Seroquel drug for dementia person's angry behavior in an assisted living facility?

Seroquel has worked well for my husband with dementia. Helped with his behavior so I can continue to care for him. Granted he still has issues but not as dangerous.

I agree with everyone saying NOT to take the antipsychotics. I am not mentally ill but I was forced to be on these antipsychotics for months while they injected them into me.

They cause permanent and irreversible brain damage. Other drugs can be bad as well, but the antipsychotics are on another level. They can't do any good, they can only sedate people for a while. If you care about your parents at all please do not even consider getting her to take these things. Due to the trusting nature of the internet along with aggressive marketing of these drugs it's highly possible there are shills strongly advocating their use in forums like this.

Glad to see this topic. Good advice to run, not walk, from Seroquel. Mom (95) was put in the Behavior (psych) Unit of her hospital after a 7 day stay in the regular section hospital when her behavior had gotten totally out of control. On the 8th day there was finally a diagnosis of what we had already been sure was another UTI (finally pseudomonas was identified in her culture).

Her behavior had become bizarre in the hospital -hallucinations, paranoia, aggressiveness- but we had discussed with the BU personnel that it was absolutely not her usual behavior and we were certain it was a UTI -which as I said, by the next day finally, was determined. Another day lapsed before they finally starting her on an antibiotic to get rid of the UTI. After several days in the Behavior Unit after the anitibiotic was started she was still acting so very odd when we expected substantial improvement. So I finally asked if she was being given other meds in addition to the antibiotic. She was still hallucinating, angry and very zombie like.

I was frankly shocked to find the psych Dr in the behaviorial unit had ordered Haldol (more than once) injections and had started her immediately on several anitspychotics including Seroquel! I had expected them to give her some sedatives, but was furious to find what they had been doing. I was even more angry that we were not informed about meds that are not even recommended for the elderly. Seroquel specifically warns that it should not be used for the elderly. Its for schizophrenia and other serious mental disorders. I requested the Dr wean her off the psych meds immediately which she grudgingly finally did and then they basically kicked mom out of the Behavior Unit. When I asked to be advised of what they were prescribing the psych Dr refused -said she couldn't work that way. I am persona non grata now to the Behavior Unit -fine with me.

Mom did recover from that UTI and did stop the really troubling side effects of the psych meds (hallucinations, etc.), but did not fully recover mentally from her trauma in the Behavior Unit in June of this year (2012). She has had 5 UTI's so far this year (end of April to September) and has rapidly declined into horrible dementia since that June episode. I blame the UTI's, but also think the psych meds were a major contributing factor. Be careful and insist on knowing what the Dr's are prescribing. Then look them up yourself to make sure what they are.

Frankly I would like Mom's GP to try her on Xanax or Ativan (longer working form of Xanax) for her anxiety. Both her younger sister and older brother (in another State) are on low doses for their anxiety and it seems to be helping them with no ill effects, but mom's GP is trying other things first.... God, dementia is the PITS!!!!!

I don't think all antipsychotics are all bad for everyone, but side effects are a huge issue. And Seroquel does not work for treating UTIs (or MIs, or any other causes of delirium)! Addressing the behavior and not its cause is a mindless error and I think it still happens way too often. I once had to insist on my mom going to a regular medical ER instead of a behavior uint - and that's where they found she'd had a second MI.

I just had my mother taken off of Serquel after her speech and cognition had
declined suddenly while being on this med for only a couple of weeks.
Read the 2005 study which addresses the elderly with demetia on this medicine.
It is filed with the National Institutes of Health and addresses cognition decline and
aggitation. The generic name is used in the literature and is Quentiapine.
Mom had been put on this for sleep aide and aggitation at night . Within 3-4 days
of coming off of Seroquel
we saw a definite improvement in responses, talking in sentences again, and overall
understanding/ following directions. She is taking Celexa-antidepressant for the demetia(diagnosed for 5 years)/ Altz. along with low dose of Xanaz for anxiety.
Mom has also been on a low dose (she doesn't tolerate much of meds.) of
Aricept 5 mg for the last 4+ years.
We have to watch all the symptoms very closely. You know your parents better
than anyone, so listen to your head and heart and READ, and READ about these
medicines.

I used to just kind of hate antipsychotics too because so many people have such bad effects, but have been forced to acknowledge that for some people they are absolutely necessary anyways. Gratned, that's rare overall, compared to the number of people who GET them, and sometimes for non-compelling reasons, but its sure not zero. If there are no structural brain abnormalities, the likelihood of durg-induced parkinsonism is much lower, but you can still have dystonias and insulin resistance, etc. Here in Arkansas, Medicaid is now requiring regular fasting blood sugars or HgbA1cs and lipids for even the kids getting minidose for autism and sensory defensiveness issues, which may be overkill, but I suppose gives people more respect for their side effect potential. One of my most favorite patients ever absoutely has to have some just so daily life is anywhere near manageable, so all I can do is add enough Cogentin (benztropine) to counteract the motor issues...Jo165 is absolutely right, you have to just watch like a hawk and see what works for any individual. I once had a patient look like they were getting an MS relapse on Celexa, but for most people its fine if they need it for anxiety or depression. Sometimes staying on very low doses if key, but a lot of the psych folks have been taught to do the opposite.

