Episode: Where to from here?

What to do after being diagnosed with dementia

You, or someone you love, has just been diagnosed with dementia … what happens now? Hear how people living with dementia handled their diagnosis experience, and how they found a positive way forward with the help of friends, family and Dementia Australia.

Hold the Moment podcast S01E01: Where to from here?

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.

[Background noise of an office environment with phones ringing, muffled sounds of people talking.]

Jim: I think generally, I have always been, you know, very focused on trying to get ahead in life. So always been involved with property and very busy lifestyle, renovating properties, building properties.

Hamish: This is Jim Rogers, he worked in the fast-moving world of residential property.

Jim: So it was a very busy environment, very full-on, big team environment, a lot of responsibility, a lot of information to process: daily. It was full on, but that's the way I like it.

Hamish: As you can tell from his accent, Jim's originally from the UK, but relocated to Australia in the 2000s.

Jim: Yeah, the offices that I worked in were amazing: very busy, very bubbly, great team atmosphere, a lot of people, a lot of phones going, a lot of meetings taking place.

Jim: First started noticing the symptoms at work - often in meetings, or when I'd forgotten that I'd met people. Some colleagues were noticing that I couldn't recall meetings, couldn't recall instances where I chatted with various people: as though I'd gone and had a face-to-face meeting with that person and then suddenly, you know, I have no recollection of them. It was quite daunting to me. And I just felt a little bit overwhelmed as to what, what's happening. I was starting to think is the, you know, some side effect - I was having a medication for high cholesterol, and I was thinking: “is it a side effect of that?”, and I was researching stuff like that.

Hamish: So Jim said to his GP…

Jim: “I'm having issues: getting confused, constant fogginess.” People were talking to me; sometimes I felt as though the conversation wasn't registering correctly in my head. And it wasn't till much later, at some point, I went for a cardiologist appointment.

Receptionist: Ah, Mr Rogers, the doctor will see you now.

Jim: The cardiologist sat me down in the room and started to do whatever she was going to do. You know, they do heart rate or whatever it is they're going to do. [Sounds of test equipment being used.] And my phone was ringing. [Sound of phone ringing.] And it was annoying, because it was ringing and I couldn't work out how to put it on silent or turn it off. So anyway, the call stopped and I sort of left it and then [sound of phone ringing] it rang again. And she said, you know: “Just turn your phone off.” I got all flummoxed and stressed because I couldn't do it. And I just couldn't work it out. And I ended up asking her: “Can you, can you, tell… how do you…?” And she, she wouldn't. And she said: “It's fine. Take your time. And just see if you can work it out.” [Sound of phone ringing.]

Hamish: The cardiologist said to Jim…

Jim: “Are you experiencing this sort of thing now and again?” And I was saying: “yes, like these are the weird things that are happening.” And from that point, she then referred me to a memory clinic, who started doing more advanced testing.

Hamish: Next thing the neurologist’s office calls Jim.

Jim: And they did say to me: “Would it be possible for your husband Tyler to be there with you, for that meeting?” Which sort of triggered my mind a little, thinking, you know, sometimes when they say “can that person be there with you?” maybe it's not good, you know, but you still don't expect it and I was truly hoping that they were going to say: “Look, you've got some sort of cognitive issue. We can do this medication; we can do this. Let's get this damn-well sorted.”

Hamish: But instead, the neurologist said:

Jim: “We've reviewed your PET scans etc. Unfortunately, we can see that you have younger onset Alzheimer's.” [Music plays.] It was almost an out-of-body experience. I just - it's as though time stood still.

[Sound effect of something whizzing past.]

Hamish: This is Hold the Moment, a podcast from Dementia Australia, full of real stories about life after diagnosis.

Jim: Because I've never met anybody with Alzheimer's, I didn't know anything about Alzheimer's. I didn't want to know anything about Alzheimer's. So it was pretty hard to hear those words.

[Music plays.]

I'm Jim Rogers. I'm 57 years old, and I'm living with younger onset Alzheimer's.

Hamish: And I'm Hamish MacDonald. Across this series, we're going to be covering a handful of the big changes that come along with a dementia diagnosis. Things like your sleeping habits, your close relationships, your exercise routine, how you travel around town, or even further afield than that.

