Those who support people with dementia also need time at Christmas.
They often feel isolated and pressured at this time of year. Trying to juggle caring with all the normal hustle and bustle of getting ready for Christmas must be so challenging at times.
They need a Hug……..just like we do
They need Time……just like we do
They need support…….just like we do
Parallel lives.
If you know someone caring for someone else this Christmas, offer to give them a break. Look after their loved one for a few hours so they too can go and enjoy the festivities. They may just need time to shop, time to wander walk round the shops, time to wrap parcels in peace or do a bit of cooking, or they may just need time to simply be by themselves.
Help make their Christmas a happier one by simply giving the gift of time… 🙂
Yesterday I was with my local Humber Research Team for their quarterly Research and Development Group. Cathryn Hart always picks me up from home and we trundled to the Trust Headquarters with a beautiful morning sunrise
We arrived in reception to be met by someone from Clinical Governance signing in for the day who saw me and said she’d just read my book😳 with her book club and said kind things….so that was a nice start to the day.
What was even nicer was when we walked into Cathryns office and found their research team, ‘naughty elves’ guarding my cuppa tea along with a Christmas card🥰
Photos followed for their Twitter account before I could drink my cuppa.
We trundled down to the room to find lots of last minute cancellations….seems to be a theme this week – anyone would think it was Christmas!
The Research Newsletter caught my eye…..on the front page is a “Letter to Santa” from the Medical Director, Dr John Byrne. I bet it’s not every Medical Director that’s written to Santa!! Wonderful….
And the Research Team won the corporate Services Team of the Year at the staff awards – not the usual team to win awards, so a wonderful accolade for the team……and goes perfectly with the pressie I bought them that they’ll be opening at their Christmas meal next week……..😊
Cathryn started the meeting. ‘Research active Trust’ will be mentioned in all job adverts on NHS jobs so that staff know it’s core business. It’s because the Chief Exec, Michelle Moran is very pro Research, which helps no end.
We’re top of the recruitment in Yorkshire and Humber area of the Mental Health community Trusts.
CQC are now involving research in their inspection of Trusts.
Cathryn spoke about the possible opportunities and studies that they’re currently involved in or are applying for funding. Some wonderful opportunities coming to my region in lots of different specialties.
Cathryn spoke about the success of our Recovery College workshops that we run as a double act on Living with Dementia and what you can do to help and the amazing feedback we’ve had. Our next one is on January 17th at Hull Library.
Professor Mark Hayter from Hull Uni Health Sciences faculty joined us…..
The enthusiasm for encouraging research in the Trust is wonderfully heartening to hear. So many diverse projects and research being applied for or happening at the moment.
Their next Trust Research conference is the 15th May….but places are going quick…………they were all sold out within 3 weeks last year but amazingly they’re going quicker this year……😳
We always finish off with someone being invited to speak to a more general audience, so others joined us and Professor Mark then spoke about the Faculty of Health Sciences Research Strategy…..it was lovely to hear him say that strategies are pointless unless it works alongside an implementation plan……..otherwise it’s simply a document to tick a box…
He gave some fascinating facts about the area including Hull being a good place to do population type research as the population doesn’t tend to move around.
He spoke of the complexity and need of the University to be recognised as the success of the research and it’s affect on changing practice in the wider world affects the amount of money given by the government.
He spoke about the Health Sciences faculty being the one that carries out the most research so a very valued and valuable faculty for the University.
Another fascinating fact is the numbers of 18 years old is now lower so the same number of universities are seeking a lesser number of 18 year olds and it will be like this for a few more years…..so they have to diversify……They are putting a lot of work into Grant Application quality as the funding application process is highly competitive……and insisting academic applicants are planning ahead instead of leaving it until the last minute….
Wonderful to hear him say that Research Ethics needs a tidy up…Yup…….
He also gave me the quote of the day…………
“From Sperm to Worm”
about the span of the research undertaken in the Faculty…….
So to the follow on from yesterdays blog……I finished the meeting at Dementia UK with a banging head as usual. It was my first time there so I had to concentrate even harder to understand why I was there. Damian trundled back to the tube with me, Diane and another lady whose name I didn’t get. He kindly offered to get off at Euston to make sure Diane got there safely. I knew Kings Cross well so was fine.
I briefly went back to the hotel to find my room before my tea time meeting with Ian and Tom Pauk . It seemed like a good idea at the time to arrange this meeting at tea time, but I soon realised my enthusiasm at hearing their plans would not compensate for my rapidly hazy brain. I should have taken my ipad and typed but I didn’t think….so even though I was with them for 90 information packed minutes, I can only vaguely remember snippets of probably 15…….hopefully Ian will send me a resume of what we talked about as the snippets are so varied, I’m not quite sure how they all fit together🥴
Note to self……don’t add an extra meeting onto the end of an already long day or take someone with you!…..I was definitely running on empty when I got back to the hotel.
