Advocacy, Real life, Toward better care, You said it!

greg steven elofson says: perspective is important

When I posted “the shocking truth behind this tragic video” on LinkedIn, the first comment it generated reframed the whole situation in less than five full lines, and in a way that made infinite sense to me. I think it will make huge sense to you too.

“Perspective is so important. A more accurate story lead-in would be: “These two people have been locked up against their consent for prolonged periods of time, rarely seeing the light of day, likely left with unmet needs for privacy, palatable food, and ordinary companionship. Predictably, they have done what we see prison inmates do with regularity–fight. Except these unfortunate people have committed no crimes.”

You said it Greg!
And I would add: They’re jailed because they live with dementia, a condition we stigmatize and haven’t yet (for the most part) learned to treat humanely.

You said it!” is a place to discover informed comments, inspiring thoughts, short stories, good ideas, provocative opinions, quotable quotes and noteworthy snippets from across my worldwide network. 

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Advocacy, Antipsychotic drugs, Life & Living

the shocking truth behind this tragic video

The shocking truth is we don’t know the truth at all, even though we think we do.

Here’s the Marketplace “teaser” version of the video, in which I’ve embedded a time stamp:

In an investigative programme entitled “Crying out for care” (see the full segment at the end of the open letter here), CBC’s Marketplace characterizes the incident as an assault in which a person with dementia attacked and caused the death of a fellow resident in a long-term care facility (LTCF) in Ontario, Canada. They infer the “assault” was unprovoked and caused by dementia, and that a contributing factor is a reduction in the use of antipsychotics in Ontario nursing homes.

This is seriously irresponsible reporting on behalf of the CBC and Marketplace. It’s misinformed and misleading, and it contributes to the stigma surrounding Alzheimer’s disease and other dementias. Furthermore, it hinders rather than helps the process of solving the issue of violence in institutional care. I’ve written as much to Marketplace by email and through their website, and have received no response to date. So I published my email in an open letter here.

But let’s go back to the video teaser/trailer (V1) above. What really happens?

Although we see it for only a second, it appears the man in the dark shirt (DSM), approaches the man in the light shirt (LSM) from behind on LSM’s left side. LSM seems to be taller and bigger; he turns around counter clockwise. The next 16 seconds is difficult to watch. Although it’s hard to see, it may be that DSM shoves, pushes or hits LSM in the stomach area; LSM shoves back; DSM swings at him, LSM swings back and because he is taller and bigger, his blows are more “effective,” and DSM ends up on the floor.

Meanwhile, the text boxes on the left-hand side of the video say: “Warning: This video contains graphic content.” Prepare to be shocked! “Security footage shows a nursing home resident attacking another resident.” To be fair, it doesn’t specify who is “attacking” whom, but then “84-year-old Meyer Sadoway was assaulted and died four days later” runs alongside the video of LSM punching DSM in the head and DSM falling to the ground. No conclusion other than LSM is the “assailant” and DSM is the victim may be drawn from the combination of words and video.

But there are a number of issues that make what appears to be obvious, not so obvious at all.

First and foremost, we don’t know what happened in the months, weeks, days, and hours, before the incident occurred. Perhaps DSM and LSM have never gotten along and have a history of altercations; in which case, how and why do they find themselves alone together in the hallway?

Or maybe they have been best buddies up until this day, and something set them off. We don’t know.

In a CBC article that preceded the release of V1 (the teaser) and the full marketplace segment, we’re told that DSM’s sisters say that both DSM and LSM may have been aggressive with others. DSM’s sisters also say DSM found the unit he was on too noisy and he often became frustrated. “He lashed out aggressively toward other residents on several occasions in the months before he died,” they said according to the article.

Further, the article states that the sisters learned after the fact that “their brother’s assailant had become increasingly violent and attempted to fight other residents in the days before the attack.” We don’t know how they might have “learned” that, who said it, who witnessed it, when, where, or how.

Equally important, we don’t know what happened in the minutes and seconds before the dust up. Maybe LSM had been walking down the hall minding his own business, and DSM had been harassing him from behind until LSM finally turned around and the fight broke out. Or maybe they had had fisticuffs already and LSM walked away and DSM followed and then they fought again. Or some other scenario.

We also don’t know what, if anything, was said (or shouted or screamed). Perhaps DSM had been spitting insults at LSM as they walked down the hall. Maybe DSM came up behind LSM and said, “turn around you son of a bitch,” and when LSM turned around, DSM hurled obscenities at him and hit him in the stomach. We don’t know, because there’s no sound on the video. And because of the camera angle and the way the men are positioned, it’s hard to tell who was the provocateur. Who was it that pushed, shoved, or “lashed out” first? Was LSM truly the assailant? Or was it the other way around? Was LSM defending himself against DSM, and because LSM was bigger, DSM got the worst of it? One thing is sure, at the start of V1, LSM’s left side, and perhaps his back are turned toward DSM.

