Dementia Support Line
What is the link between seizures and dementia?
There are some symptoms of dementia that are more commonly known, such as memory loss. Seizures are a less common symptom of dementia that are not as understood. Hear from one of our dementia researchers who has been studying seizures in people with the condition.
How common are epileptic seizures in dementia? Who is most at risk of having them? What do these seizures look like? What effect do they have on how someone’s memory changes over time?
These are the questions that I have been researching since starting my PhD in 2016. I'm a student funded by Alzheimer’s Society as part of the University of Exeter doctoral training centre.
What do we know about seizures and dementia?
People with dementia are at risk of having epileptic seizures. We’ve known this for a long time – it was described by Alzheimer himself in 1911.
However, how common they are remains unclear. This is because epileptic seizures can often be subtle.
There are two common types of epileptic seizures:
Generalised tonic-clonic seizures
Most of us are familiar with the kind of epileptic seizures we see on TV or in films. People become unresponsive, they fall to the ground, become stiff and their whole-body shakes in a convulsion.
Generalised tonic-clonic seizures are hard to miss. But this is not what most epileptic seizures look like.
Focal onset seizures
Most epileptic seizures in people with dementia are known as focal onset seizures. These can involve brief periods of increased amnesia or unresponsiveness. We see involuntary repeating movements, often of the hands and arms, or of the face (chewing, lip-smacking or swallowing).
Understandably, the latter are more easily missed, especially as the person affected will often quickly be back to normal afterwards.
Who might be affected by seizures?
For a long time, researchers believed epileptic seizures occurred only in people who had long been diagnosed with dementia. It was thought they were a reflection of how much the brain had changed and shrunk because of it.
However, more recent research has suggested that seizures can occur early-on in Alzheimer’s disease. In some people, seizures may happen even before memory problems become apparent.
As part of my research, I recruited people from the local memory clinic here in Exeter. We asked them questions about epilepsy.
It quickly became clear that most people don’t know that having dementia, particularly Alzheimer’s disease, can increase your risk of seizures.
In our group, around 1 in 8 patients with dementia described episodes which we believe could have been epileptic seizures.
We interviewed our participants one year later and found that those who had described having had epileptic seizures previously performed less well on memory tests than those who showed no evidence of epilepsy.
Why do people with dementia develop seizures?
Ultimately, anything that changes the structure of the brain can cause seizures.
This happens for some people after a stroke, a head injury, or with a brain infection like meningitis. A similar problem is happening in the brain in dementia. As cells in the brain die and the brain shrinks this can lead to epilepsy.
In addition, we know that two proteins that build up in the brain of people with Alzheimer’s disease – amyloid and tau – affect how the brain’s nerve cells communicate with each other.
Sometimes these nerve cells can become 'hyper-excitable', meaning they can behave uncontrollably, causing epileptic seizures.
Can seizures be managed in people with dementia?
There is good news. There are medicines that are effective at reducing, and hopefully stopping, epileptic seizures.
If you think that you or someone you know with dementia may be having epileptic seizures, you should tell a doctor. They might want to perform some extra tests and may want to start some extra medicines to treat this problem.
What we don’t know yet is whether starting treatment for epilepsy might help to slow down dementia and whether it might help keep people’s memory function better for longer.
When is anti-seizure medication typically prescribed?
Anyone can have an epileptic seizure, but most people who have a single seizure will not have any more. As a result, doctors do not usually prescribe anti-seizure medicines in someone after a single seizure.
While they can be distressing to witness, people who have a seizure typically return to their normal selves soon afterward with no long-term effects.
However, doctors are likely to look for causes as for why a single seizure may have happened.
In people with dementia, the fact that they have dementia can be the ‘why’, but other causes should also be considered – including stroke, head injury, and infections.
If someone has a second seizure it suggests they have epilepsy, so starting anti-seizure treatments would be appropriate. Usually this involves a discussion with a neurologist to see which treatment option is most suitable.
However, telling the difference between single and multiple seizures isn’t always as straightforward as it sounds. For example, if someone has multiple seizures over a few hours (without complete recovery between them) this can still count as a single seizure.
If someone is having a prolonged seizure (where the person is unresponsive for five minutes or more) it’s likely that doctors would want to administer emergency treatments – usually an injection – to stop the seizure from continuing.
This treatment is important, as seizures can affect someone’s breathing as well as their heartbeat.
Sometimes people with prolonged seizures may need to be admitted to intensive care to keep them physically stable while they recover.
Why might a person with dementia not be prescribed anti-seizure medication?
