Community Support
Building Powerful Social Connections
Transcript
[BEGINNING OF RECORDED MATERIAL]
Kevyn: Hello, my name is Kevyn. I am a First Nations advocate with Dementia Australia. For more than 50,000 years, we have come together to trade knowledge, to learn, and to teach. Today, we joined to keep up that tradition. So, with that in mind, we now pay our respects to the Traditional Owners, to Elders past and present, to those First Nations people joining us here today.
[MUSIC]
[BEACH BACKGROUND]
David: Morning.
Person at beach: Morning, how are you?
David: I'm fine, thanks. How are you?
Person at beach: Yeah, well thanks, getting out bright and early.
Jim: We're down on a beach in Wollongong with David. He's a local here and he's living with Alzheimer's. And he's got his camera out waiting for the perfect sunrise shot. He does this most mornings after his swim, and it's become part of how he stays connected to his local community.
David: - And who's this little fellow?
Person at beach: This is Frankie.
David: Oh, Frankie, how old's Frankie?
Person at beach: Frankie's just turned two.
David: Ah, and what, what, when's he born? What's the date of his birth?
Person at beach: 3rd January, 2024.
David: Oh, I'm, I might have a photo of that date of the sunrise, because that's what I normally do is if I get an opportunity in the morning, I get down and take a photo of the sunrise. Even if it's not here, if I'm away somewhere. So, what was the date again?
Person at beach: So that's sort of special. It was the 3rd January, 2024.
David: I have to go back in...
Person at beach: I was in hospital, I didn't see the sunrise that morning.
David: Okay. Yes, I have one. This was taken down at North Beach, um, how's that?
Person at beach: Oh, that's gorgeous.
David: Fabulous, isn't it?
Person at beach: Wow, it's a stunning morning there.
David: Its lovely, gold and the clouds...
Person at beach: It's a real golden.
David: Yeah, and the clouds really make it. Okay, what's your phone number and I'll... - (Yeah.)
[MUSIC]
Hamish: For a lot of people, after a dementia diagnosis, you actually pull back. You don't always tell people because you're not sure how it'll change things. Where you'll fit in or how people will treat you.
Jim: And trust me, that can be so isolating, Hame. But what if instead of withdrawing, you take the lead in your own way? Well, that's exactly what both of our guests have done.
[Music]
Jim: Welcome to Hold the Moment. A podcast from Dementia Australia. These are real stories from people living with dementia and with the people who care for them.
Hamish: I'm Hamish Macdonald. I cared for my dad who was living with Parkinson's and Lewy body dementia.
Jim: Hi Hame, and I'm Jim Rogers and I'm living with Young onset Alzheimer's.
Hamish:- Can I just pull you up there, Jim? Did you just say Young onset Alzheimer's?
Jim: I did, I said Young onset.
Hamish: Don't we normally say Younger onset Alzheimer's?
Jim: Yeah, we do say younger originally, but now Dementia Australia have changed it.
Hamish: So, they've changed their language?
Jim: This happened in the middle of making this season of the podcast, actually. So, if you're hearing us both saying young or younger, that is why. People can be sensitive about labels, right?
Jim: Yeah.
Hamish: And I guess this is a label that you've been using now for a couple of years.
Jim: It is, and I think people, sometimes when it's younger onset, it sounds as though somebody's getting to the older years, but they're still a bit younger than that. This makes it very clear. It's 'Young onset.' Some people, like, some of the guests that we've been interviewing, as young as 46, are dealing with Young onset Alzheimer's. So it just makes it clear.
Hamish: - So henceforth you'd like to be known as young.
Jim: - I definitely would be pre-preferable to be known as young, and that's for sure.
Hamish: So, young onset Jim!
Jim: Go with the young, Haim.
Hamish: Staying connected obviously really matters. Not just for people living with dementia, but for the people around them too. When those connections diminish, everyone feels it.
Jim: And that's why I wanted to talk to somebody who's held those connections and even built creative new ones. So, I sat down with David, he's 74, and was diagnosed with Alzheimer's in 2023. And he's been a lifelong community builder in his professional and personal life. So, after his diagnosis, he asked himself, "How can this become a new way to help people connect?"
[Music]
Jim: Welcome to Hold the Moment, David. It's so nice to have you. So, thanks for making the time to come and see us today.
David: Yeah, it's a pleasure. Thanks very much.
Jim: You spent most of your professional life building communities. Tell us a little bit about your work as part of 'Jobs Gym?'
David: The Jobs Gym is something that a, a friend of mine and myself have been working on. It's built along the lines of a gym. If you go to a gym, you've got to do the exercises. You can't spend your time just looking at the girls and what have you. You've got to do the exercises to meet a particular goal. Well, this John-Jobs Gym concept is exactly the same thing. We work with, mainly student that are disengaged, that don't know what they're able to do or, or what they think they can do. So, we've developed about 70 separate exercises. About their whole mindset, about their dress, about their relationships, and thinking about jobs in particular. They, there's the, the normal set of jobs, you know, "What do you want to do when you leave school?” "Oh, I can be a carpenter or I can be a sparky, or I can be a boiler maker." But there are a whole range of opportunities that they've never really thought about.
Jim: So, you spent a lot of time in your career helping people and, and doing all of this sort of thing. When did you start to notice anything about yourself that led to your diagnosis with Alzheimer's?
David: It, it probably followed a particular heart operation that I had. I had my, my aortic valve replaced. And, there what we thought were some, a few little blood clots, were appearing. I've started to lose sight in one of my eyes. And that further investigation and tests and what have you. Finally got the, got the results that I had Alzheimer's.
Jim: - And were you finding you were forgetful or what were the things that stood out to you that sort of...
David: Mm… Probably more forgetful than I always, normally were. (-Yeah). But yeah, things like that. Not being able to remember someone's name. (-Yeah) Particularly someone that I've known well and been involved with. That's, the sort of thought pattern, you know, of, you know, getting things in the systems and, and ideas.
Jim: It's hard to pinpoint, isn't it, exactly what it is? I mean, even myself, like I, I resonate with what you're saying. Even now, coming here, like, I lost my bag at the airport, (-Yeah). or I keep losing stuff, forgetting things, and it's like it 'drops out.'
David: Yeah. "Have you seen my phone?"
Jim: Yes, it's probably next to mine somewhere!
David: No, it's, that's, that's one of the issues. You know, I'll start putting things down, forgetting where they are. (-Yeah). Walking out the door, coming back in. My wife says, "You're back again." "Yes." "You're back again." (-Yeah). And, and now it's, "Have you got everything?" "Your glasses? (-Wallet) Your car keys?" (-Yeah).
