tardive dyskinesia – My Alzheimer's Story

In the world of dementia care, and problably elsewhere for that matter, a restraint is anything that restricts or controls a person’s behaviour. Restraints may be physical, chemical, and environmental; all three were inappropriately and unecessarily used on my mother in the long-term “care” facility (aka known on this blog as Dementia Jail), in which she resided during the last four years of her life.

The staff argued that restraints were necessary for my mother’s safety and the safety of others, as well as to promote her well-being and to enhance her life. All of this was patently false. The chemical, physical and environmental restraints she endured caused her emotional, psychological and physical harm, accelerated the progression of her dementia, and ultimately contributed to her death.

That’s the big picture.

The subject of this post is one small example among many that demonstrates the impact that “hidden” physical restraints had on my mom as she lived with the Alzheimer disease in its later “stages.” I have no doubt that tens of thousands of people living with dementia in LTCFs suffer the same agitation, frustration, and anxiety my mom did day after day as a result of similar kinds of restraints.

On September 10, 2014, when I arrived for an afternoon visit, I found Mom trapped in the recliner in her room. An armchair was wedged under the recliner’s footrest to keep her from being able to either sit up or stand up. Mom was agitated and confused as a result, as you will hear in the short audio clip below.

I invite you to pay particular attention to Mom’s voice and the underlying meaning of her words.

Do you hear the fear? The confusion? The worry? The stress? The helplessness? All of it completely unnecessary. In like situations this upset would have been misidentified as being dementia-related, which sometimes would have been provoked into aggression by improperly trained and/or overwhelmed care workers, which was in turn used as an excuse to further restrain my mother by sedating her with Seroquel and Risperdal, whose side effects both include increased agitation and anxiety!

It made me furious at the time. It makes me heartsick now.

Listen (and read along with the transcript at the bottom of the post if you wish):

This was by no means an isolated incident. I took a photo of the same chair-under-the-footrest strategy still being used 18 months later:

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I found Mom restrained in one way or another virtually every day I visited her during her entire four-year stint in Dementia Jail. And she wasn’t the only one. Far from it. It’s no wonder people get agitated and aggressive and try to escape! What would you do if someone tied you to a chair and left you there for hours on end? If you are like 90% of people, you would try to escape. And if you couldn’t? How might you feel? Anxious? Afraid? Upset? I’ve written a fictionalized version of this and other scenarios through the eyes of Alzheimer Annie to help people imagine living in a LTCF from the perspective of someone living with dementia.

Ironically, the day following the occasion in the audio recording I took Mom down to the Thursday morning music session, and captured her singing one of our favourite tunes:

Transcript of the audio recording:

Susan: Hi.
Mom: Well listen dear I wanted to to to to…Could you call me up like this?
Susan: Yeah, I see.
Mom: Well listen. I I I I… There’s something that’s not right with my… My my my..
Susan: Something that’s not right with your what Mom?
Mom: Well with my my my th th th it’s it’s it’s
Susan: Where Mom?
Mom: Could you lift me up a little bit? I can’t I can’t I can’t get lifted up.
Susan: Yeah, ‘cause they’ve put the chair, they’ve put the chair underneath the thing so that you can’t move.
Mom: No, well th th th they keep doing that. I don’t know what it’s for. ‘Cause I’d like to la la la linger, with my, ya know, with my – there’s something that’s bad, that’s not good.
Susan: Yes.
Mom: And so so I went to wa wash my face, and the thing wasn’t right. And could I get up? Can I get up for you? And and and and I can tell you all about it.
Susan: Yes.
Mom: Well it’s, it’s not good.
Susan: No, I can see that.
Mom: And the thing is that I need the help.
Susan: Yes.
Mom: You know, I need the help. I just can’t go on with it.
Susan: I understand Mom.
Mom: You know, so, so, so if it’s ih ih ih ih it’s definitely the the the the the song.
Susan: Yeah.
Mom: You know I can’t sing it with with…
Susan: You can’t sing the song.
Mom: No and it’s very, very…
Susan: It’s very what Mom?
Mom: Well it’s very—
Susan: How do you feel when you can’t sing the song?
Mom: Well it’s all ready, you know, it’s, it’s, it’s, it’s a bad sah song…
Susan: Yeah.
Mom: And so I don’t know what to do about it.
Susan: Okay. Well I’m gonna—
Mom: And then when I hear the the the the the the the the ohhh, it’s so songy on my song you know, and I don’t know what to do with it.
Susan: Yeah. Okay.
Mom: And uh, so I had to put it up, up against against your, against your…second song.
Susan: Okay.
Mom: And I wanted to get it fixed up. I don’t know what to do about it.
Susan: Okay. I’m going to help you, okay?
Mom: And uh it’s very sore.
Susan: It’s very sore?
Mom: Well you know it’s it’s —
Susan: Where is it sore Mom?
Mom: Well it’s sore on my—
Susan: Can you show me?
Mom: Well I’m going to sit up.
Susan: Okay, but you can’t sit up because the chair is underneath your – hang on I’m going to move the chair.
Mom: You can move the chair.
Susan: Yeah, I’m going to move the chair so that you’re going to be able to sit up. Because the chair is underneath the thing here, and it’s to prevent you from sitting up or standing up.
Mom: Uhhhh…
Susan: I’m gonna help you Mom. I’m gonna help you, Mom. Okay.
Mom: I’d like to put it inside the thing.
Susan: Okay.
Mom: But it doesn’t seem to work.
Susan: Okay, do you want to stand up? Look, we’re dressed in the same colours today Mom. I’ve got blue and pink on, and you’ve got blue and pink on. That’s nice.
Mom: Well I don’t know, I looked down at the at the at the…
Susan: Do you wanna stand up Mom?
Mom: Yeah.
Susan: Okay. I’m going to help you, okay?
Mom: Hmhmm.
Susan: On three. Actually, you know what…