Jim: And along the way, you'll meet a whole lot of people living with dementia, who are tackling these issues. In this episode, though, we're talking about where it all starts: with your diagnosis. I'm going to tell you a bit more about my own diagnosis. But Hamish also has a very personal connection to dementia.

Hamish: Yes, so I've interviewed lots of people with dementia in my work as a journalist, but all of this hit much closer to home when my Dad was diagnosed a few years ago with Lewy body dementia. He'd been diagnosed previously with Parkinson's disease. And I guess it was a bit of an evolution from there. So, Jim, it really does sound like you've been on quite a ride, my friend.

Jim: Yeah, you could say that Hamish, you could definitely say that.

Hamish: But the ride didn't exactly start with your dementia diagnosis. Can you just tell me a bit about your life, up until now or until that point?

Jim: I was married to my wife for nearly 10 years. And we had a great relationship and three beautiful kids from that. And unfortunately, my wife passed away from cancer, which was a terrible time. Then sometime later, when I met Tyler, I just had a connection with him. And yeah, things just happened from there. He's been in the children's life for over 20 years now. So they very much are used to having Ty in the family. And, so yeah, he's ‘Poppy’ to the four grandchildren. And very lucky.

Hamish: You're obviously someone that throughout your life had exercised a lot of control over your own destiny: you'd moved countries, you'd build families and businesses and buildings and homes. Confronting a situation where you kind of couldn't really seize control in that way, how did you handle that?

Jim: I remember - even with my wife at the time, when, when she was diagnosed with her cancer - and they sort of said: “Go away and try and, you know, we think we think you'll be okay, but move along and try and enjoy life.” And I remember her desperation at that and how quickly she passed away from there. And I think when you've watched that with somebody as well, it's very daunting to have the unknown: you don't really know that there was no rulebook.

Hamish: And could they give you those timelines?

Jim: Not really, because the one thing they really emphasise to you is that everyone is different. Every single person with dementia has a different story to tell. There's a lot of that anxiety that goes with it, I think, and you just, you don't want to really, you just don't want anything to do with it, you know. I just wish I'd never heard of it. Wish I'd never been diagnosed with it. Just don't really want to know. But it's there now, the elephant’s in the room. So, you try to just turn it into a positive and go okay, well, I've got this future ahead of me now. Utilise the time, make the best of it, have fun, be positive, try and fulfill all those things that you thought you could put off till your later years. Bring them forward a bit.

Hamish: That initial 24 hours after you got the news, was a big 24 hours in in your life and the life of your family.

Jim: [Laughs.] It was!

Hamish: Why?

Jim: Because we were desperately waiting to find out news, what was happening with my daughter Daisy and Mario, her partner. They were having their first son. And so, you know, we were on the sidelines. They were going into the hospital, ready for her to give birth to their son. And so we had this diagnosis the day before she gave birth. So of course, it was a very emotional time to have a new grandson. But in the background, it was also very difficult because you had this diagnosis that was being put on the table. And so we really had to try and park that and focus on the joyous time, not, you know, what was happening from that side of things.

Hamish: Could you?

Jim: Yeah, I think so. Yeah, we did, because it was so exciting to see a new baby and go in and hold him and see them and know that she was safe, and that it was all - and then sort of after the event, then when we came home, the severity hit us again, and especially in the quiet of night, when it's the early hours and stuff it really started to become an impactful on “What does this mean? What does it look like?” Of course, ‘Dr. Google’ isn't the greatest place to go and look, but you start to see all these things that are happening to people and you know, you draw on their experiences to see these people who've gone from being perfectly fine, to unable to, you know, look after themself, care for themself, make decisions, those sorts of things. It's pretty scary. Scary territory.

Hamish: What strikes me, Jim, is that it was actually your cardiologist - a heart specialist - who had picked up on your symptoms and not your GP. What do you make of that?

