Category Archives: Research

Mental Health and Dementia Research Meeting…

Yesterday I was asked to speak at the NIHR ( National Institute for Health Research) Clinical Research Network in Yorkshire and Humber, Mental Health and Dementia Research Delivery Team Meeting – (crikey! Thank goodness for copy and paste!)

The meeting was in Leeds. Chris Rhymes, Lead Research Nurse in the area, had asked me to talk about the importance of having Patient Research Ambassadors. Some delivery teams and Ambassadors themselves, are unsure about the ambassador role and with all research teams from all the dementia and mental health organisations present, it was a good opportunity to stress the importance of including us in all they do and the value we’d bring.

I woke up to find it dark and throwing it down with rain. It was one of my silly o’clock starts……The taxi man was nice and early and we both chuckled as the radio DJ mentioned sunshine and showers, as we splashed our way to the station with the wipers on double speed……..💦💦💦💦💦

No photos of the sun beating down on the Humber today or any other view from the window as all you could see was the rain. Dark and dreary. I’d only had 2 hours sleep so I could easily have opted out of this one and let the day pass by, but my spirits were lifted as I was meeting up with my previous manager from Leeds Hospital – the lovely smiley Helen Gilbert and she can make any day feel like a sunny day.

I must confess though to seeing a few chinks of blue sky on the trundle to Leeds, so things were looking up. I didn’t know the venue, but I knew the road it was on very well as it was my walking route to and from work for many years. I used my walking app to help me get there and just as I arrived at the venue……the sun shone🙄
I was met by a nice man who was showing people the way from outside👍 and was met inside by an even lovelier site inside the room….

There were familiar faces and people who said they’d met me before 🙄 which was nice…….
Chris opened the morning by asking each table to come up with a couple of things they wanted to get out today. We were a real mixed room of expertise, which was nice to see.
The first speaker hadn’t arrived😳 so we went straight into listening to feedback on 3 studies in the area and first up was the lovely Sahdia Parveen from Bradford Uni talking about her research ‘Caregiving HOPE’ – Are people willing and able to support a family member. Willingness to care and ‘Preparedness’ are 2 different concepts.

Someone might be willing but simply doesn’t have the knowledge of how. Someone may have the knowledge but not be willing.Different transitions periods, (early, middle, end of life care) require different skills and very little is understood about people’s preparedness.
They recruited 187 south asian carers which was amazing and recruited 724 white british carers. That’s the most south asian carers recruited for any study – brilliant Sahdia!
I wish I could have recorded and played Sahdia’s talk as she said some really interesting statements, facts and figures, but I just couldn’t type fast enough…..

Next up was ‘Journeying through Dementia’ – Alisha Patel and Ben Thomas

It’s based on Lifestyle Matters programme – it’s been redeveloped to apply people with dementia, trying to show they how to have a ‘better journey through dementia’ We need to create an evidence base for effective interventions. It’s trying to enhance the quality of life from early diagnosis.
It’s a 12 week programme – the people living with dementia decide what the programme covers after getting to know them.
Again, interesting facts about barriers to recruitment and things that worked.
Quick break and the lovely Penny Kirk (Twitter friend) from NHS England came over and said hello and grabbed me another cuppa tea☺️

The third and final update came from Emma Wolverson talking about ‘Caregiver Pro’.

Emma is a clinical psychologist from my region in Humber. Caregivers pro is a multi disciplinary project with engineers, IT people as well as the usual team. Emma spoke about the GAP that exists in services, which the project is hoping to plug.
They’re looking at whether there is a need to fill a diagnosis with dementia through technology. It was highlighted that people with dementia were the biggest group of people who could benefit from technology and this is where Caregivers Pro comes in. Participants are given a tablet device each and supported lots in how to use it.
It has many sections on the web site but the social networking section specifically for people with dementia to ‘meet’ other people with dementia, has been really popular.
It has local information but it’s good that people can add a comment e.g. ‘Good group but mainly men” or ‘Don’t park here” etc etc.
Hull is the only site for UK Pilot (Yeh!) and it’s also in Italy, Spain, Greece and maybe other countries, I can’t remember.
They’ve had a problem recruiting……..and Emma mentioned East Riding not having a memory service………mmmm, yes, I know as that’s my region…..they’ve also met the proverbial gatekeepers in the NHS……..saying that people with dementia don’t like technology…….even though they’ll sit and help them…….🙄 If you live in the Hull area, this would be a brilliant project to be involved in.

