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Sparking interest and understanding in the epilepsies whilst bridging the communication gap between epilepsy patients, clinicians, scientists, geneticists – and the world. Hosted by Torie Robinson.
**NOT FOR CLINICAL OR PATIENT DECISION-MAKING*
Visit www.torierobinson.com & www.epilepsysparks.com.
Of course, the there is still significant stigma around epilepsy even in older patients because every time you say “epilepsy” to someone grown up or elder they say like “That's not me. I cannot have epilepsy. That's something that I had in a cousin and it was a child so I have I have nothing to do with that.”. And it's something difficult to explain to the people, to accept the diagnosis of epilepsy, to accept that epilepsy lives around us and lives with us during all our life. And, of course, the cognition. Both the seizures themselves and medications, and the evolution, the aging itself can affect memory and concentration and concentration in older adults.
We often think of epilepsy as a disease that begins in childhood. But did you know that older adults are among those who are the most likely to develop an epilepsy?! And what happens when epilepsy comes alongside other challenges of ageing, such as stroke, dementia, or memory problems? Well, today, neurologist and epileptologist Dr. Manuel Toledo joins us from Barcelona, in Spain, to explain why epilepsy becomes more common as we age, the challenges of diagnosis and treatment, and the exciting research that could transform care for older people!
This episode is sponsored by the Drug-Resistant Epilepsy Course organised by the Spanish Epilepsy Society - supporting education and public understanding of epilepsy.
Hi Torie, nice to see you back again. I'm Manuel Toledo. I'm a neurologist, epileptologist in Barcelona, in the larger university hospital in Barcelona where I ran my lab, even I'm right now in my lab working from here. And basically, we try to cover as much as we can from the research topics in epilepsy. We move from translational research (which means the cooperation between basic science and patients) and then a lot of research regarding psychiatric aspects, of course antiseizure drug developments, and other aspects which is which are really interesting that are the social aspects of the of the epilepsy.
Well, I think if anybody wants any backup of your understanding and support of the social aspects, but our episode about a year ago was about traveling with epilepsy, right? So, epilepsy affects or can affect all aspects of a person's life, really.
My charitybasically, my position there, is to support families and to support not only patients that I know that is really important for patients, is just to support families and giving them all the advice and the social support to get a better life, which is the final goal of my work in every day, you know. That that's my part of it.
02:56 Torie Robinson
What's your position in the charity and what's the name of the charity?
It’s the FEDE, which is Federación Española de Epilepsia . That's it. So, I work for that and I cooperate a lot with them and that's my position there. So medical advice in the curtain.
Love it, love it. So today we're going to talk about aging and epilepsy. It's not a very sort of popular topic. Because I guess older people generally aren't as cute, but it's not just children that have an epilepsy. We have people who are getting older who can either have an epilepsy or develop an epilepsy. So why is this an important topic for us to cover?
Yeah, well, basically, epilepsy has traditionally been thought of a condition of the young or children with convulsive seizures, but the reality today is quite different. Epilepsy is actually most commonly diagnosed at 2 extremes of life: in children with newborn epilepsies and then in elderly patients like over 70 years of age.
Over 70, did you say?
Yeah, let's say 65 which… because that's traditional, you know, but I think 65 years old people nowadays they are still young. They still work, they are healthy. If we move a little bit more in the causes that produces epilepsies in the elderly, I will say we will be more on the range of 70 years old or older. I would say that.
And why is this? And what sort of numbers are we talking about?
If we follow the graphs of epilepsy by age groups, you will see we have a high peak in the in the side of the children that decreased down in the adults. They still have new onset epilepsy because they have TBI with traumatic brain injury, which is quite common in the countries that they don't have prevention programs in the working places or driving. They drive without a helmet, the motorbikes, so they have accidents and they develop epilepsy. But in our setting it's like…. then we go and we have a high peak in the early population because we have causes that are becoming more frequent, which are strokes, dementia, brain tumours, all of them are causes of epilepsy, every time more associated with an increased aging of the of the global population.
And I guess if we think of, you know, now compared to say, like, 30 years ago, people are living longer, right? So, I guess that makes the numbers of people affected by the epilepsy in an older range higher.
