Hold the Moment LIVE! It’s time to talk about dementia
A live recording from the Sydney Opera House.
Transcript
[BEGINNING OF RECORDED MATERIAL]
[Opening titles play reading ‘Hold the Moment, It’s time to talk about dementia, Dementia Action Week’. Applause as Hamish Macdonald and Jim Rogers stand on stage at the Sydney Opera House.]
Hamish Macdonald: Well, hello everybody. Welcome to the Opera House. Welcome to Hold the Moment Live, brought to you by Dementia Australia. Would you please get the room started?
Jim Rogers: So here we are at one of the most iconic venues on the planet, the Sydney Opera House. Who'd have thought when we started this a few seasons ago that we'd be now doing a recording in front of a live audience to celebrate Dementia Action Week?
Hamish Macdonald: My name's Hamish Macdonald. I'm a journalist. I cared for my dad, Ian, who was living with Parkinson's and with Lewy body dementia. Who are you?
Jim Rogers : My name is Jim Rogers. I'm a soon-to-be published author. [Applause]. Thank you so much for that. My book, Holding On to Happiness. I'm a podcaster with this guy, and I'm living with young onset Alzheimer's. So if I stuff up or get things wrong, I'm allowed to, but this is the professional, so he can't.
[Audience laughter].
Hamish Macdonald: Every year, Dementia Action Week turns the country's attention to what is now, sadly, our biggest killer in this country. This year, though, the task is simple, and every one of you here, everyone listening, has a role to play, because the theme is that it's time to talk about dementia, which is lucky for us because it's it's what we do.
Jim Rogers: Yeah, and talking about dementia is obviously something that's very close to my heart. In particular, you know that, Haim. We've talked for many times about it. When I first started noticing symptoms myself, I had no idea what was happening to me. My mind was racing with possibilities, and none of them were pleasant, I can assure you. But once I started talking to people, I started learning about how to manage dementia and about how my life might change as things progressed a little.
Hamish Macdonald: And I suppose what I've learned from Jim is that once people start talking, they just don't stop. And yet here we are, four seasons later, and doing a live show, still talking about it Jim. The point is that those conversations can happen everywhere and anywhere, and that's why you're all here today. And I suspect for those of you listening as well. What we what we're saying is that this can be an intimate chat with a partner, with a kid, with a friend. It could be a clinical conversation with your doctor, maybe it's a talk with someone at work, maybe it's someone that you don't know that well, but you need to be open to have the conversation. Talking about dementia does help everyone that is involved in that journey, and our guests today on Hold the Moment Live are going to give you a sneak peek into why that matters. Joining us on the program today will be the star of stage and screen. Her name is Jessica Redmayne, as well as that, clinician and researcher Dr. Anita Goh, and the unstoppable, I really mean unstoppable, Dementia Advocate Heather Cooper, who is living proof that dementia doesn't have to mean slowing down. She may also introduce the interpretive dance component to today's proceedings. [Audience laughter]. Here's your challenge, Heather.
Jim Rogers: Let's see what happens there. Some of you in the audience today are going to get the opportunity to ask our guests a question. So if you're one of those people, get your questions ready.
Hamish Macdonald: And on top of that, please get excited because we'll have a special guest performance from one of Australia's most beloved singer-songwriters. You know him from Hunters and Collectors. Would you please welcome Mark Seymour? [Audience applause].
Jim Rogers: Okay. Without further ado, let's get this started, Haim. This is Hold Moment live from the Sydney Opera House.
[Audience applause, hosts are seated on stage].
Hamish Macdonald: Okay, so our first guest is a Dementia Australia ambassador. She's an actor best known for her work on Home and Away. Of course, we've stolen her away from the Northern Beaches. She's also on stage a lot of the time. She's recently finished a national tour of Steel Magnolias. Through her 20s, though, what you may not know is that her mother Christine lived with dementia. Sadly, she died in 2023. We're going to explore some of this. Would you please give an enormous and warm welcome to Jessica Redmayne.
[Audience applause, Jessica Redmayne enters the stage. Hamish and Jim stand to greet her, they exchange a hug and kiss on the cheek and are seated].
Jessica Redmayne: Thank you.
Jessica Redmayne: Thank you. Thank you for having me.
Hamish Macdonald: Thanks for being here. It's really exciting for us, and we're looking forward to talking.
Jim Rogers: Yes, so lovely to have you here. Thanks for making the time for us. So many Australians were absolutely gripped by the storyline, which was shown on Home and Away about Alzheimer's, and it's centred around one of the show's most iconic stars, Irene, who's played by Lynne McGranger. Where did the idea for that that plot come from, Jess? Share with us.
Jessica Redmayne: Yeah. So, as Haim said, my mum passed away in October of 2023, and at the time I'd been on the show for six months, and my character Harper lived with Lynne McGranger's character Irene in her house, and four months after my mum passed, Lynne came to me and said, "I'm considering retiring from Home and Away, and I would like to leave with a storyline of Alzheimer's." And that was well, I should preface that she said that in honour of my mum, and to spread awareness for dementia as a in overall, and I was touched and very flattered, of course, that that she wanted to do that. But it was difficult to approach from in terms of being on a soap and being a very heavy topic to discuss on seven o'clock television. So, it was, we did approach it with a with more of the joyous sides of Alzheimer's, and yeah, it was extraordinary the amount of people that it really, I was just so flattered that we had that platform to further spread awareness to families not only all across Australia but globally, because obviously Home and Away is still huge in the UK, and it's aired in 90 countries. So we've reached the family homes of a lot of people.
Jim Rogers: What an incredible tribute to your mum, to bring that topic up on something that is watched by millions. I mean, I remember it in the UK. It was massive. Home and Away was so powerful then.
Jessica Redmayne: Yeah.
Hamish Macdonald: I wonder for you what it was like, Jess, creating a character because you sort of worked with Lynne, right, on talking about some of the characteristics, some of the features of life with your mum. You know, that's quite a lot of yourself and your own experience to put into a character, and then be playing alongside that.