Risperadol is an anti-psychotic that has been used successfully for dementia. It is an older, first-line med; Seroquel is not. Everything I have read on Seroquel states that it is NOT for dementia and it is NOT for elderly patients. It was the point I was making above about being so upset at the Psych doctor for putting my 95 y/o mother on it without my knowledge. The Dr was treating her UTI symptom behavior with it, as though it was a psychosis -behavior that the antibiotic would clear by itself! It was outrageous! The Seroquel side effects of hallucinations, derlum, and more were continuing in mom well after the antibiotic should have cleared up her behavior. It was why I finally pinned them down to find out what else they had her on. Rude awakening -antibiotic yes, but also Seroquel, Effexor and several others. It's no wonder she was a walking zombie and still delirious. I'm still angry about that experience with that Psych doctor in that Behavioral Unit.

WE have had very similar experiences . Mom's situation all started with a raging UTI.Even being Mom's Health Care Surrogate,
a neurologist who had talked to me in her hospital room went out and prescribed
four different mental health drugs- all new :geodon, ativan, depakote, and namenda (a listed allergy for Mom) at the same time taking her off of her celexa(2 yers on ) and
aricept(4 years on) cold turkey and NEVER TOLD ME A WORD as I sat in Mom's
room not 12 feet from the nursing station. I was trusting that I would be told what I
should know. Do not ever assume that. I have learned my lesson. I was asking
questions from day one, but learned to daily (or at least everyother day) get a PRINTED med. list and go over it with a pharmacist. They know a lot more about the interactions and side effects.The Seroquel was the last of 12 mental health meds
that Mom was given in 18 days, and Mom was a chemistry experiment gone bad.
Her situation got to the point the cardiologist came in due to high heart rate and
had to assess the heart. Gave a med for lowering heart rate to counter what
were the side effects of some of the behavioral meds. We almost lost her one day
because the heart rate lowering med worked too good, and she got close to
flat lining. Mom doesn't have a heart problem, she was having a med problem.
Anyway, the best thing I started doing was consulting with two of my family
members who are pharmacists. If you have a local pharm. that you know, they
will give you information that can assist you . Every new med needs to be reviewed
by a good pharm Dr. or experienced pharm. The hospital pharmacy was not even
catching Mom's med. allergy list and gave her two medicines listed on the list!. What a nightmare. I can identify with your situation. We have changed hospitals for future visits.
Seroquel was helpful for a short time to get agitation symptoms quieted , so Mom
could sleep. We are now on the third antibiotic for the same UTI ,now back on
the original Aricept , Xanax,and Celexa and stopped the Seroquel after consulting pharma-cist , reading research and med. notes on Side effects. It has taken my
research and knowledge of Mom working with her gen. doctor to get her back.
Oh, and the neurologist, I had to fire him the next week. Too many drugs and no
communication.

One of the leading researchers on Dementia with Lewy Bodies is Bradley Boeve,
Chair, Behavioral Neurology, Mayo Clinic. One of his widely used publications includes a four-page table of symptoms and the drugs that are suitable for them, in this disease. Quetiapine (Seroquel) appears on the list twice, for two different symptoms. In neither case is it listed first (as first choice) but it is one of many tools for fighting the symptoms of this dreadful disease.

So while in general Seroquel may not be a good choice for older persons with dementia and while it is apparently not very effective in Alzhiemer patients, that does not mean it should never be used in particular situations with a known diagnosis that responds to it. It has been effective for my husband (Dementia with Lewy Bodies) for 9 years.

To prescribe Seroquel (or any anti-spychotic) for symptoms caused by a UTI is ludicrous.

If my mom with dementia/AD wasn't on Seroquel (lowest dose 2xday), she'd still be kicking the staff, spitting out most meds, and throwing her food! She had a terrible reaction to Ativan, and anti-depressants do exactly the opposite. She's never had a UTI, and they plan on cutting back the Seroquel IF she continues to be more mellow. Depakote has been mentioned, and I hope it will level her moods out a bit more...although she may save the worst "grouchies" for our visits! ;-)

Finally got my husband back on his depakote. Seems to help along with the seroquel.

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..

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

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.

My husband at 57 yrs. old has Frontotemporal Dementia and was prescribed Seroquel and I think that negatively changed his behavior and made him more restless. I am going to have him weaned off it and chart how he does and try to work on soe Validation Methods first and look at the environment, is he in pain, is he constipated or having trouble urinating, loud noises, etc. for two weeks and than see how he does without the medication. Please read the book, Dementia Without Drugs by G. Allen Power. This is my Dementia Bible and Dr. Power called me himself to lend support. He is a mento for the Eden Approach that they have tried in nursing homes. The are using it in some nursing homes in Rochester, NY near where I live. When my husband is ready for a nursing home, I want him to go to one of these. No dementia units, so no one is segregated. They even memorialize residents who have died together. Let's support one another as our loved ones need us to love them through there dementia . Ann Marie

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!

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.

