Narrator  00:00

Be inspired, supported and empowered. This is the global Healthy Living Foundation Podcast Network.

Niklas Nyblom  00:10

Welcome, you’re listening to “The Psychology of Chronic Neurological Disorders: Where we Discuss Various Mental Health Approaches to Improve Your Physical Care.”

Ian Carroll  00:18

In this episode, we will be talking about chronic neurological disorders, and the ways in which people living with chronic neurological disorders can improve, or maintain, their mental health while experiencing the challenges of living with their condition. In the second part of this episode, we’ll be joined by Dr. Laurie Ferguson, a licensed clinical psychologist based in New York, who will share her expertise and insights with us later on.

Niklas Nyblom  00:40

We’re your hosts, Niklas and Ian.  And I’m Niklas Nyblom, originally born in Tokyo, Japan, but raised in Stockholm, Sweden, and I am a student studying Clinical Psychology in the Master’s program at Teachers College, Columbia University. And I’m also a current intern at GHLF.

Ian Carroll  00:54

I’m Ian Carroll, originally from Pittsburg, Pennsylvania. I am also studying Clinical Psychology in the Master’s program at Teachers College, Columbia University. And along with Niklas, I am an intern at GHLF. So, let’s get started. Niklas, what do we mean when we say a “chronic neurological disorder?”

Niklas Nyblom  01:14

That is a great question, Ian. So, according to the World Health Organization, also known as WHO, chronic neurological disorders is the diseases of the central and peripheral nervous system. These diseases can include, but is not limited to epilepsy, Alzheimer’s disease and other types of dementia, multiple sclerosis, Parkinson’s disease, neuroinfections and many other disorders. It can be the result of many different causes, for example, bacterial infection, genetic predisposition, but there are multiple different factors. So, therefore, in general, when we do think about the onset of chronic neurological disorders, we do think of it as of through a lens of biopsychosocial models; meaning that it can be some genetic/biological predisposition to it, but also different kind of environmental factors, such as life experiences and other things throughout our lives that can combine into being the manifestation of chronic neurological disorders. Because there are so many different factors to consider, when discussing the onset of symptoms, the diagnosis itself can be a very, very complicated journey, and there is no single test that can be used to diagnose a single or more neurological disorders. Most often, the diagnostic journey consists of a comprehensive personal history as well as a medical history, but also a combination with that, and a person’s current symptoms. And even after the diagnosis, the journey to finding a proper treatment can still be a complex ones, as medication is still developing, and also the field of research is still developing as well, to better understand the individual care and factors too. So, Ian, what kind of treatments are available at the moment for people living with chronic neurological disorders?

Ian Carroll  02:52

Yeah, thanks, Niklas, that’s a great question. So, there’s kind of two main branches of treatment available today, the first branch being medication, as you just mentioned. There are lots of different companies that are focused on developing new medications to try to treat chronic neurological disorders, and there’s kind of been a rapid rise of pharmaceutical interventions because of these efforts. Some prescription medications for chronic neurological disorders target the symptoms of the disorder, and then other prescription medications target associated symptomology, such as depression, headache, insomnia, and others. And then the second branch of treatment is psychotherapy. According to the World Health Organization, cognitive behavioral therapy can help a person modify their thought patterns to change emotions, mood, or behavior. And psychodynamic psychotherapy can help people identify and resolve patterns and thoughts, beliefs, and emotions that may cause some of the neurological symptoms. Also, relaxation and mindfulness exercises can help reduce stress that’s associated with living with a chronic neurological disorder.  So now, Dr. Ferguson, can we turn it over to you? First, would you like to introduce yourself for the listeners, and then can you also talk about your experiences with psychotherapy, providing psychotherapy to patients and caregivers to improve their mental health?

Dr. Ferguson  04:08

Well, thank you for having me. It’s good to be with you both. I’m Dr. Laurie Ferguson, as you said, I’m a licensed clinical psychologist, and I’m based just outside New York City. It’s a very complex landscape when you have chronic neurological disorders, both for the person, who has been diagnosed, and for the caregiver. I think that one of the things that is going to go hand in hand with a diagnosis and with the experience of the disease is, in fact, a need for attention to mental health, because you have a new identity. Once you have a diagnosis, the world as you know it has changed. If you’re a caregiver of the world as you know it has changed. And as you said so well, Niklas, many times it’s been a long road to get even to a diagnosis. There have been confusing symptoms, there have been upsetting things happening in the body and in the mind. And so it’s a long road to get there. So, having the mental health care alongside what’s happening in terms of physical care makes a big difference in being able to handle the upset, the stress, and then the living with.

