Something unexpected can always occur. It’s been said, “stuff happens.”
But some things should not be allowed to happen. A little foresight and due diligence may save you a great deal of worry, and might even save you from harm.
What is covered in this article:
- Pay Attention to Behaviours That Could Precede a Potentially Risky Incident.
- Rid Your Home of Any and All Potential Weapons.
- Make a Safe Space to Weather Any Storm.
- Be Ready to Call 911 or Other Help.
- 911 Calling: Clarify That It Is Dementia-caused, not Criminal Behaviour.
- Rare, But Not Impossible: Be Prepared.
- With Psychotic Behaviours, Placement May Be Needed.
People with dementia, by definition, do not have normal cognition. This means they can do things that are unexpected. Out of character. Those with Lewy Body Dementia can have extreme swings in their cognitive abilities, and so those unexpected episodes may happen as an even greater surprise. Add to that the potential for delusions, false beliefs, paranoia and psychotic episodes which are all possible and you see the great risk for extreme behaviour. Sometimes, the behaviours of a loved one with more advanced dementia with Lewy Bodies will bear no resemblance to the person you knew before.
Because of these same fluctuations, a person with Lewy Body Dementia can also be surprisingly agile and physical at times. Sometimes, when you least expect it.
Pay Attention to Behaviours That Could Precede a Potentially Risky Incident
Have a plan for the unexpected. If someone seems to be approaching a challenging phase, you will sometimes — but not always — have some inkling that things are not right: there may be indicators as you approach that episode. Outbursts, unusual confusion, agitation, anger, and frustration may lead you to think something is not quite right. If you spend a lot of time with your loved one, you know the norms: if it feels off, it likely is off. Listen to your intuition.
No warning is a possibility as well: so be prepared.
Who doesn’t minimize potential, everyday risks? You would always remove tripping hazards, and reduce the potential for burns on a stove. Perhaps it is prudent to consider two rather drastic changes? Give some thought to these: firstly, removing all potential weapons and, secondly, a secure space for you at home.
Rid Your Home of Any and All Potential Weapons.
Weapons don’t necessarily need to be just guns or knives. Those are hopefully long gone at the first signs of any dementia. In addition, remove or limit access to other things like sharp implements, kitchen knives, scissors, shears, chisels, etc. If a psychotic episode were to occur, and your loved one believed you were a burglar, there’s no telling how it could end: they might believe they were protecting you. Lessen the chances for harm — critically assess and adapt your surroundings.
It might be worthwhile to have an acquaintance come in to look around to see if they notice any items that could potentially be a weapon. Once you’ve lived somewhere a long time, you stop “seeing” some things that might be right in front of you (like antique swords over the fireplace).
Make a Safe Space to Weather Any Storm.
A safe space for you can mean any number of things: everything from a full-blown “panic room” with secured entrance, windows, etc., to a simple route plan to get outside, or to lock yourself in a car. Having a plan beforehand is prudent. For example, you might want to keep a door jam, or a board that you could wedge on an angle against a door handle to keep someone out of the room you’re in, and always have a phone in there. Perhaps you would want a method to alert you if your door is opening while you’re asleep: there are inexpensive remotely ringing door alarms that are activated when a door opens. Motion sensors that go at the foot of a bed can also alert you that your loved one is up and about.
Be Ready to Call 911, or Other Help.
Finally, always keep a cell phone or cordless phone with you if at all possible, in case you need to make a quick emergency call — and know who to call, and the number. In stressful conditions, trying to remember a number quickly may prove insurmountable. Prudent, simple preparation is better than regret.
911 Calling: Clarify Dementia, not Criminal Behaviour.
If you think you may need to call emergency services in future for potential violence or extreme behaviour, you may be able to give them advance notice of dementia being an issue. You need them to know that they should treat the person as having dementia-related rather than criminal behaviour, even if they are potentially violent.
