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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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Marie, we are in the same position with my Dad, who's in a Nursing Home facility, and also exhibiting angry/confrontational behavior with residents. We had to move my FIL, Dad's roommate away from him, because my Dad was bossing him about, and got backhanded for it. They have been screaming at one another, and generally upsetting the whole unit. One day I went in to visit, and thought something was desperately wrong with my Dad. I called for his nurse, had his vitals taken, etc. Come to find out, they had given him Ativan, prescribed PRN (as needed) to control his aggression. The result was extremely sedating, and he could barely walk. That was more than disturbing to me, but they told me nothing else worked. They had tried redirecting him, distraction, etc. So, behavioral modification wasn't working. I have seen his angry outbursts, and Dad prowling into people's rooms, or into an occupied bathroom. This is his third room change at the facility due to his behavior, which keeps him in constant trouble. And he's been standing on chairs, lately, trying to close window blinds, and they're afraid he'll fall, and they'll be liable. They tell me, "This is just the progression of his disease."

You say the drug they suggested your Mom take was not for those with Dementia. I read that about one of the medications prescribed for my Dad, too. (Can't remember the name of it, at the moment.) I told my sister about it, and swore I'd not allow them prescribing it for him. But the orders changed to something else. They can tap dance around anything, it seems. I'm always getting explanations by someone about something, explaining away their reasons for some action. It makes you wonder who to believe sometimes, and is generally frightening. Since I'm no Pharmacist or Physician, I have to rely on the "expertise" of others, who prescribe these things every day. I figure they know more than me about these matters. Nevertheless, when I research things on line, or read the package inserts, I too, am disconcerted by their warnings.

I asked a Physician about it. He told me that they have to report negative reactions by anyone who's ever taken that medication. These can be anything from headaches, to dizziness, nausea, earaches, toothaches...etc., and the list can be quite extensive. They say it doesn't mean that taking the med will necessarily cause these symptoms, but that it has in "some people, at some time." As for the "not for those with Dementia" question, I never got a clear answer when I asked it. So, I'm just as curious as you are. I've also been told that not all we read on the Internet is reliable. Now, who are we supposed to trust??? Good question!

For all they have tried, and for all they are prescribing, nothing has seemed to curb Dad's negative behavioral tendencies. Some days I wish he would progress out of the angry stage he's in, rather than play guinea pig to these failing experiments. And some days, I just want to cry for him. Alzheimer's and Dementia are not kind. A friend, who's also a nurse, told me that every behavior has a reason. It's our job to find out what they are trying to communicate through the behavior. But it seems the medical profession wants to treat the behavior, without always investigating or eliminating the cause.

Sorry to hear your Mom and family are strugglingwith this issue , too. Seems to be a common struggle... It's hard to see this happen to our loved ones, isn't it? And it's hard to be their advocate, when we don't have all the necessary answers.
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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.
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My mother has been prescribed Seroquel for her negative behavior, but it has changed nothing. When I voiced my concerns over having read the same thing on the internet (on the drug manufaturers website no less) - that it is not recommended for elderly with dementia - I got an attitude from the neurlogist and she said that every neuroligist treating elderly w/ dementia has som of those patients on Seroquel. what are we supposed to believe? Why is so hard to look out for our parents?
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My father just went to an assisted living, dementia unit, last week. He gets extremely agitated and angry around 4 to 5PM. The professionals call it "Sundowners Syndrome". They have started him on Seroquel, but the behavior hasn't changed. In the hospital last week, they put him on Ativan and he was a zombie. That is why his doc changed to the Seroquel.
The visiting nurse called me yesterday morning and told me that he broke both of his big toes because of kicking doors after we left on Fathers Day. I cry all the time thinking about leaving him there, but I know that there is no other option. He threatened my mom and his in home caregiver, so we have no choice. I just keep telling myself that he knew this was going to happen because he went through it with my grandmother and that is why he bought the long term care insurance.
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I understand your concern about medication and its effects. Soemtimes there is no other choice than to try a particular medication. My Dad does not have Alzheimer's. However, he was prescribed ativan for anxiety during a hospital stay. I discovered that the prescribed dosage for this medication can vary widely. Dad does very well on a very small dose. It relaxes him without other negative side effects. I suggest you ask what dosage has been given. See if they are willing to try a lower dose to try to control the symptoms. It may be that it with a little testing, a lower dose will help resolve behavior issues.

