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.
The 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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