Advocacy, Real life, Toward better care

dire state of ltc in ontario and across canada is not news

Dementia care and elder care advocates in Canada and around the world will tell you their input with respect to improving care for seniors is largely ignored. This is one of the main reasons neglect and abuse continue in many long-term care facilities. It’s also one of the reasons thousands of older adults died during the pandemic of 2020/21. This real life example illustrates how our voices are not heard.

~~~~~~~~~~~~~~

During the week of April 26, 2021, two separate reports, both of them “scathing,” described the long-time sorry state of affairs in long-term care (LTC) in Ontario.

The content of the reports was widely covered by the media, which is kind of surprising. Because it’s not news. The media is meant to report news. And the appalling state of long-term care in Canada is not news. It’s just the way it is, and the way it has been for decades.

The fact that LTC in Canada sucks is not news. At least not to Canadian elder care and dementia care advocates such as myself, or to many family members and care partners of LTC residents in Ontario, or across our country. Nor is it news to advocates, family members and care partners in Australia, the United Kingdom, or the United States.

We’ve all known about the shortcomings, the abuse, the neglect, and the atrocities “revealed” in these reports for a long time. In fact, we’ve been screaming about them at the top of our lungs for years, in some cases for decades. We are not shocked by the findings. Not at all. It’s just more of the same ole same ole.

When I came back to Canada from overseas in 2011 to care for my mother who lived with dementia, I knew less than nothing about providing such care. It was a steep learning curve. When she was relocated to a LTC facility in Quebec in the fall of 2012, I thought she was going to a place where people would care for her. That professionals who knew what they were doing would oversee her care. That she would be respected, not neglected.

I was wrong. Within a week, I threw all those misconceptions out the window and began advocating like crazy for my mom. I was unsuccessful.

In 2013, I initiated legal action to try to get control of her care from the sibling to whom she had entrusted it. In 2014, the facility’s Director of Nursing and its on-contract physician both lied in the court proceeding. The judge ruled against me. I visited my mother every day for the next two and half years. I witnessed her continued neglect and abuse. I started a blog. My visits were restricted as punishment. I documented everything.

Anyone with any common sense who spends time with a family member in most LTC facilities in Canada will quickly realize the system is broken. You would have to be deaf and blind not to. The proof is legion.

In October 2016, two months after my mother died, and almost four years before the onset of the COVID-19 pandemic, I wrote a post describing the reasons why neglect and abuse of elders with dementia may be the norm rather than the exception in long-term care facilities.

In January 2017, I spoke before a senate committee about the abuse my mother had experienced. The committee members listened, but it seems not to have made a difference. In November 2017, Quebec’s Minister of Health announced an initiative to reduce the use of antipsychotics in LTC. Too late for my mom; she had already been dead a year.

In September 2019, I submitted a twenty-page complaint to the Order of Nurses of Quebec regarding the conduct of the Director of Nursing of the facility in which my mother resided. It included an in-depth analysis of what had transpired as well as audio, video and photographic evidence that clearly showed the abuse and neglect. A year later I received a one-page whitewash in reply. I made a follow-up complaint to the Order’s Review Committee in December 2020. I haven’t received an answer to the follow-up. I have also complained to the College of Physicians and Surgeons about the physician’s conduct. No response.

In 2020, I tweaked my 2016 post slightly and re-blogged it under the title “it’s taken a pandemic and tens of thousands of deaths for people to get what long-term care advocates have known for decades: the system sucks.”

 Both of these posts outlined the same basic issues it has taken an auditor general and reams of experts months to conclude. They are:

1 ) Ageism & stigma
2 ) Lack of awareness
3 ) Poor leadership
4 ) Lack of training/understanding
5 ) Low staff-to-resident ratios
6 ) Warehouse-like environments
7 ) Dis-incentivized workers
8 ) Uncaring cultures
9 ) Ineffective “policing”
10 ) The bottom line

I mean really. C’mon.

We’re not talking rocket science here. We don’t need reports. We need ACTION.

it’s taken a pandemic and tens of thousands of deaths for people to get what long-term care advocates have known for decades: the system sucks

hidden restraints: hidden abuse

20 questions to ask yourself about “wandering”

Advocacy, Real life, Toward better care

quebec order of nurses accepts ridiculous excuses for physically restraining mom living with dementia

Dementia care and elder care advocates in Canada and around the world will tell you their input with respect to improving care for seniors is largely ignored. This is one of the main reasons neglect and abuse continue in many long-term care facilities. It’s also one of the reasons thousands of older adults have died during the pandemic of 2020/21. This real life example illustrates how our voices are not heard.

