Day 2: National Dementia Congress

pillsToday I am looking forward to hearing a friend Ian Gladstone present Living and coping with Younger Onset Dementia as the keynote opening speaker at this event. Other presentations today include topics about putting the person first and well being, the complexities of supporting people with dementia and their family support person, an overview of a program supporting family support people, food, women and dementia, wound care matters and the final presentation by The Hon Shayne Neumann, Shadow Minister for Ageing, Minister for Indigenous Affairs and Federal Member for Blair on The Politics of a Dementia Friendly Australia.

Some of the presentations yesterday were truly inspiring, and we heard of some excellent examples of positive change in the dementia sector. Bethanie in WA, and Frankston Hospital are doing some great things and changing culture and practice, and I was encouraged and inspired.

I did however, still come away from the day feeling extremely concerned and uncomfortable about the ongoing claim by many in the health care sector of always working within guidelines of evidence based, best practice, and yet still hearing stories that more often than not, anti psychotics are still used as first line management for people with dementia who have unmet needs, and display ‘challenging behaviours’. Even though, it is NOT BEST PRACTICE…

And frustratingly, hearing of yet another App, to map ‘challenging behaviours’, rather than an App, to map clinical practice, which actually is what is needed.

Obviously, I have a vested interest in this changing, and remain confused, and concerned that whilst best practice is talked about, and a lack of evidence is often used to justify not doing something innovative in dementia care, and yet, these harmful to people with dementia drugs are still being used so often…

The following is a quote from the Pearl Dementia Care Report;

Dementia care study confirms dramatic reduction in requirement for antipsychotic medication with improvement in wellbeing”

The study was highlighted to me today by another friend, Mick Carmody from the Alzheimer’s and Dementia Weekly, an online newsletter we both subscribe to, but I had not had time to read, and is another good example of evidence showing the benefits of de-prescribing the mutiny of drugs so many people with dementia are given. Read the whole article here… Pearl_Dementia_Care_Report_2013

I remain hopeful of change, and hope studies like this, and Professor Brodaty’s Halting Antipsychotic use in Long Term care (HALT) Project about de-prescribing gets more traction… sooner rather than later.

8 thoughts on “Day 2: National Dementia Congress

  1. Kate,, V and I have been through this dilemma over the past few months. It’s about rights, yet again.
    As I’m sure you noticed, V’s physically crippling panic attacks and constant anxiety have become debilitating over the past few months. It’s one of the toughest symptoms of LPA. It’s taken away her joy in living.
    It’s also been harrowing for me to witness her struggling with it. Practically, it has meant that she can’t be alone. My back/neck pain has often been acute as I react to her distress subconsciously, so I can’t always do what’s needed at home nor drive to appointments…. and I beat myself up about letting her down while I know that my pain is symptomatic of inadequate self-management, and so unsustainable.

    We discussed it and V decided to seek help from her wonderful GP who’s a whizz with meds. But that was a complex decision-making process as V finds it hard to make decisions. I interrogated myself about whether I was pushing her for my own self-interest. (The meds are helping her).

    I now wonder what my role should be when other symptoms cause her distress and she can no longer express herself verbally… I guess I’ll have to rely on the careful judgment of the GP (who doesn’t know much about her particular diagnosis but is an excellent resource and a sympathetic, respectful man BTW).

    I wonder, because it’ll be at that stage that V will no longer be viewed as “competent”, when the common code of verbal language is out of her reach. She will seem “uncommunicative” to all those who don’t get her body language and facial expression. (BTW my mother was threatened with placement in a closed dementia ward because she had aphasia – but not dementia).

    It’s always about the inability of the care industry and care partners to open their minds to the diifferent realities of those they claim to support. I include myself and my own relative ignorance.

    Cheers doll. xx

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