I found this podcast lurking in my blog file having forgotten all about it š…..it was something I recorded possibly a few months ago.
The Royal College of Physicians of Ireland were creating a series of Podcasts on a wide range of health issues. Ours was titled:
Words to live by – hearing the stories of dementia…
I was joined by a lovely fellow playmate from Ireland, Kevin Quaid who is the author of āLewy Body dementia – Survival and Meā…..
Now that so much time has gone by Iāve forgotten any detail and when I listened to it again, it meant nothing, but it was a fascinating conversation. It is long, about 90 minutes, but well worth switching on in the background while doing the ironing or in the car maybe…..
Anyway, hereās the link to the website as there are various methods of listening to select, Apple, Soundcloud, Spotify…..but I listened through Soundcloud….if you click on the coloured writing the web site will appear…..
My playmates at Minds and Voices have been helping me with the writing of my second book (very weird saying that š³). I was determined this time to have the voices of others, quotes from playmates on each topic within the book. Each week, me and Anna, my partner in writing, have been setting them their āhomeworkā šready for our weekly meeting via Zoom on a Monday morning. Weāve had such wonderful discussions and I think theyāve enjoyed it as much as I have. I transcribe each chat so I can send Anna some thoughts to include ā¦. Weāve also had a handful of other playmates helping, but in the main it was easier to ask Minds and Voices….
Well the final section was all around āAttitudeā and we had a really good discussion. The attitude of ourselves, of others of professionals and how theyāve changed since diagnosis.
In the main, we all shared similarities; how weād been devastated at the beginning, then after meeting other playmates, weād realised there was a life still to be lived. Some significant others in our lives had gone through the same process with the same outcome, but others had remained detached, some even becoming invisible and out of our lives.
The part which took me by surprise was from one of my playmates and his sister. Theyād we chatted about my questions in the morning before we met on zoom about what he remembered about his diagnosis and he doesnāt remember when he was diagnosed. What was interesting was that after diagnosis he was put in touch with 3 different services – the farm he goes to, Age UK and Minds and Voices. In his recollection it was Minds and Voices that coincided with his diagnosis, because the other services didnāt focus on dementia. The man from Age Uk was a befriender so they went out for a coffee, went out for a walk, but Minds and Voices was the point he was labelled with dementia. So Minds and Voices created that label.
It wasnāt a word heād come across or was familiar with and it was only through the constant reference to it through Minds and voices that he got the label
Damian, our able enabler added that he often thinks the very fact that we speak to people with dementia is rubbing it in. But thatās a great case for ānormalisingā dementia so that we donāt need specific groups.
We should all be accepted in our community and there shouldnāt be a need for a niche group and the fact that we have, reinforces what my playmate said. If Iād been diagnosed with any other condition. I doubt it would have restricted me as dementia does in society. As our other able enabler, Anna said, if we were in a wheelchair, a community group would provide a ramp or a way to allow us to join, but because dementia is an invisible disability it doesnāt work like that.
It such an interesting thought. There shouldnāt be a need for our groups really as we should be able to mix, talk and be understand by anyone but the fact that we have to have these groups at this moment in time is more powerful than we imagine.
One playmate would love to join ordinary groups, art groups, WI etc, but they donāt understand how to accept her and what support she may need so she feels isolated. I remember joining a choir where the leader insisted everyone learnt the words and didnāt read them. I loved the choir and singing new songs, I just couldnāt remember the words if I hadnāt sang them in the past. She refused to allow me to sing with the words in front of me, making me feel very different and foolish so I had to leave.
Maybe thatās why many groups, including ours find it hard to get new members because they would feel labelled? But the community can isolate people with dementia from ordinary groups by not accepting, not understanding, so they can be left with nothing. If only there was a compromise to be hadā¦.but sadly in many cases there isnātā¦..
Should we be asking if we perpetuating labelling ourselves? Iād never considered how DEEP groups and many like them can be adding to the problem, but until society changes itsā attitude this is how it will be, this is how it has to be as we have no alternative.
We ended our session with a beautiful classical recital from our playmate Monica as we do every weekā¦.displaying her talent beautifully…as Iām always saying, āWe all had talents before a diagnosis, we donāt suddenly lose them overnight when we receive a diagnosis..ā and Monica displays this beautifully every week….
By the time you read this me and Anna will have hopefully finished my book and sent it off to our publishers, Bloomsbury, to see if they think itās rubbish or clapping their hands. But such is the slowness of the publishing world that itās not due out until early next yearā¦ā¦Iāve also given up trying to remember what Iām allowed to say and what I canāt say so Iāll either be ok or get my wrist slapped š¤£I hope youāll think itās worth waiting for….
Some weeks ago, or it could have been months, who knows š….I was asked by Belfast born novelist, Jan Carson if I would take part in the Northern Ireland Science Festival. The bonus would be that it was also include my partner in writing Anna Wharton.
It was to be a conversation around our writing my book together, Annaās imminent brilliant new fiction book āThe Imposterā , which includes a clear element of dementia and is full of twists and turns…and how literature depicts people with dementia. Some of you, I know have seen this as you booked on line for the free event, but here it is for those who missed the interview.