Up before me was Penny Kirk and Charlotte Whale form NHS England Clinical Network
There are 12 clinical networks across England. They spoke about all the work of their Network programmes.
Lots of change in the NHS as usual at the mo, none more so than the new STP’s (Sustainable Transformation Programmes) and Penny showed us a lovely sentence which went something like this…….

Life is like underwear – change is good………🤣

I’ve been involved and still am involved in some way in all 3……….😊

Finally it was me before lunch………
I spoke about the value of every project having a patient ambassador as we bring the reality to participating. I said many things but ended with this:

Researchers and clinicians can talk all day long about why we should be involved in research. But to the patient listening, it’s simply a job that you’re doing. For a patient to hear another patient talking about why they should be involved in research, it’s real, no motives to meet recruitment figures, just a real description of what it did for them.
So that’s why you should all seek patient research ambassadors and make them your best friends.”

I left after lunch and had a cuppa tea with Helen in the venue cafe. The staff at this venue were wonderful – smiley, helpful and friendly – perfect and double brownie point for them👍


Taking to staff on their first day…..

Yesterday was a double whammy of local events. In the morning I was giving a brief talk to Humber NHS staff on their first day at work and in the afternoon was talking to student nurses on their first day at York University with my daughter Sarah.

So today I’ll tell you about the morning event.

Catherine Hart, Assistant Director Research & Development at Humber NHS Foundation Trust (thank goodness for ‘copy and paste’!), has done a brilliant job at getting ‘Research’ onto the induction programme for all NHS staff in Humber NHS Trust, no matter what their role.
Me and Cathryn do a double act in telling people how research is important for every employee and why.

It was a very dull day but Cathryn picked me up on her way to work. We had a catch up of all things summer but it was nice to see school children going to school… normality is gradually resuming after the confusing August.

We arrived in plenty of time in heavy drizzle☔️

Alison did her good deed for today and received another brownie point to go with her already growing mountain of brownie points for my cuppa tea.

It was soon time to go down to meet the new starters as we were second after the Chief exec.

They were from all departments and a very receptive bunch this time and a room full of them which was a bonus. They even had questions to ask at the end which made us overrun………perfect.

Because they are from all departments part of my talk included:

“You may well be sat there thinking ‘what has research got to do with me?
“You never know what’s round the corner.You never know when you may be grateful for the outcomes of research, especially if you or someone close to you is given a diagnosis of dementia and then you’ll be grateful for all those willing volunteers”

All Trusts should promote research at their Induction for new staff……

A very receptive bunch and obviously they were all given a Join Dementia Research Leaflet….

Tomorrow I’ll tell you about meeting student nurses on their first day at uni.

Research day… and participation!

Tuesday saw me having a triple whammy of research. The morning was taken up making a video for Humber NHS Trust and the afternoon was the second visit for the IDEAL research study followed by a Facetime with 2 researchers who whom I’ve been involved writing a journal article about to be published on employment and dementia.
By the end of the day I’ll be all researched out……

Anyway, it was a sunny start and Cathryn picked me up from home to drive me to the Trusts headquarters where the video was to be recorded.

The HQs is in lovely grounds…..

