Research Briefly: What in the world is anosognosia?
TAC is pleased to premiere Research Briefly, a periodic blog focused on timely research and pertinent information surrounding severe mental illness (SMI), with “What in the World is Anosognosia?” by renowned clinical psychologist, author, speaker, and subject matter expert on anosognosia, Dr. Xavier Amador.
As TAC’s new scientific officer, Dr. Amador will also host our new podcast SMI Spotlight and social media content like At Home with Dr. Amador. Our goal is to provide the research, resources, treatments, and tools that our community craves and needs to more effectively help everyone impacted by SMI.
What in the World is Anosognosia?
My brother had just come home after his first hospitalization for schizophrenia. The medicine he had been given brought him back to reality, but within a day of his getting home, I found the pills in the garbage can. Naturally, I asked him why he had thrown them out.
“I’m okay now. I don’t need it anymore,” he explained.
Since this ran counter to everything he was told in the hospital, I made a point of reminding him, “But the doctor said you’re going to have to take this medicine for the rest of your life. You can’t stop taking it!”
“He didn’t say that.”
“Sure he did! I was at the family meeting, remember?” I countered.
“No. That’s not what he said.”
“Yes, it is. Why are you being so stubborn?!” I said.
“It’s my business. Leave me alone.”
“When you got sick, it became everyone’s business. And besides, I’m worried.”
“I don’t want to talk about it! Just leave me alone,” he said as he walked away.
With every dose of “reality” I tried to give my brother Henry, he countered with more denials. And with every go-round we both became angrier and angrier. My instinct to confront his denial and educate him about an illness he was certain he didn’t have, only made things worse.
As a clinical psychologist specializing in psychotic disorders like schizophrenia, I have worked with thousands of families. I have heard and seen firsthand the same conversations that I had with my brother. For seven years, my brother and I went round and round. For seven years he became increasingly paranoid, angry, isolated, homeless for a time, and so lonely. His friends fell away one by one as did many of our family members.
Sound familiar?
Whether you are a family member, clinician, or other professional tasked with helping someone with mental illness, my goal is to save you from the same mistakes I made. It wasn’t until I understood that Henry was not in denial that I discovered, and then honed, tools that helped me to gain his trust. Trust that helped Henry to accept treatment and recover.
Henry stayed in treatment for nearly twenty years, the rest of his life in fact, despite never believing he had schizophrenia! How that happened will be a topic of an upcoming blog.
Here, I want to tell you how this dramatic change started: it only happened when I figured out that he was not suffering from denial. My previous attempts to convince him, to break through the denial, only drove him further away. I was carrying out Albert Einstein’s famous definition of insanity: doing the same thing over and over again, and expecting a different result.
I didn’t stop this futile approach until I learned what was really going on, until I discovered that Henry had anosognosia. My brother was suffering from a neurocognitive symptom of the brain disorder.
Anosognosia was first described in 1914 by a neurologist named Joseph François Babinski. Babinski coined the term which has Greek roots and literally means: a, without; noso, disease; gnosis, knowledge. But he didn’t use it to describe people with psychiatric disorders. That didn’t come for another 75 years when researchers like myself, my colleagues, and other scientists worldwide began to study this symptom in psychiatric disorders.
What was this anosognosia that Babinski described over one hundred years ago? To start, he described this symptom of brain damage in neurological patients. The classic description is of someone paralyzed on one side of their body, a condition called hemi-paresis, yet completely unaware of the condition and unable to understand they were paralyzed!
One 42-year-old man I evaluated on a neurological ward had been in a car accident and had suffered serious brain damage, leaving him paralyzed on the left side of his body. When I met with him, I asked if he could raise his left arm for me, and he answered “yes.” When I asked him to do it, he lay there expressionless, unable to move his paralyzed arm. I pointed out that he had not moved his arm. He disagreed! He was certain he had moved it. This felt very familiar, like what I had experienced with Henry and my patients who were like him. It was that experience that inspired me to propose to the field of psychiatry, in a paper published in 1991, that in patients who could not see they had schizophrenia we were seeing anosognosia, not denial.
There has been an explosion of research since our paper was published. Over the last thirty years, we have learned that indeed, when someone with a psychotic illness refuses treatment because they cannot understand they are ill, this is very often a result of anosognosia. We also know that anosognosia is present and long-term in about 50% of all patients. It tends to stay stable over time. So, when someone with anosognosia is treated and the hallucinations and delusions improve, do not assume that the lack of insight caused by the anosognosia will also improve. Usually, it does not.
Anosognosia predicts many negative outcomes like more hospitalizations, a poorer course of illness, increased aggression, and avoidance of treatment. Importantly, the research and our current authoritative diagnostic manual, the DSM-5-TR, agree that anosognosia is the top predictor of treatment refusal and dropping out of treatment.
Now that you know what I learned the hard way after years of arguing with my brother, my invitation to you is to keep coming back to learn ways of helping people with SMI who have anosognosia.
I also will be covering a wider range of topics that relate to TAC’s goals; goals that I wholeheartedly share. We believe in the right of people with severe mental illness to have access to treatment, and ideally for accessing that treatment to be a choice that they make themselves.
