We are considering putting mom on an anti-psychotic for hallucinations and delusions...any thoughts?

My mom has been on Seroquel for a couple of years. It takes the edge off. I think it is worth trying.

My husband had Lewy Body Dementia and I belonged to a caregivers support group. Nearly everyone in the group had tried Seroquel for their loved ones. (It is common to suggest that for LBD.) About half the group saw no benefit in it, and stopped. Once in a while a loved one would be worse with it and their caregivers stopped it. The other half found great benefit in it. It was the miracle drug for our household. Without it I doubt I would have been able to keep my husband home.

How would you know if your mother could benefit from it or not? Alas, there is no way to determine that in advance. You'd have to try it and see.

If you decide to try it, ask the doctor what benefits you can expect to see if it works. Ask how long it should be before these benefits show up. And then monitor the results carefully. Ask to have it discontinued if you don't see a benefit is a reasonable length of time.

I thought there was a new drug recently approved for paranoia in Parkinson's. Did I get that wrong?

My mom was on Seroquel. She started with 12.5mg a day about 4pm for sundowning. It was a miracle drug for her too. Over the course of three years the dosage increased to 75mg a day, still about 4pm, still once a day. Mom had Alzheimer's. Give it a try and if it doesn't seem to help check with doc and give something else a try.

This is straight from Drugs.com;
Important information
Never take Seroquel in larger amounts, or for longer than recommended by your doctor. High doses or long-term use can cause a serious movement disorder that may not be reversible. Symptoms of this disorder include tremors or other uncontrollable muscle movements.
Stop using Seroquel and call your doctor at once if you have the following symptoms: very stiff (rigid) muscles, high fever, sweating, confusion, fast or uneven heartbeats, tremors, uncontrolled muscle movements, feeling light-headed, blurred vision, eye pain, increased thirst and urination, excessive hunger, fruity breath odor, weakness, nausea and vomiting.

Seroquel is not approved for use in psychotic conditions related to dementia. It may increase the risk of death in older adults with dementia-related conditions.
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That said, you will have to weigh the risks against the benefits for your mom.
It didn't seem to do anything for my mother (95 yrs.-stage 6 Alz.)

Look up what Parkinson.org says about Seroquel. Here is a quote: "There are now three antipsychotic medications that are considered safe for people with PD. They cause limited worsening of Parkinsonian symptoms while treating hallucinations and delusions. These medications are pimavanersin (NuplazidTM), clozapine (Clozaril ®) and quetiapine (Seroquel ®)."

Seroquel didn't do anything to help with mom's behavior other than make her extremely sleepy
Rather than keep increasing the dosage we switched her to risperdal which has allowed her to stay feisty but more approachable

Dear vadvca,

My father had a terrible sensitivity to medications. It was not right for him. I feel terrible that so many of our parents have turned into lab rats. Doctors trying this and that and sometimes not knowing what works and what doesn't.

I hope you can find the right balance for your mom. I know the right meds can make a difference but its just getting there that is so hard sometimes.

Dad was given Seroquel while in hospice, due to a long period of violent hallucinations and living in complete terror. (He believed he was continually the victim of violent crime, and that violence was occurring all around him.) It probably did make him sleepy, or maybe it was the morphine hospice eventually added? Either way, I don't care -- any break from those hallucinations was a good thing, though I think sleep was his only real break. (At least it seemed he slept peacefully, though I can't be sure.)

The question is not ALF or medication. If she goes to and ALF (MC), and they find her disruptive, they will likely insist on medication.

The good news with Seroquel is that it doesn't take long to see the benefits. It's not like antidepressants.

Mother, who has vascular dementia was put on a low dose of risperdal for her paranoia and delusions/hallucinations. It worked quickly and well with no obvious side effects. Three years later they have taken her off it and she is fine without it. Sometimes it is only needed during certain stages of the disease.

Correct... Do not take Anti Psycotic Meds with the black box warning in high dosages. It could cause sudden death in people with dementia. I am currently trying to taper my husband down since he has Alzheimer's.

