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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Alzheimer’s Society is working tirelessly to challenge perceptions, fund research and improve care and support. We rely on your donations. Let’s take on dementia together.

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My husband had his first seizure in April of 2020. He was diagnosed in 2017 with Vascular Dementia. It was scary. Was put on seizure medication. He has only had the one so far

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My mother is 90 years old and has been living with my husband and I for the last 8 months. She was diagnosed with vascular dementia in 2018. She has been having a seizure which lasts about a minute in the early morning about once a month during her stay. We did observe others prior to her living with us so I think they had been happening for some time un be knowns to us. The day after her seizure she would be much more alert and more like her old normal self. We tried antidepressants for 3 months, as her mood was quite low and during this treatment she went into delirium after her last two seizures. It was like whatever chemicals were released in the brain post seizure where heightened too much with the addition of the antidepressant. As she was unable to increase to a therapeutic dose due to side effects we decided to cease it. Five days post ceasing the antidepressant, she had her seizure and didn’t go into delirium. Hopefully now we won’t need seizure prevention medication now if she no longer goes into delirium post seizure. Mum had investigators ie blood & urine tests during the delirium to rule out infections as the cause.
I’m very pleased research is being done into seizures and dementia.

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Interesting conclusion, but Epileptic Seizures is potentially improperly referenced. Hypo-glycemia in DM1 patients like myself also causes seizures. Blood sugar levels between 10-30 mm/dl will promote a tonic-clonic reaction in myself which is the same as an Epileptic episode. I've not been properly diagnosed by a neurologist as Epileptic. I'm continually told my seizures are from undiagnosed epilepsy. It seems that the only conclusion from neuro-types is seizures mean epilepsy.
Research topics are important, but starting with dementia, then working back, misses an entire potentiality: tonic-clonic seizures cause dementia. Not the other way around. Severe hypoglycemia is one example of a cause of T-C seizures, Epilepsy another, tumors another.
Now, a cause of dementia could be from chronic tonic-clonic seizures. DM1s with high seizure rates of 2-3 a year, over 35 years is a more inciteful, original and understudied among the medical community. Tonic-clonics cause brain damage, and over time, cause dementia. I am a living example and would take part in any studies you are aware of.
Kind Regards,
Ryan Trost
DM-1 1983
52y

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This 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.

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My 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 :)

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My 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

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All these experiences help me understand what is happening to my wife but - frightening too.Brian

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Brian- 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.

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My 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.

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My 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.

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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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My 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

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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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She 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

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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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Very sorry for your loss.

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Thank u it’s a bad disease at the end for sure!

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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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Thank you for taking the time to share so much important information for all of us just beginning this journey.

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NICE BLOG

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