My first appearance before an Ethics board…….

So Friday was Friday 13^th …….. would it be an unlucky day for our project looking for ethics approval?

I’ve never seen what goes on at an ethics board meeting before. So many researchers fear them and they often seem to over protect or underestimate people with dementia, so I was expecting an interesting experience…….research studies have to receive ethics approval to make sure those taking part are safe.

It had started off a sunny day but the grey skies soon descended and fitted my mood for the day….no matter what you thought of the result of the election, we mustn’t let it divide the country. People made their mind up for whatever reason they thought best & now we have to stop all the divisions and hatred that exists. Sadly I can’t feel anger anymore or I’d be ranting and raging, all I can do is let my eyes leak ‘til they’re empty……and so I was glad I had something to fill the space on Friday, but knew that if the panel upset me, I’d just cry and that might or might not work in my favour! 🙄

The taxi driver was a smiley soul but we trundled to the station in silence, conversation all spent for the day. The first train to Hull was on time and I got my cuppa tea before the train to Leeds, which was delayed of course…..

The sky was undecided as we trundle past the Humber…

The train was crowed with festive fun as people with suitcases struggled to find a spot for them to rest and groups raucously brought out clinks of booze and food for the journey …..and exchanged terrible jokes 🙈 as this was a lunch time trundle so very different passengers travelling alongside ….the volume of noise too much for me to decipher punchlines or conversations so I looked out of the window and went into my own world instead…..the peaking sun hiding the torrential rain falling in the distance

We were meeting the committee in the Queens Hotel, next to the station in Leeds and Mark Wilberforce and Louise Newbould, from York Uni we’re meeting me there for lunch ahead of the time so we could talk tactics 🙄. Their project is called HOPES – Helping older people to engage with social care….it’s looking at people with dementia but also people with mental health needs….it’s a really big issue that we don’t address at the mo.

NHS committees are used to to medical trials and medical trials can cause a lot of harm so they tend to be cautious but they are getting used to more qualitative social research than previously. They used to medical researchers ‘Doing’ things to people, so now they’re having to understand risk in a different way. Ethics committees are all about interpreting harm very widely so e.g in our sort of project over probing questions, or overlong interviews……

Ethics committees are volunteers so only get expenses which surprised me hugely….the fact that there’s 3 of us turned up shows we’re keen on ethics…..I promised Mark, I would be polite and wouldn’t mention the fact that I just wanted to see what they were up to 🤣😂

It was mine and Louises first ethics committee….Louise very nervous, me very excited 🤣

In the first part of our study we want to talk to people with dementia and those with a mental illness who were having trouble with care visits into the home and accepting they need help and the reasons why they might refuse help. So having trouble receiving it and accepting it…. Sometimes Home Care staff will dismiss people who reject home help due to the circumstances at the time – it’s easier to move onto the next person, such is the restraints on their time. They may be rushed, the care staff may not know how to interact or how to cope with the situation…..how can we train staff better to understand how to perform Home Care?.

The biggest thing I learnt was we can’t control the venue where ethics decide to hold the meetings. The Queens hotel was a real challenge for me with crazy flooring once more, mirrored lifts and little signage so our able enablers really need to help us with those difficulties. I should have taken piccies to show but I was concentrating on getting from A to B 😳. There was also noise coming from every direction, with Christmas parties and people walking past so hard not to get distracted…

After lunch we headed up to sit outside the Headmasters office (that’s really what it felt like 😂)and just wait to be called……Mark and Louise were nervous, but then all researchers are nervous of ethics, especially NHS ethics…..Mark whipped a tie out to look the part……the research is their baby and timelines are tight, so ethics delays can make or break their project.

We chatted to the 2 chappies also waiting but thankfully their appointment was for 3pm and ours 2.30. They were researching medication in children’s hospitals and the processes…….and were from Manchester ……so had a longer journey than us………it was nice chatting to different researchers in a different field  and it turned out Louise knew one of them as her and Mark had both worked at Manchester …..small world syndrome……

The committe were running very late but a very smiley friendly room greeted us.

I asked at the beginning if they would mind if I typed……and explained why, with the help of Mark.

We introduced ourselves. There were loads of them, probably 10 or 12, which surprised me and the room felt very cramped and full – good job they had smiley faces. One of them was the Chair and another one was in charge of asking us questions.

They started by saying  how they loved our application, how they were please I’d attended and that Mark and Louise had involved me, Maria Helena, who also has later dementia and her husband David.

They asked me the first question 😱about the length of the questionnaire, which took me by surprise as I wasn’t expecting any questions to be directed at me, but that was a nice surprise.……our  questionaire is due to take an hour. They asked if this was too long for people with dementia. I said how flexibility will be key, how each individual is different; how the individuals capacity and the type of day we’re having would influence the process.  I turned to Mark, hoping that was the right answer, as I think them asking me took us all by surprise!!

They involved me in the questioning so much which surprised me hugely. But it meant I had to stop typing to concentrate in case they snuck another one in 🙄😳…..we were finished in record time apparently as they only had 3 or 4 questions and it meant that Mark, at the end, told me to mention Dementia Enquirers 😇….and how people with dementia could well be in the hot seat up and down the country and I would feed back about their smiley faces…….

We were all very happy and very pleased when we came out. It was a happy end to the week but then, needless to say, it went downhill as I entered Leeds station…..my train was delayed and then in the blink of an eye, it was cancelled 🙈……we were told to go to Selby and wait for a connection there. The train we were sent to had just 2 carriages and was one of the oldest trains on the planet and was rammed like sardines when I got there. I squeezed on and a smiley face allowed me to have his seat. More sardines arrived and just squashed onto the train even more.

Once we got to Selby, there were more delays, another sardine train arrived and we joined the squash on that one. Another smiley face gave up their seat for me, so very grateful for those people. A Twitter pal posted this on Twitter to me…very apt with the travel trauma I’ve had lately…

I finally arrived home, very tired after a roller coaster of emotions day………tomorrow’s another day and me thinks a chilled weekend is in order………but a great introduction to the world of ethics committees …..

 

 

A local morning with the NHS followed by a trundle to London…

Yesterday I had a 2 part day……the first was with my local NHS Trust promoting research and then I had to trundle straight after down to London, as I’m with Dentists on Thursday…… 🙄……

So my friend Cathryn Hart from the research team picked me up at 8am and helped me load my book filled big suitcase into a her car and we trundle towards the Trust Headquarters…..there’s been some lovely skies in a morning and this one was no exception…..

