MY DEMENTIA -the manifesto

last week here in York we completed an 8-week programme entitled MY DEMENTIA. With the proliferation of carer information and support programmes, we thought as ever about redressing the balance by providing a short programme to allow individuals to take on board their recent diagnosis; to ask questions in a comfortable undaunting environment; and to share hopes and fears with peers. Below is a summary of some of their key statements and their learning, put together in what we topically called a manifesto. We hope you find the simplicity helpful in understanding that dementia-friendly is just about being friendly.

My Dementia, York

February – April 2015

Our statements, our learning – a manifesto

 

Statements:

We want to challenge outdated views of dementia

We are very important. Many people can learn from us and from our experiences. We have so much still to offer

We’re still us

Our upbringing and previous experiences affect how we live today more than dementia

We don’t feel old (some of us aren’t!), we feel okay!

We’ve all had a knock to our confidence

We have a right to share how we feel, just as carers do

Dementia friendly is about being friendly, not knocking our confidence or exposing us

Laughter is a good thing, we can still do that

Living well and engaged is still possible with the right support because it’s hard being on your own a lot

I’m so much more than a person with dementia

We are comfortable talking about death

Our knowledge of dementia

Dementia is about losing nerve cells. But not all at once – so we just get on with today

If I like something or fancy someone, I’ll definitely remember! Yes – our emotions remain very much intact and so we remember things of emotional importance

We know we will more than likely die with dementia than die of dementia, so life goes on!

We might forget your name, but there’s no denying the love we have for you

An upside – that feeling when you find a dress you forgot you bought!

If we repeat ourselves – so what?!

 

 

What we ask of you

Don’t highlight our mistakes, don’t rub it in

Help us stay connected

At diagnosis we got little or no information – we want more in-depth information to hand on diagnosis

We want the right to find out more about our dementia

Don’t see repetition as a problem

Don’t see repetition as a problem

Don’t see repetition as a problem

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