Advocacy, Antipsychotic drugs, Toward better care

10 barriers to reducing antipsychotics for dementia

pills on a spoon
As a result of my experiences as a care partner to someone living with dementia, I have become a vocal advocate for a behavioural/experiential approach to dementia care, which is embraced by a growing number of dementia care pioneers worldwide.

Like these pioneers, some of whom I’ve listed with links at the end of this post, I also advocate against the inappropriate use of antipsychotic medications to “treat” behaviours that are for the most part NOT caused by dementia, but instead by the environments and situations in which we place people who live with dementia as well as the ways in which we interact with them.

The behaviours that are often labeled “difficult” or “problematic” in people who live with dementia would be considered normal responses in anyone else. Geriatricians, ethical medical professionals and health organizations worldwide are calling for drastic reductions in the use of antipsychotic medications that sedate elderly people with dementia into compliance for the sake of convenience and cost reduction.

These drugs are dangerous. They are largely ineffective in treating dementia-related responsive behaviour. Their use is not recommended in elderly people with dementia. They produce debilitating side effects, and in some cases premature death. There are better, more effective, less risky, proven ways to achieve the desired results.

The inappropriate use of these drugs can be reduced; it’s been proven over and over. When care staff are trained in best practices, usage rates fall and everyone is better off, So why are these medications still so widely used? There is no simple answer.

Rather, there is a cluster of interrelated factors, which create barriers and negatively impact efforts to move away from a biomedical model of care toward one that is person-centered and humane. Big pharma is a major one, our drug culture, particularly in certain jurisdictions such as my home province Quebec, Canada, is another.  But there are more.

We need to address all of these factors to effect change. With that in mind, I’ve created a visual framework for thinking about, and taking action on the issue. I intend to use this framework to organize my thoughts, research, writing and activism moving forward, and I hope it might also be useful to other thinkers, researchers, dementia care advocates and care partners as together we work toward better care for people who live with dementia.


10 Antipsychotic factors


A short list of amazing dementia care pioneers:

See also: 3 books and 1 loving video that will change the way you see Alzheimer’s / dementia

Photo credit: Copyright: ginasanders / 123RF Stock Photo

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Humour, Life & Living, Tips, tools & skills

laughing babies better than any pill ever invented, cure for virtually everything

laughing baby 8

“That’s the best idea yet!” I congratulated my cousin Liane.

“I KNOW!” She answered with a smile I could hear. “Who can resist laughing babies?”

“Not even me,” I LOL-ed.

Fifty-year-old Liane, a former nurse, care partners with her 80-year-old friend Florence who was recently diagnosed with dementia. Liane helped Florence move into an assisted living facility across from a long-term care home where the pair now volunteer for an hour or two each afternoon.

“Florence loves to be active. And she’s very social. So she and I were serving tea – having tea is one of the highlights of the day, you know.”

“I know,” I said. “There’s not much to do in those places. Everyone’s bored to tears.”

“Yeah,” she agreed. “Anyway, I had just given a cup of tea to one particular lady who always seems to be unhappy. She’s kind of grouchy and mean. Never smiles. Always complains.”

I’d probably be unhappy too, I reflected to myself. We need to do a better job of caring for the elderly, especially those with dementia. They deserve better than what they’re getting.

“All of all of a sudden I got this brain wave,” Liane continued. “I fished my iPad out of my bag, got on to YouTube, and found a video of laughing babies. Well. You can’t imagine the reaction of that cranky old lady. Within seconds she was smiling and laughing and pointing at the babies. It was great.”

“That’s BRILLIANT Liane. I wish I’d thought of it.”

“The next day, I put laughing babies on the big screen they have in the common room. All the ladies and even the few men that were there were over the moon. ‘Isn’t she cute?’ One said. ‘Look at that one,’ another said. They were smiling and cooing and oohing and ahhhing. Laughing babies. Best cure ever. Who knew?”

My Alzheimer’s Story prescribes joyful activities to create happiness in the lives of people with dementia.

