Member showcase: Dementia Forward’s Young Onset Dementia Awareness Day

Services for people affected by young onset dementia

Ten years ago, the North Yorkshire charity Dementia Forward began running an outward-bound service for younger people with dementia in the Harrogate area, immediately seeing the difference it made. People became less isolated, were physically active and spent time with peers – and carers had respite time while the person they cared for was doing something they enjoy. It immediately became a life-line to many. 

Since then, the charity has built on this offer. They have a specialist young onset lead, two further outward bound-day services, social gatherings for people across the county, provide young onset education and have plans for so much more. Their support runs from pre-diagnosis to end of life and is tailored to the individual. They now want to spread the word, sharing their model so that other areas can benefit from this approach. As Jill Quinn MBE, Founder and CEO of Dementia Forward says, “There are pockets of good practice and there are other organisations working towards the same goals but we need to join the dots so we can all work together.”

The plan for sharing this model started to take shape when Jill met Peter Deaman, whose friend Jonathan had recently returned to Yorkshire and received a young onset dementia diagnosis. Peter, a marketer, was keen to do something to support his friend – and Jonathan, a musician and retired music industry executive, wanted to provide hope for others by talking openly about his diagnosis. The music inspired the U&ME – ‘Create a Voice’ campaign.

The campaign with its pioneering 10-year plan has two key objectives:

  1. To raise awareness of young onset dementia, and keep people doing what they love for as long as possible
  2. Deliver a specialist, age-appropriate care and support model. A model Dementia Forward hope will be replicated by other charities and service providers nationally

Endorsed by Care England’s Chief Executive, Professor Martin Green OBE, the campaign kicked off with Dementia Forward hosting 100 delegates at the inaugural U&ME Conference at Bowcliffe Hall near Wetherby in May 2023. Professor Green delivered the keynote speech, presenting Dementia Forward’s model as a game-changing template for the way they care and support people living with young onset dementia.

Their follow-up events and future conferences will continue to focus on what needs to be done to ensure that everyone across the country living with young onset dementia can access appropriate support, advice and care.

Raise awareness of dementia on YODA day

As part of the campaign, Dementia Forward has established Young Onset Dementia Awareness Day (#YODA), which will take place annually on 24th October – Jonathan’s birthday. The day will highlight that young onset dementia needs to be recognised in its own right.

This YODA day, Dementia Forward will be launching a powerful U&ME single. The message is that with the right support, people can continue to do the things that make them tick for longer. The track, recorded at Mark Knopfler’s British Grove Studios, is inspired by Jonathan’s words and features him playing guitar. Dementia Forward want as many people as possible to listen, download and share the track as possible. You can listen to the U&ME single on the usual streaming platforms from the 24th October 2023. Find out more about the campaign at youngonsetdementia.org.uk

For support across North Yorkshire and York, please call the Dementia Forward Helpline on 03300 578592 or visit dementiaforward.org.uk.