Jim: One really prevalent thing that happened with the GP was after the diagnosis, Ty and I went to the GP for something afterwards. And I said to the GP: “I've been diagnosed with younger onset Alzheimer's”. And he was quite surprised, and he was reading the notes and stuff. And he actually said – which we couldn't believe – during that conversation: “Oh, well, it's not like it's gonna kill you.” Which we were both really gobsmacked at the time, we jaw-dropped and, and felt as though he really wasn't sure about that area at all. And since, you know, of course, we know a lot of stuff now. But at the time, it felt a little trivialised by the GP. So you, you feel sorry for people that are trying to get to a diagnosis, if they're facing that type of thing. I do think sometimes, there is a lot to do with Alzheimer's and dementia that a lot of generalised practitioners don't really know about, you know. And of course, as we know, it does lead to your death at the end of the day.

Hamish: You were diagnosed with younger onset Alzheimer's. What does that mean?

Jim: So basically, anyone diagnosed prior to 65 is classed as ‘younger onset’. So usually Alzheimer's is associated with the ageing population: somebody that's getting older, and their brain is degenerating slowly. It's something that's found early on. So yeah, a form of younger onset is literally Alzheimer's that starts at a time in life, when you should really be at the top of your game, working, or with a family or, you know, a busy life. It's not at the time of life, when you would generally assume it happens, when you're older and you're quiet. So you sort of become older, quicker.

Hamish: And do you feel like that's what's happened for you?

Jim: Yeah, I feel as though I'm fighting to just stay who I am and stay full of vitality, and you know, have plenty of conversation and meet people and be upbeat, but I feel in myself I get lethargic, I get overwhelmed, tired and sometimes can't focus so well. Or if there's too many people talking, I struggle to focus. So I feel all these things. And last night we went to the theatre. By half-time, I seriously just wanted to go home and go to sleep. I feel as though I'm at the stage where you push - you’re pushing because you want to make the most of what you have right now, before you can’t have the option to push.

Catherine: My name is Catherine Daskalakis. I am: I forget how old I am sometimes.

Hamish: I think you're 57.

Catherine: I’m 57, yes. I'm 57 years old. I have a daughter, called Victoria. I have a husband, Steven. I have two sons: one’s Anthony and the other one is? Oh my goodness is, is Anthony and John, Johnno, Jonathan. Yeah.

Hamish: Anthony is the younger one?

Catherine: Yes! I forget their names!

Hamish: That's alright. That's fine.

Catherine: Oh my God.

Hamish: You got it.

Catherine: I have been diagnosed with Alzheimer's.

Hamish: And I know you loved your work. Tell me about what you did for your career.

Catherine: I have been working with kindergarten kids for many years and overseas in Singapore. And it was just the love of my life, yeah.

Hamish: What is it about teaching that you loved so much?

Catherine: I just love, you know, like, I love the kids. I love getting them to a point where they're, like, independent and just, you know, it's just, it's just beautiful. Yeah.

[Sound of someone calling out in the background.]

Yeah.

[Catherine laughs.]

I know a lot of people say that to me. It's like: “How do you do it?” You've got to…

Hamish: You’ve got a big heart.

Catherine: Yeah, you can either be a kindergarten teacher or you can't.

Hamish: Yeah.

Jim: When did you first start noticing the symptoms in yourself?

Catherine: I've been driving my whole life. And all of a sudden, I wasn't driving properly. Oh, that's okay. I'll, you know, the next day I'll be fine. Had an accident, two accidents. And then I realise: “This is, this is not right.”

Hamish: Tell me about the first car accident that you had.

Catherine: Okay, so it was on my way home. And I was driving, and then suddenly, I heard this [makes a short hissing sound]. I didn't even know what happened. I don't even remember now. [Music and the sound of footsteps.] I was like, in shock. All these people came and they were asking me: “Are you okay?” And then Victoria actually came and she said: “Are you okay Mum?” She was coming home from work. And I said: “No.” I said: “I don't know what's happened.” I did not know what happened.

Catherine: So, I think I just didn't see the car. I just smashed into a car in front of me. But thank God, it was a car that wasn't – not driving. It was a parked car.

Hamish: And the second time?

Catherine: The second time, oh, gosh: I've… I got lost. I used to work at an independent school in - not too far from here. And I was going, coming home. And then all of a sudden, oh my God, I said: “I'm on the Anzac Bridge!” And I was calling Victoria, I was calling Steven, I was going “What do I do? Where do I go?” I ended up at Vaucluse. I don't know how – I don't even know how that happened.

Hamish: Right. You were a very long way from home.

