Day 2 of Dementia Enquirers……

The storms of the day before seem to have subsided but the uneasy feeling in my room continued…..there was something about my room that felt so sad, as though a tragedy had occurred here and left behind it’s mourning……it felt empty of any kind feelings. I know that sounds odd but that’s how it was…..

Breakfast would be the first time we were all together as Agnes arrived late from another event and I’d already gone to bed. Twitter showed we were awake so at 8am we met up for breakfast and had our hug…..before putting the world to rights on all things audiology, but also dispairing at the latest news from NHS England that appeared on Twitter

As we all said….where is the evidence that taking people back to any time helps as some may find that period of time a distressing period in their lives; it will need updating constantly. Why not simply ask what matters to each person and treat them with kindness and knowledgeable staff? Why waste money when it’s being said no money is available for staff and staff training? Rant over…….

So time for a calming photo of St Katherine’s courtyard looking towards the chapel…

09.30 arrived and we all met up to start our session.

Rachael started off and we simply went round the table and introduced ourselves again as Tom Shakespeare, Rosie Ashworth and David Crepaz-Keay ( our more than helpful professionals) had now joined the party.

It was a full day and as Agnes said, our meetings are full of laughter and conversation which helps leads to more in depth outcomes…..many sceptics may see this as a trivial exercise and why on earth have we been given half a million pounds when it could have gone to real research……..well, this is innovative true research and the money could not be better spent….The national lottery were blown away by our format……

Time for an early morning piccie while everyone was fresh! The full gang😊

We recapped on yesterday afternoon and the successful bids from DEEP groups for funding and the detail of each project, which are fascinating.

We all stressed the point that we’re not trying to prove our finding better than researchers – we’re saying how academic research AND our own research could be a force to reckon with as we’re the current missing link. To enhance the current process of research could only be a good thing.

Interestingly Tom, said how the list of projects are unique and probably havn’t been researched before……which just shows their importance…

We had a wonderful discussion around the vast difference in care for those with different disabilities – David said  “Society makes these ‘mind/body’ splits when thinking of disability.”

We then went onto possible seminars and webinars opportunities. We’ve got a number of stakeholders (people interested in our progress) and those supporting us as well as ourselves and of course, the wider world to keep communicating with…..

We’ve been given a spot at Dementia UK Congress…so Philly and Rachael will be sorting that out to see who logistically can attend.

There was then a discussion which lost me a bit on Rights as I can’t keep that legal info in my head but the likes of Howard are far more knowledgeable and skilled with all this so I’m happy to listen and let it disappear from my brain…..

There’s a Special edition of the Purple Dementia Journal (an international journal) and in the new year are running a whole journal on articles by people with dementia on research and our paper will be in their. It will be online in December and hard copy at the beginning of the year. Great news!

We spoke of the various ways we could advertise the work we’re doing to show people our work and what we’re capable of…..as people living with dementia…..lots of great exciting ideas – watch this space!

Tea break time and still the conversations continued…..and David even met the needs of Rachael and Philly by going to the shop for cake ❤️🤣😂

After a break David spoke about developing an oral history project.
So why would we want to do an oral history about dementia now……..because we’re in a point of time where it matters…….

We’re marking a point in time, just as he did about asylums. He wanted people to know what it was like, but not from a perspective of others but a perspective of people who lived those lives.

Placing our stories in a social historical context, and sayin this is our story at this point of time will be a really important document for now but also the future to show what living with dementia is like at this moment in history.

So what is oral history? – it is simply us telling our story……it’s placing it in a social and historical context.

It’s history – what people will see as the state of the world at that point in time……

The curator of Oral history at the British library advised David how it should be done for his project and we would have to be trained at how to do an oral history interviews for ours, but what a new skill to learn!. We should be the interviewees and interviewers.

I found David’s talk the highlight for me. His enthusiasm for this project with us is so infectious, I just can’t wait to be involved.
If we don’t tell our story, someone else will and we will do it better……it’s nothing to do with technical skills, it’s all to do with values, OUR values to our world, not politicians, healthcare professionals or academics….OURS……..giving people the space for people to speak about their life worth living……because it’s called “oral’ it doesn’t all have to be solely the spoken word – objects, photos, capturing facial expressions are all important. Bringing jigsaw pieces together in an oral history format……the life history of so many people have been lost through dementia and we don’t want ours to be lost.

Blown away by this……⭐️ and he also added…..

You can’t go for more than 7 minutes without laughter”………❤️…I’m sure it’s laughter that help us focus on the task in hand, as we release the tension of having to concentrate so hard through laughter….

So now to lunch……..whenever food is available I eat……another reason for going to so many events! 😂

Anyway after lunch we had Sini talking about Theories of Change……..from the Charities Evaluation Services…..

Understanding why things happen and evaluating our work….what changes may happen, what sort of things will need to happen to make the change happen…..

Evaluating is Improving what we do and learning lessons for next time and it’s important to demonstrate what improvement we’ve made….and provide evidence to those who require evidence.

She showed a great slide demonstrating the chain of evaluating research…

Outcome is what you actively work towards, Impact is what you hope for…….

She used the example of having a birthday party to demonstrate each stage.

She suggested the best way for our project is to go backwards and start with deciding on the Impact we want to have ………it went a tad downhill and brain explosion time…🤯 I just started to get confused as Sini worked backwards, with different colours and confusion reigned…….we were split into groups and………we each had a different outcome to discuss the inputs needed……sooooooo

We had 3 topics to discuss in groups but my batteries were running out and this Duracell bunny was losing her hop……..

It was a wonderful discussion but a tad too far for me. I know I contributed but couldn’t type and contribute…..so here’s where I end for the day……..and after a long but amazing day we trundled back to our rooms for a piece of silence before tea….and passed by this wonderful statue on the way……

Final day tomorrow……

About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

6 thoughts on “Day 2 of Dementia Enquirers……

  1. re: placing wards in 1950-60 styles? positives could be Matrons who knew what they were up to, negatives, no central heating! I seem to recall the food was terrible, and TV was black and white. You are where you are in your head, not where your body is and this is the problem. So yes having reminders relevant to a bygone time has purpose, but the rest of the world is definitely in today so we need to be anchored there too. would we really benefit from an outhouse loo, just for assumed reality?

    Liked by 2 people

  2. Your blogs are always so inspiring Wendy, their honesty and humour blow me away. Bless you for the amazing contribution you are making to the understanding of dementia x.

    Liked by 1 person

  3. I remember an old psychology professor of mine talking to me about him running reminiscence groups for older people. He based one of these, taking place in a care home, on wartime memories and the homefront. One lady became very distressed and had to be taken from the room. It later transpired that this lady had served as part of SOE and had been involved in underground work in Europe which required her to kill others. This had left her with unaddressed PTSD as it wasn’t recognised back then. The greatest of care needs to be taken before we wantonly evoke history. Not everyone’s experience of these times equate to positive camaraderie.

    Liked by 3 people

  4. I’m not sure how turning hospital wards and corridors into social history museums will help improve outcomes for people with dementia or indeed anyone with perception and cognitive differences trying to make sense of what’s happening to them in hospital. Environment and design work has more to offer to people using clinical spaces than this☹️

    Liked by 1 person

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