If we think about 20 years ago, 30 years ago, even in our, in our countries, we have to think about the infectious diseases: HIV or tuberculosis, used to be one of the most important causes of death, or of course traumatic brain injuries in the in car crash or and so on. But nowadays they have remained very little in the frequency. So, we have avoided all those causes and then we have a population growing and getting older and as we all know we are getting problems, let's say social problems, with the aging of the population; and one of the problems is the neurological deterioration associated sometimes with epilepsy.
And I guess, ‘cause also, like, epilepsy often comes along with stroke for instance, doesn't it? And we know that older people often are more likely to have a stroke (just one example). Or older people might be more likely to have a fall and have that traumatic brain injury than people who are younger.
Yeah. We have bilateral feedback. People with epilepsy has more strokes, has more traumatic brain injuries, have more cognitive impairment and people with strokes or tumours or traumatic brain injury have more epilepsy. So, it's vicious circle.
What are the common things that people who are older and have an epilepsy, what are their challenges? And are they similar or different to people who are younger?
They are way, way much different. You know, it's a it's a project of life. I mean the challenges are really multidimensional. So, medically, if we think about older patients, they often have multiple coexisting conditions like heart disease, diabetes, osteoporosis, which complicates treatment decisions considerably, you know. There are real concerns about safety; as you say, falls during seizures are particularly dangerous, or driving restrictions - which is a main restriction in different areas; if you live in a in a city, in an urban site, maybe it's not as big issue, but if you if you live in the rural away from your city or away from your job, it would have a tremendous impact. Of course, the there is still significant stigma around epilepsy even in older patients because every time you say “epilepsy” to someone grown up or elder they say like “That's not me. I cannot have epilepsy. That's something that I had in a cousin and it was a child so I have I have nothing to do with that.”. And it's something difficult to explain to the people, to accept the diagnosis of epilepsy, to accept that epilepsy lives around us and lives with us during all our life. And, of course, the cognition. Both the seizures themselves and medications, and the evolution, the aging itself can affect memory and concentration and concentration in older adults.
A lot of the things you mentioned do affect younger people as well, but it's like they're just enhanced or just it's a bigger problem when you're older. Because you mentioned, like, osteoporosis, if you fall, you're more likely to break your bone. Also, I was thinking, older people are more likely to, let's say have lost their partner, or have fewer friends around them often, because as you get older, your friends are more likely to pass.
Probably, yes. We consider older people with epilepsy [a] fragile population. You know, fragile population; when you enter into that group it means that you are fragile for everything, for the side effects, for seizures. You don't want anyone older than 70 years old to have a generalised convulsion because probably there's a high risk to have serious injuries or a high risk of death even, you know, the you increase the risk of death. And of course, the social isolation is important. Sometimes it's not because the control of the seizures (which is usually, let's say easier with the with the antiseizure medication (they are more sensitive to the antiseizure effects of the of the drugs, something that
Oh!
…we still need to figure out what is the reason for that, but they are more sensitive to the adverse events.)). So, many of our patients still have, you know, some limitations and they have to have social life or to have active life, laboured, working or yeah. That's something that we need to face as well.
Just going back quickly to stigma: there's a chap I know and his mum, so she was older and developed epilepsy due to a brain tumour. And I said “Oh, I'm so sorry she has epilepsy.” and he said “No, she doesn't. She just had seizures and now she takes Keppra/levetiracetam, and she doesn't have seizures anymore. So, she doesn't have epilepsy.”. I said “She does. Maybe she doesn't want to believe she does, but unfortunately, she does.”.
