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.


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