Episode: Hold on to family

Families reflect on the impact of a loved one’s dementia diagnosis

A dementia diagnosis can have far-reaching impacts, especially on families. Hear from co-host Hamish Macdonald on how his relationship with his dad has evolved in unexpected ways following his father’s diagnosis. Hamish also speaks with his co-host Jim Rogers’ daughters, Millie and Daisy, about their strong family bond in the face of adversity.

Hold the Moment podcast S01E07: Hold on to family

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 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.

[Music plays.]

Jim: Hey Mag, shall we go and get the coloured Play-Doh out?

Maggie: Yep.

Jim: Which colours do you like?

Maggie: The green.

Jim: Green? Where's the green?

Maggie: Here!

Jim: Okay, what is it you're doing?

Maggie: Putting this, putting green in here.

Jim: Okay. How do you do it?

Maggie: Like this.

Jim: Ah. What's happened?

Maggie: It's all mixed in!

Jim: Pink - and what other colour?

Maggie: Pink and blue! It's a lollipop.

Jim: Looks like a lolly. You could make a round bit and put it on the top, roll that up with your hands. Do you remember how to roll it into a ball? That's clever.

Maggie: Carefully. This is easy.

[Music plays.]

Hamish: That's Jim , doing what so many grandparents love to do, caring for his three-year-old granddaughter. Her name's Maggie. Except his situation is a little different from most. Jim is living with younger onset Alzheimer's. I'm Hamish and this is Hold the Moment. It's a podcast from Dementia Australia about dealing with life after a diagnosis of dementia. Across this series, you've been hearing from people living with dementia and how they're dealing with some of the changes they're faced with: whether it's adjusting to a new exercise routine, grappling with disturbances to sleep, coping with changes to your close relationships with family and friends. It's something my family's had to deal with too. My own dad has Parkinson's and Lewy body dementia, and you'll hear more about that later in this episode. And I'm hosting this series with my friend Jim.

Jim: G'day ‘Ham’, how are you?

Hamish: I'm very well. Thank you. Good to see you. I know you're really close with your entire family and they've been critical to every stage of your journey, but just tell me a little bit about the clan.

Jim: Well, the clan are amazing, but I'm biased. So I've got my husband, Ty, who is amazing human – we’ve been together for 25 years next year – my eldest daughter Millie, my youngest daughter Daisy, and also my son Harvey, who's in the Gold Coast. So yeah, they're a pretty amazing bunch, and love them to bits.

Hamish: All right, let's meet your daughters, Millie and Daisy.

[Music plays.]

Millie: I'm Millie. I am 33 and I'm the eldest, and I have two little kids: Maggie and Rocky.

Daisy: I'm Daisy. I'm 30. I have two little boys and I'm Jim's youngest daughter: the favourite one.

Hamish: Are you really?

[Laughter.]

Daisy: Yes, I am.

Hamish: Is she really the favourite?

Daisy: Don't tell the other one.

Daisy: I think so.

[Laughter.]

Millie: It changes.

Daisy: Yeah, it depends on the day.

Millie: Yeah, depends on the day.

Hamish: And so have you always had that kind of big sister/little sister dynamic? What's the vibe?

Millie: Yeah, I reckon we're way closer now than we were when we were teenagers, but we're pretty inseparable at the moment: like see each other, talk to each other every single day.

Daisy: Yeah, I would always look up to Millie as like, not only a sister, but a motherly figure as well. Because obviously we lost our mum when we were younger. So that's always been really nice for me.

Hamish: Because you guys were pretty young when your mum died, right?

Daisy: Yep, I was – I’d just turned five.

Millie: Yeah.

Daisy: I don't remember too much of her at all, to be honest.

Millie: Yeah, I remember bits, but not a lot, and – but I remember dad telling us, and that day was vivid. I remember every single detail. I remember our grandparents just took us to a park, and we were just playing, and then we'd get home, and I remember dad was wearing this bright green jumper with a red like letter on it. Yeah, then he sat down and told us, and we just didn't believe him. And I ran around the house trying to find her: thought he was joking, and then pretty quickly realised it wasn't a joke, and yeah, it was pretty full-on.

Hamish: What was your dad like at that time?

Millie: So strong, so strong.

Daisy: Yeah.

Millie: We never saw the hard side of it, because he was just a brave face.

Daisy: He used to take us to school and all of our hair would be perfect, our lunches would be packed, our clothes would be perfect, and he would walk us to school and just have a brave face, and then go home and just close the curtains and cry or be upset.

