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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Paul F Doherty
saysMy wife has early onset semantic dementia from age 61. This was preceded by lip smacking during the year before diagnosis. An appointment with a neurologist identified possible epilepsy which was identified by an EEG test. Tegratol was prescribed 4 years ago which has managed the external symptoms of the epilepsy. Her dementia has progressed and my wife can no longer understand what is being said to her most of the time, which makes it very hard to tell how she is feeling.
Priscilla rodgers
saysThank you for this site. my 71 year old friend has been having seizures for years and been treated for seizures only. I have noticed a marked decline in her mental state the past year. I know her mother died of alzheimers. Her behavior was truly bizarre the past few days. She is adament that she doesnt have dementia and is pushing all her friends and love ones away. She just sold her house and decided to move and yet has nowhere lined up to live , except her rental car, which she can barely find in a parking lot. She is in the usa. Just wanted to vent. She makes me feel like the crazy one! My sympathies to anyone living this craziness daily.
Suej
saysMy mother who has been diagnose with Alzheimer's in 2013 and is now in a nursing home has recently started to pass out when she has eaten her meals. She seems to respond reasonably well to raising her legs to get good blood flow and the episodes have only resulted in an a & e visit on 2 occasions in the last 8 months with other events being handled in the home locally. She has been fitted with a heart monitor but nothing is showing as a rhythm problem as yet. However she has also been put onto 500 mg of leveteracetam taken in the morning and evening to reduce the seizures. The seizures continue but I have noticed that mum's confusion although still significant does seem to be lessened since taking the drug. She seems much more 'aware' of people around her able to give more non verbal messages about mood and is much happier than before. I asked mum's doctors in the gp practice and hospital if this info could be fed back anywhere as I understood that the NHS was looking as 'repurposing' drugs which had already gone through NICE recommendations for other conditions not recognised before. Nothing was mentioned about this research so valuable info is being lost. I also noticed that water and anti inflammatory drugs mum has been given in the past has also had a similar positive effect on clarity. When mum has what I now consider to be the seizures described when she comes too she it much clearer and brighter but tired than before her seizure. There are also common signs prior to a seizure of less responsiveness and tiredness. You can circumvent the occurrence in mums case by raising her legs or getting better blood flow to the brain and she seems to 'pop' back into consciousness. I hope this info is helpful for the research and we would be happy for any info to be passed on of her ongoing condition if that would be helpful.
michael
saysI've had seizures for about 5 years, two periods in ITU and now have severe damage to both hippocampi and memory loss. I am now diagnosed epileptic. Before I was diagnosed as hypoglycaemic. My mother died of Vascular Dementia. Is there a scan that differentiates between epilepsy and early onset dementia?
Jay fallon
saysMy nan has vascular dementia which came really quick after a heart attack, 2strokes and a bleed on the brain within 4months she's in a nursing home now but every few weeks develops muscle twitching and weakness, this seems to have be going on for a while now but then 2weeks ago she had 2pretty big, long unresponsive seizures one after the other. Drs said they believe it to be a further stroke but wasnt going to scan her as it would cause distress and nothing would Change as she isnt a candidate for intervention or further treatment. Tuesday night she had another seizure lasting 20mins and was rushed back off to resus only to be sent back again to the home next day. I have been saying to the care home for months everytime the twitching starts its like her body is having a seizure but she's awake and responsive. This has got more and more frequent and her memory has got worse. Its actually 2years today that she had the heart attack and the nightmare began :(
Victoria Wallace
saysAt the age of 18 i was diagnosed with temporal lobe epilepsy. I take 400mg of phenytoin everyday but i still have absence seizures. I had an mri scan and i've got cysts on the pituitary gland though this isn't connected to epilepsy. I often wake up not knowing what day of the week it is and i have trouble with remembering names and who individuals are..Does it sound like there a link between what i've got and Alzheimer's ?
Hi Victoria,
Thanks for getting in touch and sorry to hear about these recent problems with memory. It's difficult to offer a simple answer here, so we'd recommend speaking to the physician managing your condition if you haven't already. We can however offer some limited information that you may find useful:
- People with long-term temporal lobe epilepsy (TLE) can have a higher chance of developing a wide range of health problems, including mood disorders and memory problems. In general, the longer the person has had TLE, the greater the chances of having mood and memory problems. This includes having a greater risk of eventually developing Alzheimer’s disease – one study estimated about a four times greater risk than people without epilepsy.
