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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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My mom is 91 and also has Alzheimer. Its been about 8 years now and I her daughter an her care giver. she is only on 5mg of Aricept and 12.5 of serequil. lately her sundowners has been very bad for 3 hours she and I are super anxious....me because I don't know how to help her. Her Dr now wants her on a low dose of Ativan and remove the seriquil. Can you just stop taking seriquil? he says yes but I'm worried. What will the Ativan do?
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mondocjaf, I'm not sure I'm following how much of what your husband is now taking, but I think I'd keep following doctor directions until you've reached the therapeutic level and been at it a few weeks. If it still doesn't solve the issues, then it may be time to discuss changes with the doctor.

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!
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My 64 yr old husband was diagnose with Alzheimer 6 yrs ago,and I have been his caretaker ever since .This past 4 months his behaviour have change to aggressiveness , severe anxiety,with paranoia.We were referred to a Psychiatrist and started on Xanax.25mg and have been increasing that to 5mg 4x a day. It does help calm him down.But how long would I be giving that the Md has added Seroquel 5mg to start 25mg nightlly and has been increasing that as well ,Now we are on 50 mg 4x a day, and have not seen any changes. The anxiety and aggressiveness comes in every3-4 hrs in the daytime, Its been 3 weeks now, Should I give more time? or ask his doctor for a change of med?I have never been in an Alzheimer group before, but as I read all these comments and news feed I realize I am not alone am going thru difficult time. We have been married 35 years , he is a very warm , very helpful man all his life and to see him like this is truly hearbreaking .....despirate wife
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I could not care for my husband if it were not taking seroquel. His behavior is manageable with it. Its obvious he needs it and the assisted care facilities he has been in for rehab even have increased it because of him acting out.
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@secretsistergiveahug ,
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.
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Seroquil XR (extended release) must not be crushed. Look up the medication on Drugs and you will see it is not approved for use in patients with dementia and can have some very nasty side effects. Question the geriatition about the wisdom of prescribing this medication for your husband who is only 65 and could survive for many years. Get a second opinion if you do not like the answers you recieve. you could also have a talk with the pharmacist first and get his opinion.
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Can Seroquel by crushed? geriatrician has prescribed for my 65 years old husband he has frontal lobe young onset of dementia and will not swollen tablets.
Thank you
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Randy I would want to see the aide in action before I blamed to patient for lashing out. It is possible the caregiver did something mom found unpleasand even though the caregiver knew it was necessary or she was just hurried or handled roughly.
Seroquil can be very effective for individual patients or it can have nasty side effects so once again it is trial and error
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Probably not - she may just NOT have wanted the bath. Seroquel can have side effects but more commonly motor in nature rather than crankiness, but if you increase the dose and she's even worse, it's possibly a bad drug for her. Side effects happen unpredictably. It is not always easy to sort out.
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My mother (87yrs old) with moderate to severe dementia, has been taking 12.5mg of Seroquel once at bedtime for 7 days. It has seemed to improve her mood & energy level (and earlier her sleep). Today she struck her caregiver while being bathed. Could this one incident/level of combativeness be a result of the cumulative effect of the Seroquel -or- is this a different manifestation of her dementia? We are wondering if an increase in the drug -or- it's stopping would change this?
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Baclofen was pretty effective, vstefans, in the early days, but by the time he developed dementia it wasn't working anymore. Then Gabapentin was tried, but that didn't do anything for hiccups. (Worked great for my sciatica, though, so the pills weren't wasted.)
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Baclofen is a good alternative med for hiccups or hiccoughs however you like to spell it. Not everyone has heard of this. Like every other drug we have discussed on here, there is side effect potential, and YMMV.
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Seroquel is NOT for anyone, especially dementia patients. I did the research and I invite you to do it, too. Yes, caregivers know best. They see everything. The negative side effects can be devastating and cause prolonged grogginess and/or tremors. I hope you do the research, have a competent doctors who specializes in geriatrics, and stay away from anti-psychotics. Other meds may help, such as anti-anxiety meds and antidepressants. All the best to everyone dealing with this.
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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.
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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.
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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!
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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!
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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.
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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!
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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.
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Is it safe to give a Dementia patient Seroquel only as a PRN?
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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.
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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.
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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.
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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.
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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.
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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.
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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!
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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
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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.
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