Category Archives: Research

We can’t change the future without research………

Three things on this blog….the first is a plea to anyone reading this living with dementia 🙏

Myself, and a small group of other people with dementia, have created a survey. We want to find out how it feels to use public transport as a person with dementia. 

You can fill our survey in here: https://www.surveymonkey.co.uk/r/transportdementia

It will take you about 8 minutes. We really hope we can use this information to improve things for people with dementia. Thanks so much! 

Alternatively, if any of you are care partners of someone with dementia, maybe you could sit and help your loved one to complete it?

Deadline is 13th December 2022. 

Secondly…..😇 Those who have been following me for some time, will know of my passion for research. I’ve been with Dementia Enquirers all through its 4 years existence starting in 2018 – ably enabled by our wonderful friends at Innovations in Dementia but namely Philly and Rachael. It’s aim has always been to:

“…..to develop a new approach to research, or ‘enquiry’, that is led and controlled by people with dementia. In supporting DEEP groups to carry out their own research projects. We are particularly interested in the learning that is coming from this project.”

You can read more on our DEEP website

Recently while we were all meeting in London, we made a film and it had its first showing a week or so ago….it’s only 10 minutes long, so grab a cuppa and watch and listen to me and my wonderful playmates….

Finally – you’ll be glad to hear 😂 back in September, on World Alzheimer’s Day, my local clinical research network team released this film I made all about my passion…..

I made it at my local Trust headquarters along with members of the lovely Yorks and Humber research team, headed up by my partner in delivering the Recovery College session, Cathryn Hart. It was the first time I’d seen them in years due to Covid, so lovely to see their smiley faces again….hope you enjoy….

Penultimate meeting of the Pioneers in London….

Well it seems ages since I went and stayed in London. But the funding for the dementia pioneers is coming to an end, so some of us are meeting and staying  at The Royal Foundation of St Katherine’s. We can’t just let the end be the end so we need to reflect on the project and decide how we can encourage researchers to work as partners with people affected by dementia as a matter of routine.  You can read more about the Pioneers on the web site

And so to London…..it was due to be unseasonably warm in London and dry, yet throwing it down at home, so what to wear 😳?? I’d been in my winter coat at home but decided on a lighter jacket but really didn’t have a clue whether this would be ok, but I’d made a decision and decisions are very hard to make with dementia.

It was cloudy and grey as the taxi man’s txt came through dead on time at 07.30. I’d been up since 05.30; an hour to get myself ready and pack 😳 and an hour to catch up with emails as the day before had been chaotic sorting calendars to my American friends, attending Tea and Toast in the village to sell them AND biggest news of all, me and Anna finally finishing and submitting my third and final book 🙌. 

So today was a day of book free thoughts not only for me but for Anna. She txted me early doors to say she was looking forward to doing just what she felt like doing and going for a long walk with her adorable dog Tilka😍

I’d had very weird dreams the night before, the book still playing on my mind, stories churning over, Naga Munchetty, one of my favourite journalists, interrogating me and I mean ‘Interrogating’ 😂. The girls weren’t there as I was a teenager, but Anna was there 😳 and my mum and dad….as I said, very weird…….

I was on Hull Trains, my favourite train company and runs two services daily direct from Beverley to London, so no need to change😍 Their staff are also the most friendly. As soon as I got on, my sunflower lanyard in view, I immediately snuck my little case at my feet, but the woman came along and said I’d be uncomfortable with that there on the journey, would she like me to put it between the seats. I explained I had dementia and I’d forget it if it wasn’t in view and near me, so she immediately said with a smile:

Don’t worry, I won’t forget, how about we put it above your head in the rack, they’re see through so you can see it and I’ll get it down for you”

We went by the Humber, the sky grey and the last of any sunshine just starting to disappear as heavy rain was forecast

Simple kindness helps…….

The sky went from grey, laden with rain, to blue sunshiney as we approached the capital

Rachael from Innovations in Demtentia was meeting me at Kings Cross and Philly was meeting the others at their destination. I trust Rachael and Philly implicitly so I could just enjoy the journey without any worry. Rachael txted me at the beginning and I hadn’t realised my umpteen txts weren’t sending from my ipad 🙄 but then I suddenly went to my phone to send a txt for some reason and noticed they’d all piled up on my ipad 🙈…..I’d been proverbially ‘talking to myself’ 😂never mind at least I realised before it caused any pickle occurring.

