'Services don't account for needs of people with young onset dementia' - How conference hopes to be starting point for change

Jill Quinn has no hesitation in describing the society she’d like to live in, ten years down the line.“There will be improved knowledge and understanding of young onset dementia, people will be getting their diagnosis quicker and they will have wrap-around support that is appropriate for their age,” says the CEO of North Yorkshire-based charity Dementia Forward.

Jill, who this year was made MBE for her services to dementia, will use the organisation’s first ever young onset dementia conference next week to formally launch a decade-long vision to raise awareness of the condition, tackle stigma and develop the provision of specialist services and support.

She hopes the conference, at Bowcliffe Hall on Monday, will be “the beginning of conversations” around young onset dementia and will encourage people to think about separate care paths for people who develop dementia before the age of 65, and those who are older.

Hide Ad
Hide Ad

“It’s not a one-size-fits-all approach,” says Jill – and particularly so when younger people may still be in employment, with mortgages to pay and young families to look after.

Jill Quinn, CEO of Dementia Forward.Jill Quinn, CEO of Dementia Forward.
Jill Quinn, CEO of Dementia Forward.

At the U&ME Conference, Jill will set out the work Dementia Forward has been doing, as well as its ten-year vision and its aim to pull together more accurate data on how many people are affected by young onset dementia.

The conference will also feature speakers including Care England’s CEO, Professor Martin Green. “Dementia is usually seen as a condition that affects older people, but some of those living with dementia are younger, and yet services do not take account of their specific needs,” Professor Green says.

"And there is a degree of stigma and little understanding within the wider society of the impact of this condition on people’s lives. The U&ME campaign is designed to create a voice for those with young onset dementia and increase understanding of the condition by Governments, service providers, and the wider society. This increased understanding will lead to improved services and better outcomes for people and their families.”

Hide Ad
Hide Ad

Monday’s conference will follow a family fun day, being held on Sunday as part of the campaign. The party at Bowcliffe Hall will include a barbecue and live music, including from Jonathan Beardsworth, the inspiration behind the campaign, and his recently re-grouped band. Otley-born Jonathan, a guitarist and former music industry executive, was diagnosed with young onset dementia in his early 60s.

Jill is also set to talk about Dementia Forward's work with a care home near York on a purpose-built young onset dementia respite and care facility, as well as setting out the charity’s ultimate aim to create a respite space in a care village near Pocklington.

For more on the charity, visit /www.dementiaforward.org.uk