Category Archives: Debate

My first appearance before an Ethics board…….

So Friday was Friday 13th …….. would it be an unlucky day for our project looking for ethics approval?

I’ve never seen what goes on at an ethics board meeting before. So many researchers fear them and they often seem to over protect or underestimate people with dementia, so I was expecting an interesting experience…….research studies have to receive ethics approval to make sure those taking part are safe.

It had started off a sunny day but the grey skies soon descended and fitted my mood for the day….no matter what you thought of the result of the election, we mustn’t let it divide the country. People made their mind up for whatever reason they thought best & now we have to stop all the divisions and hatred that exists. Sadly I can’t feel anger anymore or I’d be ranting and raging, all I can do is let my eyes leak ‘til they’re empty……and so I was glad I had something to fill the space on Friday, but knew that if the panel upset me, I’d just cry and that might or might not work in my favour! 🙄

The taxi driver was a smiley soul but we trundled to the station in silence, conversation all spent for the day. The first train to Hull was on time and I got my cuppa tea before the train to Leeds, which was delayed of course…..

The sky was undecided as we trundle past the Humber…

The train was crowed with festive fun as people with suitcases struggled to find a spot for them to rest and groups raucously brought out clinks of booze and food for the journey …..and exchanged terrible jokes 🙈 as this was a lunch time trundle so very different passengers travelling alongside ….the volume of noise too much for me to decipher punchlines or conversations so I looked out of the window and went into my own world instead…..the peaking sun hiding the torrential rain falling in the distance

We were meeting the committee in the Queens Hotel, next to the station in Leeds and Mark Wilberforce and Louise Newbould, from York Uni we’re meeting me there for lunch ahead of the time so we could talk tactics 🙄. Their project is called HOPES – Helping older people to engage with social care….it’s looking at people with dementia but also people with mental health needs….it’s a really big issue that we don’t address at the mo.

NHS committees are used to to medical trials and medical trials can cause a lot of harm so they tend to be cautious but they are getting used to more qualitative social research than previously. They used to medical researchers ‘Doing’ things to people, so now they’re having to understand risk in a different way. Ethics committees are all about interpreting harm very widely so e.g in our sort of project over probing questions, or overlong interviews……

Ethics committees are volunteers so only get expenses which surprised me hugely….the fact that there’s 3 of us turned up shows we’re keen on ethics…..I promised Mark, I would be polite and wouldn’t mention the fact that I just wanted to see what they were up to 🤣😂

It was mine and Louises first ethics committee….Louise very nervous, me very excited 🤣

In the first part of our study we want to talk to people with dementia and those with a mental illness who were having trouble with care visits into the home and accepting they need help and the reasons why they might refuse help. So having trouble receiving it and accepting it…. Sometimes Home Care staff will dismiss people who reject home help due to the circumstances at the time – it’s easier to move onto the next person, such is the restraints on their time. They may be rushed, the care staff may not know how to interact or how to cope with the situation…..how can we train staff better to understand how to perform Home Care?.

The biggest thing I learnt was we can’t control the venue where ethics decide to hold the meetings. The Queens hotel was a real challenge for me with crazy flooring once more, mirrored lifts and little signage so our able enablers really need to help us with those difficulties. I should have taken piccies to show but I was concentrating on getting from A to B 😳. There was also noise coming from every direction, with Christmas parties and people walking past so hard not to get distracted…

After lunch we headed up to sit outside the Headmasters office (that’s really what it felt like 😂)and just wait to be called……Mark and Louise were nervous, but then all researchers are nervous of ethics, especially NHS ethics…..Mark whipped a tie out to look the part……the research is their baby and timelines are tight, so ethics delays can make or break their project.

We chatted to the 2 chappies also waiting but thankfully their appointment was for 3pm and ours 2.30. They were researching medication in children’s hospitals and the processes…….and were from Manchester ……so had a longer journey than us………it was nice chatting to different researchers in a different field  and it turned out Louise knew one of them as her and Mark had both worked at Manchester …..small world syndrome……

The committe were running very late but a very smiley friendly room greeted us.

I asked at the beginning if they would mind if I typed……and explained why, with the help of Mark.

We introduced ourselves. There were loads of them, probably 10 or 12, which surprised me and the room felt very cramped and full – good job they had smiley faces. One of them was the Chair and another one was in charge of asking us questions.

They started by saying  how they loved our application, how they were please I’d attended and that Mark and Louise had involved me, Maria Helena, who also has later dementia and her husband David.

They asked me the first question 😱about the length of the questionnaire, which took me by surprise as I wasn’t expecting any questions to be directed at me, but that was a nice surprise.……our  questionaire is due to take an hour. They asked if this was too long for people with dementia. I said how flexibility will be key, how each individual is different; how the individuals capacity and the type of day we’re having would influence the process.  I turned to Mark, hoping that was the right answer, as I think them asking me took us all by surprise!!

They involved me in the questioning so much which surprised me hugely. But it meant I had to stop typing to concentrate in case they snuck another one in 🙄😳…..we were finished in record time apparently as they only had 3 or 4 questions and it meant that Mark, at the end, told me to mention Dementia Enquirers 😇….and how people with dementia could well be in the hot seat up and down the country and I would feed back about their smiley faces…….

We were all very happy and very pleased when we came out. It was a happy end to the week but then, needless to say, it went downhill as I entered Leeds station…..my train was delayed and then in the blink of an eye, it was cancelled 🙈……we were told to go to Selby and wait for a connection there. The train we were sent to had just 2 carriages and was one of the oldest trains on the planet and was rammed like sardines when I got there. I squeezed on and a smiley face allowed me to have his seat. More sardines arrived and just squashed onto the train even more.

Once we got to Selby, there were more delays, another sardine train arrived and we joined the squash on that one. Another smiley face gave up their seat for me, so very grateful for those people. A Twitter pal posted this on Twitter to me…very apt with the travel trauma I’ve had lately…

I finally arrived home, very tired after a roller coaster of emotions day………tomorrow’s another day and me thinks a chilled weekend is in order………but a great introduction to the world of ethics committees …..

 

 

Final trundle of last week was to Luton…….

After the wonderfully different conference with the lovely dentists last Thursday, I left them at lunchtime to head for Luton for the final conference of the week. This time I was speaking at the Luton and Bedfordshire Memory Services Conference…….

I’d had to get everything ready for this week a fortnight ago so I was just hoping against hope that everything was in my pink file. I can only concentrate on one event at a time so couldn’t look at the paperwork until I’d actually got to Luton. If I’d have looked at that before finishing the Dentists event I would have got the 2 confused so times, venues and instructions would have merged into one and I’d have got in a pickle…….

