Advocacy, Antipsychotic drugs, NHBPS, Toward better care

20 compelling reasons to rethink the way we label and medicalise the behaviour of people who live with dementia #BanBPSD

In June this year, I posted an open letter to the worldwide dementia care community. Since then, advocates and activists such as myself, including Dr. Al PowerDaniela GreenwoodHoward GordonLiz LesterLeah BisianiSonya Barsness, Dr. Chris Alderman, Kate Swaffer, and others, have joined forces to create an awareness and action campaign calling for the ban of the damaging and stigmatizing artificial construct BPSD (the short form of “behavioural and psychological symptoms of dementia).

As part of the campaign, fellow human rights and dementia care advocate Kate Swaffer penned “Rethinking Dementia: Normal Human Responses,” an excellent post wherein she lists fourteen simple examples of why we should #BanBPSD. Here are five from Kate’s list of 14 [I’ve added bits here and there, which I have enclosed in square brackets]:

I would add these six to Kate’s list of 14:

15 ) Labeling, medicalising and punishing normal human responses to being told to sit or stay still for long periods of time is abuse. Most people (75 per cent) say they would start to feel restless if made to sit longer than half an hour.

16 ) Labeling, medicalising and punishing normal human human bodily functions is cruel and abusive.

17 ) Labeling, medicalising and punishing an individual’s lifelong normal behaviour is cruel and abusive.

18 ) Labeling, medicalising and punishing an individual’s normal human responses to inadequate care, harmful environmental conditions and being restrained is cruel, abusive and wrong.

19 ) Labeling, medicalising and punishing an individual’s normal human responses to cruel, abusive, harmful and wrongful treatment by physically restraining them is abuse.

20 ) Labeling, medicalising and punishing an invidivual’s normal human responses to cruel, abusive, harmful and wrongful treatment by chemically restraining them is abuse and should be made criminal.

I highly recommend reading the full text of Kate’s excellent piece here, and I invite to also read my article “the broken lens of BPSD: why we need to rethink the way we label the behaviour of people who live with alzheimer’s disease,” which was published in the Journal of the American Medical Directors Association.

#IAmChallengingBehaviour #BanBPSD #WeCanCareBetter

take off the blindfolds and #BanBPSD: an open letter to the worldwide dementia community

7 problems with BPSD

the broken lens of BPSD: why we need to rethink the way we label the behaviour of people who live with alzheimer’s disease

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Advocacy, Antipsychotic drugs, Toward better care

7 problems with BPSD

The term “behavioural and psychological symptoms of dementia” (BPSD) is a harmful artificial construct used to inappropriately describe reasonable responses to adverse conditions and circumstances (RRACC) when such responses are expressed by people living with dementia (PLWD).

Some of the damaging and stigmatizing labels and descriptors associated with BPSD are “wandering,” “exit-seeking behaviour,” “challenging behaviours,” “combative,” “aggressive,” etc.

The term BPSD was coined in the late 1990s by the International Psychogeriatric Association (IPA). Twenty years on, a growing number of dementia care advocates worldwide are calling for the BPSD construct to be rejected by the geriatric healthcare professionals and researcher and to be banned from dementia care language (#BanBPSD). Prominent among those calling for the paradigm shift are dementia care pioneers Kate Swaffer, former nurse and care partner, speaker, blogger, activist, and author of What the Hell Happened to My Brain?, and Dr. Allen Power, geriatrician, speaker, author, trainer, consultant.

Dr. Power, whose books Dementia Beyond Drugs and Dementia Beyond Disease, are essential reading for geriatric health professionals, care workers and care partners, summarizes the problems with BPSD like this:

1 ) Relegates people’s expressions to brain disease

2 ) Ignores relational, environmental, historical factors and causes

3 ) Pathologizes normal expressions

4 ) Uses flawed systems of categorization

5 ) Creates a slippery slope to drug use

6 ) Fails to explain how drug use has been successfully eliminated in many nursing homes

7 ) Misapplies psychiatric labels, such as psychosis, delusions and hallucinations

Essentially, the broken lens of BPSD stops us from seeing the real causes of the reasonable reactions to adverse conditions and circumstances (RRACC) when expressed by PLWD, and thus impedes dementia care practitioners and researchers from finding and employing effective, enabling and engaging solutions to the distress experienced by many PLWD.

