When I posted a link to 20 caregivers answer the antipsychotic question on a FB caregiver forum and asked caregivers what they thought, I became the subject of a vicious attack from a handful of forum members. “Fuck her and her judgmental ass,” one person wrote.
I was saddened but not surprised by the response. People who feel threatened, overwhelmed and/or afraid often react aggressively. Ironically, that’s one of the main reasons people living with dementia get labeled and sedated. Some family caregivers have no choice but to give their loved ones antipsychotics, and many others believe the misinformation told to them by various sources. I know. I’ve been there.
And, truth be told, when given in the lowest possible doses, for the shortest possible time, these medications may provide temporary relief in untenable situations for some people, without too many adverse side effects. But that’s not what happened with my mom, and it’s not what happens with tens of thousands of others, particularly in long-term care facilities where the inappropriate use of antipsychotics remains a huge problem despite efforts to stop it.
For example, Jessica S. shared her story in a comment on the same blog post:
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, Seroquel & 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 happening 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 Seroquel & her aspirin. That sure explained why she was only “sort of” better.
After numerous discussions I finally went at the Dr, this time snarling & angry like a rabid dog so she 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 versus a “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 & 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.
I laughed out loud where Jessica says “& the Dr was combative.” You rock Jessica, I thought. A woman after my own heart.
Why don’t we throw all these destructive labels right back in the faces of the people who insist on applying them to people who live with dementia, and likewise call them “resistant, combative and aggressive” when they don’t respond in the way we want?
You go Jessica.
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My Alzheimer's Story 
I LOVE it Susan!!! Thank you for sharing our story!!! It has been a long haul with my grandma & the things people have done to her didn’t even begin with the Dr.
Family members have manipulated her & stole from her, her first conservator (grandson in law) took grandma & his family on a Disneyland vacation on grandma’s dime & tried to pay his wife (our cousin V) some crazy expensive amount for caring for our (and V’s) grandma on the trip. I say tried because we caught it & our lawyer stopped it & the court forced them to pay back their part of the cost of the trip.
My cousin C & I are what my grandma calls “Hellcats” she is glad we are watching out for her & neither of us have a problem going after anyone who is a threat to our grandma in any way! Thankfully the lawyer my grandma was appointed in court has backed C & I 100% & my cousin C & I ALWAYS have grandma’s back & each other’s!
It has been a long hard struggle but we are not quitters! Our hard work has paid off & our grandma is safe, her finances are safe & most of all she is happy & cared for the way we & she want. With care, love, tolerance, understanding & ways to keep her busy & feeling she is still part of life, without medications to zombify her & make things worse. She may not always be nice, happy, agreeable or even tolerable some days but we all have our moments! Why should she always be perfect when none of us are?
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SUSAN AND JESSICA Susan you know the points I have made privately to you the entire patient syllabus and medication protocol has to be changed, but how. The Doctor has always been the King and the Nightingales are the camp followers. Might have to take a trip to Zurich to meet with the WHO. Just stop and think with so many patients involved withe these “opioids”, the probblem is not the intake but the prescribers who have so many to care for so the easy route is over-medications.
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Good point, Drs aren’t gods despite what they might think, what you have to remember is that you are speaking on behalf of someone else, that might not be able to. No reason for unnecessary medication ever, no argument.
You are a spokesperson. What makes you think that you are speaking/ protecting people on their behalf correctly when you might have got their perspective wrong. Remember this is your opinion maybe and I stress this, it may not be theirs.
Question, does it make you feel better, relieve guilt or improve their quality of life? People with dementia are living in the moment, you aren’t. If I could go back to the point that your experience may be missing the important people and their experience, those we care about. It is so important that you are doing the correct, questioning thing and I applaud you for it, but don’t run away with yourselves.
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What a terrible experience with your grandmother.
However there is a flip side to medication and dementia particularly in early to mid stages.
A minute dose of Zyprexa or Seroquel is often a safer prescription than the benzo class
And the signs of depression can often get lost in the symptoms of dementia.
My father has been under tne care of two neuro psychiatrists and their prescribing has been modest and appropriate. And gave my father a feeling of well being which was lacking for about ten months.
I was the one who suggested some cnemical help.
The aged care facilty have to notify both the specialist and me if a locum is called and a change is suggested for some feason.
The real problem occurs when harried gps are called in by facilities. Most do not have a sound knowledge of psycho pharmacology and thats when these multi cocktails develop.
I micromanage my fathers care and I drive it. I enough clinical knowledge to make appropriate decisions and enough humility to know when we need advice.
So far so good and my father is now 94 with a very slow moving vascular dementia.
He benefitted from a combination of Zoloft and later Zyprexia but in such small doese so as to be almost non therapeutic in people of a younger age
BTW I have swallowed all three drugs at a younger age myself!
So no to chemical restraint
But yes to some properly supervised medication reviewed by specialist visits to my father every 5 or 6 weeks
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Thanks for your comment, which unfortunately is anonymous and without email address which precludes me from following up with you. Here are some questions I have:
What symptoms did your father have that caused you to feel he required medication?
Was he in LTC when the symptoms developed?
How long has he been in LTC?
Was he diagnosed with psychosis?
What interventions were tried before turning to medication?
What doses is he on? What frequency?
How long has he been on the meds?
What is his overall comportment now? How has it changed from pre meds? (e.g. Was he able to walk before? Is he still able to walk now? etc)
Has there been any attempt to take him off the meds? Why or why not?
Re: “The real problem occurs when harried gps are called in by facilities.” This may be one factor. Others are that understaffed facilities don’t have the resources to properly care for residents with dementia; physicians rarely see residents and rely on facility staff for behavioural observations; physicians are unfamiliar with non-pharma approaches; physicians thinking is entrenched in the bio-medical model; etc.
Also, many people with dementia are medicated long before they go into LTCF. As you are probably aware, the rate of psychosis in the general population is less than 5%, and yet the rate at which the elderly and people with dementia are prescribed antipsychotic medications far exceeds that. See for example the dire situation in the province of Quebec where I currently reside.
Thanks again for your comment.
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