Hopefully that will change. I think in people older… in Europe, let's say that older than 50 years of age, telling them that they have epilepsy is something that is not accepted. It’s not accepted by anyone. You know, if you get it into younger people and you see people like you or other patients that have shown their faces and say “Look, I have epilepsy, I'm and I'm here and I work and I have family and I have friends and I do my life with some restrictions, but I do my life.”. So, the concept of epilepsy has changed. In the ancient times, to have epilepsy... I remember a couple of weeks ago I was in a meeting in the in the north of Spain and I talked to the mayor of the of the city and she came to me “So what are you doing here?” “So I I work with epilepsy, we are the epilepsy group in in Spain.” and she said “Oh my goodness, I have a brother with epilepsy and that was terrible during my childhood because my family said we could never talk about the epilepsy of my brother and we had to hide that during many years and it's something that that has really changed my life, the epilepsy, my brother's epilepsy.”. And that is something that I noticed that it is still a big stigma. Even in someone that it's has to shown and it's a politician and has to be there and for her was like really tough to talk about epilepsy because she had a brother with epilepsy and it was forbidden at her house to talk about epilepsy.
Yeah.
So we nowadays people talk about that more naturally.
Yeah. I agree. I've really noticed that between generations… as awful as it is, especially in certain countries, especially generally in low to middle income countries, it's even worse, generally, but I do think that we've come on a great deal in the past 20 years. But it is hard to get through to the older people, as you say, they generally grew up with it just being something is you have to be so ashamed, and you have to (hide if you can). And they often don't anticipate it “coming out” when they're older. I do feel for people. It's hard to change the way that you think, isn't it, about something like this.
Yeah. Even, you know, when I became a doctor and I became a neurologist and I said “I'm gonna work in epilepsy.”, I remember my older ancestors, let's say that it was like (because I have a family of doctors, you know, they are all dedicated to medicine and many of the time were like surgeons, paediatricians), and when I say “No I'm gonna be working in epilepsy!” - so many of them (no longer alive) say ”What are you doing? What are you getting there? It's like getting in into trouble if you can move into orthopaedics or anaesthetics or something that you really make something, but if you're getting into deep into epilepsy is like you're kind of weird!
Haha!
… No one will decide that!”. So, that's something that even from your side and our side, like, doctors dedicated to epilepsy and say that loudly that's important for the modification of the stigma in, I think nowadays and in the short future that would be very common to talk about that.
I think we need to make epilepsy a more trendy disease to study and it's just as important as stroke and dementia.
As I say I have myopia. That's I have it so it's not I'm not discriminated we because of that. That's it.
And it's a very interesting disease as well. And also, don't you find it interesting that older people are more likely, as you previously mentioned, to get dementia or develop dementia, and much more likely to have a stroke, and then the epilepsy can often be… a kind of accompany that? And what's that like for people to experience, like say “3 in 1”, for instance.
Yeah. Well, it's a relevant factor and it's obvious that if people that develops epilepsy usually they have some degree, or certain degree of cognitive impairment. I even when I… someone comes to with a with a seizure to my clinic for first time, my first question is like “What is your cognition, how is your cognition doing?” or “How are you psychiatrically?”. If they say “I'm fully normal, I'm 100% right”, I say “Hm, difficult to be epilepsy. Maybe you have another cause of seizures [and] is not a epilepsy because you basically you have a brain dysfunction.”. And obviously, if you have a seizure, even when we say that you have no cause of epilepsy or non-lesional or whatever, I mean to have a seizure is nothing good for your brain and something is going on there. So, one of the topics/focus of our research in our centre is the relationship between cognitive impairment, dementia and epilepsy. So we are studying patients, young patients with new onset epilepsy and follow them up and trying to find biomarkers to figure out whether they will develop earlier dementia or not. It's something that we are trying to study all the way around. We are trying to find out where those patients over 60 years of age that have a new-onset epilepsy with no clear cause (like, we don't find any atrophy or stroke or anything); are they more prone to develop earlier dementia or not? It's something that we are working. [It] may be a little bit scary for people that has epilepsy, but I think it is really important because in the short future we will have drugs to avoid the progression of cognitive impairments in general. So, they will be candidates to receive a disease-modifying drug to avoid cognitive impairment. That's the goal of my results.
That is exciting. And I understand what you say; some people might find it a bit scary. Some people don't want to find out what their likelihood of developing something is. But, then we're doing similar things with dementia, right? People know or might find out, like, or see their mum and dad, they might have dementia. They know their risk is increased or likely to be higher than average. And so I think we should do the same with the epilepsy as well.