So now I’m typing the following morning and reading back through, I remember very little☹️
But my brain has recharged overnight ready for a meeting of the Young Dementia Network with the lovely Young Dementia UK. We were having our research strand meeting first.
Since I was there overnight, I had time to trundle to the British Library and have a wander round the shop, always a nice relaxing experience.
I arrived at Esme Foundation to find Reinhard waiting soon to be followed by Jan, Jackie and Janet …..we began by discussing the research topics the professionals review, for which I then I do a lay review of what they’ve said……
We spoke about how to promote it on Twitter better and threw ideas around…….and worked out the rota for them to do the next batch of reviews.
Need more practice at selfies🤣
We spoke about the Network Conference we’re organising for next June and decided on 24thJuneinSheffield as my lovely friend Prof Pat Sikes had found a brand new venue at Sheffield Uni . The topics were then decided. We’d gone out to the Network and to those who came to last years conference to ask what their priorities were for what they wanted at next years conference. So we went for the top 3, Education of professionals, family interventions, including for children and young people and employment
RESEARCHERS SAVE THE DATE!!
Stands to promote research were considered, so for example Alzheimers Society could have a stand around the Research Network etc, and Innovations might consider advertising Dementia Enquirers. Lots of options. Speakers and types of speakers were discussed…..very excited.
We put our names to our own roles and responsibilities – I put my hand up for advertising on social media😊
Once we’d finished it was the turn of everyone else to arrive for the Young Dementia Network meeting. We were a bit sparse on the ground as there’d been some last minute cancellations due to illness and train cancellations. We chatted and caught up over lunch and I caught up with Keith and Rosemary on his forthcoming book before Tessa started off.
She started off by feedback on the Young Dementia Conference from last year – the sessions where people with dementia took part were the most successful and commented on.
Peter was the first up to give a resume of his meetings with the Dementia Program Board at the Department of health. Sadly my mind wandered and I kept flittering back in and out of the room so don’t have anything typed. I did hear that Psycho social support is the missing link.
Tessa read some notes from Philly Hare on Dementia and Disability from the All Party parliamentary group that she presented to.
She quoted my lovely playmate from Wales, Nigel Ullah – “Society values people with intact cognitive ability” which leads to people with dementia being devalued.
Membership of the Network has gone up to 2087 so we hope we get to 3000 by next September. Peter said we need to get this community working together and with us. A third of this number are people with dementia or supporters and a third of that third are people with dementia – good numbers.
Keith then spoke about his new book, Dear Alzheimers, coming out in April. Seeing life through a diary – a reflective journal approach. 50% of his royalties will go to Young Dementia UK.
Kate then gave me my own pot of tea………brownie point for initiative,,,,,🤣
Janet gave a summary of the diagnosis and post diagnosis work stream. The Young Dementia Care Pathway developed around the ‘I’ Statements – Janet said the issue was around how much it’s being used or whether it was being used and whether it was accessible….work in progress…..
Their second focus of work is identifying the role of the key worker for people with Young Onset. Creating a job spec of the skills needed for this role. Hilda and Jacqui are having a paper published in the Journal of Dementia Care. Keith highlighted that maybe it would be an idea for me and Keith to comment on the job spec.
Third key area is about the expert consortium. Trying to bring certain organisation together to work collectively to provide information in a radical way to try to identify models of best practice that we could influence with regards to UK services. The Stroke model of integrated care might be an excellent to follow. It all sounded very exciting and a wonderful ideal to reframe services and why Young Dementia needs unique services.
It was now 3pm and it’s been a very long 2 days……..brain flittered in and out of existence so detail is now a tad sketchy. Sadly I missed Reinhardt feedback…..caught words but not sentences….
But luckily it was time for a Tea break……and time for a piccie of the view from the venue
Kate fed back on Dominiques strand of Awareness – Fleetwood Memory service have given out 300 of our Gp leaflets to GPS covering Lancashire, Blackpool and Fylde.Yorkshire and Humber Clinical Research Network for Dementia have expressed an interest in doing the same and being involved……wonderful if it happens. They’re currently designing a version of the Gp leaflet for the general public to take to their Gp……
Jan fed back on our meeting this morning, which I typed about at the beginning and on the Angela Project (DEFINITION). She showed a lovely ‘Flower of Needs’ that has come out of the research. Obviously different needs affect people at different times and importance.
I’m not able to show you a picture of the flower simply because the work hasn’t been published yet and it is quite unique. Very exciting stuff.
