Seroquel use in Alzheimer’s patients

Brokenhearted in Illinois

DH is very agitated and having hallucinations. Doc prescribed Seroquel. Researching Mayo Clinic said it should not be used for Alzheimer’s patients. I am confused as it is often recommended.

Thanks !

!

SSHarkey

Each person is individually treated. Many represented here are currently on the drug. Talk to your treating doctor. It can be a great help when necessary.

M1

Its such an old drug that it's not been researched in Alzheimer's specifically. A similar drug, Rexulti, was recently approved for Alzheimer's specifically and the drug manufacturers are charging an arm and a leg for it because it carries this FDA indication. I would have no qualms about using the older cheaper Seroquel, it's in the same family.

LisaLH

I'm glad this subject came up. My father is in memory care, stage 5 or 6, not really sure. He was put on Seroquel about 1 1/2 year ago for his sexual behavior. Too touchy feely but not aggressive. I've recently decided to move him a lot closer to me but it would be a nursing home. When I discussed with them about his meds they asked me if he had a mental illness because of the Seroquel. I explained the situation to them and they said they would need to wean him off because the state does not like patients taking it. The nursing home said, if needed, they would put him on something else. He is also on a depression/anxiety med and a hormone. My father just recently started having hallucinations so the Seroquel isn't helping with that.

harshedbuzz

@Brokenhearted in Illinois

Good on you for doing your homework around medication.

Despite the Black Box Warning, decisions around Seroquel should be made like any other medication decision. A doctor and patient (or proxy) must weigh the potential risks against the benefits. In the context of an elderly person with a terminal condition who is suffering with upsetting delusions and hallucinations without the cognition to process them. Rexulti, which has the dementia indication from the FDA, also carries a Black Box Warning. Rexulti retails for almost $2000/30-day supply. You can often get generic Seroquel for a $5 or $10 co-pay.

Seroquel allowed my mom to safely care for my dad at home at least 18 months longer than she would have otherwise. His delusions were painful for him and resulted in aggressive behavior which was dangerous for my mom and would have limited the options for placement.

TBH, I can't absolutely say for certain that my dad's death wasn't hastened by this medication. He was found unresponsive at a 10pm bed-check. Earlier that day, he did show some subtle signs of active dying. (he was conversational and telling me about my sister visiting and coming for him later-- she's been dead 25 years) The DON had ordered a feeding evaluation and the SLP was there when I arrived. He'd also ordered bloodwork and an X-ray which suggested aspiration pneumonia which is listed as a contributing cause of his death after Alzheimer's. But it could have been a heart attack or stroke.

HB

midge333

Seroquel has been magic for my DW. In January she had a sudden decline (charactersistic of vascular dementia) and became very angry, agitated and delusional. She was on the verge of tears 24/7. Our PCP added seroquel 25 mg twice a day and it helped a bit. Then PCP increased to 25 mg in AM and 50 mg before dinner and I got my wife back. She is happy again and the agitation is gone. She still has delusions but not as bad. I am very thankful for seroquel!

Honestly, if my DW dies a little earlier but has been happy and less delusional (agitated), that is a trade off I am willing to make. Plus, with seroquel I think I will be able to keep her at home which is something she told me she wanted soon after diagnosis.

Jeannielou

I am thankful for Seroquel. My DH is in early stage ALZ and was having terrible night terrors and halucinations. Seroquel has helped him tremendously. He has only been on it (25 mg) at bedtime for about a month. He still has vivid dreams but not Nightmares. I agree, the benefits outweigh the risks.

jfkoc

My husband too was on Seroquel per his Drs orders. I would do some serious balking if he was not allowed to remain under his own physician until the end.

Is there a reason why you are switching from memory car to nursing facility?

jsps139_

Like others, the Seroquel has been a huge blessing for my DH. He had hallucinations and delusions with a lot of frustration. That is all gone for now, and it worked the first day. His PCP prescribed 25mg at bedtime. However, I give it to him about 2pm to help with his sundowners. He falls asleep in his chair quite a bit, but he still sleeps great through the night and the sundowners isn’t near as bad. I would rather have him peacefully sleeping on and off all day instead if scared and worrying about everything. I also got worried after I read that the FDA did not approve for Alz patients.

Thanks M1 for clearing that up for us. You are so helpful!!

Jeannielou

https://alzconnected.org/discussion/comment/203352#Comment_203352

I agree 100%. I have noticed a big change in my DH since the Seroquel.

ImMaggieMae

There are over 400 drugs with FDA black box warnings. (Look them up, you’ll be surprised at some.) If a drug you or a LO are considering includes one, read the studies and research to decide whether the benefits outweigh any risks

harshedbuzz

https://alzconnected.org/discussion/comment/203348#Comment_203348

In a nursing home, there is typically a physician who oversees care for residents and those staying for rehab or recovery. It's much like when a person is hospitalized and a hospitalist oversees their care rather than their PCP.

If this was a response to Lisa, perhaps he's on Medicaid and in moving dad nearer to her she moved to him to a state where Medicaid does not fund MCFs. I know my state doesn't.

HB

M1

Many, many drugs have very established but "off-label" uses because they've been around since before stringent testing requirements were in place. This is a very good example but there are many more. The drug companies will now challenge some of those older uses in order to sell newer, more expensive products that do carry the FDA indication. But it is strictly a sales tactic.

CStrope

My DH has FTD (Semantic variant) and has delusions all day every day. He was prescribed Seroquel to be taken twice daily. I stopped giving it to him before bed because I felt it made him a little "loopy" and increased the times that he was urinating in odd places throughout the house. I do give it to him with his lunch. He is so agitated that if I don't give it to him he can't settle enough to go to sleep when it is bedtime 8 hours later. In fact, a couple of times when I was with him all day, I tried going without giving it to him and he actually was so wound up he refused to go to bed all night!!

hiya

Seroquel was/is a positive game changer for us. My thinking, right or wrong, is quality of their life and mine. I would rather have a calmer husband which in turn makes me more positive and able to cope than delusional, mission moving husband and feeling I can’t cope anymore. My husband is cognitively stage 5 so at this point, quality of possibly a shorter life is better than living with delusions, agitation and anxiety longer. It’s a personal choice and you have to do what is best for your partner and you.

Crkddy

Every case is different. For my DW, seroquel was prescribed for agitation and sleep. It seemed to help neither condition so we stopped it. Now using zoloft and ativan with good results.