Catherine: Yes, a very long way from home. And that's when I realised, something is not right.

Hamish: Was it your peripheral vision that was not there?

Catherine: Peripheral, yes. I always get stuck on that. Yeah. Is… I had no idea. I just thought, you know, maybe it's just that my eyesight is getting a little bit you know, old. I'm getting old. And, but that sort of started to, you know, that's what, that's what it was.

Hamish: So it took a while for you to reach a diagnosis of dementia. In fact, you thought your symptoms were something else entirely.

Catherine: I just thought it was menopause. Right from the beginning. It was like yeah, that's what happens. This you know, this is the time of my life that this is what happens. Not in my wildest dreams did I think that I have, I was, it was Alzheimer's. I still don't. I'm still like…

Jim: What would you – I fully understand that, because there’s a denial in the whole thing. You sort of feel like: “Is this really happening?” You keep sort of questioning it, but what would you say were a few of the key things that you noticed that were signs that you put down to the menopause, that you sort of thought “this is odd”, but then you know, when you keep bluffing it off and thinking “yes, okay”, but what would you say some of those were?

Catherine: Forgetfulness: a lot of forgetfulness. I would rely on my family to, you know, give me the words. “What was that again?” I'd say to my husband: “Come on, tell me what is it again?”

Jim: It just drops.

Catherine: I just really, yeah, just drops. That was probably the main thing, like the forgetfulness and anxiety. I've never, ever, had anxiety all my life – till now. Yeah. Till now: even, it's getting better now. But till, when I got the diagnosis, that was like, yeah, horrible.

Hamish: What shape was this taking, the anxiety? What circumstances were you finding yourself feeling anxious?

Catherine: Any – everything: like going to the shops, or obviously, driving. Like even writing things down, like using my iPad or whatever. I was nervous about doing that as well, things like that, that I'd been doing for years.

Hamish: You were seeing a psychologist around this time. What was he noticing, that you maybe hadn't yet?

Catherine: I wasn't sure exactly what was going on. I couldn't, you know, I couldn't work properly. I couldn't rely, you know, I was relying on everybody as well. So, yeah, it was that time when that he said that he thought it was the, you know, the one that…um.

Hamish: I think it's called frr…

Catherine: Frontal. That’s it.

Hamish: Frontotemporal dementia.

Catherine: Yes, yeah, yeah.

Hamish: Which is what Bruce Willis…

Catherine: Yes.

Hamish: …is living with.

Catherine: Yes. That's how I remember it. And that's what he thought and I, and I just sort of like: “Hmmm, no, that doesn't happen to me”, you know. “I'll be fine.” And then we went to do the PET scans.

Hamish: Do you remember Catherine, getting the diagnosis? Like, what did the doctor say? How did it register with you?

Catherine: It wasn't very nice. When, when… she's a lovely, lovely lady. But when we got there, and he's, she said: “It's Alzheimer's”. And when you don't even know exactly what Alzheimer's is, or, you know, you didn't even think that that could even be, you know, something – a possible, possibility. She just said: “You've got... yeah, it's Alzheimer's”. That was it. That was it.

Jim: That is such a devastating blow and to be put across so easily and quickly, is just… but life-changing for you.

Catherine: Yeah. Yes.

Jim: And who was with you at the time?

Catherine: My husband. Yeah. And I just cried and cried: went downstairs, to the um… we all stood in the hospital. But I just cried and cried and cried and cried and cried. And I still just didn't believe.

Jim: Devastated.

Catherine: I was yeah, devastated. It was like, the worst thing that could have ever have happened to me.

Hamish: In your mind, is there a good way to deliver this kind of news?

Catherine: Because I was talking – we were talking about it last night, you know, because I, she's such a, she's a lovely, lovely neurologist. But I wouldn't know how she would do it any other way. But it was very much like: this is what you've got. See you later. But you know, what is she supposed to say?

Jim: What is she supposed to say? This is the trouble.

Catherine: Yeah, exactly. Like, imagine how hard it is for her that I'm like, crying, like nonstop. My husband's crying: we’re all crying. You know, it was just I think it was just hard to… I just needed something more. I don't know what it is. And it's not her fault. I just, yeah, I felt that was the end of my life. I felt like: “That's it.” Because I didn't really know much about Alzheimer's.