That's the basis of it. Because when you have a seizure is... because someone has 2 neurons or more than 2 neurons that they don't work properly. So, what's the what is the reason for that? We cannot remain calm and steady to say “Well, we have no lesion or we don't have any tumour or cortical dysplasia or anything, so we will remain calm.” So, you have to do something. Maybe something is going on there. If you have someone having recurrent seizures, it's because something is going wrong in that brain. So, we are trying to find out where those recurrent seizures may induce brain damage. And the most important thing is that we will have drugs or actions to modify that progression and avoid the cognitive impairment in people with epilepsy; which I think is one of the main concerns in adults with epilepsy. Rather than seizures, sometimes it's like the cognitive impairment. Like “Doctor, I… my memory doesn't work very well. I have like mild or slight seizures but my main problem is my memory or my psychiatric disorder, like my depression or anxiety disorder.”.
Thank you so much for saying that and for understanding that. Thank you. It couldn't be more true. So, when you have somebody older, who… you might… we might automatically think, oh, they've… oh you’ve mentioned this before, like, it could be a non-epileptic seizure that they might have, or they might describe something that sounds like a seizure, but it's not a seizure. And how do you kind of figure out if somebody is having epileptic seizures, what they're experiencing might be the side effects of medication they're already taking, or it might just be like the normal aging process. For instance, I have a… somebody that I met with recently who is in their late 70s and she was trying to cross the road and suddenly was like… and almost got run over. And I know some people might look at that and think, my God, is she having an absence seizure or is she just getting older and her reactions are not as quick? So how do you figure out what's happening?
Yeah, sometimes very difficult to do that and I think the sometimes elders are overtreated! You know, because at a time you go to the emergency room and you describe like a spell of anything and you receive a blood test and the blood test is normal, so you will receive levetiracetam. And no one will ask that. Because the diagnosis of epilepsy in the elderly is sometimes difficult because no… usually the EEGs are normal or they don't show interictal epileptiform activity and the MRIs are considered, like, negative because they don't have a clear collision that induces epilepsy. So, when a stroke is rolled out, so many doctors will say “Well, this is likely a seizure, we will load these patients on levetiracetam or any other drug so… and then we will avoid that patients to have seizures in case this is epilepsy.”. And the important thing of that is like “Have you ever thought about the impact of your treatment, which is really high in these patients.”, because as I say they are fragile patients. They are very susceptible patients to any side effect or adverse event. And it's difficult. So, I think the clinical experience is very important. You know what are the typical the seizure types that the adults make; it's like aphasia; they are not able to speak during a few minutes or they have, like, little… let's say absences, and during the few seconds, and they are often associated with a cognitive impairment. It's like when I ask them "So do you see any kind of spells? And what is the memory like? What is the cognition? What is the functioning in the every day's activity?". And then when you notice there is a decrease, something is going do going under. And of course we have to be very cautious on ruling out other causes like cardiac arrhythmias or diabetes, some mimics of seizures in in in in the elders.
Also, if you misdiagnose an epilepsy, it could also mean that you're missing a diagnosis for something else, which would significantly affect their quality of life and potentially increase risk of injury and death, right? If it was something else that you're not treating. And what you mentioned also, how the elderly, they might take the same dosage of a drug as a younger person, but it affects them more. Do we know why? And as a result of this, do you give them a lower dosage?
Yeah, we have some systemic explanation, like, they have lower protein levels, so… and the liver and kidney functions; they are let's say decreased, you know, and they are impaired. So supposedly that those drugs are in the higher doses in the in the blood. But there is something different. The brain must change and there is something in the brain probably the receptors and the neurotransmitters in the brain changes in the in the elders and it's obvious because we work differently from since we are young to when you we go grow older. And yeah, there is a obviously a much higher sensitivity to the antiseizure medication effect in the brain of the elders - for good and for bad, because we are able to control seizures with lower doses, but for bad, because if we load them with the regular doses that we use in young adults, they will develop adverse events and quite often serious adverse events.
What do mean by serious adverse events?
