On it’s 3rd Anniversary Simon Denegri looks back at how people with dementia and carers helped build Join Dementia Research.

Join Dementia Research Denegri

Simon Denegri, NIHR National Director for Patients and the Public in Research

This article was originally published on Simon Denegri’s website.

This Saturday 24th February Join Dementia Research (JDR) celebrates its third birthday as a fully functioning service where people can register their interest in participating in dementia research.

I am very proud to have been a small part of the JDR story. I Chaired the Lay Champions Group (see below) at the very beginning of the site’s development and did a few other things along the way. Others have done a whole lot more not least it’s Champions (more of them later). Here are a few public involvement memories, factoids, and current info I thought you might like.

10: Join Dementia Research was formally launched as a service in 2015. But it started life some time before that as a project called RAFT (I am sure it was called other things too). Keeping it afloat was never in doubt! All of the crew survived. Some in better shape than others.

9. From the very beginning and at every step of the way Join Dementia Research has involved people with dementia and carers in its design and development. From governance to the tech stuff, they helped with everything. Therein nailing the myth that some things are just too complex for ‘ordinary’ people to be part of. Here’s a blog from early 2015 in which former carer, Susie Hewer, talks about her involvement. Susie has a great blog of her own by the way called Extremeknittingredhead

8. The very first meeting of the Lay Champions Group took place on 9th October 2012 in Room 7 at Friends Meeting House opposite Euston station. The notes of the first meeting conclude with this bullet point: ‘The Group is very enthusiastic about the Register, and its aims to put the patient more in the ‘driving seat’ for research opportunities.’

7. By my calculation, on average 8 JDR volunteers a day have been signed up to dementia research studies since it began. Here’a good example of how JDR helps get people into trials faster, easier. I think we can safely say that the expenses and reimbursement we paid the 12 people who attended that first meeting and the others who were involved in the early days has been paid for many times over. If you look at an extract of the priorities and key issues it identified at the beginning, we’ve done pretty well together to keep them in mind and address them well. These are some of the other bullet points from that meeting:

denegri join dementia research

6. The very first people with dementia and carers to be involved in Join Dementia Research were called ‘Lay Champions.’ They didn’t do any laying about, that’s for sure. I seem to remember Sue Boex and Roger Kline (another two Champions) attending a lock-in to work through the details of the site in all its complications. To this day they help to spread the word as well as make Join Dementia Research the best it can be. Perhaps that’s why we now call them Join Dementia Research Champions! Here’s how you can become one.

5. Like a lot of brilliant things in life Join Dementia Research became possible when people started to talk to one another. JDR is brought to you, me, us by a partnership of the NIHR, Alzheimer’s Research UKAlzheimer’s SocietyAlzheimer’s Scotland and people with dementia and carers. The charities don’t just help to promote it they also run helplines for people who have questions about Join Dementia Research. A host of NHS, public and commercial organisations now use JDR.

4: Speaking about the aforementioned Join Dementia Research champions, some of them have become best-selling authors! They were always hot on Communications and helped us come up with the JDR name in January 2014.

3. Join Dementia Research is not just a website you know. Oh no. Oh no, no, no. Recently it has been piloting kiosks in pharmacies where you can sign up while getting your medicines.

2. As at the time of writing, 32,611 volunteers have signed up.

1. It’s open 24/7 and you can sign up here today. Go for it!

Happy Birthday JDR.

join dementia research