Reclaiming Agency: Living beyond Dementia
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About this episode
Ever been told to just give up and prepare to die after a diagnosis? What if I told you that’s the standard script handed to people with dementia — and it’s completely wrong?
Today, I’m chatting with Kate Swaffer, a powerhouse who refused to accept that narrative. She’s here to shake things up, challenge the world’s outdated views on dementia, and show us why living well with this diagnosis is not just possible, but a right.
In this episode of Don't Be Caught Dead, Kate opens up about her own journey living with young onset dementia and how she rewrote the rules on what it means to be diagnosed. From the crushing “prescribed disengagement” she was offered, to founding Dementia Alliance International to give people with dementia a real voice — Kate’s story is raw, honest, and full of fire. We also dive deep into the institutional failings, the stigma that refuses to budge, and the urgent need to flip the script on how society supports people facing this diagnosis.
Kate makes it clear that dementia absolutely doesn’t mean you’re done or that death is all that’s left. Instead, it’s about reclaiming agency, demanding disability rights, and pushing for actual change — not just fundraising buzzwords. We talk about the importance of tough conversations about death at any age, raising awareness, and what real support looks like for people with dementia and their loved ones. This convo will inspire you to face death head-on — not with fear, but with preparation and purpose.
If you enjoyed this episode, please let us know! Share your thoughts, subscribe, and help us spread the word about the importance of discussing death openly.
Remember; You may not be ready to die, but at least you can be prepared.
Take care,
Catherine
Show notes
Guest Bio
Founder of Dementia Alliance International
Kate Swaffer is a PhD Candidate at the University of South Australia, School of Justice and Society, investigating human rights in post diagnostic dementia care.
Her other research focus includes dementia rehabilitation, and reparations and redress for harm to people living in residential aged care. Kate is an award-winning disability rights global campaigner, including winner of the 2021 University of South Australia Alumni Award, the 2018 Global Leader, Australian 100 Women of Influence in Australia, and the 2017 Australian Of The Year in SA.
Swaffer has been a major catalyst for rehabilitation for people with dementia, and for dementia to be managed as a disability, including equal access to the CRPD. She has a MSc (Dementia Care), Bachelor of Psychology, Bachelor of Arts in Professional and Creative writing, and is a retired nurse and retired chef.
Summary
Key points from our discussion:
- Kate's journey from healthcare professional to dementia activist.
- What “prescribed disengagement” means and why it's so harmful.
- The huge disconnect between dementia care and care for other disabilities.
- Why we desperately need open talks on death and dying from a young age.
- How we all can better support people living with dementia.
Transcript
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NASA stopped segregating black
people and white people in the 1950s.
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Why are we still segregating people?
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Just because they've got a disease.
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The only other people who are locked
away and segregated in our community.
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Are convicted criminals.
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So why ... Read More
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00:00:02,490 --> 00:00:08,790
NASA stopped segregating black
people and white people in the 1950s.
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00:00:09,570 --> 00:00:11,940
Why are we still segregating people?
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00:00:12,750 --> 00:00:14,850
Just because they've got a disease.
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The only other people who are locked
away and segregated in our community.
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Are convicted criminals.
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So why are we segregating and locking
people with dementia into secure wards?
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Welcome to Don't Be Caught Dead, a
podcast encouraging open conversations
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about dying and the death of a loved one.
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I'm your host, Catherine Ashton, founder
of Critical Info, and I'm helping to
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bring your stories of death back to
life because while you may not be ready
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to die, at least you can be prepared.
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Don't be caught dead.
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Acknowledges the lands of the cool
Coolen nations and recognizes their
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connection to land, sea, and community.
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We pay our respects to their elders
past, present, and emerging, and
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extend that respect to all Aboriginal
and Torres Strait Islander and First
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Nation peoples around the globe.
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Today I'm speaking with Kate Swaffer.
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Kate was diagnosed with a rare young onset
dementia shortly before her 50th birthday.
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Kate co-founded Dementia Alliance
International and has served as chair
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chief executive officer and board member.
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She was the first person living with
dementia to give a keynote address to the
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World Health Organization, and in 2017 she
was named South Australian of the Year.
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These are just a few of the
accomplishments that Kate has
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managed to achieve in her time.
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Thank you so much for being with us, Kate.
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Thank you for having me.
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Katherine.
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Now Kate, we had the pleasure of meeting
each other in Adelaide late last year
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at an advance care planning conference,
and you were actually part of a panel
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that kicked off that conference.
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And I have to say it was a brave
way to start that conference because
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you all had very strong opinions
and I thought it was very brave of
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advanced care planning to kick it off.
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But it was a great discussion.
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Perhaps it'd be really good to, to start
where you first started, I suppose,
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in the work that you're doing now.
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And if you can tell us a little bit
about, you know, your journey since
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you've been diagnosed with dementia.
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Yeah, sure.
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I mean, I remember being on that
panel last year, but I can't even
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remember what we talked about, so
that's good you remember that bit.
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I, uh, in my previous life was a nurse
and I'd had worked in age to dementia care
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and then moved into operating theaters for
quite a long time, and then had switched
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careers, worked as a chef for 10 years
and was working in healthcare sales.
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When I was diagnosed with dementia, I
was a married, working mother, working
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full-time, two teenage sons, studying
part-time at Uni sa and after my
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diagnosis of dementia was basically
told to give up work, give up study,
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get my end of life affairs in order,
and to get acquainted with aged care
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by going to respite once a month.
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It's a pretty unpalatable advice and
it just leads to absolute hopelessness
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and loss of agency really, and everyone
around me was told to take over.
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I think what was lucky for me is that
one, I had been a nurse, and two,
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I was a university student, and one
of my lecturers said to me, well,
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you don't have to give up study.
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You're doing this as a hobby.
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We've got a whole disability
support unit at the university.
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By law, we must provide disability support
for students living with disabilities.
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You are now a student with
acquired disabilities.
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So with a letter from my doctor to
confirm the diagnosis, I then went about
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having proper disability assessment
and whole range of strategies set
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up for me to manage the acquired and
progressive disabilities that I live with.
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And then I thought about, well,
if I'd had a stroke, age 49, I
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wonder what would've happened.
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Well, I know exactly what
would've happened because
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I'd been a nurse, I would've.
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Been hospitalized for the
critical period, I would've been
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then sent to rehabilitation.
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I wouldn't have lost my job
on disclosure of stroke.
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Like I lost my job on
disclosure of dementia.
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I wouldn't have been told
to give up everything.
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I would've been supported with disability
support in whatever capacity that was
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needed to keep living Kate Swiffer's life.
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Instead, with dementia, you're
told to give up and go home
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and basically wait to die.
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So I, I ended up trademarking a
term that I started to call it.
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I started calling that
prescribed disengagement.
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So if you go to the doctor, they
normally prefer to write out a script
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for you, prescription of some medication.
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There wasn't any medication that they
could prescribe me for the type of
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dementia that I've been told I have.
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And so they tell you to give up
and, you know, in however long it
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is, 16 years since my diagnosis.
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I've met one person who wasn't
told to go home and get their
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end of life affairs in order.
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Wow.
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Only one person.
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For all the money in the world being
spent in advocacy organizations such
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as Dementia Australia, Alzheimer's
Disease International, all of the
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research projects meant to improve
the lives of people with dementia.
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That still happens.
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So we haven't actually, the needle
hasn't moved for people with
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dementia, but the excitement of
people without dementia in their work.
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People seem really thrilled with all the
work they're doing, but they're not going.
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But hey, things haven't changed
for people with dementia.
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So a couple of years after
my diagnosis, I started to.
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You know, I suppose Dr. Google, I
definitely headed for Dr. Google
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because even as a nurse I didn't,
I had no idea that young people
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would be diagnosed with dementia.
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I'd never met a young
person with dementia.
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I'd only met much older
people in aged care.
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I eventually met online, a chap
called Dr. Richard Taylor, who
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was a psychologist in America.
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He'd been diagnosed in the
young onset Alzheimer's.
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And I found some excerpts from an essay
and an interview that he'd done, and it
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felt like I was reading about myself.
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So I looked him up.
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I found he had a website.
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I sent him a contact
email on his contact form.
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He got back to me pretty much straight
away, you know, within 24 hours.
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And I always said to Richard,
who's no longer with us, he's one
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of the co-founders of Dementia
Alliance International, but he died
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of throat cancer, not dementia.
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I always said to him that it was
like he saved my life because he
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was this eloquent, brilliant man
with one of the types of dementia,
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still living a really active life.
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So he and I, and a number of people
with dementia met in London at my
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first Alzheimer's Disease International
Conference in 2012, and I think there
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was about 30 people with dementia at that
conference because at that time it was
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the 10 year anniversary of the Scottish
Dementia Working Group, which as a group
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of people with dementia funded by the
country's charity to advocate for change.
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So when I came back to
Australia, I had already started.
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I. I suppose I'll say working with,
and I say that with my tongue and
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cheek because once you've got dementia,
you don't get paid for your work.
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Usually you are expected to work at
the behest of others for their benefit.
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'cause there's no benefit to us.
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And actually you are meant to see it as
they're really doing me a favor, that
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they've given me an opportunity to be an
advocate, which is kind of part of why
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I don't like to be called an advocate
because advocacy hasn't worked otherwise.
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People's lives would've improved
after diagnosis and they haven't,
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services would've improved after
diagnosis and they haven't.
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So, you know, if you think of that lab
rat on the wheel in the lab, in the
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science lab going around and around and
around, research papers might be produced,
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but we aren't getting any change.
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And that's very concerning for me.
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And that's why I moved away from
labeling myself, which other people
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started labeling me as an advocate.
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And I'm not, I don't see myself as an
advocate because I don't want to be
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aligned with any other organization
who has advocates on their books,
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unpaid advocates on their books.
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The economic stigma that people
with dementia face is extraordinary.
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So everybody else was sitting at the
table getting paid except for me.
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And in the early days, I was
often the only person with
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dementia sitting at a table.
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And I started doing global work
after Dementia Alliance International
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was formed, and there'd be nobody
else with dementia at the table.
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How can one person, number one,
represent 60 million people?
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And how is it fair that everybody
else at the table is paid?
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But the one person with dementia is not.
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So there's, there's so many complex issues
around advocacy and most of the self
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advocates, people living with dementia
and in fact the care partners of people
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with dementia who work volunteer as
advocates for dementia organizations,
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we have to sign a contract to say,
we won't say anything negative about
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the organization we advocate for.
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Well, that's okay if you're a paid
staff member, but isn't your role as an
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advocate to say, Hey, that's not okay.
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So I really object to being called an
advocate because, you know, I started
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out thinking it was fantastic that I
could have an opportunity to share my
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story, but in the end, the constant
sharing of one's story, the tragedy of
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like, it's not fun having dementia, I.
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And so to be persistently asked to
stand on a podium somewhere to share
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your story promised by whoever's
invited you to share your story,
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that it's going to create change and
it's gonna help with fundraising.
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That's all it's ever done.
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It's helped with fundraising and you
know, if you were talking about people
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sharing their stories of sexual abuse,
but nothing changed that would be seen
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eventually as causing them more trauma.
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Yeah,
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and you know, when I signed
up as an unpaid advocate, I
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did it with the absolute best
of intentions, thinking that.
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Everyone that was asking me to
get involved to share my story
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had the best of intentions.
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In fact, all they wanted to
do, and still all they want to
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do is wheel out, articulate,
well-dressed people with dementia.
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Occasionally someone will
cry to sharing their story.
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That's really good for
fundraising and journalism.
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But when there's no change, when
year after year after year, reports
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of no change keep coming out, not
just reports, but research papers
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keep saying stigma hasn't changed,
paternalism is still present.
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You've got a question whether we're
doing the right thing by asking people
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to share their stories of trauma.
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It's interesting that you say that, Kate.
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'cause I've even found that myself
personally, that to share my story
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and the reason why I'm doing what
I'm doing now, obviously with a, with
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the loss of a friend and that was the
catalyst for me to do what I'm doing.
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It is something that is expected,
that it is something that I do at no
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cost because I'm raising awareness.
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Yeah.
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I
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was happy to in the beginning too.
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Yeah.
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And, but yet at the same time that when.
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Where raising awareness, you also
have costs associated with that.
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And when I think about my years when
I was working at the Royal Botanic
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Gardens and working with artists and,
and I was producing events there, I had
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a, a producer who was my boss there.
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And she always instilled in me that
you always pay your artists, you
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never expect them to work at no cost.
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Exactly.
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You always pay your artists.
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And that's something that always
sticks in my head, is that if we
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want people to tell their story,
they should be remunerated for that.
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Yeah.
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And in the mental health space now,
they are, there are proper levels
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00:13:14,125 --> 00:13:18,594
of payment, hourly rates, consulting
fees, Western Australian government,
206
00:13:18,594 --> 00:13:21,505
mental health fees for mental health.
207
00:13:21,564 --> 00:13:23,545
Self-advocates is very, very.
208
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Ahead of the pack Really?
209
00:13:25,230 --> 00:13:26,640
And has been for a long time.
210
00:13:26,910 --> 00:13:27,900
Oh, that's good to hear.
211
00:13:28,020 --> 00:13:31,620
And I see dementia as a
condition causing disability.
212
00:13:32,280 --> 00:13:36,840
And that started because my university
said to me, but you don't have to go home.
213
00:13:37,140 --> 00:13:38,130
You don't have to give it up.
214
00:13:38,820 --> 00:13:39,960
We can support you.
215
00:13:39,990 --> 00:13:43,560
You know, if I had a child with
dyslexia, would the school have said
216
00:13:43,830 --> 00:13:45,870
that child can't come to school anymore?
217
00:13:46,050 --> 00:13:46,830
Of course not.
218
00:13:47,580 --> 00:13:49,800
So one of my first symptoms was dyslexia.
219
00:13:50,175 --> 00:13:52,710
Well, well, why did the whole
health system tell me to
220
00:13:52,710 --> 00:13:54,060
give up and get ready to die?
221
00:13:54,600 --> 00:13:58,140
But the university system said, no,
we can support you to keep living.
222
00:13:58,140 --> 00:13:59,970
I. So there's a real disconnect.
223
00:14:00,300 --> 00:14:00,750
Yeah.
224
00:14:00,750 --> 00:14:05,430
And I think that that was the thing that,
that I really was attracted to you and
225
00:14:05,430 --> 00:14:09,570
with how you were explaining that, is
that it just didn't make sense to me.
226
00:14:09,570 --> 00:14:13,200
It doesn't that, that if you were
diagnosed with another condition,
227
00:14:13,710 --> 00:14:15,480
you would be totally different.
228
00:14:16,110 --> 00:14:17,430
Received Totally, yes.
229
00:14:17,430 --> 00:14:18,030
Valued.
