antipsychotic medication – My Alzheimer's Story

Advocacy, Challenges & Solutions, Toward better care

7 reasons why physicians continue to prescribe antipsychotic drugs to people who live with dementia when they shouldn’t

November 8, 2019 My Alzheimer's Story

There is irrefutable evidence that prescribing antipsychotic drugs to people who live with dementia does more harm than good in most cases. These drugs are NOT approved for use in dementia care in most countries.

So why are physicians still prescribing these medications to people who live with dementia?

Because physicians:

are often pressured by care partners, family members and/or care workers and nurses to provide a “magic pill” that will fix situations that care partners, family members and care workers find challenging
don’t know any better and/or are irresponsible
don’t understand that the behaviour family members and care workers find challenging is, in most cases, NOT caused by dementia but rather by factors anyone would find stressful and distressing
aren’t aware that non-pharmacological interventions are more effective than drugs in changing behaviour of people living with dementia that dementia care partners and care workers find challenging
don’t have time to properly counsel dementia care partners, care workers and others in effective non-drug interventions
don’t fully understand the negative impact and harmful side effects that antipsychotic drugs have on people who live with dementia
believe (erroneously!) that they are doing the right thing

#BanBPSD #educatecarepartners #educatephysicians #educatenurses #educatecareworkers

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

20 compelling reasons to rethink the way we label and medicalise the behaviour of people who live with dementia #BanBPSD

40+ seroquel side effects

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Advocacy, Antipsychotic drugs, Toward better care

brilliant lol take on old folk tune strikes powerful paradigm-shifting chord

June 26, 2019June 26, 2019 My Alzheimer's Story

Wow! Bravo to gerontologist, author, and dementia care advocate Dr. Al Power who teamed up with Heather Luth, Dementia Program Coordinator at Schlegel Villages, to produce this superb parody of how the behaviour of people with dementia is mislabelled by those who subscribe to the damaging artificial construct of so-called Behavioural and Psychological Symptoms of Dementia (BPSD).

I’ve provided lots of my own research and evidence proving without a doubt that the artificial construct of BPSD is misleading, counterproductive and just plain wrong. Now, Al and Heather illustrate it simply, humourously, and powerfully with a two-minute tune and a dozen flashcards they put together for Dementia Alliance International’s participation in the 2019 World Rocks Against Dementia event.

Enjoy!

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

7 problems with BPSD

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

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Advocacy, Antipsychotic drugs, Toward better care

like one flew over the cuckoo’s nest

June 7, 2019May 10, 2020 My Alzheimer's Story

I should have known better than to invite my photographer friend Edith to do a day-in-the-life photoshoot of Mom and I on a Friday.

I had intended for Edith to capture in images the wonderful time Mom had when I brought her to my place for lunch or dinner. I wanted to show how well she was able to function, how she helped me make lunch, how close we were, how capable she was, and how much we enjoyed spending time together.

But Friday was bath day. That meant Mom was more likely to be even more drugged than usual. Why? Because she “resisted” being undressed and put in the noisy whirlpool bath with a sling-like lift that must have frightened her. Sometimes she resisted “violently,” just as 98 per cent of “normal” people would under similar circumstances (per my Short Survey on Behaviour).
Adding fuel to the fire was Betsy,* the nurse who gave the baths; she was as mean as a junkyard dog. I don’t recall ever seeing her smile during my four years of daily visits to Mom’s dementia jail. On several occasions, she mocked Mom right in front of me; in one instance making fun of the fact that Mom had to pull herself along with her feet in the wheelchair to which she eventually became confined. Mom wasn’t the only resident I witnessed being subjected to Betsy’s abuse, and one of the care workers confided in me that she would sooner send her mother to hell than place her in a home that Betsy worked in.

Betsy was close to six feet tall, and solid. Real solid. They called her “the sergeant major.” Mom, on the other hand, was five foot two, osteoporosis having shrunk her a couple of inches in the previous decade. She was in her mid-eighties, living with dementia, and sedated with antipsychotic drugs because some of the staff–the ones who failed to engage her in ways that worked for her–found her challenging.

Mom’s bath time aggression was carefully recorded in the nurses’ notes I got copies of when I launched a legal bid to get control of her care in August 2013.