Once we arrived Prof Esme Moniz-Cook popped in to say hello and for a hug and once we’d had a catch up Alison came in with my cuppa tea – perfect start.😊

The aim of the video is to show Trustees and anyone else how much the Trust has achieved this year. So often, Board reports are very bland and impersonal but a video will add sparkle and reality to working for Humber NHS Trust. Many departments were being interviewed throughout the day and we were second on the agenda……

It’s so nice that Research is now part and parcel of all the work at Humber NHS Trust . This is due to the passion and continual hard work of everyone in the research team, but especially Cathryn. No longer are they the ‘afterthought’ but are now considered important enough to be in the mainstream work from the start.

During our interview we spoke of how far Research has come in this Trust over the last 1-2 years. The number and variety of studies carried out in the region. How researchers are and should listen to participants when designing studies. The challenges still faced in recruitment. The ‘Handouthope’ campaign I’m plugging nationally to help all healthcare professionals to see the positive effect they can have by handing out a Join Dementia Research leaflet.
We ended with our hopes for the future.
We said sooooo much more, I’m sure, but think we did a good double act 👍

Once we’d finished, Cathryn gave me a lift home armed with a carrier bag of freshly picked veg from Alison’s (administrator extraordinaire and perfect tea maker) allotment.

Saw a great poster as I was leaving.

It looks like jelly babies, but I’m sure it probably isn’t ……….

At 2pm Leah arrived from the IDEAL research project to complete part 2 of the questionnaire after my visit last week.
The reason for a part 2 is because they conduct the ubiquitous memory test at the beginning of each and it wouldn’t work well to do them both on the same day, hence the second visit.
It went much better this time and one of the questions was around how I thought they could improve the study, which was a good one to ask. This section didn’t feel as negative as the first.

My third and final research for the day was a Facetime call with Sue Richardson and Jannine Williams. We’ve been working on a journal article together around dementia and employment. They submitted the article and heard back from the editor asking for a some minor amendments – the word ‘minor’ was good to hear. After agreeing the amendments and having a nice catch up, that was the end of my third and final session for the day………… time for a cuppa tea😊


IDEAL Study….

Last Friday saw a visit from research assistant Leah from Leeds. I’m taking part in the IDEAL trial and this is apparently Year 3! I don’t remember year 1 and 2 visits🙄, which is hilarious, but hey ho.

Luckily they visit me at home for this one and my daughter, Gemma, is my buddy for this project. I always say that I have to share myself around my daughters so they both take part in different studies with me😊

The rain, which had persisted all week, had finally decided to take a break so it was a nice sunshiney morning.

The study was originally for 3 years but they’ve now been funded for another 3 – I think, which will mean more information than ever will be collected.

Its’ aim is to try to figure out what makes people live well with dementia.

While me and Leah were doing my questionnaire, Gemma was in the other room completing hers asking the same sort of questions.
The questions ask about anything and everything. Some of the questions really didn’t work though.
One major flaw, in my opinion, is the fact that lots of questions ask you to remember stuff from the last fortnight or the last year🙄😳
Now, maybe they compare with Gemma’s response to see if they match…….but once again that’s flawed as Gemma might not know. The fact that I had to keep guessing the answers also made me feel very sad and down. I realise the answers might be supplying valuable information but at what cost to the participant? It’s suppose to be research looking into what enables you to live well but their very questioning highlights so much of what you can’t do or can’t remember.
The ubiquitous mini mental test does nothing for me either as that’s always a very negative test, but I can see why they have to use it.

This project has amazing potential to collect really useful data over a 6 year period and I’m really in favour of such a long detailed study, but I hope they consider changing some of the questions in their next 3 years……I realise this will mean another trip before the ethics committee but researchers should consider the impact such questions have on the participants.

Leah will be back in a couple of weeks for part 2 of this visit… we’ll see if that’s more positive…….

Pre AAIC Conference…Part 2

I decided to take my lunch back into the conference room as it was all getting a bit much as so many discussions were taking place, which was good but overwhelming. So after a nice lunch,  it was the turn of Kathy McGilton and Jennifer Bethel, University Health Network, Toronto, Canada. It was so nice to meet and share a table with these wonderful Canadians.