My first mistake was at St Pancras station in London. I was booked on a direct train to Luton, no stops. But the way the man sent me, took me to trains that all had stops on the way. It was even a different train company than I was expecting. So I missed my booked train and simply got on the next one that arrived. Thinking about it afterwards, me thinks I should have gone to the upstairs platforms…..but hey ho….I got there….

My hotel was only 5 minutes from the station, but you have to start walking in the right direction for that to be the case. I don’t think I’ve ever been to Luton, so it was totally unfamiliar but my app got me there eventually……I just had to keep turning round as left and rights were getting in a pickle 🙄…..

It was a strange hotel…….no tea making facilities in the bedroom😳😱…..unlimited drinks but you had to go downstairs every time tou wanted one 🙈 but the staff were nice and helpful, especially when I lost my key card within minutes of entering my room 🤐…never did find it….the key was white, the linen was white and I just couldn’t see it 🙄

Aneeba had emailed me the night before with her mobile number and to check I was ok which was good.

The following morning I had a sore face 🙈…I remember something happened in the night and I’d become disorientated and think I must have walked into a wall or door or something – I just remember it hurt! So I had to send my daughters a black eye alert once more just to warn them 🤐🥴

I ambled the short way to ‘The Hat Factory’, our venue for the day……my app thankfully sent me in the right direction and they were busy setting up…so I sat quietly in my own world typing away. A Gp came up to me and asked me to sign his copy of my book – always satisfying when Gp’s have my book……

It was a strange room where we had the stands and tea as the walls were black curtains so very disconcerting….but Reinhard and Jacqueline Hussey soon joined me for a hug and distracted me…..

I had to take Reinhard’s arm to get me through to the lecture theatre as the floor was horrendous and I had to look up to the ceiling….


Who on earth thought this was a good idea for a floor….🙈

The lecture theatre was also very black so sadly it wasn’t very good for me……..

Aneeba started off the day with general housekeeping

Dr Sen Kallumpuran gave an update on the county services….and used the same sort of slides as Alistair Burns around Diagnosising well, living well and Dying well……which I’ve wanted changed for a few years now…..they trip off the tongue nicely, I just don’t like the phrases…..they were fine when there was nothing else but I think they need an up date now.

Dr Vaness Raymont then gave a talk on prevention in dementia – and the role of research.

24.6 million people in the UK have a family member of friend living with dementia. She said:

We have an increasing problem but we really havnt shifted at all in clinical practise” and

In the clinic we are focusing on diagnosis dementia but maybe we should focus on Alzheimer’s disease that occurs before Alzheimers dementia appears.”

The public often don’t think there is anything they can do to prevent dementia in the same way as they can with heart disease. But there are many changes they can make to reduce the risk. Me thinks this is true but also, if dementia decides it’s going to get you it will but by doing everything right, you’re giving yourself the best chance….

There has been no new medication since 2005.

She believes we’re tackling dementia too late, we should be starting before the clinical changes exist. To do this we have to have a better understanding of this disease. Clinicians and the public have to come to terms with the fact that this disease can be delayed or the risk reduced. So that would mean changing the culture which is not easy.

The ideal would be to start creating personalised prevention plans…..

I think this is where the biggest breakthroughs will be, as well as in imaging and the work of Nick Fox, me thinks the preventing and identifying risk before it exists is where we should be going…whilst not saying to the public if you do XX then you won’t get dementia as this is giving false hope and will cause bigger issues

The slides were rubbish and too many but the words she spoke were good………..why show slides where you feel the need to say, “ I’ll explain this as it looks very complicated’…..🙈🤷‍♀️ and “this is an old slide so it’s out of date’😳🥴

There was a good slide at the end for how all this work will impact on clinical practise, especially changing ‘memory clinic’ to ‘Brain Health clinic” but It felt a very medicalised view…..

Dr Jaqueline Hussey was up next, and me and Jacqui are both on the Young Dementia Steering group network…….she was there to speak about her work with Young people with Dementia in Berkshire……

Because numbers of us are relatively small, so commisioners often think there’s no point providing services but numbers may be small but our need is huge.

Gp’s often don’t record Young Onset so numbers really are guesswork……many people under 65 don’t want to go to ‘memory clinic’ or ‘old age psychiatrists…..Jacqui asked how many neurologists were in the room and there were none. We need to work together and neurologists should be here.

Age appropriate services are often non existent and run at the wrong time. So there’s a high unmet need. There’s little appropriate residential services and current ones that do often can’t cope with a younger age group.

Berkshire has now appointed their first Admiral nurse for Young onset dementia…..they set up the charity in 2012 (Young people with dementia in Berkshire ) to provide meaningful activity for those with young onset.

They wanted, in a world where there is little choice for people with dementia,  people to have choice. So they publish a prospectus every 6 months with various workshops they can attend….people are referred to the charity at point of diagnosis.

The variety of workshops was impressive from wall climbing, choirs, photography, to kata canoeing, running and cycling…..and many more…..

Wonderful work going on in Berkshire, they’re very lucky…..

Me next and once again I spoke about this that and everything, but because of the audience spoke about language more…….including the alternative delivery of diagnosis of ‘There’s nothing I can do”  to :

Yes, the diagnosis is that of Young onset dementia and not something anything would wish to have. But think of it as the start of a different way of living; a way of adapting. I might not be able to do anything for you but there is still so much you CAN do, albeit differently and with support.”

Reinhard, a Consultant clinical psychologist was after me and before lunch

‘Fear’ is what we see when you google dementia – the fear of getting it, the economic fear, the images fear etc…

He spoke of the fear imagery fuelling the stigma associated with dementia…..

He also spoke of getting to know the person and those around them to know who are the glass half empty people who will need more support and those with glass half full who will willingly accept strategies.

He spoke of the various tests they do or can do and knowing the best level of testing appropriate for each in individual…..it’s important to challenge the current processes and ask what the person would prefer – e.g. would the person prefer a Carer to be present during testing etc, there’s no one size fits all.

People need TIME when delivering information….professionals shouldn’t have to pack everything into the diagnosis process, all the information about signposting and packs of papers should be for another time and not simply because it’s part of the tick box process……we can’t process so much ‘stuff’ being thrown at us all at once. Nice one Reinhard….

It was also lovely of Reinhard to promote Dementia Diaries and the DEEP Network, showing slides of me and many of my playmates….

I spent the lunchtime selling my books and chatting to lovely people, One man, who works at the Memory Clinic,  came up to thank me and said:

“I feel like I’ve had a bucket of cold water thrown over me” such was the wake up call I’d given him…….☺️

Another interesting morning but, again, I had to leave at the end of lunch in order to get back down to London to get my train home at a decent hour but another worthwhile trundle to end the week…..