Instead I’ll show you a piccie of Festive Kings Cross………
The end of a long 2 days but a lovely 2 days………more local ‘up north’ for the last 2 days of the week………then an empty calendar looms large……😳
So yesterday I trundled down to London for my last 2 days there before the New Year. I had 3 reasons for going; the first day I would be with Admiral Nurses LEAP group (Lived Experience Advisory Panel) and the following day with Young Dementia UK. My third was a tad random as I was having tea with Tom Pauk and Ian who wanted to discuss the possibility of having my portrait painted…….as you do…..😳🙈
Anyway the day didn’t start off quite as planned……..British Rail, in it’s wisdom had decided to release a whole new timetable……no problem, I thought, as I already had my tickets……don’t know what made me check the website the day before…..but…….my first train to Hull had disappeared😳 even though I’d booked that train🙄……
We usually have two trains into Hull at silly o’clock, 15 minutes apart, I’d booked on the second one that had magically disappeared and apparently no longer existed🤐. I went into my taxi people to book an earlier time only to be met with a gulp, a roll of the eyes and ‘Oh no not you as well’………of course everyone who had booked the later train now had to catch the earlier one, so no longer were taxi rides staggered…….poor taxi company had to call in extra taxi drivers to start early just because of the timetable changing………She said she would sort me out but not to panic if it was a tad late (they know me well) and sure enough it turned up on time and we grumpily trundled to the station (I must have had a driver who had to get up earlier than expected🙄
It was dark and cold on the station platform. Everyone in their own little world, many of us there earlier than expected……so what happened?…….the train was 20 minutes late….🙈later than even the original second train😏 which left us 2 minutes transfer time to the London train in Hull😫….
Anyway……..I managed to get the London train by getting on in the first carriage and walking through as it departed…… not a good start to the day🥺
It took the world a while to wake up and we were well on our way to London before I could take a piccie….there was a lovely sunrise in Doncaster but too dark to take a photo from inside the train and the a blanket of fog covered the land…
And the further south we got and the sun was getting higher in the sky it was desperately trying to burn off the fog. It was a lovely trundle with beautiful skies waiting for the sun to win the day…..
Damian had kindly offered to meet me at Kings Cross as Dementia UK (home of Admiral Nurses) have now moved to new offices, so safety in numbers trying to find it!
We trundled off to Aldgate to be met by Toby standing outside. Dementia UK now have lovely offices. Soooo many people arrived that I wasn’t expecting. Some from Twitter, some playmates, including George, Diane and Tracey.
A lovely smiley piccie by George before we all started.
We had an ice breaker from Suzy first…she put cards in the middle of the 2 tables with questions that we each had to choose and answer to the group…..
My question was ‘What helps if you’re feeling lonely?’……my answer……go on Twitter and either look or chat…..never lonely with Twitter.
The group was a mix of people with dementia and those who care or cared for someone with dementia so each went through and said who they were as me and Hannah were new members.
We went through our agreed ways of working……..
Toby took us through the impact LEAP has had over the last year, from advising on content and being a critical friend to the Trustees.
We went through the New Influencing Pack which would enable us to lobby commissioners or simply to promote their existence. Much debate then followed on the language used to describe the work of Admiral Nurses.
We were then joined by Hilda Hayo, the Chief Exec, Steve Jamieson who is a Dementia UK Trustee and Faraday who is about to start a new role in Comms.
Steve spoke about Dementia UK being ready for the ‘iceberg round the corner’…….we have to make sure we employ the right people with the right skills. How do they influence the future of Dementia Care? How can people who make decisions, make those decisions without those directly affected? The louder the voice, the greater the influence, so it’s important to work with groups like TIDE and DEEP and also the major charities.
We saw a film about how they raise money and gave feedback on that. George had the great idea of a voiceover being available instead of reading.
Hilda then spoke about their ambitions as a charity for the next few years. Admiral nurses aren’t all employed by Dementia UK. For example, through Admiral Nurse clinics – 45 minute advice clinics, funded by a myriad of organisations. Some are employed by councils, commissioners etc. Various organisations purchase different services from them – for example, clinics and helpline services.….there’s been some wonderful new services created for those with Learning Difficulties diagnosed and also post diagnostic support.
Within the triangle of support, the bottom part is their leaflets and helpline, the second part could be clinics and the top of the triangle is the specialist clinical support from the nurses.
The ideal would be to have an Admiral Nurse clinic in each Gp practice because they’ve found GPS speaking popping in to ask questions……
Lunch time…..and time for a group photo for their web site and mine!