On April 12, 2013, for example, Betsy wrote:

Then a week later:

Hmmmm. So it wasn’t okay for Mom to call out for help when she felt threatened, and under attack, but it was perfectly fine for Betsy to do so?

I know Mom’s reactions could have been prevented with the right approach; I know it with one hundred per cent certainty. But Betsy either didn’t know the right approach, didn’t have time to use it or didn’t want to use it. Caroline or I helped Mom shower every morning for more than a year, and Mom never hit, slapped, kicked or pinched either of us. Ever. Sometimes she was slightly reluctant, saying she didn’t need a shower (for example), but we always managed to convince her, and the process always unfolded without incident. In fact, mostly it was a pleasant experience for her and for us. But Betsy didn’t use the right approach, and everything went pear shaped as a result.

Of course Mom and dementia were blamed for the “bad bath time behaviour,” and when things got really out of control, they gave her an extra dose of whatever to subdue her. That’s why and how she ended up like this on that failed photoshoot Friday in 2014:

This video of my catatonic mom haunts me. I can’t imagine anyone watching it without being shocked, even horrified. It reminds me of the final scenes of One Flew Over the Cuckoo’s Nest in which Jack Nicholson’s “troublemaker” character Randle McMurphy is made vegetative after being lobotomized. I remember crying when, out of love and compassion, McMurphy’s big native friend (Chief) kills him by smothering him with a pillow. I never dreamed I would one day see the same vacant look in my mother’s eyes.

We don’t lobotomize people anymore–for good reason. As one writer puts it:

“It was a barbarous procedure with catastrophic consequences, and yet it was once widely accepted and even earned a Portuguese doctor a Nobel Prize. In the annals of medical history, it stands out as one of medicine’s biggest mistakes and an example of how disastrously things can go wrong when a treatment is put into widespread use before it has been adequately tested.”

Maybe one day we will also stop giving antipsychotic drugs to people living with dementia for the same undeniable reasons, and they won’t be tortured and abused like my mother was for the last four years of her life.

#BanBPSD

*not her real name

7 reasons i post “ugly” pictures of my amazing mom on social media

drugs, not dementia, robbed me of my mom and her of her mind

four years later is too late for my mom. but it’s not for others.

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

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Take my short survey on behaviour here.

Advocacy, Antipsychotic drugs, Toward better care

drugged & drooling

June 2, 2019June 2, 2019 My Alzheimer's Story

Many of the comments people make on my posts, and the stories they send me by email and snail mail break me heart. Some literally bring me to tears. This is one of them – a comment CL made when I posted “an open letter to the dementia community worldwide” on the MAS Facebook page:

“When my father was in the hospital for a stroke, a gentleman used to show up every day. He was an older patient, and he used to tell my dad great stories and jokes from his younger years. My dad thoroughly enjoyed these daily visits.

One day my dad asked me to check on “Robbie” because he hadn’t seen him in a couple of days. So I checked with the nursing staff and they said he was moved to a different ward. So I went to look for him. I found him restrained in a chair, in a zombie daze and drooling. It was heartbreaking!

When I questioned the nurses, they said someone complained about him walking around talking to other patients, so they did this horrifying drugging and restraining!. I cried. Then I told my dad he had died. I couldn’t tell him the truth. It was awful!.

P.S. Robbie never hurt or touched anyone. He just stood at the bottom of the bed and talked. Still haunts me to this day. Five years now.”

The very same thing happened to my gregarious and fun-loving mom: she was physically and chemically restrained for being friendly and sociable. Just the thought of it still makes me cry. Imagine the state of poor “Robbie,” who had brought others joy with his “wandering,” if his friend’s daughter felt it was better to tell her father Robbie was dead rather than tell him the truth of what had happened. Better to say he was dead. Think about that.

I believe it’s a crime to do this to vulnerable people, and in particular to vulnerable elderly. We must stop it. And we must #BanBPSD.

drugs, not dementia, robbed me of my mom and her of her mind

four years later is too late for my mom. but it’s not for others.

safety pins & call bells

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Activities, Advocacy, Inspiration, Toward better care, Videos

how many more steps could you take if you couldn’t take any more?

November 17, 2017November 18, 2017 My Alzheimer's Story

This post is dedicated to the late Dr. Richard Taylor, advocate Kate Swaffer, and care warrior Leah Bisiani.

