Category: NHBPS

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

My Alzheimer's Story

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.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 

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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Advocacy, Antipsychotic drugs, NHBPS, Toward better care

10 thought-provoking links on dementia “wandering”

My Alzheimer's Story

The image above is of my mom heading back to her kitchen from her garden in summer 2010. She loved to be outside. She adored being on the go. She rarely sat still. In the early and mid “stages” of Alzheimer disease she walked for an hour every day. Then she went into a “care” facility, where she was labelled a “wanderer.” She was prescribed antipsychotic drugs to stop her from walking around, exploring her environment, and doing what came naturally to her.  The drugs seriously impacted her quality of life. It wasn’t long before she was physically restrained by being confined to a wheel chair, in addition to being chemically restrained by the drugs. This tragedy is partly why I became a dementia care advocate.

Here are ten links I hope will make you think:

1 ) “wandering” is not a symptom of dementia

2) please remain seated for the rest of your life

3) 20 questions to ask yourself about “wandering”

4 ) stop in the name of love

5 )  37 alternatives to the dementia “wanderer”

6 ) #1 reason people with dementia try to escape

7 ) 20 behavioural expressions for which antipsychotic medications are unwarranted and ineffective in people who live with dementia

8 ) walk a mile in my alzheimer shoes

9 ) 10 ways to get to the bottom of behaviour and problematic situations in dementia care at home and in LTCFs

10 ) death by recliner

P.S. Dear everyone who uses pejorative and damaging labels to describe the behaviour of people who live with dementia, PLEASE STOP. Thank you.

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Advocacy, Antipsychotic drugs, Information, NHBPS, Toward better care

4-minute survey results debunk decades-long notion that BPSDs are symptoms of dementia

My Alzheimer's Story

Norse mythology contends that thunder and lightening are produced by the bearded god Thor as he strikes an anvil with a hammer while riding a chariot through the clouds.

Likewise, people used to believe the earth was flat, and that the sun revolved around it rather than vice versa. Also, at various times in history, it was thought that bloodletting was curative, smoking tobacco was beneficial, radioactive drinks were good for you, and ingesting heroin, cocaine, and mercury improved your health and well-being.

We continue to be mistaken about scores of things. For example, many still believe the responsive behaviour of people who live with dementia is caused by their dementia, when, for the most part, that equation just doesn’t add up.

The roots of this erroneous belief lie in the work of researcher Dr. Jiska Cohen-Mansfield, who, in the mid-1980s developed a 29-item scale to measure agitation in nursing home residents. The Cohen-Mansfield Agitation Inventory (CMAI) spawned others such as the Nursing Home Behaviour Problem Scale (NHBPS), which also comprises 29 items. In the late 1990s, through no fault of Dr. Cohen-Mansfield’s, the types of behaviour tracked by research tools such as the CMAI and other similar scales came to be known as the “Behavioural and Psychological Systems of Dementia (BPSDs).” More on that came to be in a future post.

When I first saw the BPSDs listed on the NHBPS, which is virtually identical to the CMAI, I was shocked. As far as I was concerned, all one had to do is read down the list to see that any “normal” person would behave in the same way under circumstances such as the ones my own mother found herself in while in long-term care. I set out to prove my point in late 2016.

I built “A Short Survey on Behaviour” that mirrors the NHBPS. My objective was to demonstrate that the types of behaviour called BPSDs are not symptoms of dementia at all. If anything, this kind of behaviour is a “symptom” of being human, and when exhibited by people who live with dementia is a result of the way we treat them and/or of the environments in which they are often confined.

I invited participation online using SurveyMonkey. Between December 16, 2016, and May 17, 2017, a total of 1,172 people responded.

Here are the results for five of the 29 questions (the rest may be seen in the slide show below):

Behaviour listed on NHBPS

 “A Short Survey on Behaviour”mirror question

“Yes” 

1

 Resists care If a stranger tried to take your clothes off, would you resist?

98%

8

 Hits, slaps, kicks, bites, or pushes If you were physically threatened, might you hit, slap, kick, bite, or push someone to defend yourself?

91%

9

 Fidgets, is unable to sit still, restless If you had to sit for long periods of time with nothing to do, might you become restless, want to get up or start to fidget?

95%

25

 Paces: walks or moves in wheelchair aimlessly back and forth If you were bored, might you try to find something to do?

98%

26

 Tries to escape physical restraints If you were physically restrained against your will would you try to get free?

98%

 

I also created a series of vignettes (still in progress) each of which corresponds to a “problem” behaviour on the NHBPS, and explains through the eyes of Alzheimer Annie the real causes of the behaviour.

