AB-headVery soon ‘Join dementia research’ will be nationally launched as an online service, helping to connect volunteers with researchers who are working on ways to understand and treat dementias.

We recently spoke to volunteer Andrew Brown, who is also one of our Champions in the North East, explaining to people and the press about the benefits of ‘Join dementia research’.

He has a truly valuable experience to give to the service;

“I think I have a unique perspective on research having been a researcher, a volunteer, a carer and a patient.”

Why did you get involved with ‘Join dementia research’?

Several reasons, really. I do have a history of dementia in my family, as my mother and at least five of her siblings – maybe more – had the condition. I cared for her for many years, and it is definitely in my interests to join in with the research to try and find a cure.

I also have Parkinson’s Disease, and we know a lot of people with Parkinson’s develop dementia later in life, so we want to understand why and what the connection is.
Thirdly, I’ve been involved with dementia research all my working life, since being a scientist in the 1980s, so you could say it’s in my blood!

I know future generations will benefit from the work we do now. You never know what might be discovered unexpectedly, like penicillin was. If people like myself don’t join in, then the basic research won’t be going on at all.

How have you been involved with the service?

I have to get my memory working to recall that! At the very beginning, I was part of the group that decided how the service would work in the first place, really from scratch.

We discussed what questions we should be asking people who wanted to participate in research – what questions should be mandatory about their information and what people didn’t have to answer, keeping their anonymity.

What has been happening lately on ‘Join dementia research’?

Really, we’ve been getting ready for the upcoming launch, I expect it’ll be a fairly busy time!
I’m looking forward to telling the press what has been happening and what will happen in the future with the service.

JDR_cmykHow would you motivate people to get involved with ‘Join dementia research’?

I think the best way is to explain to people about how you can develop dementia. For example, it isn’t just limited to older people – even those in their thirties can get it, with conditions like Young Onset Alzheimer’s Disease.

People should also be aware how quickly it can strike. I have a friend who just a few years ago was running an entire farm at the age of 56, single-handedly – and then two years later, he can’t remember how to drive a tractor.

His personality has completely changed, and it’s fairly devastating. It’s for people like him that we need to make the effort, to find a cure.

As a former researcher, and now a participant, what can you tell people about taking part in research?

I find it very enjoyable, fun even! I’ve always been interested in word and mathematical games, so I really enjoy the assessments which are all about recalling numbers and letters.
One test had me remember as many words as I could beginning with the same letter – so I tried to think of the longest words I can, so the researchers have trouble writing them down!

It really keeps your mind active, encouraging the brain to form new pathways and keep the old ones functioning.

Finally, what would you tell people who’ve never heard of ‘Join dementia research’?

People should know that research can take all sorts of shapes and forms. For example, there are studies into the best procedures of caring for people with dementias.

Or the benefits of physical exercise, and whether that might help fight the progression of some of these conditions. It isn’t just drug trials, which can be a very long, expensive and difficult progress of turning research into a practical use.

At the end of the day, the more people who join in with research, the more likely we are to find a treatment for dementias.

Hopefully we’ll see a snowball effect once the service is launched nationally and we see more people signing up.

Lady-LookingatleafletFind out more about Join dementia research, and you can help, by clicking on ‘Why sign up?’. You can also help us spread the word online, through social media, and with our free promotional material.

Have you been involved in a study on the service? What did you learn? If you are interested in telling your story, please complete the online sign up form.

If you would like to share your story, please email us at comms.jdr@nihr.ac.uk. Please follow us on Facebook + Twitter and share your story!