Worthing woman opens RHS Chelsea Flower Show Garden

Helena Clarke, 58, who was diagnosed with posterior cortical atrophy (PCA) in 2020, opened The National Brain Appeal’s “Rare Space” garden at the prestigious flower show alongside Stephen Graham OBE yesterday.

The criticially acclaimed actor worked with the charity when he was researching young-onset Alzheimer’s for his character Tony in the Channel 4 drama Help.

Designed by award-winning landscape designer Charlie Hawkes, the garden aims to create a space that can be enjoyed by people living with rare forms of dementia, particularly visual and spatial forms of the disease.

Helena and David Clarke are given a tour of Charlie Hawkes Rare Space Garden at the RHS Chelsea Flower Show (Image: Ginger Horticulture)

“This garden allows those living with visual and non-memory-led dementias to easily navigate a custom-designed outdoor space so it becomes an accessible and stimulating environment for them to enjoy and move around with greater independence,” said Charlie.

“One in six people in the UK are affected by neurological conditions so it's important to support the exceptional work of The National Brain Appeal in funding world-leading research and supporting people with neurological conditions.

“I hope the garden will increase the feeling of wellbeing and connectedness of people living with rare dementias and other neurological conditions.”

Stephen Graham OBE with Helena and David (Image: Ginger Horticulture)

Having been a qualified speech and language therapist, counsellor and education welfare officer, Helen, who is from Worthing, had been aware something wasn’t right for a few years before her diagnosis.

“There were so many things that I used to do without thinking that I was now struggling with and that no longer made sense to me,” she said.

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It was on a walking holiday that her husband David noticed that Helena couldn’t see the white plate sitting on a white tablecloth in the hotel dining room. He then noticed at home that when Helena drew the curtains in their living room, she would often miss one.

 “We have a bay window with four curtains but Helena would draw just three of them, missing out on the left-hand side one - it was like she couldn’t see it,” he said.

When she was eventually diagnosed with PCA, she was told that it wasn’t her eyes that couldn’t see but her brain could no longer understand what her eyes were seeing.

Left to right - David Clarke, Helena Clarke a Rare Dementia Support patient, designer Charlie Hawkes, Stephen Graham OBE and Nikki Zimmermann from Rare Dementia Support (Image: Ginger Horticulture)

Helena and David are now Rare Dementia Support members and regularly go to meetings. “Our lives were turned upside down by the diagnosis. RDS were really helpful and helped us to get into a more positive frame of mind,” she said.

The National Brain Appeal’s “Rare Space” Sanctuary Garden will be enjoyed by Helena and others living with rare forms of dementia when it is permanently relocated to its final home, the world’s first rare dementia support centre in London that the charity is fundraising for. As an interim location, the garden will be moved after the Chelsea Flower show to Exbury Gardens in Hampshire for the public to enjoy.