Some or you may or may not know but I’m passionate about research.While I was still working I took part in a social research study carried out by the University of the West of Scotland on the challenges faced by those of us with dementia and still in work – this led to the Alzheimer Society publishing it’s guidelines for employers as there was so little out there – you can read all about it on the Alzheimer website –
I’m still taking part in a clinical trial and recently had my 6 monthly check up from the team. I can’t stress enough how much better you’re looked after when on a clinical trial than you are when you’re just left in the system. In the year since diagnosis I’ve had 2 appointments at the memory clinic and simply had the mini mental test repeated. In 6 months on the trial I’ve had 3 visits and had blood tests as well as mini mental assessment. They’re also on the end of the phone if you have any questions outside of these visits too. They look after you well because they are looking into whether a drug works or not. Drug trials are often to prove that drugs don’t work as well as trying to find ones that improve a condition.
The one I’m taking part in is the MADE trial – I’m testing is Minocycline – It’s an antibiotic drug currently used in the treatment of acne and they believe may help reduce inflammation of the brain in those of us with Alzheimers. I have a 1 in 3 chance of having the placebo as sadly you also have to have a control set of participants. If I’m on the drug, even if it doesn’t work, I should be free of acne –ha!
I’m on the drug for 2 years, taking it alongside Donepezil. Lisa, the research assistant comes to me – I don’t even have to go to them. She brings the next batch of tablets, checks how I am; if I’ve had any symptoms. When I have had issues, they’ve immediately gone back to the researcher and then rung me back with advice or information. For example, I had to have antibiotics for another problem not long ago and my Gp didn’t know what to give me because of the trial drug being an antibiotic. The researcher immediately contacted my Gp and rang me with advice on what to prescribe. Perfect:)
Being involved in research makes me feel valued.
When you’re diagnosed with a dementia there’s not a lot you can do but develop coping strategies to outmaneuver the disease. However taking part in research makes me feel as though I’m doing something which might help stop my daughters feeling the same inevitability a diagnosis currently brings.Being involved gives you that sense of purpose. Research doesn’t just mean clinical trials. Social research is equally important for finding the best ways to live for those of us already diagnosed.
We have to have an alternative to simply wishing or hoping that you won’t get dementia and that can only happen through research.
But please don’t just sit back and assume others will be those willing volunteers; do something yourself and get involved.