Reclaiming Agency: Living Beyond Dementia

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 She’s here to shake things up, challenge the world’s outdated views on dementia, and show us why living well with this diagnosis is not just possible, but a right.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.

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.

Resources Mentioned:

Dementia Alliance International

World Health Organization Dementia Resources

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Transcript

0:02

NASA stopped segregating black people and white people in the 1950s. Why are we still segregating people? Just because they've got a disease. The only other people who are locked away and segregated in our community. Are convicted criminals. So why are we segregating and locking people with dementia into secure wards? Welcome to Don't Be Caught Dead, a podcast encouraging open conversations about dying and the death of a loved one. I'm your host, Catherine Ashton, founder of Critical Info, and I'm helping to bring your stories of death back to life because while you may not be ready to die, at least you can be prepared. Don't be caught dead. Acknowledges the lands of the cool Coolen nations and recognizes their connection to land, sea, and community. We pay our respects to their elders past, present, and emerging, and extend that respect to all Aboriginal and Torres Strait Islander and First Nation peoples around the globe. Today I'm speaking with Kate Swaffer. Kate was diagnosed with a rare young onset dementia shortly before her 50th birthday. Kate co-founded Dementia Alliance International and has served as chair chief executive officer and board member. She was the first person living with dementia to give a keynote address to the World Health Organization, and in 2017 she was named South Australian of the Year. These are just a few of the accomplishments that Kate has managed to achieve in her time. Thank you so much for being with us, Kate. Thank you for having me. Katherine. Now Kate, we had the pleasure of meeting each other in Adelaide late last year at an advance care planning conference, and you were actually part of a panel that kicked off that conference. And I have to say it was a brave way to start that conference because you all had very strong opinions and I thought it was very brave of advanced care planning to kick it off. But it was a great discussion. Perhaps it'd be really good to, to start where you first started, I suppose, in the work that you're doing now. And if you can tell us a little bit about, you know, your journey since you've been diagnosed with dementia. Yeah, sure. I mean, I remember being on that panel last year, but I can't even remember what we talked about, so that's good you remember that bit. I, uh, in my previous life was a nurse and I'd had worked in age to dementia care and then moved into operating theaters for quite a long time, and then had switched careers, worked as a chef for 10 years and was working in healthcare sales. When I was diagnosed with dementia, I was a married, working mother, working full-time, two teenage sons, studying part-time at Uni sa and after my diagnosis of dementia was basically told to give up work, give up study, get my end of life affairs in order, and to get acquainted with aged care by going to respite once a month. It's a pretty unpalatable advice and it just leads to absolute hopelessness and loss of agency really, and everyone around me was told to take over. I think what was lucky for me is that one, I had been a nurse, and two, I was a university student, and one of my lecturers said to me, well, you don't have to give up study. You're doing this as a hobby. We've got a whole disability support unit at the university. By law, we must provide disability support for students living with disabilities. You are now a student with acquired disabilities. So with a letter from my doctor to confirm the diagnosis, I then went about having proper disability assessment and whole range of strategies set up for me to manage the acquired and progressive disabilities that I live with. And then I thought about, well, if I'd had a stroke, age 49, I wonder what would've happened. Well, I know exactly what would've happened because I'd been a nurse, I would've. Been hospitalized for the critical period, I would've been then sent to rehabilitation. I wouldn't have lost my job on disclosure of stroke. Like I lost my job on disclosure of dementia. I wouldn't have been told to give up everything. I would've been supported with disability support in whatever capacity that was needed to keep living Kate Swiffer's life. Instead, with dementia, you're told to give up and go home and basically wait to die. So I, I ended up trademarking a term that I started to call it. I started calling that prescribed disengagement. So if you go to the doctor, they normally prefer to write out a script for you, prescription of some medication. There wasn't any medication that they could prescribe me for the type of dementia that I've been told I have. And so they tell you to give up and, you know, in however long it is, 16 years since my diagnosis. I've met one person who wasn't told to go home and get their end of life affairs in order. Wow. Only one person. For all the money in the world being spent in advocacy organizations such as Dementia Australia, Alzheimer's Disease International, all of the research projects meant to improve the lives of people with dementia. That still happens. So we haven't actually, the needle hasn't moved for people with dementia, but the excitement of people without dementia in their work. People seem really thrilled with all the work they're doing, but they're not going. But hey, things haven't changed for people with dementia. So a couple of years after my diagnosis, I started to. You know, I suppose Dr. Google, I definitely headed for Dr. Google because even as a nurse I didn't, I had no idea that young people would be diagnosed with dementia. I'd never met a young person with dementia. I'd only met much older people in aged care. I eventually met online, a chap called Dr. Richard Taylor, who was a psychologist in America. He'd been diagnosed in the young onset Alzheimer's. And I found some excerpts from an essay and an interview that he'd done, and it felt like I was reading about myself. So I looked him up. I found he had a website. I sent him a contact email on his contact form. He got back to me pretty much straight away, you know, within 24 hours. And I always said to Richard, who's no longer with us, he's one of the co-founders of Dementia Alliance International, but he died of throat cancer, not dementia. I always said to him that it was like he saved my life because he was this eloquent, brilliant man with one of the types of dementia, still living a really active life. So he and I, and a number of people with dementia met in London at my first Alzheimer's Disease International Conference in 2012, and I think there was about 30 people with dementia at that conference because at that time it was the 10 year anniversary of the Scottish Dementia Working Group, which as a group of people with dementia funded by the country's charity to advocate for change. So when I came back to Australia, I had already started. I. I suppose I'll say working with, and I say that with my tongue and cheek because once you've got dementia, you don't get paid for your work. Usually you are expected to work at the behest of others for their benefit.'cause there's no benefit to us. And actually you are meant to see it as they're really doing me a favor, that they've given me an opportunity to be an advocate, which is kind of part of why I don't like to be called an advocate because advocacy hasn't worked otherwise. People's lives would've improved after diagnosis and they haven't, services would've improved after diagnosis and they haven't. So, you know, if you think of that lab rat on the wheel in the lab, in the science lab going around and around and around, research papers might be produced, but we aren't getting any change. And that's very concerning for me. And that's why I moved away from labeling myself, which other people started labeling me as an advocate. And I'm not, I don't see myself as an advocate because I don't want to be aligned with any other organization who has advocates on their books, unpaid advocates on their books. The economic stigma that people with dementia face is extraordinary. So everybody else was sitting at the table getting paid except for me. And in the early days, I was often the only