Families of people with serious mental illness wear many hats. They are often the ones scheduling their loved ones’ medical appointments, wrangling insurance, shuttling groceries and helping with other daily decision-making.
For people experiencing symptoms of psychosis or a psychotic disorder like schizophrenia, it can be especially difficult for caregivers to shoulder these responsibilities.
People with psychosis have a heightened risk of suicide and suicide attempt, and although recovery is possible, it’s often a long and difficult road. Psychosis includes a constellation of symptoms that makes it hard for a person to know what’s real and what’s not. Caregivers might struggle to know how to respond when their loved one expresses a delusion or that they’re hearing voices. Family bonds might break. Trust might dissolve. Offers of help might be rejected, or go unanswered.
About 3% of people will experience a psychotic episode at some point in their lifetime, but researchers and physicians don’t yet have a clear understanding of why some people relapse and others don’t. Because of this, there’s been a push from the medical community over the past decade to intervene as early as possible, said Sarah Kopelovich, a clinical psychologist and associate professor at UW Medicine. And there’s a focus on bringing in care from all corners: psychiatrists, case managers, therapists, primary care doctors — and family members.
Family education is common for certain physical health conditions like diabetes, “And yet, we don’t do that with chronic episodic mental health conditions,” Kopelovich said. “We need those family interventions on board.”
In 2017, Kopelovich heard about a U.K. psychiatrist named Dr. Douglas Turkington who was teaching lessons from a talk therapy called cognitive behavioral therapy to family members of those with psychosis. She got in touch. The idea fit with her personal mission to train community members how to intervene when they notice someone is struggling. By May 2019, they launched a family training program called Psychosis REACH in Seattle and trained about 250 families here. To date, they and their colleagues have trained about 1,000 people in seven countries.
November is National Family Caregivers Month. The Seattle Times spoke with Kopelovich about myths and facts related to psychosis, and about the importance of engaging families and caregivers in treatment. This conversation has been lightly edited for length and clarity.
What are common symptoms of psychosis?
Psychotic symptoms can be lumped into two categories. One is called positive symptoms because they are in addition to a typical experience. [Someone] will see things that other people don’t see, hear things that other people aren’t able to hear. [They might] experience distortions and might have very bizarre beliefs that are not accepted by other people.
The other set of psychotic symptoms are called negative symptoms because they are the absence of typical experience. People who experience negative symptoms have a lot of difficulty with expressing emotion — verbally [and] nonverbally — and they have a lot of difficulty with speech and initiating tasks like getting out of bed, getting in the shower, doing the dishes.
During a psychotic episode we will often see changes in mood, and then sensitivity to perceptual experiences, like light and sound. There’s all this information coming in and it becomes overwhelming for them. They’re trying to make sense of all these incoming stimuli and they might start to make meaning out of coincidences.
What does typical treatment for psychosis look like?
Within our recent history, schizophrenia has been treated predominantly with antipsychotic medications. And then, responsive case management, meaning they’re addressing needs such as housing, disability or other social benefits. Doing the things that will keep them in the community and are critical to their recovery but are not addressing the psychological factors or skill deficits that will help someone thrive. The outcomes we’ve achieved through that model of care have not been great.
What role does connection play in recovery?
There’s some misconception that people with psychosis are hostile or potentially violent. More often than not, they’re scared that other people mean to do them harm. And so they build a wall around themselves.
Having a serious mental illness is incredibly isolating, incredibly lonely. We need to get people reconnected, which is where therapy and families can play a huge role.
Why is it important to include family members in care?
It’s really difficult for me to overstate how influential integrating families into our care of individuals with serious mental illness is. We see better adherence and engagement with treatment. We see reductions in rates of relapse of mood and psychotic episodes. We see fewer hospital admissions, or if they are admitted, we’ll see shorter inpatient stays. We see better work performance, better quality of life, reduced substance use.
What are the goals of Psychosis REACH?
We want to share with [families] what the empirical literature actually has to say about psychosis [in a way] that gives them cause for optimism and hope.
Then, we want to teach them that cognitive behavioral therapy is just as much for themselves as it is helpful for their loved ones. And so we want to teach them how CBT can help with their own burnout, their own exhaustion, their own anxiety, and that when they can start using these skills on themselves, they’ll be more effective.
We will also model how the skills should look. There’s one meta goal that we have which is to help loved ones understand that CBT should be [the] standard of care for their loved one.
[During training] people would stop me on breaks and say, “I can’t believe this, I heard that you can’t do therapy, talk therapy doesn’t work for psychosis.” Or, “I never knew these things about psychosis before. I never knew recovery was possible.”
What skills do families learn during Psychosis REACH training?
We know medications are often a really important component of recovery, but I also want families to be thinking about the way they communicate and the role they play with their loved one. Just like with antipsychotics, it takes time to work into the system. The same is true with these interventions. But it doesn’t make them any less potent.
[Families learn] communication skills, such as how do I communicate with my loved one around very challenging topics like medication, substances, unshared beliefs, voices.
The second set of skills are problem-solving skills. How do I break these big problems down into smaller, more manageable challenges that we can work on together.
And then the third set of skills are coping skills, so, how can I help my loved one feel less distressed or disabled by the voices.