Can anyone tell me their experience with dementia drugs and antipsychotics? Mom is angry, yelling and wants out of assisted living.

My mom has vascular dementia and bc of an unstageable pressure ulcer on her coccyx requires an SP catheter. She is highly susceptible to UTIs which cause delirium and combative behaviors preventing treatment she needs (ADLs, meds wound care). She is in a SNF that is highly rated by Medicare and US News. After her Lexapro was abruptly stopped bc of a mixup after a hospital stay, a physician assistant said her dementia was getting worse, started her on Depakote, then added Seroquel until she was a passed out in bed all the time. This is the person responsible for prescribing all psych meds at the SNF. There was no documentation for the PA to make these statements. My mom’s antidepressant was stopped suddenly and she was probably experiencing side effects from that. A psychiatrist came in and took mom off all those meds and prescribed .5 mg of Ativan up to 4x a days as needed. The SNF has continued to struggle with treating my mom. She has been back in the hospital for more UTIs and refusing care. Doctors at the hospital say she is way over sedated. Now the SNF won’t let her come back. I’m frightened by the black box warnings of antipsychotics but that is the only condition SNF would consider acceptable is for her to be massively drugged. I’m begging for help at the hospital and I need to discuss her case with the psychiatrist there. So far I’ve run into many obstacles getting her seen by a geriatric psychiatrist. Maybe now that she has nowhere to be discharged to, her meds will be better addressed.

I had meant to come back to this thread again, glad to receive notice of new replies by email. Mom’s been on seroquel for about 8 months, cranked up the amount a couple times, and it’s worked pretty well but we need to add something. Have a new geripsych who thinks we should try depakote (divalproex) at initial dose. It’s an anti-epileptic and she’s seen good results with it. Wish us luck.
Mom started taking zyprexa in January and had a profound loss of ability to lift and move legs, and stand upright. Someone mentioned the same above with that drug. Just an observation.

@Gracie61 - My mom was on the 25 mg once a day for about a week and we saw zero change. When she went to 25 mg twice a day, it took a little less than a week for us to see a change, but it was a big change.

Glad the Seroquel is working. Mother was diagnosed with vascular dementia and had developed paranoia and delusions, Respiradone (lowest dose) worked for those and calmed her down with no noticeable side effects. A little later they gave her an antidepressant which helped her to be more content. Sadly in the last 6 months or so of her life nothing seemed to help her mood. Wishing you and your parents the best.

Just wanted to give an update. My mom started taking Seroquel about two weeks ago and it is working. She is still asking when she will be able to leave, but she is no longer angry about anything. She smiles more and is even laughing again. I know it's not going to last forever, but it is a huge improvement for her and everyone around her. Thank you all for your input and best of luck on your journeys.

I just asked basically the same question......having issues with mom as well. There are some great answers here and will help me to make an informed decision.
Hope you find the right balance to help with mom. Best wishes.

We removed all memory meds as they had an adverse effect on my mom. They would make her crazy, like wanting to jump out of a moving car. Once we removed them, her behavior improved. But she is still agitated so we give her a low dose of Seroquel to calm her

What our family found that helped: not the medication. Whether our mother had this or not seemed to make little difference. What was important was those few minutes of attention the LPN gave her when she came to administer the meds. In the end we elected to do placebos instead of drugs, and have these brought by the LPNs. Who then would say "How beautiful you look today!" That alleviated the depression and the anxiety more than all those toxic drugs we had tried.

My husband had dementia and when he was out on actively and other dementia med he got worse in every way. I was caring for him at home so I took it away and he improved greatly. He was more alert and the symptoms the meds was given to make better did get better when he no longer took them. Drugs of any kind may react differently with every person so you have to be aware if its for better or worse. Pay attention to how things change when new meds are given or removed

