Following on from yesterdays blog here’ the final part to Fridays conference……
So after a much needed cuppa it was the turn of the CAEGIVERSPRO –MMD- project to be showcased. It was started by Ulises Cortes from Spain
The social network side of the project will have a area where people can ask questions in the hope that others in a similar situation will respond.
They need 1200 individuals – 600 pairs. They will give people tablets and training on how to use the tablet – they won’t assume previous knowledge.
It will be run for 18 months with 6 monthly visits by researchers.
They’re hoping that involvement by professionals in the future will lead to reduced hospitalisation or admission to care home as we will live independently for longer periods.
In this local area we hope to get 100 pairs of people. It’s for people with mild to moderate cognitive problems and with mild moderate diagnosis of dementia. So it’s a flexible approach to recruitment.
Next was a roundtable discussion. I’m really hoping that the slides they showed of the system are old slides as there were obvious changes that should have been made after involving people with dementia, including myself. Otherwise it will have been token inclusion which I’m really hoping it wasn’t.
We were given 5 questions to discuss:
We spoke of not taking the easy option to recruit – getting the word out there through Join dementia research and healthcare professionals but also being creative in the groups and people that are approached..Language is everything, as simply using the word technology would put something off. It needs to want to make people pick it up and use it.
It seemed such a shame that we didn’t have more time on this bit as all the tables were very animated and it seemed like a missed opportunity for the project team to hear the ideas from the room.
After a lovely hot lunch on such a cold day, it was time for Professor Gail from Bradford who spoke about the ‘Journeying through dementia’ project – I’m on the Steering group with Gail, who is the Chief Investigator.
It’s a community based self management intervention for people aged 65 and over. How can we limit ‘excess disability’ – deskilling can be rapid in people with dementia if they don’t continue to ‘do’ and carry on in life.
Well, I can really relate to that. I took 3 weeks off doing all the things I do over Christmas, thinking that would be a nice rest…….wrong….. it took me ages to be able to be able to function again. Even emailing was difficult and took me ages, so my motivation is to keep going , to keep my brain stimulated, to allow me not to forget how to do things and the value of involvement. To enable me to stay active, and my brain to remain stable and active for as long as possible. Not to use it = quickly losing that function. So that’s my motivation. I often talk about not doing things for people with dementia otherwise they’ll lose that ability. Sometimes it’s just a case of finding a different way but don’t automatically do it for them.
The science of involving people with dementia needs to be developed – this project aims to be an exemplar project on PPI involvement.
It’s important to know how effective ‘interventions’ really are. There are many ‘facilitated groups’ or programmes out there but none have been evaluated and proved. People with dementia will often be pleased with the content because they don’t know how much better they can be – they have nothing to compare them with.
We use to think of dementia in terms of how quickly people became worse whereas now we need measures for how we can live better. Positive outcome measures.
A good talk by Gail, I enjoyed that, even though my brain was starting to go AWOL……
Next was Dr Sarah Smith from Sheffield University and also a Twitter friend….
She showed images and a video of happy smiling engaged people with the app – people with dementia are very able with technology if given the opportunity.
As 2 o’clock approached I could feel my brain disengaging and my fingers became redundant so sadly I didn’t have many more notes, apart from the knowledge that the final 2 speakers were Dr Carlo Fabricotore and Dr Michael Craven from Huddersfield and Nottingham wo spoke of “Cognitive training games and motivation: a human factors and ergonomics perspective. Sadly it went over my head ……
And then Trish Bailey – Clinical Care Group Director from the Humber NHS Foundation Trust talking about the ‘My Health Guide’ with a Mum and dad talking about their son Matthew Prosser, who has learning disabilities and copious amounts of Care plans and their involvement in the development of Mathews book, which contains everything you need to know about Matthew including videos and training videos.
They don’t think Matthew has dementia, but this same process could be used. Our Care Plan isn’t the most important thing to know – we are.
I met some wonderful people, new friends and old and some I knew but couldn’t remember where from. It was so nice to have a conference in Hull and big up the local area and research.