Rx Laughing Babies

Better than any pill ever invented for immediate relief of boredom, depression, anger, anxiety, aggression, aches, pains, and overall malaise associated with life, aging, dementia, and most everything that might ail you or your loved ones.


Enjoy five minutes of laughing babies anytime day or night; before, after or with meals.

Proven results:

Mood improvement, better attitude, smiles, laughter, joy, happiness, connection, engagement, love.


Impossible to overdose. No known negative side effects. No contraindications. Efficient; effective; costs virtually nothing.

Complementary therapies include:

Playful puppies, cats and kittens, jumping kids (too cute for words), and ballet dancing children.

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Advocacy, Antipsychotic drugs, Care Partnering, Challenges & Solutions

Quebec’s eldercare drug culture: a provincial picture paints 1,314 shocking prescriptions

Old people asleep nursing home


The huge variance in the rates and ways antipsychotic are prescribed to elderly people with dementia around the world and the strong push to discourage and decrease their use are proof there are better ways to help people with dementia live well until they die.

I’ve blogged about the United Kingdom’s success in quickly reducing the use of antipsychotics; here’s an excerpt:

In June 2012 the UK’s National Dementia and Antipyschotic Prescribing Audit Summary Report showed that while the number of newly diagnosed people with dementia increased by almost 68 per cent between 2006 and 2011, there was a 60 per cent decrease in the number of people with dementia receiving prescriptions of antipsychotic medication (i.e. to 7 per cent in 2011 from about 17 per cent in 2006) .

In contrast, the rate of prescription of antipsychotics to the elderly has remained virtually the same (i.e. between 300 and 600 prescriptions per 1,000 elderly people) in nine of Canada’s 10 provinces over a similar period (2009 – 2014) .

Nine Canadia provinces


Shockingly, in Quebec, the province in which I live, the rate of prescribing antipsychotics to the elderly was 1,314 prescriptions per 1,000 in 2014. That’s 1.3 prescriptions per elder — four times the prescribing rate in Alberta and Newfoundland, double the rate in Ontario and New Brunswick. Antipsychotics are designed to help people with schizophrenia, which occurs at a rate of about one to two per cent in populations overall. What’s wrong with this picture?

Quebec rate antipsychotics


AND, while the UK reduced the number of antipsychotic prescriptions to the elderly by 52 per cent from 2008 to 2011, the rate of prescribing antipsychotics to the elderly INCREASED by 20 per cent in Quebec from 2009 to 2011. Overall, it rose by 31 per cent between 2009 and 2014. Hmmmmm.

Furthermore according to the 2015 Ontario Drug Policy Network report:

  • Prescriptions for antipsychotics to elderly patients in Canada increased nearly 32 per cent between 2009 and 2014, to about 4 million prescription from about 3 million . (Download the 2015 Ontario Drug Policy Network report here.)
  • The total amount spent on antipsychotic prescriptions dispensed to elderly patients in Canada increased by 21 per cent to $75 million between 2009 and 2014. As the rates in the other nine provinces remained relatively flat, Quebec is likely responsible for the lion’s share of the cost increase.
  • The bulk (97 per cent) of antipsychotics prescribed in Canada are atypical antipsychotics such as quetiapine and risperdone.

Are there twice as many crazy old people per thousand in Quebec than there are in Ontario? Are Quebec seniors with dementia four times more likely to require medication than those in Alberta? And if so why? Why do rates of prescription vary so dramatically between provinces, regions and countries? Why do some places resist change and continue to prescribe drugs “off label” to old people with dementia knowing full well the risks include an earlier death? Why are some places, provinces, regions and countries committed to change and others seem to be in denial about moving forward?

Lots of questions. I continue to explore answers.

Stay tuned.

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Advocacy, Antipsychotic drugs

let’s get dead right about dementia and dangerous drugs


Efforts to reduce antipsychotic use in dementia care are starting to bear fruit, but a lot of work remains to be done.

