Grandfather who closed business after dementia diagnosis backs NHS research
A Berkshire grandfather who had to close his fencing business after being diagnosed with dementia aged 62 is taking part in NHS research.
Reading’s Philip Albrighton, 66, has volunteered for studies into memory tests, the genetics of dementia and improving care for people with the condition and their families.
He was diagnosed with Lewy body dementia in 2016. Soon after he had to stop driving and close FenceTek, which he ran for 41 years in Reading with his wife Jayne. The business was re-opened by his former employees as Metafence.
The grandfather-of-eleven said: “My staff were asking my wife if I was okay as I was struggling to get my work done, running the business and forgetting how to write.
“At the end of the day, we were in a situation where it was better to close it down than deal with the hassle of trying to sell it.
“It felt terrible at the time, like with the car. I used to do 500 miles a week in some cases. I was gutted. My whole life as I knew it was just gone. I was fencing since I was 12.”
Lewy body dementia is caused by clumps of protein forming inside brain cells, which leads to gradual changes and damage in the brain. It is rare in people under 65.
Like Alzheimer’s disease, symptoms include hallucinations and memory problems, but it can also cause slow movement, stiff limbs, unsteadiness and falls.
Mr Albrighton said: “The memory loss comes in waves. I ask ‘why have I got this?’. I'm too young to have this and I’m worried about what will happen. I’m worried I won’t remember the wife or the grandkids, because that’s all coming. I’m waiting for that.
“I’m in limbo to be honest because it hasn’t hit me yet, it’s hiding round the corner and it’s going to get to me eventually.”
Jayne, married to Phillip for 45 years, noticed signs of dementia when he was 57. She said: “He was trying to hide it from me at first, but of course we all noticed things happening. In the beginning he used to do strange things like fill carrier bags with dead leaves and hide them in the garage.
“His GP was saying that he had depression, anxiety and stress. He was recommended for a scan and that’s where the diagnosis came from.”
Mrs Albrighton, 60, said: “He’s not the same person at all. Losing his driving licence and selling the business, that was him. Now they’ve gone, to me he just seems like he’s lost.
“His memory’s getting worse. I asked him to clean up after he finished his drink and he just said ‘okay’ and walked past it and went to bed. It’s not him, it’s the illness.
“It’s silly things like that. Irritating things. He’s got a mountain of clothes in the bedroom. He used to put them in the wash but now he’s got this pile in the corner of the bedroom, which used to irritate me, but now, in the grand scheme of things, it doesn’t really matter.
“We don’t really go out in the evening anymore, we’ll go out late afternoon because by seven o’clock he’s just done in. His mobility’s dreadful. We drove to the pub even though it’s just across the road. It was early, but to get him back walking would take ages.”
Mrs Albrighton learned about research while being seen at the memory clinic at Thatcham’s Beechcroft Community Mental Health Service for older adults. They have since taken part in six dementia research studies supported by the National Institute for Health Research (NIHR) during home visits from researchers at Berkshire Healthcare NHS Foundation Trust.
Philip said: “There’s so many people with dementia who feel like me and I want to do what I can to help them.”
Jayne said: “We wanted to take part in research so there’s more insight into the illness and if other people can benefit from it, that’s brilliant.
“We’re more open talking about our experiences than other people, so we’re happy to take part.”
Ioana Marinescu, a clinical studies assistant at the trust, said: “Dementia is more common in people over the age of 65, but it can also affect younger people. Early onset of dementia can begin when people are in their 30s, 40s or 50s.
“Those who develop the condition young may be very reluctant to accept there is anything wrong when they are otherwise fit and well, and they may put off visiting their doctor.
“It is only through research that we can understand what causes dementia, develop effective treatments, improve care and hopefully one day to find a cure for it.
“It also gives us an opportunity to see the perspective of people living with dementia and the view of their families and their carers.”
Sign up to Join Dementia Research to be told of studies seeking participants at www.joindementiaresearch.nihr.ac.uk or call 0300 111 5 111 or 0300 222 1122.