Category Archives: Education

I’m not declining into an old woman……

Some of you may know that I’ve been acting as a consultant, advising the cast of theatre production of Still Alice.

I worked closely with Sharon Small who has taken on the challenging role of Alice and Eva Pope who plays ‘Herself’.

Sharon said to me recently how one piece of advice I gave her has stuck with her and helped her enormously. During the very first rehearsals at Leeds Playhouse earlier in the year, Sharon was struggling with the decline aspect so she started to use a walking stick. But I said it looked all wrong as she depicted an ageing person. She was becoming the hunched up old woman.

I said:

Im not becoming an old woman I’m cognitively declining.I wobble due to my gait changing, not because I’m getting older. My balance is effected due to the signals from my brain, not because I’m getting older”

Light bulb moment for Sharon and one which has stayed with her ever since.

Maybe that’s why many question our diagnosis because we’re not the right image in people’s minds? We don’t have the wrinkly hands, the sad ageing faces as often depicted in the media. We have smiley often young faces. The photographs of us all in Dementia Diaries show this clearly. Take a look:

Yes we all have days of tears, sadness and frustration but doesn’t everyone? Isn’t that simply life? We have the added tears, sadness and frustration caused by dementia on top of life.

What helped Eva, who is playing “Herself” (who shadows Alice during the play and who speaks her inner thoughts) was the conversation we had about my Inner-self. I frequently talk to my old self and ask for advice, she’s a reassuring presence for me. This helped her understand her role better.

Both actors have succeeded amazingly well but not only been due to their unquestionable acting skills but also due to the fact they listened and learned. They wanted to get it right.

So many others should take a leaf out of their book and…, listen and learn?


Three more wonderful opportunities…….

I get into trouble for announcing events before they’ve been publicised so was sure to check the web sites of the three I’m mentioning today to avoid a slapped wrist…….🙄

It never ceases to amaze me what wonderful opportunities have come my way since being diagnosed with dementia….and since my book came out, it’s opened up even more new and exciting adventures..

The first to tell you about is the Off The Shelf in Sheffield

I’ll be there on Saturday 13th October at 2pm. More details can be found on their web site:

The second is the East Riding Festival of Words. Didn’t have any excuse to refuse this one as it’s a village bus ride away!
I’m there on the 18th October at 2pm.

More details on their web site:

and how wonderful to see a banner flying on my own local town high street with a picture of my book – made me very happy ❤️

Finally a FREE event for anyone who lives anywhere near Hull or Beverley in Yorkshire and Humber. The Humber Recovery College announced it’s new season of free workshops and me and Cathryn Hart from Humber NHS Teaching Foundation Trust are running two workshops. ANYONE is able to attend – healthcare professional, family members, people with dementia or simply, anyone interested.

Our sessions are on Thursday 15th November 10-12 at Beverley Library and Thursday 17th January at Hull Library 10-12

A FREE Workshop to explore ways can live better with dementia and be better supported. Not everyday healthcare professionals have access to such a valuable resource……and FREE

More details for this om their web site

My Employment Experience in the New York Times

Who’d have thought I could write that title………

At the weekend, I had an amazing surprise when the New York Time published an article on employment that they’d asked me to write some time ago. I’ve learnt that these things often take ages to come to fruition but it finally happened on Saturday.

They’d asked me to write about my employment experience, once diagnosed, and I hasten to add MY experience. The whole process has been well documented many times, but I found the experience fascinating as I had to rewrite sections and change wording to fit in with American writing.

Now I don’t usually read the comments section on any article I write, as I’d often been warned not to, however curiosity got the better of me as I wanted to see it from an American perspective. There were some very kind comments but also the usual disbelief in the fact that I can possible have dementia and write.

One said:

“I am a little suspicious when someone writes a book about their dementia and continues to work. I just wonder if her condition really constitutes dementia.”

I so wanted to respond but couldn’t work out how. Sometimes I wish I couldn’t write. People might believe me then. But I love writing so much and write oodles every day just to keep dementia outside my fingertips, because I am fearful of losing that ability.
I wanted to say that my SPECT scan obviously didn’t show the sluggish area which signifies dementia….my memory tests must have been incorrectly marked….and my day to day struggles and changes must be a figment of my imagination…… so many others our diagnosis is so often questioned because we don’t fit the norm.

But going back to the article. As you can imagine I was met by much defensiveness when my book came out and my words were read. I learnt how others had told a different version, denying, trying to convince people that it happened differently. I actually felt sorry for them having to do that.

What they didn’t seem to consider was, of course they would see the episode differently, they hadn’t just been told they had dementia. For the managers, occupational health and all the others, it was a day like any other but with the added interruption of an employee wanting to talk to them. I actually wrote the words, “how long have you got’, in my notebook that I took to all meetings. That’s how I know they were said. They were probably not meant as they appeared but they had a life changing affect on me. I actually wrote detailed notes of other meetings, that’s how I know what happened.

