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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Ann
saysThis research is so important. As my dad recovered from seizures by the time anyone saw him I believe he suffered from them for months before being admitted for a month as he was suffering from delirium. 6 months later they started again and this time in front of medical people. He is now on epilepsy drugs but his neurologist is keen to see one to work out what is happening as per your article. Early signs of dementia are now there and with the seizures under control we can take the next steps. We have no idea what’s going on and hopefully people like this will research and be successful in their findings.
Greg
saysMy dad is 84 and has dementia, i live with him so its just the two of us. He had his first seizure last week, i was unprepared for it totally, it was quite violent and loud. Luckily i had an ambulance arrive about 10 seconds into his fit and i just like thank the brilliant NHS paramedics and firefighters who attended. The hospital is starting my dad on epilepsy meds so hopefully this should help if dad gets on with them. Take care everyone and keep your chin up :)
Milena
saysMy mom is with very advanced dementia and been having seizures more frequently. The first time my brother and I witnessed it was horrifying. Please watch for involuntary movements, if they start showing up more often, it means a seizure is on the way. Inform doctor's about involuntary twitches so they can increase anti-seizure medication.
Look after yourselves
Brian Hooper
saysAll these experiences help me understand what is happening to my wife but - frightening too.Brian
William
saysBrian- My wife just had her first seizure last week caused by Alzheimer's. I am sorry you are going through this frightening experience as well. Best of luck to you and your wife.
Melanie Rimmer
saysMy mum went in hospital yesterday after been unresponsive for 20hrs .Doctor rang and said she’s had 2 seizures but ct scan has come back normal.
Mum was diagnosed with mixed dementia 4yrs ago.
Paula Johnson
saysMy Mother has vascular Dementia for over 10 years she is 86
suffered a stroke and seizure two weeks ago. Today has suffered another seizure it seems once brain cells start to die the brain shrinks which causes the seizures.
Lyn
saysMy Mother passed away recently from Alzheimer’s at young age of 70 she had two very bad (known) seizures before she passed in a care home. We were never told by doctors that seizures were a part of it.
I welcome all the comments (so helpful) and research that can be done as the care givers and family/friends are the ones living with this terrible & unpredictable disease. My mother also had a sugar addiction, everyone though they were doing the right thing by giving her treats- comforting for her in the late stages of her illness. I think my mother was having seizures for years (as she used to stiffen up) and we didn’t know or were told what they were. When she was out of sorts and irritated or very sleepy- The doctors and nurses kept saying she had UTI/ kidney infections and would put her on antibiotics. We though the stiffness, tight lips and jerks were part of her Parkinsons. My mother was diagnosed with Parkinson’s disease at the age of 49 & we were told she had dementia in her 50ies. She was non verbal for years so couldn’t tell us what was happening to her, so we had to read her facial and body movements. She was on 18 different tablets a day with crazy side effects. The doctors never explained why she was on different medications, we had to do the research ourselves. She often refused to take them, she knew herself they didn’t agree with her (she complained of a reeling in her head when she was verbal) and they were forced on her (doctors advice to crush them into her food in the hospital) and they wouldn’t reduce the meds until she was dying and couldn’t take them anymore anyway.
I understand Doctors are over stretched and over worked and don’t have time to explain medications to patients and care givers or take time to read new research.
There needs to be more research and nutritional education for Doctors who refuse to look at vitamin D and B12 deficiencies or low levels in bloods, the battle continues with my fathers getting a similar diagnoses.
Why not? Is the million dollar Pharmaceuticals companies putting a stop to the simple vitamin? Why are doctors afraid/unwilling to give vitamin B12 injections? Etc. Who knows...
Thank you to everyone who took the time to comment here, the caregivers and concerned family members- thank you hug your loved ones- wear plastic aprons, gloves and masks if you need to during this pandemic as they are missing human touch :(
everyone over the age of 60 should read these comments as old age and dementia are ahead of us all.
Big Covid free loving hugs to you all. Thanks to the Alzheimers Society for this blog xxx
Jane
saysMy mom was 87 and had Dementia. She passed sway on Thursday. We had just shared a o and b sandwich. I went ti my room to make a call saw the light go on in the bathroom heard her in there got uo to see what she was doing and she had some type of seizure and was gone that fast. Im so confused on what happen and so sad she didnt engage but knew who we were and never ever complained. Akways her sweet self
N Paget
saysThis attitude to these “vacant periods” or non responsive periods upsets me greatly. The second you call these common symptoms seizures you give GPs the opportunity to support the pharmaceutical industry and give those with less knowledge the idea that there is now epilepsy. I am shocked that Alzheimer’s society support this piece of research trying to generalise and pidgeon-hole people with Alzheimer’s diagnosis. These are NOT epileptic seizures, they are specific to dementia and before drug intervention you should ask IF and HOW it benefits the individual. They are not lab rats! My father was far less distressed by these episodes than by side effects of inappropriate drugs and the attempts to do MRIs to prove a diagnosis of epilepsy which WAS NOT evidenced.
