September 9, 2024 • 30 mins
Ann, a former nurse, struggles to sleep because of the symptoms of her Lewy body dementia. Most nights, Ann experiences intense, multi-sensory hallucinations.
Meanwhile, Jim Rogers takes us through some of the long nights he’s experienced since his diagnosis of Alzheimer's disease.
Sleep is vital to both mental and physical health, and it’s disrupted for many people living with dementia. Associate Professor Stephanie Rainey-Smith, a neuroscientist from Murdoch University, explains disturbances in sleep, what causes hallucinations for people living with dementia and has some tips for improving your sleep.
Dementia Australia has plenty of resources relating to sleep on its website here.
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Hold the Moment is a podcast from Dementia Australia, produced by Deadset Studios and hosted by Jim Rogers and Hamish Macdonald.
For support, you can contact the National Dementia Helpline on 1800 100 500 (24 hours a day, seven days a week). The National Dementia Helpline is funded by the Australian Government.
Follow Dementia Australia on Facebook and Instagram or find support resources on our website.
This episode was produced by Liam Riordan. Sound design by Sean Holden. The executive producers are Grace Pashley and Kellie Riordan. Production manager is Ann Chesterman.
Dementia Australia and Deadset Studios acknowledge the Traditional Owners of Country throughout Australia and recognise their continuing connection to lands, waters and communities. We pay our respect to their Elders past and present, and extend that respect to all Aboriginal and Torres Strait Islander peoples today.
Dementia Australia acknowledges and appreciates the support of the Australian Government for this initiative.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
- Hello, my name is Kevin.
I am a First Nations advocatewith Dementia Australia.
These lands in which we aremeeting are many countries
filled with languagessimilar and different.
For more than 50,000 years,we have come together
to trade knowledge, tolearn, and to teach.
Today, we joined tokeep up that tradition.
So with that in mind,we now pay our respects
(00:22):
to the traditional owners,to Elders past and present,
to those First Nationspeople joining us here today.
- Oh, I've been awake since2:30AM, probably before then,
(00:47):
but I had such vivid dreams.
It's excruciatingly
annoying how you wake upto these dreams that have
sort of flashing lights in your brain,
and images, and thingsgoing on in your head,
(01:08):
it's so hard to explain,
but it's like watchinga video on fast forward,
you get to a point whereyou've just got to get up,
and get out of bed and goupstairs, make a drink,
and try and, you know, distract yourself.
You learn to live with it,
(01:29):
but it really weighs heavy on you.
It's tiring and it's hard.
- Like lots of peopleliving with dementia,
Jim struggles to get a good night's sleep,
though there are some things that help.
- So yesterday, I had a sleeping tablet
before I went to sleep,
so I get really excited about that.
(01:51):
It's the best day of the week for me,
I do it a couple of times a week,
and yeah, this morningI've woken up at 5:00 AM,
I've had literally a full night's sleep,
so I feel really revitalised
and ready to start the day.
It's so good when you do get that sleep,
(02:13):
it's just the best.
- But even the sleeping tabletsare not a silver bullet.
- My neurologist prefers that I don't take
too many sleeping tablets.
One, because they become less effective.
And secondly, the medicationthat I'm on for my brain,
(02:35):
for Alzheimer's, is counteractedby the sleeping tablet,
so that just doesn't help.
So you have this relentlessrecurrence of bad sleep.
So you have this relentlessrecurrence of bad sleep.
There's no such thingas a full night's sleep.
(03:07):
- Jim, I'm curious, beforeyou got your diagnosis
with younger-onset Alzheimer's,were you a good sleeper?
- Oh yeah, I was a great sleeper.
I used to, you know, generally get six,
seven hours a night, quite happily.
- All that beauty sleep.
- (laughs) There you go, itdoesn't come from nothing.
(03:28):
This is Hold the Moment, apodcast from Dementia Australia
full of real stories aboutlife after diagnosis.
I'm Jim Rogers.
- And I'm Hamish MacDonald.
My dad has found sleepingsuper complicated
since he's been diagnosedwith Lewy body dementia.
He'd been diagnosed previouslywith Parkinson's disease.
(03:49):
There's a whole range of flowon effects from that as well.
Energy levels, cognition, heaps of stuff.
Later in this episode,you're going to hear
from a neuroscientist aboutwhy the nights can be so long
when you're living with dementia.
Plus, some tips to get youthrough to the next day.
- But first, let's meet Anne,whose symptoms can cause
(04:09):
some pretty strange thingsto happen in the night.
- Hi, I am Anne. I'm 71.
I'm living with Lewy body dementia,
and I believe I'm living well with it,
and try my hardest to getthe best out of every day.
(04:30):
- Sometimes the night's not so great?
- That's why I said the days.
(all laugh)
I live with my husband,Timothy, who is very supportive,
and we try and live aswell as we possibly can.
- We are here to talk about sleep,
but how does a rough night'ssleep impact your days, Anne?
- I find that you get up in the morning,
and I might then go backto bed after breakfast
(04:53):
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 domore than one thing in a day
that requires too much, you know,
a bit of gray movement and thinking,
but I don't think I haveslept through a night for,
(05:15):
well, I couldn't remember when,
but I've got dementia, soI wouldn't know anyway.
(all laugh)
But for example, last night,I had a terrible night.
I had one series ofdreams and that was a bit,
you know, I get very, oh, I move a lot
and, you know, hit Timothy,and he's quite used to it.
(05:37):
He bears the bruise as well.
