A Venture down to London…..

So yesterday I headed down to London…….once again, we’ve not been told not to travel and until we are I’m hoping it’s business as usual and yesterday was part that….morning on, afternoon cancelled…..but it would mean I would get a trundle and get home far earlier than I was expecting so every cloud……..Sooo many events being cancelled that I’m having to make the most of any still on…….obviously if I didn’t feel well, I wouldn’t put others at risk, but I felt fine, I don’t care about me getting it from others…

Someone kindly managed to get me a pocket size hand gel sanitizer so I was all armed to make everyone else feel happy….just to make you all fell happier, every time I think I used it I’ll put “(gel) in the blog 😂 A Gp on Twitter had even offered to send me some in the post! How kind was that ☺️

I was heading down to meet up with the lovely people from Young Dementia UK to discuss the Angela Project…….The blurb about it says…:

“The Angela Project is dedicated to Angela who was recently diagnosed with dementia at 51 years of age. She had symptoms for 3 years before getting a confirmed diagnosis. Many other people experience delays like Angela.

 Our Aim is to improve diagnosis and post-diagnostic support for younger people living with dementia and their caregivers”

 So a wonderful project, and I actually think I was a participant in one stage…🤔………

I’d been emailed from Tessa, who heads up Young Dementia UK, saying how it was fine not to attend if I was at all worried…….well, if they were going so was I 😂…….and as Tessa said after my response:

“I thought you might think like that……..”😂

Anyway, I woke to a beautiful light morning…

First time I’d noticed how early it was getting light! 6am and the sun was shining….how wonderful….Spring is on its way..

A lovely cheery taxi driver was early and said how she’s just sent her friend a txt, then realised how early it was 🙄 oooops….(gel)

The earlier train was also in the station.  I had to change at Doncaster, so I thought I might as well sit on Doncaster station for a bit longer so wobbled on(gel)…….I’d have an hours wait there instead of 15 minutes, but would trundle on a nicer train with ‘tinternet’ which would allow me to sort myself for the morning……

After all the recent dull grey rainy days it was lovely to see the sunshine again. It always makes me smile, Mr Blue sky setting you up for the day…..seems ages since I’ve trundled past the windmills and how beautiful they looked………can’t remember when I last went to London, must be a while…🤔

I’d had a debrief with my daughters about the trauma of the PIP assessment the day before and we all agreed there was nothing we could do now but wait. But it’s amazing how the thoughts of it flicker in and out of your head……😔

I was determined the day would be a nice day as I would be seeing such lovely people.

I arrived into a sunny Doncaster, got a cuppa (gel) and sat in the waiting room (gel), playing scrabble, winding my brain up for the day, and watching the people come and go…….(gel)

After an hour, which flew by, I boarded my train (gel) and arrived in London late as usual ….🙄 (gel gel gel )

So I was a little late but after a short tube ride (gel gel gel gel 🙄)still found time to take a piccie of the skyline…which I love around Aldgate….

I arrived at Dementia UK offices (gel) and found Tessa, Kate, Janet and Jan waiting for me……and a cuppa tea appeared…..we were soon joined by Hilda (CEO of Dementia UK and who kindly lets us use their offices) and Jackie….

Jan started…..I’d been least involved and was invited to tag along today to give my five penneth of views…..the project finshed at the end of December ….so now they’re busy producing academic papers…so we were here to discuss the next stage, collaborating to think about how we can turn findings into useful resources that can make a difference in practice…make a difference to the diagnosis process and the post diagnosis process….

This first leaflet is accessible and available for professionals and people affected by dementia…but it’s just the start as so much useful information came out of the Angela Project that we need to ensure it gets out into practice…you can download a copy via this link:

https://www.youngdementiauk.org/angela-project

We need to make sure it gets far and wide……so please have a look….Kate had it on her laptop, so I took a quick piccie…..

The ‘organiser extraordinaire’, Kate, has produced a check list for making sure the process runs smoothly….so we’re working on a promotion plan via the Young Dementia Research Network….

