Apologies for the very long blog, but sooooo much to tell on day 2 last Friday…….
After an exhausting day but amazing day 1, day 2 started off slightly later with breckie at 07,45. The conference was due to start at 9 but we had the bonus of our rooms being right next to the conference area via a sneaky corridor…….
I’ve found the most exhausting part of all this is the concentration needed between translation and speaking. The 2 languages floating about the air at the same time scrambling my brain if I don’t concentrate really hard. So banging heads have been a constant feature so far….
But unlike the previous nights event, where I was being interviewed by an Italian, today it would be Philly and Sarah, so one less thing to worry about. We’d be having head phones on for the interpreter to tell us what’s happening when others are speaking but at least we would understand each other on stage.
We arrived to Italian chaos….no one seemed to be panicking expect us though😂……
It took 3 introductory speakers before we got the headphones right and could actually hear what our interpreter was saying……..🙄…..but then we finally got there and we settled down…….
The first people were saying how people with dementia were often forgotten and needed more support in the community. There were many dignitaries speaking for a couple of minutes each first….a tad as though trying to make sure they don’t miss out anyone and me thinks very political………
So to the first real speaker – a Dementia Council Social Worker talking about the experience of creating a better place to live in Pinerolo for those with dementia.
I felt we were missing so much as the interpreter only told us the bare facts of what was being said…..maybe that’s how it is but I wanted to know more……so we asked Molly to go have a word…….and it became better…..but we knew it was soooo difficult for her as Italians speak soooo fast!
The social worker was saying – By everyone working together we can help slow down the progress of dementia…..she spoke of the starting point , nurses social social workers, doctors starting to form group to find how how to manage people with dementia….. (note all medics). They then started to put these projects into practice, meeting together as professionals. GPs are the point of reference for the families.
They started in 2017 to create ‘Dementia Friendly’ communities.
She stressed the talent rather than the dementia ❤️… so they started a project where people could explore their hobbies and special talents of those with memory problems…
Marcello then spoke about ‘experts’ but actually people themselves living with dementia….not medics….⭐️
The next up was a psychologist…….in the last 20 years there’s been a big change in the numbers living with dementia…..(me thinks it’s just spoken and diagnosed more) He said how this illness goes on for years and affects the whole family
The Italians speak so fast that the interpreter was having trouble keeping up……😳 must be difficult but it was a shame as I would have liked to learn more……but certainly not her fault
People were laughing at certain points and it was such a shame we couldn’t join in the joke…..😔……..
Many families go into denial that there’s a problem……many do nothing but doing nothing is not good, he emphasised the need to act straight away and do something about it as there’s still so much to be done…. – (nice to hear) ‘don’t hide away in your houses, as you can still do such a lot’
They’re trying to avoid people with dementia going into hospital because that’s a trauma itself – (same here….🙄) As usual the problem is finance and lack of money………
3 million families in Italy live with dementia……
A local councillor from Pinerolo was up next………the whole community has to work with people with dementia, not just medics……….she spoke of the event last night with so many locals attending, showing how people are willing to be included….and want to help……but there are social issues and everyone needs to be able to be included. No one must be excluded to make a community an easier place to live, young and old and everyone in between….
The interpreter couldn’t keep up so the perfect time to take a selfie with the audience and Molly waving behind us…😂🤣
“For people affected by dementia the days can be long” and then she opened it up to the audience asking what could be done to help…..one person spoke of her mother and said how any form of activity was better than medication…….and the caregivers need more support to have a break.- – a desperate plea for help….and Marcello told her to contact him…..a nurse spoke from a different region about how people are diagnosed and then she doesn’t know what to do next….. (me thinks the post code lottery exists the world over), In this area where we were speaking they said it was good but in others, they aren’t quite as advanced….(me wonders what the people living with dementia would say here, would they think it was good or is that the professional image 🤔)
The Valdasian church was up next. She spoke of the project around Quality of Life in retirement homes. They spoke of the important principles of Respect for the Rights of the person……..the one slide they showed with English was difficult to read because of the weird colours they’d chosen…..🙈
They ended before break with a video showing different relationships between people…..
It started with some familiar words on screen….”Nothing about us without us”
Eloisa was interpreting for the audience…..and introduced us ……
“You’re changing the world” Eloisa said of Innovation in Dementia ⭐️⭐️⭐️
Philly asked me how I’d felt at point of diagnosis….and I spoke of the importance of language and how Healthcare professionals should never underestimate the psychological effect of words and body language.
Sarah was asked how I’d changed…..and she eloquently spoke of the role reversal and change in personality…….