This is the blurb about from their web site…
āIn this much anticipated conversation, Belfast-based novelist Jan Carson will chat to Wendy about her experience living with and writing about dementia, alongside author Anna Wharton who helped co-author Wendyās memoir and has recently published her own debut novel, The Imposter in which she further explores the theme of dementia. Queen’s University Belfast based linguist, Dr Jane Lugea will also be joining the conversation to talk about her AHRC-funded research project exploring how writers represent dementia in their fiction.
We are delighted to bring together three inspiring women for an important conversation about how dementia can be written about with dignity, hope and imagination.
anyway, you can watch the interview by clicking on the link below – make a cuppa and sit and enjoy…..
On the 7th September 2020, Adam Smith hosted the Dementia Research Chatathon LIVE – to share information on the wide variety of research taking place across the world, and to raise money for Alzheimer’s Research UK.
He invited myself and my lovely playmate Chris Roberts and his equally lovely wife, Jayne Goodrick, to open the 12 hour session. You can hear what we said on the link at the bottom…..
I hate watching myself and made the mistake of watching it to remind myself Ā what weād spoken about. But the continual twitching of my face and movement of my hands I find so sad. I always used to look so calm in my previous life. The aura of calmness was a trademark, people used to say, but not any moreā¦.the intense concentration can be seen on my face. Trying to keep up with the conversation, a sign of my dementiaā¦.I can be twitching away, these involuntary movements taking over, then Iāll realise and can stopā¦.only for them to start again a few seconds later šš¤·āāļø
Well, as youāll see and hear, Adam was worried about filling the 30 minutes we had with him, but once you start us off, you can never shut us upā¦.šš¤£
When I say the words āSocial Careā to you, what images, what thoughts spring to mind? Like most, you probably have said āvulnerableā āneedyā, for older people amongst others maybe? Youād be like most people in society. But what if we wanted to change the way people thought about Social Care? How would we do that? Certainly a mammoth taskā¦ā¦.
But we all know the current system doesnāt work so something has to change. Social Care appears to be the poorer cousin of the NHSā¦we talk about āOur NHSā, yet Social Care is seen as happening to others, someone elseās problemā¦..
I wrote about my involvement with Social Care Furture with Neil Crowther and Philly after our last meeting ā you can read it here if you like? They were just my initial thoughts.
Well we had our second meeting last week, to hear the findings of some focus groups theyād run. The aim being to find out what the public thought and then trying to change the way they think.
Normally, if I was in a room for the meeting, Iād be typing away happily throughout but on zoom it isnāt possible. My writing has gone really up the creak over the last few years but on that day I thought Iād try my faithful post itās again but just write a few words on each ā key words that might spark recognition. By the end Iād finished the post it pad and had a pile of somewhat illegible scrawl. Some I could make out some I just didnāt have a clue. I also took screen shots of all the slides to help me write this as well. So weāll see how it goesā¦ā¦
At the moment the Social Care system functions around people fitting into services. But does the government know what we, as individuals need to feel enabled and supported? Of course not because they make assumptions that we all fit neatly into boxes. Weāre offered services not choice. So maybe the change needs to be to offer choice and not to be told what we might or might not be eligible for as whatās available may not give us what we need in order to have a life?
Government departments work in silos at the moment instead of working together, another problem for Social Care. Philly gave the example of the Department of Works and Pension penalising you for having a spare room which maybe leads someone to not being able to have live in support to provide care. Nothing is joined up.
People need to feel āvaluedā, āof useā no matter what their situation. Like people with dementia still need to feel valued yet weāre so often written off. The medical world offers us nothing positive and so often follows the line of āThereās nothing we can doā so the balance of medical and social needs to be addressed.
So how do you move from a vision so entrenched in peoples minds of social care happening to someone else? We need something concrete to offer people. Social Care needs to be seen as general health and well being, not something accessed just at crisis point.
The company that had been tasked with holding a focus group Ā gave us a breakdown of the process. The first stage being a āMixed Persuaderā group ā 22 people from different backgrounds, of differing ages, sexes etc, but āpersuadableā simply because they were politically middle ground ā neither extreme right wing or left wing.
All this took part over 5 sessions across zoom.
They were asked initially āWhat does a good society look like?ā They all agreed with our concept of
But they were entrenched in the concept that it happened to others and therefore had nothing to do with them. As I said before, Ā strange how we call the NHS āOur NHSā yet social care is for āothersā
The NHS is seen as an entitlement yet being in receipt of social care has negative associations.
The long term narrative has to change, the language used, the messages given out. The media and political climate is hard to change and influence and itās them that often influence how people think.
Covid has provided us with a good example of coming together as one. People playing by the same rules. People respond better if they have something concrete to follow. So once masks were brought it, it gave people āpermisionā to wear a mask and not feel stupid, so more wear masks. Obviously youāll always have those who donāt follow the rules but these are then frowned on. A simple message clearly stated is more accepted and understood than something woolly and unclear ā as weāve seen from the government throughout Covid.
