The 20th century view of dementia continues…

Try as I might, I am currently really struggling to convince a group of global researchers on the importance of adding two simple things to a list of possible interventions following a diagnosis of dementia. It has got to the point, I feel discriminated and stigmatised by them, as most in the group generally seem unwilling to engage with me directly. Is it any wonder we seem to still be in the dark ages when we receive a diagnosis of dementia?

Seriously, I know I am direct, perhaps even a tad too blunt, but I am also very approachable, and up for a health debate over anything except politics.

Most of the current campaigns, including stigma surveys, all developed by well intentioned,  employed people, who themselves do not (yet) live with dementia, generally continue to stigmatise and discriminate, and actually often also undermine the advocacy work of so many peoiple with dementia around the world.

The quote above which I found on Twitter is from 2018, but I am told by new members of the DAI peer to peer support groups, almost daily, that peple being diagnosed with dementia even today, are still mostly only being told to go home and to prepare for the end. The narrative has changed to living well, which is not necessarily helpful either, as what does that mean anyway? It is different for everyone.

Yet, in spite if the slowly changng public and even academic discourse, no one is yet advising people with dementia how they can live positively with dementia.

We will need to keep asking for disabilty assessment and disability support, immediately following a diangosis of dementia. This is after all, a basic human right, and part of full and equal access to Universal Health Care. (Kate Swaffer © 2019)

Eventually, others may understand why, and perhaps even act on it, as based on the predicted prevalence from the World Health Organisation, they themselves may end up with dementia. ‘I’m tired Boss’, and maybe a little grumpy at having to say the same thing, over and over and over, for so long, but it seems, the time is not now to give up, as the global work is not yet done!

30 thoughts on “The 20th century view of dementia continues…

  1. Pingback: In the Blogs – 2019 – When The Fog Lifts

  2. Great blog Kate. My aunt has late stage dementia, and from the start, it’s all been about managing her and her condition, rather than finding how she might live well with dementia. I also work for a small Australian biotechnology company (we make a medical food for dementia) – and I hear this all the time. Your work is very inspiring, Kate. I always refer people I come across to your blog. Thanks.
    Cris

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  3. Hi Kate
    I had the privilege of meeting you and listening to you at the Nswnma conference (i think 2016) when you spoke at their professional day at Rose hill racecourse, talking to nurses about how to interact with residents/ patients with dementia.
    I have also listened to you via recorded lectures from the University of Tasmania that runs the Bachelor of Dementia course. You have such a way of communicating with people and giving us a better understanding of what it is like to have this disease.
    We need more people like you to come forward and keep advocating as it needs to be out there for everyday people to understand what it’s like to live with dementia and to have quality whilst living with dementia.
    thank you for all the hard work you do .

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  4. Kate, I think it’s hugely difficult for many to accept dementia as disabilities. I’ve had these arguments even with care partners.
    I think it stems from the lack of prospect of “cure”, so a diagnosis means “hopeless loss”. I see in online support groups that there’s so much “What’s the point? The disease will do what it does.” Still that “cure” mindset.

    I looked at the audience & the Commissioners on webcam while you were speaking at the Royal Commission. People who didn’t know you looked flabbergasted & sat quite still. I’ll bet that very few would’ve known you live with dementia had they not been told. It was very moving to see. There was deep respect & a hush in the room for Trevor, also.

    We ran another of our education sessions for staff of a new facility 2 days ago. They all said how wonderful it was to learn from someone living with dementia, how many of their pre-conceptions had changed in those few hours.

    You may sometimes feel that your work on the “world stage” is an uphill struggle. But human rights work is happening (even though we know how little notice many countries take of the UN Conventions!) There’s a trickle-down effect nonetheless.

    I saw that so clearly at the Sydney hearings of the RC. The human rights agenda of people living with dementia, and older people, is now in the media and in our Federal Court, front & centre. It’s because you advocates dare tell it like it is that public perceptions are changing. As Veda said years ago “People need to know what it’s like”. People are learning…but those in power don’t give it up easily!