Their talk was entitled, Patient engagement in dementia research and their preliminary results.

They spoke of seeking out research that has involved people affected by dementia to assess success
Kathy spoke about research supposedly being of a higher quality if people affected are involved but how much evidence is out there?

They asked do we have any evidence that evaluates patient engagement.
Jan then spoke about the methods currently out there. – approaches, barriers, enablers, impact that this has had.
They looked for studies where people affected were engaged – they didn’t include papers that concentrated on how to engage health charities. Just those involved who’d engaged people affected by dementia.
They excluded those that involved charities, philanthropy, and only looked at papers in the English language.

They eventually found 41 papers that fitted their criteria, the majority of which were from the UK, which was good news.
The slide below shows their which showed the data of their preliminary results.

How were people involved? Steering and Advisory Committees, Co researchers, Co-authors, Focus groups, stakeholder meetings,

Barriers that people identified were times and resources, issues of changing health and cognition, recruiting people with dementia was raised as a barrier, several papers highlighted that those being engaged were in the early stage so not representative of the whole spectrum of the condition.
Research ethics board were a barrier to some as they wouldn’t allow people with dementia to data collect, and insisted they had to have a supporter.

Enablers – logistical aspect, individual needs to allow engagement.
Impact – few papers measured the impact of engagement.

So where does co-design fit into this.Technologically engagement does fit nicely with co-design, but others don’t.

Really good talk by our Canadian friends.

Next up was anna Grinberg-Saul who spoke about the work of the Research Network )of which I’m a member)within the Alzheimers Society and the impact of volunteer engagement in all its work. She went through the variety of roles we have – lay reviewer, research monitor, board and panel members and representative on research strategy council,

Anna then spoke of her findings of the impact of the research network. Impact on volunteers was around the value of contributing, learning about dementia research, using existing skills, we build relationships with researchers, enables peer support.
Impact on researchers – it grounded them in the real world, for biomedical researchers it helps them to focus on the long term impact rather than the biological challenges.
It helps researchers focus on their lay communication skills

Helps early career researchers develop their personal skills through having engagement with lay monitors.

Impact on research – instead of just thinking of clinical outcomes, they think about how it affects the person
Dementia friendly study design – how it’s carried out and how it’s designed.Monitors challenge researchers on methodology – one required a task of colour vision, whereas monitor asked what about ‘visually impaired’
Engagement can bring a new perspective on research data.

The Research Network is likened to a golden thread holding things together.
Anna showed a quote of mine:
“They (the researchers)might have the passion, but it’s still a job, we bring a different personal passion”. It’s a Partnership – it’s like having toast without butter.

Anna finished off with a brilliant slide:

Brilliant slide – 4 cogs, each cog equally important – volunteers, researchers, research and organisation.

The Society gets many thing wrong but the research network is one thing they have right, well almost.

Peter Mittler spoke out about how this should go out nationally and not just be kept to the Alzheimers society as it’s about patient/user involvement for anywhere. It’s about the whole area of user involvement. We should start disseminating to other organisations.

I sadly had to leave before the last speaker, Marc Wortman, due to the time of my train as direct trains are few and far between, plus it was getting to brain drain time.
It was wonderful to be at a conference with people from so many countries, hearing their views and perspectives. Let’s hope it becomes an annual event. The next one is due to be in Chicago next year……..mmmmmm, never been to America😊

Pre AAIC Conference…Part 1

So following on from yesterdays blog, Friday saw me as the first speaker at the pre AAIC conference (Alzheimers Association International Conference).

