Lewy Body Dementia (aka LBD) very frequently carries symptoms of REM Sleep Behavior Disorder (aka RBD) with ultra-vivid dreams that are often extremely negative. It is estimated that up to 75% of individuals with LBD experience symptoms of RBD and carry them at the earliest stages, highlighting its clinical significance. My “Under Siege” painting is about the perceived experience of being under fire, defending myself and others, running, escaping, people dying around me (especially loved ones and furr-family) almost EVERY night for years, often producing feelings of distress, numbing, and despair. The results of these emotions will be a separate blog entry. RBD is a core clinical feature of LBD.
Summary: This entry highlights the connection between Lewy Body Dementia and dreams of REM Sleep Behavior Disorder, including its personal impact and clinical context. The summary covers the prevalence, some of the symptoms, emotional effects, and treatment approaches.
Tru here. This entry is by Truthful Loving Kindness (my full legal name) for https://truthfulkindness.com/. For comments or questions, please use that website. Writing is harder, so I have now begun to use “Grammarly” to edit. This sacrifices my particular writing style but improves readability and reduces the time I spend in the writing process. I am still on the free version of this blog, which means more ads. I am working to move to the paid version to avoid advertisements.
1am this morning: Exhausted with feelings of battle fatigue. Similar to so many nights in these past 25 years, Last night I got a total of 4 hours of very broken sleep. During those 4 hours, at various times, I was fighting for my life and those of others in mortal combat, surrounded by flames of fire, and responsible for getting a group of children to safety. Husband woke me twice because he could tell I was in distress, then I gave up on trying to sleep at 1 a.m. because I just could not face going back into that ultra-vivid, more real-than-daytime, horrid environment. Smells, sounds, tastes, … all of it adds to the feelings of despair and anger.
As of 12Jan2026, REM Sleep Behavior Disorder (RBD) has now been added to my medical record, but the symptom actually began about 1997, two years before my cognitive decline began. At that time, my husband made me bed rails because I kept waking up on the floor. After we moved and I began taking melatonin, that was not a problem. The ultra-vivid dreams that go with RBD (see reference above), more real than daytime events, have been part of my life ever since then, but the “acting out” aspect of those dreams has not been present. In January, I found out why.
“The (RBD) dreams often involve the perception of being chased or attacked by something or someone.”
NIH pamphlet on Lewy Body Dementia states that “The (RBD) dreams often involve the perception of being chased or attacked by something or someone.” That statement certainly matches my own experience during these past 25 years. Apparently, my medication was not controlling my symptoms well enough one night last month, and my muscles were no longer locked down to prevent movement. Someone was behind me, trying to kill me, and I hit them as hard as I could. Unfortunately i hit my Service Dog, who yelped and jumped off the bed. I have extreme sensitivity to Rx clonazepam (often recommended for RBD), but found out this month that one alternative treatment for RBD is melatonin, which I have taken for many years, self-medicating the acting-out factor of RBD symptoms. So the doctor simply increased my melatonin dosage, and I have had no further acting out of events from my dreams. See Link at the bottom of this entry.
“… it is normally easy to wake a person with RBD who is acting out a dream. Once awake, he/she is able to recall clear details of the vivid dream.”
Stanford points out the similarities and differences between REM Sleep Behavior Disorder (RBD) and night terrors; “In these other disorders, the sleeper is usually confused upon waking up. He/she does not become rapidly alert. In contrast, it is normally easy to wake a person with RBD who is acting out a dream. Once awake, he/she is able to recall clear details of the vivid dream.” Other comments are about common behaviors associated with RBD: “Shouting, swearing, flailing, grabbing, punching, kicking, jumping, leaping. Actions match the vivid dreams that they clearly recall. Sleep activities can result in an injury to patient or their bed partner. Uncommon (behaviors in RBD): walking, eyes open, leaving the room (those are all common signs of sleepwalking).” See Link at the bottom of this entry.
A 2013 article conclusion in Sleep Med addresses dream content differences between those involved with sleep walking/sleep terrors in contrast to those with REM Sleep Behavior Disorder (RBD); “Different threat simulations and modes of defense seem to play a role during dream-enacted behaviors (e.g., fleeing a disaster during SW/ST, counterattacking a human or animal assault during RBD), paralleling and exacerbating the differences observed between normal dreaming in nonrapid eye movement (NREM) vs rapid eye movement (REM) sleep.” See Link at the bottom of this entry.
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Note from 2016 on repeating theme: Last night’s theme was being trapped in different locations. The night before, my Care-Partner was in danger. For almost two years, I had the repeating theme of living in a boxcar and rescuing different groups in varying post-apocalyptic environments. One installment involved a group of women, another a family, and another a little boy “target,” sometimes spread over three, four, or even eight installments in one night.
Living with Lewy Body Dementia and REM Sleep Behavior Disorder has profoundly shaped my nights and my days. Sharing these experiences is not only therapeutic for me but may also help others feel less alone in their journey. If you or someone you know is living with LBD or RBD, remember that understanding and support can make a real difference. Thank you for reading and walking this path alongside me.