~~~~~~~~~~~~~~

Article 118.1 of the (Quebec) Law on Health Services and Social Services is clear with respect to physical and chemical restraints; it reads:

“Force, isolation, mechanical means or chemicals may not be used to place a person under control in an installation maintained by an institution except to prevent the person from inflicting harm upon himself or others. The use of such means must be minimal and resorted to only exceptionally, and must be appropriate having regard to the person’s physical and mental state.”

Nevertheless, my mother, who lived with dementia, was chemically and physically restrained in a long-term care facility for almost four years from November 2012 until she died in August 2016.

In September 2019, I lodged a complaint with the Quebec Order of Nurses regarding the facility’s Director of Nursing [XXX] who was responsible for my mother’s “care.” My eighteen-page complaint is comprehensive, evidence-based, and well-documented with photographs, videos and audio recordings. It includes sixty-three hyperlinks to evidence on this blog and other third-party sites. It is based on government policies and law, as well as the Quebec Order of Nurses’ Code of Ethics.

On the subject of physical restraints, my complaint says:

[XXX] allowed staff to physically restrain my mother using reclining chairs, wheelchairs, tables, alarms, and other means, all of which flew in the face of measures undertaken by the Quebec Department of Social Services to reduce the use of such restraints since 2002. See these links:

It took about eight months for my complaint to get to the top of the investigator’s pile at the Quebec Order of Nurses, and another six months for the investigation to be completed. On November 20, 2020, I received a letter from the complaint investigator. On the subject of my mother being physically restrained every day for almost four years he wrote:

“We questioned the reason a chair was placed under the footrest of your mother’s recliner. [XXX] explained that this measure was necessary to elevate your mother’s lower limbs and that the chair was broken. She also claimed that this was done with your brother’s consent as he was responsible for giving consent on your mother’s behalf. Finally, she said that the call bell was always available to your mother so that she could call the personnel if she wanted to get

We took care to explain to [XXX] that it was indeed a form of restraint that should not be used even to compensate for a broken equipment. She clearly understood that it was not appropriate to do so and asserted that this would not occur again.”

As I read what he had written, I became more and more incensed. I was flabbergasted that he accepted such patently ridiculous excuses in the face of the mountains of evidence I had provided including dozens of images and several videos of my mother being restrained.

On December 17, 2020, I followed up with the Quebec Order of Nurses’ Review Committee about the shortcomings of the investigation. With respect to the ridiculous excuses and lies [XXX] supplied on the subject of physical restraints, I said:

“I will address these ludicrous assertions one by one.

“…this measure was necessary to elevate your mother’s lower limbs…”

Not true. No doubt [XXX] used the excuse of the thrombosis my mother experienced in late 2012/early 2013 as the reason for elevating her lower limbs. Did she mention the reason why my mother got the thrombosis in the first place? It was because they weren’t providing her enough opportunities to exercise. Regardless, the first pictures of the chair under the recliner were taken on September 10, 2014, eighteen months after the thrombosis occurred, and when swelling in my mom’s legs was not problematic. Strangely, when it was problematic, [XXX] and her staff did little to alleviate the swelling in my mom’s lower limbs. They didn’t even provide her with proper socks to help her heal.

“…and that the chair was broken.”

This is an outright lie. The chair was not broken. I was in my mother’s room virtually every day. The recliner worked perfectly well. I know because I rescued my mother from it every time I found her there. How could [XXX] possibly know if the recliner was broken or not? She didn’t go around the place testing the integrity of the furniture. As I said above, the first pictures of a chair under the footrest were taken on September 10, 2014. The second pictures (of a different chair under the footrest of the same recliner) were taken in February 2016. That means if the chair was indeed broken (which it was not), then it would have been broken for at least 17 months. If the chair was broken (which I repeat once more it was not), wouldn’t it have made sense to have it fixed or replaced?

“She also claimed that this was done with your brother’s consent…”

Come on! Is it reasonable to believe the [personal support workers] went to the nurses and asked them to phone my brother to see if it was okay for them to put a chair under the footrest of my mother’s recliner when they wanted to? At least [the investigator] had the grace to use the word “claimed,” because this is clearly also a lie. Furthermore, even it were true, is it okay to abuse someone by physically restraining them because someone gave you permission to do so? Would it be acceptable, for example, for a teacher to tie a student to a chair if the student’s parents had given her permission to do so? Of course not! Because it’s not okay to tie children to chairs, period.

“Finally, she said that the call bell was always available to your mother so that she could call the personnel if she wanted to get up.”

