Dementia in Australia

The last two days I’ve been working in Sydney with a group of professionals ranging from experts in government policy, expert researchers, clinicians, medical doctors, service providers, NGOs, and dementia consultants.

Oh, and me, a representative of people with dementia, more often referred to only as a ‘consumer’.

Except I was also there in my other roles; an expert in dementia (not just the lived experience), a retired nurse, a past care partner, a current researcher, and the CEO, Chair and co-founder of a global DPO/NGO, currently representing people with dementia in 49 countries.

But I am a bit tired of many only seeing me as a ‘consumer’…

The last two days have still been a very positive experience, and hopefully the learnings for everyone will inform policy, research and practice, to transform the tragedy that is much of what’s currently happening in Australia in aged and dementia care.

We spent a lot of time today working on strategies to improve research, and significantly increase knowledge translation.

That is obviously an ongoing work in process…

But this two day meeting was a positive initiative, in part responding to the expected negative stories and ‘outcomes’ of the Royal Commission here, and a series of investigations, a body of work and numerous consultations which have been taking place the last few months.

One only has to read the daily transcripts of the Aged Care Royal Commission Hearings in Australia to discover just how bad things are here. I’ve seen, it’s not much different anywhere else in the world…

And although there are still a few things many still don’t ‘get’, I’m delighted to say that with each meeting like this that I attend, that is definitely changing.

Slowly.

A colleague and friend, and an emerging Early Career Researcher (currently doing her Honours, though I hope to be a co supervisor for her when she does her PhD!), was discussing her research with me. It’s groundbreaking and really fascinating, although like I felt a few years ago, I suspect she has ‘Imposter syndrome’, when sitting amongst long time academics.

I’m really looking forward to reading the book (photo shot of the book cover attached), which she highlighted to me as I think it will inform thinking greatly.

Truly Inclusive Citizenship remains continuously and systemically elusive for almost all people with dementia.

Unfortunately, although the world has heavily invested in them, the Dementia Friends and Dementia Friendly Community initiatives do not come close to attaining Inclusive Citizenship, let alone an Inclusive Community. Nor does any other initiative or program that comes to mind.

Whilst organisations including universities won’t pay me (or anyone else with dementia) for my time, nor my intellectual ability and novel ideas, or my expertise and significant professional experience, this particular brand of stigma will continue to feed the ‘otherness’ and discrimination.

A health care professional today referred to this as SLAVERY.

Necessary: patience and perseverance

Footnote: I’m overtired and have not spent much time on this blog! Hoping it’s not too rambling and actually makes sense…

27 thoughts on “Dementia in Australia

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

  2. I can only say, ‘keep it up people’. Your voices and opinions are vital. I have learnt more about dementia from my meetings with you, Kate, and the responses to this blog than any industry training, academic instruction/study, and experts expounding in over-expensive books. I hesitate to mention the waste of time that has happened at several conferences. I was astounded at an ‘industry meeting’ yesterday to hear an executive in aged care saying how much shock and discomfort he and his team felt in realising that Australia’s new aged care standards will require them to actually ask ‘consumers’ what they want. As someone who has been continually asking people want they want for all of my 50 year pastoral care career, this statement floored me. How can you begin to imagine that you are working on others’ needs if you do not include them in the discussion and strategy planning? If these new standards do nothing other than drag such arrogance into the spotlight, that will be a giant step forward. I hope the standards don’t just get ‘committee-ed’ away into ineffectual oblivion like the current lot.