The results of “A Short Survey on Behaviour” show that the types of behaviour on the CMAI and NHBPS (i.e. BPSDs as they are now known), are NOT symptoms of dementia. Rather, they are normal human responses to certain sets of circumstances, the environment, physical factors and unmet needs. This assertion is supported in recent research by Dr. Jiska Cohen-Mansfield herself, and discussed at length in Dementia Beyond Drugs and Dementia Beyond Disease, two excellent books by Dr. Allen Power, MD. It also forms the foundation of the work of dementia care pioneers such as Andy Tysoe, Dr. Bill Thomas, Dr. David Sheard, Dr. Eilon Caspi, Dr. Helen Kales, Judy Berry, Professor June Andrews, Kate Swaffer, Leah Bisiani, Naomi Feil, Professor Philippe Voyer, Dr. Shibley Rahman, and the amazing Teepa Snow.

I believe we must stop using the term “BPSD,” just as we must stop using “wandering” to label as “aberrant” behaviour in people who live with dementia that in others is viewed as normal. BPSD is an inaccurate, pejorative descriptor that:

  • contributes to the stigma associated with dementia
  • results in people who live with dementia being sedated with largely ineffective antipsychotic drugs that have a multitude of debilitating side effects and that increases the risk of death
  • stops us from discovering and addressing the root causes and unmet needs that lie behind the behaviour of individuals living with dementia

As I said above, I’m not the first one to come to this conclusion. After reading a draft of this post, Dr. Eilon Caspi referred me to several papers by Dr. Cohen-Mansfield and a blog post by Dr. Power.

Dr. Cohen-Mansfield wrote in a 2001 research paper: “A significant proportion of nursing home residents who present inappropriate behaviors suffer from sensory deprivation, boredom, and loneliness,” and in 2005: “A substantial proportion of behaviors in dementia arise when care does not appropriately address the underlying causes.”

Dr. Power’s brilliant 2015 blog post entitled “Medicalization of Feelings: BPSD or BPSOD?” lays out the same argument in much more detail:

“Blaming upset on brain changes is a barrier to our critical thinking skills; it blinds us to the physical, operational, and relational attributes of the environment and the effects they may have, and is a slippery slope to antipsychotic drug use.”

Interestingly, Dr. Power also describes in his post the angry pushback he got from some colleagues who could not see beyond their own entrenched and erroneous beliefs regarding BPSDs. I experienced the same in my four-year long fight to have my mother taken off the inappropriately prescribed antipsychotics that significantly reduced her quality of life. Advocates have a difficult row to hoe.

It’s important to mention that dementia may “enable” and “amplify” actions and words that care partners and others find challenging or problematic. Dr. Caspi puts it this way: “Unmet human needs and frustrations intersect with the person’s cognitive disabilities to generate these behavioral expressions / responsive behaviors.”

However, it’s equally important to emphasize that while dementia may enable, amplify or increase the frequency of such behaviour, it is not the root cause of the behaviour, a fact clearly demonstrated by my survey results. 

How we label things has a massive impact on our beliefs and perceptions. I therefore propose that we immediately cease using the acronym BPSD, and instead name the behaviour for what it actually is: Behavioural and Psychological Symptoms of Being Human, which, when Repeatedly Exhibited by a Person Living with Dementia, Likely Indicate Unmet Physical, Emotional and/or Psychosocial Needs and/or that S/He Feels Threatened and/or Afraid.

Enough with mythology, mistaken beliefs, misleading acronyms, and miscalculations–It’s time to frame things in a way that leads us to the right answers and humane solutions.

P.S. I’m open to alternatives for BPSBHREPLDLIUPEPNSHFTA.

A Short Survey on Behaviour respondent demographics

  • Of the 1,172 survey respondents, only 2% answered “yes” to the question “As far as you are aware, do you have any form of dementia? (e.g. Alzheimer disease);” 93% reported they did not have dementia; 5% said they didn’t know
  • Respondents reported being from various countries around the world with the majority from the USA (39%), the UK (28%), Canada (25%) and Australia (6%).
  • Most were female (89%), and 84% were over the age of 40.
  • A little over 39% said they were or had been unpaid care partners, while 31% said they were or had been paid care workers.

Survey results

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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”

My Alzheimer's Story

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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“wandering” is not a symptom of dementia

My Alzheimer's Story

“Mom won’t sit in that room, she won’t stay there,” I said to the Director of Nursing (DON) in the autumn of 2012 when she showed me the room the person in control of my mother’s care had chosen for my mother.

“Oh, she’s a wanderer,” the DON smiled at me over her shoulder. “We know how to handle them.”

A wanderer? I didn’t know what that meant. I knew Mom loved to be on the move, that she rarely sat still, that she had been like that her entire life: a go-getter, a force to be reckoned with, the life of the party; she had boundless energy. I found the DON’s word curious. Had I known then what I know now, there would have been a fireworks’ of red flags. But I didn’t. I trusted the DON, who claimed to be an expert. What a mistake placing my trust in her would prove to be.

I didn’t understand what she meant by “handling them” either. I didn’t know that being labeled “a wanderer” would lead to my mom being sedated with antipsychotics to the point where she could no longer stand, let alone walk. I didn’t know how the behaviour of people with dementia is misinterpreted and misrepresented, and that as a result many are medicated into compliance for the sake of convenience and cost reduction. I never dreamed my mother would be physically and chemically restrained, both of which are forms of abuse.

