Category Archives: Research

Yet another interesting day travelling… to the end!

Several weeks ago thieves stole all the lead off Beverley station roof – it then rained and the consequence of that was all the machinery was waterlogged. The information boards that I check each time, the ticket machine where I pick up all my tickets, the ticket office that is always so kind and helps me……were all closed, broken and silent …….So I and no one else knew what train was coming, whether it was delayed, whether it was cancelled. I had to go into Hull to collect any tickets ordered for me.
Total confusion and the information boards remained still and silent………

I’d been told it might be months before everything was working again. However, this cold frosty morning, I had a lovely surprise as everything had come to life again! They had pulled out all the stops and now everything was shining brightly and boards told me where and when trains were going – perfect – happy unconfused bunny again and thank you to the stars who fixed it all.🎖🎖🎖

Anyway, after that bright, if dark start to the day, my train and connecting train were even on time and this one was waiting for me in Hull….

It’s never dull in Hull…..😊 certainly isn’t during the City of Culture year!


The sun was slowly rising as we trundled through the countryside.

So yesterday I was on my way to London. I was going to Crutched Friars as part of the Alzheimers Society Research Network Communications group. I hadn’t realised I was part of this group until the invitation came 🙄
But I was going to see lots of my friends so I was happy to be trundling down. The aim was to talk about how we, as network volunteers, can answer best the questions we’re often asked and how we can help in disseminating good research.

Everything was going fine until I got to the tube station….’No Tubes to Tower Hill, alight at Aldgate’🙈 Here we go again me thought…….a nice man told me which way to walk outside the station and I then took a while to set my app to talk me to Tower Hill…….very pleased with myself when I finally arrived at Crutched Friars

I arrived to find Barbara, Sandra and Matt already chatting as we had a meeting with Matt before the main event to discuss a very exciting event the 3 of us are organising in York on the 14TH MARCH!! More to come soon.

We then went into the main meeting and Anna opened the session clarifying the aims.

Aoife Kiely- (I had to keep asking how to say her name as I kept calling her Iffy (😳) but it’s actually Eefa😇 ) – joined our table as it was her very first day as communications officer! She was a former scientists at UCL!!

A nice new playmate…

I mentioned how we need to be less formal and make it fun – sow seeds of the interesting stuff we do and ‘taster sessions’ to give people an insight into all that’s available to get involved in…
I thought it would be good to encourage couples to become involved in the research network as then they can support one another – a supporter and partner with dementia working together in the network and also able to work separately with support if they want to.

We thought of loads of ideas!

I also suggested they need a Twitter account as what better way to get all the wonderful things we do out to more people.

Lunch time arrived and there was no tuna on the plates brought in and I would have been fine with just a cuppa or 3 but Tim earned a bucketful of brownie points by actually going out and getting me a tuna sandwich, having read my blog about eating. That was the kindest thing to do…..🎖

After lunch we started with discussing the Key message – the what and why.

People rarely take in much when being spoken to so it’s important to – Tell people what you’re going to say – Tell them – And Remind them at the end

Dissemination  is key to the relevance and real value of any research. If it’s not implemented the public will see little point in the process.

Brain started to switch off around 2.30 as we headed for a reflection of the day but words appear to be lacking on my ipad at this point apart from making it clearer how flexible the role can be to encourage others who may be a tad daunted by the network to become involved and volunteer……

Final photo had to be the 3 amigos from Yorkshire…….

However….that’s not the end of the story, as I’m typing this on a very strange and unfamiliar train going anywhere but my usual route…….🙄…….you may have heard of all my nightmare train journeys…..I got a txt from my daughter asking if I was ok as there was problem at Kings Cross😳. At this point I’m on the tube and quite hunky dory……I arrive at Kings Cross to find total chaos and all the boards saying ‘Delayed’ ‘Find alternative route’😱🙈😳🙈🙈

Luckily Gemma had already done this for me and txt me to go to St Pancras and get a train to Sheffield and then get a train home😴. I then proceeded to St Pancras to find a mountain of people all waiting for the same train. It would mean my journey would be 2 hours longer🤐 but at least I had a Gemma to give me instructions as many were just wandering about totally confused……🙄 and I would have been one of them if it hadn’t have been for Gemma. The stories were of a sad death on the track or major security alert – I was almost hoping for the latter…

Very tired as I passed through Leicester…..not a usual city I see on my travels……good job Tim bought me that tuna sandwich as it might be the only thing I have today as it’ll be too late to eat when I get home…..


