A Trundle to Bonnie Scotland……..

Long blog sorry! But hopefully full of interest…..

On Monday I was up bright and early for a trundle north to Scotland.

Stirling University was hosting its second International Masterclass on Dementia Care, Design and Ageing (IMDDA). IMDDA brings together experts from across the globe to discuss ideas from design innovation through research to policy development and I’d been asked to speak. Stirling was a lovely place when I went last time so I thought it would be nice to see it again. It would also be a different audience – I like a new audience……….

Anyway, the day was bright and sunny and the taxi man cheerful. I’m still off my tea, which is making me very sad, so hot water would be my company on the train.😔

It’s a beautiful train journey up the East Coast but first I had a long wait once I got to Doncaster after a lovely trundle by the Humber

I sat on a bench in the full sunlight watching the world go by before the train for Edinburgh finally arrived. The second half of the journey from Newcastle to Edinburgh is my favourite. Wonderful views all along the east coast

Then into Edinburgh where I changed for the final train to Stirling……the sun still shone and it had actually become warmer by the time I got to Stirling 😳. Took me a while to find the hotel🙈 but eventually realised it was the other side of the hotel and away from town🙄. As I walked over the bridge there was a steam engine just pulling out of the station!

I dumped my stuff in the bedroom and went for a short walk…before body gave up and I spent the rest of the afternoon dozing in my room……….thankfully I’d opted out of the evening meal with fellow speakers from all over the world as I was running on empty. Still no sign of my cuppa tea taste buds returning and this was also getting me down.

The following morning a taxi was picking up all speakers at 08.20……so I trundled down to reception. The sun was shining and it was another glorious blue sky. I was soon joined by a lovely lady from Sweden, then Ireland and Japan…….

We were ushered into the waiting taxis and taken to the beautiful campus of Stirling…..I sat outside having a cuppa hot water with this as the backdrop….I’d never get any work done if I was here…….

What a glorious day to be here…..I met 2 amazing people from the Lake District Ian and his wife Sheila, who would be speaking tomorrow. Ian has dementia and we chatted for ages and found we had so much in common. A new playmate 😊

Professor Judith Phillips ( Deputy principal of research)opened the Masterclass.

Ageing and dementia research is one of the flagship areas in the University. Application of research into practice is key to making a difference. Lots of their research is on Age and eco sustainable housing and developing natural communities to aid ageing. Sooooo interesting to hear all the different types of ageing research going on….

The keynote speaker was Professor Satoko Hotta from Keio Univerity in Japan. I hadn’t realised this was the person who came up and said hello and had read my book.

She also knows Tomo, who is living with dementia and doing great work over there. He came over to this country and visited me at home.

She was talking about the centre for compassionate community and centre for dementia friendly community through co-creation – ‘Experienced based co-design’
She has direct experience through caring for her Father in law.

She showed a wonderful photo and quote from Tomo

Lots of interesting work going on in japan…..much talk of ‘supporting’ working carers and those diagnosed. The company ‘Honda’ featured largely in promoting this.
In spite of huge input she spoke of how there is still little outcome from the words of people with dementia. There is still the stigma of a diagnosis. ‘

They then took me by surprise by saying it was my turn 😳….I knew it was, but was so entranced by the Japanese talk that I forgot all about it 🙄.
I spoke of all manner of things – design, language, adapting, professional attitude……

It was then break time thankfully. As I sat with my cuppa hot water many people came and said such kind things and had selfies taken…..from all walks of life from different countries with one shared desire….😍….wonderful

After the break was Dr Donald Mascaskill, from Scottish Care, (Voice of the Independent care sector) talking about A Human Rights approach. How we should support people with dementia with their dying needs and desires. Sooooo important…He asked:

what does dignity mean in the world of dementia?”

Unless human rights have meaning in the small place like schools, work, communities, they have little meaning elsewhere.
Scotland was the first country to come up with a Charter for Dementia. But surprisingly Human Rights didn’t appear in the latest Scotlands National Dementia Strategy. Complacency sets in.
We’ve allowed citizenship to be defined by capacity……☹️

His talk was very enlightening. Wish I could have typed more.

