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Seroquel to treat delusions and agitation

My DH is suffering from delusions and agitation for more than 3 months. His neurologist prescribed 25 mg of Seroquel a day and to increase it to two or three doses if his delusions / agitation are severe. His neurologist is a highly regarded doctor who is doing state of the art research on AD.

A recent NewYork Times article stated that  the use of antipsychotics in older dementia patients DOUBLES the risk of death due to cardio vascular issues. I am torn on what to do. I cannot use Validation Techniques because he thinks I am going out with other men, and that is intolerable.

I appreciate your advise. I have been on this board 7 years and have learned a lot from your advise.

Comments

  • Joe C.
    Joe C. Member Posts: 981
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    Stella Luna, DW has been on seroquil for about 18 months due to delusions that people were coming to kill/hurt us. She would insist we needed to get out of the house at all hours of the day which left me sleep deprived and since I could not take her anywhere due to Covid we just drove around which was become unsafe due to my lack of sleep. The seroquil has worked wonders for the past year and a half. I know there are risk with seroquil but I look at quality of life vs. quantity of life in my health care decision. Before DW started taking seroquil she was so agitated and afraid the she (we) had no quality time, since she got adjusted to the medication life has been much better for the both of us. I do not think I could have kept DW home this long if she had not started taking seroquil.
  • David J
    David J Member Posts: 479
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    Seroquil has been good for my wife. Her agitation was keeping us both up at night, and during the day her fear made her miserable and kept me from doing anything but be with her and try to comfort her. Dose is much higher than your husband’s dose. She is taking 50 mg twice during the day and 200 mg at night. Like Joe, quality of life trumps any risk of cardiac issues.
  • Doityourselfer
    Doityourselfer Member Posts: 224
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    My husband has been taking Seroquel for 4 years, started out with 25 mg per day and now is at 400 mg per day.  He is difficult to take care of when he's highly agitated and Seroquel  helps to calm him tremendously.  I wouldn't be able to keep him home without it.  I agree with the others in that quality of life outweighs cardiac issues.  My husband has no other health issues except for Alzheimer's.
  • Stella Luna
    Stella Luna Member Posts: 50
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    Thank you so much for your invaluable advise. I will continue giving my DH Seroquel and hope my life goes back to “normal”.
  • Just Ro
    Just Ro Member Posts: 43
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    My DH started taking Seroquel and Aricept in March 2021.  I was reluctant to start him on the medications due to possible side effects, but his behaviors were intolerable, so decided to go ahead. He responded very well until about 3 weeks ago when he started having “breakthrough” behaviors.  Initially, the Seroquel eliminated hallucinations, delusions and wandering.  Unfortunately, those behaviors have returned.  I have a call into the Neurologist today to see if we need to increase the medications. He is currently on 10mg Aricept and 25mg Seroquel, both generics. It is so frustrating, but we did get about 5 months of relative calm. He did not seem to have any negative side effects from medication. Good luck, Stella.
  • M1
    M1 Member Posts: 6,788
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    If it helps SL, a lot of the cardiovascular effects of these drugs are dose-related, and the doses used in dementia are typically a lot lower than the doses used for other psychoses.  So overall, the risk is not zero, but it's not terribly high.  There is a definite tradeoff with the behaviors and for many of us, worth the risk.  My partner is on a very small dose at bedtime and it helps enormously with sleep fragmentation and agitation.
  • Joe C.
    Joe C. Member Posts: 981
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    Just Ro, My experience is the seroquil dosage needs to be increased over time. DW started on 25 mg in March 2020 and it has increased to 75 mg as over time. Her neurologist has authorized up to 100 mg and I am thinking that once the early sunsets begin I might need to go to the 100 mg dosage.
  • Just Ro
    Just Ro Member Posts: 43
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    Thank you, Joe C.  I am hoping we can get back to him not getting up in the middle of the night trying to steal my car and not seeing a pack of wild dogs in the front yard, among other things. Lol   Hope I get the call back from the Neurologist today.
  • harshedbuzz
    harshedbuzz Member Posts: 4,592
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    Stella Luna-

    For us, Seroquel was a miracle drug. It quieted the anxiety that drove dad's worst delusions and agitation allowing him an extra 17 months at home with my mom. He started out on 25mg at night and eventually went to 25mg twice daily. 

