Advocacy, Information, Toward better care

no one should have to put up with that racket!

I’m compiling evidence (I’ve got LOTS of it!) to include in letters of complaint to the College of Physicians of Quebec and the Order of Nurses of Quebec regarding the “care” my mother received while in a dementia jail from 2012 to 2016.

One of the environmental aspects that contributed to Mom’s anxiety and agitation was the volume and nature of the noise around her. For the first eighteen months she was there, Mom was forced to sit in an armchair beside a busy elevator and across from the facility’s call bell panel. The panel buzzed constantly and loudly. I found it extremely annoying; so did Mom. But was it just us? I decided to solicit other opinions with a mini survey.

I invited online friends and fans to listen to a 20-second audio clip:

Then I asked them to answer three questions. When I had more than sixty responses, I did an analysis. I wasn’t surprised by the results.

Question 1:

None of the respondents found the sound calming. Only three found it neutral. The large majority (83%) found the sound annoying, and nine respondents (i.e. 13% of all respondents) found it beyond annoying (for a total of 96% saying it was unpleasant in some way); those who answered “other” described it like this:

  • Oh my shattered nerves, horrible……I just wanted it to stop!!!
  • anxiety-provoking as it endures. it is indicating something is wrong, yet I don’t know what is wrong and I also can’t fix the problem
  • Stressful
  • Irritating
  • Distressing
  • so scary… a violent aggression to my ears, to my body, to my heart, to my soul! Panic… a sense of being trapped… attacked with no way out! Thank god for the sound of your soothing voice
  • most uncomfortable – didn’t like it at all
  • Almost painful
  • It hurts. I can’t think straight. It distracts and annoys me. I’m looking for ways to stop it.

Question 2:

Question 3:

The third and last “question” asked respondents to comment. When I did the analysis, Question 3 had generated 33 responses from a total of 68 respondents (i.e. 48% of all respondents left comments). Twenty of those who commented (i.e. 29% of all respondents and 61% of those who commented) expanded on the annoyance factor:
  • I have six five-year-olds in my care. I enjoy getting them rowdy, busy and boisterous. This background sound is detrimental to me and anyone who can hear it. I played it to my band of five-year-olds through a speaker. They clapped their hands over their ears. One told me to “make it shut up!”
  • I work at a specialized Dementia facility and this would freak out my residents
  • I don’t have alzheimer’s but I do have epilepsy and sounds like that really bother me especially high pitched ones.
  • Chaotic feel
  • Noise was painful
  • Those sounds make my brain crazy
  • No-one should have to put with that racket!
  • Get me out of there… fast.
  • I think this sound would be really annoying to a person with Alzheimer’s
  • I’m a carer and, if I didn’t like it, I’m sure my husband who has AD wouldn’t either.
  • I have extremely sensitive hearing and noises like this jangle my nerves.
  • that sound left me very unsettled…
  • hurts my head!
  • The sound is annoying, high pitched and likely induces anxiety in someone with dementia. A softer bell or other ringtone or even music could be a much better alternative.
  • Very annoying sound
  • Seems sound would cause severe stress over time.
  • Incredibly irritating sound, would make me furious if I was subjected to it for a long time.
  • I hated the noise – it set my teeth on edge & I wanted it to stop immediately.
  • curious when we get more info on the project, can’t imagine anyone would find it calming unless it reminds them of home (reminded me of a hotel I stayed in Lima)
  • Brought on anxiety

I received these additional comments on Facebook:

  • OMG, that was a very stressful 20 seconds!
  • I cant listen beyond 5 seconds. I can’t think. It eats into my brain. I want to make it stop. I put it through my speaker, I normally have music blasting was hell. It hurts. I want it to stop.
  • Unnecessary, annoying in a sense heightening manner, with my being on spectrum may affect me differently, but it was just shy of neurological torture in that short span alone.

And one friend quipped that it wouldn’t be long before he’d take a sledge hammer to the sound panel.

If people who DON’T live with dementia find something in the environment annoying and agitating, what might it be like for those who DO live with dementia? It’s really not that hard to figure out what environmental factors might be distressing to someone who lives with demential. All you have to do is ask yourself what you find irritating and/or distressing, and put yourselves in their shoes.

The oh-so-irritating call bell alarm panel sound was eventually changed to something more like a “ping,” but only after Mom had been there for about eighteen months. And that wasn’t the only anxiety producing noise she had to endure. She had always hated loud sounds. It must have been unrelenting torture for her to be imprisoned in such a noise-filled environment. No wonder she was “agitated.”