Have a plan for what you’ll say to the first responders. I suggest you say your loved one has dementia or a brain injury. Doing so may lead to more appropriate treatment, and help get them transported to a hospital or psychiatric institution instead of a police station or jail. If true, make sure you say that you do not want to press charges, and that they have mental illness, not criminal behaviour. Otherwise, lengthy court processes can ensue, completely out of your control.
Call your local non-emergency number to inquire if your area has a database that can attach a “flag” to your address or phone number, and that would show that dementia is an issue there. See if a service called Smart 911 is available in your area, which does this specifically. Currently, it is only available in the US — but it, or a similar service, will hopefully be rolled out elsewhere in time.
Rare, But Not Impossible: Be Prepared.
I believe something that requires this level of preparation would only occur to a tiny fraction of people with Lewy Body Dementia, but it is certainly worth considering. And certainly I know of more than one person who has been very frightened by their loved ones during a particularly difficult episode, and with the preparations above, their anxiety level would’ve at least been diminished, and the risk level lowered as well.
With Psychotic Behaviours, Placement May Be Needed.
If threatening or frightening behaviours have begun, this might be the time you will have to reconsider whether you can keep your loved one at home. It would not show weakness or faithlessness on your part. Placing someone in a facility that is properly prepared for difficult behaviours is better for your loved one — and for you — which will help you to provide better care for a longer time.
Again, threatening behaviours in a person with Lewy Body Dementia that would require such drastic measures are not something that I would consider “likely.” Nevertheless, personal safety is critical — much like having seat belts or snow tires on your car, or a smoke detector or a fire plan at home.
Other Hazards From Everyday Life.
Some dangers may not be from weapons. They may be innocuous items, but if a person is not thinking clearly, unexpected hazards might arise that could be prevented. For example, a confused or erratic person might mistake what is appropriate to put in an oven, toaster or microwave, or on the stove. Even easier to imagine, is just leaving something on for far too long. If you think there might be a potential for fire, make precautions in these and any other areas that are appropriate.
A little foresight goes a long way towards increased safety.
Updated March 25, 2017.
New section added above, March 8, 2016: 911 Calling: Clarify Dementia, not Criminal Behaviour.
You can listen to the story above by clicking the red “play button” below.
33 thoughts on “Stay Safe! Lewy Body Dementia Psychotic Episode Dangers.”
A friend of mine suffered a broken wrist when her LBD suddenly struck out and she fell to the ground. So it can happen. But I do not hear of many episodes like this. Do you think this is a common occurrence for carers to experience? I think the threat might be there in a bad episode but the actual attack seldom occurs. Do we know the incidence rate of these kinds of attacks?
I have never seen any hard data on frequency of violence or injury related to Lewy Body Dementia. I think it would be very difficult to get because much of it would be self-reported, and I’m sure many people wouldn’t give full disclosure on what happened in every case, much as forms of domestic violence is still likely highly under-reported. Psychotic episodes and aggression are absolutely NOT a given with Lewy Body Dementia — but they definitely can, and do, happen: so I recommend prudence, planning and preparation. Strength!
It happens. Being prepared means alerting EMT – my LO was arrested instead of taken to ER. All kinds of problems began then.
Although my LBD has psychotic episodes I have never suffered an injury so I think it a rare occurrence. However, the mental strain is real and leads to exhaustion, or as I call it ‘weary’. This is exacerbated by loss of sleep.
I think that violent behaviours in LBD are not as common as may be believed, but because it is so horrifying to those affected by it, we will hear more about it, which makes it seem more prevalent. No matter what, constant vigilance is warranted. Strength!
My wife has been demonstrating signs of LBD for 4 years now. Only on a recent 911 hospital visit did a doctor finally realize something was very wrong when she couldn’t walk. (Not the first time we’ve presented with this issue). She was admitted to the stroke ward and exhaustive tests, but yet no diagnosis is forthcoming.
She has baffled the doctors. I asked if LBD has been considered and it was obvious that this condition had not even been considered despite the huge amount of information I have supplied demonstrating all the symptoms. Now she will go on a year + waiting list for a neurologist in Kingston. After 4 years we would just like to know what is going on.
Thank you for your time.