After lunch George took us through our Workplan. We split into 2 tables to discuss…..understanding how we will influence the new strategy …….it started to become difficult to concentrate and my brain was started to buzz, conversations and voices starting to merge……..but a wonderful meeting, with a wonderful eclectic mix of people, each with their own unique experience of dementia at the table, showing the value of the Lived Experience with Dementia UK.
People affected by dementia should have access to an Admiral Nurse when there’s a need just as much as people with cancer have access to Macmillan Nurses……….a long way to go but some wonderful work being done…..
We’re not undermining the wonderful work researchers do, we’re saying that we can bring a different and unique approach to research. But we also appreciate the guidance and advice from those professionals who are already very successful in that area……so this is where our three visitors come into play.
Prof Dawn Brooker and Prof Tom Shakespeare arrived…..David was delayed and Simon sadly stood us up at the last minute🤐…….after initial inductions it was lovely to share all our initial ideas with Tom and Dawn…
I talked them through our priority list and it was exciting to see their enthusiasm. Their role is providing their expertise on the barriers, such as ethics and the technicalities of research. They gave their views on ethics……this brought much discussion, much advice, much to think about. Tom stressed the point that published research shouldn’t be the be all and end all as non published research can be equally as valuable. Bridging the gap between research and storytelling…..both equally important
Lunch time….phew!
It was a lovely lunch and further discussion and ideas flowed. We were all overwhelmed by the volume of stuff and even Philly and Rachael were drowning under the amount of exciting stuff that we all wanted to get going……..it was interesting to see how Dawn, Tom and David hadn’t heard of hyperacusis. So we’ve already taught them something.
The first of my senses to be affected, 4 years ago, was my hearing. My ears became very sensitive to noise and certain tones of noise. We’ve since learnt, through amazing work by Agnes Houston that it has a name – hyperacusis. Many clinicians are unaware of the existence in people with dementia and now many of us are being referred to audiologists for a simple test – an ‘uncomfortable loudness test’, which can denote we need personal noise barrier plugs made specially for our ears. It is common in those with autism but not recognised yet for people with dementia…….
After our incredible busy morning we had time for a lovely piccie of the whole group.
We then had just over an hour to completely empty our heads and fill in the 3 prof advisors on the morning discussion. We wanted to hear their thoughts on how they think they can help
I asked for their initial thoughts on what they thought of our plans. Dawn said it’s so important to ask the right question and being clear on our line of enquiry. Defining the research question clearly. Dawn spoke of the expertise available at Worcester.
David said our second most important question was about who we want to influence as that can often influence the methodology. His knee jerk piece of advice was don’t avoid things just because they seem scary. Confront ‘research’, don’t avoid the fact that its research. Be curious. His interest is getting people to use their own voices. He said:
“create a harmonious cacophony of voices”
Tom said to ask how can we get professionals to continue doing this sort of work long after we’ve finished. He is a qualitative researcher with people with learning disabilities and physical disabilities. He can bring a different but relevant perspective. We must prioritise projects which are original and will have the most impact with the resources we have. Use those with expertise – we don’t have to do everything.
Also to ask what’s the value added value bit that we, as this group, bring to research.
“Make everything as simple as possible but not simpler” and “try to find a charismatic idea” said Tom
“ the topic is like a ball of clay, you’re not sure what it will look like but don’t be afraid that you won’t get a pot at the end of it” said Dawn.
All our heads were spinning and it was interesting to hear the fear some of the group had about their capability in this project. The fact that they spoke out about this fear was so good. They almost set the benchmark. If we can get it right for them then we have a chance of succeeding with others in allaying their fears and concerns.
“We believed we could and we did”…..a nice few words from Dory to end the day…….just can’t wait to get going now….
Innovations in Dementia have a major new project starting called Dementia Enquirers and we had our first meet-up yesterday! It’s testing out a whole new approach, where people with dementia will lead & control our own research, on issues important to us. The Big Lottery has funded the project with a grant of over £500,000…
Philly Hare and Rachael Litherland are our partners in crime and keeping us under control……well maybe……..a hard task for anyone to undertake 😂
It was a very wet murky start to my trundle but at least the train was on time. Bizarrely it was also raining inside the train, causing much confusion and shuffling around playing musical chairs……🙄☔️luckily, I was either getting wet and didn’t realise it or I’d chosen a good seat😊
Rachael was meeting me and some other playmates at Kings Cross before we wandered up to Euston to meet some more…….as it turned out, it was just Carol with Rachael first before we trundled up to Euston to meet Agnes and Dory.
Agnes was busy doing selfies when we found her. She’s found an amazing Tree of Thoughts. Euston station was wanting suggestions from people about how they could better help people with invisible disabilities by posting suggestions on a Tree of Thoughts. So a lovely member of staff was roped in to take a piccie of us all
Dory, Carol, me and Agnes….
