He sees people and animals. I feel so bad for him because he still is aware of things, but doesn't understand why he's seeing all these people and animals in our house. He was crying this morning because he knew what he was seeing did not make sense. Any ideas? We've been to the doctor and they have not prescribed anything. I'm not putting him on any anti-psychotic medications.
The only thing I'd add:
If your Dad is crying, and you don't know what to do in that very moment, give him a hug and let him know that regardless of what he sees, you are there with him and he is safe.
My mom was put on Exelon patch. It was good for keeping her more on task mentally for about 3 years. So she stayed mid-dementia stage longer; with scores in the 11's & 12's. Exelon for Lewy works but Aricpet for Lewy is more a total waste.
What testing has dad had to determine that it's Lewy? The clock drawing test for Lewy they usually can do correctly till the end stages, so that alone isn't enough.
Ancedotally I've found that those with lewy tend to have TIA's more often. Personally its my theory that a section of plaque breaks off and triggers the TIA on those with Lewy. For my mom, if she had severe forehead headache, she's more than not have a TIA within a couple of days. I'd say she had over a dz TIA's with 2 leading to hospital runs from her NH to the hospital for "observation".
You may want to Google the UK Lewy Body sites. In the US, most info is so geared to Alzheimers. Lewy is the 2nd most common dementia. There is oodles of info out there on Lewy. To me its more about finding what his issues are and planning around his specific needs. The animal hallucinations can be somewhat lessened by providing clear & even lighting at his home. Dark corners tend to create shadows which look like rabbits, cats, whatever. They should be non-threating so try to just go with it. I put torch style lamps on timers & flameless candles with timers on high shelves throughout mom's IL and it did make a difference.
Getting him sleeping through the nite will make managing all this easier. It may be that he will benefit from one of the old-school meds like Remeron to get him able to sleep better. His executive functioning will get smaller & smaller. If he cannot do his medication management then you need to either be there or hire home aides to make sure he takes his meds on schedule. For my mom, inability to do her medication management was a big reason to get her out of IL and into a NH. Get rid of any rugs or carpet that have texture as those too cause them to see things that aren't there. Ditto for big dark heavy furniture that create visual dark holes.
Also if he has the Lewy shuffle, those rugs and dense carpeting will cause him to trip, fall, loose his footing. If he has a bad fall, sadly expect him to rapidly go to the later stages of his dementia really fast. My mom went from being one of those active NH residents to being totally bedfast and on hospice for 18 mos after she fell & shattered a section of her hip. In many ways being Lewy enabled her to live a lot, lot, lot longer than had she been Alz. I'm not sure it was better as 18 mos on hospice was like seeing someone on the Bataan death march.
My mom had false beliefs but since they appear to still be totally good mentally, it can be a real problem as others tend to believe what they say. They seem totally lucid but really are out on their own solar system. Dad probably will fixate that 1 or 2 regular people in his life are doing things. Like for my mom, the mail carrier was stealing. It was only on retrospect in reviewing things after she moved out of her home & into IL that I & others realized that a lot of the things she said were happening were totally bogus. Even at IL, she went into elaborate stories with her nieces about staff using her apt for meetings when she went for meals or on field trips. Mom had her dentist and his staff totally on-board that the mailman was stealing her plants. My cousin actually confronted the activities gal about her coming into mom's apt without her permission, mom was just so totally believable. They instinctively know they are loosing their reality and need to have someone to blame for all this. So pause to think if what he says to you or others is really truly based on reality.
If you can, keep a regular journal of what he says. There will be patterns to how his mind works. Or what triggers an episode of false beliefs. It will help you and others to know when to be concerned and when to just go with his false beliefs.