230
00:14:18,600 --> 00:14:22,770
You know, like, so I love the way in
which you talk about it because you,
231
00:14:22,830 --> 00:14:25,050
it makes sense what you're saying, but
232
00:14:25,050 --> 00:14:26,580
why is there such a delay?
233
00:14:26,880 --> 00:14:35,190
I know, I'm not sure why, but the research
community generally and the healthcare
234
00:14:35,340 --> 00:14:42,360
community, not just doctors, but overall
the healthcare people still have this 20th
235
00:14:42,360 --> 00:14:44,820
century review of dementia, late stage.
236
00:14:45,495 --> 00:14:47,205
There is nothing we can do.
237
00:14:47,535 --> 00:14:47,925
Yes.
238
00:14:47,925 --> 00:14:50,595
I mean there aren't any
disease modifying drugs yet.
239
00:14:50,655 --> 00:14:53,415
The ones that have been brought out
in the last two or three years or
240
00:14:53,415 --> 00:14:57,075
four years, some have been taken
off the market already because they
241
00:14:57,075 --> 00:15:00,645
were proven to be too harmful and
they knew they were too harmful.
242
00:15:00,645 --> 00:15:06,045
But the charities get excited about
any new drug because partly, and they
243
00:15:06,045 --> 00:15:11,115
promote the release of drugs that probably
aren't safe because they get a lot
244
00:15:11,115 --> 00:15:12,855
of their funding from drug companies.
245
00:15:13,515 --> 00:15:14,415
Doctors want it.
246
00:15:14,505 --> 00:15:16,605
They get a lot of funding
from drug companies.
247
00:15:16,605 --> 00:15:17,685
Researchers want them.
248
00:15:18,015 --> 00:15:20,175
They get lots of funding
from drug companies.
249
00:15:20,895 --> 00:15:25,935
So when the drug company, you know,
Eli Lilly came to me, 'cause I do have
250
00:15:25,935 --> 00:15:31,305
a global profile, would I endorse one
of those drugs that came out in the
251
00:15:31,305 --> 00:15:37,245
last three or four years on personally
endorse them and endorse them on behalf
252
00:15:37,245 --> 00:15:38,715
of Dementia Alliance International?
253
00:15:38,715 --> 00:15:42,075
Because I was the CEO and Chair
at the time and I said no.
254
00:15:42,945 --> 00:15:47,085
Because I personally don't agree
with them, but 50% of our membership
255
00:15:47,985 --> 00:15:49,605
doesn't agree with them coming out.
256
00:15:49,605 --> 00:15:53,685
We think they're unsafe and they
haven't had enough long-term
257
00:15:53,685 --> 00:15:55,005
clinical trials done on them.
258
00:15:55,395 --> 00:15:58,245
And now some of those drugs
have been taken off the market.
259
00:15:59,145 --> 00:16:02,145
Sorry, Kate, just Eli Lilly,
is that a drug company?
260
00:16:02,145 --> 00:16:02,385
Is it?
261
00:16:02,415 --> 00:16:02,655
Yes.
262
00:16:02,655 --> 00:16:03,105
Sorry.
263
00:16:03,105 --> 00:16:03,435
Yeah.
264
00:16:03,760 --> 00:16:04,185
No, no, no.
265
00:16:04,185 --> 00:16:04,725
It's okay.
266
00:16:04,725 --> 00:16:06,975
It's it's just for, I'm
not familiar with it.
267
00:16:06,975 --> 00:16:07,875
So, yeah.
268
00:16:07,935 --> 00:16:13,365
You know, so, so the interesting
thing about that is if you say no to a
269
00:16:13,365 --> 00:16:18,015
charity or you say no to a drug company
wanting you to endorse something,
270
00:16:18,015 --> 00:16:19,845
they never contact you ever again.
271
00:16:20,055 --> 00:16:20,980
You are off the books.
272
00:16:21,780 --> 00:16:24,375
'cause I only want people
who'll endorse their position.
273
00:16:25,155 --> 00:16:30,645
So the minute, as an advocate, you
say something that maybe the dementia
274
00:16:30,645 --> 00:16:36,075
charity or the drug company or the
researcher, I. Doesn't fit their remit.
275
00:16:36,375 --> 00:16:38,385
You are off the books, see you later.
276
00:16:38,835 --> 00:16:42,465
And because you're never paid,
there's no law against that.
277
00:16:43,185 --> 00:16:48,135
If I was an employee of any of those
sectors, they couldn't just dump
278
00:16:48,135 --> 00:16:50,145
me for having a different opinion.
279
00:16:50,805 --> 00:16:54,255
They could call me into the office
and gimme a hard time and give me a
280
00:16:54,255 --> 00:16:56,205
warning, but they couldn't drop me.
281
00:16:56,415 --> 00:17:02,055
I can see why the term disability
rights activist sits so much better
282
00:17:02,055 --> 00:17:08,025
with you because you really are
actively fighting for, for what
283
00:17:08,204 --> 00:17:09,885
you really should be entitled to.
284
00:17:09,885 --> 00:17:10,155
Absolutely.
285
00:17:10,335 --> 00:17:14,835
Because it seems like you, you have,
from what you've described and, and what
286
00:17:14,835 --> 00:17:20,265
I've heard you speak previously about
is that loss of agency that you seem to
287
00:17:20,265 --> 00:17:23,145
have experienced through this process.
288
00:17:23,655 --> 00:17:26,984
So tell me, what is Dementia
Alliance International?
289
00:17:27,105 --> 00:17:30,135
What sort of impact have
you been having globally?
290
00:17:30,645 --> 00:17:36,495
So I think that the primary goal of
Dementia Alliance International was, you
291
00:17:36,495 --> 00:17:38,685
know, a group of people with dementia.
292
00:17:38,985 --> 00:17:43,754
Some of us who met in person in London,
Alzheimer's Disease International,
293
00:17:43,754 --> 00:17:47,985
had promised the late Richard Taylor
for some years, that they would
294
00:17:47,985 --> 00:17:53,205
set up and fund a global group of
people with dementia to have a voice.
295
00:17:53,595 --> 00:17:55,455
And you know, words are cheap.
296
00:17:55,455 --> 00:17:56,295
They never did it.
297
00:17:56,715 --> 00:18:01,514
They promised us at a meeting in
London in 2012 that they would do it.
298
00:18:02,625 --> 00:18:04,514
2013, nothing happened.
299
00:18:04,514 --> 00:18:07,365
So we just went, let's do it ourselves.
300
00:18:07,935 --> 00:18:11,865
And why did eight people with
dementia from three or four different
301
00:18:11,865 --> 00:18:14,565
countries set up their own charity?
302
00:18:15,435 --> 00:18:22,095
Because not one charity or dementia
organization provides adequate services
303
00:18:22,095 --> 00:18:25,750
or support for the very people in
the middle of their vision statement.
304
00:18:25,889 --> 00:18:26,310
Mm-hmm.
305
00:18:26,389 --> 00:18:26,790
So if you
306
00:18:26,790 --> 00:18:27,430
looked at.
307
00:18:28,290 --> 00:18:31,530
All of the dementia charities
all around the world.
308
00:18:31,860 --> 00:18:35,460
It's changed a little bit since
Covid, although they've dropped off.
309
00:18:35,970 --> 00:18:42,960
You'll find loads of support groups in
person or online now for family members
310
00:18:42,960 --> 00:18:44,700
and care partners of people with dementia.
311
00:18:45,180 --> 00:18:47,130
Not really any for us.
312
00:18:47,130 --> 00:18:48,360
Why is that?
313
00:18:49,020 --> 00:18:50,880
Paternalism, who knows?
314
00:18:51,930 --> 00:18:53,700
Total ignorance of our needs.
315
00:18:54,270 --> 00:18:58,530
So we are used for fundraising,
for keeping people without
316
00:18:58,530 --> 00:19:01,140
dementia in their jobs, basically.
317
00:19:01,680 --> 00:19:06,090
And you know, let's look at dementia
friendly communities as an initiative
318
00:19:06,570 --> 00:19:09,270
that I've disagreed with for a long time.
319
00:19:09,690 --> 00:19:15,600
And I know lots of other dementia
people who do refer to themselves
320
00:19:15,600 --> 00:19:19,590
as dementia, self-advocates,
who actually agree with me.
321
00:19:20,400 --> 00:19:24,960
Refuse to allow me to name
them because they know they'll
322
00:19:24,960 --> 00:19:26,580
lose their advocacy roles.
323
00:19:26,580 --> 00:19:31,800
They're being, you know, flown off to
wherever around the world to have a voice.
324
00:19:32,370 --> 00:19:35,070
But what's the point of having
a voice if nothing changes?
325
00:19:35,190 --> 00:19:37,500
And tell me about these communities, Kate.
326
00:19:37,560 --> 00:19:39,600
What is proposed with these communities?
327
00:19:39,630 --> 00:19:39,900
So
328
00:19:39,900 --> 00:19:45,780
dementia friendly communities was an
initiative by people without dementia
329
00:19:46,080 --> 00:19:51,630
to raise awareness and reduce stigma
for people with dementia, improve
330
00:19:51,840 --> 00:19:53,760
the lives of people with dementia.
331
00:19:53,760 --> 00:19:55,140
That's pretty much the remit.
332
00:19:55,920 --> 00:20:00,180
And yet, year after year
after year, research proves
333
00:20:00,180 --> 00:20:02,905
that stigma hasn't improved.
334
00:20:04,265 --> 00:20:07,560
Services and support for people
with dementia hasn't improved.
335
00:20:07,950 --> 00:20:11,910
And in fact, in 2019, the, so
Alzheimer's Disease International,
336
00:20:11,910 --> 00:20:16,500
which is the global charity for people
with dementia and family members,
337
00:20:16,590 --> 00:20:18,060
but they're like the charity that.
338
00:20:18,735 --> 00:20:23,504
A country, a national dementia
organization is a member for them.
339
00:20:24,105 --> 00:20:27,254
So they've got about a hundred, I
don't know, a hundred plus dementia.
340
00:20:27,254 --> 00:20:30,225
Charities from around the
world are members of a DI.
341
00:20:30,885 --> 00:20:34,695
But they do an annual world Alzheimer's
report, and they pick a topic.
342
00:20:34,695 --> 00:20:37,635
This year they're doing dementia
rehabilitation, and that's
343
00:20:37,635 --> 00:20:40,665
one of the things where I have
made a little bit of an impact.
344
00:20:41,205 --> 00:20:46,545
But in 2019, they released their report,
2019 World Alzheimer's Report, and it
345
00:20:46,545 --> 00:20:51,525
was about attitudes, focus on attitudes
and stigma towards people with dementia.
346
00:20:51,825 --> 00:20:53,145
And it was pretty bad.
347
00:20:53,205 --> 00:20:59,085
You know, things like 65% of
healthcare professionals would prefer.
348
00:20:59,625 --> 00:21:01,905
Not to engage with people with dementia.
349
00:21:02,715 --> 00:21:07,005
A lot of healthcare professionals still
think it's part of aging, you know, it's
350
00:21:07,005 --> 00:21:08,865
a normal part of aging, which it isn't.
351
00:21:09,495 --> 00:21:14,055
But interestingly, the World Alzheimer's
report last year, so five years
352
00:21:14,055 --> 00:21:18,345
after the 20 19 1, they did surveys.
353
00:21:18,585 --> 00:21:22,545
They wanted to see whether there'd
been any change, any improvements
354
00:21:22,905 --> 00:21:26,355
in the five years in stigma and
attitudes to people with dementia.
355
00:21:26,595 --> 00:21:27,675
And here's the real rub.
356
00:21:28,365 --> 00:21:30,615
They reported that it's
got worse, not better.
357
00:21:31,785 --> 00:21:36,165
So how can all these initiatives,
such as dementia friendly community,
358
00:21:36,165 --> 00:21:40,515
how can they keep funding them and
asking governments to fund them and
359
00:21:40,515 --> 00:21:45,045
asking benefactors to fund them if
they're not making any positive change?
360
00:21:45,705 --> 00:21:48,795
They are keeping a lot of
people without dementia in jobs.
361
00:21:49,455 --> 00:21:54,255
So if this dementia friendly community
initiative, if we were running.
362
00:21:55,545 --> 00:22:02,235
An Australia wide national LGBTQA
Plus friendly initiative and trying
363
00:22:02,235 --> 00:22:06,615
to develop better attitudes towards
people from those communities.
364
00:22:07,125 --> 00:22:11,025
But the only people employed
in them were heterosexuals.
365
00:22:11,505 --> 00:22:16,335
We'd all be pretty shocked, and some
of us will be pretty outraged if we
366
00:22:16,335 --> 00:22:21,465
were running an Aboriginal Friendly
Australia initiative and the only
367
00:22:21,465 --> 00:22:25,620
people involved and employed in
those initiatives were white people.
368
00:22:27,105 --> 00:22:27,740
We'd all be pretty angry.
369
00:22:28,695 --> 00:22:32,415
Yet we've got all these dementia
friendly community initiatives all over
370
00:22:32,415 --> 00:22:37,845
the world that's meant to include us
and not one of us is employed in them.
371
00:22:37,875 --> 00:22:38,745
What the hell?
372
00:22:39,254 --> 00:22:40,125
Seriously?
373
00:22:40,695 --> 00:22:44,625
And, and then they prove and keep
proving that nothing's changed.
374
00:22:44,985 --> 00:22:49,665
So you know that the definition of madness
or insanity, if you keep doing what
375
00:22:49,665 --> 00:22:53,205
you've always done, but you don't get
the result you want, but you keep doing
376
00:22:53,205 --> 00:22:55,455
what you've always done, who's the idiot?
377
00:22:55,785 --> 00:22:56,955
Who's the insane one?
378
00:22:57,135 --> 00:22:59,205
It's not the people with
dementia in this case.
379
00:22:59,565 --> 00:23:03,075
So it's like I'm a pretty
basic down to earth person.
380
00:23:03,465 --> 00:23:06,825
It does my head in that they can
have these initiatives and they
381
00:23:06,825 --> 00:23:09,885
don't pay people with dementia
to work in these programs.
382
00:23:10,130 --> 00:23:15,110
And look, I love the way you talk about
this because you make me understand it.
383
00:23:15,260 --> 00:23:20,540
For someone who has not been touched
with any family members or obviously
384
00:23:20,540 --> 00:23:24,650
personal connection with anyone with
dementia, I am quite unfamiliar.
385
00:23:24,980 --> 00:23:30,380
But what I love about talking
with you is you make sense to me.
386
00:23:30,440 --> 00:23:32,000
Like, and I'm like, why is that?
387
00:23:32,060 --> 00:23:33,350
Why is it not that?