We arrived at the venue and the team were already setting up..Cathryn’s research team stars are one of the most organised teams I know……..but then they have a wonderful manager in Cathryn…..every team is only as good as the manager and the culture that exists…

People began to arrive…..all sort of specialties were represented, psychologists, Occupational Therapists, junior docs…..and many more….

I sat on a table with people who were talking about Christmas 🎄🎄…….how someone had bought a chocolate orange to go into her little ones stocking and was so far on her third one as she kept eating them on evenings when nothing but chocolate would do 😂🤣……..All things advent calendar were discussed….so it started off with everything Christmas and just up my street…….how the simple things are often the best presents…….one persons little one had asked for a sachet of Macdonald’s Tomato sauce 😳 and lemon hand wipes you get in some restaurants 🤣😂……….perfect…….

Emma Wolverson reminded me of Hull Uni online Dementia Masters course – all the course is online which means that people with massively busy lives and in full time work can also do the Masters degree. All their lectures are done on line too so people can be in the most random places. One person was even in the hairdressers having her hair coloured but because it was on line it didn’t matter and she couldn’t have done it any other way…….

Anyway back to the business of the day and promoting NHS staff to promote research in their day jobs….

They started with a lovely cartoon on screen which had been drawn by a research participant….

Because research really does change lives…….

Cathryn started off with the housekeeping and welcoming everyone. The programme was really varied simply to give people a flavour of how simple it is to get involved in research. ‘Demystifying Research” said Cathryn……

She then showed a video celebrating 12 months in the life of the research team…..”Continuing to change lives”…”Research is not just about testing new drugs”

Cathryn apologised for the self indulgent video, but there was no apology needed as it showed their success. We don’t celebrate success often enough…..they should be very proud of what they’ve achieved….they’ve made a huge difference to me…….

The next speaker was Carolyn Scott a forensic psychologist speaking about being a Principle Investigator and what if involved

….she spoke of TIME being the biggest issue as a clinician. Sometimes you feel like you’re drowning with the day too day workload so how could you possibly make time for research as well….? But then an opportunity arose on a hot topic in their area and they thought why not, as it was such an important area to research…if the passion is there and the desire to make a change is there then anything is possible….and the Humber research team made it feel straightforward even during the difficult times, which always happens in research…..I liked her slides as they were straight forward and simple and fun….

As a Principal Investigator, “It wasn’t as scary as I thought”

Alison , an OT from Hull Memory clinic and Maister Lodge spoke next about delivering an intervention in practice…

Social research was new to her as she liked data crunching (an unusual breed!)…😂

She then started to think differently and started asking ‘How useful’ is what we do, the interventions we provide?. She was part of the VALID study (Valuing Active Life in Dementia), she ‘s also involved in the Pathfinder study (looking at talking therapies for people with dementia who also have depression) and is now the Principla Investigator for the PRIDE study.

She spoke of why she does all this in research – because it gives her a bigger overview of her work. It’s good for her personal development and research gives an added bonus to her career as an Occupational Therapist. The Humber Trust supports staff hugely who are involved in research and being involved as an employee supports the Trust values of Caring, Learning and Growing.

“I still get to be a clinician but I’m learning the extra skills of a researcher and more importantly I’m making a difference” It’s a win win….”

Emma from the research team then told everyone about the day in the life of a Research Assistsnt …..she’s been with the team for 3 years and is one of the team that has visited me at home…the team are all made up of graduates from a variety of background including Psychology, nursing and social work.

They work on many studies at any one time they they have to be good at juggling and very flexible…🥰

Their priority when visiting someone for the first time is simply to make them feel at ease and get to know them….wonderful and they all have smiley faces so even more perfect.

Before break a Junior Doctor had videod her talk as she couldn’t be at the event. It was all about her involvement as a Principal Investigator in a study – it helped her develop her leadership skills and it allay her fears of research as Cathryns Research Team were there when she needed them.

Tea break time and a mince pie……..🎄

Next up was me…and the team had made up a lovely slide for me to have in the background…

….part of what I said was:

“Maybe some of you have been diagnosed with a condition you weren’t expecting or someone close to you. It can be devastating not only for you but all those around you. We’re not the only ones to get a diagnosis. You trawl the internet for clues, for help for advice, we all do it. But what do you do if that diagnosis is a life limiting condition? What do you do if that disease has no cure. Where do you look then?”

Dr Soraya Mayet was up next talking about Telemedicine in Addictions…..Opioid addiction ..they wanted to look at ways in improving attendance at 3 monthly reviews by using Telemediicine.

The point of it is to overcome geographical barriers and increase access to healthcare but there’s been little research done on Addiction. Our local area area is 900 square miles and people often have to travel huge distances to attend reviews so Telemedicine may overcome this. Fascinating insight into the region’s Opioid addiction, the difficulties to overcome and solutions ………at the end of the trial they’re asking all involved, participants and the professionals what worked and what didn’t.

Emma Wolverson was last to speak about Caregivers Pro. The aim was to design a website for people with dementia and their supporters. The study came to an end earlier this year was Emma was here to show “you can survive’………they didn’t get the findings they were expecting but they learnt so much more.

Web sites that currently exist give support to Carers so they wanted this one to include people with dementia. They wanted ways to provide peer support when people were isolated. When are people ready to step through that door for social support? The focus groups showed how they wanted a ‘monitored’ website and kept up to date. They also wanted to be shown how to use the website. It did lots of things but it also had a “newsfeed’ a bit like Facebook which provided people with the ability to post things.

They were given a tablet which only had the web site. They recruited 200 people

 

“People with dementia don’t use technology” was the barrier they kept meeting…….but once they recruited people they proved how ridiculous this statement was. They recruited some people who had never used the internet and they were able to learn……there was no difference in time of usage between carers and people with dementia.

Fantastic interesting findings from the study………especially the time people logged at. The peak time was between 9-10 in the evening. So filling a gap when professional might not be available. Those who used it more were people who had attended face to face training. They’d formed relationships face to face and kept up these friendships on line. So technology alone may not be the sole answer, but combining it with face to face can enhance and improve.

The outcome studies showed no improvement between those that used it and those that didn’t. BUT as Emma said we need to be better at measuring outcome measures in Dementia Research. It’s no good asking us “How have you been feeling in the last 2 week” because all we remember is now…..so it has shown how the debate over Outcome measuring in Dementia needs to be totally overhauled…….which can only be good for dementia research and probably other research.

Emma ended with a slide with apparently quotes from me which was nice

Time for London now…….

A Monday morning trundle to Durham……..

