By Katrina Gay, NAMI Director of Communications
Xavier Amador, Ph.D., author of the acclaimed I’m Not Sick, I Don’t Need Help and founder of the internationally acclaimed LEAP® Institute, will be giving a special presentation from 7:30-9:30 p.m. on June 28 at the NAMI National Convention, to be held at the Grand Hyatt San Antonio.
LEAP (“Listen-Empathize-Agree-Partner®”) shows individuals how to quickly gain the trust of someone and improve their relationships and was developed to teach families, health professionals and first-responders how to better help people with mental illness.
In previous years, Dr. Amador’s convention sessions have been standing room only and one of the most wildly popular among the dozens of workshops and sessions offered.
NAMI recently spoke with Dr. Amador about his work and his upcoming special presentation at the NAMI National Convention. Following is a transcript of the engaging discussion.* Click here to see and hear our conversation online.
Anosognosia is the inability to perceive that one is ill due to impairment to the brain’s ability to see oneself accurately. It has been identified as the single biggest reason why more than 50 percent of people living with schizophrenia and bipolar disorder refuse treatment or often stop after days or months have gone by. How is recognizing and understanding Anosognosia important for families and individuals affected by mental illness, and why is this important in LEAP training?
Amador: LEAP training is very much about anosognosia and what we can do about it. I think that is the reason there has been so much excitement about my previous NAMI presentations. The scientific information and practical lessons learned are so vital to families. I am a family member, I had a brother with schizophrenia, and I am passionately committed to helping others have better relationships with their loved ones. My ignorance about this symptom nearly destroyed my relationship with my brother and drove him further, not closer, to treatment.
Anosognosia in persons with serious mental illness has been in the scientific literature for twenty years this month! And there has been scientific consensus about its existence and impact on treatment adherence and relationships, since 1999. If someone is saying, “I’m not sick…,” for months, years or decades, and yet they have a diagnosis of mental illness with psychosis, it is important for families and loved ones to recognize that they are not being stubborn, but instead suffering from a symptom of the illness.
Why is understanding this condition so important for individuals and families in the recovery process?
I can start by saying it was vitally important to me as a family member. When he had his first psychotic episode I spent a week arguing with my brother Henry trying to convince him he needed help. When I am teaching LEAP, I always ask, “How do you think I got my brother to the hospital?” It’s like the people in the audience have ESP because someone always guesses, “you called the police”. And that is what happened. Calling the police on my brother, who was my best friend, was the hardest thing I had ever done, and it was worse for him. When I learned about anosognosia, it relieved me of my guilt and also my anger. I thought my brother was being stubborn and immature. He wasn’t. He was following his own common sense, which told him I was the one with the problem, not him.
So learning about anosognosia was very important. For decades we taught family members to not take it personally if their loved one [with mental illness] had a delusion about them. We would say, “It is not in their control. Don’t think they are being difficult if they refuse…treatment, housing, whatever.”
Now we know more. We actually see anosognosia in about half of people [with psychotic disorders like schizophrenia, schizoaffective and bipolar disorders]. We would not think to tell people to just stop hallucinating, but we used to do this when trying to break through their denial. We would argue politely or harshly, that the evidence was they were ill and needed treatment. But we never win on the strength of our argument. We win on the strength of our relationship.
That is what LEAP is about, looking for ways to partner and agree. LEAP grew out of my work with NAMI families. It is a child of the NAMI community and the shared experience. I am proud and humbled by that.
What do families and friends need to know about anosognosia?
There is often a lot of anger in families. I’ve been doing [this kind of work] for over 30 years, since 1982.
The first thing families need to address is their education about the condition, to learn about the illness. For example, they should look at the DSM, turn to page 304 and read the section on associated features of schizophrenia. Learn about it. It predicts this person not taking meds, relapse and have negative outcomes. Getting educated is the first thing.
Second, it is hard to understand if you have not experienced it. There are several role plays on the website. There are role plays on video where someone can have their reality judged a delusion. Get educated, and then educate your healthcare professionals as many don’t know what this is really like and also try to have a little experience yourself on what it is like. It will help you to have a small taste of what it is like to have your life turned upside down.
What do individuals who live with mental illness need to know about anosognosia?
[Having a mental illness] can be lonely and isolating. Individuals are often cut off. The answer to this is ancient—it is relationships.
Having relationships, one or more, with a person or people that you trust, that respect your point of view, is key to preventing relapses and engaging in successful intervention and treatment. I have countless stories of people doing well in recovery. When I ask them what the most important factor is on why they are engaged in treatment [and recovery], they tell me that was not the value of the medication or treatment itself, but the relationship. A relationship with someone, perhaps a friend, where you can pick up the phone or text someone and be honest. Share your experience. Have conversations about why you may be questioning your treatment plan or think you may be starting to relapse.
It is important that if you are doing well, you don’t isolate. Make sure you have at least one friend. It can be but doesn’t have to be a mental health care professional but should be someone you can trust and talk to about reluctance, anxiety, depression—about anything. Stay connected. That is the best inoculation [against a relapse].
Through you work with your LEAP Institute, you talk about “core lessons that create change” and how these can be “delivered more quickly and effectively.” What are these core lessons and how has your work, through LEAP, evolved?
It started out with a little book, [I’m Not Sick. I Don’t Need Help]. Before the book, through my work with Dr. Arron Beck, we discovered that anyone can use the main tools offered through LEAP.