Jim: And when I was doing some research about you, you're this crazy early morning swimmer that gets up and goes in the ocean. Is it half past four in the morning?
David: Yes, it's half past four.
Jim: Tell me about that.
David: It's just something that I've been doing for some time. We swim in a local rock pool in Wollongong. I, I usually get there at 4:30 in the morning, because it's always good, I can get as many parking spots as you like, there's no one around. But, it's just a, a great opportunity just to do something really different that really enthuses you. It wakes you up, it gets you involved. And there's about four, maybe five other guys arrive at about by five o'clock. And then that just builds a momentum. They, they're out by 5:30 or six o'clock. And then there are other people coming into the rock pool. But it's just nice to be there as the, the first one.
Jim: And did you sort of put this together with these guys and sort of create this community where you all...
David: They've been doing it for years.
Jim: So, you sort of slid into it?
David: Yeah, I slid into it.
Jim: And joined in?
David: Yeah, joined in, but that, they have, they've been doing it for years.
Jim: And what happens with the photography side of things? I heard you were doing some photography that, that was happening. Tell us about that.
David: I take photos of sunrises, and it, it's, it just something that I've been doing for quite some time, because living near the beach, you'll get up in the morning and "Oh, there's a great sunrise and 'click,' 'click,' 'click.' And get all these shots of it. And I, I've got hundreds of them, hundreds of them. And I love giving them away for people. If I see someone with a, with a young child and I ask the obvious question, you know, "When is your daughter born?" And they say, "Oh, she was born on such and such a day." "Oh, I might have a photo of the sunrise," and flick through the camera, and just say, "Would you like it and share it with people?" "This is the sunrise of the first day of your life and the date."
Jim: That's pretty special. Did you ever think that your diagnosis would lead to building this sort of community that you're trying to create?
David: It's something that I've always done. You know, getting involved with service clubs, charities, all those sorts of things. Just things that I like to do. We had a, we had a, um, an annual event, called the 'Shrivellers Dip'. And I don't... (Laughter)... again, it's like swimming during winter.
Jim: Yes, I'm getting that.
David: Oh, you're getting that. And, um...
Jim: I was going to ask you, "How on earth do you get in, in winter?" "Is it cold? Is it really cold?"
David: Oh yeah, it's cold, but...
Jim: But it's invigorating once you're actually in
David: Oh it is, yeah, yeah.But the Shrivellers Dip was through our friends at Apex, the service organisation. And we set the date, which was the first Sunday in July, middle of winter. And we met at North Wollongong Beach. And you had to have a dip, but you could only wear your cossies. There was no wetsuits, no goggles, no head gear. (-Cold stuff) Hmm. And that really took off this river step, become quite well known. And we, we ran that for a couple of years and made some fundraising activities out of it, and the like. There, there's always opportunities to do things with, you know, with an idea. - (Yeah.)
Jim: You also run a guy's group where you get together. Tell me a little bit about that?
David: Oh, that's 'secret men's' business.
Jim: That's the one, yeah. I think I remember it because it was to do with red wine. (-Yeah). Tell me a little bit about that.
David: We had, well it all started, I suppose with our, with our families. There were seven or eight couples and we all had children at the same school in Wollongong. And, we started a wine club, the males. And um, we ended up setting up this secret men's business, which had seven members. Two of them have sadly passed away. Now we've got five. But, it's the third Thursday of the month. The, it's bringing along a bottle of red wine in a, in a bag, in a brown paper bag. And we taste it and carry on and what have you. Doing things a little bit differently is what I always like to do. And, I was tending to think, "Oh well, I've got this thing called Alzheimer's and what can we do differently about that?" You know, what can we do to assist people to provide change or whatever it is, you know, that if I've got it, I'd like to do something with it.
Jim: What do you think, for people out there listening who perhaps have been diagnosed, what would your message be to them with regards to reaching out to the community?
David: I'd just say get involved. You know, really let people know that you, that you do have Alzheimer's or that you do have dementia. And you know, get out there and, and work with it. You can make a contribution. You know, you can make a difference.
Jim: So, I suppose really you're saying start small, yeah?
David: Yeah. There's no doubt about that. You know, going swimming every morning, you know, it doesn't have to be every morning, but if it's part of your routine, start with something as small as that. Putting your toe in the water. (- Yeah). Then your ankle and then your leg.
Jim: I love that.
David: Your whole body.
Jim: You're inspiring me now to go and do some more swimming. I'm doing my best. But I, I can't thank you enough for coming in and sharing with us your insight into the journey. And so, thank you so much.
David: It's a pleasure.
[Music)
Hamish: Well, Jim, it's really inspiring hearing how David has taken his diagnosis and, and used it actually as a catalyst for a new way to connect with people that it's beautiful, but it's also, I think a kind of inspiring way to think about this whole thing of being creative, sticking with community and I guess all the things that make life real and give it texture and, and richness.
Jim: That's absolutely right. And the bottom line of it is, neurologists are saying, research is showing that, one of the most powerful things for your cognitive health, is community. Much like one of our guests said, storytelling originated from sitting around the fire and telling those stories and being close to each other. And we have so much screen time and confusion and noise now. So, getting back to that community, being close to people, human stories, it's important, right?
Hamish: And you can, I suppose, build that out by making sure you are undertaking activities that put you in community, put you in the physical space of others and kind of help ferment those connections.
Jim: Definitely, and I think it's something that's really had a big impact on me, my mental health and feeling good, is people actually getting together talking. And I dunno if you noticed, but I do like talking. So, it's been great.
Hamish: I hadn't, I hadn't noticed it.
[Laughter)
Hamish: I'm interested in the other side of this, as well. What happens when you're the one that's doing the caring? You know, your life changes, your responsibilities change, obviously your network can change as well. And I know from my point of view, that was really tough. Cause, not necessarily all your friends are caring for someone living with dementia, they're just wanting to meet for a run or a swim or go to the pub or plan for lunch. And you've got these other kind of priorities going on, and I think that, it sort of, it loses connection and, and then you find yourself being the one in the corner that's talking about caring for someone in... - (Yeah.) in aged care, and that is, that is not an exciting conversation for most of your friends.
Jim: And you must have found that hard with your dad. Just finding time for yourself and not feeling isolated and, and how to discuss those things.
Hamish: I think I just really found it a very fine balance. Like, I always was very conscious of not being that person that's kind of moaning about this stuff, but then also knowing I kind of need to talk about some of this with my friends.
