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🙈

Double dose of researcher visits…….

After a manic week of travelling last week, this week, I had two visits by researchers to my home. One on Wednesday, the other Thursday.

So to Wednesday visitor…..my favourite species of the human variety – apart from my daughters obviously! – from a PhD student…….Ruby Allen from Loughborough University. An awful long way to travel but she is having problems finding participants in her area…..so anyone reading this in that part of the country get in touch and I’ll introduce you. If we don’t take part in research, how can we make things right and identify where things are wrong?

Ruby is conducting research into Web accessibility for people with dementia. She contacted me a while ago to see if I would be one of her participants and I couldn’t refuse since the web is my lifeline…….

Ruby arrived on time, but I must say, I got a little worried……..as she didn’t want a cuppa…….she had water with her😱 but she had a nice smiley face so all was forgiven……

We signed all the usual forms and she went through the detail of the project again.

She’d started her studies by looking at Technology use for people with dementia and then narrowed it down to look at web design as people said this was a problem. Web designers acknowledge they don’t acknowledge people with cognitive issues, which was an interesting omission as I can’t imagine why…..

She was here to know – What I use internet for and for dementia diagnosis and symptoms which may impact on my ability.

Ruby told me about her ethics application…….it makes me so sad that so many ethics committees have so low regard for our capabilities……..and maybe web designers think we don’t use the web……🙄

She asked some very good questions throughout, particularly on navigating and perception. When I click a button a web site I forget where I was previously, instantly – so prominent Home button is key for me so I don’t get lost.

We spoke about the importance of colour and contrast on web sites. I told her how to tell if something is a good contrast – I used this when deciding on colours in my house.
The contrast has to be good for people with dementia, so if you take a black and white photo of whatever it is, you can see if the contrast is good. If it’s not right it will all be roughly the same shade. You’ll be surprised what colours shouldn’t be put together, even though in colour they seem to work……. but you can only tell if you take a black and white photo.

Ruby then asked about problems experienced on the internet – I said about password changes being a problem when I forget mine – they often won’t allow you to use the same one – I’m lost since I got a new iPad as many of the passwords disengaged so I’m having to reset and it’s becoming a nightmare……🙈

It was a fascinating chat and a good subject to research.

So to Thursdays visitor…..Clare Mason from Bradford Uni…….although today I wasn’t a participant as I’m on the advisory group for the research project, ‘Journeying through Dementia’.

Claire was coming to help me sort out my Skype skills, which are non existent …….We were having a Skype meeting instead of all trundling off to Sheffield…..

She arrived on a cloudy unsunny day🙄 but arrived at the promised time. Sarah helped me with Skype a while back and it’s all loaded and I’ve used it…….just can’t remember what to do with it now or where I start😶 because if I’m not using it everyday……I havn’t a scooby doo……

I logged into Skype before Clare arrived, only to find I’d forgotten my password😱 I then had to go through the process of resetting, only to find I couldn’t use a previous password🙄 so was getting in a right muddle but did it eventually….

Anyway, Clare arrived and before long those in Sheffield Skyped me and after much fiddling, and with Clare’s help. I found out how to answer it.

As a member of the steering group for Journeying through Dementia, we were given updates on every aspect and asked for input as and when required.

I couldn’t Skype and be on my iPad at the same time so havn’t a clue what we said. All I remember is the wonderful Zoe or Jessica had sent me all the paperwork in the order I would need them, which was a massive help as there were loads.

So nothing else to write I’m afraid AND I forgot to take a piccie of me and Clare🙄 so can’t include her here…….

A Trundle to Salford…….

After a bad few down days with dementia. On Wednesday I found myself on an afternoon trundle ready to speak at an event on Thursday morning in Salford. Sometimes it’s the ‘doing’ that pulls you out of the fog……

Researcher, Tracey Williamson, asked me back in February if I’d like to attend the end of study conference. The research had been going on for the last 3 years and they had been researching people with young onset dementia and their families/family carer’s experiences of health and social care services which are sometimes aimed at people in later life.

They’d already been to my house and recorded my talk, just in case I was having a bad day, so I felt like I knew them. They’d recorded me reading my talk, answering their questions and reading an extract from my book.

The conference was due to start earlier than I could comfortably get to Salford, so they’d kindly agreed to put me up in a hotel the night before…..hence the trundling starting on Wednesday afternoon!

Anyway, it was a gloriously sunny afternoon and I was able to catch the village bus and pop into Sarah’s for a cuppa before going for my train.