#IAmChallengingBehaviour #BanBPSD #WeCanCareBetter


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Advocacy, Antipsychotic drugs, Humour

7 snippets from a story about unborn baby bunnies that is scarily similar to the myth of bpsd

For about 80 years, it was accepted as scientific fact that rabbits were first domesticated in 600 A.D. as a result of a decree issued by Pope Gregory the Great declaring that fetal rabbits could be eaten during Lent.

Similarly, for about 30 years, after the International Psychogeriatric Association “invented” the artificial construct of BPSD in the late 1990s, it has been accepted scientific fact that when people who live with dementia respond normally to particular sets of circumstances, and that those reasonable reactions upset or challenge those around them, that those reasonable reactions are caused by dementia. Like the myth of the unborn baby bunnies, the myth of BPSD is being debunked.

But I’m getting ahead of myself.

Quite by accident, in 2016/17, the rabbit domestication story that had been accepted by scientists around the world for almost a century was discovered to be a complete fabrication.

“The whole thing is a house of cards,” Dr. Greger Larson said [as reported by the New York Times], acknowledging that he too has cited the story just like many other researchers. The remaining question, he said, is: “Why did we never question this? Why were we so willing to believe in this origin myth?”

Dr. Larson, who is the director of the paleo-genomics and bio-archaeology research network at the University of Oxford, made the finding (actually, more accurately, it was discovered by one of Larson’s graduate students whom Larson had asked to do some historical fact checking), which was subsequently published by Trends in Ecology and Evolution in December 2017, and which you won’t be able to read unless you live in an ivory tower (one of my pet peeves).

What astonished me as I listened to the story (hear it for yourself below), were the similarities between it and the ongoing acceptance as truth by much of the research, medical and gerontology community worldwide of the artificial construct of so-called “behavioural and psychological symptoms of dementia,“ more commonly known as “BPSD.”

In particular, the uncanny applicability of these snippets of conversation between CBC host Carol Off (CO) and guest Greger Larsen (GL) struck me:

  1. GL: “The story…has been banging around for years but nobody ever bothered questioning [it]. And it’s in both the lay and academic literature…”
  2. CO: “How much of that actually turns out to be true?” GL:“None of it actually.”
  3. GL: “…and so the whole thing is just a house of cards of kind of accidentally mistaking people and translations and older references that all then got pieced together slowly. A bit like a Chinese Whispers or a game of telephone when you were a kid, and so the end result ends up being this kind of bizarre story…”
  4. GL: “And everybody just cites this story very easily over and over again, until it becomes recognized as a kind of fact.”
  5. GL: “So all of these little bits of it were just being kind of shelved onto a house that was being badly constructed with a lot of different materials, until you ended up with something that just made no sense whatsoever.”
  6. GL: “…what the rabbit story really revealed to me was the degree to which we don’t question the things that fit into our worldview. So if I tell you something that you believe without me having to prove it, then you don’t require a whole lot of evidence.”
  7. GL: “…actually there is not a single case where we have any decent evidence…”

The interview closes with this summary into which I’ve inserted in italics what I see as additional parallels to the myth of BPSD:

“These things are agglomerated onto an evolving tradition (the biomedical model). And now when we get to it, we just think ‘oh, well rabbits have always been associated with Easter (“challenging behaviours” are caused by ADRD). And actually they are a very, very recent addition (human behaviour has always been human behaviour until we had a reason to label it as aberrant). And somehow the hare (reasonable reactions to adverse circumstances) got replaced (with BPSD), even though the hare was part of it all along. So when and where that took place and what the motivations were (Ignorance, misunderstanding, good intentions and Big Pharma profit marketing?) and how it all happened (Ignorance, misunderstanding, good intentions and Big Pharma marketing?) we’ve got no idea, but that’s a project we’ve got going on (indeed we do). And what we’re going to get to the bottom of that one (damn right!).”

Here is the CBC As It Happens interview with Dr. Larson (fascinating AND funny):

Listen to the complete As It Happens show in which the segment was aired here

In the event that you don’t see the sanity in what I say and/or you don’t share my view, I offer this:

Thanks to CBC and As It Happens for great stories and public broadcasting worth listening to.