If a person living with dementia has a single seizure, doctors may decide not to prescribe an anti-seizure medicine – even though having dementia means the person has a higher risk of having further seizures.
There can be several reasons for this. Some doctors may be concerned that starting an anti-seizure medicine could interfere with other important medicines that the person is already taking.
Others may be concerned that an anti-seizure medicine could cause side effects or make dementia symptoms worse.
Sometimes, however, starting an anti-seizure medicine may actually help a person’s dementia – at least over the long-term. This is because people who have more seizures in dementia tend to have a faster rate of cognitive decline, so preventing further seizures with medicines may stop this accelerated decline.
Newer anti-seizure medicines are also less likely to interfere with other medications or cause side effects.
This article was first published in 2019 and most recently updated in September 2022.
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Emily
saysJoe H
saysTom
saysJoe H
sayscaroline
saysMrs Julie Tombs
sayscaroline Baldwin
saysS.
saysBeryl Reid
saysbev
saysBilly
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Alzheimer's Society
saysHi Billy,
Thanks for your comment, we're sorry to hear about how your seizures are affecting you.
This blog is more about how seizures can sometimes be an early symptom of dementia, rather than seizures themselves actually causing dementia.
It sounds as if you’ve had regular seizures for some time now and it’s causing noticeable problems with memory and thinking. Unfortunately, this is common for someone living with epilepsy that’s difficult to control. But for someone so young it’s very unlikely to be dementia.
Most people living with epilepsy are still able to do everyday activities by themselves – even if they might make more mistakes or take longer to do them. Also, epilepsy doesn’t always get progressively worse over time in the same way that Alzheimer’s disease or other types of dementia do.
We'd strongly recommend speaking to your GP if you are concerned about your seizures.
Additionally, Epilepsy Action has some excellent information that helps to explain the cognitive and emotional effects of epilepsy: https://www.epilepsy.org.uk/info/health-matters
They also have a free phone helpline on 0808 800 5050 which is staffed by people who understand the particular challenges of living with epilepsy. You can find out more about their support line and opening hours here: https://www.epilepsy.org.uk/info/support/helpline
We hope this helps for now, Billy. Wishing you all the best.
Alzheimer's Society knowledge team
Vijay Raj P
saysHi,
My father 76 old, was suffering from hydrocephalus, which went unnoticed by us for years, later one day he went missing and we Brought him home after four days search. Because of hydrocephalus, he is having dementia, last October I got my father VP shunted, he was keeping fine, three days back he had epileptic seizures, and we got him admitted in ICU, now he is shifted to ward, and condition is stable, My query is, does vp shunted patients are prone to epilepsy, doctor says there is loss of oxygen to the brain, my father is also having problem with lungs due to tb on his child hood, , there was seizure first then he started gasping for air. Do the seizures repeat in future after treatment..
Please comment, thank you
Hi Vijay Raj P,
Thanks for getting in touch. We're glad to hear your father is in a more stable condition now.
Unfortunately, we cannot comment on individual cases - your father's doctor would be the best person to ask about what to expect following treatment and how to best care for him.
Our Dementia Advisers can provide emotional support and practical advice on 0333 150 3456. (Opening hours and further details at https://www.alzheimers.org.uk/dementia-connect-support-line)
Please do talk to the health professionals on your father's ward, and call us if you need someone to talk to.
We hope this helps for now,
Alzheimer's Society blog team
Surya
saysHi, My mom is diagnosed with Alzheimer's and has been on treatment with Donepezil and Memantine since past 6 years. Lately she got a seizure and went unconscious. She was prescribed Brivaracetam to control the seizures. Is it ok to continue taking Donezepil and Memantine along side antiseizure medicine?
Hi Surya,
Sorry to hear about your mom's recent seizure - it sounds like it could have been stressful for you both.
I'm afraid we can't give medical advice through the website. It would be best to talk to your mom's doctor or check with the healthcare professional who prescribed the medicines.
If you need any other information, advice or support to help with your mom, please call our Dementia Connect support line on 0333 150 3456. You can find more details about the support line here: https://www.alzheimers.org.uk/dementia-connect-support-line
All the best,
Alzheimer's Society web team
Rudy Ruggles, Jr.
saysI greatly appreciate your sharing the findings of your research. Given that this piece was dated as being written a couple of years ago, I expect that you have received your PhD by now - June 2022.
I was specifically interested in learning more about the relationship between Alzheimer’s and seizures. The reason is that my wife, early 70s, has developed ‘classic’ Alzheimer’s, diagnosed around a year ago, and has just begun episodic seizures.