My jaw literally dropped when I read this. I had to read it over several times to believe what I was reading. My mother had dementia. She didn’t know what a “call bell” was, let alone that pulling one would summon help. This is just so far out of the realm of possibility that it is incomprehensible to me that anyone who has ever dealt with people living with dementia at the stage my mother was would say something as inane as “she could have used the call bell.” This is utter nonsense. Plus, look at the pictures I provided. Do you see a call bell? No. You may be able to see a cord that is attached to my mother’s shirt with a safety pin that is attached to an alarm in the wall so an alarm rings in the unlikely event that my mother would be able to make her way to her feet (which she would not because she was trapped in the recliner). And even if she did know what a call bell was and what its purpose was and even if she were able to assess when she needed help, my mother would have had to reach behind her, over her head, behind her shoulder and way to the back in a very awkward way to pull said call bell. Or, she would have had to understand that she needed to reel in the extra “ribbon” to ring the bell. She wasn’t capable of doing any of those things at that stage of the disease, which you can hear for yourself if you listen to the audio at the link I provided in my complaint.

The fact that [XXX] said my mother could have used the call bell is incredible. Either [XXX] has very little understanding of dementia or she was desperate to use any excuse, no matter how implausible, to exonerate herself and avoid taking responsibility for the abuse my mother was subjected to. The fact that [the investigator] actually accepted what [XXX] said as the truth is equally unbelievable. It is unconscionable that people like my mother are being neglected and abused by nurses like [XXX] while your organization turns a blind eye to the ill treatment.

Furthermore, my complaint was about the ways in my mother was physically restrained every day for almost four years. The chairs being placed under the footrest comprised one example among many. Despite the evidence I provided, [the investigator] seems to have completely missed the fact that my complaint was that [XXX] “allowed staff to physically restrain my mother using reclining chairs, wheelchairs, tables, alarms, and other means.” She was trapped/restrained in other recliners (without chairs under the footrests) every day as I showed in the pictures I provided.

Such physical restraints are prohibited by Article 118.1 of the Law on Health Services and Social Services in Québec which says that such measures are not common practice, but only used exceptionally, after having assessed all other restrictive solutions. The resident’s situation must be carefully studied with due consideration for his physical and psychological state to determine the most appropriate intervention.

As of March 1, 2021, I have not received an answer to my letter to the Quebec Order of Nurses’ Review Committee. Based on my experience of elder care in Quebec and Canada, I’m not hopeful.

Still, one must #FightTheGoodFight

hidden restraints: hidden abuse

20 questions to ask yourself about “wandering”

Advocacy, Antipsychotic drugs

heard about the latest cure for alzheimer disease? watch this!

Some people say they can slow down the progression of Alzheimer’s disease, even stop it completely or reverse it. That may or may not be true.

The next time you hear or read about the next (or previous for that matter) cure for Alzheimer disease, consider this:

Things that sound to good to be true usually are too good to be true.

And, while I love this video, I would even take it with a grain of salt, particularly the bit at the end that says “talk to a scientist or a doctor” because the problem is, a whole whack of scientists, doctors and researchers are as cracked as the charlatans!

I’m all for:

  • doing my own research
  • listening to my own common sense
  • using my own capacity for critical thinking
  • exercising my intuition
  • seeking out the wisdom, advice and knowledge of people I know to also be sensible, reasonable, rational critical thinkers with lots of hands on experience in whatever the subject matter is

On the latest “cure” for Alzheimer disease, I’m going with the healthy approach of exercising my brain and my body, eating right, living well, having fun and being present in the moment. On the other hand, I’m not afraid of living with dementia should that be my destiny.

I’ve made the most of whatever life has dished up so far, and I intend to continue.

https://myalzheimersstory.com/2015/01/30/i-may-have-alzheimers-disease/

https://myalzheimersstory.com/2016/03/25/the-black-dots/

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Advocacy, Challenges & Solutions, NHBPS, Toward better care

hundreds of studies make me mad as hell

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.

A team of 14 researchers at the University of Exeter in the UK likely spent a year or two working on this paper: Living well with dementia: a systematic review and correlational meta-analysis of factors associated with quality of life, well-being and life satisfaction in people with dementia, which was published in January 2018 in Psychological Medicine; see a layperson’s version in ScienceDaily here.

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.

Wikihow gives a great list of five personal quality of life indicators for regular folk that include those in the Exeter study conclusion plus several others; here they are:

  • Quality of living conditions
  • Access to healthcare and education
  • Feelings of safety and security
  • Social interactions and relationships
  • Sense of purpose and meaning

Naomi Feil suggested a similar set of needs in her 1993 book The Validation Breakthrough, and of course there’s the person-centered model proposed by Tom Kitwood in the late 1990s, and the well-being model more recently outlined by Dr. Al Power in Dementia Beyond Disease: Enhancing Well-Being, which all say something similar in different ways.

