A Good Life With Dementia – our Top Tips blog 3/3

The second Good Life With Dementia Course concluded today. We put together all the hints, top tips and shared experiences. there are some absolute corkers in here. – We don’t sugar coat dementia – but we’re still allowed to have a laugh!

A Good Life With Dementia – TOP TIPS

Coping with symptoms

  • Dogs have been a huge help. I take them out when I want to growl!
  • Don’t give up on things even though it is difficult.
  • Keep doing what you can rather than bemoan what is lost.
  • I have 7 folders in my house – one for each day of the week to sort out my diary … ‘In theory, I’m perfect!
  • Our senses are affected too. Hearing, Vision, Balance. ‘Talking Sense’ by Agnes Houston is an important resource for all.

Adapting to the world around

  • Looking for familiar landmarks such as the river or the Minster helps when feeling lost in York.
  • What helps me is plenty of reading and alcohol-free lager – just the best invention. I can drink it all day long and still not get pissed!’

Impact on relationships

  • Living alone means there is no-one around to move things. After 50 years of marriage that is not an issue for E. whose hubby has never lifted a finger in the house!!!
  • Trying to treat each other the same is a good starting point. Cut out the ‘You Can’t’ – We work together
  • ‘I can’t get over how helpful this has been. Without it you wouldn’t realise properly the implications of being diagnosed with dementia’

Physical tips

  • Move more, sit less, smile and be happy!
  • Get up every 20 minutes – stop using the remote control
  • ‘Walking – that’s the one for me – Big Style!’ We can build up to 150 minutes of moderate exercise per week (5 x 30minute sessions per week).

If you want to find out more about the Innovations in Dementia Good Life model contact me Damian@myid.org.uk

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A Good Life with Dementia 2019 – What We Learnt blog 2/3

Over 6-8 weeks people living with dementia as course tutors and people living with dementia as learners spent time learning and sharing together. – this is a new way of learning at a pace and in a place that is comfortable, welcoming fun and non-judgemental. From all our sessions, here is a list of what we learnt.- Start spreading the news.

A Good Life With Dementia 2019 – What we Learnt

The Course

  • Our course matched the questions of the learners – Of Course!
  • We are all experts by experience. Professionals can only learn so much from a book – that’s why we put this course together – who better to learn from?
  • We can share our experience to help each other avoid some things and find out about others.
  • Our care partners agree that properly listening to people with dementia is great and really beneficial too.
  • We’ve all got something in common – a hidden disability- and we can learn from each others’ experience.

About Dementia

  • Even the experts aren’t experts. Currently the most certain thing about dementia is the uncertainty
  • What is dementia? – It’s a nuisance.
  • It’s something to do with brain cells that can’t be re-capacitated.
  • Our experience of symptoms are all very different.
  • Challenging behaviours- that’s what other people think we do!
  • There is a physical organic process going on and IT IS NOT OUR FAULT.
  • You might not lose all 100 billion brain cells at once, but if you lose the ones that make you leave your shopping on the bus, it’s not a help.
  • It’s a bummer of a diagnosis but if on top of that you have silly arguments and tensions with your nearest and dearest well that is too much and unnecessary.
  • Dementia – it’s nothing to be ashamed of

The impact on our relationships

  • Sometimes partners with the best of intentions can make us get in a pickle
  • I wish my wife was here to listen. Society doesn’t realise the impact of dementia.
  • Readjusting to having dementia is a real and current difficulty for us as couples.
  • Dementia has meant we do more things together now as a couple.

Adapting to the world around

  • ‘Other people can be patronising – even friends. They can’t seem to communicate with me well.’
  • Once the medics have done their medical bit, the next step is to adjust to living with that diagnosis in what can be a very disabling society.
  • There is a real benefit in signing up for research projects
  • The best activity is the one you will do!

A good life is

  • To be who you are, to be seen as you wish to be seen – like the opportunity to get out with the dogs for a blow-out.
  • To be able to sail the ship of life into a safe harbour
  • To be able to flaunt it if you’ve got it! – and to carry on as normal.
  • To still be treated as an individual.

And two important points

  • There is no danger of us sugar-coating dementia. We know that anyone of us could have moments where it all goes ‘wibble’ – and that’s really upsetting.
  • We start with nothing, we end with nothing, everything in between is sheer profit!

A Good Life With Dementia Class of 2019 our manifesto

Today the second ever Good Life With Dementia course came to a celebratory conclusion. Designed by and delivered by members of York Minds and Voices – all people living with dementia. I am delighted and privileged to have helped facilitate. Over 7 weeks we have shared top tips; we have drawn up a long list of what we have learnt and we have detailed what we need from those providing services and how people with dementia should be involved at every level of that. Given that more elections are on the horizon here in the UK, here is our latest manifesto. PROVIDERS TAKE NOTE.

A Good Life With Dementia 2019 – Our Manifesto

Our potential

  • We are all experts by experience. Who better to learn from? Professionals can only learn so much from a book. Include us too!
  • We can share our experience to help each other to avoid some things and find out about others.
  • It’s so good for us to share information about our own symptoms instead of someone standing and delivering a pile of facts.

Around the time of diagnosis

  • Getting a dementia at a younger age is traumatic enough, but to have that take so long is doubly frustrating.
  • There is a lot of immediate attention then the contact stops – it’s baffling.
  • Services are providing the wrong things and are not listening to what we are saying we need!

Post Diagnosis

  • If we’ve got dementia, we need it written down so we can remind ourselves.
  • We need to be given simple information. No-one gives us this. It’s, ‘you’ve got dementia – now scram!’
  • We should not be fed doom and gloom and no solutions.

The impact on our relationships

  • It affects us all and we need support as a whole relationship.
  • How much help from services have we received in relation to relationships and the impact on the whole family? – NOTHING!
  • If we got this help early, then it might mean not needing to spend so much on responding to crises.
  • In cancer the whole family and relationship side and all the psychological support is addressed -but not in dementia. That makes us sad.

The world around us

  • Once the medics have done their medical bit, the next step is to adjust to living with that diagnosis in what can be a very disabling society.
  • There is a real inconsistency in how we come across services and access entitled benefits.
  • Other people can be patronising. They can’t seem to communicate well with us.
  • We must not be dismissed with ‘What do you expect? You are old.’
  • And we cannot stand ‘You don’t look like you’ve got dementia’!
  • We have created a safe space here for people to be themselves in a non-judgemental environment.

Our Rights

  • ‘Dementia rarely comes alone’. We have a right access to appropriate healthcare when needed.
  • There is stuff we can do to compensate for some difficulties, and we have the right to carry on doing what we like.
  • We have a right to a diagnosis, to know about it and to have it written down too.
  • We have the right to be able to then get on with life with as equal an opportunity as anyone with or without a disability.
  • We have a right to access our entitled non-means tested benefits. These should be amongst the first things offered.

SO, providers, supporters please use your nouse. Put on Good life courses; create a space for shared learning amongst peers and a safe space for people to take on board the diagnosis; respond to the impact on relationships, create much more self management and end the doom and gloom without solutions.!

the next blog will cover ‘What we learnt’!

For more info on the Innovations in Dementia  Good Life With Dementia model contact Damian@myid.org.uk. Meanwhile here is the class of 2019!

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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

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.