Why are we so often the afterthought….?

I’ve often had this sentence pass through my brain as I’m contacted to speak at events, but this thought now rears its ugly head far too frequently.

It makes me sad that you so often read how ‘expert’ speakers will address the audience at conferences, yet none on the list are people with dementia. Surely we are the most expert in that field, best placed to talk about issues which we experience on a daily basis?

Many of us were regarded as ‘experts’ in our former life so why are we suddenly seen as something less simply because we have dementia?

Last week the agenda for Govconnect “Dementia 2020” conference appeared on Twitter – speakers were announced…….
“This conference will examine progress to date and dissect the aspirations contained within the 2020 Dementia Strategy”
Why then were no speakers announced with dementia?
Dr Shibley and Australia’s Kate Swaffer started the discussion on facebook and it was at this point that Chris Roberts joined in saying he’d now been asked. My comment was that It was a shame Chris’s name hadnt been mentioned on the agenda with all the other experts…..and why had he’d been asked after  the programme had been published?

The programme asked:

“Where can the biggest improvements be made within Dementia?”

They gave 3 options – Diagnosis? Research? Care?

There should have been a 4th option –

‘Listening and allowing the voice of people with dementia to be heard”

We don’t want rewards; we don’t want accolades for speaking – we simply want our expert voice heard alongside  the professional expert………our reward is when we impact an individuals in a small way which makes a difference to that person’s life….

Come on conference organisers……..why not buck the trend and book people with dementia before the ‘high profile’ speakers for a change….I’m not saying we’re better than the professionals, but we have a unique view which should be sought and valued.

and maybe speakers, before agreeing to speak, could ask whether they’ve included people with dementia………?

I’m glad to say that the ‘Dementia Congress’ in Telford in November booked many of us before the agenda was released………..




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.

4 thoughts on “Why are we so often the afterthought….?

    1. It’s always worth checking whether there are free places for people living with dementia as some conferences offer these although certainly not all Helen. I couldn’t afford to attend unless I was speaking.


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