Challenges & Solutions, NHBPS, Toward better care

101 potential causes of behaviour by people living with dementia that institutional care staff may find challenging

While researching my second JAMDA article, I came across a relatively recent paper by Dr. Jiska Cohen-Mansfield on the causes of discomfort in people who live with dementia (PLWD) in long-term care facilities (LTCFs). Cohen-Mansfield and her team developed a Sources of Discomfort Scale (SODS), as part of a larger study for the “Treatment Routes for Exploring Agitation” (TREA). The SODS lists the 20 most common sources of discomfort the researchers discovered, of which the top four are:

  1. feeling tired or sleepy
  2. sitting for too long
  3. being restrained
  4. inadequate lighting

This caused me to revisit my list of 35 things that may cause people with dementia (and you) to become uncooperative, upset, angry, anxious or “aggressive,” which I then found inadequate. Somewhere else (I don’t remember where now), I had come across the concept of separating sources of discomfort and agitation under four broad categories:

  • physical discomfort
  • psychological discomfort
  • social discomfort
  • environmental factors

Like Dr. Cohen-Mansfield, I continue to explore the root causes of the of the reasonable reactions people living with dementia have to the circumstance in which they find themselves. These reasonable reactions are also sometimes called behavioural expressions, responsive behaviours, personal expressions and, unhelpfully, “challenging behaviours.” “The broken lens of BPSD: why we need to rethink the way we label the behaviour of people who live with alzheimer’s disease” gives specific examples drawn from my personal experience of how the biomedical model misses the mark when it comes to identifying the causes of behavioural expressions in PLWD.

Based on my own experience and observations, I developed this list of 101 possible underlying reasons for the responsive behaviours of PLWD in LTCFs, grouped into the four broad categories mentioned above:

Physical discomfort (33)
  1. pain
  2. constipation
  3. incontinence
  4. forced incontinence (needing help with toileting, but no help available)
  5. being wet / soiled
  6. being assaulted
  7. being neglected and/or abused
  8. feeling hot
  9. feeling cold
  10. fatigue
  11. exhaustion
  12. hunger
  13. thirst
  14. breathing difficulties
  15. hearing problems (helpful downloadable PDF by Agnes Houston MBE)
  16. vision problems (helpful downloadable PDF by Agnes Houston MBE)
  17. sensory issues (helpful downloadable PDF by Agnes Houston MBE)
  18. reaction to food (e.g. caffeine)
  19. stomach upset
  20. being restrained
  21. dry skin
  22. itchiness
  23. poor diet
  24. malnutrition
  25. ill-fitting clothes
  26. insufficient bathing
  27. lack of exercise
  28. weakness
  29. illness (e.g. various infections including UTIs)
  30. inability to verbally communicate (e.g. aphasia)
  31. being denied touch
  32. unmet sexual needs
  33. experiencing the side effects of medications (e.g. risperidone, quetiapine,) and/or polypharmacy
Psychological discomfort (36)
  1. fear
  2. confusion
  3. frustration
  4. boredom
  5. loneliness
  6. shame
  7. depression
  8. despair
  9. hopelessness
  10. grief
  11. loss
  12. humiliation
  13. isolation
  14. lack of love
  15. lack of attention
  16. feeling out of control
  17. feeling incompetent
  18. feeling unheard
  19. feeling worried
  20. feeling panicky
  21. feeling powerless
  22. being a “stranger in a strange land”
  23. being restrained/denied one’s freedom of movement or voice
  24. being told what to do
  25. being neglected
  26. being abused
  27. not getting to do what one wants
  28. too much stimulation
  29. too little stimulation
  30. too much routine
  31. too little routine
  32. life changes
  33. being purposeless
  34. being denied pleasure and play
  35. anxiety (as a result of all of the above and below)
  36. feeling angry (as a result of all of the above and below)
Social discomfort (16)
  1. having strange people all around
  2. being in close quarters with others
  3. being isolated
  4. being punished
  5. being ridiculed
  6. being bullied
  7. too much social stimulation
  8. too little social stimulation
  9. forced activity
  10. forced inactivity
  11. being denied access to loved ones
  12. being patronized
  13. being infantilized
  14. being shamed
  15. being embarrassed
  16. being forced to interact with people one doesn’t like
Environmental factors (16)
  1. noise  (also: helpful downloadable PDF by Agnes Houston MBE)
  2. unknown sounds
  3. loud sounds
  4. radio / television
  5. too much light
  6. too little light
  7. heat
  8. cold
  9. clutter
  10. uninteresting surroundings
  11. unfamiliar surroundings
  12. change in surroundings
  13. being confined to a small space
  14. being confined indoors
  15. stale air / lack of ventilation
  16. lack of sun