Hi Janine: Very sorry for what’s happening with your wife. It’s so frustrating to be confident of your own analysis, and have it dismissed or taken less seriously than your evidence warrants. The doctors may have other reasons for their discounting LBD, but it could also be pure ignorance — not willful ignorance, but just unknowing. I think that I would ask them what they suspect it might be, and what their recommended course of action is — despite being baffled, they should have some idea or hunch at least, and knowing what it is may allow you to more effectively present your own analysis as a viable solution.
If you’re in Kingston, Ontario, the hospital may just not have the broad level of experience of a huge centre like Toronto, and even here, many know nothing about the condition. If results are unsatisfactory and dangerously inconclusive, perhaps you can seek opinions elsewhere.
I can only imagine how difficult this is for you, especially with the added worries with COVID-19 now out.
May you find some solutions, and effective treatments.
Strength to you! Timothy Hudson
It took 6 years to get doctors to realize that they couldn’t find anything wrong. Symptoms started about 10 years ago. Started with imbalance. Went to multiple doctors. No one could give a diagnosis. I made a list and kept it going of all that I was seeing. FINALLY, I pointed out everything to our primary care doctor, who is a geriatric internist, and all symptoms pointed at Lewy Body Dementia. The doctor thought for a minute and said to me, “You are correct!”
It was the MRI of the brain showing cognitive imbalance that made me start researching on the internet.
When I found Lewy Body and the symptoms, he had all of them but hallucinations.
I have ended up not loving him anymore (which stopped after 3 years of marriage!!!) but finding I’m a caretaker of someone who isn’t the person I married 12 years ago.
You be strong and keep after doctors! The only firm way to confirm Lewy Body is an autopsy. But list symptoms and prove to the doctors the things you are seeing. Someone will diagnosis your loved one. It is a great relief when they do.
Here’s a supportive hug to give you strength to endure the road ahead of you.
I read this article and though it has prudent advice it doesn’t help me or my situation. My husband has LBD and PTSD. We had a serious enough incident last year that required me to call 911. My husband lost all reason and cognitive thinking ability when he left the gate open and one of our horses got out of the pasture. He went into a rage which was eventually turned on me when I hid his guns. Luckily the police showed up and calmed everything down enough that I could leave the house and sleep in a motel for the night. The night away from home allowed me to contact his psychiatrist and get advice on how to proceed. I was advised to talk to the magistrate and have my husband picked up and placed in involuntary care. This would allow time to for doctors to review his behavior and to make any needed changes to his medications. I agreed as the episode had resulted in me on the garage floor and my husband kicking me.
We did the involuntary commitment and my husband immediately contacted an attorney and wanted to file charges against me for stealing his guns, wanted me removed from our home and all medical information on him kept from me. I had medical POA which had been put into place after his diagnosis; the VA doctors totally ignored this.
His meds were changed, he remained in psychiatric care for 7days and was released. I was scared to death!!! So far the anti anger meds are working enough that his anger hasn’t returned to physical abuse but I am extremely careful what I say or do. It’s like walking on egg shells all the time, I never know what or when his anger will be triggered. Just FYI for you, there are those of us out here who live this daily.
That’s a difficult, but important cautionary tale, Donna. Thank you for sharing. Certainly there are times where a Power of Attorney for medical care will not be enough, if the person with dementia is high functioning. But one doesn’t consider these things typically, nor early, in most cases. The vast majority of people will never need this, but as you point out — there are those who live this daily.
> I hope you are able to stay vigilant, but also still have some life in your hours, which must be difficult as you are constantly “walking on eggshells.” I hope you also have your escape and local aid options for yourself planned, just in case. It may be that “Smart 911” operates in your area, so that any call to the police or emergency services will have notes on what to expect, history, etc. This is a great service, and well worth looking into if it’s available near you.
> Clearly, though, one cannot prepare for any and every possibility. You’re in a super tough spot, with many risks, and I hope you have support nearby, and social contact as well as professional assistance.
