"God forbid my grandchildren should ever suffer this horrible disease but if they should I want to be able to say that your granny helped find a cure”
A retired crown court usher recently diagnosed with dementia is taking part in research to ensure a cure is found before any of her loved ones suffer the same fate.
Eighty-year-old Ann Matthews, from Exeter, was diagnosed with early onset Alzheimer’s disease at the end of last year. She is currently taking part in a clinical trial at Royal Devon and Exeter NHS Foundation Trust.
Ann, who lives with her husband Tony, has shared her story as part of Dementia Action Week, which takes place from 21-27 May, and hopes others will be encouraged to take part in research opportunities.
“When I was told I had Alzheimer’s I just accepted it really, there’s nothing I could do about it,” said Ann. “Dementia is very sad. I’ve seen first-hand what it does to people - I have a friend with the same disease and so I know how bad it gets.”
Ann was offered the chance to take part in a clinical trial at the start of this year. The study, being supported by the National Institute for Health Research (NIHR) in the South West, is one of many being carried out locally looking to halt the progression of dementia, the biggest killer in the UK.
“I had absolutely no qualms about taking part in research,” said Ann. “If it doesn’t help me it might help people in the future which is, of course, what is necessary. God forbid my grandchildren or baby great grandchildren ever suffer this horrible disease but if they should I want to be able to say that your granny helped find a cure and here it is. That is my driver.”
Tony, 84, a retired electrical engineer, is supportive of his wife’s decision to take part in the study.
“The diagnosis didn’t mean much to me,” he said. “I already knew what the results would be and actually I was pleased we finally knew what it was and could at least try to do something about it. When we’re out she will sometimes say things that really don’t have anything to do with what’s going on, but she chirps away like nobody’s business. It’s almost as if the CD is full and you can’t record any more on it. That’s how it feels.
“I’m really supportive of Ann’s decision to take part in the study – it’s the only way we are ever going to find a cure for this disease. I suppose you could say I’m also quietly optimistic. She’s only been diagnosed a few months and is in the very early stages of the disease. There has to be something that can stop it in its tracks. Maybe this study will find that cure.”
In the South West more than 1,900 volunteers have registered with Join Dementia Research, a national initiative which encourages people to register their interest in taking part in clinical research into the condition, since 2015.
Dr Joe Butchart, clinical research sub-specialty lead for dementia in Devon and consultant physician at Royal Devon and Exeter NHS Foundation Trust, said: “We are so grateful to Ann and Tony for their help with this vital research. Alzheimer’s disease is the commonest cause of dementia and we currently have no cure. However, research is now helping us to understand how Alzheimer’s disease starts, and we are very hopeful that further research will lead to better treatments for the disease.
“The research that Ann and Tony are helping with, in Exeter now, will help us to prevent and treat Alzheimer’s disease in the future. We desperately need more volunteers like Ann and Tony to sign up with the NHS Join Dementia Research register so that we can continue this vital research. For people with dementia, now and in the future, research is hope.”
To register your interest in dementia research, as a healthy volunteer, or as someone with a diagnosis, visit the website www.joindementiaresearch.nihr.ac.uk
