Laura Howe 0:01
Hey there, Laura here for the next two weeks, the podcast team is going to be enjoying a spring break. But don't worry, there will still be new episodes. Each week, we're actually jumping back to share a few of the most viewed sessions from the church mental health summits in the past. And I can't wait to share some of these fantastic talks and resources with you. And I am so excited to share that the 2023 summit is now open for registration. We have over 50 speakers from around the world that are going to come together to equip the local church to support mental health in their church and community to check out the speakers and to register for free. Go to church mentalhealthsummit.com.
Laura Howe 0:47
From Hope Made Strong this is The Care Ministry Podcast a show about equipping ministry leaders and transforming communities through care. supporting those in your church and community not only changes individuals lives, but it grows and strengthens the church. But we want to do that without burning out so listen in as we learn about tools, strategies and resources that will equip your team and strengthen hope.
Laura Howe 1:18
I'm Laura and welcome to The Care Ministry Podcast. The show today is a flashback to one of the top-viewed sessions from last year's church mental health summit with Dr. Xavier Amador. As a caregiver, there is a fine line between supporting someone and project managing someone and a line that I learned about the hard way. Despite people coming to you asking for help and and asking for your opinion on what they should do or, or what they should say or what direction they should go in your life. It's actually not appropriate or even helpful for you to give your opinion or to fix their problem. This is so hard. This is such a tough spot to be put in especially if someone is going in a direction that will harm them or make their situation so much worse. It's like watching a train wreck in slow motion. But we are not meant to rescue people. We're not meant to be saviors of people, only supporters and if we jump in and fix things for people, there's not going to be any lasting change. Well there is is just that the change isn't personal growth or independence. It's more like codependency lowered self-esteem and a reliance on others. And so as supporters we can find ourselves frustrated, watching on the sidelines F's people make poor decisions. Dr. Xavier is no stranger to this feeling. You see Dr. Xavier became the primary support person for his brother who struggled with mental health. He experienced psychotic features like paranoid thoughts, thought rumination, and delusions, but continue to believe his brother continued to believe that he was not sick and he didn't need help. So after years of supporting his brother, Dr. Xavier developed a support model that helps navigate caregivers through those difficult conversations and assist them to support their loved ones to accept treatment and support despite them not feeling likely they like they need it. In addition, Dr. Xavier is an internationally renowned clinical psychologist, author and leader in his field. Dr. Xavier is a professor of psychology at the State University of New York. He was Professor of Psychology and clinical psychology at Columbia University, and is the director of Psychology at the New York State psychiatric institute. His expertise has been called upon by government, industry leaders and in the media, but I'm sure now I am sure of it that his top point on his resume was that he was a speaker at the 2022 Church Mental Health summit I'm sure of it. But seriously Dr. Xavier's model to help caregivers support those who don't want care is so simple, and yet is incredibly helpful. And I know you're really going to enjoy it. So here is Dr. Xavier from the 2022 Church mental health summit.
Dr. Xavier 4:18
Very honored to have been asked to present to The Church Mental Health Summit. As you know, the title of my talk is I'm not sick, I don't need help. I'm going to tell you where I first heard that phrase. And really my focus is on how do we help people with mental illness who do not understand they're mentally ill. We're like to start is where I started. This is a picture of my brother Henry Amador. He's looking in the window I'mthe little guy driving the car. And we when this picture was taken, we're Cuban refugees. We had escaped Cuba, our father had been killed in the revolution. Our mother, recently widowed was raising four children on her own. And Henry was was much more than an older brother, he was my best friend. He was like a father to me. And that relationship continued for many, many, many years. Fast forward in your mind's eye to 20 years later, roughly 20 years later, a little less than that. And I got a call from Henry. I was in New York, studying psychology and he was living at home with my mother and my wonderful stepfather, our wonderful stepfather. My mom had remarried. And he called me in New York, from Tucson, Arizona and said, you know, Xavi, that was my nickname for Xavier. Come home quick. I killed dad. And then he hung up.