Tracey has agreed to meet me at Manchester station and take me to my hotel and amazingly my train left on time! It was sad to see the blackened sight of Saddleworth Moor as we sped past but even more clear was the acrid smoke that filled the train as the doors opened and stuck to the back of your throat……what it must be like for the firefighters in the thick of it, goodness knows…

Tracey was there as promised and we got a taxi to the hotel on Salford Quays – I had a lovely view of the water from my window

An even bigger surprise was the news that Joy Watson, who also lives with dementia and from Salford, was joining us for supper – Joy only came out of hospital a few days ago but was adamant she was going to join us and no sooner had I arrived, we were having supper and time for a selfie…….I rarely go out in the evening but couldn’t resist seeing Joy.

Chris Seward picked me up from the hotel in the morning and drove me the short way to the venue at Salford Uni where I was met by Tracey, John and a cuppa tea. I was soon joined by lots of new playmates with Young Onset from the Salford area, including Joy!!

Tracey started off the day with the normal housekeeping and then it was me to open up the day……..I said:

“I’m not saying that it’s plain sailing because it quite clearly isn’t but if you look at a diagnosis as a new way of living, a life of adapting, it can make life much calmer and a little less stressful.”

And I finished off by reading an extract from my book about my glider flight.

There were many lovely questions, one of which was:

“if you had to choose one type of support from the moment of diagnosis what would it be?’

My immediate response was peer support – the opportunity to talk to people going through what I was.

People were very kind in their support.

Tracey then spoke of the study itself and gave a history of it from the beginning. They had an Advisory Group from the start, some of whom were my new playmates in the room.

“Research is messy” it never goes to plan, said Tracey. It’s always about adapting and being creative. Just like living with dementia really!

It was then the turn of Luisa Rabanal to talk about the experiences they found in the study from people with Young Onset.

The participants were solely from the Salford area.

The findings were 4 main themes – the process of diagnosis, the impact of living with YOD, the needs and living well. Luisa gave quotes from the participants for each theme.

People got a lot of leaflets, a lot of information but it was face to face they needed at this time.
Most of the participants felt peer support was the key to help them feel safe with dementia. To see others who are further down the line and still ‘doing’ was inspiring for those at the beginning. One great quote from someone was:

“If I keep moving the dementia can’t catch me”

Not everyone has a positive attitude so we need to find ways to help them through practical coping strategies….

She showed a great summary slide

Luisa then moved onto family carers – as the research included them as well. I always say that our needs are equally important but our needs often run in parallel and never meet.

There are close to 700,000 people in the UK acting as primary carers and save £11 billion in care.

unsurprisingly, carers also said how leaflets were pointless and face to face support was also needed for them too. They have the same needs but for different reasons and again, a supporter of someone with Young Onset has different needs to those diagnosed later. Another great summary slide…

Now time for a cuppa tea👍

Followed by the turn of my new playmates to be on stage talking about their part in the Advisory Group from the beginning.

It was then time for lunch and for me to get to know some of my new playmates better, including comparing bruises where we wobble, lack of sleep and lots of laughter!

After lunch it was the turn of John Chatwin to talk about the experience of service staff and the final interviews.
They interviewed 25 staff in a range of services…..think I got lost in my little world at this point, as me thinks brain shut down must have started as I seem to have stopped typing….I’m sure it wasn’t anything to do with John!

I’m sure there was lots more but……🙄

Salford appears to be a good area for services, although they need to be more focussed when addressing the needs of those with Young Onset.

I was well looked after and everything taken care of in a timely manner with no uneccesary stress – thank you Tracey – and I shared a taxi back to the station with Luisa, which was lovely.

On the journey home it was sad to see the helicopters above Saddleworth Moor still trying to put out the fire……….and our train was delayed……..a train decided to break down in front of us…..🙈😴🤯
I might have got home with a banging headache in tow and later than I should….but dementia hadn’t won today……..

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…😉

A Diagnosis is the Beginning of a Different Life…….

That was the title of the talk I gave on Wednesday at the Annual Humber NHS Foundation Trust Research Conference. The Conference was:
‘Developing a City of Research”

Always a nice change to do something local and I love working with my local research team, led by Cathryn Hart. Cathryn had asked me sometime last year I think!

After Tuesdays sunny weather, Wednesday was cool and cloudy. Alistair Burns was due to talk after me and the day before there had been last minute requests from the local TV company. Having me and Alistair in the same room was an ideal opportunity to talk about next weeks Dementia ACTION Week.

