My new involvement with the PRIDE Research Study
Last month, we posted details of the Promoting Independence in Dementia (PRIDE) study, which is looking to find out how to best enable people to maintain their independence in the early stages of dementia. Our champion Wendy Mitchell is currently taking part in the study. We hear about her experience here with a cross-post with Wendy’s own blog ‘Which me am I today?’:
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 then asked me if I minded being audio recorded.
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.
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 haven’t already signed to be a volunteer for research you can find out more on the web site at: