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.
[Music plays, owl hoots, frogs croak.]
Jim: Oh. I've been awake since 2.30. Probably before then, but I had such vivid dreams. It's excruciatingly annoying how you wake up to these dreams that have sort of flashing lights in your brain, and images and things going on in your head. It's so hard to explain, but it's like watching a video on fast forward. You get to a point where you've just got to get up and get out of bed and go upstairs, make a drink and try and you know, distract yourself. You learn to live with it. But it really weighs heavy on you. It's tiring. And it's hard.
Hamish: Like lots of people living with dementia, Jim struggles to get a good night's sleep, though there are some things that help.
Jim: So yesterday, I had a sleeping tablet before I went to sleep. So I get really excited about that. It's the best day of the week for me. I do it a couple of times a week. And yeah, this morning, I've woken up at 5am. I've had literally a full night's sleep, so feel really revitalised and ready to start the day. So, it's so good when you do get that sleep. It's just, it's just the best.
[Music plays.]
Hamish: But even the sleeping tablets are not a silver bullet.
Jim: My neurologist prefers that I don't take too many sleeping tablets. One, because they become less effective. And secondly, the medication that I'm on for my brain for Alzheimer's is counteracted by the sleeping tablets, so that just doesn't help. So you have this relentless reoccurrence of bad sleep, bad sleep. There's no such thing as a full night's sleep
[Music plays.]
Hamish: Jim. I'm curious before you got your diagnosis with younger onset Alzheimer's, were you a good sleeper?
Jim: Oh yeah! I was a great sleeper. I used to, you know, generally get six, seven hours a night, quite happily.
Hamish: All that beauty sleep.
Jim: There you go: doesn't come from nothing. This is Hold the Moment a podcast from Dementia Australia full of real stories about life after diagnosis. I'm Jim .
Hamish: And I'm Hamish . My dad has found sleeping super-complicated since he's been diagnosed with Lewy body dementia. He'd been diagnosed previously with Parkinson's disease. There's a whole range of flow-on effects from that as well. Energy levels, cognition, heaps of stuff. Later in this episode, you're going to hear from a neuroscientist about why the nights can be so long when you're living with dementia. Plus, some tips to get you through to the next day.
Jim: But first, let's meet Ann, whose symptoms can cause some pretty strange things to happen in the night.
Ann: Hi, I'm Ann. I'm 71. I'm living with Lewy body dementia, and I believe I'm living well with it and try my hardest to get the best out of every day.
Hamish: Sometimes the nights, not so great.
Ann: That's why I said the days.
[Shared laughter.]
I live with my husband Timothy who is very supportive and we try and live as well as we possibly can.
Hamish: We're here to talk about sleep. But how does a rough night's sleep impact your days, Ann?
Ann: I find that you get up in the morning and you know I might then go back to bed after breakfast for a little while. I try not to sleep during the day, but it's almost being constantly tired. And so it's hard to do more than one thing in a day that requires too much, you know, a bit of grey matter movement and thinking. But I don't think I have slept through a night for - well, I couldn't remember when. But I've got dementia, so I wouldn't know anyway.
[Shared laughter.]
But, for example, last night, I had a terrible night. I had one series of dreams. And that was a bit, I get very, oh, I move a lot and hit Timothy. And he's quite used to it. He bears the bruises well, but then I went back, I was awake for a while. And it was about three o'clock. And I had this terrible feeling that there was a noise outside: a lot of noise outside. And I thought I heard a gunshot. I thought I said to Tim: “Can you get up and check that?” and I thought I saw him get up. But he hadn't moved at all, I noticed. Anyway, I, I thought I got up – well, in my dream or hallucination state, got up and went outside and checked it - and we're staying in a hotel. And across the way, I thought that that was where all the noise was coming from. There were three women out there. And they're all sort of fairly fierce-looking. And one of them had a fork, and she started to walk towards me. And I said: “No, I'm just here to make sure you're all alright. Is everything okay? I'm a nurse.” You know, if somebody's bleeding and dying, I can look after them. And anyway, with that, they just sort of kept walking towards me. And that's when Tim woke me up. Because I talk a lot, also in my dreams. So I get very dry mouth and whatever. And then Tim had to re-orientate me to the room and tell me what, where we were, what the doors were, and, and so forth.