Hamish: Is there a way that might have made that more digestible for you? Are there other services or other supports that could have been included in that?

Catherine: Yes.

Hamish: Or even, you know, you being pointed in a direction for more help, or…

Catherine: Yeah.

Hamish: Someone else there, to be part of a consultation like that?

Catherine: Yeah, maybe something like that.

Jim: I think it'd be nice if the diagnosis came with somebody to assist you after the diagnosis.

Catherine: Yeah. Yeah.

Jim: So if you could be perhaps, somebody explain it to you. And they say: “Okay, before you leave, we'd like you to sit and talk to whoever”, and they sit down and say: “Listen, this is going to feel like it’s the end of the world, but, this, this is what can happen. And we can lead you to this support group or whatever, and you will overcome it, but you're gonna feel a feeling of sadness and grief.

Catherine: Yeah, I think that would have made a world of difference.

Jim: And I think if they had somebody who had been diagnosed previously…

Catherine: Yes.

Jim: Who was maybe not a counsellor, but somebody who could go: “It's okay, like, you will be okay.” And that would be huge.

Catherine: That would have made a big…

Catherine: Yeah, definitely. So yeah, it was just hard to believe that I – that I – have Alzheimer's. I'm always like, you know, I was on top of everything: my kids, so independent. That's changed a lot.

Hamish: How did you move beyond that thought?

Catherine: Um: slowly, slowly. You know, I think with the love of my family and the support that I have, um, you know, slowly, slowly.

Hamish: I can see though, even today talking about it, you're getting a bit teary.

Catherine: Yeah, yeah.

Hamish: Can you describe what it is that is scary for you?

Catherine: I don't think about what's going to happen to me. I don't think about that. But what I do think about is my independence. That's the number one thing.

Hamish: What do you think about your independence?

Catherine: I just, I don't want it to go.

Jim: Don’t want to lose it.

Catherine: I don't want to lose it. Yeah. Yeah and I do get - that's what makes me teary, out of everything.

Jim: It's the anticipation.

Catherine: Yeah.

Jim: Of what's coming down that road. That's how I felt when I was diagnosed. It was as though, when you look down the road at what's coming, we all know what's coming. And so it's, you have to pull yourself back.

Catherine: Yeah.

Jim: To keep away from what's ahead.

Catherine: That's right.

Jim: Can I just ask you, if you take us back a little bit to when you were diagnosed, to the few days, sort of after the event? How did you feel in yourself? Like, how did you change from the day you walked into that hospital? And the day after? Because I know for me, it was devastating. How did you react?

Catherine: It was like, everything was taken away from me.

Jim: Yeah.

Catherine: Every little bit. And it's like, how am I gonna get back? I didn't want to talk to anyone. Even my sister, my sister-in-law – I didn't want to talk to anyone. And they're like: “But we're, you know, we're there for her, you know, we want to see her” and I said to my husband: “I don't want to talk to anyone, for a long, long time”. Which is weird, because I'm not that kind of person. But I became that person.

Jim: I think you shut down so much. Like you internalise the feelings, like you've just got to process it, on your own.

Catherine: Yeah.

Jim: First.

Catherine: Yes.

Jim: Before you can sort of figure it out; how to deal with what you're going through, but nobody can really help you.

Catherine: Nobody.

Jim: It’s very singular.

Catherine: Yeah.

Hamish: Catherine, who was the most difficult conversation to have this with?

Catherine: Probably my younger son. He's like: “There's nothing wrong with mum. There's nothing wrong. She's fine. Look at her. She's fine.” He was – yeah – in denial. And I still think he is, because he's like, my… you know, I'm ‘super mum’ to him. So, and I am. I am.

Jim: And you’re his world, you know.

Catherine: Yeah.

Jim: So it must be terribly hard.

Catherine: Yeah.

Jim: For him.

Catherine: Yeah.

Hamish: What's it like? I know, you're saying that your independence is really important to you. What's it like needing to turn to your kids for that sort of support?

Catherine: So hard.

Hamish: Because you're the parent.

Catherine: Yeah. So hard.

Jim: The thing is, we...

Catherine: It’s like we’ve gone back.

Jim: Yeah. You’re almost role-swapping.

Catherine: Yeah.