Jessica Redmayne : Yeah, so the writers were very specific about not involving my character too heavily in Lynne's storyline. I was still involved, but not, not too much for my own personal sake. But Lynne did come to me a lot and ask a lot of questions about what my mum was like and and sort of physical attributes that she could add to the character, and I must say that Lynne did such an extraordinary job. I would have to not watch her when she was working, and so when I was in scenes with her, I would actively not because she was so convincing that it was quite. I saw a lot of my mum in her when she was playing the role, but I really had to sort of disassociate, split my brain, and go, Jess, you need to be an actor now. This is your job. We, you know, I've got to be Harper and not bring too much of my own emotional emotion to it because it was it was really challenging to work with her.
Hamish Macdonald: Can you tell me about the tea towels?
Jessica Redmayne: The tea towels, yes. So my mum had this action of when, correct me if I'm wrong, but but dementia patients, they or my mum specifically, she had sort of a sensory sensation in her fingertips, and she had this obsession with with touching things or repeatedly. She would hold the tea towel. She'd carry it around the house, and she would rub the tea towel with her fingertips.
Jim Rogers: Almost like a comfort blanket.
Jessica Redmayne: Yeah, kind of. In a way, she would. Yeah, she would move her fingers up and down the tea towel. And so I, I told Lynne about that, and and sort of the the look in her eyes. And Lynne really took everything I said and really applied it to the character, and again, it was so touching for her to do that.
Jim Rogers: And that's-is it around 12 years ago now since your mum was diagnosed? Is that about right?
Jessica Redmayne: Yes. Yeah.
Jim Rogers: And how do you think, with all the awareness that that brought, you know, to the public, how do you think the relationship with dementia has changed now? Do you think it's changed for the better?
Jessica Redmayne: I think that dementia has a much bigger voice than it did 10 or 12 years ago. I think it's changed astronomically, really. Maybe only in my world, but but I would like to think it's it's grown, as we can tell by the numbers, it's the leading cause of death now. And when my mum was diagnosed, my dad and I had no idea what was going on, and to, to the point where I remember my dad going to a doctor's appointment for himself. My mum was in respite care at the time, and he went to discuss his own health with the doctor, and. He brought up mum's situation with this young doctor, and the young doctor said to my father, "Are you sure that your wife has dementia? She is too young." And my mum at the time was in care, so she would have been 64, maybe 65, and that was that to me still shocks me to this day. That a that a doctor at that time, and I have to give them, I kind of forgive them in a way because that was also a doctor in rural Victoria, and he was very young. But that just goes to show that's how how how it's perceived, and that we need far more awareness, which bringing it back to being on Home and Away is just-it's extraordinary because we are reaching more people and more homes.
Jim Rogers: And people really absorb that message so easily when it's portrayed so well the way that you did. It is difficult, and it is a message out there that you know, we're all learning as we're going along, and it's not just old people; it's young people as well. It's not just old. I remember my first GP saying, "It's not going to kill you", and you think, "Oh my goodness, you know, how much education do we need?
Hamish Macdonald: Jess, I guess for anyone that has lived with someone or cared for someone that's living with dementia. At a certain point, it becomes difficult to disentangle them from the dementia. It's a couple of years now since your mum died. How are you remembering your mum now?
Jessica Redmayne: I remember my mum as the charismatic, full of life woman. So I, as you said, I just did a play, just to make it about myself. I just did a play around the country.
Hamish Macdonald: She's an actor, you're allowed to make it about yourself.
Jim Rogers: Pretty incredible performance.
Jessica Redmayne: And a lot of my family came to see this play, and a lot of people that knew my mum. And everyone that knew my mum that came to see this play said, "Oh my goodness, you are so much like your mother", and and because of the way you know the the physical attributes and the things. And I think if my mum had her time again, and if she was raised in a different way and didn't go through the hardships she did, she probably would be living the life that I'm living. And I think she she also paved the way for me to live this life. I don't know what your question was, but I made it about myself.
[Audience and panel laughs]
Hamish Macdonald: But it sounds like there's an element of doing this in part for your mum.
Jessica Redmayne : Absolutely, absolutely.
Jim Rogers : Was she a big fan? Was she a big supporter of of what you wanted to do?
Jessica Redmayne: Definitely. My father bought me a pony when I was a child, and I fell off that pony three times and said, "I'm never doing it again." And then my mother took me to dancing lessons, and she was like, "She's going to dance, she's going to dance. And then I danced for 25 years, and then I went on to do everything I've done is because my mum encouraged me. She never pushed me, but she encouraged me and gave me so much love and support to do whatever it was that I wanted to do. She told me to chase the stars and follow my dreams, and I did that fighting tooth and nail.
Hamish Macdonald: Sounds like she wanted you to make it about yourself, Jess.
[Audience and panel laughs].
Hamish Macdonald: Jess is going to hang around for the rest of the conversation, but would you please thank Jess?
[A pre-recorded video segment plays on screen here, featuring several contributors. First is Georgie Gardner, Journalist and broadcaster, who has self-filmed a message].
Georgie Gardner: Georgie Gardner here. It's well and truly time we talk a lot more about dementia. After all, it is Australia's leading cause of death in both women and men. The more we talk about it, I guess, the more we understand it. And this Dementia Action Week feels like a perfect time to get the conversation going and to ensure those going through it, or their friends, family, and carers, know that there is help and support available. Thank you.
[Video of Takaya Honda, actor and Dementia Australia Ambassadorbeing interviewed off-screen by Jess Redmayne].
Takaya Holda : My one message to everyone in Australia is that you're not immune, and this is the leading cause of death.
Jessica Redmayne: If you could send a message to everyone affected by dementia, what would it be?
Takaya Honda : Come to a Memory Walk and Jog, because if you are experiencing dementia, it is the most comforting experience you can have.
[A video of Biance Dye, Radio Presenter, shows her holding a giant post-it note that says ‘It’s time to talk about dementia’].