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Advocacy, Information

how do you feel about this sound?

Thank you for helping me with this little project.

1) Play this 20-second audio clip:


2) click here and tick one of three boxes describing the sound of the buzzer you heard in the background of the clip.

Thank you!

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Advocacy, Information, Life & Living, Toward better care

are we way off target?

Harry Urban Lives with dementia. He started the Facebook dementia support group called Forget Me Not (it’s a closed group, you will need to request to join if you want to become a member).

Harry, who is an administrator on the Forget Me Not page,  posts there frequently, and sometimes shares those posts on his personal page. This particular post really resonated with me:

“Are we missing the point concerning raising dementia awareness? Are we so focused on finding a cure for Alzheimer’s that we are forgetting about the people living other forms of dementia? Today Hazel and I volunteered at the Alzheimer’s Associations Walk to End Alzheimer’s and had a wonderful time, but something was missing.

I listened to the speakers and heard the statistics and how horrible this disease is. What I didn’t walk away with, was the feeling of Hope. It was nice to hear how much money sponsors contributed and who gave the most, but is that how we are going to end Alzheimer’s?

I know I am being over critical and going to catch Hell from many directions, but the path of dementia I am walking on is comprised of people living with various forms and stages of dementia. Money is not going to get them off that path, only Hope can.

Money is needed to find a cure for future generations and I’m for it, but damn it, don’t people realize that my friends don’t want to hear about the miseries or the statistics, they want to hear how they can live with their disease today.

Why is it so hard to speak about Hope and how we are spending money toward finding ways to live a better life? When we talk about finding a cure, why can’t we also want to find a cure for Vascular Dementia, Lewy Body Dementia, Frontotemporal Dementia and all the other forms.

My biggest question is, why do we need to sell the miseries of our disease to raise funds. Maybe if people saw the Hope and progress the grass roots are making into how people think about dementia, they would give more.”

Several people who also live with dementia made these comments on Harry’s post:

“The negative narrative feeds fear and dread and disables people upon diagnosis. When we speak out our diagnosis are questioned because of the negative perceptions of professionals who should know better. Other diseases are portrayed in a more positive light, breeding enablement and hope, why can that not be the narrative around Dementia.” ~ HG

“This is precisely the problem. Perpetuating the tragedy stereotype is what They use to raise money. Dispelling myths and demonstrating we’re still human with equal human rights is what We do to raise hopes. Someone needs to get Our truth to the masses.” ~ Mary Radnofsky

“Very well said! I have often felt that some of the big associations care much more about the money than they do about people living with the disease.” ~ SW

Like Harry and I, others in the worldwide dementia care advocacy network are asking pertinent and powerful questions such as: why do we need to sell misery and our souls to get funding for dementia care?

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Advocacy, Antipsychotic drugs, Information, NHBPS

take off the blindfolds and #BanBPSD: an open letter to the worldwide dementia community

This is an open letter to members of the dementia community worldwide.


Dear dementia educators, researchers, geriatric professionals, Alzheimer’s societies, associations, and organizations, and members of the worldwide dementia care community,

My mother spent most of the last four years of her life in a catatonic state because the people who were meant to care for her were blind.

They were blind because of what they had been taught. Teachers, trainers, supervisors and peers had told them Alzheimer disease causes the people who live with it to “wander,” “become aggressive,” “try to escape,” and “resist care,” among 101 other things. Unfortunately, when people who live with dementia (PLWD) respond in reasonable ways to adverse conditions and circumstances (RRACC), their actions are labelled “behavioural and psychological symptoms of dementia,” or BPSD, despite the fact that what they do is perfectly normal under the circumstances and in most cases has little if anything to do with dementia.

The care workers, nurses and even the facility physician who were supposed to ensure my mom’s well-being didn’t understand that she responded to being in pain, or being hot, cold, tired, sick, confined, restrained, neglected, wet, hungry, bombarded with noise or being told what to do and when by becoming distressed, just as any “normal” person would. The carers, nurses and physician couldn’t see the real causes of my mother’s distress and subsequent actions because they were blindfolded by the notion of BPSD.

Like my mom was, hundreds of thousands of PLWD are stigmatized, misunderstood, drugged, neglected and abused every day because of ignorance. The vast majority of people in dementia research and care, regardless of their area of practice, want the best for PLWD. They want PLWD to lead healthy, engaged and purposeful lives, despite dementia. The majority don’t want PLWD to be drugged, neglected and abused. But, like those who were supposed to care for my mom, their collective ability to see clearly, and do what’s best is either impaired by the broken lens of BPSD, or made impossible by a BPSD blindfold.

