Re-Blog 2: – time to collaborate in academic work

Comfortable

This is a blog I posted recently on the Innovations in Dementia site, but as  I’ve been notified of one or two new people flooding in to follow my blog, I thought  i’d re-post it here.

I’ve just been reading some excellent material by Swarbrick et al (1) and Morbey et al (2). It covers work that has been going on to ensure meaningful involvement and inclusion of people with dementia as co-researchers rather than as subjects of research. There is a powerful recognition of the need for a move away from ‘researching on’ to ‘researching with’.

This has been recognised too through an award from the National Lottery Community Fund for the Innovations in Dementia project, Dementia Enquirers – where people with dementia within DEEP (the UK network of Dementia Voices) shall be equipped to develop their own research questions; lead on their own research ideas; and create their own research methods.

It sounds ambitious and it is. Scary too! The language of academia has evolved and developed over centuries – not, as some critics may believe, to bamboozle the uninitiated and to maintain a magic, a mystique and an air of superiority and uber intelligence over the rest of us mere mortals – but rather as a short hand. It may be hard to believe to a lay person like me, but a lot of those long words are in fact a short hand – a language of convenience amongst academics – actually to be succinct!

There is a growing movement of people with dementia with a new (or a louder) voice that is now seeking, rightly, to take ownership of research under the ‘nothing about us without us’ rallying call. Indeed, as my friend Paul, a member of York Minds and Voices, said several years ago now, ‘If you’re doing research about dementia and you don’t include people with dementia, then you’re wasting your bloody time’.

But it’s not that simple. Entering this world, deciphering studies and literature already created in essentially another language, with a limited capacity to learn this new language, is not going to be easy.

I speak ‘pidgin academ-ese’. Certainly not fluent, but good enough to get a point across, ask a question and try to plan something or test out something.  But I’m still bamboozled by a lot of academic reports I come across (just look at the title of the two articles I have referenced at the start of this piece! – an accessible modified Delphi survey for core outcome set development.  ????). I skim quickly to the executive summary or the conclusions section in the hope there is a simple message or finding that I can cling to.

But from the point of view of the academics, one can imagine the reaction to a bunch of potential upstarts entering their domain and expecting to be understood. Akin to a lobster-coloured Brit on holiday in the Costa Brava landing at the bar, shouting ‘dos bieres por favour, garcon!’

One can understand a trepidation at no longer being amongst those peers who ‘get’ their shorthand created over centuries; that they might be slowed down by the pain of having to accommodate a new cohort in their midst.  But accommodate they must!

My kids tell me Latin is dead and look to the heavens when I state the contrary, but I must point out that ‘accommodate’ is indeed from the Latin ‘to make comfortable’. So, making comfortable is NOT a pain at all and that goes for both sides.

The inclusion of people with dementia in research is not about usurping power or knowledge, it’s about collaboration (from the Latin, ‘working together’!). No-one expects someone to enter a new culture and to speak the language fluently, nor should that language or culture be disabling. But we can find a comfortable space.

I got thinking about an equivalent ‘comfortable space’ I came across years ago, as a young nurse in learning disabilities. People with communication difficulties were not excluded nor expected to be fluent, but the brilliant and simple MAKATON language system (3) helped create many positive connections. This method involved the use of signing only key words in a sentence to facilitate communication.

So, we must ask ourselves, what is the MAKATON equivalent for people with dementia to engage, to ask a question, to test a question, to explore ways of measuring and carrying out those tests and questions? The Dementia Enquirers project will no doubt go a long way to contributing to a necessary and an inevitable change in the language around research.

We should all look forward to more comfortable times…

By Damian Murphy, Director, Innovations in Dementia.