Bianca Dye : One thing I've learnt, because I'm caring for my mother with dementia, if you've met one person with dementia, then you've met one person with dementia, because it shows up differently for everybody. So you've got to be compassionate. Everyone's different.
[Recorded videos end, live event continues].
Hamish Macdonald: I think everyone in this room probably knows that when dementia touches you or someone that you love, you want answers from people who know the science and who sat across from patients too. Our next guest is both of those things. Dr. Anita Go is a clinical neuropsychologist, which is a mouthful, I know. She spent her career supporting people who live with dementia and their families as well. And as a researcher, her work is helping to shape how dementia is understood and how care is delivered right across Australia. Would you please welcome to the stage Associate Professor Anita Go.
[Audience applause as Professor Anita Go enters stage, greets other panellists and sits down].
Jim Rogers: Hi, Anita. Thanks so much for joining us. A pleasure to have you here. Dementia affects people physically and mentally, obviously in serious ways. But what about the social side of it?
Anita Goh: Great question. So thank you for having me. I'm very excited for this conversation and to bring the conversation out there across Australia and wider, and especially that exact point that you said, that you know, dementia really is a great public health challenge. You know, it's already been mentioned twice that it's a leading cause of death in Australia. However, all these people living with dementia live in our society. They live as our mothers, as you know, our husbands, our partners, our parents, our workmates, our neighbours, which makes it a social, a social issue. And I think what I've seen in my career so far, really happily, is really that inclusivity and moving away from that overmedicalizing part of dementia, and really embracing people living with dementia as part of our fabric of society. So we have a a thing now that we call social prescribing, and I think that is something that we do where we can prescribe things like social connection, which we know is really important for people, all humans, and it's about social connection. And someone gets a diagnosis of dementia, yes, but we need to think about how they can still live a life of purpose, still live a life of belonging, do the things that is meaningful for them and their personal preferences, and really think about how to keep people connected.
Jim Rogers: Yeah, I mean, for myself, socialisation is so important, and that was something that was reiterated to me. So, sort of, could you explain to us how dementia care is changing so that we can factor in the social element and not just the clinical one? How would you go about that?
Anita Goh: So, for me, I think fundamentally, I'll start there. It's really a human rights issue, and we have kind of a new age care act, which is supposed to look after dementia care, of course, and it has human rights now, kind of fundamentally in the act. And because of, you know a diagnosis of dementia, you still want things that every other human want. It's not rocket science. People still want autonomy and dignity, and to live life according to how they want and their personal values. So it's about that wraparound care. So medical care, but also social care, emotional care, dementia inclusive communities, and really thinking about what person-centred care really means, and not just saying that as a throwaway comment, but really, what does this person actually value? So, as a clinician, we say, you know, often, you know, you have this symptom, so obviously you want to treat that, but maybe that's not actually what that person wants. It could be, I actually want to read a book with my grandkid, or I want to be able to do a marathon, or I want to be able to keep going on with my job, but maybe with some reasonable adjustments. So I think dementia care is moving along really happily in that person-centered care is becoming actually a meaningful and measured thing that people measure for kind of government statistics as well, and so when we measure it, things tend to start happening.
Jim Rogers: Yeah, and obviously as we talk about it more and more, the more those things happen.
Hamish Macdonald: Anita, I guess for a long time, and maybe it still exists for some people today. There's a perception that if someone gets a dementia diagnosis, they go into residential care. You shut the door. Maybe there's a visit every now and then, but that's kind of the end. And obviously, the science, the the medical practice is telling us there's a totally different approach. But how big a leap is it to kind of educate us as a society to think like that?
Anita Goh: Yeah, I think there's one thing that has really kind of stuck with me through my career, and something that Dementia Australia always mentions as well is that if you've met one person with dementia, you've met one person with dementia. Everyone's so different, and dementia also is an umbrella term as well. There's like 100 or more different types of diagnoses that are called a dementia, and there's the typical dementia that you would know, which you know typically affects people who are older. There's also young onset dementia, where symptoms start before the age of 65. And there's also childhood dementia as well, so there's so many different types of symptoms and so many different types of humans. You know, I like to say that humans are my favourite animals [audience and panel laughs], and you know, one person
Hamish Macdonald: Not to their face.
Anita Goh: And someone can have the exact same diagnosis, but then how people react to that. That makes a massive difference to how they can live well. But when you know someone and you know their likes and dislikes, you can tend to kind of provide a bit more personalised attention. And when the whole community does that, and when the whole community tends to talk about these things without the stigma, without fear, I think in my whole career, asking some very silly questions sometimes has never made it worse. It has opened up the conversation, and sometimes I'm scared of saying the wrong thing as well. But typically, it makes that elephant in the room a little bit smaller, and maybe I can say, you know, I don't know you, and I don't know your family. I'm just going to ask this question, but that stigma tends to disappear with every conversation, and it makes it okay to ask about things. And that, personally, is applicable to the whole journey through diagnosis, which is very hard for some people. I mean, some communities don't even have a word for dementia, all the way through to end of life care. But I think at every stage those conversations are so important just to have. And what I really want to get across is your words don't have to be perfect. My words are very often not perfect, but it's more about just opening that door and then knowing there's support as well. You know, there's researchers, there's clinicians, there's Dementia Australia, which has 24 hours support. So you can open that door, and you can make little inroads. But so can everybody else as well. It's not up to one person.
Jim Rogers: You make. I was just going to say you make a very good point there. You know, and I think from somebody once diagnosed in that stage, it is terrifying to know how you could change. And so none of us have the answers, and it's a very scary road to navigate. So yeah.
Hamish Macdonald: I'm curious because Jim, you've talked plenty of times before.
Jim Rogers: You're getting a lot of jokes in today. [Audience and panel laughs].
