Kate Swaffer, MSc, BPsych, BA, Retired Nurse
Chair, CEO & co-founder, Dementia Alliance International
Kate Swaffer is a humanitarian and an award-winning campaigner for the rights of people with dementia and older persons globally. She has a Master of Science in Dementia Care, a Bachelor of Psychology, a BA, a graduate Diploma in grief counselling, and is a retired chef, and a retired nurse.
Swaffer has played a key role in campaigning for the human and legal rights for people with dementia including equal access to the CRPD. She has been tireless in her work on reframing dementia as a disability, for rehabilitation for dementia, and is the first person in the world with dementia, diagnosed herself at the age of 49, to be a keynote speaker at the WHO.
Swaffer has won many national and international awards for her work including 2017 Australian Of The Year in South Australia, and the 2018 Global Leader, top 100 Women Of Influence in Australia. She has contributed to key policy documents including work for the Australian Aged Care Quality Agency, the World Health Organisation (WHO) Quality Rights initiative, the International Consortium for Health Outcomes Measurement (ICHOM) and is an Ambassador for StepUp for Dementia Research in Australia.
Swaffer has two honorary university positions, has been very active as a researcher, and is a highly published author and poet. Her uncompleted doctoral work, and other research projects includes Dementia as a Disability, Disability Rights, Human and Legal Rights, Stigma, Quality of Life, and the Public Discourse of Dementia. She has published two books, What the hell happened to my brain? Living beyond dementia (2016) and Diagnosed with Alzheimer’s or Another Dementia (2016), two poetry books, and countless journal articles, media appearances, interviews, publications, and blogs.
Topics of discussion:
- What was it like being diagnosed with dementia at the age of 49?
- What do you wish you knew then, that you know now?
- Why have you been campaigning for dementia as a disability, and for human rights all people with dementia for over a decade?
- Tell us about the stigma and discrimination you have experienced since diagnosis.
- Have there been any gifts having dementia?
Kate’s LinkedIn: https://www.linkedin.com/in/kate-swaffer-502a5b13/
We’ve had a number of guests on the show who have openly discussed about their dementia diagnosis. So I am so grateful to provide a space where people feel comfortable talking candidly about their own experiences with dementia. So Kate Swaffer is the CEO and co-founder of Dementia Alliance International (DAI) and was diagnosed with dementia at the age of 49. So Kate, thank you so much for being here with me today in Boomer Living to discuss how dementia has touched your life and the work that you’re doing.
Thank you, Hanh. It’s lovely to be here as well.
Great. So can we start by having you share the story of how you were diagnosed with dementia?
I was diagnosed with dementia. I didn’t go to a doctor expecting to have dementia. I, ironically, I had worked as a nurse in my career first career and worked in Adelaide’s first dedicated dementia unit. I have supported three family members, close friends who’ve died from dementia. And in 2005, I had to have brain surgery for a malformation that I’d been born with, but hadn’t been diagnosed until midlife. And it was a year or so after that, that I noticed cognitive changes and I made an assumption. I worked in operating theaters for 20 plus years, and I made an assumption that the changes would you to fix the brain surgery. So a couple of years later after having had multiple testing and retesting for what initially I didn’t even twig was for dementia. I was diagnosed with re young onset dementia and I didn’t really like the diagnosis so I got a second opinion from a professor of neurology in Melbourne. I went into state for that. And although I haven’t progressed as predicted initially. I’ve certainly been retested every year or two. And the same diagnosis keeps coming back. So it’s a strange thing with dementia. It’s probably the same with other critical illness is that, if you’re getting tested, you always hope that they were wrong, last time that’s gone away or it’s something else.
So what was it like for you emotionally to be diagnosed with dementia at the age of 49?
It was a bit like a bolt out of the, a bolt of lightning really. I, even as a healthcare professional, even though I wasn’t working as one at the time, I didn’t understand or know that younger people got dementia. I had only nursed older people with quite advanced dementia. And I guess, and society and even healthcare professionals still seem to make an assumption that from the day of diagnosis, you’re going to go to late stage dementia really quickly. And there’s very few types of dementia where that is the case. There are many people who’ve had dementia for 20, even 30 years, and still living, although life changes for them they’re still living, positive, productive lives. So I think that there’s a, you know, a myth out there that from diagnosis you’d go to late stage really quickly, but you can’t, won’t be able to communicate that you won’t remember anything. But initially I was in pretty deep shock. I cried, fairly constantly for weeks. I headed to, and I wasn’t so prolific back then, but in fact, Dr. Google and found some excerpts of writings from the late Dr. Richard Taylor, who is a co-founder of Dementia Alliance International. And I was like reading my own story and he turned to using journaling and writing as a form of therapy for himself and ultimately, uh, published a book, 80 of his first essays. And so I started to write and I was still at university as a material student and I started to see that life wasn’t going to be as grim as predicted. Even though all of the advice around me from everyone, and it wasn’t my doctor who did this, it was everybody else, Alzheimers Association Staff, other healthcare professionals, service providers, actively advised for me to get my end-of-life affairs in order for me to give up work, to give up study, to start going to aged care daycare a day a month to get used to it. So bear in mind on 49, 50, when this was being said to me, I’ve got two teenage sons I’d been working a full-time job, studying a double degree, doing the usual busy family. I had a husband and we managed a house and kids to suddenly be told you had to give up everything. And worse than that, I actually lost my job when I came out about dementia. And nobody told me back then that I had disability rights, and nobody really, even today, sees or manages dementia as a disability, even though the World Health Organization has had it as the leading or a major cause of disability on their website for years. We still don’t have health care professionals or Alzheimers organizations, or service providers who support us as people with aquired disability. So it wasn’t until, uh, talking to a lecturer at university, and I guess being older, I’d become friends with a lot of them, and I saw them on one of my psych lecturers and said to her, I’ve been told I should give up study that it’s bad for someone with dementia. And she said, why would you do that? Go and see a disability support services in the same way your son would. If he was at university and had dyslexia or was in a wheelchair. And so the disability support people taught me to see the symptoms of dementia, not as symptoms, the pathway, only to death, but as symptoms of disability that could be supported. So that was huge change for me in the way I approached living with dementia. And it’s really why today, my my main kind of activism role is to try and get healthcare professionals and advocacy organizations and service providers to not just take away from a person with dementia by providing support to do for, but we need disability support to do for ourselves or to do with somebody supporting us. So that’s how the world see that.
