Category Archives: Education

End of year visit to Bradford students…….

So yesterday was a mix of happy and sad…….happy because I was going to the final presentations by 3rd year PhD students at Bradford University and an update from 2nd years……sad because now my calendar is looking very empty for the long summer school holidays with the last Minds and Voices for the summer on Monday too….

I panic when I see lots of spaces on my calendar as I know I will have to try triply hard to keep dementia at bay. When there’s no stimulation, no visiting new people and new areas, dementia takes it’s chance, sneers at you and creeps up without you noticing.

As the world seems to fall silent, as twitter playmates halve, emails fall silent as the long summer break takes hold.

Many people long for the summer and a break from work, a welcomed holiday, a break from routine……I don’t….it happens every school holiday, quite rightly, but the long summer ones are the worse…..yes, I know I can plan lovely days out in my favourite place, but they’re usually there for relaxing and recharging from all the busy days. I can still enjoy them but I don’t have the writing and planning for events in between to keep my mind active…… that’s the looming missing link. Maybe something will be snuck in by somebody…..

Anyway, back to yesterday and the happy event.

I woke to find the sunshine appeared to be having a break today as it was grey and much fresher than the sultryness of late.
My favourite taxi driver picked me up on time and even the trains were on time😳
Today I was attending the Doctoral Training Centre as an Alzheimers society Research Network volunteer as we have been monitoring these students since they started.
My playmate Sandra had chaos on the trains so txts flew backwards and forwards with updates

Anyway, arrived to find a lovely set up courtesy of their Administrator extraordinaire Giorgia

And after lots of hugs and catch ups Barbara started off as chair.

The room was made up of 2nd and final year PhD students and many were giving presentations today.

We congratulated Murna on her amazing award from the Society of Gerontology ???? – I think!
But no one better could have received it.

We went onto do a round the table with introductions followed by what has worked and what hasn’t in the last 12 months for the students.

In turn they spoke of their achievements but also their challenges, which ranged form gatekeeping by staff, learning that writing something, then editing, is better than writing nothing at all.

Lovely to hear their enthusiasm right from the start…..

Then we had the presentations – first from Courtney, who I actually helped interview 3 years ago and who I’ve been working with since……….the aims of her research was to create a model of dementia friendly emergency department…….

The current model isn’t working as many of the older generation have complex health needs.

She went through her finding of what is currently working and what isn’t in the A&E department which was really interesting, especially the use of the words, demented and senile being used!!

The people with dementia most at risk are the people who are independent or semi-independent, especially if communication is a problem. They may want to walk about but aren’t allowed and can’t verbalise to staff. Courtney watched 3 people with hip fractures tried to get up and walk………..this was because spinal block was being used for the pain which doesn’t work for people with dementia as it numbs the pain totally and they probably had morphine in the ambulance so have no pain or feeling of a fractured hip…… Katamine is the preferred option as it deletes the pain but not the sensation that something is wrong…….great learning point.

One sentence on a slide really struck and impressed me….

Dementia can no longer be treated as a specialist area”

Every clinician should know how to treat, communicate and understand people with dementia.

As Sandra pointed out once again…..

“If we get it right for people with dementia we get it right for so many others”

Helen, a 2nd year student, was next………

Her research focuses on experiencing dementia as a woman living alone….there are no gender differences in policies. In dementia strategies, there’s no mention of gender differences and the experiences having differences.

Helen is specifically looking at women from lesser heard groups…..who live alone at the time of diagnosis. The difficulty in recruitment was understood but Helen had good ideas of where she was going to look and who to approach to help.

She will be carrying out narrative research, not interviewing. Instead listening through life story discussion. Using prompts will facilitate conversation.

Through her reading, she found how when a woman cares for a partner, she gets less support than a man in the same situation…….

Cuppa tea and lunch time and I sat alone drinking my cuppa and eating my tuna sandwiches very happily as there were too many conversations which are too hard to follow……but across from me 2 students were talking about interview techniques and one shared advice with the other, for which it was a wonderful light bulb moment….I just love that they help one another, share ideas, share good practice with no one being precious……just says everything about the culture at Bradford DCT…….