Hamish Macdonald: No, no, no. Just, just noticing a few themes. But you, you have talked about how much you've done and achieved with your life post diagnosis, right? And clearly, that's something that's been a huge focus for you and the family. But I'm just interested, listening to this conversation, whether you think that the social components of all this stuff you're doing, whether it's writing a book with your daughter, whether it's doing the podcast, like we've met so many people, had so many conversations. Do you feel that's helped you in terms of living with dementia?
Jim Rogers: Honestly, I cannot point to words how it has. And I, when I was diagnosed, I literally thought that was it, and and I started focusing on all the bad things that were going to happen, and I imagined it to be rapid and just go downhill really quickly.
Hamish Macdonald: Like I think the first conversation we ever had, I sat in a car with you and interviewed you, and you just lost your driver's licence, and you started crying.
Jim Rogers: Yeah, it was just so horrific. I just thought it was all over, and so organically, somehow, I got paired with you on this journey. And it's been.
Hamish Macdonald: I'm so sorry. [Audience laughs].
Jim Rogers : It's been one hell of a ride, and and I think cognitively, it's kept me forward-thinking, planning, having to pull myself together. You know, to put my best self forward. Even though sometimes I can appear like the swan, but the the flippers are going really fast underwater. So I think for me personally, socialisation is huge, and it's really it's changed my life completely. I can't believe all this. I'm now at the Opera House doing this. It's a joke. [Audience laughs].
Hamish Macdonald: But okay, so the anecdotal side of it. But does that stack up from your point of view?
Anita Goh: Absolutely. So there's lots of evidence that says social isolation is really terrible for society, but also for the person living with dementia, because that neural stimulation that people get is really important. So you know that thing where you hear about use it or lose it, really important for everyone, but also people living with cognitive impairment. So all those things that people do, like exercise and you know randomly writing books [Jim and audience laugh], which will be on the bestseller list, really is about. I mean, wouldn't society be really boring if we were all the same? So all these things that we're doing, keeping people, keeping people included, keeping people living with dementia included, keeping carers included, and making sure they're, you know, part of the story as well is good for kind of living well with dementia, but also that societal aspect of living well with all sorts of people in our society.
Hamish Macdonald: Well, before you meet our next guest, we've got a really special performance on this episode of Hold the Moment Live. It's from Australian rock royalty. I'm delighted to say you might know him as the front man of Hunters and Collectors. His solo work has captivated audiences for decades as well. Mark Seymour is actually a fellow ambassador for Dementia Australia, which officially makes him a decent person. [Audience laughs]. He's here to perform a song that holds a really special place in his heart. It's actually written in honour of his mother, which means listen to the lyrics. His mum lived with dementia. It's a portrait of a lifetime of memories of Mark's mum. So, would you like to do the honours?
Jim Rogers: Yeah. So, performing 'Classrooms and Kitchens', if you'd all like to put your hands together to welcome the amazing Mark Seymour. [Audience cheers, Mark enters the stage, lighting dim, Mark picks up an acoustic guitar and enters the spotlight].
Mark Seymour : So it's called 'Classrooms and Kitchens' and it bookends my earliest memory of my mother and song of the last in about three and a half minutes.
Mark Seymour: Classrooms and kitchens small country houses.
Blue hills on the radio, she stoked the fire.
She weaved and she sewed the river broke
And it flooded down the road.
Cattle in the garden, snakes in the grass.
Fog in the morning rising at last.
Oh the dust never settled
The willows weep and the windows rattle.
Well she sits by the window in a blue rubber chair.
They’ve wiped her lips they’ve tied back her hair.
Come on lay down, lay down, lay down your long goodbye.
Here comes the thunder, here comes the rain.
Danny boy’s calling her she’s singing again
Oh her grey eyes keep glowing through the tears and the pain
Oh her petty coat’s showing
But her hands start shaking when the old man comes around
The rain outside is soaking the ground.
Come on lay down, lay down, lay down your long goodbye.
She’s leaving, she’s leaving.
It’s too late to wonder why.
She’s searching for traces, blinks in the light.
It’s in their faces in the dead of the night, when they crawled into her bed.
She remembers what her children once said.
Singing Hail Mary all over again.
She’s counting angels from zero to ten.
Come on lay down, lay down, lay down your long goodbye.
She’s leaving, she’s leaving, it’s too late to wonder why.
Come on lay down, lay down, ay down your long goodbye. Goodbye
Come on, lay down, lay down, lay down your long goodbye, goodbye, Goodbye. Ah,
[Audience cheers].
Jim Rogers: That was an amazing performance. Thank you so much, and on behalf of everyone, thanks again to Mark Seymour. I think you'll all agree [applause] that was an amazing. I know, I know that song is very special to you, and can you take us back to the beginning? What it was about that kitchen that that said about that song?
Mark Seymour: Well, I couldn't have conceived of that memory, that memory never would never have struck me apart if I hadn't paid those really regular visits to the little room she was living in in her last few years, on trips from the airport to where I lived down on the coast. And I just something occurred to me at that time in my life where I realised this was just an incredibly valuable time to be spending, spent with my mother, in silence without anyone else yelling or screaming or singing or doing anything else. You know, it was just a very peaceful time of great solitude. And I got very close to her, just sitting there next to the bed, holding her hand for a long, long time. And that image of the she used to cook, we used to collect blackberries in the bush around the house in Corryong, up in the Alps, and I remember her. She'd just cook all this blackberry jam. For some reason, that just came into my head.
Jim Rogers: That's so that's such a lovely memory to have. I mean, you're a very creative artist. What was it that was about this this whole story that you wanted to create a song, you know, as a tribute to her.
Mark Seymour: Well, I wanted to demonstrate respect, actually. There was an underlying thought that I had that, well, to begin with, it was a structural issue that I wanted to try and describe someone's life in three and a half minutes. So there was sort of a technical challenge involved. But I think the respect is really a big deal for me, and and and you certainly become more aware of it as you get older yourself. Yeah, and and you know there were there were many lost opportunities with being close to mum. You know, when I left home and I rebelled really heavily and got into rock and roll, and you know, and you know, then I found out in subsequent years that she actually kept a scrapbook. You know, and yeah, and I just thought, well, it's just pretty, pretty special.