I’d done a reccie of the venue the evening before so I knew where I was heading and had it logged into my walking app as well, just in case………

I made my way in plenty of time and was met by Anna Grinberg-Saull who immediately noticed they only had little cups, so asked them to find me a mug – instant brownie point!
Many familiar and unfamiliar faces came and said hello, many countries represented here, Canada, Netherlands & Norway which was wonderful to see. It was notably lovely to see Matt Murray from the Alzheimers Society, who I hadn’t seen for ages, and so nice that Peter Mittler was also there.

Colin Capper said the first hellos and went through housekeeping, including the fact that there was due to be a fire alarm😱 Important things like # PPIindementia was the hashtag for twitter (and which I forgot to use🙄)
Patient and public involvement is defined in many different ways. Today, we may look for definitions – research should be with and by people affected by dementia.So how do we effectively involve?

Pauline Tardiff from Alzheimers society in Canada then said hello as it was a joint event between both countries.

Then it was me to be the first speaker, where I spoke about  how research may not be for everyone but it’s our right to know about research and be supported to take part if we wish to do so. Research can give us hope for the future. How overprotective family as well as healthcare professionals can deem it inappropriate for us to take part. What I’m forever saying is ‘To normalise talking would be to normalise involvement’. The public need more information on the true meaning of research. I said how, in my region we have ‘research’ on the agenda of the induction programme for all Humber NHS staff, no matter what their job.

Thank you Matt for the photo:)

I spoke for 20 minutes so said loads of stuff and it seemed to go down very well from the enthusiastic applause.

Next up was Simon Denegri,who spoke about how the NIHR (National Institute for Health Research)were so pleased to be involved here.’From little seeds amazing things do grow.”
He was glad I started my talk about human rights. He showed a slide with a definition of ‘subject’ – a person or things that is being discussed, described or dealt with. He spoke again about the importance of language and showed a research picture that used the word ‘guinea pigs’ which we must move away from and instead replace by ‘Partners’ – research carried out with and by rather than to and for people
Things were well if done in partnership – just as the relationship between person with dementia and their supporter is key, so is the partnership between researcher and person affected by dementia.

Loved this slide. – ‘health has two sides and one of them is you”

He spoke about INVOLVE and how it was established in 2006 – it’s funded and part of the NIHR. Although I must add, that they declined my application to be involved with them ………. INVOLVE tries to facilitate the training for researchers to understand how to involve patients. James Lind Alliance come under the umbrella of NIHR and are brilliant at engaging patients to set priorities for research.
He stressed the point of not involving people when you’ve established your research, involve them from the start.
All evidence shows that if you include patients as partners, it strengthens performance and success.

Nice slide of developing an international network..

Public involvement is a must have. But the next challenge is how can we now make best use of evidence.

Peter Mittler spoke of the need for a finer balance between research on cure and research on care. How can we get more social science researchers involved. What can the biomedical community do to give more support for social science research? Simon said we need to challenge funders to improve the funding given to social sciences researchers.

After a much needed cuppa or two, and lots of conversations with lots of people, it was the turn of Larry Chambers, Direct of research of McMaster University in Canada.He chaired the objectives of the table discussion that was to follow.

Ours was a multi national table featuring Norway, Canada in abundance and UK. We were given the support question. “How can people living with dementia and their caregivers be supported to become involved in research?”
Our table came up with loads of ideas, but I was feeding back to the room so said, what I hope were our main points of:

Everyone needs to change their attitude to research and allow research into everyday conversation. One clinician suggested having it as part of appointments in memory clinics.
Flexibility and approachability – train researchers how to approach prospective participants because not everyone instinctively knows how. Important to communicate and be accessible the findings of the research.

Matts’ group used the analogy of a bicycle – One wheel Process, One wheel person driven. If the 2 work correctly, you have a working bicycle – wonderful!

We have to translate research into practice.Peter Mittler emphasised the part the CQC (Care Quality Commission) can play on ensuring best practice is implemented.

Phew! A busy morning so will leave the afternoon until tomorrow😊

Involving the public and patients in research….

