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!). –

 

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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

 

SERVANTS AND MASTERS – time for a little humility

I’ve been thinking a lot about involvement, having observed a lot of tokenism recently and having had time to reflect on a range of questions in a brilliant community of enquiry course with the Wales School for Social Care Research.   One question we looked at was how much ownership of practice and policy do people with dementia have with regard to services they receive?  Then, as someone who could only ever do languages at school, my Latin of 35 years ago kicked in, and got me thinking about this simple question:

What is a service?

It comes from the Latin ‘SERVUS’ – which means ‘slave’ or ‘servant’.

Who in dementia care are the masters and who are the servants? It should be obvious. If you are providing a service then you are the servants. To what extent are service providers really responding to their masters? Only last week I noticed a county council putting out a tender for ‘a sitting service’. (Hopefully the implied infantilization in the very title does not just sit uncomfortably with me?) I can’t imagine the masters of this service being people with dementia.

Again, I ask, how much have we really listened to our masters? Our customer satisfaction surveys may tell us we’re fantastic but how valid is a snapshot tick box PR exercise, when thinking about what really is on the agenda of people with a dementia? We still encounter so much ‘doing to’?  Day care, Respite, ‘Sitting’ services, and Dementia Cafes tend to form the usual suspects of service ‘offerings’ these days.  They are widespread and, if not well-led, increasingly ill-fitting and tired.

People with dementia are only recently getting the opportunity to say ‘Oi! – we are masters too’.  There are now over 90 independent peer groups that form DEEP, the UK network of dementia voices. My colleague brilliantly reflected upon the nature of DEEP today rightly pointing out that people with dementia are still largely reliant on OTHERS to bestow a certain status upon them – and then only fleetingly, conveniently and selectively chosen to feed into the agenda of those others. This relationship needs to be flipped on its head otherwise it denies the needs (and rights) of people with dementia (the masters) to be heard on their terms. Time for a bit of humility.

I was at a recent gathering looking at the accessibility of all kinds of transport across Yorkshire. Representatives from rail, taxi, and bus companies mixed with people living with dementia and other interested stakeholders. Transport representatives said they felt euphoric and amazed at what they’d learnt from the contribution of people with dementia. BUT WHY SHOULD PEOPLE FEEL BLOWN AWAY IF SOMEONE WITH DEMENTIA MAKES A TELLING CONTRIBUTION? It’s an indicator of just how far we still have to go for the views and opinions and capacity to contribute of people with dementia to be recognised amongst the mainstream.

Having said that, tokenism on inclusion is rife even amongst those working within the field.  I witness this regularly – and I may be guilty of it myself. Many carry that inner filter which says -‘I will include you in this process but really I’m not sure that you can contribute that much’.  Examples can range from small interview panels ‘including’ a person with dementia when successful applicants have already been decided (true!) to national strategy documents pre-written and drafted paying lip service to real inclusion of the voice and opinions of people with dementia (you know who you are!). It’s a filter which says ‘I’m the master here’.  I’m sure many of you reading this will be able to cite many such occasions. Time for a bit of humility.

The voice of our masters should not be so hard to find.

So how can we respond to people with dementia feeling as if on a cliff edge after receiving a diagnosis of dementia and a ‘follow up’ appointment in 6 months’ time?

How can we support couples stuck in draining toxic relationships as they fall into the many traps that dementia sets between them?

What can we do more of when Elaine tells us she’s got the untidiest house in York because she’s never had such a busy and activist social life since finding her local peer group?

Should it not be our masters who decide what constitutes ‘Dementia Friendly’ rather than a sticker in the window or a badge on a lapel?

Indeed, should it not be more people with dementia delivering Dementia Friends sessions – or are we too preoccupied with getting bigger numbers and not much more?

What should we do when our master asks, ‘if she wants a break, why should I be shipped out?’

The answers to these questions are already out there in innovative approaches, born from consultation and interaction with our masters. Opportunities to listen, involve and respond abound virtually (eg via the raw and real Dementia Diaries https://dementiadiaries.org/ , the aforementioned DEEP website http://dementiavoices.org.uk/ ,  and a range of personal on line testimonies) and also in your own communities, work places and neighbourhoods. Someone asked me a question today, ‘Who has the last word on a person’s safety, control or freedom?’ My response to this difficult question was that perhaps we should ask ‘who has the first word?’ Time for a little humility, time to truly listen to our masters.

Servi boni aescoltant magistris

Rights to get out and about – an open letter to Rail providers and the potential new rail ombudsman

In my role as co-facilitator of York Minds and Voices DEEP group, i am hijacking my blog space to post a letter to the office of rail and road, to the rail delivery group and the department for transport as it is hellishly difficult to find an address to write to on their sites, which have a 900 character limit only.- no good for someone as wordy as me. though this is something we could all have a look at…

Dear Sirs,

Rights to get out and about by rail

Greetings from York Minds and Voices. We are a York-based peer support group of people living with dementia. We promote a message that people can live well and better, regardless of a diagnosis of dementia.

