What does anosognosia mean and where does it come from?
Anosognosia is a medical term derived from a combination of Greek words – a (without), nosos (disease) and gnosis (knowledge). The literal translation is “lack of knowledge of the disease," although Anosognosia is often referred to as “lack of insight”.
Anosognosia was originally used by neurologists. The neurologists were treating patients with brain damage and noticed a puzzling symptom. Some of the patients were unable to perceive their injuries. For example, someone with the condition may have a paralyzed leg yet continue to believe that their leg is normal and not paralyzed. When pressed about why they can’t stand, move or lift their leg, they respond in one of two ways. Some may insist that they can move their leg, but don’t want to at the moment. While others say they have moved their legs and become frustrated with people who tell them they haven’t.
Neurologists also use the term Anosognosia for changes in Alzheimer’s disease when a person may be unaware that they are losing abilities and memories.
Anosognosia and schizophrenia
Anosognosia is a common problem in schizophrenia. Many people diagnosed with schizophrenia reject the diagnosis intensely and persistently even when there appears to be obvious evidence of the symptoms. Dr. Xavier Amador, psychologist and author of the book I’m Not Sick, I Don’t Need Help, has led the way in building recognition and awareness of anosognosia in schizophrenia.
Dr. Amador has lobbied successfully for its inclusion in notes on schizophrenia and schizoaffective disorder diagnoses in the Diagnostic and Statistical Manual (DSM). The DSM is the gold standard for diagnostic information in the U.S. In the DSM, “low” or “absent insight” can describe symptoms in many other diagnoses as well, including OCD, body dysmorphia, and bipolar, among others. Dr. Amador’s research estimates that 50% of people with a schizophrenia1 diagnosis have persistent anosognosia that does not go away with medication.
Dr. Amador knows personally about the struggles that families go through when a loved one has anosognosia. To help families, he has developed the LEAP method (which stands for listen, empathize, agree, and partner) for communicating with people experiencing anosognosia. His book and promotion of “anosognosia” awareness have helped families learn better ways to help a loved one with schizophrenia, but the term is not without controversy.
Controversy over the application of anosognosia in schizophrenia
While there is agreement among many experts that anosognosia is an appropriate term that applies to schizophrenia and psychosis – there is still considerable controversy over the use of this term among psychiatrists, mental health advocates, and people with schizophrenia (or related conditions). Many psychiatrists and psychologists with expertise in schizophrenia prefer to discuss “lack of insight” which can be on a spectrum and is also expected to change over time.
A central problem in the controversy is that claiming someone has anosognosia can invalidate their own lived experience and be disempowering. Disempowering a person living with extreme experiences, like psychosis, may actively work against helping them to develop insight, as described in the research below.
There is now considerable evidence that it is possible for insight (and therefore anosognosia) to change over time. Work from Dr. Turkington in the UK shows that when surveyed overtime, a person with schizophrenia who typically denies the condition and any symptoms will have variability in their insight over the course of weeks or months.
As a family, you may see glimpses of insight change over time in your loved one. Insight is very broad. It involves making sense of the world and its problems. Research2 shows that how firmly a person holds their beliefs depends on the topic, situation, time, and other factors. Importantly, it has long been accepted in clinical research3 that insight or anosognosia does not always have to change for a person to start a recovery path (as discussed below).
There are also specific therapies including cognitive behavioral therapy for psychosis (CBTp) that work to improve insight over time and help someone to connect their thoughts and behaviors to their goals and values. For people that hear voices, there is now evidence4 that specific treatment to change the relationship to those voices can help them manage the voices and gain insight. In Indiana, Dr. Paul Lysaker and colleagues have also developed a manualized treatment program called Metacognitive Reflection and Insight Therapy (MERIT) to address insight.
The evidence-based psychotherapy approaches all have a basic respect for the person’s beliefs, even if they are odd, harmful or objectively false. This can be confusing for families. These treatments don’t aim to persuade a person to accept a diagnosis or medications. They help the person make meaning out of a confusing and conflicting world and find new, more adaptive ways to think about and respond to challenges. Just as recovery takes many paths, changes in insight or anosognosia are often gradual and unpredictable.
As a neuroscientist, I know that our scientific understanding of the brain and neurological symptoms like anosognosia have changed dramatically over the last few decades. Rather than seeing the adult brain as a fixed machine that is put in motion and will become broken if a part is disrupted or removed – we now know that the brain has the ability to change, adapt, and heal in dramatic ways long into adulthood. Most neurological deficits can and do change overtime, especially with intentional therapeutic processes such as occupational, cognitive, or somatic therapies.
A key, and dangerous, issue in the controversy over the existence of anosognosia in schizophrenia is that it has been inappropriately used to justify the use of physical force, restraints5 and use of forced medication or sedation. These tactics can be traumatizing to anyone, regardless of the presence or absence of anosognosia. While there are cases of extreme safety risk when these tactics can’t be avoided, most of the time they are simply less effective and more harmful than other means of de-escalation and intervention. Rather than resulting in therapeutic benefits, research6 shows these tactics can instead cause long term damage and make recovery less likely.
