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Podcast – Sleep, Cognition & Dementia, ISTAART Research Perspectives

Is there a connection between sleep, memory, and dementia? Well, it’s complicated. Different types of dementia are associated with different sleep problems, and it is a hot topic for researchers. Whether poor sleep causes or exacerbates dementia, is being looked at and then the separate but related issue of dementia contributing to poor sleep. It is clear that more research is needed to understand this relationship; in particular research that observes large groups of affected people for very long periods of time.

In this ISTAART Research Perspectives Special, Fernando Peres [1] and Dr Clara Domínguez Vivero [2] get two perspectives on a research topic, from the researcher and the person who lives with the disease.

This time we are joined by Epidemiologist and Sleep Research expert Dr Yue Leng [3] from University of California, San Francisco and Dr Helen Rochford-Brennan [4], who has been living with dementia for a number of years and transformed her live into campaigning for improved awareness and human rights through charities and the European Working Group for People Living with Dementia.


Click here to read a full transcript of this podcast

Voice Over:

Welcome to the NIHR Dementia Researcher podcast brought to you by dementiaresearcher.nihr.ac.uk in association with Alzheimer’s Research UK and Alzheimer’s Society, supporting early career dementia researchers across the world.

Fernando Peres:

Hey everyone. Welcome to another ISTAART Research Perspectives podcast, the right place to hear about dementia research from two fundamental and complimentary perspectives, from someone living with dementia and the researcher in the topic. Today, we focus on sleep. One of my favorite activities and a vital engine for our health and wellbeing. It allows our body and brain to recover from the daily stressors and to recharge for the following day and God knows we need that. Today, we are talking about sleep with Clara Dominguez, a brilliant neurologist from Spain, which is my co-host here and we will host this podcast as interviewing remarkable people with a lot to say about the topic.

Fernando Peres:

My name is Fernando Aguzzoli and as you can tell by my wonderful accent, which is a joke, I am Brazilian. I’m a journalist and more importantly, I’m a devoted grandson. My personal interest in dementia began when my grandmother and best friend was diagnosed with Alzheimer’s and aware of impact that the disease would bring to our lives, I decided to drop out of college and quit my job to dedicate six long and incredible years to her. Quite an adventure, I must say, but we managed to be with her and to help protect her dignity until the very last moment. Now, I dedicate my time to finding ways to combine storytelling and science, aiming to raise empathy and connect everyone involved in this ecosystem of caring for someone with dementia.

Dr Clara Domínguez Vivero:

Greetings everyone. My name is Clara Dominguez. I work as a clinical neurologist in Spain and I have had a personal interest in cognitive disorders since I started studying medicine. Now as a clinician, I see people with cognitive issues every day and know the challenges they and their loved ones face. I am very honored to have the chance to participate in this podcast and help spread knowledge and understanding on these issues. But let’s move on to our chosen topic today, the relation between sleep and dementia viewed from two different angles.

Dr Clara Domínguez Vivero:

First, we will hear from Helen Rochford-Brennan, a member of the European Working Group of People Living with Dementia who was diagnosed with Alzheimer’s in 2012 and after, we will have the chance to talk with Dr. Yue Leng, who an expert in the relationship between sleep and cognitive disorders and maybe we’ll unveil some of the mysteries surrounding our dream time. People living with dementia and their family members can be heavily affected by sleep issues. They often have complaints about poor quality and quantity of their night’s sleep. Studies suggest a connection between sleep disorders and risk of developing dementia. Thankfully, some sleep interventions may have a positive impact on the overall picture. So let’s start by hearing some insight from someone who has a daily grasp on this impact.

Fernando Peres:

Helen, welcome to this virtual room and I must say, I am a fan of yours. I had the opportunity to hear a powerful testimony from you while the pre-pandemic world allowed face to face meetings. I was in Ireland in GBHI. I was a fellow there. This happened at Trinity College in Dublin but for those who haven’t had the same luck, could you quickly introduce yourself please?

