Caregiving for Schizophrenia

A third of all people will be a caregiver at some point in their life. Caring for people with schizophrenia is a challenge that many people are ill-prepared for.

Host Rachel Star breaks down the principles of nursing and the creative ways to navigate in schizophrenia.

Dr. Sarah Kopelovich splits to share the specific training for schizophrenia carers.

About our guest

Sarah Kopelovich, PhD, is a forensically trained licensed clinical psychologist in the Department of Psychiatry and Behavioral Sciences at the University of Washington School of Medicine. Dr. Kopelovich is an assistant professor in the department and holds the professorship for cognitive behavioral therapy in psychosis. Her current research focuses specifically on implementation and dissemination strategies for psychotherapeutic and psychosocial interventions in schizophrenia spectrum disorders. She regularly conducts workshops, seminars and professional counseling across the country for a range of mental health professionals and trainees in CBT for psychosis. Recreational cognitive therapy; Individual resilience training for psychoses of the first episode; Assertive community treatment; and risk assessment for diagnosis, suicide, and violence.

www.PsychosisREACH.org

Back to life, back to normal: Volume 2 describes many of the cognitive behavioral techniques used in Psychosis REACH training.

(https://www.amazon.com/Back-Life-Normality-Relatives-Schizophrenia/dp/1107564832)

Computer-generated transcript of the episode "Care for Schizophrenia"

Editor's note: Please note that this transcript was computer generated and therefore may contain inaccuracies and grammatical errors. Thank you very much.

Announcer: Welcome to Inside Schizophrenia, a glimpse into better understanding and living a good life with schizophrenia. Moderated by the well-known lawyer and influencer Rachel Star Withers and with Gabe Howard.

Sponsor: Listener, could changing your schizophrenia treatment plan make a difference? There are options that you may not be aware of. visit OnceMonthlyDifference.com to learn more about once-monthly injections for adults with schizophrenia.

Rachel Star Withers: Welcome to Inside Schizophrenia. I am your host, Rachel Star, here with my wonderful co-host, Gabe Howard. Gabe, now it sounds like we have a very muddy topic. Care, right. I could feel like the title It sounds like a nice Hallmark movie. But we're going to get involved in a way, I don't mean to say deep but intense stuff with that. We talked about it before, Gabe. We have a strong feeling that this word is used for people with mental health problems.

Gabe Howard: Nursing is generally only thought of in a positive way, but as people will learn, very positive things can also have a downside.

Rachel Star Withers: And right off the bat, I don't like the term caregiver because it automatically puts that person above the other. Of course, if my mother is my carer, she has to look after me for some reason. I can not. I'm sick. I am inferior. You know, there's a problem somewhere that's true in there, but it does, it just gets to the point mentally. And, you know, Gabe, I rave about my parents all the time. You are absolutely wonderful. And I can't live alone I find it difficult to accept that in some ways they are my caregivers because that means that I am a burden to them. And I know they would never describe it that way. But as a 35 year old adult woman, I feel bad when I have to depend on someone else.

Gabe Howard: So here's the caregiver problem, right? It all becomes comprehensive. Let's say we get in tomorrow, we're going to use a car crash, and for the purposes of this analogy, you're going to recover. However, in a car accident, you break both arms and legs. This is like a pretty high level care. Nobody would argue that you need care and that the person doing it is your caregiver. But, on this analogy, remember that I said you will make a full recovery. Eventually, you will start using your body parts again. First your hands work and then your arms and your family or caregiver start working less and less and less and less. And in terms of physical health, people acknowledge it. People acknowledge that you need less support and less help. In mental health, it doesn't matter whether you're the worst of the worst, the sickest of the sick, or you're Rachel Star and all you really do is just live and hang out in your parents' basement. It is spoken the same way, and I think that is the problem. Law? Because now when people say, oh Rachel, your parents are your caregivers, they immediately assume that you are the worst of the worst and have no partnership, no control, no skills. And you are not helping with your own care.

Rachel Star Withers: And I also think whoever they talk to, like that third party, they automatically feel sympathy, like you poor thing, you have to deal with it, you poor thing. And I don't mean to say that I get jealous as the person who has the problem, but it's also like that, OK, well, they're not the ones who hallucinate.

Gabe Howard: We have more sympathy for the people next to the person with schizophrenia than for the person who has schizophrenia. And you could imagine someone saying, Oh, you know Rachel has cancer, but the real sufferers are her family, like everyone is in their arms

Rachel Star Withers: Oh yeah.

Gabe Howard: And not tolerate that. But when you say Rachel has schizophrenia but the real people who suffer are her family members who instantly like them, well, but I mean, they've been through a lot. It can't be worse for her than it is for you Rachel

Rachel Star Withers: Yeah, just to make it clear to everyone, when we said caregivers today, we're not talking about doctors, nurses, that sort of thing, we're talking about the kind of normal everyday stuff. As caregivers they could be paid, but most caregivers are unpaid members who are related or in the social environment of the dependent. Usually our supervisors have no professional training. We have a wonderful guest today who will talk to us more about nurse training. The majority of carers are women. I think a lot of women already have such a maternal role and they will usually be the first to engage as caregivers. Typical tasks are all little things, okay? Daily activities are what caregivers do. They manage medication and make sure you are taking your medication properly. You can speak to the doctor or nurse or whoever on your behalf.