I am a scientist and Board Member at the J Craig Venter Institute (JCVI), and have exceptional access to research, and researchers. However, on this subject, my 1st enquiry was to the Alzheimer’s Association website, and then to your paper.. Thank you, and tell me where you work currently if you would.
Hello and thank you for your comment on this article. We’re sorry to hear about your wife’s recent diagnosis.
We have not been able to get in touch with John Baker recently. He worked with us as part of the Doctoral Training Centre that we funded at the University of Exeter, it now seems he is now at UCL. We know there is a lack of evidence-based research into the relationship between Alzheimer’s disease and seizures, and this project was set up to help answer some of these questions.
To find out more about the research he was involved with in Exeter, you may wish to use the ‘Contact Us’ form on the TIME Project website (https://projects.exeter.ac.uk/time/contact.php) – this was set up as part of the College of Medicine and Health from the University of Exeter.
In the meantime, you can call our advisers if you would like to speak with someone about receiving practical or emotional support. Our Dementia Connect support line is open seven days a week on 0333 150 3456. More information on opening times, and other methods of contact, can be found here: https://www.alzheimers.org.uk/dementia-connect-support-line
Alternatively, we have an online community called Talking Point that may be of interest. Here, people with dementia and others share their experiences and offer advice to people going through similar situations. You can browse the conversations within the community or sign up for free: https://forum.alzheimers.org.uk
We hope this is helpful for now, and best of luck with your ongoing enquiries.
Alzheimer’s Society Research Communications
Yvonne
saysHi, my dad of 83 has dementia, he has been taking situations where he looks like he is sleeping but he is not responding when we try to waken him, we have had to bring the paramedics out to him on these occasions as they last anything up to 2 hours, they do not know what is causing them, he does not respond to us trying to waken him by speaking or shaking his arm and they had to on one occasion give him a shock to the tip of his finger to bring him around, when he comes around from any of these he is always fightable and the strength he has is shocking, he is then very tired for the rest of the evening. Does anyone have any information as to what these can be, are they a form of epilepsy? Advice would be grateful.
Hello Yvonne,
We'd recommend speaking with the GP about your concerns - they will be better placed to advise on your dad's situation.
It sounds like you might benefit from joining our online community, Talking Point. Here, carers and other people affected by dementia share their experiences, and offer support to people going through similar situations. You can browse the conversations within the community or sign up for free: https://forum.alzheimers.org.uk
We'd also recommend speaking with a Dementia Adviser for dementia information, advice and support. Call our Dementia Connect support line on 0333 150 3456. More details (including opening hours) and other support services are available here: https://www.alzheimers.org.uk/dementia-connect-support-line
We hope this helps for now, Yvonne.
Alzheimer's Society website team
Yvonne
saysHi, thanks for your reply, we have brought the episode’s up with the doctor but they don’t seem to have an answer, it is so hard to get him to sit or stand for tests.
Thanks again for your reply and links.
Kay Macdonald
saysHusband had brain surgery to control late onset epilepsy. Epilepsy meds did not control the seizures hence the surgery for partial focal seizures. The surgery worked but I'm wondering about long term ramifications. His personality has changed... illogical, overly emotional, cranky, a bit paranoid at times. He has memory issues which I was prepared for as it's a known outcome of the surgery. My question is...are later life epilepsy and brain surgery linked to Alzheimer's?
Hello Kay, thanks for your comment.
This is a difficult question to answer, and we would recommend speaking to your doctor about your concerns. The diseases that cause dementia, including Alzheimer’s disease, are very complicated and researchers are still trying to understand what the underlying causes are. It is best to speak with a healthcare professional about what you've noticed and possible outcomes from your husband's surgery.
If you need any support with your husband's memory issues, we're here for you. Call our Dementia Connect support line on 0333 150 3456 to speak with a trained dementia adviser who can give you information, advice and support. More details of the support line can be found here: https://www.alzheimers.org.uk/dementia-connect-support-line
We hope this helps, Kay.
Alzheimer's Society website team
Stevie
saysi’ve been looking everywhere for an answer and i can’t seem to find one. can a dementia patient be diagnosed w/ pnes (pseudoseizures)? my mother-in-law has dementia and she’s been having cases of seizure like movements, but there’s no indication of a seizure on the EEG? it’s so confusing :/
Hello Stevie,
Sorry to hear that your mother-in-law is experiencing these movements. That does sound confusing.