 

 

A Monday morning trundle to Durham……..

Yesterday saw me heading to Durham for a meeting with a project I seem to have been involved in for years……

After my wonderful weekend in paradise, all I wanted to do was stay snug…..and all I wanted to do was hibernate for the week, but luckily I have a full 2 weeks ahead. Luckily because, although sitting doing nothing is wonderful with dementia in tow, it’s also very bad…..

‘Doing’ is so important. Travelling all over the country, I call my Suduko, as it keeps my brain exposed to different environments and different conversations, but it is exhausting and at the end of each day I describe myself like a Duracell bunny whose batteries have run out…..

I hate it when I see people just sitting in care homes…..doing nothing……believe me, there’s nothing more comforting than sat doing nothing with dementia…sat with your eyes closed with no stimulation is HEAVEN…no stimulation to distract or test the brain cells….just silence and calm in the head…..but I’m lucky enough to know how bad that is for me. Because if I sit for too long I can feel dementia start to seep into my brain and my body and it hugs you and you feel suddenly safe in its grasp. That’s why so many people with dementia want to just sit. But that’s dementia cruel way of giving you that false sense of security that doing nothing is good when the exact opposite is the truth….keeping your brain and body active is my way of keeping dementia at not and not letting it win…

Anyway, back to yesterday….it was a freezing sunny morning and I noticed the familiar taxi arrive early and park up to wait for me. I’d actually got everything ready the week before. I’d typed all my talks for the run up to Christmas the weekend before and I’m so glad I did. I was on a roll a week ago typing, whereas I felt empty of words this weekend.

We trundled towards Beverley, passing the sunlit Westwood….

The trains started off delayed….and the information boards had decided it was too cold to work, so no one knew what was going on…but they suddenly sprang to life telling us of the short delay…luckily I had a long wait in Doncaster so no panic necessary…….the train had not got the memo to clean the windows so no piccie of the sunlit Humber this morning 🙄

I’m part of the Advisory Group for a Durham project called “Co-Designing Dementia Care’

My friend from Bradford, Prof Jan Oyebode is part of the actual research group along with other lovely people. Richard from NHS North of England Commisioning support always books my tickets for me and looks after me well.

I had a long wait in Doncaster so took a trundle inside shopping centre and saw this perfect sign…

The train to Durham was also delayed but only by a few minutes. It seemed to be rammed with Christmas shoppers and a group were in my seat 🙈…..I ambled up and down looking for another window seat as I knew many would be getting off in York……and I found one…

I arrived in Durham to find Jan and Chiara waiting and we were joined by Nick and Barbara, and it turned out we’d all been on the same train! …..we all piled into the taxi and trundled towards the John Snow House, passing these lovely Christmassy reindeer languishing in the middle of the roundabout…

We arrived to find the rest of the people waiting including Mariri who had flown in from Switzerland! There was a mix of people, local Director of nursing, commissioner and researchers…..the mix of people is one thing I like about this project.

We started off by discussing the proposal of an Out of Hours care improvement pilot. They want to prevent avoidable admissions to hospital via community care. The pilot will take place in the North West of Durham. They worked out that around £4600 will be saved per admission. Although Nick cautioned against the use of the word ‘saving’…..for me…. More importantly people with dementia remain in their own home.

The pilot will also be exploring the ‘real need’ that exists in the middle of the night.

They would employ 3 healthcare assistants and I asked what extra training they would receive? The Director of Nursing said how there’s a potential for the Admiral nurses to play a support role here.

By only avoiding 8 admissions, this would pay for the intervention so any more would be a bonus.

The next steps are taking it to the CCG (commissioners) to hear their thoughts…….

The next item was linked to the first and it was around Emergency Healthcare Plans.

They are documents to help communication in an emergency for the individual to ensure timely access to the right treatment and access……..

So they’ve done an audit of 50 plans to see if they’re completed correctly and then whether they actually work in practice….Gary Fry performed some interviews with a range of people including medics and carers . Most of the forms had been completed on transition to care homes……..and had generally been thoroughly completed.

Like every bit of paperwork stating our needs and wants…..they can often be cast aside and ignored or forgotten…..😔

We then went backwards on the agenda to Chiara on Project 1 intervention. A recognition of unmet need of information (usually of local services) for people with dementia and their supporters.

A working group suggested a check list, one that isn’t necessarily accessed but it needs to exist. From June this year, CPN’s (Community Psychiatric Nurses) have been handing out this leaflet. Ethics were then asked if they could interview people asking what they thought about the leaflet and they’ve only just got ethics approval so can now start interviewing people.

So the next step is to start evaluating the use of the leaflet….I said they should ask if people found anything new from the leaflet. They might have known something existed and the leaflet provided the contact details, but did they find anything new they didn’t know about. And I also mentioned the lack of financial support detail e.g. council tax. Goes back to my saying of ‘We don’t know what we don’t know”

But as Richard said, small comments like that can lead to the leaflet being updated regularly as it’s a living document.

Area 3 was next up after a short break……”The Dementia Reminder System”……….

At the workshop, supporters said how they were inundated with information at point of diagnosis. So they decided how a ‘reminder’ would appear every 6 months. The Gp practice will pull a list every 6 months of those patients with a dementia diagnosis and a letter and leaflet will be sent to each person.

The researchers will ask the practice managers if this happens and whether there were any issues. The local ethics committee has refused the researchers access to the people direct. So the researchers have to rely on the people contacting them, which isn’t good, but is out of the hands of the researchers – they have no control over anything.

I suggested adding a smiley photo to the covering letter…..

Dissemination……This has been a project which has lasted 5 years…..the whole point of this project was to work with stakeholders (Commisioners) to provide better dementia care. Jan was asking where we needed to diseminate…..locally they could hold a workshop with all stakeholders who have been involved, which could bring together the people with the dementia, carers along with commissioners and Healthcare staff.

It may have been 5 years since all this Action Research  started but this is an amazingly long time in Commisioner world but researchers always find different things happen along the way that change the aims and directions…..for example it was originally ‘Co-design’ in the title but it’s actually been ‘Co-creation’…..co-creation of knowledge design………

It’s enabled us to “Learn what we think is not what people want” said the Director of Nursing…..a nice way to end……..as my brain was shutting down …..

I do love Durham and can’t believe I didn’t take piccies of the actual meeting 🙈 only outside…

P.s….we got to the station to find rail chaos……but the chaos that followed and trundles in taxis and coaches deserves a blog all of it own tomorrow………🙈

“ People in the advanced stages don’t know they have dementia”…..

“People in the advanced stages don’t know they have dementia” – A blanket statement made last week by Professor Graham Stokes at the UK Dementia Congress……..

I remember taking a large intake of breathe as I was shocked at this random statement…..