As the 5 sessions went on for these 22 āpersudersā they began to see our way of thinking, but were still stuck as they needed to know āwho would be responsible, how would it work practically? Our ideas appeared too idealistic and they wanted the detail of who, when and how?
We accept we have to pay taxes for the NHS but not for social care at the mo as it still happenesā to othersā in many peoples minds so not relevant to them and therefore not acceptable to have to pay taxes.
In my opinion, the NHS mixed a trick during the worst of Covid ā people stayed away from A&E for fear of getting Covid. It was used for the right reason, for emergencies, but mishaps and people becoming unwell didnāt stop happening, so where did people go? Maybe they ventured to pharmacies for advice, Minor Injuries Units or asked family or friends. They didnāt need A&E; they went to the right place for help. But quickly the ānormā has returned and people are back using A&E inappropriately.
We need to create a society of āinterdependenceā. We often talk about enabling people to live independently but really everyone is āinterdependentā on someone or something else in order to live their lives. Stuff happens in our lives that leads to us needing extra support. I could say I live independently but I donāt. I canāt manage to live alone, as I wish to live, unless others support me.
I loved the blob tree slide above that Ā they showed to demonstrate thisā¦
Community assets arenāt seen as social care, yet my community supports me without even realising it. I support people without even realising it. I post my pictures, which make people who have been isolated, feel happier and enable them to feel part of our community and less isolated. So āresourcesā are within all of us within our own communities. We can give as well as take support.
Often bureaucracy comes in the way of people helping one another. Covid, again, has come up with the example, whereby communities wanted to help feed one another. Normally there would be reems Ā of paperwork and bureaucracyĀ to pile through, but this was all cut and stopped and communities were allowed to cook meals for those who needed them and deliver them.
As one slide said:
So we are part of the solution ā each and everyone of us. We carry a complex history re social care, how we see ourselves and one another. We need to get away from the concept of Social Care as a service that we have done to us. So who would be the āresponsible agentsā ā ie who will be responsible for delivering all this change. Well we have to get the right balance between Governement and local commissioning right.
At this point in the meeting we were split into two groups magically on zoom, very clever….
The challenge was:
ā to explain in straightforward terms how it is we would like social care to be organised in future to deliver our vision and who can and should do what in the immediate future to start moving us there.Ā We’ll be expected to imagine we’re sat at a bus stop with a minute to tell a stranger in a way that might hopefully enlist their support.ā
Ā It was so difficult to be succinct, and once back together, time for a sneaky piccie of some of the people Iām involved with holding up their yellow cards
But basically the points made by both groups, when brought back together, was that social care is everyoneās business. Weāre all affected. From the mother and toddler club that supports mums to come together with their children to someone in need of support in the home. Government needs to fund social care but allowing local governments to use the funding different, using the resources from communities to enable support and for each of us to give and take from our society in order to live our lives to the fullā¦ā¦.
Ā With the news from Scotland of the potential for a National Care System along the same lines as the NHS, maybe this would make social care everyoneās concern just as the NHS is. Maybe this would stop people seeing social care as happening to āothersā and not them. But Iād wish theyād call it National Support serviceā¦..itās not always care that people need but support to be able to live the life they want to leadā¦
Phew! That was heavy and very hard work š¤Æ but I find it all so fascinating and worth whileā¦..roll on the next meetingā¦.
All Party Parliamentary Groups still continue during these odd times and I was asked to contribute to one via zoom yesterday on housing. I was asked by Lord Best who is a British social housing leader and member of the House of Lords to speak for 8 minutes, the same time given to all, about my experience.
Katey Twyford had emailed me asking if I would be interested ā she is the External Research Associate at the Centre for Loneliness Studies (University of Sheffield), and Housing LIN Associate (Co-lead for Dementia and Housing). Iāve tried to find out what the LIN stands for but have failed miserablyā¦..
I was actually nervous, waiting for the time to come to log in. No playmates or familiar faces to greet me, just strangers on a screen, something Iāve done a million times before in person and never been nervous, so why now? I spent the half hour before sat watching the birds in my garden simply to calm down
Whenever itās a zoom invite that Iām not familiar with, something always goes wrong. Usually I click the link and hey presto, Iām there or inside a waiting room until someone lets me inā¦but I knew from the link provided that this wasnāt a normal linkā¦.
Katey had asked if I wanted to meet via Zoom beforehand just to say hello and hear the format, but I knew that wouldnāt help with the on the day technology, so we exchanged txt numbers instead for when the problems aroseā¦.and they did..š
I couldnāt get in and it simply kept saying, āInternal meeting, please log in as your companyā.
Luckily there were some very helpful people on hand. They told me to log into my own Zoom account and then use the details theyād sent. Easyā¦unless you canāt remember your password šā¦Stress levels rising, I clicked the button saying Iād forgotten my password and sat waiting for the email reset to arrive. Time was ticking and I was speaking near the beginningā¦.I decided to give up and send Katey my speech for her to read out on my behalf, but was very disappointed, when suddenly the email popped through and I reset my password, logged on, entered the details theyād sent and appeared in the waiting room.
