Local people with rare forms of dementia to benefit from award-winning show garden now open to visitors at Exbury Gardens in Hampshire

•    Free access for local Rare Dementia Support members, funds being raised on the garden for The National Brain Appeal, who fund the service

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 (pictured below) 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.

Designer Charlie Hawkes on the Rare Space Garden at Exbury Gardens – photo credit Cathryn Baldock

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, 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 DementiaSupport 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.

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


For further information or images, contact PR Emma Mason on 07762 117433 emma@emmamasonpr.co.uk or Veronica Chrisp on 023 8024 5754 veronica.chrisp@exbury.co.uk

The National Brain Appeal – PR Manager, Marie Mangan – 07812 124092 marie.mangan@nhs.net

Notes for editors

  • Exbury Gardens, spread over 200 acres, is a calm and beautiful oasis with tranquil ponds surrounded by rare plants, trees and shrubs. It was created by Lionel de Rothschild in 1919, a passionate collector of plants and a keen supporter and sponsor of the early 20th century plant hunters, and has grown to become a stunning garden paradise. It boasts over 20 miles of pathways and trails and is located in the New Forest about 15 minutes from the M27. Over recent years the Hampshire garden, famed for its spring colour, has been expanded for all-season interest with areas designed to show off summer and autumn blooms, as well as an extension of its 1 ½-mile Rhododendron Line steam railway. Exbury Gardens, located in the New Forest near Southampton, is open daily 10am – 5.30pm. Arrival time slots must be booked online in advance at www.exbury.co.uk
  • About The National Brain Appeal (registered charity number 290173) – Dedicated to improving the lives of people affected by neurological conditions, The National Brain Appeal funds pioneering research, innovative treatments and world-class facilities at The National Hospital for Neurology and Neurosurgery and the UCL Institute of Neurology in Queen Square, London. The hospital is the UK’s leading centre of excellence for treating diseases of the brain, spine and the nervous system − such as brain tumours, epilepsy, stroke, dementias, MS, Parkinson’s disease and motor neurone disease. nationalbrainappeal.org

The charity funds Rare Dementia Support (RDS), a service that provides information, advice and support to people and their families living with raredementias and is currently fundraising for the world’s first Rare Dementia Support Centre, part of the UCL Queen Square Institute of Neurology, to provide guidance, support and education, as well as being a space for research, artistic and cultural activities. raredementiasupport.org

  • Charlie Hawkes is an award-winning landscape designer based in the UK who won a gold medal at the 2022 Chelsea Flower Show for his Wilderness Foundation UK Garden, as well as a gold at the 2023 show. He has a master’s in landscape architecture from the Edinburgh College of Art. His experience includes working in Japan at Dan Pearson’s Tokachi Millennium Forest, an estate placement at the iconic Lutyens-build house, Great Dixter and a season working at luxury hotel, Gravetye Manor in West Sussex. As a result of his knowledge of design and gardening, he strives to create places that have an atmosphere that reflects the unique nature of each landscape.
  • Project Giving Back (PGB) is a unique grant-making charity that provides funding for gardens for good causes at the RHS Chelsea Flower Show. PGB was launched in May 2021 in response to the Covid-19 pandemic and its devastating effect on UK charitable fundraising. PGB has funded a total of 15 gardens at RHS Chelsea Flower Show in 2023 and intends to fund up to 42 gardens at the show from 2022 – 2024. It was established with funding from two private individuals who are RHS Life Members and keen gardeners. They wish to remain anonymous. PGB will help UK-based good causes recover from the unprecedented effects of the global pandemic by giving them an opportunity to raise awareness of their work for people, plants and the planet at the high-profile RHS Chelsea Flower Show. www.givingback.org.uk