SEATTLE, Washington – Experts in the field of psychiatry say there's very little support or education for families or caregivers.
Luis Viquez' partner, Arturo, was diagnosed with schizophrenia 20 years ago.
As a caretaker, it was trial by fire.
"I wish I had some of the skills then that I have now to help a little better. but I just didn't know," said Luis.
225-family members and loved ones of patients with psychosis heard facts about it and ways to help at a unique treatment session at the University of Washington.
"We coached them in how to talk to the individual that they love so that they're really communicating with their loved one, and not their symptoms," explained Sarah Kopelovich, assistant professor of Cognitive Behavioral Therapy for Psychosis at the University.
More than 3.5 million Americans have been diagnosed with schizophrenia. Every year, 100,000 more have their first psychotic episode.
Experts tell family members to:
- Keep their statements short, simple and clear
- Speak in a calm voice
- Give the person physical space rather crowding them
- Avoid challenging them over the delusions
"Psychosis can be a very isolating experience, in part because other people don't share that individual's reality, and in part because people just don't know how to interact with them," said Kopelovich.
"You can imagine how profound it is when you can talk to them about their interests or it's OK to talk about the voices or to explore these beliefs that you're not on the same page about."
The sessions focused on cognitive behavioral therapy, which has been effective in combination with medications and social support.
"So if family members and treatment providers and peers can all be speaking the same language, can all be using the same kinds of strategies then we're going to be that much more effective at helping people recover," said Kopelovich.
HelpGuide.org lays out seven main points to follow:
- Take care of yourself
- Build your support network
- Encourage treatment and self-help
- Monitor medication
- Watch for signs of relapse
- Prepare for crisis situations
- Explore housing options
Living with family works best if the person with schizophrenia functions at a fairly high level, can maintain friendships, is involved in activities outside the home, the interaction among family members is relaxed, the person with schizophrenia intends to take advantage of available support services and the living situation does not negatively impact the lives of any young children in the home
Luis says it helps a lot to get tools on how to listen and talk to Arturo.
"This training gives you a glimpse of a sort of like a ray of light where you can actually say, 'OK, maybe this is where you're coming from'."
Kopelovich says there are more than one person who needs attention in such a relationship. The caretaker needs help too.
"We gave them some information about coping skills so how to coach their loved one to cope better with the experience of voices or delusions, and then we talked about self-care - how important it is to take care of yourself in this process," she said.
The University of Washington is seeking funding for a second training in or around Seattle and more across the country.
If this story has impacted your life or prompted you or someone you know to seek or change treatments, please let us know by contacting Jim Mertens at email@example.com or Marjorie Bekaert Thomas at firstname.lastname@example.org.