Yesterday saw me heading to Durham for a meeting with a project I seem to have been involved in for years……

After my wonderful weekend in paradise, all I wanted to do was stay snug…..and all I wanted to do was hibernate for the week, but luckily I have a full 2 weeks ahead. Luckily because, although sitting doing nothing is wonderful with dementia in tow, it’s also very bad…..

‘Doing’ is so important. Travelling all over the country, I call my Suduko, as it keeps my brain exposed to different environments and different conversations, but it is exhausting and at the end of each day I describe myself like a Duracell bunny whose batteries have run out…..

I hate it when I see people just sitting in care homes…..doing nothing……believe me, there’s nothing more comforting than sat doing nothing with dementia…sat with your eyes closed with no stimulation is HEAVEN…no stimulation to distract or test the brain cells….just silence and calm in the head…..but I’m lucky enough to know how bad that is for me. Because if I sit for too long I can feel dementia start to seep into my brain and my body and it hugs you and you feel suddenly safe in its grasp. That’s why so many people with dementia want to just sit. But that’s dementia cruel way of giving you that false sense of security that doing nothing is good when the exact opposite is the truth….keeping your brain and body active is my way of keeping dementia at not and not letting it win…

Anyway, back to yesterday….it was a freezing sunny morning and I noticed the familiar taxi arrive early and park up to wait for me. I’d actually got everything ready the week before. I’d typed all my talks for the run up to Christmas the weekend before and I’m so glad I did. I was on a roll a week ago typing, whereas I felt empty of words this weekend.

We trundled towards Beverley, passing the sunlit Westwood….

The trains started off delayed….and the information boards had decided it was too cold to work, so no one knew what was going on…but they suddenly sprang to life telling us of the short delay…luckily I had a long wait in Doncaster so no panic necessary…….the train had not got the memo to clean the windows so no piccie of the sunlit Humber this morning 🙄

I’m part of the Advisory Group for a Durham project called “Co-Designing Dementia Care’

My friend from Bradford, Prof Jan Oyebode is part of the actual research group along with other lovely people. Richard from NHS North of England Commisioning support always books my tickets for me and looks after me well.

I had a long wait in Doncaster so took a trundle inside shopping centre and saw this perfect sign…

The train to Durham was also delayed but only by a few minutes. It seemed to be rammed with Christmas shoppers and a group were in my seat 🙈…..I ambled up and down looking for another window seat as I knew many would be getting off in York……and I found one…

I arrived in Durham to find Jan and Chiara waiting and we were joined by Nick and Barbara, and it turned out we’d all been on the same train! …..we all piled into the taxi and trundled towards the John Snow House, passing these lovely Christmassy reindeer languishing in the middle of the roundabout…

We arrived to find the rest of the people waiting including Mariri who had flown in from Switzerland! There was a mix of people, local Director of nursing, commissioner and researchers…..the mix of people is one thing I like about this project.

We started off by discussing the proposal of an Out of Hours care improvement pilot. They want to prevent avoidable admissions to hospital via community care. The pilot will take place in the North West of Durham. They worked out that around £4600 will be saved per admission. Although Nick cautioned against the use of the word ‘saving’…..for me…. More importantly people with dementia remain in their own home.

The pilot will also be exploring the ‘real need’ that exists in the middle of the night.

They would employ 3 healthcare assistants and I asked what extra training they would receive? The Director of Nursing said how there’s a potential for the Admiral nurses to play a support role here.

By only avoiding 8 admissions, this would pay for the intervention so any more would be a bonus.

The next steps are taking it to the CCG (commissioners) to hear their thoughts…….

The next item was linked to the first and it was around Emergency Healthcare Plans.

They are documents to help communication in an emergency for the individual to ensure timely access to the right treatment and access……..

So they’ve done an audit of 50 plans to see if they’re completed correctly and then whether they actually work in practice….Gary Fry performed some interviews with a range of people including medics and carers . Most of the forms had been completed on transition to care homes……..and had generally been thoroughly completed.

Like every bit of paperwork stating our needs and wants…..they can often be cast aside and ignored or forgotten…..😔

We then went backwards on the agenda to Chiara on Project 1 intervention. A recognition of unmet need of information (usually of local services) for people with dementia and their supporters.

A working group suggested a check list, one that isn’t necessarily accessed but it needs to exist. From June this year, CPN’s (Community Psychiatric Nurses) have been handing out this leaflet. Ethics were then asked if they could interview people asking what they thought about the leaflet and they’ve only just got ethics approval so can now start interviewing people.

So the next step is to start evaluating the use of the leaflet….I said they should ask if people found anything new from the leaflet. They might have known something existed and the leaflet provided the contact details, but did they find anything new they didn’t know about. And I also mentioned the lack of financial support detail e.g. council tax. Goes back to my saying of ‘We don’t know what we don’t know”

But as Richard said, small comments like that can lead to the leaflet being updated regularly as it’s a living document.

Area 3 was next up after a short break……”The Dementia Reminder System”……….

At the workshop, supporters said how they were inundated with information at point of diagnosis. So they decided how a ‘reminder’ would appear every 6 months. The Gp practice will pull a list every 6 months of those patients with a dementia diagnosis and a letter and leaflet will be sent to each person.

The researchers will ask the practice managers if this happens and whether there were any issues. The local ethics committee has refused the researchers access to the people direct. So the researchers have to rely on the people contacting them, which isn’t good, but is out of the hands of the researchers – they have no control over anything.

I suggested adding a smiley photo to the covering letter…..

Dissemination……This has been a project which has lasted 5 years…..the whole point of this project was to work with stakeholders (Commisioners) to provide better dementia care. Jan was asking where we needed to diseminate…..locally they could hold a workshop with all stakeholders who have been involved, which could bring together the people with the dementia, carers along with commissioners and Healthcare staff.

It may have been 5 years since all this Action Research  started but this is an amazingly long time in Commisioner world but researchers always find different things happen along the way that change the aims and directions…..for example it was originally ‘Co-design’ in the title but it’s actually been ‘Co-creation’…..co-creation of knowledge design………

It’s enabled us to “Learn what we think is not what people want” said the Director of Nursing…..a nice way to end……..as my brain was shutting down …..

I do love Durham and can’t believe I didn’t take piccies of the actual meeting 🙈 only outside…

P.s….we got to the station to find rail chaos……but the chaos that followed and trundles in taxis and coaches deserves a blog all of it own tomorrow………🙈

The Power of Working Together….

A long blog, mainly for me as I found it all so fascinating and wanted to remember as much as possible…….

 After the eventful, but also beautiful arrival in Edinburgh on Sunday

…Monday morning arrived.