We were talking about the cost associated with providing hard copies free of charge and where that money would come from….dissemination and implementation is sooooo important in research and often neglected. But we’re wanting to make sure all the useful information collected IS disseminated and implemented ….

We need to be efficient as possible but time and resources are always limited and Young Dementia UK is very small but perfectly formed and so good at what they do….

We moved onto to discuss other resources other than the leaflet currently available……we want to produce a ‘living care plan’ or ‘living life support plan’ – don’t think we’ve got the name quite sorted yet….…..Clare Mason at Bradford has been consulting professional people, to see if they would use this living care plan or what would need to change – do they think it would be valuable, what would they like to see come out of the evidence that has come out of the Angela Project ? So for example, their local Bradford Dementia Strategy Group were very keen to trial it, made up of many different specialties………. But then also ask people living with Young Onset dementia too…of course!

I said it would interesting to see what professionals thought we needed as opposed to what people living with dementia say they need…..

We all said it had to be a flexible template to be adaptable for every individual….so we have to have a core range of essential elements…that can then be adapted for individual needs….

The experience through the clinic, is another step –  what matters most to people receiving a diagnosis…….?

It’s wanting to link a gold standard clinical diagnostic process along with a personal, ‘what matters to us’ during that process…it’s no good providing a step by step clinical process on diagnosis  if it doesn’t involve the holistic experience of the people being diagnosed. Is the environment right, is the right language used etc etc……

They’re also wanting to produce something for Commisioners ….so over the next 9 months there will be much activity…….very exciting times and the evidential outcomes of this project could make such a difference and change the whole experience of being diagnosed, and then post diagnostic care, which is very poor at the moment. However, during the research, some people did relate to having had a good experience. The areas they came from didn’t surprise any of us….so it’s harnessing these gold practices with “what matters to people going through that process’ – how magic would that be……

Lunch arrived (gel) and I found out that I misunderstood the length of the meeting …..there were people Skyping in after lunch but I had to leave as I’d booked my taxi in Beverley to pick me up from the 2.30 train 🙄………but it was sooooo good to get out and about on a train once more and down to London….

I realised on my way to the tube station that I’d not taken a piccie of all the lovely people🙈,,,so took a piccie of the blossom in the sunshine instead

I had to find a smiley face at Kings Cross station as I was originally booked on the 17.30 train. But the smiley face took me to the next train, warning me that they hadn’t been very co-operative lately 😳…. it was an earlier train so would have been cheaper and less crowded than my rush hour one….so why wouldn’t they in my little mind..?

 She waited with me, then the guard appeared. She explained my situation, I smiled my biggest smile and made sure my lanyard was on view. They couldn’t have been more lovely and helpful and I settled down on my earlier train to home (gel gel gel)………sometimes kindness costs nothing yet means so much……

A lovely trundle to be with lovely people….wonder when the next will be as 3 days have already been cancelled next week….🙈……

p.s did I use enough gel for everyone 🤔😂 especially my daughters…🙄

 

Second trundle of the week to York….

Yesterday I was back in York, this time at York University……..strange isn’t it as before dementia entered my life I’d never been inside a university ….now I’m in and out like a yo yo…! Never give up on yourself……..

Anyway, I opened my curtains to flakes of snow silently falling…..I love the silence of snow. Rain is heard loud and clear, but snow silently appears and has the double edge of beauty and hassle……

I checked my calendar for the time of the taxi and notice I’d scrawled 18.15 as the time they were picking me back up on my return journey…..this didn’t feel right. Luckily I checked my trains and it should have been 17.15 🙈….note to self to change when I get to the station…..confusion with numbers again 🙄