Next up was Avril Hepner from the British Deaf Assocaition……..talking about the Transforming the Deaf Dementia Experience project. She signed and a someone spoke her words. People forget how deaf, blind, and so many others also get a diagnosis of dementia. Even in care homes, there’s often resistance to looking after deaf people with dementia. They offered free training but found reluctance in accepting it.
Deaf carers also have their own unique challenges which are currently unmet….

Their website has personal stories and many useful resources – deaf association Scotland. Photographs are a terrific way to begin a conversation. Bad experiences due to lack support came out from first meetings. Their Toolkit has just been finished and is now available to give tips and advice to support people as they travel on their deaf dementia journey. Might be the carer whose deaf and not the person, so a sign language interpreter is one basic need during diagnosis. They found the deaf community lagged behind in the knowledge of dementia due to lack of available support. For those that use sign language, English isn’t their language so booklets are useless. There is currently no assessment tailored for deaf people in Scotland, no memory assessment. You have to modify but are often told you can’t.
“Thank goodness someone is realising sign language is our first language” said one person…..

A talk full of wonderful facts…….

Finally before lunch was architect Alisdair Inch talking about dementia design in public contracts. He works in Architectural design and research for people living with dementia. They produced Trust Housing Association documents, ‘Colour and Wayfinding’, ‘Daylight Spaces’ and ‘Remodelling’. He showed their ‘colour book’, with texture and colour palettes. Options for councils to refer to…there are so many challenges of delivering research in design – industry works far quicker than academia with financial penalties for non delivery, cost restraints, a common language has to be found, timescales. Local authority delivery has even more challenges, due to low budgets, multiple levels of decision making…..so they set tight parameters yet say in the next breathe say
‘ this design MUST be dementia friendly’ 🙄😏😔

My head was banging through having to concentrate so much on so many new things, so I was quite glad I was only staying for the morning. I wouldn’t have coped with the.  Afternoon as well. It was a shame I wouldn’t hear my new playmate, Ian’s talk, the following day but after lunch I said my goodbyes and was on my way to Leicester for a Dying Mattters Conference …….but the bonus was…..I was sharing a taxi with Ian and Sheila so we promised we’d keep in touch.

A fabulous new audience for me. What made the event was the variety of speakers. So glad I made the long trip even though now I have an even longer trip to Leicester…but at least I get to pass the wonderful east coast coastline again……..😍………

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.

21 thoughts on “A Trundle to Bonnie Scotland……..

  1. This has rung so close to home for me Wendy as my ex husband, late mother-in-law and my youngest daughter are all profoundly deaf. This blog has inspired me to connect with my local Deaf community to ensure Dementia Awareness xx

    Liked by 1 person

    1. For a while now I’ve thought ‘if Wendy comes to Stirling, I hope it’s well advertised because I would love to meet her and hear her talk. I live in lovely Stirling – and missed it 🙄

      Liked by 1 person

  2. Wendy, curious as to why you are not drinking tea, can’t you drink decaf or herbal tea? I switched to decaf tea many years ago due to heart problems and never missed regular. Better than drinking hot water…my opinion.

    Liked by 1 person

      1. Hmm, didn’t know that was a symptom, would think that maybe a new, or changed med would do it. I’m a retired RN so hope that you don’t mind my being so inquisitive. 😊

        Liked by 1 person

  3. Wendy, I will be making that lovely east coast journey on Monday as I travel by train from Leeds to Fife to visit my mum. In my travel bag will be a copy of your book as a gift for her 92nd birthday!

    Liked by 1 person

  4. Hi Wendy. Thanks for telling us about your interesting day in Stirling. It’s great to know about the variety of projects working towards improving dementia care. I’m curious to know if you choose to sit with your back towards the direction of travel when you’re on the train. Your stunning pics of the Humber Bridge suggest that you do. Is that your preference, I wonder?

    Liked by 1 person

  5. Thank you Wendy, you have such a gift with words and always make interesting reading. I love following your blog and following you on Twitter. You are such an inspiration

    Like

  6. Very interesting learning about dementia issues in Japan, as well as in the deaf community. Thanks for sharing your trip to beautiful Scotland with us.

    Liked by 1 person

  7. It was our great pleasure to meet you and become your new playmates. Working my way through your book and thoroughly enjoying. Ian’s speech was well received just like yours. Please keep in touch.
    Ian and Sheila

    Liked by 1 person

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