Tag: BPSDs

Challenges & Solutions, NHBPS, Toward better care

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

My Alzheimer's Story

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:

https://kateswaffer.com/2018/09/10/30-normal-human-responses-6/

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Challenges & Solutions, Toward better care

dementia not the cause in majority of harmful resident-on-resident interactions

My Alzheimer's Story

 “Senior with dementia guilty in death of nursing home resident,” the headline reads.

The incidence of these kinds of tragedies seems to be on the rise, and they will continue to occur with increasing frequency if we don’t address the causes and find solutions. Unfortunately, by blaming dementia for behaviour that could be averted if the real causes of the behaviour were identified and resolved, we are “barking up the wrong tree.”

The 2016 story headlined as above goes on to describe the sequence of events that led to the deadly incident. It says that a damning critical-incident report about the episode was not shown to the jury, and that the report found the nursing home failed “through a pattern of inaction and or inappropriate and insufficient action” to protect residents.

As is the case in most such incidents, there’s a lot more going on than dementia. These kind of headlines, and the labeling used by medical professionals as well as researchers, perpetuate and reinforce the stigma and misconceptions associated with people who live with dementia. The result is we’re no closer to addressing the issues that lie behind violent resident-on-resident interactions in long-term care facilities.

Dementia behaviour consultant Eilon Caspi explains on his archival blog documenting hundreds of such cases:

“It is important to emphasize that the vast majority of harmful resident-to-resident interactions that involve people who live with dementia in long-term care homes are the result of negative and distressing factors in the social (i.e. other people) and physical environment. In most situations, unmet human needs, situational frustrations, and perceived and real threats contribute or directly cause these behavioral expressions.

These social and physical environmental factors and unmet needs intersect with the person’s cognitive disability to generate the episodes. Most elders with dementia are not inherently aggressive. Like us, they react, respond, defend, and protect themselves when they experience distress, and when they sense that their dignity, privacy, identity, and personhood are threatened.

Those who believe that most people with dementia are inherently “aggressive,” “violent,” and “abusive” are mistaken. These common misconceptions run the risk of further labeling and stigmatizing this already stigmatized vulnerable and frail population.

It is easy to forget that people living with dementia have a profound brain disease because their cognitive impairments may not be immediately and physically obvious. In most situations, when people with dementia engage in these episodes, they are actually fighting with each other to preserve their dignity. They “Fight for their Dignity.” The definition of dignity is the quality or state of being worthy, honored, and esteemed.

The widely-held misconception that most people with dementia engage in aggressive and dangerous behavior towards other residents reflects a “blame the victim approach.” This approach, in turn, often leads to a slippery slope in which psychotropic medications are used inappropriately and excessively. These medications are largely ineffective for most individuals with dementia, and frequently cause a series of side effects some of which are dangerous and can be deadly (some have a Black Box warning by the U.S. FDA).

Once the person with dementia is sedated, it becomes harder to identify the unmet human needs that caused the behavioral expressions to begin with, and there is little hope of then arriving at a humane, practical, and life-affirming solution for the person. Instead, other serious problems such as physical discomfort, disorientation, heightened anxiety, and falls ensue.”

All of that said, there must surely be cases in which the character of the person plays a significant role and may predispose her or him to aggressive and/or violent behaviour. Someone who has been difficult and aggressive their entire life may remain difficult and aggressive or get even more so when he or she lives with dementia. But again, this is not, in my opinion, a result of dementia; rather is is a function of the individual’s personality. Furthermore, assaults and other crimes are committed in our communities at large; it’s naive to expect that long-term care facilities will be crime free. The key is to do all we can to prevent crime and violence from occurring anywhere and everywhere, including in long-term care facilities.

Thanks to Eilon Caspi for the good work he does in this important area of dementia care. Read more about him below and get access to his 90-minute pay-to-play training seminar “Fighting for Dignity: Prevention of Distressing and Harmful Resident-to-Resident Interactions in Dementia in Long-Term Care Homes.”

Eilon Caspi is a Gerontologist and Dementia Behavior Specialist. He has worked his entire adult life in the aging field. He started his career as a nurse’s aide in 1994 in a nursing home where his grandfather resided. Both of his grandmothers had dementia in the final years of their lives.

During the last 15 years, Caspi has worked with, or on behalf of, people living with dementia and their family care partners, as well with care staff and other professionals who provide support and care to these individuals in the community and in long-term care facilities (such as nursing homes and assisted living residences). He can be reached here.

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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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