(1) Swarbrick et al (2016) Co-producing a model of involvement and engagement in research (Innovative Practice) Dementia 0 (0) 1-8

(2) Morbey et al (2019) Involving people living with dementia in research: an accessible modified Delphi survey for core outcome set development.
https://doi.org/10.1186/s13063-018-3069-6  accessed 12/02/2019

(3) Makaton: https://www.makaton.org/aboutMakaton/ accessed 12/02/2019

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A few re-blogs 1: the need to be CRYSTAL CLEAR

tTis is a blog from my colleague Steve Milton – a fellow director at Innovations in Dementia  It really is time to put an end to inaccessible jargon.…… If at first you don’t succeed………smash it to bits with a hammer

I had just moved into a new house in Tottenham. There was a Large Swedish Home Furnishings shop nearby, and I was keen to try out the idea of flat-pack furniture for the first time.

I’d get back with my large box. Unpack it.

Lay out all the bits of wood, screws, plastic plugs and metal thingamyjigs.

Then I’d open the instructions.

That’s when my problems would start. The instructions appeared to have been written in Swedish, then translated into Urdu, then from Urdu into English.

By someone who spoke no Urdu, no Swedish, and certainly no English.

Routinely my best efforts would result in tangled mess of ill-fitting parts that were destined to fall victim to my heartfelt DIY motto:

“If at first you don’t succeed………smash it to bits with a hammer”

In fairness to Large Swedish Home Furnishings Companies – their instructions have improved enormously in recent years. I can honestly say I haven’t smashed any of their stuff to bits with a hammer for, ooh, ages.

I wish more companies would listen to their customers complaints though, and really think about how they explain things.

After all, we are much more likely to buy something or use a service if we understand what it is and how to use it. You’d imagine companies and organisations would be falling over themselves to be clear in their messages.

But no. From bus timetables to self-service checkouts in supermarkets we are bombarded by messages and instructions that seem to be purposely designed to make our day just that little bit harder.

“UNIDENTIFIED ITEM IN BAGGING AREA”!!!

Excuse me?

“UNIDENTIFIED ITEM IN BAGGING AREA”!!!

The merciless torturing of the English language aside, what on earth does it mean, and what I am meant to do about it?

Of course, most of the time we can work out what things mean.

We just damn well shouldn’t have to anywhere near as much as we do.

…..and it’s not just one thing of course – as we go through our day we encounter these little challenges over and over again – each one of which adds another little bit to our ‘cognitive load’. Each makes our day that little bit harder, bit by bit, message by message. They might seem like little things, but together they weigh us down.

The onset of dementia can make it even harder for people to translate bad information. This can make it harder to people to get out and about, and to do many of the things the rest of us take for granted.

These can be very real barriers for people.

  • The badly designed bus timetable that meant someone got on the wrong bus and got lost, or went home having failed to work out what to do next.
  • The shrieks of outrage from the self-service checkout, devoid of either meaning or direction that sent the would-be customer scurrying out of shop, mission unaccomplished.

We know what can happen when we begin to struggle, or fail in certain tasks. It means we are less likely to risk failing again, and stay home where it is safe. We disengage.

Many people with dementia have told us that a single incident like this can send them into a tailspin and have a huge impact on their confidence in their ability to interact with the world. They disengage.

How much easier would life be for all of us of if things were just a little bit clearer?

This is why, a few years ago we worked with a small group of people with dementia to write guidelines on writing dementia-friendly information.

Since then we have used them to produce dementia-friendly materials for lots of events and organisations, from conferences to lay summaries of academic papers.

What is very striking though is that not only do people with dementia find these versions easier, so does everyone else.

We first realised this when we produced a dementia friendly timetable for a conference. We had to go across the road to a photocopying shop for more copies as they had all been snaffled up in preference to the main conference timetable.

We can see the impact we can have by making things just a little easier for everyone.

That is why we are working with people with dementia on a new service called Crystal Clear.

Crystal Clear will help organisations to produce information that is easier for everyone to understand.

We have already started to work on some documents for another dementia organisation – and people with dementia are proving hugely insightful into the changes that need to be made.

When we are finished, I want to revisit the guidelines we wrote about dementia friendly information. They were written a few years ago, and things have changed. We’ll be involving the whole DEEP network in a discussion about the challenges that people face in understanding written information – and this will help us to provide better guidance to others.