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    • Thanks dear Jim… and nothing surprises me any more! All we can do is hope the RC weeks out the types of people you had to listen to yesterday! Looking forward to a coffee date soon! X

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  3. You’ve made perfect sense Kate. I battled through taking part in a local DFC committee which refused to work in a dementia-friendly and inclusive manner themselves as it involved taking more time and effort. Eventually, out of respect to my own health (and as I was being ignored anyway) I resigned. I have now girded my loins to join another of these committees to add my influence, only to find that the same group of people are garnering the main, controlling roles on it and I am already being treated as a trouble maker for trying to insist on full involvement for PLWD in the process. Hope to stay the course this time. Thanks for being the inspiration that you are xx

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    • That’s the real rub of dementia friendly… most organisations promoting it, don’t themselves do it! Even disability organisations don’t provide adequate disability support for people with invisible disabilities! Go figure… xxx

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  4. Kate,
    To paraphrase Dr. Al Power, “People living with dementia are the Experts. The rest of us are merely paid students.” No truer words can be said.
    Living in the U.S., it’s not much different. Although in my state of Colorado, we passed a Bill to define “dementia as a disability” in 2018, it is amazing how the Association’s and Community groups have shut this down. These organizations professes to be “experts” (without dementia). They continue to declare that anyone past “early-stage” dementia (it doesn’t matter the type), is incapable of being discerning or making their own decisions! They speak all over our state and are advocates in our national capitol of Washington D.C.!
    I suggested in a ‘Dementia Work Group’ meeting a month ago, that 1) We should have individuals living with dementia as a part of the group. And 2),we should form a Task Force that would go to PLWD & their care providers to ask them wants/needs. At the meeting, they agreed. When we came back two weeks later, they had decided to move forward with the “ACT on Alzheimer’s” program that is a great example of Kitwood’s “Malignant Social Psychology”. (In essence, the “experts”, who do not have dementia, will tell those living with dementia what they need…and train service providers how to do the same thing!)
    I objected. Last Friday I was informed they have disbanded the ‘Dementia Working Group’. They are moving forward with the Agenda anyway. Pretty discouraging. This is lonely stuff.

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    • It most certainly is ‘lonely stuff’ Kelley! I do think in Australia we’ve really started to move attitudes and are progressing, but the issue of slave labour, as someone referred to it as yesterday, continues.

      Unfortunately, too many don’t see that particular issue as a problem. Plus, dementia advocates have the added problem of there being a new person diagnosed every 3 seconds, so there’s always someone unaware of how saying yes to being unfunded, actually contributes to the discrimination and stigma

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    • Yes; if the other experts are paid for their expertise, then what’s the problem with paying people with dementia for theirs? In my case, I’ve got quite a few other ‘domains of expertise’ as well. Those I know with dementia who are still in paid work, are too scared to declare they have dementia as know they would risk losing their jobs. If that’s not discrimination against people with disabilities, I’ll eat my metaphorical hat!

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      • Wow. Brilliant even when “over-tired”.
        The conversation continues, dear Kate, from that night when I sat opposite you at dinner after your graduation at UOW😊. I’m horrified to learn that those in paid work don’t dare self-identify but I understand why. I’m heartened, though, by those who have managed to demand reasonable adjustment at work following a diagnosis and I wish that happened more often. I also wish we knew more about how the rights of PLWD are eroded in the first few years post-diagnosis. We know a lot anecdotally, but I suspect we need to do some monographs that really document how those changes occur.
        It hit me again during the recent NSW elections: how many PLWD voted & how many were simply ignored? What really happens after people duly complete their legal paperwork? Do EPOAs & Enduring Guardians actually start immediately invoking those powers? Are people removed from electoral rolls? By whom, if so? What happens in residential facilities? Are people enabled to vote if they so wish? Facilities have a legal responsibility to do so, but I suspect that “guardianship” trumps when PLWD are concerned (assumed lack of capacity).

        As you may know, we Kiama DAGs have designed our own community education sessions. It’s surprising how few people in the community have thought about PLWD & citizenship, but it’s good to see that few dare argue that “they can’t possibly do X Y or Z”.. when it’s a person with dementia who’s leading the session!😉

        It is outrageous that you and others are not paid for your work. It hurts me too that I’m not paid: I’ve recently opted out of a couple of research projects when I realized that my workload was getting ridiculous & that I was feeding someone’s research agenda that would not improve my situation at all ( those “carer support” type studies).