Associated Links on my own Blogsite: (2014-2020)
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Links to entries from other folks Living with Dementia of Lewy Body type:
Ken Clasper >> http://ken-kenc2.blogspot.com/2014/09/very-vivid-dreams-and-nightmares.html <<
Norrms at >> https://truthfulkindness.com/index-persons-with-dementia-pwd/norman-mcnamara/sep-2015/ <<
Links to SOURCES used in this entry: Stanford and others.
https://pmc.ncbi.nlm.nih.gov/articles/PMC6029467/
Sleep Med Link >> https://pubmed.ncbi.nlm.nih.gov/23601752/ <<
NIH Link >> https://www.nia.nih.gov/health/lewy-body-dementia/lewy-body-dementia-causes-symptoms-and-diagnosis <<
and “Science Direct” >> https://www.sciencedirect.com/science/article/pii/S0011502922001250#bib0047<< .
Further Research Links on other sites:
LBDA supplies this, which addresses RBD from ~12-20 minutes into the video.
Video below is from LBD Resource Center, with quite a few Lived Experiences, shared by care-partners of person living with LBD’s RBD:
Video below is from Parkinson’s Foundation of Excellence at Cleveland Clinic (but must increase volume):
Attached Picture:
This painting: Digital painting by me, finished on 07 Feb 2026, titled “Under Siege by RBD” (aka REM Sleep Behavior Disorder), which is a core clinical feature of Lewy Body type of dementia. These ultra-vivid dreams are almost always violent and more real than daytime activities. This painting is to go with my blog entry about RBD symptom. ~15 hours to complete. *** Used Alaina Jensen Acrylic Pour & Holo brushes on ProCreate application with Apple Pencil to compensate for my extreme tremors. Higher resolution image of painting available at my Flickr portfolio at >> https://www.flickr.com/photos/194191353@N04/ << .
Other contact options are FaceBook and “X” (aka Twitter), both under “Truthful Kindness”. On Reddit, i am at “TruthfulKindness” in groups “r/dementia”, “r/lewybodydementia”, and “r/alzheimers”. i dropped my LinkedIn membership quite a few years ago. If requesting “friend” status for any form of Social meedia, please send a private message explaining that you are a reader of my blog. …
* Admin issues:
Invested 13 hours on this text, plus 15 hours on art for this entry. ******* SUBSCRIPTION box is now at the bottom of each blog entry. … My own full legal name is Truthful Loving Kindness. My current formal diagnosis is still clinically at stage of “Mild Cognitive Impairment”, altho my Primary Care Physician and several other medical personnel disagree. In the past several years, We have agreed to quit seeing specialists for further clinical clarification of diagnosis and stage. Specialists are too far away, and the emotional roller-coaster is not worth it to me. My dementia symptoms are mostly Lewy Body and Vascular types of dementia symptoms, but SPECT and PET scans show my brain damage is currently most serious in the temporal lobes, which creates a lot of similarities with Logopenic variant of PPA (sub-type of Fronto-Temporal type of dementia). Current theory for the cause of my dementia symptoms is 33 years of un-diagnosed and un-treated Lyme and Babesia (which specifically targets the brain functions) before 5 years of intensive treatment for tick-borne diseases, plus probable nocturnal seizures. … ******* … Text Copyright © Truthful L. Kindness on 08Feb2026. … You can find more about me in this blog under the “About Me” tab (although that page was posted long ago and also needs an update). Feel free to leave your thoughts here in the form of comments, but please filter your comments with truthful loving kindness to all concerned. … *** 2026 i have begun to use “Grammarly” editor; This sacrifices my particular writing style but improves readability and reduces the time I spend in the writing process. I am still on the “free” version of the blog (except for the domain name TruthfulKindness), so I notice there are now quite a few more advertisements on the page. Sorry. Currently in negotiations to transfer to the paid version of the blog to avoid advertisements. I have no control over which advertisements are shown. … ******* … I don’t mind re-posting of things I write, but if you re-post, then I expect you to make it clear this is NOT written by you. My authorship as Truthful Kindness (my legal name) must be clearly identified, and you must provide a very prominent Link to my website so that questions and comments can be addressed to ME personally at http://www.truthfulkindness.com.
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categ: important/crucial & Sx/Dementia Symptom Tips. tags: behavior disorder, dementia, dreams, lewy body, Mental health, nightmares, persons living with dementia, RBD, sleep, symptom, terrors. Add to Pgs/ LBD, S&S Categ: Earliest symptoms, Mood, Sleep. Done/S&S but not LBD.
Summary: This entry highlights the connection between Lewy Body Dementia and dreams of REM Sleep Behavior Disorder, including its personal impact and clinical context. The summary covers the prevalence, some of the symptoms, emotional effects, and treatment approaches.
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