National launch of ‘Join Dementia Research’

Tuesday 24th February sees the official launch of Join Dementia Research. As you’re reading this I’ll be on day 2 in London at the DeNDRoN offices and University College Hospital where the launch is due to take place. I’ve been teamed up with the wonderful Susie Hewer. Susie will be giving her slant on the advantages from the perspective of a carer and me from the person living with dementia.

My blogs next Monday and Tuesday will tell you all what really happened over the 2 days along with some photos I hope😊 If I was very clever I’d be tweeting the days events but since it’s taken me 58years to get into blogging, tweeting may take a tad longer………..

I’m passionate about research. There are new studies coming onto the database all the time. It’s not only those with dementia that are needed to sign up, there are studies for the healthy and the facility for carers to sign up their loved ones. As it develops, more and more studies will become available.

We’re in the same situation now with dementia as we were with cancer 40 years ago. Money and resources were ploughed into cancer research which resulted in pioneering new treatment and patients now surviving cancer instead of a diagnosis meaning a death sentence – we need the same to happen with dementia.

Join Dementia Research’ is all set to address these issues, as it’s got the potential to become a ‘one-stop shop’ for researchers and willing volunteers. Now, clinicians will have no excuse for not encouraging patients to take part in research – where once they would have to assess their applicability, taking up valuable time, now they will only need to hand over a Join Dementia Research leaflet and offer words of encouragement. This will empower the public to sign up for themselves. I want to promote and encourage people to register their interest, but also encourage health professionals to approach and encourage their patients to register as well.

We also need to encourage those diagnosed with early onset Alzheimer’s or anyone making a Lasting Power of Attorney to state in their LPA the advantage of documenting their willingness to take part in research once they lose mental capacity, if they so wish. This would take away any ethical dilemmas faced by families in the future and give researchers access to those who are difficult to find at present.

Signing up to ‘Join Dementia Research’ will allow future generations to be less fearful of having a diagnosis of dementia. I’m not naïve enough to think that a cure found tomorrow would mend the part of my brain already damaged, but it would take away that inevitability that a diagnosis currently brings. I’m taking part in research in the hope that it will benefit my daughters generation – at least I’m ‘doing’ something.
So when people ask me ‘why should I sign up?’ I say to them ‘Why not? What have you got to lose?’ You have more to gain and contribute to dementia research by signing up, and in the future you may be grateful for all those volunteers – because one day it might be you, or a loved one who is faced with that diagnosis:

https://www.joindementiaresearch.nihr.ac.uk

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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.

One thought on “National launch of ‘Join Dementia Research’

  1. Wonderfull keep going Wendy, when you have time can you get your blog people to tell me how to view all comments on everything as that will generate chat and I seem unable to see anybody else’s comments

    Veronica

    Like

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