Jim Rogers: That must have been pretty special when you realised how proud she was of you when you you looked through that scrapbook. You know, I mean, this song is quite iconic with its connection to to dementia. What sort of conversations do you think it has hopefully started amongst people?
Mark Seymour: Well, I just think that I think dementia is it ought to be normalised. You know, it should just be part of our culture, really. And the problem we had was that we didn't prepare for it. I mean, Dad was so stoic and refused to kind of allow anyone in. I mean, I mean, because he loved her deeply, you know. But but we weren't prepared, and I think that's the I think one common thread in the the the crisis that it presents to the community generally is that people don't plan for it. Yeah. So there's this incredible rush to kind of organise things really quickly, and then suddenly you've got these clash of siblings, and you know issues come to the surface and and everybody clamours around the the the patient, you know, prodding them and getting them to try and react in a certain way, and it just all becomes really ridiculous and strange, and then eventually it does settle down, which you know. But I think the preparation is ideally, I mean, if we if we had to go through it again, just prepare months out so that there's a plan there and ready for it.
Jim Rogers: You know, I think. Well, I think that song really does resonate with people, especially anybody that's touched by dementia. And I think all of you will agree that it. Something pretty special. I've heard that song before, but it means a lot more to me hearing it live today. So, thanks everybody to Mark Seymour.
[A pre-recorded self-filmed video from film and television direct Gracie Otto plays].
Gracie Otto: Time to talk about dementia. I know for a fact, having gone through it personally with my father, it's an incredibly debilitating disease for not only the person suffering from the disease, but from the friends and family. And it's a conversation that matters because these are people we love and care about, and these are real people who deserve to live full and happy lives. And you know, the more and more we continue to grow and get older, and will it just means that there's going to be more and more people suffering from this disease, and the more money and support we can get to get better research and to get you know help for those needed to you know continue for them to live a full life. I am fully in support of.
[A pre-recorded self-filmed video from chef and speaker Alvin Quah].
Alvin Quah: Hi, I'm Alvin. My mum taught me to cook, not from recipes, just watching, feeling, and knowing when something's right. She taught me most things that way: patience, care, how to show love without saying it. She has dementia now, and while her memory can no longer hold on to our conversations, ours can, we can remember. We can keep talking, keep learning, and keep making sure that no family will have to go through this alone. That's why this conversation is so important. It sticks, it spreads, it helps. This Dementia Action Week, talk about dementia and help make sure people know support is available.
[The live show continues as the panellists are seated on stage].
Hamish Macdonald: Well, our next guest is proof that living with dementia, you can be seen, valued, and included. You may have seen her on ABC television series The Piano. I haven't. I can't watch it because it makes me cry so much every time. Maybe you've also crossed paths with her out on the running trails of regional Victoria. I thought she was 81, but she corrected me before and said, "No, it's 82. Make sure you get that right." She's just completed her 12th marathon. She's living with dementia, and she has a starring role in Hold the Moment Season One. She's an active mentor of Dementia Australia's peer counselling program, which is a role that means that you can ring up, you can get connected with a peer counsellor if you've received a diagnosis. It's a really important part of what of the services that Dementia Australia offers. Would you please give a very warm welcome to Heather Cooper?
[Dementia Advocate Heather enters on stage, other guests stand to greet her].
Heather Cooper: Jim. Mum died 40 years ago. But she's not gone. No, she's there in little Ava, she's there. In little Ingrid, she's still here, for always,
Jessica Redmayne: When I was performing in Perth just recently, I would put my bag on the armchair in my dressing room. I stopped doing that. I started taking my bag off and putting it next to the chair. Because Mum said, "Put it under the table, you naughty girl!" No, she said, "Take it off, I'm sitting there!" Truly, it's true. I'd take it off so that she could sit in my chair in my dressing room. Yes.
Heather Cooper: So we have these wonderful things called memories, and they're here [gestures to her heart]. They're here.
[Audience applauds].
Heather Cooper: Now I'm sorry to tell you there will be activity. Your Australian government has said you're all sitting longer than you're standing.
Hamish Macdonald: Yeah.
Heather Cooper : We tell you to get 7000 steps minimum every day, two hours of solid exercise twice a week, and I mean solid. And now we're going to have some exercise.
Hamish Macdonald: Okay, thank you very much. So the understanding you're able to, you can stand up, you can do this sitting down.
[Audience stands as Heather mimics the gestures to follow].
Heather Cooper: Now we've got to get that poor backbone beautifully stretched. So, this is your fence. [Heather holds her hand horizontally in front of her face]. Put your fence up. Come on.
Hamish Macdonald: Okay, so we're looking over the fence. Okay.
Heather Cooper: Now come on. We're going to look over the fence. [Heather gestures for the audience to rise onto their toes]. Come on, up, up. Come on, up you go right over the fence. Now peer over there. Oh, the neighbour's brush cutting, whipper snipping. The neighbours whipper snipping without a shirt? [Laughter]. Wait a minute! The neighbours whipper snipping without pants? [Laughter].
Jim Rogers: Hamish is really stretching. [Audience laughs].
Heather Cooper: I think we better rest for a moment. Okay, let's put our fence up again now. Just check. Yeah, no shirt, no pants. What do you reckon about the feet? Come on. Oh, oh, come on, come on, up on your toes, up on your toes. You're going to do right on your toes, no thongs. Okay, relax, but don't flop. Just controlled relax. Okay, hang on to someone if you need to.
Heather Cooper: Lift up one of your legs. Try my best at the knee and wind it round about 20 times.
Hamish Macdonald: I'm conscious that for people listening to the podcast, very weird. [Laughter]. We're all standing up with one leg in the air, and we're twisting it around. And Heather's leading by example.
Jim Rogers: Jess is doing it in heels. [Laughter].
