Worthing woman with rare dementia opens award-winning garden for a second time at its new temporary home in Exbury Gardens

The triple award-winning show garden will benefit people who are diagnosed with rare dementias and their families and it is now open to them to visit for free.

Helena Clarke, who has posterior cortical atrophy (PCA), affecting her vision and spatial awareness, helped to open the National Brain Appeal’s Rare Space Garden at Chelsea Flower Show in May, having been invited to travel up from Worthing with her husband, David.

Helena then officially opened the garden again at its new temporary home in Hampshire to help raise awareness of the seven forms of rare dementia, life-changing neurological conditions which are often misdiagnosed. It is sited opposite the Five Arrows Gallery at Exbury Gardens.

The garden, designed by Charlie Hawkes and funded by Project Giving Back, won three awards at RHS Chelsea Flower Show, including a gold. It was created for those living with rare dementias, particularly visual and spacial forms of the disease, like Helena.

She said: “I love the garden. I can quickly make sense of where things are and the paths are easy to follow towards the brightly coloured benches. I feel very privileged to be involved with this project.”

Rare Dementia Support members are being given free access to the garden. Information boards and leaflets give more details about rare dementias and advice on how to seek support, and a digital donation point allows money to be raised for The National Brain Appeal.

Theresa Dauncey, appeal chief executive, said: "It is wonderful to see The National Brain Appeal's Rare Space Garden in its new home at Exbury Gardens and looking as splendid as it did at RHS Chelsea Flower Show.

"We are incredibly grateful to Marcus Agius and everyone at Exbury Gardens for hosting our garden, giving so many more people the opportunity to see it and to learn more about rare dementias, and, of course, to Project Giving Back for making all of this possible.”

The garden will eventually be moved to the world’s first Rare Dementia Support Centre in London. The National Brain Appeal is busy raising the estimated £7million needed to create this centre and it is expected to open in 2024/25.

The condition can strike at a young age and it is thought around 47,000 to 142,000 people in the UK are living with a less common form of dementia. The new centre will be a state-of-the-art home for the service, bringing people affected by these conditions together with experienced healthcare professionals.

Marcus Agius, Exbury Gardens’ chairman, said: “One of the purposes of the Rare Dementia Support Centre will be to educate people about these unusual conditions, not just sufferers and their families and carers, but also members of the medical profession. As such, the Rare Space Garden fits well with the educational objects of the Exbury Gardens charitable trust. We are simply delighted to be hosting it until the new centre is built.”

The Rare Space Garden was designed as a space to foster autonomy and hope. It offers a balance between exploration and calm navigation. Subtly coloured planting has been chosen to minimise sensory disruption. A level, wide path weaves simply through the garden, offering brightly coloured, easily found seating areas and sheltered spaces along the way, for independent wayfinding. Interpretation boards outline the significance of key features within the space and explain how those with rare dementias and their families can seek support.