You’ve heard the stories: A homeless man who has been diagnosed as schizophrenic panhandles for change, though few people stop because of his bizarre behavior. He refuses help from a governmental or charitable organization. His family finds him, but he won’t let them do anything to help.
Or this one: A bipolar woman has manic psychosis. She is convinced that her coworkers and people on the street are reading her mind and planting thoughts in her head. She refuses to take her medications because she thinks she doesn’t need them.
Or, perhaps worst of all, this one: A teenager who has been struggling with undiagnosed schizophrenia is convinced his mother is trying to kill him. He threatens her with a knife. The police are called and they shoot the boy.
Extreme stories? Yes. But these tragedies occur nearly every day. Most of them don’t make headlines, but they still cause suffering and even death for countless individuals and families across the US and around the world.
What these three people – and many others – are suffering from is “anosognosia.” It literally means “lack of insight,” but anosognosia is much more than that. It means that a person has so little insight that they don’t even realize that they are mentally ill. They don’t know that their behavior and thoughts are part of an illness.
Anosognosia is not the same thing as denial. Denial is when someone avoids something that is unpleasant or distressing to them. They do realize that there is something wrong – they just don’t want to deal with it. A person with anosognosia doesn’t even realize that there is anything wrong at all. They don’t realize they are mentally ill. Their brains don’t let them see that their thoughts and perceptions are not in line with reality. They don’t realize that their functioning is impaired. They think that they are perfectly normal. If anything, they think that the people around them are clueless and deluded.
Anosognosia is the number one reason that people with schizophrenia or bipolar disorder do not seek treatment or take their necessary medications. By some estimates, it occurs in up to 98% of people with schizophrenia and 40% of people with bipolar disorder. It’s also common in people with Alzheimer’s or dementia. People with anosognosia don’t get the help they need. Their condition doesn’t improve – in fact, it worsens.
So, what’s to be done? One solution may be a program that California Governor Gavin Newsom recently signed into law. It establishes CARE Courts – Community Assistance, Recovery, and Empowerment courts that make it easier for family members, first responders, outreach workers, and others to institute civil proceedings that make it possible to obtain up to two years of mental health services. The person being judged by the court will have access to a clinical team, lawyer, and “volunteer supporter.” Up to 12,000 of the most vulnerable people in California are expected to be helped by the CARE courts.
The program is controversial, however. Critics have said that the plan amounts essentially to forced treatment. Civil rights and disability groups are not in favor, though the program has been described as “voluntary.” In theory, a person would still be able to refuse treatment. And if the person has anosognosia, that might well be the case. The CARE courts plan is similar to another potential solution recommended by some clinicians – Assisted Outpatient Treatment (AOT). It’s not clear where the state would find people qualified and willing to monitor patients’ treatment and medication compliance. In Santa Clara County, AOT treatment consists of “intensive individual and group clinical services, peer support, intensive case management, housing assistance, 24/7 clinical crisis support, and medical evaluation.”
One of the most frustrating things about trying to get help for someone with anosognosia is the lack of appropriate treatment facilities, mental health workers, and other services. With many of the sickest patients being held in overcrowded emergency rooms or held for only 72 hours in a hospital ward, the situation is extremely complicated and not easy to solve. But if AOT or CARE courts keep mentally ill people out of jails and prisons, which typically provide either inadequate or no psychiatric treatment, that’s a good thing.
Most people with psychiatric disorders may hear about anosognosia and think, “Oh, that could never happen to me.” But the reality is that a person with anosognosia doesn’t realize when it is happening to them. It’s not an easy problem to solve, but educating people about anosognosia and developing plans for dealing with it are vital. It’s the most vulnerable members of society – and their families and friends – who are most affected by it. They need our help, even if they don’t realize it – or particularly when they don’t realize it.
This post first appeared on The Mighty.