Linn Sandberg, a Swedish researcher, along with Richard Ward from Sterling Uni had been planning everything and the workshop is funded by a grant from a Swedish funding agency. They’d arranged for anyone who wanted to, to meet in the foyer of the hotel, to walk to the venue together – always a good move….

So after breakfast I headed downstairs to find others waiting for the trundle up the hill with Linn…..it was a beautiful morning and who should jump out of the taxi once we arrived but Agnes….perfect timing and I was able to give Agnes the lanyard I’d picked up for her

After a cuppa and catch up we made our way up to the room and Richard Ward started us off……

The audience was made up of phd students, lecturers, research associates, sociologists, social worker, literature student  and researchers from Sweden, Amsterdam and Russia…..WOW!

All hear to be involved and learn about post colonial representation of age and ageing approach to dementia……

Richard started off, saying he and Linn were given a small pot of money to kick start the network. They held a workshop and have since tried to establish an on line presence – the link being at the bottom of this blog…..

From a dementia point of view dementia, there’s an emergence  of a new generation of activists amongst people with dementia, supporting each other but also questioning the the political status quo. So we’re here to talk about how researchers and people with dementia can come together and support activism.  Richard meantioned how the people present often felt as though they didn’t quite belong at many Alzheimers conferences because of their emphasis and viewpoint and hoped this network would provide them with a ‘home’.

It won’t be a meaningful network unless people with dementia feel it’s relevant. It provides excitement for research and funding.

He also said how activism and networks of people with dementia are also responsible to ensure they’re multicultural, they they don’t discriminate – a very good point! We can’t say we’re discriminated against if we discriminate ourselves….

Life Changes Trust, here in Scotland, are instigating a school of Activism for people with dementia and a forum for policy and practice for people with dementia.

Linn spoke next and gave a brief background re the last workshop….

The drive has been to engage with critical movements, feminist , activists, and bringing out conversations in many arenas who have similar parallels…neuro diversity….many different neurological problems have similar issues.

Critically interrogating concepts of citizenship and personhood. What are we not talking about in Dementia studies – what’s being put aside?

We had a great discussion about learning disabilities, autism and disablilty movement…..and how dementia fits, or doesn’t fit into these movements…….

Andrea spoke of the fact there are still so many people that we’re not hearing from – those living in poverty, those with mental health issues and dementia, and other diverse groups…….and we have to respect that some don’t want to speak out said Agnes. For some groups, conversations happen over a cuppa tea….and these conversations are often more meaningful than at formal meetings…….

After a break next up was phd students giving a update on their project……each had 7 Minutes

The first student spoke of death and dying at the margins – her study is in Amsterdam but also in a rural area in south Netherlands.– she found some welcoming the end of life and how some wanted to hasten death

Euthanasia – people were very willing to talk about euthanasia. Me and Agnes spoke about the medical world making decisions for us. It’s almost a moral dilemma because we have to make that decision while we’re able.

They kept mentioning, ‘Queer Studies’ which I’d not heard of before and sounded offensive,  but it simply means sexual diversity studies……

Next up was the student from Russia – Nursing homes are the most stigmatised place for ageing in Russia. She is in the first year – and is working in various nursing homes in various regions. There’s a larger geriatric movement now developing in Russia and are being trained to introduce western ideas

. It’s still in the early stages and in a chaotic state especially when talking about dementia.

In Russia it’s sounds like the culture in Italy as families are reluctant to allow their loved outside to be involved in anything due to shame.

Last year the official numbers said there are only 800,000 people in Russia diagnosed but if the stigma is such, then it’s not surprising…..relatives don’t take their relatives to the doctor for diagnosis as they believe it’s a natural part of ageing.

The third was Emily, an English Literature student from Leeds. Her study was on Post colonial representation of ageing in film and literature written in the English language. …..challenging and romatiscing the concept of ageing. She looked at  gendered and racialised structure of care in the Caribbean ……and in New Zealand. Dementia is one chapter in her thesis and is just starting it. There was a discussion of the meaning of post colonialism…

Older people and people with dementia  are ‘othered’ in post colonial studies……is this good or simply creating another label?

She spoke of the bi health system that exists in New Zealand – one fro white settlers and the other the Maori Health system – soooooo fascinating……..

Next up was a second year student, Mah, from the Arts and Craft background….…….hers is a qualitative psychology study to investigate the loop experience of daughters looking after mothers with dementia……..she filmed mothers and daughters doing an activity together……including her own mother and herself…..and she showed us part of her film of her mother and herself sewing and chatting together…..she then did semi structure interviews as well as filming the activity….they then interviewed the daughter and they watched the video together and asked if they noticed anything striking or something they hadn’t noticed before. They often slipped into the carers role and forget, that the mum can be the teacher again through crafting…..it’s all about the relationship between mother and daughter and allowing a crafting activity to establish previous roles………again so difficult to find participants…

Mary next,from Scotland.  finishing her second year, her background is social work. She found those from black and ethnic minorities communities were finding it hard to find care in the care system.

So she’s exploring the black and minority communities accessing direct payment system.  They have been marginalised and oppressed when trying to access services. There’s a lot of research being done on the basics which is why she chose to research the Direct Payment system.

She also is interviewing social working involved in direct payment, carers who might believe need is one thing and people with dementia who might see their need as something different.

Mary is having real trouble finding people in Scotland from black and minority communities. Me and Agnes both said how this should form an important part of her findings..

James, our final student……his background, always had dementia in the family so his phd was based in the Midlands…..but again found trouble recruiting. He asked them who they considered the most important person in their lives. Academically he’s a Psychologist. He found that typically one person became the main carer. So he was interested in why, in a large family, does one person become the ‘carer’……he was interested in unpacking the family dynamics and peoples responses and tensions within the family. Many tensions were fuelled by the lack of services available to access. In almost all cases diagnosis was sought by the carer rather than the person with dementia and sometimes against their wishes.

What a diverse and fascinating range of phd studies……

After lunch we heard from Eman from the Central Scotland equality council. The charity recently decided to take on dementia as one of the countries very unrepresented conditions. They champion rights for people with dementia and carers but found it very difficult with barriers at every corner. “We don’t have people with dementia in our community”………

They questioned stake holders and asked if they’d thought of considering redesigning their services…….needless to say they hadn’t but at least they’re trying to bridge the gap. The direct approach didn’t work in finding people with dementia because people have a negative idea about services. A one size fits all service does not work with dementia……other people think they know best about individual needs…..for example they might think some people need an interpreter, but don’t think about the cultural sensitivity of that language……

Megan then spoke about an LGBT project being funded by Life Changes Trust…..my batteries were running low, and I havn’t done my bit yet…good job it’s all written down 🙄

Such a shame my fingers were losing the thread as it was another fascinating insight into dementia in the LGBT community….there was also bagpipes playing outside so my head was hearing everything and getting in a muddle…..🙈…. I glanced at Agnes and noticed her eyes closed as well, so I didn’t feel too bad…….