LEAP involves seven comm tools with one fundamental value—to create a relationship where there is mutual trust and respect. When we say ‘listen’, we mean listen in the LEAP manner, a pure reflective listening. Don’t try to convince, just listen reflectively. When listening to someone with schizophrenia, for example you might say something like, “Let me see if I understand you. You are not sick; you would like help with this implant that is in your head,” for example. Some will think you are feeding into the delusion and making it worse. The research says that this is actually not true. You have to listen respectfully.
Another tool is to convey understanding, or empathize. “It must be hard,” for example. Meet that person and find a common ground. There are more tools that have been developed. These are on the LEAP website, but I will be discussing these in more detail in the NAMI Convention session. This will involve introducing tools on learning how to get to the level of trust you need to get someone engaged.
What are some do’s and don’ts for people when it comes to dealing with anosognosia?
Here are three for each.
First, don’t tell a person they are mentally ill. If you’ve already told them two to five times over a year, and it has not changed their point of view, then don’t keep telling them. Second, don’t tell them they need treatment or meds. And finally, don’t give an opinion unless asked. If you are balking at this advice ask yourself: “Has telling him/her ever resulted in his acknowledging the illness and need for treatment?”
Additionally, the first do is to promise the person that you won’t ever tell them your opinion about whether they have mental illness unless they ask. You can ask permission to tell them, you can give your opinion but its all in HOW you give your opinion. Second, do promise not to talk about treatment or to persuade them to be in treatment. Keep your promise. By doing so, you recognize that the person is likely being pushed around a lot. It is common for anosognosia to leaves the person feeling pushed around and disempowered. You can empower them and feel connectivity and strength of relationship. Your opinion will get asked. If you need to, delay giving opinion, don’t rush it. And finally, do promise that you want your relationship to be good. Don’t rush it.
How does this impact the ability for advocates to build partnerships and enhance advocacy efforts?
The Leap Institute has grown. We are preparing to move into the Midwest and are currently on the east and west coasts [of the U.S.] We currently have a presence in Germany, New Zealand and in the Netherlands as well. We have faculty spread out who are answering requests for training. Since we started in 1999, we have grown. Actually, this all started at a session at NAMI Convention when, after a presentation, I was asked to write a book for the layperson. That book, I’m Not Sick. I Don’t Need Help is on its fifth edition and has been translated into 10 languages. It is really about universal and simple truths: Listen instead of argue, understand that anosognosia leaves people feeling isolated. Build a bridge. Stop, listen and build a relationship. There are tools that can help you give your opinion in a way [your loved one] can hear.
What have you learned in your work with LEAP that has surprised you the most?
That I can be up in front of a group of people and cry. I still often feel the connection to the pain that people experience. It surprises me every time. I speak a lot, and when I hear the stories, and I hear them all over the world, it is not so much that I am upset. Rather it is a feeling of connection, of love, really. Through the telling of our stories, we can so relate to the common frustrations and pain. I am so impressed by the desire [of families and individuals] to change themselves so they can help their loved ones.
I know. I was struggling with same things. I struggled with my brother and with patients. One thing: We are not alone. I ask questions at every training around the world, in Dubai, Taiwan, Canada, throughout Europe, California or in Tennessee, and the hands all go up to the same questions. For example, when I ask, “After the first hospitalization, where did you find your loved one’s meds?” I always hear “In the trash?” And then we discuss the common feeling of anger, fear and hopelessness.
This is a universal experience,[our pain], and we are stronger when we share it. And we are stronger still when we learn there is good reason to have hope!
I am a big believer in stories. [When we tell them,] we access our humanness and they connect us to each other.
So now, we are full circle back to the NAMI Convention. How do we help someone? First understand it is not their fault. Our task is not to teach them something hard to learn, our task is to connect to them. Use our own humanity, humility and powerlessness and share your story with each other. Listen, reflect and be their trusted friend. Through telling the stories, connect. And then, we are in a position to help.
Give an opinion that is highly respectful of that person’s power. We forget that people with mental illness are in charge, we are not. They have the authority to involve themselves in treatment or to deny it. Forced treatment does not last a lifetime. It can be lifesaving interventions, but this is just an intervention. Build the relationship. Individuals can inoculate themselves against another relapse by sharing, and honoring.
I will share my personal experience. In the last conversation I had with my brother who lived with schizophrenia, Henry, I asked if he had developed insight, “Do you have schizophrenia? What do you really think today? Why are you going for treatment?”
He said, “I do it because you would worry if I didn’t.” Mom and Pops, Betty and James, ran the board and care where he chose to live. They respected him, loved him, cared for him. That is most important. He took the medication [to treat his schizophrenia] not because of any knowledge of his illness, but because of these three relationships. We cared, and so he cared.
Is there anything else you would like to say before we end our conversation?
If you are coming to my presentation at the NAMI Convention, start right now. Start by telling your loved one, “I’ve been arguing with you a lot about whether you are mentally ill or not, and I want to stop arguing.” See what happens.
And finally, if you do some of these things and they are helping, don’t feel guilty about the past. The gap between research that is stranded in journals and practice is very large. The fact you may not have known [how to have a relationship with your loved one who has a mental illness] is not your fault. It is the nature of how slowly science trickles down.
For more on the NAMI National Convention, including registration information, click here. Additional information about Dr. Amador and LEAP is available on the LEAP website, including access to free informational videos.
* This transcript has been edited for clarity.
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