388
00:23:33,650 --> 00:23:38,060
When we talk about the examples that
you've just given, if we, we had an
389
00:23:38,060 --> 00:23:43,040
LGBTQI plus, you know, organization
that didn't have any inclusion
390
00:23:43,040 --> 00:23:44,990
policy, that would be pretty bad.
391
00:23:45,350 --> 00:23:48,500
And let alone First Nations we
would have the same problem.
392
00:23:48,505 --> 00:23:48,805
Problem.
393
00:23:48,810 --> 00:23:52,100
Yet we're not asking the same
questions when it comes to dementia.
394
00:23:52,280 --> 00:23:55,400
I've been asking it for nearly,
I don't know, eight years.
395
00:23:55,430 --> 00:23:55,550
Yeah.
396
00:23:55,865 --> 00:23:57,380
And it just gets pushed.
397
00:23:57,380 --> 00:23:58,430
I get pushed away.
398
00:23:58,610 --> 00:24:04,250
So, and until we get a large cohort of
people with dementia to all be willing.
399
00:24:04,635 --> 00:24:09,495
And let's say brave or stupid enough
to say, Hey, this is not okay.
400
00:24:09,705 --> 00:24:11,115
We would never get changed.
401
00:24:11,115 --> 00:24:14,805
So what the charities really
have, what's happened with
402
00:24:14,805 --> 00:24:16,425
dementia friendly communities?
403
00:24:16,695 --> 00:24:19,455
From what I see, this
is not evidence-based.
404
00:24:19,455 --> 00:24:20,895
This is what I've witnessed.
405
00:24:21,225 --> 00:24:25,755
The few people that might be involved
in an unpaid volunteer capacity,
406
00:24:25,755 --> 00:24:29,955
maybe one or two people in a
dementia-friendly community initiative
407
00:24:30,315 --> 00:24:32,745
might go to the monthly meetings.
408
00:24:33,195 --> 00:24:37,575
They might do a walk around a building
and say it's not dementia accessible.
409
00:24:38,055 --> 00:24:42,525
They feel like they're being
included, but they're not really
410
00:24:42,525 --> 00:24:46,485
willing to because they've accepted
the prescribed disengagement.
411
00:24:47,295 --> 00:24:48,375
Everyone accepts it.
412
00:24:48,375 --> 00:24:53,205
If you are a regular patient
and your doctor and the nurses,
413
00:24:53,625 --> 00:24:58,635
and then the major charity that
supposedly supports people from that.
414
00:24:59,880 --> 00:25:03,870
Health sector all tell you
there's nothing you can do.
415
00:25:04,650 --> 00:25:07,560
You need to give up everything
you need to get your end of life
416
00:25:07,560 --> 00:25:10,500
affairs in order people believe them.
417
00:25:12,150 --> 00:25:17,940
I believed them to start with, and yes,
I was a nurse, but I wasn't a doctor.
418
00:25:17,970 --> 00:25:23,370
I didn't diagnose people and I had
a a 20th century view of dementia.
419
00:25:23,370 --> 00:25:29,280
But how can someone go from
diagnosis to end stage overnight?
420
00:25:29,640 --> 00:25:34,050
It's illogical, but there's
not much logic out there.
421
00:25:34,620 --> 00:25:38,550
But you know, back to Dementia Reliance
International, we really wanted to have
422
00:25:38,550 --> 00:25:44,250
a global voice, and I think the grass
always looks greener on the other side.
423
00:25:44,250 --> 00:25:49,440
And I suppose I thought that things were
better for people in other countries.
424
00:25:50,190 --> 00:25:54,870
And people from other countries thought
things were better here in Australia.
425
00:25:55,350 --> 00:25:59,310
And what we found out when we all started
meeting regularly and we were probably
426
00:25:59,400 --> 00:26:04,500
like Zoom calls us the early adopters
'cause we don't have any money and you
427
00:26:04,500 --> 00:26:09,270
know, a couple of us funded, setting
up the organization, we discovered
428
00:26:09,270 --> 00:26:11,310
that it was terrible in every country.
429
00:26:11,910 --> 00:26:15,360
So people in Scotland saying, oh
you are so lucky in Australia.
430
00:26:15,365 --> 00:26:16,665
And I go, no, we are not.
431
00:26:17,555 --> 00:26:21,360
And I go, but you are so lucky in
Scotland or America or wherever.
432
00:26:21,930 --> 00:26:26,040
You know, at one point we had
members in over 40 countries, but
433
00:26:26,040 --> 00:26:29,970
for different reasons, we are all
missing out on services and support.
434
00:26:30,840 --> 00:26:31,830
Mm. Why is that?
435
00:26:31,920 --> 00:26:33,150
What's happening to all the money?
436
00:26:33,360 --> 00:26:34,470
Where's the money going?
437
00:26:34,470 --> 00:26:35,790
Because it's not going to us.
438
00:26:36,120 --> 00:26:38,760
And how do you think we
can better support people?
439
00:26:38,760 --> 00:26:44,010
Like you're talking from one
aspect, obviously from a institution
440
00:26:44,040 --> 00:26:48,750
and a government funding,
but you know, it seems to be.
441
00:26:49,110 --> 00:26:52,500
That as you alluded to it, well
actually didn't allude but actually
442
00:26:52,500 --> 00:26:56,850
said that it needs to be a cultural
change or a societal change
443
00:26:56,850 --> 00:26:58,409
that happens in relation to it.
444
00:26:58,740 --> 00:27:03,659
So what can the everyday person
do to support someone who
445
00:27:03,659 --> 00:27:05,310
is diagnosed with dementia?
446
00:27:05,460 --> 00:27:10,169
Tell 'em to get back to living and to
demand disability support to do that.
447
00:27:10,950 --> 00:27:15,720
And if a charity wants 'em to
go and become a self dementia
448
00:27:15,720 --> 00:27:18,480
advocate, this is my fee.
449
00:27:18,960 --> 00:27:21,929
So nobody asked me to work
for free before dementia.
450
00:27:22,260 --> 00:27:22,800
Never.
451
00:27:23,340 --> 00:27:28,230
If I was asked to be involved in
a external project from my regular
452
00:27:28,230 --> 00:27:35,669
working life, they'd be either give
us a quote or this is what we pay you.
453
00:27:36,390 --> 00:27:37,290
Dementia land.
454
00:27:38,010 --> 00:27:43,440
My God, Catherine, I've had people from
all over the world contact me through
455
00:27:43,440 --> 00:27:49,350
my website or however, asking me to be
a consultant for their new business,
456
00:27:49,410 --> 00:27:51,060
setting up a new business on dementia.
457
00:27:51,060 --> 00:27:53,460
They wanna make sure it's supporting
people dementia, and they go,
458
00:27:53,460 --> 00:27:56,610
well, yeah, in the early days,
I would've done it for free.
459
00:27:56,760 --> 00:28:01,590
I would never have even questioned because
you start to think you are not deserving
460
00:28:01,590 --> 00:28:04,920
of the same payment that you were before.
461
00:28:05,520 --> 00:28:06,210
Why is that?
462
00:28:06,690 --> 00:28:07,020
Anyway?
463
00:28:07,225 --> 00:28:13,140
I, I still do some things for no
fee, but I'm very selective now, and
464
00:28:13,500 --> 00:28:19,560
when I started asking for either a,
like a commercial rape fee, a $30
465
00:28:19,560 --> 00:28:23,520
voucher, if you were talking to people
in the disability community more
466
00:28:23,520 --> 00:28:26,220
broadly, they won't accept vouchers.
467
00:28:26,220 --> 00:28:27,510
That's just an insult.
468
00:28:28,080 --> 00:28:29,910
How is a $30 voucher?
469
00:28:30,780 --> 00:28:32,970
Adequate for say, 10 hours work.
470
00:28:33,240 --> 00:28:33,900
That's just not
471
00:28:33,900 --> 00:28:34,379
okay.
472
00:28:34,800 --> 00:28:38,370
So Kate, can you tell me a little
bit about the work that where you
473
00:28:38,370 --> 00:28:42,660
have seen a bit of success and you
have, you mentioned that you've seen
474
00:28:42,660 --> 00:28:44,639
some change with rehabilitation.
475
00:28:45,150 --> 00:28:48,570
Can you talk me through what your
involvement in that has been?
476
00:28:49,260 --> 00:28:55,500
When I went to the World Health
Organization in 2015 as an invited
477
00:28:55,680 --> 00:29:00,960
keynote speaker, and I was representing
Dementia Alliance International, as I
478
00:29:00,960 --> 00:29:07,860
think I was a co-chair at that time, and
the first day of that two day conference
479
00:29:08,129 --> 00:29:10,830
was very much focused on the stats.
480
00:29:10,860 --> 00:29:16,170
You know, I think at that time there was
47 and a half million people was what the
481
00:29:16,680 --> 00:29:22,410
global data was, and they announced that
there was one diagnosis every 3.2 seconds,
482
00:29:23,160 --> 00:29:25,260
and then they spent the whole day.
483
00:29:25,695 --> 00:29:28,635
Focused on research for
a cure, a drug cure.
484
00:29:29,775 --> 00:29:32,115
And by the end of the day
I was getting more and more
485
00:29:32,115 --> 00:29:34,005
annoyed going, what the hell?
486
00:29:34,005 --> 00:29:37,425
They've just told us at the beginning
of this conference, there's 47
487
00:29:37,425 --> 00:29:40,605
and a half million people living
with dementia around the world.
488
00:29:41,415 --> 00:29:48,560
A new diagnosis every 3.2 seconds,
almost 10 million new diagnoses a year.
489
00:29:49,365 --> 00:29:52,605
And all they want to talk
about is research for a cure.
490
00:29:53,115 --> 00:29:56,595
When they were so far away from
that back then, they're still a long
491
00:29:56,595 --> 00:29:58,305
way away from research for a cure.
492
00:29:58,725 --> 00:30:03,435
So I changed my presentation,
which shocked everybody 'cause I
493
00:30:03,435 --> 00:30:07,005
was, you know, have to have your
presentations pre-approved, only
494
00:30:07,005 --> 00:30:08,205
if you're a person with dementia.
495
00:30:08,205 --> 00:30:12,405
By the way, nobody else had to have
their presentation approved and even
496
00:30:12,405 --> 00:30:14,235
now it, they wouldn't do it to me now.
497
00:30:14,235 --> 00:30:17,955
But people with dementia, oh, you
know, we'll help you write the speech.
498
00:30:18,584 --> 00:30:19,814
So it's contrived.
499
00:30:20,084 --> 00:30:23,564
A lot of the stories are very
contrived and controlled.
500
00:30:23,925 --> 00:30:26,175
But anyway, so I changed my
two o'clock in the morning.
501
00:30:26,625 --> 00:30:31,215
I was laying awake, annoyed about the
fact that the only focus was on drugs.
502
00:30:31,754 --> 00:30:35,205
So I changed my speech and
I had three calls to action.
503
00:30:35,205 --> 00:30:42,254
And one was that, you know, there was more
than the research for a cure was balanced
504
00:30:42,254 --> 00:30:47,774
out by research for care, and that
dementia, we should have the same access
505
00:30:47,774 --> 00:30:52,574
to the disability discrimination acts and
the CRPD as any other disabled person.
506
00:30:52,574 --> 00:30:58,604
So the WHO have listed dementia, as they
used to call it the leading cause of
507
00:30:58,604 --> 00:31:04,814
disability for almost 15 years, and now
it's on their website as a major cause
508
00:31:04,814 --> 00:31:07,514
of disability and dependence globally.
509
00:31:08,235 --> 00:31:12,585
So if that's on the World Health
Organization website and has been for
510
00:31:12,585 --> 00:31:18,405
well over a decade, why aren't researchers
embracing that and going, alright, let's
511
00:31:18,405 --> 00:31:23,925
change the post diagnostic pathway to
include disability assessment and support.
512
00:31:24,705 --> 00:31:29,535
And I mean that beyond activities of
daily living, like making a cup of tea.
513
00:31:30,090 --> 00:31:30,510
Mm-hmm.
514
00:31:30,850 --> 00:31:36,524
Anyway, in 2015, I was told by people at
the WHO that they would never support.
515
00:31:37,650 --> 00:31:40,800
Interventions for rehabilitation
for people with dementia.
516
00:31:41,400 --> 00:31:46,650
And then they launched their technical
interventions for dementia rehabilitation
517
00:31:47,550 --> 00:31:49,350
in the last three or four years.
518
00:31:49,889 --> 00:31:54,120
And I've been working as one of the
chief investigators for a research
519
00:31:54,120 --> 00:31:55,710
project at Monash University.
520
00:31:56,129 --> 00:32:00,510
Our project finishes at the end of
June this year, and we have developed
521
00:32:00,600 --> 00:32:05,760
an emo rehabilitation for people with
dementia, for healthcare professionals.
522
00:32:05,760 --> 00:32:08,910
And then that will be developed
also for the general community.
523
00:32:09,389 --> 00:32:10,470
So that's a start.
524
00:32:10,470 --> 00:32:14,490
The next step, of course, is
to get people to engage with
525
00:32:14,490 --> 00:32:17,220
it and for funding to change.
526
00:32:17,220 --> 00:32:24,930
So, so for me, in terms of speech therapy,
because I've got a form of aphasia, I
527
00:32:24,930 --> 00:32:29,430
should have been referred to a speech
therapist straight after my diagnosis.
528
00:32:29,760 --> 00:32:33,420
And if I'd had a stroke and had
aphasia, of course I would've been.
529
00:32:34,215 --> 00:32:39,254
Sent to a speech therapist, but the only
funding for speech therapists for people
530
00:32:39,254 --> 00:32:43,334
with dementia is when you're nearly dead
and you're having trouble swallowing.
531
00:32:43,604 --> 00:32:44,895
Well, it's a bit late really, isn't it?
532
00:32:45,524 --> 00:32:46,725
I like to keep talking.
533
00:32:47,415 --> 00:32:49,155
So, you know, I kind of fluke it.
534
00:32:49,155 --> 00:32:53,324
I have a, I have a, still have a
neighbor who was a speech therapist and,
535
00:32:53,324 --> 00:32:59,745
and in the early days my language was
much more stilted and, you know, the
536
00:32:59,745 --> 00:33:03,314
disability aspect of it was very evident.
537
00:33:03,314 --> 00:33:06,435
And she said, well, so who did you
get referred to as a speech therapist?
538
00:33:06,435 --> 00:33:08,655
I said, I didn't know I needed one.
539
00:33:08,655 --> 00:33:09,824
She said, listen to yourself.
540
00:33:09,824 --> 00:33:10,844
Of course you need one.
541
00:33:11,385 --> 00:33:13,395
If you wait too long, it'll be too late.
542
00:33:14,084 --> 00:33:19,155
But there's no funding, so if you can't
self-fund that, you're screwed, basically.
543
00:33:19,725 --> 00:33:20,864
So that's where we're at.
