My 86 year old mom was diag with LBD 3 years ago. She has definite delusions and hallucinations that cause her panic and fear. When staying at her son’s (my brother) for 2 months they disappeared. Back home, they’ve reappeared. Can they just come and go like that with LBD?

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My 94 year old dad's LBD moods change depending on the level of anxiety he's experiencing. When he lived in his house, it was really bad.. Medication adjustments usually help if the anxiety continues for a period of time. He was in AL at the start of covid and then when everyone was confined to their room, he started slipping back and ended up in skilled nursing for many months. He is no longer mobile but confined to a wheelchair. I moved him to memory care in February. Things were a bit rocky at first and I have limited my visits to once every few weeks but yesterday he was the best yet. He was really like his old self, grumpy as ever and complaining just like he used to, with a little bit of joking in there too. Have not seen that in a long time. They have been able to deal with his dementia behaviors better than skilled nursing and he had none of that in ALF. He gets a written list everyday of his schedule. He made a point to tell me he is the only one who gets that list and showed it to me several times. The give him plenty of time in advance to let him know when it's time for his bath, breakfast, etc. His anxiety level is the best I've seen in a long time since someone has taken the time to deal with the dementia behaviors in a proper manner.
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AlvaDeer Oct 2021
This was also my experience with my brother and his diagnosis of probably early Lewy's Dementia. He was so much better when there was no anxiety component, once I took over his bills and such, once he was in an assisted living, had nothing to worry about he improved and had many fewer episodes of hallucinations. They came more frequently when out to eat, or when he was anxious. Lewy's is one of the few dementias that can go up and down and up and down, not on a continuous downward projectary.
There could be some trigger from floor coverings and/or window furnishings - squiggly patterns can look like snakes, furniture can appear as strange people/animals.
Hard to detect, but look for any clues from gesturing or just proximity where these events usually occur.
While I am driving with my dad, he often sees "buildings" that don't exist (the rapid change of scenery, or play of light perhaps?). Fortunately, these aren't terrifying but it would feel disconcerting nonetheless.
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My brother's LBD hallucinations went away completely when he moved to ALF. I took over as his POA and his Trustee of Trust, handled all his paperwork, taxes, bills, and etc. He said the relief of not having to worry about anything, groceries, bills and etc changed his sleep patterns at once, and helped his hallucinations enormously. If you look up a graft of how dementias work, Alzheimers and some others move downward inexorably whether in stairstep or slope, while Lewy's is up and down and all over the place. Can improve a while and then get worse. So I would say from personal experience that Lewy's is greatly affected by anxiety. The ALF agreed and said they see improvement often when people are relieved of things they fear they can no longer handled. One of the loveliest of the Social Workers there said she teases her hubby that ALF is her dream life.
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Elliemae7of9 May 2021
Thank you so much for your insight. It was really puzzling to us, but what you said about the anxiety triggering worse symptoms makes such sense. Oh how we wish she would agree to AL or a nursing home! We know we will have to do it against her will someday but don’t feel she’s quite there yet.
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