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Advocacy, Antipsychotic drugs, NHBPS

the broken lens of BPSD: why we need to rethink the way we label the behaviour of people who live with alzheimer’s disease

In December 2016, my first-ever journal article (Efforts to Reduce Antipsychotic Use in Dementia Care are Starting to Bear Fruit, but a Lot of Work Remains to be Done) was published in the Journal of the American Medical Directors Association (JAMDA). A second article, the preprint of which appears below in its entirety, was accepted for publication by JAMDA on November 13, ©2017, under the CC-BY-NC-ND 4.0 license for the section “Controversy in Long-Term Care.” Papers by non-academic, non-credentialed professionals or non-researchers are rarely accepted by such publications, and I’m proud of these accomplishments. I dedicate this work to my mom and the countless others like her who were or are inappropriately medicated with antipsychotic drugs.


The Broken Lens of BPSD: Why We Need to Rethink the Way We Label the Behaviour of People Who Live with Alzheimer’s Disease 

Problem: Assessing and reporting the behavior of people living with dementia (PLWD) through the lens of the currently relied-on Behavioral and Psychological Symptoms of Dementia (BPSD) is problematic. Using the BPSD as an assessment tool can rob PLWD in long-term care facilities (LTCFs) and LTCF staff of their collective human rights and their quality of life, as well as their emotional well-being and dignity.

Significance of the problem: The problem of judging the behavior of PLWD through the artificial construct of BPSD is pervasive, persistent and systemic.[1] Hundreds of thousands of PLWD and their care partners are currently negatively impacted by the inaccurate perceptions that result from seeing behavior through the BPSD lens. Without a massive paradigm shift, this problem will only worsen, as the number of PLWD is projected to rapidly increase in the coming years.

Discussion: I will illustrate the gravity of this problem with one qualitative case study (my mother) and the results of quantitative research conducted by myself for this purpose, which together tell a compelling story that demands immediate remedial action.

In the summer of 2013, I initiated legal proceedings to gain control of my mother’s care from another family member. In the lead-up to the court hearing, the LTCF in which my mother resided produced nine months worth of nurses’ notes as proof that my mother needed antipsychotic drugs to control her behaviors, which, they said, were BPSD resulting from the progression of her Alzheimer’s disease.

I reviewed the notes, identified five categories of “events,” coded the notes and tabulated the results. Three of the five categories are relevant here:

Table 1: Nurses’ Notes Coded Events

There were 83 “red circle” events in total (69 marked with an “X”, 14 without). About half (42) were associated with my mother being uncooperative in some way, either by resisting care (21) or not doing as she was told (21). Slightly less than 25% involved conflict with another resident (17), and no additional explanation was given for close to one-third (24) of the events.

It is important to note that, at no time during the nine-month period covered by the notes had my mother been aggressive with me. Likewise, whenever she was with a paid one-on-one “sitter,” constituting 83 reported visits, each of about four to five hours duration, there was not a single reference to her having been verbally or physically aggressive. In fact, 94% of the sitter notes are positive (i.e., my mother was described as good, calm, and/or enjoyable). However, only one of the sitters kept independent logs. The obvious solution of providing more one-on-one care was accessible and affordable; unfortunately both the LTCF and the person in legal control of her affairs opposed it.

In the mid-1980s, researcher Dr. Jiska Cohen-Mansfield developed a tool to measure agitation in PLWD in LTCFs. Called the Cohen-Mansfield Agitation Inventory (CMAI),[2] the tool comprises 29 behaviors such as:

CMAI #1: Pacing and aimless wandering – constantly walking back and forth, including wandering when done in a wheelchair. Does not include normal purposeful walking.

CMAI #7; #8: Hitting (including self) – physical abuse, striking others, pinching others, banging self/furniture; Kicking – strike forcefully with feet at people or objects;

CMAI #29: General Restlessness – fidgeting, always moving around in seat, getting up and sitting down, inability to sit still

The CMAI was designed to take “snapshots in time” that would allow researchers to measure change after specific interventions. It is widely used; however, I believe the tool is inherently flawed because of the way it defines agitation as: “inappropriate verbal, vocal, or motor activity that is not judged by an outside observer to result directly from the needs or confusion of the agitated person.”

