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