Agnes was up next …….so I forced myself to wake up a tad…….

saying how when she diagnosed there was no DEEP network, no dementia diaries, no Twitter and when you went to conferences it was all about the carers perspective  but over the time a group banded together and together gatecrashed events.😂 Behind the scene there was this movement developing, ……although we didn’t realise it at the time….she spoke of the emergence of Kate Swaffer and the Dementia Alliance Interational group being born….Agnes felt a lone voice and she found everyone talking about memory and her biggest challenge wasn’t memory but sensory challenges.

She spoke of us being ‘done to’…..but then the group of people with dementia started to talk behind closed doors about death, challenges and all things other people weren’t ready to hear.

“ People with dementia want partnership and to be treated as equal…….”

“It’s exciting times as people with dementia want to be in control of the lives and their death”

I then had to follow Agnes 😳…..and part of what I said was:

“In my humble opinion activism comes in all shapes and forms, taking on many guises, some outspoken in a public forum, some campaigning tirelessly,  others seeping into the very nature of people minds and thoughts to bring about change. All are a type of activism.”

We both spoke about the work we’re doing with with the Pioneers in Dementia Enquirers and It was then opened up for questions of which there were many including how we cope with professional criticism….with being taken advantage of by researchers and many more interesting ones……….

You can read this interesting and enlightening article by Linn Sandberg and Richard Ward from Sterling Uni here:

https://criticalgerontology.com/calling-for-a-more-critical-dementia-studies-criticaldementia-network/

And I just love the piccie that appears at the head of the article

Another Trundle…..more learning…..

So after a day of celebrations on Monday at Bradford Uni, yesterday found me trundling to York Uni to hear the findings of another study that was coming to an end. This one was of particular interest to me as it was about post diagnostic support in the form of a course – but a course designed and delivered by professionals……had it been a success?

The dully grey day of Monday had been transformed into the blue sunny skies of Tuesday….it was a slightly later start so I had time to catch my breathe before venturing out in the taxi at 09.40

They’d offered a car to drive me to York, but I do like my trundle on the bus and the bus costs me nothing so made sense. However, although York is only 20 miles away it’s a nuisance to travel back in time to get the last village bus, so their offer of a car back had been  gratefully accepted….

The taxi man checked with me that I didn’t want to go to the station 😂…..as this one had never taken me to the bus station before. The Westwood looked glorious in the sunshine but sadder for the absence of the town cows as I assume they’ve all gone to market now….im glad I don’t eat meat……🙈

Jessica, the Trial manager, was meeting me at the station and sharing a taxi to the uni. The blue skies of home had disappeared once I reached York, to be replaced by the a sad grey threatening rain…. There were also roadworks that brought us to a halt and I ended up being late and rushing through town …..but just enough time to snap a piccie of the flooded Ouse by my whirlpool bridge…(I mention the whirlpool in my book)

…arriving at the station puffed out but Jessica was waiting patiently….

The room started to fill up with familiar and unfamiliar faces, so we went round the table and  introduced ourselves as everyone involved in the study was here this time. I’m used to be part of the Trial Steering group, but all the different groups were there today…..

The first part of the meeting was all statistical data and graphs but Jessica or Zoe had gone through each page and written me a post it note explaining what each meant 👍⭐️

We went through the baseline characteristic data. There were 28 intervention groups. Half the participants received the Journey through dementia sessions and half didn’t – they simply carried on with their usual care….

After participants had attended the sessions they were then revisited after 8 months and 12 months.

Now obviously the data hasn’t been made public yet so I’m not allowed to type about the outcomes. I kept typing/deleting/typing/deleting 🤣 It’s embargoed until a December event….but it was fascinating listening to the statistical analysis and seeing what they measure and how…..me thinks they have to be a very special breed of person to be a statistician….🙄

We the went through the cost effectiveness analysis of Journey through Dementia intervention. So this was the health economists data…….looking at cost of training, cost of delivering the intervention etc…..The cost of the training – cost for trainers, admin costs, overall, staff receiving training….. ….again, fascinating seeing the potential cost of running such a course.

We next heard about the qualitative part of the study – for me the good bit as it’s more about what participants thought……  they selected 4 sites to carry out observations and interviews…..talking to people often gives more in depth information than the information gathered from forms…..this gains a more holistic view…

Once again, fascinating insights but not unsurprising to me, yet seemed to be to some of the group present….

The thoughts of the trainers were interested…..the expectations they had on participants and how they thought the delivery went….

Gail Mountain, Chief Investigator, is a huge advocate of co-production and a wonderful person in wanting to include people with dementia. I can’t wait to reveal the finding as I have much to say and many thoughts……

We all agreed that the current measuring of success for people with dementia needs a revisit. It’s no good asking people about the last month or the last week as we simply can’t remember…..so hopefully someone will design a new model more appropriate for people with dementia.

As I said, the findings are being published at an event in December. Participants will be invited as well as professionals. They also intend to send participants the findings as well and are working on the design of that – and yes, they will involve people with dementia in the design…….so

Watch this space!

At least the fluffy blue sky had returned as I trundled back home after another exhausting day trying to take in information…..

 

A celebration of success……..

After a weekend of nothingness following a chaotic week last week, I started off this mega busy week in Bradford yesterday …..very long blog but sooo much to say…….🙄

We were there to celebrate the incredible hard work of the last 3 years of Dr Sahdia Parveen and her amazingly, revealing and successful study of Caregiving Hope. This study was looking at how willing and prepared people are and obliged they feel to care for those closest to them when diagnosed with dementia……

Sahdia’s success has come about through her hard work, energy and being mega organised. We’ve been with her all the way as Alzheimers Society Research Network Monitors – Me, Sandra and Htay have been with Sahdia for the whole study so how wonderful to share the end event with her as well…..

Because I’d had such a busy week last week I was late sorting out stuff for this week. So Sunday morning I suddenly had a panic as the main admin people at Bradford had booked me the wrong train ticket. I’d asked for an ‘Anytime Short Journey’ ticket and they’d booked me an ‘Off Peak’…😳😳😳….. I needed to travel before off peak time. When Sahdia contacted them Sunday they implied the ticket would be fine – I knew it wouldn’t..and it wasn’t……so they cost Sahdia far more from her budget than they needed. That’s why I always like to book my own, but this time they insisted for some reason……🙈

Anyway, the day started off well with the most glorious 30 mins sunrise….

