REM Sleep Behavior Disorder and How to Cope with Hallucinations

Today I’ll respond to 2 questions posted in the comments section yesterday.


1. David, Could you post a link or 2 on the REM articles?  I would be very interested in reading some of them. Maybe you could do a post on what you read if that would be easier? Thanks, Inge’

One of the best sites for an overview on REM Sleep Behavior Disorder (RBD) is at this site. RBD is characterized by the acting out of dreams that are vivid, intense, and violent. Dream-enacting behaviors include talking, yelling, punching, kicking, sitting, jumping from bed, arm flailing, and grabbing. An acute form may occur during withdrawal from alcohol or sedative-hypnotic drugs. RBD is usually seen in middle-aged to elderly people (more often in men).

The exact cause of RBD is unknown. It may occur in association with various degenerative neurological conditions such as Parkinson’s disease and Lewy Body Dementia. RBD often precedes the development of these neurodegenerative diseases by several years. Not all people with RBD develop Parkinson’s disease or Lewy Body Dementia.

2. David..I do so enjoy your posts.  My step-father has LBD and life is very difficult for he and my Mom.  One question that I have that puzzles me is “Why can’t I convince my step-dad that his hallucinations are not real?”  His worst ones always involve my 80 year old Mom “being” with other men.  He then calls her horrible names and screams at her for hours.  He also has capgras syndrome and believes that she is an imposter or that he is in the wrong house.  He currently takes Ativan..(has been on this drug for years) and also Rispiradone.

  • First…..remember the old expression, “Perception is reality!”

  • Don’t try to argue or rationalize. Realize that hallucinations and delusions seem very real to the person who is experiencing them and arguing will not build trust.

  • Offer reassurance and validation ‑ “I know this is troubling for you, let me see if I can help.”
  • Check out the reality of the situation. Maybe what they see or think is true. I remember one of my female patients with schizophrenia who complained that she smelled something ‘bad’ in her kitchen. She was committed by her husband several times for this. After further investigation, it turned out that the refrigerator in the kitchen was leaking freon.
  • Sometimes things in the environment may be misinterpreted (i.e., glare or shadow in the window, noisy furnace, etc.) and be frightening. Explain potential or actual misinterpretation, e.g., that the noise is the furnace turning on.
  • Try changing the environment if needed. (A mirror may become distracting or confusing; adding more lights may be helpful at night.)
  • Check to see if the person’s hearing or vision needs are met to reduce excess disabilities that contribute to these problems.
  • Remember that whispering or laughing around the person may be misinterpreted.
  • Do not take accusations personally.
  • Use distraction ‑ activity, conversation, food, music ‑ try to pull the person’s attention from the delusion or hallucination.
  • If the person asks you directly if you see or hear something, be honest but don’t struggle to convince or reason with them about what is real.
  • Try to respond to what the person may be feeling ‑ insecurity, fear, confusion.

I personally remember my own RBD exactly as described above.  The dreams and nightmares were terrible — vivid, intense, and violent. Sometimes I didn’t want to go to sleep because of the  talking, yelling, punching, kicking, sitting, jumping from bed, arm flailing, and grabbing. I remember hurting Pam several times. I can’t say how sorry I was and am for that. At the time, I just thought I was trying to work through unconscious unresolved issues and anger. But I never was that angry in real life! One night I actually hurled myself up out of bed and threw myself over onto the floor….what an awakening experience! It scared the bajeezies out of me. My Dr. brushed off all of these symptoms. What can I say?

Warmly………….David

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11 Responses

  1. Hello David,

    Thankyou for the information on hallucinations. Building a repetoire of tools helps me to envisage the future. I only hope I can cope.

  2. My husband has Lewy Body & in the early stages he also accused me of having affairs or flirting w/ other men when of course I wasn’t. I was able to get past these episodes of anger by validating the underlying anxiety– Yes, I can understand that you’re afraid you’ll lose me because of your disease– and reassuring him that I loved him and only him.

  3. very useful information. just discovered your site via ‘the tripover’ and will be passing it on to friends/carers/pwd. thankyou, freda

  4. Thank you so much for answering my question. My grandmother has Alzheimer’s and she is very active in her sleep. She talks more than any of the violent behavior.

    What is strange about it that she often is very easily understood when she is talking in her sleep. However, when she is awake, she has problems forming words or sentences or just following a conversation.

    I look forward to reading the site you listed and am trying to catch up on your posts since I just discovered you!

  5. My dad suffers from LBD and also experienced some of the same delusions as Step-Father above: thinking my Mom (his primary caregiver at the time) was an imposter – he called my brother, me and the police on several occasions, seeking to be saved from “the imposter”. He often thought she was a stranger holding him hostage in the house, and he wanted to know where Mom was. Later, he thought Mom was a worker in the house, and the house was an inn or an partment complex. He thought Mom was the front desk person, the office manager, the maid, the cook, the nurse, the pedicurist, etc. All day with Mom, he would tell her what the other lady did or said… thinking she was several different people at once. (Mind you, she is a wonder woman…)

    Later on, for a few months, Dad thought Mom was with other men. He would often hallucinate that the men were in the house with them, sitting next to Mom, arm around her on the couch, standing by the stairs.