> Safety and strength to you, Donna! Timothy Hudson
How much of this violent/threatening behavior are you aware of in others? I see precautions that should be taken but what are the background cases that precipitate these warnings? I have experience with DLB case which resulted in a death.
Hi Terry: I have not had direct experience with this, but am familiar with a few cases in my groups that have experienced very challenging situations, and its upon those that these precautions are based. It is not prescriptive, nor binding, and is solely intended to help a person ensure they limit potential risk.
I’m very sorry to hear of your own direct experience. In my case, I’ve only heard of this in quite rare situations — but as with anything, rare in no way means unheard of. Regardless, one must be both constantly vigilant and as prepared as possible.
Strength to you. Timothy Hudson
Dealing with similar situation. Does your husband remember the “episodes & the conversation during the episode?”
After the fact?
Is there anyway I can email or print this article? I would like to share with others.
Hi Sandra — You are welcome to share any and all of these articles for the purpose of educating or helping anyone with LBD — but I appreciate you keeping the source clear, so they are not misattributed (and in case anyone has questions, I will answer them personally, as I am here).
> Strength to you! Timothy Hudson
My husband just had a psychotic break and it was very scary and unexpected.
He was diagnosed with LBD with Parkinson’s disease 2 years ago. However, he has had it for several years, I’m sure.
He was stable and unimpressive at Christmas, and two weeks later he couldn’t sleep, had poor appetite, poor cognitive skills, and was hallucinating with delusions 24/7. He got out of house to chase his demons five times, and was barefoot in the snow on one occasion. Agitated and restless. Falling frequently.
Neurologist wanted to put him in Geriatric Psych but no beds available. Said take him home and try to muddle thru until they can get him bed.
Next day he fell and hurt his leg. I was concerned it might be broken (hurt to put weight on it), and with friends and lots of help, took him to ER. He was admitted, and finally got some help.
After five days he was transferred to care facility. Now he has no hallucinations, or delusions, is walking with a walker, eating and sleeping, and you might wonder why he is there.
But I am so relieved for my safety and his. What a dramatic flip of symptoms!
Very sorry for the unexpected psychotic episode, Connie. Sounds to me like you did absolutely everything right on a very difficult situation. Very happy he was admitted and has made such a dramatic improvement. You need a rest to recover, yourself. I hope you can get one now, on this relative period of calm.
And here’s hoping that despite the wild fluctuations many people, including your husband, experience with LBD, that this is not repeated.
Strength to you! Timothy Hudson
What do you do with people you suspect have LBD- many of the symptoms- but are in total denial and won’t see a doctor to get a diagnosis? That describes my mother.
It’s hard to know what to do. I’d try enlisting her doctor, or a family friend you can trust, so that it could appear to be someone else’s idea. If you provide the symptoms (and potentially any video you can get of symptoms, in case they’re sporadic, as is typical), I think many regular doctors would try to get her to go see a specialist. Sometimes it needs to be phrased as something that’s less upsetting than saying a dementia test. Could be a balance test, or reaction speed test. Hard to know, but testing is so important!
You’re doing a good thing, Dana, advocating for your mother. Strength to you! Timothy Hudson
My beloved partner died three years ago from, we believe, Lewy Body Disease. All the complications you have described seemed to happen. i retained my love for him, but my sense of dis-connection became extreme, after he threatened to kill myself, the smallest grandchild and then himself. Somehow, the threat to the child, because he adored the little ones, made the most difference to my feelings. It was hard to overcome this and have faith that it was simply the dementia speaking. My question is, do Lewybody sufferers actually make such dire plans, then carry them out? I trusted that it was just an ‘episode’, but of course, and sadly, because he got much happiness from the children, I could not allow visits from the small folk, if there was only me there. I did not want them to be either threatened or to witness a distressing event. What a terrible end for such a beautiful family man. He had to eventually go to a secure ward in a mental facility, where i think he was moderately happy. I visited him every day, but was not sure if he knew me. Perhaps it was more for me than him, that i went. But, only a few hours before he died (in my arms) he smiled at me and said, “i want you to do something for me. Get a better man”. There isn’t one, and I am not looking. After I recovered from the extreme fatigue that years of caring seemed to bring, and began to understand more about the condition, I regained my love of the man that once was there, and in a way, found something quite special about the years of caring, which i feel sure, he would have done for me, if the situations were reversed. No regrets, just love.
