- [Jeff] Welcome to "Healthy Minds".

I'm Dr. Jeff Borenstein.

Everyone is touched by psychiatric conditions, either themselves or a loved one.

Do not suffer in silence.

With help, there is hope.

(gentle music) Today on "Healthy Minds"... - Psychosis is a symptom, a set of symptoms.

It's not a disorder, but we're generally talking about people with a group of disorders that would be considered schizophrenia spectrum disorders or mood disorders like bipolar disorder with psychotic features.

And we're talking about sort of a group of younger people, say, you know, from the age of, like, 15 to 30.

But it's important to note that psychosis can be due to medical condition or substances or medications.

And that can occur at any point in life.

But when we talk this notion of first episode psychosis, I think people are really referring to this group of symptoms and then associated disorders that occur, you know, schizophrenia-related disorders, mood disorders that occur during this period of, you know, late teenager or early young adulthood.

- That's today on "Healthy Minds".

This program is brought to you in part by the American Psychiatric Association Foundation and the John & Polly Sparks Foundation.

(gentle music) Welcome to "Healthy Minds", I'm Dr. Jeff Borenstein.

What should you do if you experience psychosis for the first time?

Psychosis includes hallucinations, hearing voices, seeing things, delusions, fixed beliefs that are false, and other symptoms.

What should you do or what should your loved one do to help you?

Today, I speak with leading expert Dr. Lisa Dixon about first episode psychosis.

(gentle music) Lisa, thank you for joining us today.

- It's my pleasure.

- I want to jump right in and ask you to describe first episode psychosis.

What's it like for the person who's having that experience?

- First of all, you know, what is psychosis, right?

So psychosis is a symptom.

It's not actually a diagnosis, but it's a set of symptoms that includes delusions which are false fixed ideas, ideas that the person believes are true, but which, you know, it would, most people in their environment and their cultural context would say are not true.

Also, hallucinations, you know, which are perceptions that are not sort of grounded in physical reality, like hearing voices or seeing things that aren't there.

If you talk to people who are experiencing this for the first time, you know, there's a whole variety of responses.

For some it can be terrifying, scary, unsettling, confusing.

For others, it can be fun or reassuring or make you feel good, or, you know, if you have a voice that's telling you you're great and you feel like you're on top of the world, you know, then it can be positive.

So there's not, like, one experience, but I think, and then you sort of say, "Well, okay," most of the people that I know that have had psychosis are people who have ended up in treatment, right?

And so if you end up in treatment, that may be just a subset of the people who experience psychosis.

So, and I actually think, you know, there's some evidence to suggest that more people experience, way more people experience psychosis than necessarily present for psychiatric treatment.

So we have to be a little bit careful.

But I think in, if I reflect on my own family experience and on the experience in my work, the experience of early psychosis, you know, it can, runs the gamut depending on how the person interprets it, the context in which it occurs, and the place in the person's life.

And it's important to note that when we talk about first episode psychosis, we're generally talking about, again, psychosis is a symptom, a set of symptoms.

It's not a disorder, but we're generally talking about people with a group of disorders that would be considered schizophrenia spectrum disorders or mood disorders like bipolar disorder with psychotic features.

And we're talking about sort of a group of younger people say, you know, from the age of, like, 15 to 30.

But it's important to note that psychosis can be due to medical condition or substances or medications.

And that can occur at any point in life.

But when we talk this notion of first episode psychosis, I think people are really referring to this group of symptoms and then associated disorders that occur, you know, schizophrenia-related disorders, mood disorders that occur during this period of, you know, late teenager, early young adulthood.

- Excellent description.

And I think you're right to say each person experiences it in their own way.

This is very individualized.

Even if some of the symptoms such as hallucinations or false beliefs are common, people experience that in different ways.

I wanna ask you about the program that you are leading, OnTrackNY, which is, has been developed to help people when they experience that first episode of psychosis.

