Dementia Involvement Group East Riding
We met at 1pm in the local pub who had kindly let us have the venue for free. Emma Williams – local Dementia Action Alliance Coordinator – had done wonders finding the elusive free venue. There were far more than we imagined and a real mixed bag of ages and people – 14 in all – wonderful, including Emma’s mum😊. We’d been advertising on Twitter, Facebook and locally..
Emma started first by welcoming everyone and then I said a few words before we went round the room – everyone saying a bit about themselves and their connection to dementia. There were some people dementia and family and simply those interested.
We had 3 dementias represented – someone with frontotemporal, another with vascular dementia and me.
What soon became obvious was the lack of help people had received when diagnosed. ‘Authorities’ help? – nope’…..seemed to be a common experience. One local chappie told us how there used to be a service for young onset but it was disbanded round about 2010. Since then there’s been nothing.
Many seemed confused as to the difference between dementia and ‘Alzheimer’s’ etc ……so I gave my explanation and how support and explanation is sadly lacking when you’re given a diagnosis.
The stories people told were very varied and interesting and people’s experience was Wide and varied but all followed the same theme of having gone through the experience alone. Most told of the time at the beginning when they were mistakenly diagnosed as depressed and put on antidepressants. In my humble opinion, everyone diagnosed who wants to be, should be referred to a peer support group and the same goes for family and friends. As I’m frequently saying:
“No-one gives you a handbook”
So you’re left to navigate your way round as best you can, but often alone.
Emma went through ‘Working to become dementia friendly’ reasoning and people went through their good and bad experiences. Locally, Neros café and the café in M&S in Beverley along with Burnby Hall in nearby Pockington scored brownie points. The wooden spoon went to Hull Royal Hospital…..surprise, surprise! – the same hospital I had an horrific experience in and I’m finally meeting with PALS in 2 weeks time to discuss..watch this space!
The group proved that services are sadly lacking as everyone had so much they wanted to say and questions they wanted to ask. Total strangers, all with something in common, talked and talked, because this was an opportunity to spill out all their worries and concerns. I’m sure we could have talked for another 2 hours without any problem at all but sadly before we knew it, our time was up.
For me the new group was tinged with sadness as we’ve learnt that Emma’s post finishes at the end of July. It’s Emma’s personality that makes the group into what it is so we’ll have to see what the future holds.
AND I got home and my heating was all fixed as Gemma had come over and waited in for the Gas man so I could go to the group………😘