Early Intervention for Psychosis: Building a Mental Health Community | Rachel Waford | TEDxDecatur
Articles,  Blog

Early Intervention for Psychosis: Building a Mental Health Community | Rachel Waford | TEDxDecatur

Translator: Daniel Enger
Reviewer: Tanya Cushman So as psychologists and counselors,
we spend quite a lot of time and energy trying to create spaces
that are open and accepting and safe. Now, that doesn’t keep people from feeling
really apprehensive to visit our spaces to share examples
of challenge and distress. This is especially true for individuals
experiencing psychotic illnesses like schizophrenia, and in particular, young people who are experiencing
psychotic symptoms for the first time. At best, psychotic systems are confusing. And at worst, they are terrifying. So for a young person, coming into the office
of someone that you don’t know and describing that you’re hearing voices
saying nasty things about you or telling you to hurt yourself, or explaining that
the FBI is following you or that your parents
are poisoning your food – this can feel really threatening. By the time young people
do get to the office of myself or other colleagues
who specialize in this area, I feel confident
that we can be really helpful. There are gold-standard treatments
for psychosis that work. They’re effective:
young people get better. But that’s just it. Getting to our offices is not easy. A confusing mental health system, stigma, fear, these all create barriers to be scaled, in addition to the experiences
that these young people are having. By the time folks do get to my office, they’ve often been through
a really harrowing journey. They’ve experienced a traumatic
psychiatric hospitalization. They’ve seen multiple doctors
and tried multiple treatments while they try to figure out
what’s going on. Or they’ve suffered through a persistent
psychotic episode without treatment while they hope
it will get better on its own and they and their families pray
that it’s not what they think it is. Now, there’s a critical time,
a critical window, after the onset of the first
symptoms of psychosis where we want to initiate
treatment as early as possible for the greatest impact. It’s during this time
that we need a lot of help because that window that’s so critical,
that can take months. It takes way too long for young people
experiencing psychosis to get connected
to early and effective treatment. And that’s what a lot of my work
has been focused on – trying to hasten, ease that process
of getting connected to treatment. I know that there are people
in the lives of young people that could assist us in this, and I want to talk to you
about these perfectly placed candidates that we’d like to recruit
to join our mental health community. Before I talk to you
about these individuals, I want to share more about psychosis so you have a better understanding
of these experiences. Now, most of us are aware
of the reputation of psychosis, from news and media. In reality, psychosis is characterized by false sensory experiences,
or hallucinations; false belief systems, or delusions; a limited experience of things
like motivation and pleasure; disorganized thinking and behavior; and cognitive impairments. Psychosis is found in every culture
around the world, and there’s often a genetic component. The typical age of onset
for psychosis is 16 to 24. So if you’re sitting here thinking, “That’s a really busy time;
a lot of other things are happening,” you’re right. Young people are trying to figure out
who they are, who they want to be. They’re forming really strong friendships,
and they’re planning for their futures. You can think of a psychotic episode
like a traumatic brain injury. It is very disruptive
to many of the brain’s core processes: communication, regulation of mood and behavior, reality testing, problem solving, decision making. So these disruptions occurring
during this critical time in development, they have significant implications
for the future of a young person in this situation. The longer a psychotic episode
persists without treatment, the longer and more arduous the recovery. And yes, I did say recovery. There is recovery from these experiences. What’s challenging about these experiences
for young people is the consequences. The consequences of untreated
psychotic illness are severe. People often have an increased number
of psychiatric hospitalizations. They’re more likely to have
medical comorbidities, like heart disease and diabetes. They’re more likely to have
involvements with the legal system, drug use and homelessness. Because of these things,
young people often have to disengage from work and school
and their friendships. The evidence for treatment
is fortunately robust. Young people get better. With early, effective treatment,
they return to work and school. They reengage in their relationships. They make plans for the future,
and they achieve them. And I know because I’ve seen it,
and it’s really, really incredible. So the aim is to initiate treatment
in the earliest sign of symptoms to minimize the impact
of a psychotic episode. You may remember
me telling you a moment ago that recovery is real
and young people get better. You might also remember me telling you that getting connected to effective
treatment is a real challenge. And hopefully,
you’ll remember me telling you about these perfectly placed candidates
who really can assist us. While psychosis shows up during
a really vulnerable time in development, this stage is also rich
in its potential for recovery because young people
are plugged into systems in really consistent
and predictable ways. They’re at school every day. They’re at work in the evenings. They’re at soccer practice
or theater practice in the afternoons. They’re at synagogue on Friday
or church on Sunday. And they’re at their friends’ houses
everywhere in between. This is huge for early intervention because what that means is young people are embedded in systems
where they can be observed over time. There are people who are present
who can notice shifts that occur. They can notice if these shifts
appear to be maintaining compared to these random fluctuations
that happen in adolescence that we’ve all experienced in here. And they can notice if these shifts
that appear to be maintaining are also causing problems
or causing distress. The people that are embedded
in these systems are who my colleague, Dr. Carina Iati,
and I like to call “first responders.” This term is typically reserved
for our emergency medical professionals, but the folks that I want
to talk to you more about because of their role and responsibility
in the lives of young people, all are likely to be on the front lines
of an emergency – a psychiatric emergency. With the right tools, these individuals
could really help us and assist us in identifying the earliest signs
of psychiatric and psychotic illness. These folks are also unique in that they’re more likely to have established relationships
with young people and already been seen
as helpers in some sense. Who are these first responders? They’re teachers. They’re coaches. They’re faith leaders. They are community leaders. They’re local law enforcement. They’re parents. Most of these people
don’t have any mental health training. In fact, if you ask them,
they would probably say, “I don’t feel comfortable
or confident or competent to assist anyone
toward mental health treatment or to step up during
a psychiatric crisis.” Yet these people have
such a unique opportunity to be present when something
like this is happening. They can help us identify
early warning signs. They can lean on their already
established relationships to have tough conversations about