Heather Cooper: Don't flop it down. Put it down controllably. Okay. Most of good exercise is in that slow, steady control. And you're only as fit, not as anybody else, but as fit as fitter than you were the last time you did something. Energy is not a complete bottle that you use. Energy is like a good dairy farmer. Every morning, every night, he milks jersey cow. Now she can give 10 litres of milk a week, a day. I don't know a day. But if she's yeah, I think it's week. If he's properly milked for about six weeks, she can do 60 litres every morning, every night. If he's away, then he gets someone in to milk her. Exercise is the same. Once you've used all that energy, the next day you've got a little bit more. Please. Okay. Let's do the other foot. [Laughter]. Up she goes round.
Hamish Macdonald: Okay.
Heather Cooper: About 20 times and round again.
Hamish Macdonald: So Heather, is the moral to this story that we're all Jersey cows waiting to be milked? [Laughter].
Heather Cooper: Energy, Hamish, is endless.
Heather Cooper: There is no limit to the energy you can have.
Jim Rogers: You are living proof of that, Heather. The only person I would never forget interviewing is you, because your energy is insatiable.
Heather Cooper: Now, worry. Oh, you can sit down carefully, controlledly, no flopping.
Hamish Macdonald: Please thank Heather for the exercises. [Applause as the guests and audience sits down]. That was great. Why do you do the exercises? How does it help?
Heather Cooper: Because your brain clarity. You need all that blood rushing round, having a good old scrub up there, and all all your energy and your fingers and your feet, and you feel your body, and you just feel so controlled, don't you? You feel in charge. Yeah, you own it. It's all mine.
Jim Rogers: And you certainly can't do energy-related things and not feel good about it afterwards. Is that something that you get, Heather, when you do your exercise?
Heather Cooper: When I feel that I have that power to do for me what I, you know, can do, it's stunning, isn't it? Aren't we beautifully made?
Hamish Macdonald: So Anita, how important is exercise if you're living with dementia? Like, balance is a thing. I know. I know. Jim started swimming, going to see a gym trainer soon after his diagnosis. How critical is it to keep active?
Anita Goh: It's really important. So, I think you know we talk a lot as researchers and clinicians, about evidence and what evidence is good for people, and one of the strongest evidence that we have is for physical activity and exercise. So it's really important for your physical body, of course. You know your muscles, the blood that rushes to your brain, and all the infusion of the hormones that we have in our brain in the blood, really important, but also important emotionally. I don't know, you know, some people get these post-exercise endorphins, which helps with mood. I personally don't, but I'm sure Heather does. I think I can feel them coming off her now. So it's really good for mood, and it's also, as we said before, really important for social connections. So when you go to the gym, you're connecting with other people. You know, when you're doing your line dancing, you're connecting with a whole bunch of other people. And whatever sport you choose, for the most part, there's probably other humans involved. So I think it's one of those things that really has multiple benefits going for it.
Hamish Macdonald: So Heather, what happens for you when you're running? Like I want to hear about the 12th marathon soon.
Jim Rogers: Round of applause for the 12th marathon.
Heather Cooper: Well, I start off down the road, and I think this is a bloody stupid thing to do, and I'm really annoyed with it, and it's never going to be successful, and I really just dislike it very much, and by the time I've got to the bridge, I'm thinking, oh, it might rain. By the time I've got to the top of the next hill, I got to the top of that hill, and I didn't even notice I was getting to the top of that hill. And by the time I've gone a few k, I'm in, I own the world, you know. I'm here. I did this. Yeah, this is me.
Hamish Macdonald: And do you notice a difference afterwards? Like, do you feel better because you've done it?
Heather Cooper: I think we've had medical evidence to the fact that the endorphins are going high and strong. And let's face it, that is how the jersey cow did too. She had all her, you know, energy gone, and she made some more, and then she made some more. Yeah.
Anita Goh: And I think that's something. Picking up on something, Heather, you remind me of, is that choice of agency and choice, and kind of what you want to do, and you feeling empowered to do something that you really enjoy. And I think that's a that's really important as well. Like, marathon running is probably not for everyone, but it's really important for Heather. But that, you know, I have dementia, but I made a choice to do something. I I love it, and being able and supported to do that.
Hamish Macdonald: Heather, I'm wondering if you have had to negotiate things like the running with family or with friends. You know, there's a stigma attached to dementia, right? People might assume Heather's got dementia; she can't do a long distance run. Have you had to make the case to people?
Heather Cooper: No.
Hamish Macdonald: They've just accepted it.
Heather Cooper : Well, That's our mother. She's pretty stupid. We've got five sons, and they're rock climbers, footballers, cricketers, everything. Basketball. One of them's a very high-powered in a very high-powered motorcycle company.
Hamish Macdonald: Right.
Heather Cooper: He rides his push bike to work. Yeah, so they understand. You've got to live in your body and use your body, and just because mum's brain's a bit scrambled doesn't mean she can't look after herself very well.
Jim Rogers: You love to ride your push bike, don't you? Because I know you've turned up very sweaty to do podcasts before now, [audience laughs] just jumping off your bike. Yes, but have you ever thought of a marathon?
Hamish Macdonald: Ah, not recently, no.
Jim Rogers: Have you run a marathon?
Hamish Macdonald: A long time ago, but I see, I feel like I'm too old.
Jim Rogers: No. Maybe we should get behind pay mission sponsor him to do one. [Audience cheers].
Heather Cooper: And and what is it with age? Because yesterday I went to King's Cross Station, and I looked round to ask somebody which platform. Because it's just got the two rows of stations. See, not helpful to to know what to do. Platform one or platform two, and lists of of names that I don't know. I'm I'm from Central Victoria. And so I stopped somebody who looked like they wouldn't be ageist. [Laughter].
Anita Goh: Yep.
Heather Cooper: And I said, you know, asked the question, and she said, oh, that's the one. Get off there. I go to platform well enough. I wasn't happy, and I didn't have to say to her, but I would have. I've got dementia. Can you help me? I have never been put down for that. I've been put down for my running. I was this morning by a group of women having breakfast. When I come there with my boiled egg and my whatever, to I clean the op shop on a Friday, and I also I'm probably one of the only 82 year olds who's has got a paid cleaning job. [Audience laughs].
