The Impact of Anosognosia and Noncompliance

In Part 2 of this video series, Lindsay Galvin Rauch, Owner of Event Design Group, and Xavier Amador, PhD, Cofounder and CEO, The Henry Amador Center on Anosognosia and the LEAP Institute, discuss how anosognosia impacts treatment noncompliance and the impact on family dynamics.

In the previous Part 1, they addressed defining and diagnosing anosognosia as it relates to severe mental illnesses, such as schizophrenia. In the upcoming Parts 3, and 4, Rauch and Dr Amador will discuss how to incorporate the LEAP approach in collaborative care, and the importance of the DSM-5 revisions on educating clinicians on diagnosing and treating patients with anosognosia.

>>Catch up on Part 1: Defining and Diagnosing Anosognosia

>>Watch Part 3 Now: The Importance of Collaborative Care in Anosognosia Treatment

Read the transcript:

Lindsay Galvin Rauch: Are there other ways that affects people with schizophrenia other than the noncompliance with care?

Dr Xavier Amador: Yeah. And you can relate to this with your brothers. It affects our relationships with our loved ones. As we try to help, as your mom tried to help and you've tried to help and you're still helping. If we try to educate the person that they're ill and they have anosognosia, we try to educate the person. They need treatment with a capital N. You need treatment. We create a conflict. We create discord. Imagine if I told you... I'm assuming you don't have diabetes, correct?

Rauch: No, I don't.

Dr Amador: You didn't sign a HIPAA release, but I'm going to ask you anyway, would you inject yourself with insulin if I asked you to?

Rauch: No.

Dr Amador: Oh, why not?

Rauch: But because I don't have diabetes.

Dr Amador: And what might the insulin do to you?

Rauch: Make me very ill.

Dr Amador: Very ill. It could even kill you, by the way. Well, that's what I hear from people, from patients with anosognosia for schizophrenia and related disorders. I don't need the medication just like you don't need the insulin, and it's going to hurt me. And I've even heard in some is the paranoid belief that it will kill me. It's poisonous. That's what it's like. So, to answer your question though, kind of more succinctly anosognosia can destroy relationships if we don't learn how to approach the person differently. I can't convince you to take medication that you think is going to harm you, not with logical argument, right? Nor would I want to by the way. But that's what happens in the case of somebody with anosognosia for a psychiatric illness. People come at them, their loved ones like you and me, come at them with education, with please, please to go get help. And it's met with fear and then anger.

Rauch: And then breaking of trust because then they ultimately don't trust you anymore.

Dr Amador: Especially when you call the crisis team and have them hospitalized against their will, which I've had to do. Yeah.

Rauch: Me too. I remember having to do that as a child.

Dr Amador: Yeah.

Rauch: Because I was home alone with one of my brothers. And in my family, a good example of that I think of is that I'm really... Myself and my brother Michael are really the only 2 out of 9 of us surviving that have relationships with our affected brothers because of that exact reason. I believe that my other siblings over all these years have given up on communicating with them because they just try to give them advice or tell them what to do. And they don't take the time to listen and really hear what they're saying. And even if what they're saying is incoherent or word salad, they're unwilling to listen to it. And they just say, "Oh, quit being ridiculous or stop it, or you don't know what you're talking about or you're crazy." I think even my family to this day might use that kind of language with my affected brothers. And it's really sad to see that they no longer have relationships with their siblings as a result of it.

Dr Amador: That's all too common in my experience. And I have 2 siblings, Lindsay, who used to think that my brother Henry had control over his symptoms, and he should just cut it out and he's trying to get attention. I mean, just those were irrational thoughts. I mean, delusions and hallucinations to get attention. And I have to forgive them because they really didn't understand serious mental illness nor were they willing to learn about it because they had very, really intense reflexes to it. It's like he's doing this on purpose. It's under his control. He's being difficult. He wants attention. He's being stubborn. And by the way, I'm guilty of some of those things, early on, even though I knew he had mental illness, I thought he was being stubborn and immature and difficult when he said, "I don't need help." That's where I share some of the same shortcomings of my 2 siblings that I'm not going to name, but I have a lot of siblings. So it's okay.

Rauch: Well, our family has spent a lifetime with that approach. The approach that doesn't work. And it was only through my being introduced to you and even this term anosognosia that had never over the course of my parents' lifetime of caring for my brothers. I think my first brother became ill in 1963. Both my parents passed away in ‘03 and ‘17 without ever knowing what anosognosia was or what it meant or how they could help their affected children who haven't. So, I was so thrilled to be introduced to you. And it has made a world of difference in my relationship with my brothers. And I've shared it with a lot of people, including my other siblings who don't seem terribly interested in learning at this point about it. But what is the best treatment plan for people with anosognosia? How do you go about treating somebody with this condition?

Dr Amador: Well, can I rephrase your question?

Rauch: Sure.

Dr Amador: How do you go about communicating with that person and building a relationship founded in trust that leads them to accept treatment, right? How do you build that relationship? How do you communicate? And what I learned quite by accident in my training was to stop talking, stop trying to convince, stop trying to educate and lead with my ears instead of with my mouth. So in other words, ask the person, "What is it you want?" So when I was working with this one woman on an inpatient psychiatric unit during my internship year before I got my doctorate, she was just like my brother. "There's nothing wrong with me. I need to get out of the hospital. My mother called the police on me. She was wrong to do that. The police were absolutely abusive," and they weren't, but that's how she felt. That was her experience.

And what I learned to do, thanks to a very wise supervisor I had at the time was to listen and reflect back. So, you're not sick. So you were wrongfully locked up in this hospital and then to ask her, "What is it you want?" And big surprise, what do you think she wanted? To get out of the hospital.

Rauch: Get out of the hospital. Right.

Dr Amador: And I said, "Well, let's work on that together. Let's get you out. Well, the only way we can get you out of the hospital is if you agree to take this medication that you're telling me, you don't need, right?" So I'm using her language. I'm using her words, I'm using her goals to create a relationship, which is a handshake where she feels like I'm on her side and I'm working on the same goal, which in that case was getting her out of the hospital.

Rauch: That's so, it's just brilliant. So it's really not about how you're going to treat them. It's how you can communicate with them in order to get them to partner with you to accept treatment

Dr Amador: Exactly how.

Rauch: Even though they still may not…they're not ill, but.

Dr Amador: Well, it's not even may. The research on anosognosia indicates that this is a stable symptom over time. So even with treatment, people, the majority, not everybody, there's always exceptions when you do clinical research, right because we're doing them on groups, but the majority of subjects studied in longitudinal studies, studies over time, their level of anosognosia of unawareness of being ill doesn't change even with successful treatment. So the relationship, if you've built a solid trusting relationship with a person's partnered with me to accept treatment for an illness they don't believe they have, but they're going to do it for me. And I could go on about this in a lot of detail, how that works out, it's counterintuitive this approach, but if the relationship can be built on a strong foundation of trust and mutual respect and a lack of judgment, that's going to last for years, and those years are more likely to include treatment because of the relationship.