Anyway, Gemma was driving me there today and arrived as planned and we drove to a nearby venue……no taxi, no bus, no train required……..ahhhhhhhh

We arrived to be met by the lovely research assistants on the registration desk The amazing Alison – administrator extraordinaire……… immediately apologised as the hotel venue did NOT serve Yorkshire tea😱. In fact several people came up and apologised🤣 – obviously no brownie point for the hotel but one for all the apologies…….🤣😂🤣

Everyone started to arrive and the hall began filling up…….it was a sell out so the room was very full.

Lovely to see the cover is a painting done by someone on the Journeying Through Dementia Study

Chief Exec Michele Moran opened the conference…..she gave important detail, like the hashtag for twitter:) and the fact that it’s the NHS’s 70th birthday in July. She spoke of the raffle that’s going on throughout the day to win my book! And all proceeds are going to the Humber’s charity, Health Stars……

I started off the conference and had 25 minutes where I said amongst other things…….

“The day before I was diagnosed, I was working full time in the NHS, the day after being diagnosed I was working full time in the NHS.
Nothing changes overnight, so why are we made to feel by so many that it’s the end?”

I finished by reading a couple of extracts from my book

After me was Alistair Burns on the “Challenges and Opportunites of dementia…..”

He spoke of dementia being the most feared illness in people over 50 and how dementia rarely travels alone with people having another long term condition; When you’ve met one person with dementia, you’ve met one person with dementia and it affects people in different ways……..

It was sad that everything Alistair said was very familiar so I must have heard him say it before………shame there was nothing new and no ACTIONs just words…… he spoke of ‘supporting Clinical Commissioning Groups’ but it always appears that CCGs are under no obligation to follow best practice……he showed a slide on Post Diagnostic Support available from NHS England……..

Guidance on what support should be available’……….just words……

……..simply words……no ACTIONS spoken of at ground level…….

At the Q&A bit, I said how next week was known as ‘Dementia Awareness week’ and is now ‘Dementia ACTION week’ as we’ve heard so many words and had so many promises, but next week is the time to turn words into ACTIONS……….no response from Alistair……

Before a tea break it was the turn of Professor Joanne Reeve from Hull York Medical School on the ‘Quiet Revolution – Reimaging Primary Care……’ moving away from the medical model and working towards Continuous, Comprehensive, Coordinated Accessible Care………Recognising health as a resource for daily living…………Person centred care in primary care is in decline but at the new academy of Primary Care – they are focusing on person centred prescribing,

A wonderfully refreshing talk – huge brownie point for Prof Joanne……….implementing new ways of working..changing practice through research in practice. What’s happening on the ground doesn’t often reflect guidelines…….developing and amending implementation as it’s being done on the ground requires a shift from evidence based practise to implementing evidence as it’s happening. She gave a wonderful quote around this but I wasn’t quick enough to type it down….🙄

Such a great talk….

Time for a cuppa……but before I could get one I was whisked away to do a quick interview with the local ITV Calendar, but someone made sure a cuppa followed……..🤯…..In the interview I spoke about next week being Dementia ACTION week and about our course in York not taking any clinicians off the floor …….designed by and delivered by the people who can help newly diagnosed the most – people with dementia……..how we need something similar in the East Riding…..

We spoke for a while so it’ll be interesting to see which snippet they use……

I was taken back to the room with a second cuppa…….

I felt a tad discombobulated from all the too-ing and fro-ing so seemed to switch off as I havn’t typed anything. Usually this happens around 2pm but it was only 11am😳– maybe I was just drinking my tea during the next speakers before I left or maybe I just wanted to sit………

Cathryn ended the morning session by showing a celebration film of all that the research team had achieved in the last year…….I did have to listen with my fingers in my ears though as it was very loud but it was wonderful to watch and nice to see some familiar faces, including my own! But more so, to see Colin and his wife talking – Colin is a dear friend who I havn’t seen for ages so it was lovely to see him speaking……

Before I left, I got a lovely bouquet of flowers and pressie from Cathryn Hart……..

Always good to see local teams celebrating local achievements……

Filming for Salford University……

My blogs are a tad out of sync this week…….🙄

I was on home turf Monday. I was being filmed at home by researchers from Salford University Who are coming to the end of a 3 year study on Young Onset Dementia…….

I was contacted ages ago by Tracey Williamson to ask if I would speak at their end of study conference in June. They also asked if they could come and film my talk along with a 60 second spiel, at my home and Monday was the day sorted for this bit.

