20 caregivers answer the antipsychotic question

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Anyone who reads this blog knows my position on inappropriately prescribing antipsychotic medications to people who live with dementia. Risperdal (risperidone) and Seroquel (quetiapine) robbed my mother of her ability to live her life as fully as she would have wished for her last four years. Their use on her was cruel, abusive and completely unnecessary. I’ve written extensively on this issue here.

Unfortunately, the biomedical model and the concept of challenging behaviours behind prescribing these medications is deeply entrenched; so is the profit motive for selling them. Advocating against their use is an uphill battle. The good news is we are making headway.

I was heartened when a US News article headlined: “Should antipsychotics be used for people with dementia?” was reposted on the popular Alzheimer caregiver Facebook page “TheALZTeam” where  over 90% of the commenters answered the headline question with a resounding “No!”

Here’s what caregivers said:

1 ) A pacifier, not a cure. ~ G.B

No, because antipsychotics do not cure rather than they serve to pacify people. After taking antipsychotics, the damaged brain becomes the real problem not dementia. People with dementia do not need antipsychotics. If they are used by health care staff, it means that caregivers do not understand people with whom they work and do not know how to take care of persons with dementia. This is the staff’s problem not those who have dementia or others diseases.

2 ) Make things worse, not better. ~ D.R.

No! No! No! Absolutely not! They actually made my husband psychotic and manic, they were given to make him sleep, the longer he was on them the worse he became and so they kept increasing the dose. Completely irresponsible, thankfully the doctor listened to me .

3) Legislate against them. ~ T.K.

The government should legislate that they cannot be used for people with dementia then the Doctors couldn’t be put under pressure by the nursing homes to prescribe them.

4) Train staff instead. ~ G.O.

They make them more susceptible to falls and confusion. If what is needed is more funding for training staff in behaviour modification and extra staff so they could take more time to placate residents displaying aggressive behaviour that’s what should happen, the money saved from not having to subsidise drugs would probably go a long way to funding these kinds of things.

5) They ended Mom’s life. ~ J.B

My mum passed away in March this year. She had frontal temporal lobe dementia and she had no quality of life. Strapped into a cloud chair, drugged to the eyeballs. I don’t know exactly what medications they had her on. But I feel that in the end it was them that ended her life. No autopsy was done.

6 ) Training and understanding would be more beneficial. ~ C.P.

Our mum has been diagnosed with Vascular now for over 3yrs, she has never in her life (she’s 88yrs old) taken any drugs, won’t even take a paracetamol! She is still at home and between us all (8 of us -4 live away – plus excellent carers) she is happy happy singing all day long, yes, she gets moods but they are managed with loving care, patience and understanding! I believe a lot of ppl with this illness are needlessly treated with drugs! better training and understanding of the disease would be far more beneficial than any drugs!

7) My mother deserved better. ~ J.M.

I wish they would never have to use these drugs! My poor mother was never psychotic but just because of dementia at 59, she was given these drugs. She deserved something better. These drugs did not help really. I saw how before and after taking them did not help her. Heartbreakingly, a hospice was given permission to paralyze my mother with worse drugs that took her life faster. She went back to God this year in January. She wasn’t even allowed fluids in an I.V. which simply caused dehydration. It was horrifying. I had no power over this though. God will surely give her justice. I pray for all who are suffering because of dementia and because of diseases that cause it.

8 ) I threw them in the bin. ~ K.A.

As a daughter who cared for her mother who was afflicted by this insidious disease, no medication helped. Aricept made her much worse, extremely depressed, psychotic hallucinations, absolutely apathetic and wanting to end it all. Psychotic drugs were prescribed by the doctor and I ended up throwing them in the bin. After weaning her off Aricept, we never used any medication. Nutrition, comfort, safety, love and understanding is the best medication.

9 ) I had them stopped. ~ K.S.B.

