Young Dementia Network Steering group

Last Thursday saw me trundling down to London to meet all my playmates in the Young Dementia Network Steering Group.

Prior to the main event there was a meeting of the research strand with Professor Jan from Bradford.

I made the mistake of not booking the straight through train from Hull for some reason😳 and ended up on the slow train to Doncaster, where I’d get the train down to London – not sure how that happened – must have been to do with cost I imagine.
Anyway, the taxi was late so when I got to Beverley, there was a train just leaving for Hull, and I automatically jumped staggered onto it……..instead of waiting for my train for Doncaster 🙄……..just got confused to the unusual route I was taking me thinks. However, all trains stop at Hull so I was able to get off and wait for the train I was meant to get, only to see the direct London train merrily waiting on the platform🤔 – should have booked that one! Best laid plans……..

it’s always nice to see the early morning sun …..and this time I had a different view as we trundled towards Doncaster……

img_4067

Once we got to Doncaster, my journey was back on track and needless to say, they were running late………

I finally got there to find I was late for the research meeting but Sarah kindly got me a nice cuppa as a priority😊
We spoke of sooo much but also ideas around how we could promote research for Young onset – maybe an idea of a research conference specifically for Young onset. Very exciting ideas ………

It was then lunchtime and everyone else started to arrive. Once we all got topped up with a cuppa, we started the main meeting.

I started off by taking photos……as I do…..

img_4071

Then Tessa started off the meeting. We started off by hearing from Sarah about the successes so far – which are numerous……

Tess spoke next of National influencing opportunities – we just hope post Brexit, that those who can influence will come on board and can be influenced around Young onset.

There was much discussion around the ‘I’ Statements which are under review…….and that Young onset needs to be represented…

There was the ongoing debate about prevalence figures. Most targets are for over 65’s and we need far more information at a local level about under 65s…..

Internationally Holland are very active with Young Onset, so maybe we need to look at their model……

There’s a huge drive from the Japanese government to keep people with young onset in work due to the economic advantage – our companies could learn an awful from them……Tamo, who I meant recently had a very supportive company..

Sarah gave us an update on the newly launched Young dementia network – since it was launched 2 months ago over 400 people have joined. 70% professional, 20 carers 10 pwd
From all over the country.
We spoke of how to creatively promote the network – I said ask ITV to put it on their web site during December during the Emmerdale story.
And I said about getting leaflets into libraries and random waiting rooms.

img_4073

There’s massive potential for the web site. We hope to develop an online practical advice section with real stories, not only from people with dementia, supporters and children of people with dementia.

We hope to link our members through events, webinars etc.

We had updates from all the workstreams, which are doing amazing work, including Jan who updated everyone on our meeting prior to the main event on research.
We’re putting together a research database on Young onset.
We hooked onto what we’ve called “Tessa’s natty idea” – a one page of how to find out about the latest YOD research – magic. Another sheet for those who have joined the network of Why do researchers need you? I said, when people know why, they often are more willing.
We also had a very good idea for a conference with a research twist.
Jan made us aware of ‘Google scholar’ which was my learning for the day as I’d never heard of it!

Alzheimers society have funded the Angela project – it’s named after a woman who waited ages for diagnosis. Goals – improving diagnostic accuracy and improving post diagnostic services. Starts Dec 1st. Across 4 sites.

Tea break!

img_4072

Documentary producer from Little Gem came to speak to us as SKY are making a programme over 5 years on various things that affect a family – and are looking at the possibility around whether dementia is a possibility and looking for us for advice. It will be on air 2021 and the outcome will be a 90 minute programme….
Keith kicked off by saying that h e and Jan had been on the advisory board for Dementiaville.
They set up an advisory board to the TV people to comment and asked their views.Not fly on the wall – 15-20 days per year – director would be in touch to find out what’s happening.

It’s vital the creative people have an advisory group. There was many diverse views on the ethics and advantages, disadvantages………a very difficult decision with many pros and cons…..
Feedback from the conference was good to excellent. 230 people present – Kate updated us on the film we made – individual pieces to camera by about 8 of us with dementia will be edited down to 6 minute film – by Christmas we’ll have a 6 minute long film around support and Young Onset Dementia.

I missed out lots as my brain tends to diminish after 2 and I was very tired….but it had been a very good meeting and finally, as we speeded towards 4.30……..Tess ended by giving us a summary ……..

‘we’ve done a lot but there’s a lot more to do’ –

we certainly have and there certainly is……..

More can be found on our website

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

 

Advertisements

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.

2 thoughts on “Young Dementia Network Steering group

  1. Sounds very exciting and glad to hear us younger ones are being thought about.

    With regard to your trains – if I’d seen that london train there I’d have gotten on it anyway. You had a ticket and if there had been any issue I’m sure the conductor wouldn’t have had a problem with it.

    PS: I’m one of the 10 pwd’s in the network!

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s