Yeah it’s so great that you didn’t listen to those people. They probably thought they were doing you a favor or supporting you.
The problem is, it wasn’t just them that’s still being told to people today. We have new members of Dementia Alliance International signing up this week, last week, a month ago, and I’m pretty sure tomorrow, and nearly everyone is advised to get their end of life affairs in order, and to prepare for the end, not support to live with, but only to die from. And, as a healthcare professional, it’s the only disease or condition I know of where you’re only told to go home and get ready to die, and not actively supported to live.
Yeah, and I’m so glad. Wow. What a blessing for you too, to be in the role that you are to educate, bring awareness of folks with dementia that can continue to live 10, 20 plus years very productively. So thank you so much for you doing that. Your stories that you’ve shared; so you’ve experienced discrimination and you faced many stigmas. Do you have any other that you would like to share?
I’ve never experienced discrimination or stigma apart from that, as a woman, gender based stigma and discrimination, the same job for less pay and and less support. But it’s the first time in my life I experienced what the late Dr. Martin Luther King referred to as that sense of “Otherness.” I have felt at times like others treat me like a non-human being, and, I’ve been yelled at “What would I know, you’re just a person with dementia!” It’s as if, once you get dementia, the whole some of your past disappears somewhere. I’m not sure where it goes. I’m not sure where people think it goes because it doesn’t disappear. And as John Sanborn, who’s a co-founder of Dementia Alliance International, said in 2014 our first year, where we are in existence, we’re just changing in ways that other people aren’t, but everyone’s changing every day, all of the time from birth, and everyone’s going to die. So why die at diagnosis? It’s kind of, it’s a bit crazy to be told to get ready to die. Why not be supported to live Like I would have been if I’d had a stroke?
We are all changing, growing, developing, and let’s face it biology is biology, so our health will decline and that’s a very normal progression of life. And just because someone’s mind may be declining differently than others, that doesn’t mean that person ought to be preparing to die any sooner than any one of us. So, I think you raised a very good point.
Yeah. So I’m what some people would call a bit of a death groupie. I’m not scared of dying. I actually chose my funeral plot before my 18th birthday. I embraced life including dying, which was part of life. And, I, I have had the motto that, we’re all born with a death sentence for a very long time. So you might as well live every day as if it’s your last, just in case it is. You or I could get run over by a truck tomorrow. Who knows what’s around the corner. We’ve just had an Air Indonesia go down, and 60 people are no longer on this earth. Now when they got onto that plane, none of them knew that was going to happen, of course. So we really need to support people with dementia to live and to support disability so that we can live more independently for longer. And that doesn’t mean it’s a cure. But there’s been a certain price to pay for refusing to go home and wait it off. And there’s a new, so when you get dementia, one of the things that you commonly have said to you is that you don’t look like you’ve got dementia and there isn’t a certain look to dementia. There isn’t a certain look to high blood pressure, there isn’t a certain look to diabetes, or, maybe with cancer treatment, you might lose your hair, but it doesn’t actually look to most other conditions. And so there isn’t a look to having dementia either, but for those of us, who’ve refused to go home quietly and wait to die there’s a new group of actually professionals and academics who’ve been making pretty outrageous claims that, advocates like me can’t possibly have real dementia, whatever that is. And that to me is like a 20th century view of dementia that you get diagnosed and you go straight from there to death. It’s not like that, obviously. So, it doesn’t matter what you do. If you go home and die, that’s a waste of your life. And if you choose not to do that, then you get berated for not doing that as well. It’s a bit of a, not a win-win situation.
I am just really proud to, to know you and to have this conversation, because I think we all should have the attitude of take on living regardless of the condition of your health, your acuity level. Okay. Let’s face it. If you’re still living and breathing, let’s just maximize that. Thank you so much for that philosophy. I love it. Have any of your loved ones pushed back and wanted you to be less vocal about your diagnosis? And if so, how would you deal with this?
Yeah. So when I first talked about, and I used the expression coming out with dementia, and I was berated a little bit by my friends in that LGBTIQ community was going on… You can’t come out. We had to do that, but it actually, I’ve got gay friends who’ve got dementia and they said it felt like they were coming out again when they went public about having dementia. So it’s a bit like coming out of the closets. And I have certainly had family members object to me being public, so public about my experience of living with dementia. Some have walked away from it, nothing to do with me now that I am so public about it. I guess that’s their loss; doesn’t mean that doesn’t hurt. Um, and you just have to put that behind you because, I don’t know, maybe they preferred it if I did just stay home and quietly wait to die, which sort of seems random. I’m pretty sure if I had cancer they’d helped me fight for my life. And so what’s the difference between cancer fighting for your life and dementia fighting for your life? I don’t see any difference. But, the stigma factor is very real in the community and the lack of education of both healthcare professionals, but of real awareness of what dementia is and isn’t in civil society is huge. And so there’s a lot to do in terms of creating that change and that, yeah.
