Recently asked about hallucinations.
My super-simple explanation is that, when primary cause is dementia,
hallucinations are NOT like day-dreams or night-dreams.
They are day-or-night REALITY:
“Reality” shows have become a popular thing, but is it “reality”?
We see commercials, rewind to get a missed comment, etc.
It is not reality.
You didn’t feel the pain of an animal bite, you didn’t feel the cold of the winter storm, or rain on the face.
Hallucinations give you all this and more.
Hallucinations are not unusual in later stages of most dementias, but are often seen earlier in dementia with “Lewy Bodies” (LBD). See Links at base of article.
Part 1: What does a hallucination feel like?
Sound, Smell, Sight, Touch, Taste.
Think of our sensory perceptions as internal traffic-control mechanism for the brain.
i suspect most of us have seen disaster (or terrorist) movies
where the traffic signals (green-yellow-red traffic lights) are no longer synchronized for safe traffic patterns.
This causes accidents, confusion of control-authorities, fear among population,
and loss of ability to respond to emergencies.
When we are in the middle of this disaster,
our years of trusting and reliance on well-functioning “traffic signals” of our pre-dementia minds
makes it almost impossible to separate ourselves from this unfolding chaos.
In the same way, our reliance on what we see, hear, smell, touch, and taste determines our reality,
… but now we are receiving false signals.
It is VERY difficult to accept someone else’s “reality” as more accurate than our own;
to somehow convince ourselves the smoke we smell, the sounds we hear, etc … are not really there.
This IS real;
my nose tells me something is smoldering.
My ears tell me a sound IS happening.
My eyes tell me that bird is sitting on the kitchen floor.
So who do i believe? What is reliable ?!!!
a) my own senses?
b) my friend with their words of comfort?
c) my service dog’s non-reaction to the smoldering smell, sounds on the porch, or bird on kitchen floor?
… Who can i really trust with my REALITY (and safety) ??
1) For ME, one thing that is NOT helpful is to say “it’s okay; dont worry”.
Hummmmph; YOU may be “okay”.
You are not the one being told that someone else’s reality is real … and YOUR reality is false (unreliable).
No; that is definitely NOT okay.
2) At this stage, the service dog is one of my most helpful tools.
His signals provide reality-check without emotional involvement (unless there IS a bird on the kitchen floor, LOL).
But have not trained him to tell me if bugs are really on my hand, or if a radio is playing (cannot train for infinite possibilities);
3) so i must rely on sensory perception from a TRUSTED person for that
4) — the challenge is then to set aside my own perceptions, and accept their reality as higher priority than my own reality.
5) Have thought it might help to have them take photo (my tremors prevent clear photos); theorize photo would help, but i have not yet remembered to try it, in midst of an hallucination.
Must suggest that when i am in later stages, much better for folks to enter my own reality, and
just go with the hallucination.
Trying to convince me that what i perceive is false will probably make me feel like i am accused of being a fake
… and if you succeed; that my whole world is fake … including YOU !!!
Hallucination is like theatre of the mind;
More real than Pana-Vision. Better than 360-surround-sound.
With no tell-tale camera-man in sight.
We are all fairly certain that the T-Rex is not going to jump off the movie screen. The alien robot cannot truly reach us with their disintegrator rays.
… so from the safety of your home theatre, many can enjoy the distorted reality without fear of direct involvement.
When we experience the reality from our Theatre of the Mind, we do not have any context beyond our hallucination;
it IS real !!
Please be aware, i may need someone to sit with me;
giving me the reassurance that i am safe when this cerebral theater closes down.
Talking me thru it, talking me out of it;
demanding that i “get a grip”, ignoring my own reality and re-entering YOUR reality,
is not as simple as clicking your heels three times (Wizard of Oz).
According to Wiki, “A hallucination is a perception in the absence of external stimulus that has qualities of real perception. Hallucinations are vivid, substantial, and are perceived to be located in external objective space.” (See LINKS).
Michigan Medicine (U of M) calls it miswiring; “The mind often plays tricks on people with dementia as brain cells degenerate.
Their brains often distort their senses to make them think they are seeing, hearing, feeling, smelling or experiencing something that isn’t really there.”
(See Links; UofM and “Sound Hallucinations”).
My Sound (auditory) hallucinations began 2008 as complications from 31 years untreated Lyme Disease.
Lyme specialist gave me very simplified explanation.
He said that my sound hallucinations –for ME at that time — were caused by
brain inflammation pushing on the sound-processing section of my brain.
Sounds from my past (hymns etc) were re-enacted in my current sensory experience.
