Dementia and Cancer….

Yesterday found me heading for Leeds Beckett University. I offered to be a monitor for this interesting study on living with dementia and having a diagnosis of cancer. The Alzheimer’s society funded research always have a team of 3 research monitors where possible on each project. Our aim is to encourage, offer advice and sometimes simply listen and share in their successes and challenges faced.

My 2 partners in monitoring for this project are Annabella and Anne

I was very lucky as the student undertaking the project lives close by and so was able to trundle me in her car instead of navigating the trains…..

And so it was that Rebecca picked me up at the agreed time. We had a lovely drive to Leeds and I was able to get to know Rebecca. She’s only just started her PhD and it’s wonderful to be involved with her at the start of her study. Today was her third day!

Her study is looking at the care and support needs of those in residential care homes who have both dementia and cancer.

We arrived at Leeds Beckett and had a cuppa before heading to the room. I was very impressed with Leeds Beckett as Yorkshire Tea is everywhere, even in the student cafe – so I’m glad to see education has got it right in Leeds…..👍⭐️🤓

We were met by my lovely Twitter friend Professor Claire Surr, Dr Rachael Kelley, both supervisors for Rebecca…..and Professor Alan White who has a special interest in Cancer. Can’t believe I forgot to take a group photo🙈

Anne and Annabella soon joined the party and we started off with cuppa teas and cake….

The aims of the project were detailed nicely in a slide

Rebecca’s background is marketing and public relations but has changed tack due to family connection with dementia and brings lots of different skills with her.

The project sits within the Themes of Leeds Becket and come under the theme of Dementia Care and services. It fits in so well with the other studies in hospital and Nursing home settings.

The combination of dementia and cancer throws up so many issues such as pain identification, symptoms being due to cancer or dementia and simply remembering you have cancer and many many more, making caring for someone a complex process.

Rebecca took us through her plans for her 3 years. She was very well organised which is a good start for any PhD!

Year 1 is a setting the scene year

I loved the simple way Rebecca laid out her slides with wonderful piccies to accompany.
I didn’t know what ethnography meant and found out it’s ‘observing’ and knowing what and how to observe but also knowing when to stop.

There’s a limit to the amount of time you have to spend on observing the experience of the person so there’s a limit to how many care homes you can visit so the limit has been set at 3- 6.

PhD students have the advantage of coming from the angle of learning and gaining access to e.g. Care homes, is often made easier because of this and they’re often welcome as long as they see a benefit and value in what’s being researched.

Year 2 – once ethics has gone through, was all about recruitment and had the cutest slide

They’ll also be a lot of interesting gender information that comes out of this. Professor Alan has an interest in gender and told us some wonderful facts which I wasn’t quick enough to type…..

The essence of Ethnography is listening to stories and observing , not interviewing.
Thinking of the location for talking and observing especially when interviewing supporters is important.

We then moved onto the role that we will play as Research Network Volunteers

We went through our expectations and Me, Annabella and Anne all contributed lots of questions and suggestions……there was so much enthusiasm and experience in the room that will be invaluable to Rebecca.

It’s only day 3 of her PhD so I could see her head exploding with the amount of information coming out of the meeting but I’m sure she will be so well supported and hopefully we too can be of help
.
We’re in the wonderful position of going through this amazing project with Rebecca but without the pain of having to do all the work. It felt like everyone, including Rebecca was on a high by the end of the meeting.

Professor Alan also came up with the quote of the day looking at all the cakes on the table……..

“I have a very strong will and a very weak won’t” 🤣😂

 

TV Recording with my daughter……

I was contacted back in June by local ITV Calendar news to see if I would be available early September for an interview at home. This is sooooo unusual for TV people to book so far ahead as often it’s a last minute booking as topics appear in the news.

However they were aware of it being World Alzheimers awareness month and obviously had plans, which was nice good to hear.

Anyway , yesterday was agreed and the bonus was that Sarah had agreed to do the piece with me. Their aim was to ask about the general stuff – about my dementia and how it affects my life and family, what I do to raise awareness, why I wrote your book, what I do to help my symptoms – all good.