Suddenly I was on screen with lots of unfamiliar faces, scrolled across to see many others, including the familiar face of Dawn Booker from Worcester University. There were architects, MPās Researchers, Housing Trusts and many more in attendance over several screens…hereās a piccie someone posted on Twitter of 1 screen….
Messages had come on screen saying hello as well as on my phone. Suddenly Lord Bell, welcomed me and it was my turnā¦š³ā¦..luckily Iād typed everything out so could simply read the words otherwise Iād have been a right numptyā¦.
Part of what I said was:
āMe and my daughters didnāt realise at the time that I wasnāt capable of choosing an appropriate house. Iād always relished moving in the past and taken on projects and done all the work myself. Suddenly I chose a house because of the big picture window that overlooked an old paddock, ignoring the 2 gardens to maintain, the steps up to the front door and at the back of the house, the 3 bedrooms I didnāt need. But we are where we are and now I adapt it as dementia throws challenges at me.ā
I also mentioned our Dementia Enquirers project ā āLiving alone versus living as a coupleā as there are many difference in housing needs coming up but also mentioned how weāve a long way to goā¦.
It seemed to go down well and there were lots of questions afterwards. One about the cost of the adaptions I make. I said small things often cost little but make a huge difference, for example, painting a dark blue border round all my light switches so I can see where they are better…and many more..
After me was Ruth Eley from the Life Story Network, who raised some really good points from her work over in Liverpool, especially around the complications of applying for services. I added:
āWe donāt know what we donāt know. Services may exist that would be very good for lots of people but if we donāt know of their existence theyāre pointlessā so we all agreed that communication needs to be improved especially post diagnosis.
After Ruth was someone from Stirling University, but sadly her presentation went over my head and I couldnāt take it in. Iām sure some very good points were made but not for me as an audience. I picked up one interesting piece of data, which said how the house builders are building less 1/2 bedroom houses in comparison with the percentage needing them…..
The presenter showed one slide of a building, designed for people with dementia that had won awards. I was quite surprised as the first thing I noticed was floor to ceiling windows and I would have found those distressing. Whenever Iāve been in a room with floor to ceiling windows Iāve wanted to walk straight through them and felt as though I would fall off the edge. It looked aesthetically pleasing, as so often is the case, but it mustnāt replace practical safe space. You need small pockets of differences in these buildings as one design doesnāt fit all and dementia friendly design is no exception to this….
It was a really well spent 90 minutes. Some very kind, very approachable people on the call and some lovely comments and thanks. Lord Bell said how they hoped to have a paper by March next year along with recommendations, so hopefully the work will be ongoing and the outcomes useful for many.
I pot the kettle on having survived the stress and watched the birds once moreā¦.
Me think, this pigeon looks like I felt…confused and a tad lost but glad to be on the ground….š
The guilt that comes with a diagnosis of dementia reared itās ugly head again last week. I sat with 2 male playmates, both married, one living with dementia, one the carer for his wife.
They were talking about their situation if the carer had to go into hospital. The person living with dementia felt huge guilt as his wife was due to go in for an operation but was worried about how her husband would cope, who would care for him? She was considering cancelling the operation as they could find no support services to help. The playmate believed he could cope but knew he may forget to do things and was trying to reassure his wife but the over arching emotion was one of immense guilt at having to put his wife through that thought process when she had enough on her plate with an operationā¦..
The other, the carer, had never thought of the situation where he would have to go into hospitalā¦..who would take care of his wife? She needed support and wouldnāt cope on her own for a long period. Once again, the tears welled up, the immense fear, the stress of a simple thought.
Itās often been said that carers āsufferā and people with dementia try and Ā āliveā. There comes a time when we (people with dementia)Ā become oblivious to the situation around us. Itās then that the hardest times must inevitably be for those caring. At least, before we āgo over the edgeā into someone reliant on others, we can talk to our loved ones, comfort where we can. But when weāre no longer capable of seeing the situation in all itās glory, the emotional stress is in the sole ownership of those who care.
So what about people like me who live alone? Well I still have guilt, the guilt of impinging on my daughters lives unnecessarily. Of having to rely on them to do some things for me when I know how busy they are. I try not to ask as I want them to live their lives.Iāve always told them, I donāt want them to be my ācarerā, I want them to remain my daughter at all timesā¦..should I still be around when I āneed careā, then Iāll allow others to do thatā¦ reluctantly.
But I donāt have the guilt, of being with someone I married, someone I hoped to share my life with into old age, of them seeing me deteriorate, of becoming reliant on their existenceā¦.I see that as an advantage of living alone. I can repeat things to myself all day long and not annoy me. I can sit in silence if I want to without feeling guilty about not engaging in conversation. I can get things wrong in my own home and have no one worry about what Iāve doneā¦ā¦ā¦I donāt have that guiltā¦
One story sticks in my mind. Of being sat with a couple somewhere. The husband had dementia. The wife was saying how she would never see her grandchildren again as they now lived in America. It was āhis faultā. The guilt on the mans face as he lowered his head in shame, was tragic and still stays with me.