person with dementia sitting at a table. And I started doing global work after Dementia Alliance International was formed, and there'd be nobody else with dementia at the table. How can one person, number one, represent 60 million people? And how is it fair that everybody else at the table is paid? But the one person with dementia is not. So there's, there's so many complex issues around advocacy and most of the self advocates, people living with dementia and in fact the care partners of people with dementia who work volunteer as advocates for dementia organizations, we have to sign a contract to say, we won't say anything negative about the organization we advocate for. Well, that's okay if you're a paid staff member, but isn't your role as an advocate to say, Hey, that's not okay. So I really object to being called an advocate because, you know, I started out thinking it was fantastic that I could have an opportunity to share my story, but in the end, the constant sharing of one's story, the tragedy of like, it's not fun having dementia, I. And so to be persistently asked to stand on a podium somewhere to share your story promised by whoever's invited you to share your story, that it's going to create change and it's gonna help with fundraising. That's all it's ever done. It's helped with fundraising and you know, if you were talking about people sharing their stories of sexual abuse, but nothing changed that would be seen eventually as causing them more trauma. Yeah, and you know, when I signed up as an unpaid advocate, I did it with the absolute best of intentions, thinking that. Everyone that was asking me to get involved to share my story had the best of intentions. In fact, all they wanted to do, and still all they want to do is wheel out, articulate, well-dressed people with dementia. Occasionally someone will cry to sharing their story. That's really good for fundraising and journalism. But when there's no change, when year after year after year, reports of no change keep coming out, not just reports, but research papers keep saying stigma hasn't changed, paternalism is still present. You've got a question whether we're doing the right thing by asking people to share their stories of trauma. It's interesting that you say that, Kate.'cause I've even found that myself personally, that to share my story and the reason why I'm doing what I'm doing now, obviously with a, with the loss of a friend and that was the catalyst for me to do what I'm doing. It is something that is expected, that it is something that I do at no cost because I'm raising awareness. Yeah. I was happy to in the beginning too. Yeah. And, but yet at the same time that when. Where raising awareness, you also have costs associated with that. And when I think about my years when I was working at the Royal Botanic Gardens and working with artists and, and I was producing events there, I had a, a producer who was my boss there. And she always instilled in me that you always pay your artists, you never expect them to work at no cost. Exactly. You always pay your artists. And that's something that always sticks in my head, is that if we want people to tell their story, they should be remunerated for that. Yeah. And in the mental health space now, they are, there are proper levels of payment, hourly rates, consulting fees, Western Australian government, mental health fees for mental health. Self-advocates is very, very. Ahead of the pack Really? And has been for a long time. Oh, that's good to hear. And I see dementia as a condition causing disability. And that started because my university said to me, but you don't have to go home. You don't have to give it up. We can support you. You know, if I had a child with dyslexia, would the school have said that child can't come to school anymore? Of course not. So one of my first symptoms was dyslexia. Well, well, why did the whole health system tell me to give up and get ready to die? But the university system said, no, we can support you to keep living. I. So there's a real disconnect. Yeah. And I think that that was the thing that, that I really was attracted to you and with how you were explaining that, is that it just didn't make sense to me. It doesn't that, that if you were diagnosed with another condition, you would be totally different. Received Totally, yes. Valued. You know, like, so I love the way in which you talk about it because you, it makes sense what you're saying, but why is there such a delay? I know, I'm not sure why, but the research community generally and the healthcare community, not just doctors, but overall the healthcare people still have this 20th century review of dementia, late stage. There is nothing we can do. Yes. I mean there aren't any disease modifying drugs yet. The ones that have been brought out in the last two or three years or four years, some have been taken off the market already because they were proven to be too harmful and they knew they were too harmful. But the charities get excited about any new drug because partly, and they promote the release of drugs that probably aren't safe because they get a lot of their funding from drug companies. Doctors want it. They get a lot of funding from drug companies. Researchers want them. They get lots of funding from drug companies. So when the drug company, you know, Eli Lilly came to me, 'cause I do have a global profile, would I endorse one of those drugs that came out in the last three or four years on personally endorse them and endorse them on behalf of Dementia Alliance International? Because I was the CEO and Chair at the time and I said no. Because I personally don't agree with them, but 50% of our membership doesn't agree with them coming out. We think they're unsafe and they haven't had enough long-term clinical trials done on them. And now some of those drugs have been taken off the market. Sorry, Kate, just Eli Lilly, is that a drug company? Is it? Yes. Sorry. Yeah. No, no, no. It's okay. It's it's just for, I'm not familiar with it. So, yeah. You know, so, so the interesting thing about that is if you say no to a charity or you say no to a drug company wanting you to endorse something, they never contact you ever again. You are off the books.'cause I only want people who'll endorse their position. So the minute, as an advocate, you say something that maybe the dementia charity or the drug company or the researcher, I. Doesn't fit their remit. You are off the books, see you later. And because you're never paid, there's no law against that. If I was an employee of any of those sectors, they couldn't just dump me for having a different opinion. They could call me into the office and gimme a hard time and give me a warning, but they couldn't drop me. I can see why the term disability rights activist sits so much better with you because you really are actively fighting for, for what you really should be entitled to. Absolutely. Because it seems like you, you have, from what you've described and, and what I've heard you speak previously about is that loss of agency that you seem to have experienced through this process. So tell me, what is Dementia Alliance International? What sort of impact have you been having globally? So I think that the primary goal of Dementia Alliance International was, you know, a group of people with dementia. Some of us who met in person in London, Alzheimer's Disease International, had promised the late Richard Taylor for some years, that they would set up and fund a global group of people with dementia to have a voice. And you know, words are cheap. They never did it. They promised us at a meeting in London in 2012 that they would do it. 2013, nothing happened. So we just went, let's do it ourselves. And why did eight people with dementia from three or four different countries set up their own charity? Because not one charity or dementia organization provides adequate services or support for the very people in the middle of their vision statement. Mm-hmm. So if you looked at. All of the dementia charities all around the world. It's changed a little bit since Covid, although they've dropped off. You'll find loads of support groups in person or online now for family members and care partners of people with dementia. Not really any for us. Why is that? Paternalism, who knows? Total ignorance of our needs. So we are used for fundraising, for keeping people without dementia in their jobs, basically. And you know, let's look at dementia friendly communities as an initiative that I've disagreed with for a long time. And I know lots of other dementia people who do refer to themselves