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 medications 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 medications 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.

We have learned so much about the brain – but there is still so much to discover.

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A couple of years ago my father-in law had an ‘episode’ where he wandered off in the night and didn’t know where he was or where he had been. He had been fine up until then. He has not had anything like it since however, his memory has declined considerably and to me is showing all the signs of dementia. My mother in law is in denial and just believes it’s happened because of this episode. Has anyone else experience anything like this? I’m not sure what advice to give them

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Hi JC, thanks for your comment.

We'd recommend calling our Dementia Connect support line on 0333 150 3456. You can talk to one of our trained dementia advisers who will listen to your inlaws' situation and offer you advice and support. More details of the support line (including opening hours) are available here: https://www.alzheimers.org.uk/dementia-connect-support-line

You might also benefit from connecting with other people affected by dementia within our online community, Talking Point: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-on…

In the meantime, here's some guidance on what to do if you're worried about someone else's memory problems: https://www.alzheimers.org.uk/memoryproblems

And information on walking about, which you may find useful: https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/wal…

We hope this helps.

Alzheimer's Society blog team

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My younger sister aged 63 is in late. stage Altzheimers and suspected Picks disease. She is in a nursing home and cannot do anything for herself. Last Saturday she had a seizure for the first time, where she was staring eyes open, fixed posture, mouth open and completely unresponsive for about an hour and a half. The paramedics said all her vital signs were fine, and it was agreed not to take her into hospital and best left looked after in bed. When she came round she behaved as though nothing had happened, and was clapping and strange singing type sounds as she often makes. The GP is going to do blood and urine tests to check for any underlying infection, and possibly give her seizure medication. Other than that, family and medical staff agree that she is best left comfortable and monitored in the home. I had no idea about the link between seizures and dementia until I just saw this article even though both our father and his mother had Altzheimers. It’s such a cruel disease, and all the children from my sister and myself and their children are concerned about the risk of dementia for themselves in case it is genetically in the family.

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My mum was admitted to hospital on the 12th June after taking a seizure, she had a ct scan done and we were told that she was in the early stages of dementia. Her father had Alzheimer’s so it was something I kind of expected but never wanted to actually happen. On Saturday she was admitted to hospital yet again after taking another seizure, this one lasted for almost three minutes and took most of the day before she started to respond to me in the hospital. The doctors said she also had taken another one on the way to the hospital but it only lasted seven seconds. Mum also is a carrier of a condition called Leber Hereditary optic neuropathy, my nephew was diagnosed with it two years ago and is losing his eyesight. Mums great grandson has also been diagnosed with the same condition and he’s only four. I know very little about Alzheimer’s but with everything else mum has going on I am so worried about her, she’s in a nursing home which means as she was in hospital at the weekend she now has to isolate in the home for fourteen days which is breaking my heart.

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I am 37 years old and have epilepsy. I recently started noticing me forgetting certain things that happen during the day and also seem to forget where I’m at sometimes and my purpose for being there. It’s only happened a few times recently but definitely something that has worried me. I’m assuming it’s from my past seizures but I am really trying to get some answers. Anyone with the Same type of experiences?

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My dad (78) has recently started having seizure like episodes, completely out of the blue. He has not been diagnosed with dementia / Alzheimer’s although he has been referred for this as the signs are becoming more and more apparent however the doctors seem quite dismissive over the fact that it is not related at all. The only person who has said it could be related is the A&E manager who was on duty the night my dad was taken into hospital following one of these seizures. Any help or advice would be gratefully received. My dad is extremely depressed now as he has gone from being a very fit man with his independence to now relying on other people for lifts to places etc…. and to also have his exercise options limited. Myself coming from an NHS background, I am becoming increasingly frustrated at the lack of diagnosis for my dad.

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Hello Claire,

Thanks for your comment, and really sorry to hear about this experience with your dad.

We'd always recommend speaking to your doctor first if you're worried about memory problems, so it's great that you've done that already.