Jim: Yeah, just to offload. Well, I thought you might be thinking that. So, I've sat down with the most lovely lady, called Amanda, and she cares for her mum.
Hamish: Can you tell me a bit more about her? Like, what's her background? What's her story?
Jim: Well, her story starts so early. Her mum was diagnosed with Lewy body dementia when she was just 17 years of age. And she's been a carer really for most of her adult life.
Hamish: That's a pretty big responsibility for someone so young.
Jim: Yeah, right. The weight of caring left her feeling so isolated and helpless. But then she found something that changed everything. A community of other carers and people who really understood the reality of caring and who she could call on, lean on, and share the burden. And they were willing to step up and help her when she needed it.
Hamish: Sounds like a pretty amazing support network.
[Music]
Jim: The lovely Amanda, thank you so much for coming in. It's a pleasure to meet you.
Amanda: Thank you so much for having me today, Jim.
Jim: First of all, let's go back to that responsibility of care that you started to do when you were only 17. What happened?
Amanda: Well, I was 17 years old, as you've mentioned, in my last year of high school, HSC. Very new to Australia as well. My family had just moved here from Fiji Islands actually. And, I wasn't quite sure what it was, because mum just, you know, she kept forgetting things. And it was like, everyday little things, like, the kettle would boil, and you know, and it was those old kettles that whistled. And I think, well, "Why isn't she picking it up?" And then she'd come rushing in and yelling "Who's left the kettle on?" "But, that was you, right?" And then it was, you know, getting late to be picked up from places and I kept thinking, "Well, what is this?" And we didn't really have a name for it at the time, which made it even harder.
Jim: More mysterious.
Amanda: Absolutely, cause then there was no way of being able to talk about it. And being a 17-year-old, taking mum to the doctors, because she was very stubborn. It was like, "There's nothing wrong with me." Yeah, and so taking her to the doctors, and trying to articulate exactly what was going on and nobody believed.
Jim: God, this would've been a minefield to try (-Absolutely) and work your way through it.
Amanda: Nobody actually believed that there was something wrong with her.They were like, "Oh look, she's what, 47 years old, perimenopause." "It's menopause." And then it was, "Oh no, it's bipolar." and then "It's psychosis." And then she, because of all of those diagnoses, she was medicated. And some of that medication really shuts you down as a person. Like the really strong, heavy ones. (-Yes.) So she was almost in a zombie, comatosed form. So I had to then care for her because she couldn't work.
Jim: I don't even know how you would navigate all of this. So, you had sort of incorrect diagnosis, you had confusion, and the medication. (Yep) And the signs to look out for. (Yep. Yep). How did you work through it?
Amanda: I hid it. I was very embarrassed. Friends would drop off, and I friends, not just my friends, but mum's friends as well because she was a very private person. And our culture, like most ethnic cultures, you don't talk about what happens in the house. You know, things that could potentially bring shame and mental illness is definitely one of those things that you do not speak about. (Yeah.) So, I hid it. Stopped having friends come over, and mum wouldn't answer the phone, because having a friend over meant I'd have to mask any of the strange behaviours. Like if she lost her temper because she's forgot something, I'd quickly, you know, try and hide that. So, how I handled it, was in private.
Jim: That would've been hard for you from an anxiety perspective. You must have been, you know, on eggshells really, a lot of the time.
Amanda: All the time, and it was extremely isolating. Now remember, I'm 17, like all my friends were getting ready for their HSCs, meeting boys, you know, trying to sneak into clubs. (Yeah, yeah). Didn’t get to do a lot of that. Didn't get to do a lot of it, but it was a choice that I had made. And traditionally it's an honour to care for your parent. And the other thing is, we didn't have anybody else. We don't have immediate family in Australia. So, it's literally myself, and my sister at the time, and mum. That's, that's all we had. And my sister went to University in Armidale, so she wasn't at home. So, it was literally, myself.
Jim: This all fell on your shoulders literally.
Amanda: Correct.
Jim: That would've been so hard to handle, also, just leaving her at times when you're trying to do your thing and you've got that responsibility. And you were going through your own struggles at this point, weren't you?
Amanda: Yeah.
Jim: And did you sort of put that on the side?
Amanda: Completely.
Jim: What happened?
Amanda: Um, I got really good at compartmentalising things and locking it up, and kind of, you know, cataloguing it, putting it away and going, "I'll come back to that later." And that was me. And a lot of people that have known me, have always said, "You're so, you, you're such a hard person, Amanda." "Yeah well, I've got no time." (Mm.) I've got no time to be empathetic or to feel or to even just stop, and listen to you, because all of that energy is required here. I've got to stop and navigate what's going on with mum because this is the person, this is my person. Like this is who brought me here on this earth that, you know, single handedly raised three daughters, on her own. And, at the age of 28, where she first experienced her own mental illness. Divorced at 32, I was two years old. Travelled from Southern Africa all the way to England, Fiji and Australia, with three kids. I was like, that is strength beyond,
Jim:- That's enough in itself. There's a book right there.
Amanda: Oh no, I am writing her memoirs. So, but yes, it was just... haven't given me any space to be me.
Jim: And did you, when you finally got to a diagnosis and they changed her medication, did you see improvement there?
Amanda: Um. I thought I'd be relieved when, you know, we had an answer to all the questions I had.
Jim: Must have been a shock.
Amanda: Dementia wasn't something that I even knew about. I didn't even know what it was. I didn't know that it even existed. So hearing somebody, you know, explain to me that, "Look, she's got Lewy's body's dementia, particularly." And I've gone, "Okay, what is that?" And doing my own research on it. (Mm.) And being told what this, you know, the shelf life is of it.
Jim: Scary.
Amanda: Right? I've gone, okay, instead of me feeling like we've got an answer, it drew a line in the sand for me and said, "Okay, now there is an expiry date to every day." So, I'm going to say it got better, because it allowed me to stop and stop searching (Yep.) for a solution. I've gone, "Okay, this is something that is now completely out of my hands." That I've been shown all of the scientific, the medical evidence, the physical evidence that this is definitely what she's got. (Yep.) Um, so, I'm going to let go of trying to find that solution and I'm going to stop and live in the moment and start living.
Jim: What did you do from there? Where did you turn to?
Amanda: So, where I drew my support was firstly my immediate family For them to understand that yes, as much as I'm, you know, they see me as the super strong, you know.
Jim: Independent woman.