After each question and answer Eloisa translated for the audience.
We spoke about living alone, being part of the dementia family, how my daughters have enabled me rather than disabled me, how I ‘look as though I don’t have dementia’ and Sarah gave a brilliant answer……., are services in Britain any better than in Italy……..(nope, we have pockets of good and bad just like in Italy) my final thought for someone newly diagnosed
“Don’t think it’s the end,,,it’s the start of a different life of adapting still filled with laughter and adventures………”
and for their supporter…
“Please don’t dwell on what you may have lost…..a moment dwelling on the losses is a moment lost from enjoying the magic moments that can still exists”
I ventured into new territory by ending with:
“Grazie mille per l’ascolto”
Their applause was so kind, Eloisa did a wonderful job at interpreting for the audience….and she asked Marcello to ask them all to stand and wave instead of clap, due to my hyperacusis. ❤️❤️❤️❤️❤️❤️❤️….how kind, how thoughtful, how simple….
While the last speaker was in full flow I typed ……it was the man we were with last night, so I’d already heard his story about Robin Williams and my brain just wanted to sit in it’s own world
It seemed to be the norm for people to chat during people speaking as there was a constant buzz around me….just seems rude to me but normal for Italy….
……then it was time for lunch……
They’d set us up in our own private dining area in the breakfast room so we could have some peace as there were lots of people . Our adorable waiter for our stay appeared out of nowhere and answered all our requests with humour and kindness…..
After lunch, we walked back in and someone wanted to give me a present of a drawing she’d done of me while listening……how amazing ❤️
Marcello started off after lunch by thanking the hotel for the huge welcome they’d given the 3 of us and had made our stay amazing, by going the extra mile and wanting to learn……the 3 of us whooped with joy and clapped them very loudly as they’ve made our stay very special……..
Molly was then first talking about the role of Nursing Homes in creating dementia friendly communities, like Mollys and Marcello’s that we had lunch in yesterday….she spoke of the barriers, the stigma that exist within the community….
“The problem is not the dementia, but the way people around you behave”
Small things in the community make life easier for people….like putting a bench halfway up a hill……we need to be given opportunities not barriers put in our way……
They involve people with dementia in their nursing home in decisions.
“Everyone has a right to be involved in their community…”
She spoke of the importance of involvement and how it makes people with dementia feel. The most important resource they have are the people who live in the home…Pet therapy is frowned upon in some areas as pets aren’t allowed in the home, so Molly is trying to change this……People with dementia have to be the ones who make the decisions….
Molly could now breathe again, after doing a wonderful job…
Before Philly was a man talking about technology from one of the Universities …..technology has to be able to be understood by people with dementia…
People get frightened by using technology – the same the world over. He showed technology for daily life and spoke of me and Sarah talking to each other then finding solutions, like tracking each other. It’s important for everyone to ‘agree’ to use technology..(me thinks that if people understand the reason ‘why’, they’d be more willing to give it a try)
Many healthcare professionals don’t know much about using technology so they need more education of the possibilities…and those who work in the care sector need more knowledge and help in understanding the possibilities of technology…he also made the important point that people with dementia are rarely asked what they design a product – YES!!
I needed to switch off my brain to save enough battery for Philly……
So to Philly……think my brain was about 15% so just enough power to support Philly
She was talking about challenging the tragedy narrative that comes with dementia…… how we need different conversations……on Rights, Accesibility, Voice, belonging, recovery and discovery……..
Philly explained that Innovations don’t provide services but give people with dementia a voice….and are a small perfectly formed organisation where they work from their spare rooms…(me thinks they show how big isn’t always beautiful and that passion, understanding and big ideas don’t need large offices etc)
Once again, Eloisa translated for the audience…..
We need to make Rights real……and enable people with dementia to understand their rights and know what to do when their Rights are denied. We have lots of local projects related to Rights and Philly quoted the Scarborough group whi had had a hand in people with dementia having access to the Blue Badge for parking.
It’s often the environment and other people who deny us our Rights – e.g poor signage, poor lighting etc, so we’ve produced guidelines/checklists with people with dementia around environments and lots of other situations, all available for free on:
She spoke of everyone with dementia having a voice and how DEEP group have multiplied hugely, now being around 120…..all people living with dementia meeting together, just like me and my playmates at Minds and Voices…….then a brief description of Dementia Diaries and the value this has in enabling more people to have a voice.
Everyone of the projects mentioned are difficult but they are deliverable anywhere in the world.
“We can build a better world by where the narrative of tragedy is replaced by the narrative of hope”
a wonderful way to end the conference…..……..❤️