        We are beginning to be paid by organizations that need staff/volunteer training around dementia….not much, it’s about ability to pay, after all, but I guess it helps cover some costs at least. Not enough, however, to keep our project officer employed, so we have to win grants if we’re to continue.
        I think we can be self-sustaining if we grow our membership locally & regionally. The need sure is there. People are desperate for personal support, advice on available resources & funding, signposting, etc. We need also to be able to support one another in real life, which we’re starting to do.

        Much love to you. Hope to see you soon at one of the Royal Commmission /Dementia consultations. I’ve decided to “go back to work”, BTW – but only minimally. There’s a lot of work ahead to do in the education & training space, & I’m not done yet.😉 I guess I never really did stop work – I just stopped getting paid.😅
        Now it’s really about not only being reimbursed for expenses, but being paid something for our time.

        On we go, sista! 💪❤

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      • I heard of more people with dementia who are working this week, but too scared to disclose as know they will lose their jobs… we as a human race have one long way still to go!

        I’ll not be involved in the RC Hearings… even though I’ve asked to be. Maybe I’m paranoid but I have a gut feeling why and who’s behind blocking me. Perhaps though, the in house meetings will end up being more valuable anyway.

        Hope you and Dennis manage to work our being paid appropriately for your time and hard work too! Hugs xxx

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  5. Thank you Kate for posting, even when you are obviously busy and focused elsewhere. I look forward to the book being published! I also am amazed that people like your self are considered ‘consumers’ and are not referred to as ‘experts’ or indeed Consultants. Where else in the (business) world do we expect the experts in the field of interest, to volunteer their time and expertise FOR NOTHING? anyone with industry knowledge and experience is paid handsomely for giving their insight and many people know of someone who has worked in a public service area and ‘retired’ or made redundant, only to turn around and charge twice as much as a consultant for their opinion and input.

    As you say, paying the experts such as yourself, would be an example of a society showing/acting respect and inclusion for all people. As a person who spreads the Dementia Friendly Communities message, I often use the terms inclusion, fairness and humanity to describe the DFC message and hopes for a future community. I hope in the future we will not need to be talking about these things, in this context and as much as we need to currently.

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    • Respecting and valuing everyone… yes, even people with dementia. Absolutely it means paying us, especially if we are providing expertise and consulting. I suggested to some people today the main KPIs for DFCs should be employing people with dementia. Wow, now that would reduce stigma, isolation, loneliness, depression, apathy and stigma, almost overnight if all countries were compelled to do that. Hmmm…. I was always a bit of a dreamer!

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  6. Hi Boiler been thinking about you and how you got on at RC. Your words made perfect sense so pleased you came away with some hope for future change. Every journey must bring with a single step. Thanks for the effort in the face of adversity that you have put in to be part of this for yourself and all the people you represent. Sleep well much love 😘 Ness

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  7. I have heard a lot of names for us with dementia but never “consumer”! I am involved in a lot of research, mainly to keep my mind active, although we receive very generous expenses. I don’t see it as slavery as we are assisting others in the future, and it is not compulsory, the expenses help!

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    • You’re lucky never having heard of the term consumer Martin! It’s very common in my country. In fact I’ve recently learned to LOVE it, as thanks to consumer law, my personal rights are more likely to be legally claimed, if I chose or needed to pursue them more actively. Almost all of my expenses are now well covered as an advocate (consumer voice) here too. But that’s not what I was referring to in this post. I’m unclear why my expertise is not valued enough to be paid, like all other consultants. Simple really. The term slavery used today wasn’t made by me, but it definitely rang true. In my opinion, if my/our expertise wasn’t valued, we’d not be invited. Therefore, a fee should be attached to it, like everyone else. I too feel the value of helping future generations of people with dementia too, and have volunteered all my life. That’s not really the point. Anyway, onwards and upwards in spite of the fog, in our own unique ways. Take care

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  8. Keep up the great work Kate. ..lighting a lamp in thr darkness…. 🙂

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