Expert: Mary Gordon - 10/9/2009

Question
My mother has LBD and is quite agitated when I call her. I don't know how to calm her.  How has Xanax been tolerated in LBD patients?

Answer
Hi Lori, although they can't use things like conventional neuroleptics (the antipsychotics like haloperidol), you CAN try other things if you have a doctor who is knowledgeable and willing to work with your family. I went straight to the Lewy Body Dementia Association page to see if they had any thoughts.  

There ARE some newer atypical neuroleptics antipsychotics that could be tried like quetiapine, or even clozapine with careful monitoring. These are mentioned on a couple of the Lewy Body pages such as http://www.nottingham.ac.uk/pathology/lewy/lewyinfo.html and http://www.lewybodydementia.org/

You could also ask to try something like clonazepam which is an an anti-anxiety medication - and specifically mentioned on the LBDA page. Sometimes antidepressants can have a good anti-anxiety effect as well, like bupropione (Wellbutrin).

I've heard of xanax being used occasionally but any of the benzodiazepines are associated with falls.

The thing is, no matter what, your mother is a unique individual, and doubtless has her own set of health issues other than the Lewy Body.  All you can do is find a good doctor who understand Lewy Body and Parkinson's and knows to steer clear of the known problem medications. And then between you and her doctors, you have to be willing to try various other things out. No one medication is going to work for everyone - it's all trial and error - and all medications come with a "price tag" in terms of side effects (and you just never know how severe or light they will be). The trick is to find a medication that does what you need it to do at the lowest possible dose, with the fewest and least objectionable side effects.

Do you happen to know if there is any pattern to her agitation? Does it happen at a particular time of the day? Is it set off by certain tasks or activities? Just thinking out loud, because sometimes there are things a sensitive caregiver can do to ward off the distress if they can figure out what brings it on, and moderates the schedule or alters the approach. Is it phone use itself that upsets her? Does any kind of reassurance help?
Are there alternatives like speaker phones or video links that could be tried (I don't know her living arrangements).

I know how sad it is to see her distressed and not be sure how to make her feel better. It is worth seeing her specialist if she has one, and talk to them about the agitation. It can't be pleasant for your mom to be upset, and I know you want her to be as serene and content as possible, and have the best possible quality of life. See if the doctor can come up with some ideas, and be patient - you might have to try a couple and watch closely.

Mary G.