So i am experiencing the sounds in real-time
… but actual sounds were received from ear to brain at some time in the past, and stored in audio memory.
Infections of various types (Tick-Borne Diseases, Bladder infection, etc) can trigger hallucinations even without general cognitive decline,
… or intensify the problems in someone who has dementia symptoms. Also 2018 study found 16% of those with hearing loss experienced auditory hallucinations >> https://pubmed.ncbi.nlm.nih.gov/29554989/ .
Smell (olfactory) hallucinations came next for me, probably in 2012 or 2013.
Asked among my friends a couple years ago, and
the most frequent SMELL hallucination (for me AND my friends) is something hot and dangerous;
the smell of a hot burner, or frayed electrical cord … smoldering.
Other varieties can be the smell of farts, poop, etc.
But smell hallucinations can also be pleasant; once or twice i have had
the smell of new-mown grass — in cold winter, in the bedroom, shut up under the covers. LOL.
(See Links; “Smell Hallucinations”)
In “Complex Visual Hallucinations; Clinical and Neurobiological Insights” Manford and Andermann summarized three pathophysiologic causes for complex visual hallucinations;
“The first mechanism involves irritation (e.g., seizure activity) of cortical centers responsible for visual processing.
Irritation of the primary visual cortex (Brodmann’s area 17) causes simple elementary visual hallucinations,
while irritation of the visual association cortices (Brodmann’s areas 18 and 19) causes more complex visual hallucinations.3
These data are supported by both electroencephalographic (EEG) recordings and direct stimulation experiments.2” .
(See Links; NCBI).
i have seldom experienced sight hallucinations, but on those few occasions, they have almost always been bugs; bugs on my skin, skin of grandsons, skin of dog, or bedroom floor. i dont think i have had a daytime sight hallucination in several years (unless i just ignored then forgot, LOL). Retired Dr Jennifer Bute wrote about one of her visual hallucinations here >> https://truthfulkindness.com/index-persons-with-dementia-pwd/jennifer-bute/hallucination-goat/ .
i dont think i have ever experienced a hallucination of touch sensation.
i dont think i have ever experienced a hallucination of taste sensation.
Another Type of hallucination that i rarely see listed is “Nocturnal Hallucination”.
These have also become less frequent for me.
((… or maybe not, LOL; Husband says i mentioned one last week.))
Some folks call these “night terrors”, but i think there is a difference.
Cannot remember where, but i read night terrors have only 1 or 2 episodes per night,
but these events are over and over and over again during the night, creating strong avoidance of sleep.
These are extremely vivid; more real that daytime reality, and often have a repeating nature to them
… in that i often return to the same environment when i fall back asleep,
perhaps with a new set of characters, but usually same environment.
More from me here >> https://truthfulkindness.com/2016/01/19/impact-terrors-dreams/ .
Retired Dr Jennifer Bute writes about nocturnal hallucinations while staying away from “home” here >> https://truthfulkindness.com/index-persons-with-dementia-pwd/jennifer-bute/nocturnal-hallucinations/
… and writes about the differences between illusion and hallucination here >> https://truthfulkindness.com/index-persons-with-dementia-pwd/jennifer-bute/night-illusions/ .
Note re Capgras DELUSION: Capgras is a delusion (similar to hallucination, but there are some differences). aka “Imposter Syndrome”. There is pretty good write-up on this topic at Web MD (which is the website recommended by one of my specialists) >> https://www.webmd.com/mental-health/impostor-syndrome-capgras .
UPDATE: i was asked how care-partner can help during and after hallucination:
For ME right now, one of the big things is do NOT say “it is OKAY”.
i need questions of what i am experiencing, so that i can better clarify in my mind what is happening.
At this stage i will probably ask what YOU see, hear, and smell.
Personally, i need to hear your voice, and be Lovingly held while my brain struggles to reconcile what is REAL. (Held, but not restrained)
THANKS for asking .
LBDA >> https://www.lbda.org/go/symptoms-0 ;
Wiki >> https://en.wikipedia.org/wiki/Hallucination ;
UofM >> https://healthblog.uofmhealth.org/brain-health/illusions-hallucinations-and-delusions-how-to-spot-dementia-symptoms ;
Sound Hallucinations >> https://truthfulkindness.com/2018/12/11/tinnitus/ ;
Smell Hallucinations > https://truthfulkindness.com/2015/01/19/smell-hallucinations-dementia/ ;
NCBI >> https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2660156/ ;
… and another one from me >> https://truthfulkindness.com/2017/06/01/hallucinations-forgetting/
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