Denise was the final student

She’s in the final stages of write up and will submit 10th August and will have her Viva 27th September!! Amazing

Her research was all around daily life with dementia and co-morbidities in couples and the relationship changes that may occur. Spouses go through a redefinition process of their relationship. Denise believes we need explanatory work rather than exploratory research.

Identities can co-exist so one day a spouse can say, yes, I’m his wife and on another say, ‘yes I’m his carer’. This is why its important to provide a holistic theoretically informed research approach.

It again got me thinking how the social model of care works far better with dementia than the medical model. Giving spouses coping strategies to cope with the eventualities – as to deal with them badly can lead to worse problems and confusion than if given a method which might help.

Systems often force the word, carer’ onto spouses…making the relationship change without the belief in fluidity. One day my daughters care for me because I have dementia but the next day I’m a mother advising them – fluidity of roles…..

We finished with ideas for dissemination and as well as the usual academic journals…..there were ideas around webinars, videos, Alzheimers society promoting, soooooo many ideas, it was a wonderful way to finish off……

Once everyone left the research volunteers met with Jan and Murna…….we all agreed how we need to do more to get their research become reality as some of the findings were brilliant and easy to implement……we need to find the influencers who can make the change happen……..

Me, Sandra Barker and Sandra Duggan have been the research network volunteers for the last 3 years at the DCT, which has been wonderful and we’ll hopefully continue with the second year students until they finished….

Today reminded me why I love being involved at Bradford so much……..the culture, the atmosphere, the enthusiasm, but most of all…..the people…..

As for my journey home……mmmm well enough to say, my twitter friends kept me company🙈

Celebrating the NHS……Happy 70th birthday

Yesterday I was asked to do 2 talks at the Health Expo in Hull to celebrate the 70th birthday of the NHS. The lovely people at the local research team had agreed to pick me up and take me home afterwards. I was due to do 2 small talks at 11 and 1 and have a space to sell some books………

Katie, from the research team, picked me up as promised and we drove to the venue in the centre of Hull. Alison – organiser extraordinaire was waiting at the door for us. It was packed already and Carly, one of the organisers, showed me to the table they’d left me for my books to be on sale. It was right next to the Alzheimer’s Society stand – wish I could remember their names🤔 – but it was nice to be next to them. At the other side was a group of nurses knitting fidget thingys……

The best bit of all was getting this voucher when I arrived….I gave Katie my lunch voucher. After all, who needs lunch when you have tea🤣😂🤣


😍😍😍😍😍😍 very happy….

Katie was helping me all day, so I was able to leave my books and go and have a look round. It really was amazing to see so many stands and people. I met people who I knew ….apparently….🙄 including these 3 nurses – wish I’d got their names🙈 but they were lovely and smiley…

And my lovely playmates from the local research team were also there….


Lauren and Alison…😊

 

Lots of school children filed through as well, which was lovely to see. You could see them collecting leaflets for projects and went away with many freebies, much to their delight 😊

I particularly like the huge long timeline of events display showing landmarks in the NHS…we were given a smaller one in our packs…

It was nice to be able to give my talks, but they’d put me in a very busy, very noisy bit🙈🙉. I sat at a table and talked to people. The people who came were very nice and asked lots of questions so I can’t ask for more. I did that twice, but was ready for home by the end of the second one as my head was banging……

So Happy 70th Birthday to a British Institution we take for granted far too much….it’s a victim of it’s own success. But if this great institution is to survive the public and the government have to do their bit. We’re destroying the NHS from both ends of the scale.

The public are using the emergency department as a convenience instead of considering other options. Gp, Minor Injuries and especially Pharmacists. When I was in the Lake District and my hands doubled in size, I was told to go to A&E – I didn’t I went to the pharmacist, who immediately sorted me out. They’re very underused for their expertise.

The culture of over indulgence of alcohol which in turn leads to more pressure with alcohol related visits to the hospital must be reduced.

But more importantly the government has to fix the crisis in Social Care. The hospitals are mending people but then can’t discharge them due to the lack of funding in Social care.This has to change.

We’re putting so much pressure on staff that people no longer want a career in the NHS. We’re destroying this vital, world renowned, institution. The government must invest far more and the public need to think before they use this wonderful service.

Just think for one moment where we would be if we lost it……….

