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Mom has vascular dementia and Alzheimer's. Dad has mobility issues. They moved to assisted living two weeks ago. Mom takes memantine, Aricept, and began taking Seroquel last week (dosage was upped today to 25mg twice daily from 25mg once daily). She is still yelling, angry, wants to leave, feels imprisoned, wants to drive her own car (which is not there). These behaviors began pre-ALF, but we were hoping being in ALF would provide her with activities, thus distracting her from constantly berating the family. The Dr. at the ALF has suggested taking away the Aricept, to move her out of the stage she is in. A family member, who is an M.D. specializing in geriatrics has suggested Respiradone instead of Seroquel (he has not examined my mom). I am aware that Respiradone and Seroquel are Black Box Labeled for dementia and the risks of both. Please let me know if you have experienced these issues and what medications or withholding of medications has been successful. Thank you.

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.
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Reply to Tryingmybest
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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.
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Zdarov Feb 9, 2020
A useful caveat, but no one here is purporting to have better advice than a doctor, the OP has only asked for observations, and a doctor’s recommendations are also largely based on observation of other patients. Any doctor that could be swayed to what was asked for wouldn’t be worth his/her salt - but they are asked *about* them.

Thanks for starting this thread, mrmoose, it’s helping me too so I can be more informed when speaking to mom’s doctors about what they suggest. She just got kicked out of an MC after 40 days (and investment of her money and my time & effort) with supposed oversight of how her current meds were working. They weren’t.
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My mother was given Risperidone and it worked miracles for her. Before Risperiodone, she had horrible anxiety, couldn't walk, cried all the time and could not have a conversation with you. When she started taking it, it was as if a switch was turned on and we had some of her back again. She had a very low dose. I knew all the warnings with it, but given the quality of life she was having, I felt the risks were worth it. After all, dementia has no positives so this was a tiny light for her and us. It didn't work for long though. After a few months, it wasn't as effective. I think you just have to try what there is out there and see what happens.
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Reply to Tiredandweary
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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.
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Reply to gemmab123
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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.
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cak2135 Feb 9, 2020
I've been on lexapro before; vitamin B12 is actually better for making the blues go away. Lexapro really did not do me any good. This was 10 years ago when I made the transition from a house to an apartment. My sister and her children lived right around the corner from me so I always had somebody to talk to and to hang with. My nephew and I each got the same digital cameras when we wanted to be the Paparazzi, taking pictures of everybody just being themselves, I joined a knitting group at the library; I made a go bag to take to the pool with me and put my magazines and iPod in there when I came out of swimming, and I made one for my niece. Inside hers was her own movie camera. We would hang out at this state park nearby, and we would all go to our apartments for a snooze. I took my niece to an arts and crafts class at the library and took her out to dinner at McDonald's. She would come around on her scooter on Saturdays, and me on my bicycle. She was scared to go down the hill but I went down with ease. My sister now lives in the Pocono Mountains in Pennsylvania, and I have new friends now. Friends are like Jello - there's always room for more. I visit my sister every now and then
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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.
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Reply to Loveuforever
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Zdarov Feb 9, 2020
This is a nice story (in the scheme of things), good to hear!
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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.
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Reply to DarleneRoy
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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.
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Reply to Babs75
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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.
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Zdarov Feb 9, 2020
What an interesting contribution, thanks. And thanks for bringing up the B vitamins, which help so many things including anxiety. I’ve used it myself and it worked.
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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
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Zdarov Feb 11, 2020
It’s so wonderful this worked out for you. Several others talk about it wearing off after a while - but two years of durability for you guys? You’ve apparently lost her since then, sorry for your loss.
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