Rachel Star Withers: With schizophrenia, what we need may change. When it comes to schizophrenia, caregivers may need to help with things like cleanliness, preparing meals, making sure the person is eating healthily, and not just continually eating pop-tarts. There are currently around 50 million family carers nationwide in America. Fifty million people. There are so many. And if you paid them, it would be about three hundred and six billion dollars in theory. So family care like you is worth a lot of money. For my people out there listening, it's a thankless, usually moneyless job. And a third of us, a third of all people, have to be caregivers at some point in their lives. But you also need to consider the person and make sure that they still have respect and dignity. Nobody wants someone to tell them what they can eat what they can't eat. OK, you will do that today. As if nobody wants to control their whole life from someone else.

Gabe Howard: And nobody wants to be seen as less than. People with schizophrenia often don't have enough respect to make up for the burden. We only have the burden. This is much to overcome to be seen by society that it hurts our families in addition to treating schizophrenia. That's, that's great. That is, that is mighty big. We don't want to hurt our family. We love our families. And we are incredibly grateful for everything they do for us. We just want to make sure we don't get lost in this discussion.

Rachel Star Withers: If you're a caregiver for someone who, like you said, has a broken bone, if you're a caregiver for someone who is older, you know what to expect. But with schizophrenia, it's not that predictable. As a caregiver for someone with schizophrenia, one has to look out for other things. One of the biggest will be drugs and side effects. If the person you are helping is also depressed then you really need to watch out for suicidal tendencies, signs that that person may not need to be alone. This person may need to change their medication. And the side effects I know, Gabe, and you've seen me do my little dance here, but I have tardive dyskinesias that make me shiver and there are just a lot of side effects that can affect people with schizophrenia differently. That is not predictable. With these drugs, and we had a previous episode about them, you can be prone to more illnesses. For example, diabetes is a great risk if you have schizophrenia. If you've ever taken antipsychotics, they usually put them on very frustratingly quickly. So the supervisors have to watch it somehow. And I'll be honest, Gabe, I don't like the idea of ​​someone telling me what I can and can't eat.

Gabe Howard: Well, right, because you are an adult and you have to make your own decisions. Let's do this on a basic level like human dignity, if you don't choose your own meals, your own food, if someone else does, you make this basic decision. How much well-being do you actually have if you don't even have the autonomy to decide what to put in your own mouth, what food and meals to eat?

Rachel Star Withers: Another thing that changes with schizophrenia compared to other types of disorders, illnesses, etc. is the cognitive ability to have disorganized thoughts. Sometimes and it's so hard to explain when people ask me about it, but sometimes I forget something very simple, how to zip my jacket. It's just as if the piece is gone and you can have an in-depth conversation with me. I am fine. But then I'll do something. And I think oh no how do I do this random thing? And I'll be confused This is what nurses need to look out for in schizophrenia. I don't need anyone to help me get dressed. I don't need someone to come over and choose my clothes for me. But then some days I get confused and can't remember how to do anything. And if I just toss that out of there, my way is to lay out my clothes in advance and always have a backup set that doesn't have fun things like zippers and things in it. Schizophrenia is unpredictable. Gabe, I had a really bad psychotic episode a couple of weeks ago and I haven't had this bad one for over a year, 99% of the time I don't need any help.

Rachel Star Withers: I hallucinate and have little delusions and things, but I can do it myself. I usually don't tell anyone. But that was different. And when it happened I got really scared. I knew I didn't understand the reality. I couldn't get my phone to work. I tried texting my mom who was upstairs and I couldn't seem to text. I couldn't remember how to write text. I was like a fight against my cell phone. I don't know if I wrote a text message, the right person couldn't put words together and somehow I got into the kitchen. Finally, my mother, she got some of the text messages. She came out and got me and stayed with me the rest of the night. That was very scary. And I am very happy that she was there to intervene. Again, there was once a year that she had to do that. But we don't know when that will be. She might have to get up for work early the next morning or something. So when you deal with schizophrenia it is very unpredictable. And it's like you're on call, like you're ready to help if the person needs help that way. But most of the time they might be fine.

Gabe Howard: And of course that can be frustrating for everyone involved, I mean who wants to be on call? You make your day, you do what you are supposed to and then boom right in the middle of it this thing happens that you have to be 100% for your loved one and that you want to be 100% for your loved one. And hopefully your loved one realizes what you are doing and they need help. And that's why I think it's extremely important to have a plan if you're okay. You know, one of the things Rachel is good at, and we've talked about throughout this entire podcast series, is that she doesn't just talk to her family about schizophrenia when she's in crisis or when she's hallucinating when she's has a problem. This is an ongoing conversation they have, even if she is okay. The analogy I like to use is like a fire brigade drill when the house is on fire. However, the best time to install smoke alarms and the best time to do a fire drill is when your home is not on fire. It's similar with schizophrenia. And I think a lot of carers miss this. And, in fairness, many people living with schizophrenia miss it too. We want to believe that if everything is okay, everything will stay okay. And we just want to focus on the here and now and not make a plan for what happens when things turn out differently.

