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 http://creativecommons.org/licenses/by-nc-nd/4.0/ 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.
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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.
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*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.
https://myalzheimersstory.com/2018/03/18/alzheimer-didnt-do-this-drugs-and-dementiajail-did/
https://myalzheimersstory.com/2017/06/10/drugs-not-dementia-robbed-me-of-my-mom-and-her-of-her-mind/
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Take my short survey on behaviour here.
My Alzheimer's Story 