Sadly we have no control over dementia. We can do everything we can to slow the deterioration, as I hope Iām doing by doing all I do, but the guilt that dementia brings is the cruelest guilt as thereās nothing we can do about it.
It was a night of sleep, wake, sleep, wakeā¦.my eyelids firmly closed in exhaustion from the day but my eyeballs wide awake and staring into blacknessā¦..weād had a lovely meal the night before, a meal of sharing wonderful stories, sadness, laughter and everything in between ā¦canāt believe I didnāt take a piccie!
My eyelids finally secummbed to the mischievous eyeballs behind them and opened for the day. Showered, I settled down with a cuppa to go through my morning routine ā solitaire, scrabble and my new found friend āWordscapesāā¦.just as an extra when my friends have yet to take their turn at scrabbleā¦..
Philly knocked for me at 8 and we went down for breakfast before the start of another heavy dayā¦..but at least my head felt betterā¦even without sleepā¦ā¦šā¦(thatās dementia for you ā just no telling from one day to the next)
Over breakfast we had a wonderfully emotional and passionate discussion about Personal Independence Payments (PIP) as I have my next onslaught starting into the system on Monday. The distress and emotional turmoil this is causing for people is beyond comprehension so we decided we need to do somethingā¦..Philly wished she taped that conversation as it was so off the cuff so filled with detail from each of usā¦ā¦..
Packed and ready, we met in reception and trundled to our venue for the dayā¦the same lovely one as yesterdayā¦ā¦.
Today it was the Pioneers meeting. We sat chatting while we waited for Mhari and Hughā¦ā¦.we were in a different room today, a smaller one. It was Georges first meeting as a Pioneer and Mhari and Hugh had travelled just for the day.
I asked for a piccie while we were all relatively fresh
Philly started off telling us the plan for the day ..and then briefly spoke about yesterday and the ethics of research and what we might do differently. We will come up with a simple ethical framework to share with the next lot of grants and ask them how theyāre meeting our ethical frameworkā¦..
We sat and discussed the make up of the panel and agreed we need an academic to sit and advise us but with no voteā¦.someone with expertise in their field who would be happy and understand their role as an advisor ā¦ā¦
We, as pioneers, all volunteered to be on the panel and discussed which academics we trusted to work in the way we needed and who we thought might be prepared to work our wayā¦ā¦
Weāll combine ethics and decision making for the next lot of applications for research from people with dementia at our Pioneers in our Woodbrooke meeting in Juneā¦
We decided we would call ourselves DEEP Ethics Panelā¦..this is the start of a much bigger piece of work which will inform the more formal ethics committees and hopefully change and question current processesā¦ā¦.
We stopped for a cuppa and cookieā¦ā¦and moved on from ethics to the 10 new projects that will get funding in June. Ā Groups of people with dementia from the DEEP Network, deciding what they want to research and applying for a grant.
Today we wanted to discuss the process we had last year and what might needed changing after the lessons learnt from the past yearā¦.not that we could remember, but thatās why our āable enablersā are thereā¦..š
We had 10 decisions to makeā¦.so Philly had to keep us on track and crack her famous whip šš¤£
We went through the list of ideas of what it means to be āinthe driving seatā of a research projectā¦.the guidelines we expect groups to follow when conducting research while realising that everyoneās contribution could be at different levels of abilityā¦..
Much conversation took place around emotional decisions and factual decisions
We had a quick break then the final session before lunch. We came back and Philly asked me to read my blog about yesterdayā¦.which was as much a surprise to me as everyone else!
Philly then fed back how theyād received the numerous emails from the ally academics who attended the first day. They were all full of passion, full of enthusiasm and hope for what we were doingā¦.we know some academics would want to be involved for the wrong reasons, but those allies seemed to get it in my opinion. We all have our different opinionsā¦.
We had offers of support from themā¦.many academics find the ethics process difficult and someone suggested finding out from researchers themselves what they find difficult that may help us in our campaign to change the process..and highlight the changes needed.
Before lunch the final item was around an idea from Pachael and Philly about using money still available on a project on Power and Control and what barriers exist from us having control over our livesā¦ā¦we came up with loads of ideasā¦..lots of food for thoughtā¦ā¦
We made out way back for our last hour Ā before the end of the dayā¦..
For the Funders, the National Lottery, we have to write an āengagement planā ā¦.who we want to engage with and influence as the National Lottery want to help usā¦ā¦.we obviously want to engage with academic researchers, engage with Universities, with conferences where we can influence a change in viewsā¦..
The last idea was around an article for a journalā¦..Disability and Society journalā¦.
Our final discussion was around the Event in May to celebrate the completion of the first lot of projectsā¦..each of the 10 groups are invited to share their successes and challengesā¦.and hopefully the funders will be thereā¦.
