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).
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.
The other tip I can offer is that if antipsychotics are used, and some Parkinsonism results but the drug is really too helpful to quit, add a little Cogentin, just 0.5 to 1.0 mg twice a day adn that will typically help quite a bit. Some places I go to do consultations, we are forever treating increased falls and sawllowing problems resulting from overuse of these meds without good side effect awareness. Some docs are just horrid side-effect deniers, and it gets to be ridiculous sometimes - I have heard colleagues deny that there could be problems when the patient is reporting the top three things listed in the PDR! I guess you can tell which of us have ever had to take meds ourselves... :-)
PS - if anyone has tips on how to tactfully and effectively request that no one change ANY medication without consulting you first (my mom is ridiculously side effect prone and most of the the things docs would normally want to try for her various conditions are "been there done that" and we need a T-shirt that says "Never Again" or "No higher dose please!" Docs also forget that if someone if not on the usual first line med for something, there might be a GOOD reason rather than "geez - wonder why the first doctor never even thought of that... but I'll just go ahead and start some right away!"
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