But then I went back, Iwas 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, "Canyou get up and check that?"
(05:59):
And I thought I saw him getup, but he hadn't moved at all,
I noticed, anyway, I thought I got up,
well, in my dream or hallucination state,
got up, and went outside, and checked it,
and we are staying in a hotel.
And across the way, Ithought that that was
where all the noise was coming from.
(06:21):
There were three women out there,
and they were all sortof 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 allright. Is everything okay?
I'm a nurse, you know,if somebody's bleeding
and dying, I can look after them."
(06:43):
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 sort ofreorientate me to the room,
(07:04):
and tell me where we were, whatthe doors were, and so forth
- So this hallucination you're describing,
is it worse because you'retravelling at the moment?
You are interstate for this recording?
Does the unfamiliar environmentmake much of a difference?
- No, it happens at home, too.
I'll wake up, well, I'llhave an hallucination.
(07:25):
I call them hallucinationsbecause I can see the people,
and then I'll sort of say, "Where am I?"
You know, and Tim will wake me up and say,
and I'll say, "but wheredoes that door go to?
But isn't that the, where,which house are we in?"
And then he wakes me upand I'm back to normal,
(07:47):
what is normal?
And then I stay awake for a while.
It's hard to get back to sleep, often.
And generally, I'm okaythen, but sometimes,
I'll have another one as well.
- So, do you have any of this stuff, Jim?
- I dream in fast forward now.
(08:09):
So, you know, if you're 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 distressingin 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 dreamsapparent at the beginning,
(08:30):
or are they somethingthat have progressively
got worse as time's gone on?
- Initially, I didn't have dreams.
I had restless legs and...
- Which I suffer from too.
- Yes. Yeah.
And throwing around my arms and things,
and the dreams came later.
(08:51):
And that was probably somethingthat was more significant
with the diagnosis of Lewy body dementia.
And my mother-in-lawhad Lewy body dementia,
and she used to constantly saythere are ants in the pantry,
but there weren't any ants in the pantry.
(09:11):
We'd check, and there was amouse that used to visit her.
Well, it didn't.
And Tim stayed at her place,and stepped in her bed
to see what happened, andnothing happened to him.
But in the morning, shesaid, "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,
(09:32):
they just ring the bell and run away."
- Yeah.
- We just realised there wassomething more going on than
ants in the pantry.
- My dad is living withLewy body dementia,
so he has terrible sleep issues,disrupted sleep at night,
but then sleeps massively duringthe day, sometimes all day.
But he also has thesevery vivid hallucinations,
(09:53):
which are a feature, as I understand it,
of Lewy body dementia, butthey're totally real to him.
and we can have a very lucid conversation,
which is largely groundedin fact and reality,
and then it'll move in and outof him telling these stories
of where he's been inthe Bavarian Alps, or...
(10:16):
- Yes.
- So, there's a little bit ofmemory mixed in with the dream
- From the outside, it's very hard to know
which bit is real and whichbit is the hallucinations.
- And it's 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?
(10:38):
We all have different pathwayswith our hallucinations,
if we have them, or our dreams and things.
And I think you have to realisethat we're not going to,
yours won't be the sameas mine necessarily, Jim,
but they could be, or theymay not develop any worse
or whatever, but Ithink it's just a matter
(11:01):
of recognising that that's part and parcel
of what's going to behappening and to be believed.
- How scary is it for you?
- Oh, it can be really scary.
I can, I mean, there wasa time when I had this
multimodal hallucination.
- Which means?
- Multimodal means multimodal,different, various types of,
(11:25):
- You can smell it,- you can touch it,
and I can, you know, feel it and all that,
And I can see it, and I can feel a bed
when somebody's sitting next to you,
you know how the bed goes down?
- Yeah.
- And I can feel that.
- That's scary.
- The first time it ever happened,
I was absolutely freaked out.
And from then on, it developed into
(11:45):
these other forms offeeling and seeing things.
And this other thing had been,
I had referred it as a rude word,
because it used to recur,and I called it a bastard,
because this black round thing kept,
like one of those exerciseballs with its spikes on it,
(12:07):
it kept sort of appearing indreams and coming towards me,
and trying to, yeah, well Ifelt it was trying to scare me.
And I thought, well, you know,
and it will goosh around in front of me,
and one day, I thought,"No, I'm going to catch you,
and I grabbed it, and squeezed it,
and it exploded into awhole massive black ether-y,
(12:31):
whatever, and justdisappeared into the sunset.
And I thought, oh, I wasabsolutely petrified doing it,
but I thought, look, you'vebeen driving me mad for nights
and I've had it.
- And so, when you aredescribing this to us now,
is your memory of itstill as real as it was?
- Yeah.
(12:52):
Yes it is. It's almost asif it's happened again.
- Even though, you know?- I know that it didn't.
Yes, yes, exactly.
- The hallucinations andexperiences won't necessarily
(13:13):
happen for everyone living with dementia.
But if they do, how thepeople around them react
is really important.
- It's very important for thecarer not to dismiss that,
because what's happening is very real
to the individual living with dementia.
It's very important that thecarer helps the individual
living with dementia get through that,
(13:34):
and saying something like, ifthey'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'shappening in the background
like the television, there'ssome violent program on
television, get rid ofthat background noise,
create a calming environment,
distract the individual, basically.
(13:56):
My name is Stephanie Rainey-Smith.
I'm an associate professor
in the Centre for HealthyAgeing at Murdoch University
and Alzheimer's Research Australia.
- So Stephanie, what causesthese hallucinations to happen?
