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Meet the Northern Ireland heroes making life easier for people with dementia

Across the UK there are 850,000 people living with dementia. Here, two NI people who won accolades in the Alzheimer's Society's Dementia Friendly Awards this week tell Leona O'Neill how the condition affects their lives and how they are making a difference

Enjoying life: Barney Thompson with wife Catherine
Enjoying life: Barney Thompson with wife Catherine

Barney Thompson (66), who lives in Toomebridge, won Trailblazer of the Year in this week's awards. He was diagnosed with Lewy body dementia when he was 64 years old. The former policeman, who is married to Catherine and has two daughters, Sophie and Aimee, says that dementia hasn't stopped him living life - just slowed him down.

"I was a traffic cop in England for 30 years," he says. "With that job I was on traffic duty in Liverpool and was also a family liaison officer. That meant that I was called out to all the serious and fatal accidents in our area.

"I was the contact between the bereaved people and the police. It was a tough job. I had to go to the scene of an accident and I had to look at everything, so when the family asked a question you could answer them truthfully. So I had loads of incidents to deal with, lots of dead and damaged people.

"I got depression and anxiety and I got pensioned off in 2002 and I joined the health service.

"My condition really came to light when I was working there. I was working on my computer and there used to be a way of shortcutting to a particular screen. I used this method every day, a sequence of buttons you press to get to a particular place. And one day I tried to do that several times and I couldn't remember. And I nearly broke the keyboard in pure frustration. I just couldn't remember and couldn't work it out.

"That was when the process of going to doctors and consultants started. I was diagnosed with mild cognitive impairment at 64."

Barney says he was shocked by his diagnosis and has struggled at times over the last few years with the impact of the condition. He says he remains positive and uses his experience to help others through the Alzheimer's Society.

"It was a shock to me, but it was nice to have a label to stick on it," he says. "But it really wasn't the label I was looking for. I had dementia with Lewy bodies.

"It has taken over my life, 24 hours a day. I could be talking to someone and halfway through a sentence I'll stop, because I've lost track of what I'm saying. It's like all dementias, it's an evil thing. It just takes over everything.

"I'm not too bad at times and then others I can't get even three words out. If I start to do something, I'll get halfway through it and not be able to remember what I was doing. It just consumes your life. I know it's never going to get any better, it's only going to get worse. Which is why I work with the Alzheimer's Society to help them help people like me.

"It is a hidden disability and indeed it can make you feel invisible. When I'm with my wife, people ask her questions about me. I sometimes feel like I'm nobody, like a non-person.

"Because it's a hidden disability I can walk and see no problem, but I have slight panic attacks if I get lost, which is a normal thing. People need to understand that not all disabilities are visible."

Barney says he would encourage the public to understand and 'give time' to those living with dementia. This week he won the Alzheimer's Society's Trailblazer of the Year award for the work he is doing to help organisations become more dementia friendly.

Receiving his Trailblazer of the Year award
Receiving his Trailblazer of the Year award

"I was absolutely overwhelmed about the award," he smiles. "I don't think that what I do is very important. I'm just me. That's just me. I'd like to be an inspiration to some people. Dementia is an illness or a disability, but it is not the end of the world. You can get through it.

"When I'm educating people on dementia the thing I say to them is that I want people to give time and be patient. Time is a good thing. I get halfway through a sentence and then I'll say I've lost track. It's embarrassing. I want people to be more understanding and aware that people have these conditions and be patient.

"I have done a lot of work with Junction One retail outlet. They have turned down the volume of the music in the shops and they have introduced quiet areas. I worked with Belfast City Airport to make changes and they have introduced a lanyard system.

"I have written to Prime Minister Boris Johnson in the hope we can make this universal.

"I've spoken with students at Queen's University, as part of dementia friendly community workshops, and I've been to car showrooms, shops and businesses and I've spoken at conferences."

Barney says that he doesn't let his condition hold him back and is even planning a skydive early next year to raise money for the Alzheimer's Society.

"I like to live life to the full," he says. "I have saved some baby sea turtles in Barbados. My wife and I were there on holiday and the newly born turtles were gravitating towards the street lights and we gathered them up in buckets and saved them.

"Next year I'm going to be jumping out of a perfectly safe plane to raise money for the Alzheimer's Society. When I was a police officer, I loved being on the bike and I loved speed. Since all that was taken away from me I've missed it.

"Jumping out of a plane is going to be great. I'm an adrenaline junkie.