544
00:33:20,864 --> 00:33:26,024
You know, everything I've done for myself
until getting an NDI qualifying for
545
00:33:26,024 --> 00:33:28,514
NDIS package, now I get some support.
546
00:33:29,084 --> 00:33:32,294
Everything was 'cause I,
number one, I thought of it.
547
00:33:33,330 --> 00:33:36,330
Number two, I found a neuro
physiotherapist who supported
548
00:33:36,330 --> 00:33:37,680
me with a rehab program.
549
00:33:38,040 --> 00:33:40,560
And number three, because
I could afford it.
550
00:33:41,430 --> 00:33:45,480
But if you couldn't afford it and
your doctors and the nurses and
551
00:33:45,480 --> 00:33:50,879
the charities don't tell you to go
and get these disability services,
552
00:33:51,600 --> 00:33:55,379
then people don't even like, people
don't know what they don't know.
553
00:33:55,680 --> 00:33:59,610
So if you tell 'em it's the
end, that's what they believe.
554
00:34:00,090 --> 00:34:01,530
And if it's the end, you give up.
555
00:34:01,830 --> 00:34:02,460
Yeah.
556
00:34:02,580 --> 00:34:06,960
And you are, you are someone that
had a high level of health literacy.
557
00:34:07,620 --> 00:34:08,159
Oh, yeah.
558
00:34:08,219 --> 00:34:08,580
Yeah.
559
00:34:08,699 --> 00:34:09,480
I, I did.
560
00:34:09,480 --> 00:34:15,239
And I, you know, I had a reasonably
healthy iq, so I've got good cognitive
561
00:34:15,239 --> 00:34:22,259
reserve, but if you don't have any health
literacy and the doctor doesn't refer you
562
00:34:22,949 --> 00:34:26,280
and the people around you in that sector.
563
00:34:26,969 --> 00:34:29,909
Whether it's the charities, whether
it's healthcare professionals working
564
00:34:29,909 --> 00:34:34,679
in the field, they don't say to you,
you should be having rehabilitation.
565
00:34:35,159 --> 00:34:36,540
You should be changing your lifestyle.
566
00:34:36,540 --> 00:34:39,419
Stop smoking, stop drinking,
stop whatever, whatever your
567
00:34:39,419 --> 00:34:40,799
lifestyle challenges are.
568
00:34:41,339 --> 00:34:45,270
You know if, if you are at risk of
diabetes or at risk of heart disease
569
00:34:45,569 --> 00:34:50,024
for quite a long time, decades, doctors
have been, it doesn't mean patients do
570
00:34:50,024 --> 00:34:54,750
it, but doctors advise people to lose
weight, stop smoking, reduce drinking, and
571
00:34:54,750 --> 00:34:57,990
other drugs, whatever, dementia, nothing.
572
00:34:58,379 --> 00:34:59,220
No advice.
573
00:35:00,149 --> 00:35:06,810
And now the risk reduction evidence
is proving to be useful for slowing
574
00:35:06,810 --> 00:35:08,490
the progression of dementia.
575
00:35:09,240 --> 00:35:13,589
So why wouldn't you take a healthy
lifestyle approach and try and
576
00:35:13,589 --> 00:35:16,649
make it a, even if it just makes
you feel better, being fitter.
577
00:35:17,190 --> 00:35:17,910
Isn't that better?
578
00:35:17,910 --> 00:35:19,770
Isn't that higher quality of life?
579
00:35:20,610 --> 00:35:24,210
And it's, it's interesting because it's
sort of, you will only rise to the,
580
00:35:24,210 --> 00:35:26,430
the sort of level that is around you.
581
00:35:26,490 --> 00:35:26,580
Mm-hmm.
582
00:35:27,000 --> 00:35:29,310
And what the expectation is.
583
00:35:29,310 --> 00:35:33,030
So if you are getting a diagnosis
and you are being told to get your
584
00:35:33,030 --> 00:35:34,935
end of life affairs in order Yeah.
585
00:35:35,755 --> 00:35:41,280
And you are, you're no longer given your
agency to make decisions in your health
586
00:35:41,280 --> 00:35:43,350
and certainly your professional life.
587
00:35:44,430 --> 00:35:47,850
It's not looking great for the
prognosis or the outcome is it?
588
00:35:48,210 --> 00:35:48,840
Exactly.
589
00:35:49,920 --> 00:35:55,950
You know, if you were diagnosed
with an untreatable cancer, the
590
00:35:55,950 --> 00:35:59,610
doctors and the people around you,
the healthcare professionals around
591
00:35:59,610 --> 00:36:04,290
you wouldn't only tell you to get
your end of life affairs in order.
592
00:36:05,100 --> 00:36:09,240
They would still give you all
sorts of other ways to improve your
593
00:36:09,240 --> 00:36:12,120
wellbeing and to fight for your life.
594
00:36:13,380 --> 00:36:16,380
Try your holistic, you know,
I've had lots of people with.
595
00:36:17,205 --> 00:36:21,705
Inoperable cancers or untreatable
conditions, they're not told to give up.
596
00:36:22,215 --> 00:36:26,745
So, you know, there's just such a
disconnect around dementia and a lack
597
00:36:26,745 --> 00:36:31,275
of education, not only of the general
public, but of healthcare professionals.
598
00:36:32,384 --> 00:36:36,345
And so this sounds like this e module
that you're working on with Monash
599
00:36:36,345 --> 00:36:40,365
University is really going to be quite
a bit of a game changer because it
600
00:36:40,365 --> 00:36:44,444
obviously, it has a two-prong effect
and I'm, I'm not sure whether you can
601
00:36:44,444 --> 00:36:50,025
talk about it, Kate, but I'd be very
fascinated to know how it's different in
602
00:36:50,025 --> 00:36:52,095
its approach, if you can talk about it.
603
00:36:52,665 --> 00:36:58,154
Well, the approach is, you know, I think
it's a nine week e-course and it's, I
604
00:36:58,154 --> 00:37:02,955
can't say where, but it will end up on
a platform where it'll be maintained and
605
00:37:03,105 --> 00:37:06,105
people can access it and do it for free.
606
00:37:06,105 --> 00:37:10,875
Like you can do the MOOC at Tasmania,
uni Tasmania Wicking Institute
607
00:37:10,875 --> 00:37:12,345
has the understanding dementia.
608
00:37:12,825 --> 00:37:16,605
A massive online open course
is what MOOC stands for.
609
00:37:16,935 --> 00:37:20,265
They've got the traumatic brain
injury course, they've now got
610
00:37:20,265 --> 00:37:22,005
a Parkinson's disease course.
611
00:37:22,005 --> 00:37:26,265
They've got a risk reduction
for dementia course.
612
00:37:26,595 --> 00:37:32,325
So it'll, it'll become a course like that
that anybody can sign up and do healthcare
613
00:37:32,325 --> 00:37:34,665
professionals and beyond actually.
614
00:37:34,875 --> 00:37:35,565
That's great.
615
00:37:35,775 --> 00:37:40,245
And you know, it starts out with the,
the human rights aspect of why people
616
00:37:40,245 --> 00:37:44,714
with dementia should be provided with
rehabilitation, if that's what they want.
617
00:37:45,435 --> 00:37:49,755
You know, I've had patients
who had quite severe strokes.
618
00:37:49,755 --> 00:37:51,435
They're not interested in any rehab.
619
00:37:52,035 --> 00:37:52,185
No.
620
00:37:52,185 --> 00:37:52,964
I can't be bothered.
621
00:37:53,325 --> 00:37:58,725
You know, and I, I remember presenting
years ago for, it might have been
622
00:37:58,725 --> 00:38:02,835
Domiciliary Care or Royal District
Nursing Service, someone like that,
623
00:38:03,285 --> 00:38:05,444
you know, a services provider.
624
00:38:06,075 --> 00:38:11,415
And they asked me to come and talk to
all of their team staff, large event on.
625
00:38:12,000 --> 00:38:16,049
The strategies I was using to
live a better life with dementia.
626
00:38:16,589 --> 00:38:18,120
And I did that and it was great.
627
00:38:18,509 --> 00:38:24,930
And afterwards, after the afternoon
tea or morning tea, a very well-meaning
628
00:38:24,930 --> 00:38:27,960
nurse came up, she said, okay,
can I have a little talk to you?
629
00:38:27,960 --> 00:38:32,100
I really need to talk to you about
something I didn't know if a bar of soap.
630
00:38:32,100 --> 00:38:33,359
And I said, oh yeah, sure.
631
00:38:33,359 --> 00:38:37,470
When I'm nearly ready to go, we'll
go and have a chat over there.
632
00:38:38,370 --> 00:38:42,060
So when, when we got to have
a chat, she sat me down.
633
00:38:42,060 --> 00:38:44,370
She was holding my hand and
really worried about me.
634
00:38:44,370 --> 00:38:47,730
She said, you do know that
doesn't matter what you do,
635
00:38:47,730 --> 00:38:49,259
dementia will get you in the end.
636
00:38:49,649 --> 00:38:52,020
And I said, we, I do know that.
637
00:38:52,589 --> 00:38:54,149
And I'm a bit of a death groupie.
638
00:38:54,689 --> 00:39:01,080
I chose my plot for being buried
in when I was 17 and I had my will
639
00:39:01,080 --> 00:39:05,339
and all of that End of life fairs
business done by the time I was 20.
640
00:39:05,819 --> 00:39:07,770
I'm pretty sure you are gonna die too.
641
00:39:07,919 --> 00:39:11,339
But does that mean I wouldn't
wanna live my best life now?
642
00:39:12,210 --> 00:39:17,130
Yeah, she was so distressed that
I was like being Pollyanna in this
643
00:39:17,130 --> 00:39:20,070
whole other approach to dementia.
644
00:39:20,460 --> 00:39:24,000
Well, that's common all around the world.
645
00:39:24,720 --> 00:39:29,640
And you know, if you do well with
cancer and or you go into remission
646
00:39:30,150 --> 00:39:32,310
from cancer, everyone applauds you.
647
00:39:32,550 --> 00:39:33,450
Great job.
648
00:39:34,860 --> 00:39:39,360
If you live well with dementia,
you're accused often defamed
649
00:39:39,365 --> 00:39:41,355
publicly of faking it.
650
00:39:41,575 --> 00:39:42,810
That's kind of not okay.
651
00:39:42,840 --> 00:39:48,240
Even doctors will make diagnoses over
Twitter from having read someone's
652
00:39:48,240 --> 00:39:52,380
book or listen to a five minute
presentation by a person with dementia.
653
00:39:53,160 --> 00:39:53,835
So there's quite.
654
00:39:55,155 --> 00:39:58,155
There's this group of people,
healthcare professionals, and the
655
00:39:58,155 --> 00:40:03,705
community stuck in this old fashioned,
there's nothing you can do to
656
00:40:03,705 --> 00:40:05,745
have a better life with dementia.
657
00:40:05,775 --> 00:40:10,695
And there is, there are hundreds of people
like me around the world now who've said,
658
00:40:10,725 --> 00:40:12,765
no, I'm not going home and waiting to die.
659
00:40:13,005 --> 00:40:13,635
Stuff it.
660
00:40:14,085 --> 00:40:15,405
I'm gonna get back to living.
661
00:40:15,915 --> 00:40:19,725
Whatever you've got wrong with you, if
you've got a disease, get back to living.
662
00:40:20,115 --> 00:40:24,045
It's not something that you hear
people say, but yet, you know,
663
00:40:24,645 --> 00:40:26,505
the thing is, is that we all.
664
00:40:27,285 --> 00:40:30,404
Go out the same way regardless, you know?
665
00:40:30,765 --> 00:40:37,484
So it does come as a surprise to me
that you are not given like any other
666
00:40:37,484 --> 00:40:43,035
diagnosis or any other, you know,
any other diagnosis you're given.
667
00:40:43,095 --> 00:40:47,355
You are told what your rights are or what
your options are and you can make that
668
00:40:47,355 --> 00:40:50,145
decision because you know what it is.
669
00:40:50,384 --> 00:40:54,044
So it's entirely up to that person
whether they go down that path or not.
670
00:40:54,044 --> 00:40:57,315
Like you said, there was other people
that choose not to when they have heart
671
00:40:57,315 --> 00:40:58,995
conditions and those sorts of things.
672
00:40:59,504 --> 00:41:05,444
So what is it that you think that, is
it having more open conversations such
673
00:41:05,444 --> 00:41:08,325
as these that we should be having?
674
00:41:08,325 --> 00:41:10,665
Or what is it, what is it that we can do?
675
00:41:10,665 --> 00:41:11,024
Kate,
676
00:41:12,075 --> 00:41:12,495
do you know?
677
00:41:12,495 --> 00:41:17,565
I, I, I dunno how to answer that,
Catherine, because I used to think
678
00:41:17,565 --> 00:41:22,694
it was having more conversations,
sharing more of these stories and
679
00:41:22,694 --> 00:41:25,395
there whilst they are still important.
680
00:41:26,189 --> 00:41:32,370
And you know, you've probably learned
stuff today about living differently with
681
00:41:32,370 --> 00:41:37,680
dementia that you didn't know before, but
you will share that amongst your personal
682
00:41:37,680 --> 00:41:39,660
and professional networks probably.
683
00:41:40,259 --> 00:41:43,980
And it, you know, it's changed,
potentially change the way
684
00:41:43,980 --> 00:41:45,209
you think about dementia.
685
00:41:45,779 --> 00:41:50,339
But until we have the people diagnosing
and the medical professionals
686
00:41:50,339 --> 00:41:55,290
and healthcare professionals who
support people with dementia support
687
00:41:55,290 --> 00:41:58,919
in inverted commas, 'cause it's
actually not very good support.
688
00:41:59,520 --> 00:42:04,740
And until we have the charities treating
us like people with disabilities,
689
00:42:05,520 --> 00:42:12,660
paying us, employing us, including
us, not tokenistic inclusion, and
690
00:42:12,660 --> 00:42:18,899
whilst those sectors, it's still about
us, without us, whilst those sectors
691
00:42:18,899 --> 00:42:24,540
are still basically campaigning,
advocating for us to give up living.
692
00:42:25,920 --> 00:42:29,610
They may not think they're still
saying that, but they are, you
693
00:42:29,610 --> 00:42:34,980
know, a four or six week course on
living positively with dementia.
694
00:42:35,610 --> 00:42:41,460
That still mostly talks about getting a
end of life affairs in order and doesn't
695
00:42:41,700 --> 00:42:49,500
suggest any referrals to rehab or any
referrals to loss and grief counseling.
696
00:42:49,500 --> 00:42:56,430
So if I was a carer, I can get free loss
and grief counseling through quite a few
697
00:42:56,430 --> 00:43:01,380
channels, but they don't provide that
for me for someone living with dementia.
698
00:43:02,010 --> 00:43:03,570
So I have to pay for that separately.