I didn’t know then. But I know now. And every time I see the words “wanderer,” or “wandering,” “elopement,” or “exit-seeking behaviour” I want to scream: “Don’t you see? People who live with dementia are just like you and me. They want to be free, not chained. They want to live with purpose, not pity. They want to participate in life, not be sidelined!”

Sometimes my anger and frustration get the best of me. Today is one of those days. I wish people would ask more questions and come up with better answers.

P.S. Dear everyone who uses pejorative and damaging labels to describe the behaviour of people who live with dementia, PLEASE STOP. Thank you.

https://myalzheimersstory.com/2016/05/24/20-questions-to-ask-yourself-about-wandering/

https://myalzheimersstory.com/2017/07/17/10-thought-provoking-links-on-dementia-wandering/


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Advocacy, Annie & Cricket, Antipsychotic drugs, NHBPS

look who’s talking now

My Alzheimer's Story

It’s been awhile since we’ve heard from Alzheimer Annie, whose misadventures in long-term care are based on real life situations I have witnessed or which have been recounted to me by others. This is another in the series of vignettes I’ve create based on the Nursing Home Behaviour Problem Scale (NHBPS), which is used to measure agitation in people who live with dementia. The vignettes are told from the point of view and in the voice of a fictional character called Annie, a woman in her mid-eighties who lives with dementia of the Alzheimer’ type in the mid- to later-stages of the disease. Annie resides in a long-term care facility somewhere in Canada. This vignette is called “look who’s talking now.” There’s a link to all the vignettes at the end of the post.  

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look who’s talking now

I look down the hall. Not a soul in the place. I’m alone in this chair. I’ve been here for ages. Mummy must wonder where I am.

“I’ve got to get out of here,” I say aloud. “It’s getting dark, almost time for supper.”

A girl dressed in blue appears out of nowhere. “What was that, Annie? What did you say?” She asks as she passes by.

“Nothing,” I say. The blue girl stops. She turns her head, looks at me.

“That’s not true, Annie. I definitely heard you say something about supper.”

“Then why did you ask?” I whisper.

“What’s that?” Why does she always sound so mean? I feel like I’m in the principal’s office.

“Then why did you ask?” I repeat a little louder. Maybe she’s hard of hearing.

“Don’t be cheeky, Annie,” the girl says. “It’s not nice. You had lunch half an hour ago. Supper isn’t ’til five. You know that. Supper is another four hours from now.” She starts down the hall. Good riddance.

“I don’t care when your stupid supper is,” I say under my breath. “All I know is I’ve got to get out of here and get home to my mum. She’s going to be worried about me.”

The girl stops again. She turns around and comes back until she’s right in front of me. She plants her feet wide. She has white running shoes on. The laces have pink cats on them.

“What did you say? Did you just call me stupid?” Her words are sharp and pointy. I look straight ahead, stare at a place below where her belly button must be. Her hands are on her hips. Her fingernails are gold with silver with sparkles.

“I didn’t say anything,” I lie.

“I’ve had just about enough of you, Annie. You’re really trying my patience,” the girl says.

Piffles. You’re the one who’s trying MY patience. You make me crazy. This place makes me crazy. It’s full of crazy people. All I want to do is get out of here. I look up at her. Careful. Don’t get into trouble. Back down the hall she goes. Her running shoes squeak.

“Thank God I’m off tomorrow,” she says to the air. Thank God is right. You won’t be here to boss me around. The girl turns into the room with the desk and the drawers and all the papers in it. That’s where they sit.

“Annie’s talking to herself,” I hear her say.

“Again?” Not the blue girl. Someone else. The tall one maybe.

“Yeah,” the blue girl says. “And she called me stupid.”

“Okay,” says the second voice, “I’ll make a note of it. It’s time for her meds anyway. I’ll give her an extra PRN, that should shut her up for awhile.”

“Yup,” the blue girl says, and they both laugh.

https://myalzheimersstory.com/2017/01/08/alzheimer-annie-invites-you-in/

https://myalzheimersstory.com/2016/10/17/death-by-recliner/

https://myalzheimersstory.com/2016/04/26/waging-war-at-alzheimers-bath-time/

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Advocacy, Antipsychotic drugs, NHBPS, Toward better care

alzheimer annie invites you in

My Alzheimer's Story

Alzheimer Annie is a fictional character I created to help people understand what being in a long-term care facility (LTCF) might feel like. Annie is a woman in her mid-eighties who lives with dementia of the Alzheimer’s type in the mid- to later-stages of the disease; she resides in a fictional LTCF somewhere in Canada. Her experiences are based on real-life scenarios, which I either witnessed first-hand or have personal knowledge of. The vignettes in which I have placed Annie mirror the twenty-nine items on the Nursing Home Behaviour Problem Scale (NHBPS), which is used to measure agitation in people who live with dementia.