If this has left you frustrated, then you can also speak to one of our dementia advisers for more advice about assessments and diagnosis. To do this, just call our Dementia Connect support line on 0333 150 3456.

The support line is open seven days a week:

9.00am to 8.00pm Monday, Tuesday and Wednesday
9.00am to 5.00pm Thursday and Friday
10.00am to 4.00pm Saturday and Sunday.

Hope this helps, Claire.

Alzheimer's Society blog team

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My mom was 67 when she died from dementia. She had frequent seizures and brain shrinkage.

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I am dealing with now at 52 years of age and doing my best to remain hopeful and optionsitc,but it's down right hard at times. I do my best to take the resolve it's never in life what occurs but how we respond to it emotionally.

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Hello Kelly

We would strongly recommend speaking with one of our dementia advisers by calling the Dementia Connect support line on 0333 150 3456. This is a great way to get dementia information, advice and also emotional support. (More information about the support line, including opening times, can be found here: https://www.alzheimers.org.uk/dementia-connect-support-line)

You may also benefit from talking with other people affected by dementia within our online community, Talking Point. Feel free to browse and read others' experiences, or create an account to reply and connect with others. You may find more similar situations to yours there: https://forum.alzheimers.org.uk/

Hope this is helpful for you, Kelly. Please don't hesitate to call our support line any time you need advice or someone to talk to.

Alzheimer's Society blog team

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My mom is 70 years old and experienced what we now know to be absence seizures. At first she was diagnosed with epilepsy about five years ago but in the past year after uncontrolled seizures through all of this time despite trying several combinations of seizure medications (including Kepra, Donepezil, Lamotragine, Briviact and now a newer trial drug XCopri) she has finally been diagnosed with Alzheimer's disease which I suspected and had been questioning doctor's all along. Her seizures are just like many here have described, blank staring, shaky, body going limp or frozen, some light shaking. Afterwards her memory is terrible and she often loses short term memory from the day before and after. Her seizures have increased drastically in frequency and no doctors have been able to pinpoint what has caused this or been able to control it. Her memory in the last few months has gone from mixing up her grandchildren's names to not even recognizing them. This is an awful disease but this rate is terrifying and I don't know where else to look for help. Would love anyone's suggestions, input or personal experiences. Thank you for your time.

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My mum was diagnosed Alzheimers at the beginning of the year but knew something wasn't right a long time before. Mum has been having seizures for a couple of years, her whole body goes stiff and her eyes stare, she doesn't shake. She says she feels like she is falling. Up until reading this article I didn't make the connection. Mums doctors just say they don't know what causes her condition. This has been helpful.

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Thank you for this article, it most helpful. For over 14 mths I have been advising the Dr that my husband's focal seizures are followed by confusion & memory loss. Both the neurologist & Dr have dismissed these concerns. This article gives me something tangible to share with them.

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My husband age 77 has had vascular dementia for 8 years , he has seizures that last several hours , he was hospitalised for ten days and given tests, the hospital refers to them as episodes and tell me these will continue and not to bother calling 999 in future but he is unresponsive during these episodes , one day it lasted for six hours can anyone tell me if this is normal for him

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Hello Suzanne,

Thanks for your comment. These episodes must be concerning. Seizures and dementia is a complex area, so we'd really recommend that you and your husband speak to the GP.

For dementia information, advice and support, you can speak to our dementia advisers through our Dementia Connect support line on 0333 150 3456. They're available seven days a week: https://www.alzheimers.org.uk/dementia-connect-support-line

Some people also find it helps to talk with others who have gone through or are going through similar experiences. If you think this would help, you can visit our online community, Talking Point, for peer support: https://forum.alzheimers.org.uk/ It's free and open day or night.

Hope this helps for now, Suzanne.