I don’t deny there was another version of the episode, of course there was; I’m not criticising how it was dealt with – it highlighted the ignorance around dementia. My life had been turned upside down at that point. Maybe I didn’t help anyone’s day with my confession, maybe I embarrassed, maybe they too had personal troubles. All these things contribute to how we react to distressing news.
When the police ask for witness versions of events they’re used to getting several versions as people see things differently. This is no different.

But it goes to show how words matter, no matter what the situation. Words can make or break someone’s day; can have a profound effect on their lives or make them feel better. Just like the words of verbal bullies, which often mean nothing to them, can profoundly affect someone’s life forever. so can any words spoken at any time, stay with someone, no matter what the intention, just like they did for me.

We’ve  all done it without thinking, said the wrong thing at the wrong time, but you don’t know what’s going on in that persons life at that moment…..

Next time you find yourself in a difficult situation or expressing an opinion, think carefully about the words you use………they could stay with them forever…….

Taken from my dear friend google….

Why does Change take so long?…

Following on from Wednesdays blog on my letter to those that hold the purse strings, todays is of a similar theme and my latest blog for Psychology Today.

It asks, does change seem irrelevant unless we ourselves are affected by the situation?

Finance is always the sticking point but I give my three changes that cost nothing as a good starting point……

A Day with the New Cast of Still Alice……

Yesterday saw my first trundle for ages down to London. The stage production of Still Alice is about to go on tour around the country. I was a Consultant on the premier at Leeds Playhouse and worked with the lead, Sharon Small. Sharon is still playing Alice but the other actors, all bar Micah, are new to the roles.

Nicky Taylor, from the West Yorkshire Playhouse (now Leeds Playhouse) wanted the cast to have some consistency of input so asked me to go with her again to meet the latest cast, talk to them about my encounter with dementia, take them all through a dementia friends session and explain the ethos behind working with people with dementia at the Playhouse. We also said we’d have a question and answer session but with no question out of bounds.

It was all a bit last minute due to funding problems (as always) but Leeds Playhouse stepped in at the final hour to make it all possible.

And so it was that I set off and trundled by taxi to the station. My lovely taxi company is based at the station and today I took them some fudge as a regular thank you for looking after me. The first train was on time so a good start to the day…..once I changed at Hull it became apparent that the Manchester line was blocked as was the York line 🙄 so our train was full of fraught passengers going to Doncaster to try and find an alternative route🙄 I’d momentarily forgotten all about the chaos of train travel….but soon reminded by the sardine can in which I was suddenly enclosed….. 🙈

It was a grey day but nice to be out and about again. Although it was going to be a very long day, as I’m wasn’t due to get back until gone 9pm😳 It’ll be my first journey arriving back in the dark which is a tad scary – something I never enjoy but Gemma was meeting me which was a bonus…..

Nicky was meeting me at Kings Cross so no maps, no instructions. I was just going to enjoy the day.

As the train trundled along the sun tried hard to make an appearance

Nicky was waiting for me when I arrived and we went and got a cuppa tea before making our way to the rehearsal rooms in Elephant and Castle……we saw a wonderful sign on an old building on the way. If only that was true…

We were met with a lovely warm welcome by the actors and it was so nice to meet them all. Sadly Sharon wasn’t there as she’s finishing making another programme until this Friday but all the others were equally wonderful. It was lovely to see David Grindly the Director and Michael Park, the Producer, both were in Leeds so nice to see familiar faces.

This is only the second day of rehearsals so everyone was still getting to know one another but there were lots of smiley faces. Someone made us a cuppa tea before we started off with everyone introducing themselves and then Nicky said a bit about herself and I said a bit about me before we took them through a Dementia Friends session…..

We did the broken sentences activity first and they sat in pairs discussing the sentences……only Micah had done it before…….but he happily sat through the session again.

After much laughter and discussion we went through the answers… many questions came out of each answer which was so refreshing. The session went on for much longer than normal simply due to the number of questions – wonderful….and time for a lovely piccie of all my new Dementia Friends….

Nicky then went through the ethos of Leeds Playhouse and her work there before a much needed cuppa tea for everyone. During the break I made two people cry🙈 by talking about my inner self who helps me work out things during the bad days….but we ended the conversation with a hug and laughter…
Eva Pope is playing ‘Herself’ and the conversation helped her understand her character better.

It was then my turn to tell them a bit about me and my thoughts on the importance I place on the roles they’re playing. I said:

I know Sharon can portray Alice beautifully and realistically but one person can’t bring the reality to life. The truth is when we get a diagnosis so do our family and friends – so everyone’s performance is equal in its importance to make it a true success … pressure.”

We then had a question and answer session where nothing was out of bounds. After all how will they understand fully if I don’t answer any question…..the questions kept coming and by the end their commitment to their roles was plain to see.