Ian Carroll  05:10

Right, I think that’s a really good point. There is estimates in the current literature that estimate a 50% prevalence rate of depression and anxiety associated with chronic neurological disorders. And so, like you said, Dr. Ferguson, it is very important to kind of marry the mental and physical approaches to that care. A question for you might be, given the high prevalence the high comorbidity rates between neurological disorders and depression and anxiety, how can caregivers, kind of, identify some risk factors that their loved one might be experiencing mental health disorder along with their chronic neurological disorder?

Dr. Ferguson  05:49

So, I’m going to say that I think just a diagnosis is a risk factor. So simply, to be diagnosed with a disease in this very complicated family of neurological disorders is a risk factor. You know, they’re sort of the basic ones that you would understand, withdrawing from activities that you enjoyed, withdrawing from people, not wanting to engage in activities, either with people or things you just found pleasurable to do before. If you begin to see that there are always the, you know, things like changing your eating, sleeping, all of those kind of physical symptoms that happen. I think, disengagement, isolation, and hearing verbally negative thoughts;you know, a sense of hopelessness, a sense of futility, a sense of why bother, you know, why go on. All of those are just danger signals, some needing some kind of intervention.

Ian Carroll  06:38

And just so our audience knows any of the literature or any scholarly links that we referenced during this conversation with Dr. Ferguson, those links will be in the description of this episode, so that you can follow along and read the discussions for yourself. So, look for those links in the description at the end of this episode.

Niklas Nyblom  06:57

Dr. Ferguson, I think you’re mentioning a very, very good point, where it’s an identity transition for when individuals get diagnosed with their disorder, but it’s also a whole systems way where the caregivers get affected as well. And as a diagnosis is not your entire identity, how does this affect the caregivers as well and people around the individual when they get diagnosed? And how can we incorporate hope into this process together.

Dr. Ferguson  07:21

Now, those are two really, really big pieces to pick up. So, one of the modalities that you mentioned, Ian, was cognitive behavioral therapy, and that, of course, is therapy that helps us look at our thoughts. Our sort of constant running thoughts about ourselves, about situations. And so, I think one of the first things we want to begin to address as a caregiver is, what are my constant thoughts that I’m having? Am I imagining scenarios and talking to myself about all negative scenarios? You know. This is going to be the end of this this or this worry or this anxiety, and am I running those over and over? That’s one thing that you would want to address as a caregiver. And how can I shift those thoughts to well, mate, what are the opportunities here, along with the challenges? What things could we work together on in this situation? What conversations can we have with our larger family, our larger community, so that I don’t feel so alone with it and my partner doesn’t feel so alone with it, or the person that I’m doing the caregiving for. What kind of conversations do we need to have with others? So, the two of us, the caregiver and the person with the diagnosis, aren’t isolated. So, there are all kinds of ways you can begin to work with your thinking. In terms of hope, you know, one of the things that I think we get confused about is hope is not just sort of an emotional experience of, you know, “Everything’s gonna be okay.” What really cultivates hope is having a goal, something that we’re working towards, something that we want to have happen, that we can work together on. Goals are also ways in which we can build meaningfulness into our lives, and the meaningfulness and the goal together; having meaningful goals is one of the things that really does cultivate a sense of hope, and also it buffers against depression, and it also buffers against anxiety. If we begin to think, “we’re heading towards this, we’re going to work on this.” “We’re going to look for some things that we enjoy.” “We’re going to have things in the calendar.” “We’re going to have people that we want to be with.” If we’re going to imagine those things, we’re going to use our thinking and our planning. That cultivates hope. And to bring hope in, not for like the way out horizon, but to also bring it in close. You know, what are the goals for the next week? You know, what are the things that we can put in our life for the next week? So, everything doesn’t get absorbed, again, in sort of negative thoughts or scenarios, or also things that aren’t as pleasant for us. How do we begin to put other things in there, besides the tasks that have to be done, sometimes, as a caregiver, or as a person with a diagnosis.

Niklas Nyblom  09:47

I think that is a very, very wonderful and mindful, and detailed answer to a quite complex and large question. I do hear the common theme of human connection throughout your answer in the building plans to see others and how to build goals with the people around you as well. What kind of people and how do you build this human connection with others? What are some advices that you can give to our listeners and our audience on how to build better relationships with people around us?