699
00:43:04,200 --> 00:43:08,490
And let me tell you, losing capacity,
losing function, there's a significant
700
00:43:08,490 --> 00:43:10,170
amount of grief attached to that.
701
00:43:10,830 --> 00:43:15,600
And you know, you get diagnosed
with dementia, you get no support to
702
00:43:15,600 --> 00:43:18,060
live with it, you get no counseling.
703
00:43:18,660 --> 00:43:21,030
For the grief and loss aspect of it.
704
00:43:21,090 --> 00:43:23,760
You might get counseling
for the changes ahead.
705
00:43:24,240 --> 00:43:29,610
If someone lost their husband and they
don't have any support or any grief
706
00:43:29,610 --> 00:43:35,640
counseling and then they end up apathetic
and depressed, do we automatically think
707
00:43:35,640 --> 00:43:37,500
they need to be locked away and medicated?
708
00:43:38,280 --> 00:43:40,560
Maybe we go, oh my God, you are grieving.
709
00:43:40,590 --> 00:43:42,000
Let's get you some support.
710
00:43:42,630 --> 00:43:50,160
And Covid proved that there's a term in
dementia care called the Behavioral and
711
00:43:50,160 --> 00:43:56,070
psychological Symptoms of Dementia, and
it was a term commonly known as BPSD.
712
00:43:56,070 --> 00:44:01,140
And I've been an activist against
BPSD for a long time now, and I
713
00:44:01,140 --> 00:44:04,650
was a very lonely single person
around the whole world, practically,
714
00:44:04,680 --> 00:44:05,970
who was campaigning against it.
715
00:44:05,970 --> 00:44:11,250
And now there's a large growing group
of professionals and researchers who are
716
00:44:11,760 --> 00:44:14,850
on the same page as me in a way, but.
717
00:44:15,600 --> 00:44:22,859
Covid proof that BPSD doesn't really
exist because when Covid came along
718
00:44:22,920 --> 00:44:31,109
and the whole world had to be locked
at home, isolated, no support, no
719
00:44:31,109 --> 00:44:36,990
social life, couldn't go out and
exercise, people started exhibiting
720
00:44:37,589 --> 00:44:44,009
depression, apathy, anger, trying
to escape from hotels or houses.
721
00:44:44,339 --> 00:44:49,680
If you try to escape from the
dementia jail, and it's not a secure
722
00:44:49,680 --> 00:44:56,700
unit, it's a segregated jail, you
are drugged more 'cause that's
723
00:44:56,700 --> 00:44:58,319
not okay if you've got dementia.
724
00:44:58,890 --> 00:45:05,100
So the parallel between dementia
symptoms, which is actually mostly
725
00:45:05,100 --> 00:45:10,350
normal human responses to a really
difficult diagnosis and really
726
00:45:10,410 --> 00:45:13,740
difficult lack of care and support.
727
00:45:14,340 --> 00:45:16,680
Hard to live with, not
being supported to live.
728
00:45:17,370 --> 00:45:21,960
Whereas people with covid, you know,
in Australia, the government took it
729
00:45:21,960 --> 00:45:26,040
from 10 mental health sessions with
a psychologist that you could have 20
730
00:45:26,490 --> 00:45:32,460
people were offered support, all sorts of
support for people exhibiting symptoms of
731
00:45:32,460 --> 00:45:35,790
covid, neuropsychiatric symptoms of covid.
732
00:45:35,820 --> 00:45:37,050
Nobody labeled them that.
733
00:45:37,620 --> 00:45:42,390
But these normal human responses to
dementia or really lousy dementia care
734
00:45:42,390 --> 00:45:47,250
and the violation of our rights has
been pathologized by psychiatrists.
735
00:45:47,250 --> 00:45:53,130
And the Johnson and Johnson funded
the BPSD guidelines and our normal
736
00:45:53,130 --> 00:45:56,970
human responses have been pathologized
and we are medicated and locked away.
737
00:45:57,990 --> 00:45:59,190
Now that's not okay.
738
00:45:59,730 --> 00:46:04,680
So I campaign for all residential
care facilities to be shut down
739
00:46:05,730 --> 00:46:09,240
and for segregated institutional
living to be stopped.
740
00:46:09,240 --> 00:46:13,650
Because you know, if you look at
the CRPD and people with disability.
741
00:46:14,040 --> 00:46:16,560
The right to deinstitutionalization.
742
00:46:16,620 --> 00:46:19,140
There's a massive campaign
of the disability movement.
743
00:46:19,140 --> 00:46:21,180
We need to jump on board
with that campaign.
744
00:46:21,480 --> 00:46:24,120
And so there was just CRPD?
745
00:46:24,419 --> 00:46:24,600
Yeah.
746
00:46:24,629 --> 00:46:27,120
Convention on the rights of
persons with disabilities.
747
00:46:27,299 --> 00:46:27,690
Yeah.
748
00:46:27,690 --> 00:46:28,230
Right.
749
00:46:29,040 --> 00:46:32,310
And can you talk to me a little
bit more about what that is
750
00:46:32,310 --> 00:46:33,899
and what that involves, Kate?
751
00:46:33,899 --> 00:46:38,549
Because as I mentioned, I'm, I'm
unfamiliar with what happens when people
752
00:46:38,549 --> 00:46:42,450
are diagnosed and they get to a point
where you say that they're segregated.
753
00:46:42,450 --> 00:46:45,480
Can you talk me through the challenges
and what that involves and how
754
00:46:45,480 --> 00:46:47,279
that infringes on human rights?
755
00:46:47,880 --> 00:46:52,710
Well, if you need to go onto a nursing
home with dementia, you know, if
756
00:46:52,710 --> 00:46:57,300
you've got no way of being supported
at home currently, no way to be
757
00:46:57,300 --> 00:46:59,760
supported, to continue living at home.
758
00:47:00,030 --> 00:47:04,230
And there's no, almost no alternatives
to institutional settings.
759
00:47:04,230 --> 00:47:07,410
There's a couple now in Australia,
but mostly there's no alternatives.
760
00:47:07,950 --> 00:47:13,500
So our right to equal access to health
has been denied because we're not
761
00:47:13,500 --> 00:47:16,590
being offered rehab, we're not being
offered, you know, rehab, things
762
00:47:16,590 --> 00:47:19,080
like speech therapy, et cetera.
763
00:47:19,110 --> 00:47:20,940
Mostly we're not offered any of that.
764
00:47:20,940 --> 00:47:24,990
So we don't have the same access
to healthcare that we would
765
00:47:24,990 --> 00:47:26,310
have with a different disease.
766
00:47:27,420 --> 00:47:32,040
We don't have access to equal
recognition for the law.
767
00:47:32,190 --> 00:47:36,390
Many of our legal rights are taken away
because we've got cognitive impairment.
768
00:47:36,900 --> 00:47:42,480
We don't have freedom from
torture or cruel, inhumane, or
769
00:47:42,480 --> 00:47:44,040
degrading treatment or punishment.
770
00:47:44,730 --> 00:47:45,455
People who need.
771
00:47:46,080 --> 00:47:50,490
Institutional care are locked
and segregated in dementia units.
772
00:47:51,000 --> 00:47:58,860
So look, NASA stopped segregating black
people and white people in the 1950s.
773
00:47:59,250 --> 00:48:01,680
Why are we still segregating people?
774
00:48:02,460 --> 00:48:04,560
Just because they've got a disease.
775
00:48:04,890 --> 00:48:08,520
The only other people who are
locked away and segregated in our
776
00:48:08,520 --> 00:48:12,000
community are convicted criminals.
777
00:48:12,240 --> 00:48:18,360
So why are we segregating and locking
people with dementia into secure wards?
778
00:48:18,870 --> 00:48:19,890
It is cruel.
779
00:48:19,890 --> 00:48:23,670
And then the, you know, the Royal
Commission has proven the amount of
780
00:48:23,880 --> 00:48:29,070
cruel, inhuman, degrading treatment
and lack of care that people would get.
781
00:48:29,520 --> 00:48:32,940
People with dementia who've
become advocates are exploited.
782
00:48:33,420 --> 00:48:40,590
We don't have the same support to maintain
living independently, which is Article 19.
783
00:48:40,590 --> 00:48:41,580
It's A-C-R-P-D.
784
00:48:42,150 --> 00:48:43,020
The list goes on.
785
00:48:43,020 --> 00:48:45,210
That's like 10 podcasts on its own.
786
00:48:46,200 --> 00:48:51,870
So we, we just aren't treated in the
same way as people with other conditions
787
00:48:52,440 --> 00:48:55,380
and people with other disabilities.
788
00:48:55,650 --> 00:49:00,240
So it seems that, you know,
people, if they are diagnosed,
789
00:49:00,720 --> 00:49:03,210
they need to be asking questions.
790
00:49:03,570 --> 00:49:03,779
Yeah.
791
00:49:03,779 --> 00:49:05,970
But you don't know the questions to ask.
792
00:49:06,120 --> 00:49:07,320
That's the problem.
793
00:49:07,800 --> 00:49:08,759
That's, that's so true.
794
00:49:08,759 --> 00:49:11,700
You don't, I didn't know
the questions to ask.
795
00:49:12,120 --> 00:49:18,300
I didn't know that if I needed
to go into a care home in a comm,
796
00:49:18,450 --> 00:49:19,980
there's not much care in those homes.
797
00:49:19,980 --> 00:49:25,529
We know that from 20 formal inquiries
and a royal commission, we know
798
00:49:25,529 --> 00:49:29,700
that for a lot of those places,
the care is totally substandard.
799
00:49:29,700 --> 00:49:31,110
The food is substandard.
800
00:49:31,680 --> 00:49:35,190
You know, my father-in-law
lost 15 kilos in four weeks
801
00:49:35,190 --> 00:49:37,440
when he first went into care.
802
00:49:37,860 --> 00:49:39,090
Now, that's not care.
803
00:49:39,420 --> 00:49:40,680
That's starvation.
804
00:49:41,115 --> 00:49:44,775
And people get who work in these
places get really defensive about it.
805
00:49:44,955 --> 00:49:46,095
But that's the fact.
806
00:49:46,095 --> 00:49:49,965
We know that from the findings of
the Royal Commission, you know, their
807
00:49:49,965 --> 00:49:54,525
interim report was titled Neglect.
808
00:49:55,485 --> 00:49:59,265
So a lot of people living in
residential settings are neglected.
809
00:49:59,655 --> 00:50:03,795
Their staff, their badly treated,
you know, the families who've put
810
00:50:03,795 --> 00:50:06,975
hidden cameras in rooms, there's
footage of people being, you
811
00:50:06,975 --> 00:50:08,715
know, pillows, smothering them.
812
00:50:08,775 --> 00:50:12,465
There's so much stuff happening,
but there's not too many jail
813
00:50:12,465 --> 00:50:14,745
sentences for those perpetrators.
814
00:50:15,105 --> 00:50:17,445
No accountability for age care providers.
815
00:50:17,715 --> 00:50:20,595
And I'm not sure the New Age
Care Act is gonna fix any of
816
00:50:20,595 --> 00:50:22,935
that because we need to change.
817
00:50:23,550 --> 00:50:25,470
Much more than just the system.
818
00:50:25,560 --> 00:50:30,300
We need to change policies, we need
to change attitudes, we need to stop
819
00:50:30,300 --> 00:50:34,620
the paternalism and the therapeutic
nihilism that is still really evident.
820
00:50:34,710 --> 00:50:37,590
And, you know, harming
people with dementia.
821
00:50:38,400 --> 00:50:40,800
So, you know, we don't lock
kids away who've got cerebral
822
00:50:40,800 --> 00:50:43,105
palsy in institutions anymore.
823
00:50:43,140 --> 00:50:44,610
We once did in some
824
00:50:44,610 --> 00:50:45,420
classrooms.
825
00:50:45,810 --> 00:50:48,385
There's still issues around
that, so Yeah, I know there are.
826
00:50:48,535 --> 00:50:49,800
Yeah, yeah, yeah.
827
00:50:49,860 --> 00:50:50,850
Which is terrible.
828
00:50:51,060 --> 00:50:51,900
It really is.
829
00:50:51,900 --> 00:50:57,600
And can I ask Kate, 'cause obviously
one thing that that comes to my mind
830
00:50:57,630 --> 00:51:01,080
is what they deem legally as capacity.
831
00:51:02,040 --> 00:51:07,530
You know, in the legal terms of, of like
you mentioned earlier that, you know, you
832
00:51:07,530 --> 00:51:09,600
had a will when you were in your twenties.
833
00:51:09,600 --> 00:51:11,970
You, you'd already picked your plot
when you were earlier than that.
834
00:51:11,970 --> 00:51:17,250
I think it was 17, you know, so you are
extremely organized, you know, unusual.
835
00:51:17,400 --> 00:51:18,030
Yeah, unusual.
836
00:51:18,900 --> 00:51:21,480
But what happened when you were diagnosed?
837
00:51:21,540 --> 00:51:25,320
Were you deemed as still having capacity
because you had a diagnosis or, yeah,
838
00:51:25,715 --> 00:51:28,590
I, I still am deemed as having capacity.
839
00:51:28,770 --> 00:51:32,190
I think I, you know, don't quote
me on this, but I think that by
840
00:51:32,190 --> 00:51:39,000
law you have to be deemed to not
have legal capacity by your doctor.
841
00:51:39,090 --> 00:51:42,840
So, you know, the family member can't
just say, oh, mom or dad's got dementia.
842
00:51:43,260 --> 00:51:47,520
They've no longer got capacity, and
I'm making all the financial decisions
843
00:51:47,520 --> 00:51:49,110
and all the lifestyle decisions.
844
00:51:49,440 --> 00:51:53,250
You can't just, even though that
does happen sometimes, how's the
845
00:51:53,250 --> 00:51:58,050
person with changing capacity gonna
fight that, you know, if you, if the
846
00:51:58,050 --> 00:51:59,880
daughter and son or the daughters.
847
00:52:00,465 --> 00:52:03,135
Say, mom or dad need to
be in this nursing home.
848
00:52:03,135 --> 00:52:07,215
And they, they're wandering all the
time, so we better lock them away.
849
00:52:07,215 --> 00:52:10,725
Everyone thinks that's okay
for a person with dementia, but
850
00:52:10,725 --> 00:52:12,435
it's not okay for anybody else.
851
00:52:13,155 --> 00:52:16,125
So we don't, you know,
the world's gone mad.
852
00:52:16,185 --> 00:52:21,285
It's this excitement about dementia
villages, these contrived villages
853
00:52:21,285 --> 00:52:24,105
where only people with dementia
live in them and they've got fake
854
00:52:24,105 --> 00:52:25,695
bus stops and all this other thing.
