Young Onset Conference…..Part 2

Soooo, to follow on from yesterday’s blog, here’s a continuation of the conference. If you remember we’d just heard from Keith Oliver, but before I continue, here’s another photo of the lovely garden…….

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Janet Carter was after Keith and spoke about her involvement with the Young Dementia Network which is being launched at the conference. She asked what do we know about data and services for those with Young Onset Dementia…?
“There’s a lot of information we don’t have” she said, as data is flawed as most data doesn’t record those living with dementia under 65.

“There’s a gap in professional knowledge around YOD” – a recurring theme throughout the conference……

There are lots of unmet needs for YOD. Individual falls between the gaps in services as services don’t talk to one another…..
A Care pathway should be a blue print for what people should expect…..it should involve people with dementia at the heart of its design.

Janet spoke of Specialist clinicians being key in for us and also key workers but they must have specialist knowledge, skills and experience.
At the centre of the pathway should be the younger person with dementia.

GPs should be more knowledgeable on YOD. The knowledge of GPs is a massive challenge – one way may be giving them information of the red flags they use to refer those with possible YOD.

We need to work hard to increase the knowledge of key professionals and persuade commissioners to commission services.

CUPPA TEA TIME! 😊

After tea it was time for Adrian Bradley , National Lead for Young Onset Dementia for the Alzheimers  society, to bring us up to date on where the society is on YOD.

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There’s a theme appearing here as Adrian also mentioned the lack of understanding knowledge and skills among professionals………..
“Constantly having to prove our diagnosis time and time again”………..is something we’ve all said…….
Many areas are still underestimating local prevalence – another common theme…..

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The return on investments for intervention for younger people will be economically beneficial to commissioners …….
Much of what we said was around the frustration we feel at the lack of acknowledgement and expertise available for us but Adrian also shared some reasons to be cheerful

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However we were soon down in the dumps again as Adrian shocked us all by saying his contract will not be renewed… what is the Alzeimer’s society thinking of…..? I thought they were committed to Young onset dementia?

On hearing this news, I was so sad. Dementia has stripped me of the ability to feel anger otherwise I would have been fuming. Instead I simply feel sad and distressed at their decision.

Over the 2 years Adrian has been in post he has ‘started’ the process; he has made the contacts and has the knowledge to take forward the valuable information he’s gained. This should now be the start of the next phase as little has been achieved yet. If the society provided support in every area for those with YOD, then maybe he would have achieved one goal, but sadly this isn’t the case. The news made me very sad and confused………. Adrian has just begun his work – not finished………..
His last slide was Kitchener……however, we need him too……and I was far from alone in my thinking……I only hope the Society is listening to our concerns……or that it’s simply a misunderstanding……?

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final part tomorrow……..

Ooooo and here’s a link to the great new web page which tell you all about the new Network….

https://www.youngdementiauk.org/young-dementia-network

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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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