Helen Rochford-Brennan:

Yeah. I’m Helen Rochford-Brennan and I live in Sligo on the beautiful Northwest of Ireland. I was diagnosed in 2012 after a five year battle of trying to find out whether I did or whether I didn’t have the brain disease of Alzheimer’s which I was diagnosed with. After maybe eight or nine months, I realized there wasn’t really, back then, very much of a pathway of care or anywhere for me to go and get some information of how to live with this illness and so I was lucky enough to have a nurse give me a contact at Trinity College, Professor Ian Robinson, who was carrying out research in cognitive rehabilitative therapy and I was delighted to be able to participate in that research because it led me to the Alzheimer’s Society of Ireland and the newly formed Irish Dementia Working Group.

Helen Rochford-Brennan:

And from very shortly thereafter, I became chair of that group and subsequently became a member of the European Working Group of People with Dementia. I was vice chair for four years and chair for four years so I’m delighted to be part of that great organization and I think I do work all over the world or I have participated in loads of research with various different bodies and I also collaborate with EU Mental Health. We do a lot of work with the European parliament and I also collaborate with the World Health Organization on their knowledge exchange program. So I’m a very active citizen but my main thing from the very beginning is that I realized my rights were violated and that there was nowhere for me to go and that is why I really wanted to try and make change. So that’s my motivation. My motivation is that the rights of all people, with whatever kind of dementia they have, are upheld and I suppose I want my legacy to be that I’ve done everything in my power to ensure that the people that are diagnosed after me have a much better quality of life.

Fernando Peres:

What a wonderful journey, Helen, because you are influencing policies, not just locally, but influencing how voice of people living this day by day can influence positively the others and how society perceives this diagnosis. Looking back, Helen, what was your sleep like prior to your symptoms and the diagnosis?

Helen Rochford-Brennan:

Like a log. I was a really busy person, I suppose, in my life. I was a very active citizen apart from a full a full-time worker and also I should have said from the beginning, I was a wife to Sean. He passed away last year and I’m a mother to Martin and so I really was very active and I was very active in my community and I have always been an active citizen wherever I have lived because I think it’s really important that we contribute to society. And so I slept well and then I was diagnosed and when I was diagnosed, I didn’t realize why I wasn’t able to sleep and why I am not able to sleep. It’s current. So all these years later, I still have the same pattern of not being able to sleep and so then I have to find out for myself because there was nobody for me to go to tell me, “Well, this is all part of the illness.”

Helen Rochford-Brennan:

So eventually Sean and myself were at my consultant and Sean talked about that I wasn’t sleeping and I’d go to bed at 12 o’clock, wake up at 2:00, maybe stay awake from 2:00 to 4:00. I’d get up, of course, and interrupt the whole house and so I was so tired. I was so fatigued. I was so exhausted that I… When we talked to the doctor, he said, “Oh, that’s all part of the illness. That’s all part of the illness.” So that might have been two years after I was diagnosed that I realized it was all part and parcel of Alzheimer’s and that, Fernando, was a bit of a shock that I had to think about that maybe this is going to be life from here on.

Helen Rochford-Brennan:

And the other thing was that I suppose I look back at my life and I think about being lucky that I could have slept for so long without sleep interruptions and then to realize that this illness was going to rob me of that too. It’s bad enough to rob you of your ability to remember which is my problem is short term memory. So then you have to learn to deal with it. So there wasn’t a lot we could really do other than try and seek out advice and Dr. Google became the main place to look. I tried some of the things, not having caffeine late or drink decaf tea, if I have to in the evening time, avoiding alcohol and avoiding any stimulant to try and see if it could help me to sleep and I’m afraid all to no avail.

Helen Rochford-Brennan:

I also have heart disease so I take medications so those medications may have an impact on my sleep as well because I take high blood pressure medication. I have heart stents. So at least I was able to try and to figure out some things that may be causing the problem as well as the Alzheimer’s because I tried… Then I did meditation and I also had things like Indian head massage, thinking in the evening, that might relax me and I could have kept on investing in different things and nothing was working and so I had to try and learn to live but you never learn to live with the tiredness.

