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I am a physician, currently suing a nursing home for giving my father with Alzheimer's Seroquel which is obvious to me accelerated his death. DO NOT GIVE THIS MED'N TO PEOPLE WITH DEMENTIA!
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My Moms neurologist told me that it accerates death right and he did NOT want to prescribe it to dememtia patients, thats why he recommends Depakote, its safer. Its called a Black Label I heard, not for them and has a high death warning on them. I am so sorry for your Fathers passing.
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It is generally advised that elderly dementia patients not be prescribed this kind of drug. I can't quote facts or studies on why, but I believe it's part of the warning label. I think these are very dangerous drugs for anyone, so I'll let you know that as my disclaimer before I make my comment. My 85-year-old mother was prescribed Seroquel (after Abilify) and I think both were disastrous for her. A real zombie effect and long-lasting if not permanent neurological damage (tardive dyskinesia, Parkinsonism). As her caretaker I also felt I observed MORE psychosis, not LESS. After years of experience with these drugs, I believe they are another blind alley on the psychiatric professional journey. A couple of studies have shown that there is no long-term reduction in psychosis or improved outcomes even in schizophrenia. I think some day we will come to our senses and stop using these drugs. Meanwhile a lot of people, even children, are being damaged. That is my candid opinion. I would never allow my mother to take a drug like that again.
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And I have to pop in again and repeat that I am truly grateful for the small dose of Seroquel my husband has been taking daily for 8+ years, prescribed by an internationally known dementia expert (behavioral neurologist) at the Mayo clinic. Definitely this is a strong drug and should not be handed out willy nilly. But in the right hands, it can be a godsend. I would "never" allow my mother to take it, nor would I take it myself, if prescribed by an internist or anyone but a specialist who knows the disease, knows the drug, starts with a small dose, and monitors the results carefully. I understand how some of you can be dead set against this powerful drug. I just don't want to see the baby thrown out with the bathwater.

Antipsychotics in general may be overprescribed, especially in nursing homes. That does not mean they are never justified and never the best choice.
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Yes, Jeanne, I think you are right that according to our current understanding there are a few cases when a drug like Seroquel can possibly help. I'd emphasize that these cases are few, and this drug is definitely overprescribed. A doctor almost gave it to my mother for sleep. A nurse practitioner tried to prescribe it to me for depression. That's when I stood up and left her office. I think we need to use the greatest possible caution in using the drug. I consider it a poison, but other medicines can also be poisons that can still work for us in small doses.
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From the discussion board on the Lewy Body Dementia Association site, it seems that it is frequently prescribed for that disease. Sometimes it doesn't work, and a smart doctor then discontinues it. Sometimes it works a treat, as it does for my husband. Sometimes it works great for a while and then doesn't.

I think factors that need to be considered is how serious are the behviors that are being treated and what are the alternatives? Are there potential remedies with less risk? Have they been tried? If you have simple depression (not, for example, bi-polar disease) there are certainly other things to try without resorting to such a powerful drug. The same is true of typical insomnia.

I gues all of this is pointing to the importance of dealing with a doctor who understands the particular conditions he or she is trying to treat, and understands the risks and benefits of any drug being considered.
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My 90 yr old mom (w/ dementia) has been on 1 Seroquel (25mg) a day for about a year & a half; she took off once when my dad (now late) was in hosp. Worked like a charm; no obvious side effects.

Recently she began exhibiting much anxiety, agitation, sneaking outside, hearing voices telling terrible stories, seeing awful things, talking to herself all night, etc... So the dr added one more Seroquel at 6 pm, and the other at bedtime...however bedtime (a week later) is earlier, like 8pm. It's increasingly hard to get her out of bed, or out of her room, not dressing, no interest in anything but looking out the window. Isn't hungry, getting harder to get her to eat anything, "It tastes bad!", will hardly drink water, weak & tired, constipated some, just wants to lay down all the time.

