Better Practice 2015 conference

Screen Shot 2015-08-07 at 1.22.28 pmYesterday 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.

Screen Shot 2015-08-07 at 1.13.13 pm

11 thoughts on “Better Practice 2015 conference

  1. Fantastic blog Kate, many thanks. I’m still thinking about decision-making capacity if my executive functioning ends up impaired 😉

    Who cops the job to action my advance care directive? Some poor RN in the middle of the night, with oral orders & “pain relief as needed” on a chart as the only backup? Complicated.

    I’d rather be dead than ever again locked up. But will I get the chance to even know or influence what actually happens?

    I hope I’ll follow the grace & wisdom of my mother Gwen, who called the shots all the way despite her aphasia (not dementia- she had expressive aphasia due to vascular incidents- although she was treated as if she had dementia & narrowly escaped being shut into an end stage dementia ward at 6pm on the night before Easter Friday while my sister & I were each 7 hours away!!!). Of course we screamed blue murder but it was a close call. Had I been off on my evening power walk that night without my mobìle she would’ve heard those metal doors clang shut & spent 4+ traumatic days at least alone, listening to people screaming (I went there, I’d visited the ward. I heard. I know it was people vocalizing as they could). But my experienced Aged Care physio train-the-trainer sister needed 3 neat Scotches to stop crying that night😉.

    And let’s not start on dolls! Sis said “Never, over my dead body, will Gwen who watches ABC news intently every night still, be handed a f….doll! She’s OVER being ‘maternal’, don’t you get it?”

    V’s flamboyant great-aunt ended up in an asylum in her 60s, mute (in S.A.). We’ll never know if she had PPA or was censored under mental health.legislation at the time & massively drugged till she couldn’t speak.

    I reckon I’m a candidate for lung cancer. If I’m so diagnosed I’ll have to get hypnotized to stop smoking (I’m a hopeless “bakky” lover but otherwise with the constitution of an ox😉, though with a truly bsd back).I’d give interventions a reasonable shot & pull all stops out to fight it but I would NOT go on till I was half my usual weight. Nembutal thanks. Night after a party.

    If I were diagnosed with dementia? Not so sure. Depends what “variety”. Behavioral variant FTD?-no thanks. LPA like my girl? I’d probably want to explore that for a while at least, live without my wordiness, use my senses more.
    But having lived beside my girl’s utter distress for 6 months recently I’d like my advocate to move fast on the right drugs for the symptoms, please!
    And if I end up crying for weeks or stay rigid with the effort of keeping on keeping on, if I slump in a heap and even music, touch and smell can’t bring peace to my face and body, I hope my advsnce care directive will guide and safeguard my guardian, as my late partner Betty did for me.

    May my “white witch” ever remind me how living and dyjng should be. Autonomous. A contract with self.

  2. As the baby boomers age, they will want to have more control over the end of their lives. Many are unlike previous generations who just did what they were told. I know of some that detest nursing homes, however they won’t be able to avoid it. Some will, however, have enough confidence to “take matters into their own hands”. They are already doing it now. Living with dignity is important too.

  3. Thanks once again Kate, your words and the quotes really resonate. My mum isinaged care (for the last 3 moths and if the choice was available I know she too would go to the shorter life. Thank you again xo

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