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!). –