- It's generally just the changes
that are happening to the brain.
So, the regions of thebrain that are associated
(14:18):
with understanding yoursurroundings, your environment,
and separating out fromreality 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 distinguishbetween the dream and reality,
(14:42):
so it can be veryconfusing and disorienting
for the individual.
- Can you explain for me the connection
between dementia and sleep?
Is there an easy way ofexplaining the connection?
- Well, what we know now isthat there's what we call
a bidirectional relationshipbetween sleep and dementia.
We know certainly that as someone starts
(15:03):
to develop dementia,
problems with their sleep isone of the first complaints
that they attend their GPwith, or their treating doctor.
And in addition to that,as the disease progresses,
sleep becomes worse.
But we are also starting to understand
that not only is it asymptom of the disease,
but also, in earlier life,poor sleep can increase
your likelihood of developing dementia.
(15:26):
- Okay, poor sleep canincrease your chances
of being diagnosed with dementia?
- Yes, we believe so.
The evidence is certainly stacking up
to suggest that that's the case.
- Can you tease that out?Like what sort of features
of poor sleep might contribute,and do you know why?
- So, we know that sleepis really important
for processing the informationthat you accumulate
(15:47):
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 importantfor clearing toxins out
from the brain whilst you're sleeping,
and these toxins canaccumulate during the day,
and we know that some of those toxins
are related to dementia.
(16:08):
For example, in the case of dementia
due to Alzheimer's disease,
there's a particularprotein called beta amyloid
that accumulates in the brainand kills the brain cells.
And when someone is having poor sleep,
if we liken it to a housekeeping system,
there isn't enough timeto sweep all the amyloid
out of the brain, andit starts to accumulate,
(16:29):
and this creates a toxic environment
that can contribute todeath of brain cells.
- So aside from poorsleep, it seems like lots
of dementia symptomscan be worse at night.
What is it about the night time
that can exacerbate these things?
- So in the case of dementia,
there's something that'sreferred to as sundowning.
And that means that in theevening and at night time,
(16:51):
some of the symptoms seem to get worse,
and they do get worse.
And this can include thingslike pacing, agitation,
problems with sleep,and also hallucinations.
And some of the confusionand disorientation
can be related to shadows, for example,
as the natural light levels are dropping,
(17:12):
shadows are created, andthe brain doesn't know how
to process those shadows.
And it can create some anxiety and stress
for the individual who'sexperiencing dementia.
And also, at nighttime when they wake up
and they don't know if they'vejust had a vivid dream,
they can't understand and differentiate
(17:34):
between the dream and reality,so that becomes confusing.
And also, if there's lowlevels of light in the room
that they're in, it canbe quite frightening,
they don't know wherethey are straight away,
or they can't recognise things,
or even if it's a familiar environment,
the way that things lookwhen the lights are off
can be very different.
And all of that contributesto the confusion
(17:54):
and disorientation.
- Do different forms of dementiaimpact sleep differently?
- 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 havetrouble falling asleep,
but once they're asleepthey wake up often.
Whereas in other types of dementia such
(18:16):
as vascular dementia, peopleoften feel excessively sleepy,
so they might have a lot more sleep.
Whereas in dementia with Lewy bodies,
people can complain sometimesof having something called
REM sleep behaviour disorder,
and that's when peopleact out their dreams,
and that can be very confrontingfor the individual living
with dementia, but alsofor their caregiver.
(18:38):
- It sounds very confusing
because all of these thingsseem to be perpetuating
the other things, right?
- That's right. It's almostlike a feedforward loop.
You've got the symptoms of,
or the hallmarks, asyou like, of the disease
that are accumulating inthe brain that contribute
to the disruptive sleep.
Then the disrupted sleep,itself, contributes to more
(18:59):
of those hallmarks buildingup within the brain.
And then, you add on the complexities
of the medications on top of that,
it can be very difficultfor individuals living
with dementia to dealwith and to cope with.
- So does this then causeor contribute to some of
the other things that peopleliving with various forms
of dementia experience likedepression and anxiety?
(19:22):
- So we know that sleep isreally, really important
for regulating mood, andthere'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 brainregions that are involved
in controlling mood areclosely linked to those
(19:44):
that are involved in sleep.
- I mean I know you'resaying it's badly named
the misery loop, but ifyou're living through it,
presumably, it's a pretty apt description.
- That's right, and it's alsono fun for the carer as well,
who's having to deal with a loved one
who is up at night oracting out their dreams,
it can be very distressing for everybody
(20:09):
- The misery cycle.
I think I've felt that beforeand I know Anne has too.
Let's go and see whatworks for Anne to break
that loop of bad sleep.
- I do use sleeping tablets,
and generally, I can getoff to sleep fairly easily,
(20:31):
but it's the waking, andthen often lying awake,
and just having to sort ofknow 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 thenight and I'm awake again,
I might take anotherhalf a sleeping tablet
(20:53):
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 atnight, for obvious reasons.
- As in you're scaredabout what might happen?
(21:13):
- Yes. I never know if it'sgoing to be a good night
or a bad night.
And so it's just, mine'sa bit trial and error.
- That's a really sadthing to come to terms with
because we all sleep.
I mean, Hamish how manyhours would you say you get
as a very busy journalist?
- Seven? Eight?- Seven, eight?
And the thought of going tobed and not getting that sleep?
(21:35):
- Yeah.
- And is it going tobe a terrifying night?
Am I going to be exhausted,
and are my batteries going to be charged,
so I can address what I'vegot to do the next day?
