My mom had Lewy. Hallucinations & visual distortions were very much a part of Lewy for her, seems to do more intensely than with the other dementias (Alz., Temporal frontal). There might be things done to help with this. But just how feasible amidst Covid concerns is a whole other matter...... For my mom, she saw animals - cats & rabbits - and they were just there in a corner, not threatening but just over there and totally real in her mind. She didn’t try to feed them either. She mentioned it to me but not to others. What we did was change the lighting, putting up torch lights on timers so established clear start & end of the day and high shelves with timer battery candles so that there was no area really dark for shadows to become animals. It did help. She wouldn’t mess with torch lights but did for table lamps. Also got rid of deep shelves dark furniture & instead did light wood shallow shelves from ikea. It did cut way down on hallucinations.
is she at all doing the “Lewy Shuffle”, like she does not pick up her feet to walk but instead does a flat footed shuffle forward?
I’ll echo what PegAnn posted. For Lewy most of the usual psych/ behavior drugs are totally contraindicated and make matters much worse. Being seen by a gerontologist and a geri neurologist is pretty important for those with Lewy because of this. My mom was on Excelon patch & pill and for her they were quite good in early & mid stages. Aricept is a no for Lewy too. For latter phase, she switched to Remeron - it’s an old school drug and ok for Lewy. Sadly, end stage Lewy imo nothing really helps.
The upside of Lewy was that for us, they stay pretty competent & cognitive longer. They can do pretty well in those 3-5 minute type of conversations and ok on the clock drawing and 3 items mini mentals... but once beyond cursory conversation they are in another solar system for their reality. It can be scary as they appear totally ok on the surface. It’s another reason why a gerontologist is important. My mom was in IL & ok totally on her ADLs for a good while, could do fire drills, but would have a “lewy”episode of being detached from reality. Eventually moved from IL to NH as she was wandering IL hallways at nite. & yet while in NH still pretty good on ADLs and self feeding & activities. I did set up lighting on timers and candles on high shelves in the bathroom at the NH and staff was ok on this at both the NH she was in. Violence, not really, although she did reach over and pull glasses off another resident as they were “hers”.... turned out the glasses belonged to nether mom or the other lady. Happy hands are just part & parcel of NH life. Our experience was that Lewy runs longer in duration than the other dementias, it can be a 5-8 year slog, the hallucinations decreased as the disease goes on; she had TIAs every 3-5 months. Last 18 mos she was on hospice as well. Hospice was wonderful, I cannot be grateful enough that hospice was a MediCARE benefit she could utilize. Good luck on everything with your mom plus dealing with Covid-19 concerns.
No Dementia gets better. Will go into another stage where there may be no more visions but she will continue to decline as the brain literally dies. Ask about the meds, bit keep her in the NH. LB is one of the worst Dementia's. They can become violent, I think.
Hi, Dealing with Levy body dementia is rough. . Hopefully your Mom was seen by a good and compassionate neurologist. Speaking from my own experience with my husband, none of the meds he had previously been placed on did any good, and often made things worse. Finally he was referred to a really kind and supportive neurologist who said that the meds he had been on were not appropriate for Levy body dementia patients, Finally put on Depakote, and all other meds were discontinued. You might want to ask your mom’s neurologist about it. Meg
is she at all doing the “Lewy Shuffle”, like she does not pick up her feet to walk but instead does a flat footed shuffle forward?
I’ll echo what PegAnn posted. For Lewy most of the usual psych/ behavior drugs are totally contraindicated and make matters much worse. Being seen by a gerontologist and a geri neurologist is pretty important for those with Lewy because of this. My mom was on Excelon patch & pill and for her they were quite good in early & mid stages. Aricept is a no for Lewy too. For latter phase, she switched to Remeron - it’s an old school drug and ok for Lewy. Sadly, end stage Lewy imo nothing really helps.
The upside of Lewy was that for us, they stay pretty competent & cognitive longer. They can do pretty well in those 3-5 minute type of conversations and ok on the clock drawing and 3 items mini mentals... but once beyond cursory conversation they are in another solar system for their reality. It can be scary as they appear totally ok on the surface. It’s another reason why a gerontologist is important. My mom was in IL & ok totally on her ADLs for a good while, could do fire drills, but would have a “lewy”episode of being detached from reality. Eventually moved from IL to NH as she was wandering IL hallways at nite. & yet while in NH still pretty good on ADLs and self feeding & activities. I did set up lighting on timers and candles on high shelves in the bathroom at the NH and staff was ok on this at both the NH she was in. Violence, not really, although she did reach over and pull glasses off another resident as they were “hers”.... turned out the glasses belonged to nether mom or the other lady. Happy hands are just part & parcel of NH life. Our experience was that Lewy runs longer in duration than the other dementias, it can be a 5-8 year slog, the hallucinations decreased as the disease goes on; she had TIAs every 3-5 months. Last 18 mos she was on hospice as well. Hospice was wonderful, I cannot be grateful enough that hospice was a MediCARE benefit she could utilize. Good luck on everything with your mom plus dealing with Covid-19 concerns.
Dealing with Levy body dementia is rough. . Hopefully your Mom was seen by a good and compassionate neurologist.
Speaking from my own experience with my husband, none of the meds he had previously been placed on did any good, and often made things worse. Finally he was referred to a really kind and supportive neurologist who said that the meds he had been on were not appropriate for Levy body dementia patients, Finally put on Depakote, and all other
meds were discontinued. You might want to ask your mom’s
neurologist about it.
Meg