(Accepted for publication by the Journal of the American Medical Association 161201; © 2016 under the CC-BY-NC-ND 4.0 license

Some people say the only way to manage behaviours and symptoms that have become associated with dementia is to medicate people with dementia. Those people are dead wrong. Yes, antipsychotics such as risperdone, quetiapine, and others may be used judiciously to address potentially dangerous situations and/or real psychosis. However, geriatricians and eldercare experts worldwide agree[i] that when antipsychotic medication is given to elderly people with dementia it should beat the lowest possible dose for the shortest possible time and always after all other avenues have been tried and have failed. In other words, these medications should only be used as a last resort.[ii]

Emerging facts show the percentage of people with dementia who benefit from antipsychotics is small, the risks may not be worth it, and there are better, more effective, non-pharmacological ways of improving the quality of life of those who live with the disease as well as that of those who are their care partners. AND, ample evidence proves the use of antipsychotics in elders with dementia can be successfully reduced.

Let’s start with the United Kingdom. In 2008, an all-party parliamentary group on dementia in the UK produced a 36-page report: “Always a last resort: inquiry into the prescription of antipsychotic drugs to people with dementia living in care homes.[iii] Essentially, the group found the over prescription of antipsychotics to be a “significant problem in many care homes” due to a:

  • lack of dementia care training
  • lack of leadership in care homes
  • dearth of person-centered care

The report spurred the UK government to create a national dementia strategy[iv] in 2009; it focussed on three key areas:

  1. improved awareness
  2. early diagnosis
  3. higher quality of care

The government also commissioned dementia care expert Dr. Sube Banerjee to produce an independent review on the use of antipsychotics in elderly people with dementia in the UK. The report concluded:

  • antipsychotic use was too high in patients with dementia
  • the associated risks outweighed the benefits in most cases
  • drugs seemed to have only a limited positive effect in managing dementia symptoms
  • antipsychotics seemed to be used too often as a first-line response to difficult behaviour in dementia (most often agitation), rather than as a considered second-line treatment when other non-pharmacological approaches have failed

On the basis of these findings, the UK government pledged to reduce by two-thirds the use of antipsychotics for people with dementia by November 2011. It was an extremely ambitious target. Nevertheless, in June 2012, the UK National Dementia and Antipsychotic Prescribing Audit Summary Report showed that while the number of newly diagnosed people with dementia increased by almost 68 per cent between 2006 and 2011, there was a 60 per cent decrease in the number of people with dementia receiving prescriptions of antipsychotic medication (i.e. down from about 17 per cent in 2006 to about 7 per cent in 2011).  While the UK missed its goal of a 66 per cent reduction, its achievement of a 52 per cent decrease in two years is remarkable.

UK dementia antipsychotic 2012 w arrows

In May 2016, the Canadian Foundation for Healthcare Improvement (CFHI) reported the results of a pan-Canadian initiative to reduce the inappropriate use of antipsychotic medication among seniors in long-term care facilities.[v] The CFI identified five specific problems with antipsychotic drugs:

  • they are not the best strategy for managing dementia
  • they are associated with cognitive decline (i.e. they worsen dementia)
  • they can cause serious harm, including premature death
  • the prescriptions are expensive
  • the associated complications from overuse are even more expensive

The Foundation’s initiative, implemented in 56 long-term care facilities across seven Canadian provinces resulted in reducing or discontinuing antipsychotic use in 54 percent of the 416 residents who participated in the study over the course of a year. Fifteen Foundation-supported teams established “more patient-centred, team-based and data driven approaches to care” in the 56 facilities. By the end of the project antipsychotic use was completely eliminated in 36 percent of the participants (150 people); it was reduced in another 18 percent (75 people). Reducing the use of antipsychotics also resulted in:

  • fewer falls (down 20 per cent)
  • less verbally abusive behaviour (down 33 per cent)
  • less physically abusive behaviour (down 28 per cent)
  • less socially inappropriate behaviour (down 26 per cent)
  • less resistance to care (down 22 per cent)

Most important of all, the residents experienced a better quality of life, and their families “got their loved ones back.”

In the course of the collaborative, the CFHI found “a troubling discrepancy across jurisdictions concerning the use of antipsychotics in long-term care (LTC) without a diagnosis of psychosis.” In other words, people who live with dementia but who have not been diagnosed with psychosis are being given drugs that are designed for people who have been diagnosed with psychosis, and the practice varied widely between regions as well as between individual facilities.