Does it matter that people aren’t aware? Probably not in the grand scheme of things, but is it respectful to assume that? Me thinks not.

If people hadn’t been told, were in denial, didn’t understand before the advanced stages, I wouldn’t be surprised if it were the same for them in the late stages.

But isn’t it assuming that people in the late stages have lost all intellect? If so, how do we know that? What proof is there? How on earth could you prove such a concept?

When I saw Prof Stokes, I felt that I’d disagreed with his comments previously ….I seem to intuitively know if someone has upset me before…so I trawled through my blogs…there was my answer……

I’d attended a conference back in 2015 where the titles of many talks was around “Challenging behaviour”. He was one of the speakers. I hadn’t disagreed with everything he’d said but that emotion had obviously lingered…..I’d changed my talk that day to reverse their theory and spoke of ‘Challenging staff’……it was early days in my ‘speaking out’ and I imagine I would have been more vocal if it had been now…….

Anyway back to the current debate….some people don’t wish to acknowledge a diagnosis of dementia, which is their choice. Others simply don’t recognise the diagnosis in themselves. However, for a blanket statement to be made by a well known professor in the dementia world, without any hint of proof seems a tad ignorant to me….

After all, at what point are we considered to be in the ‘Advanced Stages’? 🤔

Some Care Home staff have said to me that some of their residents are aware. I’d be interested to know your views, especially if you care for someone in the advanced stages……

Only time will tell if people like me, who openly accept the diagnosis now, will know and acknowledge dementia in some way in the late stages, but hopefully I’ll be dead before I reach that point…

Wednesday at UK Dementia Congress……

After a sleep wake sleep wake night, I finally fell asleep as my alarm went off at 6🙄…..it was an e x h a u s t I n g few hours yesterday at Congress so goodness knows what I was going to make of a whole day…..my head had been partying all night and all I really wanted to do was snuggle, but loads on the agenda today……it was a lovely cold crisp autumn morning as I walked from the annexe …

It started off with an early breakfast………Rachel, Dory and Agnes were already there and Aimee joined us, having arrived at midnight!😳…….we made our way to the racecourse and set ourselves up behind the DEEP stall

Lots of people came for hugs and hellos …….and then it was time to go into the main hall and set up for the plenary…..we redesigned the stage 😂 as we wanted to sit in a chat circle instead of behind tables, but the sound man happily moved the main tables, brought 3 chairs and gave us hand mikes……..

After the initial introductions it was our turn. Jeremy Hughes was caught up in rail delays so Prof Dawn Brookner stepped in to introduce the 3 of us….and be chair for the plenary session……..

We spoke about ‘Technology and how it can benefit us in the rights hands, however………’

Agnes played Michael Parkinson and chatted to me and Ron, about 3 important points……Alexa, social media and companies involving us from the start when developing products for us……

Ron said on Alexa, “Alexa ASKS me if I taken medication, she doesn’t tell me”

It went well………and Agnes ended by saying

We don’t have all the answers, but we all agree the best hands to control technology are our hands”

Next up was 2 people from the TIDE carers network……..they spoke of the importance of connections. The power of meeting others in a similar situation ……needed by us all and sooo important me thinks…..

I’ve always said supporters and people living with dementia live parallel lives, rarely meeting but our individual needs are equally important……

The final speaker, lost me, he spoke too fast for my slowing brain………he too spoke of technology to monitor health care and general well being –Which  highlights the deviations from that persons normal behaviour……..…… I went to the loo, had a wander, as I was looking for my friend Prof Pat Sikes who was sneaking in for a hug……. and was told by the organisers not to disappear too far…………

Because…….at the end of the plenary I was given an award…Jeremy Hughes had finally arrived after train delays and he presented me with the award….but I asked if I could say a few words,,,,,asked all my playmates in the audience to stand up and dedicated my award to them as they’re ALL exceptional in my eyes…..

It was very humbling being surrounded by people wanting to give me hugs and congratulations but I then had the lovely surprise of Prof Pat bringing someone to meet me – her Thom!!! All the way from Canada! ❤️….

So many hugs, so many hellos afterwards….but I had to whisk my way to the next session which was Minds and Voices running a group upstairs……we knew not many people would come, but we also knew that we simply were pleased to be altogether ….

I’d made new badges for everyone from the badges kindly donated by WH Smith’s Trust……..

We started by sitting in a circle with all our visitors and going round the circle saying who we were………

We then went onto a conversation about relationships…….about the various thoughts on the words ‘Carer’……..how ‘carer’ implies a one way contract when it should be a two way process as any partnership……someone said how sometimes we have to put a different coat on and accept that society demands we have a label……but Rachel said:

if we continue to secumb to ‘what society demands’ we will never change the labels it gives us…….”

Chris said…….“We’re all carers’ and care for people, caring for our fellow humans…….”

We went onto new members and how daunting it can be to join a group……I told the story of playmate Elaine, who joined and didn’t speak for months and then suddenly during a discussion on what we should name ourselves, and Elaine spoke her first words, `”Minds and Voices”……and now we can’t shut her up 😂🤣😂

She said…….“Minds and Voices brought my life back…”

I went from feeling useless to useful”…..said Chris……….

That’s the power of peer support……..❤️

It went so well and now time for lunch ………..I was exhausted, as were so many other playmates…..so I simply sat at the DEEP stand and chatted to people who came up to chat…..

Philly managed to drive here in the end, even with her dodgy back…and we all sat amicably but exhausted….

I decided I wouldn’t go to the evening meal as I’d eaten at lunchtime so had had my fuel for the day……so Philly drove me back to the hotel around 5ish for me to hibernate for the evening…….

Another wonderful day meeting lots of wonderful people and lots of Twitter pals….but now needed to recharge for the final day…….

This year UK Dementia Congress is ‘up north’…..

So yesterday saw the start of the annual 3 day UK Dementia Congress. I didn’t go last year as it was in Brighton I think 🤔 but this year is in Doncaster so a 90 minute trundle away…..

Because it was on home ground, DEEP had asked me to do 2 things…….the Plenary talk with playmates Agnes Houston and Ron Coleman at 09.40 on the Wednesday, and a workshop around Dementia Enquirers with Ron and Howard on Thursday at 09.10. The other bonus was that me and my playmates at Minds and Voices, had also been given a slot to enable anyone to watch us have a peer support session at 12 on Wednesday. It will be a wonderful experience for all my playmates to be there……but I know some aren’t well at the mo….