Helen Rochford-Brennan:

You never learn to live with it has an impact on your weight because you’re so tired that the amount of exercise, even though I walk every day with my dog, do I walk as far as I should walk? No, I don’t. Look, over the years, I’m sure that I was irritable and probably pretty grumpy at times because I was tired but it has a profound consequence on you when you’re not able to sleep. Look, you’re not functioning to your full ability. You’re not on top of everything that you could be more on top of in your everyday life and then I honestly believe it must, in some way, shorten your life because if you are always tired, which, as years have rolled on, I have to say to you, it’s a different type of tiredness.

Helen Rochford-Brennan:

But it’s hard sometimes when I’m told, “Well, maybe if you had a very calm, peaceful house at night before you go to bed…” No. I like to watch TV. I like to stay up as long as I can and people like me that have this disease, we like to do that because then it means that if we go to bed early, well, then we’re awake and so if I went to bed at 10 o’clock, for example, I could be up, wide awake at 12:00. So that’s no good then because I’ll be awake until 2:00 or 3:00 in the morning and so now I try to wait up till 12 but I’m going to be watching TV or Netflix or something. I understand that but to me, that’s my calming. That’s my way of relaxing, getting in a peaceful mood. [inaudible 00:12:40] that it has a major impact on my weight. There is no question about it. The lack of sleep has really caused a major problem with my weight for me because of the over fatigue I feel.

Helen Rochford-Brennan:

So, every day is a challenge, but I find that as time goes on and as I get older that I probably require less sleep but when you wake up at night and you have, for example, when my husband was sick for a few months before he died, he had lung cancer and so once I’d wake up and I was thinking about rectifying everything in the world and setting all the rights of people with dementia to right, pardon the pun. But I found that then it was all about dying. Everything was about death and dying and no matter how I tried to close my eyes and meditate and I got apps… I got the Calm app to try and see if that would calm me and I would listen to the app.

Helen Rochford-Brennan:

A few minutes later, then the problem I would have, I’d doze off and within a very short time, I was awake again and so people like me that have suffered from sleep deprivation, nothing at times will work, especially in a time when you have a crisis and you have anxiety because for people with Alzheimer’s, stress causes anxiety and anxiety brings with it some real challenges. And please believe me, it brings with it some real challenges and so one of the greatest challenges, of course, is that you’re not really able to sleep at all for that period of time that you’re going through all that stress and grief and then, as I returned to somewhat normal life, again, you’re waking up and it seems to be the most ridiculous things that you think about when you wake up and when you wake up, everything becomes a crisis but they’re not a crisis. They’re actually nothing.

Helen Rochford-Brennan:

On the whole scale of my life, they’re probably nothing but by the time I get back to sleep, I can be rest assured of one thing, that I will be totally exasperated because that’s all I can think about in that here and now. So the lack of sleep, it’s daunting. It’s daunting to live with and I’ve tried all kinds of meditation. I’ve tried all kinds of apps to try and help me to relax and to deal with it and I find most nights that it’s easier for me to get up at… Say, for example, last night I went to bed hoping to sleep after a very long day in our parliament yesterday which is a three hour drive from here and I found myself going to bed at midnight and waking up again at 2:20.

Helen Rochford-Brennan:

And the only thing I can do at that point is to get up because I just have to get out of bed so I get up and I make myself a cup of decaf tea and then I try to get back to sleep again and it might take a while but that’s routine. That’s how life is and every Calm app that I’ve tried or I’ve tried melatonin, I’ve tried… I think, over the years, I honestly have tried everything I possibly can. The one thing I have not tried and I will not try is sleep medication because sleep medication has a further impact on our brain and our brain functioning and, of course, I want to keep my brain functioning to the best of its ability on a daily basis and one of the things that I found early on that this was not a really good idea and I was delighted that my consultant advised me on this.