Hi there, thank you for getting in touch and for sharing your concerns.
You’re absolutely right there may be lots of different reasons why people with dementia have vacant episodes, only some of which will be epileptic seizures. We have a lot to learn about seizures and dementia and that is why Dr Baker’s work is so important. The core of his work is to understand how common it is for people with dementia to have seizures and how we can best identify and treat them.
A key point will be to understand if seizures cause a more rapid decline in symptoms and if so, might treating seizures by helpful? At this stage we don’t know and medication needs to be considered with caution as you say, as some antiepileptic medications can cause side effects. We need to see more research like this work by Dr Baker, to understand whether treating seizures really is beneficial. This sort of work is essential to be able to improve the lives of people with dementia and their families.
We hopes this helps to answer your concerns,
Alzheimer's Society research team
Graday Borrett
saysMy lovely daughter who has just turned 60 has suffered all that the above have and more for 5 years. She is very happy in a very good Rest Home. She does recognise people occasionally, she eats well and now allows the girls to bathe her and dress her which we had problems with at one time. It is such an awful disease which I hope there will be a cure for one of these days. It seems so unfair this can happen to anyone. I miss my daughter so much!!
Andrew Price
saysShe obviously has a loving parent in you to care for her, and I'm sure those times when she does recognise you are so precious to both
Cosimo Sgambelluri
saysMy mom had seizures we did not know this was due to dimensia or if they were serious! She then had a stroke could not eat & winded up with a feeding tube since not eating! Then passed away in two months!
Anne
saysVery sorry for your loss.
Cosimo
saysThank u it’s a bad disease at the end for sure!
Devendra
saysThank you al for sharing yr. experience with Alzheimer’s Dementia persons. It was very helpful as my wife 75 is having Alzheimer’s Dementia and also Seizures.
Lucia Kleiman
saysI was my mother's caregiver for three years but now she is at a Nursing home after having some other medical issues. She has dementia, Alzheimer's and is unable to eat on her own and doesn't recognize me (her daughter) nor anyone else in this life. I am grateful that she has always been a happy person. Her decline with this awful disease started about 12 years ago. One exceptional incident is that she enjoyed having a doll.. It makes her happy talking to the doll and loving her. The facility ended up getting a couple of dolls and for those who embraced the idea of having a doll to hold on was fabulous. My mother started this without knowing what she did. The doll has been a wonderful tool to keep her-in a state of happiness. Unfortunately, last year she had two seizures in 2019 and now one seizure yesterday, April 8,2020. After having her blood test at my request, she was low on Vitamin D (below the 30-100 range) Her number was 18. This is a cause of POSSIBLE hypocalaemic Seizure. Being dehydrated is another factor since my mom doesn't drink enough liquids. A deficiency of B6 can cause or worsen seizures. Since I've read that having Dementia/Alzheimer can lead to having seizures it causes some concern when your loved one cannot communicate with you . They cannot express how they feel and symptoms that they may experience. The Dr. wants her to go on Keppra. The side effects which are common with this drug : infection, drowsiness, headache, aggressive behavior, agitation, anxiety, depression, fatigue, hostility, hyperkinetic muscle activity, personality disorder to name a few. This is not a complete list of possible side effects. What concerns me is how easily some Doctors want to put you on a drug without realizing that the side effects are worse than the actual seizure. Obviously, I am not talking about severe seizures.... Length wise. It is a terrible disease (Dementia/Alzheimer ) and we all have to make decisions along with the Doctors as to what is best for our loved ones. Keppra is not in my moms future. Research, ask, listen and be guided by your own spiritual journey as what is best for your loved one. I pray that one day we can find a cure for this devastating disease. Bless you ALL during this Corona-virus epidemic and stay healthy and stay home.
Michael Wilkes
saysI would like to say thanks to Lucia for her most helpful letter, My wife was diagnosed with Alzheimer’s 7 years ago & has spent over 3 years in a nursing home, She too loves to have a doll or teddy bear to cuddle. Unfortunately she was diagnosed positive with Corona Virus this week but shows no physical symptoms. She herself suffered a suspected seizure yesterday. Thanks again.
James
saysHI Lucia, thank you for this insight and I can fully empathize with you as my mother is more or less in the same situation. A few days ago she had her first seizure and Dr. gave her Depakene medication. The side effects of this medicine are bad. She is in the nursing home and they insist that they have to put her on this medication due to legal and medical compliance and responsibility reasons. I don't know what to do. Would it be possible if we could exchange some ideas ? Can we talk on zoom ?