Alzheimer's Society blog team

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My mom was in the later stages of Alzheimer’s one night I heard a yelp in her room and I ran in to see what was wrong. She was having a tonic seizure. I called 911 and they talked me through it. I had no idea what to do. The ambulance gave her oxygen and then took her to the ER where she had an X-ray, CAT scan, and urine and blood tests. They told me everything was fine and they were going to send us home with seizure medicine. But the neurologist at another hospital wanted to do an EEG and MRI to find the root and cause of the seizure. So we went. There she had a short EEG test that showed nothing. Twelve hours after her first seizure while waiting for the MRI she had a second tonic seizure which stopped her ability to breath. Then they put her on a ventilator, seizure meds and a 24 hour EEG. After the EEG was removed we waited the remainder of the day for a MRI but it never happened. That night they took her off sedation and she woke up gagging on the ventilator every ten seconds. She looked miserable it was heart breaking. But when she was asleep she was fine. That night they did a test to see if she was strong enough to breath on her own and briefly turned off the ventilator for an hour and a half but she was not able. She spent a day miserable when awake gagging every ten seconds on the ventilator (still off sedation) In the afternoon they tested her lungs again without the vent for twenty minutes and her lungs still were not strong enough to breath on her own. They took her off the vent and she weakly was breathing for three days. The doctor said she wasn’t strong enough to breath on her own outside of the hospital, for us to take her home. Those last three days she was put on morphine so she would feel no pain as she slowly passed away. They also put her on something to stop her mouth secretions (and prevent the rattle-or gurgling),
It was hard to watch. I wish I knew the effects of ventilators on those with neurological issues when deciding on her end of life code and DNR plan. Waiting for the MRI while not on seizure meds may have lead to the second seizure that ended her life. I was reading this blog at the hospital while going through this, I was not sure what caused her seizure, reading this blog really helped. Thank you.

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Evah, we are so sorry to learn about the loss of your mother.

Some people affected by dementia often find it helps to speak with others who may have experienced similar things. Our online community, Talking Point, is free to use and open day or night: https://forum.alzheimers.org.uk/ It's always a great way to find emotional support, if you need it during this difficult time.

We hope this helps for now.

Alzheimer's Society blog team

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It's such a relief to hear that epileptic seizures are not uncommon in dementia patients. My 69-year-old husband had his first seizure this morning and it matched a lot of the symptoms described here. he was in bed, but his face turned bright red, his eyes went fixed and he shook for about 2 minutes. Then, he had very labored breathing for another 20 minutes. Then he went to sleep. I was afraid he was having a stroke and I have been watching him for stroke symptoms all day but he seems to have completely recovered to his usual self. He was diagnosed with frontal lobe dementia about 4 years ago. He doesn't talk, walk without assistance, and is completely incontinent. But, he keeps trying to say things and he laughs and sings. I thought it was the end this morning but I am really grateful to have him back. I almost called emergency services but didn't. I thought why put him through that misery and what could they do for him anyway? It wasn't like they could prevent more brain damage. (Sigh). Thanks for being here and sharing. I feel much better now.

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So sorry you are going through what you are going through . It’s such an unforgiving condition . It was not until
Today that I understood seizures were a common factor with dementia . Someone that I was once close to suffered a seizure this afternoon . He has a dementia diagnosis very late stages now with no plans to treat him medically with the underlying’s . I hope the rest of your time with your husband is kind to you . Good luck .

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Hi what you said resonates so much with me. My dad has had dementia for 6 years and has just recently been diagnosed with it being severe. On Easter we thought he was having a stroke as his gaze was fixed and he couldn’t move talk, respond nothing. This is when we were told of the progression. Now he’s having these seizures and they’re so scary. VA told us there’s nothing else they can do. I don’t believe it! He was walking, talking, I mean he was completely independent with motor skills he was continent he was fine per say he was high functioning with dementia. VA has been so quick to put him on hospice but despite the seizures my dad is coming back around he’s eating like normal he recognizes me, mom, my brother he’s even hopping up saying “I got to piss” and he rushes to the toilet. I’m lost and don’t agree with hospice.

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Hi Nicole,

Thanks for your comment - we're really sorry to hear about this situation with your dad. This sounds really difficult for you both.