    While it didn't make the false beliefs go away, it did make them amenable to validation strategies. Dad was also quite stuck on the notion that mom was being unfaithful in the crudest possible terms and while that was hard to her to hear given his history as a feckless husband, imagine the pain he felt as a vulnerable person who didn't have the bandwidth to do anything about it. 

    Dad was also stuck on me losing $350K in selling his home at the beach calling me stupid and all manner of nasty things. This sucked on many levels, not the least that his poor planning and late diagnosis took over my life for 2 years. The leader of mom's IRL support group suggested validation and an apology. TBH, I thought she's lost her da**ed mind. But I tried it. Next time dad accused me of costing him $350K in bungling the sale of the MD house I said I could understand how upset that made him and apologized and promised not to ever sell one of his houses for less than they were worth again. He looked at me for s few seconds and and said "good" and changed the subject. 

    Dad died in his sleep about 7 weeks after going into a MCF. His death certificate states aspiration pneumonia related to Alzheimer's as primary cause of death based on an X-ray taken earlier in the day. But it could have been a cardiovascular event. There was no autopsy so I'll never know. It was still worth it since it gave him that extra time in his own home.
  • karwiy
    karwiy Member Posts: 24
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    My DH is currently taking 50 mg of Seroquel as well as Zoloft. He was doing well but the last 10 days or so, like clockwork, late afternoon/early evening he becomes delusional, frightened,  paranoid - not sure if coincides with sundowning or what. It never occurs in the morning or early afternoon. Like you, I'm a bit concerned about increasing the Seroquel (my husband is 86 and has congestive heart failure), but like others have said, I'm truly coming around to quality of life, not perpetuating his torment and a hellish nightmare. I appreciate all of you and your input.
  • Stella Luna
    Stella Luna Member Posts: 50
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    Thanks everyone for your valuable input.  I agree that quality of life is essential to survive this ordeal so I will continue to give my DH Seroquel and hope his delusions subside.

     Can you advise me on what to do when he refuses to take his medication? We argued more than an hour tonight until he finally took his pills.

  • Doityourselfer
    Doityourselfer Member Posts: 224
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    When my husband refuses his meds I cut them in half and place them in his food.  When he takes his meds, I place them in his mouth.  His hand to mouth coordination is off.
  • Joe C.
    Joe C. Member Posts: 981
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    When DW refuses to take her meds I simply walk away and come back a few minutes later, since she has no short term memory she does not remember my previous attempt. Sometime it takes multiple attempts but usually she will eventually just take the meds.
  • Stella Luna
    Stella Luna Member Posts: 50
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    Thank you Doityourselfer and Joe C. I will try both methods and see what works. His delusions are awful tonight!
  • Tutu mili
    Tutu mili Member Posts: 1
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    My DH has been diagnosed with amyloid angiopathy.  These are brain bleeds along with white matter. the pet scan revealed the presence of a pattern that can be seen Alzheimer disease.  My DH has been very delusional. He thought that I have been unfaithful but has now turned it into that I was raped. The doctors have put him on 25mg of Seroquel.  Im wondering how long does it take to take effect and does anyone have any ideal how I should answer him when he says I am unfaithful or been raped.  He also has severe headache from the amyloid angiopathy and takes blood pressure medicine but nothing seems to work.  Just wondering if anyone else has ideals for the severe headaches.