Earlier this year we participated in a national workshop where we discussed the rights of people with dementia to get out and about. We learnt that article 20 of the UN convention on the Rights of People with Disabilities (UNCRPD) clearly states that everyone regardless of disability has an equal right to get out and about and mobilise with choice of when and where they can go at an affordable price. It got us thinking about a previous rail journey we took with Transpennine Express (TPE) to Manchester.

One of our group of about 15 used her wheelchair to access the station and to get on to the train. We identified which carriage had all our reserved seats. We were told, however, that wheelchair access was only via one set of doors on the train. This was 3 carriage lengths away.

We believe we all had a right to sit together in seats that we had reserved. We subsequently met with TPE, and sought clarification amongst other things on:

  • Why they only had one accessible doorway when another member of our group also had to use a ramp with her walker to access her seat at the opposite end of the train?

Charlie from TPE was great and happy to help arrange a ‘supported journey’ for our group on a trip to Scarborough at the end of August.

On that trip we encountered exactly the same problem! It was generally agreed that the trip to Scarborough was more of a ‘witnessed’ journey than a supported one as Charlie saw for himself the ordeal that some of our members endured having entered the train via the only available ramp to travel along a packed and moving train again. You can read more about our trip to Scarborough here from Wendy one of our members here

We felt that more could have been done to support us in gaining access to our seats – knowing in advance that about 20 people would be waiting to get on that carriage at York.

However, we still had a question about the type of doors and the ramp access being limited to one set of doors.

o   When they came to see us, TPE mentioned that new trains would have a single door at the end of each carriage – which would mean any ramp could be used to help people on to trains (as with other carriers).

o   Their recent message seemed to refer to the same double doors being used for access but situated a little more centrally on the train. This is still not meeting the needs of passengers who use wheelchair/walking frames to get on the train before going to their seats.

On TPE’s advice, we agreed that we would share our experience with agencies such as the Office of Rail and Road, the Rail Delivery Group and the Department for Transport to flag up this general accessibility issue and also to explore how we might support you to better support all potential passengers living with dementia in matters that are clearly Disability Rights Issues. We could support you on a national level, as there are over 90 groups like ours UK wide and together we form part of DEEP – the national network of dementia voices (dementiavoices.org.uk).

Here are some practical suggestions of what we might be able to offer.

  • Bespoke training (this can build on basic dementia awareness and involve people with dementia as co-tutors)
  • Looking at Dementia as a disability – thinking what the equivalent ramps and grab rails might be for a person living with dementia; the ethics around flagging up an invisible disability or not; the use of language and its impact upon individuals with dementia.
  • Environmental audits (a walk-through) with people with dementia navigating a station and its services.
  • Looking at the accessibility of all your published materials.

Obviously these are only suggestions so we would be happy to discuss any options with you at your convenience. If you want to find out more, please free to contact us at any time by email or on the number below.

Currently the group is much more inclined to hire a coach – so can the train truly take the strain?….

we await replies

very best wishes

York Minds and Voices

Dementia care still needs to get undressed!

I posted this article a few years ago but I am convinced it is more relevant today, given the current climate and demands on services where neither more staff, more time nor more money will magically appear any time soon. We need to revisit how we operate. We need to take the lead from people at the heart of services – properly – not through tokenistic gestures. Next week at the UK Dementia Congress I’ll be re-presenting the work I undertook following my reflections below. The content of the work was very much driven by interactions, observations, actions and words of people I frequently meet in my work.

The urge to make reference to dodgy populist makeover shows and super nanny shows on telly has finally overcome my fear of embarrassment at admitting to watching them. And so I now have let you know that I do believe that Trinny and Susannah hold the key to the future of dementia care.

When it was on I used to be gripped by the weekly episode of ‘Trinny and Susannah Undress’. Each week they would move in with a couple where one or both were still dressing in the 80’s, or giving up on their appearance and giving way to expanding waistlines and life in jogging bottoms.

Now I’m certainly no fashion guru (ask my wife) but I thought a lot of the couples had quite some style. However, what fascinated me was the fact that Trinny and Susannah dared to delve to the heart of the relationship between the couple. The shopping for new outfits was almost a side issue as they would ask intimate questions about the couple’s relationship.

They probed into how and why the couple have stayed together and at what first attracted them to each other. They looked too at what couples were feeling about each other now and at what had changed in their relationship (often children and jobs got priority over looking after their own relationship; or a sense of identity and self esteem had gone or drastically reduced).

