Taking part in research
From the summer 2017 issue of our Care and Cure magazine, find out what it's like to take part in research into dementia.
Martin Keats is taking part in the PREVENT Dementia study, which receives funding from Alzheimer’s Society. He tells us about the study and reflects on his experience of having a lumbar puncture for research.
I found out about the PREVENT Dementia study from a colleague while I was working at Imperial College London. She mentioned that they were looking for people aged between 40 and 59, so I thought I’d put myself forward to help out. I’m not aware that anyone in my family has ever had dementia, but I felt it would be good to get involved. My colleague informed me that the study included regular brain scans and an optional lumbar puncture, and she sent me more detailed information about it by email.
I joined the study in May 2014 after reading information about it and completing the consent forms, including one for the lumbar puncture. The study involves being assessed every two years, so I’ve had two assessments so far – a baseline in 2014 and a follow up in 2016. The idea is that we will be assessed for years to come so that the earliest signs of any onset of dementia might be studied using the different types of information collected.
The main session involves going to an assessment clinic for most of a day. It starts with a fasting blood sample and things like weight and blood pressure measurements, followed by breakfast. The researchers ask questions about any medications you’re taking and if you’ve had any medical problems, and they do a series of health checks.
Then there is a series of computer-based cognitive tests, which I found enjoyable but rather challenging. My childhood memories of doing similar tests at school came flooding back! Later I went to have a brain scan, which lasted about an hour.
Not so scary after all
At first I was a little wary of the idea of a lumbar puncture, fearing the possibility of back pain or headache, which are common side-effects. I am used to migraine headaches and was not keen on experiencing another, brought on by a medical procedure. The notes given to me before I joined the study were pretty reassuring and the doctor who performed it let me know that it is a fairly common procedure in the NHS.
Actually, the lumbar puncture procedure went like clockwork. I was given a local anaesthetic and from there on, though fully conscious, I felt nothing at all. I was also fortunate not to experience any subsequent headache or back pain.
My advice for anyone considering taking part in research would very much depend on how demanding the study might prove to be. I find being involved in the PREVENT study rather fun and scientifically interesting. It is also reassuring to know that, if any potential health issues arise out of the tests, I would be referred to my GP for advice or treatment.