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

“I think I could take a few steps,” Mom said, “even if there’s not too many.”

It was her birthday. September 27, 2015. She’d been “behind bars” for almost three years, during which she had been inappropriately medicated, and forced to remain seated for “her own safety.” She spent most of the daylight hours chemically restrained (with antipsychotics), and physically restrained (in a recliner or a wheelchair), despite the fact sitting still was completely contrary to her nature. She could hardly stand anymore — her gait had become unmanageably unsteady due to the meds, and from sitting most of the time.

Exercise is essential for well being. Everyone knows that. Everyone. So, even though the distances became ever shorter, I helped her to walk each day. Or at least to try to walk. When I missed a day or two for whatever reason (which was rare), it was always more challenging at the next visit. Her legs would be shakier, she wouldn’t be as strong.

But she never gave up. Neither will I.

This video is part of a series extracted from a care conversation with my writer friend Lorrie B. “I’m keen for others to know the reality of my mother’s and my experience of long-term ‘care, and you’re the perfect one to help me do it,” I told Lorrie on Mom’s birthday in 2017.At this point, Lorrie had been the primary care partner to her own parents for three years, and they were still in their own home. She also had (and still has) her own blog called Unforgettable (I wish I were half the writer she is), which I highly recommend following (I do!). The other posts in the series are here.

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Advocacy, Antipsychotic drugs, Our stories

“rabid-dog” granddaughter takes on “combative” physician

October 23, 2017November 15, 2019 My Alzheimer's Story

When I posted a link to 20 caregivers answer the antipsychotic question on a FB caregiver forum and asked caregivers what they thought, I became the subject of a vicious attack from a handful of forum members. “Fuck her and her judgmental ass,” one person wrote.

I was saddened but not surprised by the response. People who feel threatened, overwhelmed and/or afraid often react aggressively. Ironically, that’s one of the main reasons people living with dementia get labeled and sedated. Some family caregivers have no choice but to give their loved ones antipsychotics, and many others believe the misinformation told to them by various sources. I know. I’ve been there.

And, truth be told, when given in the lowest possible doses, for the shortest possible time, these medications may provide temporary relief in untenable situations for some people, without too many adverse side effects. But that’s not what happened with my mom, and it’s not what happens with tens of thousands of others, particularly in long-term care facilities where the inappropriate use of antipsychotics remains a huge problem despite efforts to stop it.

For example, Jessica S. shared her story in a comment on the same blog post:

I agree whole heartedly. My grandmother was diagnosed with Alzheimer’s early on. We put her in assisted living where she could thrive, as we wanted her to have people to watch over her and still have her own space. Was only a month when she fell & broke her arm. They didn’t call us, acted like they had no obligation to & so we took her out & brought her home until we could find another place that would be good for her. (Because of family stealing from my grandmother we had been thru court & have legal guardianship over grandma.

The new place is where the drug war started. I had a fit when I arrived to visit & my grandma was a disaster. She mentioned to the Dr she was having anxiety. Instead of prescribing her a low dose benzos on an as-needed basis they started her on Zoloft, Seroquel & other drugs. It was like my grandmother had end stage Alzheimer’s. She had no idea what was going on & didn’t know much of anything happening to her. It was like she was lost to us. I asked them to take her off all the meds.

Some of them she had to be weaned off of & the Dr was combative telling me that her Alzheimer’s had progressed & this was what happens. I was furious at her. I still battled & demanded they take her off of EVERYTHING. I knew about weaning her off so the next few times I visited they had her on just a couple meds & claimed they were still weaning her off. More time passed & I was there again during numerous med moments & I was surprised to find they were STILL giving her the Zoloft, the Seroquel & her aspirin. That sure explained why she was only “sort of” better.

After numerous discussions I finally went at the Dr, this time snarling & angry like a rabid dog so she would have no doubt about how serious I was & demanded she get my grandmother off of all of it except her aspirin. I was MAD. Finally that ended & grandma got back to her normal self. We ended up moving her again because I felt they didn’t really care about my grandmother & that was probably where her anxiety was coming from.

The “Side Effects” of all 8 meds they had her on was dementia, delusions, memory loss confusion & many other words describing those symptoms. Why would a Dr prescribe that for a patient who already had those problems? To top it off, the Dr was more interested arguing the point of what a “side effect” was versus a “secondary effect” & some other crap, like changing the name would fix the problem. She treated me like a moron.