Deal with all of thatinternally, that's frustrating.
- So do you have a strategy, Anne,
for trying to get back to sleep,
or do you just accept that you are awake?
- I accept I'm awake,
(21:56):
and I don't think that'sa very good strategy,
but it's what works for me.
I just know that, I usedto listen to the radio,
but terrible night time radio,
(all laugh)
and talk back, and oh, Ithought, "No, thank you."
And that sort of makes you more alert,
and I don't want to be stimulated.
(22:19):
I want to be just left.
- Because you FaceTimefamily in the UK right?
In the early hours?
- Yeah.
- That's something you do to cope.
- Yeah. And that's quitedifficult sometimes,
because if you're up at thosetimes, you can FaceTime,
and then when you are not,they almost get reliant
that you are going tobe up in those hours,
(22:39):
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, Iwas asleep at the time.
- Do you notice that when you've had
a really bad night's sleep
that it impacts the way yourbrain functions the next day?
- Totally. Particularly if it's a
(23:02):
really frightening evening, night,
I feel fuzzy the nextday, things aren't as easy
to accomplish as they were before,
I won't feel like goingout very much at all.
A lot of what I do is forced to go out
(23:23):
because I know you have to,
and you'd probably understand that too.
because you know, if you don't go out,
it's not good for you.
- Yeah, I think itaffects your mood as well
the next day when you've beenthrough a very tiring night,
and you know, perhapsyou've got a big day,
or things on that day,and you want to be fresh,
(23:44):
or you know, as you normally used to be.
And now, I sort ofalmost, not get panicky,
but in prep for the daywhen 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
(24:04):
whatever it might be that'sfalling on a certain day.
Do you find it affectsyour energy level a lot,
and you have to sort ofplan what you're doing,
like this for example?
- 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 lotfor Dementia Australia,
(24:26):
and I'm involved in a lot of committees
nationally and internationally,which is terrific
because I think that's greatfor my brain and I love it,
but it's not always easy,
and sometimes, it's a realchore to get organised
to do those things.
And if you've had a badnight, it's quite likely
(24:47):
that you're going tohave to push yourself,
and so, you can only dothat one thing in that day.
And then you sort of justflake at the end of the day.
- I actually feel a lotbetter this morning.
I woke up a couple of timesin the night, but I was able
to go back to sleep, butI feel a bit more rested,
(25:10):
and I think that was because yesterday
I had a really good meditation,yoga class with Matt,
I had a really good meditation,yoga class with Matt,
the yoga guy that I have lessons with,
and it just seemed tohelp me feel more rested
and a little bit more relaxed.
(25:35):
- Other than theoccasional sleeping tablet.
Yoga and meditation can helpJim get a proper night's rest.
Stephanie has a few othertips you can try too.
- Things like makingsure that your bedroom
is at a comfortable temperature for sleep.
Also ensuring that youmight eat more at lunchtime,
and have a lighter mealcloser to evening time.
(25:57):
As well as not having too muchalcohol intake or caffeine.
It's really important toget exposure to daylight,
and this is because when individuals
are experiencing dementia,
they actually have their body clock,
which governs when they'reawake and when they're asleep
can be quite confused.
And so, getting out into naturalsunlight can help the body
(26:19):
to understand when it should be awake
and when it's time for sleep.
And also, undertakingsome physical activity.
Even just 10 minutes ofbeing physically active a day
has being shown to improve sleep.
And if that's not helping,then it might be time
to start looking at sometypes of medications.
- So just a bit of, you know,
constructive, management, strategy stuff.
(26:41):
I know you mentionedsome already, but I mean,
what do you do to giveyourself a good night's sleep?
You must think about this quite a lot,
how do you prepare yourself for sleep?
- It's really importantthat you have a routine,
so regardless of how wellyou've slept the night before,
even if you've had areally bad night's sleep,
it's important that you getup the same time each day.
It's also important that you go to bed
(27:03):
at the same time each night.
And that's about makingyour body understand
when you should be awake,when you should be asleep.
Also, getting some daylight,
so go for a walk and to getyour coffee, even if it's five
or 10 minutes, you know, getout there for a brisk walk,
or a brisk walk at lunchtime, if you can.
So then, you're getting two factors there,
(27:23):
you're getting the physical activity,
which helps you sleepbetter at night time.
and also, you're gettingthe exposure to sunlight,
and don't have too much alcohol
because people always seem to think
that they sleep better whenthey're having alcohol,
but the type of sleep that they have is,
is not good quality sleep.
(27:52):
- If you need some advice onhow to better manage your sleep
or you just want someoneto talk to in the middle
of the night, you can callthe National Dementia Helpline
and talk to an advisor like Kristin.
They're on the other endof the phone 24-hours a day
and night, and they're here to help.
- It's great that you've noticedthat your sleep is changing
(28:14):
and you're wonderingwhat might be causing it.
Your GP is a great placeto go to talk about
all of the things thatcould be impacting sleep,
and it's really importantyou talk with your GP
about changing anything like medication.
If you notice that sleep is something
that's difficult foryou on a regular basis,
(28:35):
maybe you want to create alittle soft spot in your house,
a place that has thingsthat make you feel good.
Something like music, softmusic that you could listen to,
or a photo album of someof your favourite people.
A place that's quiet and soft,
and might help you feel comfortable again.