We then climbed in a taxi and made our way through very busy London streets to The Royal Foundation of St Katharine – a lovely peaceful haven in the midst of the city hustle and bustle.
Philly, had arrived early to put up some very useful signage. After settling in my room and a much needed cuppa, I joined the rest of the group downstairs bu following all Phillys ‘Wendy’ signs, for a cuppa before supper. Howard, Mhari and Hugh joined us too and lots of conversation and laughter continued.
After a lovely supper I abandoned the group as my head was banging, as usual, and I retired to the peace and silence of my room. My silent community of Twitter, keeping me company.
The next morning, over breakfast, we put the world to rights and laughed sooo much before heading to the meeting room.
We began the session with Agnes leading a few minutes of relaxation which perfectly set us up for the day.
Rachael went through the detail – The big lottery has funded us for 3.5 years. It’s a new approach to research – led and controlled by people with dementia. It will give the opportunity for 16-20 grants so that DEEP groups can carry out their own research/enquiry
At lunchtime we’ll be joined by Dawn Brooker, Simon Denegri, David Crepaz-Keay and Tom Shakespeare – all professionals in their field.
It’s a very unique and exciting opportunity which is actually creating history in the research world for people living with dementia
We need to show the research world that we too can be professional in the role we’re undertaking. Researchers will come through our door instead of us going entering through theirs.
I asked if ethics would be involved and of course if we want to do valuable reasearch that will be taken seriously then yes they would. But what an opportunity for us to go before ethics committees and show them how we all still have talents and need to have our voice heard.
We need to turn research on its head. The Big Lottery were impressed because they like to fund projects which challenge the status quo. Research priorities will be driven by people with dementia.
We spoke of the words we use so as not to frighten some people. The thought of doing ‘action research’ will mean nothing to many. So having conversations with groups and allowing them to decide the words and type of ‘enquiry’ they want to make might be key.
We then had to randomly think of projects that we think would be useful. Soooooo many went on the flip chart……..we were bursting with ideas……wonderful wonderful ideas. 2 sides of flip chart paper……so we won’t be short on projects……..
Over a cuppa tea we then had to choose and tick our favourite 3………but I couldn’t help ticking 5 as there were soo many good ones….my head was buzzing with ideas and excitement…..
Role of the Research Interest Group was up next……again lots of excitement but also fear of our role. We need to work together to find ways of measuring what has changed because of the project.
It’s our opportunity to amaze people in what we can do…..
The final job before our visitors arrived was deciding the logo…….we had 10 to choose from and narrowed it down to 2 favourites………😊
So this won’t be an overlong blog I’ll finish off tomorrow and you can read about what the professional visitors thought about our ambitious aims and how they might help us along the way……….
I’d had an email some time ago with the opportunity to attend an event for Dementia Friends Champions and Communities. My main reason for accepting was because it was local for a change, in Hull city centre, so just an hours bus ride from the village and I fancied a change😊
So yesterday I stood at the bus stop, or rather, leaned, in the gale force conditions….waiting for the 9am bus…..it duly arrived and took me on a tour of local villages before finally arriving in a wet and windy Hull.
I trundled round, looking for the venue, having left the picture and walking instructions on my printer(I think!)🙈 I went into the local theatre box office and they pointed me in the right direction. The local taxi rank was my next stopping point to ask, as I’d found the street but only had a number……lots of quizzical looks as I didn’t have a name for the building, but they helped by telling me the street wan’t that long……🙄
Couldn’t see any numbers on anything and then a large 94 came into view – the exact number I was looking for.
I was met by the amazing June from the Butterflies in Hull. Other people came up and said they knew me too, but June was the only familiar face. Bizarre who I randomly remember sometimes….There were Twitter friends, people who read my blog and someone who said she’d met me a while back.
There were people from North Lincolnshire, Humber and East Riding. Some there were very new and wanted desperately to help but didn’t know where to start but these were complimented by people, such as June, who had been involved in dementia for many years so had a wealth of knowledge to share.
Helen Donald (Dementia Friends Officer and Maria Florez (Dementia Friendly Community Officer) were the presenters for the day.
We started off with a game to find out stuff about each other…….it was during this bit that I met a couple of people who follow my blog and Twitter Friends.😊
Helen and Maria filled us in on the regional and local goings on before it was time for a cuppa tea…..well I’m sure it must have been my 3rd or 4th cuppa tea…….I was mesmerised by all things Christmas in the room….
