Final Day of UK Dementia Congress………

Before I start the final day’s blog, ………..

Last month was my dads 100th birthday, if he’d still been alive and today Nov 7th, would have been Mums 100th birthday too………so happy birthday mum……..

We met for breakfast and I was filled in with the raucous singing and shennanogens from the night before……..😂

We then went out in the pouring rain and went over to the Racecourse with Philly……suitcases armed and ready for the journey home later in the afternoon…….

Me Ron and Howard sat with Philly discussing our session at 09.10 on Dementia Enquirers….we were up second after the EDUCATE Deep group………

Making our way up to the second floor we found Buz and Steve Clifford from EDUCATE waiting for their bit to start. Our session was called ‘Reframing Narratives…….’

Buz and playmate Steve started off

They were talking about people being actively involved at delivering training to professionals…..EDUCATE wanted to future proof their inclusion as dementia takes hold by making snapshot videos ….the course has been produced and delivered and put into an interactive training day…..

People with dementia are the best people to teach professionals about what our needs are…” said Steve

When Steve saw an Orthopaedic Consultant his wife asked if it could be anything to do with his dementia and he said….

No, dementia is all about memory”…….so we’ve a long way to go to educate professionals…..🙈

We are the professionals in dementia.” Said Steve

Video clips are embedded into the course throughout the interactive day for those being trained….each clip shows an issue made by people with dementia with that particular issue and then staff are asked to come up with solutions in their work area. We showed Jo having difficulties putting on a cardigan, and then learners had to discuss ways they could help…learners are asked to think about how they would feel if they had these problems…..

They asked the professionals, “How would you feel if a stranger came into your house and moved things around?”…..people with dementia spoke about the kindness of people that has the total opposite effect….’Tidying up” can be a nightmare for us…….

Every person with dementia still has abilities and strengths “

“There’s always something you can laugh at…”

The course aims to challenge the myths surrounding dementia……and Steve finished off by saying :

I’d like you to see…………just me…”

Next up was us….talking about people with dementia being in the driving seat of research…..

Philly started off by telling the audience about the funding, about the fact that we’re looking at the ethics process, the language used in the academic world and the learning of new skills along the way…….

The first question she asked me Howard and Ron  was “How do we feel being part of the pioneers?”

I said……”It feels like we’re at the beginning of something great……we’re not naïve enough to think we can do it alone without professionals help, but academics will be invited through our door and asked questions on our terms, work with us on our research questions. We can challenge ethics , we can challenge academic language….”

The final question was “What does it mean to us for people with dementia to be in the driving seat……”

I said how it shows ”the CAN instead of CAN’t when you have dementia……It will question current perceptions about our abilities…..”

Ron said “The days of us being the guinea pig are over..”

Final presentation was by David Truswell on supporting people living with dementia from black Asian and minority ethnic communities…….

It was centred around his book which concentrates on Iris, Afro Caribbean’s south Asian, Chinese and Jewish and has chapters by people from those communities…..

The experiences may be similar but their cultural experience within their own culture may be different and require a different approach….dementia is often within mental health services and many of these cultures have a fear of being shut out from their community if it’s known they have dementia….people can revert back to their mother tongue or a combination of both which, as you can imagine can cause huge difficulties…….

Services have short comings – they believe families will ‘look after their own’, staff will be unfamiliar with an interpreter, staff may be unfamiliar working with a family rather than just an individual, lack of information on community resources, little known of the mix of traditional medicine and pharmacology…….

I asked David, Were people willing to talk to him? – his response was just what I wanted….that people are always willing to talk and he is frustrated when researchers say people are ‘difficult to reach’…..

Their website to know more is www.demace.com Along with videos……

It all went really well…….

We made our way back down to the stand where I sold the last of my books and Dory was doing a roaring trade on giving our leaflets out along with Agnes’s Talking Sense booklet which can be downloaded free here….

https://www.hammond.com.au/images/Talking-sense.pdf

We were all coming to life as people came to chat at the stand but then as soon as we were alone we were jaded flowers……..it had been such a long couple of days, but just one more session to attend after lunch with Damian and Howard on our Good Life with dementia course………..

Murna was the chairing  the last session of the day and Howard and Damian were going first due to our train times….

Howard said being diagnosed “felt like falling off the edge of a cliff”….we shouldn’t be fed doom and gloom ……. Servicing are not providing what we need…..our Good Life with dementia course aims to provide hope…

We then watched the 5 minute film all about our course, designed and delivered by people living with dementia….where playmate Stuart said, “it’s not the end, there’s still a life ahead….’

Learners on one course could be the tutors of the next”

Lovely to see my playmates on the video…..a great way to end Congress………

My quote of the day has to be from Aimee…….who says this after temporarily falling asleep………..

My eyes are having a ‘long blink’…….” Must remember that one……😂

 


Thank you to all our ‘able enablers’ for making this a stress free and fun time…….just Steve Milton and Rachael Litherland missing! Without you organising me, I wouldn’t feel safe doing all I do…..

And to all the people who came up to our stall to chat……..

 

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.

5 thoughts on “Final Day of UK Dementia Congress………

  1. Wendy you give such wonderful descriptions that I feel as if I am there!
    You show just how important the people around you are and whenever I am with people living with dementia I always remember your comment about how a smiley face can provide reassurance and comfort. Thankyou for providing such an insight.
    I also get a real feeling of the importance of community when you meet with your “playmates’ and ‘enablers’. You are all remarkable people!

    Liked by 1 person

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