Hull Recovery College Experience……

Friday I was with Cathryn Hart, Assistant Director Research & Development at Humber NHS Foundation Trust.
Me and Cathryn do many double acts together and Friday was one such case as we were running a 2 hour session for Humber Recovery college

Fabulous graphics in their course booklet😊

It was the first time they’d put on a Dementia session so no one knew what to expect. Me and Cathryn had thought it would be supporters or people with dementia attending so we’d written some notes around that assumption.

We hadn’t realised that we’d been suppose to promote the session to attract attendees so knew no one might turn up………

Anyway, Cathryn picked me up early as planned as neither of us had been to the venue before .

I spotted it as we were driving around. Once we’d got inside we immediately found the kettle…..🙄

We were surprised when 3 healthcare professionals walked in – nice surprise obviously, but not what we’d planned for. However, we were quite upfront with them and told them we were winging it a tad.🤣 Obviously tea and coffee was the first on the agenda – I forgave the coffee people as it does mean more tea for me😊

Two nurses were from the Learning Disabilities team and one from Mencap. We were also joined by Acho from the Recovery College since they’d not a session like this before.

They all dealt with people with dementia so I went through all my challenges and simple solutions. They, like many professionals weren’t aware of dementia affecting so many of our other senses so I filled them in on that as well. I sent them the link to the Sensory booklet by Agnes and Donna Houston as well

We spoke of all the research that went on in the area and the Hope this can give to people. Cathryn filled them in on the work by the research team

They were very animated and chipped in lots of time asking anything and everything, which was so nice to see. Even though there was only 3 of them I could tell by their faces that lots of seeds were sown and mindsets changed. Acho also learnt a lot about dementia just by being there.

All sessions are free and they run the most diverse range – amazingly diverse really. You can find more on the Humber NHS web site

However, maybe the publicity needs a revisit as I’ve spoken to many people who havn’t heard of it, which is sad as it’s a good selection of courses that NHS Humber Trust offer. ‘Recovery’ College may not be the first place people with dementia may look for help as we all know we’re not going to ‘recover’. However, it could be advertised as ‘Recovering from a diagnosis and learning that it’s not the end’……

I meant to take a photo of all of us but I thought of it at the beginning and didn’t want to frighten them off and then promptly forgot at the end🤐 But I managed to get a photo of me, Cathryn and Acho.

It’s happening all over again at the end of next March so hopefully we’ll get more people next time.

Another trip to Bradford……..

So yesterday I was at Bradford to monitor the research being carried out by Sahdia Parveen – Caregiving Hope.

Society in general is very good at making assumptions. One such assumption is that South Asian families affected by dementia, will ‘look after their own’. But when these assumptions are put to the test often more complex findings emerge.
The study being carried out at Bradford by Sahdia Parveen, ‘Caregiving Hope’ is looking into the question, ‘Are families willing and able to care for a family member with dementia?’
Some may be willing but do they have the skills and knowledge? Others may have the skills and knowledge but are they willing?
Years ago families used to live close by. People didn’t move away through desire or for employment purposes as this was often on their doorstep.
Now it’s no longer the norm to remain in the same area or work locally. Families often have many miles between them.

Anyway…….It was another misty murky morning but at least my mood was a little brighter today after a raft of twitter tweets about the meeting last night. At least it was light when I left today…😊

Once again my taxi was on time as was all three trains🤐 Once again no piccie of the Humber as the mist and murk made it appear half built😶

But instead I got a piccie of the Fountain in Bradford Square ….

I arrived to find Sandra in the café downstairs.

Once we made our way upstairs Sahdia immediately earned a bucketful of brownie points by saying ‘I didn’t trust the caterers’ tea to be up to scratch so I bought a pack of Yorkshire tea

Once everyone had arrived Sahdia reminded us of the aim of the project – What would enable carers to feel more prepared and what are the cultural differences between White British and South Asian carers?