Amanda: Resilient, independent. A big part of me is breaking. I'm slowly losing myself and being, drawing from mum's experience going, "Okay, I can't hold it all in, I've got to start talking to people." Is where I sat my husband down and said, okay, I'm disappearing with her memory. And what really scares me is who am I going to be when she's gone? 'cause I've spent most of my adult life caring for her. I don't know what that looks like. And, joining Dementia Australia and becoming an advocate, like each region has an advocate group. (Mm.) So, we'll catch up for lunch. We've got a WhatsApp group. So those days where you feel like absolute hell, somebody will message, and it's just that the constant check-ins. So, we don't necessarily have to see each other every day, but somebody will drop a message or something they saw online and you know, pop it in there. That little community was very helpful
Jim: When I was looking through my research (Yeah) I noticed that your mum, at times, went back to her mother tongue (Yes) and so, tell us a little bit about that. What happened?
Amanda: So she, it's not that she forgot how to speak English, she just preferred to speak in Tonga.
Jim: Okay.
Amanda: Now, I understand it, but I don't speak Tonga, unfortunately.
Jim: Ah, interesting.
Amanda: But I can understand...
Jim: That could be very useful.
Amanda: I can understand, oh, it's very, very useful, um, but with the, with mum's regression, she would go back in time. So, there were times where she thought she was 12. (Oh.) There were times where she was thought she was at university, and don't get me. I loved the university stories, because I got all the juicy.
Jim: Yeah, yeah, I bet.
Amanda: The juicy stories. But, when I'd go, when I, when I put her in a nursing home, because it got to a point where I had to get care for mum. Whenever I went to visit, I made sure I had photos with me. And that would (Trigger.) help me understand where we were on the timeline, so that I knew how to converse with her. Because again, as mentioned, you know, I'd come up and she'd think she was 12 or 10 and, and I'm there going, "Wait, wait, wait." I dunno how to deal...
Jim: That must be so hard to keep up.
Amanda: Yeah, I don't how to deal with where we are. So I'd start the conversation by just flicking through, Hey mummy, I've got a few photos, thank goodness for smart phones, at right now. (Yeah.) Would flick through previous, it was, and then I did go into the old photo albums as well. So she could touch, but would go through different photos and then I'd wait until she recognised one and then I'd go, "Okay, that's where we are."
Jim: That's so insightful. Just the use of the photos (Yeah) is really smart (Yeah.) in a way to, to know where you're at.
Amanda: To know where, and, and I used it for me, otherwise I'd turn up and I wouldn't know what to talk about. Okay. I could tell her about my day, but that's not going to mean anything to her and I'm not going to get any response back. (Yeah.) So, let me meet her where she is. And that's where the photographs made such a big difference. Because then I learned a lot about myself. I pulled out photos from when she was at university. I got relatives to send me photos of her. And I got all the stories that I never got as a child going, "Oh, so this is who this person is." And it was wonderful.
Jim: And that's lovely for you to carry on and be able to tell your own family, you know?
Amanda: Correct, correct. It was, look, it was a wonderful experience. But look, the regression, it, it never gets easy. And I am certain it isn't easy for her too. And somebody did ask me, "Amanda, how, how do you deal with the person that gave you life not knowing who you are?" I was like, "That is the worst heartbreak, ever." (Mm.) It is the worst because I feel...
Jim: That is the worst part of the entire disease, isn't it?
Amanda: Yep.
Jim: It's the thought of losing that...
Amanda: The thought of this person, I was this person's whole life once upon a time. - (Mm.) Like, I was the reason they got up. The reason they kept going through the tough days.
Jim: It's hard to imagine, isn't it?
Amanda: And now, she's looking at you going, "Who are you?" I was like, that is the worst. But you know what, that's where we've got to hold the moment. We've got to go, "Okay, you may not know who I am, but I know who you are." And I was like, that's what keeps me going.
Jim: If you were to give anybody listening, a lot of our listeners are obviously touched by dementia in some way, (Yes) and they're feeling isolated, (Yep) what would be your advice now for them to reach out or lean on someone, (Yeah, yeah) what would you recommend?
Amanda: Look there there is nothing, and I know this now, and I didn't at the time. But, there is no shame in what we're going through. There is zero shame. And, if I were to go back, in time, I will tell my younger self that, "Listen, what you're experiencing, although it's not in a textbook, it's real, and good for you for standing up and fighting. I wish you had fought earlier at 17 for the help And asking for help is not a sign of weakness." Because a lot of our cultures, you know, if you speak up about something negative, it's a sign of weakness. (Mm.) If you ask for help and say, "Hey, I don't understand." You know, it's a sign of weakness. No, it is actually strength. You do it because you love the person and because you love yourself too.
Jim: But I think for people to see with you as the example now, how different you are to the young 17-year-old. (Oh.) What are your views now on dementia compared to when you knew nothing,(Yep.) to all the things you've learned now. (Yep.) How do you look at it differently?
Amanda: My younger self would not have been able to sit here having met you today, and had such an open frank conversation with you because I'd be like, "Oh no, no, no, no." I, whatever perception that you're going to walk away with, that is not something that I want to stick on who mum and I are. You know, we were raised well, you know, explained about how the journey from Zambia to Australia and all of those trials and tribulations that she's gone through. She wasn't running away from things. She was running to a better life. (Mm.) And, who am I to sit here in a room by myself wallowing in the situation that we've been dealt with, and not living the legacy that she was trying to provide by living. So it's like, open up and you know what? Go out there and smell the flowers.
Jim: I love that.
Amanda: Just do it.
Jim: Thank you so much. Really appreciate it.
Amanda: Thank you.
[Music]
Jim: That's Amanda. She cares for her mum who's living with Lewy body dementia.
Hamish: And before that, you heard from David, he's living with Alzheimer's and a camera.
Jim: Hold the Moment is a podcast from Dementia Australia and it's produced by Deadset Studios.
Hamish: You can find more episodes and resources on Dementia Australia's website, dementia.org.au And make sure you're following Hold the Moment so you don't ever miss an episode.
Jim: Yeah, that's right. The show is hosted by me, Jim Rogers.
Hamish: And by me, Hamish MacDonald. The executive producers are Kellie Riordan and Sarah Dabro. The producers are Liam Riordan and Lucinda McAfee. Production Manager is Ann Chesterman. Sound Design by Slade Gibson.
Jim: A special thanks to the whole team at Dementia Australia and to everyone who shared their stories on this podcast.
[MUSIC]
[END OF RECORDED MATERIAL]
About the episode
Isolation is one of dementia's cruellest companions.
David, diagnosed with Alzheimer's disease in 2023, responded by doubling down on connection, swimming at dawn and photographing sunrises to share with strangers.
Amanda spent years hiding her role as her mother's carer, too exhausted and embarrassed to ask for help.