So here I am, Christmas weekend...looks like I'll stay home to monitor her. I wanted to get her shower, but it's not looking likely! I'd like to cut back on this even before contacting her dr. Any more thoughts from y'all? Such a rotten disease!
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please read user reviews of this drug. I is NOT recommended for dementia patients. NOT NOT NOT. I was at the same place...using it for awhile, worked fine, then it backfired. The temptation is for the caregiver and doctor to UP the dose. Please, ask if you can try her without for a few weeks. Watch for choking, muscle stiffness, body stiffness or slumping. With this drug you may have to get her off it gradually. Please research. You will notice users of this drug are bipolar, and the doses they take are HUGE by comparison. I think we were on half pill, 12.5 mg day, and mom still had a lot of trouble. I actually figured she was dying at her worse point.

If your doctor does not know what Beers Criteria is...get another doctor. it is the protocol for getting the elderly off drugs, getting long-lasting versions rather than quick acting, etc. Mom actually did not need this drug in the first place, in retrospect. She just did not understand her GERD symptoms and was delusional she was dying...felt like heart problem. Unfortunately, the doctor replaced with Ativan, and that caused other problems. Eventually, we got her off every single med and she has no hallucinations nor delusions. Live and learn, at Mom's expense...and tough caregiver job.

Hang in there...
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CajeanL50, I am truly sorry about how you are spending Christmas weekend. Hugs to you as you deal with these challenges.

Your mother's new levels of agitation, sleepiness, etc. could be a result of the drugs she is taking. This started, I understand, before the increase in the Seroquel, so presumably it is not totally a result of the increased dose. How long will it be before you can consult her doctor? Is there a nurse line provided by her clinic or insurance that you could call and discuss the situation with? I don't think that this is a drug you should stop cold turkey, but a knowledgable source may be able to advise you about a reduction until you can talk to her doctor.

The changes in her behavior could be related to something else that is going on in her body, such as a uti or low level infection of some kind.

And the changes could be the progression of her dementia. Dementia by its nature gets worse over time. Perhaps that is why the doctor is trying a higher dose of something that seems to have been working well.

Diseases of the mind are extremely hard to manage. And we all feel so helpless when our loved ones are suffering and we don't know what to do. Ultimately the disease will win. The goal is to maintain as much quality of life as long as we can, and to optimize comfort and minimize distress. Know that you are doing your best.

I hope that you can talk to a medical professional now, and to see her doctor soon.

Sit in her room, hold her hand, enjoy some holiday music together. Again, hugs to you.
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Thank you both for your insight and encouragement! Her blood work & urine spec. came back negative. The first week she was on the upped amt of Seroquel wasn't bad, but now maybe it's accumulated. The staying in bed all day started after the increased amt. She's having some trouble swallowing her all of pills too; previously could toss back 5 at a time.

I'm hoping to talk to her dr on Monday, and see if I can get her into a gerontologist that specializes in AD/dementia asap. But before that, I'm going to halve her 6PM dose, or I'll never even get her a much needed shower! I feel so bad for her, but glad she's unaware of just how much she's changed. Two years ago she was on Celexa for anxiety, but it eventually backfired; hence Seroquel.

Thanks again, I know my husband & I will work out some time with our extended families...just had a tough moment! ;-) Merry Christmas to you & yours! ♥
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MARIE:

It's a lot easier to dope somebody up than to take the time to find the underlying roots of the problem. Triggers identified, you can formulate a treatment plan that includes both natural remedies and Rx medications.