First blog for a while as I’ve had a tricky week or so🙄

Anyway, last Thursday saw me heading down to London for an overnight stay in preparation for speaking at the pre AAIC conference (Alzheimers Association International Conference). The event was described as:

“This pre-AAIC one day conference brings together delegates from different countries to discuss how persons with dementia and their care partners can become a more essential part of research processes. Following a successful event last year in Toronto we invite UK and international guests, to come together in London share examples of successful involvement in dementia, towards bringing common understanding of the emerging science of patient involvement. This inclusive meeting will allow anyone wishing to share their experiences of patient involvement in research through the interactive sessions.”

It was nice having an afternoon train, as it meant I could just catch the village bus into town and then amble to the train station. It was a nice warm day, no hot sunshine, no rain, perfect. Finally managed to get a piccie of the poppy field I’ve been passing for weeks and never managed – not very good, but the red says it’s poppies.

Sadly, once again, I had the misfortune of being on a Virgin train equipped with grumpy crew. I always thought Virgin to be a happy lot in days gone by either that, or I’ve been very unlucky two journeys running. Maybe it had something to do with the ‘borrowed’ train, with no working wifi, or maybe the rubbish tea they serve………….🤔

Anyway I got to London on time and I’d decided to walk to the hotel near Russell Square as it was quite warm and I thought the tube would be chaotic as it was nearing rush hour. It seemed simple enough on my walking map, and I had my app switched on as well.
Goodness knows what happened, but I veered off route……..and then got lost😳. I walked round in circles for a while and then just stopped to work out what to do. I looked around me and realised I was near my publishers. Me and Sarah had been there a few weeks ago and I must have been making my way there😱. I decided to reset my app and head back to Euston Road and start again………….

I soon realised that instead of going straight I’d gone right ……..big mistake.
Anyway, I found the hotel and had a cuppa in my room so everything in the world looked fine again. I then had to go out and find the venue for the morning which turned out to be much simpler. On the way back I ventured into Russell Square to sit for a while out of the way of the hustle and bustle and took a couple of photos….

More on the actual Conference tomorrow.


Annual Meeting of Join Dementia Research…..

Yesterday saw me trundling down to London for the annual meeting of Join Dementia Research Champions. I hadn’t had a very good week so far so I was hoping my head was going to behave in order to get me there with minimum stress as it was a venue I hadn’t been to before.

It was due to be mega hot down south, but I found myself needing a jacket at it was an early start and the temperature was only 12 up north…….🙄

The meeting was due to start at 10.30 so it was silly o’clock start and a very misty hazy morning. But the taxi man was nice and early so the day started off well.
The first train got me to Hull fine and then I realised I was on a Virgin train instead of my favourite Hull Trains due to the time I was travelling. Virgin staff aren’t as friendly as Hull trains staff and sure enough, an unsmiley faced grumpy man appeared for the tickets. I know it was early but a smiley face would have made him and me feel so much better.
The other downside of Virgin trains is that, unlike Hull trains, they don’t serve Yorkshire tea………..unsmiley staff and no Yorkshire tea 😱 so they have little chance of any brownie points.

As we headed towards Doncaster the sun was desperately trying to make an appearance,to cheer everyone up but it was struggling……

I kept being too slow to take pictures of the lovely poppy fields we kept passing😩

Once we got there, I made my way outside but immediately found I’d forgotten my pink ear plugs as I didn’t have my usual coat so walked with one finger in my ear and walking app in the other…🙄

Anyway, I found the hotel and found the room and got my cuppa tea. Andrew Rutherford was there along with the lovely Hilary Doxford.

There were twelve of us from different regions in the country which was very disappointing as there are 40 people nationwide, but the usual restructure of the organisation had left people lethargic so hopefully after today, people will have renewed energy to get everyone back on board.

We eventually sat in a circle and started off by having to do some colouring in…..😳 there were various cars depicting various circumstances and we had to say where we were with JDR by colouring in a car……

We went round, introducing ourselves.