This definition falls short in that it:

  • fails to further define “inappropriate”
  • relies on unreliable observers

If I am a PLWD locked in a “memory care unit,” is it “inappropriate” for me to get up and walk down the hall? And how can I possibly engage in “normal purposeful walking” when there is nowhere to go and nothing personally meaningful to do?[3] As Naomi Feil, founder of the Validation Method, avers: “To understand a person’s behavior, his or her physical strengths, social needs, and psychological needs must be known. Behavior cannot be judged appropriate or inappropriate unless it is viewed within the context of these needs.” [4] Moreover, studies show the positive effects of engagement in meaningful activities of LTC residents with dementia on emotional states and behavioral expressions. [5][6] 

Furthermore, Cohen-Mansfield’s outside observers were LTCF nurses who were, I would argue, ill-equipped to judge whether the activities “resulted from the needs or confusion of the agitated person.” Had the needs or confusion of the residents been understood, presumably the staff would have taken actions to address them, and the residents would not then have been agitated in the first place. Since the residents were already agitated, the nurses cannot be deemed reliable observers.[7]

The International Psychogeriatric Association (IPA) launched its educational pack on the Behavioral and Psychological Symptoms of Dementia (BPSD) in 1998. Henceforth, the IPA proclaimed that “agitation in PLWD” would be known as BPSD; thus:

“The term behavioral disturbances should be replaced by the term behavioral and psychological symptoms of dementia (BPSD), defined as: Symptoms of disturbed perception, thought content, mood or behavior that frequently occur in patients with dementia. (Finkel & Burns, 1999) [8]

Essentially, research tools such as the CMAI were morphed into a clinical tool – BPSD. It’s also noteworthy that the IPA’s BPSD Educational Pack was produced under a grant provided by Janssen-Cilag,[9] a subsidiary of Johnson & Johnson pharmaceuticals, the manufacturer and distributor of risperidone (marketed under the brand name Risperdal™), subsequently sold as a treatment for BPSD.

In fact, Johnson & Johnson was ramping up risperidone sales and marketing efforts at the time: [10]

“An 83-person Risperdal ElderCare sales team was formed—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.”

Most important, in reclassifying the behaviors on the CMAI and other scales as “symptoms of dementia,” the IPA overlooked the fact that these behaviors are not by any means exclusive to PLWD. I am not the first or only person to make this argument.[11]

The 29-item Nursing Home Behavior Problem Scale (NHBPS)[12][13] is virtually identical to the CMAI. To help reframe the artificial construct of BPSD, I created a short survey on behavior (SSB)[14] that mirrors the NHBPS, and I invited the general public to complete it online. As of October 15, 2017, more than 1,300 people had registered responses; the SSB is still live and the results[15] are trending similarly over time. Here are the percentages of respondents who answered “yes” to five of the most telling questions:

Table 2: Short Survey on Behavior Select Questions Results

Predictably, 95% of SSB respondents answered “yes” to SSB Q9. But how long is “long?” SSB Q 30 clarifies by asking: “How long could you sit in a chair with nothing to do before you would become restless, want to get up, or start to fidget?” A little over 75% of respondents answered “less than 30 minutes.”

Length of time people say they can sit with nothing to do

As only 2% of respondents say they live with dementia, the only possible conclusion is the behaviors on the NHBPS are not symptoms of dementia. Neither are the behaviors on the CMAI, and neither are the erroneously labeled BPSD.

Twenty-eight of the “red circle” events in the nurses’ notes about my mother were associated with her being “restless,” “wandering,” or “circulating.” For example:

14/07/13 /1600: Clt wandering, restless. Went into another clt’s room. Escorted out,                    clt not happy w this, trying to slap @this LPN.

14/0713 1630: Clt sitting by elevator w (legs) feet stretched out. When asked to move feet from walking path to elevator, started to kick and push w feet. Another clt tried to pass on to elevator would not move feet, both clts kicked @each other. This LPN stood in between, clt slapping + kicking @ this LPN to move.

In other words, Mom “wandered” into someone’s room, and then reacted “badly” when she was forcibly removed. She was told to sit in the corner in a chair adjacent to the elevator, where it was impossible for one’s legs not to block the way unless they were tucked tightly under the chair. When she was asked to move, she protested with negative behavioral expressions. What lay behind this and other similar incidents?

My mother’s bedroom was on the third floor of the LTCF, which accommodated 37 residents on three levels. However, during her first 18 months there, she spent all day in the “locked down” unit on the second floor, where she had no space of her own. My mother was instructed to sit in a chair by the elevator, less than six feet away from the call bell alarm panel that “rang” constantly with fog-horn-like intensity and volume. Given that people with dementia can be highly reactive to sensory inputs, this one poor design feature alone would have caused a great deal of agitation.