By the time the taxi driver waved at me from his car, the snow had stopped and then I had the treat of a trundle to the station with the driver who looks at life like me. He adores the detail of things and I listened to him talking about his love of driving and how he often takes to the minor roads just to see the gems of countryside that would be otherwise missed. He also spoke of the detail on buildings usually missed by passerby in a hurry to get somewhere. He mentioned the devil high up on a building just outside the north bar in Beverley, which I see from the upstairs of the bus, but how many locals know it’s there?…..never forget to look up as you miss so much detail, so much interesting, unusual beauty……

It only takes us about 12 minutes to get to the station but it went far too quickly today and I could have chatted for longer…..but his next fare would be waiting and my train was due, but a lovely way to start the day…

I was trundling to York to meet up with academics Louise and Mark along with playmate Maria Helena and hubby David. We were helping with their study and this meeting was all around planning for the interview stage, our role and the questions.

It was this study that had allowed me to attend my first ethics panel and I was delighted that the panel decided we could have ethical approval, so finally we could get started.

The train was direct from Beverley so no changes and the Humber was showing signs of the high tides of recent weeks

The damage from all the recent deluge of rain and storms clearly seen along the route especially as we approached York….

but today, we had sunshine today, sunshine mixed with cloudy skies, snow falling in the distance, the haziness being the giveaway…a real mix of weather as company…..

I arrived in York and took a sneaky trundle to the  bridge to see how the floods were doing….still high but lower than they were Monday

My shadow on the bridge…

I love the fact that Maria Helena has been given a chance to contribute as she is in the later stages than myself, but her contribution is just as valuable but shown in a different way, through emotion, through smiles and grimaces, through boredom and engagement.  But sadly, when I got there, David told me that Maria Helena  now lives in a nursing home, which David said was a blessing really…..how life can change overnight …..

So after hugs from David, Mark Louise and Sue, an ex mental health nurse who has been involved remotely before, we started..

Mark started off  by talking about our ethics experience. But then he mentioned how ethics check on the ethical process of the research but rarely comment on the ethics of practice out there already….interesting….

The project is called: HOPES – “Helping Older People to engage in Social Care” – academics do like their acronyms that I can never remember so had to ask…🙄😂

Mark went through the agenda – filling us in  in on the workshops they’d held – they’d been recommended not to include us at that stage as Health care workers might be reluctant to be open and honest if we were in the room.

We then had to decide the interview format.

So we’re talking about social care and the everyday needs that people have in their lives – the practicalities   of personal care, support around the home, etc.

Sometimes a persons dementia or mental health can be a factor in not wanting to receive help, which becomes a problem for the person themselves, possibly making them more vulnerable. On the other side of the coin is the care worker finding the situation difficult to cope with.If the help is offered in a way that recognised and adapted to the person then maybe more would accept it.

So we’re looking at ‘specialist support workers’ who are very experienced in complex care. We want to know what they do differently, what have they learnt that can be shared with those less experienced maybe.

The trouble is ‘specialist support workers’ are not recognised as ‘professionals’. So they have ‘softer skills’ – the interpersonal ones. The ones we’re working with are supervised by professionals, so we’re not talking about people who simply provide care in the home and have 15 minutes before they disappear. They all have experience of helping people with dementia or mental health needs.

Not every area has these ‘specialist’ support workers….post code lottery once more…

So basically Marks slide says it all about the project

What makes people for from unwilling wo happy to accept social care..?

So the bit in between is ‘What does the specialist support worker do to make this happen’ – that’s what we want to find out…

They had no trouble recruiting for the workshop as there’s been so much interest in the project and they had support workers from the NHS and private organisations, which was wonderful to hear.

They gave the attendees 3 case studies, one where the care worker process had broken down, one of someone living alone and the other a Bangladeshi family. So they asked the specialists to say what they would do, breaking it down into 5 stages – before they go out to see them, meeting them, establishing rapport, introducing social care and handing over.