So now, why have you been campaigning for dementia as a disability and for human rights for all people with dementia for over a decade now?
I’ve been doing that because not to be provided number one, disability assessment and support is a turtle breach of rights. Not to be provided with adequate health care is a breach of rights, and the older population of people with dementia, many of those people report that the minute they get dementia, their doctors don’t worry about any of their other health issues. The rest of their health kind of gets put on the back burner. It’s like that. You’re going to die from dementia, so we’ll stop completely supporting you. Not to proactively support people to live with disability is a, it’s a breach of the CRPD, the Conventional of the Rights of Persons with Disabilities. If I had a stroke, I know that I would have been provided with rehabilitation. Not just someone to come in and help me with my activities of daily living. I would have been given speech therapy, occupational therapy, rehab, physio, brian injury style rehab. I know that because I was a past healthcare professional. I know exactly what I would have got if I presented with a stroke and yet being diagnosed with dementia, I wasn’t offered anything to support me to live independently. And, I’m pretty sure if you were diagnosed with dementia next week, you wouldn’t be offered anything either. So currently, unless you can, you are feisty enough to say, “Bugger” what they say, I’m going to do it my way and you have to know that there’s another way. And that’s only because I was a retired healthcare professional that I knew there was another way. If everybody around you, all the experts, all the service providers are saying, no no, don’t do that. Just go home and prepare for the end. If that’s what everybody tells you, the general population tend to believe all of the healthcare professionals around them. So they don’t think that there’s another way. And I’ve been involved in a lot of research projects and until you actually educate people with dementia, that there is another way to live with it, they don’t know either. So it’s really imperative that we campaign. I think collectively we need many more people to campaign for dementia to be supported as a disability.
I agree wholeheartedly, and wow. I just admire, just what you’re doing, who you are, the person that you are within dementia and I think it’s made you even a stronger person. So I love it. I just, I admire what you’re doing. I think it’s wonderful.
I’ve had a lot of personal trauma and other health issues over a long time in my life. I would say that every single thing I’ve been through brought me to dementia exactly where I needed to be which is a strange kind of way. And and, the irony of having dementia where some days the fog in my brain is pretty significant. It’s brought to me a clarity about life that I didn’t have before, and that’s such a gift. And maybe it’s lots of people I thought were close family or close friends have walked away, or I guess they weren’t my real friends anyway. Um, and the dementia community of people living with dementia that I’ve got to know and I’m privileged to support through DAI that network of people with dementia is like a huge global family. And to be able to enable and support and encourage people living in low and middle income countries, and Singapore and Taiwan, those types of countries to stand up and speak for themselves, and to demand services. In every country that I’ve worked in, it tends to be that they’ve never, ever had a person with dementia speak publicly before. And so that’s such a joy to me to I suppose be able to, in some small way, empower other people diagnosed with dementia to stand up for their.
That’s wonderful. Now, what was it like to be the first person with dementia to be the keynote speaker for the World Health Organization? What did that mean to you? You personally.
I guess I was pretty terrified. My, I do a lot of speaking or not since COVID, not so much. But I’ve done a lot of public speaking now in the last 10 years, but I wasn’t a professional speaker. The first time I went and spoke to a group of healthcare professionals, I had written a story as part of my university degree and I was meant to be a trouble journalistic pace and I just couldn’t, relatively newly diagnosed with dementia. I said to my lecturer, I just can’t focus on, writing about someplace I’ve visited. Can I write about this new place in my head called dementia? So I did that and then I sent it to a friend who was an editor of disability magazine and she loved it so much. She asked me if she could publish it. And so the first time I was asked to speak, I was so nervous. My, cause I lost my license quite early on. I’m was so nervous about doing it. I asked my transport person to read out the article I wrote and then all I did was answer questions or, respond to comments. So to be invited to give a keynote presentation at the WHO, the first minister conference on dementia, it was a bit nerve wracking. It was an incredible privilege though. I had a speech written, and at the end of day one they had announced the new data of how many people estimated to be living with dementia. And then I spent the whole day discussing a cure for dementia and my long-term academic friends probably say we’re not much closer to cure today than we were 40 years ago. And at the end of the day, why are you only talking about a cure, why aren’t they talking about improving care of the nearly 50 million people living with dementia? So at 2 o’clock the next morning, partly due to get lag, I was wide awake and where I’m going to change my speech. So I completely changed my speech and asked three calls to action, and one was for dementia to be supported as a disability, and for human rights, and rehab and also for a better focus on improving the care of people with dementia, not just research for a cure. And I was really pleased. Those three calls to action made it into the final call to action at the end of that two day meeting. That, I guess that it started what we call the snowball effect. Once you get invited to something like that, as long as you don’t offend somebody, you get invited back or something, you get invited to speak somewhere else. So you know, that was nerve wracking and, um, I think it was a really a pivotal point for the change in the recognition of the voices, the importance of the voices of people living with dementia. So there’d never been a patient group like DAI engaged so actively at the UN or the WHO. Most of the patient groups are run by people that don’t have the disease or the condition, and usually a parent or a guardian or, people interested in that. It’s a very, it was quite new that a patient group wanted to be so proactive at that level of advocacy. So I think that it’s been an important step in the change and, unfortunately still many organizations that provide advocacy and support for anyone impacted by dementia or affected by dementia. It’s usually the care partners. If you have a look on websites of most of the advocacy organizations around the world, and too, COVID, and COVID has been a bit of a bonus for people living with dementia because many more organizations are providing online support. So I think you live three hours out of town, and you can’t drive anymore, how can you get to a face-to-face support group? You can’t, but if you will, had a bit of spare time to waste and looked at all of the major national advocacy organizations, most of them provide support groups for care partners, and very few of them provide anything for people with dementia. And that was really why we set up DAI. Why was it that people with dementia had to stop providing their own support and advocacy? When we think about all the money that’s been spent for the last four decades within advocacy organizations, how come we had to set up our own online support? It doesn’t make sense to me.