Both have learned the same hard-won lesson: reaching out, sharing your feelings and connecting with a community makes everything easier.
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 sessionsOnline and in-person sessions from Dementia Australia that build understanding of dementia and provide practical strategies for support and care.
Community Engagement Program Grants
Grants from Dementia Australia (up to $10,000) to support community-led projects that make communities more dementia friendly.
Social gatherings for people living with dementia and their carers to connect in a safe and welcoming environment.
A Dementia Australia program that links people living with dementia, their families and carers with others who share similar experiences, prviding peer support, shared understanding and a sense of connection.
Watch the interview
In this video, we go one on one with our podcast guests.
Transcript
[BEGINNING OF RECORDED MATERIAL]
David: I take photos of sunrises, living near the beach. You'll get up in the morning and 'click,' 'click,' 'click.' I've got hundreds of them, and I love giving them away. If I see someone with a young child and I ask the obvious question, you know, "When was your daughter born? This is the sunrise, the first day of your life and the date." Doing things a little bit differently is what I always like to do. I've got this thing called Alzheimer's. I'd like to do something with it.
Jim: Welcome to Hold the Moment, David, it's so nice to have you. So, thanks for making the time to come and see us today.
David: Yeah, it's a pleasure. Thanks very much.
Jim: You spent most of your professional life building communities. Tell us a little bit about your work as part of 'Jobs Gym?'
David: The Jobs Gym is something that a friend of mine and myself have been working on that's built along the lines of a gym. If you go to a gym, you've got to do the exercises, you can't spend your time just looking at the girls….
Jim: That's so right.
David: …. and what have you. You've got to do the exercises to meet a particular goal. Well, this John, ‘Jobs Gym’ concept is exactly the same thing. We work with the, mainly students that are disengaged, that don't know what they're able to do or what they think they can do. So, we've developed about 70 separate exercises about their whole mindset, about their dress, about their relationships and thinking about jobs in particular. They, there's the normal set of jobs, you know, "What do you want to do when you leave school?" “Oh, I can be a carpenter, or I can be a sparky, or I can be a boiler maker." But there are a whole range of opportunities that they've never really thought about.
Jim: So, you spent a lot of time in your career helping people and doing all of this sort of thing. When did you start to notice, anything about yourself that led to your diagnosis with Alzheimer's?
David: It probably followed a particular heart operation that I had. I had my aortic valve replaced and there, what we thought were some, a few little blood clots, were appearing. I've started to lose sight in one of my eyes and that further investigation and tests and what have you, finally got the, got the results that I had Alzheimer's.
Jim: And were you finding you were forgetful or what were the things that stood out to you that sort of...
David: Probably more forgetful than I always normally were.
Jim: Yeah.
David: But yeah, things like that. Not being able to remember someone's name.
Jim: Yeah.
David: Particularly someone that I've known well and been involved with. That's, it's, it's just the sort of thought pattern, you know, of, you know, getting things into systems and ideas.
Jim: It's hard to pinpoint, isn't it exactly what it is? I mean, even myself, like I resonate with what you're saying, even now, coming here, like, I lost my bag at the airport.
David: Yep.
Jim: Or I keep losing stuff, forgetting things, and it's like, it ‘drops out.’
David: Yeah. Have you seen my phone?
Jim: Yes. It's probably next to mine somewhere.
David: It's, that's one of the issues, you know, you'll, I'll start putting things down, forgetting where they are.
Jim: Yeah.
David: Walking out the door, coming back in. My wife says, "You're back again," "Yes." "You're back again."
Jim: Yeah.
David: And now it's, “Have you got everything?”
Jim: And when I was doing some research about you, you're this crazy early morning swimmer that gets up and goes in the ocean. Is it half past four in the morning?
David: Yes, it's half past four.
Jim: Tell me about that?
David: It's just something that I've been doing for some time. We swim in a local rock pool, in Wollongong.
Jim: Okay.
David: I usually get there at 4:30 in the morning because it's always good. I can get as many parking spots as you like, there's no one around but it's just a great opportunity just to do something really different that really enthuses you, and wakes you up, it gets you involved. And there's about four, maybe five other guys arrive at about by five o'clock and then that just builds a momentum there. They're out by five thirty or six o'clock and then there are other people coming into the rock pool, but it's just nice to be there as the first one.
Jim: And did you sort of put this together with these guys and sort of create this community where you...
David: They've been doing it for years.
Jim: So, you sort of slid into it.
David: Yeah, I slid into it.
Jim: And joined in?
David: Yeah, joined in, but they have, they've been doing it for years.
Jim: And what happens with the photography side of things? I heard you were doing some photography that was happening. Tell us about that.
David: I take photos of sunrises, and it's just something that I've been doing for quite some time because living near the beach, you'll get up in the morning and "Oh, there's a great sunrise." And 'click,' 'click,' 'click.' and get all these shots of it and I've got hundreds of them, hundreds of them and I love giving them away for people. If I see someone with a, with a young child, and I ask the obvious question, you know, "When was your daughter born?" And they say, "Oh, she was born on such and such a day." “Oh, I might have a photo of the sunrise.” And flick through the camera and would say, "Would you like it, and share it with people? This is the sunrise of the first day of your life and the date.”
Jim: That's pretty special. Did you ever think that your diagnosis would lead to building this sort of community that you're trying to create?
David: It's something that I've always, always done you know, getting involved with service clubs, charities, all those sorts of things, just things that I like to do. We had an annual event called the 'Shrivellers Dip'.
Jim: Do you tell us about this Shrivellers Dip.
David: Well, again, it's like swimming during winter.
Jim: Yes, I'm getting that idea.
David: Getting it, and...
Jim: I was going to ask you, how on earth do you get in, in winter? Is it cold? Is it really cold?
David: It is cold, but...
Jim: But it's invigorating once you're actually in.
David: Oh yeah, yeah, but the Shrivellers Dip was through our friends at Apex, the service organisation. And we set the date, which was the first Sunday in July, middle of winter, and we met at North Wollongong beach. And had to have a dip, but you could only wear your cossies. There were no wetsuits, no goggles, no…
Jim: Cold stuff.
David: And that really took off, the Shrivellers Dip become quite well known and we've, we ran that for a couple of years and made some fundraising activities out of it. And the like, there's always opportunities to do things with, you know, with an idea.
Jim: So, you've always done this sort of thing in a way. You also run a guy’s group where you get together, is, tell me a little bit about that?
David: Oh, that's 'secret men's' business.
Jim: That's the one, yeah. I think I remember it because it was to do with red wine.
David: Yeah.
