National Young Onset Steering Group Meeting – Part 2

Following from yesterdays blog, here’s the final one about my first meeting as a member of the National Young Onset Steering Group.

I soon realised that I’d misunderstood the purpose of the group. I had it in my mind that they were developing a support network for people with young onset. I’d concentrated on the word ‘network’ instead of ‘steering group’. Nada Savitch was at the meeting and soon put me right. Now I understand 😊

A diagnosis in someone under 65 has a different impact than that of later life and which is not currently catered for routinely in services nationwide. The aim of the group is to influence change through influencing policies and improve services nationally. The Steering group is just the start of the network.

A national development manager for Young Dementia UK will start in post in January 2016. Esme Fairburn and Henry Smith charities have funded the post – the successful applicant was Sarah Plummer so look forward to meeting her in due course.
A major part of their role will be to support the steering group. They will also connect with diagnostic clinics “so that people with young onset find out quickly about the network and know they can belong to a supportive community within the UK.” Those diagnosed who want to influence changes in their local area or nationally will then have access to a network of people who can support them in doing this.

There’s plans afoot for a Young Onset dementia conference in late September 2016 which is promising. We need to make sure people with dementia can attend – so fundraising needs to happen to enable that – or maybe sponsorship can be found – otherwise its an empty invite.

I met old friends and new. Keith Oliver and his wife Rosemary were there. I was pleased to finally meet Tessa Gutteridge who led the session. She is the wonderful person who is the Director of Young Dementia UK along with the equally wonderful Kate Fallows from the same charity. Their enthusiasm should be bottled.

Keith, Rosemary and Tessa
Keith, Rosemary and Tessa

Those present were round the table were Keith, Rosemary, Tessa, Nada, Aisha, Janet, Peter, Reinhard Guss, Hilda Hayo (CEO of Dementia UK), Karim, Professor Jan Oyebode , Mark from Journal of dementia Care, Gill Walton (UCL) , Kate Fallows, Adrian Bradley (Alzheimer Society). Alisha, Janet and Karim were new to me so hopefully I’ll get to know them better as time goes on but all seem very influential and enthusiastic members of the team.


Because I’ve come in a year down the line, I havn’t got my head around the set up yet, but there appears to have been work streams set up and people from each work stream gave an update. Four people gave updates so I imagine there might be 4 work streams. Janet, Jan, Gill and Adrian all gave updates.
Much of the update went over my head on this occasion but a few things struck me:
I think it was Janet that said:

‘Pooling resources and not letting logo get in the way of progress”

This has never seemed like rocket science to me and individuals are always keen to work together but organisations are always reluctant to fly under a neutral banner. It all falls down to money – everyone is chasing the same funding. If groups of collaborating people from many disciplines called the shots when tenders were being submitted, it would do away with all this fighting over funding as groups would be pooling their resources to gain the best possible services. At present, sadly, the Alzheimers society is guilty of this but it would be seen in a better light if it collaborated instead of trying to go its own way with services.
What also became apparent from Janet, Gill and Jan is that we need people from each individual specialty to help us with language. For example, we need a Gp to tell us how to talk to Gps. Our influencing will have to be based on coming up with solutions that focus around finance. For example, the CCGs (Clinical Commissioning Groups) will ask ‘What’s in it for us?” and we have to have facts and figures on why our plans will save money. That way we’re more likely to get people to listen and act.
Those that educated health care professionals are also our target. We need to ask if dementia is covered and more over is Young Onset dementia covered. Gps are our biggest challenge yet the ones who could influence most in my opinion. We have to find a way of getting GPs interested.

Adrian gave a really good summary of his first 6 months with the Alzheimers Society. Both Keith and I said how the society is realising the benefit that people with Young Onset can give the society. We’re still able to articulate and promote so not to give us a voice and involve us more would be detrimental. We know, more than anyone, what services should look like for our future. Whilst it shouldn’t be forgotten that people in the late stages are still able to communicate, if not verbally, then in other ways, we can state categorically what we want services to look like for our future.
The society really needs to focus more attention on Young onset and age appropriate services. The appointment of Adrian into post shows their commitment though. As long as his post doesn’t disappear, we’ll be assured that it wasn’t a tokenistic appointment, which I don’t think it is.

Tessa that told us about a communications company that have selected dementia as an area of interest. . They’re interested Young Dementia UK – they’d like to set up a hackathon (had to look up the meaning of that one!) They want to organise an intensive 2 day session where all their ideas people meet with people we select asking for example, ‘what are the challenges communicating with GPs/neurology clinics’. It sounds a great idea but Tessa will find out more and will also find out ‘what’s in it for them’!

How can you use policy to influence? – one key is trying to increase profile of YOD to healthcare professionals – it might lead to how services can be redesigned. Influence key policy documents – NICE guidelines and MSNAP- will then influence policy makers.

Professor Jan gave an update on the research work stream. They’re aim is not to conduct research but rather to:
‘Having an overview for priority areas for research or encourage research interest in those areas.”

What became apparent from these updates is the very high mountain to climb, but we appear to have set up base camp, got a great team together and have started the climb……getting to the top may take a little longer, but small chunks and small changes are beginning to happen………’actions, not words’ is all I ask……


About wendy7713

On the 31st July 2014 I was diagnosed with Young Onset Dementia. 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 “National Young Onset Steering Group Meeting – Part 2

  1. Thanks for the open access to your blog – I am following it regularly.

    Please can someone tell me what age you have to be to be described as having ” young unset” dementia. I feel pretty young compared with 75, 80, 85 year olds, but would like to know if my dementia is classified as “young onset dementia”. I am now 69, rapidly approaching 70 and was diagnosed in Feb 2014.
    Some kind of appropriate local support group would be great, but it would need to be one with which I felt comfortable. It may be that I am failing to find a local one partly because I live on the edge of local areas (councils/health authorities etc) – if that makes sense. Any suggestions/thoughts would be great!

    With thanks
    Mally Ross


    1. Hello Mally
      Dementia is classed as ‘young onset’ when it affects people of working age, usually between 30 and 65 years old. But it’s simply a name tag. What defines us all as individuals is the fact that we all have different needs due to our own circumstances. So I wouldn’t worry too much about the name.
      Services are sadly inconsistent and that’s what we’re trying to change. What sort of support are you hoping for? Do you have local support at the moment ? It’s people like us speaking out about the lack of services that will hopefully change things for the better

      Wishing you well



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