And that’s when I decided to take pictures. So I would have proof. That’s what one does in the face of one lie after another after another after another. One gets proof. So the truth eventually unfolds.

https://myalzheimersstory.com/2018/01/23/hidden-restraints-hidden-abuse/

https://myalzheimersstory.com/2018/05/07/how-would-we-behave-if-we-were-locked-in-96-of-us-would-respond-the-same-way-many-people-with-dementia-do/

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Take my short survey on behaviour here.

Three years after my mother was inappropriately prescribed the antipsychotic medications risperidone and quetiapine, she began to exhibit unusual repetitive physical movements. She constantly crossed and uncrossed her legs, and she often held her hands out in front of her at chest height and fluttered her fingers as if she were playing an invisible piano.

Here’s one of the ways tardive dyskinesia manifested in my my mom (there’s another example at the end of the article):

As I had no idea what might cause her to do these things, I decided to investigate. It didn’t take me long to find that the culprit was not Alzheimer disease, as had been suggested to me. Rather, such movements are typical of a condition called dyskinesia, and more specifically tardive dyskinesia, a side effect of the use of antipsychotic medications such as haloperidol (Haldol), quetiapine (Seroquel), risperidone (Risperdal), and others. The likelihood of the condition manifesting itself increases with prolonged use, such as that of my mother.

Like me, you may never have heard of tardive dyskinesia. But you should know about it, particularly if you or someone close to you is taking, has taken or is being recommended antipsychotics. It’s important to fully understand the impact these drugs could have on you and others.

Here are 7 things you should know about tardive dyskinesia:

1 ) tardive dyskinensia may “look” like agitation, physical aggression, anxiety, nervousness, and/or be manifest in other ways that are mistaken as symptoms of and thus wrongly attributed to dementia-related diseases

2 ) you may be told that evidence of tardive dyskinesia is a “progression” of Alzheimer’s disease (ADRD) or a related dementia when in fact it is a side effect of an antipsychotic medication/ medications that has/have been prescribed (more than likely inappropriately) to someone who is living with ADRD

3 ) if someone you know who is living with dementia presents with physical behaviour(s) that include(s) repetitive gestures, twitching and/or unusual facial movements, and/or an inability to walk, the first thing to find out is if they are taking any antipsychotic medications

4 ) tardive dyskensia may manifest as soon as a person starts taking an antipsychotic medication, or according to Wikipedia, “the symptoms may appear anywhere from three months to several years after a patient begins taking antipsychotic medications (or may result from withdrawal after a patient has been taken off such medication).”

5 ) post menopausal women and women over the age of 55 are more likely to exhibit the symptoms of tardive dyskinesia

6 ) the Abnormal Involuntary Movement Scale is sometimes used to track the severity, progression and/or amelioration of tardive dyskensia in people who exhibit it

7 ) tardive dyskinesia may or may not reverse itself; it’s effects may be permanent, even if the person stops taking the medication(s) that caused it.

Here is another example of how tardive dyskinesia manifested in my mom (this video was taken on July 26, 2015; the day after the one at the start of this post):

You may have found yourself feeling agitated and anxious watching these two videos of my mom. Imagine what it would be like to experience a constant need to move and to have involuntary repetitive motions and shaking – that in itself would cause anyone to feel anxious. The irony is that Mom’s anxiety was wrongly attributed to Alzheimer’s disease, and used to justify never taking her off the medications that were one of the sources of her agitation. What a disservice to my mom!

I encourage you to look beyond the behaviours you see in the people you know who live with dementia, to identify the real causes, and then to use person-centered and relational approaches rather than inappropriate medications that should only be prescribed as a absolute last resort after everything else has been tried without success

https://myalzheimersstory.com/2018/08/15/the-dystonia-did-us-in-august-15-2016-2/

https://myalzheimersstory.com/2016/07/26/40-side-effects-of-seroquel/

https://myalzheimersstory.com/2020/02/04/i-called-it-the-seroquel-shuffle/