Sooo many other sessions are being held over the 2 main days with people with dementia included…..bonus….just hope I get to see some 🙄

The day was grey with a heavy mizzle…..I’d got a last minute txt from Rachel to say Damian was meeting me at Doncaster railway, along with Agnes and Dory…….before heading to the hotel for time to adjust and then onto the evening sessions at the racecourse……

The train windows windows were murky as was the Humber as we trundled our way alongside…and stayed murky all the way with flooded fields one minute and trees displaying their golden autumn colours the next and the windmills looking sad in the grey skies…..

I arrived at Doncaster, to find Damian waiting as planned, soon to be followed by Agnes who had caught an earlier train and found a nice guard to help her…..last to arrive was Dory before w wall trooped to the hotel…and who should be in the taxi queue but Rheinard, Keith and Rosemary! AND then Steve and Ron were in reception at the hotel….playmates galore….

There was a change of plan and it had been decided that we’d all head off to the conference venue once we’d settled in our rooms. Mine was on the ground floor of the annexe an, looking out of the window, it felt like I was in the middle of the busy roundabout 😳😂….so quickly closed the curtains and all was snug……

We went across to the racecourse and found Rachel having set up the DEEP stand already and met together to discuss our plan…

Sooooo much laughter and comments from Rachel like ‘as the bishop said to the actress……’….😂🤣😂

Rachel had been her usual super organised self and she had done amazing info sheets to keep us organised and so were knew what we were doing. We went up to the quiet room with the an evening view of the racecourse …

Me, Agnes and Ron were part of the plenary session……and we discussed the plan……and key points we wanted to make …..

We went back downstairs and one hug followed another as further playmates came into view….sooo many it would have been unfair to choose one photo…..wish we could all have got together and had one massive piccie……

Lots of people stopped simply saying hello….so nice…..

It was lovely to see all our DEEP banners on display outside the main hall

We headed into the main hall to listen to the opening debate of the conference

The title of the debate was:

Environmental lies in care homes play an important part in delivering person centred care”

For example – fake bus stops, fake scenes in care homes, which I have such a strong view about……..

We had a pre vote, which I whole heartedly voted ‘disagree’…….

Keith Oliver and Graham Stokes were against the statement and 2 women were for..

The ‘FOR’ people spoke first…..and she spoke about how we go through life lying…..lying to our children about Father Christmas, environmental lies of plastic grass……etc…

They said how environmental lies come in a wide ranging guise of untruths…….the pretend bus stop where buses never arrive,  the reality is that in care home there can be ‘environmental lies’ which benefit residents…..an inside garden that plays bird music….(I’d much prefer to be sat outside listening to real birds singing..🙄)……..but she proposed how some environmental lies can be beneficial when used in the right way….. a carer spoke about the perspective of her mum who had vascular dementia…..saying how environmental lies had created a calming environment for her mum ….

They had Not changed my mind…..

-Graham Stokes, against the statement,  spoke of when 2 realities clash – creating environmental lies through fake environments such as murals…which can confuse, and ‘increase the bafflement of dementia’

He spoke of seeing front doors where fake letter boxes are sealed up….(😢)

Respect and Dignity should be at the core ……so a fake window in a bathroom that shows a fake outside, is sooo bad, instead of simply curtains to respect dignity….

Keith, then spoke saying how if he goes in a Care Home, then he doesn’t want people to ‘lie through cheap fixes to replace person centred care…’

…..How ‘time related’ lies, 50’s and 60’s settings causes more confusion when living with a condition where time is already difficult to navigate…….

Once they’d finished there were then many questions and comments from the audience…….I asked:

which came first, the companies who make the money out of such environmental lies or care homes asking for these environmental lies to exist…..”

So the speakers summarised and post debate voting began…….I was surprised by the outcome…..the pre vote had a higher % of people in favour of ‘environmental lies’ than I’d imagine but more had moved towards seeing the negatives once the final vote was taken…

By this time I was super tired, and we still had to eat….I should really have gone straight back to my room but I couldn’t remember eating during the day, so went with everyone else…..a noisy affair, due to it being bonfire night,  and being verrrry busy but I was in the company of lovely playmates and able enablers…..……

And so to bed…….

 

The Sunflower Lanyard Debate…..

 Well the sunflower lanyard sparked debate on Twitter this week…..I love a good debate on Twitter with playmates especially as long as it doesn’t get personal…..so I’d thought I’d reflect on my experience and my thoughts on the debate……what I say may spark more controversy, more debate….but at least it will get people talking…..

Yes I’d love to live in a society where I don’t have to wear a lanyard to highlight I might need help , where everyone understood,  but we don’t, simple as that and we’re such a long way from that nirvana…..if it will ever exist.

If we don’t highlight in some way that we need help, how will people realise? Staff are often too busy to pick up subtle cues of confusion, of need, so at least a lanyard stares them in the face and might make them think – not all staff have ‘got it’ yet, as I’ve experienced, but those who do, have showed me nothing but kindness. When stressed on a journey, kindness is what I need to reduce the anxiety and if a lanyard provides that kindness, so be it.

Not everyone is strong, is confident, is verbally capable of stating their needs, their Rights……some people need that crutch to help them in their daily existence. Something visible for others to see. If you’re not one of these people simply don’t wear it…..and that’s fine too…

Not everyone needs to wear it. Some people feel empowered not wearing it….both totally fine…

I travel this country extensively, on my own, trying to remain independent ..but it doesn’t come without immense challenges…..i rely heavily on the k8ndness of strangers. if a simple lanyard can help me then I’m glad I’ve found them.

The lanyard doesn’t diminish the Rights we have. The lanyard doesn’t highlight we have dementia, so we’re not labelling ourselves as such. It’s for ANY hidden disability, and that’s why I like them. It simply highlights the fact we’d like your help and understanding and might need some extra help.

We mustn’t create a two tier system within people with dementia themselves , how sad that would  be….it exists already in the form of some groups have louder voices –  , the poor, the black & ethnic minorities, the travelling community, LGBT, and soooo many others being far quieter …but we’re desparately trying to rebalance in so many areas.

Not everyone wants to go public, wants to speak, has the confidence, they have no desire to speak out…and that’s fine, that’s their choice ………but we shouldn’t make people feel bad for wearing a lanyard, if it  makes them feel safe, feel able to travel, feel able to go out into their own community, surely that’s a positive….?

As a playmate said on Twitter, ‘its an education tool. It can start conversations’….that for me is the bonus. Of course I’m a person before the dementia, but sadly it follows me everywhere, clinging to me like the proverbial limpet all the time, so I’m more than happy to say, ‘I have dementia, can you help me?’…I’ve often found that elicits questions, starts a conversation……..

It’s certainly started an interesting conversation on social media.

One person questioned whether the wearing of the lanyard might make us vulnerable to those that might take advantage of us….but we’re not highlighting the fact that we have dementia, we’re highlighting that we have an invisible disability, so for me the advantages outweigh the down sides. And in life in general, those of us living with dementia expose ourselves daily to those who can take advantage of us, especially those of us who speak out.