The group were very open about techniques they use. I said how that in itself was interesting as they’re not bound by rules and regulations of a professional body so they almost come up with their own rules and techniques. Even down to whether to wear a uniform or not. What’s the least threatening approach to this person. I used to use this thought many moons ago when I interviewed people in their own home. I would wear a suit in some areas and purposely not wear one in others, just to make people feel comfortable…

The support workers are trying to avoid people having something serious happen to the person, all others avenues have been tried and they’re brought in as a last resort before the safe guarding laws take over…

Building up a rapport was the first key respectful task they had. They all apparently seemed acutely sensitive to the needs of the people they were working with.

It felt like there may be lots of revolving doors of people coming back through the system when the system breaks down again at hand over back to basic care workers once they’ve done the hard work – built up a rapport, engaged them back into the social care and them introduced them to normal care workers.

Time for a lovely chatty lunch and then started again.

Between now and August we’re going to be interviewing support workers, their supervisors and people who have experience of receiving social care. Me and David would be involved in this if people allowed. So we talked about this process and the bits of information we wanted to get out of the conversation….

We went through the types of questions we might ask, the way we might ask them. Very interesting and the thoughts of me and David were very much taken on board. Fascinating process – who would have thought coming up with questions was so exhausting to get it right and to get the appropriate questions asked in the right way…..🙄

Four hours passed so quickly and we ran out of time !

Sooooo many questions raised….soooo fascinating…..I see these people as ‘trouble shooters’…..trying to sort a complex issue and then handing over before going to the next person in difficulty. Underpaid and under appreciated for the value of the work they do.

There is very little training for these people – basic care work training is not high enough, but nurse training is too high however there’s nothing in between, they devise their own ways….

Really looking forward to being involved with interviewing……..

One last sneaky piccie I took in the morning in the Museum Gardens …….’a host of golden daffodils’ as I cant believe I didn’t tak a piccie of us all…🙈🙄

 

Could students raise my spirits……..

After the trauma of Monday, I needed something to lift my spirits yesterday and if anyone could do it, it was students…….I don’t normally let things like this dwell in my head but the PIP process isn’t just a one day event…it affects you from the moment that brown envelope drops through the letterbox. That sinking feeling of doom and trauma….but today is another day and I was so hoping the students smile at Bradford University would bring a smile to my face….

A lovely sky welcomed me as I stood looking out of my morning window…

I was heading for Bradford to the Doctoral Training Centre (DCT)  to have an update from all the Phd students that I’d been following from their first day. The DCT is one of the things the Alzheimer’s Society have got right. The students are funded by them and I was there as a Research Network Monitor today.

I’d be seeing the lovely Sandra and Barbara along with other wonderful people at Bradford so my hopes were high for a happy day.

I saw the taxi driver slowly pass my house and guessed it must be someone new, well he was to me. He wasn’t the talkative type and insisted he’d been with them a year so we trundled along in silence. I often wonder if people are feeling sad, shy, or just don’t like to talk…..no one knows what is happening in peoples lives to make them as they are in that moment.

Once at the station, I checked with my smiley face at the taxi office, that I’d booked a taxi home and then joined the morning commenters into Hull…I’d set alerts from the train company so that every time I travel, they send me a txt to tell me what platform and whether there’s any problems…..wonderfully helpful.

The first train was on time into Hull and we now have a direct train from Hull to Bradford, so I don’t have to change at Leeds! I know it’s probably not, but feels like a long time since I passed the Humber in sunshine…

Sandra was due to pick up my train in Leeds and had txt along the way. Me thinks it must be half term as the carriage was full of excited children….well 4…but sounded like a whole carriage full 😳😂…so I went into my own world of playing solitaire…..

Leeds came, the train emptied and I saw Sandra wave at me from the other end……after hugs and a catch up we’d arrived at Bradford and made our way up the windy cold hill to the Uni where a cuppa tea was waiting……

The students started to arrive and the room came alive with chatter…..before I knew it, Barbara called us all to attention and we started…..by introducing ourselves…..there were students, their supervisors and a visiting Professor Myrra for the Netherlands…

We had an hour for oral updates from the students…..