855
00:52:26,265 --> 00:52:30,135
Uh, we don't have villages for people
with schizophrenia or villages for
856
00:52:30,135 --> 00:52:35,655
people with cancer, or villages
for people with bipolar or villages
857
00:52:35,655 --> 00:52:36,855
for people with motor neuro.
858
00:52:37,605 --> 00:52:40,995
Why is, does the world
seem to think it's okay?
859
00:52:41,505 --> 00:52:43,725
It's just a new form of segregating.
860
00:52:44,445 --> 00:52:49,695
Mm. But the money being tipped into
villages, dementia villages now is scary.
861
00:52:50,805 --> 00:52:54,315
It is interesting 'cause you like just
from, from and, you know, and, and I'm
862
00:52:54,315 --> 00:53:00,675
not educated at all, but it does make me
think of when we used to have institutions
863
00:53:00,675 --> 00:53:03,045
such as Q cottages here in Melbourne.
864
00:53:03,135 --> 00:53:03,225
Mm-hmm.
865
00:53:03,375 --> 00:53:07,905
Uh, where everyone was put,
if they had any, any type of
866
00:53:07,905 --> 00:53:10,600
diagnosis affecting their capacity.
867
00:53:11,260 --> 00:53:13,815
Now we know, we've known
for years that that is not.
868
00:53:14,475 --> 00:53:18,165
The way to go and we, it's not
okay, see a Q cottage, you know,
869
00:53:18,165 --> 00:53:20,175
be built in, in a very long time.
870
00:53:20,355 --> 00:53:20,505
Yeah.
871
00:53:20,565 --> 00:53:28,065
Um, so it, it is interesting that that is
perhaps a school of thought around this.
872
00:53:28,425 --> 00:53:35,175
So do you think we can support someone who
has been diagnosed, you know, from someone
873
00:53:35,175 --> 00:53:37,965
who has actually gone through the process?
874
00:53:38,385 --> 00:53:42,975
How would you suggest someone
can support someone who has
875
00:53:43,005 --> 00:53:45,045
just been given that diagnosis?
876
00:53:45,465 --> 00:53:51,645
Well, I think the best support you can
give a person is to stay in their life.
877
00:53:51,825 --> 00:53:56,505
So if they've been told by the doctor
to give up, to get ready to die,
878
00:53:56,745 --> 00:54:00,675
to get ready for aged care, if all
the healthcare professionals around
879
00:54:00,675 --> 00:54:05,415
them support that narrative and
most still do, and if the Dementia
880
00:54:05,415 --> 00:54:08,955
charities still support your better
get your end of life affairs in order.
881
00:54:09,495 --> 00:54:11,895
It's very hard to convince an individual.
882
00:54:12,120 --> 00:54:13,320
That it can be different.
883
00:54:14,100 --> 00:54:20,130
And you know, the first couple of
years of any trauma situation and a
884
00:54:20,220 --> 00:54:24,660
terminal diagnosis is pretty traumatic,
whether it's dementia, and dementia is
885
00:54:24,660 --> 00:54:26,370
a terminal illness, but so is living.
886
00:54:27,030 --> 00:54:33,275
So if there's no support for the
terminal aspect of this diagnosis
887
00:54:33,330 --> 00:54:36,540
that's been thrown into your lap and
all you are told is you've gotta give
888
00:54:36,540 --> 00:54:39,600
up everything, pretty much people do it.
889
00:54:39,660 --> 00:54:44,580
That's what they do because they
don't know any differently and
890
00:54:44,580 --> 00:54:47,550
nobody around them is saying it
doesn't have to be like that.
891
00:54:48,345 --> 00:54:54,105
But if they got support for the
grief of losing capacity and then
892
00:54:54,105 --> 00:54:58,605
they got disability support to
manage the symptoms of dementia,
893
00:54:59,384 --> 00:55:01,335
they'd probably just keep living.
894
00:55:01,665 --> 00:55:05,715
So, you know, that's changing
everything that's changing.
895
00:55:05,715 --> 00:55:09,525
Government policy research,
it's changing everything.
896
00:55:09,765 --> 00:55:11,115
You know, I can't do that.
897
00:55:11,145 --> 00:55:12,315
One person can't do that.
898
00:55:12,795 --> 00:55:16,545
And, and I moved away from pure
activism into research hoping that
899
00:55:16,545 --> 00:55:20,924
my PhD might shine some light on
why we need to see dementia as a
900
00:55:20,924 --> 00:55:25,095
disability, not just see it, but support
people as people with disabilities.
901
00:55:25,095 --> 00:55:29,985
You know, if I had a road accident and
lost my legs and my job was, I don't
902
00:55:29,985 --> 00:55:33,884
know, stopping shells at the supermarket
where you need your legs for that, would
903
00:55:33,884 --> 00:55:35,865
I be told to go home and wait to die?
904
00:55:36,195 --> 00:55:41,265
Or would I be fitted with prosthetics
or a wheelchair and given rehab and
905
00:55:41,265 --> 00:55:43,695
emotional support to get back to living?
906
00:55:43,935 --> 00:55:45,404
And would my employer.
907
00:55:45,944 --> 00:55:50,595
Have either provided me with a different
job that I could do without two legs
908
00:55:50,984 --> 00:55:55,214
or put in some disability support
to allow me to keep doing that job.
909
00:55:55,904 --> 00:55:57,705
By law, that's what they have to do.
910
00:55:58,305 --> 00:55:58,544
Mm-hmm.
911
00:55:59,265 --> 00:56:02,564
But with dementia, we l younger
people, they lose their jobs.
912
00:56:03,104 --> 00:56:06,134
And that's the thing that really
struck a chord with me is that it
913
00:56:06,134 --> 00:56:09,915
brought me back to when I had my car
accident and I think of the support
914
00:56:09,915 --> 00:56:15,404
that I was given at that time, and the
rehabilitation and the psychological
915
00:56:15,404 --> 00:56:17,325
support and counseling I was given.
916
00:56:17,625 --> 00:56:23,024
I was grieving the loss of what
my life was or at that stage,
917
00:56:23,024 --> 00:56:25,515
and, and I was grieving that loss.
918
00:56:25,964 --> 00:56:31,424
And it really does surprise me
that this isn't thought in the
919
00:56:31,424 --> 00:56:36,734
same manner as a disability that
can be supported and managed.
920
00:56:37,095 --> 00:56:40,725
Mm. Because when you talk about
it, Kate, it makes perfect sense.
921
00:56:40,845 --> 00:56:43,470
Mm. To me anyway.
922
00:56:43,650 --> 00:56:47,970
It does to me for sure, and it does
to lots of others, but it, it's a
923
00:56:47,970 --> 00:56:54,240
large space to change and there's
more than just doctors or other
924
00:56:54,240 --> 00:57:00,330
healthcare professionals or charities or
policies like they all have to change.
925
00:57:00,779 --> 00:57:06,540
Like any change is really
difficult and there are academics
926
00:57:06,540 --> 00:57:10,170
particularly who've really pushed
back against some of my thinking.
927
00:57:10,770 --> 00:57:15,480
And sure, some of my thinking
hasn't been evidence-based research.
928
00:57:15,810 --> 00:57:20,400
It's been based on anecdotal
evidence and what I've witnessed and
929
00:57:20,400 --> 00:57:22,200
what I've personally experienced.
930
00:57:22,200 --> 00:57:28,560
But I can remember walking into a a one
day conference seminar in Queensland
931
00:57:28,710 --> 00:57:32,490
quite a few years ago now, and I
used to be a very regular blogger.
932
00:57:32,490 --> 00:57:36,960
I used to write almost daily
blog on my website, and I've been
933
00:57:36,960 --> 00:57:41,460
campaigning against BPSD for a long
time, and often just on my website.
934
00:57:42,030 --> 00:57:46,770
I walked into this thing in Queensland,
I'd flown in probably that morning,
935
00:57:47,310 --> 00:57:53,250
got there and this academic who's high
up in the BPSD field, and basically
936
00:57:53,280 --> 00:57:57,480
her whole career has been focused
on that, pretty much yelled at me.
937
00:57:57,510 --> 00:57:57,870
Who did?
938
00:57:57,870 --> 00:58:03,300
I think I was saying that BPS, you
know, questioning BPSD, I've done
939
00:58:03,300 --> 00:58:04,980
30 years of research on this topic.
940
00:58:05,610 --> 00:58:11,040
People take it as a personal attack
instead of going, wow, that's
941
00:58:11,040 --> 00:58:12,600
another way of thinking about it.
942
00:58:12,630 --> 00:58:13,710
Let's explore that.
943
00:58:14,340 --> 00:58:20,640
And now that I am a researcher, I
wanna explore that as a researcher.
944
00:58:21,330 --> 00:58:26,460
I'm not just gonna say that person's
wrong 'cause it doesn't fit my
945
00:58:26,790 --> 00:58:29,160
thinking or my past research.
946
00:58:29,160 --> 00:58:33,960
You know, Stephen Hawking found
his own research to be wrong and
947
00:58:33,960 --> 00:58:35,490
he was quite happy to admit that.
948
00:58:36,120 --> 00:58:40,920
But if someone's got a profile
and done 30 or 40 years.
949
00:58:41,580 --> 00:58:45,210
And got recognized in a
particular field and someone
950
00:58:45,210 --> 00:58:47,130
comes along and says That's wrong.
951
00:58:48,090 --> 00:58:49,260
They take it personally.
952
00:58:49,830 --> 00:58:54,180
So if you've, your legacy as a
researcher has been a legacy promoting
953
00:58:54,240 --> 00:58:59,250
BPSD or some drug or some, I don't
know, validation theory or something,
954
00:58:59,520 --> 00:59:02,670
and then someone, some one person
comes along and questions it.
955
00:59:03,090 --> 00:59:04,770
It's hard not to take it personally.
956
00:59:05,520 --> 00:59:08,610
And so people push back
pretty hard actually.
957
00:59:09,180 --> 00:59:13,890
And then when you are just the person
with dementia, and I say that because
958
00:59:13,890 --> 00:59:19,170
I've been told so many times by
professionals, I've be sitting in a
959
00:59:19,170 --> 00:59:23,970
consultation, I'll stand up to question
something or to suggest something.
960
00:59:24,540 --> 00:59:31,800
And I've had a professor stand up
and yell at me against rehabilitation
961
00:59:31,800 --> 00:59:32,790
for people with dementia.
962
00:59:32,790 --> 00:59:38,250
So I was on the steering committee to
develop the first national dementia.
963
00:59:38,654 --> 00:59:40,634
Guidelines, clinical
guidelines in Australia.
964
00:59:40,634 --> 00:59:45,134
It's quite a few years ago now, and it
was in our last two day forum in Sydney
965
00:59:45,134 --> 00:59:50,055
and we all had these round tables and
I was given the opportunity to pitch
966
00:59:50,145 --> 00:59:52,575
for why we should have rehabilitation.
967
00:59:53,055 --> 00:59:58,455
And this professor stands
up and absolutely yelled
968
00:59:58,455 --> 00:59:59,865
at me from across the room.
969
01:00:00,105 --> 01:00:04,935
And we are not having rehabilitation
in these guidelines apart from, you
970
01:00:04,935 --> 01:00:08,174
know, a bit of stuff to help people
make a cup of tea, the support
971
01:00:08,174 --> 01:00:09,915
for activities of daily living.
972
01:00:10,845 --> 01:00:16,004
And then he said, and what
would you know anyway, you are
973
01:00:16,004 --> 01:00:18,254
just a person with dementia.
974
01:00:19,214 --> 01:00:23,325
And he picked his stuff up the table,
the chair went flying behind him and he
975
01:00:23,325 --> 01:00:24,899
stormed out the room and didn't come back.
976
01:00:25,964 --> 01:00:29,984
Now that's a true story, and I
could give you hundreds of stories
977
01:00:29,984 --> 01:00:33,314
like that that have happened to
me or who that has happened to.
978
01:00:33,314 --> 01:00:34,845
Friends of mine with dementia.
979
01:00:35,805 --> 01:00:40,634
So the lack of respect for
another viewpoint is high.
980
01:00:41,024 --> 01:00:46,424
And then three years later when rehab
dementia was becoming fashionable, I
981
01:00:46,665 --> 01:00:50,865
paid for my ticket to go and listen
to this guy who yelled at me and
982
01:00:50,865 --> 01:00:54,705
said, we were never having it do
a presentation on rehabilitation.
983
01:00:54,705 --> 01:00:56,625
I sat right in the front row
and looked him in the eye.
984
01:00:57,825 --> 01:01:01,245
So that's the kind of shit that people
with dementia have to put up with.
985
01:01:01,800 --> 01:01:04,230
If you dare to speak up, it's pretty wild.
986
01:01:04,530 --> 01:01:10,110
It is wild, but it's also, that doesn't
surprise me too much because I think
987
01:01:10,110 --> 01:01:15,090
that you know, of late, certainly
here in Victoria, there has been a few
988
01:01:15,120 --> 01:01:20,220
national papers and news organizations
that have actually been shining the
989
01:01:20,220 --> 01:01:27,000
spotlight on medical misogyny and
the fact that you also have the added
990
01:01:27,000 --> 01:01:32,670
disadvantage of not only having dementia,
but also I'm a woman, being a woman.
991
01:01:33,120 --> 01:01:33,240
Mm-hmm.
992
01:01:34,050 --> 01:01:38,520
So, well, and, and I cop,
so I got three challenges.
993
01:01:38,850 --> 01:01:42,330
Dementia, female and ageism.
994
01:01:42,360 --> 01:01:47,640
So from diagnosis, I'm now
treated the ageism towards
995
01:01:47,640 --> 01:01:49,050
me, even though I'm younger.
996
01:01:49,320 --> 01:01:52,890
I'm not younger now, but I
was, so, I cop ageism as well.
997
01:01:54,120 --> 01:01:54,720
Yeah.
998
01:01:54,720 --> 01:02:01,080
And, and that's a, you know, the
reason why I really wanted to have
999
01:02:01,080 --> 01:02:06,540
you on the show, Kate, is because
you challenge the status quo of
1000
01:02:06,540 --> 01:02:08,850
what people's perceptions are.
1001
01:02:08,910 --> 01:02:13,920
And I, when you talk for me, it
just seems to be common sense.
1002
01:02:14,490 --> 01:02:21,090
And what I like about it is that seems to
me your, your way of thinking and the way
1003
01:02:21,090 --> 01:02:26,490
in which you speak, it encourages people
to ask questions in their situation.
1004
01:02:26,670 --> 01:02:29,820
And if they find themselves in a
situation like that, or supporting
1005
01:02:29,820 --> 01:02:34,590
someone who has been diagnosed
with dementia, it's to actually ask
1006
01:02:34,590 --> 01:02:37,305
questions about how you can live better.
1007
01:02:38,080 --> 01:02:40,690
How, how can we support you
to keep living your life?