I said we needed to end the whole session by having everyone leave with people sayingā¦..āWOW! Whatās next??????ā
Our last task was to record a sentence about how we feel Dementia Enquirers is going and I said:
āThe seed that was sown over a year ago, is now growing into a youngster and you can see the adult developing and gaining character. Iām leaving this last 2 days exhausted, but once again full of renewed enthusiasm for whatās still to comeā¦.ā
Ā As Agnes said āMy tired is even tiredā¦.But itās nice to feel tired and have achieved somethingā¦..ā Ā And off we went our different ways homeā¦ā¦ā¦the days a blur already…..
A busy week travelling this week so yesterday was another trundle down to London but this time for 2 daysā¦..
It was going to be 2 days of full on Dementia Enquirers with the first day taken up by an Ethics discussion ā the issues for people with dementia and ethics committees, the barriers we face and possible solutionsā¦..
The second day would be a meeting of the Pioneers ā agreeing a process for the next lot of grant applicationsā¦..so 2 heavy but fun packed days with playmates, and our able enablers, Rachael and Philly.
Anyway before the start I had to get thereā¦..a silly oāclock start again as Iād decided against staying the night before due to being in York and I prefer travelling on the day and staying just one night. Iām also not keen on travelling at night, which is what I would have had to do on this occasion. I find travelling in the dark disorientating but in the morning, it eventually gets light which makes it more possible.
The taxi people had asked me the night before if I could be ready 5 minutes earlier so at 05.40 this morning I was ready and waiting with my suitcase and the taxi lights appeared. Itās often a quiet trundle at that time in a morning as neither of us are quite awake. It was all going fine until we got to the station, then I realised why theyād asked to pick me up early ā¦.because he had another run for the same train straight after. He started to rush me and rushing me never works. I hadnāt been organised so didnāt have my money ready, so fumbled about dropping coins and getting in a pickle šā¦I donāt really know how much I gave him and then must have dropped my glove when getting out as I realised I had one cold hand as I stood on the platform trying to get myself back to normal šā¦..Iām fine as long as people give me timeā¦ā¦.but, of course, when others are in a hurry, they forget thatā¦..
The train was on time, I got my cuppa weak black tea and everything was ok in the world againā¦ā¦it was a very busy train though and agitated passengers trying to find seats and arguing with staff made for a stressful journey on an already discombobulated dayā¦..I didnāt feel right, so instead I tried to disappear into my own world and look out of the window ā¦
Soon the daytime appeared making it a much friendlier worldā¦.
I got to London in plenty of time to find this new venueā¦.so went for an amble first ā¦..and ended up leaving my stick somewhere šā¦.Iād had my suitcase to balance on so hadnāt noticed until I went to swap handsā¦so I had to retrace where I thought Iād been. Turns out I had left it in a shop but theyād taken it to lost property š³ā¦so then had to find Lost Property, then they wanted ID, and to fill out a form š¤Æš¤Æš¤Æš¤Æš¤Æš¤Æ but they saw my lanyard and decided I wasnāt a risk and let me have my stick backšš
Because of the stick panic, I was then in a bit of a pickle about being late and ended up getting lostš and Google took me through a housing estateš¤Ŗš±ā¦ā¦.went the wrong way ā¦but then I spied a sign on a building in the distance ā Lumen, my destination. Playmates were there so much appreciated hugs were given all aroundā¦..I went outside into the courtyard just to settle my head…
We finallly started and Rachael and Agnes were chairing the day. We went round and introduced ourselves. Today we had many people there, including playmates and academics who had been invited to help us, from a variety of Universitiesā¦..
Rachael whizzed through quickly saying what Dementia Enquirers is ā people with dementia leading reasearch from the front on subjects WE think important to research. Along the way itās hoped that people with dementia will learn new skills, such as around ethics todayā¦..
Dory introduced the āJargon Jarā to emphasise the need to use plain English otherwise you have to pay a fine. I said āor you can write us a cheque at the endāā¦.šš
Thereās a barrier around ethics approvals for our projects ā do we need ethics approval? And if we do then there are so many barriers to achieving this. But can we create a new system thatās quicker, a more urgent way.
Tom Shakespeare said the problems are that the ethical process is difficult and complex for the professionals so for those with cognitive difficulties itās even more complex.
Publications will ask where did we get ethical approvalā¦..or wonāt publish, so thatās another barrier in having our work taken seriously.
The Pioneers then spoke about the issues ā¦ā¦mine was:
āIfwe can influence ethics committees to see our ability differently ā to see our un- vulnerability as they are always trying to protect us.It will dispel myths around our capabilitiesā
Ā We want to create our own system, our own ethics processā¦.āThe University of the Dementia Worldā as Agnes said. But as Tom said, we still have to follow certain laws.
Ā The academics then responded. Someone said thereās a cultural problem as even Junior Researchers have problems when needing extra support and help.
If we create our own ethics process, will it be considered as something to take seriously?
āThe more noise we can make about being disempowered, the betterāā¦ā¦.said academic Lucy.