It had been a 3 year study ending this summer on the experience of those with Young Onset dementia experiences of health and social care services, which are sometimes aimed at people in later life.

They want the film to be positive and so my spiel was entitled:
“You CAN live with Young Onset”

It was a lovely sunny day on Monday outside by back window. Just the right weather for a visit to the village.

Tracey was coming along with researcher John Chatwin…….and had kindly sent me a photo of them both….They duly arrived at the planned time and, first things first, I asked if they wanted a cuppa……..I knew I was in safe hands when they both said yes……😊

John set up all the paraphernalia in the conservatory while me and Tracey chatted.

Once all set up, we first recorded the ‘60 second read’ about my views, including one question on how what my book may teach people…my answer to this being:

“By the very nature of my diagnosis, my book is about the loss of the old BUT MORE IMPORTANTLY, the birth of the new me. But what I hope it shows more is how relationships change in a crisis, how new friends are made and how adapting to this new world is the key to surviving.’

Before we moved onto the next bit, I took a photo of them filming and taking a photo of me for twitter🤣

And then recording the talk I’ll be giving at the end of study Conference on 28th June in Salford on Young Onset Dementia…….including:

“I’m not saying that it’s plain sailing because it quite clearly isn’t but if you look at a diagnosis as a new way of living, a life of adapting, it can make life much calmer and a little less stressful.”

I ended by reading an extract from my book about the glider flight – just to end on a high🤣😂🤣

Before I knew it we were finished but not before we just had time to take a selfie….although I’m not very good at them…..

Really looking forward to their end of study celebration conference in Salford on June 28th on Young Onset Dementia😊

May madness continues……..

May has always been the busiest month since being diagnosed. It contains Dementia Action week so has always been crammed……….

After the excitement of recording in London, last Friday saw me heading towards Bradford University for a double whammy of meetings and the last of a busy week before a much needed 3 day break due to May Bank Holiday yesterday.

I’d had a few problems settling in at home after 4 days in London. I knew it would be difficult to be away for 4 days but the turn it took surprised me………my routine had been broken, a new one learnt and then I had to undo that one and relearn home again. I had done a Wendy Sunday list and a Wendy Thursday list to help me get back in the routine again, but I hadn’t realised that I’d forget what I did and how…….very weird………

The strangest one was when I climbed into bed with my clothes on……I knew this wasn’t right so got out and sat on the bed and looked round, but, of course, things weren’t in their usual place, my routine was all out of sync……..I sat on my bed and watched the birds for a while in the paddock and then looked around my room again……I eventually got my pyjamas out of the draw but it took so much thinking – they’re usually on the chair waiting…….other things happened that I’ve forgotten now.
Just goes to show how important routine is in our lives, especially when you’re on your own.

Anyway, I digress totally 🙄………The first meeting was for me to take part in a new study – the NIDUS study – anacronyms often mean nothing to me and I can’t imagine what this one stands for but I assume I’ll find out when I meet Jules, one of the Research Assistants ………It’s exploring how people with dementia are supported to live independently at home..

The second was me as a Research Network Volunteer for the Alzheimers Society on the Caregiving HOPE project with Dr Sahdia Parveen. Sahdia has been funded for this project the the Society and we are there to monitor the proceedings. This will mean I’m meeting up with fellow monitor playmates Sandra and Uthay……..

The morning dawned, the taxi arrived and the first AND second trains were on time. The Humber looked a joy with the sun desperately trying to shine …..

The final train to Bradford was also on time and I had the carriage all to myself…….ahhhhh.

I arrived for the first meeting with Jules after a nice walk up the hill to find Sahdia in reception – her sister now works on reception so it was lovely to meet them there before Jules came down to take me upstairs.

Jules assured me they’d tracked down Yorkshire tea for the the meeting, so obviously earned her brownie point……..🤣

The first question I asked…….what on earth does NIDUS stand for……..?

The answer……..New Interventions for Interventions in Dementia Study……..mmmmm, don’t think I wrote that correctly….🤔
They want to devise a guide for family carers and people living at home with dementia to help remain independent and provide training for professionals who work with people at home with dementia – what’s helpful and what’s not.

They’re right at the beginning and the first stream of work is looking at other research including what home carers do from their perspective. Observing community home carers is a new venture during the study.

We went through all the initial scene setting for the interview before starting the recording, signing forms etc……they don’t have a twitter feed yet…..a missed opportunity for me to promote!