Jim: You don't want that.

Catherine: No.

Jim: You know, because you want to be the parent.

Catherine: Yeah.

Jim: And you’re used to… I do that now with mine; mine are all grown up. They’re 30, 31, 32. And you don't want children to worry about you.

Catherine: Yes.

Jim: You want to be the one that's the carer, or the supporter of them, you know. Because they're the young.

Catherine: Exactly, yeah.

Jim: So you know, it's very hard if you feel as though – not a burden, but you feel that they don't want to do that. You just want to be you.

Catherine: Yeah, yes.

Jim: And just carry on.

Catherine: And your kids, you just want to be there. Your kids. Even with Victoria. Like she's, she loves cooking. So she's, I love cooking. And that's something that I've, I don't know, I can do it. But I just don't want to do it at the moment.

Hamish: Really?

Catherine: Yeah.

Hamish: So that's been a big change, for you?

Catherine: Big change. I love cooking. And that's where she's, you know, she's got that from me. But she's, um yeah, I said to my husband, there is no way that I want any of my kids to be support workers or anything like that. They're my kids.

Jim: No.

Catherine: There is no way that I would want to do that to them. So that's something that we said to the kids and to my husband.

Hamish: When you were first diagnosed, I know you spent a bit of time talking to your own brain. Is that right?

Catherine: [Chuckles.] Yep.

Hamish: What did you, what conversation did you have with your brain?

Catherine: I just wanted to know why? Why? I've never even noticed about anything about my brain and then all of a sudden, this happened. And it's like: “Why, why did, why did you do this? Why? What have I done? What has made you, you know, do this to me? You should have given me like a bit of a like a…”

Jim: Warning.

Catherine: “Like a warning, yeah.” Because I never, ever, thought anything about my brain.

Hamish: Were you angry with your brain?

Catherine: Probably. Yeah, yeah.

Hamish: Did the brain talk back?

Catherine: [Chuckles.] Yeah. No, it doesn’t!

Hamish: It doesn’t really?

Catherine: It doesn’t.

Hamish: And you still do that at all? Or…?

Catherine: No, I don't do that anymore. I trust my brain now.

Hamish: Yeah.

Catherine: Yeah, I know. It's a bit silly, but that's something that I, yeah. One of the things that I felt.

Hamish: The way you talk about it, it sounds like you're more comfortable with your diagnosis now.

Catherine: Yeah.

Hamish: Can you describe how you feel about it today that's different?

Catherine: I've sort of learned how to use my independence now. Apart from my support worker. Sometimes I feel that I don't have a diagnosis. That's how – I feel there's nothing wrong with me.

Jim: Yes.

Catherine: Do you ever feel like that sometimes?

Jim: Yes, I absolutely do. And I actually convince myself sometimes. Then you feel like a fraud – almost. Do you think?

Catherine: Yeah, yes. Yes.

Jim: It's like, there’s fine line.

Catherine: Yeah.

Jim: And then sometimes things happen. And you think: “hmmm, yeah, this is odd”.

Catherine: Yeah.

Jim: And then other times you think: “no, I'm absolutely fine”.

Catherine: Yeah.

Jim: I think there's just a lot to take in and a lot to absorb.

Catherine: Yeah.

Jim: After your diagnosis, to sort of get your head around everything.

Catherine: It takes a long time, doesn't it, to actually deal with it?

Jim: Yeah.

Catherine: To understand, okay, this is what, this is what I have, and this is what I have to, you know, I see it as a - what's that word? Like? You know, when it's a good thing?

Jim: Yes, you've turned it.

Hamish: One of the things that you are doing is, you've started an Instagram account…

Catherine: Yep, yep.

Hamish: …to document your experiences. Why have you done that?

Catherine: That was just really important because – to me – because I felt that I wanted to share my story – I was ready to share it, because there's so many good things about what we're going through as well. And if I could just give that one person a bit of hope, I've done my job.

[Music plays.]

Jim: So you, or someone you love, has been diagnosed with dementia. If you're not sure where to turn next, you can call the National Dementia Helpline. They're here to help.