Hamish: So this hallucination you're describing, is it worse because you're travelling at the moment, you’re interstate for this recording? Does the unfamiliar environment make much of a difference?
Ann: No, it happens at home too. I'll wake up, well, I'll have an hallucination. I call them hallucinations, because I can see the people. And then I'll sort of say: “Where am I?” And Tim will wake me up and say - and I’ll say: “But where does that door go to? What's, but isn't that the - which house are we in?” Then he wakes me up and I'm back to normal. Well, what is normal? And then I, you know, stay awake for a while. It's hard to get back to sleep often. And generally I'm okay then. But sometimes I'll have another one as well.
Hamish: So do you have any of this stuff, Jim?
Jim: I have - I dream in fast-forward now. So you know, if you were to watch a movie, and you see it being -it's like that, so it's almost panicky when you wake. So I find it distressing in that dream state that when I do wake, I just want to get up, to get away from it.
When you were diagnosed - which is a while ago - were these dreams apparent at the beginning, or are they something that have progressively got worse, as time’s gone on?
Ann: Initially, I didn't have dreams. I had restless legs and -
Jim: Which I suffer from too.
Ann: Yes. And throwing around my arms and things. And the dreams came later. And that was probably something that was more significant with the diagnosis of Lewy body dementia. And my mother-in-law had Lewy body dementia. And she used to constantly say: “There are ants in the pantry.” Well, there weren't any ants in the pantry: we’d check. And there was a mouse that used to visit her. Well, it didn't. And Tim stayed at her place and slept in her bed to see what happened.
Jim: What it was.
Ann: And nothing happened to him. But in the morning, she said: “You didn't have to get up in the middle of the night and go to the door and answer the door when those kids were there. They just ring the bell and run away.”
Jim: Yeah.
Ann: We just realised there's something more going on than ‘ants in the pantry’.
Hamish: My dad is living with Lewy body dementia.
Ann: Aaaah.
Hamish: So he has terrible sleep issues. Bit disrupted sleep at night, but then sleeps a lot, sleeps massively during the day: sometimes all day. But he also has these very vivid hallucinations which are a feature - as I understand it - of Lewy body dementia, but they’re totally real to him. And we can have a very lucid conversation, which is largely grounded in fact and reality, and then it'll move in and out of him telling me stories of where he's been in the Bavarian Alps, or -
Ann: Yes.
Jim: So it’s a little bit of memory mixed in with the dream.
Hamish: It's very - from the outside - it's very hard to know which bit is real, and which bit’s the hallucination.
Ann: It is for us too, you know. It's very hard at times for me to think, did that really happen? Have I really been there? Or not? We all have different pathways with our hallucinations, if we have them, or our dreams and things. And I think you have to realise that we're not gonna - yours won’t be the same as mine, necessarily, Jim, but they could be.
Jim: Yeah.
Ann: Or they may not develop any worse, or whatever. But I think it's just a matter of recognising that that's part and parcel of what's going to be happening. And to be believed.
Hamish: How scary is it for you?
Ann: Oh, it can be really scary. I can, I mean, there was a time when I had this multimodal hallucination.
Hamish: Which means?
Ann: Multimodal means: multimodal. Different: [laughs] various types of forms.
Hamish: You can smell it, you can touch it.
Ann: And I can, you know, feel it and all that. And I can see it. And I can feel the bed, when somebody's sitting next - down, you know how the bed goes down?
Hamish: Yeah.
Jim: That’s so scary.
Ann: And I can feel that. The first time it ever happened, I was absolutely freaked out. And from then on, it developed into these other forms of feeling and seeing things and this other thing had been - I referred to it as a rude word, because it used to recur – and I called it ‘the bastard’.