I said I feel isolated and not part of a team. But from a personal perspective, I feel like I’m racing along in my region and elsewhere. Everyone else said very similar things and there were some very consistent themes.

So the 2 major themes of the day to discuss were:
Improving the volunteer experience and growing the JDR community

Volunteering experience –
How do we build a community of JDR champions across public patients and the NHS. We said how we need to get healthcare professionals to become champions and I suggested them having to team up with a person with dementia to get more of us involved.It always works so well when I do that as it makes people with dementia less fearful if another person with dementia is talking to them alongside healthcare professionals.

As for growing the community, many suggested the advantage of encouraging the young to be champions. They have so much energy and enthusiasm. I’m always saying how students are my favourite people😊

I hadn’t realised, but downstairs, the clinical research people were also having a meeting and we were all due to have lunch together but due to a mess up by the hotel, they put us in separate rooms🙄. Me and Hilary went and said a quick hello as there were 2 people from Yorkshire and Humber and I didn’t want them to think I was a no show!

It was a strange meeting, nice to see everyone, but hopefully the next one will be more constructive.

We won’t solve everything in a day but tomorrow will do…..😊

For the journey home, normal service resumed……..trains delayed en route, missed my connection….but won’t bore you with the details..🙄
But the heat of the day had meant storm clouds were now gathering..

Join dementia Research is funded by the Department of health and delivered in partnership with the National Institute for Health Research, Alzheimers Scotland, Alzheimers Research UK and the Alzheimers Society.

Induction for all Trust Staff……

Yesterday I stayed local again. Cathryn Hart, Assistant Director Research & Development Humber NHS Foundation Trust, has managed to get research onto the NHS Humber Trust Staff Induction day.
I said in my blog yesterday how Michelle Moran, Chief exec of the Trust said on Friday how the Trust is actively supporting research, and allowing Cathryn to talk to all new staff each month at the staff Induction day, reiterates this support.
So today was the first session and Cathryn has given me 5 minutes each month to help sow those seeds in new staff from all directorates – clinical and non clinical.

Cathryn picked me up from home and was amazed, gobsmacked, surprised to hear, I didn’t want a cuppa tea when we got to her office😳. I’d not been feeling too good all weekend and it seems to have taken my desire for tea away😱 but I’m sure I’ll be back to normal very soon.

Anyway, back to today,…….it’s so good the Trust encourages research from staffs very first day in post. There were clinical, admin, all sorts of staff present. We were after the Chief exec so we expected them to still be very quiet but still awake.

All we expected to do was sow some seeds of recognition, after all, we only had 15 minutes.

Cathryn did her bit around the work of the department

and then left me with the final few minutes, during which I said……

“You may be sat there thinking, what on earth has this to do with me, it’s nothing to do with my job? We have to normalise talking about research, to normalise talking would normalise involvement. And if you don’t think research affects you, you may change your mind if you or someone close to you was suddenly given the devastating diagnosis of dementia”

Both our messages hopefully conveyed the HOPE that research can bring to people.

My final sentence being:

“Research gives me hope that my daughters and you will have a better future.”


Doctoral Training Centre meeting – Bradford Uni…

Yesterday saw me off to Bradford University. This time it was a meeting of the Carer reference panel and Alzheimers society research network meeting all in one for the Doctoral Training centre
Bradford is one of 8 Doctoral Training Centres funded by the Alzheimers society. Their aim is to help develop the next generation of dementia research leaders. Many of you know my passion for encouraging students, so I’m more than pleased to be involved here.