Kristin: Hi, I'm Kristin. I work on the National Dementia Helpline as an advisor. On the helpline you can give us a call with anything that you're thinking about and we'll have a chat with you about whatever's on your mind. If you've just received a diagnosis of dementia, you can feel really alone and isolated. You don't have to tell anyone that you have dementia, if you don't want to. You might also find, as you go, that it's helpful to let the people that you love, know. Often the people that we love want to help us. And if we're able to be clear about what's going on for us and honest about what's going on for us, it makes it easier for our loved ones to be able to help. If you're not sure how to start the conversation with your family and friends about your diagnosis of dementia, there are services and supports that can help you get started with that. Sometimes the hardest part is saying: “I have dementia”. If you want to talk about anything you've heard in this episode, like what to do once you've been diagnosed with dementia, you can contact the National Dementia Helpline on 1800 100 500. We're on the other end of the line 24 hours a day, every day of the year.

Jim: Hold the Moment is a podcast from Dementia Australia. It’s produced by Deadset Studios. You can find more episodes and resources through the Dementia Australia website www.dementia.org.au. And don't forget to follow Hold the Moment in your podcast app, so you don't miss an episode. The show is hosted by me, Jim Rogers, and my good friend, Hamish Macdonald. Executive producers are Kellie Reardon and Grace Pashley. The producer is Liam Reardon; sound designed by Sean Holden. Special thanks to the whole team at Dementia Australia and to all the advocates who have shared their stories on this podcast.

[END OF RECORDED MATERIAL]

Bonus episode: dealing with a dementia diagnosis

Helpful resources and tips for coming to terms with your diagnosis, from National Dementia Helpline staff.

Hold the Moment podcast S01E01 bonus: dealing with a dementia diagnosis

Transcript

[BEGINNING OF RECORDED MATERIAL]

Jim: Receiving a dementia diagnosis can be one of the hardest and most overwhelming conversations you'll ever have. But it's also just the first step. I'm Jim Rogers. This is Hold the Moment: a podcast from Dementia Australia. We’ve got a whole episode which tackles the issue. It's free to download in your podcast app right now. Just ask a friend or family member for help to access it. This bonus episode is full of specific advice on dealing with diagnosis. If you, or someone you love has dementia, and you're not sure where to turn next, you can call the National Dementia Helpline and chat to an advisor. You can get advice on questions such as what to ask your GP, or how to actually tell your loved ones: “I have dementia”.

Kristin: I'm Kristin, an advisor on the National Dementia Helpline. When you call us, you'll speak to someone like me. We’re available 24 hours a day, every day of the year. We're a free service and you can talk about anything that's on your mind. Getting a diagnosis of dementia earlier means that you've got more access to the services and supports that can help you plan and enjoy your life. If you notice some changes with your memory or your perception or your mood, and you're wondering if it might be dementia, there’s a checklist that Dementia Australia has that you could go through and have a look and see if the things that are listed there are things that you have also noticed changing for you. Some people find it helpful to fill out the checklist and take it with them to the GP. If you're worried about changes to your cognition, and you're wondering if your memory is changing, there's an app that you can use called BrainTrack that lets you play a few games over time. And it will keep track of how you do on those games and let you know if it's noticing any changes that would be worth talking to your GP about. It's free and easy to download. You can get the BrainTrack app from your app store. You might have heard people say: “Why even bother getting a diagnosis? There's nothing you can do anyway.” That can feel a little bit helpless. And it's not exactly true. There are many things that you can do to live well with dementia to slow down the progression, feel good and have a bit of fun along the way. Talk to your GP; give the Dementia Helpline a call. There are ways that you can live well with dementia. After you've been given a diagnosis of dementia, you might wonder: “What does that mean? Who's going to help me with this? How do I find out more about living with dementia?” It's a great time to get in touch with Dementia Australia through the National Dementia Helpline to talk a bit about anything on your mind: questions you've got, worries you've got and get connected to Dementia Australia's services. We have a number of different programs to match what your needs are: from living well with dementia to getting connected to another person who's living with dementia to have a chat. If you're not sure how to start the conversation with your family and friends, there are resources and people who can help you start thinking through what you want to say to your loved ones. Dementia Australia offers a number of services and programs including the helpline that you could get in touch with, to help you start thinking about what's most important to share with your loved ones and how you want to say it. Sometimes the hardest part is saying: “I have dementia”.

Jim: 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.

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