as dementia, self-advocates, who actually agree with me. Refuse to allow me to name them because they know they'll lose their advocacy roles. They're being, you know, flown off to wherever around the world to have a voice. But what's the point of having a voice if nothing changes? And tell me about these communities, Kate. What is proposed with these communities? So dementia friendly communities was an initiative by people without dementia to raise awareness and reduce stigma for people with dementia, improve the lives of people with dementia. That's pretty much the remit. And yet, year after year after year, research proves that stigma hasn't improved. Services and support for people with dementia hasn't improved. And in fact, in 2019, the, so Alzheimer's Disease International, which is the global charity for people with dementia and family members, but they're like the charity that. A country, a national dementia organization is a member for them. So they've got about a hundred, I don't know, a hundred plus dementia. Charities from around the world are members of a DI. But they do an annual world Alzheimer's report, and they pick a topic. This year they're doing dementia rehabilitation, and that's one of the things where I have made a little bit of an impact. But in 2019, they released their report, 2019 World Alzheimer's Report, and it was about attitudes, focus on attitudes and stigma towards people with dementia. And it was pretty bad. You know, things like 65% of healthcare professionals would prefer. Not to engage with people with dementia. A lot of healthcare professionals still think it's part of aging, you know, it's a normal part of aging, which it isn't. But interestingly, the World Alzheimer's report last year, so five years after the 20 19 1, they did surveys. They wanted to see whether there'd been any change, any improvements in the five years in stigma and attitudes to people with dementia. And here's the real rub. They reported that it's got worse, not better. So how can all these initiatives, such as dementia friendly community, how can they keep funding them and asking governments to fund them and asking benefactors to fund them if they're not making any positive change? They are keeping a lot of people without dementia in jobs. So if this dementia friendly community initiative, if we were running. An Australia wide national LGBTQA Plus friendly initiative and trying to develop better attitudes towards people from those communities. But the only people employed in them were heterosexuals. We'd all be pretty shocked, and some of us will be pretty outraged if we were running an Aboriginal Friendly Australia initiative and the only people involved and employed in those initiatives were white people. We'd all be pretty angry. Yet we've got all these dementia friendly community initiatives all over the world that's meant to include us and not one of us is employed in them. What the hell? Seriously? And, and then they prove and keep proving that nothing's changed. So you know that the definition of madness or insanity, if you keep doing what you've always done, but you don't get the result you want, but you keep doing what you've always done, who's the idiot? Who's the insane one? It's not the people with dementia in this case. So it's like I'm a pretty basic down to earth person. It does my head in that they can have these initiatives and they don't pay people with dementia to work in these programs. And look, I love the way you talk about this because you make me understand it. For someone who has not been touched with any family members or obviously personal connection with anyone with dementia, I am quite unfamiliar. But what I love about talking with you is you make sense to me. Like, and I'm like, why is that? Why is it not that? When we talk about the examples that you've just given, if we, we had an LGBTQI plus, you know, organization that didn't have any inclusion policy, that would be pretty bad. And let alone First Nations we would have the same problem. Problem. Yet we're not asking the same questions when it comes to dementia. I've been asking it for nearly, I don't know, eight years. Yeah. And it just gets pushed. I get pushed away. So, and until we get a large cohort of people with dementia to all be willing. And let's say brave or stupid enough to say, Hey, this is not okay. We would never get changed. So what the charities really have, what's happened with dementia friendly communities? From what I see, this is not evidence-based. This is what I've witnessed. The few people that might be involved in an unpaid volunteer capacity, maybe one or two people in a dementia-friendly community initiative might go to the monthly meetings. They might do a walk around a building and say it's not dementia accessible. They feel like they're being included, but they're not really willing to because they've accepted the prescribed disengagement. Everyone accepts it. If you are a regular patient and your doctor and the nurses, and then the major charity that supposedly supports people from that. Health sector all tell you there's nothing you can do. You need to give up everything you need to get your end of life affairs in order people believe them. I believed them to start with, and yes, I was a nurse, but I wasn't a doctor. I didn't diagnose people and I had a a 20th century view of dementia. But how can someone go from diagnosis to end stage overnight? It's illogical, but there's not much logic out there. But you know, back to Dementia Reliance International, we really wanted to have a global voice, and I think the grass always looks greener on the other side. And I suppose I thought that things were better for people in other countries. And people from other countries thought things were better here in Australia. And what we found out when we all started meeting regularly and we were probably like Zoom calls us the early adopters'cause we don't have any money and you know, a couple of us funded, setting up the organization, we discovered that it was terrible in every country. So people in Scotland saying, oh you are so lucky in Australia. And I go, no, we are not. And I go, but you are so lucky in Scotland or America or wherever. You know, at one point we had members in over 40 countries, but for different reasons, we are all missing out on services and support. Mm. Why is that? What's happening to all the money? Where's the money going? Because it's not going to us. And how do you think we can better support people? Like you're talking from one aspect, obviously from a institution and a government funding, but you know, it seems to be. That as you alluded to it, well actually didn't allude but actually said that it needs to be a cultural change or a societal change that happens in relation to it. So what can the everyday person do to support someone who is diagnosed with dementia? Tell 'em to get back to living and to demand disability support to do that. And if a charity wants 'em to go and become a self dementia advocate, this is my fee. So nobody asked me to work for free before dementia. Never. If I was asked to be involved in a external project from my regular working life, they'd be either give us a quote or this is what we pay you. Dementia land. My God, Catherine, I've had people from all over the world contact me through my website or however, asking me to be a consultant for their new business, setting up a new business on dementia. They wanna make sure it's supporting people dementia, and they go, well, yeah, in the early days, I would've done it for free. I would never have even questioned because you start to think you are not deserving of the same payment that you were before. Why is that? Anyway? I, I still do some things for no fee, but I'm very selective now, and when I started asking for either a, like a commercial rape fee, a $30 voucher, if you were talking to people in the disability community more broadly, they won't accept vouchers. That's just an insult. How is a $30 voucher? Adequate for say, 10 hours work. That's just not okay. So Kate, can you tell me a little bit about the work that where you have seen a bit of success and you have, you mentioned that you've seen some change with rehabilitation. Can you talk me through what your involvement in that has been? When I went to the World Health Organization in 2015 as an invited keynote speaker, and I was representing Dementia Alliance International, as I think I was a co-chair at that time, and the first day of that two day conference was very much focused on the stats. You know, I think at that time there was 