There were disagreements and voices raised in the room, but we all have respect for one another and could listen to each otherās opinions. We were hearing the frustrations in peoples voices about some of the current systems. I started to get confused as to why we were here and getting a bit discombobulated but think that was just me and my brain on the dayā¦..
We finished off before lunch with what we need to consider to set up our own ethics committee ā¦..working in pairs, one person with dementia, one academic. I was working with Tracey from Worcester Uni. I found this head blowing just to understand what I had to doā¦ā¦.the conversations going on around me made my head buzz. Took me a while to simply understand what I had to do and Philly came along to help and then Tracey tried to help and eventually I could do enough to contribute, but not to my usual standardā¦..just not a good day for meā¦Tracey drew the short straw getting me today! š¤Ŗā¦.
Philly went through Ā all the post its trying to gain a consensus….no easy task!
More discussion followedā¦.on what this process, committee would look like, building trust between people with dementia and academicsā¦but it was time for lunch and a head breakā¦ā¦.
After a lovely lunch where the chatter continuedā¦ā¦Agnes started off the afternoon to help us create an ethical approval process with people with dementia leadingā¦..
Ā We had to list step by step what would need to be in placeā¦ā¦again Tracey drew the short straw and had meā¦.šā¦ā¦but we managed to get through it before the discussion took place. Ā But in between Agnes did a wonderful relaxation 5 minutesā¦.and then we continued with the last hourā¦.we each fed back what weād come up with which put altogether was very comprehensiveā¦..Doryās group got a brownie point for suggesting a 15 minute video to play each time to help us remember what weāre doing and how.
someone said, at the end…āit would have taken others many months and many more meetings to achieve what we achieved todayāĀ but they have one thing we donāt…..time…..
There were lots of different opinions in the room and Agnes and Rachael chaired amazingly …….but as Agnes said
āWe rise above our differences to get an outcomeā ā¦ā¦..a good way to finish an intense but good dayā¦ā¦.and all I wanted was my hotel room and silenceā¦ā¦.
So after Mondays venture to London, yesterday it was the turn of somewhere more local, York. Anna Harrison, Dementia Action Coordinator in York and able enabler at Minds and Voices, had asked if any of us would be willing to attend a meeting of the York Dementia Acton Alliance Steering group. Well normally Iāll leave this to local playmates, but numbers of those available seemed low, so I agreed to tag along. No one with dementia was on the Steering group so we had to put that right and Anna made this possibleā¦
After yesterdays travel escapades, I wasnāt sure whether bus or train was going the be the right mode of transport. The bus over the Wolds in windy weather is a bit of a wild ride, yet the trains to York the day before had been cancelled šā¦ā¦.so I looked at all the timings and decided to gon on the first village bus which would get me into town to see if buses were running and if not, I still had time to trundle to the railway station to see if the trains were riunningā¦..š¤¦āāļøā¦things we have to do when we rely on public transportā¦ā¦.I knew Iād have to rely on a train back as the buses are awkward after 2pm to get back to the villageā¦ā¦.š
Anyway, the village bus pulled into the bus station at the same time as the York bus was arriving, so that made my mind upā¦..although the bus driver asking if everyone had brought their sea sickness pills wasnāt reassuringā¦but very funnyā¦šš¤£
We hadnāt been out of town long when the bus was being buffetted around in the windā¦maybe it hadnāt been one of my best ideas to sit upstairs but thatās where the best views are!ā¦.but at least it was a sunny day as we passed the racecourseā¦..
I began to see what the driver meant about sea sickness pillsā¦ā¦.as sitting still in your seat wasnāt an optionā¦..we passed the usual sights of the llamas in the field, munching away at the grass with their winter coats keeping them snug, the windmills having no problem generating power today as they spun round like the clappers, the flooded farm land after all the storms of late and tractors going about their business no matter what the weatherā¦..
90 minutes later we arrived in York, shaken built not stirred ready and noticed the rain that had started was now falling as snow š³ with the 2 foreign tourists going wild with excitement ā¦.hopefully just a passing showerā¦.because I had time to spare, I stayed on the bus until the station and then trundled to the warmth of the library, the affect on river levels of the recent storms very much in evidenceā¦..
The meeting was all about the current situation in York around services for people with dementia and the way forward so really important. Often at these meetings you find many donāt turn up, but Anna had had so much interest that weād been moved from a small room into the main hall, which sounded really promisingā¦..Anna had txt me in the morning to see if I needed any support but I knew this venue well in Priory Street ā very dementia appropriate venueā¦
After warming up in the library, I trundled my way through town passing the river on the other side, with the famous riverside pub once more deluged by the Ouse ā¦.and the whirlpool I mention in my book clearly in view….
I arrived at Priory Street to find playmates had made it!!! After hugs, a cuppa and lunchā¦..we started chatting while we were waiting for the last 2 to arrive. The issue cropped up of those in couples – Ā āWhat happens to the person with dementia when the partner goes into hospitalā¦?ā Something thatās often not thought of until the problem arisesā¦ā¦ā¦ā¦the emotion both men showed when talking about this was intense. Eddy showing the guilt he felt as someone living with dementia, and Eric from the point of view of the care partner. The emotion welling up in both these men as they spoke about the pressures of living as a couple when affected by dementia.
