Young Onset Dementia Network Meeting….

Yesterday, I was back down in London for the Young Onset Dementia Steering Group…..I wish I had a speeded up film of my travel this month as I’m sure it would make for hilarious viewing….

I woke up to an amazing red glow out of my back window…

There are many individual projects going on within the steering group and I’m part of the Research Strand led by Jan Oyebode from Bradford Uni. Our meeting was before the main one which allowed me to travel with my favourite train company – Hull trains – they’ve always been helpful and you have free wifi for the whole journey plus they also serve Yorkshire Tea so they’ve got a head start of the others….😊☕️

The venue, the Esmée Fairbairn perfect and within walking distance from Kings Cross.
I arrived to find Jan, Janet, Mary and Sarah already there. Sarah did ask the very strange question…….

‘Is everyone ok with water or would anyone like a cuppa’😳

As I say, strange question, but once my cuppa tea was in situe we began😂
We were saying how its so difficult for people with young onset to find all the research that’s happening. Not all researchers, of all types, promote on Join dementia research. It would be sooo useful if there was just one place like JDR…….

We hope to have a list of top 10 papers for each area of Young onset to go on the web site.

Any researchers who want to advertise their research and need for participants can contact the Network to advertise on the site.
Lots of interesting facts shared….

After a lovely lunch the room had filled totally and I couldn’t get everyone in one photo!

Tessa chaired the meeting and asked everyone to introduce themselves

New people were Laura Phipps from Alzheimers research UK, Jayne and Chris Roberts.
We also had Jeremy Hughes CEO and Gavin from Alzheimers society.

Laura filled us in on the wonderful media work that Alzheimers Research UK does – I remember they had a wonderful innovative animation out at Christmas………they’re very creative in the things they do.Very modern and up to date.

Around the room were many professionals from many arenas. We all have a common purpose – to improve the lives of people with Young onset.

Sarah gave an overview of all the good stuff we’ve achieved since November when we last met.

Tessa moved onto how to influence nationally. How each of us can offer a young onset perspective to all the variety of groups we belong to.
The ‘I’ Statement meeting were mentioned that Chris, Jayne and I were involved in on Monday.
Rachael Litherland from Innovations was sat next to me – havn’t seen Rachael for ages – since her baby was born, so it was lovely to see her again!
She gave an update on the Welsh Strategy. Welsh government have been very open to discussion.Lots of the work around their strategy is Rights based.

Sarah then went onto talking about her work with the DAA and seldom heard groups, of which young onset is one of many. Always making sure Young Onset dementia is mentioned in every arena is key. .
Janet talked about her visit to Japan. Emphasis there is on social care. There’s a huge focus on vocational rehabilitation from the Japanese government and they met Tomo who came to my house!!

Jeremy and Gavin from Alzheimers society were next. They were here to tell us what the society intend to do for people with Young Onset
What was learnt from the work done by Adrian when he was in post and who is sadly missed.
Everything Jeremy said was really promising and an ideal in theory, especially around linking their services with the NHS and being able to make Gp appointments but I need to be convinced of the ever present problem of consistency.The fact that many Gp surgeries having many different IT systems is a mammoth task to overcome.

Jeremy is very eloquent and passionate about the organisation but there’s this niggling doubt about the ability of some local offices to deliver the same message and this is where the majority of the work lies. Jayne also made the point about the already present difficulty in recruiting appropriate volunteers as well.
There’s so much needed to be done with education in the local offices around Young onset and so many changes needed. However I do applaud their ambition.
The objectives are huge, as they should be. Achievable? Time will tell…….

My brain started to go on a go slow and tea was needed……..but even tea didn’t do the trick… my notes are somewhat sketchy after 3pm…….

570 people have joined the Young dementia network since we started it, which is brilliant, and the web site is being updated and added to all the time so worth revisiting. Here’s the link:

The final session was an update from each work stream. I can’t believe the amount we’re doing and have done in such a short time. So huge congratulations to everyone especially Young Dementia UK for all their massive work.
I wasn’t looking forward to the journey home as I would have half my journey in the dark😱 which I really don’t like any more. I can’t see out of the window so never feel settled as I’m continually wondering where I am…..
When I got back to Kings Cross there was all the news everywhere about the shooting in Westminster which was very sad. But my train was on time so I was homeward bound……

Photo of the lovely ceiling at Kings cross because I know I won’t be able to take photos on the way home…..😔

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.

4 thoughts on “Young Onset Dementia Network Meeting….

  1. Great reading Wendy, so interesting to hear all the news about young onset dementia. Well done you doing all that travelling and some of it in the dark- I know how you feel, I hate that too.
    Glad you are okay after hearing the terrible news from London, I feel so sad for all the families that have lost their loved ones. Good to know that there are wonderful people in the world, like you Wendy, who sacrifice so much to do good for others. You are amazing. Viv

    Liked by 1 person

  2. Great to hear as always the work you are doing to help others Wendy. I don’t know how you pack so much in during the week as you always seem to be on a train going to all parts of the country.

    Good idea of yours for researchers to advertise their work on just one website like the Join Dementia Research as there are so many interesting and useful research projects going on it is hard to keep apace and could be useful to better co-ordinate and share ideas.

    All the best once again Wendy and look forward to hearing where you are you next.
    Martin x

    Liked by 1 person

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