My new involvement with the PRIDE Research Study

PRIDE – Promoting independence in dementia

Last Friday was my first visit from the research team involved with the PRIDE study.
The visit was around ‘Talking about memory’.
They arrived spot on time and I’d met both their smiley faces before. Lauren had given me a lift back from an event at Beverley Hospital where she was promoting Join Dementia Research, and I’d met Saba at an event at The DEEP in Hull at a conference.
My researcher assistant is Lauren Sugden and on Friday she was being shadowed by senior research assistant, Saba Alam, as they’re at the start of the study so it was to ensure the questioning went to plan.

Before they started I reversed roles and asked if they minded me taking a photo and Lauren interviewing me and writing about their visit for my blog and potentially for an article on the Join Dementia Research web site………before they began and asked me if I minded being audio recorded

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It was a fascinating interview and was broken down into sections:
Things you do – my various strategies for coping
Talking about memory – what it’s like now and how I feel about it
Perceptions about dementia – relationships and how others view you
Making decisions – I filled them in on the fact that I rarely make decisions now! Hence the ‘tuna’ blog last week
Getting support – or rather the lack of it in this area and why it’s so important to have peer support and basic emotional support when diagnosed.

Lauren interviewing me....
Lauren interviewing me….

We carried on chatting after the recording had finished but all too soon it was over. Sadly I wasn’t able to accept their invitation to an event during Dementia Awareness week as I’m already doing something each day of that week.

They’ll revisit in a year just to go through everything again to see if opinion, circumstances and views have changed. They’re still looking for volunteers to take part in this study, so if you live in the East Riding or Hull and have dementia, just contact me and I’ll put you in touch.
Others elsewhere in the country can volunteer for the study if they’ve matched on Join Dementia Research.
If you havn’t already signed to be a volunteer for research you can find out more on the web site at:

https://www.joindementiaresearch.nihr.ac.uk/

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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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