I don’t think society is educated, embracing, supporting in just the awareness. I think we need to amplify that and I think you’re just doing a great job. The fact that you’re pushing out international support for dementia. I think there ought to be folks like you at more of a local level, but just really amplify it. More and more folks are raising that awareness because let’s face it. It’s becoming more common. It just, it’s too common because people are living longer.
Dementia is not a natural progression of aging. It’s not a normal part of aging. So even at 80, less than 50% of people will have dementia.
Declining of your health and whatever acuity level you are. Let’s say if you do have dementia, let’s focus on the living. Let’s focus on just continuing to thrive with dementia and as your health and memory declines with dementia, keep pressing on because whatever that you can deliver or live or contribute, let’s do it. The notion that you’re dying with dementia. That is very wrong. And I’m so glad that you’re doing what you’re doing is that we want to focus on the living. That’s humanity, it’s a gift to be alive at whatever acuity level you are in, and whatever, if you have breast cancer, you have diabetes, Parkinson’s. As difficult as it is, I think we all should try to focus on the living with those conditions. I commend you for what you’re doing. I, my mom is in the later stage of dementia, she’s in her mid nineties. It was at bay for about five years, but now it’s progressive. So we try to embrace what we can during that journey. Once it declines, it’s pretty aggressive.
When you’re in the latest stages of cancer, that’s aggressive too.
If you’re the latest dangers of motor neuron disease, that’s aggressive. There’s an impression out there that dying from dementia is worse. Somehow more devastating than dying from motor neuron disease or cancer or another brain injury. And I’m not sure why people think that.
Do you think, could it be that it’s a slow long goodbye perhaps, because even though your loved one is here physically, but the connection could be declining and maybe that’s why they think it’s worse off because for some folks it could be a long goodbye.
Yeah, I guess I really dislike that term. The whole of life is a long goodbye from the day we’re born.
We’re actually all saying goodbye. And so why, if you’re dying of cancer, why isn’t that not a long slow goodbye, but it’s not, nobody calls it that. And I think that I have a unique set of eyes, having nurses pay for dementia, having supporting family members with dementia, having dementia, and now doing research in dementia and running an advocacy organization. I think the worst position in the whole kind of awry of those positions. The toughest gig for me was when it was a family member or close friend, deteriorating, and then dying from dementia. That was much harder on me than it was on them. They didn’t see it as a long goodbye at all. I just thought they were changing. It was me. I was struggling. I supported a young friend. He was like a brother, but not actually a brother. And he didn’t have any family here apart from stepchildren and a couple of other close friends and we supported him. Unfortunately, he had to go into a nursing home and not have anywhere, who, any person here who could support him at home and is that the worst part of that for me, he was probably really watching him. He’d been a very high functioning, could speak a number of indigenous languages. He, worked a high level in government, and incredibly humble, generous high intellect compassionate friend. And I still miss Michael a lot, watching him change, watching him get confused about the different aspects of his life and put them all together in one story was harder, much harder for me than it was for him. And I suppose if we took that approach of the long good bye to everyone, we’d be saying goodbye forever.
That plane crashed, we’re on it. I just think it’s a lesson in humanity, dementia, and about us letting go of our expectations of how we want our relationships to be. And you know, the notion of me becoming the parent to my parent with dementia, becoming a child. I found that just so offensive. Yes my role might change if they had dementia, but I’m not the parent.
And even in my parents and my father died eighteen months ago, and to my knowledge didn’t have dementia, but, as he got sick with cancer my mother. If he’d had dementia, people would have said she’d become the parent, but she was his wife supporting him to live at home. And so I don’t know why it’s different with dementia. Is it the change of cognitive capacity that scares people? And I think that probably is and mental health, we’re still a long way from accepting mental health in our society, at least here. I don’t know what it’s like in your country.
I think so. I think you’re right.
Something to do with brain capacity is pretty scary for people, and maybe it’s that component of dementia, but, I think it’s important. Uh, dementia is not just memory loss, it’s, for many younger people like me, we didn’t really start with memory loss and lots of people don’t have any memory changes. There are lots of other disabilities depending on the type of dementia that, that we’ve got, there’s well over a hundred types of causes of dementia. And Alzheimers being the, the biggest percentage of all types of dementia, but even then there are different types of Alzheimers, some that are more aggressive, some that are more common. And I think that, a lot of academics keep saying Alzheimers all dementia or Alzheimer’s is dementia is one of more than a hundred types or causes of dementia. So it’s not either, or, and I still have people say to me, Oh, I’m so lucky. My mum’s only got Alzheimers. We’ve got we’ll actually one with this dementia. So you know, that myth is pervasive and the mystery of all memory loss. So if you’ve got dementia and you remember something, the amount of times I’ve had people say to me, “Oh, see, you remembered that you can’t have dementia.” There’s this bizarre misperception that it’s, profound memory loss. And of course it’s not, it’s not memory loss at all. It’s a change. It’s a change in your ability to recall memories and that’s different depending on which areas of your brain are impacted, which talk of dementia you’ve got.
