Category Archives: Research

Bits and Bobs of fabulous research……

I rarely type now about all the stuff I’m doing on zoom as I can’t type while it’s in progress and when it’s finished too much has floated away from me. However this week I thought I’d try and collect together a few days of interesting stuff as it’d be a shame for me to lose it….

So…starting with last Wednesday…we had a great session on Zoom with Sterling University. “We’ being the Dementia Enquirers Pioneers.

The session was open to all MSc students – also PhD students and staff in the faculty/university and was being recorded. It was also compulsory for all student on dementia studies to watch it. My books are also on the syllabus so Stirling take their inclusion of people with dementia very seriously – a joy to see.

It’s hard to define what Dementia Enquirers and the Pioneers are all about in a couple of sentences. However, we wanted to investigate the idea that people with dementia could be in the driving seat of research.

the lovely cartoonist Tony Husband provided the image

We are funded by the National Lottery Community fund and are in the last of our 4 years – can’t believe it’s 4 years! Historically ‘research’ was the sole domain of academics with their own jargonistic language in their own world. What we wanted to show was how our two very different worlds could come together for the benefit of both. The outcome would be far richer and more relevant research being carried out. The academic expertise of researchers, working in partnership with our expertise of lived experience bringing about a winning formula.

The Pioneers did this by creating two valuable resources – The Gold Standard Ethics and A Guide to carrying out Research. In these, we demystified the process of research and ethics. We weren’t trying to dumb down and discredit researchers in any way. But we wanted to simplify processes which appeared unnecessarily complex and archaic. Some universities use these resources and they help students understand research far quicker. More importantly they gave other people living with dementia the confidence to carry out their own research in their DEEP group. Just like we did at Minds and Voices when we did our “Living alone versus living as a couple” project. You can read our findings and those of others on the link below

We weren’t naïve enough to think we could do all this ourselves, so along with our able enablers from Innovations in dementia, Philly and Rachael, we also had allies in the academic world who specialised in certain area – e.g. disability, ethics etc. These allies, who included Professor Tom Shakespeare explained the complexities we struggled with, helped us produce papers for journals and were our advisors.
I could go on and on about this passion of mine but more can be found on our website

Needless to say, the session with the students at Stirling went down a storm……and is compulsory watching for their students on the dementia course

Time for a piccie as after the session I needed a walk to clear my banging head….the ducklings entertained me by trying to catch flies in the sunshine…🥰

The following day, Thursday, I was at York University. There I working alongside two researchers, Mark Wilberforce And Louise Newbould on the HOPES Study. Researchers do like their anachronyms 🙈…havn’t convinced them otherwise – yet………HOPES stands for Helping Older People Engage in Social care. Our web site says:

Not every older person is ready to accept support, especially with social care. How can you adapt your care so people engage well?”

Many people with dementia or mental health issues are reluctant to engage in care and we were wanting to find out why and what changes can support workers make to help turn this around An outcome of the study is to produce a training resource for Support workers. Today we were there to record scenarios for the training pack. We were recording just our voices for some bit and in person for others. I was playing a person with dementia who was reluctant to accept help in the home (🤣 typecast or what🤣)……

The taxi was picking me up at 06.50, so I only had time for a short trundle to see the sunrise, but I faffed around so much deciding where to view it from, that when I got to my final choice, the sun had risen 🙄

Thankfully I didn’t have to learn any lines as everything would be on autocue. They could have got real actors, but having real people play themselves seems far more beneficial and would be more realistic. We immediately understand what we’re saying and why. So David, a former carer, played a carer and a support worker would play her own role.

Once there – and thank goodness my taxi driver knew where it was as I’d never been to the East Campus. York Uni is so humungous now it felt like we’d driven out of the Uni and into another…😳

I was the first to join Mark in a room upstairs and we took the opportunity to have a quick zoom with Laura Haviland. We’re launching a new initiative in the Yorkshire and Humber area. The NHS is used to working carrying out research to improve health crae but local councils are totally alien to the concept of using research to improve social care. The Curiosity Partnership is a 4 year project to bring local authorities to work with researchers in developing social care evidence based services. I’ll be there as a member of the public with dementia, passionate about research, telling why they should and what benefits they’ll gain, so there’ll be a blog afterwards.