Little did she know I was also in the medical field & worked for a Dr who treated me like a partner, he taught me way beyond the scope of my job, not because he expected me to practice medicine with him but because he wanted me to be knowledgeable. I went to pharmaceutical meetings with him & learned a whole lot about medication, I also have a natural curiosity that keeps me reading about all things medical. My grandmother’s Dr didn’t know the scope of what she was dealing with & wanted us to obey her & drug my grandmother up so she wouldn’t be a “problem”.

At that point I was just angry that it was even legal to prescribe one of these medications to an Alzheimer’s patient but prescribing 8 of them at once? I think my grandma would have died had we not been paying close attention to her. Now she is in a small assisted living community, only 16 people can live there & it is so new only half of it is full. She was the first to move in. She doesn’t have anxiety anymore & takes only her aspirin. Her Alzheimer’s has only slightly progressed & she is happy there. Paying close attention is key & questioning the Dr is critical when something isn’t right. Those medications are horrid & make the problems worse.

I laughed out loud where Jessica says “& the Dr was combative.” You rock Jessica, I thought. A woman after my own heart.

Why don’t we throw all these destructive labels right back in the faces of the people who insist on applying them to people who live with dementia, and likewise call them “resistant, combative and aggressive” when they don’t respond in the way we want?

You go Jessica.

https://myalzheimersstory.com/2015/04/19/20-questions-that-help-explain-why-people-with-dementia-get-agitated-and-physically-aggressive/

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Advocacy, Toward better care, Videos

stand up for better care

October 22, 2017May 1, 2019 My Alzheimer's Story

During the last two years of her life, after she was made to sit in a wheelchair (despite the fact that she was still able to walk), I didn’t know if my mom had been given the opportunity to stand up and walk on the days I wasn’t able to go to “ElderJail” to help her.

I visited virtually every day to ensure she got some exercise. But on rare occasions, I had to miss a day or two. When that happened, it was harder for her to get to her feet when I returned because (I guessed) no one had helped her to do so when I wasn’t there.

Mom was still able to walk, but she was confined to a wheelchair for “safety” (read: convenience)

It broke my heart to find Mom frustrated, pulling herself along using either a railing (where the hall was wide enough for railings), or her hands (where it was narrow), to get from one end of the building to the other – a distance of about 125 feet, after which she would come to a dead end, turn around and pull herself back again.

No wonder she got agitated. No wonder she wanted to stand up and walk. No wonder she was sometimes in a bad mood. I would have been too!

Imagine what it might feel like. How long could you sit in one place with nothing to do without getting “fidgety?” I asked people that very question in a Short Survey on Behaviour. Guess what? More than 80% say they would become restless in less than 40 minutes.

Yet many LTCFs (including the one my mom was in) expect people to sit quietly with nothing to do for hours on end, and when they don’t, they get labeled “agitated” or “anxious” and in need of being sedated.

Q: How long could you sit in a chair with nothing to do before you would feel restless, want to get up or start to fidget?

Despite everything they did in #DementiaJail to discourage my mom from standing up and walking, it didn’t stop her from believing in herself. When I went to see her on September 27, 2015, her 87th birthday (listen below), she was in good spirits, and ready to try standing up “for God’s sake!”

Her courage continues to inspire me to#StandUpForBetterCare. Because what we have now just isn’t good enough.

https://myalzheimersstory.com/2017/10/09/how-my-moms-affection-got-mislabelled-aggression/

https://myalzheimersstory.com/2017/10/02/loud-sounds-and-dementia-mostly-dont-mix/

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Challenges & Solutions, Toward better care, Videos

how my mom’s affection got mislabelled “aggression”

October 9, 2017May 19, 2018 My Alzheimer's Story

My mom had an unflaggingly positive attitude, as you will hear in the video at the end of this post. It features an audio clip I recorded on Mom’s 87th birthday in 2015; the last one we would have together. When I suggested to Mom that she needed a new sweater because the one she had on was moth eaten, she responded “It’s getting better.”

Everything was always “getting better” as far as Mom was concerned.