Seroquel might alleviate -- if not mask -- the symptoms and help her relax, but what do you do when the effects wear off?
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Marie, the head of neurology even told me no seraquel for my Mom due to her dementia, and they put her on depakote sprinkles, works fabulous! My Mom also always had negative urine cultures yet the dr treated her anyway and that also worked because, even on depakote, she started hallucinating 2 weeks ago, I did a week of amoxicillin after a long talk with the doctor to please treat tojust see what happens, and she is back to normal. Push Those Doctors!!! You have to!!!! Ask for depakote please and know you are a great daughter, no matter what day it is!!
(((hugs)))
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PS Anti anxiety medication will not only make her tired, it will make her unsteady on her feed (if she walks) , and it constipated my Mom so badly she became impacted. IF they do use it, give 3/4 teas of miralax daily, or whatever your dr says. I've been that route too, its not a good thing, its devastating when they are constipated. My Mom has prune pudding with her pills and 3/4 teaspoon of miralax every morning to keep her bm's soft. Its trial and error until you get the right dose.
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When my mother took Seroquel, muscular weakness was a big problem. And it persisted for quite a while. Is there any way the doctor could get back to you sooner than Monday, or anyone else who could help? I think you're doing the right thing by cutting the medicine back. Anyway, that's what I would do. Because it seems that she got worse after the new dosage. And the fact that she's having trouble swallowing pills, sounds like the muscular weakness my mother had.
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Wow, I almost forgot, here are some things that work for us. Mom fell and broke her arm, after that, two UTIs both needing a hospital stay, then colitis, all from the pain medication (lortab, Vicodin). We used d-mannose, which seemed to work well before. But after she got home from the last (fourth) hospital stay, she already had another UTI (!). She had not had d-mannose during those stays. I don't recommend this for others, but my research showed that d-mannose was believed to be pretty innocuous, so in desperation I doubled the amount she takes. I watch her urine now every day and she's had no problems for about a month. That's my hot tip. I also heard Mirelax was harsh, though we had to resort to a massive dose once. Milk of Magnesia comes in tablets, if your mom can't stomach it like mine. I also do a prune routine with Metamucil.
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Mannose is in fact good stuff for UTI prevention. Actually ANY infection can set them off. Seroquel and all the related drugs can cause dypshagia. If and only if you and the docs find your loved one absolutely cannot do without an antipsychotic once everything else is identified and treated, one way to decrease the side effects, besides minimizing rather than escalating doses routinely, is to add a medication called Cogentin (benztropine).

Sometimes, I could not get other docs to keep mom on the supplements that helped her either. Maybe pulling a PubMed abstract or article to back you up would be worth a try.
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I agree 100% about the antipsychotics. I think the jury is still way out on what good they do and why. And many dangers are clear.