Jim: Tell me a little bit about that?
David: We had, well, it all started I suppose with our, with our families. There were seven or eight couples and we all had children at the same school in Wollongong. And we started a wine club, the males, and we ended up setting-up this secret men's business, which had seven members. Two of them have sadly passed away and now we've got five but it's the third Thursday of the month. It's bringing along a bottle of red wine in a bag, in a brown paper bag and we taste it and carry on and what have you. Doing things a little bit differently is what I always like to do, and I was tending to think, "Oh well, I've got this thing called Alzheimer's, what can we do differently about that?" You know, “What can we do to assist people to provide change?” Or whatever it is, you know, that if I've got it, I'd like to do something with it.
Jim: What do you think, for people out there listening who perhaps have been diagnosed, what would your message be to them with regards to reaching out to the community?
David: I'd just say get involved. You know really, let people know that you, that you do have Alzheimer's or that you do have dementia and get out there and work with it. You can make a contribution, you know, you can make a difference.
Jim: So, I suppose really you are saying start small, yeah?
David: Yeah, there's no doubt about that. You know, going swimming every morning, you know, it doesn't have to be every morning, but if it's part of your routine, start with something as small as that. Putting your toe in the water.
Jim: Yeah.
David: And then your ankle, and then your leg.
Jim: I love that.
David: Whole body.
Jim: You're inspiring me now to go and do some more swimming. I'm doing my best, but I can't thank you enough for coming in and sharing with us your insight into the journey and so, thank you so much.
David: It's a pleasure.
Jim: Hold the moment is a podcast from Dementia Australia produced by Deadset Studios.
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Dementia Australia Logo
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[END OF RECORDED MATERIAL]
Transcript
[BEGINNING OF RECORDED MATERIAL]
Amanda: Somebody did ask me, "Amanda, how do you deal with the person that gave you life, not knowing who you are?" That is the worst heartbreak ever. I was this person's whole life once upon a time and now, she's looking at you going, "Who are you?" I was like, “That is the worst, but you know what? That's where we've got to hold the moment.” We've got to go, "Okay, you may not know who I am, but I know who you are." And I was like, that's what keeps me going.
Jim: The lovely Amanda, thank you so much for coming in. It's a pleasure to meet you.
Amanda: Thank you so much for having me today, Jim.
Jim: First of all, let's go back to that responsibility of care that you started to do when you were only 17.
Amanda: That's right.
Jim: What happened?
Amanda: Well, I was 17 years old as you've mentioned, in my last year of high school, HSC, very new to Australia as well. My family had just moved here from Fiji Islands actually, and I wasn't quite sure what it was because mum just, you know, she kept forgetting things, and it was like every day little things. Like, the kettle would boil, and you know, and it was those old kettles that whistle.
Jim: Uh huh.
Amanda: And I think, well, "Oh, why isn't she picking it up?" And then she'd come rushing in and yelling, "Who's left the kettle on?" But, “That was you, right?” And then it was, you know, getting late to be picked up from places and I kept thinking, "Well, what is this?" And we didn't really have a name for it at the time, which made it even harder.
Jim: More mysterious.
Amanda: Absolutely, because then there was no way of being able to talk about it and being a 17-year-old, taking mum to the doctors, because she was very stubborn, it was like, "There's nothing wrong with me." Yeah, and so taking her to the doctors, and trying to articulate exactly what was going on and nobody believed.
Jim: God, this would've been a minefield to try…
Amanda: Absolutely.
Jim: ... and work your way through it.
Amanda: Nobody actually believed that there was something wrong with her. They were like, "Oh look, she's what, 47 years old, perimenopause, it's menopause." And then it was, "Oh no, it's bipolar." And then "It's psychosis." And then she, because of all of those diagnoses, she was medicated and some of that medication really shuts you down as a person, like the really strong, heavy one.
Jim: Yeah.
Amanda: So she was almost in a zombie, comatosed form, so I had to then care for her because she couldn't work.
Jim: Mind blowing. I don't even know how you would navigate all of this. So, you had sort of incorrect diagnosis, you had confusion, and the medication.
Amanda: Yep.
Jim: And the signs to look out for.
Amanda: Yep. Yep.
Jim: How did you work through it?
Amanda: I hid it. I was very embarrassed. Friends would drop off and I, friends, not just my friends, but mum's friends as well because she was a very private person. And, our culture, like most ethnic cultures, you don't talk about what happens in the house, you know, things that could potentially bring shame and mental illness is definitely one of those things that you do not speak about.
Jim: Yeah.
Amanda: So, I hid it. Stopped having friends come over, and mum wouldn't answer the phone because having a friend over meant I'd have to mask any of the strange behaviours. Like if she lost her temper because she's forgot something, I'd quickly, you know, try and hide that, so how I handled it was in private.
Jim: That would've been hard for you from an anxiety perspective. You must have been, you know, on eggshells, really, a lot of the time.
Amanda: All the time, and it was extremely isolating. Now remember I'm 17, like all my friends were getting ready for their HSCs, meeting boys, you know, trying to sneak into clubs.
Jim: Yeah, yeah.
Amanda: Didn't get to do a lot of that. Didn't get to do a lot of it but it was a choice that I had made, and traditionally, it's an honour to care for your parent. And the other thing is, we didn't have anybody else. We don't have immediate family in Australia, so it's literally myself, and my sister at the time, and mum. That's all we had, and my sister went to University in Armadale, so she wasn't at home. So, it was literally myself.
Jim: This all fell on your shoulders, literally.
Amanda: Correct.
Jim: That would've been so hard to handle, also, just leaving her at times when you're trying to do your thing and you've got that responsibility and you were going through your own struggles at this point, weren't you?
Amanda: Yes.
Jim: And did you sort of put that on the side?
Amanda: Completely.
Jim: What happened?
Amanda: I got really good at compartmentalising things and locking it up and kind of, you know, cataloguing it, putting it away and going, “I'll come back to that later.” And that was me. And a lot of people that have known me have always said, “You're so, you, you're such a hard person, Amanda.” I'm like, “Yeah well, I've got no time. I've got no time to be empathetic or to feel or to even just stop and listen to you because all of that energy is required here.” I've got to stop and navigate what's going on with mum because this is the person, this is my person. Like, this is who brought me here on this earth that, you know, single-handedly raised three daughters, on her own, and at the age of 28, where she first experienced her own mental illness. Divorced at 32, I was two years old. Travelled from southern Africa all the way to England, Fiji and Australia, with three kids. I was like, that is strength beyond...
Jim: That's enough in itself. There's a book right there.
