CaregiversPro study – Testing stage

Yesterday I had a visit from Rosie Dunn, a Postdoctoral Research Assistant working on the project.

The aim of the project is to:

“Our aim is to build a digital platform focusing on people living with dementia and their caregivers, ………….offering both a selection of advanced, individually tailored services that will improve the quality of their lives, wellbeing and medication adherence and enable them to live well in the community for as long as possible.”

The project is still in the testing stage and Rosie came to my house yesterday for the start of one week of testing by me as well as Gemma, as a supporter, to test the website. She asked my opinions today as she showed me round the website for initial thoughts and then will ask me again in a weeks time to ask me again once I’ve played with it.

The actual aim is very exciting, none more so, than because local people with dementia will be able to contact each other and local supporters will be able to contact other local supporters. However, I’m soooo glad they’re going round asking people with dementia to test, as there were many obvious things that needed changing on this first look round.

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One issue they have to overcome is the language differences as the trial is also taking place in France, Spain, Italy and Greece as well as Hull I believe. Each country will obviously have it’s own bespoke web site but on building the web site some things have gone slightly array. For example, me and Rosie had to use our dear friend Google to find out what “ Honourific Prefix” meant – simply means Mr or Mrs etc…..ha!

Many issues I highlighted are simple to rectify, however, some of the major things may give the developers the need for regular doses of paracetamol to ease their aching heads…….

If they get it right, they’re onto a winner. I’d certainly recommend anyone in my area to take part as then we could all chat to one another! PLEASE!

It does have other functions, and may in due course be linked to Health Professionals, but the chatting to locals is the bit I like most as I don’t have any playmates in my local area as yet.😩

BIG caveat for the developers though………if you don’t listen to the people with dementia who are testing and change the design and content, you’ll sadly be wasting your time and valuable resources………..

More detail about the study can be found on their web site.

http://caregiversprommd-project.eu/

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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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