I suddenly realised, when home from paradise as I scanned my calendar for stuff, that I hadn’t advertised our next Recovery College course – Living with Dementia 😳…..I say ‘our’ as me and my lovely friend, Cathryn Hart, Manager ofthe Humber Research Team, run these courses twice a year as part of NHS Humber Trust Recovery College programme. They’re usually face to face but like most things at the mo, it will be on line and because it’s the NHS it will have to be my least favourite Microsoft Teams instead of Zoom, but no choice there.
Anyway, it’s on July 12th 10.30-12.30 (yes, I know, sorry for the short notice!! 🙈) if you’d like to join us – people affected by dementia AND any healthcare professionals, Care Home staff, and anyone who’d like to join us for a couple of hours – please register by clicking on this link and registering Ignore the date that’s above my piccie, not sure what that means 🙄
Since my diagnosis of dementia 7 years ago next month, I’ve been fortunate to meet the most wonderful people; people I would never had had the good fortune to meet otherwise. Most of these people have become good friends. It’s no secret I call other people with dementia my second family, but professionals too have become dear friends, one of whom is Professor Pat Sikes.
I met Pat initially through being an Alzheimers Society Research Network volunteer on her project with Dr Mel Hall – the project was looking at the experience of children and young people with a parent with dementia diagnosis has on young people of family members.. The study had its origins in the experiences of Pat’s own family.
Since then we have become lovely friends who rarely see one another, but when we do, smother each other in hugs, however we email regularly with news and share each other’s ups and downs.
So when Pat emailed me, asking if I would blog about her current research, how could I refuse?
The study is being carried out in the US and UK so anyone who has had a parent with an inheritable type of dementia can take part. They’re looking at the comparisons between the two health care systems.This will hopefully enable you to express your views around genetic testing to allow better support to be created…..
Once again, it’s such an important study – they are interested in understanding the impact on children who are now 18 years of age or older of having or had a parent with an inheritable type of dementia and their thoughts about genetic testing in order to better support such individuals. Pat and Mel are joining with Dr Caroline Gelman from Hunter College which is part of the City of New York University to explore the thinking of young people who are at risk of inherited dementias around genetic testing. If you – or someone you know, is in this group you may be interested in participating in this study. Contact details are given in the attached flyer – you may have to zoom in to read the content but I couldn’t make it bigger so I’ve copied the contact details below so you can just click on their email address🙄.
As on the poster, If you are in the UK please contact Pat in the first instance – p.j.sikes@sheffield.ac.uk
So it’s the start of Dementia Awareness Week. I’ve never been particularly keen on this as for those of us affected by dementia it’s with us every day of the year and never goes away. So to spotlight it one week a year seems a tad patronising to me, but hey ho, it gets people talking again I suppose.
Innovations in Dementia were given funds from The National Lottery Community fund to set up Dementia Enquirers, a new approach to research that is led and controlled by people living with dementia.The lovely cartoonist Tony Husband came up with our image
The reason for the image, is that ‘leading’ the research doesn’t necessarily mean being behind the wheel. Every component of a car helps you get from A to B. Someone maybe the headlights, coming up with the direction, the ideas we take, others the wheels making sure it happens, down to the nuts and bolts holding it all together – every component vital. Even the professional lead researchers delegate work to be done by others and we were no different.
The difference in our research was that WE chose the subjects that WE thought were important. WE decided how to go about it. WE invited others through our door to support and help.
“We believed we could…and we did!”
The projects are:
Thred, Liverpool: How can urban and rural transport systems help people diagnosed with dementia live independently for longer?
Minds and Voices, York: The pros and cons and particular needs of those living alone with dementia and those living with a care partner
Beth Johnson Foundation, Stoke on Trent: Does class, ethnicity or intellect affect the dementia pathway?