Both the taxi man and me were just mesmerised……

30 minutes of glorious heaven went out with the blink of an eye and turned to dull grey raininess before my eyes………for those that didn’t look out they missed a wondrous sight…

Sandra was meeting me at Bradford station and we txt each other updates on our respective journeys…..having met, we trundled up the steep hill to the Uni to find Sahdia had everything all ready!! She’d been up since 5am, such was her excitement for her big day…we were leading the workshops in the afternoon. My one was “Living with Dementia” and Prof Jan would help and transcribe for me……

Then suddenly……the fire alarm went off 😳🤯 ……..and I just panicked, as I do, not knowing what to do, where to go…….we saw people in orange jackets waving at us outside…..so decided we’d better leave the building 😂……it was a test but a timed test…..we failed miserably….

The lovely Ripaljeet joined us……followed by Htay….

The room began to fill up…….with carers, who’d been part of the project and professionals and some who had a dual role…… everyone had been asked if they minded their photos being taken and all agreed…..

Prof Jan started off the event….welcoming everyone and saying how the next stage is for our thinking today about what 3 interventions would make a difference for Carers……

She said she was the ‘warm up act’ 😂…….

Jan spoke about the Centre for applied studies in Dementia Studies…..they not only do research but work with Gp’s, Care Homes, Hospices and a whole range of other activities…..

“ Dementia is a family affair” – Jan said…..family members provide a huge part as opposed to services that in comparison offer little….

Tom Kitwood left an amazing legacy to Bradford ……..Tom’s theory was one of relationships……

Sahdia’s project has been funded by the Alzheimers Society and Siobhan was here today representing the society…..Sahdia thanked all of us who have worked with her on the project as studies don’t come about from one persons input…..

Amazingly ethics won’t allow her to name us to the audience 🙈……

Sahdia has been a carer herself and health professionals often assume that carers are willing and prepared to provide care…..South Asians often ‘feel’ obligated’ to look after their own….but are they willing and are they prepared?  do they know how to access services and provide practical and emotional support.? Those willing may not know how to care.

This was the whole aim of the study…..is there a link between between, obligation willingness and preparedness to the carers outcomes?

They aimed to recruite over 300 but they recruited over 700, which was astounding…..the numbers were almost equal between white British and south Asian carers….

White British perceived they had less family support than south Asian but when it was measured, it was almost the same….south Asian felt more obliged, white British felt more willing….interesting finding…….

They gave the carers cameras to take photos of what helped them care….and at what point..

There is no word for dementia in the South Asian community and so the study referred to it as memory problems, but then the carers struggled to understand the different issues that affected their loved one that also come with dementia….

The carers took amazing photos

She asked why one carer painted their door yellow and red – it was to enable the person with dementia to go out on their own and know which was their house when they came back. When asked how they were coping, they would say they weren’t, but the photos allowed their coping strategies to shine out without them even realising how inventive they were being…..

The preparedness for decisions around residential care was fascinating between white British and and British south Asian carers…..

White British expected the person to move into a care home, whereas for the British south Asian carers it was far more complex – once they’d got over the cultural stigma associated with moving to a care home, it proved difficult to find care homes that adequately recognised their cultural needs, language, etc…..

Carers often say..’never, never will I allow them to go into a care home’…..but once difficulties arose and dementia progressed, views changed…..

Sahdia also ran alongside the main study, a study for future carers….those who weren’t current carers….the method was through a one off online survey and focus groups….they received over 1200 people instead of their low target of a couple of hundred….amazing…..more fascinating findings……..many had unrealistic expectations and thought there were wonderful services already in place……😳…..

Older members of the South Asian community were prepared to go into care homes, but the younger age group said ‘no way’ but had unrealistic expectations of what ‘caring’ entailed…

I could have written soooooo much more, so much came out of the study……..but this blog would have had to be several blogs as it would have been so long…..and I simply couldn’t type quick enough!!

Preparedness seems to be the key to carers outcomes…..so preparedness is what Sahdia will focus on next. What should be in place to enable carers to care and that’s where our workshops will come in this afternoon….to come up with the top 3 topics which would enable people to feel prepared to care

The questions from the audience followed…..including the existence of South Asian Care Homes. No one knew of any, but one person said how they didn’t necessarily need their own homes, they needed to be accepted in existing homes with knowleable staff in the cultural  differences…

It was then our turn as Research Network monitors to give a brief talk about our role….as critical friends of Sahdia…..

Sandra joined the Network exactly at the same time as me. Sandra was followed by me and Htay – we all had different stories and different reasons for being there…..it’s personal stories that make the value of research come alive….one thing I said was:

“The academic brings their professional expertise, we bring our expert by experience expertise and together we make a winning formula for success.”

After lunch and much chat and meeting new people, we broke into workshops – 8 workshops that are going to create a support package for carers……

Me and Prof Jan were leading the ‘Living with Dementia’ table. So many things came out……the difficulty in getting diagnosis………the importance of talking to others……responsibility to be signposted….’we become compulsive liars’ to enable people with dementia to accept help, said one…..the pressure of being a carer…..of not knowing what they don’t know……the need for education in society and in healthcare professionals……

One person gave an example of her mum being excluded from the church committees when they knew she had dementia, which upset all of us…..they thought she was no longer capable……😔….I said they need to go to the church and explain how that exclusion was soooo wrong………and why…….

Why are we at the bottom of the pile for support and service…….? I said, We’re the easy option to be forgotten because we forget and carers are so busy caring they don’t have the energy……

Soo good Jan wrote notes as I hardly typed anything – that’s how good the conversation was and I had to concentrate……..we spoke for an hour and could have gone on for hours…

Each group feedback their finding……….I was defitely running on empty and my typing stopped…

But…….what am amazing day…….meeting amazing people once more……listening, sharing and laughing together …….the perfect combination…

Sahdia should be so proud of her study…..so proud of today…….and so proud of the informative magic book  published from the findings….

Why acceptance of social care need isn’t always a given…..

Yesterday I trundled to York Uni. I’m involved with a study being carried out by Mark Wilberforce, Senior Research Fellow at the Social Policy Research Unit. Some time he asked if I would be interested in working on his project around helping older people to engage with social care where dementia or a mental health needs made it quite difficult. Universities love their acronyms and so it will be called the ‘HOPES’ study (as a shorthand… Helping Older People Engage with Social care.)