According to the CFHI’s report, only six Canadian provinces and territories publicly report on potentially inappropriate use of antipsychotics in LTC. Usage ranges from a low of 21.1 per cent of people in Alberta LTC homes to nearly double that (38.2 per cent) in Newfoundland. Québec, the province in which I reside, is one of those for which such data is not available. However, given that the rate of prescription of antipsychotic medication to the elderly in Quebec is three times that of Alberta,[vi] one can only imagine the frightening amounts of unnecessary antipsychotics that are currently being given to elderly Quebeckers with dementia in long-term care facilities. Tellingly, and tragically, no Quebec facilities participated in the Canadian Foundation for Healthcare Improvement’s study.

Quebec rate antipsychotics


Meanwhile in the United States, the National Partnership to Improve Dementia Care in Nursing Homes, a collaborative effort between the Centers for Medicare and Medicaid Services (CMS), and “federal and state agencies, nursing homes, other providers, advocacy groups, and caregivers” is working to improve comprehensive dementia care by:

“Finding new ways to implement practices that enhance the quality of life for people with dementia, protect them from substandard care and promote goal-directed, person-centered care for every nursing home resident.”

It intends to do so by reducing the use of antipsychotic medications while enhancing the use of non-pharmacologic approaches and person-centered dementia care practices. Since it’s launch in 2012, the National Partnership has documented significant reductions in the prevalence of antipsychotic use in long-stay nursing home residents across the United States (i.e. from about 24 percent in 2012 to less than 20 percent in the second quarter of 2015.) The CMS aims to reduce the use of antipsychotic medications in long-stay nursing home residents by 30 percent by the end of 2016.


While these initiatives are heartening, they are long overdue. And the reductions that have been realized represent averages; that means some facilities are still over prescribing at prevalence rates as high as 60 percent. I have seen the devastation and suffering caused by the inappropriate use of antipsychotics to “treat” people who live with dementia. My mother suffered from being inappropriately prescribed risperidone and quetiapine in tandem for four years. It was nothing short of abuse. It broke my heart, and transformed me into a fierce advocate for better care. I hope initiatives like those I’ve described in this piece continue and that they will one day spark a tsunami of change in the way we care for people who live with dementia around the world.

Our elders who live with dementia deserve to be treated with dignity and respect, not abused with chemical restraints. Why do physicians continue to prescribe antipsychotics when these drugs have significant risks (death tops the list), and have been proven to be only marginally effective in addressing the behaviours for which they are prescribed? Why do we do things that have been proven dead wrong when they can clearly be righted? How can we stop poor care practices and institute better ones?

The members of AMDA have the answers; it’s long past time to implement them. I call on all LTCF administrators and medical personnel to make it their personal mission to put an end to the inappropriate use of these medications in people who should not be taking them.








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Advocacy, Antipsychotic drugs

the worldwide case against giving antipsychotics to elderly people living with dementia

old person with drugs

Members of the worldwide Alzheimer’s and dementia care community overwhelmingly recommend against using antipsychotic drugs as the first choice in addressing behavioural and psychological symptoms of dementia (BPSD) and aggression in dementia patients.

In fact, experts everywhere believe antipsychotic medication should only be used as a last resort after every non-pharmacological avenue of treatment has been exhausted.  

The American Geriatrics Society says:

Don’t use antipsychotics as first choice to treat behavioral and psychological symptoms of dementia (BPSDs).

The Society further notes:

“People with dementia often exhibit aggression, resistance to care and other challenging or disruptive behaviors. In such instances, antipsychotic medicines are often prescribed, but they provide limited benefit and can cause serious harm, including stroke and premature death.

Use of these drugs should be limited to cases where non-pharmacologic measures have failed and patients pose an imminent threat to themselves or others. Identifying and addressing causes of behavior change can make drug treatment unnecessary.” (Italics mine.)

The Canadian Geriatrics Society says:

“…antipsychotics usually don’t reduce disruptive behaviour in older dementia patients.” (Italics mine.)