That is quite a tale, that really embodies the roller-coaster aspects of LBD, Anna. Thank you for sharing it.
I’m not a doctor, so I can’t comment on how likely it was that he could make plans to follow through on his very worrisome threats. I know that some people have followed through, but whether it was planned, or just “in the moment,” I’m not sure anyone could know with certainty. You definitely did the right thing having him in a secure ward, both for you and the little folk. Your own safety must always be paramount. And by visiting him daily, you ensured he was very well cared for. You were his angel.
The final statement he made, that “I want you to do something for me. Get a better man,” is profound, and really embodies how the condition can fluctuate so drastically, from psychoses to lucidity, sometimes right to the very end.
You did a good thing, and your lack of regrets will help you stay filled with love. It’s very inspiring.
Strength to you! Timothy Hudson
Reading all this helps with me and my step moms situation with my 85 year old dad. I live in a different state, Illinois and they’re in California. I can’t help as much as I want, any suggestions?
Sorry for how all this is going for your dad, and for your mom helping him, Patrick. The only suggestions I have are to visit as frequently as possible, yourself, and truly be “present” while there, and also to see about hiring help for your mom, so she can get breaks, and more significant periods where she doesn’t have to be vigilant. If he’s 85, she’s likely not young, and full time care for a person with LBD is extremely difficult. Whatever you can do will help. The more the better.
Strength to you, and to your family! Timothy Hudson
This article is not to cause terror, but to show that it is important to always have a backup plan. It might not have helped in this particular situation, since I have limited knowledge of it. But constant vigilance is needed, even if something like this is extremely rare — just like locking ones doors on the house, prudent prevention is better than an extremely rare bad outcome, when it’s avoidable. Strength to all! Timothy
I’m not sure if anyone is still answering the forum, and this is not meant to scare, but I feel I need to share my story. LBD tragedy struck my family over a year ago when my father took my mother’s life.
My father was first believed to have Parkinson’s, but later they diagnosed him with dementia. I don’t believe anyone ever diagnosed him with LBD, but it’s extraordinary clear to us now that that’s what he has. Much like the previous post in the U.K. article, he is awaiting a competency hearing to see if he is competent to stand trial.
Does anyone know of an organization that might be able to make a brief statement about LBD symptoms during his competency hearing? I’m not asking for a diagnosis, just a rundown of the symptoms and how they can be potentially dangerous. I feel that the prosecution and probably the judge know nothing about this disease and its erratic dangers, and right now, the psychological evals are based solely on regular dementia. I’m in the U.S. FYI.
Either way, thank you so much for the helpful info on this website. I only wish my family would have stumbled upon it sooner.
Please, if your loved one suffers from LBS, keep all household items that could be used weapons stored away. My father was a kind and gentle man. We never expected this. The risk is small but not worth it.
So terribly sorry for what happened, Nate. But thank you so much for posting, especially as a cautionary tale. Although this is far from common, it is not impossible, and I certainly wish that everyone would always plan for every possible risk. Staying safe is so very critical.
I can’t provide you with testimony as an expert witness, since I’m a lay person, not a medical professional. But there are many geriatric psychiatrists, and neurologists I would expect could speak on this. The bigger institutions tend to have the most informed specialists, and I’d start there.
I hope things turn out as well as can be, and that you are able to move forward, yourself, despite the multiple horrors you’ve been subjected to. And that the justice system proceeds intelligently, not just punitively.
I’m glad we were able to have the offline exchange. Thank you for your candour.
Strength and recovery to you.