This happened to my mom! I would visit her & she was drooling out of her mouth & overly sedated. Once I was granted guardianship I had it stopped!! She is not taking any meds other than cholesterol pill & Vit. D. Also, I moved her to group home. It has been an amazing change for her well being & safety.

10 ) Look for another job. ~ J.N.

If you work someplace where someone in authority demands you contact the Dr to request medication for a “difficult” resident (even after you’ve attempted to educate them) it’s time to start looking for another job.

11) No respect for the elderly. ~ H.G.B

They prescribed these meds to my mother because they said she was aggressive & trying to care for other patients in the nursing home. I explained to the Dr that my mother wasn’t aggressive, she was Ornery & liked to play around. The reason she was trying to care for the other patients, she lost her father at the age of 14, her mother was a mess so she had to become a care giver at an early age. She also cared for my Great Grandparents & Grandparents. Also she worked in a nursing home for Many years. Her mind was back in the day of caring for others around her, especially the elderly. The Dr did not care, he said she needed this to control her behavior. My opinion, they want them to be Zombies so they are easier to care for. There is No Respect for the elderly in this country.

12 ) A nightmare. ~ S.D.O.

Dr prescribed anti-d as a sleeping pill for my mother who had Alzheimers .. Being me I tried them first …. suffered most of the side effects and got about 3 hrs sleep in 5 days . No way would I give them to mum , & thank God I tried them first ..it was a nightmare week for me on one dose.

13 ) Replace with love. ~ C.A.

My opinion is, as a wife of an Alz. Pt, sometimes they give these drugs to knock them down if they are at all “combative.” That may only happen because of the lack of training of the caregivers non training of people with Alz. Don’t give me the excuse that they have a lot of other people. Also, someone that has been labeled “Combative” it is like a scarlet letter. Showing Love can make a huge difference.

14 ) Hell nooo. ~ P.G.

Hell nooo..they were doing that to my husband i had to get a lawyer…sickening..it makes him worse ..i was his poa they weren’t supped to be giving him anything..he almost died than twice..they are in effective.

15 ) My dad got worse. ~ M.L.

My dad became psychotic and they sectioned him and put him on those meds , we lost custody , he has just got so much worse from them.

16 ) Avoid at all costs. ~ D.W

They will turn your parents onto a polypharmacy if you let them. Antidepressants and antipsychotics I would avoid at all costs.

17 ) Reduced my husband to a zombie. ~ E.S.

No no. My hubby’s mind already in a fog . Reduced him to a living zombie!

18 ) Of no help. ~ C.B.

So many people try to guilt you into using medication. They didn’t help my late Mom at all.

19 ) PLWD have enough struggles as it is. ~ D.G.

Not unless there is a proven positive effect. People with Alzheimer’s disease have enough struggles without introducing more!

20 ) No. They do more harm than good.

 

I agree with all of the caregivers above, and this is what I commented:

Antipsychotics should absolutely not be given to people who live with dementia unless all other options have been tried and have failed. Even then, they should only be given at the lowest possible dose for the shortest possible time. In addition to all the hands-on caregiver experiences and stories in the comments, there is overwhelming research evidence that these drugs are largely ineffective in people who live with dementia. Further, there is growing evidence that supports the many comments in this thread indicating that taking people off these medications improves their condition. Check the results of a landmark pan-Canadian study here.

The use of these medications must be curbed, and we must also ensure they aren’t replaced by others that are equally ineffective and even more dangerous.