It was nice to hear what people were doing in the community and the problems they were having. There was a real mix of people; an Occupational Therapist, Care Home’s, Dementia Friendly Community Volunteers to name the ones I heard. Wish we’d have gone round the room just saying who we were and where we were from…… Being a Dementia Champion can be very lonely and so for many it was a wonderful opportunity simply to meet others and share tips.
I think I was the only person with dementia there, which is always sad. More should be encouraged to become Dementia Champions as we bring a difference to Dementia Friends sessions. I always have a buddy of some sort so never alone, which can be a tad daunting at the best of times.
We then split into 2 groups. I was in the group looking at the children and young people’s resources with Helen. The other was on Dementia Friendly Communities with Maria.
i adore doing Dementia Friends sessions with children. So black and white, no strings, no judgements gained through adulthood.
I talked about the length of the session being too long and the action sheet for children not being quite right. Everyone was in agreement I think. Helen said the Action Sheet had already been redesigned.
I said get children to look at the new form and say what they think and others suggested doing a pilot so they don’t commit to something that needs changing again…….
As the conversations took hold dull, confused eyes suddenly started twinkling with enthusiasm and ideas formed and things became clearer.
It was lovely to hear the different stories people had gathered from the children. Some very funny, as you’d expect.
One of my favourites was a little girl, putting her hand up at the end of the session and asking:
“ How many brain cells should we have as my dad says I’ve only got one……..”
Priceless……..😂
I was glad that Helen said it was fine to adapt the sessions as we thought best for the audience in front of us. The written session is very prescriptive and isn’t always appropriate. Someone once described me as a ‘loose cannon’…..can’t remember who, what or where, but I must have done my own thing or said/gone something I shouldn’t have…….
Well the reason I was glad Helen said that is because……I’ve always done it my way……..🙄
I had a banging head at the end as we had done so much thinking……..but it was nice meeting everyone and I went out once more into a gale to be swept along back to the bus station to do everything in reverse……..
Yesterday I had a response from Alistair Burns. I had to read through my original email to find out why I emailed him and the origin of the thoughts! Ha! It stemmed from the conference I went to in Trowbridge last week and the comment I made in my blog about the need to revisit the language we use.
I questioned whether “Living Well’ was the right phrase now. From listening to so many people with dementia or those closest to them, I realised that this was having a negative effect on their well being. They didn’t feel they were ‘living as well’ as others.
This made me sad to think that we’d come up with a phrase, which seemed right at the time, but which now was having the opposite effect on many and making them feel inadequate. In turn this made me comment on the importance of revisiting language.
Alistair always uses the same slides about ‘Living Well’ and his replacement at the conference used them. During my speech, earlier in the morning, I’d spoken about the language debate, so I was surprised when the GP didn’t even comment on the need to debate the language…..or maybe I wasn’t surprised…….
Here’s a reminder of the blog for those interested:
So I must have emailed Alistair, suggesting a need to revisit the slides on ‘Living Well’. I wasn’t expecting a response. I know he’s busy, he wasn’t there, so was surprised when an email popped into my inbox.
My initial reaction was one of disappointment. I felt deflated. Not sure why.
“I was pleased to read your blog. It is a good point about living well and of course, this is not my phrase but as you will remember, was the title of the original dementia strategy and I think the aspiration is still valid”
Well, obviously I don’t remember which was a tad disappointing word to use but one which is casually used by many so I’ll half forgive.
He went on to say:
“I guess an immediate reaction is “living as well as you can” risks appearing rather paternalistic and suggests that people should only be expected to live as well as they can within the resources that are available and, perhaps sets the bar too low. “
And this is the bit that I’d like to throw open to others. I don’t agree that it’s paternalistic and I don’t agree that it sets the bar too low. Just my opinion though.
The bar is set as low as it can possible be at the moment, as there are few consistent good post diagnostic services are on offer. To set the bar at the opposite end of the scale is good for a few but for many appears unachievable. But my main point is that it’s also unrealistic.
For me it’s about setting the right expectations. To give the impression that life with dementia is all good is far from realistic. It’s a bummer, no question about it. We must give hope to newly diagnosed but surely we must set realistic expectations as well otherwise people may have an unrealistic view of what may happen?
To ‘live well’ in my little opinion, implies a good life in all respects ….I have many good bits in my life but each day is dominated by the restrictions of dementia that I can’t avoid.
‘Living as well as you can’, for me, implies that there are ways, within your personal circumstances, to not let dementia become an obstacle when a solution may be possible.
I’ve got some respect for Alastair and he did say he would discuss with colleagues so we’ll see. Obviously to change a long term strategy is difficult but it could easily be referenced to in new slides. After all chagning some words on a document is nowhere near as difficult as living with dementia.
Well that’s my view anyway. Over to you to agree or disagree but it’s important to have the debate otherwise those in power will continue to use words for the wrong reason.