This list isn’t exhaustive. To add to it, ask yourself what would make you feel uncomfortable, anxious, unwilling to cooperate, angry, “combative,” and/or upset. Correctly identifying the root cause of behavioural expressions that are problematic for care workers and LTCF staff can help us find solutions other than inappropriately medicating people 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

20 questions that help explain why people with dementia get agitated and physically aggressive

See also:

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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, Toward better care

will fear of alzheimer’s drive us to drugs for life?

My friend DT is worried. He’s got me worried too.  DT, recently retired from the pharmaceutical industry, sent me a link to this article “Analysis of failed Alzheimer’s trials gives two antiamyloid antibodies new momentum,” and included an alarming recap:

“Big pharma is going to convince an entire generation to take their toxic drugs (in huge doses) beginning early in life and potentially for life, in the hopes that it will prevent Alzheimer’s disease.

The potential profits for a strategy like this are staggering. And the potential disaster in human lives is also staggering; toxic drugs taken in large doses for decades? Even if it doesn’t kill people, it will leave them damaged somehow. And all of this using relatively the same drugs that have – as yet – failed to make a difference in Alzheimer’s!

If this isn’t the epitome of insanity, I don’t know what is. And it’s happening.”

I get the general gist,” I emailed back. “Researchers are proposing to massively increase the doses of drugs that have been shown not to work in treating Alzheimer disease thus far to see if more might be better. But a lot of the technical language is beyond me.”

“For example?” DT queried by return.

“I don’t even try to understand the various theories on plaques, tangles, taus, blah, blah, blah,” I wrote. “It’s too much for my little brain. And I don’t pay much attention to stuff related to “a cure” either, because I don’t think there’s going to be one anytime soon (i.e. not within the next 20 years). I think we need to spend a lot more time on care and doing it better.”

As an indication of the specific technical stuff that was over my head in the article, I pasted this in before I hit “reply:”

“Drug companies have erred on the side of caution in large part because antiamyloid antibodies can cause a syndrome called ARIA (Amyloid-Related Imaging Abnormalities), an inflammatory response of brain edema or microhemorrhages. Concern over this side effect has moderated as researchers accumulate more adverse event data. Most cases are asymptomatic and resolve spontaneously. New open-label extension data from the Scarlet Road and Marguerite Road trials of gantenerumab, plus a new titration model by Roche, have also increased confidence that patients will tolerate the antibody at subcutaneous doses of up to 1,200 mg.”

DT, who is known for his rather dark and satirical sense of humour, supplied a translation:

“Big pharma gets nervous when their drugs cause people’s brains to swell and bleed. They scramble back to the data to see what they can do to rescue their trillion dollar investment, all the while reassuring the public that these side effects are hard to detect and may not always be fatal. In the meantime, new experiments with people who know what drug they are taking (vs. being kept in the dark) are proving that people can take enormous doses of these drugs by under-the-skin injections without dying…. yet.”

Whoa. That’s pretty scary stuff, even for DT.

He agreed with me on a cure being unlikely, but hopes we may turn away from pharmaceuticals and more toward dietary, lifestyle, and other preventive measures. For those who get Alzheimer or a related dementia despite their best holistic efforts, his fingers are crossed for compassion-centred care.

“But stopping the BigPharma machine is going to be extremely difficult,” he cautioned. “Because now ANYONE who’s afraid of getting dementia will be persuaded to take these drugs, thanks to manufacturers’ capacity to use media and marketing models that prey on our fears.  It’s really sad.”

But not inevitable! This is one more reason to turn around the negative narrative and stigma associated with Alzheimer disease and related dementias, and to find ways to live with them before we die from fear of them.


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Advocacy, Antipsychotic drugs, Toward better care

20 caregivers answer the antipsychotic question

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

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

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

Here’s what caregivers said:

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

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

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

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

3) Legislate against them. ~ T.K.

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

4) Train staff instead. ~ G.O.

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

5) They ended Mom’s life. ~ J.B

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

13 ) Replace with love. ~ C.A.

