When June Rance, now 72, was diagnosed at the age of 41 she was one of the youngest dementia patients her doctors had ever seen.
Over the past 30 years, her main carer has been her devoted husband of 54 years, Len, 71.
But now the couple, of Tingley, have been given the devastating news that he too has dementia. The grandfather-of-five told the YEP: “I just couldn’t believe it. I feel down at times. I become myself again but it’s a worry. Apparently mine could be worse than June’s. I don’t want to become violent.”
“I wouldn’t wish this on anybody,” he added.
June and Len are among the 5,800 people in Leeds with a dementia diagnosis - but medical experts estimate there are a further 3,000 yet to be diagnosed.
Due to the growing ageing population, that number is set to rise, with 10,000 expected to be diagnosed by 2025 and with health experts estimating one in four of us will develop dementia in our lifetime, the issue has become an urgent topic to be tackled in the city.
It will be the subject at the next Voice of Leeds Summit - a series of debates tackling some of the big challenges facing Leeds, organised in partnership with the Leeds Community Foundation. Key figureheads from the public, private and third sectors will gather tomorrow at the YEP’s office to discuss how the city can become more dementia-friendly.
Len said he’d feared the worst when he started noticing signs. He said: “I kept on forgetting things. I thought it was just my age but with June being like she is, I thought is it dementia?”
Tests showed he had vascular dementia - resulting from a series of small strokes which have destroyed parts of his brain.
June has been on medication since her diagnosis but says she feels she has deteriorated recently. She said: “I can be having a conversation with someone then realise there’s something wrong - I’ve a lot of trouble getting words out and saying what I mean. Recently I’ve been struggling with all sorts - not knowing where I’m going or what I’m doing. When I’m writing things down, it’s sometimes a lot of rubbish. I’ve left taps on.
“I try to talk to people as much as I can but I’m finding I can’t do that now. I daren’t go out on my own now. It’s really frightening because you don’t know what to do [when you get lost]. Especially on the bus - you should know what bus you got on and where to get off at but everything just goes. It’s not nice. I can’t trust myself because I don’t know what I’m doing. It’s degrading.”
Tim Sanders, commissioning manager for dementia services in Leeds, said the city has made great strides in recent years - but still has more to do.
“Four years ago we had just over 4,000 people diagnosed. In April 2015 we had 5,800. So we are definitely getting much better at identifying signs of dementia and helping people be diagnosed. That’s important because if we don’t know about it, it’s difficult to help people.
“There’s lots going on but still a lot of work to do.”
Community campaigner Peter Smith has seen first hand the power of support in the community can have on people with the condition. He set up Tea Cosy Cafe in Rothwell for those with dementia to meet and mingle. Its attendance has grown from just 11 people in 2011 to currently over 130 people every month.
“We find a lot of people have responded to it because it’s somewhere else for them to go, among like-minded people. They have been withdrawn and isolated for maybe months or even years, some people.”
He added: “I’m 68, I won’t say I’m not worried - most people are worried about it - but we need to remember that dementia isn’t the be all and end all. People can still continue with normal, everyday life but they need people around them to help and support with that.”
Len and June Rance said they have been supported by the various social events around Leeds - such as Peter’s Tea Cosy Cafe in Rothwell and Leeds City Council’s Peer Support Service.
Len said: “It does help. It’s brilliant. You don’t want to be sat in your house just wasting your life away.
“You want to get on with your life as much as you can, as best as you can. It’s a life-saver really.”
Pip Goff, programmes manager at Leeds Community Foundation will be chairing tomorrow’s summit.
She said: “With awareness of memory issues increasing, it is crucial that people with dementia and other memory concerns and their families are aware of the great services available to them. We hope that this Summit will not only act as a platform to help the city work together to raise awareness of and crucially highlight practical ways in which people can help to address this issue.”
**Do you have a question for the summit? Email firstname.lastname@example.org