"I’m grieving and no one can take the pain away, but he is the best granddad I know" - Staffordshire grandad to take part in Alzheimer's research after telling family he feels 'like he's disappearing"
A man living with Alzheimer’s disease says his condition feels like he is “disappearing."
Alan Cope, from Lichfield, is taking part in research as he seeks to benefit himself and others in the future, highlighting his condition to coincide with the 11th birthday of Join Dementia Research.
The 69-year-old, a former parish councillor, signed up to the NIHR-supported READ-OUT – REAl world Dementia OUTcomes: Observational Study.
READ-OUT aims to introduce blood tests into the NHS within the next 5 years. The results will assess whether these can be used to diagnose dementia faster than current brain scans.
Alan was diagnosed with the disease in October 2022 and now struggles to perform daily tasks. His wife Donna, 62, had concerns about her husband’s memory loss a decade ago.
Alan, whose mum, aged 99, and 3 uncles also have dementia, took part in the study through Midlands Partnership University NHS Foundation Trust (MPFT).
A retired salesman, he wants the condition more widely recognised and researched.
Alan and Donna, who have 2 children and 4 grandchildren, are determined to fight the disease head on, so Alan is engaged mentally and physically on a daily basis. He walks their two Labradors, Arthur and Teddy and tends to their 4 ducks and 4 chickens.
His grandchildren keep him busy playing and set tasks, and the couple have a friend who comes to socialise with him to provide further stimulation.
“I try my best and I look at things that I can do rather than what I can’t,” said Alan. “The dogs help me and I feel more comfortable having them with me.”
Donna, a chief financial officer for a dental group, said the Alzheimer’s diagnosis “smacked me like a blow to the face”, but added: “We have both said from day one that we would take part in any studies because there’s a chance it could help Alan, but if not, then it could help people in the future.
“Alan is a very nice, gentle, quiet man who does not show any outward signs of dementia. But the truth is he needs support and assistance, from taking tablets to having to give him very simple instructions, one action at a time.
“It’s a complete decline in the competence and ability to carry out the most basic tasks. For example, in years gone by, we’d discuss jobs in the house, maybe refitting the bathroom, and in no time at all, he’d be getting on with it.
“He can’t prepare meals any more. So in later years, we have done more things together. He gave up his driving licence 2 years ago because of our concerns about him driving. I’m very proud of him for this.
“Alan has described it like he is disappearing. I’m sad and I’m grieving and no one can take the pain away. But he is the best granddad I know and the grandkids adore him.”
Led by the Universities of Oxford and Cambridge, the multi-million pound programme is supported by the NIHR, Alzheimer’s Society, Alzheimer’s Research UK, Gates Ventures and the People’s Postcode Lottery.
If the study is successful, it could make dementia diagnosis more accessible and less stressful for patients.