Many people with dementia and mental health issues, quite understandably, can be reluctant to allow strangers into their house. Home carers can often see this as them not wanting help and dismiss their reluctance, reporting back that they didn’t want to accept their care – end of. These people are then left without the social care needed because no one looks into the reason why……until a crisis occurs😔 With resources and visits being short, training limited, time is often one thing the home carers lack to enable them to build up trust and a rapport. The easiest solution is for them to be classed as -refusing sevices……

The study aims to find out what makes Specialist Support Workers in Community Helath Teams effective in encouraging older adults to accept social care….

So a very wet night was followed by an equally soggy morning and a grey world greeted me. A misty murk hung over the Humber as we trundled by

As we trundled further down the line towards York, the rain became torrential, fields were flooded, happy dogs accompanied by bedraggled rain soaked owners, heads down and possibly walking a tad quicker than normal……🥴

I was heading to York with their notorious sirens and loud unbearable noises so had my hearing aids in situe..but then….a beep beep in my ear signalled the batteries needed changing 😳….first time that had happened…..and never occurred to me to carry spares…..🙈..so it will be an ear piercing time in York….🥴 Alarm immediately set to put spares in my bag when I get home…🙄

Mark had told me to get a taxi to the uni, to txt when I arrived, and he’d come and get me and I had a nice taxi driver and saw the floods continued with the River Ouse overflowing….

Mark met me as promised amidst Freshers week with people more lost than me!!😂🤣

Also there was playmate Maria Helena and husband David, along with Mark and Louise, (researcher)….
David told us about Maria Helena’s, who’s from Columbia, her time with dementia…how point of diagnosis is a very lose phrase as no one knows when dementia started….it was a wonderful story and one I could have listened to for ages…….love to hear peoples stories❤️…I realised I know the lovely couple from Minds and Voices!

Mark started off

And explained what the project was about and how we can influence and contribute to the project.

The point at which people need care is different for everyone.

So we’re looking at those in later life, with dementia and also those with mental health issues. The department of health has recently become the department of health and social care, but the joined up working is yet to materialise. Social care isn’t free so getting social care is challenging from the start.

“If only the help was offered in a way that recognised and adapted to the person living with dementia”

maybe it would be easier to accept. Imagine someone undressing you when you didn’t understand fully what was happening – you may lash out or refuse – I would! A care worker might see the person as ‘being challenging’, simply through lack of training, in how to manage these situations

The crisis can then happen when the loved ones can’t cope with caring and a state of neglect or poor living conditions appear……simply through lack of understanding from the start.

Other people shape our identity……the steotypical image fills peoples minds and we suddenly become ‘a person with dementia’ instead of a mother, a person who worked, etc etc.

Specialist support workers, employed by the NHS work in complex care, are supervised by professionals. But there’s no evidence as to how they help people to accept social care. People have to be referred by the Gp but once again, post code lottery exists. They’re not qualified and registered – if you think of teacher and teaching assistant, these are the assistant, but they’re a bit more than that as they don’t work alongside a professional. They don’t have a professional status though.

I’d never heard of them but as with many things, they have different names in different areas…….in Humber, for example, they are ‘Support time and recovery workers,’……no wonder we get confused…..

They help people who don’t want social care not to fear it – so that is where this research comes in….we need to find out what makes people happy to receive social care through the interaction of these specialists support workers.

We want to fill those blanks on the chart…

We’ll do this through interviews with people, home care providers, specialist support workers and also have focus groups with people who supervise support workers.

I asked does the system break down once the specialist worker overcomes the fear of the person, is the person transferred back into ordinary social care system and collapses once more? – this is what we want to find out. In theory there would be a handover but does a care worker listen and take notice or does it end up back to square one?

Me and David contributed with soooo many questions and suggestions…..it all started to get very exciting about us being involved with the ethics committee, with focus groups, interviews and evaluating data…..but that’s me getting carried away in the excitement….

Many research applications are pie in the sky, the ideal situation and I stressed the need to be flexible and getting this over to ethics. How, yes would would like to be involved in many ways but we have to be realistic and so have a reality check on involvement as well, which may change as the study progresses.

After lunch, Louise went into the approach process – and we were shown the information sheet to comment on ……..we preferred the one that was set out with pictures instead of just words….and I said how I love research but I hate getting the information sheet with so much detail…and I brought up the feeling left when the researcher disappears and we’re left with the endless sheets of paper, all official looking if words only – if it’s official looking and just with lots of writing we might worrry about what we’ve signed up for. If it was friendly with images we may feel less stressed.

Sooooo many good ideas, issues highlighted and suggestions given. Louise asked our advice for how to start the interview. I said setting the scene is the most important part of the meeting – a friendly person, establishing rapport is far more important than asking the questions straight away….

Another fabulous study to be involved in….. Maria Helena is at a later stage than me but her gentle husband, David, is wonderful with her. Maria Helena shared laughter and made her presence known and shared hugs and chatted, lapsing into her native Spanish. She told me off for calling her Maria – ‘Maria Helena’ she told me and quite right too! She kept hugging Louise and saying how wonderful she was. That was Maria Helena’s contribution – Louise would be carrying out the interviews and her warm friendly disposition appealed to Maria Helena. If she hadn’t had the right character she may not have got that response. …Just because people have lost full power to communicate, doen’t mean they can’t communicate, can’t contribute. Maria Helena communicated loads in HER way.
It was lovely having her there which made the group photo even more special

Us as experts by experience bring something extra to the table. The academic experience and the expert by experience partnership is one that can only make research better……

Final Day of Dementia Enquirers gathering…….

At the end of the session yesterday we said goodbye to Tom, David and Rosemary, our abler enablers, and also to Mahri and Hugh sadly, but we had 2 surprise tea guests in Reinhard Guss and Toby Williamson.

Before we met up with them we all had a welcome respite in our rooms – for some it was sleep, for others a stretch of their legs, to catching up with family or friends on the phone, for me it was silence, time to close my eyes simply to block out the world. My silent world of conversation on Twitter bringing me back to life…..

Then for our tea gathering – photo courtesy of Reinhard…..

Once again laughter and conversation dominated the time but sadly I had to be the first to leave again, Philly helping me to wobble across the darkening courtyard to my room.

Morning soon arrived and our final day began, although today was to be a half day before we all ventured home. Breakfast was a gentle affair before we all met in our final room – a reduced number but perfectly formed…..