Dr. Ferguson  10:12

Well, first of all, you remind yourself that you want to and that even if it’s hard, you’re tired, you’re worn out, you’re feeling a little anxious and depressed, and you think I really don’t want to talk to anybody now, it’s sort of like taking vitamins; it’s actually good for you. And it doesn’t have to be something heavy, deep and real, like it doesn’t have to be I have to have really intense conversations. It can be as useful as going out to get a cup of coffee and having a conversation with the person who’s making your coffee, or having a conversation with a person when you’re standing in line somewhere, just saying, you know, “Can you believe this weather?!” When just again, those little connections actually remind us that we are part of a web of other human beings. Of course, if we can, it is ideal to make sure that we cultivate some connections that help us feel cared for, seen, loved, and they can be with people in your neighborhood. It can be with old friends that you reconnect with, that you haven’t seen for a while. It can be with, if you are a person of faith, and your faith leader, those can be wonderful people to lean out to. Being part of community groups. If you’re not a particularly social person to begin with, a diagnosis or being a caregiver can make it even more challenging. So, then you really do have to say, “So, what are the places where I do feel connected?” And it may be on an online support group. You know, I don’t have to go anywhere, I don’t have to necessarily see people, but I can hear that I am not alone. I also know that having a pet and having a plant can help you feel connected again to something larger than yourself, that you care for, that also loves you. Our plants do love us. They turn green, they turn towards the light, they bring something into the room. So, all of those are connections that can help you feel alive and not alone.

Ian Carroll  11:55

Yeah, Dr. Ferguson, I love that answer. It’s such a beautiful way to put it: our plants love us back. And I wanted to connect what you’re talking about back to the psychotherapy aspect that we talked about before, because it seems like the things that you’re mentioning are all behaviors, that B in CBT. And one way that Niklas and I have talked about in our school program is the homework associated with cognitive behavioral therapy a lot of times. So, for those who might be unfamiliar; in therapy, you might end the session by getting a little quote-unquote homework assignment, where the therapist might challenge you to go out and do one of these behaviors, say “Hi!” to somebody, all of those great tips that Dr. Ferguson just shared with us. So, Dr. Ferguson, I know you mentioned a couple things, but in your experience, are there any homework type of assignments that might help people facilitate that human connection that we use in cognitive behavioral therapy?

Dr. Ferguson  12:47

Well, I think I love that word “Challenge,” right? I think sometimes we have to challenge ourselves, because the tendency can be, I’m too tired, we say “No” instead of “Yes.” So, an easy challenge is, when somebody offers me some help, I will say “Yes,” that can be a lot of challenge for people like, “I don’t want to be dependent, I don’t want to be needy,” but to say, “Yeah, that would be great, if you would…” and then ask for something specific, “If you could bring a meal,” “If you could take them to the doctors,” “If you could rake my leaves.” People want to help, and we get very defended against that. But that would be a challenge. Another tip would be, again, for people that really don’t like talking out loud as much. Would you be willing to journal four mornings out of six. Would you be willing to just write down how you feel? Writing down how you feel privately, not you don’t have to share it with anyone, but to write it so you’re just not holding it in your head, or in your heart, or in your body again, is a way to help move some of these feelings and thoughts out, so they are not just staying in. So, those would be two challenges of homework. What have you seen as challenges?

Niklas Nyblom  13:49

That is a very good question. Based on what we have learned, I love positive psychology. And one of our challenges that we received from a professor, named Dan Tomasulo. He made us use the character strengths; we had to use the VIA character strength – It’s a great survey – It basically gives you 24 different strengths. And he challenged us to use our top five strenghts. So, my number one was, for example, “Love of Learning.” So, my challenge was to connect with people in using that strength, the love of learning, teaching each other new things. So for me, that being half Swedish, half Japanese, very much came up a topic on, “Oh yeah, we have this in Sweden. We have this in Japan,” and making that very interesting for the people around me, and connecting with one another. So, I would say the challenge is more what can you do to connect with people? Of course, it’s very easy, or easy said rather than done, to just say “Hi!” to someone or connect over a cup of coffee, but what do you actually do when you have that conversation with someone? And I think that’s something that I learned from Positive Psychology: you can use your character strengths. You can use the things that motivates you to talk with others, in a way.