- However, this does NOT mean that if someone with TLE is experiencing memory problems, it must be a form of Alzheimer’s disease. TLE can cause long-term damage to the sensitive region of the brain that processes memories (known as the ‘hippocampus’) and this damage may or may not be similar to the type that occurs in Alzheimer’s disease, where various types of faulty proteins accumulate in and around the nerve cells.
- As far as I’m aware, having a pituitary cyst should not cause memory-related issues – at least directly anyway.
- If you're worried that about your memory, it’s very important to see the physician managing your condition who can then carry out a full examination. They may then refer you to a memory specialist who can explore this in more detail.
Hope this is helpful,
Alzheimer's Society knowledge team
Christopher J Edgerton
saysGood to know
Wondered why my mother in late dementia developed seizures
Like the gentleman said earlier Good that my mother had first registered seseizures n hospital
But OH boy Was called in to hospital for end of life issue ... mother diagnosed and lived well with advanced Alzheimers type "confirmed by brain autosy"
But still wonder if drugs coused seasures
Peter Easom
saysInteresting read. My wife had FTD , she suffered with seizures and was tested for epilepsy, which came back negative. She was 71 when she died of dementia, at no time were we told that the seizures or the trembling was caused by her dementia they just said that it was myoclonic jerks, they prescribed her phenytoin twice a day, but after a time this became ineffective. I just wondered how much is known by doctors about this research because at no time were we told that the cause was her dementia. It seemed every time she had a bad seizure she also had a water infection and this was put down as the cause. I think it would have helped us understand more if we knew that the dementia was causing this.
Suej
saysHi Peter. When my mother who has Alzheimer's and s now in a nursing home first started having seizures I thought it was urine infection too as you notice the distance/confusion first. Previously we would give the appropriate medication and she would be back to her normal self, whatever normal is with this disease. She is now passing out regularly coincidentally more often after eating ratger than just the confusion. They have fitted a heart monitor to check for any arithmia problems. Nothing has been detected. Although seizures have been mentioned nobody has advised me that this can be a common occurrence in patients with alzheimers in the 8 months since mum has had them. I wonder how the data is recovered which feeds into this research from my mum's events and others who's commented as nobody I have spoken to has said this research is ongoing as we would be happy to participate to help others?
Jill Sanderson
saysThis is interesting research. My mum is 78 years of age. Nearly 3 years ago she had her first seizure, prior to this she had begun to show signs of memory loss but was living independently and had not been diagnosed with Alzheimers. She did, however suffer with depression. We were initially told by the hospital that she had had a stroke but then later told this was not the case. Her post seizure confusion was horrendous but she recovered quite well and returned home with medication, she more or less went back to how she was but we noticed her memory had declined and she had was diagnosed with early Alzheimers. A few months later we discovered she was not taking her medication. This was the beginning of our battle to get some assistance from social services but were unsuccessful. The inevitable happened and she had another bout of severe seizures, this time resulting in her being sectioned and detained for assessment. After 28 days she was sent home as medically fit but this time with carers 3 times a day. There was still no mention of the connection by the medical profession to Alzheimers. Her time at home lasted 4 days and was the most horrific experience, she was delirious, confused and a danger to herself. We insisted on 24 hour care where she has been quite stable for 2 years but recently had further seizures despite having her medication administered. She has been in hospital 2 weeks now and is completely incoherent and currently bed ridden in a semi conscious state. Each time she has suffered a seizure her condition has been worse.
Marian Dashfield
saysWith reference to Karen Smiths comments my Dad has been having B12 injections and has had for quite a few years. At 92 he is now in care home for people living with Dementia. My Mum (88) is heartbroken as are all the family. She had promised him she would always care for him but could no longer do it.
Mrs s groves
saysYo the lady who commented on looking after a loved one with dementia I totally agree everyone looking after a dementia patient deserves a medal my mum had dementia she died on the 27th September just last week I took her to hospital to get her checked out and left her half an hour with her and she died I hate dementia and I wish the government would do more to help all us carers I wish people who haven't to deal with it understood it more just to help our loved ones get through unless you have lived through it you cannot understand how it feels take care all you cetera x
Raj
saysPrayers for all the amazing Alzheimers Care givers. My mum was only 65 when she was diagnosed. She was having big sudden movements sporadically and no one from physio, GP, nurses, OT etc. Had any advice or suggestion. It was only when she had an unresponsive body movement episode necessitating paramedics did we learn that the movements were seizures. It amazes me how little interest and information the GP has about Alzheimers and the signs and symptoms of seriously worrying and painful episodes of seizures!! Mum was finally referred to a Neurologist and we chased the Tel appointment relentlessly. GP had already put her on epilim. All neurologist could say is that she will have more seizures due to brain changes and that the epilim is to help avoid episodes but they’ve increased in frequency instead. In desperation Called admiral nurse at Alzheimers society and her advice was to get palliative nurse support. Even during covid palliative team will come out and assess. Lots of helpful advice from palliative nurse. Mum to go on pain relief patches and she can have injections to help stop the pain effects from a seizure.