Millie: Mmm, mmm [in agreement].

Daisy: And you know, reality would sink in, but yeah, we never were aware of how hard it was for him.

Hamish: Can we go back a few steps? Millie, how did you find out that your dad had received this dementia diagnosis?

Millie: So I was in Brisbane at this point, and my family were in Sydney, and I remember hearing bits and pieces about how Dad had these scans, but they were really underplayed: “oh, I'm just going in for this thing.” And I just, yeah. So when he told me, I remember standing outside Maggie's room.

Hamish: This is your daughter?

Millie: Yeah, and I was cleaning or something, and I was on the phone and yeah: “I’ve followed up about these scans”, and then Dad said: “Well, I've been diagnosed with early onset Alzheimer's”. And I just froze and felt like the floor had just been ripped under my feet, and just couldn't believe what he was saying. I didn't know the severity of it and I remember then googling it and just being – I had to communicate it to my husband. And I was just like, “this is unbelievable”. Like, actually unbelievable. I just couldn't believe it.

Hamish: What you were reading, did that match up with what you saw in your dad, I guess?

Millie: No.

Daisy: No.

Millie: No. And then I thought: “What haven't you been telling us Dad?” Because I thought, you know, he must not be telling us certain things about what he's remembering. And then he said, you know, when he went into one of the meetings, he was on his phone and couldn't remember how to put it on silent or something that, you know, everyone just knows how to do. So yeah, it was just wild. I just, yeah, I just couldn't believe it. And also went just really numb. And then went down a bit of a rabbit hole of finding out about it, and we were all educating ourselves together, because we didn't know anyone who's had it. Not a grandparent, not a cousin or an auntie: like no one, no one in our family, and he just got it. And it's just bizarre to us.

Hamish: Do you advise the ‘Doctor Google’ path? Is it helpful? Is it? I mean, I've spent so many hours reading…

Millie: Yeah.

Hamish: …everything I can find. I'm just not entirely sure how useful it is.

Daisy: I think information is key: for me, personally. I feel more comfortable with something the more that I know about it, can learn about it, read about it, can relate to it. Hear people talking about the experiences that I'm going through. You know, to sort of – it's comforting for me.,

Millie: Whereas I found it like the more I read, the worse it got. And I just remember Ty being so incredible with advice and videos and things he had seen, and he'd share them with us, and that was really helpful to me. And then hearing through Dad's professionals as well, and Dad communicating it with us.

Hamish: How involved have you guys been with all of the decision-making that's come along with this period of your dad's life? Because there's a lot of really confronting decisions that can be quite difficult. How much have you been part of that?

Daisy: I'm power of attorney with Ty, and I have to, you know, make executive decisions like that for him. If Dad had to go into, you know, get additional support, or in a care home or something like that, then that's the responsibility that we would have to make together and make those decisions for him. The best for him.

Hamish: Are you daunted by that?

Daisy: Not really, actually. I think it's a big responsibility, but you know, all I want is the best for him, and all I care about is, you know, his happiness, his health, what's most comfortable for him. So I feel happy to be on board making those decisions. I think it's really important to be prepared and have some sort of idea, not make a decision based on, you know, emotion, because once they've declined and, you know, it's just incredibly raw and sad. You don't want to be making a decision based off those feelings, you sort of just have to start preparing what you're wanting to be doing now, whilst you can.

Hamish: Obviously your dad lives for the grandkids.

Millie: Mmm.

Daisy: Yep.

Hamish: How much of that can he still do? And how are you managing that as things evolve?

Daisy: Yeah, he's definitely an amazing granddad and is so present. And, you know, just gives 150 per cent all the time.

Millie: Yeah, amazing granddad. My kids are just obsessed with him and Ty and yes, so much effort. Even Dad will go a week without seeing Maggie, and after three days, he's FaceTiming her, saying, “I miss you so much, Grand” (they call him ‘Grand’), “we'll see you really soon”. And, yeah, it just puts in so much effort, but we're just really mindful yeah, sometimes we have to say, “go and have a rest”, or the four kids all together – like, he loves everyone being all together, but it's also a lot and a bit of a sensory overload. So it's like, we just make sure there's not music on and, yeah, go for a little walk outside, so it just breaks it up a bit. And have that one-on-one with the kids is better for him.