Turns out Rachael was meeting me at Kings cross then we were heading to Euston to meet Amigo George and Maq who had travelled from the same area🥰

The train was miraculously on time as were George and Maq! Wonders never cease! After hugs and more hugs we took a taxi to St Katherine’s which seem to take forever. But there we were met by the lovely Philly, then Daithi from Belgium and Howard appeared followed by Steve and his wife Carmel from Ireland. What a lovely mix we made. More hugs, more gasps of how different we look in real life as opposed to zoom. People much taller, shorter, etc, but wonderful just to hug real people.

Lunch was a very lively affair amongst all the chatter of getting to know each other for real and catching up with others

But the dining room was very busy, very warm and very noisy. I tried not to be bothered but it became increasingly hard so me and Philly left the room to go to the cool work room. We were much happier there in the cool and more open space 😍

We continued the conversation about being so happy to be with one another, but then it was down to work, the table all set ready for us to start…

This was meant to be our final dementia pioneers event but we’ve got an extension until the end of February so we hope to have one final one before then where everyone can attend as today we were missing Agnes, Dory and Irene.

We still have the final cohort 3 research projects to be published . An awful lot of Deep groups have already completed their own research which you can find on our website

There’s been a total of 24 research projects with people with dementia in the driving seat. 

So we’re here to take stock, say what we’ve learnt along the way and decide what we can recommend to researchers so this inclusion continues. Because to include us as equals makes their research far richer and gives it that missing ingredient – lived expertise.

Jessica Kingsley have agreed to publish a book written by us on Dementia enquiries – looking at the values, the principals, what have we learnt since 2018 when we started. 

Some of our ally professionals will join us at various points during our stay. Philly’s son, Sam will be making a short film while we’re all here too.

We spoke first of the film we were there to make. A short 7-9 minute film to grab peoples enthusiasm to read the book. It needs to appeal to professional researchers/universities to encourage them to involve people with dementia in a meaningful way but then also appeal to people with dementia to tell them they can and are able to contribute in a variety of ways.

We want to show researchers/funders/ethics committees,  what they’re missing from their research by not having us involved. The power of mutual benefit. Academics need to let go of their academic persona to get the best out of themselves but also us.

Those high in academia tend to hold onto procedures and practices from the past and as Daithi said many don’t have professional humility. 

My head then started to implode and concentration became even harder. We did an awful lot of work in those few hours since our arrival but my batteries were running low so sadly no more typing…but I could still snap…a distraction to the ever increasing banging head that was forming 🙄

I realised through doing this, my first live written blog for quite some time, that I’ve lost those skills. I’ve lost the ability to type, listen and contribute 🙄. So maybe I’ll give myself a break for the next couple of days and stick to the blogs I’ve already written and set them to be published instead 🙄. Whilst I LOVE being face to face with my playmates , Rachael and Philly, I realised this isn’t a good venue for me. Apparently I’ve been here several times but nothing looks familiar. Maybe because each time I left with no positive emotion for the place 🤔. I don’t know where I am and feel as though there’s no open land around me so it’s a tad claustrophobic.

As I settled in my room, before heading down for supper, I spied a squirrel in the gardens below my window….suddenly I felt very homesick……😔

The Curiosity Partnership……

Yesterday I headed to York again, but this time for a conference. The Curiosity Partnership is a 4 year project to bring local authorities to work with researchers in developing social care evidence based services. I was quite surprised when asked to come here to find out that local authorities don’t work with researchers in developing social care evidence based services. Researchers are they to prove something doesn’t work as well as does.

I’d been asked by Mark Wilberforce, I’m part of his research team on the HOPE project at York Uni along with David, a former carer to his wife, and Laura Haviland, who is the Network co-ordinator for the Curiosity Partnership project from the Department of Social Policy and Social Work.

They’d asked me to talk about my experience of being involved in research, why it was important to include those with lived experience in any research and the benefits of doing just this.

I woke well before 4am and was toying with the idea of a quick early morning trundle but thought it best not to as I’d only get distracted and want to stay out 🥴 My taxi arrived early so I wasn’t whittling and worrying if it would turn up. The sky was glorious as we travelled through the village by the pond. I opened my mouth to ask the driver to stop as I saw Mr Heron on Teresa’s log, but I looked at my hands and realised I didn’t have my camera so closed it again 🤣….

