A young woman from Manchester has tragically passed away at just 31 after developing a rare and aggressive form of dementia. Gemma Illingworth was initially diagnosed with posterior cortical atrophy (PCA) at the age of 28, a condition that led to the gradual degeneration of the parts of her brain responsible for visual and spatial processing. The disease rapidly stripped her of her independence, rendering her unable to complete simple daily tasks. Just three years after her diagnosis, Gemma died at home surrounded by loved ones.
Her siblings, Ben and Jess Illingworth, alongside lifelong friend Ruth Pollitt, have channelled their grief into charitable action. Mere months after Gemma’s death in November last year, the trio completed the London Marathon in her memory, raising funds for the National Brain Appeal and Rare Dementia Support (RDS). Their campaign has so far gathered more than £19,000 to support vital research and help affected families.
Gemma’s story is as heartbreaking as it is rare. Her family recall that, from a young age, she often seemed “ditsy” and struggled with coordination, vision and simple tasks like telling the time. However, these traits were attributed to her eccentricity, and never raised serious health concerns. It was only during the first Covid-19 lockdown, when forced to work from home, that her difficulties became impossible to ignore.
Unable to process information on her computer screen, Gemma found herself struggling to keep up with her insurance job. By December 2020, she was signed off work for anxiety and depression, yet her condition continued to decline. Neurological tests soon followed, eventually leading to her devastating diagnosis – something both she and her family struggled to comprehend at first.
Speaking to PA Real Life, her brother Ben described the difficult adjustment. “Initially, Gemma didn’t really grasp what was happening. She thought things might return to normal, but sadly, that wasn’t to be,” he explained. As the illness progressed, Gemma lost the ability to feed and dress herself, required close monitoring, and called her mother constantly for reassurance and help.
Despite their best efforts, Gemma’s family could only provide support as she became increasingly dependent. Her mother described the slow loss as “utterly heartbreaking,” while her sister Jess called PCA “the most cruel disease” imaginable. Having previously led a vibrant life – studying in Leeds and London, and working abroad – Gemma was most comfortable when she could be as independent as possible, but the illness gradually stole these freedoms.
Medical investigations initially suggested a brain tumour before PCA was diagnosed by specialists at University College London Hospital in late 2021. Though the family were devastated by the news, Gemma was momentarily relieved to finally speak about her struggles and believed that a solution might be devised. Jess reflected that perhaps it was fortunate Gemma did not understand the full ramifications of her diagnosis.
The family’s ordeal unfolded entirely at home, as Gemma continued to be cared for by those closest to her. According to Ben, even towards the end, some aspects of Gemma’s personality shone through, notably her distinctive sense of humour. “You could always get a laugh from her,” he said, remembering the moments of levity amid the hardship.
The decision to participate in the London Marathon, which was made before Gemma’s death, offered them both a focus and a tangible means to honour her memory. The siblings and Ruth had already completed a sponsored walk and raised significant funds for research. Ben expressed their hopes that the money would help families like theirs navigate similar challenges and, one day, bring about advances that could prevent others from experiencing such a loss.
Their story resonated with many supporters, as reflected in the donations the team have amassed. For the Illingworths, the marathon was not just a tribute to a sister and friend, but an act of hope and resilience – a commitment to ensuring that Gemma’s memory lives on, and that support for research into rare forms of dementia continues to grow.
For those interested in supporting their campaign or learning more about their fundraising, the family has created a page at www.justgiving.com/page/teamjrb. Their efforts stand as a moving reminder of the profound impact dementia can have at any age, and of the enduring strength families can draw on in the face of tragedy.