Yesterday was a welcome trundle to York to see all my playmates at Minds and Voices. I missed the Christmas meeting, due to transport but yesterday Stuart was heading towards Newcastle so could drop me off at the Park and Ride……
The early morning saw the Supermoon but I wasn’t up early enough to see it turned red.However I was up in time just to see the shadow of the earth across the moon. And on the drive to York I got a piccie of the supermoon…….
Then it disappeared as the fog descended
And then the fog disappeared and it was a lovely sunrise!!!
Damian met me at the station and we trundled our way to the venue to be met by Anna, who is doing the Skydive with me. Damian then announced that he would sacrifice doing the Skydive and be the ‘Designated Survivor”…….just like the royal family don’t travel together, we can’t have 3 of Minds and Voices people Skydiving🤣😂🤣😂 any excuse……….
Damian talked to me about our long held plan of setting up a DEEP group nearer to my home as it’s becoming increasingly difficult for me to get to Minds and Voices. But I said how Minds and Voices will always be my group as that’s where it all started to get better for me after my diagnosis. The comfort, familiarity and safety I feel there could not easily be replicated somewhere new. But never say never I suppose…..
Today we had Jason from Exeter University. He is doing a PhD study on What helps people Adjust to living with Dementia and the value of Peer Support group and Advocacy. It’s part of Rachaels Litherland bigger picture on the value of the DEEP Network.
All our playmates started to arrive and Damian went to collect a new playmate, Alison. Those around me warmed their hands on my tiny hottie tea bag as it was a freezing cold day.
While we were waiting some spoke of the loneliness they’d experienced at Christmas. In a room full of family they felt lonely because they were being excluded from the conversation or excluded from activities. Families sometimes do things for the kindest of reasons which makes it all the more important to TALK to one another and say how its making us feel. Very sad.
Rita said how she felt so at ease and relaxed at Minds and Voices and so part of the group – wonderful. So often, it’s the little conversations around the room that reveal so much.
Damian welcomed Jason from Exeter University. He wants help in the design of the questionnaire and the style of it – fine tune. Mmmmmm, he’s never encountered us before…poor chap😂🤣
We went round and introduced ourselves to Jason. Jason told us a bit about himself – a nurse who worked in memory clinics for many years, now doing research for Exeter.
He had specific questions for us.
Is the questionnaire too long?
Is it designed in a way that’s understandable?
Is the print size ok? Etc
The initial questionnaire we saw was overwhelming and far too long and we agreed immediately that ‘impairment’ should be changed and replaced by “Dementia”.
He showed us 2 types of stigma questions – one American and one of Jason’s own.
Charlie said, “we’ll upset Trump if we don’t use theirs’ so we all said how we quite like the idea of upsetting Trump -😂🤣……sorry American readers…….
The 3 themes of the questionnaire are…….Are we being treated differently, Quality of life and Depression.
The whole process was fascinating because our group is made up of people at different stages of dementia and with different abilities. So the issues raised were far ranging.
Jason kept talking about “scales” but scales meant nothing to some from the blank expressions. Some could not fill it out without help, to others being overwhelmed by the questions. One even said how he found answering questions about his dementia upsetting at times. Another how the questionnaire was c*** and he preferred to be asked questions. Another how so many words on the paper just looked jumbled – I asked her, what happens when I cover everything except the one question you have to answer?…..her response was “ooo yes, I can see it now” …….there’s always a way……just takes time and effort to find it…
Questionnaires can make you feel so stupid sometimes as you struggle to remember or work out what you’re doing. I saw our newbie lady with tears in her eyes and just wanted to hug her but then got distracted myself and when I looked up again she was wiping the tears away and laughing at something else. Hopefully it was not the questionnaire that had made her anxious and upset and even more so, I hope it wasn’t us.
We tried to whittle down the questions to a manageable amount by deleting some of the demographic questions, but even they raised differing issues.
I’m not sure Jason knew whether he was coming or going but I imagine he learnt a lot about how to approach a group another time and maybe do somethings slightly different if he did it again.
It’s at times like this that I think the richest and most valuable answers and opinions from people with dementia would come from sticking a recorder in the middle of the table and listening. Yes, ask the same questions but then listen to us ramble. I can hear the aficionados of quantitative research saying, ‘ah yes but that’s so difficult to analyse”………
But why shoe horn us into something so many find so difficult? When you may just get random answers instead of what we really think because we get distracted, anxious or overwhelmed by the words in front of us and tick the first thing we see?
I myself learnt so much today by simply listening to aside conversations and watching people’s facial expressions with regards the questionnaire than any amount of ticking boxes would do……..just my humble opinion …….
Before I knew it, it was time for my early departure for my bus. I left Jason in the capable hands of the rest of the mob. Soooo good to see my playmates…..
And so nice to see the aconite in flower in the churchyard on my way into town…..