I had twenty minutes before the bus was due so walked around to pass the time. St Marys looking lovely against the blue sky

As the bus pulled in, I sat downstairs for a change as I had my suitcase with a few books in case anyone wanted to buy one. Even though it was early, there was a queue of traffic as we reached the Westwood as all the cows had decided to cross from one side of the road to the other 🤣

I’d been typing all the way to York, so I was so surprised to see that we’d arrived as I looked up from my screen. I decided to get off in town and amble through to the hotel that was to be our venue for the day. I got distracted by a talented young busker playing a clarinet, I think! Then the rowers on the river..

Professor Yvonne Birts – the Curiosity Partnership Director and from York Uni greeted me inside the hotel, as did Laura and Mark. I was soon sat having a cuppa before settling myself at one of the tables.

Prof Yvonne welcome everyone and she started off the day by highlighting that for some, research is very new.

In 2019 the NHIR they released a call for ideas and the Curiosity Partnership was born. The slide of ‘what’s the story ‘ said it all

Yvonne then played a video saying the government had ploughed money in NHS health research but little into social care. It’s this that we now need to address.

Through research, creating a social care system the public can have confidence in…”

Work with us to create an evidence based system that works with our strengths…curious?…….is how it ended.

We had to introduce ourselves to our table neighbours while the techy bit of connecting to zoom for the first speaker was being faffed with 🤣 I was sat next to someone from Hull Uni from the business school who is part the Curiosity team.

Wendy Lowder joined us on zoom. I knew the name but couldn’t think where from….She was here to share her thoughts on the landscape of adult social care. She’s spent the last 19 years in local authority in adult social care. She was blown away by local ideas to bring about local change in deprived areas. Through Covid we had wonderful community support, people stepped forward, it was tough before, tough during and even harder to now recover in many communities but the ’community knowledge, the knowledge of ordinary people’ is still untapped.

She spoke of the long waits for social care assessments and the shortage of care workers. The upheaval this causes to family is unimaginable to many of us. Uncompetitive pay makes it difficult to recruit staff into these poorly recognised roles. There have also been many false starts and poor decisions made by successive governments to grasp the mantel and tackle social care head on.

Greater partnerships with the local community are the key to the success there is in Barnsley where Wendy works..

What matters to you in your neighbourhood?” they ask.

She asked everyone to reflect on the language the audience use in their everyday lives. “Challenging behaviour”, “Hard to reach people” are words that send her into despair. It’s simply about people for people, reducing beaurocracy, asking people.

She spoke of her mum, 94 years young, who they help live at home. But it’s not just family, it’s the neighbour who mows the lawn, another neighbour who cooks the odd meal and so many others who help her mum to live her life at home where she want to be. It’s not just about Adult social care, it’s about the neighbourhood, the community. People helping people.

I found it hard to keep up with all the words Wendy was saying and type at the same time, but her words were wonderful, her words were encouraging, her words work creative but most of all, for me, a future recipient of care, her words gave me hope.

Research is important to us as a community – finding out what works what doesn’t, can help us to make good decisions. If you as an authority are asking “how can we provide/improve/ etc……” then research is the answer.

She ended with a slide of her mum and the wonderful words of the social care future team…..that’s where I knew her from! and the words next to her mum are the words that made me want to work with the social care future team…

I asked her “what do you think is the number 1 priority?” A hard question obviously, but Wendy answered it perfectly. The priority is to get community of practice to bridge research and engage stakeholders and citizens in research – the lived experience is key to the outcomes of this 4 year partnership so we have to get that right first.

It was me next – I spoke of the research I’d been involved in that had been a good experience along with some that had been a bad experience.

I ended by saying:

The social care system is failing us at the moment and you’re pouring your money down a big gaping hole. How much better it would be to have the evidence first before opening your purse strings.”

Break time……for a cuppa and cookies. Many people up to ask questions, one young researcher about how to persuade people to work with her……I simply said:

Invite them to work with you as you need their lived experience expertise that you don’t have. There expertise is the missing link in their team. “

I must have drifted off as the final speaker started as I suddenly came round and didn’t know who he was or what he was talking about 🙈…..