47 and a half million people was what the global data was, and they announced that there was one diagnosis every 3.2 seconds, and then they spent the whole day. Focused on research for a cure, a drug cure. And by the end of the day I was getting more and more annoyed going, what the hell? They've just told us at the beginning of this conference, there's 47 and a half million people living with dementia around the world. A new diagnosis every 3.2 seconds, almost 10 million new diagnoses a year. And all they want to talk about is research for a cure. When they were so far away from that back then, they're still a long way away from research for a cure. So I changed my presentation, which shocked everybody 'cause I was, you know, have to have your presentations pre-approved, only if you're a person with dementia. By the way, nobody else had to have their presentation approved and even now it, they wouldn't do it to me now. But people with dementia, oh, you know, we'll help you write the speech. So it's contrived. A lot of the stories are very contrived and controlled. But anyway, so I changed my two o'clock in the morning. I was laying awake, annoyed about the fact that the only focus was on drugs. So I changed my speech and I had three calls to action. And one was that, you know, there was more than the research for a cure was balanced out by research for care, and that dementia, we should have the same access to the disability discrimination acts and the CRPD as any other disabled person. So the WHO have listed dementia, as they used to call it the leading cause of disability for almost 15 years, and now it's on their website as a major cause of disability and dependence globally. So if that's on the World Health Organization website and has been for well over a decade, why aren't researchers embracing that and going, alright, let's change the post diagnostic pathway to include disability assessment and support. And I mean that beyond activities of daily living, like making a cup of tea. Mm-hmm. Anyway, in 2015, I was told by people at the WHO that they would never support. Interventions for rehabilitation for people with dementia. And then they launched their technical interventions for dementia rehabilitation in the last three or four years. And I've been working as one of the chief investigators for a research project at Monash University. Our project finishes at the end of June this year, and we have developed an emo rehabilitation for people with dementia, for healthcare professionals. And then that will be developed also for the general community. So that's a start. The next step, of course, is to get people to engage with it and for funding to change. So, so for me, in terms of speech therapy, because I've got a form of aphasia, I should have been referred to a speech therapist straight after my diagnosis. And if I'd had a stroke and had aphasia, of course I would've been. Sent to a speech therapist, but the only funding for speech therapists for people with dementia is when you're nearly dead and you're having trouble swallowing. Well, it's a bit late really, isn't it? I like to keep talking. So, you know, I kind of fluke it. I have a, I have a, still have a neighbor who was a speech therapist and, and in the early days my language was much more stilted and, you know, the disability aspect of it was very evident. And she said, well, so who did you get referred to as a speech therapist? I said, I didn't know I needed one. She said, listen to yourself. Of course you need one. If you wait too long, it'll be too late. But there's no funding, so if you can't self-fund that, you're screwed, basically. So that's where we're at. You know, everything I've done for myself until getting an NDI qualifying for NDIS package, now I get some support. Everything was 'cause I, number one, I thought of it. Number two, I found a neuro physiotherapist who supported me with a rehab program. And number three, because I could afford it. But if you couldn't afford it and your doctors and the nurses and the charities don't tell you to go and get these disability services, then people don't even like, people don't know what they don't know. So if you tell 'em it's the end, that's what they believe. And if it's the end, you give up. Yeah. And you are, you are someone that had a high level of health literacy. Oh, yeah. Yeah. I, I did. And I, you know, I had a reasonably healthy iq, so I've got good cognitive reserve, but if you don't have any health literacy and the doctor doesn't refer you and the people around you in that sector. Whether it's the charities, whether it's healthcare professionals working in the field, they don't say to you, you should be having rehabilitation. You should be changing your lifestyle. Stop smoking, stop drinking, stop whatever, whatever your lifestyle challenges are. You know if, if you are at risk of diabetes or at risk of heart disease for quite a long time, decades, doctors have been, it doesn't mean patients do it, but doctors advise people to lose weight, stop smoking, reduce drinking, and other drugs, whatever, dementia, nothing. No advice. And now the risk reduction evidence is proving to be useful for slowing the progression of dementia. So why wouldn't you take a healthy lifestyle approach and try and make it a, even if it just makes you feel better, being fitter. Isn't that better? Isn't that higher quality of life? And it's, it's interesting because it's sort of, you will only rise to the, the sort of level that is around you. Mm-hmm. And what the expectation is. So if you are getting a diagnosis and you are being told to get your end of life affairs in order Yeah. And you are, you're no longer given your agency to make decisions in your health and certainly your professional life. It's not looking great for the prognosis or the outcome is it? Exactly. You know, if you were diagnosed with an untreatable cancer, the doctors and the people around you, the healthcare professionals around you wouldn't only tell you to get your end of life affairs in order. They would still give you all sorts of other ways to improve your wellbeing and to fight for your life. Try your holistic, you know, I've had lots of people with. Inoperable cancers or untreatable conditions, they're not told to give up. So, you know, there's just such a disconnect around dementia and a lack of education, not only of the general public, but of healthcare professionals. And so this sounds like this e module that you're working on with Monash University is really going to be quite a bit of a game changer because it obviously, it has a two-prong effect and I'm, I'm not sure whether you can talk about it, Kate, but I'd be very fascinated to know how it's different in its approach, if you can talk about it. Well, the approach is, you know, I think it's a nine week e-course and it's, I can't say where, but it will end up on a platform where it'll be maintained and people can access it and do it for free. Like you can do the MOOC at Tasmania, uni Tasmania Wicking Institute has the understanding dementia. A massive online open course is what MOOC stands for. They've got the traumatic brain injury course, they've now got a Parkinson's disease course. They've got a risk reduction for dementia course. So it'll, it'll become a course like that that anybody can sign up and do healthcare professionals and beyond actually. That's great. And you know, it starts out with the, the human rights aspect of why people with dementia should be provided with rehabilitation, if that's what they want. You know, I've had patients who had quite severe strokes. They're not interested in any rehab. No. I can't be bothered. You know, and I, I remember presenting years ago for, it might have been Domiciliary Care or Royal District Nursing Service, someone like that, you know, a services provider. And they asked me to come and talk to all of their team staff, large event on. The strategies I was using to live a better life with dementia. And I did that and it was great. And afterwards, after the afternoon tea or morning tea, a very well-meaning nurse came up, she said, okay, can I have a little talk to you? I really need to talk to you about something I didn't know if a bar of soap. And I said, oh yeah, sure. When I'm nearly ready to go, we'll go and have a chat over there. So when, when we got to have a chat, she sat me down. She was holding my hand and really worried about me. She said, you do know that doesn't matter what you do, dementia will get you in the end. And I said, we, I do know that. And I'm a bit of a death groupie. I chose my plot for being