Hello Gihan
Thanks for getting in touch. We're very sorry to hear about the situation with your mother's health.
You may find it helpful to talk with other people affected by dementia within our online community, Talking Point: https://forum.alzheimers.org.uk/ There are lots of discussions already happening between carers and also people living with dementia.
Alternatively, you can always talk to one of our dementia advisers through the Dementia Connect support line on 0333 150 3456. They're available seven days a week - take a look at opening times here: https://www.alzheimers.org.uk/get-support/dementia-connect-support-line
We hope this helps, James.
Shobhana
saysThis is helpful. My mum had dementia and has started getting seizures now. We're in Fiji so hard to get the best treatment for her.
Vicky Richardson
saysThank you for taking the time to share so much important information for all of us just beginning this journey.
Paula D. Diedrich
saysLucia, I hope your Mother is still with you as this is two years later. My husband started having memory problems in 2013. He was able to keep his job until the beginning of 2016. Since he has gradually declined. He has had 2 seizures. He no longer knows me. He can eat finger food & is still able to drink fluids out of a straw. This disease has already ripped me apart. He just turned 64. So very young to be dealing with this.
spencer pearson
saysNICE BLOG
Emily
says36y.o. female with absence seizures for the past 11 years, which have become much more frequent in the past 3 years; going from one every 2 months to 2/week. Memory issues also more frequent in the past 3 years. Currently taking levetiracetam 1250mg bid with no improvement. After going through blood work about 2 years ago, MD mentionned B12 was low as well as vit.D. Started taking po supplements, however not regularly. MRIs showed "white substance" with no change in the last year. Sleep deprived EEGs came out abnormal, 2 years in a row. Had multiple episodes of hypoglycemia for at least 5 years, without any diabetes. Appear to have reduced in frequency in the past year. Working and mama of 3 young kids, makes it really difficult. Colleagues have noticed more than once when having absence seizures.
Alison Joan Brighouse
saysHi, just read your story and was interested to read you have episodes of hypoglycaemia without diabetes. I had the same and my GP commented that it’s extremely rare to have sugar lows unless you’re diabetic. Turns out I had insulinoma which is an extremely rare condition.
Sarvat Ara
saysHello
My husband is 65 years and was diagnosed with dementia 3 years ago. He used to get panic attacks for seconds where he would feel restful and will be short of breath. The family doctor and the geriatrist were not able to find the cause for it and just prescribed anxiety medication. I travelled to india for a vacation one month back and one night he had an epileptic seizure. I rushed him to hospital and was put on medicines advising us that the seizures are due to low sodium. He responded well to the medications and was released after 3 days. He was ok for 2 days at home and on 3rd day hiccups started which would not stop. I again rushed him to hospital and he was kept under observation. He was given mild sedatives to keep him calm. They performed EEG and MRI and no seizure activity was recorded/found. In the afternoon when I visited him he started twitching again and I called the doctor to show them and she immediately asked to give him anti seizure medicine. Now they want to perform CSF test to rule out infection. Are multiple seizures part of dementia and are they dangerous?
Christine
saysMy sister was having short term mmory problems, and she was 64 when we noticed the diffrence in her. She started to repeat herself often, and my sister, and I knew right away there was a problem. She has been like this for 7yrs now, and she has had a seizure, and was rushed to the hospital, and she was throthing at the mouth, and didn't know who her kids were. She was sent home with meds, but her husband is not well , and he has had two heart attacks. My sistsr, and I try to make sure she takes her meds, but she will refuse to take it at times. She is a retired registered nurse, and was well read, well educated, and it is so hard to see her the way she is now, as opposed to the way she use to be. Very sad. Also, what is considered young onset of Alzheimers. She was diagnosed with dementia, but that is a symptom of Alzheimers.
Ellen
saysMy Mum is 86 years old and has Vascular Dementia which presents itself as zero memory. She communicates and socializes well but cannot remember anything as soon as she is out of that moment. For example, we took her out of the care home on Saturday to visit her sister and had a lovely few hours reminiscing. On return to the care home, my daughter and I took some shopping to her room and on return to the lounge we went to say goodbye to her and she thought we had only just arrived! Anyway... on Sunday evening she had a seizure and when we arrived she was being seen by paramedics and was quite unresponsive and drowsy. She had a second fit on arrival at the hospital and was taken to resus where she had a CT scan and bloods taken. Her vital signs were all good and there was no indication of a stroke or bleed on the brain. Could these seizures be part of the dementia and are they likely to be a regular occurrence?