1008
01:02:41,050 --> 01:02:41,140
Yeah.
1009
01:02:41,140 --> 01:02:42,759
What do you still want to do?
1010
01:02:43,240 --> 01:02:48,460
You know, my beautiful late aunt who
I was really close to, she died, I
1011
01:02:48,460 --> 01:02:53,680
don't know, maybe five years ago now,
lived at a, a regional town called Port
1012
01:02:53,680 --> 01:03:00,279
Lincoln in South Australia, and she had
very early, you know, mild Alzheimer's
1013
01:03:00,310 --> 01:03:02,259
from about the age of 90 or 91.
1014
01:03:02,259 --> 01:03:07,090
She was diagnosed with it, and at
that point she could still drive.
1015
01:03:07,270 --> 01:03:08,590
We should call her aunt and center.
1016
01:03:09,100 --> 01:03:13,990
And the minute she got a aged
care package to support her
1017
01:03:14,080 --> 01:03:15,279
'cause now she's got dementia.
1018
01:03:15,820 --> 01:03:20,020
All that the care staff wanted to
do was force her to have a shower.
1019
01:03:20,740 --> 01:03:24,790
She could still shower herself, in
fact, she could still do some gardening.
1020
01:03:25,180 --> 01:03:28,180
What she wanted, 'cause she did get
to the point she couldn't drive.
1021
01:03:28,930 --> 01:03:33,340
What she wanted was for the
carer, the paid carer, to take
1022
01:03:33,340 --> 01:03:35,140
her down to her local church.
1023
01:03:35,655 --> 01:03:38,535
Stay with her, help her set
up her painting equipment.
1024
01:03:38,535 --> 01:03:39,675
'cause she used to teach painting.
1025
01:03:39,675 --> 01:03:43,785
She'd been teaching painting at the
local church four years, took me six
1026
01:03:43,785 --> 01:03:49,275
months and three flights and back
to Port Lincoln for the organization
1027
01:03:49,275 --> 01:03:51,015
to agree to do that for her.
1028
01:03:51,825 --> 01:03:55,275
So this person-centered
care is just a tick box.
1029
01:03:55,275 --> 01:04:00,225
Poor Tom Kit, the late Tom Kit Wood,
he'd be horrified to see that almost
1030
01:04:00,225 --> 01:04:03,525
nobody yet provides person-centered care.
1031
01:04:04,245 --> 01:04:08,865
So why should you have to campaign
and advocate for someone to make
1032
01:04:08,865 --> 01:04:10,905
that sort of choice about their life?
1033
01:04:11,205 --> 01:04:12,165
Oh, she's got dementia.
1034
01:04:12,165 --> 01:04:13,245
Shouldn't know what she wants.
1035
01:04:13,245 --> 01:04:16,485
Now, one of the staff said
to me, I said, yes, she does.
1036
01:04:16,905 --> 01:04:21,375
She absolutely knows what she wants
and she doesn't want some stranger
1037
01:04:21,675 --> 01:04:25,785
coming into her home and making her
take her clothes off in front of them.
1038
01:04:26,175 --> 01:04:30,015
You know, how many people do I know
that would be happy for a stranger to
1039
01:04:30,015 --> 01:04:32,175
come in and force 'em to have a shower?
1040
01:04:32,520 --> 01:04:33,450
Would you like that?
1041
01:04:33,750 --> 01:04:34,709
I wouldn't like that.
1042
01:04:34,919 --> 01:04:38,370
And generally at a time
that is nonsensical too.
1043
01:04:39,120 --> 01:04:39,959
Yes.
1044
01:04:40,529 --> 01:04:41,310
Yes.
1045
01:04:41,730 --> 01:04:44,549
And she was like me, she
was a really early bird.
1046
01:04:44,819 --> 01:04:47,759
She would wanna have her shower
at six o'clock in the morning,
1047
01:04:47,759 --> 01:04:49,529
not 10 30 when they turned up.
1048
01:04:50,220 --> 01:04:54,180
And, you know, the whole system
to me doesn't make sense.
1049
01:04:54,750 --> 01:05:00,089
And you know, I, I often say that
healthcare professionals should
1050
01:05:00,089 --> 01:05:03,419
have to have the disease before
they can look after those people.
1051
01:05:04,290 --> 01:05:10,049
And of course, that's totally illogical
and unacceptable and stupid really.
1052
01:05:10,709 --> 01:05:14,189
But until you've had a baby, you don't
know what it's like to have a baby.
1053
01:05:14,640 --> 01:05:19,649
So if you are a young midwife, 23 years
old, never had a baby, and you are
1054
01:05:19,649 --> 01:05:24,419
telling a woman who's on her fourth
baby what to do and what not to do,
1055
01:05:24,839 --> 01:05:26,370
kind of doesn't make sense, does it?
1056
01:05:27,089 --> 01:05:29,009
But the system says,
listen to the midwife.
1057
01:05:29,945 --> 01:05:30,235
Yeah.
1058
01:05:30,240 --> 01:05:30,510
Yeah.
1059
01:05:30,540 --> 01:05:33,990
So we're all about systems and
it's about power and who's got more
1060
01:05:33,990 --> 01:05:38,100
knowledge than you, but Experience
council, lots of knowledge.
1061
01:05:38,730 --> 01:05:45,240
It does, and I can only hope that,
as you said, that there is some
1062
01:05:45,420 --> 01:05:49,590
organizations and some state governments
that are actually, and I, I haven't
1063
01:05:49,590 --> 01:05:53,100
interviewed, but I've, I've certainly
spoken with Lived Experience Australia.
1064
01:05:53,460 --> 01:05:58,500
And the fact that there are organizations
that are actually recognizing the
1065
01:05:58,500 --> 01:06:02,730
value of lived experience and making
sure that there's roles where those
1066
01:06:02,730 --> 01:06:08,910
people are renumerated for their
experience and can share how the systems
1067
01:06:08,910 --> 01:06:14,280
and the processes can be improved
and become more people centered.
1068
01:06:14,640 --> 01:06:14,940
You know,
1069
01:06:15,330 --> 01:06:17,370
and there's a little bit
of movement, you know?
1070
01:06:18,180 --> 01:06:18,240
Yeah.
1071
01:06:18,240 --> 01:06:22,890
I mean, I have been, I suppose,
ranting about the real inclusion or
1072
01:06:22,890 --> 01:06:27,210
the lack of real inclusion of people
with dementia for quite a long time.
1073
01:06:27,210 --> 01:06:28,680
And I, I did a presentation.
1074
01:06:29,355 --> 01:06:32,865
Oh, six o'clock in the morning
recently to the Nevada Dementia
1075
01:06:32,865 --> 01:06:36,075
Friendly Community Organization.
1076
01:06:36,615 --> 01:06:40,694
And they got all this amazing funding and
they wanted me to talk about other things
1077
01:06:40,694 --> 01:06:47,714
in my research and, and I talked about my
dislike of dementia friendly community.
1078
01:06:47,714 --> 01:06:49,485
And of course the ears pricked up.
1079
01:06:49,485 --> 01:06:50,865
They were very interested in it.
1080
01:06:51,464 --> 01:06:53,745
And I said to, with all this
money, how many people with
1081
01:06:53,745 --> 01:06:55,005
dementia are working for you?
1082
01:06:55,509 --> 01:06:56,535
Oh, oh, none.
1083
01:06:56,805 --> 01:06:57,915
Said, well, there's your problem.
1084
01:06:58,755 --> 01:07:00,105
It's not really inclusion.
1085
01:07:00,464 --> 01:07:03,285
It's a couple of people with
dementia there as advisors.
1086
01:07:03,285 --> 01:07:06,525
They attend the meetings, they're
having a good time at the meetings.
1087
01:07:07,095 --> 01:07:12,165
But what about the other, I don't know how
many people in Nevada have got dementia,
1088
01:07:12,165 --> 01:07:17,174
but what about the other 60,000 people
who aren't being included in anything?
1089
01:07:18,194 --> 01:07:22,785
So the few advocates that are busy
as advocates for dementia charities
1090
01:07:22,815 --> 01:07:25,275
or a university or a a group.
1091
01:07:25,665 --> 01:07:30,375
They won't complain about it 'cause
they love having something to do.
1092
01:07:31,214 --> 01:07:33,285
So think about this,
your life's taken away.
1093
01:07:33,285 --> 01:07:35,955
You've prescribed disengagement,
you lose your job.
1094
01:07:35,955 --> 01:07:39,254
Or if you are like my auntie or volunteer
you, you're not allowed to do that
1095
01:07:39,254 --> 01:07:41,685
anymore unless you fight hard for it.
1096
01:07:42,225 --> 01:07:45,285
You mostly lose lots of
your family and friends.
1097
01:07:45,285 --> 01:07:46,035
They disappear.
1098
01:07:46,365 --> 01:07:50,234
You know, if you get cancer or some
other horrid illness, people around you
1099
01:07:50,234 --> 01:07:52,604
promise to be there till your last breath.
1100
01:07:53,504 --> 01:07:58,754
If you get dementia, 90% of
them disappear mostly quietly.
1101
01:07:59,084 --> 01:08:00,134
You just never see them again.
1102
01:08:00,645 --> 01:08:02,265
They don't invite you to anything anymore.
1103
01:08:02,714 --> 01:08:06,375
And that's not intentional,
not meant to hurt you.
1104
01:08:06,705 --> 01:08:07,964
People dunno what to say.
1105
01:08:07,964 --> 01:08:09,044
They dunno what to do.
1106
01:08:09,345 --> 01:08:13,604
They've got this last century attitude
and impression of what they think
1107
01:08:13,604 --> 01:08:16,455
dementia is and it's too hard for them.
1108
01:08:16,455 --> 01:08:17,774
So they just disappear.
1109
01:08:18,314 --> 01:08:20,984
So you've had that experience,
you've lost everything.
1110
01:08:21,135 --> 01:08:25,109
And then a charity says, oh,
well we'd love you to come and.
1111
01:08:25,649 --> 01:08:31,559
Review some documentation or we'll fly
you up to Canberra to tell your story at
1112
01:08:31,559 --> 01:08:35,729
Parliament House, friends of dementia,
parliament, house some, well, all of
1113
01:08:35,729 --> 01:08:37,049
a sudden you've got your life back.
1114
01:08:37,380 --> 01:08:39,330
Even in those, not the
life you used to have.
1115
01:08:40,319 --> 01:08:41,549
You're being flown around.
1116
01:08:41,549 --> 01:08:44,939
You're being taken out for meals,
you've got lovely hotel accommodation.
1117
01:08:45,330 --> 01:08:46,979
Who wouldn't wanna keep doing that?
1118
01:08:47,099 --> 01:08:48,840
And who cares if you're not being paid?
1119
01:08:49,229 --> 01:08:55,469
In the early days, I was like that,
but it's, it took some time for me to
1120
01:08:55,469 --> 01:09:03,269
reflect on all this time and effort
I was putting in for no return.
1121
01:09:04,649 --> 01:09:09,809
And I don't mean no personal
return because there is some value.
1122
01:09:10,260 --> 01:09:12,359
I've been a volunteer
since I was a little kid.
1123
01:09:12,359 --> 01:09:13,500
I love volunteering.
1124
01:09:13,950 --> 01:09:17,609
So I thought it was just, you
know, a new way of volunteering.
1125
01:09:17,850 --> 01:09:21,180
But then you read another world out
someone's report or another research
1126
01:09:21,180 --> 01:09:25,559
paper or listen to someone on a
podcast and you hear that people
1127
01:09:25,559 --> 01:09:31,080
with dementia are still being harmed,
neglected, told to give up everything.
1128
01:09:31,649 --> 01:09:32,910
So there's no change.
1129
01:09:32,910 --> 01:09:34,979
Stigma's the same as it was 40 years ago.
1130
01:09:35,430 --> 01:09:39,689
Attitudes towards people with dementia
haven't changed in the last five years.
1131
01:09:40,019 --> 01:09:43,680
For all the money that's being
spent on these awareness campaigns,
1132
01:09:44,160 --> 01:09:45,540
it's got worse, not better.
1133
01:09:45,990 --> 01:09:48,120
So that's because it's still about us.
1134
01:09:48,120 --> 01:09:50,490
Without us, has to be.
1135
01:09:51,240 --> 01:09:54,660
And you know, I didn't think
the, the world's taken on
1136
01:09:54,660 --> 01:09:56,460
dementia-friendly community initiatives.
1137
01:09:56,985 --> 01:10:00,165
And they're not giving it up because
for organizations there's so much
1138
01:10:00,165 --> 01:10:04,395
money in it and governments have de
invested in health and social care
1139
01:10:04,875 --> 01:10:08,295
and they've put money into dementia
friendly community initiatives globally.
1140
01:10:08,865 --> 01:10:10,485
And it's got worse for us.
1141
01:10:10,485 --> 01:10:10,995
Not better.
1142
01:10:11,865 --> 01:10:12,375
How is that?
1143
01:10:12,375 --> 01:10:12,945
Okay.
1144
01:10:13,845 --> 01:10:15,645
But nobody else is speaking up about it.
1145
01:10:15,830 --> 01:10:17,145
So it's pretty wild.
1146
01:10:17,745 --> 01:10:18,645
It is wild.
1147
01:10:18,645 --> 01:10:24,915
Kate and I can't thank you enough
for sharing your story with us today.
1148
01:10:25,305 --> 01:10:28,515
I love the fact that
you aren't an advocate.
1149
01:10:29,025 --> 01:10:33,375
The fact that you are actually an
activist is what we need in this world.
1150
01:10:33,405 --> 01:10:36,615
And I really thank you
for, for being that.
1151
01:10:37,020 --> 01:10:37,920
Thank you Catherine.
1152
01:10:38,310 --> 01:10:44,310
Now, Kate, tell me how can end of
life planning be more accessible
1153
01:10:44,310 --> 01:10:47,640
and empowering for someone who's
been diagnosed with dementia?
1154
01:10:47,910 --> 01:10:53,760
I think that the question, we could
reframe it for everybody because I've
1155
01:10:53,760 --> 01:11:00,030
spent a lot of time with families of
somebody, a patient who's dying or fam,
1156
01:11:00,060 --> 01:11:07,950
people in my own family who are sick
and facing death, and nobody seems to
1157
01:11:07,950 --> 01:11:11,310
be empowered to wanna do that stuff.
1158
01:11:11,490 --> 01:11:13,200
It's not just people with dementia.
1159
01:11:13,560 --> 01:11:17,700
We do it because that's actually
pretty much the only advice we get.
1160
01:11:18,360 --> 01:11:20,670
Quick, hurry up, get your
end of life affairs in order.
1161
01:11:21,120 --> 01:11:26,670
And most of us, if you haven't done it
like I had, most people do get that done.