Sahdia has recruited an enormous number of carers – in total 717. As expected most of the carers were female. The white british were mainly spouses but for south asian they were mainly child carers or in law carers.
South Asian said they had more family help but White british said they had paid or no help.
We had discussion around the possible reason which was fascinating.

South Asian did feel more cultural obliged to care. But cultural obligation doesn’t mean ‘willing’. It showed they were less willing than White British.

Sahdia research showed how white British are more prepared than South Asian. It’s the only study that has looked at ‘preparedness’ in this country. The only other one was a Canadian study.

Lots of studies only look at negative aspects of caring whereas this one also looks at Carer Gains. South Asians felt they gained respect from the elders, community and God.

Results show if we change preparedness we can change the outcome for South Asian Carers. We can do something about preparedness – we can’t do anything about cultural obligation, willingness etc but we can educate and give people knowledge.

Sahdia’s study have thrown up some surprising results and some less surprising ones – many of which have never been evidenced before.

Our next meeting would be to discuss a book of Tips for Carers along with photos taken by participants, which is very exciting.
Htay, the third Alzheimers society research monitor, had arrived just in time to catch the end of the feedback session and just in time for lunch so straight after the others had left we three research volunteers stayed onto to fill in the gaps we needed to feed back to the Society.

One of the best studies I’ve seen which can actually have a positive outcome for carers/supporters

The 3 A Team Alzheimers Society Research Network Volunteers, Sandra, me Htay, along with Sahdia😊

Trip to Bradford…..

Yesterday I was at one of my favourite Universities, Bradford for a meeting of the BHiRCH Yorkshire Carer Reference Panel meeting

I’d got in a bit of a pickle in the morning🙄 as the day before I’d booked tickets for another meeting there next week so had this one in mind……very disturbing when I looked at my pink folder on the kitchen worktop telling me I was going for something totally different! The timings of everything for a 12 O’clock start also didn’t seem to make sense and I tried to work backwards to see why I was leaving at 08.30…More confusion followed as my brain has enough problems working forward, so backwards was never going to work😂

But once again, forward planning won the day as clipped to my train tickets was all the details I needed of all the connections. That’s why I had to leave early as I had to change trains twice and wait for connections.😇

I decided today was the day when the taxi office needed a new supply of treats from me as they’d been very goods lately and I wanted it to stay that way, so nice thick choccie biscuits was going to earn me some brownie points. The look on the face in the office when I appeared with them told me they’d be gone very quickly.☺️

Anyway, at least I’d been organised at the weekend and got the right papers ready for the right day….. BHiRCH stands for Better Health in Resident’s in Care Homes.

We were also having a data analysis session afterwards for some of us. We’d expressed an interest in seeing how qualitative research was analysed and were going to see if we could be of any help working to the researchers🤓. Whenever I look at data I know when something isn’t logical but havn’t a scooby doo why or how to put it right😶 so it should be an interesting experience!

The first train was on time👍 I had a little wait at Hull station and almost missed the next train as I was mesmerised by a wonderfully talented lady playing the ‘Give us a tune’ piano in the station foyer. She really was truly amazing and I wasn’t the only one to suddenly get up and rush for their train

Statue of Philip Larkin being entertained by this amazingly talented pianist..

Even the second train was on time! The rain had started to drizzle as we pulled into Bradford but I still walked up the hill as it’s such a pleasant walk although ‘blown up the hill’ is probably a better description as it was very windy.

I snook in with the students at the first entrance and found Barbara & Sandra in the café. Once we went up to the room there was Penny, Katherine and Alan who immediately took a piccie to put onto twitter

and Sandra number 2 followed quickly behind

Alan gave an update first. 14 Care Homes have been recruited for the Pilot trial and half will receive the BiRCH intervention and half will be the control home.
The detail about the Ethics committee was an interesting one…….I really thought ethics committees worked to exactly the same process and detail…..nope….

This amazing project is hoping to show how it’s possible, through knowledge, education, listening and observation to pick up on changes in residents quickly to enable a better care provision in Care homes.

A training day will be delivered to the Champions in the Care Homes and the family’s perspective will be part of the training. Barbara would represent the family perspective in the north and we discussed what points should be brought to the table at the Care Homes of why families should be involved in the discussion should they wish to be involved.

We then had a lovely lunch before carrying on.