Because this black, round thing, kept – like one of those exercise balls with its spikes on it – it kept sort of appearing in dreams and coming towards me and trying to – well I felt it was trying to scare me. And I thought, well, it would whoosh around in front of me. And one day, I thought: “No, I'm gonna catch you.” And I grabbed it and squeezed it. And it exploded into a whole mass of black, ethery, whatever – and just disappeared into the, into the sunset. And I thought, “ohhhh!”. You know, I was absolutely petrified doing it. But I thought: “Look, you've been driving me mad for nights. And I’ve had it.”
Hamish: And so when you're describing this to us now, is your memory of it still as real as -
Ann: Yeah.
Hamish: It was?
Ann: Yes, it is. It's almost as if it's happened again.
Hamish: Even though you know -
Ann: I know that it didn't. Yes, yes, exactly.
[Music plays.]
Hamish: The hallucinations Ann experiences won't necessarily happen for everyone living with dementia. But if they do, how the people around them react is really important.
Stephanie: It's very important for the carer not to dismiss that, because what's happening is very real to the individual living with dementia. It’s very important that the carer helps the individual living with dementia get through that and saying something - if they're having a conversation with their mum, to say: “Oh, your mum was a wonderful person. I'd like to speak to her too.” Or if there's something that's happening in the background - like the television, there's some violent program on television - get rid of that background noise, create a calming environment, distract the individual basically. So my name is Stephanie Rainey-Smith, I'm an associate professor in the Centre for Healthy Ageing at Murdoch University, and Alzheimer’s Research Australia.
Hamish: So Stephanie, what causes these hallucinations to happen?
Stephanie: It’s generally just the changes that are happening to the brain. So that the regions of the brain that are associated with understanding your surroundings, your environment and separating out from reality what's happening now from past events sometimes. And that can also happen, for example, when individuals get very confused and disoriented at night. They’re having a vivid dream. And then when they wake up, they can't distinguish between the dream and reality. So it can be very confusing and disorienting for the individual.
Hamish: Can you explain for me the connection between dementia and sleep? Is there an easy way of explaining the connection?
Stephanie: Well, what we know now is that there is what we call a bidirectional relationship between sleep and dementia. So we know certainly that as someone starts to develop dementia, problems with their sleep is one of the first complaints that they attend their GP with or their treating doctor. And in addition to that, as the disease progresses, sleep becomes worse. But we're also starting to understand that not only is it a symptom of the disease, but also in earlier life, poor sleep can increase your likelihood of developing dementia.
Hamish: Okay, poor sleep can increase your chances of being diagnosed with dementia.
Stephanie: Yes, we believe so. The evidence is certainly stacking up to suggest that that's the case.
Hamish: Can you tease that out? Like what sort of features of poor sleep might contribute? Do you know why?
Stephanie: So we know that sleep is really important for processing the information that you accumulate during the day. It's also really important for laying down memories in the brain, and also for restoration - as we know getting rest and repair. But also, it's very important for clearing toxins out from the brain whilst you're sleeping. And these toxins can accumulate during the day. And we know that some of those toxins are related to dementia. And for example, in the case of dementia due to Alzheimer's disease there’s a particular protein called beta amyloid that accumulates in the brain and kills the brain cells. And when someone is having poor sleep, if we liken it to a housekeeping system, there isn't enough time to sweep all the amyloid out of the brain: it starts to accumulate. And this creates a toxic environment that can contribute to death of brain cells.
Hamish: So aside from poor sleep, it seems like lots of dementia symptoms can be worse at night. What is it about the night-time that can exacerbate these things?
Stephanie: So in the case of dementia, there's something that's referred to as ‘sundowning’. And that means that in the evening, and at night-time, some of the symptoms seem to get worse, and they do get worse. And this can include things like pacing, agitation, problems with sleep, and also hallucinations. And some of the confusion and disorientation can be related to shadows. For example, as the light levels, natural light levels are dropping, shadows are created, and the brain doesn't know how to process those shadows. And it can create some anxiety and stress for the individual who's experiencing dementia. And also, at night-time when they wake up and they don't know if they've just had a vivid dream that they can't understand, and differentiate between the dream and reality. So that becomes confusing. And also if there's low levels of light in the room that they're in, it can be quite frightening. They don't know where they are straightaway, or they can't recognise things. Or even if it's a familiar environment, the way that things look when the lights are off can be very different. And all of that contributes to the confusion and disorientation.