We believe that people with dementia have unique insights and understanding of how to make the world an easier and better place for everyone.

My dear friend Lynda Hughes once said to me “people with dementia have a wisdom that I don’t see anywhere else. They can save the world”.

Sometimes as the messages from mobile phones, computers, video screens and the Daleks inside self-service checkouts swarm around my head I am reminded how right she was.

Now where’s my hammer?

A Good Life With Dementia – a celebration

No doubt our Wendy will be blogging about the course today so here’s a brief one from me. We all met together tutors and learners yesterday and reviewed the course. We reviewed all the things we’d learnt, some magic moments and agreed upon a statement of learners as a resource to be put out there. it’s a mixture of learning points, rights and expectations from the world around. Courses elsewhere will have their own charisma and produce different resources – but here’s to the Minds and Voices and especially our learners:

A Good Life With Dementia – Our Statements

A diagnosis of dementia is not the end – it’s the beginning of something.

We all have good and bad days – like anyone

Although brain cells die, we can still hold an equal place in our communities;

Although brain cells die, we can still hold an equal place in our relationships

Although brain cells die, we still have plenty in reserve and life goes on.

Dementia is not our fault

How else will people know how we are feeling if we don’t talk to one another openly – it’s a two-way thing.

So what if we repeat things.

Respite is not about moving out it is about a healthy space for all

It is not the dementia that makes us suffer

Dementia friendly is just about being friendly

The world is a better place for walking – use it or lose it!

Diagnosis causes a huge dive in confidence – bear that in mind and don’t rub it in!

Joining research projects is so important. It keeps us busy and can help provide a legacy for those who come after us.

If we can’t access what we’re entitled to because of our dementia, then that is discrimination

I’m still me – We have a right to be ourselves

We are more than a label or a case on somebody’s desk

We have a right to access meaningful and practical support after a diagnosis and not to feel abandoned

Learning amongst equals is a better way of learning

Learning and sharing amongst equals makes us happy

We also produced a local ‘first steps and key numbers’ document to add to local information provision based on gaps in provision that the learners and tutors identified

Throughout the course there were so many moments that justified it’s creation.

The dive in confidence following a diagnosis was a theme throughout the course. The huge impact of diagnosis on someone’s confidence cannot be underestimated and this course was about counteracting that. Our learners present on the last day mentioned the new and renewed confidence they have and the confidence their carers have in them too! A Good Life with Dementia is about recovery and discovery in so many ways.

There is a huge gap post diagnosis – so often the feeling of being on the edge of a cliff upon receiving a diagnosis. Doctors do the necessary medical thing and break the news. Some are better than others but after that the real need is to learn about living in the new reality of a diagnosis of dementia. Most information programmes are aimed at helping carers to cope. A Good Life with Dementia is a course tailored to help people with dementia cope. It’s co-produced and delivered by people living with dementia and who better to learn from about living well with dementia than people doing just that?

 

A Good Life with Dementia session 6 – Rights

Week 6 of ‘A Good Life With Dementia’ – a course FOR people with dementia BY people with dementia. This week the session was on Rights. Not the easiest of subjects to grasp in a short session. Luckily the issue of rights had pervaded this course. We were able to draw on last week’s discussion on the inconsistency in access to relevant benefits and services.

Peter one of our tutors, said, ‘People don’t do what they’re entitled to do’ – no surprise given the massive dive in confidence following a diagnosis that our tutors and learners have shared on this course. Wendy always says – ‘we don’t know what we don’t know’. There is a duty on others to keep people informed. – and a right to be kept informed.

Although I had prepared a powerpoint with a few extracts from the DEEP ‘Think Tank’ Submission to the UNCRPD , the best conversation as usual came from the sharing of experiences amongst tutors and learners.  As usual there was a healthy balance of humour too and some powerful contributions, which actually again tapped into the original main messages of the course as a whole – to go from sad faces to happy faces; and to learn and  share amongst peers in a non-judgemental environment.

