Alzheimer’s patient encourages others to sign up to take part in dementia research
This article was originally posted on NIHR website.
A retired pottery shop owner with early Alzheimer’s disease has said research has given him a new hope for life.
Eighty-year-old Martin Wallis, from Honiton, is currently taking part in a clinical trial at Royal Devon and Exeter NHS Foundation Trust.
The study, being supported by the National Institute for Health Research (NIHR) in the South West, the research arm of the NHS, is one of many being carried out locally looking to halt the progression of dementia, the biggest killer in the UK.
Before joining the study last summer Martin said he was unable to read or write and had been told he was not allowed to drive following his dementia diagnosis two years prior.
“My wife, Christine, and I were left completely terrified after receiving my dementia diagnosis,” he said. “We were in a complete daze and didn’t know what to do. My diagnosis made me feel really depressed and hopeless.
“But, when I went for further testing to see what type of dementia I had, which I was later told was Alzheimer’s, we were approached by a lovely research nurse who offered me the chance to take part in this new study. Having just been told there was no cure for my condition, I was delighted to be offered such an opportunity.”
Neither the clinicians nor Martin know if he is on the active arm of the trial, or receiving the placebo. But, for Martin, the benefits so far have been profound.
“The trial has given me a new hope for life,” he said. “It’s very intense in terms of the checks and tests that you go through but it’s so very thorough that I feel I get a level of care that you wouldn’t ordinarily get through the NHS, or even through private healthcare. They really look after Christine and I – we can’t sing their praises enough. Taking part in this trial has changed both of our lives for the better.
“I don’t know whether it’s the newfound hope that has spurred me on or whether it’s the drug I’m trialling, but, whatever, I am now able to read again and, with a bit of help, am writing a book about my life.”
In the South West 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.
Ray Sheridan, Dementia and Neurodegeneration lead for the NIHR in the South West and Consultant Physician at Royal Devon and Exeter NHS Foundation Trust Royal, said: “Through clinical research many diseases are now curable or have better treatment options. For dementia we don’t yet have a cure and we need better treatments. Through clinical trials we hope to make small steps forward and maybe one day the big leap forward. There is a massive effort locally and across the UK to find better ways to help people with dementia both in our universities and our hospitals.
“It’s really important that we can link up patients with dementia who want to participate in clinical trials with the researchers. Signing up for dementia research through Join Dementia Research is a great way of identifying yourself as interested and so that allows the researchers to contact you if you are suitable for a particular study. You haven’t committed yourself to saying “yes” to any specific trial only that it gives permission for you to be contacted.
“Research includes everything from learning how to better live with dementia, how to improve telling patients their diagnosis, blood test based research looking at genetics, through to better drugs and different ways of taking pictures of the brain. New studies are opened regularly. With patients and researchers working together we hope to be able to improve the care and lives of our patients, carers and families living with dementia.”
To date 130 people across Devon, Cornwall, Somerset and the Isles of Scilly have been successfully enrolled into studies as part of the Department of Health and Social Care-funded service and there are currently 11 studies in the region recruiting.
“There is a cure out there,” said Martin. “One of these trials has to click soon. I can’t recommend taking part in research enough.”