What is the best medicine for someone who has Lewy Body Dementia?

The answer is very unique to each patient. Have you thought about clinicaltrials.gov or asked the MD about cutting edge treatments at a nearby University Hospital? Many diseases need treatment tailored to the individual patient, there is often no one size fits all cure.

My father has Lewy body dementia we have been to several neurologists and finally we found the best neurologist ever he changed my fathers medication and he is doing alot better he was really in bad shape to the point my mother could no longer handle it he was not sleeping at night he would stay awake for days seeing people that want there it was just so heart breaking to watch this now with the medicine change he is much better and i am so thankful..The key is the medicine pts like this cant take a lot of different meds it will absolutely make them worse

I've been caring for my Grandma for 2 years. She has vascular dementia, when we had her on Risperdal she was hallucinating and was convinced I was poisoning her. We switched and had her on Buspirone. With that med she ended up having a psychotic episode and was in hospital on observation for 3 days where she punched a nurse. I was being hit, kicked, bitten, and verbally attacked DAILY. Worse during her sun-downing times which would start at 3:30 almost on the dot, daily, and go far beyond her being in bed. Her gerontologist was practically useless. And so I, as always, began doing some hard research and came to the conclusion I believed she also had Lewy Bodies w/dementia.

She was having hallucinations and delusions on a daily basis. It got to the point I couldn't go into her room because she was convinced I was trying to kill her. That's when we had to put her in the observation unit in the hospital for 3 days. Finding a psychologist who took the time to listen to me and listen to my concerns and research is what made the biggest difference for us.

I started noticing she would lock her fingers pointing towards the TV, she would tell us the FBI was communicating with her through her oxygen tube, she "saw" neighbors across the street looking through the windows (they weren't), she "heard" people in the basement and told me constantly she heard music and people having a party downstairs (we don't have a basement or a downstairs). She also believed I would stand at the end of her bed and pull constantly on her oxygen hose.

I took her to a mental health expert (psychologist specializing in dementia) and she came to the same conclusion. We took her off the Buspirone and put her on Seroquel. I saw a change literally in 48 hours! She has been on that med for almost 8 months now and I would call it a lifesaver at this point. I have only been slapped once or twice, and she has what we call "mini meltdowns" rarely now, and usually while she's getting ready for bed. Her "tantrums" used to last up to 6 hours and now they tend to max at 15 minutes. Our house is now filled more with laughter than screaming and cursing! :)

My opinion: Do your research. If one med doesn't seem to be working, consider trying a different one. I learned that people with Lewy's tend to be highly sensitive to certain anti-psychotic meds and they can actually make their condition worse rather than calming them. That's what happened with my Grandma.

You are their biggest advocate! I had to make doctors listen to me when they didn't want to. But I can be pretty pushy sometimes ;)

Also, at night, she takes Melatonin along with her other meds. And, since she's been on the Seroquel she usually will sleep through the night, where before, she was waking up, sometimes, up to 6 times a night!

I found a med that decreases the sounds he was hearing.........Zanex has worked wonders so far to control his aggitation,and auditory hallucinations. ;-) I should have been a doctor.............

My dad had LBD and I finally had to put him into a Geriatric Psych Hospital to have meds adjusted. He had horrible behaviour plus all the paranoia, seeing things, etc. My dad was on some powerful drugs. I remember one that really made a difference in his behaviour was Depakote. Luckily my dad never suspected the doctors of wrongdoing. He always begged to go to the doctor. Hopefully you will be able to get your dad back to a doctor that will be of help to him. I hope so.

Mimara, I will certainly echo your claim that LBD is a horrible disease! All dementias are. And you are right that finding the right drug combination is not a one-size-fits-all proposition. Experimentation by a very patient and knowledgeable physician or psychiatrist is needed.

Some Parkinson meds make some symptoms worse for some people with LBD. Some dementia meds make some mobility problems (Parkinsonisms) worse for some people with LBD. But taking Parkinson's meds does not cause LBD. Deposits of alpha-synuclein protein in the brain (named after the researcher who first discovered the deposits in brains of Parkinson's patients) are responsible for both Parkinson's and Lewy Body Dementia symptoms. I'm not trying to be overly picky, but I don't want someone with Parkinson's Disease to think they shouldn't try medicines because they might cause dementia. No, but if the dementia is already there some symptoms can become worse, in which case reducing the medicine dose is one option. I've known caregivers who have had to decide which symptoms were worse and balance the treatments accordingly.

Fortunately for most of the 9.5 years my husband had LBD we didn't have to make those tough choices and drugs for both the Parkinson symptoms and the dementia seemed to be effective without interfering with each other.

As you say, Mimara, each case is different. Treatments are often more effective for this type of dementia than for some others (no cure though) that it is worthwhile seeking a doctor who is very experienced in this particular disease.

This is a loaded question. Sometimes the meds taken for Parkinson's Disease are responsible for the LBD. Each patient suffering from this malady, does not necessarily experience the same cause and effect. Read everything you can about the disease, the meds prescribed, their side effects, and discuss these issues with your father's physician and his psychiatrist. It is a trial and error process which you have to attend to diligently. LBD is a horrible disease.

visit the lewy body dementia association website