My mom lives in an assisted living facility and has been exhibiting angry/confrontational behavior with residents. The facility suggested we have her doctor prescribe an anti-anxiety drug. The doctor prescribed seroquel, an anti-psychotic. There is disagreement between my siblings whether this is a dangerous drug or not that dementia patients should not be taking (as written on the internet).
When you start with a very low dose, that is typically to make sure the body doesn't have a bad reaction from it. Often there is no expectation that the low dose will solve the problem. That's why I'd see it through until the dose is where the doctor wants it to be.
But I also don't think someone should stay on a drug indefinitely when it clearly isn't doing any good. Give it a little more time, but not forever!
I agree about finding out what was causing the behavior. Today is the first time I ever realized it!!!
My mother in law was chugging down her soda (1/3rd bottle) so fast just because she wanted a new bottle (20 oz). It got so bad that we took her off of soda and gave her flavored waters.
Well 2 months later she decided to grab my 2 liter of Pepsi out of the fridge and drink straight out of the bottle sneaking. Then we started noticing her grabbing our cups and sneaking a sip when she thought we weren't paying attention.
So today I thought to myself, she must be craving soda! I was at the store and thought maybe a 12 pack of caffeine free soda like Sprite might not be bad. So I bought it for her.
I brought her in the kitchen and said lets make a deal, don't drink our drinks or out of the 2 liter anymore and I will give you 1 Sprite a day. She was thrilled like a little kid who just got her best birthday present.
I never tried to take things away but she was being OCD about her soda in the past and taking it to such an extreme that it wasn't healthy for her. Just like when she smoked cigarettes and had 3 burning in her hands at the same time lol.
Thank you
Seroquil can be very effective for individual patients or it can have nasty side effects so once again it is trial and error
and published by the American Academy of Neurology (AAN). It is also published on the LBD Association website. http://www337.pair.com/lbda2007/sites/default/files/dlb-boevecontinuum04.pdf
Dr. Boeve, a behavioral neurologist, is an internationally respected expert on Lewy Body Dementia.
You will note that Quetiapine (Seroquel) is on his list of drugs that can be tried for various symptoms and is discussed several times throughout the paper. There is a risk of side effects. From my Lewy Body caregiver support group I know of several people for whom Seroquel was very effective and also several who tried it without success, including some for whom it made the symptoms worse. In all cases the prescriptions came from specialists well versed in LBD. It is NOT like haldol, a drug that should never be tried in LBD. If side effects occur with Seroquel they are not irreversible.
Any drug given for symptoms of LBD should be monitored closely by a knowledgeable physician. Seroquel was the second drug we tried (after Aricept) and it literally allowed me to keep my husband home with me, for his 9.5 year journey.
Sparrow, there are 3 possible causes for the sudden worsening of symptoms: 1) a reaction to a drug, 2) an illness (such as a uti) and 3) the natural progression of the disease. The good news is that if the cause is #1 or #2, it is correctable, and the patient will return to baseline when the drug is stopped or the illness is cleared up. This kind of change in symptoms should be reported to the treating physician, whether the change coincides with a change in medications or not. I sincerely hope that your father turns out to have a uti or that he is one of those for whom Seroquel is not appropriate. That can be fixed. Good luck!
After absolutely no help from her gerontologist who is a "dementia specialist" (insert eye roll and huge laugh here), I finally found a mental health specialist who specializes in dementia. I am a HUGE researcher, I look everything up, read everything I can get my hands on, talk and question everyone. I finally came to the conclusion that not only does she have Vascular dementia, but she also has Lewy body. After discussing her symptoms and moods, the psychologist agreed with me and took her off Trazodone and put her on Seroquel. First thing I saw was that warning about if the patient has dementia it's not recommended to use this drug. I called the psychologist back and discussed it with her. We decided to try it on a low dose (she's on 25 mg). Honestly, the change in her has been amazing. We learned that with her having two forms of dementia, with the second being Lewy's, that there are a lot of anti-psychotic and mood calming drugs that react in the opposite way and the person can become more aggressive. So with Trazadone and Risperidone (both drugs we tried with her) she was doing just that. Highly aggressive.
Within 48 hours of her being put on the Seroquel, I saw a change in her. She has gone from a person I could barely be in the same room with because of the danger of being hurt, to sitting and having conversations, playing cards, taking walks, and laughing....SO much laughing...and so much smiling, with. Right now, this medication has given us a chance to be not just care-giver/care-receiver, but granddaughter/grandmother. ♥
I consider this drug to be a saving grace for her and me, at least right now. She and I are able to interact now in ways we couldn't 9 months ago. I don't know what will happen tomorrow and I'm not saying there still aren't episodes. She still will go off on me, still will be aggressive, will still curse and spend hours screaming at me from her bed believing I am in there doing things to keep her awake. But it is nowhere near the level of anger/aggression it was months ago. And, because she is on a low dose, if I feel the need to (and I have), I can give her additional Seroquel (even 1/4 of a pill will help calm her).
The one thing I can say is your dementia care receiver is not my care receiver. What might work or not work for my grandmother, may or may not work for yours. Don't automatically assume it won't work based on what you've heard, read or been told and don't do the opposite and assume it will. What I've learned with my grandmother (and I've only been doing this for 2 years) is research and ask questions over and over and over if need be. You are their advocate, you are the one who works to get what they need to help them live the best life they can with this crappy disease.
My ten-cents :) Good luck and feel free to email me and ask anything you might want to know and I can share my experience with you.
*First, have a competent doctor who knows the disease. Usually this is a specialist.
* Then if the doctor wants to start or discontinue a drug, go along with it. Ask what you should be looking for. What will happen if the drug (or stopping the drug) is successful? How soon should the improvement appear? What side effects might you see? Do these go away over time? How long?
* Observe the results of the drug change carefully. Sometimes, of course, there are changes in the patient that have nothing to do with the drug -- that is the nature of dementia. But report all changes, good and bad, to the doctor.
* As you can tell from all the posts in this thread, when it comes to treating the symptoms of dementia, one size does NOT fit all! Seroquel was an absolute godsend for us. It literally allowed us to continue at home. And it was awful for jo165fromTampa's loved one.
* Don't be afraid to try treatments, especially if you have a doctor you have confidence in. And don't be afraid to make decisions based on your own observations.
Someday all the research that is underway will give us more options for treatments, contribute to early diagnosis, and even give us some tools for prevention. For now, we need to do the best we can with what is available and that can be a very trial-and-trial-again process. It is good to hear of other people's experience with drugs like Seroquel. Each of our loved ones is unique and each of us caregivers has a special opportunity to participate in custom-fitting the treatment.