Rachel Star Withers: As many of these caregiving relationships as my own are parents, grown children, and mothers out there. Many of you just don't step into the care. You just step into motherhood and just take over like you did when they were five. And that's where a lot of the tension comes from. Because I've spoken to so many mothers who are just overwhelmed when trying to help their adult child and don't know what to do. And part of that is you're trying to do too much. You need to acknowledge what the person with schizophrenia can and cannot do. I'd much rather bring someone food and say, eat it, and then say, OK, well, let's work the plan out. You're going to cook this, don't you know I understand. It's more work. It's totally easier to just dominate someone and make all the decisions. But you can't do that. Gabe, I have a boyfriend in his thirties but he has schizophrenia and he lives with his parents and he is disabled and they keep fighting because his parents take all his money for disabilities and he doesn't like it. He's like, that's my money. And I thought if you were traveling alone you would still have to pay for rent, groceries, utilities, etc. So I believe that because you are using these things, you are entitled to do so. I don't think they should take it all. But if they give him money, he immediately spends it on alcohol and gets drunk. I don't know, Gabe. What are your suggestions? What do we do because I know so many people who feel trapped? We're stuck in this circle and don't know how to get out of it.

Gabe Howard: In the scenario you have been given, both sides are right. The family needs the money to cover the expenses caused by the person living with schizophrenia. We cannot ignore that. However, we cannot ignore the fact that the disability test is carried out by this person. It's on their behalf and they feel like they have no choice. They feel like their money is being stolen. But on the other hand we go back to the other side. They feel that if I give this person the money, they are making dangerous decisions. You know, buy alcohol and especially in the case of family dynamics, if that person is consuming alcohol it will interfere with the medication. You have a crisis. This crisis affects the whole family. So when you look at it all, these things are very difficult to solve because the reality is that both sides are right and both sides are wrong. This is where it's really important to understand. I call it negotiation in good faith. If you have the idea that the other side is wrong and you are right, then you are not negotiating in good faith. And I speak to both the caregiver and the side of people living with schizophrenia.

Gabe Howard: And that also points to a bigger problem where these two sides are often at odds. You often see yourself as heroes versus bad guys when in reality you are none of those things. This is very important. These things are resolved in a variety of ways, whether through compromise, walking a mile in the other person's shoes, or understanding. So often, caregivers do not think that they are the ones who need to seek mental health help. They don't believe family therapy is necessary because, after all, they are that big, strong caregiver. Only the person with schizophrenia needs help. It is important that you understand that if something is contributing to the decline in the mental health of the household, it means that the entire household needs mental health help. And so often do people think, well, I'm not as sick as my loved one with schizophrenia, so I don't need any help. Don't look at it that way at all.

Rachel Star Withers: And you need to know what you can and can't do. Most people have to work full time. OK so we get this. This is almost like a second job, or maybe a third job for many on top of your life. And it gets intense. Family members are great because they are usually the main support system. Whenever you make that decision about whether the person with schizophrenia lives with you, I actually like it. It's a little diagram, Gabe, that I have here, but it's called

Gabe Howard: I love charts too.

Rachel Star Withers: I know, but it is said that living with your family and you with schizophrenia works best when you can function well and continue to have friendships and activities outside of the home, which means that I can still be am taking on part of it time job, volunteering. I still have friends to talk to. It's not just me and my parents and that's it. Another reason is that the relationship around the family is relaxed. You know, if you're always in high tension with a certain family member, it gets a lot worse if you add schizophrenia and then live together. You want to make sure that other support systems are in place. Again, you cannot do everything yourself. We talked about NAMI and different things, support groups, and the doctor asked them. As a caregiver, make sure that you are not all people with schizophrenia and make sure that the living situation is not negatively impacted with young children at home by the person with schizophrenia. Children come first. Always make sure they are protected and everything. For the most part, I would say my family has, they go with all of these.

Gabe Howard: Ok, Rachel, but on that note, what things are immediate disqualifiers? Like family life isn't recommended when what happens?

Rachel Star Withers: Well, when the caregiver is single, sick, or older, it gets really difficult. You know, someone in their 80s is going to have a very difficult time helping out someone with schizophrenia. That's just the truth. When the schizophrenics are functioning very poorly, they need more help than you can give them. So when I say high functioning, low functioning, I mean that I am usually considered a highly functional schizophrenic, which means that for the most part, I am fine for two weeks that I could live on my own. But after that I get weird and I have a couple of little jumps where I need a lot more help. But I am highly functional. A bad function would mean that I would need a lot more help and supervision. I need someone to step into my life, help me make important decisions, help me with my money, etc.

Gabe Howard: Makes sense. Understood.

Rachel Star Withers: You shouldn't take care of the person in your family if it puts a strain on your marriage. When your life is in tatters, you cannot help anyone else. I cannot stress that enough. And you will hate that person that you want to help because you think, well, I lost my marriage. I lost my job because of this person. It will affect you both negatively. You just have to accept that you cannot do everything.

Gabe Howard: And I think that's really the key. We'd like to point out that opposing it doesn't necessarily mean you do it personally. It could be about getting the person to take proper care. For example, let's go back to the car accident scenario I gave. I am not an EMT. I am not a trauma surgeon. I don't know how to put a bone. If this happens to my friend Rachel, of course the best I can do for her is to call 911 and get her help. When it comes to mental health, we have a tendency to do just the opposite of saying, Oh, I'm going to pick you up, Rachel, and we'll take you away from the car accident. We start doing all kinds of harm because we are not aware of it. Sincerely ask other family members to sign up, call friends, call the local charity, schedule an appointment with a therapist, and see what you can do. And honestly, by the time you listen to this podcast, you are already beginning that process. You're looking for clues and tips on how to get better. Again, I really feel the need to be clear. In the car accident analogy, when I call 911 for Rachel, I'm 100 percent doing what I can and making sure Rachel gets the best possible result. We need to start thinking this way instead of thinking this way about mental health. OK, well I need to fix 100% of this because after all I love my child, boyfriend, family member, etc.

