After being taken off everything, Dad started 5 mg Aricept about a week ago. It actually seems to be making things worse as far as sleeping all the time. I can't decide whether it's the Aricept or the disease. When he first started taking it about 4 years ago, we could see improvement in cognitive function. When it was discontinued a month or six weeks ago, I felt I saw a decline. Again, not sure if that was really it or the disease process. Has anyone elses LO started Aricept in the later stages of LBD and noticed increased sleepines? Or stopped it and definately been able to tie it with a decline in mental status? Thanks.

Julie -
Have you checked the side effects of Aricept to see if sleepiness is one of them?
Robin

Aricept doesn't reach a steady blood level until 15 days at a particular dose, so it's probably early to judge much. The reason they give 5 mg is to help people develop a tolerance - if tolerated, 10mg is linked to better results.

Personally, I'd be more inclined to blame disease process for the sleepiness. The stimulants, especially amphetamine, Ritalin and Provigil can be very helpful - not just with wakefulness, but with improved cognition and reduction of other symptoms including hallucinations, which would seem totally counterintuitive. Cal made *remarkable* improvement in the first day or two with Provigil and amphetamine. There's information at http://www.lewybodydementia.org/Boevelink.php around page 17.

Eric

Thanks for your advice, Eric! I feel much better about the sleepiness not being caused by the medication since it hasn't reached it's level yet. I'd forgotten about that since the first time! As hard as we try to keep him stimulated and awake during the day, he just sleeps so much. I think I will ask his doctor about the Provigil, etc.

Julie:

You might print that Continuum article I referenced and take it with you; while this is an off-label use of Provigil, it's pretty widely done. Not all doctors may see the logic of using something stimulating in a disease with a lowered hallucination risk, but Dr. Boeve explains the "why" and "how" pretty thoroughly.

My only caveat is that both of these drugs can cause a (temporary) reduction in appetite, and the amphetamine can modestly increase caloric burn, so make sure to watch for weight loss in the first two or three weeks. We just made sure Cal was eating and encouraged him to have an Ensure in the afternoon. We also found it was helpful to try a half-dose of each agent - turns out he needs a whole Provigil, but just 5 mg of the amphetamine.

Eric