Dr. Xavier 5:43
I was shocked by what he said. I didn't for a moment think he had killed our stepfather. He had been odd and sort of
Dr. Xavier 5:52
isolating himself and losing friends dropping out of college for years. But what I came to realize when I got him on the phone, again, is that he was now having delusions and hearing voices. He believed that playing the guitar had led to his killing our father. That's somehow the music if you got gotten transmitted into our father's head and then killed him, very bizarre delusions. I flew to Arizona, to be with the family and really tried to talk my brother into going to the hospital, it didn't work. I kept telling him he's ill. He kept saying, as I promised, a moment ago, I'd tell you where I first heard this, I'm not sick, I don't need help. He kept saying that. We thought about it for a week I eventually. Well, it was first a gentle disagreement. I eventually got him into the hospital by by calling the police. I know many of you have had experiences like this. It's really hard to call the police on a mentally ill loved one. He got better in the hospital, the hallucinations went away the delusions remitted. And we came home from the hospital. And that first night, what do you think I found his bottle of anti psychotic medication, I bet you know, in the garbage can. So I went and in, you know, softly with kindness confronted him. And that led to a seven-year disagreement and bottling battle and confrontation, where our relationship looks like this very different than the first picture I showed you, Henry running away from me running away from mental health care professionals, homeless for a short time, in and out of the hospital four times a year, our relationship really, really deteriorated. And he was really deteriorating. At that same time, I began my graduate studies in psychology and developed the LEAP approach, which I'm going to tell you about in just a moment. And through that approach, Henry accepted medication accepted treatments, and for the rest of his life, stayed on a long acting injectable, anti psychotic medication, had volunteer jobs, two of them, had a girlfriend had a rich and meaningful recovery, and our relationship was healed as well. This is a picture of Henry on the right. And that's me on the left. Tragically, Henry died being a good Samaritan in a car accident, I don't have time to go into the detail, but he was helping someone out when somebody else lost control of their car. But for 18 years, he was in recovery and treatment, he never understood he had a mental illness. In his case, it was schizophrenia. Still, he was in treatment. And that's really what the LEAP approach is about. It's not about convincing, convincing someone they're mentally ill. It's about building a relationship with them that leads to treatment. So here's a question for you. Would you agree that denial of illness impairs common sense judgment, about the need for treatment? And services? Would you agree with that? Raise your hand and look around the room? I bet most of you raise your hand. I don't agree. If I take the perspective of Henry Amador, and roughly 7 million Americans who have mental illness and do not understand they have an illness, it's common sense to refuse treatment. It makes sense. Let me ask you, let me ask you a different question. How many of you would inject yourselves with insulin knowing for sure you do not have diabetes? Raise your hand. Now look around the room, and there's nobody raising their hands? Of course, it's common sense to refuse treatment. But are we dealing with denial? In fact, the research shows that we're dealing with a symptom called anosognosia and if you want to pronounce it, here's what it looks like. Here's what it sounds like and nose, egg, nausea, and a sick nausea. This is a neurological symptom that we've seen in neurology patients for many, many years. Let me tell you about one neurology patient in a study that that we conducted at Columbia University. We asked him to draw this clock. And then he drew this. I asked him how he thought he did and he said fine, just fine. So he had anosognosia. For this, it's called a construction apraxia in ability to draw a central figure.
Dr. Xavier 10:00
I started pointing out the twelves, how many twelves are they in, he's counting them with me. And he becomes he doesn't gain insight that he's got a problem. He gets flustered, upset, paranoid, pushes the paper away, and says, You've switched switch the drawing on me, this is not my drawing. So, my teaching him, my showing him that he had a problem did not result in his understanding that he had a problem. Instead, it resulted in anger and in frankly, paranoia, that I had done something to trick him. So what about people with schizophrenia, schizoaffective disorder, delusional disorder and bipolar disorder. Evidence from brain imaging studies shows that people with schizophrenia have significant differences, if they're aware versus unaware of having a mental illness. The variety of anatomical structures have been found to be different between patients who know they're ill, and those who do not. They all lie in the frontal lobes. So patients who say I'm not sick, I don't need help for months and years and even decades, have different looking frontal lobes. There's other studies I'm not going to be telling you about in the interest of time, three of these studies involved people who had never been on antipsychotic medication. So these brain differences are not caused by any, you know, treatment, either a primary to the disorder. So to summarize, if you don't understand you're ill for months, days, months, weeks, years, decades, your brain is looking different, and it's actually functioning different. So our diagnostic manual for psychic psychiatric disorders, actually has been talking about this for 22 years. The majority of individuals with schizophrenia have poor insight regarding their illness. And evidence suggests that poor insight is a manifestation of the illness, not a coping strategy. In other words, it's a symptom, not denial. It may be comparable to lack of awareness of neurological deficits that we see in stroke. And that was the picture I showed you a moment ago. termed anosognosia.
Dr. Xavier 12:02
This symptom predisposes the individual to non-compliance with treatment to refusing medication, and all kinds of other negative outcomes like higher relapse rates, more involuntary hospital admissions, poor psychosocial functioning, in generally a poor course of illness. Well, that was back in the year 2000. What about today? What about in 2022?
Dr. Xavier 12:24
Actually, before I talk about 2022, let me emphasize something that I kind of jumped over. I was the co-chair of this revision in the you know, this is the authoritative manual on psychiatric diagnosis, the DSM, and together with my co-chair, Michael Flom.