  • Joe C.
    Joe C. Member Posts: 981
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    Toto Milli, It take about 3 to 4 weeks for the seroquil to really start to work but in our case I started to see improvement after about 2 weeks.
  • Ernie123
    Ernie123 Member Posts: 152
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    Stella Luna: I would add a couple of  thoughts that based on my experience. First, I agree if your DH is having severe delusions, paranoia etc. the benefits of taking this type of medication outweigh the risks. Things will only get worse and become unmanageable. In our case, my DW about three years ago became very agitated and delusional. She didn’t recognize me at times, thought I was an intruder and would yell and hit me and try to force me from the house. Risperidone diminished those episodes but had to be increased as her condition progressed. She now lives in Memory Care. About a year ago despite the Risperidone her paranoia and delusions worsened significantly. She would hid in her closet in terror because “they”were coming to get her. She was inconsolable. In response her geriatric psychiatrist switched her to Olanzapine. The relief was immediate. Within two days she was calm, happy, no issues. Within the last month her agitation and paranoia were returning so her dose was increased in the morning. Now things are much better. So my advice based on our experience is to expect the need to adjust meds and perhaps switch to a different one. An experienced geriatrician would be helpful. Ours has forty years of experience and he says every dementia patient is different. What works with one won’t necessarily work with another. And sometimes meds have to be changed to find what works best.
  • Stella Luna
    Stella Luna Member Posts: 50
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    Ernie123, thank you for your advise. My DH has been on Seroquel for 4 weeks, his agitation is less but he still lives with a constant delusion that I am going out with other men. DH says he accepts it. I would like my DH to come back to reality! We are going to see his geriatrician on Monday, I will suggest a change of medication.

  • Ernie123
    Ernie123 Member Posts: 152
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    Stella Luna: I hope you appointment with the geriatrician yields results. As for the “ return to reality”, my experience with my DW is that the medication turns down the emotional response but she still has delusional thoughts. So she will calmly relate bizarre stories in a conversational tone, not yelling and agitated. She is now more easily distracted and diverted away from the paranoid thoughts. So my experience has been the meds help her greatly in how she feels but not in what she thinks. She is able to relax and sleep better as a result, which is great. She now participates in all the activities of the memory care unit instead of hiding in her room as she often did when her emotions of anxiety and fear were overwhelming. I definitely attribute her more comfortable state to her prescription of Olanzapine.
  • Stella Luna
    Stella Luna Member Posts: 50
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    After 4 weeks of taking Seroquel 50 mg a day, I got my husband  back! It is a miracle drug.

    Ernie123, you are right, the delusions are still present, but there is no emotional response and my DH can be distracted easier. His geriatríst told me we could switch to Olazapine if Seroquel stops working. We are also start seeing a Psychiatrist who specializes in behavioral issues due to AD.

    Thank you to all who encouraged me to continue taking Seroquel, the benefits may not last forever but there is peace for now. We were able to play golf today!

  • alfon
    alfon Member Posts: 1
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    My husband is also agitate most of the day he is taking 125 mg per day  and Trazadone at night but is not helping (early onset).
  • jfkoc
    jfkoc Member Posts: 3,943
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    My husband always said "everything in life is a trade-off". 

    Be certain to understand each drug's danger, it's side effects and possible interactions with other drugs including OTC. I used drugs.com  for this but there are other online sites.

  • Paris20
    Paris20 Member Posts: 502
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    The topic of antipsychotics is very important to me these days because my husband will probably be on Seroquel soon. Several months ago, after my husband had a particularly awful meltdown, the neurologist prescribed an antipsychotic. When I read the side effects I just couldn’t do it. I had given him one pill and it turned him into a zombie, sleeping all day and all night. I threw the meds away.

    That happened before the delusions set in. On a daily basis he asks when we’ll be calling his mother or his brother, both gone for years. He looks around and thinks we’re in a hotel. In some cases, he thinks we still work in his family’s hotel, sold decades ago. He wants to call repair people or agencies in a place we haven’t seen since 1972. He has not displayed any paranoia and has not wandered but he does not have his bearings. He doesn’t know where he is and I fear he might want to « go home» at some point. Worse, his rages are often out of control, verbally violent with vile language. I don’t want them to become physical.

  • Stella Luna
    Stella Luna Member Posts: 50
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    Paris 20,

    Please don’t wait until things are out of control. Ask your doctor about starting with a small dose and increase if agitation and delusions persist. My husband is taking 50 mg of Seroquel and he remains fairly active: we walk 2 miles a day, hit tennis and golf balls. For us the Seroquel has made a huge difference in our quality of life.

  • jfkoc
    jfkoc Member Posts: 3,943
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Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more