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….

‘Better Health in Residents in Care Home’ project…

Friday saw the last of a busy week of events with me trundling to Bradford Uni. I’m part of the reference panel for the above project. I suppose I’m being selfish really, hoping that consistent good care may be a given in the future and this project is trying to achieve that.

The weather has changed once more and winter is back🙄 and it was blowing a gale, very misty murky and throwing it down with rain.So no piccies …..🙈………but I knew once I, disguised as a drowned rat, appeared at the uni, that there would be a cuppa tea waiting for me. The fields were so flooded and waterlogged that even swans and geese had found new homes in the fields🙄

I arrived at the third train station to find Barbara looking at the platform information as well, so that saved me having to ask the man where to find the next train😊 We had a catch up on the train and arrived suitably drenched after ambling up the hill to the uni……We found Sandra already snug in the café and had another catch up before Sandra arrived, Geoffrey and Sue Tucker also  joined us upstairs along with the researchers.

No apologies as everyone was here! This was an update meeting. We’re there to offer advice along the way.

Katherine Froggart then led the meeting by reminding us of the study. The aim of the study is to decrease avoidable hospitalisation for residents.

The staff are given a ‘Stop and watch’ early warning tool with a view to picking out if there is a problem physically, If they think there’s something wrong, they go into a more detailed pathway…..if they think they need a GP they use the SBAR tool……..it provides a framework for staff to get help.

This is what the care homes are being asked to use now to test if it works.

They had a few issues with ethics which, after hearing the detail was quite a shock to us all, but they eventually did get it – huge learning curve for all of us. It just meant time was reduced for recruitment.
They recruited 14 care homes 8 in Yorkshire, 6 in London, and worked with care home staff to approach family members. Speaking to people worked far better than letters, which made sense.

Launch event at relatives meetings was mixed as relatives often have complaints they want to bring to the meetings so aren’t in the right frame of mind. But I think they told us the problems they had so we’d be surprised at the very good recruitment figures on the next slide, both staff, residents and family!

In each facility 2 champions were trained using the BHiRCH handbook….with all the tools and help they needed, wonderfully presented.

Learnt something new today from the session…….– don’t do pinch test the back of the hand, but on the forehead to see if someone is dehydrated. Weight is very important – You gain weight quickly when you may have acute heart failure – but a decrease in weight can be a sign of dehydration…….because you retain fluid if you have signs of acute heart failure and lose water if you’re dehydrated. My learning for today!
They’re going to share the video with us which includes how to do the forehead test correctly👍

The training sounded amazing as they had a wonderful facilitator. The champions will be given telephone support. Geoffrey asked if they were willing champions………they were all nurses and they imagined some were ‘arm twisted’ and some volunteered.

The next steps are data collection from care home records and from individual residents, staff and family members. They’ll be kept informed with a Newsletter and simply keeping everyone motivated.

We ended going off piste and talking about language…..and how language used in care homes, hospitals and other healthcare professional could be a research topic……..mmmmmm, now there’s a thought……

Working Together to Beat Dementia Event….

So after a busy overnight stay in Birmingham on Tuesday I was up at silly o’clock ready for a 05.30 taxi yesterday to get me to York.🤦‍♀️ My own fault for snucking the extra one in to see Agnes ………

Anyway, the lovely Oonagh, who had arranged everything and along with Dawn had looked after me brilliantly in Birmingham, sadly had to be up at silly o’clock as well to get me to the station😳 but she duly arrived at reception and chased the taxi when it failed to arrive on time😇

Trains then duly followed on time🙌 and it was a lovely sunrise out of Birmingham although so many waterlogged fields for the whole journey…

Some time ago, Barbara Carlton Woodhouse and Sandra Barker and myself, all members of the Alzheimers Society Research Network, had decided to hold our own event in York. We wanted to make it different – no death purely by powerpoint – different and so some time last year we put our thinking caps on and todays event was the end result.

We also wanted to celebrate the work by students at 2 of the Doctoral training centres, Bradford Uni (where I do stuff with students) and Newcastle. All 3 of us are involved with them in many ways. However, they had to prove to us that they were going to be innovative. I was part of a test run with the Bradford students some time ago and we had a run through of their’speed dating’ idea…………it worked well then so that was on the agenda…….👍

The other wonderful addition to the event was the inclusion of my playmates at Minds and Voices……After the welcome speeches I was due to talk with a few of them about why research is important to people with dementia and then after lunch the whole group were starting off the afternoon with half an hour of ‘People with dementia leading from the front’.

Anyway, people were due to arrive around 10 but Barbara was arriving early doors as was Sandra so me coming on the early train meant the kettle would be on😊

I arrived to find the tea in situe and after hugs and catch up with Barbara and Sandra we THEY finished getting everything ready.