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.

My 2 cents is that though Seroquel can be a bad drug, and I once saved a patient's life by getting them off of it (patient actually had gotten cataracts as well as physical debility as side effects) there is no drug on the market that is all bad for everyone, or else it wouldn't still be on the market. Now with any antipsychotic use for someone with Lewy Body, there is enhanced risk of motor side effects, mainly durg-induced (or aggravated) Parkinsonism. If it is critical to continue the drug, as it well may be for cases of psychosis and violent behavior, adding another drug called Cogentin (benztropine) in smallish doses of half a mg or a mg a couple or three times a day can combat that. Not everyone will tolerate this either, it is a bit anticholinergic and as with all things YMMV and talk with your own physician(s) who are seeing first hand and should have more of the individual relevant facts.

Another one cent or so, since I can't sleep tonight...The lower doses mentined are also usually a very good idea. And staying on the lowest dose that works instead of pushing it as a psychiatrist might want to do with a younger person is also a very good idea.

My father started on Seroquel about a month ago. He has moderate to severe LBD. Before taking the Seroquel he was withdrawn with some hallucinations, but now he has full blown hallucinations all day and most of the night time. He is much slower and his face just sags. He never speaks of anything that makes sense and mutters his words. He has had this diagnosis for about 5 or 6 years now and he has NEVER been this bad, then he took a nose dive when he started the Seroquel. We are so afraid to keep changing the meds around but this just does not seem right at all.

Seroquel is a bad choice for many people - though not all - and the drugs in this class are EXCEPTIONALLY and notoriously bad for Lewy Body. Sparrow, what you are describing is worsening of the symptoms it was given for plus drug-induced parkinsonism or exacerbation of parkinsonism. Ask about Cogentin, Sinemet, or Artane and getting weaned off the antipsychotic. This has clearly, and not unexpectedly, made him worse off than he was before.

Is it safe to give a Dementia patient Seroquel only as a PRN?

Any of these drugs given to the elderly are more likely to have a greater effect that on some one younger plus they can become cumulative as the kidney and liver are older and function less effectively at excreting the medication. Personally I have a prn prescription of Vallium 2mg three times daily for anxiety. It is a very small dose but I am 74 I only take it very occasionally for sleep or if my A fib is bad which makes me anxious. I find that if I have taken it for a few nights in a row my concentration is really off so I try not to drive. That's just my personal experience but when you are dealing with patients in the home or hospital the staff or family members absolutely demand that something be done and meds are the only option. Of course a small dose should be started but unfortunately occasionally it has the opposite effect from that desired. Seroquil is rarely used as a first choice in hospice care and like anything else it can be wonderful or disasterous as far as behavior modification is concerned. but what is the alternative? Tie the patient down, not allowed and it won't stop them yelling, have a staff member restrain them physically? not practical, put them in a sound proof room? can't do that either, have a family member wrap them in a blanket and hold them all night? Sometimes the only answer is medication.. I have seen massaging the feet work but who can do that 24/7. Maybe some of the paid caregiver have some tricks up their sleeves they are willing to share.

vstefans, I'd like to suggest an article authored by Bradley Boeve, MD
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!

I sympathize with you guys. I am i the position of not knowing what mom is on b/c sister won't tell me what Mom is on and the stupid HIPAA rules say that only the POA has that knowledge. Sister has POA and won't tell me what Mom is on. So I just have to guess. I hate this HIPAA thing!! Sister has told the NH that "no family members are to know what Mom is on." So at least be glad you know what your loved one is on.

Oh, Jeanne, good article...I was just complaining about all the antipsychotics as a class...Haldol would be the worst with regards to drug induced Parkinsonism, ture; there was one called Mellaril that had enough anticholinergic effects with it to cover up the motor effects but has other problems and isn't used much any more, and the article would suggest Seroquel or Zyprexa are probably better choices if you absolutely have to have one. And of course sometimes you do. I almost lost a young patient of mine to Seroquel though; we had a hard time clearing up the parkinsonism, and they also got the cataracts that can happen with that and required surgery. Tardive dyskinesia is the things that's irreversible and I think that's lower in incidence too, but isn't that common in "our" settings as drug-induced parkinson's, or even akathesia or acute dystonia/oculo-gyric crisis. I have unfortunately run into some psychiatry folks and primary care docs both who think that "less" is "none" and just assume that newer agents can't cause any problems at all...i even had someone try to tell me that there was no way my patient could have gotten parkinsonism at 1-2 mg TID of risperidone and of course that';s excatly what had happened...side effects, rocks and hard places. Bleah. Thanks!

Coy's doctor listed him as allergic to these drugs: thorazine, mellaril, stelazine, haldol. I believe that thorazine is sometimes used for hiccups, and since Coy had many problems with hiccups, it was very good to know that this drug should be avoided!

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.

I was familiar with the use of Thorazine or as I knew it Chlorpromazine for agitation in the elderly. That and Phenobarbitol were about the only choices for sedation 50 + years ago. Recently it is used for terminal hiccups in hospice patients. It is very effective for this purpose but looking at all the side effects I would not want to use it for anything else.