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
- 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!
- 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.
- ‘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!