Me, Barbara and Sandra – the 3 amigos……😊

Before we knew it, the trickle became an avalanche of people arriving. The wonderful thing for me was that my daughter Gemma also arrived.

Matt, Barbara and Sandra set the scene for the event and then followed me with 3 of my playmates from Minds and Voices – Eddy, Elaine and Eileen………..we had 15 minutes to talk about why research is important to people with dementia to start off the event.
Part of what I said was:
“Every researcher who comes into contact with someone with dementia can affect the way they feel about themselves – sometimes just for that moment in time – but what a responsibility to have”

I then introduced my 3 playmates in turn who wowed the audience and if we’d been allowed I’m sure I could have got them to talk all morning……

Professor Murna Downs was next up and spoke about transitions needing coping mechanisms. The Bradford students here would be talking about transitions in location of care – home to hospital, home to care home etc. The problem lies with inter professional communication. So finding the issues and solving them to make the path smoother is their aim.
“Professors have an expertise, but never underestimate a person with dementia as they have equal expertise.”
Paul, then gave us an overview of how the speed dating was going to work……….👏🎉

Speed dating about to commence!

The speed dating was wonderful. Yes, it was noisy and we could have been put in a quieter room but then we would have been away from all the excitement that followed – one person suggested it was unfair on people with dementia, but did they ask them?. I asked Minds and Voices what they thought and their faces lit up and they all to a voice said, ‘Wow! Wasn’t that wonderful.’ Says it all really…….they might not have taken it all in but it was fun and they DID learn stuff and they felt involved.

Thankfully it was then time for lunch as we all needed a break from all the excitement …..and I needed a cuppa tea😊

Many people came for a chat and asked me to sign my book which was so nice. It was particularly nice to hear from 2 supporters who had found it invaluable…….humbling.

After a cuppa tea lovely lunch it was time for Minds and Voices en masse. Everyone came up to start the afternoon session to discuss with Damian all about our course……a course for people with dementia, written by people with dementia, delivered by people with dementia………💪🏻

We had a roving mike and I think everyone spoke which I was thrilled to see. ……

It was then the turn of Newcastle doctoral students and they’re looking at Dementia with Lewy Bodies. They are look at imaging, gait, how to diagnose better so bio medical orientated research. They showed some videos……one about Brain donation and how it works. I’ve donated my brain so have a visit every year from them. I’ve told them I’m not quite ready to hand mine over yet………..he spoke of the ‘gift of donation’ which is a wonderful way to describe it.
The students then spoke in turn about their projects , from Visual Hallucinations, very common in dementia with Lewy Bodies….depression in people with Lewy bodies dementia, to Cognitive Flucuations…..
One shared a quote from the wife of Robin Williams who described her husband, who had Lewy Bodies:
“ I experienced him lucid with clear reasoning one moment and then 5 minutes later being blank and lost with confusion.”

Fascinating insight into clinical research and the students did their best to make it accessible to understand and it worked really well……

My brain started to go into shut down as it had been a very long 2 days…..so little typed after this but ……..

Time for tea and cake…….ahhhhh

Matt finished off by saying how the message from today was one of HOPE and working together is a theme that truly came out of today. Different pieces of the puzzle coming together as a whole piece.

Conference organisers really need to take note that one presentation after another is really not good enough. There has to be a mix of audience – academics, those putting the theory into practice and those receiving the theory and a mix of methods throughout the day. The speed dating allowed people to listen for 5 mins, then ask questions and offer advice.
In any conference room there is much knowledge, lay and professional and it’s wrong to think that it’s acceptable to listen to one presentation after another – allow participants to share theirs too.

The highlight of my day was hearing my playmates from Minds and Voices and the professionals alike, going home buzzing from their involvement during the day…..magic….and just how it should be

Me and my wonderful playmates. – with the addition of Matt Murray on the left and Jamie on the right…..

NHS staff Induction and Facetime with Virgin Money …..

Yes, a very bizarre combination of events today……….but a nice combination. Both are research related in their own way. The first promoting research to new Humber Trust employees and second, a bank looking at ways to help people with dementia.

So, yesterday morning Cathryn Hart, Assistant Director Research & Development, for Humber NHS Foundation Trust, picked me up at home. It was a very bizarre car journey to my house for Cathryn as for 4 miles she came through single track with snow higher than her car either side😳 and then a green world in my village as it had suddenly become milder here…..