    The issue of informed consent around chemical restraint is the current “biggie” coming out of the Sydney hearings. That goes right to the heart of what you continually confront, that idea that people with dementia can’t quite be believed, that “they” don’t really have capacity. The same issues are going to come up in the Disabilities RC too, no doubt even more acutely.

    I think we might just win this “consent” battle legally, because “rellies” are mighty riled too! The UNCRPD has to be a guiding principle for legislative change, it can’t be ignored.

    From respect of rights to proactive enablement is a big jump for policy-makers, too big for most, but I think that “best practice” evidence excites people, gives hope, fires up the imagination, puts “powerlessness” on the back burner.

    Don’t despair, doll! Hugs & more hugs. xx

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    • Thanks sista… the one line that really stands out, at least today (!), is this one:

      “Those in power don’t give it up easily.”

      This includes some of the very eminent academics and clinicians. But oh boy (or girl!), ain’t that the truth xxx

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  5. You are doing a great job…keep on going….i think minds are changing. ..slooowwlly Thank you for all your efforts and pray you have the sttenth to continue….ann

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  6. If it comes up twice I apologise! Me and my wife, as my carer, have just finished speaking to 150+ NHS Professionals in our area of Scotland, around Aberdeen about living with dementia and how we are enabled to do so by them; as I have probably said before Scotland seems to be very good at being positive regarding living with dementia, if you want I could send you a copy of my speech, although it was my wife’s that got a standing ovation!
    Come and live on the other side of the world, ironically we always thought of Australia as the ideal place to live in retirement…..

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  7. Me and my wife, as my carer, have just finished speaking to 150+ NHS Professionals in our area of Scotland, around Aberdeen about living with dementia and how we are enabled to do so by them; as I have probably said before Scotland seems to be very good at being positive regarding living with dementia, if you want I could send you a copy of my speech, although it was my wife’s that got a standing ovation!

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  8. It breaks my heart to know how you have given so much Of your first hand knowledge of this terrible disease and still feel the stigma! Your voice, perspective, leadership, courage and so much more deserves to be heard & respected!
    You have inspired so many people around the world to speak up and tell it how it is to live well with the diagnosis for as long as possible.
    The political will is not yet ready to move the needle forward !

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  9. Hi Kate I can’t begin to imagine how trying and frustrating it must be to have to repeat your message over and over often to closed ears and minds. The walls here sometimes get hard or maybe our heads become softer and more prone to wounds from continuous banging 😡🤔
    All I can say is take a break if needed but don’t give up my friend. Remember you are a tough old boiler, no push over, a woman of strong character with a spine like a steel star dropper, and a heart of ❤️. I will never forget the image of you I have on my desk standing on the stage in Pt Augusta and the quote you finished your presentation with was ‘our lives begin to end the day we become silent about things that matter.’ It’s too soon to become silent hang in there old boiler, sending love and encouragement to persevere. You know my number if you need to off load 😘 Ness

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    • Thanks ness… no time for a break though, I am determined to speak up, while I still can. Unfortunately, it is almost a daily experience for so many people with dementia. The real problem, is most of these well intentioned people, have little or no insight into just how stigmatising and discrimianting their behaviours towards people with dementia are. And, they said, we were the ones with challenging behqviours and lacking insight. Amusingly ironic don’t you think, at least it is to me! However, it really does impact progress towards claiming our rights as human beings. 😉 Love you and hope we can catch up soon xxx

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  10. Hey Kate

    I think you are so right on this. I hope you are supported to persist!

    I’ve been on a break for a few months, and now preoccupied with family and matters flowing from Dad’s death, but will be hitting the trail again in July.

    Would be lovely to chat sometime next month if that works for you, and as ever, if there is any way I can modestly offer support, am always happy to do so. Much love, Sue PH xxxx

    >

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  11. So important that we have you out there working so hard for us Kate and it is much appreciated. We realize that it also takes it’s toll on you and you have our full support and enduring love for your dedication x

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