Case study: Taking part in Alzheimer's disease research: John's story
Taking part in Alzheimer's disease research: John's story
An Oxford grandfather taking part in a research trial into whether a new weight loss drug can help Alzheimer’s patients has urged others to consider joining studies.
Retired Cowley project manager John Beauclerk, 73, is part of a trial into whether semaglutide can slow cognitive decline and improve mental ability.
Semaglutide was made available on the NHS in September to support weight loss in eligible patients, along with diet and exercise.
It is also used to reduce blood sugar in type 2 diabetes and researchers are now examining if it can reduce inflammation in the brain, which is linked to Alzheimer’s.
John was among 27 people in England who took part in the EVOKE study, supported by the National Institute for Health and Care Research (NIHR), at Oxford’s Warneford Hospital.
Although John has not received a diagnosis of Alzheimer’s, he has been experiencing memory problems for over 10 years. His mother, Suzanne, suffered from dementia for 8 years before her death in 2010, aged 89.
John, who joined the trial in January, said: “Once I reached my 60s I realised that my memory wasn’t as good as it was. I could still function but was becoming a bit ‘scatter-brained’.
“I had to stop work as my job involved a lot of travel. I found it increasingly difficult to organise flights and hotels. I could still do my job well, but my thinking became clouded when I had to plan my travel.
“I was already aware of dementia because my mum had suffered with it before her death.”
John’s GP suggested he take part in the EVOKE study. He said: “I thought it would be interesting to take part in a study that had the potential to help others in the future.”
The trial randomly allocates participants to receive either one tablet of semaglutide daily or a placebo dummy drug. Researchers and participants do not know if they are taking the drug or placebo, to prevent bias.
Participation lasts around 3 years, during which time participants are invited to take memory tests to monitor progress and fill in questionnaires about how well they are managing their daily routines.
John, who retired in 2022, said: “I do struggle with the memory tests which makes me realise what little short-term memory I have. Although I completely understand the reason why I’m asked to take them, the tests tell me exactly how little I can remember, which is quite difficult to confront.”
EVOKE opened in 2021 and closed to new participants in June. The study will report its findings once all the data has been collated.
John, married to Joanna, 58, for more than 20 years, said: “We can help the next generation, that’s really what I’m interested in. Given that my mother had dementia and now me, I hope that these types of research trials can benefit my children and grandchildren, so they don’t have to suffer the same.
“Volunteering for trials is an essential part of the development of new drugs. The trial team makes me feel useful as a contributor to the research rather than a patient.”
Joanna, a primary school teacher, acts as a ‘study partner’, someone who helps the participant make the decision to join the study and helps report on their cognitive and ability to live their day-to-day life.
She said: “When John would do things like forget his keys in the morning, I wasn’t particularly concerned as it’s normal to forget the odd thing here and there. It was when he started repeating questions at dinner time that I started worrying.
“It’s difficult to see John struggle with forgetfulness but our family are trying to be patient with him. We answer his questions over and over again and support him the best we can.”
Dr Ivan Koychev, Senior Clinical Researcher at the University of Oxford and principal investigator for the study in the city, said: “We now know that people living with Alzheimer's disease have high levels of inflammation in their brains. This inflammation likely speeds up the progression of their dementia.
“Semaglutide is a drug that reduces inflammation and is effective in patients with type 2 diabetes. This study explores whether the drug could also be used to treat Alzheimer’s disease, potentially by reducing brain inflammation.”
Patients are also encouraged to ask their doctor or health professional about research opportunities and search trials you could take part in at bepartofresearch.uk.
People can also register their interest in taking part in dementia research studies at joindementiaresearch.nihr.ac.uk.