Hamish: Do different forms of dementia impact sleep differently?
Stephanie: Yes, they do. So for example, with Alzheimer's disease, people have a sleep that's fragmented, so they can't stay asleep very easily. So sometimes they have trouble falling asleep. But once they're asleep, they wake up often. Whereas in other types of dementia, such as vascular dementia, people often feel excessively sleepy. So they might have a lot more sleep. Whereas in in dementia with Lewy bodies, people can complain sometimes of having something called REM sleep behaviour disorder. And that's when people act out their dreams. And that can be very confronting for the individual living with dementia, but also for their caregiver.
Hamish: It sounds very confusing, because all of these things seem to be perpetuating the other things, right?
Stephanie: That's right. It’s almost like a feed-forward loop. You've got the symptoms of all the hallmarks as you like, of the disease that are accumulating in the brain that contribute to the disruptive sleep. Then the disrupted sleep itself contributes to more of those hallmarks building up within the brain. And then you add on the complexities of the medications on top of that: it can be very difficult for individuals living with dementia to deal with and to cope with.
Hamish: So does this then cause or contribute to some of the other things that people living with various forms of dementia experience, like depression and anxiety?
Stephanie: So we know that sleep is really, really important for regulating mood. And there's actually something that's called ‘the misery cycle’, which is rather badly named, where it describes how mood and sleep are intricately related. And that's because the brain regions that are involved in controlling mood are closely linked to those that are involved in sleep.
Hamish: I mean, I know you're saying it's badly named ‘the misery loop’, but if you're living through it, presumably, it's a pretty apt description.
Stephanie: That's right and it's also no fun for the carer as well, who is having to deal with a loved one who is up at night, or acting out their dreams. It can be very distressing for everybody.
[Music plays.]
Jim: Ah. The misery cycle: I think I've felt that before. And I know Ann has too. Let's go and see what works for Ann to break that loop of bad sleep.
[Music plays.]
Ann: I do use sleeping tablets and generally can get off to sleep fairly easily. But it's the waking and then often lying awake, and just having to sort of know that, well I'm in bed, and I'm resting, so I can do some resting and relaxation, if I think of it. But it's a bit touch and go. If it's early enough in the night and I'm awake again, I might take another half a sleeping tablet or something. But a lot of people would deal with it differently. I don't have a set time for going to bed. I usually wait till I'm tired, because I don't really like the idea of sleeping at night, for obvious reasons.
Hamish: As in you’re scared about what might happen?
Ann: As in, yes, I'll never know if it's going to be a good night or a bad night. And so it's just – mine’s a bit trial and error.
Jim: It's a really sad thing to come to terms with, because we all sleep. I mean, Hamish, how many hours would you say you get as a very busy journalist?
Hamish: Seven, eight.
Jim: Seven, eight. And the thought of going to bed and not getting that sleep?
Hamish: Yeah.
Jim: And is it gonna be a terrifying night? Am I going to be exhausted? Are my batteries going to be charged so I can address what I've got to do the next day and deal all with all of that internally. It's frustrating.
Hamish: So do you have a strategy Ann for trying to get back to sleep? Or do you just accept that you're awake?
Ann: I accept I'm awake. And I don't think that's a very good strategy. But it's what works for me. I just know that I used to listen to the radio, but terrible night-time radio [laughter] and talkback and I thought “no, thank you”. And that sort of makes you more alert. And I don't want to be, I don't want to be stimulated. I want to be just left.
Hamish: Because you FaceTime family in the UK, right? In the early hours?
Jim: Yeah.
Hamish: That's something you do to cope.
Jim: Yeah. And that's quite difficult sometimes. Because if you’re up at those times, you can FaceTime. And then when you're not, they almost get reliant that you're going to be up in those hours, you know, and you're not. My sister rang me recently, I think three in the morning. And I said “it's three in the morning”, she said: “I thought you’d be up”. But I was, of course, asleep at the time.