We went through loads of questions about living independently and what should be learnt…..by people with dementia, supporters and community home carers.

I didn’t type so don’t know what we talked about. But I do remember saying how their booklet should contain a fine balance of reality but positive – not concentrating on the ‘can’t’, won’t ‘don’t…..and instead on ‘do’ ‘can’ and ‘will’, the language they use being very important.
I also mentioned that the very first question made me feel anxious as it was very open and not a good starter…….but I know they’ll be up for constructive criticism and I hope that gets changed.

So then onto Sahdia’s project………how willing and prepared are the public to look after a loved one with dementia.

Htay, Ripaljeet, Alex, Sahdia, Sandra, me and I forget the name of the girl on the right (sorry!)

Sahdia gave us an update….they’re in the wrapping up and writing up stage and are due to finish October – where did that 2 years go!

An output for carers on this study will be to produce a book of tips. We were here today to go through the huge list of quotes and select the ones for the book…..there will also be photos the participants themselves took to represent what dementia means to them – very touching.

I suggested it would be good to have a balance of positives and negatives as you wouldn’t want someone to feel bad who wasn’t coping by giving all positive quotes. Instead having a combination of both, then they can see how other people find it difficult but sometimes there are ways to adapt and cope.

We had to consider the look of the book and the cost……. Sahdia is applying for funding for dissemination to be able to produce the book and deliver a conference to promote…… dissemination is key for any research – for me research is pointless is dissemination grants aren’t given………

The fact that we are part of the project as well as Alzheimers Society Researchers, we feel we hear far more of the real environment and not what a researchers wants the monitors to hear.

Sahdia with the 3 Alzheimers Society Research Network monitors – me, Htay, and Sandra

The biggest impact on me came from the End of Life care – lots of carers are prepared for the death but few for the time that comes after. Many have services and people coming in and out all the time when the person is alive and then suddenly, as well as losing their loved one, they lose all the support network – an emptiness when they most need someone……..

I think my week had been too long for me to stay focused for the whole time today as words have stopped on the page………..

But a wonderful research study, and Sahdia is the most organised researcher I’ve met and has far exceeded all expectation in terms of number of participants and the quality of the data…..huge pat on the back.

Time for home……and rest…….but time for one last photo…….whenever I go to Bradford I always wonder how on earth they got this car on the roof of this house…….😳

Analysing my walking………

It’s not everyday you appear as bones on screen but this was the opportunity Dr Alastair Jordan (Senior Lecturer in Sport and Exercise Science School of Sport York St. John University York) gave me yesterday…..

He is doing a study on the Biomechanics of walking. He’s previously come to see me and my playmates at Minds and Voices, so I already knew of the project but then I suddenly saw him advertising it on Twitter so offered to join in the first part where they record your movement.
He also asked me to comment on his information sheet which scored him an extra brownie point.

Anyway, we’d arranged to meet yesterday at York St Johns University yesterday.

After the wash out of the Easter weekend, yesterday started off lovely and positively warm…….😳🤓

The Westwood will soon have the town cows out for the summer after their indoor shelter over winter , but today it still lay waiting for their return.

The bus was on time and I took my usual seat upstairs but as we started off everyone started to moan about the heat……..🙄……the bus driver had automatically put the heating on and was totally unaware of the moans upstairs…..very funny🤣 and kept me entertained for ages…….

Alastair is a Sports and Exercise Scientists, and only started working on research into dementia in September and not only wants to find the differences between people with dementia and those without of a similar age but aims to find out how exercise might aid our walking ability…………… There’s been research on the way people with dementia walk but many havn’t looked at the deep analysis around walking.

His mum was a control person and caused chaos for him -ha! A Mother’s Day treat……….😂🤣😂🤣 but he did take her for a meal afterwards……

York Museum Gardens was looking positively spring like with all its daffs..

Alastair had sent me a map, which was perfect and I got there with no problem at all….I asked someone if I was in the right place and she seemed to know who I was so took me round to the lab room…….

Alistair started off with all the usual paperwork associated with research and then proceeded to wire me up to take initial readings before removing some of the white funny bits………but first I had to put on shoes that everyone would wear so there’s some consistency. However, these were lace ups….I havn’t worn lace ups for eons so he had to sort me out with them………I got him to take a photo for you all to have a laugh at..

I then stood on a metal plate on the walkway which enabled the computer system to measure the length of my bones and distance between certain points. He then removed some of the sensor thingys to allow me to be able to move more freely.