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.

#wecancarebetter

13+ needs we share with people who live with dementia

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Advocacy, Challenges & Solutions, NHBPS, Toward better care

how would we behave if we were locked in? research shows 96% of us would respond the same way many people with dementia do

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.

However, I am determined to gather more evidence to support my case; my goal is to stop the use of the erroneous and harmful label BPSD.

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:

  1. Try to get help (e.g. call, ring, phone, shout, scream, yell, holler, ask, beg for help)
  2. Try to get out (e.g. climb, search, find a way out, break, smash, saw, hammer, kick, cut)
  3. Get emotional (e.g. panic, become upset, become angry, freak out, frantic, go bonkers)
  4. Don’t know (i.e. don’t know, not sure, can’t imagine)
  5. Withdraw (i.e curl up, sleep, go to bed, wait, shut down, withdraw)
  6. 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.

Take the survey here.

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

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Advocacy, Challenges & Solutions, NHBPS, Toward better care

how would “normal” people feel if we did to them what we do to people who live with dementia?

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.

In early 2017, I began an anonymous online “survey” that is both a learning tool, and a way for me to show that behaviours labelled “BPSD” are in fact normal human behaviours. You may take that survey here; you may see the results here, or in this article published in the Journal of the American medical Directors Association (JAMDA).

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:

  • Trapped, a prisoner in my own home.
  • Confused, upset, suspicious, anxious, angry, frustrated, depressed, imprisoned.
  • I would be extremely upset, panicky, angry and disoriented.
  • Angry. Upset. Confused.
  • I would became frustrated, agitated, and probably angry.
  • Terrified! Confused! Helpless! Frustrated! Angry! Embarrassed! Desperate!
  • I would freak out. Total meltdown. Panic.

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.

Take the survey here.

how would we behave if we were locked in? research shows 96% of us would respond the same way many people with dementia do

“wandering” is not a symptom of dementia

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Advocacy, Antipsychotic drugs, NHBPS, Toward better care

20 questions to ask when a person living with dementia declines to take her or his medication

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.

If you are one of those care partners or care staff, asking yourself these 20 questions might help address that frustration, and give you a different perspective on why people with dementia might choose to decline taking medication.

  1. Do I know why I’m giving this person this medication in this dose at this time?
  2. 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?
  3. Could the dosage be reduced? Could the medication be eliminated completely?
  4. 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?
  5. 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?
  6. 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?
  7. 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?
  8. 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?
  9. 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?
  10. 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?
  11. Have I considered the fact that taking the medication may cause the person distress or discomfort?
  12. 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?
  13. 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?
  14. 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?
  15. How do strong medications affect me when I take them? How does it feel when I have adverse effects from taking medicine?
  16. 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”?
  17. Would I want to take drugs that put me to sleep or made me feel anxious or nauseous or produced other unpleasand effects?
  18. 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?
  19. 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?
  20. 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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Advocacy, Antipsychotic drugs, Toward better care

elderly man with dementia dies in quebec ltcf from inappropriately prescribed antipsychotic drugs

Christin Belley’s 89-year-old father Jean-Pierre, who lived with Alzheimer disease and vascular dementia, was still driving in the summer of 2017. He had some health issues (who doesn’t at 89?), but he was relatively well when entered a long-term care facility (LTCF) in the province of Quebec on December 11, 2017. He was walking and talking and still had a great sense of humour.

Jean-Pierre Belley died 19 days after going into “care,” his final days described by his daughter Christin as a living nightmare. Essentially, he was drugged to death with a toxic cocktail of quetiapine, haldol, and risperidone.

On January 7, 2018, Christin Belley posted on open letter detailing the events leading up to her father’s death on her Facebook page. Here is an English translation of that letter (the original version in French is embedded below):

For your safety and that of your elderly relatives, please share this letter to Mr. Philippe Couillard (Premier of the Province of Quebec), and Dr. Gaétan Barrette (Minister of Health, Province of Quebec):

Gentlemen,

My father, age 89, died on December 30, 2017, in a Quebec long-term care facility. He had been admitted on December 11th, 2017 following a diagnosis of Alzheimer disease and vascular dementia. The placement was meant to be temporary until space became available in a residence more suited to his needs, there being a lack of space in such facilities because of our aging population. My father had been having episodes of memory loss, but he was alert and could still hold a conversation. He hadn’t lost his sense of humour, and often made us laugh. On the other hand, he wandered, especially at night.

