Over 6-8 weeks people living with dementia as course tutors and people living with dementia as learners spent time learning and sharing together. – this is a new way of learning at a pace and in a place that is comfortable, welcoming fun and non-judgemental. From all our sessions, here is a list of what we learnt.- Start spreading the news.
A Good Life With Dementia 2019 – What we Learnt
- Our course matched the questions of the learners – Of Course!
- We are all experts by experience. Professionals can only learn so much from a book – that’s why we put this course together – who better to learn from?
- We can share our experience to help each other avoid some things and find out about others.
- Our care partners agree that properly listening to people with dementia is great and really beneficial too.
- We’ve all got something in common – a hidden disability- and we can learn from each others’ experience.
- Even the experts aren’t experts. Currently the most certain thing about dementia is the uncertainty
- What is dementia? – It’s a nuisance.
- It’s something to do with brain cells that can’t be re-capacitated.
- Our experience of symptoms are all very different.
- Challenging behaviours- that’s what other people think we do!
- There is a physical organic process going on and IT IS NOT OUR FAULT.
- You might not lose all 100 billion brain cells at once, but if you lose the ones that make you leave your shopping on the bus, it’s not a help.
- It’s a bummer of a diagnosis but if on top of that you have silly arguments and tensions with your nearest and dearest well that is too much and unnecessary.
- Dementia – it’s nothing to be ashamed of
The impact on our relationships
- Sometimes partners with the best of intentions can make us get in a pickle
- I wish my wife was here to listen. Society doesn’t realise the impact of dementia.
- Readjusting to having dementia is a real and current difficulty for us as couples.
- Dementia has meant we do more things together now as a couple.
Adapting to the world around
- ‘Other people can be patronising – even friends. They can’t seem to communicate with me well.’
- Once the medics have done their medical bit, the next step is to adjust to living with that diagnosis in what can be a very disabling society.
- There is a real benefit in signing up for research projects
- The best activity is the one you will do!
A good life is
- To be who you are, to be seen as you wish to be seen – like the opportunity to get out with the dogs for a blow-out.
- To be able to sail the ship of life into a safe harbour
- To be able to flaunt it if you’ve got it! – and to carry on as normal.
- To still be treated as an individual.
And two important points
- There is no danger of us sugar-coating dementia. We know that anyone of us could have moments where it all goes ‘wibble’ – and that’s really upsetting.
- We start with nothing, we end with nothing, everything in between is sheer profit!