buried in when I was 17 and I had my will and all of that End of life fairs business done by the time I was 20. I'm pretty sure you are gonna die too. But does that mean I wouldn't wanna live my best life now? Yeah, she was so distressed that I was like being Pollyanna in this whole other approach to dementia. Well, that's common all around the world. And you know, if you do well with cancer and or you go into remission from cancer, everyone applauds you. Great job. If you live well with dementia, you're accused often defamed publicly of faking it. That's kind of not okay. Even doctors will make diagnoses over Twitter from having read someone's book or listen to a five minute presentation by a person with dementia. So there's quite. There's this group of people, healthcare professionals, and the community stuck in this old fashioned, there's nothing you can do to have a better life with dementia. And there is, there are hundreds of people like me around the world now who've said, no, I'm not going home and waiting to die. Stuff it. I'm gonna get back to living. Whatever you've got wrong with you, if you've got a disease, get back to living. It's not something that you hear people say, but yet, you know, the thing is, is that we all. Go out the same way regardless, you know? So it does come as a surprise to me that you are not given like any other diagnosis or any other, you know, any other diagnosis you're given. You are told what your rights are or what your options are and you can make that decision because you know what it is. So it's entirely up to that person whether they go down that path or not. Like you said, there was other people that choose not to when they have heart conditions and those sorts of things. So what is it that you think that, is it having more open conversations such as these that we should be having? Or what is it, what is it that we can do? Kate, do you know? I, I, I dunno how to answer that, Catherine, because I used to think it was having more conversations, sharing more of these stories and there whilst they are still important. And you know, you've probably learned stuff today about living differently with dementia that you didn't know before, but you will share that amongst your personal and professional networks probably. And it, you know, it's changed, potentially change the way you think about dementia. But until we have the people diagnosing and the medical professionals and healthcare professionals who support people with dementia support in inverted commas, 'cause it's actually not very good support. And until we have the charities treating us like people with disabilities, paying us, employing us, including us, not tokenistic inclusion, and whilst those sectors, it's still about us, without us, whilst those sectors are still basically campaigning, advocating for us to give up living. They may not think they're still saying that, but they are, you know, a four or six week course on living positively with dementia. That still mostly talks about getting a end of life affairs in order and doesn't suggest any referrals to rehab or any referrals to loss and grief counseling. So if I was a carer, I can get free loss and grief counseling through quite a few channels, but they don't provide that for me for someone living with dementia. So I have to pay for that separately. And let me tell you, losing capacity, losing function, there's a significant amount of grief attached to that. And you know, you get diagnosed with dementia, you get no support to live with it, you get no counseling. For the grief and loss aspect of it. You might get counseling for the changes ahead. If someone lost their husband and they don't have any support or any grief counseling and then they end up apathetic and depressed, do we automatically think they need to be locked away and medicated? Maybe we go, oh my God, you are grieving. Let's get you some support. And Covid proved that there's a term in dementia care called the Behavioral and psychological Symptoms of Dementia, and it was a term commonly known as BPSD. And I've been an activist against BPSD for a long time now, and I was a very lonely single person around the whole world, practically, who was campaigning against it. And now there's a large growing group of professionals and researchers who are on the same page as me in a way, but. Covid proof that BPSD doesn't really exist because when Covid came along and the whole world had to be locked at home, isolated, no support, no social life, couldn't go out and exercise, people started exhibiting depression, apathy, anger, trying to escape from hotels or houses. If you try to escape from the dementia jail, and it's not a secure unit, it's a segregated jail, you are drugged more 'cause that's not okay if you've got dementia. So the parallel between dementia symptoms, which is actually mostly normal human responses to a really difficult diagnosis and really difficult lack of care and support. Hard to live with, not being supported to live. Whereas people with covid, you know, in Australia, the government took it from 10 mental health sessions with a psychologist that you could have 20 people were offered support, all sorts of support for people exhibiting symptoms of covid, neuropsychiatric symptoms of covid. Nobody labeled them that. But these normal human responses to dementia or really lousy dementia care and the violation of our rights has been pathologized by psychiatrists. And the Johnson and Johnson funded the BPSD guidelines and our normal human responses have been pathologized and we are medicated and locked away. Now that's not okay. So I campaign for all residential care facilities to be shut down and for segregated institutional living to be stopped. Because you know, if you look at the CRPD and people with disability. The right to deinstitutionalization. There's a massive campaign of the disability movement. We need to jump on board with that campaign. And so there was just CRPD? Yeah. Convention on the rights of persons with disabilities. Yeah. Right. And can you talk to me a little bit more about what that is and what that involves, Kate? Because as I mentioned, I'm, I'm unfamiliar with what happens when people are diagnosed and they get to a point where you say that they're segregated. Can you talk me through the challenges and what that involves and how that infringes on human rights? Well, if you need to go onto a nursing home with dementia, you know, if you've got no way of being supported at home currently, no way to be supported, to continue living at home. And there's no, almost no alternatives to institutional settings. There's a couple now in Australia, but mostly there's no alternatives. So our right to equal access to health has been denied because we're not being offered rehab, we're not being offered, you know, rehab, things like speech therapy, et cetera. Mostly we're not offered any of that. So we don't have the same access to healthcare that we would have with a different disease. We don't have access to equal recognition for the law. Many of our legal rights are taken away because we've got cognitive impairment. We don't have freedom from torture or cruel, inhumane, or degrading treatment or punishment. People who need. Institutional care are locked and segregated in dementia units. So look, NASA stopped segregating black people and white people in the 1950s. Why are we still segregating people? Just because they've got a disease. The only other people who are locked away and segregated in our community are convicted criminals. So why are we segregating and locking people with dementia into secure wards? It is cruel. And then the, you know, the Royal Commission has proven the amount of cruel, inhuman, degrading treatment and lack of care that people would get. People with dementia who've become advocates are exploited. We don't have the same support to maintain living independently, which is Article 19. It's A-C-R-P-D. The list goes on. That's like 10 podcasts on its own. So we, we just aren't treated in the same way as people with other conditions and people with other disabilities. So it seems that, you know, people, if they are diagnosed, they need to be asking questions. Yeah. But you don't know the questions to ask. That's the problem. That's, that's so true. You don't, I didn't know the questions to ask. I didn't know that if I needed to go into a care home in a comm, there's not much care in those homes. We know that from 20 formal inquiries and a royal commission, we know that for a lot of those places, the care is totally substandard. The food is substandard. You