Speaking Local for a change……

Yesterday found me heading for Hull University, School of Health and Social Work.
I’d been invited some time ago by Emma Wolverson, a Clinical Lecturer and Clinical Psychologist,  to be their first speaker for a season of talks to SPARC (Social and Psychological Research in Long Term Conditions).

I’d worked with Emma before and we often bump into one another, being local! It was a lovely change to have a short drive instead of being reliant on public transport. Emma had agreed to pick me up at 12 so we’d have time for a cuppa or 2 before and was wonderfully on time 😊

We made our way from the car park to come across 2 other people who’s been instrumental in me being their – both called Liz! We were soon joined by Caroline who had the unenviable job of sorting out paperwork for the finance department…..why do some universities make it so difficult? I’ve done work for Hull Uni before, have the same address and bank details but you still have to go through all the rigmarole again…..crazy, but thank goodness for Caroline as she was taking wonderful care of it all.


Left to right piccie of Rebecca, Liz, me, Liz and Emma….

Anyway, I digress……we had a cuppa before heading to the lecture room, where people were beginning to arrive. The audience was made up of many different Healthcare professional and students – social workers, students, mental health, clinical psychologists…….wonderful to have a diverse range.

On screen behind me was the cover of my book, which was lovely……
After a lovely introduction from Liz Watson, I began my story and included 2 readings from my book.

I spoke of my personal coping strategies, the importance of talking and language used by healthcare professionals……at one point I said:

We all know too well there is no cure for dementia. The medical model of diagnosis will focus on this fact. How better for healthcare professionals to adopt a more social model of prescribing. They’ve made the medical diagnosis, through their skills and expertise, but now concentrate on the person and the life they still have.”

After I’d finished there were many wonderful questions….and I just remember my response to one being around supporting families to talk to one another as it doesn’t come naturally to everyone. How we need to move away from diagnosing the individual to delivering the diagnosis to the whole family. To help and support them all to come to terms with the diagnosis.

It was a wonderfully warm atmosphere with many kind words and generous comments. I believe it’s important to talk to as many healthcare professionals as possible because if we don’t talk about the lived experience, how can we expect them to understand the reality? Academic books can teach the theory but not the reality ……I feel lucky to be given the opportunity to do just that….

My book is now on the reading list at Hull Uni for Social Work, Mental Health and Clinical Psychology students…….very humbling and very grateful to those who had the insight to place it there…..

Liz presented me with a pressie once I’d finished that included my favourite item and even a pressie for Billy – wonderful😍

Bradford Literature Festival…..

So yesterday I was lucky enough to have been invited to be on stage at Bradford Literature Festival. I would be on with 3 people I knew, Prof Murna Downs. Jules Montague, Neurologist, Simon McDermott (Song a minute man) and me……We were being interviewed about our individual work by Colin Philpott.

The event was due to be at the Dye House but on the journey there, trying to find a piccie for this, I suddenly noticed they’d changed the venue😳 and it was now at the Advanced Technology Centre🙈 – will have to start a new plan on the train for how to find it……good job I noticed🙄…slight churning of tummy……but it was a sunny day…..🙄

Back to the trundle… the first 2 trains were on time and the Humber looked glorious in the sunshine….

Naively, I thought the trains would be quieter on a Sunday lunch time……wrong ………very busy, very noisy🙉……..shoppers, party goers and people returning from a weekend away maybe……don’t think I’ve ever been to an event on a Sunday before……very different people on the trains, no suits, more t-shirts and jolliness, except for the heat of course…..no one likes travelling in the heat and Sunday travel is never quite as straight forward. Even our ticket collector was asking if people were returning today as some trains had already been cancelled and the train to Bradford was a very old train…..with wooden rescue ladders….😳

Anyway got to Bradford and set google maps to find my hotel…….not realising I’d set it to drive instead of walk😱…….and it took me all over the place and I got in a right pickle….😩but found it eventually just looking for the familiar sign…..it should have taken me 5 minutes…….20 later, I found it🤐..room not ready…..😶..so, determined not to get stressed I sat in the lounge tapping away on my ipad and playing solitaire….

