Expert: Mary Gordon - 11/12/2011

Question
My soon to be 96 year old mother has lived with me for the past 2 years, has dementia, manageable at home no 25 mg at bedtime of Seroquel and Ativan 0.5 mg prn.  Fell in August and broke femur, had surgery pinning the bone, had severe delirium after surgery, went to nursing home for rehab, was tried on Haldol, and other things, finally settled on 50 of Seroquel and 1 mg of Ativan at bedtime, 25 of Seroquel in the morning and 0.5 of Ativan at noon, along with an Exelon patch.  She did fairly well with this, progressed through rehab and I was ready to bring her home.  Sought a consultation with an outside psychiatrist who managed the local geriatic psych unit at the hospital.  He thought she was stoned (head slumped over, not able to wake up) in the office and cut her Ativan completely, made her morning dose of Seroquel q6h prn.  After 4 days of this, and a UTI she flipped out and an ambulance was called sending her to the geriatric psych ward.  There she was given steadily increased doses of Seroquel, Shots of Geodon, shots of Haldol, and ended up on now 1000 mg of Depakote, 50 mg of Seroquel in the morning, 100 mg of Seroquel at bedtime and a prn order for 100 mg of Seroquel at 1:00 p.m.  She also is on Xanax at bedtime.  Very frightening experience.  She is manageable at the nursing home this way, but physically I feel is declining because of her level of sedation.  I want to bring her home to give her some peace and comfort but am afraid at this level of medication.  

My questions are - is it possible that Seroquel is not the right drug for her?  Seemed like the more they upped it, the more irritable she became.  Secondly, what is a safe level of Depakote?  I was told by the social worker at the nursing home that they would not be decreasing her medications as long as she is there because she has to remain calm.  If I bring her home how do I begin to cut back on these meds?

Answer
Susan,

Seroquel is a medication used to treat conditions such as bipolar disorder. It is not approved for behavioral problems related to dementia. Black-box warnings for elderly patients with a dementia-related psychosis indicate an increased risk of serious side effects, including pneumonia, heart attack, stroke and death. Geodon is the same. The U.S. Food and Drug Administration (FDA) has issued a special warning (a "black box warning") about the use of Geodon in elderly people with dementia. Elderly people with dementia who are treated with antipsychotics -- including Geodon -- are more likely to die (of various causes) than those who were not treated with those medications. Geodon is not approved to treat dementia or dementia-related psychosis, and caution should be used before using Geodon in elderly people with dementia. Same with Haldol.

Ativan is a benzodiazepine and is usually used in dementia patients only for short term - essentially to quickly calm someone who is extremely agitated and/or anxious. These drugs are not widely used in people with dementia because they can actually increase memory problems and confusion. They also  cause excessive sedation, unsteadiness and a tendency to fall. Xanax is in the same family so the same cautions apply.

Depakote can cause severe drowsyness, and is particularly a problem in the elderly.

You want my 2 cents?  I fully realize that your mother may be agitated at times and occasionally difficult to manage for busy staff but it seems to me what is going on is just this side of criminal. Essentially, they are using chemical restraints to zombify her. This is not appropriate in any way, and no way to manage her behavioral issues other than in the very short term.

She is 96 years old. A major problem with what they are doing is that in the elderly, these drugs tend to accumulate - they do not get metabolized and processed and cleared from the body at the same rate as they do in a younger person. They also will have more side effects.

The staff at this facility are clearly not expert at dealing with dementia patients and are taking a very lazy route. There should be no need for all this medication over the longer term. I could understand if she got agitated and they gave her a small dose of ativan to calm her down and then left it at that, but this array of medications on a continuous basis is chemical warfare on a frail and elderly lady.

I truly think she needs to be in a specialized dementia unit or at home with you, and gradually weaned off this stuff, as you can't stop these drugs suddenly. Dependencies do develop, so you would have to slowly back off these meds. Does your mother have a dementia specialist like a neurologist with a geriatric dementia specialty who could assist? If it were my mother, I'd want her off all this stuff gradually other than the Exelon, and give it a few months to see where she is at the end of that. Most behavioral issues can be managed with non-drug approaches. You might also want to try swapping the Exelon for Aricept and Namenda for her dementia itself.

Have they tried antidepressants? Quite often that helps more than anything else, because many of them have an anti-anxiety effect.  It is very, very common for people to have behavioral changes like agitation when they are ill - such as your mother's UTI.

Here is a pretty typical article http://www.huffingtonpost.com/2011/09/14/dementia-patients-antipsychotics-drugs-

and some information from the Alzheimer's Association
http://www.alz.org/professionals_and_researchers_behavioral_symptoms_pr.asp and from the AAFP

http://www.aafp.org/afp/2006/0215/p647.html

Hope this helps

Mary