Anita Goh: Busy human.
Hamish Macdonald: I'll get your number. [Audience laughs]. The theme of this year's Dementia Action Week is that it's time to talk about dementia. Having conversations, as we we've been hearing, really does make a difference. So we're going to take some questions from our wonderful Hold the Moment audience, and I've got to say to those of you listening on the podcast, it's been incredible to see this community grow over the last few years, and we're really excited to see where that goes in the future. But let's kick things off. One of our ambassadors, Adrienne Francis, is here, and Adrienne's got a question for you, Jess. Here you go.
[Adrienne Francis, Dementia Australia Ambassador and journalist, steps up to a microphone in the audience to ask the panel a question].
Adrienne Francis: Jess, I'm caring for my mum right now, and some days I really do feel like I'm getting it all wrong. So, looking back at your years caring for your beautiful mum, is there anything you'd go back and tell yourself? Something you? Tell yourself not to worry about or do differently.
Jessica Redmayne: First of all, you're not getting it wrong. Whatever you're doing, you're not getting it wrong. I wouldn't tell myself to stop worrying because I'm really glad that I worried. I'm really glad that I because I did everything I possibly could in that moment to not only spend time with her, but to do everything I could to give her a better quality of life, and I'm glad that I worried and stressed about it because it was necessary at the time. So whatever it is that you are doing, I'm sure it is enough. I'd probably give her more vegetables. [Laughter] And be a little more patient. [Audience applauds].
Hamish Macdonald: And we've got another question from Grahame Crowfield, and this one is for Dr. Anita.
[Dementia Advocate Grahame Crowfield approaches the microphone].
Grahame Crowfield: It is Professor Anita, indeed. I think, as one of your favourite animals, [audience laughs] I've got a question for you. We talk a lot about how family and friends, and we have talked a lot about how our family and friends can best help us with dementia. But from your work, what's the one thing that you wish workplaces got right, and what sort of good support, what would that look like?
Anita Goh: Good question. Big question. So for dementia, I think as something that affects so many Australians, it doesn't just affect the person living with dementia; it affects their families as well. So I think when we say, you know when you get it right for people living with dementia, you get it right for everyone. That is really applicable for the workplace as well. So having that conversation with someone experiencing cognitive impairment and being okay with that, and having conversations about what work might look like for someone living with dementia is important. And dementia, as I said before, is a progressive illness as well. It's not like someone gets a diagnosis and then can't do anything anymore. It happens slowly over many years or quickly, depending on the human, and it can affect many different cognitive domains. So having that conversation openly, frequently is really important, and putting in whatever workplace accommodations that is suitable for the work, I think, is important, and just being open. And then there's the say the family carer or the family members as well who might be looking after our caring and having that very busy job of holding down a paid role, but then also the unpaid role. And to be fair, they're really holding up the care economy sometimes. The amount of care that unpaid carers do as family members keeps people at home for longer and keeps the health system up and standing, to be honest. So having accommodations for people and family leave and carer leave is really important, and the emotional support and practical support as well. And then there's also the environmental design of your workplace as well, which I think is important. And people just getting it right for disability access, including the disability access for people with cognitive impairment.
Hamish Macdonald: Great answer. [Audience applauds]. Well, we've got a question now for Heather Cooper, and this comes from Angus Peruzzo. Angus, what's your question?
[Angus Peruzzo, Dementia Advocate approaches the microphone].
Angus Peruzzo: Hi, Heather. You talk about acceptance being the turning point for you, for someone in the audience who's just being diagnosed and still in the dark place with the disease described. What would you say to them right now?
Heather Cooper: I would say to them, when you can bear it, you need to acknowledge your disability. People can't see like a big white cane or a wheelchair, they can't see your disability. You need to acknowledge it for yourself and then share with others that you have a disability, but you're still you, and you're still in control of yourself. And it's your acknowledgement and acceptance of your disability that will give you the courage to go out. [Audience applauds].
Hamish Macdonald: Thanks very much for your question, Angus. Now, Jim, there's a question for you, and just a warning, it comes from Tarsh Belling. [Natarsha and audience laughs]. And I've worked with her for many years, and I would just say, watch out, not to be trusted.
[Natarsha Belling, journalist and Dementia Australia Ambassador stands at the microphone].
Natarsha Belling: Allegedly. Can I just say thank you so much to Dementia Australia, firstly, for this fabulous platform, to you, Hamish and Jim, providing a platform and a voice for so many people living with dementia. Especially in regional areas where people living with dementia and their families feel so alone, and you are actually making a huge difference to so many lives. My question to you is to you, Jim, and your story, as I said, touched so many lives. We can't wait to read your book, which will help so many others. What's something that you've learnt with the podcast with Hamish that's changed your life day to day.
Jim Rogers: Everyone has their own version of what happens. Even listening to Jess today talking about her experience with her mom. Everybody's is so different, and we've met some so many terrific guests, and it never, it never surprises me what I'm going to find out that there's so many different avenues, and it's so unique. And dementia is a cruel and greedy beast. It sneaks a little nibble at the beginning until it's very hungry, and it takes more and more from you. And it's just pot luck as to when does it happen to you. But it's been a truly incredible experience, and I feel very privileged that I've got to to speak to all of these people and hear their story. And and you know I'm looking forward to the fourth season and doing it again. I can't believe we're going to be doing this again. So yeah, that would be my answer. Thank you, Tarsh. [Audience applauds].
Hamish Macdonald: Thank you for the wonderful questions. If there's one thing that you do talk about this Dementia Action Week, it is have a conversation. That's all we're asking you to do. It's pretty straightforward. You can also let people know, though, that Dementia Australia is always available if you want someone to talk to, whether it's you with the diagnosis or someone that you know. The National Dementia Helpline is open 24 hours a day, seven days a week. It is staffed solely by Jim, [audience laughs], so you just call up. He's there.