The right to be involved in ensuring commissioned services reflect real need of people with dementia was very clear. We mentioned too the clinical  target driven approach in the local CCG – targets neither set, nor agreed by people with dementia! – and diagnosis rate targets that are meaningless without real, coordinated, timely and practical post diagnostic support, information and advice, summed up brilliantly by our tutor, Peter sharing his experience thus:

“I know it’s difficultYour brain goes in to hibernation (not sure mine’s coming back out!) but they tell you that you have dementia, then it’s ‘Ta-ra, See Ya'”

– the same message we have had consistently and yet another reinforcement of the rationale for this course – to counteract that edge of the cliff helpless scenario.

We stayed on the right to meaningful support and H shared how so often he encountered a real lack of understanding and fear of dementia amongst front line staff. From his own background in health he knew that ‘being sat in front of a video’ was a meaningless ‘tick-box’  exercise.

We acknowledged that there are some excellent professionals and specialists out there but we all agreed that any training should be delivered by or alongside people with dementia and that people with dementia should be included in creating that training. – that is certainly how this course came about!

It was nice too that Rachel our student nurse found this way ‘a better way of learning’

What came out most from today’s session was the right to be different, to be regarded on my own terms. this was typified by L’s excellent recall and recital of the Jabberwocky to great applause

If services continue to just go around measuring deficit (‘aah yes deteriorating as expected’) then people are being measured by the wrong cup. There is a right for one’s own self construct to be acknowledged. Unfortunately we are still in a culture where people with dementia often have to rely on others to bestow personhood upon them. Amongst peers L has flourished. (A particular aim of our course was to provide the opportunity to spend time in a non-judgemental environment). The fact we can celebrate his poetry and acknowledge his PhD and other achievements has been really huge in helping both him and his wife visibly relax over the weeks.

Rita our tutor was on top form today too and revelled in the company. She brought up the importance of having a collective voice and suggested if the need arose, if anyone needed to go into a care home, we should all move in together!!  The idea of the entire Minds and Voices crowd moving to a home together was hysterical and brought a  collective ‘they wouldn’t know what had hit them!’

Peter had us all welling up (including himself)as he summed up the session and the course perfectly.

‘I’d have gone completely off the rails without the opportunity to share and come together with others having the same experience.’

‘Coming back here and sitting and discussing with folk who feel the same way is… well I’m just so fortunate listening and learning together – I can’t find the exact word .. but well

It makes me feel happy’

Well that certainly goes a long way to answer the question of what is a good life.

A great lesson to end on.

 

A Good Life With Dementia Session 5 – the Market Place

The learning continues apace as we came to week 5. We looked at what’s available or what SHOULD be available following a diagnosis in York! The big message today was that services should fit your need rather than you fitting into them. So it was to challenge both our learners and also the guest ‘stallholders’ of our ‘Market Place’

This week we met:

A representative from Older Citizen Advocacy York (OCAY)they provide FREE advocacy including support with filling in forms and support with any area of difficulty.

One of our Local Area coordinator’s (LAC) for the council. Her job is connecting people with what’s on locally – and we found out there’s a whole load of stuff.

The regional coordinator from the excellent Join Dementia Research. He knows about a whole range of research projects going on across the region and can match our learners with projects of interest. This was great as research and the benefits of research has been a running theme in this programme so our visitor was pushing on an open door for volunteers to sign up!

‘It’s not all about laboratories and white coats – and certainly not about people poking about in your brain’, as B rightly said!

It’s good to know that ‘A Good Life’ is bucking the trend through fuelling an enthusiasm for research participation. Our visitor said that ‘usually staff don’t want to approach people about research‘. This is sadly consistent with the active resistance we encountered locally for referrals to this programme 🙁🙁 .

As H said,Joining in research gives me something to focus on and a chance to leave a legacy for those people yet to be diagnosed’.

The head of dementia services at City of York Council (CYC). She told us about Independent Living Centres if you need extra care in the future and also about any social services for older people in York.