know, my father-in-law lost 15 kilos in four weeks when he first went into care. Now, that's not care. That's starvation. And people get who work in these places get really defensive about it. But that's the fact. We know that from the findings of the Royal Commission, you know, their interim report was titled Neglect. So a lot of people living in residential settings are neglected. Their staff, their badly treated, you know, the families who've put hidden cameras in rooms, there's footage of people being, you know, pillows, smothering them. There's so much stuff happening, but there's not too many jail sentences for those perpetrators. No accountability for age care providers. And I'm not sure the New Age Care Act is gonna fix any of that because we need to change. Much more than just the system. We need to change policies, we need to change attitudes, we need to stop the paternalism and the therapeutic nihilism that is still really evident. And, you know, harming people with dementia. So, you know, we don't lock kids away who've got cerebral palsy in institutions anymore. We once did in some classrooms. There's still issues around that, so Yeah, I know there are. Yeah, yeah, yeah. Which is terrible. It really is. And can I ask Kate, 'cause obviously one thing that that comes to my mind is what they deem legally as capacity. You know, in the legal terms of, of like you mentioned earlier that, you know, you had a will when you were in your twenties. You, you'd already picked your plot when you were earlier than that. I think it was 17, you know, so you are extremely organized, you know, unusual. Yeah, unusual. But what happened when you were diagnosed? Were you deemed as still having capacity because you had a diagnosis or, yeah, I, I still am deemed as having capacity. I think I, you know, don't quote me on this, but I think that by law you have to be deemed to not have legal capacity by your doctor. So, you know, the family member can't just say, oh, mom or dad's got dementia. They've no longer got capacity, and I'm making all the financial decisions and all the lifestyle decisions. You can't just, even though that does happen sometimes, how's the person with changing capacity gonna fight that, you know, if you, if the daughter and son or the daughters. Say, mom or dad need to be in this nursing home. And they, they're wandering all the time, so we better lock them away. Everyone thinks that's okay for a person with dementia, but it's not okay for anybody else. So we don't, you know, the world's gone mad. It's this excitement about dementia villages, these contrived villages where only people with dementia live in them and they've got fake bus stops and all this other thing. Uh, we don't have villages for people with schizophrenia or villages for people with cancer, or villages for people with bipolar or villages for people with motor neuro. Why is, does the world seem to think it's okay? It's just a new form of segregating. Mm. But the money being tipped into villages, dementia villages now is scary. It is interesting 'cause you like just from, from and, you know, and, and I'm not educated at all, but it does make me think of when we used to have institutions such as Q cottages here in Melbourne. Mm-hmm. Uh, where everyone was put, if they had any, any type of diagnosis affecting their capacity. Now we know, we've known for years that that is not. The way to go and we, it's not okay, see a Q cottage, you know, be built in, in a very long time. Yeah. Um, so it, it is interesting that that is perhaps a school of thought around this. So do you think we can support someone who has been diagnosed, you know, from someone who has actually gone through the process? How would you suggest someone can support someone who has just been given that diagnosis? Well, I think the best support you can give a person is to stay in their life. So if they've been told by the doctor to give up, to get ready to die, to get ready for aged care, if all the healthcare professionals around them support that narrative and most still do, and if the Dementia charities still support your better get your end of life affairs in order. It's very hard to convince an individual. That it can be different. And you know, the first couple of years of any trauma situation and a terminal diagnosis is pretty traumatic, whether it's dementia, and dementia is a terminal illness, but so is living. So if there's no support for the terminal aspect of this diagnosis that's been thrown into your lap and all you are told is you've gotta give up everything, pretty much people do it. That's what they do because they don't know any differently and nobody around them is saying it doesn't have to be like that. But if they got support for the grief of losing capacity and then they got disability support to manage the symptoms of dementia, they'd probably just keep living. So, you know, that's changing everything that's changing. Government policy research, it's changing everything. You know, I can't do that. One person can't do that. And, and I moved away from pure activism into research hoping that my PhD might shine some light on why we need to see dementia as a disability, not just see it, but support people as people with disabilities. You know, if I had a road accident and lost my legs and my job was, I don't know, stopping shells at the supermarket where you need your legs for that, would I be told to go home and wait to die? Or would I be fitted with prosthetics or a wheelchair and given rehab and emotional support to get back to living? And would my employer. Have either provided me with a different job that I could do without two legs or put in some disability support to allow me to keep doing that job. By law, that's what they have to do. Mm-hmm. But with dementia, we l younger people, they lose their jobs. And that's the thing that really struck a chord with me is that it brought me back to when I had my car accident and I think of the support that I was given at that time, and the rehabilitation and the psychological support and counseling I was given. I was grieving the loss of what my life was or at that stage, and, and I was grieving that loss. And it really does surprise me that this isn't thought in the same manner as a disability that can be supported and managed. Mm. Because when you talk about it, Kate, it makes perfect sense. Mm. To me anyway. It does to me for sure, and it does to lots of others, but it, it's a large space to change and there's more than just doctors or other healthcare professionals or charities or policies like they all have to change. Like any change is really difficult and there are academics particularly who've really pushed back against some of my thinking. And sure, some of my thinking hasn't been evidence-based research. It's been based on anecdotal evidence and what I've witnessed and what I've personally experienced. But I can remember walking into a a one day conference seminar in Queensland quite a few years ago now, and I used to be a very regular blogger. I used to write almost daily blog on my website, and I've been campaigning against BPSD for a long time, and often just on my website. I walked into this thing in Queensland, I'd flown in probably that morning, got there and this academic who's high up in the BPSD field, and basically her whole career has been focused on that, pretty much yelled at me. Who did? I think I was saying that BPS, you know, questioning BPSD, I've done 30 years of research on this topic. People take it as a personal attack instead of going, wow, that's another way of thinking about it. Let's explore that. And now that I am a researcher, I wanna explore that as a researcher. I'm not just gonna say that person's wrong 'cause it doesn't fit my thinking or my past research. You know, Stephen Hawking found his own research to be wrong and he was quite happy to admit that. But if someone's got a profile and done 30 or 40 years. And got recognized in a particular field and someone comes along and says That's wrong. They take it personally. So if you've, your legacy as a researcher has been a legacy promoting BPSD or some drug or some, I don't know, validation theory or something, and then someone, some one person comes along and questions it. It's hard not to take it personally. And so people push back pretty hard actually. And then when you are just the person with dementia, and I say that because I've been told so many times by professionals, I've be sitting in a consultation, I'll stand up to question something or to suggest something. And I've had a professor stand up and yell