Hamish: Do you notice that when you've had a really bad night's sleep, that it impacts the way your brain functions the next day?
Ann: Totally. Particularly, if it's a really frightening evening/night. I feel fuzzy the next day of, you know, things aren't as easy to accomplish as they were before. I won't feel like going out very much at all. A lot of what I do is forced, to go out because I know you have to. And you probably understand that too. Because you know, if you don't go out, it's not good for you.
Jim: I think it affects your mood as well, the next day, when you've, you know, you've been through a very tiring night. And, you know, perhaps you've got a big day or things on that day and you want to be fresh, or, you know, as you normally used to be. And now I sort of almost - not get panicky - but in prep for the day when I've got things to do, I really want to have that big sleep. So I have sleeping tablets occasionally through the week and I’ll pick them out to try and have the best night's sleep, to attack whatever it might be that's falling on a certain day. Do you find it affects your energy level a lot? And you have to sort of plan what you're doing, like this for example?
Ann: Well, I've got used to having to function on less sleep than normal. And it is hard to do the things that I do, because I do quite a lot for Dementia Australia. And I'm involved in a lot of committees, nationally and internationally, which is terrific, because I think that's great for my brain and I love it. But that's not always easy. And sometimes it's a real chore to get organised to do those things. And if you've had a bad night, it's quite likely that you're going to have to push yourself and so you can only do that one thing in that day. And then you sort of just flake at the end of the day.
[Music plays.]
Jim: I actually feel a lot better this morning, I woke up a couple of times in the night - was able to go back to sleep - but I feel a bit more rested. And I think that was because yesterday, I had a really good meditation yoga class with Matt, the yoga guy that I have lessons with. And it just seemed to help me feel more rested and a little bit more relaxed.
[Music plays and birds chirp.]
Hamish: Other than the occasional sleeping tablet, yoga and meditation can help Jim get a proper night's rest. Stephanie has a few other tips, you can try, too.
Stephanie: Things like making sure that your bedroom is at a comfortable temperature for sleep. Also ensuring that you might eat more at lunchtime and have a lighter meal closer to evening-time. As well as not having too much alcohol intake or caffeine. It’s really important to get exposure to daylight. And this is because when individuals are experiencing dementia, they actually have their body clock (which governs when they're awake and when they're asleep) can be quite confused. And so getting out into natural sunlight can help the body to understand when it should be awake and when it's time for sleep. And also undertaking some physical activity. Even just 10 minutes of being physically active a day has been shown to improve sleep. And if that's not helping, then it might be time to start looking at some types of medications.
Hamish: So just a bit of you know, constructive management strategy stuff. I know you mentioned some already. But I mean, what do you do to give yourself a good night's sleep? You must think about this quite a lot. How do you prepare yourself for sleep?
Stephanie: So it's really important that you have a routine. So regardless of how well you've slept the night before, even if you've had a really bad night's sleep, it's important that you get up the same time each day. It's also important that you go to bed at the same time each night. And that's about making your body understand when you should be awake, when you should be asleep and also getting some daylight. So go for a walk to get your coffee. Even if it's five or 10 minutes, you know, get out there for a brisk walk or a brisk walk at lunchtime if you can. So then you you're getting two factors there, you're getting the physical activity, which helps you sleep better at nighttime. And also you're getting the exposure to sunlight. And don't have too much alcohol, because people always seem to think that they sleep better when they're having alcohol. But the type of sleep that they have is not good quality sleep.
[Music plays.]
Jim: If you need some advice on how to better manage your sleep, or you just want someone to talk to in the middle of the night, you can call the National Dementia Helpline and talk to an advisor like Kristin, they're on the other end of the phone 24 hours a day and night and they're here to help.