A worker from Dementia Forward – a local dementia charity who can signpost you to other services and provide visits to chat.

A representative from York Healthwatch. Healthwatch provide a public voice to raise any concerns about health services you might have. Healthwatch have also produced a ‘Dementia Directory’, which was handed out on the day. (An excellent resource which came out of a year long consultation with York Minds and Voices!)

As well as finding out what was available we discovered also what was NOT so easily available! From session 1 our learners had requested information on benefits and a possible reduction in Council tax. NONE of our guests came armed with information on that. Including those from the Council! I did though!

It’s shocking none of our learners over 65 had yet been informed of these entitlements, despite being diagnosed for some time. And worrying that only OCAY seem to provide practical help with form filling. In the market place we all went straight to make appointments with the lady from OCAY!

It seems that there was a distinct lack of awareness amongst our guests of the main benefits available when working and supporting people with dementia – most could offer signposting (TO WHOM!??) betraying a real lack of confidence in this area or a deliberate policy NOT to undertake such work. Incredible really given it was always a good ‘foot in the door’ being able to help people access benefits or get a few quid off the council tax. Lessons to learn for local providers.

The large and confusing amount of links and numbers was coming too thick and too fast for the notes that Stewart our tutor was trying to make and he rightly pointed out, ‘All this needs to be put in one place’.

From the discussions at this session we will be putting together a short list of useful numbers and first steps that can help future learners and that can also show providers what information THEY should be giving – and HOW they should share it  – Learning AND resources!

In Summary we found out some good information and some gaps in what matches the agenda and needs of people living with dementia. As Paul said ‘if we can’t access certain information because we have a dementia, then that’s discrimination‘. It certainly is and Rights is the topic for next week’s session – We shall keep you posted!

 

 

 

 

 

 

A Good Life with Dementia – a course FOR people with dementia BY people with dementia: Session 4

This week we held the 4th session of ‘A Good Life with Dementia.  A post diagnostic course for people recently diagnosed with dementia. It was created by members of York Minds and Voices a peer forming part of DEEP the UK network of Dementia Voices. It is being delivered by people living with dementia as course tutors.  If you want to catch up you can read about session 1 here session 2 here and session 3 here

Our learners week by week are visibly much more relaxed and talkative.

So having ‘sorted’ relationships within the family and at home today we turned to focus on adapting to the wider community and the world beyond.

H mentioned that oft heard unwelcome phrase we have all heard ‘You don’t look like you’ve got dementia’ – ‘What is a person with dementia supposed to look like?’ is a great response!

We spoke about the language people use around us. ‘Suffering’ is often heard. Everyone in the room was asked if they felt they were suffering. There was an emphatic ‘No’ from everyone –

As Paul our tutor mentioned ‘it’s tough luck and their problem if other people can’t understand us!’ and B rightly mentioned, ‘It’s not your fault!’

We spoke about whether people with dementia should need to wear badges or labels to reveal their diagnosis to shopworkers or rail station staff, for example. A great debate!Although some more outgoing people would be happy to show a card, there was a real consensus in the room that people should be helpful anyway regardless of any disability. 

The Minds and Voices favourite hardware shop, Barnitts was shown on the screen. – a real minefield, an assault on the senses, a labyrinth of corridors and entrances. Nevertheless it’s great because there is ALWAYS someone to help, direct and fetch stuff. Everyone’s confused going in there whether living with dementia or not! – and the staff know it. Dementia Friendly is just good customer service! 

H spoke of how his workplace supported him following his diagnosis, so he was able to carry on. It was a pity the charity shop could not be so flexible for B when wanting to continue to volunteer in the shop. We’ll be looking more closely at rights later on in the course

Then we spoke about continuing to do things we enjoy! It was a pleasure and great fun to welcome Dr Alastair , who put us through our paces – with exercises on stamina, flexibility and balance. B was off the scale! and that seemed to give her a good boost – and rightly so.