(28:57):
If you've got any questions oryou want to talk to somebody
about anything you'veheard on this episode,
or how to get through a sleepless night,
you can contact the NationalDementia Helpline on
1800 100 500,
you'll get to speak to an advisor like me,
(29:18):
and we're here 24-hours aday, every day of the year.
- Hold the Moment is a podcastfrom Dementia Australia,
it's produced by Deadset Studios.
(29:39):
You can find more episodes and resources
through the Dementia Australiawebsite, dementia.org.au.
And don't forget to follow Hold the Moment
in your podcast app soyou don't miss an episode.
The show is hosted by me, Jim Rogers,
- And by me, Hamish MacDonald,
the executive producers areKelly Ridden and Grace Pashley.
The producer is Liam Ridden,sound design by Sean Holden.
(30:02):
A special thanks to the wholeteam at Dementia Australia,
and to all the advocates
who shared their stories on this podcast.
- Hello, my name is Kevin.
I am a First Nations advocatewith Dementia Australia.
These lands in which we aremeeting are many countries
filled with languagessimilar and different.
For more than 50,000 years,we have come together
to trade knowledge, tolearn, and to teach.
Today, we joined tokeep up that tradition.
So with that in mind,we now pay our respects
(00:22):
to the traditional owners,to Elders past and present,
to those First Nationspeople joining us here today.
- Oh, I've been awake since2:30AM, probably before then,
(00:47):
but I had such vivid dreams.
It's excruciatingly
annoying how you wake upto these dreams that have
sort of flashing lights in your brain,
and images, and thingsgoing on in your head,
(01:08):
it's so hard to explain,
but it's like watchinga video on fast forward,
you get to a point whereyou've just got to get up,
and get out of bed and goupstairs, make a drink,
and try and, you know, distract yourself.
You learn to live with it,
(01:29):
but it really weighs heavy on you.
It's tiring and it's hard.
- Like lots of peopleliving with dementia,
Jim struggles to get a good night's sleep,
though there are some things that help.
- So yesterday, I had a sleeping tablet
before I went to sleep,
so I get really excited about that.
(01:51):
It's the best day of the week for me,
I do it a couple of times a week,
and yeah, this morningI've woken up at 5:00 AM,
I've had literally a full night's sleep,
so I feel really revitalised
and ready to start the day.
It's so good when you do get that sleep,
(02:13):
it's just the best.
- But even the sleeping tabletsare not a silver bullet.
- My neurologist prefers that I don't take
too many sleeping tablets.
One, because they become less effective.
And secondly, the medicationthat I'm on for my brain,
(02:35):
for Alzheimer's, is counteractedby the sleeping tablet,
so that just doesn't help.
So you have this relentlessrecurrence of bad sleep.
So you have this relentlessrecurrence of bad sleep.
There's no such thingas a full night's sleep.
(03:07):
- Jim, I'm curious, beforeyou got your diagnosis
with younger-onset Alzheimer's,were you a good sleeper?
- Oh yeah, I was a great sleeper.
I used to, you know, generally get six,
seven hours a night, quite happily.
- All that beauty sleep.
- (laughs) There you go, itdoesn't come from nothing.
(03:28):
This is Hold the Moment, apodcast from Dementia Australia
full of real stories aboutlife after diagnosis.
I'm Jim Rogers.
- And I'm Hamish MacDonald.
My dad has found sleepingsuper complicated
since he's been diagnosedwith Lewy body dementia.
He'd been diagnosed previouslywith Parkinson's disease.
(03:49):
There's a whole range of flowon effects from that as well.
Energy levels, cognition, heaps of stuff.
Later in this episode,you're going to hear
from a neuroscientist aboutwhy the nights can be so long
when you're living with dementia.
Plus, some tips to get youthrough to the next day.
- But first, let's meet Anne,whose symptoms can cause
(04:09):
some pretty strange thingsto happen in the night.
- Hi, I am Anne. I'm 71.
I'm living with Lewy body dementia,
and I believe I'm living well with it,
and try my hardest to getthe best out of every day.
(04:30):
- Sometimes the night's not so great?
- That's why I said the days.
(all laugh)
I live with my husband,Timothy, who is very supportive,
and we try and live aswell as we possibly can.
- We are here to talk about sleep,
but how does a rough night'ssleep impact your days, Anne?
- I find that you get up in the morning,
and I might then go backto bed after breakfast
(04:53):
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 domore than one thing in a day
that requires too much, you know,
a bit of gray movement and thinking,
but I don't think I haveslept through a night for,
(05:15):
well, I couldn't remember when,
but I've got dementia, soI wouldn't know anyway.
(all laugh)
But for example, last night,I had a terrible night.
I had one series ofdreams and that was a bit,
you know, I get very, oh, I move a lot
and, you know, hit Timothy,and he's quite used to it.
(05:37):
He bears the bruise as well.
But then I went back, Iwas 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, "Canyou get up and check that?"
(05:59):
And I thought I saw him getup, but he hadn't moved at all,
I noticed, anyway, I thought I got up,
well, in my dream or hallucination state,
got up, and went outside, and checked it,
and we are staying in a hotel.
And across the way, Ithought that that was
where all the noise was coming from.
(06:21):
There were three women out there,
and they were all sortof 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 allright. Is everything okay?
I'm a nurse, you know,if somebody's bleeding
and dying, I can look after them."
(06:43):
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 sort ofreorientate me to the room,
(07:04):
and tell me where we were, whatthe doors were, and so forth
- So this hallucination you're describing,
is it worse because you'retravelling at the moment?
You are interstate for this recording?
Does the unfamiliar environmentmake much of a difference?