Kristin: It's great that you've noticed that your sleep is changing and you're wondering what might be causing it. Your GP is a great place to go to talk about all of the things that could be impacting sleep. And it's really important you talk with your GP about changing anything like medication. If you notice that sleep is something that's difficult for you on a regular basis, maybe you want to create a little soft spot in your house, a place that has things that make you feel good, something like music, soft music that you could listen to, or a photo album of some of your favourite people, a place that's quiet and soft, and might help you feel comfortable again. If you've got any questions or you want to talk to somebody about anything you've heard on this episode, or how to get through a sleepless night, you can contact the National Dementia Helpline on 1800 100 500. You'll get to speak to an advisor, like me, and we're here 24 hours a day, every day of the year.
[Music plays.]
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: 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 and
Hamish: by me, Hamish. The executive producers are Kellie Reardon and Grace Pashley. The producer is Liam Riordon, sound designed by Sean Holden. A special thanks to the whole team at Dementia Australia and to all the advocates who shared their stories on this podcast.
[END OF RECORDED MATERIAL]
About the episode
Disjointed sleep is one symptom people living with dementia may encounter. And if your sleep is suffering, you’ll feel the impacts in your waking hours too. So what can you do about it?
Bonus episode
Transcript
[BEGINNING OF RECORDED MATERIAL]
Jim: We all need a good night's sleep to live a healthy life. But after a dementia diagnosis, the long, dark hours can be so challenging. I'm Jim Rogers, and this is Hold the Moment, a podcast from Dementia Australia. Since my own diagnosis of younger onset Alzheimer's, I often wake up sometimes a little disorientated or unsure of my surroundings. Some of you might be experiencing bad dreams as well. We've done a whole episode of Hold the Moment about sleep. You'll meet Ann, who's spent a lot of time trying to get better rest. And if you haven't heard that episode yet, do find it in your podcast feed. But this is our sleep bonus episode, with advice from the National Dementia Helpline - a free service available 24 hours a day, if you need some support. Here's one of their advisors Kristin, with some tips for a better night's sleep.
Kristin: When you wake up in the night, you might feel a bit confused and disoriented and that can feel a bit scary. There are some things that you might want to try that help you feel more comfortable when you wake up in the night. Leaving on a nightlight that guides you towards the toilet, or a favourite reading chair or a place where you might listen to some music. It might also be helpful if you start to feel confused or disoriented. Just take a moment to close your eyes. Take a breath. And as your worries melt a little bit, it might feel easier to figure out what to do next. [Music plays.] It might be helpful to keep your bedroom as clear as possible. It'll make it easier for you to navigate if you need to leave your room. And it might be less confusing with unusual shadows or shapes. If you find that you are waking up in the night, you could make some plans so that you already know ahead of time that this might happen. During the day, you could get together some of the things that help you relax, that make you feel good.
Maybe you've got a favourite chair, a favourite blanket, photos of some of your favourite people. And you could put them there, ready. So any night that you wake up, and you're not feeling 100 per cent, you've got a place that you can go to where you can feel good, and feel safe. It's great that you've noticed that your sleep is changing and you're wondering what might be causing it. Your GP is a great place to go, to talk about all of the things that could be impacting sleep. And it's really important you talk with your GP about changing anything like medication. Your GP knows you really well and can look holistically at all of the things that could be impacting on sleep and come up with a plan to improve it for you. If you've got any questions, or you want to talk to somebody about anything you've heard on this episode, or how to get through a sleepless night, you can contact the National Dementia Helpline on 1800 100 500. You'll get to speak to an advisor like me and we're here 24 hours a day, every day of the year.
[END OF RECORDED MATERIAL]
Bonus episode: managing changes in sleep with dementia
Helpful resources and tips for what to do when your diagnosis is getting in the way of a good night’s sleep, from National Dementia Helpline staff.
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 One explores diagnosis, relationships and everyday life after dementia, including strategies for exercise, sleep and staying connected.
Subscribe to the podcast
You can subscribe to the Hold the Moment Podcast on your favourite platforms, including:
- Apple Podcast
Subscribe to Hold the Moment on Apple Podcasts.
https://podcasts.apple.com/au/podcast/hold-the-moment/id1761945729 - Spotify
Subscribe to Hold the Moment on Spotify.
https://open.spotify.com/show/2flVINrLfqr23P3V6XwBLS - YouTube
Subscribe 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.