Dr. Ferguson  14:52

And I love that! Both of you were talking about things that you found personally motivating. And I think when you’re already a caregiver or when you are a person that’s dealing with a diagnosis, to imagine that you have to now take on a whole nother set of things that you have to do to help yourself feel okay. That’s a very high mountain to climb. So, the sort of the leaning into the things that you find fun or that you find easy that give you a little bit of bump of happiness or of joy, our viewers can’t see you, but both of your faces are lighting up as you talk about these ideas, and that makes such a difference. If you are in a situation, where things feel really hard and maybe even scary, to know that what can help you, or some of the things that make you feel happy or that even make you laugh. I encourage people to find humor, whether movies that are funny, podcasts that are funny, comedians, you know, humor does really help lighten us. So, you know you were talking about hope, Niklas, hope can sound like such a heavy thing, but sometimes, when we laugh, it just changes the atmosphere, and things that felt a little overwhelming are a little less overwhelming, and those things that we find enjoyable. I know one person, who was diagnosed, their caregiver got them a kitten. They were not a cat lover, and they would were very resistant, but the caregiver really wanted one, and brought one into the house, and it brought such laughter, just watching the kitten sort of roll around and be fun, and it lightened the atmosphere. And I have to say, the person with the illness really was won over to it. So, there can be some fun and different things like that, that also really help. Mental health doesn’t have to be this, like really big, serious thing. It also is what makes us happy to be alive, just because you have a diagnosis, and it feels challenging, and you’re having to scramble to sort of see the world in a new way; there are still the things that make you enjoy.

Niklas Nyblom  16:45

Yeah, I think you’re mentioning a very, very good point there, Dr. Ferguson, where happiness comes very much from doing what we do enjoy, doing the self awareness of understanding our own motivations and the inspirations that makes us happier and creates hope, eventually. One question that came out of mind is what changes have you seen in clients and patients, who incorporate these things into their life after their diagnosis? What kind of positive effects have you seen from the happiness that they have been able to create after their diagnosis?

Dr. Ferguson  17:14

Well, and I think it also is related to finding meaning, that the meaningfulness of my life is not determined by my diagnosis. And I still have things that are meaningful to me to do and to people to be with, and things to think about. Creativity is another piece; when I’ve seen people work with their diagnosis and sort of have a realistic appraisal, “Okay, this is where we are. This is what’s going on. But I work on my creativity. There are things that I still like to do, that I can offer. I continue to come back to the things that are meaningful to me.” I think those are the two biggest pieces, along with cultivating relationships, those three things, I think, are really the pillars of how I’ve seen people move forward well with their in their lives.

Ian Carroll  17:59

Yeah, Dr. Ferguson, so this is actually something that we referenced in the first conversation that we had a couple of weeks ago in preparation for this recording. And we talked about some of the research of Dr. Lisa Miller, who is a professor in the Spirit, Mind, Body Institute (SMBI) at Teachers College, Columbia University. And Dr. Miller’s body of research is very, very in line with what we’ve been talking about so far. She talks about the awakened brain as her book, and she mentions how connecting with small tasks that you enjoy can eventually build up to foster this concept of resilience. So, I guess a question off of that would be, how would you understand the difference between hope and resilience, and then, can you talk a little bit about the bottom up process of resilience that we talked about a couple weeks ago? You explained it so beautifully, so I think the listeners would benefit a lot from hearing that explanation.

Dr. Ferguson  18:53

Thank you for that question. I think people confuse hope and resilience. I think resilience has that to me, it has that almost physical quality. You can feel it in your body when you say it, it is the ability to recover quickly from setbacks. You know, that’s one of the definitions. But I also think of it again, as being very rooted in having a sense of meaning in something larger than ourselves. And again, that sort of creativity or generativity. I think those things, really, you know, help us see our lives in a larger perspective, which I think is what Dr Miller is talking about with the awakened brain, and that the part of our brain that pays attention to things that are not just tasks, but that are really the larger world. So things, she would talk about wonder and awe as a part of meaningfulness and a part of what creates our resilience, which is that sense that the world is larger than I sometimes even imagine or see, and that when we work from that part of our brain, our perspective literally enlarges, you know, we have a much larger ability to sort of see things beyond our just narrow perception. It broadens our perception so all. Those things, I think, are ways of being human in the best sense. And when people are presented with the challenge of a diagnosis or being a caregiver with someone for a diagnosis, those deeply important pieces of being human, of knowing the world is larger, of having a sense that I’m held in that world, that there is love, that there’s possibility that I may not see right now, but that it’s present. I think that’s what Dr Miller is talking about with the awakened brain. I think when you have the shock or the day to day managing of caregiving or living with limitations that you didn’t expect, it’s very normal and very natural for the world to begin to narrow and get much more task oriented, and the worry and the anxiety are always at hand, and so it takes effort. And I think resilience is, again, something that we have to constantly refresh in ourselves. You know, it’s to me, I think of it as like a lake or a pond. Some people think of it like a bank account. You draw it down, and then you have to build it up. And what we’ve been talking about in this podcast, are ways in which people build up their resilience. You know, the meaningfulness, the hope, the small activities, the connections, all those things sort of come together and sort of an alchemy of how we become resilient, but it takes intention and attention to do it. What would you all add to that? I know, you know that literature, yeah.