 I sometimes can’t think quick enough to say I need help, I sometimes don’t realise quick enough that I need help so the lanyard is hopefully a visible clue to staff.

 What would make me very sad is to see people with dementia creating 2 camps, one criticising the other for wearing or not wearing ……we have enough to cope within society, we don’t need that criticism amongst playmates as well.

I’d like to think we would all respect each other views, each other’s preferences, after all that’s just what they are, our views. Yes its all about choice….and I’ve chosen to wear it and promote it, because in my humble opinion, it will make a difference to many…..

 

The Power of Working Together….

A long blog, mainly for me as I found it all so fascinating and wanted to remember as much as possible…….

 After the eventful, but also beautiful arrival in Edinburgh on Sunday

…Monday morning arrived.

Linn Sandberg, a Swedish researcher, along with Richard Ward from Sterling Uni had been planning everything and the workshop is funded by a grant from a Swedish funding agency. They’d arranged for anyone who wanted to, to meet in the foyer of the hotel, to walk to the venue together – always a good move….

So after breakfast I headed downstairs to find others waiting for the trundle up the hill with Linn…..it was a beautiful morning and who should jump out of the taxi once we arrived but Agnes….perfect timing and I was able to give Agnes the lanyard I’d picked up for her

After a cuppa and catch up we made our way up to the room and Richard Ward started us off……

The audience was made up of phd students, lecturers, research associates, sociologists, social worker, literature student  and researchers from Sweden, Amsterdam and Russia…..WOW!

All hear to be involved and learn about post colonial representation of age and ageing approach to dementia……

Richard started off, saying he and Linn were given a small pot of money to kick start the network. They held a workshop and have since tried to establish an on line presence – the link being at the bottom of this blog…..

From a dementia point of view dementia, there’s an emergence  of a new generation of activists amongst people with dementia, supporting each other but also questioning the the political status quo. So we’re here to talk about how researchers and people with dementia can come together and support activism.  Richard meantioned how the people present often felt as though they didn’t quite belong at many Alzheimers conferences because of their emphasis and viewpoint and hoped this network would provide them with a ‘home’.

It won’t be a meaningful network unless people with dementia feel it’s relevant. It provides excitement for research and funding.

He also said how activism and networks of people with dementia are also responsible to ensure they’re multicultural, they they don’t discriminate – a very good point! We can’t say we’re discriminated against if we discriminate ourselves….

Life Changes Trust, here in Scotland, are instigating a school of Activism for people with dementia and a forum for policy and practice for people with dementia.

Linn spoke next and gave a brief background re the last workshop….

The drive has been to engage with critical movements, feminist , activists, and bringing out conversations in many arenas who have similar parallels…neuro diversity….many different neurological problems have similar issues.

Critically interrogating concepts of citizenship and personhood. What are we not talking about in Dementia studies – what’s being put aside?

We had a great discussion about learning disabilities, autism and disablilty movement…..and how dementia fits, or doesn’t fit into these movements…….

Andrea spoke of the fact there are still so many people that we’re not hearing from – those living in poverty, those with mental health issues and dementia, and other diverse groups…….and we have to respect that some don’t want to speak out said Agnes. For some groups, conversations happen over a cuppa tea….and these conversations are often more meaningful than at formal meetings…….

After a break next up was phd students giving a update on their project……each had 7 Minutes

The first student spoke of death and dying at the margins – her study is in Amsterdam but also in a rural area in south Netherlands.– she found some welcoming the end of life and how some wanted to hasten death

Euthanasia – people were very willing to talk about euthanasia. Me and Agnes spoke about the medical world making decisions for us. It’s almost a moral dilemma because we have to make that decision while we’re able.

They kept mentioning, ‘Queer Studies’ which I’d not heard of before and sounded offensive,  but it simply means sexual diversity studies……

Next up was the student from Russia – Nursing homes are the most stigmatised place for ageing in Russia. She is in the first year – and is working in various nursing homes in various regions. There’s a larger geriatric movement now developing in Russia and are being trained to introduce western ideas

. It’s still in the early stages and in a chaotic state especially when talking about dementia.

In Russia it’s sounds like the culture in Italy as families are reluctant to allow their loved outside to be involved in anything due to shame.

Last year the official numbers said there are only 800,000 people in Russia diagnosed but if the stigma is such, then it’s not surprising…..relatives don’t take their relatives to the doctor for diagnosis as they believe it’s a natural part of ageing.

The third was Emily, an English Literature student from Leeds. Her study was on Post colonial representation of ageing in film and literature written in the English language. …..challenging and romatiscing the concept of ageing. She looked at  gendered and racialised structure of care in the Caribbean ……and in New Zealand. Dementia is one chapter in her thesis and is just starting it. There was a discussion of the meaning of post colonialism…

Older people and people with dementia  are ‘othered’ in post colonial studies……is this good or simply creating another label?

She spoke of the bi health system that exists in New Zealand – one fro white settlers and the other the Maori Health system – soooooo fascinating……..

Next up was a second year student, Mah, from the Arts and Craft background….…….hers is a qualitative psychology study to investigate the loop experience of daughters looking after mothers with dementia……..she filmed mothers and daughters doing an activity together……including her own mother and herself…..and she showed us part of her film of her mother and herself sewing and chatting together…..she then did semi structure interviews as well as filming the activity….they then interviewed the daughter and they watched the video together and asked if they noticed anything striking or something they hadn’t noticed before. They often slipped into the carers role and forget, that the mum can be the teacher again through crafting…..it’s all about the relationship between mother and daughter and allowing a crafting activity to establish previous roles………again so difficult to find participants…

Mary next,from Scotland.  finishing her second year, her background is social work. She found those from black and ethnic minorities communities were finding it hard to find care in the care system.

So she’s exploring the black and minority communities accessing direct payment system.  They have been marginalised and oppressed when trying to access services. There’s a lot of research being done on the basics which is why she chose to research the Direct Payment system.

She also is interviewing social working involved in direct payment, carers who might believe need is one thing and people with dementia who might see their need as something different.

Mary is having real trouble finding people in Scotland from black and minority communities. Me and Agnes both said how this should form an important part of her findings..

James, our final student……his background, always had dementia in the family so his phd was based in the Midlands…..but again found trouble recruiting. He asked them who they considered the most important person in their lives. Academically he’s a Psychologist. He found that typically one person became the main carer. So he was interested in why, in a large family, does one person become the ‘carer’……he was interested in unpacking the family dynamics and peoples responses and tensions within the family. Many tensions were fuelled by the lack of services available to access. In almost all cases diagnosis was sought by the carer rather than the person with dementia and sometimes against their wishes.

