Mary has participated in a number of research studies with the NIHR Maudsley Biomedical Research Unit for Dementia (BRU). Most recently, she took part in the MADE trial, which is investigating whether use of an antibiotic treatment called minocycline could slow the progression of Alzheimer’s disease. Here, Mary tells us about her experience of taking part in research.
I’ve lived and worked in a lot of countries, especially in the Far East, but about ten years ago I came back to the UK and moved to Purley, a South London suburb. I first became aware of my memory problems when my younger brother noticed that I was repeating myself. Eventually I visited the doctor and was diagnosed with Alzheimer’s disease.
Since I was diagnosed, I’ve been involved in doing quite a few research studies. For this study, it’s nearly all done from home. I have a research worker assigned to me called Hannah, and when she visits every few months, we’ll do a memory test, and she’ll also take my blood. Hannah tells me in advance what date and time she’s going to visit, and if I can’t make a time we’ll arrange something that works for me.
When Hannah comes over, she brings a big box of pills to take, and then takes it back once I’ve used them all. My younger brother helps me make sure I’m taking the things properly – for this study, I take one in the morning and one in the afternoon. The pills are colour coded so it makes it easier to work out what you need to take, but I’m not sure what the difference is between the pills.
At the very beginning of the study, I had to go to hospital and they put me in a brain scanning machine. To be honest, I totally freaked out about the scan at first, but I managed to get over it. The staff there were really nice about it, so I grinned and bore it, and it was only just the once! Something they do which helped me is put a mirror in, so I could see myself rather than the inside of the machine. They also ask you to say something if there are any problems.
Participating has been very interesting. At the beginning, when they asked me if it would be OK if I took part, I said, "whatever you want to do, you can do it"! I was motivated to take part because I wanted to understand it all better.
I’d definitely recommend participating in research to someone else – if you can give something back, it’s silly not to. There are some people who aren’t able to take part in these things, so if you can, you should.
For another perspective on taking part in research, read Peter and Dot's story.
Our website has more information about participating in dementia research and in other research projects at the NIHR Maudsley BRC/U, and NIHR has information on national opportunities to take part in research.