A Good Life With Dementia – our Top Tips blog 3/3

The second Good Life With Dementia Course concluded today. We put together all the hints, top tips and shared experiences. there are some absolute corkers in here. – We don’t sugar coat dementia – but we’re still allowed to have a laugh!

A Good Life With Dementia – TOP TIPS

Coping with symptoms

  • Dogs have been a huge help. I take them out when I want to growl!
  • Don’t give up on things even though it is difficult.
  • Keep doing what you can rather than bemoan what is lost.
  • I have 7 folders in my house – one for each day of the week to sort out my diary … ‘In theory, I’m perfect!
  • Our senses are affected too. Hearing, Vision, Balance. ‘Talking Sense’ by Agnes Houston is an important resource for all.

Adapting to the world around

  • Looking for familiar landmarks such as the river or the Minster helps when feeling lost in York.
  • What helps me is plenty of reading and alcohol-free lager – just the best invention. I can drink it all day long and still not get pissed!’

Impact on relationships

  • Living alone means there is no-one around to move things. After 50 years of marriage that is not an issue for E. whose hubby has never lifted a finger in the house!!!
  • Trying to treat each other the same is a good starting point. Cut out the ‘You Can’t’ – We work together
  • ‘I can’t get over how helpful this has been. Without it you wouldn’t realise properly the implications of being diagnosed with dementia’

Physical tips

  • Move more, sit less, smile and be happy!
  • Get up every 20 minutes – stop using the remote control
  • ‘Walking – that’s the one for me – Big Style!’ We can build up to 150 minutes of moderate exercise per week (5 x 30minute sessions per week).

If you want to find out more about the Innovations in Dementia Good Life model contact me Damian@myid.org.uk

A Good Life with Dementia 2019 – What We Learnt blog 2/3

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

The Course

  • 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.

About Dementia

  • 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!

A Good Life With Dementia Class of 2019 our manifesto

Today the second ever Good Life With Dementia course came to a celebratory conclusion. Designed by and delivered by members of York Minds and Voices – all people living with dementia. I am delighted and privileged to have helped facilitate. Over 7 weeks we have shared top tips; we have drawn up a long list of what we have learnt and we have detailed what we need from those providing services and how people with dementia should be involved at every level of that. Given that more elections are on the horizon here in the UK, here is our latest manifesto. PROVIDERS TAKE NOTE.

A Good Life With Dementia 2019 – Our Manifesto

Our potential

  • We are all experts by experience. Who better to learn from? Professionals can only learn so much from a book. Include us too!
  • We can share our experience to help each other to avoid some things and find out about others.
  • It’s so good for us to share information about our own symptoms instead of someone standing and delivering a pile of facts.

Around the time of diagnosis

  • Getting a dementia at a younger age is traumatic enough, but to have that take so long is doubly frustrating.
  • There is a lot of immediate attention then the contact stops – it’s baffling.
  • Services are providing the wrong things and are not listening to what we are saying we need!

Post Diagnosis

  • If we’ve got dementia, we need it written down so we can remind ourselves.
  • We need to be given simple information. No-one gives us this. It’s, ‘you’ve got dementia – now scram!’
  • We should not be fed doom and gloom and no solutions.

The impact on our relationships

  • It affects us all and we need support as a whole relationship.
  • How much help from services have we received in relation to relationships and the impact on the whole family? – NOTHING!
  • If we got this help early, then it might mean not needing to spend so much on responding to crises.
  • In cancer the whole family and relationship side and all the psychological support is addressed -but not in dementia. That makes us sad.

The world around us

  • 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 inconsistency in how we come across services and access entitled benefits.
  • Other people can be patronising. They can’t seem to communicate well with us.
  • We must not be dismissed with ‘What do you expect? You are old.’
  • And we cannot stand ‘You don’t look like you’ve got dementia’!
  • We have created a safe space here for people to be themselves in a non-judgemental environment.

Our Rights

  • ‘Dementia rarely comes alone’. We have a right access to appropriate healthcare when needed.
  • There is stuff we can do to compensate for some difficulties, and we have the right to carry on doing what we like.
  • We have a right to a diagnosis, to know about it and to have it written down too.
  • We have the right to be able to then get on with life with as equal an opportunity as anyone with or without a disability.
  • We have a right to access our entitled non-means tested benefits. These should be amongst the first things offered.

SO, providers, supporters please use your nouse. Put on Good life courses; create a space for shared learning amongst peers and a safe space for people to take on board the diagnosis; respond to the impact on relationships, create much more self management and end the doom and gloom without solutions.!

the next blog will cover ‘What we learnt’!

For more info on the Innovations in Dementia  Good Life With Dementia model contact Damian@myid.org.uk. Meanwhile here is the class of 2019!

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