- One key contextual, a couple of key contextual, both scientific and historical kind of information, is that schizophrenia, again, that's one of the main disorders that we associate with first episode psychosis has, you know, been thought of as a really highly disabling illness that, you know, in which people do not achieve, you know, their goals about work and social relationships and family, et cetera.

And it's always, it's often thought of as, you know, a disease of deterioration.

There is a whole series of a really body of research that shows that, or suggests that the shorter the duration of untreated psychosis, okay, the better the outcome.

So what do I mean by duration of untreated psychosis?

That means, like, take the case of my brother, okay?

My brother developed psychosis probably when he was about 21 or 22, maybe 20, 19.

He didn't get care for several years for a whole variety of reasons.

This was a long time ago.

We didn't recognize it.

He didn't seek help in a way.

And so we could say his DUP, duration of untreated psychosis, was three or four years.

Other people, you know, develop these symptoms and, you know, particularly say if their symptoms that bring, you know, that maybe bring them to clinical attention or there's aggressive behavior or behavior that, you know, is out of the ordinary, they may be recognized earlier and have a shorter quote unquote duration of untreated psychosis.

So there's a whole body of literature, and it's not a perfect body of literature by any means.

There's a number of problems with it, but that suggests that the, again, the shorter the duration of untreated psychosis, the better the outcome.

And I just have to say we don't know that it's cause and effect, but it has led to the hypothesis or the notion that if we can intervene early with young people who develop these symptoms and get them effectively treated and engage them to be effectively treated, then their longer term outcomes may be a lot better.

So that's, like, was a foundational premise of this whole, like, early psychosis space, so-- - And I wanna just interrupt to emphasize, because it is important for people who are watching who may have a loved one that's experiencing this, that at this point in time, the belief is, the scientific evidence is, no evidence is perfect, that an early intervention, early treatment is better for the long-term prognosis for the person.

I think that's an important message for our audience to hear, and that different people have different prognosis and there are people who have a diagnosis of schizophrenia and are able to function at a good level.

So I just wanted to sort of summarize some of the key points that you just made for our audience.

- I think the one nuance, and this gets into the really nuances of the work is it's not clear to me that we have evidence that it, that earlier, you know, earlier treatment improves long-term outcome, right?

We have good evidence, reasonably good evidence that it improves short-term outcome, okay?

But, you know, we have to be very humble about the science here I think.

And, you know, I'm not, you know, I'm not that worried about, like, I let other people worry about the neurotransmitters and the, you know, the hippocampus.

I'm worrying about the person in front of me.

- The person, you want to help the person.

- Right, and I love the hippocampus and I love all the, you know, that science, it's just not what I'm good at.

So, but what I, and so my focus is on trying to bring the best treatment to people whose lives sometimes are really, you know, going off the rails or they're having trouble.

But what we now call coordinated specialty care, it is a multidisciplinary multi-element approach to helping a young person experiencing this constellation of symptoms, helping them achieve their goals and be who they are.

And I would say the first thing that, and just so utterly important is the concept of hope.

If you're not hopeful, it's very hard to accomplish things.

And so we start out with the foundation that people can learn to manage these symptoms and this disorder that they're not, you know, relegated to a lifetime of disability.

So, you know, part of what we're trying to help people to do is to take responsibility, to own, to be in charge of, you know, themselves with, of course, family support.

That's extremely, extremely important.

So, so you have this sort of context, right?

A recovery orientation, a shared decision-making.

And remember we're dealing with young adults whose, you know, whose developmental challenge at this time is to become independent, you know, is to become who they are, to develop a vocation.

And so we need to support those impulses to the best, you know, to the best of our ability.

And so we have, you know, multiple team members, and I'm gonna start with peer support.

So what do we mean by peer support?

Coordinated specialty care teams and OnTrackNY teams have individuals with lived experience of illness, who work on the programs, who work as a part of the team.

And so they can speak from, you know, when what, what happened to them, the lessons they've learned, how to manage.

