Can anyone advise me on the best medicine for Lewy Body dementia?

I don't know about medication but there must be something that can control these people as behavior like this cannot and will not be tolerated. Nursing homes must know what to do with these people. Keep looking. YOU CANNOT AND SHOULD NOT BEAR THE BURDEN OF WHAT HE IS DOING - IT WILL DESTROY YOU. This is an emergency and he must be placed at once.....this cannot continue no matter why or how.

Is your husband taking donepezil? My father has LBD and was becoming extremely combative. The medications weren't helping until the doctor prescribed donepezil. The difference in his behavior was amazing. His behavior quickly changed and he is now no longer combative.

My mom did worse when any time meds were added..She actually went into a severe regressive period and lived in a locked Memory Care unit for 10 months. I requested we decrease all her meds in general, use old school meds, found a good MC Assisted Living facility and she has actually gotten better!! Incredibly better. Mom {87 yr old} says she needs a quiet room to go to, less conversation, peaceful surroundings at all times and a very fixed daily schedule. Any schedule changes and her Lewy acts up. Even a MD visit can throw her off. We stay on a schedule even for our visiting and days we take her out of her facility {Sundays church and my apartment for lunch} . The brain challenging activities at AL have helped greatly..Many days she is quite normal. She can play games, read , write letters and do her own showers again. I have read and moms doctor said all psych drugs are contraindicated in Lewy. I realize the above info may not be for your loved one but others with Lewy may find it helpful. So sorry for your struggles…

My mom has advanced dementia-not LBD-but we’ve had luck with CBD/THC. Was also put on Haldol by hospice to horrific results and drove to a state where we could get medical grade cannabis and saw an immediate result. Then we obtained a medical marijuana card and we’re getting it locally. Big difference. We’re pretty much doing trial and error on our own but the Hospice drugs were so bad we were willing to take a chance. Just my experience. Best of luck to you and your family as you navigate.

I don't know where you live but if you have access to medical cannabis it should be considered. My mother was very combative and scaring her home health care. I started mom on capsules after trying sublingual, gummies, etc. She now takes them 3 times a day. Care by Design is our favorite brand but there are others. She takes a 4:1 (cbd:thc) morning and afternoon and 1:1 at bedtime. We've had no violence or anger. She still sees things and has active fantasy world but giggles instead of hitting us.

Find yourself an old fashioned Dr and get him to prescribe for your husband. There are drugs a modern Doctor will not use because they have been superceded by drugs that are less sedating. But sometimes going back to older options can be more suitable for someone than the latest invention, but one needs an older Doctor for him/her to have these things on their radar.

Haldol might be part of hospice's toolkit but it is contraindicated for LBD, I knew a person with LBD who died after being prescribed it (this wasn't just a coincidence, the psychiatrist freely admitted that the drug was the cause of his death).

If he has medicare I would find another doctor for him. There should be other doctors around you that would look into his care start calling don't give up. Tell them that he got worse after this drug was prescribed that he wasn't like that before. It maybe another hospital visit to change meds but it might be worth it.

I’m now a fan of SEROQUEL (Quetiapine). Dad is headed for week two now and what a difference (sleeping at night and no more running us crazy about home during the day (trying to escape). Hospice would not prescribe Seroquel no matter how we asked. Hospice prescribed haldol (made his anxiety/not sleeping issues worse and he could not help himself the next day), Hospice prescribed lorazepam (made his anxiety/not sleeping issues worse and he could not help himself the next day). Hospice prescribed amitriptyline, (got too much sleep and could not help himself). Hospice prescribed good old trazadone (you would have thought we were in a zoo – he went even crazier on that one and almost ran us out of our own home).

Hospice helped us get dad admitted to the behavioral unit where he got over prescribed a bunch of meds for memory (didn't keep him on) plus 100mg of Seroquel. The 100mg was causing too much sleep which lead to him not being able to help himself and that would lead to not wanting to eat because he would have not been able to stay awake.

So my primary helped us fine-tune and told us 50mg of Seroquel (melatonin optional) only at night and added citalopram for the morning regimen. So far/so good. Hoping all works out once placed in a nursing home. I'm still wrestling with the fact that he will have to go back to a nursing home instead of his home.

Don't give up either! Hoping you and your husband can find some peace as well!!!

I agree with Helen. SEROQUEL helped my mom with her mid to late state dementia. It helped with her mood and sundowners. She only takes a small amount 25 mg at night and a huge improvement. Doctors don’t tell you this so you have to ask for it Good luck. You are an angel. Karen