Volunteer stories: Bernard Clarke
Bernard Clarke (77), from Oxford, was the first volunteer to sign up to the Deep and Frequent Phenotyping (DFP) study – the most detailed study of its kind into early Alzheimer's disease.
DFP is recruiting 250 participants from across the UK, all of whom will undergo a range of tests – from brain scans and cognitive assessments to retinal scans and a lumbar puncture – to help scientists understand the changes taking place in the brain and body before symptoms of Alzheimer's disease start to appear. This will allow researchers to pinpoint early warning signs of the condition and track responses to new treatments.
We caught up with Bernard, a retired headteacher, on his return to the Oxford Centre for Human Brain Activity (OHBA) as part of his 12-month follow-up testing.
"I heard about the DFP study online – possibly on Facebook – and saw that it was looking for volunteers. Although I'm retired, my wife Anthea and I are pretty active: we have grandchildren to keep us busy, I do photography, and we travel when we can. I'm always looking for new experiences and thought I'd give this a whirl, hoping it would prove to be useful.
"Emma, one of the research assistants on the study, talked me through everything and gave me lots to read. The first round of tests was very interesting, as I'd never had anything like a MEG or MRI scan before. The ophthalmology aspect was particularly fascinating. Anthea, who worked as a nurse for many years, was quite anxious about the lumbar puncture, but it turned out to be OK.
"My mother died at the age of 102, ultimately from dementia, and then after I'd started volunteering for DFP my brother, who lived abroad, developed and died from Lewy body dementia. So that gave me a bit of added impetus to keep going with the study.
"I think I've had nine visits now, including my initial screening appointment, so it is quite a big commitment. Obviously it's a personal decision for each individual, but my own reflection of taking part is that although it can be pretty heavy duty – and it may be several years before we see the results – I would definitely recommend volunteering for a research study like this one. I've found it highly interesting and have enjoyed meeting the young researchers involved in the trial."
DFP is recruiting 250 participants from across the UK who are over 60 and in good health, but with a family history of dementia. Visit the trial registration page for more detailed information on how to take part.