It was a very dull and drizzly day so not very good for filming. We needed the sun to shine really but it wasn’t playing ball…..🙄

Sarah arrived early and the reporter Michael, from ITV Calendar news, arrived soon after and right on time……

As usual, Michael came armed with all the paraphernalia that accompanies a reporter but he was very respectful, setting up and moving things, making a note of where they were.
He was also very smiley and such a friendly person.

Once set up he asked me questioned around my coping mechanisms, the effect on family, my book and all the wonderful opportunities dementia has brought my way. He spent a long time asking questions and made me feel very relaxed. He asked what I would say to others and I’m sure I must have said this many times before but….

“It’s a bummer of a diagnosis, but if you look at it as the start of a different life, a life of adapting, it can make the diagnosis easier to handle”

If I say ‘bummer’ the rest of the sentence appears from nowhere. It was strange as I felt the old me next to me yesterday. It was a good day. We often talk to one another but I remember her presence yesterday. The reporter had watched many of the films I’ve already made and fed me key words that generated automatic answers from the automatic filing system in my head. I felt the old me being impressed and saying, ‘Wow, go girl’. As I said, it was a good day.

He then asked Sarah some questions around how we cope as a family and Sarah spoke about the importance we’d placed on talking. She was of course very good, but then I am biased 😊

He finished off by filming various bits of the downstairs – we’d already agreed that upstairs was out of bounds….and 2 hours later he left.

I’m not sure when it’s being aired but they plan to show three reports through the month, one of a couple where the husband is living with dementia, me and Sarah and finally a piece from the Hospital setting. It’s good that they’re doing something as there’s been little on the telly so far for Alzheimers month…..

As I’m typing this I’ve realised something devastating…..I forgot to take any piccies😳 – what happened there Sarah?!!! Instead I’ll put a piccie of Billy who had my company afterwards as I was on Billy duty…😻 hopefully I only fed him once……🙄

So that was in the morning, in the afternoon I had another go with Skype as I had a call with Young Dementia Research Network. Earlier in the year we held our first conference and today we were discussing the next steps and future conference.

Once again I couldn’t get skype to behave. It worked perfectly for all of 30 seconds but then I could no longer see people even though I could hear them and they could see me🙄

We spent over an hour talking, me to a blank screen 😶. We know it didn’t all go perfectly but it was the first and we learnt so much from it. The young researchers who attended had so many wonderful ideas that we want to build on them and include them in the next stage.

We have some very good plans in the pipeline for the future…….the Network is a wonderful resource for anyone that wants to learn more about Young Onset Dementia.

More details of how to join the Young Dementia Network here:

https://www.youngdementiauk.org/young-dementia-network

I hadn’t been anywhere to do either of these but I was exhausted by the end of the day. Maybe it was the Skype that finished me off – the frozen screen meaning I had to concentrate hard on voices for over an hour instead of having the company of animated faces……..

A Triple whammy day……

Yesterday normality resumed and September started with people going back to work and some children going back to school😊 and for me it meant the start of ‘doing’ and a busy month ahead.

Now most people, after a break, may have eased themselves in gently with just one event….mmmmm…..well I had 3😳 but all local.

The first one was at Humber NHS Teaching Foundation Trust and the monthly staff induction day. I attend this each month when I can along with staff from the Humber Research Team. We talk to new staff about their role in promoting research in the Trust.

Well today it was the turn of Lauren and Emma to be delivering the session along with me. Lauren kindly picked me up from home and we arrived at Trust Headquarters for me to be met by a lovely cuppa tea and catch up before we headed down. Just enough time for a piccie – Emma, Me and Lauren…..

We arrived to find Michelle Moran, Chief Exec, coming to a close which meant it was our turn next. The room was packed with new starters.

The whole point of this session is to show how easy it is for them to promote research to patients and the Research Team themselves will do everything else. My bit involves saying:

“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.”

A nice round of applause finished off the session before our time was up and it Lauren took me back home…..

The last two were both by FaceTime. Firstly with Vasileios Stamou from the ANGELA Project. The purpose of this research study is seeking to understand how to improve support for younger people with dementia and families/supporters.