Fernando Peres:

Helen, that was a powerful testimony. I hope we could have more time and go deeper in the subject. I, myself, I created a fun page on social media to share my day by day supporting my grandma going through Alzheimer’s and most of these strategies that you used yourself in your day by day and that you had to discover by your own, I also discovered living the day by day of Alzheimer’s with my grandma and I shared with a community, around 120,000 families that were following us and I was receiving back all their strategies to deal and to cope with sleep issues or with other things in our routine that we were facing a little bit of some challenges. This was very helpful. I do want to ask you, before we finish here, because as you know, the audience here are mainly early career researchers and do you have any message or question for them?

Helen Rochford-Brennan:

Well, the message I have for early career researchers is, “Don’t ever be afraid to ask a question.” One of the things that I have discovered over the years for early researchers is that they are not fully aware of the illness and that is fully acceptable and so they get a bit of a shock when they find out that we can laugh and we can talk and we can have lots of fun and we can give them loads of information. So I want them to understand that we still have loads of joy and laughter in our lives and we want them to never be afraid to ask a question and to have your questions. No matter what the question is and you may find that, “Oh God, maybe this is a simple question,” or, “Maybe I shouldn’t ask that question.”

Helen Rochford-Brennan:

Don’t think twice. Just ask the question and if you’re concerned about asking questions, you can always say, “Well, I’m not sure if I could ask this but do you mind if I ask it?” We want to help researchers and we want to engage. I have never met somebody that’s involved in advocacy and I do want to say that advocacy is not for everybody because you have to remember, we see the death and destruction along the way of what Alzheimer’s does to our colleagues but we keep going and we’re in that space because we want to be in that space and we want to help researchers because, as I said, there is no cure.

Helen Rochford-Brennan:

There is no 100% diagnosis. So how are we ever going to move on with ensuring all around the world, by having simple things to do for people in, like I mentioned earlier, cognitive rehabilitative therapy that we can help each other, no matter where we are to improve maybe our quality of sleep or quality of life or how we live our lives or how we can help. We want to help. We really do. I just cannot say it enough to researchers and we cannot say enough because we meet young researchers and they are afraid to talk to us and I met many of you young people over at Trinity. I’m still involved with the Global Brain Health Institute, very much with the fellows this year. We’ve even more involved than ever. So I think that it’s good to have research. It’s good for researchers never to be afraid to ask the question.

Fernando Peres:

That’s a really good piece of advice and never being afraid of asking those living, not just with dementia, but with-

Helen Rochford-Brennan:

Any chronic illness.

Fernando Peres:

… all the characteristics of life, exactly, and asking them how it’s like to be in their shoes and how can we communicate better and affect positively the world in this meaning so that’s really powerful, Helen. Thank you. Well, thank you for sharing your powerful story with us. I truly hope I will be able to go back to Ireland to hear you once again when the world finally gets back to normal but while things are still a little bit messy such as, for example, Clara’s nights of sleep, I will drive back to Clara and thank you, Helen. See you soon, I hope.

Helen Rochford-Brennan:

Yeah, I hope so. And it’s nice to meet you, Fernando, and thank you for taking the time to talk to me.

Dr Clara Domínguez Vivero:

It has been amazing to hear Helen’s story, and it really gave us an idea of how important sleep is and how tricky it gets for people living with dementia and also how much we may miss it if it starts to be disrupted and I actually think Fernando knows a lot about disrupted sleep, although I think in his case is voluntary. I normally do not get eight hours of sleep. An adult, on average, need between seven and nine hours of sleep daily for health benefits. Shorter sleep has been related with negative mindsets, depression, anxiety but also and more important for the aim of this podcast, lower cognitive functioning.

Dr Clara Domínguez Vivero:

It is not only about how long we sleep but also about the quality of it. Lack of sleep or disturbances during sleep are risk factors for dementia. For example, people suffering sleep apnea have been shown to have a 1.6 higher relative risk of developing dementia and then not only that but as we heard from Helen, sleep disturbances are commonly reported by both patients and caregivers. So let’s see what science has to say about that. We have the honor to invite Dr. Yue Leng who is an internationally trained epidemiologist. Yue is interested in studying the link between a sleep and neural degeneration in older adults and is currently developing her research at UCSF. Yue, can you tell us a little more about your work?