I hope this will help you. Please let us know how you make out.
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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?
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Thanks to all who have commented. Just got off the phone with his facility...he has now thrown the toilet tank top and cut his leg. The doc is suggesting seraquol morning and evening.
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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!"
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if you google "whendoesthegladstart" you will find my blog, that I started in late Jan, with a fit thrown my my mother while on Seroquel. At that time there were many wonderful clever TV ads about the drug with the stern warning NOT FOR ELDERLY DEMENTIA PATIENTS. I finally paid attention and did research. My mother had most of the warning signs of dangerous side effects: total body rigidity (like a 2x4 board, she slid off the chair!), facial contortions, choking. She was put on it because of some episodes that happened in the hospital when they were testing for digestive disturbance. She'd have some nausea, and the doctors would come running to poke. She elbowed back with gusto. She'd sort of disappear into her self when she could not make sense of her Symptoms.

I got the doctor to agree to discontinue Seroquel (very low dose, too!), giver her a week and try something else. Ativan. That seems much less damaging on the side effect side, but eventually she had these weird agonizing bladder distention problems, urine retention. They were almost ready to eternally catherize her (and put her in nursing home), when my RN nurse happened to mention this was common side effect of Ativan. So we stopped that and so did the bladder agony. A withdrawal side effect might have been morning leg cramps. Anyway a few weeks of that, and they stopped.

Guess what? Mom has been off all psycho drugs for a month or so, and has had absolutely no delusional behavior...no "wanna die, just let me die" stuff, no DeadZone impersonations, no pulling of hair and gnashing of teeth. A friend's elderly mother was hospitalized for a few days and they gave her Ativan just in case, and she had paranoid delusions all night long. Just the opposite of what the drug is supposed to control.

Mom is "ok" now, nothing wrong at all, cept memory loss and boredom. She's learning to write again, starting with alphabet. She's just returned to a few days at the senior day care center. This has been a whole year of Mom's insanity... and now everything is FINE?? What the heck?

We've just started her back on small dose of Zoloft and one BP pill, and that's it. As I mentioned, I blogged about all the ups and downs since January in my whendoesthegladstart blog. just google the phrase and you'll find it easily.
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Please run, don't walk away from Seroquel. It is a powerful anti psychotic, not a first choice for anxiety. I would never allow my parents to take this, nor anyone else I care bout if they would listen. I know b/c I have taken it myself.

I would try a tiny, tiny dose of Ativan or Xanax before I would remotely consider a tiny, tiny dose of Seroquel.
It messes with your blood sugar and cholesterol also.
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You know, when the hospital docs Rx'd Mom the Seroquel, they acted like it was a no-thing. Since it did seem to stop the outbursts initially, I didn't think much of it, and was careful to keep her on it. The thing about these drugs is that if the person continues to act out, the home caregiver thinks to up the dose. And if that doesn't help, up it some more.

Once I realized Mom's bizarre behavior and physical side effects were probably due to the Seroquel, I stopped researching. But the blood sugar problem might have had to do with attention span, wooziness, etc. Now I don't remember. Learning about the bladder distention/urine retention problem was just a fluke; myRN niece used to work in a geriatric psyche ward (handy to have as a resource, eh?) and told me about the urine retention problem with the Ativan and similar drugs. If I hadn't heard about it from her, Mom would probably be in a NH,fully catheterized and drugged like a zombie. Once we got her off Ativan, no problems with that...and no problems with delusions. What the heck! A full year of insanity. Better living through chemistry.
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My husband of 61 years,has Lewy Bodies vascular dementia. I still have him at home,but have a place reserved for him where they take care of those with his problem. I'm trying to take care of him as long as he has a lucid moment. The doctor just put him on Seroquel as he became violent recently. I hope this med. works,but today he got angry. I'm interested to know if anyone has had good luck with this drug?
Babs
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Please google "Seroquel drug reactions" or something similar and you will find testimonies from people who are really psychologically whacko, bipolar extreme cases. That is what this drug is meant for, and these folks take big big big big doses. I couldn't believe it. So, imagine my mother's little half pill, quarter pill pittance wouldn't impact her much. WRONG.