My goal in creating and sharing these vignettes is to show how behaviour that is attributed to Alzheimer’s disease and other dementias, and for which people who live with dementia are treated with antipsychotic drugs, is in most cases normal human behaviour which can be understood and addressed in safer, more effective non-pharmacological ways if we listen and pay attention to what people who live with dementia are trying to communicate.

Here are the twenty-nine “problem behaviours” on the NHBPS, each with a corresponding vignette that describes the behaviour from Alzheimer Annie’s point of view (some are “still in the works”):

I created a model to help myself and others handle these kinds of situations more effectively. It’s called “BANGS.” I share the BANGS techniques in a one-hour webinar here. It’s free. All I ask is you tell me how it works for you if you try it. Here’s what one caregiver said:

“I am a daughter/caregiver who has been with my father for two years since he had two strokes which left his right side paralyzed. He had been diagnosed with dementia before the strokes, and he also has severe aphasia as well as other issues. We both dreaded every day. In desperation a few weeks ago I discovered your site. I found your BANGS technique and it worked beautifully. Thank you.”

Besides using the BANGS model, you can take this three-minute survey to see how you might behave under similar circumstances here. Many people experience the survey as a real “eye-opener.”

Subscribe to my updates and get free downloads here.

©2016 Susan Macaulay / MyAlzheimersStory.com

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Advocacy, Information, NHBPS

comments: a short survey on behaviour

My Alzheimer's Story

If you have not already done the short survey on behaviour, you can do it here.

These are the “short survey on behaviour” comments as of May 25, 2017; the quantitative results are here. The comments from all quarters have been overwhelmingly positive, supportive and constructive. Most people “got” the idea behind the questions; a few didn’t.

“most interesting” comments

Of the hundreds of comments I’ve received so far on the survey itself as well as via social media, these are the ones I find “most interesting.”

  1. Am I human – like the rest of everybody? YES!
  2. I love this and believe it is a great training tool. It brings to the forefront that persons with Alzheimer’s or Dementia are not defined or exhibiting behaviors based on a diagnosis but based on being a human being! Thank you for sharing.
  3. We need to all understanding that people with dementia are firstly people. Their behaviours only appear bizarre because they can make no sense of the world around them. Patience is what is needed – that and an awareness that people with dementia are not a threat, they just need to be treated as vulnerable people. Some treat dogs with more compassion. I could go on …!
  4. I don’t understand the point of this survey. The questions are all very pointed questions that talk about specific behaviors common to both caregivers as well as dementia patients and seem to want to equate some sense of “normalcy” to them, as if the idea was for the person without dementia to have a sense of sharing the experience of the person with dementia. This is really not possible. Not really. Those of us without dementia still have our ability to reason and think logically, and cannot truly understand what it’s like to not have that ability.
  5. Good way to get through the message that expressions of feelings in persons living with dementia are normal reactions to what they perceive is happening in their reality. We just need to find out what they are trying to tell us
  6. Fascinating to consider that we pathologize behaviour in persons with dementia that we accept from ourselves, even if it did compromise our safety or dignity. I know from personal experience it is tough to be a caregiver, but it also strikes me that one of the biggest problems we have with people with dementia is their non-compliance with what we think is best. Interesting mirror held up with this survey.
  7. So why should people with dementia be expected to behave otherwise? Rhetorical question. Good survey.
  8. There are so many proven evidence-based studies which prove batch living denies the basic rights of the individual. Yet we continue to build Communities’ where people are placed together based on two insignificant factors age & undesired disability. Dementia villages are the new acceptable forms of batch institutionalised form of living.
  9. This is such a complicated issue that, like just about everything else on the planet, has to do with money. And the fact that people over 50 are seen as low-value in our society. Ideally, we would have caring homes for people with dementia, with proper trained supervision, and it would be free. Sadly, this is needed for many chronic mental and physical diseases — and for the aged themselves. But older people are not sexy and so politics – and money – stand in the way of us having a civilized society. It is not because we have heating that we are civilized. It is how we treat our families and each other.
  10. As humans we feel angered and threatened if someone attempts to force anything upon us and will react in any way to show this. Even something that may appear to be a simple task may easily be misinterpreted or not understood by a person living with dementia, we must remember this.
  11. We expect people with dementia and older adults in general to accept a lot of things that we ourselves would not find acceptable.