First I walked wobbled up and down without a stick, which did give Alastair a fright at certain points as I wobbled up and down……the cameras recording at all times and then, just for fun, I walked up and down a few times with my stick……obviously totally different but no research needed to show I’m better with my stick…

The metal plate on the floor I spoke of records the amount of ground reaction force from e.g. the pelvis and  joint positions. (well I hope I got that bit right! It measures the position and force from joints on landing floor……I think!) It was all very fascinating and very different.

Those with Vascular dementia have different shoes to wear with curved soles as they are prone to getting cramp in their legs every few meters due to poor circulation in the legs – Alastair said they are often referred to as ‘window shoppers’ as they frequently have the need to stop when out shopping……mmmm, nothing wrong with a bit of window shopping… that’s my learning for today as I’d never heard of that😇

Alistair is concentrating on this part of the analysis, which will hopefully then lead onto showing how exercise may help in the next stage of his study. His research is being done on his lonesome at the mo and he’d really like some research playmates. I told him that dementia researchers collaborate lots so hopefully another uni will be interested in working with him….

It was over before I knew it and took just over an hour I think, but ….oh, what fun it was doing something totally different….and here’s a computer image of my lower half…….

Alastair was going to send me a few clips of me walking wobbling to put on my blog, but I didn’t want everyone having too much fun and laughter at my expense……..☺🤣😂🤣😂

Remember the warm spring sunshine I mentioned at the beginning?…… needless to say that soon disappeared and it was torrential rain all the way back……🤦‍♀️

Alastair is still looking for participants and if anyone is interested in taking part in this wonderful research, please email him on

a.jordan1@yorksj.ac.uk

And here’s a piccie to show how lovely he is………

Living with Dementia and Hope from Research Course…

Yesterday I helped deliver a session locally, as part of the Hull Recovery College, on Living with Dementia and Hope from Research. I was doing a double act with Cathryn Hart, head of the local research team. We’d done our first one months ago and today was our spring session.

Cathryn picked me up from home. After yesterdays cold weather, today was positively balmy! We were actually hot after the drive and the walk to the venue

We arrived to find someone had put the water boiler on and cups lay in situe…….Cathryn had also brought Yorkshire tea bags for me and some inferior sort for everyone else 🤣😂🤣😂🤣

Two people had arrived before us, even though we were early, and I wondered who they were as they said ‘hello Wendy’😳…….turns out the nurse had read my book🙏

We sat chatting over a cuppa and soon the rest of the nurses arrived.

When we’d decided to run this free course we hadn’t know who would attend….we’d hope people with dementia and supporters may come but no such luck for me, but wonderful that nurses have attended. We thought after today, that maybe the Recovery College is the wrong place to advertise…but you never know until you try..

Anyway there were 7 community nurses (I think) and 1 student nurse (who I immediately identified as my favourite person 😊 )– don’t think we could have got anymore in the allotted room so, small but perfectly formed and such a smiley, talkative and lovely bunch.

Because we never know who might attend, me and Cathryn tend to have a vague plan of what we’ll do but then ‘wing it’ according to the audience. It’s worked well before and worked really well today.

I spoke to them about the diagnosis process, the transfer from one county to the other issues, moving house and many other things. Cathryn read out letters from research participants to show them the impact research has on people. We explained the process of ‘referring’ people to the research team……..and that’s when the penny dropped for all of us……😱

It soon became apparent that researchers shouldn’t use the word ‘referral’ to NHS staff as this makes them think of risk to themselves and being responsible if something goes wrong……it was a light bulb moment for all of them.
They aren’t ‘referring’ people in their sense of the word, they’re simply signposting and giving information. THis made them all feel a lot better as if someone complained, they wouldn’t be responsible.

Another case of ‘language’ misleading people………

They asked soooo many questions…….we laughed loads, learnt loads and exchanged ideas……the perfect outcome for any course

My learning of today at this session was to find out some amazing news…..

I learnt that now I’m ‘Organic’ – instead of a ‘functional’ patient – (organic refers to people with dementia and ‘functional’ includes people with anxiety and depression) – I’d never heard of these terms before….

How amazing that I’m Organic – does that mean I can charge more!!! 😂🤣🤣

We actually overran as people were so animated. We could have gone on for so much longer. It was such a success and they suggested  further ideas for me and Cathryn to meet more of their teams…….perfect👍

Obviously I had to have a group photo at the end…..I did give them the option of leaving the room but they were all happy to smile for the camera….