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
Additional resources and links:
- comments from the survey (including my top picks for “most interesting”)
- Nursing Home Behaviour Problem Scale (PDF)
- let’s get dead right about dementia and dangerous drugs
- 10 barriers to reducing the use of antipsychotics in dementia care
- alzheimer annie invites you in
- what happens when LTCFs stop giving antipsychotics to elderly people who live with dementia?
Image copyright: bowie15 / 123RF Stock Photo
My Alzheimer's Story 