More than 55 million people have dementia worldwide. Rob, one of our research participants shares his story about taking part in Dementia Research here at NBT.
We were privileged to interview Rob, who is currently taking part in the AHEAD A-45 study. He shares with us his experiences and hopes for the future for people diagnosed with Dementia.
Researchers have learned that changes in the brains of people with Alzheimer’s disease start as many as 20 years before they notice symptoms like memory problems.
Amyloid is a protein that builds up in the brains of people who have AD. This build-up of amyloid protein in the brain is called “amyloid plaque” and may lead to impairment in memory and thinking. Research studies suggest that people with normal memory performance who have elevated levels of brain amyloid are at increased risk for memory problems, but not every person with amyloid build up will develop memory problems or AD dementia.
At NBT we are one of 100 sites world-wide who are asking volunteers between the age of 55 to 80 years of age to take part in the AHEAD A-45 study, to see if a study treatment with BAN2401 (also known as lecanemab) can help reduce the risk of developing Alzheimer’s disease.
The Bristol Brain Centre is one of the only brain health clinical services in the country. It has a strong research ethic offering research opportunities to people with and without dementia.
The research focuses on early diagnosis of dementia, understanding how memory is stored in the brain and how this can be enhanced through clinical trials.
Video Transcript
I'm Rob and I'm a retired enjoying my time in retirement so it's given me the chance to do all sorts of new things and get involved in activities I love walking I celebrated my retirement by walking a thousand miles around the coast of Wales with a tent on my back and just to prove that I was fit and I have done various long distance paths in the in the country.
So to take part in the study you you've got to have a degree of Alzheimer's dementia and which indeed they found, and to take part you've got to be prepared for that discovery to be made and take it from there I believe, that I ought to be doing everything I can to help any research into dementia as something that's important to me.
The actual assessment process encompasses various tests and things, that obviously makes you cause you to wonder what they're going to discover about you. But, in fact I wasn't too worried about that or concerned. Everybody was extremely caring and at every stage everything that they were doing was explained clearly and the reassurance at every level was good. As I have said before at any stage I was encouraged to withdraw if I had the slightest concern about doing something I wasn't comfortable doing.
Having been accepted onto the trial it was a moment of excitement for me. I was very pleased to do it and pleased that I've been accepted.
I think the major thing about once you are accepted and being able to be accepted is that you've got to be prepared to commit time. It's a four-year study and you are required to go to the brain Centre in Southmead for once a month for several hours and that for me was my major consideration rather than any consideration about my own health.
I attend the Bristol Brain Centre every month for a few hours and I receive an infusion of the drug or a placebo I don't know which. I also have regular cognitive tests health checks and a MRI brain scan every three months.
To not know whether you're having the actual drug or the placebo is rather strange to begin with but you get you get used to the Cloak and Dagger bits of the actual liquid being covered in a black bag so that nobody knows what's happening it's all quite exciting really.
It's made clear at the beginning of the trial that you will never know and you have to accept that as part of the condition of taking part. To anyone thinking of taking part in this study and not necessarily this one, just be open about it I think I'd recommend anybody to put themselves forward for assessment.
You lose nothing by being assessed you perhaps gain something by finding something out about yourself as long as you're prepared for that to happen.
The big decision about whether to take part in the trial comes after the assessment, so, yes you could consider it. I would encourage you to do so.
I hope my participation and those of the other people taking part in the trial across the world that at least the quality of life for people who suffer in dementia can be improved.