Another great blog recently by Sonya Barsness called Being Better than a Stick in the Eye. In the beginning (i.e. after my diagnosis) my husband and I too were ‘starving’, for any old stick in the eye! And in the beginning we also meekly accepted any old stick in the eye. There was so little support 10 years ago, it still truly shocks me to hear new members of DAI report they too are told to get their affairsin order and prepare for the end, and too many are given little other support than the Prescribed Disengagement® I was given
As anyone who follows my blog knows, I no longer accept that, and my #BanBPSD series during World Alzheimer’s Month this year brought a lot of professionals out from the shadows wanting to do better. Early in 2019, you will hear a lot more from us all, including my article on getting rid of the term ‘Unmet needs’, which is barely a palatable replacement for BPSD, as it still implies all the fault or issues are with the person with dementia.
I’m sure Sonya is right in saying that we accept anything in the beginning because ‘we are starving’, and anything seems better than ‘a stick in the eye’.
In her blog, Sonya says: The perils of being starved and accepting anything are especially concerning in education about dementia. People are starving for knowledge, so the danger can be that any education is good education. People with dementia and their care partners accept this knowledge, and apply it.
Even if it is education that refers to people living with dementia as “demented”, or labels them as aggressive, non-compliant, sun-downing, wandering, etc.
I’m also sure the construct of BPSD was taken up by professionals and academics as they too were starving for education.So quite literally, as HCP’s were also starving, anything would do, and although this construct was never evidence based, they worked for decades in an attempt to make it so. Unfortunately, BPSD has turned out to be a very large and very cruel ‘stick in our eyes’ and has ensured even worse care, and more breaches of our most basic of human rights.
It’s time we completely rethink dementia.
There is no point oiling a squeaky wheel, when it’s the wrong wheel.