The complexities of research are such that there aren’t just many hoops to jump through but a mountain of tangled wool to unravel

Catherine Powell, research fellow, joined us in the afternoon for the data analysis session.
Principles for qualitative data analysis– what do we want to find out and what does it mean?
And how do we want to do it.

The discussion was absolutely fascinating – the process of analysing a whole load of words was really mind boggling.

We’ve now given Alan a week to complete the research so we can get started on the analysis 🤣

Fabulous photos of all the female Professors at Bradford in the foyer including the lovely Murna Downs and Jan Oyebode. The University admits females are under represented and should do better but also celebrates the amazing ones they do have.

Young Dementia Network……

After my rant blog yesterday, and thank you to the hundreds of people who got in touch via my blog and social media…… it was nice to be trundling down to London to be with like minded individuals and people who restore my faith in healthcare professionals. This time it was for the Young Dementia Steering Group.

The meeting is always held nearby Kings Cross, which is perfect for me, at the Esme Foundation offices. The network is attempting to:
“Provide opportunities for members to share experience, knowledge and to learn from one another”

It was a cool but thankfully dry day today. The taxi was on time and I commented how brave the taxi driver was by wearing a sleeveless top. Her response was ‘I refuse to let go of summer just yet’🤣 as the goosebumps kept her warm……….😊

The sky had refused to unveil a lovely blue and were very grey so no picture of the Humber bathed in sunlight.But as we ventured further south the sun did decide to try and make an appearance.

I had a little wait at Doncaster so since I was very thirsty🙄 I sat having a cuppa tea, minding my own business when suddenly the fire alarms went off😳. As the man saw me with my fingers in my ears, balancing my tea precariously on my lap, he told me it was just a test…….so one finger in one ear and the other hand rescuing my tea. I’d just sat back and relaxed again when it went off again, nearly knocking my tea over😱 Well it gave the tea man a chuckle for the day…….especially when I said he would have had to replace my tea if I’d lost it……🤣

The train was very full😩 and I had one of those window seats without a window view😳 so just kept my head down playing solitaire……

There was an amazing new sculpture in the foyer of Kings Place…

I ambled upstairs and found Prof Jan just putting the kettle on👍

Vasileios, research assistant on the ANGELA project from Bradford University, had come to observe today, which would be very good for him and also lovely for us to meet him!

Donna showed the new research page on Young Dementia UK web site:

I was saying how it would be interesting if we could view how many people view what article or what seems to attract interest as many who don’t have our passion find research a tad flat and dry and we want to instill enthusiasm😊

There was then much discussion around Dementia Congress where we’ve secured a workshop. Jackie filled us in on our Inaugural Research Network event next year – more about the date to put in your diaries when we have a confirmed date. We seemed to have achieved an awful lot since our last meeting……..

Lots more people joined us and we had lunch while we were having a catch up with each other. We then did a quick whizz round the table for introductions for 2 observers today.

Tessa highlighted our biggest achievement is by actually being here, putting Young dementia on the map/ Donna said we’d had a target of 1000 members of the Young Dementia Network in the first year……. we‘re almost at our first anniversary and have 965 members! So anyone wanting to join – click on the link below…

Donna plans to make video clips of people with dementia to highlight challenges we’ve had and how we’ve overcome them – so those diagnosed or potential diagnosis can look at them to get some ideas and reassurance.

The group from the other side of the room!

We’ve also got a Poster at Dementia Congress in November. So discussion followed about the design and content. Consensus was around simple and bright.

Keith then filled us in on his appearance at the UN Nations around Human Rights, Disability and Living with Dementia. Still an amazing accomplishment.

Donna gave a brief update from Racheal Litherland on their PIP campaign.

There were various updates from around the table. Peter had been looking at how to encourage GPs to use the GP diagnostic tool we’ve produced. CQC will ask inspectors to see if our GP guide is being used in surgeries – nice one! There is also the chance to do a webinair of the tool as well!

All the workstreams gave updates Research network, Diagnostic and Post Diagnostic support, etc but brain was on shut down and I was very tired so must have stopped typing.

It’s been a particularly tiring week this week, even though it’s only Wednesday so hopefully tomorrow my calendar says I can potter in the garden …or just sit……….

I had forgotten how much I hate travelling in the dark………😳🙈


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😊