She was also outgoing, friendly, interested, engaging, and invariably the life of the party. She adored people, and was highly socially adept. So how did she come to be labelled “violent” and “aggressive” after she moved into a long-term care facility? There was a cluster of reasons, none of which were here fault, nor the fault of dementia. Ironically, one of the reasons was love.

Mom had a habit of giving people what she called “love taps,” light, rapid-fire pats on the hand, arm, cheek, bottom, or whatever recipient body part happened to be in close enough for her to reach. She had done this, as a sign of affection, for as long as I can remember. As her Alzheimer evolved, and her ability to verbally articulate her emotions declined, “love taps” and clapping often replaced words. She used them to express delight, happiness, frustration, and displeasure.

Unfortunately, her love taps and clapping were sometimes not well received, particularly (and understandably), by other residents who lived with dementia, and who didn’t “get” what these “slaps” were about.

But the staff should have known better. Sadly, instead of looking at the meaning of the behaviour, they labeled it “violent” and “aggressive,” and, as a result, Mom was medicated with dangerous and debilitating antipsychotic drugs.

I think that’s abuse. What do you think?

20 questions that help explain why people with dementia get agitated and physically aggressive

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Image copyright: lonely11 / 123RF Stock Photo

Advocacy, Challenges & Solutions, NHBPS, Toward better care

don’t make things more difficult than they are

March 16, 2016April 27, 2018 My Alzheimer's Story

“When people think of ‘dementia,’” the article said, “it is natural to next think ‘memory loss.’ What we may not be prepared for is how other behaviours can change and even become difficult to manage. In fact, it is these difficult behaviours that families report as more troublesome than memory loss.

“Difficult behaviour” the article continued, “includes actions that are unsafe, destructive, highly upsetting or dangerous to self or others.” I get annoyed with care professionals who continue to propagate this kind of misinformation. I left a comment at the bottom of the article:

“I really wish people would stop referring to ‘difficult behaviours that occur with dementia’ and start referring to them for what they really are which is ‘normal behaviours caused by lack of knowledge, unsuitable environments and unhelpful approaches to caring for people with dementia.’”

I was encouraged when researcher, consultant, author, and dementia care advocate Leah Bisiani followed with this piece of wisdom:

“I agree with Susan regarding the unfortunate and outdated terminology used describing some behaviour of people who live with dementia as ‘difficult’ or ‘challenging.’ We all exhibit behaviour that can be perceived as difficult. Who among us hasn’t cried in frustration? Lashed out in anger? Spoken loudly during an argument? Left a room when we’re upset?

People who live with dementia experience the same range of emotions we all do. But their situation is far more complex than ours. Can any of us really understand the reality of those who live with dementia? How hard it must be? How traumatic?

When we describe behaviour and label people as difficult or challenging, we completely miss the mark. What we should be doing is questioning why we, cognitively aware individuals who have the ability to use our imagination, compassion and empathy, continue to disregard the unmet needs of people with a brain disease as they try to cope with a constantly changing and confusing world as well as unfair expectations.

It’s our responsibility to adjust ourselves and understand that our behaviour is more often than not the cause of behavioural expressions of people living with dementia. By truly understanding the specific needs of every individual and then meeting them, ‘problematic’ behavioural expressions can be reduced and even completely prevented.

It’s up to us to enter the reality of those we care for, to go into the world they live in where, without us, they would otherwise be alone. Each of us has the right to make our feelings known, to communicate our love, happiness, anger, displeasure, frustration or whatever else we feel in the best way we can, either verbally or through behavioural expressions.

Anxiety related behaviours that are described as ‘difficult’ or ‘challenging’ are actually efforts to communicate. They frequently occur when caregivers dismiss or neglect the differing reality or unmet needs of the people they care for.

Care partners who understand cognitive restrictions and provide care that respects the preferences of persons living with dementia in ways that least exhaust their capabilities are able to minimize or avert the kinds of behavioural expressions that negatively impact both the lives of care partners and persons living with dementia.”

I couldn’t have said it better myself, Leah Bisiani; thank you for making so much sense. If you need proof of your own, take this three-minute survey on behaviour.

https://myalzheimersstory.com/2015/04/19/20-questions-that-help-explain-why-people-with-dementia-get-agitated-and-physically-aggressive/

https://myalzheimersstory.com/2017/05/02/wandering-is-not-a-symptom-of-dementia/