All survey respondent comments (the most recent appear at the top of the list)

  1. Congratulations for your blog. It is so inspiring … Thanks!
  2. Wonderful survey
  3. Difficult to help people who do not or can not understand what you are doing.
  4. I wish I could have physically continued to manage the care. I am very OFTEN dismayed at the care that is provided at the facility. I am not certain I could survive it!!! Secure unit aides for Dementia need to provide extra patience. Extra training. I can tell the ones who’ve “got it” and they are few and far between. I hope the purpose of this survey is to draw attention to the nursing home/assisted living deficiencies. It’s not unusual in the US to attempt multiple living arrangements before settling on best of the worst. Thank you for your continued care and attention on behalf of all who are still coping, Susan. ??
  5. I am the Primary RPN on a 21 bed secured unit in a long term care facility.
  6. this is a wonderful survey to have you think about another person’s behaviour as normal as your own. thanks for the opportunity to participate
  7. Returning to college in my 60’s degree in Gerontology, learning validation, reminiscence, and the immense value of listening/hearing to quickly assess a situation has been a leading goal of mine to respect an individual that is confused, trying to communicate where words are jumbled. Yes, I do become frustrated – yet never and I do mean never project any ‘unbecoming attitude or behavior’ while on the job. I always say to myself, this person could be my mother a family member or me! How would I want this situation to play out. I share any frustrations that I may have had with a partner…that listens and validations my frustrations, concerns . Each day is a new day that I start with a smile, a pat on the shoulder and positive words to begin my time with a small group or individual in the services that I perform. I feel that I may occassionaly overreact in my personal world to something that I may later wish I kept my cool. Yet this is life and things happen. Our life and world is filled with a mixed back of kioski. Being cognizant of this does put a spin on better behavior in the professional world., and that does work for me.
  8. Watapowpow. Fabulous. Would you allow Handicap-Vie-Dignité to have this sondage translated in French? Plus much…much more re training, etc. Johanne Ravenda
  9. this is amazing, i am sharing this with my nursing staff and colleagues.
  10. Having been trained in Gerontology and through the Alzheimer’s Association, all the training in the world never quite prepared you for the ongoing changes, because of the many different types of dementia, the meds the person is taking,the health issues the person has, as well as the personality of the person. After 7 years and no formal diagnosis, I feel like I am in a boat with no ores, and a major fog just blew in!!! Where oh where is the light
  11. currently taking care of mom, senile, and my husband, who has dementia. No help from family whatsoever
  12. My 85 yr old grandma has mid stage AZ and lives in a facility. I am her caregiver, taking her to appointments,consulting with staff, managing her finances, etc.
  13. Medications given are numerous I have found when refused by patients sometimes more beneficial
  14. I’d never have asked myself the above questions had I not read them here. Yes, certainly, they change my perspective, from that of a caregiver to how people with dementia might think or think of doing. With the best of our intentions and loving care, we never think of what happens when our own minds are blank, lost a sense of familiarity, of security.
  15. As I get older I some times forget and wonder if it is early stage Alzheimer’s.
  16. I volunteer in a nursing home (lifestyle)
  17. my husband has Lewie bodies and Parkensons. I deal with dementia all the time and I worked in Alzhemers ward in nursing home .. 13 years..
  18. Go Sue go! We need to change that situation and lessen the harm made to people with dementia. One thought is anyone might end up with it, and this should push us to make things better before we get to the other side of the fence
  19. I am far from a YES man but all my answers have been affirmative.
  20. I have seen first hand my Mom and other residents with various types of dementia exhibit several of these things. My Mom often says she get so confused. It must be so hard for her.
  21. I would like to see the article you are submitting
  22. excellent survey!
  23. Great questions – puts life in perspective as one of my dementia patients.
  24. We expect people with dementia and older adults in general to accept a lot of things that we ourselves would not find acceptable.

  25. And I wrote a book about dementia and what I learned while taking care of my mother called the Wonders In Dementialand.

  26. I remember clearly the era of re-orientation for dementia and how painful that was. people who cared for dolls and were comforted from them had the dolls taken away- reminders of the days of the week- that was the main conversation. always felt it was more important to connect where they were at if possible, recalled calming my grandfather who was “beside himself” by telling him I had already put the horses in the barn. He was panicked that it was getting dark and they were out and he couldn’t get to them. Took less than a minute.

  27. My Aunt lived in 4 different memory care facilities. The things that I witnessed were scary and it was extremely difficult to leave her. She did live in a private pay facility where she got excellent care for the last 7 months of her life. The regulations allow these facilities to run at bare bones minimum staff and the staff isn’t required much trained. “Personal Support Specialists” are the direct care workers here in Maine. They can be hired right off the street with no experience. My Aunt lived in a memory care facility for approximately 5 months, it was awful. The morning that I went there and she had missed breakfast, so I asked for some breakfast for her, it was about 10am. She was offered goldfish crackers for a meal. That was the tip of the iceberg for me and my family. This was after numerous incidents we tried to work through. We moved her out that week. These places are sadly able to run here in Maine as basically a boarding home. It’s infuriating.

  28. Thanks. You make very good points!

  29. Unfortunately some of these questions are leading.

  30. Very eye opening!

  31. Thought provoking…thank you Would be helpful if you could make the questionnaire something shareable for training sessions…

  32. Well done! Thought provoking! Happy new year 2017.

  33. The questions are frequently murky, e.g., #28, which makes no sense to me. Also, for example, context is not given in #24. If you cooperate when someone suggest you slit your wrists, there is a problem, whereas when the suggestion is, “Put on your seat belt”, it’s common sense that you cooperate.
    Interesting and thought provoking!

