This image came to me via a dear friend (#twinnie) Shibley Rahman, with different words in the speech bubbles, and I asked my very helpful BUB to change the wording to my own. I hope you like it. Of course, it might sound a little too outrageous, or outraged, or even a little ‘in your face’ (can’t think of a fancier way or word to say that), or maybe even a bit confrontational.
It is probably meant to be confrontational. Why? Quite frankly, it is still the simple basic human rights of people with dementia that is so often being denied to them, especially in residential care. It still shocks me that a caring profession has been pushed into providing care that is far from person centred, because of the economic factors of running aged care.
Sadly, in many nursing homes with residents who are decent and wonderful human beings…. mothers, fathers, grandfathers, aunts, sisters, friends… people who have contributed to society for most of their lives, they are being restrained with medication or physical restraints. Being “medicated” to make them easier (but not cheaper) to care for, or placed in beds designed so they cannot get out of them, or a ‘seat belt’ to the chair for ‘their safety’. Oh, and they are being locked in “Secure memory units”, which to me is just a fancy term for being locked in jail, or trapped in a cage.
According to my online Encarta Dictionary, medication is the “treatment of an illness using drugs“. However, the use of a significant proportion of the drugs STILL being used to medicate people with dementia is not being used to treat an illness, but to manage “behaviour(s)”, to make the resident more compliant and easier for the staff. More often than not, research says, it is not being used for illness at all, but to restrain them, and dementia is actually a contraindication to most of the psychotropic drugs being dished out to people with dementia and many elderly in residential care.
There is another form of restraint that does not appear in the literature, but that I am experiencing, and led me to add the image of sheep being caged, with its harsh wording on this blog. It is the fact that the voices of people with dementia are still either being left out, or when asked for, then not only being rejected, but ignored.
As an advocate for people with dementia and the elderly, I regularly speak at events or online about the issues facing us, and the amount of ruckus this seems to muster is unsettling.
It seems to “rock the boat” (Prof Debra Myerson, via some presentation slides by Helen Bevan @helenbevan) makes people uncomfortable, defensive and slow to accept you are not just being a destructive trouble maker. When I give negative feedback, I suspect I have trouble not sounding annoyed, and sounding like more than just “the grit in the Oyster shell” (Glenn Rees), as I take things personally, and definitely feel a responsibility to stand up for the rights of everyone with dementia.When it comes to my human rights, it is personal! But to walk that fine line of rocking the boat, and still being in the boat, is very difficult, and to be able to do that we need to “conform and rebel” at the same time.
Creating change for people with dementia, and the elderly especially those living in aged “care”, is really my goal in speaking out, and in being a “boat rocker”.
I do still say for the majority of the time, aged and dementia care is more about being Purse-centred care than Person-centred care. The money crunchers and owners of many of the aged care sites often insist on their managers running on low staff levels and using other cost cutting strategies, all of which impact the level of person-centerd care that is possible to a resident, by staff who for the most part are doing their best to provide optimum care.
Recently I was pleased to read many people’s examples of really good care that a number of twitter-friends had tweeted about, after my “purse-centred care” tweet! It is encouraging to hear of positive experiences for everyone, so let’s hope change – not continued PCC talk fests – really is in the air. For the most part, staff working in residential care facilities are doing their very best to provide good care, but constrained by funding, low staff levels and the notion that task based care is more important than person centred care.
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— Kate Swaffer (@KateSwaffer) June 28, 2014
— Training For Carers (@trainingcarers) July 13, 2014