Amanda: Oh no, I am writing her memoirs. So, but yes, it was just haven't given me any space to be me.
Jim: And did you, when you finally got to a diagnosis and they changed her medication, did you see improvement there?
Amanda: I thought I'd be relieved when, you know, we had an answer to all the questions I had.
Jim: Must have been a shock.
Amanda: Dementia wasn't something that I even knew about, I didn't even know what it was. I didn't know that it even existed. So, hearing somebody, you know, explain to me that, "Look, she's got Lewy body's dementia, particularly." And I've gone, "Okay, what is that?" And doing my own research on it and being told what the she, you know, the shelf life is of it.
Jim: Scary.
Amanda: Right. I've gone, okay, instead of me feeling like we've got an answer, it drew a line in the sand for me and said, "Okay, now every day has a life shelf." Like there is an expiry date to every day so I'm going to say it got better because it allowed me to stop and stop searching…
Jim: Yeah.
Amanda: … for a solution. I've gone, okay, this is something that is now completely out of my hands that I've been shown all of the scientific, the medical evidence, the physical evidence that this is definitely what she's got.
Jim: Yeah.
Amanda: So, I'm going to let go of trying to find that solution and I'm going to stop and live in the moment and start living.
Jim: What did you do from there? Where did you turn to?
Amanda: So, where I drew my support was firstly my immediate family. For them to understand that yes, as much as I'm, you know, they see me as a super, strong, you know.
Jim: Independent woman.
Amanda: Resilient, independent. A big part of me is breaking. I'm slowly losing myself and being, drawing from mum's experience going, “Okay, I can't hold it all in, I've got to start talking to people." Is where I sat my husband down and said, "Okay, I'm disappearing with her memory." And what really scares me is, who am I going to be when she's gone, because I've spent most of my adult life caring for her.
Jim: Mm.
Amanda: I don't know what that looks like, and joining Dementia Australia and becoming an advocate, like each region has an advocate group.
Jim: Mm.
Amanda: So, we'll catch up for lunch. We've got a WhatsApp group, so those days where you feel like absolute hell, somebody will message and it's just that, the constant check-ins. So, we don't necessarily have to see each other every day, but somebody will drop a message or something they saw online, and you know, pop it in there. That little community was very helpful.
Jim: When I was looking through my research, I noticed that your mum, at times, went back to her mother tongue.
Amanda: Yes.
Jim: And so, tell us a little bit about that, what happened?
Amanda: So, she, it's not that she forgot how to speak English, she just preferred to speak in Tonga.
Jim: Okay.
Amanda: Now, I understand it, but I don't speak Tonga, unfortunately.
Jim: Ah, interesting.
Amanda: But I can understand.
Jim: That could be very useful.
Amanda: I can understand, oh, it's very, very useful but with the, with mum's regression, she would go back in time so there were times where she thought she was 12.
Jim: Oh.
Amanda: There were times where she thought she was at university and don't get me wrong, I loved the university stories because I got all the juicy...
Jim: Yeah, yeah, I bet.
Amanda: The juicy stories but when I'd go, when I, when I put her in a nursing home, because it got to a point where I had to get care for mum. Whenever I went to visit, I made sure I had photos with me and that would help me…
Jim: Trigger.
Amanda: … understand where we were on the timeline.
Jim: Uh-huh.
Amanda: So that I knew how to converse with her because again, I just mentioned, you know, I'd come up and she'd think she was 12 or 10 and, and I'm there going, "Wait, wait, wait." I dunno how to deal...
Jim: That must be so hard to keep up.
Amanda: Yeah, I don't how to deal with where we are, so I'd start the conversation by just flicking through, "Hey mummy, I've got a few photos," thank goodness for smartphone, at, right now. Would flick through prev... it was, and then I did go into the old photo albums as well so she could touch but would go through different photos and then I'd wait until she recognised one, and then I go, "Okay, that's where we are."
Jim: That's so insightful just the use of the photos is really smart in a way to know where you're at.
Amanda: To know where and I used it for me, otherwise I'd turn up and I wouldn't know what to talk about. Oh, okay, I could tell her about my day, but that's not going to mean anything to her and I'm not going to get any response back.
Jim: Yeah.
Amanda: So let me meet her where she is and that's where the photographs made such a big difference, because then, I learned a lot about myself. I pulled out photos from when she was at university. I got relatives to send me photos of her and I got all the stories that I never got as a child going, "Oh, so this is where this person is."
Jim: And that’s lovely for you to, to carry on and be able to tell your own family, you know?
Amanda: Correct, correct, it was, look, it was a wonderful experience but look, the regression, it never gets easy and I am certain it isn't easy for her too. And somebody did ask me, "Amanda, how, how do you deal with the person that gave you life, not knowing who you are?" I was like, "That is the worst heartbreak ever."
Jim: Mm.
Amanda: It is the worst because I feel...
Jim: I think that is the worst part of the entire disease, isn't it?
Amanda: Yeah.
Jim: It's the thought of losing…
Amanda: The thought of this person, I was this person's whole life, once upon a time, like, I was the reason they got up, the reason they kept going.
Jim: It's tough to imagine, isn't it?
Amanda: And now, she's looking at you going, "Who are you?" I’d say that is the worst, but you know what? That's where we've got to hold the moment. We've got to go, "Okay, you may not know who I am, but I know who you are." And I was like, “That's what keeps me going.”
Jim: And I think you couldn't put it better yourself, to hold the moment. I mean that's exactly what this...
Amanda: This is what we're here for.
Jim: ... is all about.
Amanda: Right.
Jim: Holding onto those moments.
Amanda: It is, and they're so important.
Jim: If you were to give anybody listening, a lot of our listeners obviously touched by dementia in some way;
Amanda: Yeah.
Jim: And they're feeling isolated, what would be your advice now for them to reach out or lean on someone?
Amanda: Yeah.
Jim: What would you recommend?
Amanda: Look there, there is nothing, and I know this now, and I didn't at the time, but there is no shame in what we're going through. There is zero shame and if I were to go back in time, I would tell my younger self that, "Listen, what you're experiencing, although it's not in a textbook, it's real, and good for you for standing up and fighting. I wish you had fought earlier at 17 for the help and asking for help is not a sign of weakness." Because a lot of our cultures, you know, if you speak up about something negative, it's a sign of weakness.
Jim: Mm.
Amanda: If you ask for help and say, "Hey, I don't understand." You know, it's a sign of weakness, no, it is actually strength. And you do it because you love the person and because you love yourself too.