Other people started to arrive so we ended the zoom and got on with the days session.

They will trial the training resources in June with actual support workers. So the Occupational Therapist and Support Worker, who’ll be delivering the pilot training were there. For them it’s safe learning – there’s 4 modules of teaching and then a few weeks later there’s a reflection session where the support workers come together and ‘bring the problems they’ve encountered since’. The first of the modules includes:

And the carers experience, near the end of the first module is a wonderful piece written and spoken by a carer, detailing his experience and why good support makes such a difference. I heard the man on another occasion reading his piece. Havn’t a clue what he said but I remember it was an emotional moment and a WOW moment to finish the first module. Then he arrived too! so I was able to tell him so.

We were in a room overlooking the lakes. The students here have the most wonderful surroundings but, as so often is the case, it’s not until later in life that you appreciate such surroundings. If I had a meeting in the pod by the side of the lake, I’d never get anything done as I’d be watching the wildlife. In my younger life, maybe I would have seen their squawks as a nuisance 🤔 not sure……

The man doing all the techy bit downstairs turned out to be the guitarists from 90’s Indie group Shed 7 who sang Chasing Rainbows, which I LOVED! He was very nervous in the beginning as I was the first and Louise had probably told him I had dementia. The first major stumbling block was the auto cue – it was too far away and I couldn’t read it 🤣….I just said, move it nearer, but he got in a fluster thinking it couldn’t be done. “There’s always a way”, I said trying to calm his nerves. After a few minutes he had the bright idea of moving it closer …..☺️…bless. After he realised I was ok, I could read and did my bit, he visibly relaxed. In fact the rest of the day was lovely with lots of chatter. I knew Sarah would know the group so had to have a selfie

Our voices for the scenario – of me the the ‘challenging mum’ 🤣 about accepting care – would be overlaid onto the cartoon – I think it will be perfect! We all enjoyed doing it.I can’t believe I didn’t take a photo of everyone 🙈….but a lovely Occupational Therapists and Support worker gave me a lift home as they were from Beverley and on the journey, we put the world to rights 🤣 They saved me nearly 2 hours on public transport!

It was a most exhaustingly long day but different and very good fun.

This project is my first working alongside the researchers in co production I think 🥴. It’s gone really well. We’ve made mistakes along the way when it hasn’t felt like a partnership but tried to find a way to put them right. That’s what co=production is all about. Mark and Louise have been fully supportive of mine and Davids involvement right from the start.

The web site will have all the training material eventually but it’s a lovely friendly web site to have a look through. You’ll also see me and David mentioned alongside the researchers…..

HOPES – Helping Older People Engage with Social Care

Have to end by allowing you to hear Chasing Rainbows….our lovely man is the guitarist

The longed for face to face meeting…..

Zoom is all well and good at keeping you connected, but clicking a link on my ipad all the time doesn’t stretch my brain so much as arriving for a face to face meeting. The day before I’d spoken to healthcare staff from Dove House Hospice and the local hospital Trust about how to have ‘difficult conversations’ with people with dementia and their families about future planning and end of life. I sooo wish that had been in person but such are the times at the moment…🙄

This one was in York this Wednesday to discuss our research project into providing the evidence for our Good Life with Dementia course – evidence of how valuable it is. We all know its worth but the powers that be that commision such courses need ‘evidence’ in black and white 🙄…

We’ve been conducting the research with Dr Chris Clarke, a Consultant Clinical Psychologist, as the lead. Me and 2 other playmates are on the team, Howard and Irene. Howard attended Minds and Voices first ever course and it changed his life for the better, Irene attended a course and now runs them in her own area with other playmates.

