Expert: Cindy Keith, RN, BS, Certified Dementia Practitioner - 12/12/2011

Question
My mother is in late stage AD. In May (following death of my father) she went into a rapid decline. Lost swallowing, language, and ability to care for self. Had PEG tube inserted for nutrition and have her at home with 24hr family caregiver. Has regained some swallowing capabilities and has regained degree of physical strength through home health therapy. However she is in a constant state of restlessness that is now making it more unsafe since she moves in chair and bed trying to get up -- doesn't seem to comprehend that she is unable to walk and go. She's on Celexa but her physician is hesitant to prescribe antipsychotic due to elderly dementia patient warnings. Does allow 25mg Seroguel PRN -- but not consistent in effect--sometimes does nothing, other times puts her to sleep for hours. Do you have any suggestions for medication that might take the edge off the anxiety without completely doping her? Since she is homebound and not able to see her physician face-to-face, I would like to have some ideas before opening another discussion with doctor. Thank you for any help you might be able to provide, for as you know, it is difficult.

Answer
Hello Margaret:  I'm sorry to hear about your mother's decline.  I applaud you for being her advocate with her medications and her comfort.  I have several thoughts about your questions.  First of all, are you as certain as you can be that her restlessness isn't being caused by pain or discomfort?  If this is a rather sudden change for her, then you would want to be sure she doesn't have a urinary tract infection, isn't constipated/obstructed, or have something bothering her such as tooth decay or stomach pain.  There is absolutely no way you can help her understand she can no longer walk, so you need to find the reason she is restless and attend to it.  
I would suggest that she be switched from Celexa to Lexapro.  They are both made by Forest Pharm. but Celexa is older and not as potent or effective as Lexapro, and Lexapro is also FDA approved for anxiety disorder.  It has a low side effect profile, so it's a good choice.  It may even eliminate the need for the Seroquel.  You would have to give it at least 6 weeks in order to see how effective it will be. I agree with her doctor about not prescribing the antipsychotics since they're often not effective and can hasten death.  
You may also want to consider hospice care for her at this stage.  They can be a huge help with the caregiving, the family dynamics, and easing the transition from life to death for the elder.
I wish you luck in your quest to find comfort for your mother as she travels on this journey through dementia.  Cindy