A National Workshop for Technology Projects in Dementia Care – Part 1

On Friday I attended the CAREGIVERSPRO-MMD: A National Workshop for Technology Projects in Dementia Care in Hull.

I’d been asked months ago to speak at the event organised by Rosie Dunn, a Postdoctoral Research Assistant from the University of Hull. I’d been helping Rosie with the new Caregiverspro project in giving my opinion on the web tool they’re designing.

The web site describes it as:
“CAREGIVERSPRO-MMD is a European Horizon 2020 funded research project with the full title:
“Self-management interventions and mutual assistance community services, helping patients with dementia and caregivers, connect with others for evaluation, support and inspiration to improve the care experience.”
Academics from the School of Engineering and the School of Psychological Health and Wellbeing are working with six European partners to develop a tablet-computer based social networking system for people living with dementia in the community and their care givers.”

Amazingly, the chosen UK area for the project is Hull, This region often feels like the end of the world and a forgotten land but not this time! 😁 Catalunya in Spain and Ancona in Italy are the other areas.
Gemma came with me to this one, so we were able to drive – that being the ‘Royal we’ of course.. It was a very cold frosty morning and I managed to get a very different view of the Humber Bridge from the car…

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We arrived at the venue with time to spare – the advantage of a local venue – and once we got inside we were met by Rosie and Professor Esme and of course, first priority was to get a cuppa tea ….or two……..or maybe even 3 as they were cups not mugs…….😊

We went inside the room to then meet an adorable baby, which was a surprise! It’s not every baby that has her first conference under her belt…….Mum, Dr Emma Wolverson is the Principal Investigator on this project and said hello as did other people who looked familiar but names escape me.
We then came across of the wonderful smiley team from Willerby so I couldn’t resist a photo opportunity……

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There was some interesting speakers on the programme, so we were looking forward to the day

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It was a nicely set up room with lots of round tables and felt very informal.

Prof Esme opened the day and was Chair for the first session.

The first speakers were Dr Kevin Paulson and Dr Emma Wolverson. The aim of the day  was to launch the Caregivers UK Pilot. It’s a social networking platform which empowers people with dementia and their supporters to live with a higher quality of life.

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We need our quality of life improved while we wait for that elusive cure. The resource required to the health service can only increase so to empower us to improve our own lives can only serve to benefit the NHS.
2/3rds of care costs are carried by families themselves so anything we can do to improve our lives is a no brainer to me.

Emma spoke of the gap once diagnosed where people are left to flounder and often sink – one gap I know particularly well.

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Keith spoke of the next generation where technology is already familiar and these will be the ones able to continue with that during their possible life living with dementia later in life.
I’d just like to add here, that technology has come into my life post dementia, so we mustn’t forget that age doesn’t have to be a barrier to those older people who are now living with dementia.

It was my turn then and I spoke of ‘Why and How I use Technology’ – I spoke of how technology has been a growth area for me post dementia. And since there were local stakeholders in the room I took my chance to promote #handouthope. I said:

“All it would take is for clinicians to back and actively promote engagement in research –GPs District nurses, OTs, physios, any healthcare professional, to hand out hope in the form of a Join Dementia Research leaflet”
After all, handing out a leaflet doesn’t cost that service anything and will give the person a chance to be involved.

Next up was Dr Franka Meiland from Amsterdam (INTERDEM Technology Task force Lead)
She spoke of Health Technology in dementia Care.
She spoke of how E-Health technology can help people with dementia to support and manage and enhance our lives.

She stressed the importance to include people with dementia at difference stages of the research – development, evaluation etc – must be true involvement though……

One question asked was around driverless cars – another interesting theme……will driverless cars mean I’ll be able to ‘drive’ again…..?😳

Before the break it was Professor Myra Vernooij-Dassen from the Netherlands. ‘How can technology promote social health’?
‘Technology is a connection with normal life’

She spoke of her own parents living at home until the end and the most important addition was the double stair rail and bizarely I’ve just had an extra one fitted on my stairs after a visit from the OT! So now I have one on each side of the stairs and it’s amazing how much easier to walk up and down stairs now….😊- would recommend to anyone to do the same😊

She spoke of barriers put in place by people with dementia.

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The fear of failing and denial of the problem and the actual stigma of dementia itself.
If the image of technology is it’s for ‘older’ people or people with dementia, then people may not engage with the product. If the medium is the message they will be reluctant to engage.
That would be how I would look at them – I would use an iphone, I wouldn’t use a phone specially made for ‘the elderly’, for example.

Myra stressed that to collaborate with people with dementia, you will be much more likely to create something useful and that works – which is obviously a given for me…….

Technology preserves dignity and allows reciprocity – important as then you’re  not being perceived as a burden to others and are still feeling useful.

Cuppa tea time!! A good place to end the first part……..

Part 2 tomorrow…..

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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