Defining and Diagnosing Anosognosia

In the first part of this video series, Lindsay Galvin Rauch, Owner of Event Design Group, interviews Xavier Amador, PhD, Cofounder and CEO, The Henry Amador Center on Anosognosia and the LEAP Institute, on defining and diagnosing anosognosia as it relates to severe mental illnesses, such as schizophrenia.

In the upcoming Parts 2, 3, and 4, Rauch and Dr Amador will discuss how anosognosia impacts treatment noncompliance, 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.

Continue with the series:

>>Watch Part 2 Now: The Impact of Anosognosia and Noncompliance

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

>>Watch Part 4 Now: DSM-5 Revisions, Educating Clinicians About Anosognosia

Read the transcript:

Lindsay Rauch: Oh, me too. I'm really looking forward to it. My name is Lindsay Rauch and I'm the youngest of 12 siblings that 6 of which are affected by schizophrenia. Three are still alive, 3 have passed. My family was the subject matter of a book called Hidden Valley Road: Inside the Mind of an American Family. And I was introduced to a gentleman by the name of Dr. Amador from a friend who watched his Ted talk. And I called him immediately after I watched his Ted talk because I had been so stunned and amazed that our family had lived with this condition for so long and was unfamiliar with it. So on that note, I'd like to introduce Dr. Amador and let him tell you all about him because he is just phenomenal. And I highly recommend his course and his information to anyone that's struggling with siblings who suffer from schizophrenia and anosognosia.

Dr Henry Amador: Thanks, Lindsay. And I'll just clarify the condition that you're talking about. You just got me thinking about this. This is a condition I started studying when I was Columbia University in New York for many years and had lots of grants to study the condition known as anosognosia, which is an unawareness of being ill. It's what people typically call denial or poor insight, but it actually isn't. So, I'm a clinical psychologist. I authored a book, I'm Right. You're Wrong. Now What? That is a book of mine, but I'm Not Sick. I Don't Need Help, is I think some of the material Lindsay you were referring to. Currently, I'm an adjunct professor at University of Utah and the executive director of the Henry Amador Center on anosognosia. Lindsay is a board member at our nonprofit, and it's named after my brother. I'm also someone who is a sibling of someone with schizophrenia.

Rauch: Dr. Amador, can you please give us an overview of anosognosia and then also how it is diagnosed?

Dr Amador: Sure. When I started my research way back in 1989, there were about 12 studies in the research literature on poor insight because as a clinician, I was encountering many, many patients with schizophrenia, schizoaffective, delusional disorder, bipolar disorder, who said, "I'm not sick. Leave me alone. I don't need what you're offering. There's nothing wrong with me." And they'd come back again and again and again to the hospital, having stopped taking the medication that we had given them to stabilize them. So, with my colleagues doing research back then, we began to look at neuropsychological function and found that the frontal lobes of the brain were very much implicated in that lack of understanding that the person is mentally ill.

Since then, there have been many, many studies looking at brain structure, MRIs, for example, brain function, functional MRIs, PET scans, finding abnormalities in the frontal lobes of the brains of people with these disorders who do not understand they're ill, and the syndrome, which was really named 102 years ago by the Hungarian neurologist Dubinski is called anosognosia.

It's a tongue twister. If I had been allowed to name it, I would've named it something very simple, but that's how I got into it. What really started me though, Lindsay, and I know you're aware of this, really started my interests in frankly, the conflict, this anosognosia causes was my experience with my brother, Henry. Eight years older than me, Henry had developed schizophrenia. And the first encounter I had with him around that illness was my attempts to try to convince him that he was ill. He was hearing voices. He had paranoid delusions.

I was trying to point out to him how his beliefs were irrational. The voices couldn't possibly be real. You need to see a psychiatrist.
And the response I got from him was at first pretty soft and firm. And then he got pretty angry and frustrated with me. And told me, I'll never forget what he said, "You're the crazy one, not me." I hadn't called him crazy, but that was really the very beginning of my interest in doing research in this area and then doing research in how do you help someone doesn't want help and doesn't understand they need help.

Rauch: I think my parents maybe thought that it was shame that it could present itself as the person is just ashamed of the condition and doesn't want to get help for that reason. But that's actually not the case, correct?

Dr Amador: No, it's not shame. It's not stigma. And this has been researched. You don't have to take my word for it. In other words, we've looked at the experience of shame, the experience of stigma. And does it predict whether you know you have one of these psychiatric illnesses or not, and shame and stigma does not predict that. What predicts it is executive dysfunction, frontal lobe dysfunction.

Rauch: So how is it diagnosed?

Dr Amador: It's really a practical diagnosis. If somebody has had ample opportunity to learn that they have one of these disorders and they haven't learned it. And it's been 1 to 3 months or longer that they continue to be adamant that there's nothing wrong with me, they're no longer considered to be in denial. They're really seen as somebody who has this neurocognitive symptom of unawareness.

Rauch: So how does anosognosia affect people with schizophrenia, and are there other conditions that present with having a similar condition?

Dr Amador: Great questions. First and foremost, it's the top predictor of who will refuse treatment or if they accept it, secretly drop out of it. Like my brother, he threw his antipsychotic medication in the trash can after his first hospitalization. The first hospitalization did wonders for the hallucinations and delusions. They really became subdued, but he threw the medication away. So anosognosia is the top predictor.

So the research show unequivocally of who will refuse treatment or stop treatment usually without telling anybody, although sometimes letting their loved ones know. We do see anosognosia in neurological conditions. So Alzheimer's disease, Parkinson's disease where people are unaware of their memory deficits and other things related to neurological condition. Many researchers in psychiatry believe we're also seeing it in substance abuse disorders, in eating disorders, and in OCD.

Rauch: I kind of think of it as self-communication. It's like the part of your brain that... I try to come up with an example to tell people like you and I walk up the stairs and we trip over that box that we left on the stairs. Well, next time we might have a higher level of awareness that there's a box there and be looking for it, whereas somebody with schizophrenia may not. I mean, that's putting in a very simplistic way, but they may have tripped over the box, and they'll just continue to trip over the box.

Dr Amador: Yeah. I like the analogy a lot. It's an inability to learn how you have changed or if I would put it in the first person, I have changed. So I injured my leg in December, and I learned that I had changed and I had an injury. When you have schizophrenia and anosognosia for that disorder, you don't know that your brain has changed. You don't know that you're thinking, your perceptions, your ability to understand shared reality has changed dramatically

Dr Xavier Amador is Co-Founder and CEO of the Henry Amador Center on Anosognosia and the LEAP Institute, which has trained tens of thousands of clinicians, family caregivers, law enforcement, justice officials, and legislators worldwide on the evidence-based LEAP® method. Dr Amador is an internationally renowned clinical psychologist, forensic expert, sought after speaker, and leader in his field. He is also a family caregiver of two close relatives with schizophrenia and another with bipolar disorder.

Lindsay Mary Galvin Rauch, is the youngest of twelve siblings, six of whom were diagnosed with schizophrenia—becoming one of the first families to be studied by the National Institute of Mental Health and the subject matter of Oprah's Book Club Selection, “Hidden Valley Road - Inside the Mind of an American Family” by Robert Kolker. Her journey inspired her to evolve from victim, to survivor, to advocate. She is also an accomplished co-owner of a meeting and event company for nearly 30 years, where she partners with industry-leading organizations, hospitals, doctors, and other keynote experts to produce impactful functions designed to engage and educate the public.