Sonya Barsness defines herself as a “revisionary gerontologist.”
A revisionist, she writes in the “about” part of her blog, is “an advocate of revision; a reviser; any advocate of doctrines, theories, or practices that depart from established authority or doctrine.”
“Revisionist historians re-interpret historical records or events. As a revisionist gerontologist I believe we need to change the paradigm of aging and dementia,” she says.
I couldn’t agree more — we ABSOLUTELY need to change the paradigm of aging and dementia. And I love Barsness’s blog “being heard.” She posts relatively infrequently, which is a good thing for people like me who are snowed under with emails, and when she does post, you can be sure the piece is something well worth reading, like this one entitled “The Faces of BPSD.”
Take a look. Have a listen. I bet being heard will make you think differently too…
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As part of the campaign, fellow human rights and dementia care advocate Kate Swaffer penned “Rethinking Dementia: Normal Human Responses,” an excellent post wherein she lists fourteen simple examples of why we should #BanBPSD. Here are five from Kate’s list of 14 [I’ve added bits here and there, which I have enclosed in square brackets]:
Labeling and medicalising normal human responses to being segregated [and isolated] is wrong; it is also a breach of our most basic human right under the Convention on the Rights of Persons with Disabilities (CRPD).
Labeling and medicalising normal human responses to being forced to live in an institution is wrong; we know institutional care ensures poor care, and [given the] choice, almost no one wants to live in [an institution].
19 ) Labeling, medicalising and punishing an individual’s normal human responses to cruel, abusive, harmful and wrongful treatment by physically restraining them is abuse.
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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,
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 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.
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
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I am frustrated by the fact that what is self-evident to me (and to thousands of other family care partners) appears to be a mystery to care providers, and apparently also to a whole whack of policy and decision makers who seem to require untold quantities of expensive research to confirm that which is as plain as day to dementia care advocates worldwide. Maybe someone should research why we need research to prove what is common sense and what dementia care advocates already know.
The team looked at research that spanned four decades and produced a 10-page report that came to a seven-line conclusion, which reads in part:
“Our findings suggest that efforts to improve QoL might focus on supporting relationships, social engagement and everyday functioning, addressing poor physical and mental health, and ensuring high-quality care.”
This is news?
According to the abstract, the conclusions were based on the analysis of “198 QoL studies taken from 272 articles in the meta-analysis.” It boggles my mind when I think about the amounts of money and effort that went into all those studies to come to the conclusion that people with dementia need the same things to enjoy a reasonable quality of life as people who don’t live with dementia. Hello! People who live with dementia are people, not aliens.
The second half of the Exeter study’s conclusion calls for more research; it says:
“However, there is a need for longitudinal evidence that can point to ways of maintaining or improving QoL over time and enable identification of people at risk of declining QoL, so that preventive interventions can be targeted to this group.”
With all due respect to the researchers, I don’t think we need more research. We need better dementia care.
I think we need to immediately implement action plans that will transform substandard conditions in long-term care facilities and in our own communities to bring them up to acceptable levels. We need to put frameworks and programs in place that will ensure that the majority of people living with dementia attain a reasonable quality of life, whether they live in their own homes or in institutions. We are still a long way from that goal. We need to attain it before we have to maintain it!
The challenges and circumstances under which hundreds of thousands of people who live with dementia struggle every day preclude them from living well and enjoying a reasonable quality of life. These deplorable conditions include being misunderstood, stigmatized, vilified, neglected and abused, as well as being physically confined and chemically restrained, among other indignities.
It makes me mad as hell, and even more determined to be a creator of change.
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I remain astonished that the vast majority of geriatricians, gerontologists, neurologists, and other medical geriatrics professionals persist in using the artificial construct of behavioural and psychological symptoms of dementia (BPSD) to describe the behaviours of people who live with dementia (PLWD) that care partners and care workers experience as challenging when it is ridiculously easy to prove (even I can do it), that such behaviour is normal under the circumstances in which PLWD find themselves.