at me against rehabilitation for people with dementia. So I was on the steering committee to develop the first national dementia. Guidelines, clinical guidelines in Australia. It's quite a few years ago now, and it was in our last two day forum in Sydney and we all had these round tables and I was given the opportunity to pitch for why we should have rehabilitation. And this professor stands up and absolutely yelled at me from across the room. And we are not having rehabilitation in these guidelines apart from, you know, a bit of stuff to help people make a cup of tea, the support for activities of daily living. And then he said, and what would you know anyway, you are just a person with dementia. And he picked his stuff up the table, the chair went flying behind him and he stormed out the room and didn't come back. Now that's a true story, and I could give you hundreds of stories like that that have happened to me or who that has happened to. Friends of mine with dementia. So the lack of respect for another viewpoint is high. And then three years later when rehab dementia was becoming fashionable, I paid for my ticket to go and listen to this guy who yelled at me and said, we were never having it do a presentation on rehabilitation. I sat right in the front row and looked him in the eye. So that's the kind of shit that people with dementia have to put up with. If you dare to speak up, it's pretty wild. It is wild, but it's also, that doesn't surprise me too much because I think that you know, of late, certainly here in Victoria, there has been a few national papers and news organizations that have actually been shining the spotlight on medical misogyny and the fact that you also have the added disadvantage of not only having dementia, but also I'm a woman, being a woman. Mm-hmm. So, well, and, and I cop, so I got three challenges. Dementia, female and ageism. So from diagnosis, I'm now treated the ageism towards me, even though I'm younger. I'm not younger now, but I was, so, I cop ageism as well. Yeah. And, and that's a, you know, the reason why I really wanted to have you on the show, Kate, is because you challenge the status quo of what people's perceptions are. And I, when you talk for me, it just seems to be common sense. And what I like about it is that seems to me your, your way of thinking and the way in which you speak, it encourages people to ask questions in their situation. And if they find themselves in a situation like that, or supporting someone who has been diagnosed with dementia, it's to actually ask questions about how you can live better. How, how can we support you to keep living your life? Yeah. What do you still want to do? You know, my beautiful late aunt who I was really close to, she died, I don't know, maybe five years ago now, lived at a, a regional town called Port Lincoln in South Australia, and she had very early, you know, mild Alzheimer's from about the age of 90 or 91. She was diagnosed with it, and at that point she could still drive. We should call her aunt and center. And the minute she got a aged care package to support her'cause now she's got dementia. All that the care staff wanted to do was force her to have a shower. She could still shower herself, in fact, she could still do some gardening. What she wanted, 'cause she did get to the point she couldn't drive. What she wanted was for the carer, the paid carer, to take her down to her local church. Stay with her, help her set up her painting equipment.'cause she used to teach painting. She'd been teaching painting at the local church four years, took me six months and three flights and back to Port Lincoln for the organization to agree to do that for her. So this person-centered care is just a tick box. Poor Tom Kit, the late Tom Kit Wood, he'd be horrified to see that almost nobody yet provides person-centered care. So why should you have to campaign and advocate for someone to make that sort of choice about their life? Oh, she's got dementia. Shouldn't know what she wants. Now, one of the staff said to me, I said, yes, she does. She absolutely knows what she wants and she doesn't want some stranger coming into her home and making her take her clothes off in front of them. You know, how many people do I know that would be happy for a stranger to come in and force 'em to have a shower? Would you like that? I wouldn't like that. And generally at a time that is nonsensical too. Yes. Yes. And she was like me, she was a really early bird. She would wanna have her shower at six o'clock in the morning, not 10 30 when they turned up. And, you know, the whole system to me doesn't make sense. And you know, I, I often say that healthcare professionals should have to have the disease before they can look after those people. And of course, that's totally illogical and unacceptable and stupid really. But until you've had a baby, you don't know what it's like to have a baby. So if you are a young midwife, 23 years old, never had a baby, and you are telling a woman who's on her fourth baby what to do and what not to do, kind of doesn't make sense, does it? But the system says, listen to the midwife. Yeah. Yeah. So we're all about systems and it's about power and who's got more knowledge than you, but Experience council, lots of knowledge. It does, and I can only hope that, as you said, that there is some organizations and some state governments that are actually, and I, I haven't interviewed, but I've, I've certainly spoken with Lived Experience Australia. And the fact that there are organizations that are actually recognizing the value of lived experience and making sure that there's roles where those people are renumerated for their experience and can share how the systems and the processes can be improved and become more people centered. You know, and there's a little bit of movement, you know? Yeah. I mean, I have been, I suppose, ranting about the real inclusion or the lack of real inclusion of people with dementia for quite a long time. And I, I did a presentation. Oh, six o'clock in the morning recently to the Nevada Dementia Friendly Community Organization. And they got all this amazing funding and they wanted me to talk about other things in my research and, and I talked about my dislike of dementia friendly community. And of course the ears pricked up. They were very interested in it. And I said to, with all this money, how many people with dementia are working for you? Oh, oh, none. Said, well, there's your problem. It's not really inclusion. It's a couple of people with dementia there as advisors. They attend the meetings, they're having a good time at the meetings. But what about the other, I don't know how many people in Nevada have got dementia, but what about the other 60,000 people who aren't being included in anything? So the few advocates that are busy as advocates for dementia charities or a university or a a group. They won't complain about it 'cause they love having something to do. So think about this, your life's taken away. You've prescribed disengagement, you lose your job. Or if you are like my auntie or volunteer you, you're not allowed to do that anymore unless you fight hard for it. You mostly lose lots of your family and friends. They disappear. You know, if you get cancer or some other horrid illness, people around you promise to be there till your last breath. If you get dementia, 90% of them disappear mostly quietly. You just never see them again. They don't invite you to anything anymore. And that's not intentional, not meant to hurt you. People dunno what to say. They dunno what to do. They've got this last century attitude and impression of what they think dementia is and it's too hard for them. So they just disappear. So you've had that experience, you've lost everything. And then a charity says, oh, well we'd love you to come and. Review some documentation or we'll fly you up to Canberra to tell your story at Parliament House, friends of dementia, parliament, house some, well, all of a sudden you've got your life back. Even in those, not the life you used to have. You're being flown around. You're being taken out for meals, you've got lovely hotel accommodation. Who wouldn't wanna keep doing that? And who cares if you're not being paid? In the early days, I was like that, but it's, it took some time for me to reflect on all this time and effort I was putting in for no return. And I don't mean no personal return because there is some value. I've been a volunteer since I was a little kid. I love volunteering. So I thought it was just, you know, a new way of volunteering. But then you read another