Once I’d check in and had a cuppa or 3 in my room, I walked over into City Square to check the venue location and a nice chappie printed me out a map. I went back to my room for a few more cuppas before making my way over to the Alhambra Theatre, where the Green Room was situated and where I hoped to meet some of the others.

As luck would have it, Colin Philpott was already there and we chatted about this and that until Jules arrived and it was time to make our way to the venue. Murna and Simon were already there and the audience had also started to gather.

After more hugs and catch ups, it was time for the mikes to be fitted and time for a piccie…

Before we knew it the audience were being allowed in and we were off. The mix on stage was wonderful; me living with dementia, Simon who cares for his dad, Jules the Neurologist who specialises in diagnosing those with Young Onset and Murna Downs, Professor of Dementia Studies………….

Colin started off by asking us each in turn about our books before asking us three general questions. I didn’t type so not sure of everything we spoke about but I know I kept referring to the smiley face…..how a smiley face eats into no ones budget; how a smiley face can ease a thousand worries and how I always look for a smiley face if I get in a pickle, in the hope that they’ll help me……I must have had smiley faces on my mind!🤣

There were lots of questions from the audience and it was over in a flash. Many people came up and said kind things afterwards and we were able to sign the books people had bought.

I felt I went back to my hotel with armful of hugs and kind words…….

It was another lovely occasion also made possible since my diagnosis of dementia……..who would have thought eh?

The Goldfish Bowl Experience……

Yesterday saw me trundling back down to London 🙄 and I knew it would be a stressful travel day as Northern Rail were holding the 2nd of 3 strikes this week😳 and Hull Trains, who I’d booked to travel with had also been cancelling services due to breakdowns🙈🤯😱

Anyway, the day started off well as it was sunny and the taxi was on time…..amazingly then Hull Train arrived on time 😀 – well the amazing fact was that the train was working! But the plug sockets weren’t working…..so no plug for my ipad or phone, which always makes me anxious…..but kept telling myself the sun was shining….

I was heading for London to take part in the First ever Young Dementia Research Conference at the Dementia UK Headquarters. I would be a double act with Hilda Hayo, CEO of Dementia UK who is also a playmate on the Young Dementia Steering group, of which I’m a member.

I’d asked if we could do a Goldfish bowl discussion……..people with dementia would sit in a circle surrounded by researchers. There would be 1 empty chair. Hilda would facilitate and we’d discuss why and what research was important to us, as people living with the disease. If anyone wanted to ask a question they would have to sit in the empty seat.
My way of looking at this, is that it keeps questions to one at a time – 😇 I’d done this previously with Piers Kotting for Join Dementia Research and it had worked really well, so we shall see!

We arrived into a bright sunny London and, map in hand, I found my way to the venue where I was met by my lovely dear friend Professor Pat who helped me find the tea table. We email very often but havn’t seen each other in ages, so it was lovely to catch up.


Pat really isn’t that much smaller than me – she was kneeling down next to me!

Jackie started off the day by saying this was the first Young Dementia Research Conference for the research strand of our steering group, of which I’m one of the members. I loved the title –

“All in it Together”…..wonderful….

The aims of the day was to discuss priorities of people with dementia of what should be researched.
What as a community could they take forward to strengthen YOD research.
And finally where and how can we work collectively around YOD research.

Jan then set the scene, which enabled the talking to immediately begin as we talked around our tables about what we could get out of the day…….a great start before a short break where a catastrophe occurred in the proceedings………they’d run out of proper tea bags and just had pretend tea left😱🤯🙈😳…..I didn’t get a cuppa😔

But my mind was taken off the crisis as it was the turn of me and Hilda doing the Goldfish bowl. There were 6 of us with dementia and one persons wife……


Hilda getting us all ready…

Today finally gave me the opportunity to finally meet Tracey Shorthouse, who lives with dementia and is a Twitter friend. Keith Oliver was also there along with wonderful new playmates who had rarer types of dementia.