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

14 ) Hell nooo. ~ P.G.

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

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

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

16 ) Avoid at all costs. ~ D.W

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

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

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

18 ) Of no help. ~ C.B.

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

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

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

20 ) No. They do more harm than good.


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

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

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

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Advocacy, Antipsychotic drugs

misprescribing antipsychotic drugs to elderly dementia patients is an outrage. it’s also elder abuse.


I’m re-blogging this article with the express permission of the author Dr. Michael A. Carome, Director, Health Research Group. It originally appeared in Public Citizen’s online Health Letter in 2015 (see


Dr. Carome wrote:

The warning, written in bolded letters and placed in a black-bordered box at the front of the labeling for all antipsychotic drugs, couldn’t be starker:


Elderly patients with dementia-related psychosis treated with antipsychotic drugs are at an increased risk of death. [DRUG NAME] is not approved for the treatment of patients with dementia-related psychosis.

The Food and Drug Administration initially required the inclusion of this warning on the labels of all newer “atypical” antipsychotic drugs (for example, Abilify [aripiprazole], Risperdal [risperidone], and Zyprexa [olanzapine]) in 2005.* In 2008, the agency expanded this requirement to the labels of all older “conventional” antipsychotics (for example, Haldol [haloperidol] and Thorazine [chlorpromazine]).

Nevertheless, despite these long-standing, glaring warnings, physicians continue to prescribe antipsychotic drugs to too many elderly patients with dementia. A report by the U.S. Government Accountability Office (GAO) released in January [2015] documented the scope of the problem: In 2012, about a third of older adults receiving care in nursing homes for more than 100 days were treated with an antipsychotic medication. In addition, among the 1.2 million older adults enrolled in Medicare Part D who were diagnosed with dementia and living outside of nursing homes (for example, in assisted-living facilities or at home), 170,000 (14 percent) were prescribed one of these drugs.

The GAO report acknowledged that the U.S. Department of Health and Human Services (HHS) has taken several actions to reduce the use of antipsychotic medications in nursing home patients, but it criticized HHS for doing nothing to rein in the misuse of these drugs in elderly dementia patients in other settings.

Elderly dementia patients commonly display agitation, aggression, delusions or other disruptive behaviors (1). For many assisted-living facilities and nursing homes, use of antipsychotic drugs — sometimes called “chemical restraint” — is viewed as an easier, cheaper substitute for having qualified staff with the training and expertise needed to respond to these behavioral problems.

A solution to this problem is well within reach: Evidence from at least one well-designed study has shown that a training and support program that teaches nursing home staff individual patient-centered behavioral management techniques can dramatically reduce the use of antipsychotic drugs in nursing home residents with severe dementia. The same type of training likely would work just as well in other settings.

The continued misuse of dangerous antipsychotic medications in elderly dementia patients — one of the most vulnerable groups of individuals in North America — represents a collective failure of federal, state, state and local government agencies; advocates for the elderly; professional health care organizations; and individual health care providers.

Until this failure is addressed, family members of elderly patients with dementia must take proactive steps to protect their loved ones from being exposed to antipsychotic drugs. These steps could include:

• Monitoring the patient’s prescription drug regimen.

• If the patient is prescribed an antipsychotic drug, speaking to the prescribing physician about using alternative interventions, such as appropriate behavioral management interventions, and if the physician refuses, seeking another health care provider.

• If necessary, moving the patient to a different long-term care facility that has the resources and staff to deliver patient-centered behavioral management techniques shown to be effective.

I’ve been blogging about this issue for a while. You can read some of the facts here.

*Note: Seroquel [quetiapine] is in the same family of drugs.

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Challenges & Solutions, NHBPS, Toward better care

35 things that may cause people with dementia (and you) to become uncooperative, upset, angry, anxious or “aggressive”

Are people who live with dementia sometimes uncooperative, upset, angry or even “aggressive?” Yes. But then again, so am I. If provoked, do people who live with dementia sometimes “lash out?” Yes. But then again, so do I, although extremely rarely in a physical way because I have other means to express my anger. If I didn’t have those means, who knows what I might do?

I don’t believe, in general, that responsive behaviour attributed to dementia is the result of whatever brain disease (e.g. Alzheimer) is causing it. I don’t believe it because people who don’t live with dementia, including me, would behave in the same ways under similar circumstances.