What a diverse and fascinating range of phd studies……

After lunch we heard from Eman from the Central Scotland equality council. The charity recently decided to take on dementia as one of the countries very unrepresented conditions. They champion rights for people with dementia and carers but found it very difficult with barriers at every corner. “We don’t have people with dementia in our community”………

They questioned stake holders and asked if they’d thought of considering redesigning their services…….needless to say they hadn’t but at least they’re trying to bridge the gap. The direct approach didn’t work in finding people with dementia because people have a negative idea about services. A one size fits all service does not work with dementia……other people think they know best about individual needs…..for example they might think some people need an interpreter, but don’t think about the cultural sensitivity of that language……

Megan then spoke about an LGBT project being funded by Life Changes Trust…..my batteries were running low, and I havn’t done my bit yet…good job it’s all written down 🙄

Such a shame my fingers were losing the thread as it was another fascinating insight into dementia in the LGBT community….there was also bagpipes playing outside so my head was hearing everything and getting in a muddle…..🙈…. I glanced at Agnes and noticed her eyes closed as well, so I didn’t feel too bad…….

Agnes was up next …….so I forced myself to wake up a tad…….

saying how when she diagnosed there was no DEEP network, no dementia diaries, no Twitter and when you went to conferences it was all about the carers perspective  but over the time a group banded together and together gatecrashed events.😂 Behind the scene there was this movement developing, ……although we didn’t realise it at the time….she spoke of the emergence of Kate Swaffer and the Dementia Alliance Interational group being born….Agnes felt a lone voice and she found everyone talking about memory and her biggest challenge wasn’t memory but sensory challenges.

She spoke of us being ‘done to’…..but then the group of people with dementia started to talk behind closed doors about death, challenges and all things other people weren’t ready to hear.

People with dementia want partnership and to be treated as equal…….”

“It’s exciting times as people with dementia want to be in control of the lives and their death”

I then had to follow Agnes 😳…..and part of what I said was:

“In my humble opinion activism comes in all shapes and forms, taking on many guises, some outspoken in a public forum, some campaigning tirelessly,  others seeping into the very nature of people minds and thoughts to bring about change. All are a type of activism.”

We both spoke about the work we’re doing with with the Pioneers in Dementia Enquirers and It was then opened up for questions of which there were many including how we cope with professional criticism….with being taken advantage of by researchers and many more interesting ones……….

You can read this interesting and enlightening article by Linn Sandberg and Richard Ward from Sterling Uni here:

https://criticalgerontology.com/calling-for-a-more-critical-dementia-studies-criticaldementia-network/

And I just love the piccie that appears at the head of the article

Another Trundle…..more learning…..

So after a day of celebrations on Monday at Bradford Uni, yesterday found me trundling to York Uni to hear the findings of another study that was coming to an end. This one was of particular interest to me as it was about post diagnostic support in the form of a course – but a course designed and delivered by professionals……had it been a success?

The dully grey day of Monday had been transformed into the blue sunny skies of Tuesday….it was a slightly later start so I had time to catch my breathe before venturing out in the taxi at 09.40

They’d offered a car to drive me to York, but I do like my trundle on the bus and the bus costs me nothing so made sense. However, although York is only 20 miles away it’s a nuisance to travel back in time to get the last village bus, so their offer of a car back had been  gratefully accepted….

The taxi man checked with me that I didn’t want to go to the station 😂…..as this one had never taken me to the bus station before. The Westwood looked glorious in the sunshine but sadder for the absence of the town cows as I assume they’ve all gone to market now….im glad I don’t eat meat……🙈

Jessica, the Trial manager, was meeting me at the station and sharing a taxi to the uni. The blue skies of home had disappeared once I reached York, to be replaced by the a sad grey threatening rain…. There were also roadworks that brought us to a halt and I ended up being late and rushing through town …..but just enough time to snap a piccie of the flooded Ouse by my whirlpool bridge…(I mention the whirlpool in my book)

…arriving at the station puffed out but Jessica was waiting patiently….

The room started to fill up with familiar and unfamiliar faces, so we went round the table and  introduced ourselves as everyone involved in the study was here this time. I’m used to be part of the Trial Steering group, but all the different groups were there today…..

The first part of the meeting was all statistical data and graphs but Jessica or Zoe had gone through each page and written me a post it note explaining what each meant 👍⭐️

We went through the baseline characteristic data. There were 28 intervention groups. Half the participants received the Journey through dementia sessions and half didn’t – they simply carried on with their usual care….

After participants had attended the sessions they were then revisited after 8 months and 12 months.

Now obviously the data hasn’t been made public yet so I’m not allowed to type about the outcomes. I kept typing/deleting/typing/deleting 🤣 It’s embargoed until a December event….but it was fascinating listening to the statistical analysis and seeing what they measure and how…..me thinks they have to be a very special breed of person to be a statistician….🙄

We the went through the cost effectiveness analysis of Journey through Dementia intervention. So this was the health economists data…….looking at cost of training, cost of delivering the intervention etc…..The cost of the training – cost for trainers, admin costs, overall, staff receiving training….. ….again, fascinating seeing the potential cost of running such a course.

We next heard about the qualitative part of the study – for me the good bit as it’s more about what participants thought……  they selected 4 sites to carry out observations and interviews…..talking to people often gives more in depth information than the information gathered from forms…..this gains a more holistic view…

Once again, fascinating insights but not unsurprising to me, yet seemed to be to some of the group present….

The thoughts of the trainers were interested…..the expectations they had on participants and how they thought the delivery went….

Gail Mountain, Chief Investigator, is a huge advocate of co-production and a wonderful person in wanting to include people with dementia. I can’t wait to reveal the finding as I have much to say and many thoughts……

We all agreed that the current measuring of success for people with dementia needs a revisit. It’s no good asking people about the last month or the last week as we simply can’t remember…..so hopefully someone will design a new model more appropriate for people with dementia.

As I said, the findings are being published at an event in December. Participants will be invited as well as professionals. They also intend to send participants the findings as well and are working on the design of that – and yes, they will involve people with dementia in the design…….so

Watch this space!

At least the fluffy blue sky had returned as I trundled back home after another exhausting day trying to take in information…..

 

A celebration of success……..

After a weekend of nothingness following a chaotic week last week, I started off this mega busy week in Bradford yesterday …..very long blog but sooo much to say…….🙄

We were there to celebrate the incredible hard work of the last 3 years of Dr Sahdia Parveen and her amazingly, revealing and successful study of Caregiving Hope. This study was looking at how willing and prepared people are and obliged they feel to care for those closest to them when diagnosed with dementia……

Sahdia’s success has come about through her hard work, energy and being mega organised. We’ve been with her all the way as Alzheimers Society Research Network Monitors – Me, Sandra and Htay have been with Sahdia for the whole study so how wonderful to share the end event with her as well…..