It’s time members of the dementia care community worldwide saw the light.

BPSD is an umbrella term devised by the International Psychogeriatric Association (IPA) in the late 1990s. Its roots lie in the work of researcher Dr. Jiska Cohen-Mansfield, who, a decade earlier developed a 29-item scale to measure agitation in nursing home residents. The Cohen-Mansfield Agitation Inventory (CMAI) is a research tool that is not designed to determine the causes of agitation (dementia or otherwise), it merely measures it. In the late 1990s, the IPA renamed these indicators of agitation, and proclaimed that henceforth they should be called BPSD, thereby morphing a cluster of research tools into a clinical tool.

The first two iterations of the IPA’s BPSD Educational Pack were “produced by the IPA under an educational grant provided by Janssen-Cilag,” a subsidiary of Johnson & Johnson Pharmaceuticals, the manufacturer and distributor of risperidone, which is marketed under the brand name Risperdal, and which was subsequently sold as a treatment for BPSD. Risperidone and other antipsychotics such as quetiapine (Seroquel) and haloperidol (Haldol) are still prescribed to PLWD despite being contraindicated for anything other than a diagnosis of psychosis and “black boxed” in the USA and other countries.

Labelling the reasonable responses of PLWD as symptoms of dementia may be good for the bottom line of pharmaceutical companies, but it’s harmful to PLWD and their carers. It causes care partners, care workers, and medical personnel to misinterpret the actions of PLWD, which in turn causes dementia carers to fail to look for, and therefore identify the true causes of distress in PLWD, as well as to inappropriately use antipsychotics and physical restraints that are counterproductive and largely ineffective in addressing the issue.

Even the most skilled and knowledgeable dementia care practitioners, researchers and educators may find it hard to escape the BPSD trap. For example, I recently came across the NHS Dementia Best Practice Guide, which was written under the direction of Professor Alistair Burns, National Clinical Director for Dementia in England, for the UK’s NHS, and Professor Clive Ballard, Pro-Vice-Chancellor and Executive Dean, University of Exeter Medical School. Besides providing information, the guide emphasises “alternatives to drug treatments,” which, as a advocate against the inappropriate use of antipsychotics, I unequivocally and unreservedly support.

The list of researchers, educators, and clinicians on the guide’s advisory board reads like a UK dementia care who’s who, some of whom are highly (and visibly) committed to changing the way PLWD are perceived and treated. Here is advisory board member Dr. Dawn Brooker sharing her views at the World Health Organisation’s Global Dementia Conference in 2015:

All of this begs the question: why is the NHS Dementia Best Practice Guide entitled “Optimising treatment and care for people with behavioural and psychological symptoms of dementia”? Don’t these dementia care leaders and pioneers know that BPSD are not symptoms of dementia? Well, yes. Apparently they do, as the guide content demonstrates. The statements in bold that follow are taken directly from the guide, which says, for example:

A screen shot from the NHS guide

“Pain is one of the most common causes of BPSD.”

If this is true, then a PLWD’s reasonable response to pain is a behavioural and psychological symptom of experiencing pain, not of living with dementia. If, when the pain is addressed, the symptoms disappear, then the symptoms are a result of the pain, not of dementia, which remains after the pain is relieved. This same logic applies to all the “triggers” in the guide.

Recognition of triggers and early signs (e.g. pain, discomfort, malnourishment, dehydration, boredom, physical illness, increased levels of distress, signs of abuse or neglect) that may precede behavioural and psychological symptoms is crucial.”

If a “trigger” is the cause, dementia is not. The possible factors that may cause a PLWD to respond as most human beings would include those mentioned in the guide as well as dozens of others. Any person, whether she has dementia or not, would exhibit some kind of “behaviour” if she were experiencing the “triggers” in the guide. If a PLWD responds to these conditions in ways that those around them find challenging, then their response is a behavioural and/or psychological symptom of being hungry, uncomfortable, malnourished, bored, ill, distressed, abused, neglected, etc., NOT of dementia.

“In most cases developing simple approaches to address these early signs can help prevent symptoms from developing at all.”

Of course they can! If the cause is addressed, the symptoms won’t develop because the symptoms are not symptoms of dementia, they are the result of whatever the real causes are, which, if alleviated, will resolve the issue. A circular argument to be sure, but valid nonetheless.

“Sudden emergence of BPSD often has a physical trigger.”

