Anyone have any experience with Lewy Body dementia? My aunt’s Dr. suspects it is what her issue is, but we can’t get a neurologist until July.

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Shellbelle27 Asked May 2021

Anyone have any experience with Lewy Body dementia? My aunt’s Dr. suspects it is what her issue is, but we can’t get a neurologist until July.

She can’t see due to degeneration in one eye and a blood vessel issue that will be slow to resolve over time in the other, she sees only shadows. She also isn’t physically able to walk as much anymore and can’t hear well. When the second eye experienced vision loss, her dementia took a hard nosedive, like a switch. She now sees hallucinations or either her brain creates images to try to compensate for vision loss. She gets extremely upset and says creepy things like there are people in the house to kill us all and that animals are in the house and people stole everything. It’s very real to her and she gets so worked up we are concerned for her high blood pressure. She becomes super mean to us as well saying she hopes we get sick too and how nobody wants to help her or how mean we are. We literally do everything for her and the comments are wearing us down. This is now 24/7 and there hasn’t been a respite in days right now. Her dr just says give her melatonin to get her to sleep, but we can’t do that all day and night. Hopefully others have some tips to share.

Alzheimer's & Dementia Hallucinations Lewy Body Dementia Vision Loss

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score 1 · Answer 1

Have her doctor look into Anton’s syndrome. My mother recently had an occipital stroke that took her vision. Antons syndrome tricks the brain into showing stored images and memories as sighted surroundings. She is having the same symptoms as your mother. Hallucinations, vision loss, can no longer walk be herself(even though she still tries) and the off the wall comments. My mother is in a nursing home and calls and begs me to “come take her home”. Crying and hysterical. It is so difficult. You are a better woman than I, there is no way I could handle this on my own and hold down a full time job as well. I hope you find some help soon. It is always good to know you aren’t alone.

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score 2 · Answer 2

LBD and Parkinson's are now often thought to be different manifestations of the same disease. In LBD the cognitive (dementia related) changes occur first and in Parkinson's it is the motor (physical) changes. I was just in a webinar yesterday where the medical professional said that upon autopsy of the brain it looks the same for LBD and PD. Neither diagnosis is necessarily wrong. She also said that the LBD symptoms precede the motor symptoms by about a year. Expect that you will be dealing with both the physical and cognitive issues.

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score 1 · Answer 3

Although you say your mother can't hear well, putting on music could help distract her thoughts to the sound in place of the hallucinations she experiences.
Also, do you think an eye mask (similar to what we use on airplanes) might remove the light and shadows that may be contributing to her fears - I know I would be pretty terrified if only given a hint of what I couldn't discern. Seeing nothing may be more comforting - out of sight, out of mind?
Her meanness sounds more out of frustration for her struggles (and you just happen to be first in line!), but I agree it's hard not to take it to heart when sacrificing so much to help. Of course, your mother's definition of help is unlikely to match yours: she wants to not be old, not confused, not frail... yes, that would do nicely, thank you :-)

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I was wondering the same thing. Perhaps nothing would be better than shadows.

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score 2 · Answer 4

Try the Care Topics, click on top rhs of the screen, then on L for LBD. There are 8 articles and 160 questions that might give you a lot of information. If her hallucinations don’t seem like symptoms of LBD, you may be correct about ‘her brain creates images to compensate for vision loss’. I’m sorry, I’ve forgotten the name for this, but it is discussed at length in one of Oliver Sacks’ books, perhaps ‘the Eye of the Mind’.

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Thank you!

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score 1 · Answer 5

My mom has Lewy Body Dementia. She is in a nursing home now, but has never said or done mean things. None of her hallucinations have disturbed her so we don't try to talk her out of what she sees or believes.

We took her to a memory clinic for diagnosis. They went over her meds, had a psychiatrist do an evaluation, did a 3D MRI, and we spoke for quite a while to a geriatric doctor. All the regular neurologist had said was that she didn't have Parkinson's Disease while the Physical Therapist swore up and down that she did because of her gait and slight tremors.

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Thank you! I will look into that. The last thing we need is another wrong diagnosis for sure.

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Anyone have any experience with Lewy Body dementia? My aunt’s Dr. suspects it is what her issue is, but we can’t get a neurologist until July.

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