You may find it helpful to talk to one of our dementia advisers who can learn more about your situation and give you information, advice and support. To speak with an adviser, please call 0333 150 3456 to contact our Dementia Connect support line. More details about this (including opening hours) are available here: https://www.alzheimers.org.uk/dementia-connect-support-line

Hope this is helpful, Nicole.

Thanks,
Alzheimer’s Society blog team

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Try not to think of Hospice as "giving up". Hospice organizations provide support for patients and families as they navigate illnesses/diagnoses that have prognosis of 6 months or less given the natural progression of the disease. As a hospice nurse, I have many patients who have lived FAR more than 6months and continued to qualify related to documented signs and symptoms of progression of the disease. Many of my patients have plateaued or stabilized and been discharged. Some patients revoke after a period of time. The most important thing, and what I have witnessed time after time, is that a hospice patient's quality of life, family understanding and acceptance are improved with the support of the hospice team.

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My mother has frontel lobe dementia , it’s been 6 years now . She had her third seizure last night, she was unresponsive , she messed herself , myself and my dad managed to get her on a chair and lift her into bed on her side . She slowly came round and has been sleepy all day. We didn’t want to call for an ambulance as she cannot communicate , walk properly and just sings and laughs . We have to help feed mum, we do everything for her. She is 72. These seizures are not nice to see, but be strong. I’m so sad I’m loosing mum day by day, but we won’t give up on her and place her into a care home. She needs us . It’s so sad that she doesn’t know what’s going on. And it’s us that’s suffering too. X

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Wow..I know is Hard because I'm going thru the same thing With my mom,she just turn #65 Last month. Is So scary an Not Easy at all .an Yes Like me I have my mom with me Ever sense I found out she had Alzheimer's an dementia 6 years ago,She was an Independent woman she was living in Puerto Rico an I went to get her an she's being with me ever sense..Is Hard Seen my mom Like this an knowing that I'm losing her little by little..I Thank God for Giving me the Opportunity to Be with my mom an take care of her..She's My Big Baby😇 and My Angel .God Bless us All .Amen..

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My mother who is 89 has had milder spasms which started in 2017. However since December 2020, they are very frequent. She does not get any for a week and then gets them constantly for a week. Last week it was an epiliptic seizure the head went back, the rolling eyes, body stiffness, foaming mouth and then it was over. Now she had none for 5 days and today has started again. Had at least a dozen since morning. Doctor is contacting me next week and i am going to ask if she can prescribe something.

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I have a friend who started having focal epilepsy about 18 months ago, he is 69 years old. His mother had dementia but not aware of her having any seizure. He has been told that his white matter is more than normal after a brain scan. It’s very scary for him because when these episodes happen he just stares and when they subside he doesn’t know where he is or what’s happened. It’s like he loses the prior hour plus the time of the seizure. At this time he is still working, driving and taking medication for the seizures, but he has begun to think he should quit his job and stay home. He has no other health issues and takes no other meds. Is the the onset of dementia or Alzheimer’s ?

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Hi Jean,

Thanks for getting in touch, and sorry to hear that this has been a scary time for you and your friend.

Seizures and dementia is a complex area, so it's difficult to comment without knowing more about your friend's situation. We'd really recommend that your friend speaks to their GP about the concerns, who may then refer them onwards to memory services if it's appropriate.

As mentioned before, the links between epilepsy and dementia are complex and not well understood, but it is possible to experience memory loss purely as a result of an epileptic episode, not because of any underlying neurodegenerative disease:

The charity Epilepsy action has more information on this: https://www.epilepsy.org.uk/info/memory

Although some loss of memory is to be expected as we get older, if your friend has concerns related to their epilepsy or memory then their GP should be able to provide the right support.

If you'd like to discuss this more, you can also call our Dementia Connect support line on 0333 150 3456. A dementia adviser will be able to give you more information, advice and support: https://www.alzheimers.org.uk/dementia-connect-support-line

Hope this helps, Jean.

Alzheimer's Society blog team

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