In other words, the physical triggers listed in the guide (i.e. pressure sores, loud noise, being restrained, not being able to see, not being able to hear, being to hot or too cold or hungry) are likely to cause a PLWD to react somehow, just as the same conditions would cause anyone to react in some way whether they live with dementia or not.

Likewise, a June 2018 article in The Aging Agenda (Non-drug approaches lead to ‘massive decreases’ in BPSD) quotes Associate Professor Stephen Macfarlane, head of clinical services at Dementia Support Australia (DSA), who provided irrefutable proof that BPSD are NOT SYMPTOMS OF DEMENTIA.

In 2015, the government of Australia established Severe Behaviour Response Teams (SBRT) which are operated by DSA. The Aging Agenda article reports that: “An analysis of 173 SBRT cases over three months found severe behaviours were reduced by 50 per cent and their severity reduced by 66 per cent. There was also a 70 per cent decrease in the level of distress in aged care workers and a slight decrease in psychotropic drug use.”

So, by using “behavioural, psychological and environmental interventions,” not drugs, the SBRT were able to reduce the actions of PLWD that care workers find challenging by 50 per cent, and, at the same time, reduce the care workers’ level of distress by 70 per cent. This is HUGE, and proves once again and without a doubt that BPSD are not symptoms of dementia.

Equally important, the SBRT and the DSA determined that 70 per cent of the instances in which PLWD acted in ways that care workers found challenging were the result of the PLWD being in pain.

“Given that such a high proportion of behaviours are contributed to by pain and by the impact of an incorrect or inappropriate carer approach, the solutions to those dilemmas lie in the hands of residential [care workers],” Associate Professor Macfarlane said, according to the article.

This means that in most cases, the things that PLWD do that care partners and care workers find challenging are behavioural and psychological symptoms of pain and/or an incorrect or inappropriate carer approach. These findings echo those of the Canadian Foundation for Healthcare Improvement’s pan-Canadian collaborative conducted in 2014/15, and my own research of 2016/17/18, the results of which are hereherehere, and here.

It defies belief that members of the dementia community worldwide continue to erroneously attribute the reasonable reactions of PLWD to dementia when the evidence that they are not BPSD is widely available, undeniable, and overwhelming.

How many studies confirming what is common sense will it take for people to stop using the harmful artificial construct of BPSD? How long will it take for dementia educators, researchers, geriatric professionals, Alzheimer’s societies, associations, and organizations, and members of the worldwide dementia care community to open their collective eyes, fix their broken lenses, take off their blindfolds and see the light?

What can individuals and organizations that are part of the dementia community do to shift this paradigm?

Here are six ideas for starters:

1 ) People who publish guides and information such as the NHS Dementia Best Practice Guide, could #BanBPSD from their language and publications. Leaders such Professor Alistair Burns, Professor Clive Ballard, and the advisory board that worked with them on the guide could have the title changed to reflect the basic truths in the guide’s content.

2) The Alzheimer’s Society in Canada could update their November 2017 language guidelines, which are excellent, and add BPSD to the list of terms that should not be used.

3 ) Dementia Support Australia could rewrite its page on “behaviour” to reflect what it has proven through the SBRT project — that pain and inappropriate care approaches, not dementia, are the causes of behaviour that challenges carers.

4 ) Researchers could stop researching BPSD, and instead focus their efforts on the real causes of distress in PLWD, or better yet, research ways to address the causes and reduce the distress.

5 ) The International Psychogeriatric Association, which first coined the term BPSD, could do us all a favour and step into the 21st century. It could redefine the way it characterizes dementia and the people who live with it to align the IPA with the evidence instead of clinging to an artificial construct and continuing to support a myth whose primary beneficiary is the pharmaceutical industry.

6 ) Everyone, especially clinicians and other medical professionals in the dementia space worldwide could #BanBPSD from their own language as well as from the larger dementia lexicon from today onwards.

As a member of the worldwide dementia community, you can take action right now:

Reject the harmful artificial construct of BPSD
Share this post with your colleagues, your communities, care workers, care partners and across social media
Use the hashtag #BanBPSD.

Help me and other advocates create a better world for people who live with dementia and their carers.

Thank you,

Susan Macaulay,
Dementia Care Advocate
Blogger, author, former care partner

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

7 problems with BPSD

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Advocacy, Information

is it “normal” or not? a quick survey on behaviour

This is my second short survey on behaviour. (It’s even shorter than the first one!)

Thanks in advance for completing and sharing.

If you have problems seeing/completing the survey on this page, please try here:

alternate survey link.

Thank you!

