By Bob Nassauer
This article first appeared in July 2021 on HIPAAforCaregivers.com.
Years ago, when my loved one’s psychiatrist told me that one of the symptoms of schizophrenia is that people don’t know they are ill – “anosognosia” – it blew my mind. Since then, I have learned quite a lot about anosognosia. And, I have learned that many people attending the NAMI National signature program, Family-to-Family, are not familiar with the term. Unfortunately for many, anosognosia is one of the greatest barriers preventing someone who is in psychosis from voluntarily seeking treatment. Through the years of trying to help my loved one gain clarity about being ill and needing help, it sometimes felt like reaching into a cloud.
What is anosognosia?
Anosognosia is a lack of insight or lack of awareness – “to not know a disease.” It is often one of the symptoms associated with psychosis. Therefore, it is most commonly associated with schizophrenia. However, it can also be present with any illness that involves psychotic features, such as depression and bipolar disorder.
Most often, people experiencing anosognosia will not believe they need help, so it’s difficult to successfully encourage them to voluntarily get treatment. Anosognosia is not denial. It’s not a choice. It’s a biological, brain-based symptom that the person cannot control. As strange as it may sound, it is logical that someone who does not think that they are ill will not want to get help. It is like having a blind spot. When caregivers encounter it with their loved one, it makes for a very challenging situation.
How to help someone experiencing anosognosia
One helpful way to help your loved one who is experiencing anosognosia is to strive to build trust in your relationship. This is no easy task and can take a lot of time. My wife and oldest daughter have been especially good at building trust with our loved one. And, this has been helpful to me as well. In fact, there are times when our loved one is experiencing a delusion or hearing voices, and we can say, “We think this is a delusion,” Most often (thankfully), our loved one will say, “Ok.”
I have read that, sometimes, people who are unaware that they are ill can be convinced to go to a treatment professional, or to psychiatric emergency treatment. This can happen when someone they trust is telling them that they need to go.
The book I Am Not Sick I Don’t Need Help! by psychologist Xavier Amador, is a helpful resource if your loved one experiences anosognosia. Dr. Amador’s LEAP (Listen-Empathize-Agree-Partner) Institute offers low and/or no cost training on a method for building trust with one’s loved one and encouraging them to seek help.
From their website:
LEAP helps you create relationships that lead to treatment, even when the person does not believe s/he is ill.
LEAP is an evidence-based communication program that turns adversaries into partners.
Approaches to get help for your loved one who needs treatment
If, despite all your efforts, your loved one continues to refuse to get treatment, there may be other options. This is true when they are a danger to themself or others, or they cannot care for themself in the community. In these instances, you will need to consider the following options to “benevolently coerce” help for your loved one.
Work with your local community mental health department. Provide them a brief fact-based description of how your loved one is a danger to self or others. Then, request a “wellness check.” In many communities, a crisis team will come to your location and assess the situation. After that, they will do what is necessary to assure your loved one’s safety. This may include taking them to the psychiatric emergency department for a 72-hour hold and psychiatric evaluation.
Contact your local courthouse, and tell them you want to file a petition on behalf of your loved one. This is usually a one- or two-page form. You don’t want to go into a lot of detail. Instead, provide specific facts on how your loved one is in danger to self or others or can’t care for themself in the community. If at all possible, have a psychiatrist complete a petition on behalf of your loved one. Or, at least, have them say in writing they believe your loved one is in danger to themself or others and/or cannot care for themself. The first time I petitioned my loved one for treatment was one of the most difficult things I ever did. Over time, the process got easier because I understood it better and trusted that it would help my loved one.
In some cases, the court will issue a pick-up order. When that happens, the police and a member of the community mental health crisis responder team (hopefully) will come to your location. See the next paragraph for how to handle this. Years ago, when my loved one was on the verge of a crisis, I contacted our local community mental health and the local police department to let them know that we were concerned. I think this advance notice helped a lot because, when it came time for us to call for crisis help, things went fairly smoothly.