Before going into the LTCF, my mother was in the habit of walking several kilometers outdoors every day. She was expected to adapt to the concept of sitting still, which she never did in the four years she was a resident. Every time she stood up, she faced negative repercussions. Similar to 95% of the respondents in the aforementioned survey, my mother was unable and unwilling to sit still with nothing to do for long periods of time. Compounding the issue was the fact that there were no shared public toilets on this unit, which meant she had to be taken into another resident’s room when the need arose; however, if she “wandered in” on her own, she was pulled out forcefully, resulting in a mixed message and confusion all around. In conclusion, the 28 “restless” red circle events were normal responses to an intolerable situation that no resident should experience, with or without dementia.

Six of the red circle events resulted from my mother wanting to sit with a friend at dinner instead of beside her assigned tablemate, whom she didn’t like. I repeatedly asked for her to be moved to a different table. I was told this was “not possible.” When she was eventually “allowed” to sit with her friend (four months later), the dining room episodes stopped. These red-circle events could have been avoided by accommodating her with a simple seat change.

Six more of the “resists care” events had to do with bath time:

19/4/13 10:30: Became agitated once in whirlpool room. Started to hit, kick, pinch, and call for help. Also called this LPN stupid. Tried to jump out of whirlpool chair. Had to ring for help. Remained agitated the whole bath.

The year I cared for my mother in her own home, either I or a paid caregiver helped her shower every morning.[16] Occasionally, she resisted by saying “I don’t need a shower today,” but objections were easily overcome with patience and understanding. She loved being clean, and she was happy after her shower. So what might cause her behavior to change so drastically that she would “hit, kick, pinch, and call for help?” The logical response would be the approach of the nurse giving the baths.[17] The bathing issues could, no doubt, have been averted with a more compassionate and patient approach.[18] Instead, my mother was given extra medications to sedate her on bath days.

These are just a few examples of how the artificial labeling construct of BPSD negatively impacted my mother. A full decade ago, Dr. Cohen-Mansfield and her colleagues reported that “A substantial proportion of behavior problems in dementia arise when care does not appropriately address the underlying causes.”[19] Yet the reasons behind my mother’s behavioral expressions were never examined or addressed. Instead, she was given antipsychotics, which rendered her catatonic for four to five hours each day, and did nothing to reduce the reported behavior (other than when she was asleep) because the underlying causes remained unchanged.

Recent research[20][21][22] on unmet needs in nursing home residents further supports the idea that the BPSD label is misguided and misleading. In a 2013 study of 179 agitated nursing home residents living with dementia, researchers listed 20 sources or indicators of discomfort.[23] The top three were being sleepy or tired (61.5%), sitting in the same place for two hours or more (49.7%), and being physically restrained (28.5%).

It’s important to acknowledge that “unmet human needs and situational frustrations intersect with the person’s cognitive disabilities to generate behavioral expressions/responsive behaviors.” (E. Caspi, personal communication, October 31, 2017.) However, it’s equally important to emphasize that while dementia may enable, amplify or increase the frequency of such behavior, it is not in most cases the root cause, a fact shown by the SSB results, and the insights gleaned from the analysis of the nurses’ notes on my mother’s behavior.

Conclusion: Mistakenly labeling the individual expressions of people living with dementia as BPSD can have serious and adverse consequences; it:

  • feeds into the overall stigma associated with Alzheimer’s Disease and other dementias;
  • reduces the likelihood of identifying and addressing the root causes of challenging behavior;
  • causes unnecessary distress among PLWD and LTCF workers;
  • results in PLWD being inappropriately sedated and chemically restrained with toxic medications that are largely ineffective in treating the “symptoms” for which they are prescribed (off-label).

What we name behaviors greatly impacts how we see and interpret them. It’s time to examine the wording of BPSD as it stands. Many of these behaviors are human responses to unmet physical, emotional and/or psychosocial needs; responses that can easily be seen as normal in the light of feeling threatened or fearful. These responses may well be exacerbated by the medications being inappropriately used to treat them, as well. As dementia care pioneer and author Dr. Allen Power suggests, let’s call them “BPSOD:” Behavioral and Psychological Symptoms of the Over-medicalization of Dementia.[24]

It’s time to reframe behavioral expressions in ways that enable us to identify their root causes and, in turn, inform improved efforts to implement humane, personalized, and effective approaches for the care of PLWD. Seniors with dementia need to be better understood and compassionately cared for, not drugged and managed to fit the constraints of a broken system.


