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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My 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

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This 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.

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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

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My 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!!

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My 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!

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Thank 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.

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I 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.

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I 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.

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HI 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 ?

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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.

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This 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.

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NICE BLOG

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36y.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.

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Hello
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?

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My 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.

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My 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?

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My 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.

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Thank 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.

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My 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.

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I'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?

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My 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 :(

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