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



We want to challenge outdated views of dementia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

Let us live better with dementia

Can’t stop reading and re-reading this brilliant piece. We are lucky to have the voice of Kate Swaffer to highlight the extreme imbalance in carer-focussed (implied blame on people with dementia) representation in the dementia field. As Kate says, feel free to talk about your experience but don’t vilify the person with dementia in doing so. Many carer organisations have high profile and rightly so but this cannot be at the expense of the welbeing of people living with dementia. Let’s end the stress and burden model! This is a must read.

mortality 2The last few days have been racked with a sadness after the loss of a friend with younger onset dementia; for many of us there has been a revisiting of our own mortality, and the issues many people with dementia and our loved ones discuss, especially in the early days following a diagnosis. The fear engendered by the hideous and negative media campaigns, the language of war being used to describe dementia, and the negative dehumanising and demeaning language to describe our experience… no wonder many think it is preferable to commit suicide. ‘Society’ is still determining it is not possible to live well with dementia.

The question so many of us have asked is this: should we take our own lives, to stop the ‘suffering’ that society tells us (repeatedly, and oh so very repetitively) we will experience?

As well, we have Alzheimer’s Associations and Societies who fundraise primarily to support the operation of…

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The deserving and the undeserving suicidal

Kate Swaffer has produced what I believe is a seminal post which so eloquently situates where we are at and where we still need to go in dementia care. The must read entitled ‘let us live better with dementia’ can be found at . In it she broaches the topic of how people with dementia can arrive at thoughts of suicide. I was recently engaged in a conversation on that very subject with a friend living with dementia. It also reminded me of an earlier blog of my own which highlights the phenomenon of what I called the deserving and the undeserving suicidal. So here it is again.


I remember some early classes on sociology in health care as a student nurse and our lecturer spoke about the deserving and the undeserving poor – We see this in the strivers v scivers debate currently prevalent as elections approach.  When leafing through a Sunday paper last year, I was upset to find a further divide showing its ugly head. On one page there was the article about the Afghan veteran soldier who had taken his own life, having struggled to cope back home. He had posted a you tube message before his suicide. The article focussed on how awful the lack of support is for our boys once back home – that this was unnecessary; that we should strive (there’s that word) to ensure that we provide better mental health support; that we cannot let this happen; that if this particular soldier had had that support we could have perhaps helped him through…

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