I first of all gave a short ramble about my personal experience of research. I ended by saying:

Imagine a world where the stigma associated with dementia no longer exists, where healthcare professionals are trained appropriately and where people understand dementia. Without research we can’t change the future and today is the perfect example of how people with dementia and researchers can help each other and work together”

We started by me rambling and asking the others to contribute, which they did wonderfully.
I didn’t type during this but I remember saying at the end how we must get away from focusing on diagnosing the person with dementia only and instead focusing more on delivering that diagnosis to the whole family and supporting the whole family on how to live with that diagnosis.
Many researchers asked questions during the session and we ended up having to cut short as too many hands were in the air as our time was up – I think it went well…….but my anxiety was rising about the journey home and no tea to calm me down🤯

It was then the turn of Dr Keri Yong to talk on the ‘Collaboration with people living with posterior cortical atrophy’: promoting research and awareness.

He spoke of the symptoms of PCA and played a short film of a woman with PCA describing a picture of Brighton Pier and the beach. It was striking how the person’s focus flicked from the detail, thinking it was a car park, maybe a building site before seeing the sand and mentioning it might be Brighton. They experience diminished visual function. Things that are close together merge and appear as clutter or a blob.

He showed the strategies people had devised – marvellous.

I liked the clips he played of different people – one reading and showing eye movement flicking all over the page…….a very good way to get across the reality instead of presenting in a purely academic fashion…he showed clips of people trying to find a door in a room but only from a purple circle which represented her eye movement….

Finally before lunch and before I had to make a swift exit, we had a presentation by Dr Mary O’Malley, an early career researcher talking about the real experience of researching Young Onset dementia. Another good presentation as she started off with a piccie of her and her dog 😍 She researched into Spatial disorientation in Young onset and the effects of the environment.

I had to leave sooooo early due to the train strike……which was very sad as I missed so much good stuff…..including the launch of the book ‘Young Onset Dementia’ by Hilda Hayo, Jacqueline Parkes and Alison Ward for which I wrote the foreword!

Being the first conference, I really hope people completed the feedback forms, otherwise how can we make it even more special next year…..?

My only negative feedback on this wonderful first conference was the distinct lack of tea……..one tiny teacup left me seriously dehydrated 😂……I’m sure it won’t happen again…😉

An Invite to Norwich…….

On Friday I headed off to Norwich for a lovely event and chance to read from my book and talk about living with dementia.

Norwich is not the easiest place to get to…….a bus and 4 trains😱 and Saturdays are usually ‘me’ time. However, I’d been asked eons ago by Bryony Porter – one of my favourite species of humans, a PhD student from Norwich University. I spoke at the University last year some time and now Bryony had asked me to Norwich to celebrate my book at a different venue. So how could I refused? I knew she’d sort everything for me, so I was in safe hands.

She’d had a conversation with a group of volunteers who run a Cognitive Stimulation Therapy (CST) groups in the community in Norwich. The group is called The Forget Me Nots and Bryony has been volunteering for them for the last 2 years now. They also run another group at HMP Norwich Prison. Their aim is to improve lives of people with memory difficulties and their partners in care through group Cognitive Stimulation Therapy. They’ve also won an award for their work at Norwich Prison.

Anyway, everything was agreed and Friday saw me wending my way, testing the rail transport once more……🙄 Brony had kindly agreed to meet me at Norwich station along with Judith Farmer, a retired mental health nurse and Lead Volunteer for the group, and had sent me the required photos so I don’t go off with anyone! Ha!

And the first thing we did when we met at the station was take a piccie of me and Bryony and the welcome Norwich immediately presents….

We then had a scenic drive to the hotel via the Octogan where I’d be speaking on Saturday. It was beautiful and so peaceful even though we were in the middle of Norwich. It had an amazing ceiling

And was very tranquil…..

Before they left Judith showed me the garden and made my day. In tomorrows blog, by pure coincidence and written last Friday, long before my arrival in Norwich, I mention the rose variety, Peace, from my childhood….. and……. as we turned the corner, there it was. An old Peace Rose bush in full bloom…..

Read tomorrow blog for the significance…….

We then drove to the hotel on the outskirts of the city and agreed a time for them to come and have breakfast with me the next morning. It was then a very strange thing happened….😳…..I looked at my weather app to see the weather for tomorrow only for it to tell me I was in ‘Keswick’ 😳🤯……….I thought the map had gone wrong until I spied the title…….Keswick, Norfolk………well I never…….

