'It's almost impossible to get overnight care' - Leeds family on struggles with early-onset dementia support

For nearly three years, he has been attending the The Young Dementia Leeds Hub, a daytime respite facility with a programme of activities for younger people living with the condition.

But whilst his four days a week there enables Janine to work as a medical secretary, what she says her family really needs is an overnight accommodation offering for Bob.

When she recently wanted to visit family away from home, it took Janine months of work to find a care home that would take Bob for the night.

"My son Jack and I share all the caring between us, which is completely draining,” she says.

“Many care homes refuse people with early-onset dementia because they are too young. It’s almost impossible to get overnight care unless it’s a real emergency.

“Even care homes that accept younger clients prefer you to book for two weeks at a time, but we would like to be able to access overnight stays for shorter periods.

“Just a weekend would be good sometimes, so we can get away or even just go out for a night.”

Community Links, a Leeds-based charity that runs dementia care services across the city, including the hub that Bob attends, is a partner in a new study looking at the needs of people living with early-onset dementia – generally aged 65 or younger.

A collaborative research project with Leeds Beckett University, and part-funded and commissioned by Leeds City Council, it aims to establish what is working well and what could be improved, and is designed to help inform the commissioning of future services in Leeds.

Sinead Cregan, the director of development and innovation at Inspire North, the parent company of Community Links, explains: “The care needs and respite requirements for people living with early onset dementia are often very different.

"These people are generally younger, fitter, and have different interests and expectations than older people. They can also have financial and relationship challenges to deal with.

“Working together with Leeds City Council, the aim of the [study] is to help ensure unmet respite needs for people with young dementia are identified and are addressed in future spending.

“This project will play a significant role in shaping future support for people in Leeds, and their families, living and coping with early-onset dementia.”

Claire Surr, professor of dementia studies at Leeds Beckett University School of Health, adds: “We hope as many people as possible in Leeds who have received a diagnosis of early-onset dementia - or who support someone with the condition - will complete our survey when it is launched in November so that we can get the views and experiences of a wide range of people.”