Expert: Mary Gordon - 10/9/2008

Question
Mary,
   the med seroquel ended up with a trip to the ER. i ask them about the med. and they said it would take a week or more to start working . well mom was on it for 4 days and she became very mean and even started hitting every one.
the nurse called and told me the was taking mom to the ER because mom just fell out and they couldn't get her to wake up her blood pressure was up some not alot.when i got to the hospital all mom could do was moan and she was shaking.the dr.said mom was just putting on . i told them that was impossible for her . she is in stage 7 for god sake who do they think they are treating my mom like that. they treated her like because of her alzheimers she didn't count .when she finally did start talking some what she was crying and very scared.i held her and told her i would not leave her .they tried taking blood 4 times and could not get it after that about 30 min. later they wanted to try 1 more time i told them no. they did a mri and told me it was normal .how can that be .i just cant see it .to make a 7hr. story short we took her back to the home and told them she was not to have any more of that seroquel.can we stop any meds that we feel is not helping our mother? or is it their call?  we ask them to put mom on zolof but they said no what else can we do?
       
thank you so much for helping me .i trust your advise.
thanks sandy

Answer
The thing is Sandy, Seroquel is not approved for use in dementia patients - its an "off label" use. That said, it does seem to help some people with AD who are agitated. Some, but not all!!

Seroquel was designed for use to treat aggression in schizophrenics, but has been heavily prescribed for Alzheimer’s patients after other drugs were found to increase the risk of stroke and pulled off the market. Seroquel can and does seriously impact cognition in many people - in other words, it makes their dementia worse. Beginning users may feel extremely tired and 'out of it' for the first few days, sometimes longer. Obviously, if the user is a person who has dementia, its going to make them into a zomby if it makes them very tired and out of it!

It also can cause tardive dyskinesia, a condition characterized by uncontrollable muscle spasms and twitches in the face and body. This problem appears to be most common among older adults, especially women. Seroquel has also been known to have the exact opposite effect your mom's doctors are after - in other words, in some people, it makes them MORE agitated and angry rather than less.

Any ER doctor who would say a person in late stage AD is somehow capable of deliberately faking symptoms is both ignorant of AD and an insensitive clod. Being sneaky enough to purposefully fake symptoms requires the ability to plan out action and to know what the reaction to certain behaviors will be - all of which requires some very sophisticating reasoning and an intact brain.  

No, you do not have to allow them to keep her on seroquel. The truth about people with dementia who have aggression and agitation problems is that everyone is different and what works for one may not work for another. Her doctors have to be willing to try a range of things - including the front line caregivers trying to figure out what sets her off, and find ways to avoid those situations or manage them better (i.e. if they know she gets upset about bathing in the afternoon, they need to try it in the morning, or if they know being near certain people makes her mad, they need to keep her away from that person or situation). They also have to try various drugs if behavioral approaches won't work. No one medication is going to work for everyone. Some people are going to have terrible side effects from certain drugs that don't bother other people at all. They may have to try combinations of things to hit on something that works. They can't just say its seroquel and that's that, we won't try anything else. They also need to start with very low doses and gradually increase it, and see what happens. If the side effects are bothersome, or its not doing what they thought it would do, time to try something else, and yes, you do have the right to tell them enough is enough.

As a bare minimum, they may have started her on way to high a dose. Obviously this isn't working for any of you. How long are they planning to try this before they move onto Plan B? And what IS their plan B, plan C, plan D and plan E. They may have to go through the whole alphabet before they find the right thing, and they should be honest with you - and flexible enough to be willing to try different things.  

Mary G.