So it’s important to reconsider their meaning every now and then…
as I’m sure I’ve said before, the psychological effect of words should never be underestimated…..
I wish people with such influence could see the value of engaging on Twitter for a debate as Alistair could learn so much about opinions from here, albeit just from those on social media, which I respect is only a small percentage, but still an important percentage and a valuable resource.
I was contacted ages ago and asked if I would be happy to speak at a conference in Wiltshire. At the time they apologised as I would probably never have heard of the place…….it was Trowbridge; a place I lived for a couple of years eons ago – ha! I even still visit as I have friends living there. So I was more than happy to accept the offer as it meant I could stay with my friends.
My journey took about 8 hours 😳🙈 so I went a couple of days before just to have a rest day. I’d come armed with a suitcase of 25 books but luckily really kind people helped me on and off the trains as I struggled to lift it🙄
My day off was taken up by my annual visit to a local garden centre near Lacock that holds a wonderful Christmas display. I wasn’t disappointed and came back laden with a snowman and huge Christmas village 🙄 I got back and suddenly asked the question, how was I going to get them home😱 so it was vital that I had to sell some books to make room🙄
Pam and Kirsty kindly picked me up on a very cold frosty morning and we trundled to the venue at the Civic centre. I was met by David Sheard and Babs from Alzheimers Support. They’d got me a packet of Yorkshire tea just for the occasion 😇
Alzheimers Support’ has the contract in Wiltshire for Dementia services.
I was so thrilled to be tapped on the shoulder by my dear dear friends, Christopher and Veronica Devas. Christopher has trouble speaking now so often sits happily silent but read my badge and said ‘wendy’ which made my day………
David Sheard, the founder of Dementia Care Matters, was up first. His speech was around the family. He asked us to take a moment to say what we thought of the word ‘family’. I said it does not have to mean related. My 2 daughters are the most important people in my life but I also have a ‘family of people with dementia’ It’s people you feel close to.
Today there is a diversity of families……In his presentation he spoke about ‘feelings’and their importance for people with dementia.
“Person centred care’ is difficult to find as the ‘love’ part of Kitwoods flower has become forgotten.
I’ve often said that good dementia care isn’t about the practicalities of care, it’s about, feeling safe, feeling happy, feeling human again.
It’s important to remember that a residential establishment is someone’s home……
Here’s the link to the film
He spoke how the Care Home system needs to change – it needs disruption 👍
Family and Love need to come back into care.
He finished playing the song “We are Family’ and everyone just getting up dancing and singing..
Next up was me……. I followed on from Davids talk speaking about the importance of the diagnosis not being just for the person but also all those around the. Everyone needs support. One bit I said was
“I have a problem with the phrase ‘living well’ it was a good idea some years back as there was nothing else but I’ve since realised from meeting other people that it sets such a high standard that not everyone can reach, so it ends up having a negative instead of positive effect as it makes some feel inadequate. So instead I prefer living as well as you can. It’s so important to revisit language every so often. No, it doesn’t trip off the tongue as easily or fit into slide presentations quite as neatly but it helps so many not to feel inadequate when they’re struggling…… “
It was time for a cuppa and lots of people came and chatted. Pam kindly stood with my books and they were gone in seconds with lots of disappointed people as I only managed to take 25 but could have sold a lot more.
During the tea break I also made 2 new friends
What goes down has to get back up again and 2 people had to help me back up😂
After tea break we heard from a lovely carer, Caroline, who said that since becoming involved in a support group their life had changed for the better. Their group is at a farm and allows them to enjoy the outdoors.
“Being in such good company has enhanced our lives after being isolated and scared.” “It’s opened up a whole new chapter in our lives”
Then a wonderful film showed made by the group.
The Laverstock Memory Group were up next. This is the group attended by my lovely playmates Veronica and Christopher. They meet in someone’s home and people with dementia meet in one room and supporters in another. They questioned whether a dementia awareness session made businesses dementia friendly and decided not.They were given a pot of money by DEEP to go round local places that they chose to assess how good they were. They then hand out a certificate to good establishments.
Wonderful to hear a local group and all that they’re doing.
Up next was Tony Whitney who supports his wife Donna who is living with late stage dementia of the PCA variety, which is more about visual special issues rather than memory. He spoke of the ‘sparkle’ disappearing in the beginning due to lack of support. Other conditions added to the complexity. The difficult decision of choosing a care home was made more difficult by the inconsistency of care. Many were Institutionalised but he thankfully found one where Donna was made part of a family. Her sparkle returned through good support and good care and she has ‘reconnected’ with the outside world.