Dad was put on Olanzapine for delusions when he began to act on them. He followed a voice in mid winter up to a park and was waiting there until a neighbour noticed him. He doesn’t have Parkinson’s. The dose has been brought down to a minimum effective dose. On a higher dose he became very feeble, but the dose he’s on now is working. Whilst he still hears voices, especially if he’s upset about something, they are not as distressing to him as they were. It makes it possible to keep dad here with me. I could not have continued the way things were and it was escalating.

Nana, since dementia is an incurable condition, and since keeping a person with an incurable condition pain- and symptom-free is a desired end, many of us here can see the benefit to accepting the risks attendant in using a black box drug.

I hope that find a med or treatment that has an acceptable risk level for you and helps keep your husband out of terror and from harming himself or anyone else.

There ARE things worse than sudden death.
Harming or killing a loved one springs to mind.

Of course weigh the benefits vs negatives. I will say that my mother was put on Invega Sustenna for psychosis and the one side effect that effects mostly elderly women who are put on this drug is tardive dyskinesia, which she experienced. The doctor never warned us about this s/e. She has been off of the med for over 6 months and STILL has tremors (mouth, legs, hands). If I had known... But we must all make our own decisions. Best of luck!

Absolutely not - I gave my dad Seroquel and he turned into zombie mode. I have been giving him 2 Tbsp of organic extra virgin MCT coconut oil tasteless and odorless and putting in his water or you can put in shakes. He doesn’t hallucinate as much at all. Forget about drugs !!! They only mess your mind up more.  He has dementia and is 89 years old.

A different issue yet may it help.

My dad has dementia. He used to say something is wrong with his brain, and had paranoia. I have him on 2000mg Coconut Oil every day and use homeopathic oral sprays when needed, Liddell's ANX or Bach's Rescue Remedy (online or health food stores).
He responds very well to them and he's a big guy (6', 188 lbs).

Prayers that you be guided to whatever is best for your mum.

My mom has Alzheimer's/dementia and has had terrible delusions and hallucinations. Seroquel has been a good sent and has worked great for her. Make sure they start low dose and give it time. It took about 3 days before I saw a big difference.

Mom's doctor put her on a low dose of Seroquel at night before bed. It has been a miracle drug for her. She sleeps all night and is in a better mood all day. She used to cry all day. She doesn't do that anymore! Just don't read the label. Lol

My mom's geriatrician has some patients on up to 400mg Seroquel a day. Some need it, my mom was not one of them, her dose maxed at 75mg a day.

There was always the option to discontinue meds. I chose not to. Mom's behaviors were manageable with the meds she was taking. If it isn't broken don't try to fix it, especially if it was going to effect mom negatively.

It definitely worked for my mother- far fewer hallucinations (and they were nicer- fluffy cats visiting her) and it definitely took the edge of her paranoia. But as it doesn’t work for everyone, monitor her behavior carefully. Best of luck. Oh- and we didn’t notice it affecting her Parkinson’s.

yes you should .my husband was like your mother and about a month
being on Risperidone his hallucinations stop. i thought he was doing so well i started to
take him off of them. with in one or two days he was having hallucinations again.Put him right back on them.

My Mom's mind just would not rest. Drs. said I could give her Tylenol PM as I suggested I just wanted her to go into a deep sleep with no harm as I really am against the anti-psychotic drugs. So far just giving her one with her dinner time meds has her sleeping all night and seemingly refreshed in the morning. Its also still winter here in Indiana so heavier drapes are at her windows not letting in much sunlight. I've read lack of sun causes certain symptoms as well. Good Luck.

Hi VADCVA, my elderly mother also has Parkinsons. She also is having lots and lots of hallucinations. People, animals, bushes in her room, etc. Off and on. Hit and miss. We are not going down the drug road (yet) as she still realizes they are from her Parkinsons. and she hasn't shown any paranoid behavior. Nuplazid is the latest thing which is supposed to a much better drug. Have they recommended this one at all? Might want to look into it a little. It is expensive, but there is a program the Drs can share with you where they can get it pretty cheap for you. I hear really good things about it and have been told if the hallucinations become bothersome that would be the next step. I have always heard the seroquel increases risk in elderly ESPECIALLY if they have any type of dementia/ plus, I have heard of the mood swings, etc. from the seroquel. I would approach that one very cautiously.

