For those caring for ALS with Lewy Body Dementia, can you say on average, how many hallucinations are they having in a month?

Does your dad have a neurologist? My husband was diagnosed with likely LBD and his neurologist always asked in detail about his hallucinations, which were not frightening or disturbing to him and no antipsychotic medication was prescribed. He did have nightmares for years which he started acting out, a common early symptom.

I would definitely speak again to his doctor and preferably a neurologist since his hallucinations are distressing to him. The only time my husband had frightening hallucinations/delusions was a few times when he had UTIs, mostly in the night, so that might be worth asking about also.

For my brother his were sometimes brought on by stress, such as shopping, eating out in a restaurant. Sometimes by patterns (wavy intricate patterns in a carpeting or marbling on walls). More they hit at night in elaborate and intricate screnarios of garden or pool party, immigrant woman huddling in corner, etc. Some were story like and some involved frightening almost monster-like images.

He got many fewer when he went into ALF care. MANY fewer. His handwriting also improved and he could once again write letters. I was told some early cases do improve when someone ELSE takes over anything like rental payments, bills, POA, etc. There is less stress and anxiety and fewer hallucinations.

I think each case is so individual. My brother died of sepsis before his Lewy's could progress appreciably. Would have been as he wanted. So I cannot know where it would have gone.