Vasileios was calling me on Skype….on which I often get in a pickle……and today was no different. Once he called me at the agreed time, I couldn’t remember how to make him appear on the screen or how to let him see me🙄 so I just kept pressing buttons until something happened.
In the end he could see me but all I had was a frozen piccie of him😶 but at least I could hear him.
He only wanted to hear of the positive help I’d received from services, so I immediately said that wouldn’t take long as I’ve had no help from services. My help has been from Peer support and my daughters so we answered the questions using those examples.

I also spoke of the support from social media as that also plays a huge part in keeping my outlook positive.

Peer support is important because we support one another; we show each other what’s possible; we don’t judge; we share a common diagnosis and that’\s what brings us together

Social media helps me keep connected; helps me to communicate in my own time and by typing instead of speaking and it also helps me educated.

And finally my daughters are the most important influence and support. We’ve learnt to talk like never before. It’s important for them to have the same confidence in my ability for me to keep seeking challenges and new adventures. I couldn’t do any of this without them.

It was lovely talking to Vasileios and the ANGELA project is a wonderful study. More can be found here:

http://www.ucl.ac.uk/psychiatry/the-angela-project

My final chat for the day was with an American doctoral student, Jenny Heuer, from Atlanta, Georgia. Her dissertation is a qualitative study where she is interviewing individuals with early-stage Alzheimer’s disease.

When my book was published in America I learnt that they only know it as Early Onset and never use Young Onset, which is interesting.

Anyway Jenny agreed to FaceTime me at 5.30pm which meant lunchtime for her so suited us both. FaceTime is so much easier than Skype as people just appear and you don’t have to remember to do anything.
So it was that Jenny rang at the agreed time. She said:
“This research is designed to gain greater insight into the experience, feelings and preferences of persons living in early stage Alzheimer’s disease”

Before we started we went through the consent form. She was saying that very little research has been done on the voice of those living with dementia. Most has been done through supporters or through the medical community.

We went through the ubiquitous mini mental test……before answering questions on the reality of living with dementia, how family, friends and the community see you post diagnosis and what I thought of the medical community….
Jenny shared with me her thoughts on the American viewpoint of medics and how we still had so far to go in educating – but America did seem to be lagging behind in so many ways. However, with the help of researchers such as Jenny maybe there’s hope of a catch up…..It was fascinating taking part in an American study. Lovely to talk to Jenny and hearing the differences and similarities that exist between the two countries.

I asked if she minded me posting a piccie and she was more than happy….😊

Brain Donation Annual Visit……..

The year I was diagnosed, I donated my brain to the Newcastle Brain Tissue Resource centre at Newcastle University. After all, how are we going to learn about the brain if people don’t donate…..? We can’t make a better world for future generations without research……

They are world renowned and have supplied tissue to ethically approved researchers who are looking for that vital clue….
It is part of the Brains for Research Network funded by the Alzheimer’s Society and Alzheimer’s Research Trust.

Each year I have a visit and yesterday it was June Edwards who came down to see me. She had three people to see in my area and I was her last so she was a little early which suited me fine.

She started by telling me how she’d read my book last week and had read it in one sitting! She said some very kind things and ended by saying that every trainee doctor and nurse should have to read it……..☺️

Then onto why she was really here……

The assessment part of the visit has been funded for a further 3 years by the Alzheimer’s Society and ARUK. Due to the extra funding there’s a bit more to do, but that makes perfect sense…..The extras include checking blood pressure, hand grip strength, a short walking test and reading a list of words.

The blood pressure is taken 3 times whilst sitting and 3 times while standing to check the vascular health; the hand grip is tested 3 times on each hand; the walking test is only over 8 feet and is timed, and finally I have to read a long list of words………..

But before all these extras there was the usual mood tests and then memory tests……..still didn’t remember the 3 words and still didn’t remember the name and address🙄

We went through what’s changed in the last year…..although I couldn’t remember what I could and couldn’t do a year ago – ha! So June just asked me questions about what I can and can’t do now.

The whole process must have lasted about an hour but was good fun.

If you havn’t thought of donating your brain, take a look at their website. Each region has it’s own Brain bank. Mine just happens to be Newcastle….…. If you live in the UK, the details are here:

https://www.hta.gov.uk/guidance-public/brain-donation

and I’m sure something similar will exist in other countries.

After all, we can’t change the future without research……..

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……