed early signs during the 2021 COVID-19 lockdown when Gemma struggled to read her screen at work. Though initially misdiagnosed with anxiety and depression, a brain scan later confirmed PCA. She soon needed full-time care.
Her siblings, Jess and Ben, described how difficult it was to realize the seriousness of her condition. “We thought she just needed more help — not that she was seriously ill,” Jess said.
To honour Gemma and raise awareness, Jess and Ben ran the London Marathon, supporting Rare Dementia Support (RDS). Their goal is to fund research and support families facing similar situations. “They couldn’t save Gemma,” Ben said, “but they helped us through it.”