Many care partners, care workers, and medical professionals make the mistake of blaming the responsive behaviour of people who live with dementia on their disease. Jumping to this more-often-than-not erroneous conclusion means the root cause(s) of the behaviour remain(s) unknown.

People in the mid to later stages of Alzheimer disease (for example), may find it difficult, if not impossible, to identify and articulate the cause of behaviour that is problematic to others–sometimes that’s a challenge for the rest of us as well! It’s incumbent on care partners, care workers and others to become “dementia detectives,” and try to figure out what underlies the behavioural expressions we find problematic in the people we interact with who live with dementia.

Here’s a “starter list” of possible causes:

  1. physical pain
  2. emotional pain
  3. depression
  4. stress
  5. medication side effects (Seroquel/quetiapine or Risperdal/risperidone for example)
  6. boredom / inactivity
  7. too much or too little sensory stimulation
  8. being too hot or too cold
  9. being hungry or thirsty
  10. being made to wear clothing that doesn’t fit (too tight, too loose)
  11. being made to wear clothing that is soiled or belongs to someone else
  12. sleep issues (too much or too little)
  13. constipation
  14. incontinence / needing to be changed (video)
  15. changes (in environment, routine, and/or care partners)
  16. vision problems
  17. hearing problems
  18. sense of loss (incapacity, friends, abilities, roles)
  19. too much noise / sudden loud noises
  20. being scolded / reprimanded yelled at
  21. being surprised / frightened
  22. being threatened
  23. being treated or spoken to like a child
  24. being told what to do
  25. being forced to do things they don’t want to do (e.g. take a bath/shower, get up, go to bed)
  26. being forced to sit for long periods with nothing to do
  27. being forced to eat unappetizing, tasteless food they don’t like
  28. being forced to be with people they don’t want to be with
  29. being forced to take medication they don’t want to take
  30. being physically restrained
  31. feeling overcrowded
  32. not being allowed privacy
  33. feeling tired or unwell
  34. having “a bad day”
  35. personality conflicts

This list isn’t exhaustive. To add to it, ask yourself what would make you feel uncomfortable, anxious, unwilling to cooperate, angry, “combative,” and/or upset.

Correctly identifying the root cause of behavioural expressions that are problematic for us as care partners can help us find solutions other than inappropriately medicating people with antipsychotic drugs.

Feel free to add to the list in the comments below.

101 potential causes of behaviour by people living with dementia that institutional care staff may find challenging

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Advocacy, Antipsychotic drugs, Toward better care

20 behavioural expressions for which antipsychotic medications are unwarranted and ineffective in people who live with dementia

Antipsychotic medications are meant to treat psychosis, not dementia. Dementia care pioneer Dr. Allen Power explains:

“What happens in the brain chemically–even when people are labeled “delusional”–is not the same in diseases that cause dementia as in classical psychosis where dopamine activity is increased, causing hallucinations and delusions. The primary action [of antipsychotics] in that disorder is achieved by blocking dopamine activity.

But no form of dementia involves heightened dopamine activity; in fact many people, including those with Lewy body dementia, have decreased dopamine activity. So dopamine-blocking drugs not only have no chemical rationale, they also are particularly toxic for such people.”

The responsive behaviour sometimes expressed by people who live with dementia is more often than not the same kind of behaviour most people who don’t have dementia would express under similar circumstances. If you don’t believe me, take this four-minute survey and see for yourself.

Not only are antipsychotics unwarranted for the behavioural expressions listed below, they are ineffective in changing the behaviour for the reason stated above. In fact, they may exacerbate the behaviour they are being inappropriately given to treat (see the side effects for Seroquel/quetiapine and Risperdal/risperidone for example). Furthermore, administering these medications results in sedation that makes it virtually impossible to find and address the real cause(s) of the behaviour.