In 2016, I created “a short survey on behaviour” and invited people to respond. The survey remains open online, and the results are consistent over time; as of May 7, 2018, 1,555 people had responded. Based on that piece of lay research alone, the only possible conclusion is that BPSD are not symptoms of dementia.
In April 2018, I created another survey (Is it normal?) related specifically to “wandering” and “exit-seeking behaviour.” As of May 7, 2018, 510 people had responded; I expect the results will be consistent over time, just as they are with “A short survey on behaviour.” It’s important to note that 90 per cent of the “Is it normal?” survey respondents indicated that, as far as they know, they do not have any form of dementia. Therefore, behaviour that 90 per cent of the respondents imagine they might exhibit under particular sets of circumstances (i.e. being trapped in their own home), could not be attributed to dementia.
A preliminary analysis of the responses to Question 6 (How would you feel/react if you were unable to leave your home when you wanted to because for some strange/unknown reason you couldn’t find the doors or, if you could find them, you couldn’t open them when you did?) may be found here.
Question 7, also an open-ended question, expands on Question 6; it asks respondents to imagine what they might do in a situation faced every day by many people who live with dementia and who exhibit what is labelled as “elopement,” trying to “escape/flee,” and/or “exit seeking” behaviour. Question 7 asks: “If you couldn’t find or open the doors to leave your home when you wanted to, what might you do? What action (if any) might you take?”
Of the 510 people who had taken the survey as of May 7, 2018, a total of 466 responded to Question 7. Here are some examples of their answers:
Call the watchman, call my neighbor, call my office, call my best friend. Open the windows, get on the balcony shout to someone to get help. If all fails, I could string some bed sheets on the balcony rail and slide down.
Try to smash my way out with something
Call out for help, ask people what to do, how to get out. Try to open the doors, look around for another way out. Enlist others to help. Plan a prison break. Call on the phone for help. I’d become very agitated, impatient, distrustful, restless, anxious and maybe fearful.
Jump out of the window
Look for another way out, i.e. A window, call a friend, call 911, scream out for HELP so that someone outside can hear me and help me find a way out.
To facilitate analysis, I grouped the 446 responses into six categories:
Try to get help (e.g. call, ring, phone, shout, scream, yell, holler, ask, beg for help)
Try to get out (e.g. climb, search, find a way out, break, smash, saw, hammer, kick, cut)
Get emotional (e.g. panic, become upset, become angry, freak out, frantic, go bonkers)
Don’t know (i.e. don’t know, not sure, can’t imagine)
Withdraw (i.e curl up, sleep, go to bed, wait, shut down, withdraw)
Do stuff (there are only two responses in this category: 1) Need to find activities to occupy myself; and 2) Do the jobs I’ve been putting off)
Here’s a graph showing the categories, as well as the percentage and number of responses in each category:
Virtually all of the ways respondents said they would react (i.e. categories 1, 2, 3, and 5) would be labelled BPSD (using the medical model). However, of the 466 respondents who answered Question 7, only 11 (2.3 per cent) said they had some form of dementia. That means a little less than 98 per cent of those who responded to question 7 either do not have dementia, or don’t know if they have it or not.
Also, of the 160 people who said they would try to escape in one way or another, slightly more than half (i.e. 87) said they would break, smash, or kick their way out.
Note: 444 of the 446 people who responded to this question identified as female.
The bottom line? Only the people who answered either “Don’t know” (n=18) or that they would “do stuff” (n=2), imagined that they would not exhibit some form of what would be labelled BPSD. That means that about 96 per cent of the respondents felt they would exhibit some form of so-called BPSD even though they don’t have dementia!
As this survey shows, when a human being is locked in and feels trapped:
Many of the behaviours that are labelled BPSD, are normal human responses to feeling or being trapped and/or threatened. What we name behaviours hugely impacts how we see and interpret them. It’s time to examine the wording of BPSD as it stands. Many of these behaviours 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.
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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The more research I do, the more proof I have that the behaviours of some people who live with dementia that challenge those around them are not the result of dementia, but rather perfectly reasonable reactions to particular sets of circumstances.