Riversiders in Shrewsbury (with Minds and Voices, York): an enquiry into the what DEEP and Admiral Nurses know about each other
Our Voice Matters, Hartlepool: An enquiry into the benefits of groups for people with dementia
DEEPNess, Isle of Lewis: The necessary components of a dementia-responsive teaching video
EDUCATE, Stockport: The EDUCATE Echo project
We came together last week via zoom to celebrate the launch of our reports – the findings from all our hard work over the last couple of years. We had the challenges of Covid, but we overcame them and continued adapting as we always do.
Now obviously I’m biased because our group in York, Minds and Voices was one of these groups and you can read our interesting findings and advice for professionals as a result on the link below
But obviously ALL the groups looked into some really interesting subjects and the rest can be found here:
A few weeks ago, I had an email from Piers Kotting. We worked together during the launch of Join Dementia Research some years ago. He’s now working at setting up a similar database for Rare Cancers and he asked if I would write a blog for their web site encouraging people to sign up if they’d been unfortunate enough to have been diagnosed with a rare cancer, so here’s what I wrote……..
Imagine yourselves being given a diagnosis of Young onset dementia. Your life falls apart, you feel worthless and of no use to anyone any more……Services are non existent in this area so you feel abandoned
That’s what happened to me in July 2014 at the age of 58 when I was diagnosed with young onset dementia
Now, Imagine, if someone if someone came along and asked for your opinions, asked you to be involved in gathering information. Someone who was genuinely interested in what you had to say. Someone who was willing to travel to your home just to see you. Imagine how that would make you feel………
Imagine the impact on your well being – finally hearing someone acknowledging that you still had something to give; that you still had an valuable opinion and views that mattered.
That’s what happened to me when I started to be involved in research
When I was diagnosed with Young Onset Dementia in 2014 I was given no hope, the one word I so badly needed to hear at that point. It wasn’t so much hope for me but hope for my daughters, future generations, not to have to receive such a devastating diagnosis. Then one day I was asked if I’d like to be involved in the launch of a research database called Join Dementia Research. This was the hope I desperately needed so I jumped at the chance. I refer to it as a matchmaking web site for researchers and willing volunteers.
Without research we can’t change the future and without hope our lives seems worthless. Now I’m involved and have been involved in so many research trials that I can no longer list them all; clinical, social and technological, all equally important.
So I’m here before you today as someone all researchers seek out on a daily basis – a willing participant…..-
Why am I so willing? because being involved has given me back that sense of purpose that a diagnosis of dementia stripped away from me. Because research gives me hope that my daughters will have a better future.
That’s why I wholly support the introduction of the new research web site for rare cancers, www.rarecan.comThis aims to do exactly the same for people unfortunate enough to be diagnosed with one of the rarer cancers.
Often, with rare types of any condition research is hard to find, harder to come by, this web site will enable YOU to identify yourself as a possible participant. At a time when you’re probably at your lowest, having just been diagnosed, taking part in research will give you back that sense of worth, of value, just like it gave me.
Remember, we can’t change the future without research …
They asked me to provide a photo of me which represented hope ……..and the first that came to mind was this…
You can hear more about this wonderful new web site below…
On the 7th September 2020, Adam Smith hosted the Dementia Research Chatathon LIVE – to share information on the wide variety of research taking place across the world, and to raise money for Alzheimer’s Research UK.
He invited myself and my lovely playmate Chris Roberts and his equally lovely wife, Jayne Goodrick, to open the 12 hour session. You can hear what we said on the link at the bottom…..
I hate watching myself and made the mistake of watching it to remind myself what we’d spoken about. But the continual twitching of my face and movement of my hands I find so sad. I always used to look so calm in my previous life. The aura of calmness was a trademark, people used to say, but not any more….the intense concentration can be seen on my face. Trying to keep up with the conversation, a sign of my dementia….I can be twitching away, these involuntary movements taking over, then I’ll realise and can stop….only for them to start again a few seconds later 🙈🤷♀️
Well, as you’ll see and hear, Adam was worried about filling the 30 minutes we had with him, but once you start us off, you can never shut us up….😂🤣
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:
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…🙄
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…🙈🙄
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…..
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 ‘inthe 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…..
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:
“Ifwe 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…….