My sister has Lewy body dementia, depression, and bi-polar. She was at AL last year for 4 months before agitation and wanting to get out of the facility. Over a period of 6 weeks, my sister had three episodes of combative-actually hitting staff and also trying to leave the building-each time facility called 911 and sent her to the ER. Sister was on Aricept, Fluoxetine, Sinemet and BP meds. ER gave her injections of Haldol and sent her back to facility. Facility was recommending I take my sister to Psychiatric facility for meds evaluation.
I knew this would be bad for my sister-being isolated and not understanding what was going on or why. I was hesitant to do what they wanted until the third trip to ER, I felt we were never going to find a solution going to the ER every other week. I finally agree to in hospital psychiatric/medical evaluation. three weeks later she was finally released after being in restraints for all but 5 days at the end before current community would take her with anger issues and all. In spite of hospital stay and new facility-I think my sister did well considering.-except facility assessment person was doing her in person assessment of my sister on the worst day ever-spitting, biting, kicking hospital staff-we were told facility would only accept her at maximum care at 9K a month. We had been told at other communities potential placement of people with "behaviors" is not acceptable. So we were stuck going with the only place we could find-which has several angry people-women and men in the same area. Anyway-hospital evaluation removed the Aricept, the Parkinson's medication, Sinemet, and added Zyprexa instead. She continues to take Prozac for depression and Aricept. BP meds.
Facility tells me that my sister cries most days-according to them-uncontrollably-I have never seen this myself. Whimpering for a minute or so but that is it. After multiple complaints of crying from staff, Facility increased Prozac to attempt to address crying most days-this has not helped and they since reduced the dose.
After a few months of the Zyprexa my sister was horribly bent over and now in a wheel chair. Dr. agrees to reduce the Zyprexa and now my sister has much better posture. Dr. gave me a list of meds they do not like/want to use and Zyprexa was on the list. But anger now seems to be back in the mix. I take my sister to outside neurology doctor who is willing to try something else but will take time to figure out a good balance. Crossing my fingers we do not end up back in the hospital.
We have now been declined new placement at other facility at least 3 times due to crying, and now a report on her nursing facility notes that she cussed at staff and residents. Now we have a behavior felony on her record-We are stuck in this horrible place where my sister has been injured 4 times, and unclean on a number of other occasions, and had a horrible case of scabies, before I brought to the attention of staff. Sister has lost 20 pounds since living in this place-also food is nasty there.
I have been told numerous times since there is no cure for this disease all they can do is attempt to treat the symptoms-trying to minimize drug side effects and making people sleep all the time. Sorry but I do not have any miracles to offer on medications or treatments for anger issues that don't screw up other things at the same time.

SO SORRY that I took so long to answer- my LO is doing quite well on 1.) MIRTAZAPINE (Remeron), 15.mg, 2.) Buspirone, 10, and 3.) Melatonin 3mg.

The dosages are fluid, and she’s seen by the psychiatric PA once or twice a month.

She’s still not easy to manage, but much more herself, more comfortable, and better sleep/wake cycles.

Hope this is helpful to someone.

My husband did not do well on the anti-dementia meds such as Aricept and if you research it further, there is little proof it helps at all. We took him off Serioquel and tried Lexapro. He did much better and we then discontinued the Aricept. Many side effects I did not realize from Aricept caused him to improve a lot. Many of the Seroquel medications (anti-psychotics) have very serious side effects:

Elderly patients with dementia-related psychosis treated with antipsychotic drugs are at an increased risk of death. Quetiapine fumarate is not approved for the treatment of patients with dementia-related psychosis or for patients under 10 years of age.  So you see it's not approved for such use but doctors give it anyway?!!!! Well I had the fortunate opportunity to send my husband to a geriatric 55+ Inpatient tharapy and Rehab. They try to wean them off certain meds and replace with others until they figure out what stabilizes their mood. I learned there is a difference in mood stabilizer and anti-psychotic meds. They also must figure out the proper dosing for each patient. It takes time and some trial and error. But in five weeks he was his old self again. I could not believe how much better he was after being at the place. I also used DRUGS.COM ALL THE TIME. I made sure I knew what he was taking and why, possible side effects etc. In Texas, every six months the state law requires the Nursing Home stop giving psychotropic drugs to see how the patient does without the medication. The law is to protect the patient from becoming over medicated so the staff can easily manage them which used to happen a lot. BUT, they don't tell you this or when they do it. There is no "weaning them off" either. Just stop it cold turkey. I finally knew why he would be so normal and then "BOOM"!! He was psychotic again. Luckily my neighbor was a pharmacist up
at husbands home and I finally got her to tell me why the home kept taking him off important medications. The law may be well meaning but it only hurt the patient and close family members. Too
much of a given drug can cause a drop in sodium levels in the blood stream and your loved one starts having seizures because low sodium levels causes the brain to seize. It's terrible to watch this happen. So I took my husband to the ER every time until they went away. We MUST ADVOCATE FOR OUR OWN FAMILY MEMBERS. NO ONE ELSE DO YOU WW away. But then they return AND I WOULD CHECK AND
I ALSO RECOMMEND THE Bar KNOWN As THE authority on all dementia

"THE 36-HIUR DAY" by Nancy Mace and Peter Rabins.

