It was a busy start to the week.
On Monday was the Dementia Alliance International online UK support group and then finishing off what I wanted to say on Tuesday.
Tuesday morning, I was supposed to meet with an organisation that were kindly going to support my local Memory Cafe but this was cancelled at the last minute. I was then off to The Crucible in the city centre and thanks to Kath Horner, I was there to talk about my experiences at the local Dementia Action Alliance meeting, which brought some new opportunities to engage locally.
In the afternoon I went by train to Manchester to meet up with members of the Alzheimer’s Society, 3 Nations Dementia Work Group, Steering Group for a meeting the next day.
I am proud to be a member of the steering group, I am a deputy not a full member meaning I am learning about the work of the group, preparing to become a full member when the opportunity arises, which is a great idea.
Even without a diagnosis of Dementia, you can have what is called “intruder syndrome” where it takes a while for you to be comfortable working with and learning the processes of a new group of people, a bit like starting a new job or the first day at a new school.
The next couple of days I was left to recover. We can speak and be involved in campaigning and improving the healthcare systems around Dementia but we have a price to pay after.
There are those reader, that question our diagnosis and whether we can or should be doing these things, but I will leave that to an article on Wednesday.
The Negative Narrative of Dementia
In her article today, Kate Swaffer talks about the negative narrative in her article Rethinking Dementia: Ban BPSD.
Maybe Matt Hancock MP and Jon Ashworth MP should have a read but I will be surprised if they do, even more if they invite me to have a conversation.
This week was the Labour Party Conference in Liverpool, a few days of speeches promising much but as always the devil is in the detail and whether they have the will or the resources to deliver.
The Tory Party conference begins today, already clouded in controversy after the behaviour of Julia Hartley-Brewer “caused considerable distress” to people at the Labour Party conference, including disabled party members with autism and anxiety conditions.
This weeks Blog
In his blog, George Rook talks satirically about the ridiculous notion of Munchausen by Dementia
On the subject of satire, here’s Claire Sweeney video of her 15 Minute Care Makeover
Alzheimer’s Speaks Radio, Talks to Peter Berry, Who is Living with Dementia
Peter Berry’s 65th weekly video is now available on YouTube
Stephen Tamblin’s 21st video on Facebook
Jeff Borghoff’s video AlzLife – Stigma
World Alzheimer’s Month
Today is the last day of World Alzheimer’s month, poorly covered by the media and their negative narrative of a life with Dementia.
I published a daily blog for World Alzheimer’s Month here and World Alzheimer’s Day here , also
Today’s final re-blog as part of World Alzheimer’s Month, focuses on an a article by Wendy Mitchell, aptly titled “Clearly we have much still to do…”
“That’s why I believe it must be so hard for those supporters to hear about us surviving each day as we do when their loved ones have declined quickly. It doesn’t make sense to them because their experience is very different.”
Clearly we still have much to do
Well that’s the end of World Alzheimer’s Month, I’ll get back to the usual articles from tomorrow with the monthly articles “In The News” where I link media articles around Dementia and Disabilities, on Tuesday “In The Blog” a round up of relevant blogs.
On Wednesday a new series called “Rant Wednesday” where I will give my own opinion on what has annoyed me over the last week.