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Anosognosia Education Could Help Clinicians Treat Schizophrenia More Effectively
Anosognosia, a condition where a patient is unaware of or unable to perceive their mental health condition, affects a large percentage of patients with schizophrenia and knowledge of it can help clinicians and caretakers better treat patients, says Linsday Galvin Rauch in part 5 of this 6-part video series.
Throughout the series, Psych Congress steering committee member and CEO of Orbit Health Telepsychiatry, Encino, California, Edward Kaftarian, MD, interviews Galvin Rauch about her journey from victim, to advocate, to champion as one of 12 siblings, 6 of whom were diagnosed with schizophrenia.
Galvin Rauch and author Robert Kolker were one of this year's featured sessions at Psych Congress in San Antonio, Texas. Their session "Hidden Valley Road: A Story of Family, Trauma, and Hope" walked attendees through the writing of the critically acclaimed novel “Hidden Valley Road: Inside the Mind of an American Family” that centered around Galvin Rauch's family and their contribution to critical scientific discoveries in schizophrenia.
Catch up on the series:
Part 1: Family Impacts Awareness and Research of Schizophrenia While Living With the Condition at Home
Part 2: Sibling of Brothers With Schizophrenia Finds Hope Through Therapy and Connectedness
Part 3: Genetic Research Offers Hope to Family With 6 Siblings Diagnosed With Schizophrenia
Read the transcript:
Dr Kaftarian: This is a glimpse into the unique challenges that people have. Not only people suffering from the disorder, but also the families. It's not enough that you had to be heroic in the sense that you were showing grit, courage, and hope.
That wasn't even enough. You had to use your creative mind to figure out how to navigate a system. You had to also be smart, which you are, clearly. Essentially, you had to check a lot of categories in order for your sibling to get the care that he needed, that he deserved.
He was caught in a unique position, where he had a significant medical condition, and a significant psychiatric condition.
The medical providers, oftentimes, in that situation, want nothing to do with people that have mental health challenges. Mental health people often want nothing to do with people who have severe medical conditions. These patients are stuck in the middle. Did you feel that way, too?
Galvin Rauch: They're stuck on the streets, is where they're stuck. Unless there's a family member that will take them in, which is often not the case. A lot of family members turn their back on their children, mothers, siblings, nieces, and nephews.
Dr Kaftarian: So, if you don't turn your back, you have to be basically an exceptional person to be able to get through this. Also, your siblings had to actually take their medication, and do the things that maybe they were, in some cases, not capable of doing, because they had the brain condition.
The condition of the mind that resulted in them not even knowing that they had the condition. You've spoken about anosognosia.
Galvin Rauch: Yes, correct.
Dr Kaftarian: Can you share with the audience what that means?
Galvin Rauch: Anosognosia, first of all, took me months to learn to pronounce properly.
If you go online now, there's some debate as to whether I'm even saying it right. I learned about this condition through a TED talk that a friend turned me on to. He's a TED coach. He's like, "Hey, I watched this TED talk the other day on schizophrenia. You got to check it out."
I watched it and it blew my mind. That I had lived my whole life unaware of the secondary condition of anosognosia, which often accompanies...Over 50% of people with schizophrenia also suffer from anosognosia. This is where the educational gap is.
Not only in your profession, because I've had numerous psychiatrists tell me they had no idea what this was, but also with the general public. The general public's perception of people that are living on our city streets that are mentally ill.
It shows up, not just in schizophrenia, but schizoaffective and bipolar, as well as eating disorders, drug addiction, Alzheimer. People with Alzheimer don't know they have Alzheimer. It's actually a lesion. There are a number of different specific reasons, that brain damage that causes anosognosia.
The one that is most closely related to schizophrenia is in the prefrontal cortex. I can be more specific than that, if I had the scientific language. I don't have it yet. I'm learning it.
It's a lesion in the prefrontal cortex that prevents them from being able to self-reflect. An example of that would be, yesterday, I walked down my sidewalk. I tripped on a crack in the sidewalk.
Tomorrow, when I walk down that sidewalk, I'm going to be aware that there's a crack there. I'm not going to trip again. Hopefully, I'm going to have that awareness.
Somebody with schizophrenia may be psychotic yesterday, and their medication may be working better today. They can't learn that it was because they took the medication that they now are doing better, because they don't have the ability to self-reflect. It's hard to explain. It's not denial. It translates in Greek as unawareness of your own disease.
Dr Kaftarian: When we write notes on patients, and the mental status examination includes insight. We always comment on the level of insight that a patient has. The lay public or family members of people with schizophrenia, do you think that they don't realize that the patient doesn't know that they're sick?
Galvin Rauch: Yes.
Dr Kaftarian: They think the patient knows that they're sick? They think the patient knows?
Galvin Rauch: Yeah.
Dr Kaftarian: Even though the patient doesn't want to take medication, resists treatment, is, oftentimes, confused and delusional, you're saying that the family thinks that they know that they're sick?
Galvin Rauch: How could they not? It's so counterintuitive. It's the root of frustration for families, for police officers, for the criminal justice system, for practitioners.
Dr Kaftarian: They think the patient is choosing to be difficult, is choosing to not take their medications or to behave inappropriately. If they could just behave differently, everything would be fine.
Galvin Rauch: Yeah. I have to tell you, I struggle with the word behavioral health. It implies that somebody has a choice. I know it's a big debate in the community. Some conditions, they do have a choice. When it comes to anosognosia, they really don't. It's a brain damage that prevents them from being able to recognize.
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.
Edward Kaftarian, MD is a nationally recognized psychiatrist and leader in the field of telepsychiatry and healthcare technology. Trained at the Johns Hopkins Hospital, he is board-certified in Psychiatry, Forensic Psychiatry and Addiction Medicine. Dr Kaftarian has served in a variety of executive roles within the California prison system, including chief psychiatrist, senior psychiatrist, medical director, and director of pharmacy. He is the founder of California’s Statewide Prison Telepsychiatry Program, which is the largest correctional telepsychiatry program in the world. Dr Kaftarian is currently the Chairman and CEO of Orbit Health Telepsychiatry, a company that provides telepsychiatry services to jails and prisons.
