Yesterday was our Young Dementia Network event. It brought together researchers and people with dementia to talk about the value of research into care.
It must have been a while since I had to book a taxi to the station. Maybe a couple of weeks. I forgotten that process, that I even had to do it until I thought, ‘how would I get there’🤔…….then 😳😱🙈……..I need several this week and had simply forgotten…..just goes to show how quickly things disappear from our mind.
I went into the booking office, armed with bits of post its and words and luckily they still had one available for Monday morning.
The night had been full of rumbling storms but they’d gladly finished emptying their contents from the sky when I opened the curtains. It was a misty murky taxi ride over the Westwood but these beauties greeted me as I reached the station
I adore Poppy’s ….their simplicity, no grand show, but simple petals, a simple form like no other – beautiful ❤️
Good job I wasn’t heading to London as my usual train had been cancelled😳🙄……..More storms were forcast at lunchtime and you could feel the skies recharging as we trundled across the Humber, the tip of the bridge shrouded in mist.
My Alzheimer’s Society Research Network buddy, Sandra, had offered to meet me at the station and go with me to the venue. She’d even sent me some marvellous instructions to boot……As I was sat waiting for Sandra, out came playmate Julie. Howard couldn’t make it after all so instead of taking the tram we all shared a taxi.
We arrived at the venue, called the Diamond Centre and the centre stood up to its name..
Inside I was met by a lovely hug from my dear friend Professor Pat and then many more people followed. I met a new playmate Shelley, who is part of the lovely programme ‘The Restaurant that makes mistakes’……I love meeting new playmates.
Jan started with the breakdown of the day and then it was me. Part of what I said was:
“Many of you here today are the very people who give us hope to find those ‘best ways’, those bench marks to live by. To you we’re all grateful for your passion, your determination and your desire to help……..we are experts by experience and your expertise along with our expertise must be a winning formula.”
Then it was the ‘goldfish bowl’….people affected by dementia talking together about a set topic, research on this occasion, with the audience listening then able to ask questions about what we’ve said……we all went around the table and introduced ourselves. There were Kevin, Julie, Shelley and me with dementia and Susan and Paul supporting Keven and Shelley. Reinhard helped keep us in line.
We had so many wonderful conversations on care research and our ability to find research to take part in. Many spoke about their involvement in medical research. So often we have to navigate this alien world and don’t know the wonderful care researchers exist. It would be so good if there was a way researchers could find us.
It made me question how we get out the word about care research as even amongst us, it wasn’t that obvious. I said how when people hear the word research many often simply think of medical research and are oblivious to the existence of care research…
“It could be a long time before we get a cure and care is needed now” said Shelleys husband Paul.
Funding needs to be given equally to care as well as cure. It was a wonderful discussion about research from our perspective.
Up next was Prof Pat talking about her research on the Family Experience of living with young onset dementia.
Pat was talking about dementia from a personal and professional perspective.
She spoke from a personal point of view first and her own connection as her husband was diagnosed with Young Onset many moons ago when the children were much younger. Then went onto her research project and showed a lovely piccie of her and Mel….I was a Society monitor on that project and is how I met the Pat and our friendship began. They captured peoples stories, children’s stories. The smallest children came to them via their parents and Mel would ask them about their day, play Lego with them and simply let them talk. Some children spoke of the envy they had of their friends who had parents with cancer as they saw that as being easier for people to understand.
Their study gave children permission to talk about the negatives of dementia. Not everyone can live well. Not everyone wants to live well. Pats family didn’t live well with dementia.
For children it can impact on educational experience. Living with the grief while someone is still alive. Bringing weddings forward, etc. You can’t expect to put things right in the future, make amends , say sorry, as this won’t be possible for those living with dementia.
A wonderful talk from my lovely friend, but then I knew it would be.
Over lunch many people came over to chat. I’d offered to be on the Alzheimers society research Network stand, but sadly I hadn’t realised, that we don’t have our own research network banner, it was simply a society banner….which was such a shame as it didn’t say what we do on the box, but Ciara, assured me they were looking at getting their own banner 👍
Another fascinating conversation I had was with John Hudson from the Cognitive Daisy study
“They Cognitive Daisy comprises a flower head of 15 petals, each of which is colour coded and corresponds to performance on a specific cognitive task.”
The petals are left white if you can complete a task and coloured if not.
I said it could be used as a tool at diagnosis to show people how all was not lost when being given a devastating diagnosis. People just diagnosed could take the tests and see how much they still could do and for the things they had trouble with, it would highlight where they needed help and could offer practical solutions……
Once we were back in after lunch it was the turn of Prof Claire Surr…..over lunch, Claire had been showing me piccies of her adorable puppy ❤️…..but once I sat down, my ipad died again 🙈😩😱🤯……..it lasted the whole of Claires talk on ‘What Works’ in training…….😔
It only started again when the next speaker Dr Louise Ritchie started her talk on Dementia in the Workplace…….I suddenly looked up as the name was very familiar and I realised I’d taken part in this research in 2014/2015……one of my first research involvements………
Louise’s research raised more questions than answers. She’s produced an informative set of leaflets specifically for employees with dementia, for Human Resources departments, for colleagues and for employers – wonderful ⭐️
I took a piccie of me with both John and Louise but can’t find them anyawhere 🙄
Playmate Julie expressed the opinion that leading charities need to set the example and employ people with dementia on a paid basis.
So after a quick break we split into 3 workshops – Employment, Health & Social Care education and Family Intervention. I joined the one on Family Interventions with Prof’s Pat and Jan. We immediately spoke about the different challenges with Young Onset. You may be working, have a mortgage, have young children………we need practical and emotional advice for all the family.
Shelley is only 45 and spoke of her experience in Nottinghamshire, where they have one of only 2 ‘working age departments’ in the country……. Turns out my other playmate, Kevin and his wife, live in Pontefract!! I grew up in Pontefract😳 small world syndrome…….
Once again such good conversations going on…..I said, sometimes we just need to know that someone is there IF and when we need support. Stage appropriate service needing to be considered as well as age appropriate….we spoke how we have to fight for everything and how our personality can effect whether we find things out quickly or are left to drown.
We said soooooo much and learnt so much………
And I got a piccie of me and Shelley…..
We ended with each group feeding back their main points. From all the chatting, an awful lot was discussed. I just know I thoroughly enjoyed myself and best of all I met some lovely new playmates and their partners in Shelley and Kevin………..
If you’d like to know more or joking the Young Dementia Network, there’s more information if you click on the link below ….