The following morning, over breakfast, a woman came up to the table just to say hello. She was staying there and noticed me sat at the table and had to come over and tell me she was in the middle of my book😳……..how random……..but a good start to the day……

After a lovely breakfast, we drove to the venue to be met by some lovely members of the group who already had the kettle on⭐

They’d set up a lovely display of my books, as the local bookshop had provided 20 books to sell, just in case anyone wanted one and cut one of the Peace roses from the garden❤

People then began to arrive – far more than we expected……one couple had come because their daughter from Brighton had seen it on Twitter! They were all welcomed with homemade cakes and a cuppa by the Forget Me Not people.

Once everyone had taken their seats, we closed the main doors to allow the wonderful acoustics to shine so I didn’t have to use a microphone.
Danuta Lipinska, introduced me with such beautiful words and I began my 2 hours of talking, reading and answering so many questions, I couldn’t believe how quick the time went!

It felt like I was in a roomful of kindness and in the most beautiful peaceful setting. People made such nice comments. I obviously didn’t type but I spoke about anything and everything.


Someone has just sent me this of me and the Forget Me Not Volunteers…..😊

To finish off the day, and once everyone had left, the Forget me Not volunteers all stayed and we had a picnic in the peace of the wonderful Octagon.

I think the embroidered banner hanging high from the balcony in the Octagan said it all


Have Hope – perfect😊

What’s more, they paid my expenses there and then…..in cash……what more could I have asked for. Oooo and we sold all the books!
Wonderful company, in a wonderful venue with people from all walks of life….I was convinced I had piccies of everyone else but they seem to have disappeared as I would have loved to show you their smiley faces…….🙄

Words do matter when delivering a diagnosis …….

Todays blog is quite simple for me as I’ve already written it. Psychology Today asked if I’d like to blog for them. I agreed for the simple reason, it gives me an opportunity to think and write.

Language has long been a bug bear of mine since my diagnosis. The language used by and the body language of the healthcare professional giving that diagnosis, of whatever condition , but in my case, Young Onset Dementia  – the language and body language determines the state of mind of that person as they walk out of the consulting room.

Here’s the link to the piece I wrote for Psychology Today……

https://www.psychologytoday.com/us/blog/which-me-am-i-today/201806/delivering-diagnosis-dementia

Words Have Power Concept – Courtesy of my dear friend Google…..

A WOW afternoon at the village school……

Well, what an amazing afternoon I had to finish off my week of Dementia ACTION!

I’d been contacted by email by the village school headmaster, Chris Bullough, a few weeks ago. The children had been asked by Dementia Friendly East Riding if the school children would like to be involved in the colouring of forget me nots for Dementia Action Week.

However the headmaster didn’t just want it to be a colouring exercise without the children understanding why they were doing it , which is where I came in.

I went to talk to the headmaster and told him my ideas of making all the children Dementia Friends, from the youngest to the oldest. We agreed that I’d run 3 individual sessions, changing the session as the children became older. Beginning with a simple ball of wool to explain to the youngest, adding fairy lights and Q&A as the children got older.

Well yesterday was the day…..and oh, what an amazing afternoon I had.
I couldn’t have imagined in my wildest dreams how wonderful it was going to be.

I arrived to find Mr Bullough, the head, putting the finishing touches to an inspiring wall of forget me nots. Every child had their forget me not displayed


Their wonderful wall of Forget Me Nots……❤

The school then earned one of my much prized brownie points by immediately asking me if I wanted a cuppa tea⭐

I got everything out of my bag, including wool, scissors, ACTION slips, Dementia Friend stickers and most importantly, my notes!

The first group of children then filed in……the youngest……so small, so smiley so wonderful. Little sponges waiting to fill their heads with knowledge …..

I began:

“I want everyone to point to their legs……..if you break your leg, it’s very hard to walk isn’t it?

Now point to your ears…………..some people have a problem with their ears and find it difficult to hear

Do you know where your brain is?………..well we can’t see our brain as it fits snuggling inside our head

Hands up if anyone has heard of dementia? Does anyone know what it is?

Some people like me, have a brain disease called dementia. It’s not catching like a cold so you can’t catch it from me or anyone else.”

They all were desperate to answer my questions and hands were going up everywhere….