- No, it happens at home, too.
I'll wake up, well, I'llhave an hallucination.
(07:25):
I call them hallucinationsbecause I can see the people,
and then I'll sort of say, "Where am I?"
You know, and Tim will wake me up and say,
and I'll say, "but wheredoes that door go to?
But isn't that the, where,which house are we in?"
And then he wakes me upand I'm back to normal,
(07:47):
what is normal?
And then I stay awake for a while.
It's hard to get back to sleep, often.
And generally, I'm okaythen, but sometimes,
I'll have another one as well.
- So, do you have any of this stuff, Jim?
- I dream in fast forward now.
(08:09):
So, you know, if you're 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 distressingin 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 dreamsapparent at the beginning,
(08:30):
or are they somethingthat have progressively
got worse as time's gone on?
- Initially, I didn't have dreams.
I had restless legs and...
- Which I suffer from too.
- Yes. Yeah.
And throwing around my arms and things,
and the dreams came later.
(08:51):
And that was probably somethingthat was more significant
with the diagnosis of Lewy body dementia.
And my mother-in-lawhad Lewy body dementia,
and she used to constantly saythere are ants in the pantry,
but there weren't any ants in the pantry.
(09:11):
We'd check, and there was amouse that used to visit her.
Well, it didn't.
And Tim stayed at her place,and stepped in her bed
to see what happened, andnothing happened to him.
But in the morning, shesaid, "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,
(09:32):
they just ring the bell and run away."
- Yeah.
- We just realised there wassomething more going on than
ants in the pantry.
- My dad is living withLewy body dementia,
so he has terrible sleep issues,disrupted sleep at night,
but then sleeps massively duringthe day, sometimes all day.
But he also has thesevery vivid hallucinations,
(09:53):
which are a feature, as I understand it,
of Lewy body dementia, butthey're totally real to him.
and we can have a very lucid conversation,
which is largely groundedin fact and reality,
and then it'll move in and outof him telling these stories
of where he's been inthe Bavarian Alps, or...
(10:16):
- Yes.
- So, there's a little bit ofmemory mixed in with the dream
- From the outside, it's very hard to know
which bit is real and whichbit is the hallucinations.
- And it's 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?
(10:38):
We all have different pathwayswith our hallucinations,
if we have them, or our dreams and things.
And I think you have to realisethat we're not going to,
yours won't be the sameas mine necessarily, Jim,
but they could be, or theymay not develop any worse
or whatever, but Ithink it's just a matter
(11:01):
of recognising that that's part and parcel
of what's going to behappening and to be believed.
- How scary is it for you?
- Oh, it can be really scary.
I can, I mean, there wasa time when I had this
multimodal hallucination.
- Which means?
- Multimodal means multimodal,different, various types of,
(11:25):
- You can smell it,- you can touch it,
and I can, you know, feel it and all that,
And I can see it, and I can feel a bed
when somebody's sitting next to you,
you know how the bed goes down?
- Yeah.
- And I can feel that.
- That's scary.
- The first time it ever happened,
I was absolutely freaked out.
And from then on, it developed into
(11:45):
these other forms offeeling and seeing things.
And this other thing had been,
I had referred it as a rude word,
because it used to recur,and I called it a bastard,
because this black round thing kept,
like one of those exerciseballs with its spikes on it,
(12:07):
it kept sort of appearing indreams and coming towards me,
and trying to, yeah, well Ifelt it was trying to scare me.
And I thought, well, you know,
and it will goosh around in front of me,
and one day, I thought,"No, I'm going to catch you,
and I grabbed it, and squeezed it,
and it exploded into awhole massive black ether-y,
(12:31):
whatever, and justdisappeared into the sunset.
And I thought, oh, I wasabsolutely petrified doing it,
but I thought, look, you'vebeen driving me mad for nights
and I've had it.
- And so, when you aredescribing this to us now,
is your memory of itstill as real as it was?
- Yeah.
(12:52):
Yes it is. It's almost asif it's happened again.
- Even though, you know?- I know that it didn't.
Yes, yes, exactly.
- The hallucinations andexperiences won't necessarily
(13:13):
happen for everyone living with dementia.
But if they do, how thepeople around them react
is really important.
- It's very important for thecarer not to dismiss that,
because what's happening is very real
to the individual living with dementia.
It's very important that thecarer helps the individual
living with dementia get through that,
(13:34):
and saying something like, ifthey'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'shappening in the background
like the television, there'ssome violent program on
television, get rid ofthat background noise,
create a calming environment,
distract the individual, basically.
(13:56):
My name is Stephanie Rainey-Smith.
I'm an associate professor
in the Centre for HealthyAgeing at Murdoch University
and Alzheimer's Research Australia.
- So Stephanie, what causesthese hallucinations to happen?
- It's generally just the changes
that are happening to the brain.
So, the regions of thebrain that are associated
(14:18):
with understanding yoursurroundings, your environment,
and separating out fromreality 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 distinguishbetween the dream and reality,
(14:42):
so it can be veryconfusing and disorienting
for the individual.
- Can you explain for me the connection
between dementia and sleep?
Is there an easy way ofexplaining the connection?
- Well, what we know now isthat there's what we call
a bidirectional relationshipbetween sleep and dementia.
We know certainly that as someone starts
(15:03):
to develop dementia,
problems with their sleep isone of the first complaints
that they attend their GPwith, or their treating doctor.
And in addition to that,as the disease progresses,
sleep becomes worse.
