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Early onset dementia service on BBC Radio Leeds

Young Dementia Leeds (YDL) has featured in a story on BBC Radio Leeds about early onset dementia and the lack of respite care currently available for people. 

On Wednesday 29 November, Chris Naylor, whose wife Tracey uses YDL Hub, spoke to Rima Ahmed on the Breakfast Show alongside Sinéad Cregan, Director of Development and Innovation at Inspire North, the parent company of Community Links which runs the YDL service.

Speaking on the programme, Chris described life with his wife and how they have coped with her condition, and he spoke highly of the support on offer at YDL. “The Hub is a wonderful place,” he said. “It’s a place where Tracey can interact with people. If it weren’t for the Hub, I don’t know what we’d do.”

Sinéad Cregan spoke about the study into the issues around early onset dementia respite provision, which is currently being developed by Leeds Beckett University and which is part funded by YDL and Leeds City Council.

“What we’d like to understand (with the study) is what it is people would like to see happen and how do we work together to find some sort of a solution to that,” said Sinéad, highlighting the close links YDL has with Leeds City Council and Adult Social Care. “There’s definitely a growing need. This is a whole system problem and needs a whole system solution. What’s important is, we need to get the offer right.”

You can hear the full interview on BBC Sounds on the Rima Ahmed programme.

Chris and Tracey’s story

Tracey, now 58, worked for the NHS for over 20 years. She began making mistakes at work and eventually lost her job. In her mid-forties at the time, Tracey fell into a period of depression and started hiding her symptoms. “I knew something was wrong, but I didn’t know what to do about it,” says Chris, 70, her husband and now carer.

In 2011, after a period of decline, she was diagnosed with frontotemporal dementia – a degenerative disease.

“In Tracey’s case it runs in the family,” says Chris. “Her younger brother has recently been diagnosed with Alzheimer’s.”

Tracey now attends Young Dementia Leeds Hub three days a week and this helps both her and Chris.

“People at the Hub – they have been exemplary – they have tried to help me and Tracey as much as they can. And have done. They’ve supported me, even if I needed a moan about things. The Hub have helped steer me and kept me together at times. They can’t do a better job there than they already do.”

But other support, says Chris, has been lacking and Tracey’s condition has had a profound effect on both of them.

“It’s knackered me really,” says Chris.  “I get short bursts of time to myself but I’m always clock watching. There’s not a lot I can do in the time I have away from Tracey. Dementia has taken over my life.”

Like for other people, accessing longer stay and overnight care for his wife has been really difficult for Chris.

“It took an awful lot of sorting out to get overnight respite care,” he says. “You have to go through various assessments and fill in forms that are horrendous and not at all clear.”

Although Tracey is entitled to six weeks respite care a year, the full costs of getting that care are not covered. “The full cost varies from place to place,” says Chris. “I have to make up the difference in cost whenever we do find somewhere for Tracey, and that can run into hundreds of pounds.”

And the overnight care is, says Chris “adequate” but not great. “I have to leave her in places that are, for want of a better word, old people’s homes. But Tracy is still young. She could do with more variety in the people around her and a better variety of things to do.”

“If we could get something like the Hub overnight that would be ideal, but there’s nothing like that out there at the moment. There are lots and lots of brand new old people’s homes opening up all the time, but the costs are phenomenal. We’re talking a thousand pounds a week. I don’t know people who can afford that kind of money and the costs alone put you off asking for help.”

Chris is keen to take part in the study into early onset respite care when a questionnaire related to it is rolled out early next year.

“If this study does some good to help other people,” says Chris, “that’s great.”

Photo: Chris and his wife Tracey at the Young Dementia Leeds Hub.