The Good Life course is for those newly diagnosed to answer all the questions no one mentions at diagnosis and is written and run by people living with dementia with a facilitator keeping us on track. Several have been run now in various parts of the country and have been a huge success, but we still need evidence 🙄… Minds and Voices will be running another starting next month I think 🤔

Anyway, taxi arrived, on another grey breezy day.I paced up and down outside the bus station to keep warm and thought dementia was playing yet another trick on my brain as there was a dog on a roof 😳…. I took a photo to see if it was real or dementia tricking me and it was real 🤣

I stood watching for ages but it didn’t move thankfully so just an ornament but very realistic! I eventually settled on the bus for the long ride to York….

The rape seed fields were ahead of time and bright golden yellow in some and still green in others – such is the crazy weather we’ve had……hot one minute, cold and windy the next 🙄

I walked across York to the station to get a taxi to York Uni as I wasn’t sure where I was going and hoped the taxi driver knew where the particular college was….turns out I would have gone to a totally different place….🙄

The taxi driver dropped me off, I went through the door and there was the meeting room – result! Chris hadn’t arrived so I had a look round and found the lake

When I got back, Chris was busy getting the room ready

Sadly our third playmate, Irene, couldn’t make it after all…

Howard arrived and our first hug for over 2 years! The research assistant Sarah arrived at the same time as the cuppa tea, so all was right in the world. Sadly no one else was available to attend so we were small but perfectly formed.

Chris began by going over the process of Theory of Change – what is it specifically about the Good Life course that makes it good. We will interview people who go through the course, both learners and tutors to see if our findings fit with their experience…..

We began talking about the Ethics approval and Howard had the brilliant idea of going before the Dementia Enquirers pioneers first for ethics approval before we go to the NHS ethics approval.

The 3 stages of theory of change would be..

• How positive changes happen on the good life course. But what brings about change?What would we hope would the outcome be for those attending? What would the wider impact be if the course was adapted all over – the vision for the Good Life Approach.

• How do we get there – what do we need to set that up

• How do we set that up

But we don’t need to include everything – only what’s necessary – the basic ingredients

I said we need a basic recipe – a bit like baking a cake – we need flour but do we really need chocolate chips? – suddenly, turning it into the production of a cake made it all crystal clear for me 🤣

We worked backwards from the finished cake back to buying the ingredients….

So we started with the Vision – our Mission Statement– if the Good Life Course was available everywhere what would be the impact –

I said consistency around the country which doesn’t exist at present. If the Good Life course was available everywhere, that would create the consistency of post diagnosis support.

Me and Howard come from different points of view as he was a learner and I was a tutor.

So Howard said – before he attended he was dying from dementia. By the end of the course he was ‘living with’. His wife came with him because she thought he couldn’t travel on his own but after the first session, she enabled him to travel on his own. And since that moment his life has changed for the better ten fold.

It should be seen as part of our treatment – perscribed…..

Howard brought up the great subject of prescribing people the course first instead of antidepressants…..then see how they are – do they really need tablets?

We started to think of a sentence that describes our vision and we had a few ideas. Eventually for this section we had two possible sentences on the white sheet and the green post it’s are the words that got us to those sentences…..I still don’t think we’ve got the sentence on the white paper quite right as it’s too wordy, but we’re getting there…I thought afterwards of:

Establish a programme of peer led support that forms part of our treatment at point of diagnosis and can be prescribed by professionals 🤔

Tea break and we still had breakfast pastries left 😳…….

So after the Vision was sorted, we started the first phase – Outcomes and positive changes that may happen – the cake coming out of the oven…

The outcomes are all there for people to choose as they wish. The choice is there for individuals to take or leave – e.g. some may like to ‘join’ the community of Minds and Voices afterwards, others are happier not to.

Potential Outcomes are not one size fits all.

The next part of the process – is what are those active ingredients that lead to the outcomes above?……..this is the recipe/ingredients….