Daisy: He used to, you know, have the kids on the dedicated days. So like, for example, he'd have Maggie on a Tuesday, Archie on a Thursday and things like that, and or Maggie would sleep over and things like that. But I think Millie and I are very conscious of him becoming tired, and it's quite draining for him now, so.

Millie: Which he finds really hard, because he wants to take them to their cottage, you know, for a week and do all those things. And I really hope we can make that happen, but at the same time, like, we might not.

Daisy: Yeah it's hard to accept those things, definitely, you know, like, he'll say: “wait till they're older and we'll all be going on holidays”, or you know, “we're gonna get bunk beds and they'll all come for sleepovers, and we'll watch movies”, and it's so incredible to hear and think in your head, but it's like the other side of that is “is that really what's gonna happen?”, you know, and you hope and you pray, but you just never know. So it's double-edged sword, in a way.

Hamish: Your dad said to me that when your mum died, when Lorna died, he kind of went into a bit of a ‘super-dad’ mode. That was his response to it, and he compared that with now and learning the news, and wanting to give you guys an impression of everything that it was all okay. Do you… can you see that?

Jim: Yeah, as soon as you just said that I'm thinking, “oh, my God, he's done the same thing with our grandkids”.

Millie: I, for sure, agree with that.

Daisy: Like ‘super-granddad’.

Millie: Yep.

Daisy: A hundred and fifty per cent of the time, every day, to protect them, but also for us, because he puts on a brave face for us as well. Definitely.

Millie: Yeah. He definitely puts on a brave face, yeah. Like, we kind of forget what he's going through, in a way, because we don't talk about it that often, and he's doing so well that, I mean, sometimes we even forget. And then we just did a memory walk, and we all got together. And that was really confronting, because we don't do these things where we sit and talk about it. We just, we try to put on a brave face, too for him, and just live normally.

Hamish: I imagine for a lot of the people listening to this, it's kind of going to be a similar experience of, “okay, we want to make the best of this time, yeah, but there's also some really tough bits of this”. So to the extent that you're happy to, can you just share a bit about that?

Millie: Yeah, I think it's, you know, you put one foot in front of the other every day, and you try and live a normal life and be there for him and things like that. But, yeah, you have moments where, like, I'll just, just not stop crying, and just like fall into my husband's arms, and then I literally wipe the tears away, and I'm like: “No, I'm fine, now let's go”. I'll do that for another few months and then I only did it recently with a friend, and my friend’s like “are you okay?”. And I'm like: “yeah, this is just wild, because people ask you how he's going and he's going so well”, but when you think about what the future's going to bring, it's, yeah, it's it's scary.

Hamish: When you have those moments. What is it that you're thinking about?

Millie: My biggest thing is my daughter.

[Child makes a funny noise.]

Jim: What are you doing, Mag?

Maggie: Eating lollipop.

Jim: Eating the lollipop?

Maggie: And pretending I’m a bird.

Jim: You're a little bird.

Millie: And him not like knowing who she is, because they're just so close, and she just lights up his life. All the grandkids do, but I think Maggie's a girl, and she was the first, so she has this really special connection with Dad. So for me, it's that. I think I will be able to find a way to be okay. I will. But for her, it's – that's what's really killing me. Yep.

Daisy: Dad and I are super-close. He's like, my best friend. So it's like, I just can't imagine not having him to talk to or, you know, ask questions, because I literally lean on him for everything, like, what pillow should I buy? [Laughter.] It's a joke. It's ridiculous.

Millie: They do talk. I'm like: “Dad, can you answer my…?” “Sorry I was on the phone to Daisy.” “Can I have a minute?”

Daisy: But, you know, my partner makes fun of me because he's like: “Oh, are we allowed to get – not allowed, but we, should we get – this pasta or, you know, do you have to ask your dad first?” sort of thing. So we're super, super, super-close, and I talk to him about everything. So, yeah, it's just like the thought of not having that just, it's so hard to comprehend. And, yeah, sort of, I lock away those feelings because I don't want to deal with it. It's tough.

Millie: Mmm.

Daisy: It's really hard.

Hamish: I know you’re sort of cautious in what you say, because your dad will be listening to this. G'day Jim!

[Laughter.]

Daisy: Hi Dad!

Hamish: And there's obviously stuff that's difficult to talk about. What do you want him to know that you kind of haven't been able to say?

Daisy: I want him to know that it's okay to talk about it and it's okay to be – I don't want to say, ah, I don't know the word.

Millie: Vulnerable.