Seroquel was a life-saver for us. My mother would make us sit with her and she told us stories about what was going on with her - thinking she was on a cruise (not so bad) to thinking that my sister and I were part of an illicit drug gang (awful). My sister took the brunt of it all and still has what I think could be PTSD from the whole thing. I'd give it a try to see if it works for you.

My mom has been on Seroquel for 9 months, but only 5 months completely. When she first started it did make her so sleepy, but also helped her to sleep the night. At first delusions were better, but not gone. Then she took the drug sporadically or not at all and things got really bad with profound hallucinations that caused her to wander. 
Now her drugs are administered and she is on the same original dose, 25 mg am, 50 mg pm. She has few delusions and few to no hallucinations. She does not seem so sleepy now. She has more muscle and leg cramps, but not sure there is a connection because she takes other meds too. She has greatly improved on the Seroquel and aricept.

Several yrs ago, my Mom's neurology Nurse Practitioner recommended Depakote for this-- a very small dose. Started with 250mg /d. That seemed to make her more unsteady on her feet. So we decreased it to 125/d. Stopped the hallucinations and no side effects.

I have two parents with Alzheimer’s and my mom was given that drug for mild hallucinations and ended up having a mini stroke while building up the dosage. After ending up in the ER for this “ complication” her neurologist had her discontinue it. Now the nursing home wants to try it with my dad. He has paranoia and delusional thoughts and has some other forms of dementia along with Alzheimer’s so who knows if it will help him. I agree with another poster that it feels like my parents are being used as lab rats or test dummies to further research at times. Since we all know that at present there is little hope for doing much to address making things better for those suffering from this horrendous disease, I’m at the point of letting go of worrying about the side effects and am leaning more towards trying ANYTHING that may have a chance to take away some of the awful stuff ( hallucinations, violent behavior, paranoia) that come along with the disease. For me it helps to know that death is the merciful end of this journey and IF a medication cut the Alzheimer’s journey short by accident, then maybe it ended up saving the afflicted one some sort of dignity. Of course I’m at the point of grasping at straws because my folks are entering the last stage of this disease.

VADCVA,

I would research all the current medications your mother is taking. Simply google the name of the drug with a keyword of Hallucinations OR agitation OR confusion.

In my mother case, documented as not having Dementia and now known to have Sundowners after hospital visits during and after a UTI, we found the following drugs to show a propensity of Agitation, Confusion, and or Hallucinations:

Zofran
Pepsid
Toprol-XL
Isosorbide
Pravastatin

I switched TorpolXL to 1/2 dose if old metoprolol
Stopped Isosorbide per MD
Stopped Zofran
Stopped Pepcid
Stopped all statins.

Doctors argued over the statins, but she is 86 years old, so I felt that the chance the statins being partially to blame it was worth the chance.  We also ADDED Mirtazapine which has helped her sleep and got her weight up from 82# to 100 in eight weeks. Also I found she is hydrating much more, which I also Questioned Mild Renal Impairment, as her old doctor has been watching this since 2001.

Within five days Mom was thanking me for stopping the madness she was experiencing! I will say that six weeks later she said she was occasionally experiencing vivid dreams so we switched the Aricept to morning dose and then eight weeks later tapered her off the medication, as she does not have dementia but does have Vascular Disease.

Coincidentally we also took her off Diltiaziem (also on the list of causing confusion) and added a night time dose of Procardia XL at night and moved the Aspirin to nighttime dose as they think her BP was spiking in her sleep causing micro strokes (TIA).  

Seroquel is not approved by the FDA for Dementia patients!

MIL was hospitalized last summer with extreme hallucinations exacerbated by her lorazepam abuse. Off lorazepam, she was given seroquel. She takes a low dose once a day at bedtime. She has had no more hallucinations, no more anxiety issues, and is sleeping much better. We are monitoring closely but no side effects are apparent. We were to the point of placing her in a facility but now she is getting dressed most days and engaging with the real world. 

I would consult with doctors who are familiar with treating patients like your mother, probably a geriatric psychiatrist and listen to their recommendations. Mental distress is no less painful than physical pain, imo. I'd treat it accordingly. I'd keep in mind that sometimes dementia patients are prescribed medication off label and and there are reasons for that. I'd discuss it with her doctor and be proactive in helping treat her symptoms.