Rachel Star Withers: Well, Gabe, we've really been a downer so far.

Gabe Howard: And we don't want that

Rachel Star Withers: We don't want that, but we have all of these issues that we discussed. How do we fix it? One of the best things you can do is set rules or make it clear as a caregiver what is expected of you and as a caregiver what is expected of you so that you know when you are pushing your limits. Make sure the caregiver has to give something too. Well? It's not just like taking, taking, taking. Now it could be little things. It could be. You know what, hey, if you can vacuum when you can handle the food, but make it clear that this is a partnership, it's not just one person completely dependent on the other. Knowing what you can and can't do can change over time. For the most part in my family I buy a lot of it like groceries and the like. I like being able to deliver food, food and things to do because I feel like I am contributing to the household. I don't just live in the basement, creep around the house in a creepy way, take everything and don't give back.

Gabe Howard: I really like what you said about little things that are really important. I have a pseudo child in my life. I have a granddaughter and they are a young family. You are in your early 20s. You have a two year old. You don't have a lot of money. You are just starting out in life. You just bought a house. In short, if we go anywhere I pay 100% of the time. I buy dinner, I buy the putt-putt tickets, I put gas in the car because I can afford it. The other day my daughter-in-law bought me a Diet Coke. She showed up at the house. She ran errands. She had to give something. And when she came by she gave me a diet coke from my favorite spot. Straw and everything, just like I like the light ice cream. It cost her a dollar. It meant a lot to me, an incredible amount, and it meant a lot to her because she had to give something back in a small way. And you know, it was hugged. You need to understand that these things are very, very powerful and that this analogy breaks into the caregiver's relationship with someone living with schizophrenia.

Gabe Howard: Find out what this is. Because it empowers the person and gives them hope and certainty to move forward as a caregiver. So often we prefer to just sit there and think I'm paying for everything. Well i do anything? Well, they don't help at all. Find these, I'll call them Diet Coke little moments. When you get the idea that you will always be the caregiver and that they will always need help and that they will never contribute, you are creating a self-fulfilling prophecy.

Rachel Star Withers: And so often when someone has to move home or needs care, they recover. They are recovering from a very bad psychotic episode, or they have just been diagnosed with schizophrenia and they are going through it. So make sure you have goals for where I want to be in a year. If your goal is to live alone, now you cannot. If the caregiver is overly careful and just takes over my life, I'll never get to that point because I don't know how to get up on my own. You did everything for me So, if you can find goals that will help you, make sure that you, the caregiver, know when to step back. As a caregiver, there are a few things you need to look out for in your own life. There actually is a so-called caregiver syndrome, and then you're just kind of burned out. And you can be burned out at a job, many things in life, but you don't feel like looking after someone anymore. And that manifests in exhaustion, anger, anger, depression, anxiety, and even physical things. High blood pressure, diabetes. That's all we talked about earlier. Gabe, it's like helping someone else with these very same problems and now you have the problems.

Gabe Howard: Yeah, you can't pour from an empty cup. I know it's a cliché, but if you're not doing well, what support do you offer? Sincerely, Rachel, would you like help from someone who has been sleepless, distracted, angry, frustrated, confused, and angry? Is this the person you want to show up to provide lifesaving aid in some cases?

Rachel Star Withers: Not me, Gabe. The stress there. Now can you imagine if I live with this person and it just never ends? As a caregiver, you need to learn to step back and take a vacation, even if it's like a short vacation during the day. Really cool. I actually spoke to this family and they had a young teenage son. He was diagnosed with childhood schizophrenia. And so he had been treated with antipsychotics for quite a while. And they definitely influenced his weight. And the parents were pretty much finished. You do so much to help your child. And on top of that, they worry about his weight gain.

Rachel Star Withers: So what happened? The uncle entered. The uncle decided to train with the young man. And it was kind of cool. You know you have the cool uncle. The pressure wasn't there. They went out, he picked them up, they left, and they did physical activity every week. For one thing, this gave parents the opportunity to take a little break so they wouldn't have to worry about the son, but it also gave the son a social outing. And he felt like I don't have to do that. I'm going to hang out with my fun, cool uncle. And I love that. And that's something like, if you can incorporate that, look around. Wenn es andere Familienmitglieder gibt, hören Sie zu, ich mache dies, dies und das bereits. Gibt es eine Möglichkeit, wie Sie bei einem dieser Dinge helfen können? Wenn eines Ihrer Familienmitglieder gerne kocht? Yo, wie, vielleicht könnten Sie ein bisschen mehr machen. Vielleicht könnten Sie vorbeikommen und zeigen, wie Sie sich als Betreuer eine Pause gönnen können. Sie können sich auch mit solchen Situationen des betreuten Wohnens befassen. Denken Sie nicht, dass Sie alles tun müssen. Holen Sie sich Hilfe, wenn Sie sie brauchen.