But we are also starting to understand
that not only is it asymptom of the disease,
but also, in earlier life,poor sleep can increase
your likelihood of developing dementia.
(15:26):
- Okay, poor sleep canincrease your chances
of being diagnosed with dementia?
- Yes, we believe so.
The evidence is certainly stacking up
to suggest that that's the case.
- Can you tease that out?Like what sort of features
of poor sleep might contribute,and do you know why?
- So, we know that sleepis really important
for processing the informationthat you accumulate
(15:47):
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 importantfor clearing toxins out
from the brain whilst you're sleeping,
and these toxins canaccumulate during the day,
and we know that some of those toxins
are related to dementia.
(16:08):
For example, in the case of dementia
due to Alzheimer's disease,
there's a particularprotein called beta amyloid
that accumulates in the brainand kills the brain cells.
And when someone is having poor sleep,
if we liken it to a housekeeping system,
there isn't enough timeto sweep all the amyloid
out of the brain, andit starts to accumulate,
(16:29):
and this creates a toxic environment
that can contribute todeath of brain cells.
- So aside from poorsleep, it seems like lots
of dementia symptomscan be worse at night.
What is it about the night time
that can exacerbate these things?
- So in the case of dementia,
there's something that'sreferred to as sundowning.
And that means that in theevening and at night time,
(16:51):
some of the symptoms seem to get worse,
and they do get worse.
And this can include thingslike pacing, agitation,
problems with sleep,and also hallucinations.
And some of the confusionand disorientation
can be related to shadows, for example,
as the natural light levels are dropping,
(17:12):
shadows are created, andthe brain doesn't know how
to process those shadows.
And it can create some anxiety and stress
for the individual who'sexperiencing dementia.
And also, at nighttime when they wake up
and they don't know if they'vejust had a vivid dream,
they can't understand and differentiate
(17:34):
between the dream and reality,so that becomes confusing.
And also, if there's lowlevels of light in the room
that they're in, it canbe quite frightening,
they don't know wherethey are straight away,
or they can't recognise things,
or even if it's a familiar environment,
the way that things lookwhen the lights are off
can be very different.
And all of that contributesto the confusion
(17:54):
and disorientation.
- Do different forms of dementiaimpact sleep differently?
- 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 havetrouble falling asleep,
but once they're asleepthey wake up often.
Whereas in other types of dementia such
(18:16):
as vascular dementia, peopleoften feel excessively sleepy,
so they might have a lot more sleep.
Whereas in dementia with Lewy bodies,
people can complain sometimesof having something called
REM sleep behaviour disorder,
and that's when peopleact out their dreams,
and that can be very confrontingfor the individual living
with dementia, but alsofor their caregiver.
(18:38):
- It sounds very confusing
because all of these thingsseem to be perpetuating
the other things, right?
- That's right. It's almostlike a feedforward loop.
You've got the symptoms of,
or the hallmarks, asyou like, of the disease
that are accumulating inthe brain that contribute
to the disruptive sleep.
Then the disrupted sleep,itself, contributes to more
(18:59):
of those hallmarks buildingup within the brain.
And then, you add on the complexities
of the medications on top of that,
it can be very difficultfor individuals living
with dementia to dealwith and to cope with.
- So does this then causeor contribute to some of
the other things that peopleliving with various forms
of dementia experience likedepression and anxiety?
(19:22):
- So we know that sleep isreally, really important
for regulating mood, andthere'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 brainregions that are involved
in controlling mood areclosely linked to those
(19:44):
that are involved in sleep.
- I mean I know you'resaying it's badly named
the misery loop, but ifyou're living through it,
presumably, it's a pretty apt description.
- That's right, and it's alsono fun for the carer as well,
who's having to deal with a loved one
who is up at night oracting out their dreams,
it can be very distressing for everybody
(20:09):
- The misery cycle.
I think I've felt that beforeand I know Anne has too.
Let's go and see whatworks for Anne to break
that loop of bad sleep.
- I do use sleeping tablets,
and generally, I can getoff to sleep fairly easily,
(20:31):
but it's the waking, andthen often lying awake,
and just having to sort ofknow 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 thenight and I'm awake again,
I might take anotherhalf a sleeping tablet
(20:53):
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 atnight, for obvious reasons.
- As in you're scaredabout what might happen?
(21:13):
- Yes. I never know if it'sgoing to be a good night
or a bad night.
And so it's just, mine'sa bit trial and error.
- That's a really sadthing to come to terms with
because we all sleep.
I mean, Hamish how manyhours would you say you get
as a very busy journalist?
- Seven? Eight?- Seven, eight?
And the thought of going tobed and not getting that sleep?
(21:35):
- Yeah.
- And is it going tobe a terrifying night?
Am I going to be exhausted,
and are my batteries going to be charged,
so I can address what I'vegot to do the next day?
Deal with all of thatinternally, that's frustrating.
- So do you have a strategy, Anne,
for trying to get back to sleep,
or do you just accept that you are awake?
- I accept I'm awake,
(21:56):
and I don't think that'sa very good strategy,
but it's what works for me.
I just know that, I usedto listen to the radio,
but terrible night time radio,
(all laugh)
and talk back, and oh, Ithought, "No, thank you."
And that sort of makes you more alert,
and I don't want to be stimulated.
(22:19):
I want to be just left.
- Because you FaceTimefamily in the UK right?
In the early hours?
- Yeah.
- That's something you do to cope.
- Yeah. And that's quitedifficult sometimes,
because if you're up at thosetimes, you can FaceTime,
and then when you are not,they almost get reliant
that you are going tobe up in those hours,
(22:39):
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, Iwas asleep at the time.
