Taking part in the IDEAL Research Study

IDEAL – Improving Dementia Enhancing Active Life

Tuesday saw a visit from Holly from the York Research team. The IDEAL project is a study I’m taking part in with Gemma and it was time for our second visit, 1 year after the first.

The idea behind the study is looking at how people live well with memory problems – what makes it possible to live well and what causes hassle – getting a whole family view – over a 3 year period.
It covers everything around what is living well – relationships and day to day activities – self esteem – absolutely anything and everything.

1 Year on, me and Gemma will have another 2 visits, each lasting about 2 hours each. It’s being run by the University of Exeter. The only hilarious thing about this is that I have no recollection of the first visit – luckily Gemma does! I thought I might remember something when I saw Holly, but sadly I didn’t even recognise her, which is very sad. Apparently Holly came to my house in York last time🙄, which you’d think I’d remember, especially as the interview lasted so long…….very funny – you have to laugh or you’d cry……😊

This time, there was a new consent form around Data linkage. They want to link my answers to my NHS records – my name isn’t linked as you simply have a participant number. I think this is a brilliant idea as it allows researchers to gain valuable information to add substance to their study. For example, do people who don’t live well access their Gp more often? Do people who live well have access to peer support groups and see their Gp less – therefore providing evidence for the need for more peer support groups. Just one example of the potential use of the information.

Sooooo, once we’d signed all the usual consent forms, we went into separate rooms. Gemma completed hers on her own and Holly took me through a mountain of questions but started off with the basic memory test

Questions were about my background, health, well being, interests and memory. One question was, ‘What other research projects have you been involved with….?’ – 😳 My response was …..’lots’……..but I could only remember 2………….😂

Holly is due to come again in a couple of weeks. Hopefully I’ll remember her next time……🙄

More can be found about this wonderful study on their web site:

http://www.idealproject.org.uk

And of course, if you’re interested in taking part in any research, then you can register on

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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