Dr. Xavier 12:40
This is a unique book and that we unique DSM manual in that we impaneled, a group of experts from the US and overseas to look at the research to really pull together all the research to make what we described in the manual, peer-reviewed, almost like a journal. So you know, from that peer review process, and majority of people with schizophrenia don't understand the habit, it's a symptom. These are the headlines, and it looks like anosognosia. So what is our current DSM? Again, this is the authoritative manual on psychiatric diagnosis. The schizophrenia and other psychotic disorders section says this unawareness, of being ill is typically a symptom rather than a coping strategy. It is comparable to the lack of awareness of neurological deficits following different kinds of brain damaged, damage term termed what? Maybe we can set out that on kind of 3123 anosognosia. It's important to be able to describe this symptom. If you come away from my talk, with some newfound knowledge that that's this problem. When someone says I'm not sick, I don't need help. Isn't stubbornness isn't defensiveness, it's not denial. It's another neurocognitive symptom just like hallucinations, just like hallucinations or delusions.
Dr. Xavier 14:08
So, this includes unawareness of symptoms, not just the diagnosis, but unawareness of the various symptoms that make up the diagnosis. And this anosognosia presents through the entire course of illness in schizophrenia, but we also find it from research and schizoaffective disorder. And it's a little different with bipolar disorder. It comes and goes, but it is a symptom of the disorder and anosognosia is, as I said, common and schizoaffective disorder and this is important.
Dr. Xavier 14:39
It's the most common predictor of non-adherence to treatment. Now, what does that phrase mean? These are people who will refuse treatment straight out, or they'll secretly stop taking the medication or drop out of treatment. My brother when he came home from the hospital, threw his medication in the garbage can.
Dr. Xavier 15:00
That's where I found it. That's what led to our first confrontation. So this symptom is the most common predictor of refusal of treatment and dropping out of treatment creates a lot of tension and families. Let me tell you from my experience, where I would ask my brother if he took his medication he said he did. And then I'd find it, you know, I found pills on the couch cushions once. And then that led to confrontation and difficulty. More important than that, or as important, I should say, was that he wasn't in recovery. He wasn't getting better. So what's the headline? Our authoritative manual on psychiatric diagnosis for over 22 years describes this problem. And yet most psychiatrists and psychologists and social workers or psychiatric nurses don't actually know about anosognosia, they consider it still to be denial, when someone says, I'm not sick, I don't need help.
Dr. Xavier 15:56
So what about being aware of being mentally ill? And how that impacts acceptance of treatment and staying in treatment? Well, awareness of being ill, as you saw on the last slide, is among the top two predictors of medication adherence, what do you think the other predictor is?
Dr. Xavier 16:12
You know, take a moment and think about it.
Unknown Speaker 16:16
Well, looking at the research on the therapeutic alliance, it turns out the other predictor is a relationship with someone who listens to you without judgment, respects your point of view. So it's very active listening, it's very interactive communication. And that person has an opinion, they'd like to see you in treatment. It's not that they think you it's not that they say, or let's say with my brother, Henry, you need to be in treatment, I learned to say,
Dr. Xavier 16:42
What you're telling me is that you're not mentally ill right. And that must be very frustrating for you all the fears that I told you, you weren't mentally ill. And he would say yes. And then I would normalize that empathy with, you know, Henry, if I were you, I'd be upset about it, too. And he would ask me, What do you think I need treatment? And I would very humbly say, I could be wrong and I'm sorry, I have this opinion. But I'd like you to try the medication. And that's what led to his acceptance of treatment, those kinds of conversations over a six-month period, but it worked. And it worked for 18 years. So what do we know, about anosognosia for mental illness that unawareness, and acceptance of treatment, we don't win on the strength of our argument of giving evidence to the person, don't you see that you're mentally ill, you've been in the hospital, you haven't worked. We don't win on the strength of our argument, we win on the strength of our of our relationship.
Dr. Xavier 17:41
That's how we help the person accept treatment, not trying to get them to see their mentally ill, instead building a respectful, trusting relationship. Now, that's what the LEAP approach is all about. It involves seven tools, I'd like you to imagine the tool belt, these are not steps. These are seven communication tools. So the first tool that I'm going to talk about is reflective listening. That's reflect like I did with my brother, I'd say. So what you're telling me is you're not sick. You don't need medication and I would empathize with them. I would ask, well, how does that make you feel that all these years, you know, I was telling you that you were sick, and you needed treatment. And he told me very frustrated, very angry, I would normalize it using the LEAP approach. You know, Henry, I'd feel angry, too. I feel frustrated. And then I'd focus on areas where we agreed, returning to work, having a girlfriend getting married, those are areas we could agree on, staying out of the hospital was a big one, and that we could partner on that. And then there are three other tools delaying giving opinions. So Henry asked me if any of my patients over the last three decades have asked me
Dr. Xavier 18:49
who don't understand they're mentally ill who have anosognosia asked me, Do you think I'm mentally ill? With the LEAP program, you would say? I promise I'll answer your question. Before I do, can you tell me more about and then I get them talking some more. So I have more of an opportunity to circle back to reflective listening and empathy. When I finally give my opinion, there's the three A's, I apologize, I acknowledge my fallibility. I asked the person to agree to disagree. So when someone with agnosia asked me, Do you think I should be in treatment? I would say, I'm really sorry. The first day, I could be wrong. I don't know everything. That's the second day. The third is to agree to disagree. I don't want to argue with you.