Calling the police
In a more severe crisis situation, you will need to call the police. If you do this, be sure to tell the police three things. First, make sure they know that this is a psychiatric situation. Second, state that your loved one is under a treatment provider’s care (if appropriate). Third, tell them that there are no weapons or access to weapons (if appropriate). It will be important to continue to repeat this key information to any officers on the scene. Please keep in mind that, most likely, police are not familiar with the term “anosognosia.” But, they are likely familiar with people being in denial that they are ill.
Possible Outcomes In the Hospital’s Emergency Department
The first time we brought our loved one to the child and adolescent psychiatric emergency department, we naively assumed that our loved one would be cured. It is important to keep in mind that psychiatric emergency departments are all about short stay stabilization. Here is a summary of what might happen if your loved one is brought to the psychiatric emergency department:
This first phase can take a long time. Right away, the medical staff look at many things that could be contributing to the crisis. For instance, the presence of other health factors such as drugs, alcohol, physical abuse and other trauma. In addition, the staff analyzes your loved one’s medical history and identifies insurance coverage authorization. Plus, they determine the availability of an in-patient hospital bed in the event that it is decided that this is medically necessary. Sometimes the only available in-patient bed is geographically a long way away. All of this activity sometimes takes many calls on the part of the staff, especially the social workers.
The medical staff may want to talk with family members. Therefore, it is important to be ready with your crisis plan information such as history, recent events, medications, and contact information of your loved one’s current treatment providers. If the staff does not seek your input, it will be important to advocate for it. In some cases, it is a good idea to have it in writing and take measures to ensure that this goes in your loved one’s medical record.
Determination of Next Steps
The medical staff, under the supervision of the attending psychiatrist, decides what happens next. For example, they may discharge your loved one with no requirements – only suggestions and contact information for potential appointments. Or, your loved one might be admitted for a hospital stay of three days or perhaps longer. Unfortunately, the number of available in-patient psychiatric beds is not adequate in most communities to meet the demand. So, in essence, you are fighting on behalf of your loved one for a bed.
If your loved one does not agree voluntarily to being admitted to an in-patient unit, a Clinical Certificate is signed. When that happens, your loved one is not released pending a court hearing. That hearing must be held within 7 days — sometimes via teleconference from the hospital.
The legal process will be explained to your loved one. Then, they will be given an opportunity to voluntarily accept the proposed plan of treatment. That plan will allow him/her to request a hearing at any time. If your loved one insists on a hearing, the process includes a judge, a psychiatrist and prosecuting and defense attorneys. In almost all cases, it is best if your loved one voluntarily accepts the treatment recommendations. It is advisable to do your best to leverage the trust that you have with your loved one. According to the Treatment Advocacy Center (see below) approximately 80 percent of the time you will not become “the enemy.” In my experience, the respectful and thorough due-process “ritual” of the court hearing helped our loved one accept the diagnosis and treatment plan.
Support for caregivers coping with anosognosia
As you can imagine, all of this can be complicated. In addition, it is especially difficult when you are under the stress of determining how to best help your loved one. The Treatment Advocacy Center is a good resource. From their website:
The Treatment Advocacy Center is a national nonprofit organization dedicated to eliminating barriers to the timely and effective treatment of severe mental illness. The organization promotes laws, policies and practices for the delivery of psychiatric care and supports the development of innovative treatments for and research into the causes of severe and persistent psychiatric illnesses, such as schizophrenia and bipolar disorder.
Years ago, my wife and I were on the phone with the head lawyer for the Treatment Advocacy Center, asking for help as our loved one was in a local jail. We were advocating for her to be transferred to the hospital. The lawyer said to us, “This is going to be a full time job.” It was. But, over time, we learned the rules of the road. We sought help from many different sources, such as NAMI. And, eventually, navigating the system of care became a bit easier.
As a grandmother, who was living in support of her grandson, wisely said during a Family-to-Family class, “I knew he was suffering, so I got him some help.”
Bob and his family live in support of their 36-year old daughter who lives with a diagnosis of schizophrenia. He is a retired management consultant and former board member of the National Alliance on Mental Illness Washtenaw County. Bob continues as an active volunteer with the organization working on several projects. He also serves as a state trainer for the NAMI national signature programs Family-to-Family and Ending the Silence/Parents and Teachers as Allies.