I started my second anonymous ongoing online survey on April 11, 2018. The vast majority of the respondent (93%) answered an open-ended question which asked how they would feel when faced with a situation that every person who lives with dementia in a “memory care unit” and others in their own homes potentially face every day.
The question asks how respondents would feel if they could not leave their living space when they wanted to because they could either not find a door, or the door(s) would not open. Of those who responded to the question, two (2) say they would remain calm; four (4) say they couldn’t imagine what they might feel.
The other 98% say they would become distressed in some way. They describe how they would feel using words such as:
scared/frightened/afraid/terrified (25%)
anxious/upset/agitated (24%)
trapped/claustrophobic/imprisoned (22%)
frustrated (20%)
panicked/panicky/panic (18%)
As well as others such as angry, confused, disoriented, helpless, cross, annoyed, and crazy. Many use multiple word answers; for example:
Of the people who have participated in the survey to date, 89% say they do not have dementia. Therefore, their reaction to being “locked in” cannot be a result of dementia.
We’ve got it all wrong when we lock up people who live with dementia in their own homes or in memory care units, and then blame dementia for their anxiety and upset. As people who live with dementia are human, they react the same way the rest of us would if we were unable to leave our living space — they feel frightened, anxious, frustrated, trapped, panicky, angry, and confused. I experienced it first hand with my mom when I didn’t know any better.
It boggles my mind that an astonishing number of medical professionals in the area of dementia care seem not to “get it.” It’s not rocket science folks. We just need to walk a mile in their shoes.
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Care partners and care staff may become frustrated when someone who lives with dementia declines to take medications that care partners and care staff believe are beneficial for the person living with dementia.
Do I know why I’m giving this person this medication in this dose at this time?
Is the medication necessary? If it was necessary before, is it still? Has that been tested for in some way recently (e.g. by slowly lowering the dose)? If it hasn’t, should it be?
Could the dosage be reduced? Could the medication be eliminated completely?
What are the risks associated with this medication? What are the benefits? Do the benefits outweigh the risks? Or do the risks outweigh the benefits?
What are the consequences if a dose is missed? What are the consequences if a dose is delayed? Do the benefits of skipping or delaying a dose outweigh the risks?
Have I researched non-pharmacological ways to address whatever issue the medication is meant to address? Have I tried them? If so, what happened? If they “failed,” did I ask myself why? Have I tried non-pharmacological means a second time? Have I tried them repeatedly?
What would I do if someone tried to give me drugs I didn’t want or need and/or that made me feel funny, sleepy or ill? How would I feel if a stranger tried to give me pills and I didn’t know what they were?
What are the side effects of the medication? Have I read and do I understand the information sheet for this particular drug? Do I know how this drug interacts with others? What are the contraindications?
What obvious effect or effects does the medication have on the person I’m giving it too? If I don’t know what the effects are for this person in particular, when can I make time to observe the effects carefully? What effect or effects might the medication have that may not be immediately visible or obvious to me?
Could the medication be interacting in a negative way with other medications the person is taking or foods she or he is eating such as grapefruit for example?
In the past, have I regularly asked the person how she or he feels after she or he has taken the medication? Have I asked after the drug is meant to have taken effect?
Does the medication taste bad, look bad or smell bad? Is the medication hard to swallow? Does it feel funny (e.g. stinging, hot, or cold) going down?
How do I react when people order me to do things I don’t want to do or that I know will have negative consequences for me? How do I react when people think they know better than I do what’s best for me? How do I feel when people try to control me, tell me what to do or treat me like a child?
How do strong medications affect me when I take them? How does it feel when I have adverse effects from taking medicine?
Is taking medicine something I generally look forward to? Or is it something I would prefer not to do, but I do it because I have to under “doctors orders”?
Would I want to take drugs that put me to sleep or made me feel anxious or nauseous or produced other unpleasand effects?
How do I feel about taking medication in general? Do I think it’s a good thing or a bad thing? How does the person I’m giving the medication to feel about taking medicine in general?
When and why have I taken medicine? How does being ill cause me to feel? Do I usually feel comfortable or uncomfortable? Do I tend to be happy and cheerful, or otherwise?