Then he put a slide up

He said we people need to connect better – they need to know what each other does. What prevents them collaborating? Capacity – they’re not being given the time in their day job; there’s a massive time lag in funding, the lag is really long and there’s often a high staff turnover so once funding is there, different people are in the roles; after the funding ends the researchers have no capacity to work, no money.

Also if they did find the evidence, is there a thirst to implement – change is the hard bit. There’s a knowledge gap between theory and practice…..again, bring the academics in at the beginning not asked to evaluate something that exists. Loads of stuff is going on but how do you share the knowledge?
We have a skills gap – how do you separate the good research from the good quality and bad quality evidence. They need to present their finding in a more accessible way. Academic papers are required to be written in academic language that organisations won’t relate to.

Identifying skills across other disciplines that would help. At the moment different disciplines work in silos, when in fact they could be of use to each other.

The final man – from South America – very likeable as he wanted to walk about on the stage instead 🤣 he also made it fun…..what are the top 5 priorities

The priorities weren’t in any order …he kept putting his glasses on when talking academic language and taking them off for normal Language 🤣 His most important part of ‘place’ was

Especially the bit on the left that says, ’Do things with people rather than for people’

Soooo entertaining!

Just before lunch it was break out sessions and I stayed in the main hall for the “existing research” introduced by Mark Wilberforce. Emma was up first describing her experience of becoming a researcher. When she finishes her pre doctorate fellowship, she will go back to her normal job of managing a team in Direct payments. She thought research was just for academics. Her Pre-doctoral Fellowship has opened up her eyes and given her opportunity to go back and work in her own role in a much better, more informed way…the moment you realise your research is contributing to knowledge into new insights into direct payments practice it makes all the study worthwhile.

One of her participants thanked her for allowing her to share her voice and that made her realise

The next, Helen Weatherly from York Uni, spoke about the economic research into social care. ….trying to make economics people friendly in their language. Showing how ‘value for money’ ‘best way to spread the cost’ ‘ what do we achieve by spending the money’ . She stressed that economics is not about finding the cheaper option. It might be an expensive service, but the outcome far outstrips the cost and makes it worth the investment.

I was tending to drift off at this point. It was very hot in the room so I was now starting to wither a tad so not taking much in….🥴

The final speaker before lunch was an occupational therapist researcher, but I couldn’t follow his talk – I think because I was hot and tired as I love Occupational Therapists.

While everyone went to lunch, I sat in the quiet catching up with emails and typing and then quietly disappeared before everyone came back again……..a wonderful day of hope for the future of social care – lets hope all this talk will turn into action…..

Extra blog today….a request..

During my almost 8 years in the dementia world, I’ve met some amazing people both with and without dementia. Many of the latter have been academics and one such lovely friend is Prof Pat. we became friends years ago when I was a monitor on her study looking at the effect on children of having a parent with dementia. Pat herself had a husband with Young onset dementia who died recently and also had children herself so has seen the impact on her own children. You can read more here:

https://www.bera.ac.uk/blog/researching-the-perceptions-and-experiences-of-children-and-young-people-who-have-a-parent-with-young-onset-dementia

well since that study many moons ago, me and Pat have stayed in touch and I consider her a lovely bonus out of dementia.

Pat is now working on a different but related study and wondered if I could help spread the word and see if any of you were likely candidates and willing to speak to her. This is her blurb:

Are you at risk of an inherited dementia?

Do you or any blood relative in your family have a diagnosis of an inheritable dementia? If so, and if you are 18 plus, we would be interested in talking to you about your experiences and particularly about your thoughts on genetic testing with a view to better supporting people in this position. ‘We’ are Professor Emeritus Pat Sikes (University of Sheffield), Dr Mel Hall (Manchester Metropolitan University) and Professor Caroline Gelman (City University of New York). Our study has received ethical clearance from our institutions. If you would like to find out more, please email Pat at p.j.sikes@sheffield.ac.uk

Wendy knows that we are bona fide researchers with much (personal, professional and academic) experience in the field of young onset dementias generally and we are extremely grateful to her for carrying this call for participants.

If you’re able to help please do as this is such an important and rarely researched topic . Here’s a piccie of me and Pat together somewhere at sometime 🤣

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!”