  34. Good Quiz.. I was thinking of my mom with dementia.. thanks

  35. Although I answered yes to most of the questions, you didn’t ask if I was doubly incontinent and if I would sit making awful noises for hours and for no apparent reason as my husband does

  36. This is a great reminder thank you

  37. It’s easier said than done.

  38. This is a lovely survey to promote conversation. It would go well with the virtual dementia program where you go through rooms trying to do activities with the “equipment” on that mimics dementia filters.

  39. Excellent survey – this is a survey that should be mandatory for ALL staff in ltc facilities to complete. It’s easy for care workers to view normal reactions as problem behaviours especially when overworked and uneducated. Well done.

  40. excellent survey!

  41. Great questions – puts life in perspective as one of my dementia patients.

  42. Excellent survey – emphasizing that people with dementia are like the rest of us (or we are like them).

  43. Very interesting.

  44. Curious set of questions

  45. My mother has early stage dementia

  46. Makes u think

  47. I see the similarities between my answers (someone without Dementia) and the common behaviors of someone who has Dementia. Very interesting!

  48. very interesting and hopefully make us more aware of how people living with dementia feel

  49. As a dementia specialist, I greatly appreciate this awareness survey…it emphasizes how universal our coping strategies really are; with or without dementia. Thank you so much, Susan!!!

  50. Great questions.

  51. Very enlightening. Made me more aware of the struggles of dementia sufferers.

  52. This is how people with dementia act so we’re not so different although dementia is treated differently

  53. As humans we feel angered and threatened if someone attempts to force anything upon us and will react in any way to show this. Even something that may appear to be a simple task may easily be misinterpreted or not understood by a person living with dementia, we must remember this.

  54. I can see how some of the patients I help look after now feel. Xx

  55. most assumptions about PLWD are born of ignorance & fear

  56. Lots of yesses.

  57. This is such a complicated issue that, like just about everything else on the planet, has to do with money. And the fact that people over 50 are seen as low-value in our society. Ideally, we would have caring homes for people with dementia, with proper trained supervision, and it would be free. Sadly, this is needed for many chronic mental and physical diseases — and for the aged themselves. But older people are not sexy and so politics – and money – stand in the way of us having a civilized society. It is not because we have heating that we are civilized. It is how we treat our families and each other.