Ian Carroll  21:21

I mean, I don’t really have anything to add. I think that’s an amazing explanation. And I do think a lot of people that might be outside of the landscape of psychology do confuse hope and resilience. So thank you for delineating those two terms for us. And yeah, one thing that I also appreciate about your response is that Dr Miller, as I mentioned before, she teaches in the spirituality Mind Body Institute. So when you mentioned connection to something bigger than ourselves, for her, it’s respective faith practices. But my like your explanation, it can be anything that provides wonder and awe. For some people, it could even be sports, which a lot of people mention. And then I also like in your response, connecting it to the small tasks. That’s why I think journaling is so great because, like you said, it extracts us from our day to day tasks. Psychotherapy is great because we kind of have to take a bird’s eye view over our life and connect some of those dots that we might not connect just by living.

Niklas Nyblom  22:12

I completely agree to that as well. Very, very good response, and looking at it from a micro towards a macro perspective as well, is that, yeah, there are various many different things. There is no right answer, and we can’t really look at this from a black or white perspective. In a way, it’s very much looking at the specific individual, but also seeing it as a large part of something bigger than themselves. So, I do like that perspective, where we can look at it from faith, of course, but also sports. You can look at it from art going to the Met Museum, for example.

Dr. Ferguson  22:40

Art, nature, there’s all kinds of ways that people get that larger perspective, something we haven’t touched too much on, but I don’t want to end without it is the pull towards isolation that happens, both with the diagnosis and being a caregiver, and that, you know, sort of a downward spiral of being isolated, just kind of saying we’ve got to just grit our way through this. Some people think of resilience as grit, and actually, resilience has a much more bounce to it than grit. We do need persistence in order to deal with challenges. There’s no question. But when it starts to isolate us, when we start to feel like I’m too tired, I can’t I don’t want to talk, I don’t want to be around. In some ways, the benefit of therapy is just feeling like you’re not alone doesn’t have to be a really big grand thing. It’s somebody that reminds you that you’re not alone, either as a person with the diagnosis or as the caregiver. And you can also ask your medical professionals if they know of support groups, if they know of places where they can plug in and have somebody listen to them, learn some more.

Ian Carroll  23:42

Right. And I think that mentioning the pull toward isolation is really, really important, especially for a podcast episode such as this one talking about neurological disorders, because that pull toward isolation is especially inherent in neurological disorders. What comes to mind for me is thinking about Alzheimer’s and other dementia disorders, where you might not be even physically isolated, there might be other people around you, but your ability, your mind’s ability, to feel the connection between those physical presences might be limited because of your neurological disorder. So, that’s where, like you said, it is extra important to pay attention toward how you’re facilitating connections and being really intentional about having that aspect of your life remain; even after your diagnosis and challenges with neurological disorders.

Niklas Nyblom  24:29

And it was a very well studied, and I completely agree with that as well, the intention about facility and connections is very important. And of course, as we’ve been talking throughout this episode about the importance of resilience, but also the human connection to, kind of like, maintain your mental health as a caregiver or also as a person living with chronic neurological disorder. So, I do want to ask as our last question to you, Dr. Ferguson, what is one big takeaway for listeners? What can they do to improve their resilience but also incorporate hope into their lives?

Dr. Ferguson  24:58

That’s such a big question. I think. One thing they can do is to look around and notice something that they enjoy, that they may have put to the side, either because of the diagnosis or because they’re a caregiver, and make a commitment to themselves that they will in the next few days do that thing that they enjoy, even if they have to sort of push and nudge themselves to do it, and maybe even ask somebody to help them stay accountable. I am going to do that. I am going to go out and I am going to walk and enjoy it, or I’m going to buy myself some flowers, or I’m going to get that book that I’ve been thinking about and didn’t feel like I had time to read, whatever. There are millions of things out there. That’s maybe my bucket list, but one thing that you have not been doing that you enjoy and make a commitment to do it again. We’re going to take baby steps. Nobody becomes resilient overnight and the minute that you’ve had this kind of shock, or you’ve had this ongoing journey of illness and caregiving, it takes time and attention to know that you can get what you need. You can get help. You can get connections. You can build resilience. But again, baby steps, it’s more important that you do a little bit every day than that you do one big thing.

Ian Carroll  26:10

Yeah, then I think that’s such a great point. And my big takeaway from this episode was exactly that. When you described the difference between hope and resilience, and those actions that you can take to build up your resilience slowly. I think that’s a huge important point of this episode for our audience. So, thank you again for sharing that with Niklas and I on this episode.