I looked using Mendeley for articles on d-mannose. Here's one very specific to UTIs that I found: "Structural basis of tropism of Escherichia coli to the bladder during urinary tract infection." You can find that one by title. To paraphrase what I *think* it means, d-mannose seems to take up spaces in the bladder wall structure that e. coli would bind to. And prevents the binding of the vast majority of e. coli bacteria. I'm planning to back up my argument to the doctor using this and a couple of other articles. Have to be sure to understand them first! But it can be done.
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My dad has been in a nursing home 4 months, they reduced the SSRI he was on (per NYS law) and the aggressive behavior began. He does have Aleheimer's, is very strong and gets around unassisted. He has hit staff, other residents. He has been given Seroquel in increased increments (now 3 x day 75mg.) and now Lorizapam morning, noon, and every 4 hours "as needed" Now when he talks he makes no sense, is out of it, and has absolutely no recognition of me. What is a better drug to use to control his sudden aggressive outbursts so everyone is safe.
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Depakote!! You can get it in sprinkles and put in pudding or on food. My Moms neurologist is the head Neuro at the hospital and he always uses Depakote. He doesnt believe in seraquel type medications as they cause heart attacks , strokes, and can make them crazy hyper. Please ask for it, its only a seizure medication that calms the brain, its so safe , really, compared to anything else. (no my mom never had seizures)Lorizapam will cause constipation and make him unsteady on his feet, he will not be agressive on depakote, let me know if you have any questions. Good Luck!
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Lamictal is another mood stabilizer (used first as anticonvulsant like Depakote). My mother takes it for bipolar disorder. I don't know whether it would work the same way as Depakote, but it doesn't have any liver effects, as Depakote can. Lithium is another drug that many doctors are afraid of, but can be used sometimes with close monitoring, and I think it's been shown to have a calming effect. My mother also takes a low dose of that. See an article from the journal Nature in 2003 called "The Ups and Down of Lithium." I think lithium has been unnecessarily ostracized. I far prefer it to any of the antipsychotics. I guess this better serve as a disclaimer that I favor it, also for myself. It's true that it can be dangerous, but that is why it must be very closely monitored. You always have to consider the alternatives, which are not all that attractive. Lithium also seems to have a protective effect on neurons.
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Hi - my mother has vascular dementia and Alzheimer's. She was put on Resperdol for her angry outbursts but this did nothing much for her. The specialist we see has now put her on Seroquel and we had a terrible reaction with it at first. Apparently she was not on a high enough dose. the dosage was doubled and she has settled a little more but still has outbursts. I don't think any drug will have a great effect for my poor mother. The specialist has said that she has BPSD - Behavioral and Psychological Symptoms of Dementia. This is a phase of the disease that not all dementia patients get. However, unless it can be kept under control by any of the psychotic drugs available which all seem to have horrendous side effects, she will end up in a lock down ward sedated all of the time. There is no easy way to treat anyone with these symptoms and my heart breaks every time I see mum. My dad is alive at 91 years old and is with her in the nursing home. he gets the brunt of her mood swings and aggression and I hurt for him. Unfortunately there is only one way this disease/ condition can go and it is not good.
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Some people have had good results with Depakote sprinkles, ask her dr. :-)
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I also was cautious of the different drugs used to calm my mother after episodes of anger and agitated behavior. She was not on a large dose of Seroquel, but when she was exploding with anger and paranoia a few weeks ago, the psychiatrist upped the dose and now she is focused and calm. I can have a conversation with her, although her confusion may still be quite evident. She remembered our topic of discussion from one day to the next which was not happening recently. So I am not displeased with how she is reacting. Perhaps it is individually specific.Obviously, if she has any side effects, like those previously stated, I will tell them to withdraw the drug.
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What about the use of other anti anxiety medications such as Abilify?
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The first time they gave my mother seroquel in the hospital she was seeing little people taking food off her dinner plate. I have repeatedly told hospital doctors and nurses to quit giving my mother seroquel and they just keep doing it. I have told them that I have read reports that say seroquel should not be given to elderly people with dementia. They look at me like I'm from another planet and just keep doing it.
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What about the use of other anti anxiety medications such as Abilify?
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Dada has been on seroquel since January. We are fortunate that it seems to have controlled his psychotic episodes . He receives a small dose 25 mg in the am and 50mg in the pm. For now this seems to be working and although I also read about the adverse effects on the Internet and grilled my dad's geriatrician we both decided to try this drug. I feel the benefits have been great and now 8 months later dad is having anger issues. I can not say if it is a side effect of the drug or his frustration over losing control over day to day activities. I will speak to his doctor about depakote. My dad is 97 years old. I am thankful that I gave this drug a chance and it has been working for this long. Dad still walks with a walker and his appetite is good. So I feel this drug was a good choice.
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Seroquel caused my 91 y/o mother in assisted living/memory care to hallucinate (people were in the air conditioner looking at her) and have extreme agitation (kicking and arms swinging) for several hours after it was given to her for anxiety. It took a sitter and myself to hold her so she would not harm herself. It may work with other persons, but not my mom.

From the product literature - SEROQUEL XR can increase the risk of death in elderly people who have memory loss (dementia). SEROQUEL XR is not approved for treating psychosis in the elderly with dementia.
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Our doctor put my mother on Seroquel months ago as a 'sleeping tablet' when I reported that my mother had been getting out of bed in the night and stamping around shouting her head off at her hallucinations.
A few months ago I took her down to see the doc because of her behaviour (she's always been very aggressive towards me - she has NPD), so the doc upped her dosage to two Seroquel a day. It has helped somewhat, she's not getting out of bed and shouting for hours, and she spents a fair few hours of the day asleep on the couch!
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To Sunshine 73- My mom with Alz has been on Seroquel for 5 months. She was hospitalized with severe agitation for 12 days last spring. They tried several meds including Haldol which made her coma-like. Others made her manic and seeing things. She's been on a low dose of Seroquel. At first, for about 3 weeks while she adjusted she forgot how to eat (needed to be fed) and developed OCD behaviors, but she adjusted and now she's more herself than I've seen her in a year. She's content, friendly and emotionally appropriate. The Doc wants to wean her off it, but I'm leery, because she's so much better off on the drug. The risks seem like a small thing compared to her daily happiness and contentment. She's in a nursing home.
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