Welcome to ‘Join dementia research’, where we help volunteers connect with researchers, to work together on important studies into dementia. Some of our volunteers are leading the way by WARRENbecoming Champions, helping others understand the benefits of participating in research.

Today we are hearing from Warren, who lives near Hull in East Yorkshire and cares for his wife Irene, who has Alzheimer’s Disease.

“I became involved in dementia because of my wife having Alzheimer’s disease. It has been a long hard road without any rehearsal.
I had to retire in May 2012 because Irene could not cope any longer, even with carers assisting her in a morning.”

“My life has changed beyond all recognition, and it’s a struggle every day to cope with the situation in which I find myself. I am fortunate in that Irene still has a lovely nature.”

“We have taken part in every piece of research which has come our way – even if it doesn’t help us, I hope that it will help those people who will become involved with dementia in the future.”

“I do believe that this disease can be beaten and I will take part in any study on the road to achieve this. We should all endeavour to create a warm, caring society, and leave the world a better place, so we have enrolled with ‘Join dementia research’ and hope to encourage others to do so.”

How did you find yourself first involved with Join dementia research?

I was asked actually. I knew it was going to be a hard road, what with being a full-time carer for my wife, and it is exhausting. Then I thought it might be a break for me, and to get people to engage with research – that’s the way to beat this disease.

It’s one thing to learn how to live with it if you’ve got it, but the important thing is to prevent it in the first place.

If we do get this started and get the research going, we could see the UK become a centre of excellence for dementia research – bringing in more brains, and more money for the economy!

There’s lots of advantages here, and I really think people need to be positive.

How have you been involved with the service? JDR_cmyk

I’ve spoken on local radio before. We talked in general about dementia, and we told people about Join Dementia Research and getting in touch via the helplines. I’ve also mentioned it in the local newspaper, and they’ve been sharing the details as well.

I’ve spoken to the council press office as well, and asked if we could put something in the free paper and the carer’s magazine. After that, we’ll be travelling around hitting all the memory cafes in the region – just trying to get the message across and learn as I go along!

Now, we’re waiting for the national launch, and I want to keep the ball rolling and put the energy in then when everyone becomes aware of it.

Do you feel like Irene benefits from taking part in research?

Oh, absolutely! I remember taking part in stimulation group therapy – she was animated afterwards, laughing and chatting about it. It changed her mood and everything.

Another was VALID, valuing active life in dementia, and we had an occupational therapist visit. She really brought Irene out of herself, and it helped us because I made changes around the house to benefit Irene. We’re always learning, all the time!

We’ve taken part in surveys, in interviews, everything we’ve been asked to do we’ve done. We absolutely feel like we’re contributing, and I only wish we had the time and energy to do more.

How would you motivate people to get involved with Join dementia research?

The main thing for me is, the government’s on board and we have the money. All we need are people to come on board and register so the research teams can get on with the job!

The only way we’re going to beat this thing is through the research.

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!