RDS member interviews on LBC
For Rare Dementia Support member Christopher Bailes, caring for his wife Sue showed him just how different the experience of cancer and dementia can be. Before being diagnosed with posterior cortical atrophy (PCA), Sue survived both breast cancer and bladder cancer, experiencing treatment that Christopher describes as “exemplary”. When she later developed PCA, a rare form of dementia affecting vision and spatial awareness, he found that navigating her diagnosis and the challenges it brought was a very different experience.
“It’s chalk and cheese, cancer care and dementia care… I grew up in a time that cancer was a word that was whispered. Dementia, I think, is in that position.”
Sue’s condition affected her balance and her ability to understand where her body was in relation to the world around her. She reached the point where she could no longer get in and out of a car with ease and, as a teacher, she lost the ability to write. Eventually, Christopher felt they could no longer leave the house.
Sue sadly died last November. Christopher was interviewed on LBC recently, where he described the challenges of a rare dementia diagnosis as “so profound and all-encompassing”.
But specialist support can make a real difference. Christopher has found help through Rare Dementia Support, including our bereaved carers group, and recently visited us at The Hilary and Galen Weston Rare Dementia Support Centre in London.
The Centre brings people with a rare dementia, their families and carers together in a welcoming environment, alongside specialist support, research and education. It is a place where people can find understanding, connection and support from a team with expertise in rare dementia. And our ambition goes beyond the Centre itself. We hope it can be the beginning of something bigger: a model that could become to dementia what Maggie’s Centres have become to cancer care, creating welcoming spaces where people affected by dementia can find the specialist support they need.