Dr Yue Leng:

Sure. Thank you, Clara, for that introduction. So my name’s Yue and I was trained as an epidemiologist and currently my work is focused on the relationship between different sleep disturbances and in relation to degenerative diseases, Alzheimer’s and Parkinson’s disease, in older adults. So part of my work is trying to figure out how our daily sleep and also circadian patterns could potentially influence our risk of developing Alzheimer’s or influence cognition and another part is trying to develop intervention studies and trying to use non-pharmacological or behavioral interventions to help improve people’s sleep with the ultimate goal of improving their cognition and maybe even improve preventing Alzheimer’s.

Dr Clara Domínguez Vivero:

Thanks. That seems amazing and super interesting. So now that we have just heard from Helen about her personal experience of how living with Alzheimer’s has affected her sleep, can you briefly explain a little more about how common sleep problems are amongst people living with dementia?

Dr Yue Leng:

Sure. What we already know is that sleep disturbances are indeed very common in older adults living with dementia and they can also suffer from a range of sleep disorders. For example, people living with Alzheimer’s, many of them can suffer from a symptom called sundowning, which refers to a state of confusion occurring in the late afternoon and spanning into the night and it can cause a variety of behaviors such as confusion, anxiety, aggression or ignoring directions. So that’s a very common sleep disorder happening in Alzheimer’s disease patients.

Dr Yue Leng:

Another common sleep disorder in patients with dementia is called REM sleep behavior disorder, also known as RBD. So this is a sleep disorder in which people usually physically act out vivid, often unpleasant dreams with vocal sounds and sudden, often violent, arm and leg movements during rapid eye movement sleep. So this is why this can be very common in patients with Lewy body dementia because of the specific pathological influences of the disease. In general, in patients living with dementia, prevalence of sleep disturbances can range from 20 to even 50 or 60%. So it is very common and many patients even report more than one sleep disorder and also we know that sleep disorder breathing or sleep apnea can be very common in patients living with all types of dementia so that is very common as well.

Dr Clara Domínguez Vivero:

Thank you, Yue. So let’s move now to the presymptomatic or before diagnosis time and we are all interested in prevention and we hear a lot about how good habits regarding exercise, food or social networks can reduce our risk of dementia. So how strong is the evidence that poor quality sleep or sleep disorders are also risk factors for dementia?

Dr Yue Leng:

We have actually done a number of studies that have shown that a range of sleep disorders or unfavorable sleep patterns could influence a risk of dementia. For example, many studies have found a U-shaped relationship between sleep duration and risk of dementia in that both short and long sleep duration, for example, less than six hours or more than nine hours of sleep per night, could contribute to increased risk of dementia. Many other studies have looked at insomnia which can be difficulty falling asleep or staying asleep and they have found that insomnia has been linked to risk of dementia as well. And also, we have looked at people living with sleep apnea and actually in a meta analysis we have done, we looked at over one million population and we found that those living with sleep apnea, they had… I think it was over 20% increased risk of developing dementia. The executive function is particularly influenced.

Dr Clara Domínguez Vivero:

Thank you. Those are high numbers but why is that? Why might sleep influence our risk for dementia? What is the mechanism behind it?

Dr Yue Leng:

So indeed, for the past 10 years or so, many studies have looked at the mechanisms underlying the relationship between poor sleep quality and risk of Alzheimer’s and some of these animal studies, they have used mice models and found that sleep plays a really important role in clearing out beta-amyloid, which we know as a very important Alzheimer’s related protein, out of the brain and they have also shown that after introducing sleep deprivation in the mice, they also see that elevated beta-amyloid in the brain. So this shows that sleep really plays a key role in the metabolism in the brain and help clearing out Alzheimer’s related protein from the brain.

Dr Yue Leng:

So that’s from the animal studies and for the past few years, they are also growing numbers of human studies that looks at the link between sleep and imaging data in the population and similarly, they found that sleep can be related to differences in beta-amyloid and also for one study, they found that beta-amyloid increased about 5% in the participant’s brains after losing a night of sleep. So that is how important sleep is in helping the older adults in the clearance of the Alzheimer’s related proteins.