We were going to Trust Headquarters to do our double act. We do this every month for new staff, no matter what their role is in the Trust and we always follow the Chief Exec

On the journey, me and Cathryn were trying to decide if we’d seen each other since Christmas🤔 which neither of us could work out – very reassuring 🤣. Obviously my blog would tell me, but I’d forgotten to look🙄 We contact each other by email lots so it often seems like we’ve met when we havn’t…….

Anyway, we arrived at the Trust and the all singing, all dancing Alison appeared with my cuppa tea👍…………

After my cuppa we made our way down to the waiting newbies……I think there was about 40 of them…..it’s always interesting to see whether they’re chatty or not. We have them early on and they often don’t know each other so are sizing everyone up, including us….if we’re lucky, there’s a person who isn’t afraid to speak out, but not today…..a very quiet group……

I always like this slide as it shows the 5th of the DAA ‘we’ statements produced by people with dementia. “We have the right to know about and decide if we want to take part in research”

We handed out the usual stuff of JDR leaflets and the Yorkshire Questionnaire but this time I’d also taken the postcards advertising my book (ever the opportunist). Bloomsbury have produced a postcard for my book and on the reverse it asks people to post on social media the one memory they would least like to lose along with the hashtag “SomebodyIUsedtoKnow

I’ve been given enough of these to take to every event I attend so you might have one forced on you!

We did our usual spiel and before we knew it we’d finished……..And Cathryn then took me back into Beverley to do my bit of shopping……

In the afternoon I had a Facetime thingy with Lynn Johnson, Senior Customer Experience Manager from Virgin Money😳. Lynn had contacted me quite a while asking if I’d have a phone conversation with her to learn more about mine and my daughters personal experiences since my diagnosis, particularly from a Banking/finance perspective.

I did something similar when I made the film with Lisa from the BIG Window company so sent her the link to that film as well.

http://www.the-big-window.com/thebigmovies.html

Lynn has gone through the Dementia Friends Awareness session and now wants to transfer that knowledge to the company. The time duly arrived and Lynn and her colleague appeared on screen.
They spent half an hour asking me all sorts of questions around the environment of the bank, online banking, attitudes of staff, processes, Power of Attorney and many more…….

Obviously my main message was:

”Get it right for people with dementia and you get it right for so many more”

It made a lovely change and Facetime is a good medium for me. They also asked if they could contact me again to do something with more people – let’s hope something materialises……

Double act with my daughter Gemma to the U3A…….

So yesterday I was on home turf with Gemma as we were doing a double act at the local U3A meeting. It had been planned for ages and I was to talk about the usual stuff and Gemma would talk about research in Humber NHS Foundation Trust, for whom I’m their Patient Research ambassador.

U3A, stands for University of the Third Age but has nothing to do with UNiversity……their vision is to:

“make lifelong learning, through the experience of U3A, a reality for all third agers.”

We didn’t get home from the theatre until after 11 the night before so I was so glad we weren’t due there until 1.30……….

At least it was dry today so the walk from the car park meant we didn’t arrive bedraggled as we were carrying Join Dementia Research leaflets and a banner etc………..🙄

We were met by one of the committee who immediately sorted us a cuppa tea😇 while everyone began to arrive. She told us not to expect many as it was half term and numbers were always down then…….however…….the room was just about full by the time everyone had settled and there must have been about 100 people👍

We were introduced as me and ‘Gemma, my daughter, who was just tagging along’ as we thought that might immediately bring a smile to their faces………..and it did……..
I started off with all my usual stuff first including adapting, moving , talking etc and hopefully threw in some humour every now and then.

Gemma then took over and talked about the research taking place in our local area and dispelled a few myths. I know I’m biassed, but she was brilliant……….

I finished off talking about the Advantages of having dementia 🙄 and about my book. They were generous in their applause and we had a queue of people coming up to both of us afterwards. Many people took JDR leaflets and they even offered to put them out again at the next meeting. They said some really kind things and it became apparent that many of them had twigged I’d been on TV and radio recently but just hadn’t realised it was me coming to talk – phew! – they might have been fed up of hearing me and not turned up if they had😳

The people afterwards came with many questions and stories, mainly of friends being in denial, which was sad, but also of queries re adapting and coping. The main consistent thing that came out was that people often talk to others, to friends, to strangers but rarely to each other…..seems like we need to normalise Talking –  hopefully they found my talk useful.

Afterwards Gemma had to take me to the station as I was heading for London as, on Friday, we were due to be live on the BBCs Victoria Derbyshire, but instead, due to another story they’ve been following, we’re going to record our programme to be showed at a later date. Normality quickly resumed as my first train was ‘delayed’ and then ‘cancelled’…….🙄🤦‍♀️🤐…..

A Day meeting students at Bradford Uni…..

