The to challenge
All for a good cause
We will be raising money for the Myrtle Ellis Fund under the auspices of the National Hospital Development Foundation, and in particular for the development of support groups for individuals with rare and atypical young onset dementias.
Many individuals with unusual or young onset dementia find that existing health, social and voluntary services do not cater adequately for their individual needs. The availability of information about these conditions is poor, and established peer support groups are often not particularly relevant owing to significant differences in the age, life situations and symptoms experienced. The impact of a diagnosis of dementia on an 80 year old grandfather and 45 year mother with young children at home is very different. Although there are over 16,000 people under the age of 65 with dementia in the , there are neither the number of patients nor trained specialists in most local authorities to make specialist support groups viable. This is why we need nationwide groups capable of establishing community among affected individuals.
Three years ago, we at the National Hospital set up the first support group for people with Posterior Cortical Atrophy (PCA), the visual form of Alzheimer’s disease brought to public attention by the author Terry Pratchett. The group provides information, support and specialist advice, but most importantly provides patients and carers with the opportunity to share experiences and friendship with other people who really know what it’s like. For more information, videos and photos relating to the PCA Support Group, please visit http://pcasupport.codev.co.uk/. We also wish to establish similar support groups for other groups with young onset dementia, such as families affected by Familial Alzheimer’s Disease, the rare, directly-inheritable form of Alzheimer’s disease which affects relatives often in their 30s and 40s.
Thank you for visiting this site. We would welcome gratefully any support that you can offer.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - we raise more, whilst saving time and cutting costs for the charity. However, if you would prefer to contact us directly, please do so by email (sebcrutch@hotmail.com; tobyashken@gmail.com), post (Sebastian Crutch, Dementia Research Centre, Box 16, National Hospital, Queen Square, London, WC1N 3BG), or phone (0207 837 3611 extension 3113).