  58. Thank you!

  59. Question 28 could have done with an example; otherwise a game changer of a survey! Very well done, in my view. Bill

  60. Thought provoking! A good exercise for carers and Nursing staff.

  61. Very good.

  62. Well worded questions! Mom did from Alzheimer’s so I get much of it.

  63. I have mild cognitive impairment.

  64. My family history suggest that this may happen to me.

  65. I took care of dementia patients for 38 years.

  66. Hope this helps your cause.

  67. I understand the point of this survey.

  68. Excellent point!

  69. Thank you! This survey highlights the human element of Alzheimers!!

  70. The questions gave me a new perspective on what it must be like to live with Alzheimer’s/dementia or any mental health condition for that matter.
  71. There are so many proven evidence-based studies which prove batch living denies the basic rights of the individual. Yet we continue to build Communities’ where people are placed together based on two insignificant factors age & undesired disability. Dementia villages are the new acceptable forms of batch institutionalised form of living.
  72. poor carers do things to people – good carers do things with or for people
  73. I argue but never swear or curse at people.
  74. Excellent questions which made me think, some questions were easier to respond to than others.
  75. Many of these questions require context, particularly in the realm of restraints and confinement. Lack of insight into the reason for restraint or confinement exists in dementia and other illnesses or deficits as well.
  76. Yes I am normal and if I had been labelled as having Dementia I would still want a life and be part of my own relationship in my care. For people to understand and care for me as a normal person, rather than leave me to die alone frightened and scared after being left alone in my dementia fog because they do not understand me and the reasons for my frustrations
  77. Clever survey!!
  78. Hmm, I’m a psw and see where this is going… Well played
  79. Very interesting survey, with very pertinent, thought provoking questions and hopefully insight for others into those who suffer (individuals and their families) with dementia
  80. Great Survey!
  81. Interesting survey…makes me think for sure about how Dementia is treated…thanks for doing this as I am in that age group…
  82. This survey really makes you think about how a person with dementia could be feeling and why they sometimes resist what you are trying to help them with. Getting confrontational with people doesn’t help. As a carer YOU have to change your mindset.
  83. Too many vague questions
  84. Great survey. I will share with my support group.
  85. Wow. Great way to reframe “problematic” behaviour.
  86. Some questions where ambiguous. I think I am dyslexic
  87. Fascinating to consider that we pathologize behaviour in persons with dementia that we accept from ourselves, even if it did compromise our safety or dignity. I know from personal experience it is tough to be a caregiver, but it also strikes me that one of the biggest problems we have with people with dementia is their non-compliance with what we think is best. Interesting mirror held up with this survey.
  88. So why should people with dementia be expected to behave otherwise? Rhetorical question. Good survey.
  89. My mother has it and my dad had it!
  90. Excellent!!!!!!!!!
  91. Normal responses…… we all experience…… Not BPSD!
  92. All of these questions could describe me now and I do not have Alzheimer’s or dementia or my mom who died of Alzheimer’s. I hope that people will learn from this to treat those with Alzheimer’s with respect and dignity.
  93. I think Q12 needs a “don’t know”.
  94. High fives for this survey. Sorry i didnt see it until just now. Sharing. Peter G. Big hugs
  95. I was a caregiver for husband who was confirm with Alzheimer at 48 yrs young. Took care for him for 18 yrs. He passed 2015.Am coping day by day.
  96. Very thought provoking. Good luck with the research
  97. WOW! Susan, I need to share this. Opened my eyes and made so much sense. T.K.
  98. Good questions. I realize that those questions approach behaviors perceived by someone with Alzheimer’s Disease, an how we would behave in front of them… and we woukld do exactly what they act. Congratulations.
  99. I find some of the question very general in nature, such as “do you ever complain”? Well everyone complains about something.
  100. Eye opening…
  101. What an interesting survey! Has me thinking.
  102. This is a very clever survey, as it’s making you think of your behaviour when in fact it’s actually relating it to individuals with dementia and how they feel when things are opposed on them without any form of explaining and being holistic towards them as a person rather than the disease it’s self. I work in dementia and have had many a time pulled someone aside for not recognising what the dementia sufferer is going through, rather than how quick they can get the job done
  103. I work in long term care as a R.N. I see dementia daily, and have infinite patience and caring for all of them. I’m not perfect at home, but try to be the best part of me at work.
  104. Great survey. I will share with y support group.
  105. As someone who works with people afflicted with alz and dementia, in answering these questions, and most of them were yes, I kept thinking of instances when the seniors I serve, exhibited these behaviors! Interesting. I’d love to see what is derived from this survey. Thank you
  106. What is the meaning of the surevey: to create more comprehension for a person with dementia? I think there are far more better ways to reach than a survey. What do you do with the results?
  107. I have answered yes to many questions based on how I was when I had my 2 strokes in Sep this year.
  108. Interesting questions
  109. All staff in healthcare should have to do this survey
  110. This would be a good to give to the care team as a group session .
  111. Good survey!!!
  112. Having cared for my mother with Alzheimers,and having 2 sisters with early onset Alzheimers I believe I see where you are going with this survey.
  113. Both my parents are living with dementia
  114. Not yet….but my mom does, and I worry that it is coming my way.
  115. Perhaps I do! Answered many yes’s!
  116. Took care of my husband at home til he passed…Had AZ diagnosis…Lost some friends due to their not understanding this disease.
  117. Look forward to the results. The questions were very insightful and made me reflect how residents in memory care feel.
  118. Father has Alzheimer’s
  119. Strange questions- so obvious that most people will answer yes- the point seems to be that dementia or Alzheimer’s is just part of normal behaviour.
  120. Best of luck with your projects and endeavors! And a Merry Christmas to you! Take care, Dani
  121. I don’t understand the point of this survey. The questions are all very pointed questions that talk about specific behaviors common to both caregivers as well as dementia patients and seem to want to equate some sense of “normalcy” to them, as if the idea was for the person without dementia to have a sense of sharing the experience of the person with dementia. This is really not possible. Not really. Those of us without dementia still have our ability to reason and think logically, and cannot truly understand what it’s like to not have that ability.
  122. Good way to get through the message that expressions of feelings in persons living with dementia are normal reactions to what they perceive is happening in their reality. We just need to find out what they are trying to tell us.
  123. Good way to get through the message that expressions of feelings in persons living with dementia are normal reactions to what they perceive is happening in their reality. We just need to find out what they are trying to tell us.
  124. I have a mother who has Alzheimer’s Disease and am interested in where this survey is leading.
  125. Scary how many behavioural traits I said yes to…
  126. We need to all understanding that people with dementia are firstly people. Their behaviours only appear bizarre because they can make no sense of the world around them. Patience is what is needed – that and an awareness that people with dementia are not a threat, they just need to be treated as vulnerable people. Some treat dogs with more compassion. I could go on …!
  127. Am I human – like the rest of everybody? YES!
  128. Great questions to shift our perspective on mental illness!
  129. The most important to be tolerant and sympathetic…. whatever age or ..
  130. That really made me think…..thank you.
  131. Very interesting.
  132. Most of these require a now and again or a how often as there are ‘normal’ levels of behaviour
  133. I know exactly where you are going with this as I ask the same question amazing Susan – we ALL exhibit behavioural expression and cognitively aware people more than people living with dementia – it is our attitudes and responses and mismanagement in not meeting the needs of others that trigger most behavioural expression. Good call. I bet you know who this is – lol.xx
  134. Very thought provoking. I kept thinking of my Nana when she was diagnosed with alzheimers. This puts a new perspective on things. Glad her careworkers were so supportive, and mostly our family was patient.
  135. Thanks for doing this.
  136. A very thought provoking and interesting survey.
  137. I see what you are getting at.