Niklas Nyblom  26:29

Yeah, I think that is a very, very wonderful takeaway. And it’s very similar for me as well, where I particularly got focused on the community building aspect. And I do very much find it very applicable in times where we’re very much rely on technology as well, where we need to find our community. We need to find people who have the similar passion and interest as us, and also develop those relationships and the connections that we want to have in our life to build upon that resilience and hope. And with that said, thank you so much, Dr. Ferguson for joining Ian and I’s first episode of this podcast. It was a pleasure to have you here, and thank you so much, Ian for having such a great discussion – everyone together.

Ian Carroll  27:05

Yeah, thank you Niklas, and thank you again, Dr. Ferguson.

Dr. Ferguson  27:07

Well, thank you all. Always a pleasure to be with you.

Ian Carroll  27:12

And as Niklas and I continue our meaningful work here at GHLF, we also hope that you were able to enjoy this conversation and look forward to hearing more of our learnings from the classroom put into practice here on this podcast. And to our listeners, thank you for joining us on “The Psychology of Chronic Neurological Disorders: Where we Discuss Various Mental Health Approaches to Improve Your Physical Care.” We hope we’ll be back soon for more episodes. If you have any questions, thoughts, or suggestions, you can send us an email to [email protected]  If you’ve liked what you’ve heard, be sure to rate our podcast, write a positive review, and spread the word by sharing with your friends and family. It’ll help more people like you find us.

Narrator  27:56

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Narrator  00:00

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Niklas Nyblom  00:10

Welcome back to “The Psychology of Chronic Neurological Disorders: Where We Discuss Various Mental Health Approaches to Your Physical Care.” We’re your hosts, Niklas Nyblom and Ian Carroll, and I’m Niklas

Ian Carroll  00:21

and I’m Ian. In the first part of this episode, we will be discussing schizophrenia, a severe mental health disorder. Niklas and I explain how psychologists might diagnose this disorder, how we understand its complex symptoms, and what common treatments are available today.

Niklas Nyblom  00:36

In the second part of this episode, we will discuss some interesting findings from a recent GHLF quick poll that highlighted major barriers to care facing people living with schizophrenia. Let’s get started! Ian, can you give us an overview of what we are talking about when we say schizophrenia?

Speaker 1  00:56

Absolutely! So, Schizophrenia is classified by the American Psychiatric Association in the DSM-5-TR, which is, basically, just one large manual that includes every psychiatric disorder as a psychotic disorder, which is a family of disorders that also includes similar diseases, such as brief psychotic disorder, schizoaffective disorder, schizophreniform disorder, and others. These psychotic disorders are marked by the presence of psychosis, which is an extreme response to a psychological or physical stressor in a person’s life. Psychosis impacts a person’s affect, their ability to understand and portray emotions, as well as their behaviors. The main factors that a clinician will use to determine the most appropriate diagnosis among psychotic disorders is the duration of symptoms, although symptom severity does also play a role in certain diagnostic decisions. When we’re talking about psychotic disorders, such as schizophrenia, we’re talking about disorders that include the presence of hallucinations or delusions. Hallucinations are involuntary sensory experiences not related to external stimuli. You might have heard colloquially about somebody hearing voices or seeing people that might not be there. Delusions are fixed beliefs about oneself, others, or the world that are not open to change, even in the face of contradictory evidence. Importantly, delusions are bizarre and not derived from ordinary experience; you might have heard somebody who has the belief that the government is following them. Together, hallucinations and delusions comprise what are referred to as the positive symptoms of schizophrenia. An easy way to remember this term is that positive symptoms add to a person’s experience of reality. Along with the positive symptoms, psychotic disorders also include other symptoms, such as disorganized speech and thinking, disorganized or abnormal motor behavior, reduced affect, which is a decrease in emotion, avolition, which is a decrease in the ability to initiate and pursue goal directed behavior; alogia, which is a reduction in the amount or quality of speech; anhedonia, which is an inability to experience pleasure; and asociality, which is a decrease in social behaviors. These symptoms, which reduce cognitive, emotional or behavioral functioning, are referred to as negative symptoms. And when we refer to schizophrenia, specifically, we’re talking about the most severe form of a psychotic disorder, because it requires that psychotic symptoms be present for the longest amount of time, in relation to other psychotic disorders. For schizophrenia, symptoms have to persist for six months or longer. Because of the symptom duration, this disorder is considered to be pervasive across a lifetime, with periods of heightened symptoms and periods where symptoms might decrease in their presentation. Niklas, now that we have discussed psychotic disorders and differentiated schizophrenia from other psychotic disorders, can you explain our current understanding of the potential causes and current treatments of this disorder?