It's difficult to give an answer about what may be happening here without more information. We would strongly recommend talking to a doctor or medical professional about your mother-in-law's symptoms and whether it could be related to the type of dementia she is diagnosed with.
If we can help with anything else related to your mother-in-law's dementia, please call our Dementia Connect support line on 0333 150 3456. Our dementia advisors are available to give information, advice and support. More details of the support line are available here: https://www.alzheimers.org.uk/dementia-connect-support-line
I hope this helps, Stevie.
Alzheimer's Society website team
Laura Imboden
saysMy husband, age 80, began having seizures about a year ago we think. He is a runner and was sent via flight for life to the hospital during a run. Unfortunately no one thought seizure but only heart. Nine months later he had another while in bed w me present which sent us to ER. Then another which I videoed, also in bed, three weeks later. Shaking in bed for 2 minutes perhaps followed by huge noisy breathing. Diagnosis official then after eeg and mri. He now takes Keppra, one of the side effects being short term memory issues. Has not had one since but his memory is an issue. Our neurologist says he has shrinking brain left temporal lobe. He still kind of passed an informal dementia test a couple weeks ago, but his short term memory lapses are. Noticeable. And he is very “cranky”. Is this Alzheimer’s on the way?
Hi Laura, thanks for getting in touch.
If you are based in the UK, we recommend speaking with one of our dementia advisers to discuss your husband's situation further. They will be best placed to provide you with dementia information and support relevant to you. Please call our Dementia Connect support line on 0333 150 3456. More information on opening times: https://www.alzheimers.org.uk/dementia-connect-support-line
If you're based in the US, please contact the Alzheimer's Association helpline: https://alz.org/help-support/resources/helpline
Or if you're based in Canada, please contact the Alzheimer's Society of Canada helpline: https://alzheimer.ca/en/Home/ContactUs
We hope this helps for now.
Alzheimer's Society blog team
Sarah Sweeney
saysI was absolutely floored reading what Laura experienced with her husband. At first, I wondered if my mother had actually made the post. My father, who is actually a cardiologist with a rare cardiomyopathy suffered his first seizure lasting at least 3 minutes a little over a year ago. My mother said she fought to hold his shirt to keep him on the bed his seizure was so violent. Afterwards, it took roughly 25 minutes before he was responsive. I tried chest rubs , yelling etc.and he remained with low rumbling breathing. When he did come out of it, he had no recollection of what happened and his cognition was greatly declined. The doctors did MRIs Eegs etc. but nothing to explain the seizure.
His second seizure happened about 2 wks ago. It was exactly like the first just a year apart. . This time the doctors did a deep dive on his cardiac monitor (which was implanted while in the hospital after the first) expecting to find a run of syncope that could explain the seizure. They found nothing and ruled out any cardiac reason. They repeated the MRI and found no changes from the first one. He was started on Keppra and has returned home . His memory seems a bit worse but he also is unable to sleep at night. There also seems to be a marked increase in depression and aggression. Alzheimer’s was not mentioned to us by any doctors but is mentioned as likely on the discharge and consult notes. This has been a heartbreaking time for our family as he was actually still practicing medicine before he had the first seizure. My heart goes out to Laura- and everyone that is coming to the realization that even in a city like Boston , a beacon of healthcare, that it is possible to go so long without answers. I am shocked that in fields that touch so many, in actuality there is still so much to learn. For those with or suspected of having the disease and those that love them, living in fear of another seizure and not knowing what to expect either in the short or long term is
Is incredibly hard almost paralyzing. Thank god for forums like this or I would believe I was the only one with similar experiences and obviously that is not true. Hopefully, the medical community is taking note and there will be some long overdue focus on the correlation between seizure and memory/dementia.
Laura
saysThank you so much for your reply to my post, Sarah. It does seem like my story and that for you father are eerily similar.
Dementia was a word I really hoped to not have to use after it became apparent that my husband's seizures and subsequent scrip for Keppra were causing worsening memory problems. He is still running, and he is driving again with no "forgetting" issues so far, but he seems to have some balance problems occasionally and crankiness and memory are more pronounced. We are both trying hard to just appreciate each other. I'm thankful that we were finally given a diagnosis after 9 months of wondering, but it does seem that the medical community in the ER doesn't have the resources for doing tests as they are needed. Had he had the EEG the first hospital stay in addition to all the heart stuff, we'd have know then and there.
Prayers for you and family.
