Advocacy, Antipsychotic drugs, Toward better care, Videos

tardive what? 7 things dementia care partners, care staff and medical professionals should know about this kind of dyskinesia

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

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4 thoughts on “tardive what? 7 things dementia care partners, care staff and medical professionals should know about this kind of dyskinesia”

  1. I can’t get over the similarities of your mom’s stare and my mom’s monotone expressions and my mother also had the repetitious movements which I wrongly tried to stop her from doing, not understanding it may have been the medications causing these very specific repetitions.

    As I saw your mom cross and uncross her legs I thought of my mother picking at the sewn seam on her slacks. Picking it as if it were lint over and over until I would reach over and still her hands with mine. The other thing she did was to pick at places on her face and nose. There didn’t seem to be anything there to begin with, but the repetitious scratching and picking at her face while she was sort of daydreaming, began to create sores and she was highly susceptible to herpes sores around her mucus membranes – nose, corner of her mouth,etc. and in a short time, she had open sores on the tip of her nose, the sides of her face, the corners of her mouth.

    Also her hands, arms and legs were so dry and peeling.We brought lotion and asked the nurses to please rub some lotion on her in the evenings and after washing to soften the flakiness of her skin. I don’t remember a single time I saw any of the many brands of lotion that we brought, used unless we did it ourselves.

    I know these may seem like small things, but they were the things we hoped the aides would help her remember to do. Brushing her teeth, using deodorant, making sure she was in clean clothes. I even brought
    home some of the items that the laundry didn’t bother to really get clean and I would scrub them and bring them back to her. Instead, we found missing clothes constantly, and after a very bad situation where her ring was missing for 3 days and “miraculously” found when we threatened to bring the police in to question the aides. My sister and I were on hands and knees, in every drawer, pocket, etc. looking for the ring that my mother never took off. My father had taken the diamond from her engagement ring and her mother’s wedding band and had a jeweler make a new design using all the stones in gold. Very unique and very 1960s style. But mom wore it always. Yes, she would forget many things, but there was no reason to have taken that ring off, and when it was “found” by an aide in mom’s room, we were in a different area when the aide called and said -“well, there it is Wini!” It was in an upper shelf of the small kitchenette that was never used except for me to store bags of candy mom loved to hand out to the aides. I KNOW it was not there. I cleared every cabinet out, so apparently, the aide brought it back and put it in the cabinet “to be discovered”.

    At that point, we took all of mom’s jewelry, earrings, bracelets, pins, all the things she loved to dress up with daily and brought them home. Then we took her to JC Pennys and let her pick out all kinds of inexpensive pieces that she had fun selecting but total cost was not even 1/10 of that one ring. But even that jewelry was
    taken a few pieces at a time over the next months.

    I believe that the caretakers who know that patients are in early stages of dementia are good candidates for theft. My mom knew she was missing certain things, but was told over and over, that “no, no one had taken her things” “she must just be forgetting where she put them”. This started to happen to my mother within weeks of the knowledge by the staff that she was ‘slipping’ into a deeper dementia and they could blame confusion. Luckily, we threatened police on the ring and when it was returned, we KNEW better than to leave anything of value. We used to leave her change and dollar bills that she liked to give to special aides along with bags of candy that we brought to fill her dish and share. But once she became unaware of her things, items began missing regularly.

    I’m sorry for the long post. I guess your stories bring up some of the issues we dealt with for my mom as well as knowing that if SHE was taken advantage of with the staff knowing we were around regularly, can you imagine what was taken from those patients who had no family to watch over them?

    It must have been hard to make these videos of your mom – I know watching her struggle is painful for me to see. But we never thought about documenting things like you did and I only wish we had. Thank you for sharing all the difficult parts of your mom’s life with us. I hope it will make a difference for those in the future.



  2. I would really love to know if you did a reduction of medication since you determined this was Tardive Dyskinesia, if so how is she acting now? Have her repetitive behaviors improved or worsened?


    1. Hi Gina,

      Unfortunately, I was not the one in legal control of my mother’s care, and while I believe over time they did reduce the dosages of antipsychotics I don’t know to what degree or when. However, the tar dive dyskinesia did abate somewhat, which is partly what makes me believe they reduce the medication. That, and the fact that she became more alert and “alive.” From what I’ve read, tardive dyskinesia sometimes reverses itself and sometimes not. I suggest you Google it.

      Good luck, Susan


  3. My father was given just 4 oral doses of Haloperidol (Haldol) while in hospital. He had moderate mixed dementia – Alzheimers and dementia. He developed Neuroleptic Malignant Syndrome as a result of this medication. Please google this life threatening condition to learn more about it. He still suffers from the side effects of this antipsychotic even though it was stopped 3.5 months ago. These include the inability to walk unaided and falls. His reaction to Haldol escalated his dementia to an advanced state.


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