Each week they got to the heart of the relationship, helped couples rekindle the old spark and remind them that being together happily was still possible even with the challenges life was constantly throwing at them and everyone. The show would culminate in the couple literally standing naked in front of each other (fortunately behind a screen!). I was amazed each week at how Trinny and Susannah could persuade the couple to do this. It was clearly as a result of them daring to broach certain subjects and getting a positive response – they were dealing with people who were truly relieved that they were being helped to focus on awkward topics.

I hope you are still with me on this. Ask yourselves what exactly do we see each week in our work? Do we not wince when we visit couples who are constantly at each others’ throats because one doesn’t understand the behaviour of the other? I regularly see people questioning the validity of decades of marriage because they can’t understand why their partner is rounding on them. What do we do about it? We separate people. We send one off to respite or day care or into hospital for assessment. Then we send people back together equally ill-equipped to cope with the same unattended antagonisms. We resign ourselves to the fact that nothing can be done about a couple whom we perceive to be ‘always fighting’. This then becomes a self-fulfilling prophecy. I have studied and tried out a relationship-centred approach to care and I have shared my findings on a number of platforms (see References and links below). I found, as did Trinny and Susannah, that people want to talk about what’s important to them. It gets results. People are helped to focus on why they are together and they can be united against the dementia. They are relieved to broach subjects together as a couple in a safe environment (much less public than on national television!).

So like Trinny and Susannah, all front line workers in dementia care need to be equipped to carry out relationship-centred work, to broach subjects that to some may seem awkward. Otherwise we remain with the tea and sympathy approach and the usual crop of services. We have constant contact with people with dementia and their carers so we need to enhance the quality of that contact. Far too often I found myself in somebody’s house, seeing a couple struggle living together with dementia, witnessing personal detractions (usually with no ill-intent) and pointless argument. I was usually there for another reason and usually had another appointment 10 minutes later. So the matter could not be addressed and the couple would carry on in this spiral of mutual self-destruction.

I believe (and we must all believe) that people with dementia and their carers can live well with dementia. We need to be aware of the change in dynamic of a relationship that occurs with the presence of an illness in the family. For too long now dementia care has tended to focus on the individual (person with dementia or carer) and their unique set of problems rather than the family system and how it has adapted to whatever illness is present. Over recent years standards, challenges, strategies and visions have tended to overlook this approach. To explain, let me tell you of another telly programme I loved.

‘The House of Tiny Tearaways’ was one of those super nanny programmes where child psychologist expert professor Whatsername works with families with ‘problem’ toddlers. They live together for a week and talk about the whole family system and about the feelings of every member. Everyone is included and specific strategies are tried out.

It always makes me laugh because I immediately think of how these families would be dealt with by the current dementia care model. The child would be sent away for a couple of weeks to a home so parents could have a break. No work would be carried out with anybody and they would be expected to cope better once the child returned.

Adopting such a model in children’s services would rightly cause a national outcry. Why, then, do we tolerate this in older people’s services? Are we content to allow the gaps between respite shorten every time until a crisis and  admission to long term care ensues or can we act to equip families to live with dementia longer in the community?

How about improving the emotional and psychological well-being of people with dementia and their carers to enable and equip them to live together with dementia?

How about breaking the taboo that ‘dementia’ or ‘Alzheimer’s’ is in our psyche?

How about including people with dementia in all aspects of their assessment, diagnosis and care?

How about promoting awareness of the fact that dementia is eminently ‘liveable-with’.

A leaf out of Trinny and Susannah’s book would be a great place to start. Now I’m just off out to buy a pair of crimplene slacks I’ve spotted – they’ll make me look HOT.

 

 

http://www.innovationsindementia.org.uk/videos_gettingalong.htm

 

 

 

 

 

 

One sided or Lob sided – Dementia care is still way off balance.

My annual reblog. STILL the blame-laden stress and burden model persists with the usual suspects of tired services. Let people with dementia set the agenda. Time to level the playing field. Time for asset based approaches

elhijodeveronica

One sided or Lob sided – Dementia care is still way off balance.

From over 15 years of time spent observing families and couples interact; from what people with dementia have told me about their needs and questions, feelings and fears around the time of diagnosis; and more recently from the excellent eloquent testimonies of the likes of Kate Swaffer and Wendy Mitchell in their daily blogs, I have become increasingly concerned about the overwhelmingly carer-focussed approach in many areas of the field of dementia care.

The predominantly care-for-carer approach has prevailed for many years. The Alzheimer’s Society was founded as a carers’ organisation in 1979 and Carers UK has a strong national voice, incorporating Crossroads care now. This support is of course absolutely necessary, but it must not be at the expense of the voice and support of the person with dementia. I am often told in social situations…

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