Early onset dementia – one couple’s search for answers

February 10, 2017

Colin Ward was a healthy 52-year-old when he proposed to his partner Jane. Less than 18 months after their wedding, the couple’s lives were turned upside down when Colin was given the diagnosis of vascular dementia – at just 56 years old.

Colin’s health started deteriorating almost immediately after their wedding. In 11 months, his condition had declined to such an extent that Colin lost his job as a taxi driver and was unable to walk unaided. Colin now lives with wife Jane (50) at home in Hailsham with occasional respite stays at Clifden House, a specialist dementia care home.

“So many things went wrong for me within a very short space of time,” said Colin. “Jane and I thought we’d found a bit of happiness, but it feels like that’s all been taken away. I don’t even remember much about our wedding day.”

Warning signs
It all began when Colin started to get pains in his legs and arms. He went to the GP and was initially diagnosed with polymyalgia and given steroids.

He was still working long days as a taxi driver, and spending all weekend recovering from work. Then in May 2016 he had a fall that he doesn’t remember. He fell out of a car and banged his head. He managed to make his way to Lewes and someone took him to the hospital.

“When I got to the hospital a doctor asked me if Colin was usually slow in responding and I said no,” said Jane. “I knew then that something more serious was afoot.”

He had a few more falls, some of which he didn’t tell Jane about. “I knew I wasn’t very well,” said Colin. “I was struggling more and more, physically, but you just think, I have to keep going, that’s what my mum and dad would have done.”

“Colin was always a calm, placid man,” said Jane, “but his moods became very changeable. He became a different person. Depression kicked in – he got lower and lower but there seemed to be no explanation for it.”

Search for the truth
Colin had a range of different tests, some of which he never got the results for, and in the end they were advised to have a private neurology assessment.

In January this year Colin and Jane received an official diagnosis of vascular dementia following a psychiatric assessment. The couple is now hoping they might be able to access some help.

Jane is having counseling through Care for Carers and Colin is eager to access physiotherapy to help him to walk again.

“There are so many people you don’t want to hurt but they’re the people you’re going to hurt because they’re closest to you,” said Colin.

Moving forward
“As I see it there are two ways of dealing with this now,” he said. “One is to sit and wait for another attack and the other is to try and get back out in the real world.”

“I went to see Colin recently at Clifden House in respite and we had a really nice time,” said Jane. “It’s like he was back to normal. He even rang me the day after to thank me for coming. He was really sweet. Clifden House’s way of dealing with the person with dementia and the family is incredible. Colin has said that if he ever goes into full time care, that’s where he’d like to go.”

Nial Joyce of Clifden House said: “Colin’s story highlights that dementia has many different faces, and the more we raise awareness and understanding about the disease, the faster people like Colin can access help and end the confusion of not knowing. We are glad that we can support Colin and his wife during this difficult time.”

Speaking out
Things that frustrate me must frustrate hundreds of people,” said Colin. “Throughout all this I feel I’ve not had a voice. Everyone deserves a little bit of dignity.”

Jane and Colin want to share their story to help others and highlight that ‘getting a diagnosis’, although not welcome, can be helpful as it means you have some idea of what you’re dealing with, allowing you to plan for the future and put support systems in place.