*No conflicts of interest

[1] Macaulay, Susan; Efforts to Reduce Antipsychotic Use in Dementia Care Are Starting to Bear Fruit, but a Lot of Work Remains to be Done; JAMDA 18 (2017). Accessed November 3, 2017

[2] Cohen-Mansfield, J. and Billig, N. (1986), Agitated Behaviors in the Elderly: I. A Conceptual Review. Journal of the American Geriatrics Society, 34: 711–721. doi:10.1111/j.1532-5415.1986.tb04302.x

[3] Caspi, E. (2014). Does self-neglect occur among older adults with dementia when unsupervised in Assisted Living? An exploratory, observational study. Journal of Elder Abuse and Neglect, 26(2), 123-149.

[4] Feil, Naomi, founder, Validation MethodSource: page 29 in Validation Breakthrough book (2002; 2nd edition)]

[5] Casey et al. (2014). Computer-assisted direct observation of behavioral agitation, engagement, and affect in long-term care residents. JAMDA, 15(7), 514-520. Accessed November 3, 2017.

[6] Schreiner et al. (2005). Positive effects among nursing home residents with Alzheimer’s disease: The effect of recreation activity. Aging & Mental Health, 9(2), 129-134. Accessed November 3, 2017.

[7] Macaulay, Susan; 6 reasons why staff in long-term care facilities don’t report incidents of elder abuse and neglect. Accessed November 3, 2017.

[8] International Psychogeriatric Association (IPA); Behavioral and Psychological Symptoms of Dementia Education Pack; 1998. Accessed on November 3, 2017.

[9] International Psychogeriatric Association (IPA); Behavioral and Psychological Symptoms of Dementia Education Pack; 1998. Accessed on November 3, 2017.

[10] Brill, Stephen; America’s Most Admired Lawbreaker; Chapter 2; in the HuffingtonPost Highline, 2015. Accessed on November 3, 2017.

[11] Caspi, E. (2013). Time for change: Persons with dementia and “behavioral expressions,” not “behavior symptoms.” Journal of the American Medical Directors Association, 14(10), 768-769.

[12] Wayne A. Ray Jo A. Taylor Michael J. Liechtenstein Keith G. Meador; Journal of Gerontology, Volume 47, Issue 1, 1 January 1992, Pages M9–M16. Accessed November 3, 2017.

[13] Nursing Home Behavior Problem Scale PDF. Accessed November 3, 2017.

[14] Macaulay, Susan; A Short Survey on Behavior. Accessed November 3, 2017.

[15] Short Survey on Behavior Results. Accessed November 3, 2017.

[16] Macaulay, Susan; 15 tips to make alzheimer dementia shower time successful not stressful. Accessed November 3, 2017.

[17] Macaulay, Susan; waging war at alzheimer bath time. Accessed November 3, 2017.

[18] Somboontanont et al. (2004). Assaultive behavior in Alzheimer’s disease: Identifying immediate antecedents during bathing. Journal of Gerontological Nursing, 30(9), 22-29.

[19] Cohen-Mansfield J, Mintzer JE. Time for change: the role of nonpharmacological interventions in treating behavior problems in nursing home residents with dementia. Alzheimer Disease and Associated Disorders. 2005;19(1):37-40.

[20] Cohen-Mansfield, Jiska et al. Which unmet needs contribute to behavior problems in persons with advanced dementia? Psychiatry Research, Volume 228, Issue 1, 59 – 64.

[21] Cohen-Mansfield J et al. Efficacy of nonpharmacologic interventions for agitation in advanced dementia: a randomized, placebo-controlled trial; Accessed November 3, 2017.

[22] Rethinking Psychosis in Dementia: An Analysis of Antecedents and Explanations; American Journal of Alzheimer’s Disease and Other Dementias, 2017. Accessed November 3, 2017.

[23] Cohen-Mansfield J, Thein K, Marx MS, Dakheel-Ali M, Jensen B. Sources of Discomfort in Persons With Dementia. JAMA Intern Med. 2013;173(14):1378–1379. doi:10.1001/jamainternmed.2013.6483. Accessed November 3, 2017.

[24] Power, Allen; Medicalization of Feelings: BPSD or BPSOD? Accessed November 3, 2017.

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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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