Summer meeting of Join Dementia Research

Last Thursday was the summer meeting of Join Dementia Research (JDR). The day started off well as Virgin East coast were giving out free coffee and cake ! – trying to make up for all the cancellations last Saturday me thinks. Well, I’ve forgiven them, especially after they gave me lots of freebies too – I’m a sucker for free coffee and freebies first thing in a morning – they hooked me in!!

The meeting was in the wonderful setting of William Goodenough House in Mecklenburgh square – 10 minutes walk from Kings Cross so a bonus for me!. It was a lovely day and all in the world was wonderful, including the state of my brain:)

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I got there and was immediately met by Hilary Doxford and Chris Roberts & wife – both whom also have dementia – Warren Branton, my partner in crime in the North Yorkshire region for championing JDR and who looks after his wife who has Alzheimers. We had a cuppa and catch up and me and Chris took the obligatory photo to get twitter started…….

Me and Hilary Doxford  (Vice Chair on European Working Group of People with Dementia)
Me and Hilary Doxford (Vice Chair on European Working Group of People with Dementia)

Simon Denegri opened proceedings – chair of many things to do with research! We went around the room and said all our hellos by way of introduction.

We were given the current stats from the web site –  790 with a diagnosis have signed up – nearly 1/3 have been signed up to a study – 8149 volunteers through the web site – 1470 healthy and with dementia recruited to studies in total – all going in the right direction!
Adam Smith gave an update – Huge increase in demand for studies to be entered onto JDR over last 3 months – particularly research being carried out by Phd students.

Brilliant, as Phd students  are the research leaders of the future.

Lots of variety of research which balance out drugs trials as they’re social as well – so important for those of us already diagnosed with dementia.
Of those that have signed up, 18% have signed up via help desk – 10% don’t have email – so all these were done by paper or over the phone. This shows that the paper option is still much needed.

If every GP surgery signed up 5 people we’d get 10000 people sign up!!!

In some areas Gps are coming on board but many are still acting as ‘Gatekeepers’. In effect, they’re making the decision for the patient instead of empowering the patient to make their own decision.

If only Gps could see the value of being involved in research on the well-being of the patient, maybe then they’d change their mind.

Laura Ross and Andrea Fisher – the comms and marketing team – came next and told us the news that JDR has now been launched in Wales and would soon be launched in Northern Ireland.
They showed us an animation that will go out on the web site soon– I was involved with the design and very pleased with it’s simplicity.

For those with smartphones they’ve now developed an easier way to sign up via a simple face book page – brilliant, as there’s nothing more frustrating than trying to fill out a form on a phone! (not that I’ve ever tried……..

Claire Walton was there from the Alzheimer Society and spoke of the forthcoming Memory walks as being an opportunity to promote JDR – place to wear our t-shirts and give out leaflets – I’ve got my T Shirt at the ready! You can sign up for one of the memory walks around the country by going to:
https://www.memorywalk.org.uk/find-a-walk/ They’re a great and simple way to get involved.

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Piers Kotting arrived after the tea break – you may remember I promoted JDR with him at the House of Commons recently.

Piers Kotting and Dita Ghosh told us about a brilliant new pilot about to start
The aim is to create short informative videos in a question and answer style. There would then be a bank of ‘video’ questions online for people who are considering joining up could refer to when looking for answers to queries. Sadly it’s not being piloted in my area – probably a good thing to prevent me volunteering –ha!

It was a great meeting and we ended by saying the next one may be our Christmas party!!! Who dared to mention the C word already!!

Great day, great company, great to be involved – anyone can help promote!

 

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About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

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