Have I ever stopped talking a medication that’s been prescribed for me because I didn’t think it was working, or I didn’t like the way it made me feel, or I just felt I should stop for no particular reason?
How did you answer question 14? If you are like 94% of the 1,300+ people who have answered my short survey on behaviour, you would refuse to take drugs you didn’t want to take (as shown in the graph below). Think about that the next time a person who is living with dementia chooses not to take the drugs you want to give them.
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These happy antipsychotic meds are saying “Bye bye people who live with dementia, you’re much better off without us!”
We often use pejorative words to describe that which we don’t like in others. We label behaviours that challenge us, don’t fit with our agenda, interfere with our routines or are inconvenient to us in some way or another as “bad,” particularly if those behaving in the way we don’t approve live with dementia in institutional environments.
Here are some potential replacements for “refused [antipsychotic] medication,” which I hope medical professionals and long-term care facility staff will take time to think about:
Respectfully declined
Wished to remain himself
Exercised her right to choose
Preferred to keep her wits about her
Wanted to be awake instead of sleeping
Wished to avoid unpleasant side effects
Preferred to be alert rather than catatonic
Wanted to engage life and live longer & better
Refused to put herself at increased risk of falls
Wanted to have control instead of to be controlled
In case you think I’m being over the top and/or silly about this, please take a moment to reflect on what you would do if someone tried to make you take drugs you didn’t want to take. If you are like 94% of the 1,300+ people who have answered my short survey on behaviour, you would decline to take them. #justsaying
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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, which are fictionalized versions of real events, 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’s 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 “lost in translation.” The rest of the vignettes are here.
lost in translation
“I’m thirsty,” I say to the young man. “I’d like a cup of tea please.”
“What’s that Annie?” He replies. He puts a plate in front of me. It has three different colours of mashed potatoes on it: one white, one dark brown, and one green.
“I said ‘I’m thirsty, and I’d like a cup of tea please,’” I repeat.
“I can’t make head nor tail of your gobbledygook Annie,” the young man says. Now he’s putting a plate in front of the old lady beside me. Her plate also has white, brown and green mashed potatoes on it. “What does: ‘no water dry, the teabag late came,’ mean Annie?” he says.
What’s he talking about? It doesn’t make sense. His words are all jumbled up and out of order. The people in this place are very strange, it’s like they’re from another planet.
“I want some tea please,” I say again.
“Sorry Annie, I just can’t understand what you want,” the young man says.
Better to keep quiet. I try to sit still, but I feel restless. And I know what happens when I move around or complain – I get it trouble. I don’t want to get in trouble. I feel sad. I feel mad. I wish I could get out of here. I want to go home to my mom. She’ll take care of me. I hope someone will bring me a cup of tea.
“Hi Mom.” It’s the silver-haired girl. I don’t know where she came from, but I’m glad to see her.
“Hi dear,” I say. I like the silver-haired girl.
“I see you’re having lunch Mom. It smells like it might be chicken” she says. “And those might be peas. With mashed potatoes.”
“Chicken,” I say. “Maybe it’s chicken.” It doesn’t look like chicken.
“Are you thirsty, Mom?” The silver-haired girl says.
“Yes,” I say. I don’t tell her I’ve just told the young man, but he didn’t understand me.
“I bet you’d like something to drink eh Mom?”
“Something to drink,” I say.
“How about some tea Mom?” The silver-haired girl smiles. She has pink lipstick on.
“Te te te te te tea party?” I say. I don’t know why I stutter, but sometimes I do.
“Yeah,” the silver-haired girl smiles. Her eyes look at me. They’re blue, and crinkly at the corners. “Tea for two and two for tea.” She’s singing now.
Tea party. “That would be nice,” I say. “Tea party would be nice.”
“Okay Mom, I’ll get you some tea.” The silver-haired girl stands up.
I wish everyone were like her. She’s just like my Mummy.
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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:
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)
pain
constipation
incontinence
forced incontinence (needing help with toileting, but no help available)
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.
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My Alzheimer's Story 