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

 

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