I’m so glad that you’re bringing this awareness internationally, it’s so important that we bring this more and more to light.
I’ve written a couple of books. One that was my, my first book based on loosely, my experience of being diagnosed with dementia, but then more topical. So, you know, each chapter as a topic. There’s one on grief. There’s one on stigma. There’s one on human rights and so on. So it was not really a chronological typical Auto-biography star story. And then the next book that I co-authored, which was “Diagnosed With Alzheimers or Another Dementia”, my co-author, that was an academic friend from Sydney university. And it was the book I wanted when I was first diagnosed, but I didn’t want individual loose help sheets of which I promptly lost, anyway. I’ve got a one book that had everything “From Diagnosis to Death”, and it was really targeted for an Australian audience. And we are commissioning the broader financial national audience, but really that’s what people with dementia need. They need information. And I need information not just on dying from dementia, but I’m living with it. And you know, how to manage things like how to do with relatives who walk away from your friends and, how to do with living alone if you say 30% of people with dementia in the community live alone, how do you do with that? If you live alone, you haven’t got somebody else to remind you how to do stuff or when to do stuff. So sometimes, you, I find some of my friends who live alone are actually more independent and more functional than my friends who don’t live alone, cause they haven’t got somebody correcting them. And do they have to do for themselves? And so I’ve taken the approach of my husband and children who don’t live here, my husband does, but not my children. I asked them to be my backup brain, not my carer because
I love that.
carry on equal relationship. I don’t want someone to be my carer. I want them to support me, to be independent for as long as possible. And so a backup brain is like that. You opnly go to the backup on your computer when your computer crashes. And so the only time my husband would step in to help without being asked is if it was dangerous.
I love that backup brain and be your supporter and not your carer. I love that. That attitude. I think.
The term there is very strong in America. And if someone’s my care giver, that means I’m a taker. It so undermines the person with dementia to have a caregiver, or a carer, because it is an equal shift of power. And.
Yeah, very true. Very true. So thank you so much. I want to talk about your book. Okay. I love the title of your first book “What the hell happened to my brain? Living Beyond Dementia” It’s great that you’re able to have a sense of humor through this adversity. So do you find that a sense of humor and a positive attitude are helpful as you navigate your diagnosis?
Absolutely. Yeah, so I was born optimistic, thankfully, because I had a very difficult Childhood as many people have had, but a sense of humor and being by nature optimistic helped me get through that and has helped me through lots of other adversity. Certainly with dementia, my youngest son, because I’d had lots of other health issues, so the kids were quite used to me, and having to share some new thing with them, and my youngest son laughingly said, “But mom, isn’t that a funny, old person’s disease?” And I said I thought it was, but turns out I’ve got it. And, and, the first Christmas after I was diagnosed with dementia one of them said, “Oh wow, we can give you the same present year in, year out. You won’t remember.” And of course I do remember some things, but not everything. And so we’ve used humor to navigate challenges. I have always, worked on my own optimism and resilience, particularly because you do need resilience in just getting through normal life, but you start adding in complex medical conditions, start adding in stigma discrimination, ignorance, started adding on all that stuff to a complex health condition, and you really do need resilience to keep standing and keep pushing on, I guess. If I didn’t have resilience, I would have given this gig up 10 years ago.
Wow. What a great life philosophy, humor, strength, um, just appreciation. And that’s what I hear, despite adversity, you’re pressing forward, you’re continuing to grow, live and thrive and purposeful, and mostly just contribute and bring awareness and educate folks. So what a blessing, I appreciate this conversation that you bring more and more to light of what you’re doing. I think it’s so important.
Yeah. And, I think it’s important, no matter how dark your own day is, and that’s not to say you shouldn’t provide yourself with self care and self love and support, there are people far worse off than me, no matter what crisis I’ve been through. If you sat on a plane or a train, not that many people do that anymore. It’s like a different life doing that. If you sat and talked to strangers on the bus, every single person’s got tragedy and trauma and something in their life that is difficult to live with and difficult to navigate. And, I do some volunteering, away from the dementia space, partly because I wanted, my whole working career had wanted to do it. So the minute I stopped paid work, I started to volunteer in the homeless space. And you only have to meet someone who lives under a bridge when it’s 45 degrees Celsius outside or raining and one degree, and I live on in a box under a bridge, and you go home pretty lucky. Yes I’ve got dementia. Yes I’ve lost a partner to suicide. Yes I’ve had all these other crises, traumas, health things. I’ve got a lovely home. I’ve got a husband and kids and there’s a lot to be grateful for.
What a wonderful life philosophy that you have. So I want to talk about a little bit more on the book. Now, what made you decide to write books about your diagnosis and living with dementia and explain to me, the title that you have, and I love it? Can you share more about the details of that book?