The side effects can be serious; they include drowsiness and confusion—which can reduce social contact and mental skills, and increase falls.

The Alzheimer’s Society of the United Kingdom says:

Instead of prescribing anti-psychotic drugs, health care professionals should begin by “fully assessing the person’s behaviour, health and current treatments, as well as understanding their history, interests, personality and culture to develop an individual care plan. The care plan should be designed to provide access to interventions tailored to the person’s preferences, skills and abilities.”

Finland’s current Care Guidelines say that for the treatment of memory disorders, antipsychotics should only be used as a short-term treatment for severe psychotic symptoms, agitation and aggression. (Italics mine.)

In June 2014, the Canadian Foundation for Healthcare Improvement announced:

“…[we] support healthcare organizations across Canada [in reducing] the inappropriate use of antipsychotic medications among patients with dementia.” (Italics mine.)

In February 2015, Health Canada issued a restriction on the dementia indication for risperidone; it states:

The indication for risperidone in dementia has been restricted to the short-term symptomatic management of aggression or psychotic symptoms in patients with severe dementia of the Alzheimer type unresponsive to non-pharmacological approaches and when there is a risk of harm to self or others. The indication no longer includes the treatment of other types of dementia such as vascular and mixed types of dementia. (Italics mine.)

In June 2015, the Ontario Drug Policy Network issued a report on antipsychotics and the elderly.

The report’s #1 recommendation is:

“…the ” implementation of programs to reduce the inappropriate use of antipsychotic drugs for elderly people with dementia.”

The comprehensive analysis was prepared by a group of experts from a diversity of disciplines. Their recommendations were based in part on this finding:

“…there were no significant differences in the improvement of total [Behavioural and Psychological Symptoms of Dementia] BPSD or be BPSD subscales for psychosis, aggression and agitation across atypical antipsychotic agents (namely: risperidone, quetiapine, olanzapine, aripiprazole) when compared to placebo among patients with dementia and BPSD.”

In other words, antipsychotic drugs (with a relatively small percentage of exceptions), don’t work in reducing responsive behaviours (BPSDs) in people living with dementia. The drugs–quetiapine in particular–are primarily used as sedatives.

Meanwhile, many physicians still prescribe antipsychotic medication for elderly people living with dementia. On average, about one in three residents in long-term care facilities in North America are given antipsychotics.

Why is that?

I’m looking for answers and blogging about this issue because I’ve seen the effects of these drugs first hand on people with dementia and I don’t want to be sedated when I get dementia myself. I want to engage life as fully as possible until the end.

Additional information here:

it’s no joke: seroquel and risperdal illegally marketed to treat elderly people with dementia

7  things you should know about how and why antipsychotics are inappropriately prescribed to people living with dementia in care facilities,

find the lady in the lies: a shell game of side effects and suffering for the sake of antipsychotic sales,

 the truth and lies about Risperdal and greed have begun to unfold and it’s not a pretty picture

John Oliver lampooned BigPharma

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Advocacy, Antipsychotic drugs

it’s no joke: seroquel and risperdal illegally marketed to treat elderly people with dementia


John Oliver’s tragically funny Big Pharma lampoon went viral. Maybe because, like most incisive satire, his piece is rooted in truth. Here’s some of the shocking evidence with respect to the marketing of antipsychotic drugs such as quetiapine (Seroquel) and risperdone (Risperdal) to elderly people with dementia such as Alzheimer’s disease:

On April 27, 2010, as mentioned in Oliver’s piece, AstraZeneca LP and AstraZeneca Pharmaceuticals LP was ordered to pay $520 million to resolve allegations that it illegally marketed the anti-psychotic drug Seroquel (quetiapine) for uses not approved as safe and effective by the United States Food and Drug Administration.

Specifically, it marketed the drug for uses that were not FDA improved including aggression, Alzheimer’s disease, anger management, anxiety, attention deficit hyperactivity disorder, bipolar maintenance, dementia, depression, mood disorder, post-traumatic stress disorder, and sleeplessness.