It's a very different, it's not a clinical relationship.

And then you have, so we'll start on the medical side.

So you do have, you know, a psychiatric clinician, can be a nurse practitioner, it can be a psychiatrist, and a nurse.

So a nurse who may bring sort of, you know, more of the medical management to the individual, whether that's healthy living, eating, exercise, et cetera.

And then you have what we call primary clinicians, or, you know, depending on the coordinated specialty care model, resiliency therapist, but individuals who might be a social worker or a psychologist who kind of are the main contact, I mean, it's a team-based model, but there's someone who's kind of the quarter, you know, the keeping everything together and being sort of the, the first point of contact.

And then very importantly, you have a supported employment and education specialist.

Again, this notion that we're, in trying to encourage and build in ongoing normative educational and/or occupational activities for that person.

So if the person's in college, you know, they stay in college or they make a choice to slow down and do fewer courses or they're working.

So this notion that we try to maintain the person's occupational and educational development, and that's what supported employment and education does, and it doesn't segregate the work and school outside of care.

It brings it in so that, oh, well if the young person is, you know, overly sedated from a medication and can't do well in a particular class or a job, well, then maybe we have to think about how the medication affects the person's life and functioning, and maybe we switch the medications.

Lastly, but certainly not leastly is family support.

So, you know, families and I, this is my own experience, you know, very confused, traumatized, scared, upset, and often not, don't know how to be helpful, because it's so confusing.

So, families and, you know, young people need, I mean, we all need our families, right?

But there's a pretty substantial and robust evidence base for the effectiveness of family psychoeducation and family support actually, and for, this is an old literature, but for reducing relapse rates.

So it's, which, you know, family psychoeducation, it's the research isn't just, oh, families do better, actually, there are lower rates of quote unquote relapse of the individual with the illness.

So helping families really in specific ways, giving them tools, knowledge, support, is very effective.

- I wanna sort of ask about an important issue, and you spoke a little bit about it in the decision-making process, but the issue of adherence to treatment to a treatment plan.

And could you tell us a little bit more about how you're able to engage a young person in the treatment?

- I can say what not to do.

- Okay, that's always helpful-- - "Here's your medicine, this is gonna help you!"

- [Jeff] Yeah.

- No, that is not how it should work.

The first thing is to find out what is important to that young person, right?

Whether it's their girlfriend or boyfriend or school or their rabbit, you know, dog, whatever it is, you know, their fashion sense.

You know, everybody, you know, we all have things that we, are important to us.

So the idea is to try to understand what's important to the person, and if that, if the symptoms or the illness are interfering with the individual's achievement of his or her own goals or their own goals, and that's how you connect, you connect with what's important to them.

When a young person develops some of these symptoms, the first thing that they do is not to wake up and say, "Oh, I think I need to go to coordinated specialty care."

You know, it's confusing, people don't even know what it is.

And, you know, we have a big community job to do, and I think hopefully this show here is, you know, contributes to that, is to help people understand what it is and be able to recognize it.

Not, you know, parents, but also teachers and ministers and nurses, and, you know, medical personnel who are not very well, you know, versed in psychiatry.

So we need to help people identify it.

- Let me ask you, because obviously you're very passionate about this and a part of that stems from your own family's experience.

What was it like for you at that point when your brother developed these symptoms?

- I'm trying to kind of answer the question in a way that, you know, like, there's sort of the specificity, well, I was kind of away and I was at college and yada, yada, yada, that, none of that, I think that the important thing is that it was terrifying.

And, and also, like, my brother, I come from a big family, you know, there's six kids and I'm the fifth and my brother is the fourth.

And so we were, you know, pretty connected growing up.

Like, it was, there were, like, three boys and one girl at the bottom of the family, and we played a lot of two on two, okay?

And I was always like, you know, basketball, and we also played bridge.

I mean, we did all these things and I was always paired with my brother, the one who developed this illness.