There were BIG WARNINGS that this is not to be given to elderly dementia patients. These were both on TV when they were advertising the drug, and on advertisements on sidebar ads on the web...scrolling type with this warning! Look for side effects of choking, facial contortions, rolling eyes, pulling hair like melodramatic crazy person, sticking out tongue like it doesn't fit in their mouth or they are straining at it. Oh, this could very backfire into "Seroquel Anger," Let's see, death is a nice side effect, caused by heart problems. A lot of these side effects are non reversible apparently. My mother apparently survived this mess, but how many months as insanity caused by Seroquel. She was then Rx'd Ativan, which had less side effects.

I imagine that the dose will continue to be increased until your husband is a zombie. That is the inclination, right? if the behavior isn't controlled, up the dose. Seroquel caused anger in my mother, a snappy impatience. Really who can tell if it's the Alzheimer's progressing or if it is a drug? I'd ask to have it changed.

OH, body stiffening so severe that she straightened like a board and slide off the chair. Falling over in her chair so I had to tie her up. I have a whole pile of ties her for restraining her. EVIL. I finally had her taken of Ativan as well, and she hasn't had ONE delusional episode since. Sorry if I repeat myself. She was driven whacko in the first place because she could not understand the acid reflux and gas was NOT a heart attack. She thought she was dying. So then she was given a whole nightmare of physical symptoms with these two anti-psychotic/anxiety drugs. And nobody wants to be responsible for it. Impunity for all, except my mother.

You can also go on twitter and search the term. The people who post about it are really psychotic cases... those with dementia are obviously too out of it to post about their side effects, nor can they relate that their symptoms are due to the drug and not themselves and the Alz condition.

I pray for you to get through this. Do research online, please (user forums, not official site) also search this site for the term. You will find others with bad experiences.
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Hello all, I also had problems with my Mom getting agressive after her strokes. She was taking off up the road beating up my am caretaker and that did it for us. She got so agressive and nasty, so unlike her! She also has alzheimers. The Neuro recommended Depakote and it works great. He recommended 4 a day (125mg) but I only keep her on 2 a day. (sprinkle capsules) We stil sometimes have the sundowners of her trying to get out of the house, or daycare, but it STOPS agression in its tracks without side effects. Her Neuro said its a safer commonly prescribed drug used in nursing homes and the daycare personel tell me most are on it. It lets us keep our parents at home, or happier .They dont want to be like that, they cant help it. I hope this will help someone else.
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The comments I've read have been very helpful. I was up at 4:00 this AM,reading all. I decided not to continue with the Seroquel after seeing what it has done to my husband during the last two days!
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Do you have a Plan B?
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Oh, if you want to just make them sleepy, you could try Benedryl, the allergy OTC med. The Tylenol PM has Benedryl as the sleep inducing part. When we were getting Mom off Ativan,the doctor said that was much better solution to get Mom to sleep during the night. We used it a few times. For awhile, between Seroquel and Ativan, we doubled Mom's Zoloft, as that may have a calming effect.

But you know what, they (doctors) don't done KNOW nuttin about all this. It seems to be a big crapshoot, with our parents as the guinea pigs and "there are no medications without side effects" and"part of normal Alzheimer's decline" as their impunity shield.

As much as I eventually decided to X the Ativan, it could be useful for knocking back weird behavior once the patients starts on a rant. the pills are so small, that a half a pill would do a lot, even quarter.

I at first assumed I should use it regularly to stop attacks before they even began, and dished it out a half pill at bedtime, and a quarter in AM. And for awhile it quelled outbursts. And then and then and then...

