YoungDementia UK recently hosted the inaugural meeting of a new national young onset dementia network which aims to tackle issues affecting the lives of people affected by young onset dementia.
Attendees included people living with young onset, family members and individuals with clinical and professional experience of young onset dementia from across the UK.
The purpose of the network is to harness the group’s experience, knowledge and combined passion to bring about action and change as identified by those who live with young onset dementia.
Tessa Gutteridge, director of YoungDementia UK said,
'The group is about creating a national identity for young onset dementia. There is nothing at the moment. It is important we listen and act. This is two- way process for people living with this condition to feed in and for us all to unite to bring about change. Sadly, the obstacles in the way of making the most of life with young onset dementia now are the same as those identified 20 years ago. It is high time for action. This is just the beginning.'
It can take years for people aged under 65 to get a dementia diagnosis. Post-diagnostic support is often poor and most of the services that do exist are aimed at older people. The network’s priorities are to ease the route to a timely diagnosis and ensure age appropriate support is available to all.
The inaugural national young onset dementia network steering group meeting was attended by
- Sandy Williams who was diagnosed with young onset dementia two years ago;
- Richard Williams, Sandy’s husband;
- Keith Oliver, diagnosed with dementia four years ago;
- Rosemary Oliver, Keith’s wife;
- Tim Beanland, Knowledge Manager for the Alzheimer’s Society;
- Jenny La Fontaine, Young Onset Dementia Development Officer at Worcestershire Health and Care NHS Trust;
- Tessa Gutteridge, director of YoungDementia UK;
- Dr Reinhard Guss, clinical psychologist and dementia lead for the British Psychological Society;
- Mark Ivory, incoming editor of the Journal of Dementia Care;
- Richard Kelly, Policy Manager for Dementia, Public Health England;
- Dan Lawrence – Chief executive of Peaceful Place charity;
- Rachel Litherland – Director of Innovations in Dementia;
- Prof Jan Oyebode, clinical psychologist, academic and researcher, Bradford Research Group;
- Dr Karim Saad, a consultant psychiatrist and lead YOD clinician, Coventry;
- Jill Walton, a nurse advisor/co-ordinator for rare dementia support groups, UCL.
If you would like more information about the national young onset dementia network steering group, please email us.