“Psychological hurdles and barriers can hinder and prevent us from doing things that are normal. New issues demand new solutions…….”………a wonderful talk by a wonderful man about his wonderful wife.
Finally before lunch Babs and Kirsty from Alzheimers support launched Wiltshires Dementia Roadmap. They called these virtual team members. It was designed with the help of people with dementia…..and looks very simple to follow on the slides.
The one page that stood out was the one that said:
Time for lunch as I was now starting to flag…….lots more wonderful things in the afternoon but I just wanted to sit and enjoy as brain disappearing fast so no more typed….EXCEPT the first speaker was a GP who showed the slides of Alistair Burns and spoke of Living well…..the one phrase I spoke against this morning. I didn’t agree with lots of what he said, but then I’m not surprised……..and he, in a room with many people living with dementia, said Donezepil doesn’t work 🙄 …….but was luckily contradicted by the next speaker, Professor of Research, who said how it delayed declined which they’ve proved……..
After yesterday blog, the last workshop, Dr Simon Manchip restored my faith in Consultants in Old Age Psychiatry. A wonderful talk with humour and challenging current views and practices. I sat through it twice to finish on a high.
Really finished now…
Wonderful event and so glad I was invited.lots of good things happening in Wiltshire…..
I woke this morning to the same banging head I had on Tuesday. So much noise and conversation 3 days running is taking its toll, but today I’m on local turf, no trains to add to the stress, just a friend picking me up. And I was in my own bed last night, so in familiar snug surroundings……..
I was looking forward to today as me and Cathryn were in control of proceedings as we were running our free local workshop on living with dementia and what you can do to to continue to live as well as you can.
I’ve always had a bit of a problem with ‘living well’ as I became aware of it making some people feel worse as they were struggling.they began to feel inadequate as they weren’t living as well as others. But the concept is as individual as each of our experience of dementia itself. So ‘living as well as you can’ is a better vision for me.
I digress – so back to yesterday. I was running the workshop with Cathryn Hart, Assistant Director Research & Development at Humber Teaching NHS Foundation Trust…..Cathryn picked me up at the agreed time and bought me a lovely early Xmas pressie……❤️
and we then trundled into Beverley where we were heading for the Education room at the library. Cathryn is very new to Twitter, so we had a piccie taken of us under the sign: Treasures of the East Riding🤣😂
We arrived to find the tea all ready and waiting……..brownie point for the library……soon people began to arrive and first up was Adeline who reads my blog and whom I’d never met!!….well, that was until she mentioned that we’d met at the Book Festival talk I gave last month🙄 How amazing …..but the amazement continued as 2 people arrived who lived in Spain😳 and they read my blog😳😳😳😳 and happened to be over for the week staying with their son….😱😍❤️. The son was simply going to drop them off but decided to stay as well
We went round the table doing the normal introductions…..care home staff and a care services person from the council attended as well which was so nice and there were 2 people with dementia there as well, which was the most wonderful thing……16 people were there in all – perfect number to be cosy……
We chatted about this that and everything, but me and Cathryn always wing it to fit whatever people want to talk about so people asked me the questions that were important to them. We both said the bits we wanted to say but then it was whatever people wanted to talk about and ask.
Cahryn showed how research can plug gaps in services and Adeline said what a lifeline they were filling that very gap when her husband was diagnosed.
Someone also talked about how they wish we had Admiral Nurses in this area. So I talked about the work I’m doing with Admiral nurses……..I also mentioned the role the hospice could play and not just for end of life.
Adeline mentioned how she’d been looking for a traditional looking watch that comes with GPS – her husband will wear a watch but not the modern type. She’d found one in Spain but it only worked in Spain – so if anyone is aware of anything like this please get in touch and I’ll pass on the detail.
There were endless cuppa teas and the chatter and engagement was wonderful. We exchanged tips and tricks…..one magic one from Adeline around Christmas…..it can be really overwhelming if ALL the decorations go up all at the same time so her friend had the brilliant idea of gradually bringing out the decorations……slowly, piece by piece instead of in one fell swoop…..that got me thinking…that maybe I now need to start putting mine up bit by bit…..any excuse😂
The warmness and kindness in the room made my day and my headache was finally gone.
Connections were made, especially between the 2 lovely ladies whose husbands were both living with dementia
Over a cuppa tea I got chatting with Bob, who has dementia and I realised it was the Bob who wrote a couple of poems that I published on my blog……….
he said the kindest of things……”You’re part of our life now and have shown me how it’s ok to be me”……..you see, this is why I do what I do……to show people they don’t have to be alone with dementia….
We went way over time and could have gone on for another couple of hours but the room was needed, so we had to leave but not before a piccie of the lovely people from Spain along with their new found buddy, Adeline……