Just to let you know that this Ativan can take effect in about a half hour. My ER intake-desk nurse niece said that they used Ativan to calm relatives who had someone die in the ER.

However, if the patient is already upset, good luck getting any kind of pill or food down them. I keep it on hand just in case, and darn if there is now no "case." for now...who knows what the next day will bring.

Glad to know about Depakote. There was a funny (written in joking style) report about the side effects of that drug on one of the reporting sites. Said it would make you an instant elderly person. Would of course read up on it totally before I had mom get on it.
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On the depakote, if you get it, ask for the sprinkle capsules. You can put it on their food if you want. I crush all of my mothers medications mixing them in a tiny shot glass with a couple of teaspoons of Prune Pudding that I make. (This keeps her more regular in the bm department also). They WILL sleep MORE at first, but that goes away so hang in there. Its not an antipsycotic , its an anti seizure medication and the first line of defense Her neurologst told me before trying drugs like seroquel that have been proven to cause problems in the elderly. I find when the drugs are all crushed (check with your Dr first because I had to change some of her meds that couldnt be crushed) I can get them into her quickly I start to tell her a little story, "say ahhhhh Mom" , put the spoon in quick, and finish the litlte story, it goes well. Ahhhh the tricks we use huh? Does anyone else feel trapped inside today? Sometimes it sure gets to me.
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Marie,
Please be careful with the Depakote, I've taken both for PTSD and I would not recommend either. But....I don't know what dose your mother will be taking, her health status or how old she is. If she needs to gain weight it will take care of that.... and some people lose a lot of their hair (I didn't though).

God Bless
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Addition of new drugs in the elderly should always be carefully monitored. Seroquel is a fabulous drug when given to the right person in the right dose. Unfortunately, like a lot of psych drugs it does not suit everyone & it is nigh on impossible to tell who it will work with until you try it. The extrapyramidal side effects that people are describing on this thread are a bad side effect. The drug should be stopped immediately if these occur. Also Seroquel anger is an increasingly researched side effect that should result in discontinuation. Seroquel is worth a try as it generally has less side effects than the older antipsychotic drugs, but again, use with extreme caution. Monitor for side effects & speak to your prescriber if side effects occur. If you do not get a satisfactory explanation from your prescriber, tell them you are not satisfied. Tell them you are worried about your mother. Tell them you do not understand. Get a second opinion from another health proessional. And do not believe everything you read on the internet unless it is from well respected peer-reviewed publications. People who relate personal experiences on the internet are more often than not highly emotional about their bad experiences & do not give a well-balanced account of the facts.
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I do have to chuckle in shock when I read that "Seraquel is a fabulous drug" when its black marked with the highest probability of stroke or massive heart attack. Depakote is safer by far according to my Moms Neurologist and doesnt recommend seraquel unless its a desperate situation. Dont get me wrong, I prefer no drugs but I do agree with the last comment, dont believe what you read on the internet, including here.
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In response to luvmom - I hate to repeat myself but Seroquel IS a fabulous drug when given to the right person at the right dose. Please read the whole sentence before you start chuckling. And as for the highest probability of stroke or massive heart heart attack...as compared to what??? I think an injection of powdered Depakote straight into the aorta would probably have a higher probability of stroke or massive heart attack than a carefully prescribed & monitored minimal dose of Seroquel. You might also note that Depakote has a lovely long list of severe possible side effects like liver failure for one. Depakote is actually an anti-seizure drug, also used as a mood stabiliser, so it's probably a little unwise to compare them in such general terms.

Anyway, the point was, all drugs have the potential for nasty side effects, especially drugs that alter brain chemistry. However, when someone starts to exhibit angry, confrontational behaviour, it can be very distressing not only for the people around that behaviour, but also for the person exhibiting that behaviour. People with dementia may well be aware that their behaviour is changing & may be embarrassed & ashamed of their inability to control their behaviour.