Paul was up first…investigating how people with dementia manage their medicines at home and the role the community pharmacists can play. He wants these questions answered….how people with dementia manage their medicine?, especially the implications of living alone or with different types of dementia. How community pharmacists support those people and what should be the way forward…..

He is organising focus groups and follow up interviews in their own homes, taking photographic evidence of their routine. Next would be a focus group with community pharmacists who would see the photographic evidence from the first group so they could see the strategies they use or not……he’s still at the ethical approval stage, but is now close to achieving that

It became apparent from Paul and from other comments from the students that the ethics process is difficult…….

Akhlak was next…….he is looking at the step changes in caring for someone with dementia at home in the South Asian community  – is there a role played by gender? Does Faith play a role? He has had challenges with recruitment due to the stigma associated with dementia in this community. He’s found you have to have trust and rapport with people for them to talk to you so building trust has to start before any conversations can take place….Intergenerationally there are also differences of opinion . Akhlak said some really interesting and practical things around Faith and the part faith can play in South Asian communities…..how for some it is extremely importantfor and for others, not so. Stresses the need to look at what’s important to the family that can help…..

Angela next…..looking at transition between settings of Hospital and back to Care Home, so exploring the role of the nurse in hospital and the nurse in a care home when the person leaves hospital and goes back to the Care Home. She’s spoken to Care Home nurses and hospital nurses.

She found it sometimes depended on the type of ward the person with dementia had been on. A short term ward may not have the time to spend on connecting with the care home in detail. She found too many variables affecting the result…..and found the challenges lay in the release of the nurse from the ward to be able to speak to her.

As Sandra said, the variables must explain the inconsistency in care and transition from hospital…..it also depends on the individuals experience of working and understanding the needs of people with dementia….

The communication between hospital nurses and care homes nurses seems to be a barrier to the creation of a good transition…..Nurses in hospital rarely start off working in a Care Home so have no understanding of the needs……they don’t see each other as equals.

Helen was last before lunch……she was looking at Women Living alone when diagnosed with dementia and the things they developed not to go into a care home. She looked at it from a feminist point of view. When she tried to find people in Care Homes that had lived alone, she met lots of gatekeepers…disempowering people with dementia. She felt it was to do with being a black woman. She was met with a lot of resistance and prejudice. The participants she did get were all from word of mouth and not from organisations….they were all living alone when diagnosed.

All the 4 participants lived alone before they were diagnosed and it’s how society can enable people to remain in their own home…..

The 4 participants surprisingly didn’t speak about dementia. They spoke about other co-morbidites. They all stayed in their home with support. All varying with different types of support. Some had minimal support. One had her family move in with her and she was able to still socialise…whereas those who just had someone come in to do cleaning, the laundry etc, simply felt old…..

Four fascinating and important studies……

Lunch time and time to chat and catch up and take a piccie of the 4 students

Paul, Angela, Helen and Akhlak

After lunch Murna spoke about the future of the Doctoral Training Centre…there are many other Phd students who aren’t funded by the DCT…..they are seeking funding through other areas for the other opportunities to appoint other PHd students. However they want to continue this model of having a twice yearly meeting with ‘the family’ that is us……it can be very lonely being a Phd student, said one. I said:

“It’s also very lonely living with dementia and caring for someone, and coming together with students is like a hug from them knowing that they care enough to do their research, seeing the passion they have for their subject and desire to change practice but also the students receive a hug from us knowing that what they do is appreciated – it’s a win win…….we help each other.”

As Sandra said….there needs to be a helicopter view of all the interlinking that exists between each project of our DCT students…all the different transitions….we spoke a lot about the challenge of what happens next……to me it’s the duty of the Alzheimers Society to fund evaluation of the interlinking in the form of a grant to enable them to produce a paper which would be invaluable in showing the connections between all projects and lessons learnt…

Students have such hardship when their funding comes to an end yet life has happened, unexpected breaks have interrupted the process. But also there has to be an acknowledgement that social research is very different from clinical research as it’s involved in ‘the now’, what’s happing in society now.

