YoungDementia UK began in 1998 as The Clive Project following a couple of years of research and fundraising. The work was inspired by the unmet needs of Oxfordshire resident, Clive Beaumont, who was diagnosed with young onset dementia in his forties. At the time, there was very little support that was right for him, his wife and his young children.
Clive died in 1999. He was 51. You can read Clive and Helen's story here.
How we started
A small but very determined group of people persuaded the local Alzheimer’s Society to commission a development worker to research into the local needs and wishes of people with young onset dementia and their families.
This results formed the basis for the first service, and the core needs have shaped service development ever since. Individual support for the person with dementia was identified as the priority for The Clive Project, as we called ourselves in tribute to Clive Beaumont, and the One to One Service was launched in 1998.
In 2000, we won the Department of Health Social Care Award for promoting independence for younger people with dementia.
Initially we were under the umbrella of a local dementia charity, Inter-Agency Day Care Group Oxford. In 2001 we established as a charitable company, rebranding ourselves in 2010 as YoungDementia UK.
Delivering the ‘list’
‘No man is an island’. It was never going to be enough to support the person with dementia alone. Our Club, offering up plenty of social events throughout the year, addressed the need to connect with others in similar circumstances but mostly the need for social contact and to belong. In 2008, we added the monthly evening Café which has become increasingly popular as a lively place for music, dancing and companionship which became a mainstay both for people with dementia and their wider families.
Our support for families began with the development of the first information resource of young onset dementia, our own charity website and setting up the Exchange, a programme of activities which provided mutual support and sharing of information and advice, both of these innovations are now accepted as essential dementia services.
Extending our services to the wider family
In 2005 we launched our Family Service to run in parallel with the ever-growing One to One Service. And since 2013, the support provided has also been clinic-based so that we connect at the point of diagnosis, and extends where possible, regionally.
On the list then as now is an alternative supported home when the person's own home is no longer an option. This has been quite a challenge over the years but is being worked on with determination by YoungDementia UK Homes, our sister charity.
In 2009, we won a GlaxoSmithKline IMPACT Award recognising outstanding work and an excellent contribution to community healthcare. It was given to us as The Clive Project, the original name of YoungDementia UK and we were a shortlisted finalist for Oxfordshire Charity of the Year 2011 in the awards offered by Oxfordshire Community and Voluntary Action.
Onwards and upwards
YoungDementia UK support services were one of ten projects to be given the EFID Award 2012 ‘Living well with dementia in the Community’. The European Foundations’ Initiative on Dementia aims to improve perceptions of dementia, particularly locally, to achieve a better quality of life for people with dementia and their families.
Since 2012 we have put in place an increasing range of opportunities for people with dementia and their families to meet up, separately and together, for mutual support, socialising and shaping what they need and want from others. And are linking these groups with others beyond Oxfordshire.
In 2013-2014 we identified areas to begin our national development, namely the relaunch of our website, setting up a national conference and a steering group for the first National Young Onset Dementia Network.
In November 2015 we began working with Age UK Oxfordshire and Guideposts to deliver a new, all ages Dementia Support Service across Oxfordshire. For more information, visit Dementia Oxfordshire.
Looking to the future, we want our work to improve life for many more people, wherever they live in the UK - the launch of the Young Dementia Network in late 2016 and our increased social media activity reflects that wish. This was followed in 2017 with the launch of a guide for GPs to help them to recognise signs and symptoms of young onset and a leaflet for memory cliinics to be given to people who are newly diagnosed tto make them aware of national sources of support.
In 2018, we celebrated our 20 year anniversary. You can download a timeline showing the achievements and growth of YoungDementia UK over the last 20 years here.