The use of undue force and other potentially traumatic experiences during treatment are part of the reason schizophrenia is such a stigmatized and difficult diagnosis to accept. Unfortunately, there is often a lack of training7 on how to communicate with someone experiencing anosognosia for first responders and mental health professionals. As a family member, researching the best available support for crisis intervention and treatment teams with specific expertise in psychosis is an important part of keeping your loved one safe, regardless of their awareness.
What does anosognosia feel like?
Clearly, it is difficult to know firsthand what it is like to experience anosognosia. It is natural to assume that holding beliefs that conflict with everyone around you would be distressing, confusing, and isolating. We can learn a lot from the people whose insight changed over time and can reflect on times when they denied or disagreed with their diagnosis.
Professor Elyn Saks shared her personal story in the American Journal of Psychiatry8. She describes herself “as a person with schizophrenia who denied for decades that she was ill, even in the face of many, many episodes of clear psychosis.” In the article, she explains how her reasoning changed over time with new experiences. Professor Saks emphasizes the importance of being able to talk with others about her thought process for rejecting the diagnosis. For her, the denial of her schizophrenia diagnosis felt very logical – just as her acceptance of the diagnosis felt logical to her later in life.
How do I deal with anosognosia as a family member?
At first, it can be a relief to learn the term ‘anosognosia’ and finally be able to put a name to what otherwise feels like dealing with a brick wall. It’s natural for family members to start out assuming that symptoms of anosognosia are instead very hurtful behaviors such as: intentional lies, manipulation tactics, means of escaping responsibility, gaslighting tactics, or forms of denial. When you start to recognize anosognosia as an unintentional consequence of the condition, it can help you shift your perspective and focus on helping your loved one. Your own mental health will improve when you can make sense of something that has felt meaningless, bewildering, or hurtful.
Still, as a family member, the recognition of anosognosia is not enough to help you with the day to day challenges. It is painful when you cannot share reality with someone that you care about. Parents will often feel a sense of ambiguous grief – yearning for their adult child to recognize what is happening and take charge of it; feeling deep hopelessness about their child’s ability to realize their full potential. Others may fall into a sense of learned helplessness, feeling stuck at the point of ‘recognizing there is a problem’ and start to disconnect or lose hope for recovery. Delusions also commonly center on family members and they can be devastating to be the subject of.
Dealing with the impact of anosognosia on a family should not be taken lightly. Family members with loved ones affected by anosognosia need and deserve their own support to cope with the psychological distress they experience. Family support groups, family partners in early psychosis programs, peer mentors and in some cases therapy for the family members are all options to help with the challenges of this day to day stress.
Rather than focus on fixing anosognosia or expecting it to go away, it is important for families to lean into taking care of their own stress and learn ways to stay connected with their loved one in positive ways. Matthew Montañez, co-founder of Akin Mental Health, shares a personal story of how his relationship with his brother shifted when he learned to stop fighting against lack of insight and see his brother's actions differently.
The family program available through Akin Mental Health has been specifically designed to help families affected by anosognosia by providing both tools to help (like communication skill building) and tools to heal (through mutual support and connection).
Can someone with anosognosia accept treatment?
It is possible for someone to accept treatment with anosognosia. The path to get there, the type of treatment accepted and the reasoning for accepting treatment are hard to predict and are unique to each person.
Professor Saks’ explains this well saying:
“Many people deny that they are mentally ill and yet accept treatment. They may reason that even though they are not ill, the medication helps with certain things they are experiencing, such as sleeplessness. So it may be that all we want or need patients to accept is that they are suffering things that are uncomfortable and that medication could help. Making them admit to the mental illness may be forcing an unnecessary humiliation on them.”
As families, we may need to let go of our reality – the reality that our loved one has schizophrenia – in order to meet our loved one in their reality – that they do not have schizophrenia. When we meet on a shared goal there may be an opportunity to partner and make progress.
The advice that someone must start by “admitting they have a problem” and no progress can be made without that is generally harmful and unproductive – particularly in the context of anosognosia. Worse still, is expecting someone with anosognosia will start to accept treatment when they “hit rock bottom”. These are not reasonable expectations for a symptom that changes your ability to learn from your own experiences and have self-awareness.
A nurse who works with patients with brain injuries once told me a story of partnering with someone with a broken leg and anosognosia resulting from the brain injury. The man was in the hospital in a wheelchair and began to stand up – not realizing his leg was broken and would be further injured if he attempted to walk. The staff close to him began to get worried and hurriedly instructed him to “sit down” asserting to him “your leg is broken, you have to sit down.” The man was becoming agitated about being told what to do and an argument was escalating where the man tried to push the staff away. The nurse walked over and asked the man “What do you need?”, when he replied that he needed to use the restroom she offered to help by asking if she could take him in the wheelchair. At that point, he sat down and what could have been a dangerous incident subsided.
The lesson here is to ask “What do you need?” and “What matters most to you?”. Through these questions you may find ways to work together even when you find yourself in different worlds.