This book was given to me by my sister who works for the Alzheimer's Association and it it a treasure full of great tips, advice and what to do's!;

Risperidone gave me my mother back. The anger and fear were under control and we actually brought her home from a nursing home. My sister and I took care of her at home and we had two very fulfilling years with her. Her doctor said she was "blissfully unaware."

We could understand her, we had fun, we danced and sang and did yard work and whistled and marched around the yard to John Phillip Sousa music.

Risperidone did that for us.

Best of luck to you and your family ... the anger is so hard to deal with. God Bless!

Susan

Hi Mrmoose, my mother also has vascular dementia, I had to move her into assisted living about 3 years ago. My experience was very much the same as what your going through at the moment. My mother was let's just say not the nice's person. I never felt so lost on how I could help her, this wasn't my mom. I was constantly called to help calm my mother down or when she wasn't co-operative about getting daily care. She even went as far as to call 911 to say she has been kidnapped. Funny now but at the time not so much. I also was daily berated. She was seen by a psychiatrist, they played with her meds constantly all the same as above. Nothing really took hold, her anger lasted almost 1 1/2 years, still has her moments. She doesn't want to do anything, activities, sometimes eat, take her medication, allow anyone to touch her to help with daily care items. I found that sometimes she became seriously aggressive when she had a urinary tract infection. I would have your mom checked for that to rule that out. Every time I say the facilities name on my phone I would have that OMG what now moment. For her it was the progression of the disease that calmed her down. She still a hard ass, and still refuses meds, and care on occasion. Seemed like overnight she lost the ability to use her legs. She was in a wheelchair but could stand and transport to the chair with aid. Then one day that ability was gone. Now she stays in bed all day. Will not get out. So here is my advice to you. Take it from a gal that has lived your nightmare. Accept what is, and whats going to happen. Settle in the fact that you can not change it, nor are you responsible for it happening. What you can do is be there, stay calm, see the humour in everyday. Cry if you have to, share your stories of what you're going through with people you trust. Surround yourself with a support system. This will help you get through the tough times. Know that it will get easier. Never better, just easier.

Your question should be directed to two specialists - a neurologist and a psychiatrist. Your mother is yelling due to a broken brain. That's the only way she knows how to communicate. No way should she leave the AL.

Aricept lasted about 7months. They added namenda the agitation increased. Took him off everything and the doctor ordered soloft to start. 50mgin the am 50mg at night. Been working for 5 months. Good luck

Perhaps your best answer should come from a geriatric psychiatrist. My LO has been taking Zyprexa 2.5mg as needed for about two years for agitation and psychosis. The first dose was outstanding, but even as a “as needed basis” it became somewhat less effective; than the first time. I think that this is probably true of all medications. Also, sometimes you have to try different medications and/or different doses to find the “right” one. They all have after-effects that are different for each person. If I did not have to use it I would not, but I cannot.

My experience with my husband with dementia is that he was better without the meds.

Sounds like my Moms condition before she passed. The dementia drugs don't work unless starting very early. The Seroquel helped but it takes time and increasing the doses. Vatican helped my mom when she was extremely agitated

After having two family members with dementia, I have a different take. We tried everything and in the end, nothing really helped. In addition every med has possible side effects, from nauseousness to suicidal thoughts. In the end we did away with everything. Yes, we still see episodes of anxiety and depression, but no worse when they were on the drugs. We deal with it other ways (soothing music, car rides, and mostly giving the person a LOT of loving attention as often as we can.

As dementia increases, every attempt to give meds seems to cause more anxiety, both for the person with dementia and for those administering it, whether it's a family member or an aide. We now has a prescribed B vitamin to be used as a placebo in place of the anti-anxiety meds, and it seems to work as well, that is, not always 100% but seems helpful for the person.

Most dementia care experts seem to say, the fewer drugs the better. Read Dr. Tia Powell's wonderful Dementia Reimagined. Or Dr. Peter Whitehouse, who helped develop on of the early dementia drugs at Johns Hopkins and now encourages using as little in the way of any meds as we can.

We tried so many drugs for my husband with Parkinson's and Parkinson's related dementia. After three stints in a psychiatric ward, the neurologist gave up on Seroquel and reluctantly turned to clozapine. This drug worked miracles. John is no longer abusive and hopefully the trips to the ER with another round in a psych ward are over. The drug requires weekly blood draws, but it is so worth it! On the downside, he is more aware of just how awful his situation is and he asked me yesterday if he has any purpose any more. Heartbreaking. He is also taking Nuplazid, which keeps the delusions at bay. Good luck in your quest for sanity.

