Yesterday I was invited to give a presentation at the Better Practice Adelaide 2015 conference held at the Hilton Hotel, and most of the time now when I present, I also always represent Dementia Alliance International in some way. The theme of this event was Quality – Through the looking glass: What’s new in 2015.
One of the points I made in my presentation was that when looking into the looking glass of aged and dementia care currently, it does not look like a place I would want to go. When I look at the current medical model or pathway of care for people with dementia (or rather, lack of an ethical pathway), that is not very attractive either, and if I was Alice, I’d simply refuse services at all. My presentation covered models of care, rehabilitation for people with dementia, human rights, Prescribed Disengagement, language and stigma, and finally I talked about the lack of authentic inclusion of people with dementia in the dementia friendly communities projects around the world.
Many of the delegates during the meal breaks admitted they would not wish to be residents in their own facilities, and some admitted to feeling very despondent about there ever being positive change in the sector. One delegate who has only worked in aged care for a few years, mentioned that often, the longer a staff member has worked in aged or dementia care, the harder it is to get them to see they might need to change some of their practices. It is always easier to keep what we’ve always done.
Whenever I present, I always also promote the organisation Dignity in Care Australia whom I volunteer for, and if you are interested, you can register for our EAT, PLAY, LOVE Dignity In Care Australia Conference later this year here with the fabulous Maggie Beer.
Anyway, yesterday, I was reminded of two fab and thought-provoking quotes. The first is this:
“Would we value a potentially shorter life lived with personal choice, control and enjoyment over a potentially longer life of comparative inactivity lived under restriction?”
Steve Morgan & Tony Williamson
I’d go for the shorter life every time, and personally, remain confounded by the researchers and many of the doctors seeming obsession with finding a cure or disease modifying drugs, and/or prescribing us drugs, just to keep us alive a bit longer.
Quality over quantity, every single time for me.
My father in law used to ask me to ‘up the morphine’ on mum, as he knew that as an ex nurse, I knew enough to euthanise her. Of course even though I agree with voluntary euthanasia, I did not do that, and don’t ever believe I’d be able to do it, even if it was legal. But of course, that’s a whole other topic! I also know he wished to die for many months before he did, as he felt trapped in a prison (we call it residential aged care), and he was distressed he had no control, no choices, and forced to live a very inactive life under restriction. He had ridden a bike for over 25 kms since retirement, and before that had always been active with work and Judo, so to be ‘restricted and restrained’ was more than distressing.
The next quote added here as an image, from a rather lousy photo I took of a power point slide! In fact, the first photo was so bad, I had to type the quote above. This one, for me, epitomises the challenges families face when deciding what is and isn’t best for someone they love and ‘care’ for, but sadly, decisions are more often made around ‘safety’ than that persons right to autonomy.