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.

PeClick to go to the Audio Recording of this articleople 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.

Reduce Risks.

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.

Strength!
Timothy Hudson.

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.

8 thoughts on “Stay Safe! Lewy Body Dementia Psychotic Episode Dangers.

  • June 16, 2016 at 1:02 pm
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    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?

    Reply
    • June 19, 2016 at 5:44 pm
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      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!

      Reply
  • August 16, 2016 at 3:36 pm
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    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.

    Reply
    • September 26, 2016 at 11:15 pm
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      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!

      Reply
  • April 4, 2018 at 1:58 pm
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    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.

    Reply
    • April 14, 2018 at 5:47 pm
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      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

      Reply
  • May 23, 2018 at 3:24 pm
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    Is there anyway I can email or print this article? I would like to share with others.

    Reply
    • May 28, 2018 at 1:18 am
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      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

      Reply

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