concerning symptoms and behaviors, and they can provide ongoing support. The overall goal is to create
a broader mental health community where we have more people
who are participating – people who wouldn’t think
they have anything to offer to a mental health community or that this is a community for them, that they don’t have
any connection with it. First responders are a group of people
that we really want to add in, with something important to offer. Now, I want to tell you how we do this,
and there are three important steps. The first step is shoring up investment
and demonstrating the opportunity. Most of these first responders
aren’t going to have any idea of what they have to offer
in terms of mental health. We want to share
that information with them. We also want to let them know
about the consequences, the really significant consequences
of delayed or untreated psychosis for individuals, for families
and for communities. We also want them to be aware
of the enormous potential that comes with recovery. The hope is that with this information,
they will invest even more in the mental health of the young people
that they’re already serving. The second step is to arm these folks
with information, education and training. These early warning signs
I’ve talked about, we want them to have information
about those things – warning signs about, like,
confusing speech, unusual thinking, paranoid ideas, changes in performance,
mood or cognition. We also want them to be aware of
the many verbal communication strategies that are most likely to be helpful during psychiatric crisis
or a psychotic episode. Things like simple, clear and direct
questions and statements, and nonverbal communication
strategies like personal space. We also want them to be aware
of ineffective communication strategies that aren’t likely to be helpful
during a psychotic episode, like challenging
hallucinations and delusions, that what they’re experiencing isn’t real. We also want these folks to know about the variety of approaches
they could utilize to assist someone, based on their comfort level. There are so many right ways
to step up and initiate this, everything from just sitting
and being present and listening to having a tough conversation, something like, “Here’s what I’m noticing.
Here’s why it worries me. And I think it might be time
to ask someone for help.” It’s not the responsibility
of first responders to make treatment happen. We just ask that they
invest in the process, they plant a seed, and they take a step. It’s also not their responsibility to diagnose; we’re just asking them to observe. The third step is creating
agents of change. The more people we have involved
in our mental health community, the greater impact that we can have
overall for everyone in this community. The more we’re talking
about mental health, the better able we are to destigmatize
these kinds of experiences and normalize the stress
and normalize seeking help. One of our biggest issues
in mental health is silence and fear. When we don’t talk about it,
we don’t do anything about it. Now, I have no doubt there are many
really empathic people here who are thinking, “I’m not like a first responder per se,
but I would like to do something to help.” Well, that’s great –
we want to invite you as well. We want this to be a big community, beyond just individuals
with lived experience and their family members
and their providers, like me. And there are two things
that you can do today that would be really helpful. The first thing is arm yourself
with information. You can go to websites
like nami.org or [nimh.nih.gov], where they talk a lot about mental health. If you want to be more actively involved
in the way I’ve been describing, you can sign up
for mental health first aid, where you can get training on how to identify these early warning
signs and how to initiate steps for help. The second thing that you
could do, starting today, and this is very, very important, and it’s something that, as a clinician,
I am actively practicing every day, and that is to choose your words
really wisely and carefully. Language is very powerful,
and it’s very meaningful, and we use words like “psychotic,”
“crazy,” “insane” all too often. We’re using these words in situations
where we’re sending negative messages about experiences
associated with these words. We can extend this to things like,
“Oh my god, I’m so OCD!” or “Did you see her today?
She was so bipolar.” When we use words like that,
we’re sending messages that say, “I don’t want to be that.” We want to be inclusive with our words,
not isolating or ostracizing. The way we talk about mental health
impacts how we treat mental health. So I want to thank you all in advance
for your all’s help with that. In summary, the goal is to create
a broader mental health community where we have more people invested in and advocating for
individuals with lived experience. We want to do this for everyone –
don’t get me wrong – everyone with lived experience
we want to be serving and supporting. But I’m talking about
psychosis specifically today because psychosis really is unique. It’s unique in its reputation, which impacts how we think
about individuals with these illnesses and how we treat them. It’s also unique in the severity
of the consequences of these symptoms when they go untreated and the impact they have
on young people’s lives. And it’s also significant in the size of
the potential that there is for recovery. Psychosis shows up during
this really critical time in development, and it can be really, really disruptive. There are people that are present
during this time who can assist us in making a difference
in how this looks for young people. With the right tools, these individuals
can be active participants in helping young people seek treatment. The more people that we have
invested and involved in a broader mental
health community overall, the better able we are
to destigmatize mental illnesses, to dispel myths about mental health and to demystify illnesses like psychosis. In turn, and most importantly, the more people
that we have participating, the better able we are to provide
these young people with better access to the lives that they and their families
have been dreaming of. So thank you. (Applause)


  • Allison Walford

    Hi Rachel, I am Ron’s daughter and also in the Psych field. This was very interesting, thanks for sharing it! I am currently working with patients who have eating disorders as well as co-morbid diagnoses and they also desperately need community support! -Allison

  • Psychosehulp Albert

    I agree that young people need to get more information and awareness about psychosis. I even think that this subject, and similar subjects should be a part of general education. Why not teach this in schools as a part of the main curriculum? Why depend on volunteers to spot for early signals. Why would 16 to 24 year old choose to educate themselves in this subject? I'd recon they do not have the responsibility yet, to choose to do something that is depressing, and that they barely understand.. I would suggest to make psychology a mandatory course in every high school around the world. That would solve these problems and many similar problems like this.

  • Lauren Elizabeth

    I went to two psychologists with very psychotic symptoms (but mild) and neither of them noticed it had psychosis. I went untreated for a year and a half. They both have this idea that psychosis means that you are going to be a rambling mess that is unable to hold a conversation. That is simply not always the case.

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