I had a terrible break last night. The rage finally over boiled and I lost all self control. Because it comes and goes my family thinks that I’m having a sky is falling pity party again and again. I’ve exhausted my family, they have placed me in a independent living facility. I mostly enjoy it here I make friends easily. My youngest daughter has guardianship over me and recently we’ve butted heads over my finances, she has been on vacation and told me:
I am very hurt by the way you talk to me and treat me. Everything I’ve done for you – bail you out of jail and keep you out of prison, for one – has been in the best interest of you. I have dedicated countless sleepless nights, hours and days of my personal and work time to serve you.
You claim I’m not working with you but I’ve done everything you’ve asked me to do, regardless if I think it’s the best thing for you. You begged for us to place you on independent living at Pacifica. I did it. You wanted to sell the note of your mortgage. I did it. If I didn’t, and you were able, you would have done it months ago. You wanted to be under the care of hospice. I did it. And yet you complain I’m not working with you? You are never satisfied.
I am legally obligated to keep you safe from yourself and others. I took this obligation on because no one else would. And now you’ve turned on me, like you do to everyone who helps you. I’m a constant target of your abuse, it’s toxic, and unfair. You are a victim of your own choices when things don’t go the way you thought or when you change your mind at the last minute. Your lack of self awareness limits your ability to think that maybe your problems are because of you. Not because of me or anyone else.
So, as my last attempt to do as you wish, I will no longer keep a personal relationship with you. Our relationship from here on out will be at the obligation of my guardianship and purely transactional. When you need something, please refrain from texting or calling me. You can email me and I’ll respond when I am able. If I have questions, I’ll call. I suggest you review the guardianship paperwork so you can understand what you are legally able to do on your own and what you’ll need help with.
I hope you find the happiness that you seek. That’s all I have to say.
My daughter who has no clue what I’m going through put me in a mental facility after getting out of jail. I had been arrested while seeking help at an emergency room. The charges have since been dropped. I don’t know what to do? I can’t talk to my family for fear that they will turn their back on me again . I was in such a rage last night I hung up on the suicide hot line
I’ve responded to another post on this thread… I have experience with an individual who was tried and sentenced to prison following a dispute with another individual with lbd. As you stated the no one in the court had experience with lbd and it’s dangers
What a punishing scenario for all involved, Terry.
For a situation such as this, I’d see whether a neurologist or specialist at an LBD Centre of excellence could be engaged as an expert witness. A psychiatrist might as well, but in my limited experience, it’s only been geriatric psychiatrists that have the expertise with LBD.
You add a very worthwhile cautionary perspective, and one others should benefit from.
Strength to you. Timothy Hudson
My Dad has had the illusions for a few months now, what worries me is he sees people that he is now categorizing in groups, the women that want to have sex with him, the men that are upset about it and are trying to hurt him and the couple that have powers. It’s pretty bizarre to say the least, and he sees them every night. I dont know how much worse the characters will get.
Sorry for what’s happening with your Dad, Donna. I wish there was a way to have certainty about the progression. For many people, things do not worsen significantly in this aspect, although this is definitely not universal.
He’s very fortunate to have you on his side — you are his angel.
Strength to you!
My dad has LBD and it’s been a year that my family and I found out, we took him in and things haven’t been easy but we’re working around it, but lately his hallucinations are sadly getting crazier and he keeps thinking someone is breaking in: one day I was getting ready for work in the morning, and I guess I wasn’t loud enough, and he thought I was an intruder. I kept saying my name and telling him that it is me, but I saw that nothing was going to get through and he tried to attack me. My family was able to wake him. It’s sad that this has happened, but he was only trying to protect us. Now he has dreams that we’re disappointed in him for not protecting us, and he tried to leave in the middle of the night. Luckily, again, we were able to catch him and calm him down and stop him. We’re trying to be there as much as we can, but I have to admit it’s difficult and heart breaking to see this happening to my father.
Very sorry for what’s happening with your dad, Taylor. You are certainly doing everything fabulously, and your reaction to his thinking you were an intruder was wise, even though you were unable to convince him of your identity. I hope this will pass soon, and that he’ll be calmer in the coming period. There’s no way to be sure — but you and your family are superstars for keeping him so safe, despite the countless challenges and so many unpleasant surprises. He’s blessed to have you as his angel.
Strength and courage to you.