National Young Onset Steering Group

Yesterday I was back in London for the relatively new National Young Onset Steering Group. Our aim is to influence, educate and promote the issues faced by those with young onset dementia as we have very different needs and issues that are not currently being supported consistently around the country. There are small pockets of good practice but these are few and far between, as I’ve discovered in my own area that there are no services or support – we don’t exist……

I don’t like going down to London any more so I’m very selective on the meetings or events I attend now.
The Steering group has several strands and I’ve just joined the Research strand with Jan Oyebode from Bradford And several others. Our small but perfectly formed group met for the hour before the start of the main meeting. Jan was saying how there isn’t much researched or published on everyday living and every day life with dementia.
We’ll be coming up with a list of studies published, in progress and the subject of enquiries made regarding any research on Young onset dementia. The priority is looking to make sure that YOD is on the research agenda as there are huge gaps in research.
Adrian Bradley, Hilda Hayo, Janet Carter and Sarah Plummer made up the rest of the group.

We had a bonus this meeting as Kate Swaffer made time in her busy schedule while she’s in the country to come and talk to the group about the work of Dementia Action International.
We’ve come along way but we’ve a long way to go. DAI is exclusively for people with dementia. We had 300 new members last month which shows the increase awareness across the world.

Kate is on the World Dementia Council with Hilary Doxford and was recognised in her native Australia having recently been awarded recognition in the countries disABILITY awards.

It was really nice to see Kate again


Keith asked what we thought about a comment made to him about the fact that we are younger people with dementia – how representative are we of the majority of people with dementia?

My own thoughts on this are that we have the advantage that we can still articulate issues that concern people with dementia and describe our own experience in the early stages. Our disease will undoubtedly progress; we won’t get better, so we should still articulate our experience while we can as we’re speaking up for those that can no longer speak up for themselves. Chris Roberts Panorama programme showed this perfectly. He could no longer do many things yet he is still very articulate.

After lunch we talked about what we’d achieved so far in the short time we’ve been meeting.
Members gave updates on the workstreams and my brain went to sleep ……..What I did note down was Janet saying the telling words:

“under recognition means the underinvestment”

There’s a lack of recognition about Young Onset so little money is being spent on providing services……..

As Keith pointed out, Dementia is the most feared condition in over 40, so it must be made a higher priority.

The rest of the afternoon was talking about our branding and our first ever conference on the 27th September in Birmingham.
More details can be found here:,young-onset-dementia-conference-2016_65.htm

Me, Keith and Kate couldn’t resist this photo opportunity before Kate left…..


I’d also agreed to meet Natalie Price today who is developing a product called Proximity which alerts those supporting someone with dementia when their loved one goes walkabout. it’s a Button sensor worn by the person with dementia. This then sends alerts to the supporters phone if the person wearing it goes walkabout outside specific parameters..but I’ll probably write another blog about that once I see how it works. The reason why I agreed to look at it is it’s simplicity. The person with dementia doesn’t need to do anything. If someone went out of the front door at night it would sound an alarm on the loved ones phone and hopefully prevent them going to far. It sounds a great idea in theory but I need to see how it works in practice.
More can be found on the website

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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