On December 20, I found him lethargic and confused, his speech was slurred, he was having spasms and contractions, and his body was becoming swollen. I suspected the medications he might be on. I expressed my concern to his young doctor and asked her to reduce his medication. The doctor explained that antipsychotics (and neuroleptics) he was on were required at night because it was difficult to manage people who wandered given the lack of staff (two people for 35 patients at night, in this particular LTCF). The problem was worse if the residents in question showed signs of agitation or aggression, as sometimes happens with people who have dementia.

On Saturday, December 23, I found my father unconscious in a wheelchair near the infirmary office. His head hung down, and he was so swollen that his body was round and hard as wood. He was having spasms, his body was stiff as if he were in a permanent contraction; he was breathing with difficulty and grunting as he tried to breathe. My partner and I tried to connect with him, but it was impossible, he was no longer there. At the time, I didn’t know what drugs he was being given. I got the information, and wrote down the names of the drugs.

I went home in shock, and researched the three antipsychotics; this is what I discovered:

Quetiapine (Seroquel; and other drugs of the same type): Increases risk of death in elderly patients with dementia and behavioral disorders. Quetiapine is not approved for use in dementia patients in Europe.

Haloperidol (Haldol): should never be given to patients who have been sedated or have cardio vascular disorders (my father had a cardio vascular condition and was being sedated with the two other drugs he was being given).

Risperidone (Risperdal): like other antipsychotic drugs, risperidone may cause a potentially fatal syndrome known as neuroleptic malignant syndrome. If symptoms of NMS appear (i.e. muscle stiffness, confusion, loss of consciousness, etc.), immediate medical attention should be sought.

In addition, all these medications have these possible side effects: swelling, slurred speech, decreased blood pressure, kidney problems, cardiac arrhythmia, impaired consciousness, confusion, spasms, and muscle stiffness. It’s recommended that the medication be stopped immediately if any of these symptoms should appear. My father had all of them.

I asked that the medications be stopped immediately because I feared for my father’s life. The nurse told me that would be impossible, only his doctor could intervene to stop the drugs, and she was away until Tuesday (December 26). In addition, she said, the medication was necessary to ensure the safety of the staff. I kept repeating the same request in the days that followed and I was always given the same answer: this is the procedure, and it is necessary for the safety of the staff.

On December 26 or 27, the doctor called me back. She had done some research, and consulted some colleagues, she said. I was right about the medication, she admitted, and she stopped it immediately.

But it was too late.

My father never regained consciousness. His breathing became more and more difficult and noisy. The spasms and involuntary contractions continued. New contractions of his fingers indicated that he had probably had a stroke (according to the doctor). He became comatose. He lost his swallowing reflex, so he could no longer drink. He was slowly dying of dehydration. His situation deteriorated until his death the following Saturday, December.

My father’s last days were like a horror movie (which replays over and over in my head like a nightmare). And I wonder: Who is blame for the horrible death that was inflicted on my father? And that’s when I thought of you, gentlemen. You and your austerity measures. You and your cuts to our health services and LTCFs.

And when I say cuts, I’m not talking about tepid meals instead of hot ones, or of only one bath per week. I’m talking about people’s safety and security. Your cuts led to my father’s death Mr. Couillard and Dr. Barrette, and I hold you personally responsible for my father’s horrifying last days and abominable end.

This is the original FB post containingChristin Belley’s open letter to Quebec Premier Philippe Couillard and Quebec Health Minister Gaetan Barrette:

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Advocacy, Antipsychotic drugs, NHBPS, Toward better care

10 ways to reframe “refused medication”

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.

When they “resist care,” “wander,” or “complain” their “bad” behaviours are recorded and tracked in charts by nurses and care staff like so many black marks, which, if and when there are enough of them, may lead to the offender being “punished” by, for example, being physically restrained and/or chemically restrained, which in turn may lead her or him to incur more infractions such as “trying to escape,” or “refusing medication.”

I believe we have to stop this cycle by reframing how we think about the behaviour of people who live with dementia. I’ve already suggested lots of alternatives for wanderer and wandering.

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:

  1. Respectfully declined
  2. Wished to remain himself
  3. Exercised her right to choose
  4. Preferred to keep her wits about her
  5. Wanted to be awake instead of sleeping
  6. Wished to avoid unpleasant side effects
  7. Preferred to be alert rather than catatonic
  8. Wanted to engage life and live longer & better
  9. Refused to put herself at increased risk of falls
  10. 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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Advocacy, Antipsychotic drugs, NHBPS

how much is lost in translation?

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 dementiaThe 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.

Teepa thin banner

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.

©2017 Susan Macaulay / MyAlzheimersStory.com

alzheimer annie invites you in

please remain seated for the rest of your life

look who’s talking now

 

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