    Dad had suffered from RBD years ago.

    About the “wrong house”, Dad had delusions that there were in fact 2 identical houses, but only one was their real house. 2 years ago, Dad was lucid about 23 hours per day. At that time, he explained to me how his perceptions changed in the moments he was not lucid, how his “realms” shifted when “Lewy” overcame him. He explained to me that his logical mind knew that the painting on the wall of their dog Sam was theirs -had to be theirs – therefore this was their house. However, he said Lewy would “come over him” (he made a gesture of something coming over his left shoulder, to the front) and nothing anyone could say or do could convince him that the house was theirs. The best he could accept was that it was identical to theirs.

    Dad was a member of MENSA years ago, was always very intelligent, logical, mild-mannered and loving. We now think he suffered from LBD long before the symptoms overcame him in obvious ways.

    Another ongoing hallucination: Dad saw “stickmen” for about a year. He described them as little (12 inches or so tall) and made of wood-like substance with very basic features, like stickman drawings.

    David mentions some of the tactics we used to try to alleviate some of the challenges:

    Don’t try to rationalize, argue or correct – rather, just treat the “symptom”, the fear, insecurity or confusion.

    Keeping the areas clear and well-lit may help prevent accidents or falls. Mom got rid of all of her plants, as she thought Dad mistook them for other people or thought the branches were perhhaps stickmen. The hallucinations continued, but at least the house was safer for Dad.

    We had Dad’s vision tested around that time, as he couldn’t read anymore either. His eyes were 20/20. We think the problem may have been how the brain interpreted the info.

    Using distractions helped a lot. You can’t convince someone what they perceive is not real when Lewy is insisting otherwise.

    Dad declined quickly, but is still with us. He’s now in a Long Term Care Facility, in a wheelchair, and appears “disconnected” from reality most of the time, but comfortable and well-cared-for. My Mom goes to see him every day, feeds him lunch, visits, does all his laundry (despite the service being available and part of the costs). I go see Dad once a week and bring my girls to see their Grand-papa.

    I love my Dad and miss him terribly. I’m fortunate in that Dad has some seemingly lucid moments here and there. We sometimes share such heart-wrenchingly beautiful moments, that it feeds my soul until the next such moment. I believe Dad feels our love for him and that’s what matters.

    Last Sunday, when I was kissing Dad goodbye, I told him he was “the very best Daddy in the world”. He quipped “I’ve always admired your objectivity.”

  6. Yes, David! I still remember how 10 or 11 years ago I talked my husband into consulting with his Dr. when those RSBD episodes started, and the Dr just brushed off. Then I would go with him and talked and talked describing the whole incident -kicking, punching (he actually punched me several times), screaming, knocking off everything on his nightstand, and falling out of bed. Sometimes they didn’t even respond; when I insisted -“WHY is that happening?”-, they would give me a blank look and say, “Well, who knows…? He might be acting out some aggressiveness”. Aggressiveness, Sherman?? Yeah, sure! He was one of the gentlest persons I’ve known.
    WHEN ARE THE MEDICAL SCHOOLS GOING TO GIVE MORE INSTRUCTION ABOUT THESE ILLNESSES?? Even some residents don’t know about it. Registered nurses stared at me when I mentioned Lewy Body Disease, and told me “I’ve never heard of that”.
    Raquel

  7. […] Posts New Year’s Eve and HOPEMiranda’s Thought Provoking CommentHappy New Year 2009REM Sleep Behavior Disorder and How to Cope with HallucinationsTired of Sudoku? Want some ‘Square Wisdom’? Want to KenKen? Learn How Today!AboutGod will give you […]

  8. I think this is a nice post.

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    Thank you

  9. for me, the great majority of my RBD dreams were of violent content, whereas hallucinatory states upon waking (hypnogogic) were emotionally neutral or even pleasant (ego-syntonic).
    You get the RBD years and years prior to the other disease manifestations and thank God that probably over 60% of MD’s these days know that clonazepam (klonopin) cures it.
    Hallucinations and delusions as psychotic features are not dream related, but wakefulness-related and occur primarily in early stages of LBD, but in later stages of AD, and most other types and they are negative in content usually (ego dystonic.

  10. My Dad has RBD and over and over again I’ve asked myself the same question posted by your reader Raquel… “WHEN ARE THE MEDICAL SCHOOLS GOING TO GIVE MORE INSTRUCTION ABOUT THESE ILLNESSES?”. It’s mind-blowing how in the dark so many of the doctors we’ve seen are. And it’s just downright disgusting how some could care less to even know. Hopefully that will change one day as we all work to bring awareness to these issues. Just yesterday my Dad was interviewed by KABC news here in Los Angeles about his experience with RBD. I’m so proud of him for agreeing to go public and I hope it helps to shed some light on this condition and all those associated with it.

    • You’re absolutely correct. I never learned about it in med school. Neurologists learn about it during their residency. But it would be super if all med students did know about it? It certainly would help all of us!

      David

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