Gabe Howard: Ich denke, viele Menschen leiden in der Zeit der Korona unter Stress. Daher ist es sehr wichtig zu verstehen, dass externe Faktoren, die außerhalb Ihrer Kontrolle liegen, die Dinge ändern können, egal wie sehr sich Ihre Familiendynamik bemüht. Und der springende Punkt dabei ist, dass es ein ständiges Gespräch und eine fortlaufende Partnerschaft zwischen allen Parteien sein muss. Andernfalls werden Sie nicht flink genug sein, um zu überleben, wenn etwas passiert. Natürlich glaube ich nicht, dass irgendjemand eine weltweite Pandemie gesehen hat, aber dennoch verwalten Menschen mit Schizophrenie auch eine weltweite Pandemie, ebenso wie die Menschen, die sie lieben.

Rachel Star Withers: Und wir sind gleich nach einer Nachricht von unserem Sponsor zurück.

Sponsor: Es kann sich manchmal so anfühlen, als ob eine weitere Schizophrenie-Episode gleich um die Ecke ist. Tatsächlich ergab eine Studie, dass Patienten in weniger als sechs Jahren durchschnittlich neun Episoden hatten. Es gibt jedoch eine Behandlungsplanoption, die dazu beitragen kann, eine weitere Episode zu verzögern: eine einmal monatliche Injektion für Erwachsene mit Schizophrenie. Wenn die Verzögerung einer weiteren Episode für Sie oder Ihre Angehörigen einen Unterschied bedeuten könnte, erfahren Sie mehr über die Behandlung von Schizophrenie mit einmal monatlichen Injektionen bei OnceMonthlyDifference.com. Das ist OnceMonthlyDifference.com.

Rachel Star Withers: Und wir diskutieren wieder über Schizophrenie und Pflege.

Gabe Howard: Rachel, Sie müssen Zeit mit Dr. Sarah Kopelovich verbringen, die Assistenzprofessorin ist und viel über Pflegekräfte geforscht hat. Sie hat uns Dinge wie Mitgefühlsermüdung beigebracht, und es war sehr, sehr cool. Ich habe es geliebt, Ihr Interview zu hören. Also lass uns jetzt weitermachen und das spielen.

Rachel Star Withers: Wir sprechen heute hier mit Dr. Sarah Kopelovich, einer lizenzierten klinischen Psychologin, und sie ist auch eine Assistenzprofessorin, die viele sehr interessante Forschungen zu Schizophrenie-Spektrum-Störungen durchgeführt hat. Und heute haben wir über Hausmeister und die Rolle gesprochen, die sie bei der Unterstützung verschiedener Menschen mit Schizophrenie spielen. Herr Doktor, erzählen Sie uns etwas über Ihre Forschung und wie sie mit der Ausbildung von Pflegekräften umgeht.

Sarah Kopelovich, Ph.D.: Sicher. So my primary area of expertise is in psychotherapeutic interventions for people with schizophrenia spectrum disorders and other forms of serious mental illness. I do a lot of work trying to increase access to these evidence based psychotherapies. And the kind of frontline intervention in that realm is cognitive behavioral therapy. In trying to increase access to cognitive behavioral therapy for psychosis, how do we leverage other members of the treatment team and the natural support team so that we can really take an all hands on deck approach to helping people get access to good quality skills that can help them cope better with the symptoms of psychosis? There is a model called Psychosis REACH, which was developed by Dr. Douglas Turkington, who also happens to be one of the co developers of Cognitive Behavioral Therapy for Psychosis that teaches family members cognitive behavioral therapy concepts and skills so that they can have more therapeutic interactions with their loved ones. We have now piloted an eight hour training in May of 2019 and it was a huge success. So we found that just through a one day training, we were able to improve the well-being, so in other words, depression and anxiety, scores of the family members who attended that one day training and there was no other intervention involved. It was just that one day in person training, correcting myths and misconceptions about psychosis, providing background, and how can cognitive behavioral therapy help improve your life and well-being and depression and anxiety? And then how can you use these skills and concepts to improve relationships with your loved ones? So we’re really excited about these preliminary findings and we’re continuing to provide this training to family members in the coming years. Now, virtually, of course.

Rachel Star Withers: That’s really amazing. So it’s just a one day training as of right now?

Sarah Kopelovich, Ph.D.: This is a one day training and it is outside of any mental health clinic. We know that our national schizophrenia treatment guidelines recommend that the care team is providing family intervention for psychosis, but unfortunately, that’s just not playing out in practice. Only about two percent of families in the United States who have a loved one with serious mental illness are receiving any kind of family intervention for psychosis. So our goal was to take this out of the clinic. And I was able to do that because I was very, very fortunate to receive philanthropic support. So we offered this training to anyone. We provided financial support for travel and lodging. We brought them all together in a beautiful space, catered and just really communicated to families you’re valued. We care about you and we want you to learn. We know you’re doing as well as you can. We want to help you do even better.

Rachel Star Withers: So why is caregiver training important?