And then I asked for 3 volunteers to help me with the wool…….well all their hands went up….❤

I got 3 of them to hold out their hands while I wound the wool round and round until we had a spiders web……..this was their brain, I said, working perfectly with no breaks……
Then I took my scissors out and I could see their eyes get larger😳……I told them that when they run, their brain helps them whereas…..SNIP…….that bit of my brain is broken and my brain doesn’t talk to my legs properly if I want to run…….

And so it went on until I asked for my brain back, while my volunteers sat down……..we finished their session talking about what they can do to help people like me, and about their action cards leading to them to a sticker to take home and show their family and friends.

They were wonderful for ones so young. We’d agreed beforehand that the school and me could take photos after each session, first making sure any who didn’t have their photographs taken were out of shot.

Here are the youngest

Then a slightly larger variety entered the school hall! I went through the same process, using different words and example and this time I also had fairy lights around my neck to show them how sometimes my brain remembers things and sometimes it doesn’t – a loose connection and how some lights don’t work at all, like the ones that mean I can’t run or cook………

Again, their concentration and little comments were fascinating to watch and hear.

Another wonderful photo in front of the Forget me not wall……..although they were so tall, you can just see me at the back!

So finally, the last group walked in. After the first group, these appeared to be giants…..😳
I used the same format but used different words. Even when I asked the same question that I’d asked each group:
“Does anyone know what dementia is?” the answers were informed and accurate – ‘Diseases of the brain’ said one😳 I wasn’t expecting all their answers to be so spot on – wonderful🙏

With the eldest, I spoke at the end about the challenges in life when things don’t go to plan, but thinking positively about what you CAN still do helps. We had a Q&A session. Well, they staggered me and I was blown away by their questions. Asking when I was diagnosed and do I live alone or have help………

I’d been asked to bring in my book and they asked the most fascinating questions , one in particular asking if I had any help writing the book. So I told them about my relationship with my co-writer Anna, and how, even when bad things happen to any of us, there’s still things we CAN do and with a little kindness from others can achieve great things.

I remember being impressed by their interest, their intelligence and their compassion.

The last photo of the day and we’d learnt from the last one that I needed to stand in the middle to be seen! And Mr Bullough joined in this time..

And one with thumbs up for all they’d learnt

I was left feeling hopeful, hopeful for the future, hopeful for the village that these young people would grow up not afraid to talk about dementia and what a wonderful blog to end the week…..

The most poignant moment of the day? Well that was at the start, when the youngest ones walked in and one small girl had been clutching a posy of forget me nots she’d brought in specially from home…………😍☺

A WOW ending to a WOW week……..

The First Class of 2018………

So yesterday was the start of Dementia Action Week 2018. I was trundling off to York for a fitting start to the week as it was the Graduation Party for Minds and Voices and the folk who who gone through our 6 week course – A Good Life with Dementia – designed and delivered by people with dementia ably assisted by Damian Murphy, without none of which would have been possible.

Due to the recent changes in bus timetables I could no longer catch my usual bus to York as it would now get me in too late for Damian to pick me up and have time to set up. So yesterday I was up at daft o’clock and had to get 2 buses 🙈……it might now mean that a trip to Minds and Voices is a luxury rather than a monthly visit😐

Anyway, a chirpy taxi driver arrived to take me into town on a misty murky morning and I set off on the first bus of the day. Even the cows were finding it hard to find one another as a lone cow was eating alone on the Westwood …

As the bus trundled over the wolds to my first destination of Pocklington, the sun was desparately trying to burn away the morning mist

By the time the first bus arrived in Pocklington, the sun was shining and the sky was blue and I waited for the next bus which was going to take me a different way to York🙄 apparently a scenic route through the villages..…….and we did…..we even ended up going round York University, which was a welcome surprise……..

So I had an hour or so to kill, so I ambled along watched the rowers getting ready for their morning outing, before heading to the station where Damian picked me up as planned…

We arrived to find the tea urn in situe and nice and hot so we me and Damian had an early tea break before we set up the tables………….and set the world to rights…….but it wasn’t long before new playmate Howard arrived followed by lots of others…..we were down on our course people due to illness and holidays, which was a shame, but there was still hugs and laughter before we started but there were still 3 of our wonderful new playmates there……

We’d never had so many people around our table before!.. Charlie said we should be rechristened ‘New Faces’……….as we’ve never had so many round our table.