I hope I manage to see a performance of the new cast as I think they’ll bring something new to the play. It will also get to mean that I’ll see Sharon Small again. Sharon might have been absent in person but we caught a glimpse of her in the costume room

I arrived knowing few, I left having made new friends and before we knew it the time had come to leave. I was exhausted by the end and my head was banging from all the concentration but wouldn’t have missed it for the world. I had a wonderful time with wonderful people.

The show starts in Sheffield and then moves around to many places. If you’re near a venue I’d highly recommend it. More can be found here…

And the website for the tour

I don’t want anyone to feel guilty …

The last thing I want is to make people feel bad about saying they not having a good experience with dementia… can be rubbish, it often is rubbish, but my personality is such that I try to concentrate on the good bits.

Someone on Twitter placed this tweet saying:

I’m going to be quite blunt today, and I hope I don’t offend anyone. This has been our experience as a family. There’s not much living well with Alzheimer’s” Campbell talking about the Duke’s family experience…”

My response said:

Everyone’s experience is different – even those living as best they can like me have rubbish days, so if all are rubbish I’d grasp every second of good.
sending hugs and I’m sure you havn’t offended anyone….🤗x”

Every single persons experience of dementia is THEIR experience and the one I write about is mine.

I would feel very sad if people felt unable to tell their true story just because many of us are trying hard to remain positive. Everyone has a right to a voice. All I’m saying is there’s good even in a bad situation and it’s so important to try to learn not to dwell on the bad and instead embrace the good.

And as Howard said in his blog yesterday, if we’d received the appropriate post diagnostic support in the first place and been educated on how to best cope, people would have the tools to live as best they can and have a better quality of life.

Those in the later stages can often be given up on if they don’t respond, if they can’t communicate and just sit, fail to recognise those closest.  But I just sit in my own little world sometimes then something will spark my attention back to reality again.

Don’t forget….it’s exhausting living with dementia and sometimes just sitting quietly is all we want to do.

For those in the late stages this is more difficult, but I truly believe it’s about finding a connection. There was a video doing the rounds on social media demonstrating just that……a room full of people with dementia sitting in silence in their own world with no stimulation, no one connecting, looking abandoned. Maybe they were all content in their silent worlds but then, in came 2 puppies and the room came to life. The residents eyes lighting up and one stood up unsteadily and shuffled towards the puppy with sheer delight and animation.

Many of these people may have had their own dog in their earlier life. The unconditional love that a dog brings was remembered at that moment and those who had remained silent began talking to those puppies with the love once shown to their own.

Never give up on us…….

Courtesy of my dear friend Google….

One of my rare outings in August….

Yesterday I was speaking at the Induction Day for new starters at NHS Humber Teaching Foundation Trust. I speak each month but assumed August wouldn’t exist for some reason so it was a nice surprise when the usual email popped into my inbox.

I usually speak alongside Cathryn Hart, Assistant Director Research & Development at the Trust, and talk about why research is important in all their roles. But Cathryn wasn’t available this week so had the pleasure of talking with 2 of her staff, Saba and Lauren, both Research Team members.

Lauren had agreed to pick me up from home and arrived right on time. Lauren is the Research Assistant who usually visits me at home when I’m actually taking part in research so it was nice to have a catch up.

We arrived at the Trust Headquarters and went up to their office where a cuppa tea magically appeared❤️. I stopped all 3 working then by chatting away, mainly about cats (😻} and Billy’s recently holiday (blog to follow soon) until it was time for me, Lauren and Saba to go down to meet the newbies.

While we were waiting outside for the Chief Exec, Michelle Moran to finish her bit, one poor newbie arrived late……I told them not to worry and to sneak in with us and no one would notice 😂🤣

It’s only the second time Saba and Lauren have done the induction, so both were nervous, but everyone has to learn and one time has to be the first.

The room was full with a big intake of new staff. These are staff from any department, clinical and non clinical. I made sure I got the obligatory piccie of me and Lauren before we started, with Saba behind the camera.

They went through all the good work being carried out in Humber and why research is everyone’s business.

I ended the session with but weirdly it sounded strange to be speaking out loud to an audience again, even though it must only be a few weeks since I did just that. It felt new and strange. I remember faltering, losing my place.  Only I probably noticed anything was wrong, after all the audience was new so their expectation of me would have been low anyway.  It’s the one reason I dislike August; my routine gets disturbed. I forget the ‘how’.

But I finished off and said….

You may be sat there thinking, well what’s research got to do with me, it’s not part of my job.We have to normalise talking about research and to do this we must have every healthcare professional, no matter what their job, all coming on board and promoting research. To normalise talking about research would normalise involvement. If you don’t think research affects you, you may change your mind if you or someone close to you was given that devastating diagnosis of dementia.”

Lauren and Saba did a wonderful job and we’ll be the Three Amigos again in September😊

On the way out a newbie introduced herself to me as a new Clinical Psychologist and she was aware of the lack of post diagnostic support and would keep in touch…….well let’s see if words are turned into action……..

On the way out, I spotted one of my playmates Pam and her daughter Jo from Lancashire on some Alzheimer Society leaflets in reception………They travel well!

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😍