What brings about change….? What does the course do?

It provides a safe social space, practical knowledge, learning from each other, emotional support, building relationships and community and we share experiences……it enables learners to contribute by coming with questions they want answered. Exploring dementia and what it means

Lunch arrived and it was time for our final break. My brain was becoming slower, more sluggish ……before settling down for our final part for discussion

The final part was the shopping list – what has to happen first before the course can exist – what’s on our shopping list for the cake.

This is a stretched out process and the most complicated because things have to happen before other things can happen. Funding has to be found. You have to know who the audience will be to know which facilitator will be appropriate – cultural sensitivity – conversation and engagement must take place with professionals/clinicians/commisoners for them to see the value based on peoples experience. Because if they don’t come on board we won’t get referrals.

It’s important that facilitators need to be trained in how to facilitate and not lead a group as it has to be led by people with dementia….it has to be the right type of person otherwise the course will fail from the start e.g. if they take over, then it won’t be led by people living with dementia; If they don’t have the skills to enable everyone to contribute to the discussion etc

Within no time at all our time was up and it was 2.30 – how did that happen! I’d loved the way we broke the Theory of Change into a recipe for making a cake – it was something I could relate to as I’d been a tad confused before we thought of that…The 4 steps, including the Vision were going to the shops, having the recipes, cake coming out of the oven – the impact of the cake 🤣 love it……

It had actually worked out really well that there was only 4 of us and we’d achieved an awful lot in the 4/5 hours we’d been there. It had been relatively quiet because there were just 4 and we each were able to have our say…..for a first outing for a face to face meeting, it had gone well, but boy did my head hurt. The amount we’d put ourselves through had been 🤯 but lovely.

Today was an example of true co-production…

Chris gave me and Howard a lift back to the station and my bus was there waiting for me 🥵…..another few minutes and it would have been gone….the bus has changed its route from one side of York to the other so instead of the river I have, as my last piccie, Cliffords Tower

Very tired, head banging but a good meeting……how I used to travel up and down the country 3 or 4 times a week I really don’t know and don’t think I could or would want to do it now…

Recovery college time……

On Tuesday 7th December 10.30-12.30, me and Cathryn Hart from Humber Trust Research Team will once again deliver our “Living with Dementia” workshop. 

We do these workshops probably twice a year and they’re always well received. Pre the world changing, they were always face to face and we could mingle and chat to people as they came in and then again, when they had a cuppa tea at the break……but we all know how the world has gone on line since the C word began to exist 🙄

So here we are again on zoom…..however, it does mean that anyone can attend instead of those specifically local to the venue. 

Me and Cathryn often chat about ‘winging it’ but what we mean is, we have a basic outline of what we want to say and then judge the content according to the type of people who attend the course…..so we’re very flexible friends…🤣

We never have high numbers on zoom as it gets impersonal, but we do have half a dozen places available if anyone is interested. Preferably those newly diagnosed, or family of those newly diagnosed or healthcare professionals – GP’s would be most welcome! 

To book a place either:

Tel 01482 389124

Email HNF-TR.Recoverycolleg@nhs.net

Or visit their web site – www.humberrecoverycollege.nhs.uk

Or message me on my blog if you have a problem…..☺️

Join me on a our bi-annual Recovery college course…..

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 🙄

https://humberrecoverycollege.nhs.uk/news-article/2021-06-22/living-with-dementia

Do you have a parent with an inheritable type of dementia?

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.

 You can read more about that here:

https://www.sheffield.ac.uk/education/research/crit-psychology/dementia

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

In the US contact Caroline – cgelman@hunter.cuny.edu

If you don’t consider taking part in research how can we change the future…..?

“We believed we could…and we did!”

Dementia Enquirers……to show what we can do…

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:

As we said at the beginning:

We believed we could…and we did!” 

A New Cancer database for Rare Cancers……

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…

Being part of the 12 hour Chatathon…….

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….😂🤣

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…🙈🙄