Here is a list of behavioural expressions for which antipsychotics SHOULD NOT be prescribed for people who live with dementia because they are largely ineffective in treating the root causes:

  1. try to get out or away from wherever they are (note: often labeled as “wandering,” “exit seeking,” “elopement,” and other such terms)
  2. decline help others may think they need (note: labeled as “resists care,” or “refuses care”)
  3. go into places or try to go into places other people think they shouldn’t go (e.g. other residents’ rooms in institutions, locked rooms, private spaces, etc.; note: also often labeled as “wandering)
  4. mistake things for other things (e.g. think the TV remote is a telephone, that things that are not food are food, etc.)
  5. use things in ways they are not intended to be used (e.g. put a wet towel in the microwave to dry it)
  6. become unhappy or moody
  7. see or hear things differently than others do and are not frightened by their differing perceptions (e.g. think shadows on the wall are people; note: may be called “hallucinations”)
  8. get angry from time to time (as opposed to continuously flying into violent rages for no apparent reason)
  9. not want to do things other people believe are “for their own good” (e.g. take medication, have a bath or shower, go to sleep, get up in the morning, eat what is put in front of them, change their clothes, etc. note: also often labeled as “resists care,” or “refuses care”)
  10. believe things that are untrue (e.g. that a dead spouse, parent, friend, etc. is still alive even though they are long gone; note: these kinds of beliefs may sometimes be called “delusions”)
  11. become mildly or moderately anxious
  12. hoard or hide things
  13. call out, scream, yell, or verbalize repeatedly in other ways
  14. make noises such as clapping and tapping
  15. be unable to sit still
  16. want to stand up or walk
  17. go to the bathroom in public and/or other inappropriate places (sometimes described as “voiding at will”)
  18. take their clothes off in public
  19. eat things that aren’t food (see 4 above)
  20. curse and/or say socially inappropriate things that others may experience as being insulting or hurtful

This list is based on an excellent article by Dr. Allen Power (which also addresses the small number of situations in which the use of antipsychotics may be helpful), and a concise, practical, bullet-point fact sheet produced by Alberta Health Services  as part of their Appropriate Use of Antipsychotics (AUA) Toolkit.

Dr. Power is the author of Dementia Beyond Drugs: Changing the Culture of Care and Dementia Beyond Disease: Enhancing Well-Being, both of which I highly recommend. He is also the Schlegal Chair in Aging and Dementia Innovation at the Research Institute for Aging.

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Advocacy, Antipsychotic drugs, Toward better care

40 risperdal side effects

I advocate against the inappropriate use of antipsychotics in treating people who live with dementia because I have seen first hand the devastating impact these drugs may have. Sadly, many dementia care partners are forced to turn to medication out of desperation. In order to be be able to make an informed decision, it’s important to know the side effects of the medication in question.

Antipsychotics risperidone (Risperdal) and quetiapine (Seroquel) carry black box warnings in the US because, like other antipsychotics, they increase the risk of mortality in elderly patients with dementia. Furthermore, recent research shows these medications are largely ineffective in treating behavioural expressions in people who live with dementia. Not surprisingly, geriatricians worldwide recommend against their use, saying they should only be given as a last resort after all non-pharmacological strategies have been tried. Unfortunately, too many people who live with dementia are still inappropriately prescribed these drugs, just as my mother was.

Risperidone (Risperdal) is an atypical antipsychotic drug that is meant to be used to treat schizophrenia and symptoms of bipolar disorder. In Canada, it is “restricted to the short-term symptomatic management of aggression or psychotic symptoms in patients with severe dementia of the Alzheimer type [who are] unresponsive to non-pharmacological approaches and when there is a risk of harm to self or others.” (Bolding mine.) More information on Canada’s position here.

The United States Federal Drug Administration includes this “black box warning” on its Risperdal information sheet:

In November 2013 pharmaceutical giant Johnson and Johnson was fined $2.2 billion by the United States Department of Justice for illegally marketing three drugs one of which was Risperdal (for use in people with dementia).

Risperdal may produce side effects similar to the very conditions it is meant to alleviate in people who live with dementia.

Here are 40 of the potential side effects of Risperdal (there are more here):

  1. aggressive behaviour
  2. agitation
  3. anxiety
  4. changes in vision, including blurred vision
  5. difficulty concentrating
  6. difficulty speaking or swallowing
  7. inability to move the eyes
  8. increase in amount of urine
  9. loss of balance control
  10. mask-like face
  11. memory problems
  12. muscle spasms of the face, neck, and back
  13. problems with urination
  14. restlessness or need to keep moving (severe)
  15. shuffling walk
  16. skin rash or itching
  17. stiffness or weakness of the arms or legs
  18. tic-like or twitching movements
  19. trembling and shaking of the fingers and hands
  20. trouble sleeping
  21. twisting body movements
  22. back pain
  23. chest pain
  24. speech or vision problems
  25. sudden weakness or numbness in the face, arms, or legs
  26. constipation
  27. cough
  28. diarrhea
  29. dry mouth
  30. headache
  31. heartburn
  32. increased dream activity
  33. increased length of sleep
  34. nausea
  35. sleepiness or unusual drowsiness
  36. sore throat
  37. stuffy or runny nose
  38. unusual tiredness or weakness
  39. weight gain
  40. vomiting

Giving risperidone (Risperdal) to people who live with dementia and who may be unable to report the side effects they are experiencing is cruel and in many cases completely unnecessary. Read more about why drugs like Risperdal are still inappropriately prescribed to elderly people who live with dementia.