The students here are also from clinical practice…..the easy option is to go back to the their clinical world and leave research. Admittedly they would take back a better understanding to their clinical world and change practice, but short term contracts and access to roles in research aren’t an easy route. Their projects need to be implemented…..but they rarely are and is very frustrating for them and us…..

We could have carried on for hours, but we had to stop and have the Monitors meeting with Murna, Jan, Sandra, Sandra and me….we sat for half an hour chatting about the students and clarifying what we needed for our report. Sandra Duggan offered to write the report this time……

We all agreed on the value of lay panel, like ours, to support the students through their studies. We can show them the reality and why they do what they do is so important for people living with dementia………brilliant day and yes, after the trauma of Monday, they did make me smile…..

 

Day 2 in London – Dementia Enquirers….

It was a night of sleep, wake, sleep, wake….my eyelids firmly closed in exhaustion from the day but my eyeballs wide awake and staring into blackness…..we’d had a lovely meal the night before, a meal of sharing wonderful stories, sadness, laughter and everything in between …can’t believe I didn’t take a piccie!

My eyelids finally secummbed to the mischievous eyeballs behind them and opened for the day. Showered, I settled down with a cuppa to go through my morning routine – solitaire, scrabble and my new found friend ‘Wordscapes’….just as an extra when my friends have yet to take their turn at scrabble…..

Philly knocked for me at 8 and we went down for breakfast before the start of another heavy day…..but at least my head felt better…even without sleep……🙄…(that’s dementia for you – just no telling from one day to the next)

Over breakfast we had a wonderfully emotional and passionate discussion about Personal Independence Payments (PIP) as I have my next onslaught starting into the system on Monday. The distress and emotional turmoil this is causing for people is beyond comprehension so we decided we need to do something…..Philly wished she taped that conversation as it was so off the cuff so filled with detail from each of us……..

Packed and ready, we met in reception and trundled to our venue for the day…the same lovely one as yesterday…….

Today it was the Pioneers meeting. We sat chatting while we waited for Mhari and Hugh…….we were in a different room today, a smaller one. It was Georges first meeting as a Pioneer and Mhari and Hugh had travelled just for the day.

I asked for a piccie while we were all relatively fresh

Philly started off telling us the plan for the day ..and then briefly spoke about yesterday and the ethics of research and what we might do differently. We will come up with a simple ethical framework to share with the next lot of grants and ask them how they’re meeting our ethical framework…..

We sat and discussed the make up of the panel and agreed we need an academic to sit and advise us but with no vote….someone with expertise in their field who would be happy and understand their role as an advisor ……

We, as pioneers, all volunteered to be on the panel and discussed which academics we trusted to work in the way we needed and who we thought might be prepared to work our way……

We’ll combine ethics and decision making for the next lot of applications for research from people with dementia at our Pioneers in our Woodbrooke meeting in June…

We decided we would call ourselves DEEP Ethics Panel…..this is the start of a much bigger piece of work which will inform the more formal ethics committees and hopefully change and question current processes…….

We stopped for a cuppa and cookie……and moved on from ethics to the 10 new projects that will get funding in June.  Groups of people with dementia from the DEEP Network, deciding what they want to research and applying for a grant.

Today we wanted to discuss the process we had last year and what might needed changing after the lessons learnt from the past year….not that we could remember, but that’s why our ‘able enablers’ are there…..😂

We had 10 decisions to make….so Philly had to keep us on track and crack her famous whip 😂🤣

We went through the list of ideas of what it means to be ‘in the driving seat’ of a research project….the guidelines we expect groups to follow when conducting research while realising that everyone’s contribution could be at different levels of ability…..

Much conversation took place around emotional decisions and factual decisions

We had a quick break then the final session before lunch. We came back and Philly asked me to read my blog about yesterday….which was as much a surprise to me as everyone else!