And so, and, you know, and he was always kind of a, in his own head in a little way, like, he was a little bit his own person.

And so, and that was, like, somewhat charming actually to me.

And so we were close growing up and it was, like, just, like, it was such a loss.

And subsequently, my, one of my sisters, my oldest sister had, it turned out that my brother had written her a number of letters early in his illness.

And the letters just were just heartbreaking.

Just heartbreaking.

Because you could, he talked, he spoke about how the turns that his life had taken, and you have to understand, he was a medical student when he got sick.

So he had, he was probably symptomatic and had somehow managed to get into medical school, and he wrote essays that, you know, with just this sort of generosity of spirit.

So, it was, and it was a very confusing time also because, you know, in a family, there's other things going on, right?

So as it turned out, at that point, my father died sort of right at when my brother was getting sick.

So we were all just upended and so when I think back on it, I just, I mean, I honestly, like, when I think back on it, and then you asked me about my current work with OnTrackNY and coordinated specialty care, you know, where my heart is, my North Star is that I don't want people to have to experience what we did, you know, in a very fundamental way, you know, to be alone, for a family to be alone with this was very difficult.

- You describe it so clearly, and obviously you lived through it.

And I think that the idea that hopefully other families don't have to go through this, because there is that support in place, is extremely hopeful for people.

If somebody's watching now, and either they themselves are experiencing symptoms of psychosis, or they believe that their loved one, their child is experiencing, what should they do?

What's the first step that you do if you are experiencing this?

- I would probably try at first just to learn, to read a little bit, you know, kind of educate, you know, there's so much information out there, you know, and if you think things are urgent or you're scared, that's a different matter, okay?

But if it's, you know, if you're, if there's not an, if there's an acute, if you feel like there's acute danger, like someone is threatening to hurt someone or hurting or hurt themselves.

- That's an emergency where you would want to get help right away.

- Yeah, but assuming that you don't see evidence of an emergency, I think, you know, try to learn, try to educate.

Again, there's a lot of stuff online.

If you're, if you want to explore, but, and the person that you're concerned about is not willing, you know, isn't, you get the sense that you can't go there with them.

You know, there are a lot of different help lines that one can call, you know, NAMI has, and we can call and maybe just talk it over.

Obviously, it depends if the person is below 18, you know, then, you know, you have the issue of parent and guardian.

If the person's above 18, then, you know, then you have a lot less control.

Knowing the resources in your local environment, which, again, there's not one way to do this.

- I think that's very good guidance.

There's no one path for any individual or family.

I agree with you, and I know you've been active in NAMI, that there are NAMIs located in communities throughout the country, and probably they would be a good resource to get some direction as to what's available in your own community from people who might have been through this already, and they could give support for individuals.

And I want to get back to really with what you started speaking about, which is the importance of hope.

And I'd like to you, as we wrap up, speak about hope for a family, for an individual in these circumstances.

- I think when we talk about hope in this case, we're not just talking about hope of a particular accomplishment, but hope about one's life.

I am very lucky to have, to have found myself in this space where this was all erupting, okay?

Where, you know, if you think about, so, you know, the whole notion of early psychosis care is to get people off to a good start, right?

And to keep them moving forward.

- Well, I think your guidance is extremely important and I want to thank you, Lisa, for joining us today and more importantly, for what you've done.

You wear your heart on your sleeve in a way that is just so inspiring.

And I want to thank you for all that you do.

- Well, thank you very much.

And I'm grateful to those who gave us hope over the years as well.

(gentle music) - If you are experiencing an episode of psychosis, don't experience this alone.

Reach out, get help, make use of support from your family, friends, religious institutions, professionals, but don't experience it alone.

Don't suffer in silence.

Remember, with help, there is hope.

This program is brought to you in part by the American Psychiatric Association Foundation and the John & Polly Sparks Foundation.

(gentle music) (gentle music continues)