Yeah, sure. So I, I dunno, I guess lots of people want to write a book, you know, I talk to so many people who say, “Oh, I’d love to write a book.”, and the process of writing a book is, it’s quite a hard process. It’s cathartic if you’re writing personal stuff. But I had used journaling to support myself to learn to live without my partner, that took his life when I was 27. And that was a profoundly life-changing experience. And I had been taught by psychologists to start journaling about my grief and it wasn’t until I hadn’t applied that to myself, when dementia turned up, I was spinning to start with. And then, I read these excerpts from Richard Taylor and he’d been a psychologist, working with troubled youth. And one of the therapies that he asked his clients was to start journaling. And I went, “Oh why aren’t I doing that?” So I started writing and I set up a private Website I suppose, and I called it “What the hell happened to my brain.” I think I had a, I might’ve had an extra word in there in the early days. And then I started blogging publicly. So, my, I opened up a new website and started blogging, it took me a few months to actually work out how to post an article. And it took me a few months to even tweak that, my blog was a public place where anyone could visit. It wasn’t just a dozen or so close family and friends. And, but I was encouraged to write that because I had a niece who’d said to me, “You should write, write down your story for your kids and for us.” And but I don’t think I would have published a book if I hadn’t had the experience of publicly blogging and what happens. I don’t know if you’ve ever been a blogger a Hanh, but when you become public talking about deap and meaningful, personal stuff. To start with you get lots of really enthusiastic followers and then, and comments and you feel the love of people around you. And at about the three to four month mark, you get the haters turn up and the awful stuff that people write about your personal experience. And I’m not wright, I’m not wrong, it’s just me on my website. And I used the late Wayne Dyer’s approach to the lovers and the haters of what I was saying by thanking people for their opinion rather than not accepting a main comment. So there’s lots of mean comments on my blog from over the years. Not now. I don’t, I’m not very active now. But, it was because I’ve made this goal to write a blog every single day for a year to get myself in the habit of it. And then I did get quite a large following on social media and, um, Jessica Kingsley Publishers actually approached me. I had, I thought about writing and books. Oh, okay. So I went down that pathway and I found that, if you’ve ever been a bit of a perfectionist writing a book, It’s tricky stuff cause it’s never perfect, ever. It’d be like being an artist, I’m guessing. I’m sure every artist that looks at a painting, “Oh, just a bit more green here, or a bit more something there.” And a books, when you have a publisher, you at least have someone who can go, we’re going to shift that around a little bit and check your spelling and grammar, and even with that, there was still a number of grammatical mistakes yeah in that book. But, the experience of writing that book was helpful for me in my own healing, but it’s been I’m told by lots of people it’s been a very useful book to help them navigate the diagnosis of dementia, either themselves or a family member. I do need to write another edition because there’s three chapters in that book that I had completely changed my opinion on some stuff and would write very differently now. I approached the publisher and I was amused actually afterwards. I said, “I’ll just write another book, not a second edition.” So that’s not, I don’t, lazy, just write another book. So I will at some stage, um, focus on finishing another book, but it’s when the only advice you get is to prepare for the end, to have something that other people can go, “Oh, okay, so maybe I can live a better life with dementia without it being so awful, without being as devastating as the media portray it.” I’m not a victim of dementia at all. I’m not a victim of anything anymore. And too often we are portrayed as suffers and victims of a hideous disease and it’s actually not that bad.
It sounds like you’re empowered.
It sounds like you’re empowered and you’re very strong with your attitude, mental and physical. That’s what it sounds like.
That’s a work in progress. So Hanh, because there are people, every day who somehow think it’s wrong that people with dementia can live positively. And I’ve had family members, so they’d rather be dead than have dementia to my face. That, how does that make me feel? It could destroy me if I let it, but actually won’t, it’s not that bad, dementia. It’s awful watching someone with dementia. I will say that my husband has said many times that it’s harder for him to see the changes in me than it is for me to live with them. It’s not a, it’s worse for him than it is for me. It’s not a competition. It’s, some of the changes I have. I don’t even notice until he points them out or tests highlight them. I didn’t even notice them. And, I suppose as you age, you don’t really notice your skin changing or your eyesight changing, until you need glasses, but they are changing all of the time. And I think the same with dementia, half the time, we only notice what’s happening because it keeps being pointed out to us, or the media talk about, some of the things that are happening to us as if it’s the most horrific thing you could ever go through. And I don’t think it is. I think domestic violence is far worse than having dementia.
I think it’s so important, the work that you are doing continuing to bring light on this dementia. It doesn’t matter what acuity level that you’re in we ought to just focus on the living part of it. That’s our gift as humanity.
Yeah, I saved that, the world would change dramatically if we all focused on living positively, but also on kindness towards each other. And, I think the current state of politics in the world has really highlighted the, the differences. And if we can just accept that, we all think differently about everything from food preferences to politics, to religion and not let, you know, we don’t argue and hate each other because we like different food. Why do we as a human species fight and argue over having different views in politics or religious views or, it’s it, to me, it’s bizarre? We should all just be kind and non-judgemental, but that’s harder to live than it is to say.
Yeah, it is. Dementia is a difficult diagnosis to deal with both emotionally and physically, but I’m curious if there’ve been any silver linings around your diagnosis? Has being diagnosed with dementia, led you to any positives in your life?