Philly then fed back how they’d received the numerous emails from the ally academics who attended the first day. They were all full of passion, full of enthusiasm and hope for what we were doing….we know some academics would want to be involved for the wrong reasons, but those allies seemed to get it in my opinion. We all have our different opinions….

We had offers of support from them….many academics find the ethics process difficult and someone suggested finding out from researchers themselves what they find difficult that may help us in our campaign to change the process..and highlight the changes needed.

Before lunch the final item was around an idea from Pachael and Philly about using money still available on a project on Power and Control and what barriers exist from us having control over our lives……we came up with loads of ideas…..lots of food for thought……

Which brought us nicely to lunch in the café…….and me and Rachael had a lovely Celeriac and mushroom soup and warm bread….🤗 hug in a bowl……

We were the only ones in the café….a lovely café with lovely people serving lovely food……a great find of a venue….and they had pictures on the wall, some of them depicting the music of The Beatles…

 

We made out way back for our last hour  before the end of the day…..

For the Funders, the National Lottery, we have to write an ‘engagement plan’ ….who we want to engage with and influence as the National Lottery want to help us…….we obviously want to engage with academic researchers, engage with Universities, with conferences where we can influence a change in views…..

The last idea was around an article for a journal…..Disability and Society journal….

Our final discussion was around the Event in May to celebrate the completion of the first lot of projects…..each of the 10 groups are invited to share their successes and challenges….and hopefully the funders will be there….

I said we needed to end the whole session by having everyone leave with people saying…..”WOW! What’s next??????”

Our last task was to record a sentence about how we feel Dementia Enquirers is going and I said:

“The seed that was sown over a year ago, is now growing into a youngster and you can see the adult developing and gaining character. I’m leaving this last 2 days exhausted, but once again full of renewed enthusiasm for what’s still to come….”

 As Agnes said “My tired is even tired….But it’s nice to feel tired and have achieved something…..”  And off we went our different ways home………the days a blur already…..

 

 

Another trundle back down to London….

A busy week travelling this week so yesterday was another trundle down to London but this time for 2 days…..

It was going to be 2 days of full on Dementia Enquirers with the first day taken up by an Ethics discussion – the issues for people with dementia and ethics committees, the barriers we face and possible solutions…..

The second day would be a meeting of the Pioneers – agreeing a process for the next lot of grant applications…..so 2 heavy but fun packed days with playmates, and our able enablers, Rachael and Philly.

Anyway before the start I had to get there…..a silly o’clock start again as I’d decided against staying the night before due to being in York and I prefer travelling on the day and staying just one night. I’m also not keen on travelling at night, which is what I would have had to do on this occasion. I find travelling in the dark disorientating but in the morning, it eventually gets light which makes it more possible.

The taxi people had asked me the night before if I could be ready 5 minutes earlier so at 05.40 this morning I was ready and waiting with my suitcase and the taxi lights appeared. It’s often a quiet trundle at that time in a morning as neither of us are quite awake. It was all going fine until we got to the station, then I realised why they’d asked to pick me up early ….because he had another run for the same train straight after. He started to rush me and rushing me never works. I hadn’t been organised so didn’t have my money ready, so fumbled about dropping coins and getting in a pickle 🙈…I don’t really know how much I gave him and then must have dropped my glove when getting out as I realised I had one cold hand as I stood on the platform trying to get myself back to normal 🙄…..I’m fine as long as people give me time…….but, of course, when others are in a hurry, they forget that…..

The train was on time, I got my cuppa weak black tea and everything was ok in the world again……it was a very busy train though and agitated passengers trying to find seats and arguing with staff made for a stressful journey on an already discombobulated day…..I didn’t feel right, so instead I tried to disappear into my own world and look out of the window …

Soon the daytime appeared making it a much friendlier world….