Didn’t have good luck, they gave my mother massive diarrhea, but this is how her system is so when they suggest a new medication I tell them I will try it, but if she gets diarrhea it ends, not putting up with that !

My 82 year old mother has Alz, she fell and broke her hip in 2016 and that is when it got really bad. First her dr put her on lexapro for depression, then a few months later he put her on zyprexa. She was paranoid, accusing my dad of being with other women anytime he wasn’t in the house, would fight and argue with her caregivers, very belligerent and angry. When she started on the zyprexa, her behavior changed back to almost her normal personality. (It also was to help her with her sleep difficulty, but we still have to give her melatonin at night for that.) Needless to say, after almost 4 years, and deep into her journey with this disease, she is still at home with dad (his choice) as her primary caregiver and various helpers throughout the day. I agree with Tiredandweary, there are risks with any drug, but as much as I hate her taking these meds, I don’t know where we would be without them. About 2 years ago I tried weaning her off her lexapro, and that lasted 1 week. Her attitude, disposition, behavior all changed rapidly. I won’t mess with her meds again. She still has some really bad days but for now the good days are outnumbering them.

I’m presently a caregiver for someone who has been in a very good AL near my home for a year and a half, and I think from my ongoing experiences there, people who enter AL happily and comfortably and without complaint are the RARE exception to the rule, if for no other reason than the fact that there is often a sense of adjustment/ownership/familiarity of the living arrangement previous to moving to the AL, and frequently a stark and unforeseen (by the resident) contrast to what was happening previously.

My LO was taking an antidepressant for several months BEFORE her admittance, and within a couple months, a visit with a very skilled psychiatric consultant brought about a change in medications that has given her even more peace and relief from anxiety.

Our frequent visits are much more joyful than earlier on, and she is less driven by her previous desire to “go home”.

My husband had to be put on Risperdal even with Xanax and Neurontin and it was the only way I was able to keep him at home. We had to keep increasing the dose to a high dose until he was manageable. He did have side affects but I believe because of the high dose. After 6 months I was able to start lowering the dose, he is now still on 2 mg. He is much more settled and laughs and engages with us more, but he still gets agitated and yells around especially during bathing and afternoon. He started his decline at about 6 years ago and he is only 70. Awful. He is not walking now, but a year ago he was still jogging down the hall pounding on the walls. He was very active and athletic and it unfortunately has taken quite a bit of calming medicines to settle him. Otherwise, I was told by experts that I spoke with it would have been very difficult to place him and impossible to keep him at home. He is getting excellent care at home from myself and two other private pay health aids. In addition, he is on hospice, but very much loved and as comfortable as he can be with this terrible disease.

My dad took Risperidone for a short while and it worked great for him but there were side effects and he had to go off of it. Too bad. He has been on Seroquel for a few years and they just have to keep upping the dosage. He started at 1 -25mg tablet per day and is now up to 4 - 25mg tablets per day.

I've worked in psychiatry and mental health for years. Different people respond very differently to the same drugs. Different benefits, different side effects, etc. And this is not even taking into account the various combinations of meds and varying dosages.

You could get 100 responses here and none of them may resemble your future observations. You may even be persuaded to push for what turns out to be the wrong choice, just by seeing others' successes or horror stories.

Best to go with docs' advice.

My mom has vascular and Alz dementia. She was an anxious, viciously angry, and paranoid. A geriatric psychiatrist doubled her lexapro and put her on a tiny dose of resperidone. It's made a huge difference, and I feel like I can put her in MC in the best possible state of mind. When I talked to her doctor about the black box issue, he explained to me that psychotic behavior can upset some people and not effect others. It's a quality of life thing. She still worries about stuff... and is depressed..but is no longer freaking herself out. We may be able to take her off it once she has people around (moving her to ALMC next week) --she has been living by herself. Of course each person is different! best wishes.

🤷‍♀️

My Mom too was put on Respiradone and it made all the difference in the world. It has drastically reduced her anxiety, paranoia and her anger. Her dose is low as well. Moms dementia is mild. She has suffered from untreated mental health issues throughout her adult years so I am not sure if that makes a difference. All I know is my Moms quality of life is much better with this medication. I wish she could have experienced this relief years ago but late is better than never. I hope she continues to do well with it. As for risks, it was pretty risky for Mom when she was filled with rage, being non compliant with safety issues and ended up with a broken hip.