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Advocacy, Antipsychotic drugs, Toward better care

juiced and joyful over jamda


It’s not every day that a non-academic, non-researcher, “nobody” without a whole bunch of letters after her name gets an article published in a professional journal. When it happens to you, well, it’s something to celebrate. At least it is when that you happens to be ME! And especially when the subject matter impacts millions of people who live with dementia around the world.

I’m delighted that the Journal of the American Medical Directors Association (JAMDA) published my editorial Efforts to Reduce Antipsychotic Use in Dementia Care are Starting to Bear Fruit, but a Lot of Work Remains to be Done in its March 2017 issue, not just because it again vindicates and validates everything I have said about my mom being inappropriately sedated with antipsychotic drugs for four years, but because it’s an indication that more members of the medical profession are beginning the see the light.

The link has been shared on twitter, Facebook and LinkedIn, generating interest and views around the world including in Australia, Canada, Ireland, United Kingdom, United States, and Spain. Yippppeee!

According to Altmetric, the article has a high attention score and is in the top 25% of all research outputs scored by the online tool. More yipppeees! A little street cred goes a long way when you’re a one-woman band marching to a different drummer as the systemic symphony plays a BigPharma tune.

The article may be viewed and downloaded at this link for free until April 15, after which it will be pay per view or via subscription to JAMDA. I invite you to take a look, and thank you for your ongoing support of my work and of

More information on antipsychotics here.

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Advocacy, Antipsychotic drugs

drugging the elderly: how much is too much?


The prescription drug problem in the province of Quebec, particularly with respect to elderly people, which I first blogged about here and which is highlighted in the video below, is tragically out of hand.

A 2015 study by McGill University researchers found that “nearly 12 per cent of Quebec physicians’ prescriptions were “off-label” and of these, more than 80 per cent have no scientific evidence for non-approved use. A Montreal Gazette article on the study quoted researchers as saying “the most common medications prescribed off-label are those affecting the central nervous system specifically: antidepressants, antipsychotics and anticonvulsants. Patients taking these kind of medications reported various unwanted effects including weight gain, nausea, abdominal pain, grogginess, dizziness, loss of balance and confusion.”

My mother, who lived with dementia of the Alzheimer type, experienced all of the side effects above as a result of being given antipsychotics, which are prescribed inappropriately at an alarmingly high rate to thousands of Quebec seniors who live with Alzheimer disease. Philippe Voyer, researcher, nursing professor and supervisor of the Mentorship Clinique at the Quebec Centre for Excellence in Aging describes the levels at which antipsychotics are prescribed to elderly people who live with Alzheimer disease as “abusive.”

This is not a new issue. One of the lead researchers of the 2015 study above did a similar study in 1990, which concluded that:

“The prevalence of questionable high-risk prescribing [in Quebec], especially of psychotropic drugs, is substantial among elderly people. This may be a potentially important and avoidable risk factor for drug-related illness in elderly people.”

Things seem to have worsened since then. The 1990 and 2015 research findings are echoed in the Government of Quebec’s 2015 report “Prescription Drugs: Optimizing Costs and Use for the Benefit of the Patient and the Sustainability of the System,” which states:

“The increased use of some prescription drugs is questioned, especially in some population groups, including the elderly and children.”

Furthermore, according to a report by the Ontario Drug Policy Research Network, the use of antipsychotics among the elderly in Quebec, which was already the highest in Canada in 2009, increased by 31% over five years. Here’s what that looks like:

This is a costly practice. More important than the financial burden of this type of drug abuse, however, is the human cost, particularly in children and the elderly, and especially for extremely vulnerable elders who live with dementia, and are thus unable to speak for themselves. Far too many are inappropriately prescribed antipsychotic medications when instead they should be more humanely treated with kindness, compassion and understanding.

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