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CarolC75 Asked May 2016

Does anyone have experience with Seroquel for dementia and Alzheimer?

My husband has dementia/Alzheimers and has been getting worse since putting him into respite. He is suspicious, very confused about most everything. I've been doing a trial at an AL and he says terrible things when I pick him up. Said it was a prison and there are killers in there. Said there were bodies buried in the yard!
Since only going there two times, he now doesn't want to take his medications which is only something for heartburn and a .50 Alprazalam (Xanax). Today he refused even his vitamins and said I was in cahoots with the killers and he's never not trusted me.
Then he left the house and I thought he was in the bathroom. I drove all over trying to find him but was then called by another AL in the area and I went and picked him up. They found him wandering around in their yard. It was about half mile away...he walked that far! After that he was fine and took his meds.
Now the doctor has increased his Xanax but said the next step is to put him on Seroquel for the paranoid, restless and agitated behaviors. Are there side effects that might make him worse? I hate to get into new medications because you never know what to expect.
I'm trying to get him into the AL and they won't take him anymore unless he is on something for the restlessness because he's too disruptive and even miserable himself.
Hope some of you have had experience with this class of meds and have some good reports.

Thanks, Carol

CarolC75 May 2016
Thanks everyone for the excellent responses. I do have an appointment with a medical doctor who specializes in memory care called On-Site for Seniors and Memory Clinic. She actually does visits in the AL and will probably prescribe better medications than the GP.
I understand from all your comments that as usual, everyone is different. Now I'm wondering if he should have the Seroquel here at home before he is admitted into the AL or just wait till he's there to try it? Not sure what the new doc will want me to do.
I too have noticed that some people are medicated to the point of practically being vegetables. I certainly don't want that for my husband. But he's also losing his fun and friendly side because he's so paranoid about people. He seems to be in fear and so worried about killers, robbers and all sorts of scary stuff that he thinks is going on around us. So maybe the medication is the lesser of two evils.
Alzheimers is such a horrible disease...it's just wrecked our lives.

Thanks again for your thoughtful and informative answers. It will help me consider my options and also what to look for when he most likely will go on Seroquel.

Sunnygirl1 May 2016
You are right to be curious and investigate the medications they prescribe, but I would also be very concerned about his wandering. You say that he left one place and was found in another place's front yard a half mile a way? I would discuss this with his doctor. I would explore a Secure Memory facility, since most regular assisted living facilities are not equipped to keep people fully monitored and detained in the facility. The one that my cousin was in required that we retain a private person to stay with her during the time their doors were not locked. So, we had to relocate her, since the costs of that was not feasible. I would make sure they are aware of his wandering so they can take care of him properly, even if it's for a few hours a day.

I have read many things about Seroquel and most of them were positive. There are risks, but I would discuss them with his doctors. When the patient is having a very difficult time, you have to weigh the benefits. I've never known of anyone taking it except a little at bedtime.

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ginamageo May 2016
When my Mother was under my sisters care 8 yrs ago my sister had her on Seroquel it was a nightmare to see my Mother lethargic and very childlike since i took over 7 years ago i did my research to get her off any pharmaceutical drug except her thyroid medicine my Mother is 95 now and i have her on Cbd marijuana chocolate bars for her it was the best thing for me peace of mind not seeing her lethargic she has the will to live eats healthy and calms any anxiety no thc so not a high in the head but more of a body high to calm the anxiety and able to relax without looking like a zombie. Im just saying do your research i was very reluctant to give it to her but now very supportive of medical marijuana ive also read in Israel they do this in nursing homes and the difference between using psychotic drugs and marijuana is amazing to see them have the will to live then to have elders laying or sitting in bed looking like there is no use for them. I thought we were going to lose her but after starting her on Cbd its been a huge turn around to see her appetite come back and laughing again and engaging in conversation. That was my experience with seroquel but please do all research before you decide to put your parent on any medicine.

jeannegibbs May 2016
Seroquel was our first miracle drug. Without it I couldn't have kept my husband at home.

Other people in my caregiver support group found it made no difference for their loved ones. Still others had to stop because of side effects. (When they discontinued the drug the side effects stopped -- no lasting damage.)

In my husband's case, we had about a 20 minute window to get him into bed after he took it. I only gave it when he was ready for bed! Other caregivers reported that they could give low doses in the daytime. That didn't work for us, but the once-a-day at night was enough to see him through the next day.

Seroquel is typically started at a very low dose. My husband started at 25 mg and gradually increased to 100 mg (which is still a low dose) and remained at that level for nearly 9 years.

My personal (NOT expert) advice is to try it with your husband, starting at a very low dose. If he tolerates the initial low dose, follow the doctor's advice for increasing it to a therapeutic level. If it makes him groggy/drunk-like, give it only right before bed. If there are other bad side effects tell the doctor. If it doesn't seem to help at all, tell the doctor.

Individual reactions vary widely. The only way to know if it will work for someone is to try it.

MsMadge May 2016
While I would never recommend any med especially this class of anti-psychotics I did reluctantly begin my 92 year old mother on a very tiny dose of seroquel after her move to memory care - she was beside herself with fear and was up all night looking for me -

I hate using a drug which comes with an fda back label warning and puts her at risk for yet another fall but her anxiety and paranoia were apt to give her a heart attack anyway

She has been on it for 60 days and it has taken some of the edge off but she is still scared to be alone and was crying when I got to her room tonight - she is a bit calmer and her sense of humor comes through more again but as I understand it the dosage typical has to be increased and I doubt I will agree to that

It does put her to sleep so be prepared for him to fall asleep in his soup if not given at the right time

As I witness each time I visit my mom now, a lot of memory care residents are on meds but based on my reading drugs like Xanax are short lived and typically are a last resort for dementia -

A neurologist or a psychiatrist not a GP should be prescribing and monitoring - good luck

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