Sarah Kopelovich, Ph.D.: Well, we know that for a long time now, families have been in the shadow of the mental health system in our country. I talked about how 98% of the time families are not brought into their loved one’s mental health treatment, and this is contrary to the overwhelming evidence. Research shows that if we can support families appropriately, we can save money, we can save relationships and we can save lives. We spend three hundred billion dollars annually on costs associated with serious mental illness. And much of that comes from hospitalization costs. Which it just so happens that family interventions like caregiver training, one of the strongest outcomes that we see for this intervention is reduced hospitalization rates and reduced number of days in the hospital. In terms of saving relationships, there’s this really interesting study about 10 years ago out of Delaware. They just asked people living in the community with a schizophrenia spectrum disorder, do you feel alone? And 90% of the people that returned a survey said yes. And yet it’s also true that 90% of individuals with psychosis are in close contact with at least one family member. Psychosis can be a terribly isolating experience. So you can be surrounded by people, and by very well intentioned people, and feel so utterly alone. And we can change that. We can help get the relationship back on track. We can improve quality of life. And then, of course, that brings me to that last point, which is that family interventions like caregiver training can save lives. So one third of people with schizophrenia will attempt suicide and one in 10 will die from suicide. When you ask about why caregiver training is important, it’s about saving families and saving lives. It’s about giving family members a very different message than they’re likely receiving, which is that they should expect recovery. That’s what the data supports, is that most people who experience a psychotic episode will experience wellness, will experience recovery, and families need to hear that.

Rachel Star Withers: Very nice, I agree on that. When I know most people hear caregiver, we tend to think of someone taking care of like an older family member. When my grandfather and my grandmother both had Alzheimer’s, I remember we kind of had to do a little caregiver training, but it really had nothing to do with the mental. How is your type of caregiver training different than, let’s say, dealing with someone who’s in their 90s like we were?

Sarah Kopelovich, Ph.D.: Yeah, well, so first I want to clarify that I’m using the term caregiver quite broadly to refer to anyone who identifies as a support person. So that could be a biological family member, a significant other, a friend. And in terms of how it differs from other kinds of caregiver training, I think the domains in terms of what it’s trying to accomplish are actually more similar than they are different. If you are the loved one or the support person of somebody who’s experiencing an episodic or potentially episodic condition, then there are some basics that we need to help you to do. One is to have accurate information about the diagnosis and to be realistic and also hopeful. And with schizophrenia and other forms of psychosis, there’s a lot to be hopeful about. Despite all the doom and gloom you might confront on the Internet or in even peer reviewed journal articles, there’s a lot of progress that is being made in the realm of psychosis, recovery and treatment. Family members need to hear that. Otherwise, they’re going to go do a Google search or they’re going to talk to a family member that has their own anecdotal experience, and it might not be positive. Law? But there’s a lot to be positive or hopeful about. Family members want and need connection with their professional care team, but also that connection with other caregivers.

Sarah Kopelovich, Ph.D.: And that’s across conditions. And then finally, I think they want resources and skills training. How do I, how do I help? What helps? And what makes things worse? They want to know what can I manage at home and what will the professionals be doing to help my loved ones recover? And then on the flipside, what in the home environment might be counterproductive to my loved one’s recovery? And what kinds of treatments might be unhelpful? There are more similarities than there are differences. But when we get a little bit more granular, a little bit more detailed, that’s where we start to see differences within the Psychosis REACH training and other kinds of family interventions. We’re going to be giving psycho education, obviously, about psychosis. We’re going to be really defining some boundaries for a training so that when we teach you these skills, our goal is not for you to do psychotherapy with your loved one. Law? That is not indicated, nor is that within your skill set. It’s really about helping you to apply some of these skills to yourself in your own life so that you could be more effective with your loved one.

Rachel Star Withers: When you’re doing these different trainings or you’re speaking with loved ones, support givers and whatnot, what are some of the common problems that they bring up to you?

Sarah Kopelovich, Ph.D.: My colleague, Maria Monroe-DeVita, conducted focus groups before we started the Psychosis REACH training and these focus groups were across the state of Washington with families who had had a loved one hospitalized for a psychotic episode. And what these families disclosed can really be boiled down to two things. They wanted skills to manage their loved one’s illness. And they said that they wished that they had had someone, and they were referring to another family member, appear to tell them, this was my experience. This is what you can expect. Here’s what worked for us. There’s something incredibly powerful about connecting with other people who have walked that path before. And then they also wanted to know things like how do I respond when my loved one is experiencing a delusion? How do I help them when the voices get really intense or really degrading? They’re referring to things like coping skills, problem solving skills, communication skills. So that’s exactly what Psychosis REACH teaches them. How do you help? What do you do in those situations? And then also how do you know when to back up? Because we also need to make sure that we are meeting people where they’re at and kind of know when to tactfully withdraw from the situation.

Rachel Star Withers: How can your loved ones know when they need to tactfully withdraw or maybe kind of step back from a situation?

Sarah Kopelovich, Ph.D.: So it’s really important to know that we cannot progress from a place of conflict. Sometimes things can escalate quite quickly or unpredictably, and you find yourself in a situation where now people are yelling. And so that’s not a therapeutic interaction, right? That’s a situation where we need to actually withdraw. You know, this is a bad time. Let’s come back to this another time. Or shift topics, right? Hey, I’m wondering if you caught the game last night. I missed it. Can you fill me in? Falling back on the relationship, going to neutral topics, getting back on the same page with your loved one. Hey, I know it’s really important to both of us that you stay out of the hospital and I can see you’re feeling really unsafe right now. What can we do to help you feel safe in this moment?

Rachel Star Withers: So many times, including my own situation, you have a support person or caregiver that’s a parent, and the person that they’re supporting is their own child, an adult child with a serious mental disorder. Not only do you have the stress of the parent child, but with that added schizophrenia and psychosis. Can you speak on that?