Jim: But I think for people to see with you as the example now, how different you are to the young 17-year-old. What are your views now on dementia compared to when you knew nothing to all the things you've learned now, how do you look at it differently?
Amanda: My younger self would not have been able to sit here having met you today and had such an open frank conversation with you because I'd be like, "Oh no, no, no, no." I, whatever perception that you're going to walk away with, that is not something that I want to stick on, who mum and I are, you know. We were raised well, you know, explained about how the journey from Zambia to Australia and all of those trials and tribulations that she's gone through. She wasn't running away from things; she was running to a better life.
Jim: Mm.
Amanda: And, who am I, to sit here in a room by myself, wallowing in the situation that we've been dealt with, and not living the legacy that she was trying to provide by living so it's like, open up, and you know what, go out there and smell the flowers.
Jim: I love that.
Amanda: Just do it.
Jim: Thank you so much. Really appreciate it.
Amanda: Thank you.
Jim: Hold the moment is a podcast from Dementia Australia produced by Deadset Studios.
[END OF RECORDED MATERIAL]
Ask Us Anything
Transcript
[BEGINNING OF RECORDED MATERIAL]
Kevyn: Hello. My name is Kevyn. I am a First Nations advocate with Dementia Australia. These lands in which we are meeting are many countries filled with languages similar and different. For more than 50,000 years, we have come together to trade knowledge, to learn and to teach. Today, we join to keep up that tradition. So with that in mind, we now pay our respects to the Traditional Owners, to Elders past and present, to those First Nations people joining us here today. Welcome and thank you.
Jim: Community can make all the difference when dementia enters a family. From practical help to emotional support, there are so many ways that people can stay connected, which is so important to feel supported and part of their community. Hi, I'm Jim Rogers, and this is Hold the Moment. It's Dementia Australia's award-winning podcast which gives you real stories, insights and support when you're dealing with dementia. On our Ask Me Anything episodes, you send us questions that you'd like to be answered about living well with dementia. So, David gave us a call with a great question.
David: Hi, I'm David. I'm from Perth, and someone living with dementia often visits my cafe. How can I support them without intruding?
Jim: Here's Dementia Australia's policy advisor, Rose Capp.
Rose: I think it's really wonderful that you're taking the initiative on this, David. And look, my first suggestion would be, if you're comfortable doing so, ask the person who comes into your cafe if there's anything that you can do to make their visit more enjoyable. You'll get the best information and the most direct information from the person living with dementia. If they're visiting the cafe with family members or friends, you could also ask them; they'd be a good source of information and guidance too. One thing I would say about cafes is we love them. We love coffee, but they can be very noisy and busy places. Now for people living with dementia, often, background noise can be a real issue. I recall having a discussion with a dementia advocate a while ago, and she used to go out for coffee with friends at a particular cafe, but she said the combination of the coffee machine, people talking, background music made it really uncomfortable for her, and in the end, they had to find a cafe that was more quieter and more conducive. So, if you can find perhaps a quieter space for your customer, that might be really helpful, just somewhere a little bit further away from the noisiest areas that might make their visit more enjoyable. Often, people living with dementia find wayfinding and navigation can be tricky in busy, cluttered spaces. So, making sure that that quieter, more comfortable space is easily accessible for the person too, they can find their way. There's no confusing signage, and there's a clear path that they can visualise easily. It might be something as simple, also, as just asking your customer, do they have a regular order? At my local café, I love it. They see me coming in, and they know exactly what I want. And it may well be that that's helpful for the person living with dementia, they have a regular coffee in a particular way. So that could be something you could do as well. Again, this is some feedback from dementia advocates, but often people have changes in their vision and spatial awareness when they're living with dementia, so that can make aspects of the physical environment quite tricky for them. So, for instance, they might have difficulty distinguishing objects from a background if they're the same colors. So, in a cafe, if you had a white tablecloth and you put down a white coffee mug, for someone living with dementia that might be actually quite hard to distinguish the difference between the table and the coffee mug. So, having things like crockery with a contrasting color edge or rim, or perhaps a different color tabletop or tablecloth, that could really be very helpful for someone living with dementia and experiencing those visual changes. So, I think a lot of these suggestions, they're quite simple but really effective strategies, and they could make the difference between someone really enjoying their experience at your cafe.
Jim: Ruth contacted us with this question.
Ruth: Hello, I'm Ruth, and I live with my brother who is living with dementia, but we'd love to connect with others in our community in the same boat. So where do we start?
Rose: Thanks for that question, Ruth. It's a really important one, because it's quite a common experience for people living.with dementia, and also those caring for and supporting them, to feel a bit isolated. And we know that social connection, engaging the community, is so important for both people living with dementia and carers. So, there's lots of potential ways that you could connect with your community and get the kind of support that you need. The first suggestion I'd have is maybe tapping into your local community centre, or if you have a community house, or even a community health centre or a GP clinic. Those kind of places have a lot of information about support groups, activities, information and other resources. So that's probably a good place to start. Similarly, your local council might be a great place to go to find out information about, not only support groups, but activities that are on in the local area. Obviously, it will depend on what you and your brother are interested in, too, in terms of what sort of things you want to engage in, but there's a range of things that you could sort of think about. There's a number of activities and programs that are tailored specifically for people living with dementia. So, for instance, Men's Sheds, community choirs for people living with dementia and carers, and a range of other activities. As a carer,. Ruth, I'd also suggest, if you can find a local carer support group that can be really invaluable. I've talked to a lot of carers over the years, and many of them have said to me just how vital that was, just meeting other people in a similar situation, sharing information and tips, and just knowing that you're not the only person out there caring for someone living with dementia. It's been interesting recently to notice how many art galleries and museums, both locally and statewide, are also starting to develop programs for people living with dementia. So, if that's something you or your brother are interested in, that might be worth investigating as well. The other suggestion would be to look at Dementia Australia's Dementia Friendly Communities program. So, you could hop on our website and have a look at the page there. There's a directory page so you could plug in your local region or area, and you can find specific activities, including things like Memory Lane Cafes that are going on in your area.
Jim: If you've got a question, you can also call the free National Dementia Helpline on 1800 100 500. Dementia Australia's trained advisors are available 24 hours a day, every day of the year. And look out for more episodes of Hold the Moment. This episode was produced by Deadset Studios for Dementia Australia.
[END OF RECORDED MATERIAL]
You asked, we answered
This episode answers questions about how to support someone living with dementia without intruding and how to connect with other carers. Rose, a Policy Advisor at Dementia Australia, offers practical and compassionate strategies.
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 3 dives into the topics that can be hardest to talk about, with compassion, practicality and a unique sense of hope.
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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.