Daisy: Vulnerable, yeah, it's okay to be vulnerable and it's okay to use us for support, and not always put on a brave face to, you know, protect us, because we at this point in our lives, like all we want to do is protect him. We just want to make sure that he's happy and comfortable, and anything that we can do to make him feel better, we’ll do.

Hamish: What about you Millie?

Millie: Oh, just that he's the most, like, amazing person and the greatest Dad.

Daisy: He is, yeah.

Millie: And yeah, like Daisy said, like, let us help you. We have kids of our own now, so it's like, we know, we know that we're his babies, but it's like, let us help you. We just adore you. And, yeah, he's just one of the greats.

[ Music plays.]

Jim: Okay, Hamish, you've had the chance to dig into my family. So now it's my turn to turn the tables on you.

Hamish: Great. [Laughs.]

Jim: You're not used to being interviewed, so it's going to be interesting to put you in the chair, I think.

Hamish: Yeah. Do your worst.

[Laughter.]

Jim: Firstly, I just wanted to go back and chat a little bit about your dad and ask you what qualities you think you might have got from him?

Hamish: Probably a fair degree of stubbornness and iron will. Dad's also very independent and has always been very independent, and I think I've probably got that from him: like independent thinking.

Jim: Yeah.

Hamish: I don't think Dad is someone that ever likes being told what to do, or even feeling like he's just going along with the, you know, the pack. So maybe I've got that from him. Dad loves the outdoors and he's always been very active and sporty, and I've got that too. So yeah, maybe, maybe I've got some of the good and some of the bad.

Jim: Let's hope more of the good. But you, since discovering his dementia, have you noticed any of those qualities that you talk about his independence being affected?

Hamish: Yeah. I mean, absolutely. I guess one of the things about Dad's situation is that he's lost all of his independence and I think that's what's been particularly confronting for him, but also challenging in terms of trying to help him deal with it and be cared for in the right way. So Dad was initially diagnosed with Parkinson's disease and then Lewy body dementia, and so he has, I think, always struggled with that diagnosis. You know, he's a pharmacist, so he knows all about the medication. He's able to talk very cognitively and in great detail about that side of it, but then will really lack insight into what his needs are and what his limitations are. So all the way through this process, it's been a real, I guess, point of friction for him with his family about what he is and isn't able to do.

Jim: And frustrating.

Hamish: Oh, he's hugely frustrated. You know, he still wants to live on his own. He still wants to move to Queensland, like you. He wants to live in a flat on his own in Queensland. He's wanted that right the way through this process, even though he can't cook or care for himself. He can't now use a phone or a laptop. He couldn't take money out of a cash machine. And that's been a sort of steady decline, I suppose, but this whole experience has meant that I've had a more kind of intimate relationship with Dad than what I would ever have expected, because you sort of have to get to know parts of your parent, you know, and their life in a way that you would never anticipate and even see them, you know, sobbing on a bed, crying or sort of talking about, you know, wanting their life to be over, and things like that.

Jim: Things you never really expect to hear from the parents, sort of that role reversal?

Hamish: Totally, but just also not even the parent/child part of the relationship. Just, it's not really ‘him’ to kind of be like that. You know, he's always been this force of nature, very determined, very Scottish, you know, that kind of like ‘hard Presbyterian work ethic’ and all that kind of thing; kind of dour guy and, yeah, so to see someone like that in a really deeply vulnerable situation is quite confronting.

Jim: I can imagine. Just take me back a little bit, just to when was he diagnosed, and what were the signs that sort of led to that diagnosis?

Hamish: It was a fairly gradual process, actually. So I come from a place called Jindabyne in the Snowy Mountains of New South Wales. That's where I grew up, and Dad remained there up until a few years ago. Our house was out of town in a little hamlet called East Jindabyne. And my parents have not been together for a long time, so Dad was living there for many years on his own, and it was obvious to me – it had been obvious to me for some time – that he was not really himself, that things were declining a bit. There was no diagnosis. But for someone that had always been so physical and so active and so kind of disciplined, it seemed like that was falling away a bit. His clothes would kind of not fit, or his trousers would be falling down. You know, there'd be sort of more bathroom incidents. He was clearly, I guess, forgetful, or, you know, his long-term memory would be brilliant. But then there would be more obvious recent stuff that was sort of not all fitting together. The big thing that stood out to me was that he was just increasingly unable to kind of maintain the home.

Jim: And prior to that was he always very organised, very on the ball?

Hamish: Yeah, like he was never technological. So, you know…

Jim: But very tidy and…?