 

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Advocacy, Information, NHBPS

what would YOU do? a short survey on behaviour

My Alzheimer's Story

Thanks for helping me with a little research by doing the short survey below which comprises mostly simple “Yes” or “No” questions on behaviour; it takes about three minutes to complete.

Besides doing me a favour, your answers may get you thinking.

Please take the survey by clicking here.

You will be able to see the results immediately after you complete the survey. Thank you for participating.

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Advocacy, Annie & Cricket, Antipsychotic drugs, NHBPS

death by recliner

My Alzheimer's Story

death-by-recliner-cropped

This is one in a series of vignettes based on the Nursing Home Behaviour Problem Scale (NHBPS), which is used to measure agitation in people who live with dementia. The vignettes are told from the point of view and in the voice of a fictional character called Annie, a woman in her mid-eighties who lives with dementia of the Alzheimer’ type in the mid- to later-stages of the disease. Annie resides in a long-term care facility somewhere in Canada. This vignette is called “death by recliner.” There’s a link to all the vignettes at the end of the post.  

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death by recliner

”I’m just going to tilt this back for you Annie, so you’ll be more comfortable,” the girl says, as she raises the footrest and my feet with it. My body settles back into the big chair. My legs and feet are in the air; my head sinks into something soft.

“You can take a little nap, Annie, won’t that be nice?” the girl says. Light streams through the window beside me. It’s a sunny day. A warm day. Wouldn’t it be lovely to be outside?

“I don’t want to take a nap,” I say. I’d love to be out in my garden. I bet the geraniums in my window boxes could use some water. It’s been dry lately.

“Yes you do,” the girl says “you always have a nap after lunch. Here let me pin you.” She tugs and pinches my sweater at the shoulder on one side and then the other, puts a blanket across my middle. “That’s it dear. You’re all set.”

“Na na na na no,” I say. I put my elbows on the armrests, reach forward and pull with my hands, squeezing down and in with my lower legs and heels at the same time. The chair starts to move. My body propels slowly forward. My feet get closer to the ground.

“Annie. Stop that Annie,” the girl says. “It’s time for your nap.” She pulls the footrest up. My feet lift; I lean back. The hollow of the seat cradles my bum. I’m half lying, half sitting. I want to get up. I try to get up. The girl pushes somewhere beside my head; my feet rise, my bum lowers, my head goes back.

“What am I going to do with you Annie?” She says; her voice has an edge. It’s scary when the girls talk like that. I don’t like that tone of voice. It makes me feel like something not good is going to happen.

See the real thing here: hidden restraints, hidden abuse

“Let’s see,” she says. Her head turns slowly, and then stops. I look where she’s looking. There’s a striped chair not far away. The girl walks over to the striped chair. She has dancing clowns on her shirt. Her pants are blue. I like blue. I try to stand before she returns. I’m almost up. I’m almost there. But the girl is back before I can make it. My legs rise high as she pushes the seat of the striped chair under the footrest. I flop back. My breath pops out: huh! as my spine hits the chair with a thump.

“There we go, Annie. That should keep you safe and sound my love. Have a nice nap,” she says.

“I don’t want to have a nap,” I say. My eyes are wet and blurry. My throat feels tight.

“Yes you do.” She pats my foot. “You like to have a nap after lunch.” She walks out the door. The clowns go with her. I sit alone. The sun shines through the window. I need to get up and get out of here. I bend my knees, grab the ends of the armrests with my hands, and pull as hard as I can. I use my feet to push down on the top of the footrest. I feel the strain in my thighs. Nothing. The chair is stuck. What’s wrong? Why doesn’t it move? 

“Help!” I cry. “I can’t get up. Help!” No one comes. I’m trapped. Something pounds in the middle of my body. I feel cold. Oh my God help me, I’m trapped. I pull with my hands until my arms shake. I draw my knees closer to my chest, crunch my upper body forward, push with one arm, try to twist and roll out of the chair. Get out of here. It’s too hard. It’s no good. My stomach muscles aren’t strong enough. I fall back.

“Help!” I shout. “Please help me!” My voice cracks and squeaks. “Something’s wrong. I don’t know what’s wrong. Help!” But no one comes. No one comes.

More

©2016 Susan Macaulay / MyAlzheimersStory.com

https://myalzheimersstory.com/2018/01/23/hidden-restraints-hidden-abuse/

https://myalzheimersstory.com/2016/04/26/waging-war-at-alzheimers-bath-time/

https://myalzheimersstory.com/2016/12/08/5-surefire-ways-to-stop-anger-and-aggression-in-people-who-live-with-alzheimers-disease-in-the-mid-and-later-stages/