Dr Clara Domínguez Vivero:

Thanks for that. So, okay. Let’s get practical. So is there anything we can do to improve our sleep patterns? And if we do something, what impact does such interventions have on cognition and risk of dementia?

Dr Yue Leng:

I think, the first thing really to note is that both older adults, their caregivers and also clinicians or just the general public should pay more attention to sleep in older adults and this could range from things like poor sleep quality, disruptive circadian, day night patterns or even daytime sleep habits like daytime napping habits. Our studies have found that, for some of these associations between sleep disturbances and dementia, if some of this sleep patterns might be picked up as early signs or early preclinical alarms of dementia and that might help people make early decisions about both their sleep habits and their cognition. So they can get into this process early to help prevent further slowdown of their cognition and in terms of intervention, I think, if we break this down for different types of sleep disorders, for things like insomnia, now we have medications. That’s probably one of the most common commonly used ways for intervention for insomnia.

Dr Yue Leng:

Although for older adults, we usually recommend a therapy called cognitive behavioral therapy for insomnia, which is a behavioral intervention and that’s nonpharmacological and our studies have also shown that the frequent use of sleep medications might actually be harmful for cognition in older adults. So we really want recommend more use of behavioral interventions such as CBTI as the cognitive behavioral therapy for insomnia. We’re actually running a study right now using the CBTI treatment, actually a digital CBTI treatment in patients living with mild cognitive impairment. So we are hoping this intervention might help both improve these patients’ sleep and also help slow down their cognitive decline in the long term.

Dr Yue Leng:

Another part of this is sleep apnea, as we know. So lots of studies have looked at sleep apnea, both sleep apnea as a risk factor for Alzheimer’s but also interventions such as using CPAP, which is a common therapy for sleep apnea and how that might help prevent Alzheimer’s or help slow down cognitive decline. So far, the evidence has been mixed but more research is really needed to, I think, look more into how different types of interventions might be beneficial for patients living with dementia and both sleep dementia and sleep disorders and hopeful that would help offer some new solutions for their symptoms.

Dr Clara Domínguez Vivero:

So according to what you said, I think clinicians, we can have a big role in dealing with the sleep issues. How do you think we should approach them in the clinic?

Dr Yue Leng:

Maybe I’ll start and I should really pass back to a clinician. So I think as we, as epidemiologists, see it, we do want to raise clinicians’ attention that you should pay more attention, not only to patients’ nighttime sleep but also daytime sleep and their 24 hour sleep, wake patterns since that could be both a signal and also a risk factor for their cognitive decline or cognitive aging and we think that has been largely overlooked in the past. So I think more attention should be paid to this and in terms of treatment intervention, maybe you can talk a little bit more about that.

Dr Clara Domínguez Vivero:

Yes. Well, I can talk about my experience in clinics and actually, I have to say that sleep is one of them main complaints of patients, generally. Not only patients with cognitive decline. I think we should pay, as you said, much more attention to sleep problems. They should be on our radar for all kind of physicians but even more for neurologists. I think it’s very important to devote time to the interview about sleep. Sometimes patients say, “I don’t sleep well,” and that’s the end of the interview and they receive a pill for sleeping. So you really have to see what is the pattern? What is the problem? If they are tired during the day and a long list of details.

Dr Clara Domínguez Vivero:

I think we also should have more access or ask for more sleep studies because I think they are very important and give us important clues about diagnosis and then we should be very careful with medications. Thank you so much, Dr. Leng. It has been amazing to hear you talk about this topic and I’m sure it has also been very informative for our listeners. That will bring today’s episode to a close. So thank you both, Helen and Yue, and that’s it for today.

Dr Clara Domínguez Vivero:

So if you would like to be kept informed about the latest research about advances in this field, why not join ISTAART Professional Interest Area for Sleep and Circadian Rhythms and then visit our website for more information. Thank you so much, everyone. Bye.

Voice Over:

Brought to you by dementiaresearcher.nihr.ac.uk in association with Alzheimer’s Research UK and Alzheimer’s Society, supporting early career dementia researchers across the world.

END


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