Sarah Kopelovich, Ph.D.: Sure, it can be a really tricky balance, right? You have a parent who wants their child to be well and can feel quite helpless and might be concerned for their well-being, for their safety, for what’s happening with their school. Are they going to get so off track that they’re going to have implications for their future? And then you have a young adult who is appropriately going through this process of separating from the parent and individuating, really becoming their own person, independent of their parent’s aspirations, their parent’s thoughts and ideas. It can feel quite stifling for the young adult to now have a parent who is taking care of them, who’s asking them about their medications. Who’s asking them about whether they’ve gone to their therapy appointment. That’s part of what we try to do with the Psychosis REACH training is to create a different dynamic. How do we change that dynamic that has started to unfold with the diagnosis or with the onset of the disclosure of the symptoms so that we don’t have so much stress and tension in the home? And this is really coming from a key finding in the psychotherapy literature where we see that that therapeutic relationship is the key to positive outcomes in therapy. So we work with the family members to identify shared goals. What’s important to you and what’s important to your child? And the way to get to those goals might be different. And usually it is, right? Usually they can both be on the same page about the fact that they want to be healthy and to kind of get back to the things that matter to them.

Sarah Kopelovich, Ph.D.: But the parent thinks that the way to do that is to take this set of medications and to throw themselves back into life as usual. And the child thinks, well, when I smoke marijuana, that’s what helps me, right? It’s not these other medications. But the goal is the same. How do we take that goal and work from there? How do we help them activate positive emotions by thinking about positive memories, by having other things that they connect about outside of just the illness. And so when we can redevelop that healthy relationship, then we can progress to other kinds of skills, like inquiring curiously. So asking and not assuming, asking good quality, curious, open ended questions about your child’s experience, about their perspective, about what they want. We can teach parents to not fear their child’s experience. A lot of that concern and that tension that’s happening is coming from a place of fear. If we can tell parents actually voice hearing is a really common experience. And there are a lot of voice hearers all over the world. And here’s what we know about what leads to distress in some and not in others. Then they feel a little bit calmer. They feel a little bit less anxious about what their child is going through. And then we can help them work on the higher level skills as well, like trying out different skills together and getting feedback.

Rachel Star Withers: Very interesting. A large part of our audience is caregivers and the support people, family that are all around different people with schizophrenia. What do you have to say to all of those people?

Sarah Kopelovich, Ph.D.: What I want to say is it’s not your fault. That if you feel like you’re not doing enough or you feel like your child or your loved one isn’t getting enough, that it’s not your fault. And psychosis is nobody’s fault. That needs to be the first message right out of the gate. Psychosis is nobody’s fault. We have a lot of wishes for behavioral health system transformation, and we know that the system isn’t doing as well as it could be to help meet their needs. So I have training in dialectical behavior therapy as well. And one of the principles of dialectical behavior therapy is this assumption that we’re doing the best we can and at the same time we can do better. That’s the message I tell myself every day. That’s the message that as a policy advocate, as a mental health professional, I communicate to mental health providers and administrators. And that’s what I share with family members as well. You’re doing the best you can. And when we know better, we can do better.

Rachel Star Withers: It’s very interesting that you said that one of the main important things is that it’s not your fault. That was just kind of really struck me because in my own situation with my parents being my main support system, I do think it comes up a lot. And I would say that for other people with schizophrenia and their support system, that our family. Yeah, that’s a big thing is did I cause this? Did I give this to my child? Did something happen under my watch to my child to cause this? And I hear that a lot. As far as like, did something traumatic happen? This is very interesting. That’s one of your main points, you’ve got to accept right away that it’s not your fault. That just when you said that, it really struck me that was very powerful.

Sarah Kopelovich, Ph.D.: Absolutely, the more we know about psychosis, the more complicated that picture becomes, because it’s really not this simplistic model of how you’ve got this set of genes, then you’re going to develop schizophrenia. There are a lot of contributors to psychosis. We used to see psychosis as this really uncommon, abnormal state. Psychosis is far more common than we used to know. And across cultures. There are the schizophrenia spectrum disorders are one kind of set of causes for psychotic experiences. But there are a lot of people who have psychotic or psychotic like experiences who don’t have a mental health diagnosis. There is not a clear formula for this, but what we do know is that it’s not any one thing.

Rachel Star Withers: It’s a very powerful point that. Definitely helps a lot of different support people out there who are listening to hear that. So how can caregivers find training?

Sarah Kopelovich, Ph.D.: In my mind, the place to start is the National Alliance on Mental Illness, NAMI is the largest mental health organization for families, been around since 1979, and it’s really become a leading voice on mental health. What NAMI provides is both a way to connect with other families and also they provide their own set of education and resources to family and caregivers. And because they are such a large organization, there’s a good chance that you’re going to have a local NAMI chapter in your region. I find their trainings are a really nice base for families who are just beginning their journey supporting a loved one with psychosis. A lot of their educational programs will teach you about some of the common terminology. They’ll talk about different treatment options for different disorders. And then a lot of families will find that they’ll benefit from more specialized training. For loved ones who struggle with a family member who doesn’t agree with their diagnosis, which sometimes gets referred to as poor diagnostic insight or something called anosognosia, for those families they might find a specialized training program is helpful. And the LEAP Foundation, which is directed by Dr. Xavier Amador, can be really informative and helpful. They have a number of offerings, a number of different trainings that they’re now offering virtually.

