Coronation Street’s latest story line has sparked important discussions about young/early-onset dementia.
In recent episodes of the popular British TV soap, Debbie Webster, portrayed by Sue Devaney, visits a private doctor to address her growing memory problems, which ultimately leads to her diagnosis of early-onset dementia.
Dementia is often thought to primarily affect older individuals, but according to Dementia UK, more than 70,800 people are estimated to be living with young-onset dementia in the UK.
Corrie’s new plot line highlights the profound impact it has not only on the diagnosed individual, but also on their loved ones.
We spoke with Will Dean, now 25, who understands the effects of this firsthand. His mother, Ronnie, was diagnosed with early-onset dementia at just 49, when he was only 16. He has opened up about his own experience of this and why he is happy that shows like Coronation Street are shedding a light on this important topic.
What was your mum’s reaction to the diagnosis?
Will describes his mum Ronnie as a “work hard and mum hard” type of person, who was a driven senior police officer in North Wales Police that thrived in leadership roles, who also made sure she found time for her kids. However, when she first started experiencing cognitive issues, she kept it a secret from the whole family.
“She kept it a secret and went to the GP in 2015, three different times, and each time they said it’s depression or the menopause – but she’d been depressed before so she knew this was different,” says Will. “After lots of persistence, she was finally diagnosed with Alzheimer’s, initially through a phone call.
“She said that she remembers spinning around on her office chair, thinking ‘this isn’t real’ and was in disbelief. Mum didn’t want anyone to know for the first three years, because she saw the stigma in society. So there was a long time where it was only known in the very close family.”
Paul Edwards, chief nursing officer at Dementia UK, stresses the importance of getting an early diagnosis.
“A timely diagnosis can help the person and their family understand what form of dementia they have, how their symptoms affect them, and what they can do to manage them,” explains Edwards. “It also enables the person and their family to seek out information and support such as guidance around finances and future planning. ”
Do you think there are any misconceptions about dementia?
“If you asked a young person to describe what dementia looks like, generally, it will be an older person in a vinyl chair at a care home, not a mum who’s 49 and is at the peak of her career and life,” recognises Will.
He also highlighted that most people think Alzheimer’s is the only type of dementia, although that is not the case.
“Everyone knows the word Alzheimer’s, but that’s just one type of dementia – there are more than 300 different types,” explains Will. “I think in the show [Coronation Street] it’s going to be vascular dementia, which is the second most common type of dementia in the UK, behind Alzheimer’s. So it’s refreshing that they’re actually shining a light on a rare form which is characterised differently.”
How does it impact her everyday life?
Symptoms of dementia differ from person to person, depending on the type of dementia and which parts of the brain it affects, explains Edwards.
“I think mum’s the first to say that the dementia is a part of her, but it’s not her identity,” says Will. “Mum’s still verbal and says that she gets to be a different person at different times.
“For example, her taste might change week by week. So, my dad will bulk buy certain things and she suddenly won’t like it, because the brain changes the way we taste.”
Ronnie also sometimes confuses Will with other relatives, but he has learnt a few things that have helped him understand her brain a bit more.
“She might not remember the memory, but she will remember how it feels,” explains Will. “So one thing I’ve tried to do is to consciously do things with mum that are emotive, or attach a song to it, or attach a smell. All these things can help you shortcut to an emotional state.”
Have your coping mechanisms changed overtime?
Around the time of his mum’s diagnosis, Will got into running as a way of managing his mental health; he’d take on various running challenges around the country to raise money for dementia charities.
“There is no one-size fits all way of coping, but for me, especially at the start, I felt anger, and I buried myself in running challenges for charity,” says Will. “Being out for hours in the dark in the middle of nowhere was where I’d actually give myself the time to think about what it means, and how I felt about it.
“And that has evolved into now learning about what’s going on and trying to communicate with the other young people who are going through the same thing.”
What advice would you give other families who have just received a dementia diagnosis?
“The first thing most of us want to understand is what does this mean for us? And the sad truth is, there isn’t really a one-stop-shop for that – but this is where the helpline comes in,” says Will. “Whether you’re a family member or the person diagnosed, you can call the Dementia UK help lines, free of charge.
“There are specialist dementia nurses there, called Admiral Nurses, who have experience with all different kinds of dementia and patients of all different ages.”
You can contact the Admiral Nurse Dementia Helpline on 0800 888 6678 or email [email protected]