- Do you notice that when you've had
a really bad night's sleep
that it impacts the way yourbrain functions the next day?
- Totally. Particularly if it's a
(23:02):
really frightening evening, night,
I feel fuzzy the nextday, things aren't as easy
to accomplish as they were before,
I won't feel like goingout very much at all.
A lot of what I do is forced to go out
(23:23):
because I know you have to,
and you'd probably understand that too.
because you know, if you don't go out,
it's not good for you.
- Yeah, I think itaffects your mood as well
the next day when you've beenthrough a very tiring night,
and you know, perhapsyou've got a big day,
or things on that day,and you want to be fresh,
(23:44):
or you know, as you normally used to be.
And now, I sort ofalmost, not get panicky,
but in prep for the daywhen 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
(24:04):
whatever it might be that'sfalling on a certain day.
Do you find it affectsyour energy level a lot,
and you have to sort ofplan what you're doing,
like this for example?
- 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 lotfor Dementia Australia,
(24:26):
and I'm involved in a lot of committees
nationally and internationally,which is terrific
because I think that's greatfor my brain and I love it,
but it's not always easy,
and sometimes, it's a realchore to get organised
to do those things.
And if you've had a badnight, it's quite likely
(24:47):
that you're going tohave to push yourself,
and so, you can only dothat one thing in that day.
And then you sort of justflake at the end of the day.
- I actually feel a lotbetter this morning.
I woke up a couple of timesin the night, but I was able
to go back to sleep, butI feel a bit more rested,
(25:10):
and I think that was because yesterday
I had a really good meditation,yoga class with Matt,
I had a really good meditation,yoga class with Matt,
the yoga guy that I have lessons with,
and it just seemed tohelp me feel more rested
and a little bit more relaxed.
(25:35):
- Other than theoccasional sleeping tablet.
Yoga and meditation can helpJim get a proper night's rest.
Stephanie has a few othertips you can try too.
- Things like makingsure that your bedroom
is at a comfortable temperature for sleep.
Also ensuring that youmight eat more at lunchtime,
and have a lighter mealcloser to evening time.
(25:57):
As well as not having too muchalcohol intake or caffeine.
It's really important toget exposure to daylight,
and this is because when individuals
are experiencing dementia,
they actually have their body clock,
which governs when they'reawake and when they're asleep
can be quite confused.
And so, getting out into naturalsunlight can help the body
(26:19):
to understand when it should be awake
and when it's time for sleep.
And also, undertakingsome physical activity.
Even just 10 minutes ofbeing physically active a day
has being shown to improve sleep.
And if that's not helping,then it might be time
to start looking at sometypes of medications.
- So just a bit of, you know,
constructive, management, strategy stuff.
(26:41):
I know you mentionedsome already, but I mean,
what do you do to giveyourself a good night's sleep?
You must think about this quite a lot,
how do you prepare yourself for sleep?
- It's really importantthat you have a routine,
so regardless of how wellyou've slept the night before,
even if you've had areally bad night's sleep,
it's important that you getup the same time each day.
It's also important that you go to bed
(27:03):
at the same time each night.
And that's about makingyour body understand
when you should be awake,when you should be asleep.
Also, getting some daylight,
so go for a walk and to getyour coffee, even if it's five
or 10 minutes, you know, getout there for a brisk walk,
or a brisk walk at lunchtime, if you can.
So then, you're getting two factors there,
(27:23):
you're getting the physical activity,
which helps you sleepbetter at night time.
and also, you're gettingthe exposure to sunlight,
and don't have too much alcohol
because people always seem to think
that they sleep better whenthey're having alcohol,
but the type of sleep that they have is,
is not good quality sleep.
(27:52):
- If you need some advice onhow to better manage your sleep
or you just want someoneto talk to in the middle
of the night, you can callthe National Dementia Helpline
and talk to an advisor like Kristin.
They're on the other endof the phone 24-hours a day
and night, and they're here to help.
- It's great that you've noticedthat your sleep is changing
(28:14):
and you're wonderingwhat might be causing it.
Your GP is a great placeto go to talk about
all of the things thatcould be impacting sleep,
and it's really importantyou talk with your GP
about changing anything like medication.
If you notice that sleep is something
that's difficult foryou on a regular basis,
(28:35):
maybe you want to create alittle soft spot in your house,
a place that has thingsthat make you feel good.
Something like music, softmusic that you could listen to,
or a photo album of someof your favourite people.
A place that's quiet and soft,
and might help you feel comfortable again.
(28:57):
If you've got any questions oryou want to talk to somebody
about anything you'veheard on this episode,
or how to get through a sleepless night,
you can contact the NationalDementia Helpline on
1800 100 500,
you'll get to speak to an advisor like me,
(29:18):
and we're here 24-hours aday, every day of the year.
- Hold the Moment is a podcastfrom Dementia Australia,
it's produced by Deadset Studios.
(29:39):
You can find more episodes and resources
through the Dementia Australiawebsite, dementia.org.au.
And don't forget to follow Hold the Moment
in your podcast app soyou don't miss an episode.
The show is hosted by me, Jim Rogers,
- And by me, Hamish MacDonald,
the executive producers areKelly Ridden and Grace Pashley.
The producer is Liam Ridden,sound design by Sean Holden.
(30:02):
A special thanks to the wholeteam at Dementia Australia,
and to all the advocates
who shared their stories on this podcast.
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