Hamish: Yes and very kind of just ‘on point’ with stuff.

Jim: Yeah.

Hamish: But it wasn't like that. I'd go down and the house would sort of look like – I used to describe it as being like the – it looked like the Unabomber lived there.

Jim: Yeah.

Hamish: So I think he was coping or adapting to whatever was going on for him by putting everything that he needed out on benches, rather than away in drawers. So all of the cutlery that he used would be kept on the bench.

Jim: So, visible?

Hamish: Yeah. Or he couldn't use the window blinds properly, so they'd have like Post-it notes clipped to them, showing him where to raise them to.

Jim: Like he had a backup plan for everything to try and make everything simplified?

Hamish: Kind of, yeah. And I actually watched a story on The 7.30 Report about an author in England that I think was living in – living with – dementia, and she was doing something very similar. So I guess I, you know, I had some kind of inkling, but not: there was no diagnosis. Anyway, the GP from Jindabyne rang me and said: “We think you probably need to come down and come to an appointment with him so we can just talk about where things are at”. And Jindabyne is a small community. It's really tight knit: Dad had been the pharmacy there for many, many years, so he knows most people in town. But basically, the substance of this appointment or meeting was ‘you need to go to hospital, but you need to be tested for a whole bunch of things, because, really, the community's been supporting you a lot, but it's kind of becoming too much’. And so it turned out, he was reliant on people for lots of things: more so than we even knew. People were helping him change his bedsheets or helping him bathroom or, you know, it was more than just kind of neighbourly friendly help. And so when he was in hospital, he was diagnosed with Parkinson's. It was subsequent to that that he was then diagnosed with Lewy body dementia, which is not disconnected from Parkinson's. They're often described as being on the same –on a spectrum – and so he's been living with that ever since.

Jim: So who goes with your dad to his appointments now?

Hamish: I go to a lot of them. My big sister sometimes takes him to his skin specialist appointments. Thankfully, we have a GP that visits him in the aged care residential setting that he's in. And you know, gradually he's going out to less and less appointments, because it's become too difficult for him, actually.

Jim: Can it be tricky now negotiating who does what with the siblings?

Hamish: Yeah. I mean, I think any family will have great challenges dealing with a relative that's living with dementia. And I think it's one of the things I've learned through this is just the value of communicating: having open conversations really early on. Whether you have dementia in your life or not, but for adult children of parents to talk to them about what they want, what their wishes are, what the arrangements are going to be and vice versa, for the parents, you know, who are ageing to have those conversations as well. Even though some of the stuff might be confronting or difficult or emotional, I just think it's so much better to have those chats when you can and when there's not the…

Jim: Early on.

Hamish: Yeah, totally.

Jim: And do you tend to agree, all of you on the same thing? How do you come to an agreement?

Hamish: Um. Don't really. Yeah. So, yeah, it's been, it's been really difficult, you know. And you know, obviously want to be respectful of others. And, um, ah, you know.

Jim: It’s tough. All of this is tough on a family, isn't it?

Hamish: It absolutely is. You know, people talk about dementia at rightly so, because of, you know, and focus on the person that is living with that condition. But actually, I think when that happens, the condition impacts everyone in that, you know…

Jim: It does, yeah.

Hamish: …in that little ecosystem. And the way I've approached it all along is just to try and give him dignity: not that he's said this explicitly, but my impression is that he feels like the whole thing's very undignified, and he's an incredibly proud man. Always has been, and – I just – my sense of it is that he feels humiliated by what he's living with and the situation that he's found himself in. And so I always just approach everything with trying to give him as much dignity around it as I can. So, make sure he's always got nice clothes to wear: something that he would like, you know. Just trying to make sure that, you know, the doctors are good, that attention is being paid to all the small details, so that – because it's very easy for someone in this situation just to be kind of lost in the system, I think – you know, people living with dementia, they need love and they need support, but they need advocates as well. They need people that will go in with them to the appointments or follow up after the appointments, or read the detail in the letters from the doctors, or see the bit of medication that's missing, or…

Jim: Yeah.

Hamish: You know, just actually getting your head around the really fine detail of what someone's needs are and being able to advocate on their behalf. I never expected that would be part of this, but I think it is.

[Music plays.]

Hamish: Hold the Moment is a podcast from Dementia Australia. You can find it in all podcast apps. Don't forget, there are more resources available on the Dementia Australia website as well. And help is at hand, via the free National Dementia Helpline, you can call it 24 hours a day, every day of the year on 1800 100 500.

