Advocacy, Antipsychotic drugs, Toward better care

the truth and lies about antipsychotics and greed: it’s not a pretty picture


risperdal lego
Risperdal lego – curious marketing materials.

Antipsychotic medications such as Risperdal (risperidone) and Seroquel (quetiapine) are prescribed to elderly people with dementia around the world to manage responsive behaviours which could be and should be addressed with non-pharmacological approaches. These antipsychotic medications severely impact the well being of elderly people with dementia; they also have significant health risks.

My mother was first prescribed Risperdal (risperidone) by her family doctor in February 2012 at the lowest possible dose; it was to reduce anxiety associated with dementia. She began also taking Seroquel (quetiapine) after her geriatrician prescribed a low dose of it for her in April 2012; it was to help her (and I) sleep through the night.

The dosages of both drugs were increased shortly after Mom moved into a nursing home in November 2012. I asked that the medications be reduced. They were not. The dosages were again increased on several occasions over a period of months to address responsive behaviours, which I know from personal experience and research shows are largely the result of environmental factors and the approach of caregivers and nursing staff, not of the disease itself.

The high doses of antipsychotics severely impacted my mother. I witnessed the effects, and I continued advocating against them being given to her, but I was unsuccessful in my efforts to stop the prescriptions. I then began further researching their use in elderly populations in the hope that I might be helpful to others if I could not help her. What I have seen and learned enrages me. I am not the only one seeking the truth about these drugs. There is a growing tide of experts pushing for non-pharmacological approaches to caring for people living with dementia.

Pioneers such as Teepa Snow are providing care partners with the skills we need to preserve the dignity of people living with dementia and to help them engage life until the end instead of sedating them into compliance. Now the truth about one of the drugs — Risperdal — has begun to unfold (as I coincidentally intuited on February 2, 2015).

In 2015, healthcare journalist Steven Brill released chapter by chapter (via The Huffington Post), an online “docubook” chronicling Johnson & Johnson’s unrelenting and profit-driven marketing efforts to push Risperdal onto children and the elderly when the drug’s risks for both these populations by far outweighs its unproven benefits.

You can read Brill’s docuseries here. Be prepared to be pissed off.


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14 thoughts on “the truth and lies about antipsychotics and greed: it’s not a pretty picture”

  1. I had heard about Seroquel from my BIL and have resist mom’s Dr. from prescribing them. I didn’t know about Risperdal. This is why I refuse to let my mother go into a home. I am not going to let someone else control how she spends her last days. She takes a Prevacid, a blood pressure pill and one Namenda and that is all that she is going to be taken. There are so many better ways like you said. Great reporting Susan. If it’s okay with you after I’ve read all of this I’d like to write about it but link back to your site since it’s your story. I would like to say I am shocked, but I think I am just sick to my stomach.


    1. Just wait until the full story emerges, then you can really be sick Rena.

      Keep your Mom close as long as you can. Learn the skills and techniques to respond to her behaviours and create better responses in her, that way you can avoid the use of meds which actually CAUSE THE SAME THINGS THEY ARE MEANT TO CURE and more.

      Know that all the annoying things like repetition and anxiety will likely pass on their own in a matter of months. You can hang in there. Anyone can hang in there if they know there is light at the end of the tunnel. One day, when the person living with dementia can’t talk anymore, we might wish to hear them repeating the same thing over and over just to hear the sound of their voice. When they are lying in a bed unable to move, we might wish for them to be walking and “wandering” (I hate that term) around…

      All things pass.

      I’m happy for you to share the story and link back. We both grow and our audiences benefit from collaboration. I will post something tomorrow with highlights from the article. You may want to wait to see them. They are shocking. Really shocking.


  2. Always trust your instincts! I’m not surprised you sensed something was wrong with this whole thing. Thanks for bringing it to everyone’s attention. I’ll pass it on. I’ve learned the hard way that every medication has consequences and unexpected side effects and they should always be researched and considered carefully. Too many doctors are heavy handed and are over prescribing. Thank heavens your mom’s got you to advocate for her. Think of the millions out there who suffer alone and must go without any help. Keep up the good work. You’re amazing.


  3. I knew it was going to be bad, but all of the evidence he has uncovered so far is staggering. I can’t wait to hear all of it so I hope you keep covering it. I think it is so much easier for me because mom and I are so isolated. I hate to say that, but I believe it to be true. Here at home there is nobody, but our family. We don’t know anyone here so we really are only around them except maybe the checker at Walmart. Anyway I think because once we are behind these doors my husband and I have just chosen to be in her world instead of the other way around. The real world never factor into our daily lives. So mom is free to be whatever she feels and it’s my job to keep her happy and engaged for as long as I possibly can. She’s my best friend so it really isn’t that hard for me. Maybe the isolation is a little once in a great while, but I see her big smile everyday when she sees that I’m here when she wakes up and it doesn’t really matter. I have years and years to live, but she probably doesn’t. I can wait, I’m in no hurry.


    1. What a great attitude you have Rena, and I believe you will be blessed over and over and you will never have any regrets ❤

      Re the J&J story, yes, it’s shocking. And I suspect it’s going to get worse. I have no idea what’s coming in the next 11 chapters, but I’m willing to guess that the company abandons any focus on childhood market and begins to focus more efforts on elderly because side effects in adults who have taken risperdal as children are too dramatic and obvious. They have been successfully sued.

      But who cares about “demented” old people? They’re probably better dead anyway many might think. And the ones that are dropped off at nursing homes never to be visited again – who the hell is going to speak for them? So I suspect what we’ll see is more focus on the elderly population as the story unfolds. I may be wrong but that’s my guess based on what I’ve read of the story so far… Let’s see what happens…


  4. I’m so glad to have found this blog, Amazing Susan. I am now a fulltime caregiver for my parents, both of whom have been diagnosed with dementia/Alzheimer’s. As a writer whose career intersected regularly with Big Pharma (and other marketing giants with considerably influence), I came to see these corporations as evil experimenters on an unsuspecting public – I was compelled to write a book, even before my parents’ challenges came to light. Now, I do everything in my power to keep their doctors from jumping on the latest trend to “treat” their cognitive decline. Their brains are unravelling, and they need love, compassion and care, not drugs. They need good food and talk therapy, which no physician EVER addresses. It doesn’t have to be a negative thing, or as traumatic as some people think. It’s not hard to see this, it’s just hard for vulnerable and scared people to resist the authority of a physician motivated by his big pharma reps… in most cases, they mean well, but it’s a very damaging scenario. We need to say “no” to heavy-duty drugs for our seniors, who deserve the best possible quality of life on their terms, not ours.


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