I was hoping for a nice summers day…….lots of warm sunshine………but the whole week had been a wash out and Thursday continued in the same vein and was damp and dreary.
However, the trains behaved themselves and 3 trains later I was there.
I always like to walk from the station up the hill to the University as it’s a pleasant walk

Once I got there I got totally lost as we were in a different building – it looked easy to find as it was call the ‘Bright’ building………but when I found myself out the other end, I knew I’d gone the wrong way.🙄

But then I saw 2 familiar figures at the top of the hill and walked back to where I’d come from…….The reason I couldn’t find it was because the sign didn’t say ‘Bright’………….🙄 It was a lovely building inside though

However we arrived and I was met by Prof Jan who got me a cuppa. ☕️ immediate brownie point👍

All the students arrived and the lecturers, volunteers, and we went round the table with introductions………
Barbara’s Yorkshire A team were in situe as Me, Sandra, Louise, Vivien were the Alzheimers society monitors for this project – I think!!

Courtney Skyped in from Portsmouth emergency department.

Barbara chaired the meeting.

First up were presentations from 2 of the students.

Denise De Waal spoke first about her research – ‘Daily life with dementia and other health conditions in the community’ – the importance of understanding how people with dementia can continue in their daily life along with other health conditions.

She has joined in with her participants daily life, just being with them, helping do the dishes. Lots of observation.

The examples she chose to speak about were – wearing glasses and medicine management – basic everyday things for some of us.

Imagine having dementia and wearing glasses. – what happens if you don’t have them or can’t find them? – you lose confidence, you can’t see people’s expression, can’t read, get confused as to why you can’t see.
Akhtar asked if a supporter didn’t wear them does the person with dementia know who they still are which was interesting.
The eye test in itself was testing and having new glasses is a trial as they’re not familiar.The husband asked if Denise wanted to go with them to the opticians. First thing the person said when they went to pick up new glasses was “They’re not mine, I didn’t choose them”

Denise has visited them since and the lady had become used to the new glasses.

Medication – how difficult to have dementia and take medication. Barbara was saying she always had the same conversation with her mum as she asked what they were and why she was taking them.
I was saying how chemists often give you different shaped and colour tablets each month.
Denise was demonstrating the complexity of having dementia and simply daily life.

Fascinating study that’s not been looked into enough, so good on Denise.

Next up was Akhlak Rauf around his research around understanding how South Asian families cope with dementia.

He started off by describing equality of services and the reality. Some people have a lot of access whilst others struggle to gain access.
Dementia doesn’t descrimnate but policy is lacking as far as the BME communities.

Aim – to get an understanding of socio cultural and religious issues factors
And to identify transitions as step changes in levels of care needed that will enable coping strategies at various stages.
He said professionals should be asking ‘What are the transitions according to people caring not what service providers think the transitions are’.

The word ‘transition’ is one professionals use and is meaningless to families.

Akhlak is just looking at it from the carers view. He told us of his preliminary findings.
He found one message coming out was getting information when people wanted it not when professionals thought they might want it. They want to look after their own with support whereas professionals think they’re ok because they’re looking after their own – both have very different meanings.

Akhlak doesn’t want his findings to gather dust on a shelf – he wants it to influence change for the BME community. His talk showed the complexities and assumptions that people mistakenly make about the BME community.
Another great project.

We then had a lovely lunch – before discussing in pairs first how we thought we could work better together.

There was a slight blip in so far as we ran out of teabags😱, which almost lost them their brownie point, but Jane kindly went and got me a cuppa tea from the café so all was forgiven but that went at the top of the lessons learnt sheet for today.
‘Never run out of tea bags” – criminal offence……..😊

Loads of ideas floated around the room with the aim of giving the students as much support as possible, after all, we all have one aim for them – to stay in the field of dementia and become the next research leaders

Murna thanked us for coping with the ‘Discombobulated meeting’ – lovely name…….it’s a new process so will always have its ups and down but today was wonderful as ever.

I was shocked to hear that there is no funding for the next intake – which is very sad as that gives out the wrong message. The Doctoral centre at Bradford has put together such a fantastic model that it shouldn’t be allowed to simply stop and disappear.