Playmates Eddy, Elaine and me with Elaines hubby, Eric
Anna and a few other were there. Also there was a blast from the past, Emily Abbott, who used to be our āable enablerā at Minds and Voices when I first joinedā¦ā¦.she now works at Health watchā¦ā¦but lovely to see her and have a hugā¦..Damian was also there, so just like old times ā¦ā¤ļøā¦..I always remember feeling very sad when Emily left usā¦.
Once 2pm arrived, Steven Burkeman, chair for the day, started off. We all introduced ourselves. There were people from York Hospital, Joseph Rowntree, the Council, āWell Beingā service, a Commisoner for Services, Dementia Forward, Solicitors, and of course, Dementia Action Alliance.
I was able to ask if people minded if I blogged and if I took photos. The formalities of the minutes from the last meeting were gone through firstā¦ā¦
Cognitive Screening Resources was up next ā the tests the medical staff have when looking at the possibility of dementiaā¦ā¦.Sonia from the hospital asked some people present to name as many animals as possible, (something weāre often asked to do)showing the stress this can cause when timedā¦ā¦.I always find that hard. The average is 25, but 11 is also acceptable. Sadly mine is always less.Ā What is normal one day might not be somebodyās normal on another dayā¦ā¦So imagine doing the test in hospital, a stressful environment already and you can see the problem.
She then showed the new sensible way to measure confusion ā showing whether the confusion is different from their normal state. So theyāre actually looking for deliriumā¦ā¦
Some are now realising that the usual tests of knowing the date, remembering an address and the normal memory stuff is not a good way to recognise dementiaā¦.we spoke of the futile tests we have to doā¦..the question āWho is the prime minister?ā ā¦if youāve never been into politics, why would you suddenly start taking an interest and knowā¦ā¦ā¦.?
Anna brought us up to date on the latest stuff from DAA. The local fire brigade are keen to promote their home assessment for people with dementia. York now has link workers who socially prescribe ā¦.and for dementia, social prescribing is key and maybe they could promote Minds and Voicesā¦.š¤
The commissioner from the NHS was up next talking about the Strategy for Dementia in the Vale of York. York is the 7th lowest in the country for diagnosis ratesā¦..šā¦.
The expected number of people with dementia in the Vale of York is around 4.5 thousand yet thereās only around 2500 people diagnosed according to the numbers. Thereās a lack of understanding around the value of being diagnosed. Gpās themselves donāt understand the benefits of diagnosingā¦.the criticism by GPs against York is for not having a clear pathway when they diagnose so theyāre now working on a Strategy but not a new strategy as the money isnāt there. So instead theyāll look at what they already have and utilise the good bits to find out whatās needed and whatās missing. We went round the table to give 1 sentence from each person on what should be a priorityā¦.
My one sentence became a few itemsā¦..Not a timely diagnosis but an accurate one, not just setting targets for diagnosisā¦ā¦. Ā not being abandoned at diagnosisā¦..when we get the diagnosis our family get the diagnosis too. Making it known what is out there ā we donāt know what we donāt know. There can be a million good services out there but if people diagnosed donāt know where to start or where to look, then those services are wasted.
Many good sentences came out of that one bit of the meeting to inform Sheila from the NHS Commisioning bodyā¦ā¦.
Sheila then said that she was organising a gathering of 250 GPs focusing on dementiaā¦.and we all immediately came to life and said, āLet us at āemā¦āšš¤£
Anna and Lissa from the DAA then spoke about a mapping exercise day, where what is available is mapped, and evaluating whatās out there and where the gaps are. I suggested each service providing data on numbers and success data etc ā¦ā¦
Carl was the next on the agendaā¦.firstly talking about an app called House of Memories for people with dementia. Objects or photos from the past Ā can initiate conversation with people with dementia. Itās currently been used in Liverpool and is coming to York in April to be made available in December ā¦..
Carl then went onto Age Friendly York, a worldwide initiative through the World Health Organisation. Then āYour Timeā from a leisure persspective and how easy it is to access those activities. Ā Whatās the experience of those moving from work to retirement and the issuesā¦ā¦..so really āAge Friendly Yorkā should be āFriendly Yorkā as Steven saidā¦ā¦
Anna finished off with the Blue Badge Issues in York for people with dementiaā¦..only people with severe dementia are the ones likely to get itā¦ā¦so more action will be takenā¦..I spoke about the Post Code Lottery that exists once more as some areas interpret the guidelines more realistically than other ā York being a poor area.
It was an exhausting meeting as soooo much came out of it and Sheila from the Commisioners actually said it had been the best meeting sheād attended in agesā¦.so now lets see actions come as a result of all the good words spoken for the people of Yorkā¦..as Anna said on a txt to me this morningā¦..
āĀ Itfeels like a turning point in changing hearts and minds..ā
Letās hope soā¦..the passion to change was certainly in abundance todayā¦..