Niklas Nyblom  03:52

Yes, of course. Thank you so much for that great overview of schizophrenia. So, as Ian spoke about the various experiences that are included regarding schizophrenia, generally, when we do speak about theonset, it is most likely understood as a complex interplay of both genetic predispositions and environmental factors; hence, it is not one or the other, but it is rather a combination of both that varies in each person. This can be good information to keep in mind as we move forward to discuss about treatment options. When it comes to treatments, we are going to focus specifically on medications and psychotherapy. First, there is a wide range of medications available to treat schizophrenia. In general, they are divided into two different categories: 1. Typical Antipsychotics, otherwise known as first-generation antipsychotics, and 2. Atypical Antipsychotics, otherwise known as second-generation antipsychotics. Typical antipsychotic medications primarily block dopamine receptors in the brain, whereas atypical antipsychotics block dopamine receptors as well as other types of neurotransmitter receptors, such as serotonin and norepinephrine. Both types of antipsychotic medications help in reducing the positive symptoms of schizophrenia, while atypical antipsychotics are generally better at reducing the negative symptoms as well as the positive symptoms. Hence, today, atypical antipsychotic medications are the main frontline treatment for schizophrenia and other psychotic disorders. Now, while both types of pharmacological treatments can improve symptoms, neither come without side effects; typical antipsychotic medications carry the side effect risk of movement disorders, namely tardive dyskinesia, which is characterized by involuntary, uncontrolled movements; while atypical antipsychotics have a lower risk for these movement disorders, they typically carry higher risks of metabolic disorders, such as weight gain, high cholesterol, and/or diabetes. Very recently, there has been an effort to develop newer targeted therapies that address the symptoms of psychotic disorders without the severe side effects of first and second generation antipsychotics. The most important factor in receiving adequate care is to talk to your provider, and to be honest about how the treatment is going for you. There are different treatments, medications, dosages, therapists, and more important factors that could influence your treatment.

Ian Carroll  06:19

Yeah, thanks, Niklas, that’s really clear and one important factor that could influence your treatment brings us to the next point that we should definitely talk about, which is psychotherapy.

Niklas Nyblom  06:28

Yes, in general, the medications that we have discussed are typically combined with psychotherapy. And just like medications, there are different types of psychotherapists that can be used to treat schizophrenia, because while medication primarily targets psychotic symptoms. Psychotherapy helps improve social functioning, meta cognition, and emotional regulation, which is why psychotherapist does not replace medication, but it has the potential of enhancing the treatment outcomes by addressing the symptoms that medications alone cannot manage. In a study, conducted by Modesty with colleagues, in 2023, it was shown through a systematic review that cognitive behavioral therapy, also known as CBT, has been a most studied psychotherapy for treating schizophrenia, but also has the most evidence based treatment to reduce positive symptoms. It is also recognized for reducing the intensity and distress that can be caused by hallucination and delusions. In addition to CBT, other psychotherapy treatments include psychodynamic focus treatments and dialectical behavior therapy for psychosis, both of these treatment modalities have shown promising results in reducing some of the symptoms associated with psychosis.

Speaker 1  07:37

And my key takeaway from what you’ve been saying about medication and psychotherapy is that they should be preferably integrated with one another, but also each can be tailored to a patient’s needs for the best possible outcomes.

Niklas Nyblom  07:50

So, once again, as previously mentioned, you as a patient, in order for you to receive the most adequate care, we recommend that you talk to your provider, that you’re honest about how the treatment is going for you, and that you are aware of the different treatment options that are available for you as well. And now, that we have discussed these different treatments, I think the listeners have gotten a sense of how challenging treating schizophrenia can be, and even with the different treatment options that are available, many people still face significant barriers to care. So, let’s explore some of these challenges. Ian, what are some of those challenges that people face living with this disorder?

