Japanese TV Crew join us…….

Last Friday saw our monthly meeting of Minds and Voices.

NHK TV – the BBC’s equivalent in Japan – asked if they could film us for a programme they’re making on supporting people with dementia in their communities. They are making a 2 part documentary on ‘What can be done to make environments good in Japan’. They’d already seen Fiona Andrews from the Transport Police and now wanted to listen to us……….
Japanese TV crews are quite busy at the moment due to their success in the Rugby World Cup!

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Damian kindly gave me a lift and the film crew were there when we arrived – Kana Fushimi, Stuart and Andy (sound man and cameraman) accompanied her.
Also visiting today were 4 people from Leeds who are wanting to set up a similar group to ours for people with dementia. Seva, who has dementia and his wife Hardeep came with one person from the council and another..They want to create a group and be part of the DEEP Network.
You can find out more about ours – Minds and Voices at:
http://dementiavoices.org.uk/group/minds-and-voices-york/

and can check if you have one in your area by going to:

http://dementiavoices.org.uk/deep-groups-alphabetical-order/

I soon realised I’d forgotten one vital piece of equipment…….my ipad………😱…..back to the trusty pen and paper to make my notes……and no photos possible!

They were filming as people entered the room which confused some people as they’d forgotten they were going to be there………….😳…….Once we were all settled with a cuppa we went round the room. We were wanting to explain why the group was so important to us for the benefit of the people from Leeds. Everyone was still on a high from our 2 day visit to London to celebrate the final stages of Dementia without Walls.
Eddy said:

“We learn so much from each other” and “I feel I’ve now got a bigger family through meeting people with dementia”

Elaine – who gave her first ever speech in front of people in London said:

“I’ve got far more confidence now since meeting people with dementia”

We started talking about iPads and smart phones and Rita said she felt left out because she doesn’t understand any of it. So I suggested we included basic lessons for those that want to understand more.

Seva, from Leeds, spoke about his experience when he was diagnosed…….I found it quite shocking that his doctor

‘didn’t have time to explain the meaning of dementia”,

so here he was, having just had a diagnosis, and having to go home and look it up in the dictionary…….that just shouldn’t be allowed……
He has a Phd from Leeds University – so here was a man who was capable of ‘finding out’ the meaning but what about all those who aren’t as educated?
His wife Hardeep was very quiet until she joined in the conversation near the end:
“Share your stories. Dementia is now on the public agenda”
They were a lovely couple – I hope they create their group as many more would benefit.

Damian asked “What constitutes a Good Life”
Various replies came back – but basically:

“Good Life is people realising that life doesn’t stop with a diagnosis of dementia – life can still be enjoyed and even now we never stop learning”

Once everyone had gone the film crew interviewed Eddy, then me and finally Damian. Kana, the interviewer said she hadn’t expected the group to be so animated and vocal…..(!) The people in Japan had expected her to come and find tangible examples within the community but we were saying that often it’s ‘attitudes and behaviour’ which make all the difference. I’d always been under the impression that Japan was ahead of the game but apparently they still have the attitude that the person with dementia should be hidden away….how sad……

It was a very different forum today but still very enjoyable………..

The brand new ‘Dementia without walls’ web site was launched this week and can be found at:
http://dementiawithoutwalls.org.uk/

Agnes from Scotland and Elaine from York are the cover girls……:) and a fabulous photo it is…not the usual photo that you see in the press when they’re talking about dementia…….

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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.

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