Paul mentioned that ‘The world’s a better place for walking’

As well as assessing us, Alastair gave us some good pointers. and the simple message today was MOVEMENT IS KEY. We found out about a free exercise session run by York St John Uni and  learners also had the opportunity to sign up to some great research looking into how dementia might affect mobility.

H encouraged his peers to seek out as much research participation as possible. –  It keeps him going and gives a real purpose too.

So learning from today –

it’s not the dementia that makes you suffer!

people should be helpful anyway even if they can’t see our disability. 

It’s not your fault!

Dementia Friendly is just good customer service! 

Movement is key

 

 

 

 

A Good Life With Dementia – a course for people with dementia by people with dementia – session 2

Today we met for the second session of our course – A Good Life With Dementia. Just a reminder it was created by members of York Minds and Voices – a group of people living with dementia in York. They form part of DEEP, the flourishing UK network of Dementia Voices and I’m just glad to be associated with them.

Members of Minds and Voices are also delivering the course as tutors to people with a fairly recent diagnosis of dementia – providing a space to take on board the diagnosis at a pace and in an environment that is non-judgemental, supportive and fun. One of our tutors, Wendy wrote about session 1 last week here so it’s my turn.

All our learners returned which was a good start! We also welcomed T for the first time too. Our brilliant tutors today were Liz Eddy and Stewart who were all so welcoming and inclusive – this has always been a particular aim of this course – to provide that non-judgemental environment in which to share and learn.

Today was themed ‘What is Dementia?’ the lay presentation of dementia was something we initially thought would be presented by a local doctor or nurse. What worked much better however, was Liz’s contribution at the beginning ‘It’s about loss of nerve cells in the brain – and Liz’s contribution at the end. ‘Let’s carry on regardless!’

In between, the conversation, (following the simple questions of ‘What do you understand about what’s happening to you?’ and ‘What are some of the symptoms you experience?’), flowed and included an exchange of experience, questions and answers around medication, sensory challenges, balance, sleep, attention span, hallucinations and technology. So much better than presenting a list of symptoms and being bombarded with info about stats and prevalence. I had prepared a simple powerpoint with a few prompts around common symptoms – but that was very much an underused safety net.

In our conversation about medication L pointed out that it had enabled him ‘to be my new self’. How true! this follows on from the powerful message from last week that this is the beginning not the end of something.

T explained his diagnosis of Lewy Body Dementia as ‘Parkinsons with frills’ – Fantastic and so succinct too. Another example of people with dementia setting the agenda and the terminology that best suits – language that is simple and to the point. Stewart described how when he asked his doctor daughter to explain dementia to him, he couldn’t understand a word she said! Liz, however was much clearer -‘Well it’s brain cells dying, isn’t it?’

K shared a discharge letter from his consultant to his GP. Essentially it said: ‘Diagnosed Alzheimer’s disease – Did not tolerate the medication – Has a supportive family – Informed him he could some benefits’ – No doubt well-meaning, but K said that following the letter ‘You’re in the process (of living with dementia) but you’re left with no connections to anyone.’

Eddy, as tutor, shared how he had  experienced something similar. He said it was like, “you’ve got dementia, now scram!” – Another reason for this course –  But following the medical input, we are missing that logical handover for individuals to access information and opportunities to learn about how to live well with this diagnosis. Currently people with dementia are being left high and dry.

As in session one both learners and tutors learnt from each other. B mentioned that today was really helpful because ‘I was able to relate to other people’s experiences and say to myself “well that’s what i thought” because before I was out on a limb, thinking it was just me’

K asked about whether the brain could recover. – It certainly has great compensatory powers – and although a dead nerve cell cannot recover, we at Minds and Voices (and a key aim of our course) believe in how coming together and sharing learning can help recover a sense of belonging, purpose and a place in our homes and communities – so often put at risk by a diagnosis of dementia – or more rightly by a disabling society.

It was great to see how enthusiastic L was in saying he will be back next week. We look forward to it too!

 

Next week – ‘adapting and accepting’ (with those around you!). –