Because I’d had such a busy week last week I was late sorting out stuff for this week. So Sunday morning I suddenly had a panic as the main admin people at Bradford had booked me the wrong train ticket. I’d asked for an ‘Anytime Short Journey’ ticket and they’d booked me an ‘Off Peak’…😳😳😳….. I needed to travel before off peak time. When Sahdia contacted them Sunday they implied the ticket would be fine – I knew it wouldn’t..and it wasn’t……so they cost Sahdia far more from her budget than they needed. That’s why I always like to book my own, but this time they insisted for some reason……🙈

Anyway, the day started off well with the most glorious 30 mins sunrise….

Both the taxi man and me were just mesmerised……

30 minutes of glorious heaven went out with the blink of an eye and turned to dull grey raininess before my eyes………for those that didn’t look out they missed a wondrous sight…

Sandra was meeting me at Bradford station and we txt each other updates on our respective journeys…..having met, we trundled up the steep hill to the Uni to find Sahdia had everything all ready!! She’d been up since 5am, such was her excitement for her big day…we were leading the workshops in the afternoon. My one was “Living with Dementia” and Prof Jan would help and transcribe for me……

Then suddenly……the fire alarm went off 😳🤯 ……..and I just panicked, as I do, not knowing what to do, where to go…….we saw people in orange jackets waving at us outside…..so decided we’d better leave the building 😂……it was a test but a timed test…..we failed miserably….

The lovely Ripaljeet joined us……followed by Htay….

The room began to fill up…….with carers, who’d been part of the project and professionals and some who had a dual role…… everyone had been asked if they minded their photos being taken and all agreed…..

Prof Jan started off the event….welcoming everyone and saying how the next stage is for our thinking today about what 3 interventions would make a difference for Carers……

She said she was the ‘warm up act’ 😂…….

Jan spoke about the Centre for applied studies in Dementia Studies…..they not only do research but work with Gp’s, Care Homes, Hospices and a whole range of other activities…..

Dementia is a family affair” – Jan said…..family members provide a huge part as opposed to services that in comparison offer little….

Tom Kitwood left an amazing legacy to Bradford ……..Tom’s theory was one of relationships……

Sahdia’s project has been funded by the Alzheimers Society and Siobhan was here today representing the society…..Sahdia thanked all of us who have worked with her on the project as studies don’t come about from one persons input…..

Amazingly ethics won’t allow her to name us to the audience 🙈……

Sahdia has been a carer herself and health professionals often assume that carers are willing and prepared to provide care…..South Asians often ‘feel’ obligated’ to look after their own….but are they willing and are they prepared?  do they know how to access services and provide practical and emotional support.? Those willing may not know how to care.

This was the whole aim of the study…..is there a link between between, obligation willingness and preparedness to the carers outcomes?

They aimed to recruite over 300 but they recruited over 700, which was astounding…..the numbers were almost equal between white British and south Asian carers….

White British perceived they had less family support than south Asian but when it was measured, it was almost the same….south Asian felt more obliged, white British felt more willing….interesting finding…….

They gave the carers cameras to take photos of what helped them care….and at what point..

There is no word for dementia in the South Asian community and so the study referred to it as memory problems, but then the carers struggled to understand the different issues that affected their loved one that also come with dementia….

The carers took amazing photos

She asked why one carer painted their door yellow and red – it was to enable the person with dementia to go out on their own and know which was their house when they came back. When asked how they were coping, they would say they weren’t, but the photos allowed their coping strategies to shine out without them even realising how inventive they were being…..

The preparedness for decisions around residential care was fascinating between white British and and British south Asian carers…..

White British expected the person to move into a care home, whereas for the British south Asian carers it was far more complex – once they’d got over the cultural stigma associated with moving to a care home, it proved difficult to find care homes that adequately recognised their cultural needs, language, etc…..

Carers often say..’never, never will I allow them to go into a care home’…..but once difficulties arose and dementia progressed, views changed…..

Sahdia also ran alongside the main study, a study for future carers….those who weren’t current carers….the method was through a one off online survey and focus groups….they received over 1200 people instead of their low target of a couple of hundred….amazing…..more fascinating findings……..many had unrealistic expectations and thought there were wonderful services already in place……😳…..

Older members of the South Asian community were prepared to go into care homes, but the younger age group said ‘no way’ but had unrealistic expectations of what ‘caring’ entailed…

I could have written soooooo much more, so much came out of the study……..but this blog would have had to be several blogs as it would have been so long…..and I simply couldn’t type quick enough!!

Preparedness seems to be the key to carers outcomes…..so preparedness is what Sahdia will focus on next. What should be in place to enable carers to care and that’s where our workshops will come in this afternoon….to come up with the top 3 topics which would enable people to feel prepared to care

The questions from the audience followed…..including the existence of South Asian Care Homes. No one knew of any, but one person said how they didn’t necessarily need their own homes, they needed to be accepted in existing homes with knowleable staff in the cultural  differences…

It was then our turn as Research Network monitors to give a brief talk about our role….as critical friends of Sahdia…..

Sandra joined the Network exactly at the same time as me. Sandra was followed by me and Htay – we all had different stories and different reasons for being there…..it’s personal stories that make the value of research come alive….one thing I said was:

The academic brings their professional expertise, we bring our expert by experience expertise and together we make a winning formula for success.”

After lunch and much chat and meeting new people, we broke into workshops – 8 workshops that are going to create a support package for carers……

Me and Prof Jan were leading the ‘Living with Dementia’ table. So many things came out……the difficulty in getting diagnosis………the importance of talking to others……responsibility to be signposted….’we become compulsive liars’ to enable people with dementia to accept help, said one…..the pressure of being a carer…..of not knowing what they don’t know……the need for education in society and in healthcare professionals……

One person gave an example of her mum being excluded from the church committees when they knew she had dementia, which upset all of us…..they thought she was no longer capable……😔….I said they need to go to the church and explain how that exclusion was soooo wrong………and why…….

Why are we at the bottom of the pile for support and service…….? I said, We’re the easy option to be forgotten because we forget and carers are so busy caring they don’t have the energy……

Soo good Jan wrote notes as I hardly typed anything – that’s how good the conversation was and I had to concentrate……..we spoke for an hour and could have gone on for hours…

Each group feedback their finding……….I was defitely running on empty and my typing stopped…

But…….what am amazing day…….meeting amazing people once more……listening, sharing and laughing together …….the perfect combination…

Sahdia should be so proud of her study…..so proud of today…….and so proud of the informative magic book  published from the findings….