Definitely. I would say of that dementia is my third greatest gift in life without a doubt. So being born is a gift, of course, my partner who took his life, I didn’t assume he didn’t say it or think it at all for the first 10 years after Dave died, but at, around 10 years I started to see his death as a gift to me, probably the greatest gift he ever gave me in the six years we were together. And that was because he lived with, significant mental health issues that were difficult for us both to live with many times. And in the end he couldn’t bear life. He was a very high functioning medical specialist and he just couldn’t really bare life with the demons in his head and you know many years later I saw his death, not as suicide, but as almost euthanasia, because if he’d had cancer and euthanasia was legal, he would have chosen death. And he had, I see what he had to live with, almost like having cancer in your heart or the soul. And in the end, he couldn’t manage it. Couldn’t bear the treatments and couldn’t bear living with it. So I don’t think I would have left him, but him leaving made was actually a gift because it allowed me to have a new life, a better life. And then of course my children are incredible gifts in my life. And then I do think being diagnosed with dementia is the greatest gift I’ve ever been given really or accepted. And you know it has given me a clarity about life, about as a people about humanity. Oddly, about myself, it’s made me face you know, I’ve been very much into facing my own demons and looking in the mirror and being really honest about not just my positive sides, but my flaws, because we all have them. And dementia’s really helped with that because you can go, some of those things don’t even matter at the end of the day, they’re a little different. What does it matter? I like avocado you don’t for example, do we argue about that? No. Why didn’t we argue over politics? I’ll never know why, because no matter which political party you belong to, you’re still a good person. And the people on the other side are still good people. Their mothers still love them. Their kids still love them. They’re not bad people, they just think differently, they have different opinions. I want to say dementia really highlighted that for me, because having to fight to be supported, to live with dementia and with the disabilities, the increasing. Having to fight for that. I should never have had to fight for no one should have to fight for the wright to be supported to live. And yet people with dementia every single day of the week are still fighting for that twelve years after my diagnosis. So that as an, a, I don’t see myself as an advocate, I’m much more of a campaigner now. I don’t think that the three decades of current dementia advocacy that we have come to know, I don’t think it’s yet been very effective telling stories is not enough. We actually need action and empowering newly diagnosed people to tell their story is fantastic for them. And it’s fantastic for their healing and their ability to live with dementia in a more positive way. But it hasn’t, it’s not really changing at the grassroots level, what needs to change. So if if I was diagnosed with dementia next week, if I was still told to get my end of life affairs in order, I would say that my 10 or 12 years of work is a complete failure.
I think we’ve been telling our stories and hoping for change for too long. We need to do a lot more than just hope for change. We actually need to force it and using that lens of human rights and the CRPD dementia as a disability is the vehicle for us to be able to do that.
Anything that we can do here I’m there with you. I thank you so much for this opportunity to shed light, educate and inspire your journey. What a powerful way to live, you as a person, what a powerful message so it’s an honor to have this conversation.
Well I’m privileged to, to be with you and really to talk about dementia because we need to bring it out of the closet and talk about it and normalize it. People need you most when that diagnosed with a critical illness, whether it’s cancer or whether it’s dementia, and currently the experiences that if you get cancer or motor neuron disease, people, family and friends flock around you to offer support. But when you get dementia, people walk away, and we, we need the exact opposite to that. This series, like what you’re doing, helps to normalize that as well. I had a lesson as a young nurse, just out of my training, the first position I took after I’d finished, my training was ironically in Adelaide’s first dedicated dementia unit. But before that unit opened, it was just in a nursing home. And I was told by the senior staff not to waste my time on “Patient X.” And we call people living in nursing homes, patients back in the seventies, we’ve don’t now, we call them residents. And I was told not to waste my time on this lady because she was mute, anyway, that, I had a lot of spent a lot of time with elderly relatives and I have a lot of elderly friends, and so that to me was like red rag to a bull. That meant I spent extra time with this lady because I felt like she was probably really lonely because nobody talked to her that they didn’t even act like she was there. And so I just talked to her like you and I are talking and I took her to the washroom this day and, you’ll have nurses in your audience. It’s a busy job, particularly poor, awful job now with COVID, but in any days are really busy job. And it was a huge day that day, and I jokingly said to this lady, “Oh, hurry up and have a wee.” And she looked at me and she twinkled in the eyes, and she said, “Do you think you can have a wee for yourself?” And I said, cool. I knew you were in there. Why won’t you talk to anyone? She said, “Why would I waste my breath? The rest of them out there treat me like I’m stupid.” And she only talked to me in the washroom and the bathroom. Unbelievable. So she wasn’t mute, but she’d been treated like she was, she’d been treated like she wasn’t all there, in actual fact, she could hear everything and I’ve forgotten the lady’s name. I might not remember the words you’ve spoken, but I’ll remember the way you made me feel. That lady up until me deciding to just treat her like you or me. She felt worthless, like a non-human being, like she wasn’t worthy of love and respect. So she could hear everything and she could feel everything, and she just couldn’t be bothered speaking back to people who didn’t treat her with humanity and respect. And so that, that was a good lesson early on as a nurse. And I think that’s the really important thing with supporting people in the later stages of dementia is to remember they’re still all there. And even if they can’t speak, they can probably hear you. And they probably can see if you look upset or if you look like you can’t be bothered or, they don’t just see the good stuff. They see the bad stuff too. And we know now that people with or, who can’t speak at all, still have other ways to communicate,
but somehow when it’s dementia, we assume that there’s nothing.
That’s true. It seems like they might be short of that’s true. Yup. They may be short of, one sense, but they’re other senses are much more stronger, at least that’s what I’ve seen in some relatives.