According to the settlement agreement:

“AstraZeneca targeted its illegal marketing of the anti-psychotic Seroquel towards doctors who do not typically treat schizophrenia or bipolar disorder [for which the drug had FDA approval], such as physicians who treat the elderly, primary care physicians, pediatric and adolescent physicians, and in long-term care facilities and prisons.” (Italics mine.)

In April 2014, a joint CBC/Canadian Press report revealed the widespread inappropriate use of quetiapine as a “sleeping aid” for female inmates in the Canadian prison system. When I read it, I was struck by the parallels between subduing women in prison and sedating vulnerable elderly people with dementia using quetiapine.

In November 2013, Johnson & Johnson agreed to pay more than $2.2 billion in criminal and civil fines to settle accusations that it improperly promoted the antipsychotic drug Risperdal (risperdone). The Wall Street Journal reported:

“The agreement is the third-largest pharmaceutical settlement in United States history and the largest in a string of recent cases involving the marketing of antipsychotic and anti-seizure drugs to older dementia patients. It is part of a decade-long effort by the federal government to hold the health care giant — and other pharmaceutical companies — accountable for illegally marketing the drugs as a way to control patients with dementia in nursing homes and children with certain behavioral disabilities, despite the health risks of the drugs.” (Italics mine)

On February 24, 2015, Johnson & Johnson was ordered to pay $2.5 million in damages to Austin Pledger and his family for failing to warn that its Risperdal antipsychotic could cause gynecomastia, which is abnormal development of breasts in males. Read Steven Brill’s shocking online ‘docubook’ on the case here; in addition to Pledger’s story it documents how J&J marketed Risperdal to eldercare physicians, long-term care facilities and nursing homes in the USA.

In May 2015, Johnson & Johnson was ordered to pay $7.8 million to settle the state of Arkansas’s claims the company illegally marketed Risperdal. According to BloombergBusiness, as part of that case:

“Janssen (a J&J subsidiary) pleaded guilty to a criminal charge tied to claims it marketed the drug for uses not approved by the U.S. Food and Drug Administration, including treating elderly dementia patients.” (Italics mine.)

These fines and settlements are mere drops in the BigPharma profit bucket.

Meanwhile, many physicians still prescribe antipsychotic medications for elderly people living with dementia. On average, about one in three residents in long-term care facilities in North America are given antipsychotics. Why is that? Is it because antipsychotics actually work in reducing responsive behaviours in people with dementia despite the fact that’s not what they’re intended for? The answer to that question is no–evidence shows people in LTCFs are for the most part better off WITHOUT antipsychotics.

I continue to blog about this issue. Read more shocking facts at the links here.

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Image copyright: amenic181 / 123RF Stock Photo

Advocacy, Antipsychotic drugs, Challenges & Solutions, Toward better care

7 things you should know about how and why antipsychotics are inappropriately prescribed to people living with dementia in care facilities

elderly man being given drugs

The more research I do into the inappropriate use of antipsychotics to address responsive behaviours in people living with dementia, the angrier I get.

I was deeply disturbed when I read this 2008 report produced by an all-party parliamentary group on dementia in the UK: “Always a last resort: inquiry into the prescription of antipsychotic drugs to people with dementia living in care homes.”

Here is an excerpt from the foreword by group chairperson Jeremy Wright MP: Continue reading “7 things you should know about how and why antipsychotics are inappropriately prescribed to people living with dementia in care facilities”

Advocacy, Antipsychotic drugs

find the lady in the lies: a shell game of side effects and suffering for the sake of antipsychotic sales


three car monte


“Three-card Monte” — also known as “Find the Lady” or the “Three-card Trick” — is the title of the fifth chapter of  healthcare activist and journalist Steven Brill’s unfolding “docubook”  on corporate behemoth Johnson & Johnson’s shell game of greed and justification with respect to the marketing of its antipsychotic medication Risperdal (risperidone).

