The Hidden Toll of Tardive Dyskinesia: Beyond Movement Symptoms

Welcome back dear colleagues to a discussion on the topic of the hidden toll of tardive dyskinesia: beyond movement symptoms. I am so looking forward to talking about this issue because in many ways, it's a reflection of my 30 plus year career because I started out not at all appreciating that there was a hidden toll to tardive dyskinesia. All I thought was it was just a movement disorder. So I may be a particularly good person to talk about it because I have seen the folly in my thinking and I am really deeply desirous of correcting it in my own practice.

So the truth is, we healthcare providers often visibly see the motor symptoms that our patients have when they have tardive dyskinesia. But the key to truly understanding and treating tardive dyskinesia is to appreciate that it has far reaching effects that impair our patients functioning at every level. In fact, it goes beyond that.

it also affects their relationships. I'll tell you more about that in a minute. But to really understand that, we must perhaps appreciate topic number one, which is the stigma associated with tardive dyskinesia and its impact on mental health. You may be wondering, stigma from who to whom? And I would say it's at multiple levels.

So psychiatry itself has a stigma against the diagnosis of tardive dyskinesia. This is the truth. Perhaps seven or eight years ago when I was training a group of fellow clinicians on tardive dyskinesia, a colleague of mine, perhaps a couple of years older than me and perhaps a couple of years more experienced than me in the world of psychiatry, said this to me very quietly, very thoughtfully.

He said, Rakesh, I have spent an entire lifetime trying not to find tardive dyskinesia in my practice. And now you're saying I should look for it. And in that statement from our colleague, really, it's a sad commentary on where psychiatry as a specialty has been for the last 40 some years, which is fear of tardive dyskinesia and a desire to look any other way but at it straight in the face. And I was wondering why do we have so much trouble with tardive dyskinesia? And I think the reason was because it's iatrogenic. It's the only disorder in DSM that can only be caused because of a medication prescribed by a healthcare provider like you and I.

So I think there's a special level of guilt we have that we probably won't have if a patient develops a panic disorder or obsessive compulsive disorder. So that's the first level of the stigma that we in psychiatry have towards the diagnosis of tardive dyskinesia. But the other is until recently, we have not had a treatment option for it. And it's human nature when you can't do something about a condition, then the desire maybe subconsciously is to look the other way. Well, that has changed. And as a result, the stigma really should be dispelled. But the other stigma is from patients and the family members towards the diagnosis.

So the stigma is, my goodness, I have enough problems with my bipolar disorder or schizophrenia, you are asking me to deal with one more thing and you are the cause of it? The medications I've been taking that you told me I need, they have caused this condition that could be irreversible? Do you see how this battle of stigma kind of ricochets in the examination room all over the place and therefore talking about it openly, like in many ways you and I are doing, is indeed the right way to go.

Point number two I would like to make, it's the appreciation of the significant physical morbidity that occurs in our patients directly as a result of their tardive dyskinesia. Well, what have we seen? We have seen falls, we have seen dental damage, we have seen TMJ, we have seen patients have diaphragmatic complications because diaphragm is partly a voluntary muscle and it can be affected by tardive dyskinesia, aspiration risk goes up. Tongue biting is a challenge. And as said before, stumbles and falls can be a big problem. These individuals often burn themselves while cooking or cutting, and this risk only increases the risk of falls and orthopedic concerns as the population ages. But it's not just that though, folks. It's not just physical.

Research that my group and others have conducted have clearly and convincingly demonstrated patients with tardive dyskinesia have added psychological burden. What we found, their depression is worse, their hopelessness is worse, their social isolation is worse. They in fact also get ostracized by others. They do in situations of interacting on things such as going to the grocery store or in romantic relationships or even in families, where people don't want to go out in public with you because grandma quote unquote is embarrassing. She moves her mouth, she drops her food, she says words in a funny way. So yeah, biopsychosocial impairment is profound. And as a result, the very topic of this conversation which is looking beyond movement symptoms is unusually important.

Now, let's face the question of who is responsible for addressing the biopsychosocial impact of this disorder? And I think it's you and I. And of course, our patients and their family members, we are a team. As a result, when you and I do assessments on our patients, and let's for a second assume the patient has been correctly diagnosed with tardive dyskinesia, obviously based on an assessment of excessive involuntary movements, right? That is the basis of that diagnosis. The new data compels you and I to look beyond it, to look beyond the movement symptoms and look at the person with the movement symptoms.

Our training in the mental health field, whether we are MDs or DOs or NPs or PAs or non-prescribing clinicians, is to take a biopsychosocial history. You know what? We should do that with tardive dyskinesia too. If we use just the marker of physical movements, we are going to be ignoring more than half of the plight of this patient.

So many patients with tardive dyskinesia, while the excess motoric movements are a genuine problem, it is the psychological and social impact that truly robs the patient of quality of life. There is also no doubt that if we wish to address these psychosocial impairments, we really do have to focus on the physical movements. We do.

And that's why making the right diagnosis, initiating appropriate treatment as soon as it is feasible. And the third point is avoiding treatments that might worsen them. Those three are truly key features of taking care of a patient. So let's in summation, return back to the title of my brief conversation with you.

It is the hidden toll of tardive dyskinesia, but the truth is it's actually not all that hidden. The patient is reporting biological, psychological, and social impact. The toll is heavy. It's just that often my eyes are blind to the toll of psychological and social distress, and it is the call to duty for all of us to look beyond movement symptoms and look at the person with tardive dyskinesia and conduct an interview that you and I are really good at. A full assessment of biological, psychological, and social impact and whatever the impact may be in any of these three disorders, that then becomes the North Star of guiding us towards appropriate. treatment.

Well, dear colleagues, thank you very much for letting me speak to you from my heart. And I really appreciate the opportunity to be able to discuss where I was 30 years ago, where I am today, and where I'm hoping to be tomorrow, which is a clinician who truly appreciates all the hidden tolls that our patients with tardive dyskinesia face and a clinician whose heart is into helping the total patient, not just the movement symptoms. Thank you again and goodbye for now.