Taking part in research - Peter and Dot's story

Peter is taking part in the NILVAD trial, a study investigating whether a drug usually used to reduce high blood pressure can slow down the disease course of Alzheimer’s disease.  He has been participating in research since 2009.  Here, Peter and his wife Dot tell us about their experience of participating in research.

Dot: A few years ago now, I noticed that Peter was becoming a bit forgetful, so we went to the doctors, and Peter was referred to a local specialist unit for a check-up. That was where we met the researchers, who explained that they were running a programme to test different treatments.

Peter: We discussed taking part in the programme, and in the end I said “If it’s going to help somebody, I’ll do it!”.  That’s how it came about.

Dot: One of the nice things about taking part is that we’ve met a lot of people coming here, and lots of them are in the same position as us.  So it’s not a hardship – in fact we’re still in touch with some of the people we’ve met.

Peter:  After we did the first study, they then told us they were doing another one, so we signed up to that, and I think this is the third one we’ve done.  They usually last around two years or something like that.  To be honest, I don’t know exactly what I do when I see the researchers, but I think that’s the idea!

Dot:  We make visits to the research building once a month.  In the first study, only certain people actually received a medication, and the rest got a placebo – you’d never know who was getting what.  So as long as you were alright with that, you could take part.  We’d definitely encourage anybody else who was thinking about participating in research to do it.  When we mentioned it to my daughter, there had recently been some news about a clinical trial where some of the people participating had got ill, so she was a bit concerned about it, but we knew that the trial was well organised so we weren’t concerned.  We had really good information about what was involved, and all the arrangements were made very clear to us. 

Peter:  I’ve always been good at maths, and even though I have problems with my memory, I feel like my mathematical abilities may have stopped me getting worse – I still like a little gamble on the horses which keeps my skills in!  As well as being given pills or injections, taking part in the research involves things like memory tests, and general health checks.  They give us a little medical kit which we take home, and we bring the box back to prove how many pills we’ve taken.  As far as we know, this trial isn’t doing as well as they thought it would, which is a bit of a shame, but things will improve eventually.  I wouldn’t mind doing another programme if they thought I could help.

Dot: We’re quite happy to come.  Peter’s still very fit and able to get out and about, but the researchers are very careful to check that you’re well enough to take part, and as long as we are, we’re happy to do it.  They won’t make you do it if it’s a big strain on you.  The people we’ve met here are lovely, they’re so nice and kind.

Peter: It’s nice to feel that we’re doing something – helping somebody else in a few years’ time.  We put the time aside and enjoy the day out!

For another perspective on taking part in research, read Mary'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.