Image credit: annete / 123RF Stock Photo

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4 Comments

  1. Pingback: “rabid-dog” granddaughter takes on “combative” physician

  2. Jessica Sanchez on

    Amazing Susan, I agree whole heartedly. My grandmother was diagnosed with Alzheimer’s early on. We put her in assisted living where she could thrive, as we wanted her to have people to watch over her and still have her own space. Was only a month when she fell & broke her arm. They didn’t call us, acted like they had no obligation to & so we took her out & brought her home until we could find another place that would be good for her. (Because of family stealing from my grandmother we had been thru court & have legal guardianship over grandma) The new place is where the drug war started. I had a fit when I arrived to visit & my grandma was a disaster. She mentioned to the Dr she was having anxiety. Instead of prescribing her a low dose benzos on an as needed basis they started her on Zoloft, Seraquel & other drugs. It was like my grandmother had end stage Alzheimer’s. She had no idea what was going on & didn’t know much of anything happeninh to her. It was like she was lost to us. I asked them to take her off all the meds. Some of them she had to be weaned off of & the Dr was combative telling me that her Alzheimer’s had progressed & this was what happens. I was furious at her. I still battled & demanded they take her off of EVERYTHING. I knew about weaning her off so the next few times I visited they had her on just a couple meds & claimed they were still weaning her off. More time passed & I was there again during numerous med moments & I was surprised to find they were STILL giving her the Zoloft, the seraquel & her aspirin. That sure explained why she was only “sort of” better. After numerous discussions with this woman I finally went at the Dr, this time snarling & angry like a rabid dog so zhe would have no doubt about how serious I was & demanded she get my grandmother off of all of it except her aspirin. I was MAD. Finally that ended & grandma got back to her normal self. We ended up moving her again because I felt they didn’t really care about my grandmother & that was probably where her anxiety was coming from. The “Side Effects” of all 8 meds they had her on was dementia, delusions, memory loss confusion & many other words describing those symptoms. Why would a Dr prescribe that for a patient who already had those problems? To top it off the Dr was more interested arguing the point of what a “side effect” was using “secondary effect” & some other crap, like changing the name would fix the problem. She treated me like a moron. Little did she know I was also in the medical field & worked for a Dr who treated me like a partner, he taught me way beyond the scope of my job, not because he expected me to practice medicine with him but because he wanted me to be knowledgeable. I went to pharmaceutical meetings with him & learned a whole lot about medication, I also have a natural curiosity that keeps me reading about all things medical. My grandmother’s Dr didn’t know the scope of what she was dealing with & just wanted us to obey her & drug my grandmother up so she wouldn’t be a “problem”. At that point I was just angry that it was even legal to prescribe one of these medications to an Alzheimer’s patient but prescribing 8 of them at once? I think my grandma would have died had we not been paying close attention to her. Now she is in a small assisted living community, only 16 people can live there & it is so new only half of it is full. She was the first to move in. She doesn’t have anxiety anymore & takes only her aspirin. Her Alzheimer’s has only slightly progressed & she is happy there. Paying close attention is key & questioning the Dr is critical when something isn’t right. Those medications are horrid & make the problems worse.

  3. A reasonable discussion without the conspiracy theories (by the drug companies) and the accusations of laziness (of the caregivers) would be more convincing. If you are a spouse and primary caregiver an alzheimers patient who wakes up every hour or so and wanders the halls moaning in agony, and you yourself are breaking down because you have no sleep night after night, a compassionate thing to to for both caregiver and receiver is to consider some kind of tranquilizer medication Your articles are very self righteous.

    • Dear janetsonntag,

      Thanks for your comment. If the situation you describe is your own, I’m sorry for your pain, and as I have said multiple times, if there is no alternative but sedation, then there is no alternative. The problem is there ARE often alternatives, and instead of putting them in place, sedation is employed for convenience.

      I have no idea where your suggestion of “conspiracy theories” comes from, and I don’t recall accusing caregivers of being lazy.

      I am the daughter of a mother who lived with dementia, and who was frequently up at a night. She was prescribed antipsychotics in small doses to help her and I both sleep. So I completely understand why some primary care partners turn to drugs in desperation. I know, because I’ve been in the same position.

      However, had I known then what I know now, I would have approached the issue differently. That said, the small dose she was on when I cared for her myself was not really problematic. What was problematic was the fact that when she was placed in a LTCF the doses were increased to the point where she was catatonic for four to five hours a day, and she began to fall and become injured as a result.

      I’m sorry you feel my articles are self-righteous; you certainly have a right to your opinion.

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