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Advocacy, Information, Toward better care

alzheimer society nails language guidelines

The Second Edition of the 20-volume Oxford English Dictionary (OED) contains full entries for 171,476 words in current use, as well as “around 9,500 derivative words included as subentries.” 

But language evolves. The third edition of the OED is a work in progress; it’s updated quarterly.  More than 1,100 new words, senses, and subentries were added in its January 2018 update. About the same number were added in September 2017. Examples of new words, senses and subentries abound. As recently as 15 years ago, for example, the word “text” was a noun only; now it’s also a verb.

Similarly, the noun “sext” was previously defined as “A service forming part of the Divine Office of the Western Christian Church, traditionally said (or chanted) at the sixth hour of the day (i.e. noon).” These days, it may also be “A sexually explicit photograph or message sent via mobile phone.” I wonder if that’s progress or regress? “Sexting”—that is the act of sending such a message—is now a verb as well.

Meanwhile, 47,156 other words have become obsolete. I was unable to find examples; perhaps they have been deleted as well as obsolete-ed.

More important than their sheer number is the way words influence how we live. How we describe our own and others’ experiences of life changes as our understanding and perceptions of the world shift. Words play a huge role in that. Consider these examples:

  • Rape “victims” have become rape “survivors.”
  • The terms “African-Americans” and “Black Americans” have replaced racist slurs.
  • “Climate change” more accurately depicts what underlies our unpredictable weather conditions than does “global warming.”
  • Today’s youth may not know that cancer was called “the big C,” and was mostly spoken about in whispers, if at all, before they were born.

It’s hardly surprising that the words we use to describe Alzheimer’s disease and related dementias (ADRD), and the experiences associated with them are also changing, and will no doubt continue to change as our understanding of ADRD broadens and deepens.

I feel strongly that the words we use and the labels we attach to people who live with dementia (PLWD) define how we perceive and treat PLWD. Words shape the way we think. The way we think determines the ways we act. The ways we act impact our lives and the lives of those around us.

The words we use, and the ways we use them are important.

That’s why I was delighted when the Alzheimer Society of Canada released new person-centred language guidelines in November 2017—guidelines which, for the most part, hit the nail on the head. The Society frames the need for change like this:

“Language used to describe dementia has historically been largely negative, focusing on the losses experienced by the person living with dementia. While these losses are real, this negativity has contributed to the development and persistence of stereotypes and approaches to care that focus on weakness rather than strength, illness rather than wellness and victims rather than whole persons. This approach influences how others view dementia, and can add to the stigma and discrimination experienced by people living with dementia and their caregivers.”

I was particularly pleased to see lots of references to the wording and suggested language around the perfectly reasonable reactions and normal behaviour of people who live with dementia to sets of circumstances that would cause anyone to respond in similar ways. Take, for example, this screen shot from the Alzheimer Society’s language guidelines PDF, which may be downloaded here:

I’m over the moon that the Alzheimer Society of Canada rejects the label “wandering,” and suggests alternatives like these.

I’m ecstatic that the Alzheimer Society of Canada says labels such as “acting out,” “aggressive behaviour,” “agitation,” “challenging behaviour,” “difficult/problem behaviours,” “hoarder/hoarding,” “violent,” “screamer,” “sundowning/sundowner,” and the like, suggest that “the behaviour is a result of a problem with the person,” and “do not support a person centred response.”  The publication of these language guidelines by the Alzheimer Society of Canada is a massive step in the right direction. It validates and vindicates what I and others have been saying for years about so-called BPSD and antipsychotic medication.

Thanks Alzheimer Society of Canada, for hitting the dementia language nail on the head.

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Advocacy, Antipsychotic drugs, Information

10 things that seemed like good ideas at the time

Lots of stuff we’re told is good for us actually isn’t.

That’s why I trust my own experience, my own eyes and my own ears, and I take the advice of “experts” and advertisers with a truckload of salt. And I sure as hell don’t trust people who stand to make huge profits from products they push at the expense of my health, welfare and well-being.

Medication has its place and I’m thankful for drugs that alleviate pain, help cure diseases, and prolong life (in a good way), etc. But I don’t believe in inappropriately marketing and inappropriately prescribing drugs that make things worse instead of better. I’ve also learned it’s unwise to believe everything everybody tells me, especially when they have lots to gain from lying.

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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

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



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



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



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?



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



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



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 TysoeDr. Bill Thomas, Dr. David SheardDr. Eilon CaspiDr. Helen KalesJudy BerryProfessor June AndrewsKate SwafferLeah BisianiNaomi FeilProfessor Philippe VoyerDr. 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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