Young Onset Conference…..Part 3

And so to the final blog on the conference……….

So before lunch it was my turn ….

Always have my daughters with me on the slide behind me....
I always have my daughters with me on the slide behind me….

…..I spoke about employment and what works and what doesn’t. I ended my ramblings by saying:

“Not to have a choice shouldn’t be an option – we have rights as much as anyone else. I’m a great believer that everyone has a talent – when we’re given a diagnosis we simply have to learn to adjust those talents and even seek new ones – employers need to seek out and support us to continue to use our talents”

Then Sue and Jannine were after me – I worked with them on their project.
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They said it soon became apparent that very little is known about people with dementia in the workplace. They grounded their study around speaking to me, line managers, other staff, HR OH, train unions.

They weren’t able to speak to an existing employee living with dementia for a variety of reasons.
The picture painted isn’t a good one, but they did come across some good practice. Nice to see them again and hear how it had all gone and their plans for the future….

Libby Brown – an occupational therapist from Havering Memory service finished off our session. She focused on Bett and Tony’s story, who were in the audience.Bett has dementia and is still working.
She then played a short video where Bett spoke of why she liked to work. And the the role the healthcare professionals – namely Libby – played, providing advice and advocacy. They informed her employer about the Equality Act of 2010 on Betts behalf.
They helped Bett to come up coping strategies at work.
This talk demonstrates the post code lottery of support available…………the support Bett received enabled her to gain her confidence again and simple strategies means she’s still in her post.

Again, the continuing theme of specialist knowledge needed by professionals……….changing mindsets inside and outside the workplace is the hardest challenge…..

We had a nice lunch while the last session was going on while it was quiet. After I’d had a cuppa I finally found Pat and Mel! And we put the world to rights with a cuddle and a few photos of Neville the cat😻

The afternoon session was a workshop for people living with dementia and was being filmed.
Initially we had one huge circle
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However, Rachel redesigned us so we had an inner and outer circle – inner for people with dementia and outer for the supporters. I was so pleased to see so many people with dementia there….

We talked about the things we like to do but need support to be able to continue

One chap spoke of a dog he looks after at the weekend – the dog is part of his care package now as it’s enhanced his life! Bit like Billy the cat!

We talked about the value of social media in keeping us connected and feeling less isolated – I live alone and social media helps stop me feeling lonely because I know there’s always someone out there.

There’s a tendency to think that ‘it’s only happening to me’ – whereas here we are in a room hearing similar stories from everyone………
The best thing about this 45 minute session, so perfectly run by Rachel Niblock, was that everyone spoke – even people who hadn’t spoken before, which was sheer magic to hear. One lady who hadn’t spoken before in public simply said:

“Support is life giving”

Sums it all up perfectly really…….

A great conference ended with the long journey home but it had been worth the trip just to see so many old and new friends who are also living with dementia…..and the wonderful Botanical Gardens….

Read more about our new Network at:

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

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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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