Yesterday I’d reserved on my calendar for some normality after all the chaos of the last couple of weeks.

I was there as an Alzheimers Society Research Network Volunteer to hear the progress of the Doctoral Students at Bradford University, along with Sandra and Viv. I would also be meeting Barbara Woodward-Carlton for the first time since she gained her MBE. Barbara and Sandra (with me chipping in every now and then) are running an event in York in March around the students and others and many people with dementia, including my playmates from Minds and Voices – very exciting!

However, back to yesterday. It was a silly o’clock start as the 3 of us needed to meet prior to the main event to talk about the Agenda for York and basically have a hug and a catch up.
It was very cold and I woke up to a white world in the village, so it was definitely ear muff weather – wish it had been light as it would have been a very nice photo, but you’ll have to take my word for that🙄

When I got to Hull I just had time to get a cuppa to warm my hands🙄 – any excuse…….
The train from Hull behaved and was on time. The snow was very patchy and was non existent in Brough, just down the track😳 However it reappeared in Bradford and even though it was sunny, it was bitterly cold as I perfected my impersonation of Bambi walking up the hill towards the uni.

I settled myself in the Atrium to wait for the others….

I love the photo of all the female profs – it’s called ‘This Prof CAN’

Soon I was joined by Barbara, who was also frozen……and then Sandra who was equally frozen.

We went across to the Bright building to find everyone ready and waiting and had lots more hugs and catch ups. Clare Mason shown me the way to the tea corner👍 they even had a sign with “yorkshire tea’ written on it🤣

Me with my partners in crime, Sandra and Barbara

We went around and introduced ourselves as it’s a while since we last met.

The Students, Ahklak, Suzanne, Denise, and Angela, Lecturers/supervisors and us were all there. Clare Mason was also there to talk about further PPI Involvement.
Barbara chaired and tried to overlook the item on her agenda which says, ‘Celebration’ but we weren’t going to allow her to miss her moment of shining superstar and Murna gave her some gorgeous flowers.

Then onto the main meeting.

They want their students to come out understanding the importance and how non negotiable it is to include people affected by dementia in all that they do 👍🏆

I said I’d turned down the offer to go in the hat to go down to Number 10  as Bradford Uni and normality was what I needed today…….The lovely Joy Watson is going to represent the 3 Nations Group and I’m sure will do a wonderful job.

We spoke about writing an article re the evolvement and continual evolvement of the partnership which makes this so special. Our roles spill over into other capacities. Murna spoke about other opportunities – jointly presenting at conferences, etc…….

We briefly hit on ethics…..and I piped up that it should be an offer of choice and discussion and making people aware of the consequences of going public and sharing their story. People shouldn’t automatically be thought of as needing ‘protecting’,,,,

Should research stray into activism? The blurring of professional boundaries was a really interesting discussion. The richness of our group is such that it could show the general public that research isn’t purely academia – I said the public so often don’t see the connection between practice and research. If there was more awareness and partnership, research would then be seen differently by the public.

After lunch we had Speed dating with the students🤣😂🤣😂🤣

So they had 10 minutes on a 1 to 1 with each of the monitors

AKhlak was with me first – he is looking at How South Asians families cope with the changing needs in care and how they manage these complexities.. Dementia doesn’t descriminate so why do services? Fab research.

Lovely photo taken by Prof Murna😊

Angela – a nurse by background is focusing on the role of the nurse in hospital and care Home setting in optimising the transition from hospital back to nursing home. There’s an assumption that people going back to care home are adequately looked after, which isn’t always the case.

Suzanne – is looking at the quality of the medication systems and processes during transition between care home and hospital and in reverse.
Safety, effectiveness and timeliness, efficiency and person centredness and equitability.

Denise – finished off. Couples who live together at home – one with dementia and co-morbidities. How they go about daily activities, how daily life evolved and what do they feel about it. Denise gave them a camera and asked them to take a picture of their daily life for a month. Some people have never taken pictures so found it difficult. Some people only wanted to take pictures of the good days, which was interesting. Images are so powerful and enable people to bring conversation into relationships.

Oh wow! The 10 minutes, went so quick as the conversations were so wonderful. They’re all so enthusiastic. 10 minutes was so little time but it enabled them to focus and it left me wanting to know more. Condensing their ideas in 10 minutes is a great skill to learn.

We then finished of with our research networks volunteers meeting with Prof Murna and Prof Jan.

We discussed the value of having lay people involved. It not only allows researchers to moderate their language and use everyday language but it also brings different valuable perspectives to the table.

Many Universities struggle to see the advantage of full involvement with the public but the richness it brings to Bradford is invaluable – if only we could bottle it…….