world out someone's report or another research paper or listen to someone on a podcast and you hear that people with dementia are still being harmed, neglected, told to give up everything. So there's no change. Stigma's the same as it was 40 years ago. Attitudes towards people with dementia haven't changed in the last five years. For all the money that's being spent on these awareness campaigns, it's got worse, not better. So that's because it's still about us. Without us, has to be. And you know, I didn't think the, the world's taken on dementia-friendly community initiatives. And they're not giving it up because for organizations there's so much money in it and governments have de invested in health and social care and they've put money into dementia friendly community initiatives globally. And it's got worse for us. Not better. How is that? Okay. But nobody else is speaking up about it. So it's pretty wild. It is wild. Kate and I can't thank you enough for sharing your story with us today. I love the fact that you aren't an advocate. The fact that you are actually an activist is what we need in this world. And I really thank you for, for being that. Thank you Catherine. Now, Kate, tell me how can end of life planning be more accessible and empowering for someone who's been diagnosed with dementia? I think that the question, we could reframe it for everybody because I've spent a lot of time with families of somebody, a patient who's dying or fam, people in my own family who are sick and facing death, and nobody seems to be empowered to wanna do that stuff. It's not just people with dementia. We do it because that's actually pretty much the only advice we get. Quick, hurry up, get your end of life affairs in order. And most of us, if you haven't done it like I had, most people do get that done. But I think that we should be teaching all this end of life stuff to our kids at school. So they learn to drive when they're 16, so they're gonna be out on the road maybe killing somebody or going through an accident themselves. They get taught to vote. Why aren't we teaching them that one of these days their life is gonna end. Let's have these conversations before people get sick. Because once you are sick, your focus is on, on the stress of being sick. And so if we can get those conversations starting much, much, much earlier, I think it would be a way of empowering people just to embrace the fact that one of these days you're gonna die. Like my kids have done some of their end of life stuff, and that was only because when I updated my will and enduring power attorney and all those things. After my diagnosis.'cause you know, I'd done it a long time before and the lawyer said to me, so you know, you said you've got two sons. How old are they? Are they over 18? And I said, well, yeah they are, but surely they don't need that doing yet. And he said, well, they're driving, aren't they? They're on the road and they're probably drinking occasionally being idiots 'cause they're boys. What if they have a major brain injury and they're end up on life support? I said, but yeah, surely the doctors at the hospital would talk to me, well, you're no longer the guardian. They're over 18. And yes, mostly medical people and hospital staff would include a family member if that happened. But there might be a time where they don't, there might be a particular doctor who says, no, you are not the legal guardian. So because of that, we had long conversation with our kids and we did that with them. They didn't have enough assets and stuff to worry about a will at that stage. But at least they knew. So one son did not want any life support stuff. Don't keep me alive. If, if it's a ventilator, forget it. Do not resuscitate. And the other one said, do everything. If they'd waited until they were 60 and got a diagnosis of cancer or something else, they might have found that way too hard because it's too close. Whereas at that point, it wasn't close. So these are conversations we need to have really early, you know, when my, my father was dying and I said to him, dad, you need to get all this. No, no, no. You are the nurse in the family. You'll be able to make the decisions. But there's four siblings in my family. Nobody agrees on what should happen in the end. I just stayed away from her. Because there's no point arguing. And if you, if you haven't told somebody what your wishes are, then how can you expect your family or your wife or husband to know that stuff? So I think having those conversations really early reduces the need to empower people to do it when they're sick.'cause already done. Look, Kate, you're not gonna get any disagreement from me whatsoever. The listeners will know. Listeners will know that I'm a big advocate. You know, you talked about a midwife and, and having children previously, and that's what I think is just hilarious. We don't all have children, but we're all going to die, yet we don't actually get the extensive education I you have to go through when you, which is stupid when you're pregnant. Like, you know, like we went to, you know, midwife classes and I can't even remember how you'd, what you'd refer them as, but, you know, the, the prenatal classes. Classes, I think something like that. Yeah. You know, and it was weeks that you had to attend the two of you as a couple, you know, and not everyone has children and wants children, but yet, you know, we provide education in that. But yet the one thing that we'll all have to experience, and we don't cover it in school. You know. No, I know. And we should, there's a whole lot more, a lot of life skill stuff that gets missed at school. Healthy relationships. You know, you, you pretty much, everyone's gonna couple up. Yeah. Whether it's a guy and a girl, or whether it's two guys or two girls. It's irrelevant. Nearly everyone, yeah. Has a relationship. There's no training or education about healthy relationships, healthy conflict. There's none of that. There's not enough information about managing your money. There's no information about death and dying at all. And yet it's the one thing we all know is gonna happen. I got asked in a q and a session once, and it had been about, you know, talking about dementia and end of life stuff. And the first question in the q and a session, which came from a minister of Christian religion, she said to me, it's okay. My question is how does it feel for you knowing that you're gonna die? And I was slightly taken aback because most religious clerics have done funerals and christenings and they know about death. Yeah. And so I, I sort of thought before I responded, I didn't wanna do a knee jerk response. So I said, well that's a really interesting question. So I'm gonna answer the question with a question. I said, how does it feel for you knowing you are gonna die? And then I said, the one guarantee I have is that the 600 people in this room today. We are all gonna die. So just 'cause I've got a diagnosis of dementia doesn't mean you guys aren't gonna die. I kind of put it right back on them, I feel is the weirdest question ever to be asked. What's it feel like knowing you're gonna die, but maybe everyone thinks they're immortal. I don't know. Until, until you get sick and then people start thinking about it. It's crazy, isn't it? Yeah. Yeah. And especially given who it came from. Like, well, and we shouldn't judge people, I suppose, you know, maybe nobody thinks about dying until they get sick. Almost nobody, I think, think about dying until they go, oh Jesus, this might kill me. I better think about dying. And it forces you to like, you've got no choice then. But you know, trying to deal with your end of life documentation when you've got a difficult diagnosis, when you're grieving about. A life that might be lost. Your life or a life that might be changed. It's pretty hard to do all that practical stuff. Yeah, it really is. Yeah, it is. So it's, but look, Kate, I can't thank you enough for today. It's just been so lovely to reconnect with you and, and have a chat. It's been brilliant. Yeah, my pleasure. Really lovely to, to reconnect as well. Catherine, thank you so much for inviting me. I'd love to come back in a couple of years and tell you about my PhD too. That will be really good. I look forward to our next chat. Yeah. Terrific. Thanks Catherine. Thanks, Kate. We hope you enjoyed today's episode of Don't Be Caught Dead, brought to you by Critical Info. If you liked the episode, learn something new, or were touched by a story you heard, we'd love for you to let us know. 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