Jim Rogers: You wonder why I'm going grey.
Hamish Macdonald: Sometimes they let him go to the bathroom, but it's but it's a fantastic service. No, seriously, there's an incredible collection of people there, real expertise. I've recommended it to so many family and friends, and so do share that number, do share the website. It is absolutely worth doing.
Jim Rogers: Anyway, I think as you'll all agree, we've had a great discussion here about dementia, and before we go, we'd like to ask, I guess, one quick last question. So I'll start off with you, Jess. It's time to talk about dementia, obviously, that's the theme of today. What's the one thing you want people to talk about?
Jessica Redmayne: Dementia is not an elderly disease. It can affect anyone, and I think it's time to start talking about the fact that it can affect anyone at any point in their life.
Hamish Macdonald: animals to talk about? [Laughs]
Anita Goh: I want to tell everyone that silence creates stigma, and nobody wants that. And conversations create understanding. So ask for support, and there is support available. And just have those conversations as often as you can, and that there are no scary questions if you verbalise them.
Hamish Macdonald: And Heather, what would you like the beautiful jersey cows of our audience to talk about this Dementia Action Week?
Heather Cooper: Brain health is the new horizon. [Audience applauds].
Jim Rogers: Oh, that's a beauty! Well, as you know by now, it's absolutely time that we all talked about dementia, and we all hope you'll continue to have this conversation within your own lives.
Hamish Macdonald: Yeah, and if you're here today, if you're listening on the podcast feed, please recommend the back catalogue to your friends, to your family. There's episodes there on all sorts of issues, everything that touches the life of someone who's got an experience with dementia. You can find an episode there. There's all of the helpline episodes as well, and we'd really appreciate it if, as part of this, you get the word out. There's been an incredible community that's grown and sort of blossomed out of this podcast. I don't think I certainly didn't expect that going into this. I don't think the producers or Dementia Australia had any concept going into this what was going to come of it. You know, a bunch of years ago they said to me, would you make this thing? I think we thought a few people to listen. It'd be nice experiment, but what we found is that it's really sort of tapped a rich vein, a need that's there in in Australian society. Because the reality is, we all know someone touched by dementia, and everyone has questions. Everyone feels a bit alone. And this conversation that we've been having now for three seasons, going into a fourth, I think it's just created a space for that. So thank you for being part of that. Every one of you that's here today has played an important part in that. You guys as well. So thank you very much. We need to thank a few people, by the way. Hold the Moment Live is presented by Dementia Australia. Thanks to the federal government for supporting this. We know this is really important. So to the ministers listening, the ministers that are here, the people involved, keep the money coming, please. Our thanks also to the Sydney Opera House technical team and to the Sydney Opera House generally. They've been a great supporter of us all along. To our production team, Deadset Studios, they are Deadset legends. Please say thank you to them and to the wonderful staff at Dementia Australia, a big round of applause. [Applause]. If you'd like to learn more about dementia, get involved as an advocate or pledge your support, please visit the website dementia.org.au, and don't forget, of course, you can find Hold the Moment anywhere you get your podcast, Spotify, Apple, all the rest of it. And there's also now a Dementia Australia YouTube page where you can watch Jim talking as well as listening to him. [Audience laughs].
Jim Rogers : He's so kind. So on that note, we'd like to put an end to today and say thank you to everyone for being a part of this, and thank you to everyone for taking part in Dementia Action Week. So, here's to that.
[Audience cheers, theme music plays].
[End titles play, ‘Hold the Moment’, Dementia Action Week, Dementia Australia logo].
[END OF RECORDED MATERIAL]
About the episode
It’s time to talk about dementia... at the Sydney Opera House. Jim Rogers and Hamish Macdonald welcome a panel of special guests and a live audience to talk in-depth about dementia.
Actor Jessica Redmayne, researcher Associate Professor Anita Goh, and Dementia Advocate Heather Cooper share their unique perspectives. And Mark Seymour, Hunters & Collectors front man and Dementia Australia Ambassador plays his song, ‘Classrooms and Kitchens.’
Resources and support
Within the Dementia Australia Library the following topic guides are relevant to this episode and may be useful:
National Dementia Helpline 1800 100 500. You can call 24 hours a day, or request a callback, start a webchat, or send an email with whatever is on your mind.
Dementia information and education sessions
Online and in-person sessions from Dementia Australia that build understanding of dementia and provide practical strategies for support and care.
An Australian Government program providing counselling, respite and practical support for carers.
It’s time to talk about dementia
Almost half a million Australians are living with dementia today and over 1.7 million people are involved in their care.
But we don’t talk about it enough, It can feel too hard to raise. We worry about saying the wrong thing. And it’s often wrongly seen as just a part of getting older.
But silence has a cost - delayed diagnoses and treatment, carers who feel isolated, and people who never learn that help is here.
When we talk about dementia, we can:
- Improve support and services for Australians
- Improve understanding of dementia
- Reduce stigma and discrimination
About the podcast
Hold the Moment is an award-winning podcast from Dementia Australia full of real stories about life after a dementia diagnosis.
Season three dives into the topics that can be hardest to talk about, with compassion, practicality and a unique sense of hope.
Subscribe to the podcast
You can subscribe to the Hold the Moment Podcast on your favourite platforms, including:
Apple PodcastSubscribe to Hold the Moment on Apple Podcasts.
https://podcasts.apple.com/au/podcast/hold-the-moment/id1761945729
SpotifySubscribe to Hold the Moment on Spotify.
https://open.spotify.com/show/2flVINrLfqr23P3V6XwBLS
YouTubeSubscribe to Hold the Moment on YouTube.
https://www.youtube.com/playlist?list=PLAwhBH-4GO5jz9QVtKcOwCWZs6i39o5Ya
The National Dementia Helpline
Free and confidential, the National Dementia Helpline, 1800 100 500, provides expert information, advice and support, 24 hours a day, seven days a week, 365 days a year. No issue too big, no question too small.