Triple award-winning garden, designed to benefit those living with rare dementias, opens in Hampshire

The National Brain Appeal’s beautiful ‘Rare Space’ Garden, designed by Charlie Hawkes and now sited at Exbury Gardens in the New Forest, was opened with support from former painter and decorator Peter.

Peter lives with the condition posterior cortical atrophy (PCA), which 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, while a digital donation point at the garden allows money to be raised for The National Brain Appeal (NBA), which funds the service. 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 NBA raises the estimated £7m needed to create the Centre - expected to open in 2024/25 - the garden has been temporarily located in Hampshire.

Peter, 67, was diagnosed last October with PCA, a rare form of dementia that can initially cause difficulties with vision. He and his wife Mandy had known something was wrong for about four years prior.

Peter said: ‘I remember playing with my grandson, who was two at the time. He had this puzzle with six large pieces with patterns on them and I just could not work it out.’

Mandy added: ‘I could see that he started to struggle with spacial perception and anything that involved putting two things together, such as keys in locks and simple things like buttering bread or writing were becoming difficult.’

Peter stopped working because he realised he could no longer match the patterns when hanging wallpaper and struggled with cutting in around corners and cupboards.

They sought help from Rare Dementia Support, a service funded by the NBA, who provide specialist one-to-one support and opportunities to meet other people living with similar conditions through their nationwide network of support groups.

Peter joins a monthly online session where he chats to other people who also have PCA.

It is thought 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.

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.

Subtly coloured planting has been chosen to minimise sensory disruption. There are brightly coloured, easily found seating areas and sheltered spaces along the way and interpretation boards.

Exbury Gardens, spread over 200 acres, was created by Lionel de Rothschild in 1919. Located about 15 minutes off the M27, it boasts over 20 miles of pathways and trails.