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Allan Burns remembers the last time he ever had a conversation with his dad, Gerald. It was June 2022. They were sitting in the sun, watching fish in the pond, just chewing the fat. By then, his father was fading, and the next time they sat down together he was gone.
All his life, Gerald (Gerry or Gez, depending on which part of the country he was in) had been as fit as a fiddle. He’d spent his career working as a long-distance lorry driver for the British Shoe Corporation.
“We were always telling him not to climb ladders, or not to trim the tops of the conifers in his garden, or to get off the roof and let us clean his guttering,” Allan laughs. “I’d look out of my window on a random day and find him jet-washing my path because he was bored. That’s the kind of person he was.”
Gerald turned 80 in September 2021 and, after he’d been separated from the family throughout the Covid lockdown, his birthday party was the first chance that many relatives got to see how he’d declined. “Those of us who live local to him had been pointing out memory problems, the way he repeated conversations, the way he muddled up who people were,” Allan says. “Everyone started to see what we’d been saying.”
Though he had visited the doctor, there was no proper testing. “They asked him: ‘Do you know what day of the week it is? Do you know who the prime minister is? Do you know how to switch on the telly?’” Allan says. When his father could handle those questions with ease, doctors assured him he was just getting older and that he had nothing to worry about.
“Dad started to change. He got put on a medication patch to try to slow it down, but by this point the progression has completely and utterly changed him, my dad is gone,” Allan says.
It was terrible for the family to watch their beloved patriarch wasting away, all while he knew what was happening to him. “Dad was going through this culture shock,” Allan thinks. “He kept saying: ‘It’s not nice, it’s horrible what’s happening.’ I think what he was trying to explain to me was that there were parts of his memory that were starting to be affected.”
Once, shortly after Gerald was diagnosed, Allan received a call from his mother in a state of panic. Gerald had driven to a friend’s house and got lost. The family mounted an area-wide search of North Tyneside, where they live, and eventually found him in a Morrisons car park with no memory of driving there. “That’s where the fear factor sets in,” Allan says. “It starts to have a huge impact on your life.”
By early 2023, the medication seemed to have stopped working and Gerald’s dementia continued to speed up, leaving Allan and his family at their wits’ end. “The state system for care is horrendous, means testing is horrendous, there’s a lack of people, a lack of social workers,” he says. “And it’s not the fault of the people who are left but it’s a broken system. You can’t just ring up someone and say you need help, you have to keep reaching out and trying to find the right number after ringing the general number. My wife and my mum have had to devote their lives to it just to keep pushing forward.”
For now, Gerald has a place in a local day care centre. “He thinks he works there, which is nice; he can get lost in his own little world,” Allan says. “At the start, we could gently correct him when he got confused, but we’re past that point now. We just have to pretend his mum and dad, brother and sister are still alive, when in reality they’re long, long, long dead. That’s the world we live in now. It’s challenging, distressing for all of the family.”
Yet in spite of his own personal sadness, Allan was inspired not to see other families going through the same trauma, and with his son and nephews decided to raise money for Race Against Dementia, one of the charities supported by this year’s Telegraph Charity Appeal.
“Nearly every year for the past decade, we’ve done a 24-hour go-karting challenge, and we wanted this year’s one to be in honour of Dad,” Allan says. “There are a lot of dementia charities, but given Race Against Dementia was founded by racing legend Jackie Stewart, it seemed like a good fit. After I did some research into the charity’s work in funding the careers of scientists looking into innovative cures for the illness, I was even more certain.”
The 24-hour karting challenge is organised annually by Teesside Karting in Middlesbrough and sees upwards of 100 pro-karts (“Two Honda generator engines strapped on to a go-kart chassis,” Allan explains) racing to complete as many 1.3-mile laps as they can over a 24-hour period. Drivers must each drive for an hour and a half, at an average speed of 60mph, before swapping with a teammate. At the midway point, they’re allowed a pit stop to change their front tyres.
“It takes it out of you, then you get out and the next driver goes in,” explains Allan, who says he usually survives with a few hours of sleep in a tent away from the track between his turns behind the wheel. “You need your core drivers but you need strategists who can find opportunities to save time in refuelling. It’s racing in its purest form.”
Though the race takes place in August, Allan says the weather is usually “inclement”. This year was particularly bad. “The track was a foot underwater this year,” he says. “We had council workers digging trenches to drain the water, fire pumps to get rid of the water, with all us competitors pitching in. We started damp and soggy and we finished damp and soggy. Our tents nearly got blown away by hurricane-type winds and rain.”
Over the 24-hour period, Allan did six hours of driving. In total, the team achieved more than 800 laps of the track – well over 1,000 miles altogether. “By the end, my hands had so many blisters all over them,” he says. “I had to use camping sponges on my knees and elbows to prevent them getting torn to shreds. The twilight hours from 2am to 6am are the worst. Everyone goes hazy and crazy. If anyone has a paddy or has a fallout in those hours, it’s a red-card moment. They have to go and stand in the corner and aren’t allowed to come back until they’re ready to talk again. Sleep deprivation, exhaustion and living off Pot Noodles and hamburgers does weird things to you!”
Even so, having raised £4,500 for Race Against Dementia, it was all worth it in the end. “I was kind of blown away,” Allan says. “I had donations from all over the world. Our title sponsor, Carl from Armstrong Nield Recruitment, donated a lot, and the charity itself was brilliant to work with. You start to see how many people are affected by dementia and want to see it beaten. It was very moving.”
Allan and his teammates, Kyle, Ricky, Callum, Nick, Wayne and Ben, have already pledged to enter 2024’s 24-hour karting competition for Race Against Dementia once more.
Race Against Dementia is one of four charities supported by the Telegraph Christmas Charity Appeal. The others are Go Beyond, the RAF Benevolent Fund and Marie Curie. To make a donation, please visit telegraph.co.uk/2023appeal or call 0151 284 1927