Unexpected adverse events. We are quite used to CNS related adverse events like somnolence, gate in instability. So, it's like for neurologists we live let's say comfortable with those kind of adverse events. We know what to do with that. We get really scared when patients develop like hyponatremia (which is low sodium levels in the in the blood) [as] that has/may have really real serious consequences. Or we induce kind of cardiac arrhythmias, you know, heart arrhythmias or patients finally end up in the ICU more easily.
Hmm.
So that's what we consider like serious adverse events which are unexpected, idiosyncratic, uncontrolled adverse events. The CNS-related adverse events, I would tell you, yeah, we are able to live with that because basically that's our life, like insomnia or depressive symptoms, somnolence…
It happens in younger people too.
Yeah, we are we are quite used to deal with that in our daily life. We are not used to have patients admitted, admitted to the to the hospital with, kind of, in the ICU or internal medicine taking care of them. So that's what we have to really take care of when at the time you treat elderlies.
This is a really good example then, I think of why… I mean I would say that ideally all people with epilepsy would see an epileptologist like yourself but I think, you know, given that example you gave of when somebody an elderly person goes to A&E, seizes and they just put them on levetiracetam, and they'll just think it's the regular amount. I think this is when we can really say we need to have specialist neurologists (epileptologists) helping these people when it comes to diagnosis, treatment, care, and to help with all the symptoms.
That's exactly my job. So, to be able to have good interpretations of what we have in the prescription recommendations of the drug and the patient we had in front of us. So, and I think it's of particular interest the control of epilepsy, not that much the seizures in the in the elders, because it's the holistic approach in the elders is probably… is more important in the in the elders.
Say we have a loved one of an elderly person/older person listening or tuning in now, what are their common worries and what do they need to be aware of when it comes to assisting/looking after or helping the older person with epilepsy?
o
You mean in the acute seizure or you mean in the in the chronic in the chronic care?
I mean chronic.
The day to day I will say check the sleep. So, sometimes people with epilepsy had a lot of problems with sleep. And I think the sleep quality is a good thermometer on how is epilepsy doing. When you have recurrent seizures, we have excessive medication, usually the sleep changes. You get more drowsy, you sleep more, or you sleep less, you have more fragmented sleep. So, I think the sleep it's a good thermometer. It's something that I use. So “How do you sleep every day?”. So in my recurrent out clinic visits “So, okay, you're seizure-free, you’re telling me that you're doing well, so what how are you sleeping, so how is your sleep doing?”, so they say “Regular I keep the same.” I say “Hmm those are good news.”. But I if I heard that they feel drowsy during the day, it's like “Okay we have a problem here. Is that seizures? They they are nocturnal seizures, they are change of medication, maybe concomitant medication.”. because my patient went to a psychiatrist and the psychiatrist changed the medication?” so I need to figure out what is going on on there. So, I will take care of that and something… because the seizures is something that I guess that is obvious because you see the people having a seizure.
Unless it's focal aware, it's not always obvious, is it?
Yeah, of course, you have to be aware of that and hopefully in the shortcoming future we will have different devices to alert whether seizures are go happening or not. But the thing [is] even if we have or we don't have seizures, I think that to check the 3 components of the of the epilepsy which are as much important as these seizures, which are: the sleep quality or sleep structure, the psychiatric status (so depressive symptoms or anxiety. Unexplained anxiety or depression is something is going wrong here), and then cognition. What I do you do every day? And if you're able to keep your routines. I find, sometimes, and quite often my patients like “I was working but finally I wasn't able to keep my work.” or “I was in school and a special school or not a special school and I have to quit because I wasn't able.”. And they're always like different excuses like “No, I didn't have like good relations with my mates.” or so on. But it's something that I need and I always suggest to explore and figure out what was going on there to check whether the epilepsy is affecting that person beyond the seizures.
And then I guess, you know, also worth mentioning is that it's not all about drugs, is it, when it comes to epilepsy. So, if you have a family member who says “Okay, my loved one is experiencing these sleep issues or they are or not seizing.” or whatever it is, you can advise them on maybe lifestyle changes and things like that.