I got to London in plenty of time to find this new venue….so went for an amble first …..and ended up leaving my stick somewhere 🙈….I’d had my suitcase to balance on so hadn’t noticed until I went to swap hands…so I had to retrace where I thought I’d been. Turns out I had left it in a shop but they’d taken it to lost property 😳…so then had to find Lost Property, then they wanted ID, and to fill out a form 🤯🤯🤯🤯🤯🤯 but they saw my lanyard and decided I wasn’t a risk and let me have my stick back🙏🙄

Because of the stick panic, I was then in a bit of a pickle about being late and ended up getting lost🙈 and Google took me through a housing estate🤪😱…….went the wrong way …but then I spied a sign on a building in the distance – Lumen, my destination. Playmates were there so much appreciated hugs were given all around…..I went outside into the courtyard just to settle my head…

We finallly started and Rachael and Agnes were chairing the day. We went round and introduced ourselves. Today we had many people there, including playmates and academics who had been invited to help us, from a variety of Universities…..

Rachael whizzed through quickly saying what Dementia Enquirers is – people with dementia leading reasearch from the front on subjects WE think important to research. Along the way it’s hoped that people with dementia will learn new skills, such as around ethics today…..

Dory introduced the ‘Jargon Jar’ to emphasise the need to use plain English otherwise you have to pay a fine. I said “or you can write us a cheque at the end’….🙄😂

There’s a barrier around ethics approvals for our projects – do we need ethics approval? And if we do then there are so many barriers to achieving this. But can we create a new system that’s quicker, a more urgent way.

Tom Shakespeare said the problems are that the ethical process is difficult and complex for the professionals so for those with cognitive difficulties it’s even more complex.

Publications will ask where did we get ethical approval…..or won’t publish, so that’s another barrier in having our work taken seriously.

The Pioneers then spoke about the issues ……mine was:

“If we can influence ethics committees to see our ability differently – to see our un- vulnerability as they are always trying to protect us.It will dispel myths around our capabilities”

 We want to create our own system, our own ethics process….”The University of the Dementia World” as Agnes said. But as Tom said, we still have to follow certain laws.

 The academics then responded. Someone said there’s a cultural problem as even Junior Researchers have problems when needing extra support and help.

If we create our own ethics process, will it be considered as something to take seriously?

“The more noise we can make about being disempowered, the better”…….said academic Lucy.

There were disagreements and voices raised in the room, but we all have respect for one another and could listen to each other’s opinions. We were hearing the frustrations in peoples voices about some of the current systems. I started to get confused as to why we were here and getting a bit discombobulated but think that was just me and my brain on the day…..

We finished off before lunch with what we need to consider to set up our own ethics committee …..working in pairs, one person with dementia, one academic. I was working with Tracey from Worcester Uni. I found this head blowing just to understand what I had to do…….the conversations going on around me made my head buzz. Took me a while to simply understand what I had to do and Philly came along to help and then Tracey tried to help and eventually I could do enough to contribute, but not to my usual standard…..just not a good day for me…Tracey drew the short straw getting me today! 🤪….

Philly went through  all the post its trying to gain a consensus….no easy task!

More discussion followed….on what this process, committee would look like, building trust between people with dementia and academics…but it was time for lunch and a head break…….

After a lovely lunch where the chatter continued……Agnes started off the afternoon to help us create an ethical approval process with people with dementia leading…..

 We had to list step by step what would need to be in place……again Tracey drew the short straw and had me….🙄……but we managed to get through it before the discussion took place.  But in between Agnes did a wonderful relaxation 5 minutes….and then we continued with the last hour….we each fed back what we’d come up with which put altogether was very comprehensive…..Dory’s group got a brownie point for suggesting a 15 minute video to play each time to help us remember what we’re doing and how.

someone said, at the end…”it would have taken others many months and many more meetings to achieve what we achieved today” but they have one thing we don’t…..time…..

There were lots of different opinions in the room and Agnes and Rachael chaired amazingly …….but as Agnes said

“We rise above our differences to get an outcome” ……..a good way to finish an intense but good day…….and all I wanted was my hotel room and silence…….

 

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…..