It’s clear (to me at least), based on what I see in V1, that this is a fight, not an unprovoked assault. What remains unclear is who started it. If I were a betting person, based on the fact that LSM appears to have been walking away from DSM before the action starts, and he turns around to face DSM, that it’s more likely that DSM is the instigator.

But I could be wrong. I can’t know for sure, because I am missing a whole lot of information with respect to what caused LSM and DSM to end up in a fight. If I had access to the footage starting five or 10 seconds earlier, I would have more information and could make a more educated guess. But perhaps even another 15 or 20 seconds would not be enough to make a call on what caused the altercation. There are simply too many variables. And if I can’t make a call, how can Marketplace?

This is not to make light of a tragic situation, or to lessen the seriousness of what happened. Two men who were supposed to be safe in care got in a fight. One of them died, likely as a result of the fight. Those are the facts. But the truth of what happened and why remains to be seen. One part of the truth is that most resident-on-resident incidents such as this one are not the result of dementia as was irresponsibly implied in this “investigative” piece.

The rest of the truth is out there. But it’s not on CBC’s Marketplace.

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Advocacy, Real life, Toward better care, You said it!

sue clarke says: they locked up my mom

I posted “hidden restraints: hidden abuse” on Facebook with this lead in: “Physical restraints aren’t always as obvious as safety belts and prison bars. I still get upset when I watch these videos; I just feel this is so wrong. On the other hand, I’m grateful I was there to liberate my mom each day, even if it was only for a few hours.”

The post was shared dozens of times and generated many comments, but this one from Sue Clarke, which I have reproduced here exactly as she wrote it, touched my heart; she said:

“My mom. Had got. Alzheimers. And demture. And the car Home. Would lock her in her room. When she. Started. To shout and lash out. We been few times. Me and my auntie. Dad. Used to get up set. We had to find a. Carerer. To unlock the. Door with. A key It’s so sad for the family. And god knows what these poor. Lady. Family feel. I’m so glad. Mom and dad. Have. Passed away. Together. Gone to a better place. Xxx”

Sue Clarke’s comment felt to me like a raw piece of poetry, just like being the care partner to someone living with Alzheimer disease can sometimes be like an experiential life poem that is at once beautiful and tragic.

You said it!” is a place to discover informed comments, inspiring thoughts, short stories, good ideas, provocative opinions, quotable quotes and noteworthy snippets from across my worldwide network. 


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Advocacy, Life & Living, Poetry

tears to my eyes

This is a poem about the sad state of world affairs, and about missing my mom who died a year ago.

tears to my eyes

©2017 punkie

Dedicated to my mom, Patty, September 27, 1928 – August 17, 2016.

tears fall when the sun sets
well up at its rise
the least little thing
makes me wanna cry

floods, fire and famine
the rapes and the wars
drugs, death, and destruction
know nothing of doors

the poor and the tortured
sail boats in rough seas
the old and infirm
fall down on their knees

the sailors soon drown
in their thousands unrescued
the diseased and disabled
suffer the likes of ceausecu

haters in cars kill
women in streets
fly nazi flags
as the president bleats

“the news is all fake,”
he claims in a tweet
to the cheers of alt-rights
while the rest of us weep

“red, white, and blue,”
great patriots say
blacks, muslims, and jews
well, they’re not so okay

our climate is changing
mother earth has a fever
woe is me! a denier
has a hand on the lever

bodies split open
insides wide exposed
push nuclear buttons
make people explode

the wrongs I am seeing
I wanna forget
but how can i? who would?
with so much blood being let?

if there’s a god
in some heaven above
i hope she soon sends us
a whole whack of doves

i long for a taste
of afternoon tea
with gingersnap cookies
and love taps on my knee

a kitten, a mitten,
a bird on the wing
your face, peaceful space,
and how we used to sing

the world has gone crazy
it’s crystal, it’s clear
hold on tight, don’t let go
to that which is dear

treasure the moments
laugh while you can
time runs through fingers
like hourglass sand

one year ago here
a part of me died
now everything, always
brings tears to my eyes


©2017 Susan Macaulay. I invite you to share my poetry widely, but please do not reblog or copy and paste my poems into other social media without my permission. Thank you.

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Challenges & Solutions, Toward better care

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

 “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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