Yeah. Yeah. A friend of mine in Australia, she’s a fantastic keynote speaker, and also she is, I don’t know if she’s still working, but she was the voice behind a character called “Blinky Bill”, which is a kids book series, and she would make phone calls to kids with terminal illness as “Blinky Bill.” So shes this really vibrant dynamic woman, and she has done a lot of MCing and speaking in the dementia space because her mom had dementia and other family members, close family members. So her own sense of possibly getting dementia was quite high, but she, the first time I heard her speak, she spoke about what she calls first time. So her mother was quite advanced with dementia, living in a home and the first time, but her mum didn’t know who she was. She was deeply and profoundly upset, and, and then stopped wanting to visit her mom because every time her mam would say “Who are you?” she’d feel terribly sad, and, and then one day she decided to change it, turn it round. And she said to her mom, she said, “Who am I? I’m your daughter Mom.” And her mom would say, “Oh, have I got a daughter?” She’d say, “Yes.” Then “Here’s a photograph of you holding me as a baby.” Or, and then she said, “And you’ve got two daughters and this is your other daughter.” So every time she saw her mom, it was like the joy of meeting someone for the first time. So that was an incredible lesson for me. Even if I’m with someone who repeats themself, all the time, don’t, like in, in some of the more common Alzheimers where, you remember your childhood and your youth, but you can’t remember what you said three minutes ago. Every time you see someone like that, whith that stage of dementia it’s first time. And we treat it with the joy of a fist meeting and then maybe some of the pain shifts so we can have a, a more real conversation and a more real relationship with people. That’s a wonderful way of approaching it. And I’ve tried to adopt that attitude more as well.
That’s wonderful. Family members clinicians, it’s, we’re all in a learning mode, especially family members, because just like when you’re first, your loved one, in my case, my mom was diagnosed with dementia, and it’s unfortunate. You go through a period of feeling like perhaps you’re alone, perhaps this is something that to be shameful, you know? So you go through all this process and then you come to a realization, at least for us, that mom is still here every day, she’s still here. And her stories of the past is a reflection of her memories of moments that she enjoyed the most, and I think that’s along the way we learn to appreciate those stories. And then we learn to be a part of that journey with her, although it took a while to get here because the more family members that you have The more input, the more folks that think they know how to talk or care from mom and so forth. So the family dynamic changes. Let’s face it. The relationship with the loved ones change, the relationship with the family, the siblings change. As you go through this journey, I found out that you go through it, you denial shameful. You laugh and you cry, and then you laugh when you cry, and you just go through this life journey and just have to be accepting and focus on the living. I don’t care what health conditions we’re in. It’s the same thing. We’re all a work in progress. We’re all going to life changes. And We want to be around our loved ones as we age, whether it’s at home or whether it’s, another home in a community, but the bottom line is we want dignity. We want choices. We want to have a purpose and contribute and be around a loved ones. It’s is humanity. It doesn’t matter that you’re, a senior or one would dementia with cancer, diabetes, it’s humanity. That’s what we’re meant. That’s why we’re made.
Exactly. So we all got incredible stories to tell. Everyone’s going through or been through or going to go through pain and suffering and change. And eventually we will all die. And I, I’ve been very OK with that for a very long time, but not everybody is. I remember doing a workshop, was at that for a conference of religious leaders in Australia, a number of years ago now, and in the question time, the first question I got was how does it feel knowing I’m going to die? Wow. I sorta stayed quiet for a moment, and then I started to respond by saying “It’s okay. I’m okay with it. How was it for you knowing you’re going to die?” And this religious leader she looked a bit taken aback and she said, ?”But I haven’t got dementia.” “I said no, but the one guarantee I can, the only thing that I can guarantee from anything I’ve said today is that every single person in this room is going to die. So what’s that going to be like for you? So let’s just stop worrying about it. Let’s just get on live.” And she said to me afterwards, it was a profoundly meaningful listen for her, but I would have thought as a, And I should never have expectations, but most religious leaders have, they’ve done funerals and they’ve been with dying people. It’s not just Christians, the baptisms, it’s death, usually if you’re in ministry. So I was a funny question, but I suppose until you’re facing a critical illness yourself, most people don’t think about dying. And so that’s, I’m abnormal in that sense, not normal.
I think you’re realistic, I think you have gratitude and you’re more realistic. I think it all boils down to it’s what’s in your heart, don’t you think? Sure, it’s very important what’s in your mind and your actions and your choices, but guess what all of that is rooted from what’s in your heart.
Yeah, absolutely. I couldn’t agree more.
I love this conversation. I really appreciate your time. Do you have anything else that you would like to share?
Anyone supporting people with dementia, please think about referring them to join Dementia Alliance International because we provide a lot of phone support for people living with dementia and the comradery, that sense of kinship and family amongst people living with dementia is very strong and I’ve been exposed to the power of Peer to peer support after David took his life in Adelaide’s. A group called The Bereaved Through Suicide Support Group was founded and I joined that soon after it started. And all of the support workers had to have also been bereaved through suicide so that when you ran a support group, a peer to peer support group, you actually did know what it was like. And so the value, I can’t stress enough, the value of peer to peer support, and allowing people with dementia, no matter what stage they’re in, or no matter how somebody else observes their capacity to communicate or contribute is usually once they’re amongst a group of people with dementia, their capacity changes, dramatically, goes up dramatically usually because often at home or in a nursing home, people get used to being corrected, being talked over, being told they’ve forgotten all of that. So people got quiet, they stopped talking. And I see that all the time when I’m going to focus groups and workshops. People with dementia who are maybe at a table with their family member or care partner. They say almost nothing in the workshop, but during lunch and morning tea, they never stop talking. And I’ll say to them, “Why don’t you speak up during the workshop?” “Ahh, I can’t be bothered, on the way home I’ll get corrected or told I’m embarrassing” Or, so I think the message to other people is to allow us to be whole in whatever way that is for us, and to include us equally.
Wow. There’s so many powerful messages that you shared, and I know it’s going to resonate with the, well it has with me, and I know it will with many of the listeners, and I would highly encourage if anyone looking for dementia support to reach out to you and your team and what a wonderful job, what a wonderful privilege and a task that you are taking on. So thank you so much.
Thank you, Hanh. It’s been an absolute pleasure to be with you today. Thank you.