Bradford Uni visit…..in the snow!

Yesterday started off very depressingly by seeing a mirage on the early morning TV of a man who’d become President of the USA – I was hoping it was my dementia playing tricks on me and normality would have resumed by the time I got back home………. Or maybe dementia will work in my favour for once and erase him from my mind, for Obama to be forever president in my world…….😊
But the good news was I was heading for Bradford University. I had 2 meetings to save 2 trips. The first of which was with the lovely Phd student, Courtney, who I’ve been working with since the start of her Phd.
Today we were meeting to discuss a paper she was writing on moving beyond ‘consultation’ and into co-design of research. “Co-design” or “Co-production” is the new buzz word at the mo and some use it but with little meaning or understanding, so I was pleased to be part of this as Bradford certainly know the meaning.

It was an early start in order to fit both meetings in and the weather was suitably depressing to match the news of Trump.
No nice sunrise over the Humber this morning…as it was pouring with rain……however, the world started to turn a whiter shad of ………..white as we approached Leeds😱☃☃

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I must have been expecting it as yesterday when I got my clothes ready I put out my snow boots….😳 I trust what I do the night before so, the fact that I’d forgotten it was going to snow didn’t stop me wearing my snow boots…..

Courtney had been texting me on the way to say they’d had bucket fulls of the stuff where she lived and was going to be late, but earned a BIG gold star by asking Gerry to meet us with a cuppa…….so all was fine in the world while we waited😊 and we even got a second cuppa from Gerry when Courtney arrived….🏅

Lesley (who cares for her husband) was also there and we’d been involved from the very conception of the idea.

We spoke of how it has to be a sincere partnership and meaningful partnership. If you ask our opinion it has to be a genuine involvement – it should be ever evolving.
We spoke of the challenges that exist on both sides but I was saying the challenge for me is not trying to see it as a personal opinion but rather one of people with dementia in a broader sense.
We came up with so many ideas in such a short time and the paper will be brilliant to share with so many people……to educate others as to the real meaning of ‘co-design’……

a great start to a snowy day in Bradford....
a great start to a snowy day in Bradford….

Next up I was with Sahdia Parveen at a Project panel meeting for her Caregiving HOPE study. I was met by the wonderful Sandra Barker who is also a research network volunteer as we were there as research monitors as well.
The question the study is asking:
‘How are familism, willingness to care and preparedness of carers associated and how do they change over time.”

We were all there to hear how the first survey had done along with the first interviews and to hear a breakdown of the data, which was fascinating and surprising.

Can't believe I forgot to take a photo of the people there!!
Can’t believe I forgot to take a photo of the people there!!

Sahdia spoke of how she’s smashed her target of recruitment and had surpassed the initial figures and was still getting Trusts applying to be part of the study………the sceptic in me thinks it might be to do with the league tables that now exists. However, the good news was that my own playmates at the Humber Trust had surpassed expectation – yehhh!! Sahdia is amazingly organised and prolific researcher, which has also been the reason for such high uptake.

So the aim now is for the rest of the recruitment to be in south asian carer organisations using Trusts with large populations of South Asian families.

Sahdia also gave people who were interviewed by herself cameras to take photos of objects that had significance – which was marvellous – I suggested  the potential to use these in the dissemination process to reach a far wider audience is soooooo exciting and we had lots of ideas.

The next stage is to bring forward the next set of interviews with the general public as this wasn’t due to happen until late next year. But everything is going so well, that Sahdia is choking at the bit to get started. So we’ll be involved in helping Sahdia create this next stage..

The findings so far on this study are amazing, and the demographic data has some surmising results already so can’t wait to see the finished result.

The world wasn’t quite as white as we trundled home, but as usual in this country, it caused maximum chaos as it fell…….

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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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