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.

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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:

The message from Prof. Dawn Brooker, Head of @DementiaStudies, who is attending the WHO #GlobalDementia conference. pic.twitter.com/wLHwoR1iI7

— University of Worcester (@worcester_uni) March 17, 2015

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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:

“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 here, here, here, 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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Take my short survey on behaviour here.

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