Continue reading “find the lady in the lies: a shell game of side effects and suffering for the sake of antipsychotic sales”

Advocacy, Antipsychotic drugs

10 things Johnson & Johnson probably wishes the world didn’t now know about the way it marketed risperdal

Johnson & Johnson's schizophrenia drug Risperdal is arranged


Healthcare activist and journalist Steven Brill took on one of BigPharma’s biggest guns — Johnson & Johnson — with an online “docubook” chronicling the behemoth’s unrelenting and profit-driven marketing efforts to push Risperdal onto children and elderly people with dementia when the drug’s risks and unwanted side effects for both these populations seem to far outweigh its disputed benefits.

The story, which goes back to the company’s founding in 1886, is meticulously documented, and it’s a riveting read. I am personally interested because my care partner, who lives with dementia, has been administered Risperdal for close to four years against my wishes.

J&J’s strategies and tactics to market the drug as a way to reduce responsive behaviours in elderly people with dementia are, well, you be the judge…here are some highlights from Brill’s piece:

  • Johnson & Johnson has settled thousands of cases involving illicit promotion of Risperdal, including Department of Justice civil and criminal complaints, for a total fast approaching $3 billion.
  • “It would be misleading to suggest that the safety and efficacy of Risperdal has been established in the elderly,” regulators wrote (in the 1990s).
  • In the 1990s, Dr. Paul Leber of the FDA wrote to Johnson & Johnson: “You appear to be exploring Risperdal’s potential value for a much broader and more diffuse clinical target, namely ‘behavioral disturbances in demented patients.’” That label, he continued, “would also encompass a range of other clinical findings, e.g., anxiety, depression, agitation, aggressiveness, verbal outbursts, wandering, etc. that would not necessarily be considered psychotic manifestations.”
  • Seeming to anticipate the mental institutions and nursing homes that were a big part of the market targeted in Johnson & Johnson’s business plan, Leber added, “Some [of these symptoms] … might even be construed by some as appropriate responses to the deplorable conditions under which some demented patients are housed, thus raising an ethical question regarding the use of antipsychotic medications for inappropriate behavioral control.”
  • An 83-person Risperdal ElderCare sales team was formed (in 1998)—creating a countrywide unit whose explicit, unabashed mission was to get Risperdal into the mouths of an off-limits population. Its only targets, according to internal budgets and sales plans, were doctors who primarily treated the elderly or who were medical directors at nursing homes.
  • Lisa Stockbridge of the FDA’s Division of Drug Marketing, Advertising and Communications wrote to Janssen (a subsidiary  of Johnson & Johnson), “the warning regarding tardive dyskinesia”—involuntary movements such as facial grimacing—“is minimized,” and “the claim[s] that ‘Risperdal can enhance daily living’ or that [it] offers ‘quality control of symptoms for daily living’ are considered to be false or misleading.”
  • In January 1999 the US FDA refuses Janssen’s request to expand label for elderly, explaining it had failed to “fully evaluate the safety of [Risperdal] for use” by the elderly and had “failed to fully explore and explain what appeared to be an excess number of deaths” among Risperdal users.
  • By the summer of 2000, Johnson & Johnson signed a new, more extensive deal with (Omnicare). One of the J&J executives on the account crowed in a memo about “Omnicare’s ability to persuade physicians to write Risperdal in the areas of Behavioral Disturbances associated with Dementia.”  He continued: “Omnicare, Inc. has demonstrated its ability to partner in a true sense of the word and has generated well over 100 million dollars of Johnson & Johnson pharmaceuticals annually.”
  • Doctors were reminded that medical care is all about treating the symptoms that bothered their patients (or, in the case of nursing homes, the staff members who had to control patients). It didn’t matter whether a nursing home resident was acting out because she had Alzheimer’s or was just plain unhappy, or was acting out because she was among the less than 1 percent of the elderly who were schizophrenic. The pill would calm her down.
  • By 2001, Johnson & Johnson’s off-label marketing had been so successful that, (according to the company’s own records) “over one half of all antipsychotic-treated dementia patients are currently using Risperdal in the U.S.”

You can read Brill’s online docubook here. It’s both fascinating infuriating. I take solace in the fact that when lies are told, the truth eventually unfolds.

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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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