Linda Wiseman
saysI’m so happy to have found this forum. My husband began having nocturnal seizures every 2-4 months apart. They are grandmal full convulsions. Unconscious, runs about five minutes from start to finish. And then about 10 minutes of a blubbering hard breathing. He takes a good 30 minutes to come around it know who he is and where we are. He’s had seizures at home he’s had seizures on vacation. There’s been no rhyme or reason. He was put on Keppra. Continued to have seizures. They continue to up the dose. He continue to get more agitated distant. One day about a year ago he decided to stop the Keppra. He didn’t tell me for three months, but I noticed a complete personality change. It was noted by others as well. His seizures became more frequent and he’s on a new medication now and doing better. However he has has AC complete personality change. We’ve been married 32 years. Plenty of ups and downs. He’s always been mostly and an emotional partner. He is now overly affectionate, very protective. He seems to be in his own world. He has memory loss and doesn’t remember vacations within the last 20 years other events as well but significant events. Are doctors have not been able to tell us why he has the seizures. He has had every scan done under the moon. Any advice? This is so hard
Laura Imboden
saysYes, we're not alone. I too am glad to find this site.
I'm sorry, Linda, for your experiences but have no answers. So far the Keppra has kept things at bay for my husband but who's to know what the future holds. I do remember that one should not quit cold turkey or more seizures result. So far so good for us and I hope what you have gone through is not in our future. I'd be interested to know the name of your new meds.
We are on this site because we know what we are afraid of! Seems we're going down that path though.
Karen
saysElaine
saysHi this is sounding very similar to what happens to my mum who has later stage dementia in fact it is now 6.20 am and she had one early hours 3.30 this morning and they are terrifying, everytime my mum has had a brain scan nothing shows that she is having seizures. She has one roughly every 3 weeks and only last about 2 minutes her whole body convulses and sometimes she froths at the mouth the noises she makes are also terrifying she is normally unresponsive for about 20 mins then goes into a normal sleep for quite a long time. As these fits always happen through the night and my partner works night shift I'm nearly always on my own and I find them so distressing my mum is also unaware that she's had a seizure. Thanks for your post as again I was totally unaware that seizures can happen with dementia
Laura imboden
saysShe must have an EEG within 24-48 hours of the seizure or the activity. Take to ER and ask for that test. MRI wouldn’t hurt either.
Ken
saysOver the last 2 years my wife has been suffering worsening performance of short term memory; we have followed the normal route of visits/telecons with GP, hospital assessments and consultant visits, leading to a diagnosis of MCI. We have received lots of advice from medical staff, support workers, booklets, brochures, zoom meetings and webinars, but I felt after a very scary tonic clonic seizure occurred at 01:00am followed by A&E, I needed more information. This event was followed 10 days later by 3 focal auras between 07:30 and 11:00am and meant another lengthy visit to A&E.
She has since been diagnosed with temporal lobe epilepsy and is now on anti-seizure medication, the seizures now appear to have ceased.
I had started a diary in early 2021 and recorded how there had been days of particularly poor memory with headaches, nausea and lack of appetite. It became apparent that there had been occasions where my wife had probably had a mild seizure during the night which was then followed by a bad day; there had been potentially 6 of these events plus 2 during the day witnessed by someone else.
I searched for links between seizures and dementia online and found a wealth of information that appeared to describe my wife’s condition. I began to think that if only someone had said to me that with memory loss and MCI I should be aware of the risk of seizures and given me an understanding of how to recognise them I could have picked up on them much earlier. It did seem to me that particularly with the later seizures there had been a subsequent impairment of short term memory.
I then found that my feelings were reflected by researchers in “Seizure: European Journal of Epilepsy 71 (2019) 83-92” and said exactly what I felt should happen, quote:
“It is clear that patients and their carers are rarely aware themselves of the risk of epileptic seizures in dementia and have not been prepared to recognise them if they occur. Providing education about the risk of epilepsy for those caring for people with dementia would help to identify patients with seizures earlier in the clinical phase of their illness and therefore increase the window of opportunity to provide antiepileptic treatment."
If we had been warned of the risk of seizures then my wife's temporal lobe epilepsy might have been diagnosed much earlier, by missing these opportunities I believe that she is suffering more than she otherwise might have been. There have been numerous opportunities to have informed us of the risk, I even broached the subject with a consultant neurologist and it was dismissed as being highly unlikely that there was a link.
Steve
saysI had seizures for 41 years take it all and be controlled by the removal of the memory part of my brain on the left side. I’m 16 but I can’t read a page and a book I have no memory or very little of going to college for my kids growing up