Yeah. I think the drugs is a little part of this. I always have an interview and I need the caregiver… the person that lives close to… sometimes they are neighbours - I need someone to live nearby and to talk to them to explain what is the problem. Like because sometimes even they are arguments between partners, or the… usually, you know, the family like the girl with the mother and so on. And all they need is just to have a good talk, explain what is the disease like. They don't need to be aware 24 hours of anything that is happening all around. They have to accept the uncertainty of the seizures because otherwise they don't feel free to live and it's something that is really important - to talk to the affected people. And that's one of my main areas of work is trying to work with the people living with relatives, caregivers and parents and even sons and daughters, try to explain what is epilepsy like and where the deficits that epilepsy it's associated with and how to face them. That's a lot of work because you can do a lot of things with drugs or with surgery with anything [but] if you don't explain what is the disease like you will have problems.
Well, you've basically said, overtly said that, said this, that the epilepsy doesn't just affect the person with the diagnosis, but it affects the people around them, the people that care for them, the people that love them, or just the people who feel responsible (for whatever reason) for helping them. It adds a lot to their day and, you know, to their stress levels often, doesn't it? So, for them to understand a bit more about it can make what they're doing, I think, a little bit more straightforward and a bit less stressful.
Yes, of course. I think it's very important. At the time we have the diagnosis of epilepsy, even I take sometimes the affected person and I get sometimes with the mother or the parents or the or the relative close by and I say “Okay, come here, I'm gonna talk to you without the patient (if the patient allows me to do that). I'm gonna explain to you what are the restrictions and what your attitude must be around that person. So it's like you don't need to push and, you know, drown that person of the worries and explain the anxiety. You cannot transmit the anxiety
Yes!
…to that person that has enough with the diagnosis.”. And it's something that is really important. And I talk to them individually to tell them how they must face someone beloved with a chronic disorder that may manifest with unexpected seizures. That's really important.
This is going to worry some people, our conversation, I guess, like “Oh my god, is my loved one going to develop… or will I develop epilepsy?!” if they don't have it now? Will they develop it later? You're doing lots of research into this, as you said. So why should people not be nervous? And where do you see us, like, say, in 10 years’ time? What is likely to be the outcome of your research, do you think? Or the outcome of other researchers in the world? Where will we stand when it comes to treatment and prevention of epilepsy in older people?
Yeah. Well, I think we are in an excellent position. If I have to consider my position nowadays to what I have done in the last 30 years of research, I would I think that it we are in the best positions because finally we are working in networks. Not only with, I mean, patients and hospitals and basic science, everyone, but I'm working with other specialities. I’m working with cardiology, in heart specialists with dementia. So, we are working in a big network, so we, are getting devices that have been developed for diabetes, so why cannot we use that for epilepsy? Or if someone is working on dementia and Alzheimer's, why cannot I why cannot I use that research and share that with epilepsy another way around? If we think about the EEGs, they are being quite used in cognitive impairment, in primary cognitive impairment. So that's the good news for the epilepsy. And I think in 10 years the scenario for patients and for everyone will change a lot and finally we will get a way much better quality of life and people with epilepsy will be able to travel abroad easily or to work anywhere. That's it.
Everyone, I'll put the link to our episode about traveling overseas below this episode. Do check it out. It's fun, positive, and shows that, you know, many, many people affected by epilepsy can travel if you prepare, if you find like support in the country you're going to. And, you know, just like the support of your organisation today, Manuel, there are other organisations like that around the world. So, everyone check that out. And I'll also include the link to your charity or not-for-profit as well below this episode. Please everybody have a look. Thank you so much, Manuel.
Okay, thank you, Manuel.
A huge thank you to Manuel for joining us again! He’s given us great reminders that epilepsy can affect anybody, at any age, and that good care is about so much more than controlling seizures! It's also really encouraging to hear how research across different medical fields shall be improving diagnoses, treatment and quality of life for older people with an epilepsy. Do check out our previous episode with Manuel about travelling with epilepsy, and thank you to the Drug-Resistant Epilepsy Course organised by the Spanish Epilepsy Society - for sponsoring this episode and supporting education and public understanding of epilepsy. See you next time!