1162
01:11:27,510 --> 01:11:31,530
But I think that we should be
teaching all this end of life
1163
01:11:31,530 --> 01:11:33,135
stuff to our kids at school.
1164
01:11:34,559 --> 01:11:38,670
So they learn to drive when they're
16, so they're gonna be out on the
1165
01:11:38,670 --> 01:11:44,760
road maybe killing somebody or going
through an accident themselves.
1166
01:11:45,480 --> 01:11:46,590
They get taught to vote.
1167
01:11:48,690 --> 01:11:52,740
Why aren't we teaching them that one
of these days their life is gonna end.
1168
01:11:53,429 --> 01:11:56,580
Let's have these conversations
before people get sick.
1169
01:11:57,750 --> 01:12:04,470
Because once you are sick, your focus
is on, on the stress of being sick.
1170
01:12:06,000 --> 01:12:11,790
And so if we can get those conversations
starting much, much, much earlier, I
1171
01:12:11,790 --> 01:12:16,470
think it would be a way of empowering
people just to embrace the fact that
1172
01:12:16,559 --> 01:12:18,059
one of these days you're gonna die.
1173
01:12:18,510 --> 01:12:24,929
Like my kids have done some of their end
of life stuff, and that was only because
1174
01:12:24,960 --> 01:12:29,910
when I updated my will and enduring
power attorney and all those things.
1175
01:12:30,525 --> 01:12:31,965
After my diagnosis.
1176
01:12:31,995 --> 01:12:35,985
'cause you know, I'd done it a long time
before and the lawyer said to me, so
1177
01:12:36,045 --> 01:12:37,695
you know, you said you've got two sons.
1178
01:12:37,695 --> 01:12:38,475
How old are they?
1179
01:12:38,475 --> 01:12:39,735
Are they over 18?
1180
01:12:40,485 --> 01:12:43,965
And I said, well, yeah they are, but
surely they don't need that doing yet.
1181
01:12:44,055 --> 01:12:47,235
And he said, well, they're
driving, aren't they?
1182
01:12:47,235 --> 01:12:49,845
They're on the road and they're
probably drinking occasionally
1183
01:12:49,845 --> 01:12:51,435
being idiots 'cause they're boys.
1184
01:12:51,975 --> 01:12:57,855
What if they have a major brain injury
and they're end up on life support?
1185
01:12:58,185 --> 01:13:01,905
I said, but yeah, surely the doctors
at the hospital would talk to me,
1186
01:13:01,905 --> 01:13:03,495
well, you're no longer the guardian.
1187
01:13:03,765 --> 01:13:04,785
They're over 18.
1188
01:13:05,145 --> 01:13:10,935
And yes, mostly medical people
and hospital staff would include
1189
01:13:10,935 --> 01:13:12,555
a family member if that happened.
1190
01:13:13,095 --> 01:13:15,915
But there might be a time where
they don't, there might be a
1191
01:13:15,915 --> 01:13:19,995
particular doctor who says, no,
you are not the legal guardian.
1192
01:13:20,265 --> 01:13:22,815
So because of that, we had
long conversation with our
1193
01:13:22,815 --> 01:13:24,945
kids and we did that with them.
1194
01:13:25,065 --> 01:13:28,665
They didn't have enough assets and stuff
to worry about a will at that stage.
1195
01:13:29,174 --> 01:13:30,705
But at least they knew.
1196
01:13:31,065 --> 01:13:34,634
So one son did not want
any life support stuff.
1197
01:13:34,905 --> 01:13:35,804
Don't keep me alive.
1198
01:13:35,804 --> 01:13:37,724
If, if it's a ventilator, forget it.
1199
01:13:38,085 --> 01:13:39,165
Do not resuscitate.
1200
01:13:39,644 --> 01:13:40,934
And the other one said, do everything.
1201
01:13:41,384 --> 01:13:46,035
If they'd waited until they were 60 and
got a diagnosis of cancer or something
1202
01:13:46,035 --> 01:13:51,434
else, they might have found that
way too hard because it's too close.
1203
01:13:51,585 --> 01:13:54,045
Whereas at that point, it wasn't close.
1204
01:13:54,705 --> 01:13:58,184
So these are conversations we need
to have really early, you know, when
1205
01:13:58,184 --> 01:14:02,384
my, my father was dying and I said to
him, dad, you need to get all this.
1206
01:14:02,865 --> 01:14:03,495
No, no, no.
1207
01:14:03,495 --> 01:14:04,665
You are the nurse in the family.
1208
01:14:04,665 --> 01:14:06,405
You'll be able to make the decisions.
1209
01:14:06,795 --> 01:14:08,804
But there's four siblings in my family.
1210
01:14:09,465 --> 01:14:12,405
Nobody agrees on what
should happen in the end.
1211
01:14:12,405 --> 01:14:13,575
I just stayed away from her.
1212
01:14:14,385 --> 01:14:16,125
Because there's no point arguing.
1213
01:14:16,125 --> 01:14:20,175
And if you, if you haven't told
somebody what your wishes are, then
1214
01:14:20,355 --> 01:14:24,825
how can you expect your family or your
wife or husband to know that stuff?
1215
01:14:25,665 --> 01:14:31,275
So I think having those conversations
really early reduces the need to empower
1216
01:14:31,275 --> 01:14:32,535
people to do it when they're sick.
1217
01:14:32,685 --> 01:14:33,465
'cause already done.
1218
01:14:33,810 --> 01:14:37,350
Look, Kate, you're not gonna get
any disagreement from me whatsoever.
1219
01:14:37,470 --> 01:14:38,250
The listeners will know.
1220
01:14:38,280 --> 01:14:40,560
Listeners will know
that I'm a big advocate.
1221
01:14:41,040 --> 01:14:46,800
You know, you talked about a midwife
and, and having children previously, and
1222
01:14:47,070 --> 01:14:49,620
that's what I think is just hilarious.
1223
01:14:49,710 --> 01:14:53,010
We don't all have children, but
we're all going to die, yet we don't
1224
01:14:53,250 --> 01:14:58,710
actually get the extensive education
I you have to go through when you,
1225
01:14:58,710 --> 01:15:00,900
which is stupid when you're pregnant.
1226
01:15:00,900 --> 01:15:05,280
Like, you know, like we went to, you know,
midwife classes and I can't even remember
1227
01:15:05,280 --> 01:15:09,450
how you'd, what you'd refer them as,
but, you know, the, the prenatal classes.
1228
01:15:09,455 --> 01:15:10,795
Classes, I think something like that.
1229
01:15:10,795 --> 01:15:10,915
Yeah.
1230
01:15:11,135 --> 01:15:15,315
You know, and it was weeks that you
had to attend the two of you as a
1231
01:15:15,315 --> 01:15:22,110
couple, you know, and not everyone has
children and wants children, but yet,
1232
01:15:22,500 --> 01:15:25,110
you know, we provide education in that.
1233
01:15:25,110 --> 01:15:28,955
But yet the one thing that we'll
all have to experience, and
1234
01:15:29,190 --> 01:15:31,590
we don't cover it in school.
1235
01:15:32,040 --> 01:15:32,400
You know.
1236
01:15:32,535 --> 01:15:32,995
No, I know.
1237
01:15:33,090 --> 01:15:36,420
And we should, there's a whole
lot more, a lot of life skill
1238
01:15:36,420 --> 01:15:38,340
stuff that gets missed at school.
1239
01:15:38,970 --> 01:15:40,410
Healthy relationships.
1240
01:15:40,440 --> 01:15:43,200
You know, you, you pretty much,
everyone's gonna couple up.
1241
01:15:44,100 --> 01:15:44,310
Yeah.
1242
01:15:44,310 --> 01:15:44,550
Whether
1243
01:15:44,550 --> 01:15:47,670
it's a guy and a girl, or whether
it's two guys or two girls.
1244
01:15:47,670 --> 01:15:48,270
It's irrelevant.
1245
01:15:48,270 --> 01:15:49,170
Nearly everyone, yeah.
1246
01:15:49,350 --> 01:15:50,400
Has a relationship.
1247
01:15:50,820 --> 01:15:55,260
There's no training or education about
healthy relationships, healthy conflict.
1248
01:15:55,560 --> 01:15:56,340
There's none of that.
1249
01:15:56,340 --> 01:16:00,090
There's not enough information
about managing your money.
1250
01:16:00,810 --> 01:16:04,290
There's no information about
death and dying at all.
1251
01:16:04,950 --> 01:16:07,950
And yet it's the one thing
we all know is gonna happen.
1252
01:16:08,400 --> 01:16:13,530
I got asked in a q and a session once,
and it had been about, you know, talking
1253
01:16:13,530 --> 01:16:15,900
about dementia and end of life stuff.
1254
01:16:15,900 --> 01:16:20,550
And the first question in the q
and a session, which came from a
1255
01:16:20,550 --> 01:16:23,995
minister of Christian religion,
she said to me, it's okay.
1256
01:16:24,690 --> 01:16:29,100
My question is how does it feel for
you knowing that you're gonna die?
1257
01:16:31,200 --> 01:16:36,120
And I was slightly taken aback
because most religious clerics
1258
01:16:36,120 --> 01:16:40,110
have done funerals and christenings
and they know about death.
1259
01:16:40,680 --> 01:16:40,830
Yeah.
1260
01:16:40,830 --> 01:16:44,460
And so I, I sort of thought
before I responded, I didn't
1261
01:16:44,460 --> 01:16:46,470
wanna do a knee jerk response.
1262
01:16:47,130 --> 01:16:49,410
So I said, well that's a
really interesting question.
1263
01:16:49,410 --> 01:16:52,680
So I'm gonna answer the
question with a question.
1264
01:16:53,100 --> 01:16:55,860
I said, how does it feel for
you knowing you are gonna die?
1265
01:16:56,370 --> 01:17:02,250
And then I said, the one guarantee I have
is that the 600 people in this room today.
1266
01:17:02,760 --> 01:17:04,500
We are all gonna die.
1267
01:17:05,130 --> 01:17:09,600
So just 'cause I've got a
diagnosis of dementia doesn't
1268
01:17:09,600 --> 01:17:11,010
mean you guys aren't gonna die.
1269
01:17:11,550 --> 01:17:14,520
I kind of put it right back on
them, I feel is the weirdest
1270
01:17:14,520 --> 01:17:16,050
question ever to be asked.
1271
01:17:16,650 --> 01:17:19,440
What's it feel like knowing
you're gonna die, but maybe
1272
01:17:19,440 --> 01:17:20,820
everyone thinks they're immortal.
1273
01:17:20,820 --> 01:17:21,210
I don't know.
1274
01:17:21,240 --> 01:17:23,700
Until, until you get sick and then
people start thinking about it.
1275
01:17:24,150 --> 01:17:25,410
It's crazy, isn't it?
1276
01:17:25,860 --> 01:17:26,490
Yeah.
1277
01:17:27,060 --> 01:17:27,690
Yeah.
1278
01:17:28,020 --> 01:17:30,000
And especially given who it came from.
1279
01:17:30,060 --> 01:17:30,720
Like,
1280
01:17:31,830 --> 01:17:35,790
well, and we shouldn't judge people,
I suppose, you know, maybe nobody
1281
01:17:35,790 --> 01:17:38,640
thinks about dying until they get sick.
1282
01:17:38,730 --> 01:17:43,230
Almost nobody, I think, think
about dying until they go,
1283
01:17:43,230 --> 01:17:44,910
oh Jesus, this might kill me.
1284
01:17:44,910 --> 01:17:46,290
I better think about dying.
1285
01:17:46,650 --> 01:17:49,080
And it forces you to like,
you've got no choice then.
1286
01:17:49,080 --> 01:17:53,730
But you know, trying to deal with
your end of life documentation when
1287
01:17:53,730 --> 01:17:56,910
you've got a difficult diagnosis,
when you're grieving about.
1288
01:17:57,585 --> 01:17:58,995
A life that might be lost.
1289
01:17:58,995 --> 01:18:01,275
Your life or a life that might be changed.
1290
01:18:01,665 --> 01:18:04,125
It's pretty hard to do
all that practical stuff.
1291
01:18:04,215 --> 01:18:04,725
Yeah,
1292
01:18:04,785 --> 01:18:04,935
it
1293
01:18:04,935 --> 01:18:05,295
really
1294
01:18:05,295 --> 01:18:05,715
is.
1295
01:18:05,805 --> 01:18:06,585
Yeah, it is.
1296
01:18:06,585 --> 01:18:07,275
So it's,
1297
01:18:07,275 --> 01:18:09,945
but look, Kate, I can't
thank you enough for today.
1298
01:18:09,945 --> 01:18:13,815
It's just been so lovely to reconnect
with you and, and have a chat.
1299
01:18:13,815 --> 01:18:14,625
It's been brilliant.
1300
01:18:14,805 --> 01:18:15,705
Yeah, my pleasure.
1301
01:18:15,705 --> 01:18:17,835
Really lovely to, to reconnect as well.
1302
01:18:17,835 --> 01:18:19,755
Catherine, thank you so
much for inviting me.
1303
01:18:20,085 --> 01:18:23,685
I'd love to come back in a couple of
years and tell you about my PhD too.
1304
01:18:23,805 --> 01:18:24,645
That will be really good.
1305
01:18:25,035 --> 01:18:26,805
I look forward to our next chat.
1306
01:18:27,285 --> 01:18:27,675
Yeah.
1307
01:18:27,765 --> 01:18:28,305
Terrific.
1308
01:18:28,455 --> 01:18:29,325
Thanks Catherine.
1309
01:18:29,955 --> 01:18:30,825
Thanks, Kate.
1310
01:18:33,764 --> 01:18:37,184
We hope you enjoyed today's
episode of Don't Be Caught Dead,
1311
01:18:37,514 --> 01:18:39,254
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1312
01:18:40,004 --> 01:18:44,264
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1313
01:18:44,264 --> 01:18:46,214
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1314
01:18:46,335 --> 01:18:49,964
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1315
01:18:49,964 --> 01:18:51,705
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1317
01:18:56,025 --> 01:18:57,764
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01:18:59,535 --> 01:19:00,525
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1320
01:19:00,525 --> 01:19:04,455
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Resources
- Research & Publications: Kate Swaffer
- Visit the Website: Dementia Redress Project
- Read the Blog: Restraint: is it still ok?
- Visit the Website: Dementia Alliance International
- Visit the Website: World Health Organization Dementia Resources
- Make Death Admin Easy with The Critical Info Platform
A simple system to sort your personal paperwork for when your information becomes critical.
- My Loved One Has Died, What Do I Do Now?
Our guide, ‘My Loved One Has Died, What Do I Do Now?’ provides practical steps for the hours and days after a loved one's death. Purchase it here.
- Support Services
If you're feeling overwhelmed by grief, find support through our resources and bereavement services here.
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