Unfortunately, using anti-psychotic drugs, mood stabilisers, anti-depressants etc, can be a bit of a gamble. There is not a lot known about how these drugs work, but we do know that they DO work...not for everyone, but they DO work. Sometimes it's a matter of trying a few different ones until the right one is discovered. It's not a very precise science.

If you're going to go down this road, just be sure that your mom is carefully monitored for changes in her mood, behaviour, also blood pressure, other vital signs, relevent blood tests (for example, liver function needs to be monitored with Depakote) & you need to be able to trust the doctor. If not, get a second opinion. Also, be sure that other methods of behaviour management should have been tried before going down the medication road. Ask the facility what they have tried. If you haven't already, perhaps get in touch with a dementia support group to see if you can get some education about behaviour management in dementia care.

Good luck
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Should an elderly patient diagnosed with vascular dementia be taking Seroquel?
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According to my moms neurologist, its the LASTchoice because it causes heart attacks and strokes. depakote is what he recommends and works like a charm, its an antiseizure med but works.
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I don't reccomend serquiel my best frind died 2 yrs ago from this mediation she was 49 yrs old she was in a psych unit. the Drs at this hospital over medicated my friend. sje didn't have alzhemers. she was manic depressive.. please i urge you don't let your love take this medication.
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My mom was on ativan 0.5 mg for anxiety and ristrral for sleep i t was 10 mg. that seemed to work for I don't reccomend seriquierr for demsia alz. My 1 frind was on this she died her dr over medicated her. I cn'a beleave some of Drs they need to recall this drug. . my friend mother is sueing the Drs who over medicated my friend.
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Are anyone's parents with dementia actively on seroquel and if so, how are they doing?
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Tried that, it made her nutty and aggitated. Depakote works wonders and is safe, its for seizures (but she dosentt have them). Seroquel is dangerous and only to be used as a last resort my moms neuro said. good luck
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My husband (Lewy Body Dementia, 85) has taken Seroquel for almost 8 years. I would hate to be without it. It is THE drug that made it possible for me to keep him at home. In his case, he takes it only at night and it addresses nighttime agitation. It was prescribed by a leading, internationally respected sleep psychiatrist and approved by an equally well-respected Mayo Clinic researcher/behavioral neurologist. It has been highly effective, with no change in dose or side effects the entire time he has taken it.

My bipolar brother also takes Seroquel, also as a pre-bedtime medication.

I have also heard from other CGs whose loved ones have the same diagnosis as my husband that Seroquel was not effective, or that it even made matters worse (which stopping the drug solved.) When treating disorders, ESPECIALLY problems in the BRAIN, what works magic for one is a nightmare for someone else.

I would ask, how qualified is the doctor you are dealing with to treat the condition your loved one has? Can you get a second opionion from a specialist if that is appropriate? Is the doctor going to start with a very small dose and instruct you what to watch for by way of side effects and effectiveness? Is he or she going to approach this as a "trial period" and be willing to stop it and try something else?

WIth any drug there is a risk it won't work or it will temporarily make matters worse. And it is true that some LTC places overmedicate for their own convenience. For this reason some people shy away from drugs. I am a huge fan of drug treatments, carefully thought out and slowly, watchfully administered. Better living through chemistry is my motto! :) I saw what my husband was like without drugs, and what a huge positive difference they have made in our lives.

Be cautious, Sunshine. But also be brave!
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My 94 year old Mother with "at least mid-stage dementia", not Lewy Body, takes 100 mg Seroquel at bedtime as a sedative, and was on additional 25mg divided throughout the day for her irritable personality which now they call "agitation".
I'm not sure what they called it when she was in her 30-40's when I was first
exposed to it, but It's about the same behavior except she doesn't threaten us
anymore. Psychiatrist prescribed Celexa, an anti depressant, for use during the
day to try to wean off Seroquel. I have noticed an involuntary twitch that I read
was a side effect of Seroquel. Mother's Geri psych says it is effective in the lower
doses. Psychotics are prescribed 300mg and up! The doses given elderly are very low! (God please have mercy on us.) hugs, Christina
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