So back to the beginning of our Dementia Diaries meet up ……..
We listened to Professor Amanda Lazar from America, talk about her research project. How can technology be designed to be more useful for people with dementia? She was here to find out what we get out of it and how the design of technology could be better for people with dementia.
It was then Rachel’s turn to ask us about our experience of dementia diaries….
We said that Dementia diaries existence needed to be available more widespread. People mentioned some amazing ideas…….Howard described it:
“As a window on what might be – virtual peer support.”
Wayne said it’s a ‘safe outlet to vent’….
It’s a way to raise issues that people might not normally talk about, e.g incontience, death etc.
Dory said the best thing about the diaries, ‘is the huge variety of topics’ people talk about.
Cuppa tea time, thankfully, as my head was exploding……so I was very unsociable and went back to the room to be on my lonesome for a while.
After a cuppa we spoke about how it felt when we joined and how we feel when we make a recording. Sadly, because I can’t use the phone anymore, the process makes me feel sad as it’s a reminder I can’t use the phone. I send Philly the transcript and she records it for me.
I suppose that’s why I rarely do many anymore…..quite sad for me and made me feel a fraud for actually being at the gathering……however, over a cuppa Dory spoke about her use of the technology, Alexa and it’s many uses and suddenly we thought how Alexa might be able to dial the number for me so I just have to speak……mmmm, there’s always a way. Must look into it more.
We spoke of how we can promote more people to record diaries.
We ended with a session around feelings – what makes us decide to record, how do you feel while doing it, how do you feel afterwards?
We asked what measures are in place for Rachel when listening to them? As some can be very sad, distressing and worrying. I said how the diaries is a success because of Rachel and the type of person she is. We trust Rachel, we know how she’ll look out for us intuitively because of the her character. If someone was in the role simply as an IT person to upload and promote, it wouldn’t give us the same feeling of being valued and trusted.
I said what a valuable historic web site it was and will become. Nothing like this has existed before, so it’s a wonderful legacy.
We finished for the day, all very tired, but having shared lots of ideas. We had a quiet hour before supper to chill and settle into our rooms.
After supper I walked down with Philly to light our evening campfire….and soon everyone joined us for a lovely evening of chatter and laughter before I left them all having a singsong round the fire to finish off the evening…….
And so to the final morning session before our trundle home. Philly sorted out people’s expenses, me and Howard sat with Prof Amanda and answered her research questions, then cups of tea in situ and we were off…….
Rachel spoke of the editing decisions she has to make…..there has to be a trust in Rachel that she will make decisions for the right reason, and we do.
We then heard from OT, Fran Hamilton and her role as transcriber and how much she enjoys transcribing and how much they teach her. Scripted or not, all are equally important. I always write something before I speak, otherwise I would waste time rambling instead of saying what I need to say. That’s my coping strategy. I speak very differently when I don’t have a script, very disjointed.
After a nice cuppa tea, I went back and recorded my ‘Dear Dementia’ blog to put on Dementia Diaries, which will be on the web site in the next few days.
It was then time for Dementia Diaries ‘Live’Performance…..with Dory, Wayne and Shelagh..
They each read various diaries, emails from volunteers and from people with dementia thanking the existence and discovery of Dementia Diaries and the value they place on them. It was lovely to hear the diaries delivered this way and would be wonderful to use at many events to promote their existence and in a theatre. The ‘performance’ was so powerful with diarists reading others recordings and linking them altogether……magic……
We finished off with a final section on Opportunities to Influence………..and Philly talked us through Research, Drama and Art opportunities …….
After wrapping up and before our final lunch, we were given a luggage label to write on how we felt about the 2 days and hang on the tree outside
………mine was this and in case you can’t make it out, it says……24 hr hug…..
I compare Dementia Diaries to a Time Capsule that is buried and opened many years later. How wonderful to think that in years time that Dementia Diaries will be used as historic evidence of living with dementia now.
No one should feel alone with dementia and Dementia Diaries opens up a new community for those diagnosed, allows new learning for those wanting to know more and makes us feel valued and part of a bigger family.
I shared 24 hours with the most wonderful people in the most wonderful place.
So here’s the web site again for anyone to listen to our recordings, for anyone with dementia who would like to know how to become a diarist and for anyone with 10 minutes to spare who would like to volunteer to transcribe our recordings…