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).

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If you read on line, seroquel is not recommended for dementia. However, I have tried everything, and seroquel is my last resort. I am a nurse and have been taking care of my father for almost 4 years. His vascular dementia, from 4 strokes, is getting so bad it tears my heart out. I almost hate to say it but the side effect, which can be death, is almost better than watching him suffer. I don't see the father i once knew. His beautiful blue eyes are filled with sadness. He can barely walk a few steps and is mostly in a chair or in bed. If i could see just a glimmer of happiness or hopefulness, it would be worth it. I'll keep you posted.
Helpful Answer (19)

I'm one of the few it seems who has had success with Seroquel, or rather the generic - Quetiapine. My grandmother, 90 years old has Vascular dementia. 9 months ago, I was being physically attacked on a daily basis, several times a day, by her. She hit, bit, kicked, threw her walker at me, tried hitting me with her cane constantly. Highly aggressive. Up all night screaming and cursing, having delusions, seeing people in her room. She finally had a psychotic episode and had to be put in the observation unit of the hospital for 3 days (where she punched a head nurse)

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.
Helpful Answer (12)

jgoldhammer, my heart goes out to you in this situation. I grieve thinking of my dad in the nursing home. While still at home, he placed a plastic bag over my 7 year old's head (during play), and constantly threatened to hit mom. He was wandering the neighborhood, and acting out innappropriately with neighborhood women and children. Had to get guardianship, and took him to ER. They sent him to a Geri Psych unit for stabilization on meds, then placed him in a nursing home. Zombie-like is better than dangerous. As his Alzheimer's has progressed, he has mellowed, and the dosages decreased. Angry, hostile aggression must be curbed. Frustration can exacerbate that. We didn't have a choice either, unless we had a 24 hour bouncer to watch his every move. Still, it is so grievous. I hate losing my dad to this horrible disease. They simply can't help themselves when they get like this. Fortunately, the stages change, and he's compliant, now. However, he's declining in his abilities. So, be kind to yourself. I understand. Sometimes the meds are a necessary evil. Finding the right one, and proper dosage is an art. Pray for wisdom for his Doctor. And brace yourself. It's a tough journey, isn't it?
Helpful Answer (11)

My mom was put on Seroquel for her negative combative behavior - she had a frontal lobe stroke and is aphasic - and she is classified with dementia - and it was a Godsent until she started to adjust to it - and so the doctor prescribed 25 in the am & pm - but she refuses to take the evening one - we have to crumble it in her food - and it helps. It is most likely like any meds - works for some - and not for others. My mother doesn't have any negative side effects - she is actually so much better with it!
Helpful Answer (7)

My mom is on Seroquel too. It helped her have an appetite when her weight was plummeting and it also helps control her aggresive behavior. Getting slapped by the hand that used to lovingly smooth your hair is traumatic. So this med keeps her calm (most) of the time and not scared or angry. She is not zombie like either. We use it because it works when all else has failed.
Helpful Answer (7)

Seroquel is an antipsychotic and all of these are likely to aggravate or cause Parkinsonism (aka "extrapyramidal side effects") and sometimes at suprisingly small doses. That said, there are times when a SMALL dose in an elderly person is worth the risk. These should generally NOT be first choice for true anxiety disorder - if SSRIs can't be used for that, or OCD or other symtpoms persist, buspirone is also betterthan antipsychotics more often than not. A real key for the elderly - and actually for a lot of us who are side-effect prone - is instead of cranking up the dose, use the lowest at least partially effective dose, increase slowly if at all, and if side effects kick in, try a lower dose even if it seems just about homeopathic. My dad had to take a little tiny dose of haldol to combat disinhibited behavior. The usual lowest starting dose of an SSRI given kind of routinely in an ICU setting gave him serotonin syndrome though. If he had been really dperssed, I would have asked them to cut the dose in half. Half the usual starting dose for an elderly person is often just the ticket and that may just be the dose to stay on.

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!"
Helpful Answer (6)

I agree with here4care and jo165fromTampa. The family and/or caregivers WHO ARE WITH THE PATIENT OFTEN know the patient best and are in the best position to carefully observe symptoms and drug reactions. I don't mean a brother-in-law who lives 1,000 miles away and does research on the internet. I mean the people who actually see the patient or live with him or her.
*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.
Helpful Answer (6)

I have been a in-home caregiver for 30 years..I have seen pretty much everything.There is out here..I was taking care of my patient..And best Friend...Who also had this dreaded disease.The VA was taking care of him at home along with Hospice ..He was given 6 months to live..Like they really know!!His family insisted that they stop all Phychotic Meds.At first they said this is what the Dr.ordered..His wife said I am his POA and I said NO!!!!!Needless to say the med's stopped..They put him on((( Reminyl ))That is for Alzhimers & Dementia...And 1mg, Ativan at night..The G-tube was removed in 4 months.He started Pt again.And was coming to the kitchen on with his walker..Oh he also started going to church again.I would push him around in his wheelchair and all the neighbors would just be in shock!All this happened with in 8 months.His VA Doctor and Hospice was shocked..I started with him on 6-21-09-..He loved me and I loved him and his entire family.We lost the fight on 9-12-12 due to complications of A gallbladder surgery ..Not to this awful disease..I think my point here is..Speak up you know your love ones better than anyone else..The old saying if it walks like a duck and talks like a duck..It's A Duck!!The nursing homes and hospitals do care..They are just under staffed.And loaded with paper work..It's the Doctor that need to be held accountable.And believe me..You have the right to say..Hey doc I don't think so..We are going to try it this way..Or I will be getting another Doctor..That simple..Really it is, I've seen it happen..And you must find A caregiver that cares.If dad is always sitting and you know he can walk..Tell who ever is caring for him..I want dad busy .If hes sitting he can sit in A wheelchair and be pushed to the mall or dinner..Or just to the hill to watch the Ducks swim..And count the new ones each year..I miss you Mr.Dillon and will see you on the other side.I hope this has helped..As I sit here with my Mother-in-law.That I took out of the nursing home with Alzheimers and Dementia..That was so dehydrated that she had scabs on her tongue..And was in the fetal position..She is sitting up having A little coffee..And oatmeal..And at night is driving me crazy with the sun downers..Until I give her her Ativan 0.25mg..And refused to give the Seroquel that they increased to 200mg at bed time..Because she was stiff as A board..And fighting me hitting, spitting, cursing....And was out of control..I will not give it to her..And as long as I say NO they can't make me...I wish you all the best and will Pray for A great outcome..
Helpful Answer (5)

My mom has been on Seroquel for almost two years, she has been diagnosed with Alzheimer's type dementia. It has helped her tremendously, the sundowning had become very difficult for her, we needed to do something. She started out taking 12.5 mg each day about 4 pm. She is now up to 75 mg a day, still about 4. It has been gradually increased as the effectiveness of it diminishes. Her doctor said that some of his patients are up to 400 mg a day when behavior is an issue throughout the day. When mom started this medication it was a blessing, and it still is, off label or not. She also has a prescription for .25 mg Xanax which is only used on occasion which maybe happens once every couple of months.
Helpful Answer (4)

Seroquel had definite cognitive decline effects on my mother. It was given to help
with sleep but within three weeks she could not follow directions nor answer in
complete sentences..As HCS , I directed that they take her off after reading the studies about the cognitive decline in the elderly on the seroquel. I would not ever
use this one again. Wiithin several days, she was speaking to us in sentences and following simple directions, walking better. She needs to keep the good brain cells that she has and not destroy them. The family and caretakers know them better than the doctors do. Best Wishes with your loved ones
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