Rare dementia garden relocates to Exbury

24th Jun 2023

A triple award-winning show garden, which will benefit local people diagnosed with rare dementias and their families, has been officially opened at Exbury Gardens.


The National Brain Appeal’s  beautiful ‘Rare Space’ garden, designed by Charlie Hawkes and now sited opposite the Five Arrows Gallery at the famous New Forest visitor attraction, was opened by Helena Clarke who lives with the condition posterior cortical atrophy (PCA). Also at the launch was Peter Jones from Fareham who has been diagnosed too with PCA. This affects the area of the brain that deals with visual processing.


Local families who are members of Rare Dementia Support are being given free access to the garden at Exbury. A digital donation point at the garden allows money to be raised for The National Brain Appeal, which funds the service; and information boards and leaflets give more details about rare dementias and advice on how to seek support. Staff at Exbury Gardens have also undertaken dementia awareness training.


The Project Giving Back-funded Rare Space Garden won three awards at RHS Chelsea Flower Show last month, including a gold, and is designed for those living with rare dementias, particularly visual and spacial forms of the disease. It will eventually be located at the world’s first Rare Dementia Support Centre in London but, whilst The National Brain Appeal raises the estimated £7m needed to create this Centre - expected to open in 2024/25 - the garden has been temporarily located in Hampshire for Exbury’s visitors to enjoy, and to raise awareness of these life-changing neurological conditions, which are often misdiagnosed. 


RDS supports people living with seven forms of rare dementia; these can strike at a young age, may be directly inherited, and often affect skills other than memory, such as vision, language, behaviour and movement. It is thought that around 47,000-142,000 people in the UK are living with a less common form of dementia but reliable statistics are hard to find due to frequent misdiagnoses. 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.  

Following diagnosis, many find that existing health, social and voluntary services do not cater adequately for their individual needs, and established dementia support groups are not particularly relevant to their situation. Members of these groups can often be significantly different to them in terms of age, life situation and symptoms. 30% of people living with a rare dementia initially receive an incorrect diagnosis and there is a widespread lack of understanding and a shortage of dedicated resources to support those affected.

Theresa Dauncey, chief executive of The National Brain Appeal, 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.”


Exbury Gardens’ chairman Marcus Agius 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 created with the input and collaboration of those affected by visual-led dementias, and 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.

Below: Helena Clarke officially opens the Rare Space Garden with husband David (centre front). Back from left to right – Hattie Ghaui (Project Giving Back), Professor Nick Fox (Rare Dementia Support), Theresa Dauncey (The National Brain Appeal), Charlie Hawkes (designer) and Marcus Agius (Exbury Gardens).

Photo credit: Britt Willoughby Dyer 

Rare dementia garden