Speaker 1  08:26

Yeah, that’s a great question, Niklas, and one that GHLF was actually interested in asking our patient network, in order to gain more insights into the challenges associated with schizophrenia. In February, of 2025, GHLF conducted a poll, where we surveyed patients living with schizophrenia and their caregivers, and here are some of the major findings from that poll. First, nearly 45% of the respondents said that they live with schizophrenia themself or know someone living with schizophrenia. Of these respondents, who know someone living with schizophrenia or have the disorder themselves, many mentioned the severity of the symptoms associated with schizophrenia that we discussed earlier in this episode, and they noted the ways in which these symptoms impact a person’s quality of life. These responses detailed many quality of life impacts, but first I want to discuss difficulties in getting approved for disability benefits, as well as enrolling in Medicare or Medicaid. Without disability and insurance benefits, the pharmacological interventions that we mentioned are very expensive, which is a considerable barrier to care for many people and families impacted by schizophrenia. Along with this high cost of medication, another barrier to care mentioned by our Patient Network was what we call medication non-adherence, which is when a patient does not use their medication as prescribed by their provider. High medication costs contribute to the high levels of medication non-adherence seen with schizophrenia, and there are other factors at play here as well that make it hard to get the necessary care. We discuss the severe side effects of atypical antipsychotic medications before, which lower the medical adherence rates. Another consideration here is that the positive symptoms of schizophrenia, which inherently disconnect a person’s lived experience from reality, make it incredibly difficult for a person living with the condition to stick with their medication schedule. Overall, medical non-adherence is a large barrier to care facing people living with this disorder and their caregivers. Next, people also noted how difficult it was to receive a correct diagnosis for their disorder. This is another huge barrier to care identified by GHLF’s Patient Network through our quick poll. Much like medical non-adherence, there are many factors that contribute to the difficulties with diagnosing schizophrenia and distinguishing this disorder from other psychotic disorders, because the same psychotic symptoms that are the main markers of psychotic disorders can be present across other psychiatric diagnoses, and the same negative symptoms that are present in psychotic disorders can be present across neurological disorders – it can be tricky to identify schizophrenia itself. Qualitative responses from GHLF’s quick poll recounted many stories where patients described a long, winding journey to receive a correct diagnosis. Along with difficulties receiving disability and insurance benefits, as well as difficulties receiving a correct diagnosis, the final major barrier to care identified in this quick poll was the major stigmas that exist surrounding schizophrenia and psychotic disorders. While stigma and mental health has been a hot topic in the last few years, there is actually a limited amount of scholarly literature to date that discusses the stigmas associated with schizophrenia and barriers to care. Some research does suggest that over 55% of people living with schizophrenia have experienced stigmatization in their life. This finding is consistent with GHLF’s quick poll, in which 54.5% of respondents claimed that stigma was a challenge they faced when trying to access appropriate health care. One way that these barriers to care can be impacted is through patient advocacy. When asked, “Which of the following would help you in managing your schizophrenia?”, nearly 1/3 of the quick poll responses said that legislative advocacy could help reduce the stigmas associated with their disease, as well as make medication excess easier. Furthermore, over 36% of respondents said that employer education could further reduce stigmas, and 27% of respondents claimed that peer support groups, or community groups, could alleviate the burden of this disease. Only 9% of responses claimed that they don’t need additional resources to better manage their disease, which highlights the great need for more resources to alleviate barriers to patient care.

Niklas Nyblom  12:32

Thanks, Ian, for those interesting findings. Clearly, stigma remains a significant hurdle for people living with schizophrenia, making it even harder to access the care and the support they need. But while these challenges are real, there are ways to push for change – that’s where advocacy comes in. Ian, can you tell us more about how patient advocacy can help address these barriers?

Speaker 1  13:01

Patient Advocacy organizations, like GHLF, are working to empower patient advocates in order to help patient communities implement some of these changes identified by people living with schizophrenia and their caregivers. And for our listeners who might not know, GHLF also has a 50-State Network which is dedicated to raising the voice of patients to decision makers. The 50-State Network is comprised of patients all over the U.S. who share their story to advocate for policy change. We get involved on health policy issues on the state and federal level to ensure patients have access to the care and medications they need to feel good. As we see here in the quick poll results: advocacy and access are such big parts of the schizophrenia patient journey.

Niklas Nyblom  13:47

Thank you so much, Ian. For our listeners, we encourage you to join the 50-State Network to advocate, or share your story with us at [email protected]  There will also be a link featured in the description of this episode, where you can get involved with the 50-State Network and start your journey to advocacy today.

Speaker 1  14:05

And if you’re interested in learning more about any of the topics we’ve discussed in this episode, the links to all the research we referenced will be featured in the episode description as well, so make sure to check those out for more information.

Niklas Nyblom  14:17

Well, Ian, I feel incredibly thankful to be working with you and GHLF on talking about schizophrenia, and opening up the topic of how it is to live with it. It is a topic that is not talked openly about enough. So, thank you, Ian for your explanations throughout this episode, to help identify the major barriers to care for people living with schizophrenia.

Speaker 1  14:37

Yes, and thank you as well, Niklas, for helping to untangle this very complex topic with me during this episode.

Niklas Nyblom  14:45

We both want to say thanks to you, the listeners, for joining us for this second episode of “The Psychology of Chronic Neurological Disorders: Where We Discuss Various Mental Health Approaches to Improve Your Physical Care.” If you have any questions, thoughts, or suggestions, you can send us an email to [email protected]

Speaker 1  15:05

And if you’ve liked what you’ve heard, be sure to rate our podcast, write a positive review, and spread the word by sharing with your friends and family. It will help more people like you find us.

Narrator  15:19

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.