Jim: And we also have a bonus episode of tips for you from the helpline too. You'll find it in your podcast app now. So if your family needs help on navigating life now you have a diagnosis, download it right now.

Hamish: Hold the Moment is produced by Deadset Studios for Dementia Australia. This episode was produced by Madeleine Hawcroft, sound design by Sean Holden. The executive producers are Grace Pashley and Kellie Reardon. The production manager is Ann Chesterman.

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Bonus episode: supporting a loved one with dementia

Helpful resources and tips for families impacted by dementia, from National Dementia Helpline staff.

Hold the Moment podcast S01E07 bonus: supporting a loved one with dementia

Transcript

[Beginning of recorded material]

Jim: A dementia diagnosis can be daunting, not just for you, but for your family too. I think constantly about how my diagnosis will impact my children and their children. I'm Jim Rogers and I have younger onset Alzheimer's. Welcome to Hold the Moment. It's a podcast from Dementia Australia, full of stories about life after diagnosis. Dementia Australia has some really great resources on its website for families and carers. They even have a free specialist counselling service for families grappling with younger onset dementia. We also have an entire podcast episode on the impact dementia can have on families. You can download it right now in your podcast app, but this short episode features expert advice from the National Dementia Helpline. They're available 24 hours a day, every day of the year. If you call, you'll speak to an advisor, just like Kristin.

Kristin: I'm Kristin, an advisor on the National Dementia Helpline. When you call us, you'll speak to someone like me. We're a free service and we're open to anyone. People living with dementia, their carers and families – even children under the age of 18 can give us a call. Family relationships can be complex. When there are multiple people involved in caring for a loved one who's living with dementia, there can be different opinions about what the right thing to do is. It can be helpful to reach out to a place like Dementia Australia to receive more information and understanding, to help create a path forward that everyone can agree to, even if it isn't their first choice. It can be difficult when you're caring for kids and you're caring for a loved one who has a diagnosis of dementia. What are you meant to tell the kids when they ask all the questions that curious kids have? You can always give us a call on the helpline. We can talk you through some ideas. And there's a fabulous website that Dementia Australia offers, called Dementia in my family, that has information for kids of all ages, and has a video that I love where kids talk about what it's like to have a loved one in their family living with dementia. It can be hard to know how to best support your loved one who's living with dementia. You might wonder if you should be going to all of their appointments with them. Really, that's something that's individual for everyone.

A lot of people find it helpful to have someone come along so that they can just listen to their health care professional and their helper-person, whoever that is, can write down notes, ask questions that they might have had ahead of time, maybe even help with things like getting you to and from the appointment. When someone in your family is diagnosed with dementia and they don't live close by in the way that you traditionally think of caring for someone, there are some ways that you can still help and care from a distance. You could contact the National Dementia Helpline for some ideas, but a couple of tips are things like helping out with booking appointments, taking care of scheduling things. You could order groceries to be delivered. You could order arrangements of flowers, or anything to brighten someone's day. You might wonder what kind of supports would be available for your loved one who speaks a language other than English. You can contact the National Dementia Helpline, through the translation and interpreting service, where you're able to access our supports in the language that you are comfortable with. When you're diagnosed with younger onset dementia – which means you're under 65 years of age – you might have a lot more going on in your life, and it can be helpful to seek support, not just for you, but for your family members as well. Dementia Australia offers a family engagement program, which is a free support service for you and your family. Everyone responds differently, which is why it can be helpful to find supports. It might be in your cultural community, in your spiritual community, your friends, family – or you can always call Dementia Australia. Whatever your age, Dementia Australia is here to support families.

Jim: The helpline is not just for people living with dementia: it's for their families and carers too. If you've got any questions about anything you've heard on this episode, just contact the National Dementia Helpline on 1800 100 500. Their trained advisors are available 24 hours a day, every day of the year. Don't forget, there's lots of episodes of Hold the Moment for you to explore right now. The series is designed to help you with lots of issues you might be facing, whether it's getting your affairs in order after a dementia diagnosis, adjusting to new exercise or sleep routines or advice on getting around town and travelling. Make sure you or a family member helps you hit ‘follow’ on Hold the Moment, because we've got a new series coming soon. It's focused on carers and family members. If you hit ‘follow’ in your podcast app, you'll be alerted when our next series comes out. This episode was produced by Deadset Studios for Dementia Australia.

[End of recorded material]