We talked about how this 3 days had worked and we all said how if it had to be London it had to be St Katherines as it was an oasis in the centre of the chaos of London. It also meant the professionals could attend which added an added an extra dimension to the discussions……yesterday really wouldn’t have had the same impact without them…

We then spoke of future plans and the topics for the morning – The ‘Belonging’ project with Chris Clarke from Hull Uni. That feeling of ‘Belonging’ could increase through our Dementia Enquirers so we’re looking into whether this happens and how to measure it.

The second was due to happen on International Disability Day in December – a zoom meeting with Tom Shakespeare on Research being done by real people of all disabilities. The intention is learning what obstacles they’ve have to overcome and also share learning through our experiences..

The third was Dementia Congress and our session on Thursday 7th Nov morning.

Names and dates all sorted and allocated….

We then had a discussion about our needs when asked to speak at an event and we decided we would record a dementia diary all together, there and then….talking about what makes or breaks us when that email comes through and – how we feel when it goes wrong and ending with how it makes us feel when it goes right.

It’s not rocket science…..but it’s amazing how many people think we magically appear. DEEP and Innovations get it right every time and I feel safe in their hands as we all do. I never worry when I’m in their hands…..I never plan half as much when it’s them because there’s no need.

We spent the time before break reflecting on yesterday…….through recording a video

The first question Rachael asked us was ‘I feel like a Researcher’ – giving a score between 0-5 where 0 is no knowledge. I said 5 simply because I have such a passion for research. I may not have the knowledge but I have the passion.

We then spoke of David’s Oral History project and we all said how powerful and emotional that made us all feel. He didn’t question whether we could learn this new skill. His humour, his passion, his belief and his understanding made us feel as though we could.

We fed off each other’s positivity and concerns and the outcome of a video was pure magic. I said we were sat in a historic moment in time and, WOW, how amazing that felt……

After a cuppa tea….we then had our final session on ‘Belonging’……a measurement of belonging with advice from Chris Clarke of Hull Uni.

By being involved in a Deep Network project like Dementia Enquirers, will people gain a sense of belonging?…we need to find a way of measuring whether or not this is true ….

Again, Rachael asked us What does the word ‘belonging’ to DEEP mean to you?…..for me it was comfort…..many great contributions including safe, accepted and valued….I don’t trust many people, I trust my daughters and Stuart, as they’re my world, the only other person I trust 100 % is me as I won’t let myself down. But I trust DEEP implicitly not to let me down – they’re the only organsaition…..

We all gave out such personal comments and feelings because we felt safe and ‘belonged’ to each other. None of us felt this unique feeling of belonging related to time – we met through the tragedy of dementia – it was that one common denominator that had brought this family of ours together and given us that instant feeling of belonging. We would never have met if it hadn’t been for dementia. It was all very emotional for everyone. We spoke about the ingredients of ‘belonging’, why DEEP is so unique and special…..

The morning passed so quickly that lunchtime arrived and then it was time to go our own ways but not before a final piccie

To end this blog my quote of the day has to go to Dory:

“We’re all unique and wonderful but together we’re a Masterpiece” ❤️

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……

Heading to London ……….Day 1

After a lovely overnight stay in Leicester I arrived home mid evening to pack for the next trundle the following day to London. I’ve got a full diary now until the end of October and they all seem like a good idea at the time. But then November is quieter – I wish events could be spread themselves out a bit better 😂

I never know when it will be my last, like never knowing when the ‘last’ of anything will be, so, although I decline lots of offers, I do like to cram my diary,and suffer the consequences after🙄

On the way home from Leicester, I had a sudden panic of not knowing anything about the following day. I had a hunch it would all be waiting for me on my kitchen workshop, but couldn’t remember any detail of when and where I was meeting Rachael from Innovations. I knew my brain would have shut down by the time I got home so simply txt Rachael. She came back with the detail and I was a happy bunny. Whenever Innovations in Dementia are involved I never worry or plan as much, as I know they’ll look after us and sure enough, my pink file stuff was all sitting happily on the side when I got home……

Waffling again …🙄…..it was a very wet blustery day that greeted me…the only piccie I could get was a rain soaked window so I missed that one out….Piccie of my playmates later will make up for it…..

We were gathering for 3 days for a Dementia Enquirers Pioneers meeting at St Katherines in London. They’d tried to build in more travel and recovery time as it’s a very intense few days for our brains to cope with, but very pleasurable. I don’t think I’ve been to London for months 🤔….and definitely not since I got my hearing aids, so it’ll be interesting to see how the noise is…

Half way there and the skies brightened a tad…well the rain appeared to have stopped…

Rachael met me at Kings Cross along with Dory and then Philly and Tracey joined us and we all trundled in a taxi with a lovely cab driver who was entertained by our stories and laughter, especially about the 3 of us all being in yellow coats

My blog told me I’d been to St Katherines in the East End 3 times, but as the man showed us to our rooms through the maize of corridors and stairs, it felt unfamiliar. It didn’t feel right for some reason. I spent the next few minutes walking round in circles around the room, trying to settle myself – don’t know what was wrong with it….just didn’t feel right or friendly…🤔😔 not sure what’s going on….

We arranged to meet for a cuppa and catch up of the session at 4 so solitaire filled the gap and catching up on Twitterland….and once we were altogether the laughter began again…

We went over the last meetings. We were shown the little video we made talking about reviewing the research projects. You can view it here

https://www.dementiavoices.org.uk/dementia-enquirers/

The film shows the calm relaxed atmosphere we create and can work in with each other. We speak from the heart, and feel so calm and comfortable. We all agreed that it’s other people who make us feel uneasy but here we always feel calm with Innovations because we know everything will be ok, no matter what.

We went through each of the groups who have been awarded money to carry out their own research. Such fascinating projects – “Living alone versus living as a couple”
“Does class and ethnicity impact on the dementia pathway for the person with dementia”
Testing out accessible instruction videos for Alexa
To “how can public transport be improved” and many many more…..

It was lovely to see and be reminded of them all again.

Amidst the crashes of thunder, lightening and torrential rain falling outside, inside we were happy and relaxed. We were saying that this has never been done before…..people with dementia in the driving seat and so many professionals are watching and listening…..just to see whether it works…..well, so much time, effort and funding has been put into this project and the way we’re recording the progress will become an historic record for the future….how amazing to be part of it…❤️….to show what people with dementia CAN do……

Finally time for tea. Once again, laughter and conversation dominated this simple activity of eating but we were all fading, or at least I was….so instead of joining the evening sing song, I retired to bed and some silence…….

P.s…..my hearing aids have made London into a tolerable noise bubble instead of the crash bang wallop city of old…..wonderful……day 2 tomorrow…..