Damian welcomed everyone and we went round and said hello

This week was asking how it had gone and going through the highlights.
Damian then went through all the wonderful comments that had come out of each session of our course

“I can’t find the words, but it makes me happy…” said Peter at the end of last weeks course….

“Our course was about learning more about dementia from people who are living with it.”

“Learning well to live with dementia is not what doctors can provide” they say scram whereas we can say hello, come and learn from us…….said one member

“Since joining Minds and Voices I’ve met more people, more friendly people than I could ever meet” said Stuart “I’m not worried about dementia…….”

I said that the problem is we don’t know what a poor service and what a good service is. Sometimes, if a poor service is all we have experienced, that may appear to be a good service by default….

“My wife learned so much from another wife as she leant to leave me on my own”…….said Howard…….”It’s made my wife less stressed”……

“It’s good to know I’m not alone” – Barbara said when going through our individual symptoms.

Tony said, when talking about how to get rid of hallucinations…….”Get your wife to sit on them……”🤣😂🤣

Liz described dementia as……. ‘It’s losing nerve cells in the brain” and “Carry on regardless”⭐

We have so many people in the room at all stages of dementia and each played a unique part in this course and in this day……

“It’s not the dementia which makes us suffer it’s the world around us that causes us problems….”

“Even though we are losing brain cells we have plenty in reserve”……

I’m forever saying, ‘We don’t know what we don’t know” and we found in the Market Place session, that no services advised on benefits and how to do it – how do we know what to ask for if people don’t tell us………….

“This is a far better way of learning”

Marvellous comments which says it all…….

We finished off with presentation certificates and photos and then finally a Class of 2018 photograph………magic


Wonderful – new faces and old joined together through dementia….

I’m so proud of our course – tutors and those taking part. W

If any of you are in the York vicinity on Wednesday 23rd May at noon, please go along to the railway station and see all my playmates involved with the unfurling of our Right To Get Out and About banner…………

Now to London for 2 days…….

Flowers for me, treats for Billy………ha!

Last month I did the first of 2 ‘Lunch and Learn sessions for Dove House Hospice. On Tuesday it was the turn of the second.

I love going to Dove House as the staff are so wonderful (including my daughter Sarah who is a nurse there, so no favouritism – ha!) and the place itself is so warm and welcoming.
The main plus is that they always have a cuppa ready, so brownie points always given……

Anyway, Tuesday arrived and Sarah was driving me. It was a lovely sunny day and I couldn’t resist taking a piccie of the town cows lazing on the Westwood as we drove past…

They’d put bollards in front of a parking space for me as they were expecting lots of people again. We were met by Sister Diane in reception and after a hug we went through to the room for a cuppa tea.

Last time included a team day but this weeks session was simply people who had taken the trouble to book on the session. There were many people from outside the hospice and from many different Healthcare Professions, which was wonderful. A District Nurse had come all the way from Cambridgeshire, which was very humbling.
I signed the Library copies of my book and insisted on a piccie to prove they had some – ha!

Once everyone had got their lunch and taken their seats it was time to start……
I started by saying

In your studies, many of you may have read academic books about the theory of dementia. About how the brain works and the differences in the types of dementia that exist.
But the academic world often fails to recognise and understand fully the reality of living with dementia, and how can you, as Social workers, appreciate fully the challenges of daily living without listening and reading about the reality from myself, a person with dementia, and from a supporters perspective as well”

I had 45 minutes, so rambled on about anything and everything – the myths, adapting and a section on language, before finishing with a couple of extracts from my book – one of the reality of disorientation and finishing with a humorous story of Billy the Cat……..

People were ask to write down a memory they would NOT like to lose and once again we had a full board…..

They kindly gave me some lovely flowers as a thank you at the end AND a packet of treats for Billy, which was hilarious….

It seemed to go down very well and many many people came up afterwards. I’d only popped 2 books in my bag in case anyone wanted to buy one and could have sold many more, which was annoying! But hey ho, lesson learnt……

One social worker came up afterwards and said:

“I’ve learnt more about dementia in the last 45 minutes from you than from any healthcare professionals I’ve listened to”…………

It’s comments like that , that keep me going……….