Sarah Kopelovich, Ph.D.: It’s kind of the silver lining to the dark COVID cloud is that so many of these trainings are now being offered via distance learning. The LEAP program uses principles and techniques from motivational enhancement therapy or motivational interviewing to really target communication patterns and to improve relationships for family members who are looking to learn concrete coping and problem solving skills and to dive deeper into their understanding of psychosis. They can sign up for the Psychosis REACH training. We had our first training back in May 2019. We got a little off track because of COVID, but we are offering now our second training. It’ll be our first virtual Psychosis REACH training. We’re really excited because of the philanthropic support that we’ve received for this training, I’ve been able to get the leading expert on CBT for psychosis, a psychiatrist named Dr. Douglas Turkington, who co developed CBT for Psychosis and Psychosis REACH, and he’ll be leading the training. And then in May 2021, we have another training that will also be virtual that folks can pre register for. They can go to www.PsychosisREACH.org to learn more and to preregister.

Rachel Star Withers: Sarah, and I understand you have some different books that you can recommend.

Sarah Kopelovich, Ph.D.: Sure, Dr. Turkington and Dr. Spencer have written a book called Back to Life, Back to Normality: Volume 2, and this outlines many of the cognitive behavioral techniques that we’re teaching to families in the Psychosis REACH training. So I highly recommend that one. That’s been a big asset to the families who’ve gone through our Psychosis REACH training in Washington. And then I have a book chapter coming out next year in 2021. It’ll be in a book published by the American Psychiatric Association called Decoding Delusions Advanced Psychotherapy Practices for the Clinician. And I’ll have a chapter in there called Supporting Families Caring for Someone with a Delusion. I will also go through the Psychosis REACH training key points.

Rachel Star Withers: Well, thank you so much for sharing all of that with us today. I know that you have definitely helped a lot of our listeners who are support family and caregivers. I know my mom, I’m definitely going to have her listen to this and check out the books and the REACH program that you spoke about. Thank you so much for joining us today on our show, Sarah.

Sarah Kopelovich, Ph.D.: Thank you so much for having me. It was so nice to be here.

Gabe Howard: Rachel, a great interview, as always. What was your main takeaway?

Rachel Star Withers: It really kind of threw me during our interview when she said it’s not your fault. I don’t know, like why that struck a chord with me, but it just kind of maybe like, I guess, peacefulness almost. You know, caregivers, a lot of times it’s a family situation. You need to know that stuff going on, a lot of it’s out of your control. You didn’t cause it. And the same thing for people like me who have schizophrenia, you didn’t pick this. This is just something you got that you have to learn to deal with. But you didn’t do anything bad. You didn’t do anything wrong. And that’s not something that we tell ourselves very much, Gabe. I think it’s easier to blame yourself for everything, whether you’re on the caregiver or the receiver end of that. It’s easy to be like, well, you know, this is all happening because I can’t work anymore. This is all happening because this person’s lazy. But, you know what? A lot of this stuff, it’s no one’s fault. We just got to figure out how to deal with it. That gave me peace.

Gabe Howard: I can certainly understand why. When you start blaming people, you expect those people to fix it. If I say this is Rachel’s fault, well, then I can just sit back and do nothing except be angry that Rachel is not fixing it. And the reality is, is if it’s nobody’s fault, then that gives Gabe and Rachel an opportunity to work together to assess the situation, find the problem and fix it. And the fixing it is what we want. I’m angry because I’ve blamed Rachel and she’s not fixing it. That manifests itself as me being angry at Rachel, but in reality, I’m mad at the problem that’s not being fixed. And I’m placing the blame not on the problem, but on an individual. That spoke to me a lot.

Rachel Star Withers: Absolutely right, Gabe, and a lot of this keeps coming back to one thing, communication. Make sure that whatever the situation is between the caregiver, the care receiver, talk, make a plan, define the roles, what is expected of each person and reexamine them depending on if I’m doing better, if I’m doing worse. If I don’t need you to help me get dressed, don’t do that. All right. However, I could be sick one day and I haven’t showered in a few days, and you might have to help me. So be up front, reexamine the roles, know what’s required of each person. That way you don’t have to, like, step on toes. And to my fellow schizophrenics, check in, let people know how you’re doing. I’m really bad at this, OK? I won’t tell people I’m having a hard time until it’s really, really bad. And I don’t need to do that. I need to speak up. But it’s awkward sometimes. Just to be like, oh, hey, just so you know, I’ve been hallucinating a lot. I don’t know, I’m bad about that. But we need to step up, you know, let the other people know when you need help or especially if there’s signs that you notice that you’re going into a psychotic episode. Give them a heads up. Hey, by the way, this has been happening a lot. If you could just kind of watch me a little bit closer. We all need caregiving in some way during our lives, you know, we need to take care of each other, whether you are a family member or a close friend or even a neighbor or let’s say you signed up for a program and this is a stranger and you’re stepping up. That’s awesome. But know that you’re appreciated and make sure to treat each other with dignity and respect. I’m Rachel Star. Thank you so much for listening to today’s episode. Like, share, subscribe, pass it around to all of your friends and we will see you next time here on Inside Schizophrenia.

Announcer: Inside Schizophrenia is presented by PsychCentral.com, America’s largest and longest operating independent mental health website. Your host, Rachel Star Withers, can be found online at RachelStarLive.com. Co-host Gabe Howard can be found online at gabehoward.com. For questions, or to provide feedback, please e-mail talkback@PsychCentral.com. The official website for Inside Schizophrenia is PsychCentral.com/IS. Thank you for listening, and please, share widely.

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