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?

 

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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!). –

 

Another great day with York Minds and Voices – ‘A coming together of equals’

Some time ago Minds and Voices received a visit from Gaynor Brown who was interested in what we did and wondered if she could help establish a similar peer group in the beautiful Craven district in the Yorkshire Dales.

This week we finally visited Gaynor and a whole host of people involved in the local ‘Dementia Friendly Communities partnerships’ in Skipton – I think that’s the new name for Dementia Action Alliance! Gaynor has done superb work and had gathered around 50 or so interested folk including many people living with dementia and their care partners.

Well the MandV gang went down a storm – there’s  a real drive and unity of purpose in wanting to share the message that a good life with dementia is possible. I showed a few slides and the group shared their testimonies in a very natural and spontaneous way. I have said it before but there is a real maturity warmth and a tangible sense of belonging amongst this group that allows them to speak so freely and confidently.

We spoke about our beef with accessible trains and Rita recalled being dragged along a packed train by yours truly before needing a stiff drink.

We spoke about the time we did a consumer testing of the Mecca Bingo in York. Peter reminded us of how it felt like another world. ‘We had no idea what was going on. I could have won thousands and not known!’ Brilliant.

We spoke about the course we have created – for people newly diagnosed with dementia, because so many at the moment of diagnosis feel abandoned and on ‘a cliff edge’. As soon as we mentioned that, all around the room people with dementia spoke up. ‘Exactly!’ shouted Stuart ‘that’s what happened to me’.  It turns out that Stuart is arranging a football tournament so that youngsters can find out more about dementia to break the taboo and stigma they are fed by so many myths and misconceptions. Fantastic.

Gaynor spoke beautifully of her visit to Minds and Voices. We were all moved when she said how welcome she felt and how she was struck by not knowing who was running the meeting; and what a sign of hope this was that people could meet genuinely as equals setting their own agenda and not be told what activity to do, when to leave, or what to say.

This message was put into stark contrast by what I can only describe as an attempted hijacking of the meeting by a lady who spoke about the group she runs. ‘we don’t talk about dementia in case it upsets them. we do bingo for them and take them out’.

We were delighted that there were people who enjoyed that input too but Eddy pointed out with some determination ‘Well, we DO talk about dementia and we are comfortable talking about dementia and are not ashamed of having dementia’.

Horses for courses, I suppose, but what we have found is that when people come together as equals, laughter happens, socialising happens, relationships build and support and activism soon seems to follow! Find out more about the UK network of Dementia Voices here

 

A GOOD LIFE WITH DEMENTIA – a course for people newly diagnosed in YORK

 

Want to find out more about your diagnosis of dementia?

A GOOD LIFE WITH DEMENTIA  is a free dementia course for you.

It will give you the opportunity to address questions such as:

  1. What do you understand about your dementia?
  2. Can I live well with dementia?
  3. What are my rights? And is it always my fault?!
  4. Where can I get help and how do services work?

We will offer you a home visit to have the opportunity to meet the tutors prior to the course and to express any particular learning needs or questions you might have.

Course Dates:

Tuesday 10th April

Tuesday 17th April

Tuesday 24th April

Tuesday 1st May

Tuesday 8th May

Tuesday 15th May

Monday  21st May (Graduation Party)

For more information and to enrol, simply contact either

Damian Tel: 07927 405 854  e-mail: dementiafriendly@outlook.com