Dr. Xavier 19:36
Since you've asked me,
Dr. Xavier 19:38
remember, remember if we've been delaying giving our opinion, the person's going to ask us. Since you've asked me. I like you to try treatment. I think it's worth a try. Not you need it. You're going to benefit from it. Sometimes you can get away with that and it's helpful. But generally just I'm sorry, I could be wrong. I don't want to argue with you. You know, I'd like you to
Dr. Xavier 20:00
Give this a try. And we apologize for acts and interactions that, that were painful to the person that were difficult, like, with my brother calling the police to take them to a hospital, I apologize profusely for that. It's a very respectful thing to do to apologize, even if even if we felt we were in the right. I mean, I felt that I was in the right to do that.
Dr. Xavier 20:24
So it's really valuable. Let me just cover one of the tools in some detail, leap reflective listening, because it's really different than regular listening. Someone says, I don't need a hospital. There's nothing wrong with me.
Dr. Xavier 20:37
But with Leap reflective listening, I would say something like this. So you're saying is I preface what I'm going to reflect back? You're saying you don't need hospitalization? There's nothing wrong with you. Right? So I'm checking in with the person to see if they felt heard. I don't assume they feel heard. I have to ask them that I get that right. It's another example. I know that delusional example, I know that you're with them, and they're trying to kill me.
Dr. Xavier 21:01
If I heard you, with the people who are trying to kill you, did I get that? Right? I
Dr. Xavier 21:07
don't want anything from you. I didn't ask to come here. I just want to go. That's when I was working in patients. In the hospital, I had one patient who told me that
Dr. Xavier 21:16
all these phrases come from videotaped research that we we did.
Dr. Xavier 21:22
I don't want anything. I didn't ask to come here. I just want to go. So what I'm hearing is you don't want anything from me. And you want to go correct?
Dr. Xavier 21:32
I have the right to kill myself. I don't have anything worth living for. And who are you to tell me? I can't
Dr. Xavier 21:38
look if I heard you, you have the right to commit suicide? You don't have anything to live for? And who am I to tell you that? That you can't do that? Did I hear that? Right?
Dr. Xavier 21:50
That may feel a little uncomfortable for many of you. But let me ask you, am I agreeing with what the person said? I'm not. I'm reflecting back without judgment. And remember that that therapeutic alliance? slide I showed you a few minutes ago, it's without judgment and respect and reflecting back with the person said, I'm not agreeing with it. Look at that first example. If I was agreeing, I would say, you know, I agree with you, you don't need hospitalization. There's nothing wrong with you. I would literally say I agree. This is not agreeing. This is reflecting back. So a brief review. We listen without judgment reactions or contradictions. We express empathy for feelings related to the mental illness and the anosognosia. We find areas where we agree and that's what we partner on. During the course of this. We also delay giving hurtful and contrary opinions. We give our opinion with humility and respect. And we apologize for X in our actions that felt disrespectful. Learning LEAP is just like learning a new language. Practice makes perfect. Roleplay with relatives or co workers and you'll become fluent. General guidelines, absorb what you've heard, usually with reflective listening, emotionally connect through apologies and empathy. And now you can problem solve, you can get to agreement and partnering, use each of these tools as you need them. So thank you very much for your attention. Thanks again for the invitation. You can find videos, free videos and resources at leapinstitute.org and also our nonprofit that Henry Amador Center.org, or hacenter.org. Thank you.
Laura Howe 23:31
Hey, thanks for listening. After listening to that session, I was like, Okay, this is something that I can actually do. The model that he presents is not overly complicated, but yet it seems so powerful. I am sure that you have faced or will feud in the future be in situations where the person needing help is not wanting help. And I hope that this leap the LEAP steps with the elite model that he has shared will be helpful for you. This session is just one example of the many sessions that you're going to have access to at the online or virtual church mental health summit. To learn more about that upcoming event and to register for free. Go to churchmentalhealthsummit.com Thanks for listening and take care.