"I hope that by me doing this it will help other people living with dementia that it doesn't stop you doing things. All it does is slow you down a bit."

‘We estimate it took at least 11 years to find out what was wrong with Jim — I don’t want anyone to have to take that journey again’

Emily and Jim

North Belfast woman Emily Wilson (64) won the Outstanding Contribution award at the Alzheimer Society’s Dementia Friendly Awards. Her husband of 45 years, Jim (72), was diagnosed with dementia five years ago. The mother of two daughters, Jenni (26) and Heather (28), gave up her job at Belfast City Council to look after her husband and now works as an information officer for the Alzheimer’s Society.

“Jim was diagnosed in April 2014,” she says. “He had been knocked down at Christmas 2010 as he was coming home from work and fractured his skull. When they scanned his brain they found that he had damage on both sides of his brain. One from the accident and the other from heading a heavy football excessively as a footballer when he was younger.

“Life went on, but then slowly but surely things changed. His personality seemed to change. He got very anxious and very depressed. He was always quite a shy and retiring man, but all of a sudden he became more outgoing and acted out of character. He did practical jokes. He just wasn’t Jim any longer.

“We went on holiday to Majorca in 2013. We loved walking while on holiday. Jim went out a walk one day from the hotel. He said he was just walking up the street and back. A few hours passed and I started to really panic. In the evening the Spanish police brought him back. He had gone into the station and they had taken him around all the hotels in the area. He couldn’t remember which one he was staying in. They had to call a travel agent and get the name of the hotel and bring him back.

Emily Wilson with Jm and their grandsons Joshua, Daniel and Christian

“Then I asked him to pick me up from work in Belfast city centre one night. I was standing outside City Hall and saw our car coming down one of streets heading for Millfield and I knew that he wasn’t going to find me so I went and got the bus home.

“Jim came in a few hours later and said that someone had stolen the car. He told me exactly where he had parked it and we went out in our other car to look. There was no broken glass or anything and there was no car. We went to the police and reported it stolen. Later that evening they called us back, they had found the car, perfectly parked and safe. He had just forgotten where he had parked it.”

Emily adds: “We went to see the doctor, who referred us to the hospital where the doctor sent Jim out of the room and told me he had dementia. It was a really big shock. I just said ‘no’ and cried. I knew nothing of dementia, but I knew it wasn’t good. We left that office with a piece of paper, a prescription and that was that.”

Emily says that when she reached out to the Alzheimer’s Society they were able to guide her through the dark days immediately after diagnosis. She left her job at the council to care for Jim and both their lives changed forever.

“The Alzhiemer’s Society really came to our rescue and walked us through everything,” she says. “They were amazing. Jim took early retirement from his car parts business. Then we hit crisis point about 18 months after diagnosis when Jim started to hallucinate.

“His first experiences of that were very nasty. He could hear and see a person demanding £13,000 from him. Jim would never owe anyone anything. Then he started to take a tremor in his arm.”

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Dementia Friendly Awards 2019 at The Europa Hotel - Outstanding Contribution 2019 Award - Sarah Travers with Emily Wilson and Bernadine McCrory; Director Alzheimer's Society. Picture: Elaine Hill Photography

Emily says that she cared for her husband at home until his condition deteriorated to a point where it was no longer safe for him to be at home, something she says left her ‘an emotional mess’.

“One day we found Jim on the floor of the bedroom,” she says. “We don’t know whether he was trying to get up to go to the bathroom or he fell out of bed. There does come a stage, which is very hard to admit as a carer, where they will be safer in a care home rather than you looking after them. You still have that guilt. He is unsteady on his feet and needs 24-hour care.”

Emily says that her experience has left her feeling that she wants to help guide other families through their journey with dementia.

“Six years ago had you mentioned the world dementia to me, I wouldn’t have known anything about it,” she says. “But I am very passionate about the Alzhiemer’s Society now. We estimated that it took at least 11 years to find out what was wrong with Jim. I don’t want anybody to have that journey again and not understand.

“I got an award recently from the Alzhiemer’s Society, which just blew me away. And the most moving part of it was when my friend told me to turn around when they had called my name and the whole place had stood up and gave me a standing ovation. I was moved to tears.

“For me it’s all about making communities aware and helping them understand dementia, that you can, until a certain stage, live very well with dementia. It’s the little things that mean so much. The patience, understanding and time people give to make life better for people with dementia.”

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