Johanna Cawood
saysMy heart goes out to all these carers. What a lot of Angel's you are. Having a mom with Dementia I know how hard it is to watch the degenerative process of your loved one. To the researchers I want to say you are amazing. Keep up the good work and God Bless you.
Mrs Linda Hooper
saysMy husband has Alzheimer’s dementia, was diagnosed 9months ago,but thinking about it I now think it’s been coming for a while, but nighttime’s when sleeping he jolts and mutters sometimes shouts, and his arms are hardly ever still, it’s like he gets no peace ,and me either, when I tell him or ask him he doesn’t know what I mean, I am new to this as Iv never been around anyone with dementia before.
Hello Mrs Hooper, thank you for getting in touch.
Unfortunately we cannot comment on individual cases, so we recommend speaking with the doctor as they will be in the best position to help.
Sleep disturbances are sometimes a known feature of the early stages of dementia - here's some more information: https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/sle…
For information about dementia, our National Dementia Helpline is open seven days a week on 0300 222 11 22 - https://www.alzheimers.org.uk/get-support/national-dementia-helpline
We hope this helps.
-
Alzheimer's Society blog team
Christine
saysHi Linda, I found it very interesting to read about your husband & his sleep pattern. My husband has EOA & his sleep is very disturbed too, with jerking arm & leg movements. Often waking up shouting & saying most bazaar comments. It’s very upsetting.
Thank you for sharing.
Peter Taylor
saysMy wife has just reached her 71st birthday and has been suffering with Alzheimer’s for 11 years from slow beginnings to the stage now where she is unable to talk and following a fall has not walked for 2 and a half years.
Her ‘fitting’ started with momentary Absences or Myoclonic Fits. However for a couple of years she has been having proper fits , particularly at night.
These usually start with a shout and jerk as it she appears to have been stabbed in the back. Her hands will be ‘buzzing’ and shaking , interspersed with the Jolting jerk .
Most often this develops into a cringing ,face contorted , Blue lipped fit , where every part of her body is squeezed up tightly and she doesn’t breath.
This passes after a few minutes and she starts to relax , but is very tired.
Her hands continue to ‘buzz’ as I lay beside her to comfort her usually for about half an hour before she is completely calm and sleeping.
We are using Keppra to combat the seizures, but it is not completely successful and I give her liquid Diazepam to help routinely.
Lauri Brown
saysOn May 2, my mom had the exact type of seizure that Peter describes here. I have been caring for her at home since her diagnosis in summer 2016. She doesn't take any meds and to my knowledge had not had a seizure before this; however, now that I am reading up on seizures, I realize that she may have had less dramatic seizures all along that I simply didn't recognize as seizures. Since her face was drooping after the seizure passed, I thought that she may have suffered a stroke and called the paramedics. The ER doctor said that her CT scan did not show evidence of a stroke, but unfortunately, the doctor did not want to hear my description of the fit or offer any insight as to what may have caused it. Since I am still waiting to hear from mom's primary care physician, I have been researching the matter online so that I know what to do if it happens again. Thank you for this article and this comment.
Sylvia Hall
saysA remarkable and interesting piece of research. My only reservation may be in the older dementia sufferer, given that the break down of multiple prescribed drug taking is slower in all of us who do not have this debilitating and scary condition it may not be helpful.
However for the younger sufferers it may prove beneficial I would like to hear of any further outcomes.
John Amos
saysI am interested in this research as my wife was diagnosed with Alzheimers in 2010 and previously had never had seizures or epilepsy. However a year a two later she started having seizures whilst at home and actually whilst waiting in the A&E (good place to have one if you have them at all) in 2014 because the Alzheimers had progressed went into a nursing home but she continued having seizures maybe one per month. After a while the GP who visits the used different drugs and she is now on sodium valproate and levetiracetam which seems to have kept the seizures at bay. She has not had a noticeable seizure for about 2 years now, of course it is not known if they may return. I am interested in the focal onset seizures as this has never been mentioned but I do see her stare and "not be with it all", However she is immobile and doesnt speak so her actual condition is difficult to assess. I realise that you are unable to give any advice as such but thought that you might be interested in our situation.