New Caregiver Helpline

Peer-to-peer service supports family caregivers facing a loved one’s mental illness

Jessica Sabatini remembers the emotional upheaval her family faced when her brother was diagnosed with schizophrenia several years ago. Today, she draws on that experience to support others through a new caregiver-to-caregiver helpline specifically for people caring for a loved one with mental illness. The National Alliance on Mental Illness (NAMI) runs the helpline, which launched nationwide in November.

“It’s hard for the person who received the diagnosis, and it’s hard for the family caregivers as well,” Sabatini says. “At the end of the day, people don’t just want to hear technical information about the brain. They want to talk to people on a personal level. I want to let them know they’re doing great.”

People can reach the helpline Monday through Friday, from 10 a.m. to 10 p.m. eastern time. Call 1-800-950-NAMI (6264), and press 4 to connect with a family caregiver specialist.

The helpline is responding to a clear need. An estimated 1 in 5 people in the U.S. has mental illness, according to the National Institute of Mental Health. That amounted to nearly 60 million people in the U.S. in 2022. Within that group, more than 15 million people over age 18 had a serious mental illness in 2022. This category includes bipolar disorder, treatment-resistant depression, and psychotic disorders such as schizophrenia.

While the mental health crisis line 988 has existed since 2022, this new helpline focuses specifically on caregivers of people experiencing mental illness. Megan Rochford, NAMI’s helpline operations director, says caregiving for someone with serious mental illness presents unique challenges because symptoms often remain hidden or unrecognized for years. Mental health disorders are commonly stigmatized, too.

“Schizophrenia often has a prodromal [early, subtle] phase that can go on for years,” Rochford says. “A young person can merely look depressed — then maybe they stop caring for themselves, showering or grooming, they withdraw from family and friends, seem less interested in school or work.”

When family members recognize those early warning signs, Rochford says, they may be able to connect their loved one with an early program. But it’s not always easy.

“It’s not something you learn in health class,” Rochford says of mental illnesses. “There’s always a first time for a family to have to ‘think’ about mental illness. People often think, ‘This will never happen to us.’ So you don’t always know what to look out for, or what steps to take.”

There’s even a clinical term for a person’s inability to recognize their own mental health condition: anosognosia.

Choosing help

Sabatini, a neuroscience student at DePaul University, began volunteering with NAMI over the summer and now serves on its helpline, which has provided specialized support to more than 1,000 family caregivers since its launch in November.

“It’s a great experience,” Sabatini says. “It’s the most organized volunteer experience I’ve had. Everyone is so supportive. We call the clients ‘help seekers.’”

Those help seekers include parents and family members grappling with a diagnosis for the first time, as well as longtime caregivers who want to try something new or simply talk to someone.

Dawn Brown, national director of NAMI’s helpline services, says her own entry into caregiving happened abruptly when her son experienced a severe psychotic break related to schizophrenia.

“There was no slow roll with this one,” Brown says. “My son was immersed in hallucinations and became catatonic. He didn’t move or speak for a long period of time. It was alarming.”

Brown says connecting with NAMI made “all the difference” in learning how to support her son and cope herself. Like many involved with the helpline, that experience motivated her to give back.

“Relationships can become quite strained,” Brown says. “You have to support someone emotionally, financially, be their ad hoc treatment team. This is often a lifelong role that you’re involved in. It can be very daunting.”

The NAMI Family Caregiver Helpline operates with about 170 volunteers each week. It serves anyone involved in the care of a person with mental illness, including parents, siblings, and other relatives.

In addition to peer support, helpline volunteers connect callers with treatment options, local services, and NAMI’s library of articles and research.

The helpline also works to counter common misconceptions, among them the belief that people with mental illness are inherently dangerous.

Peer support makes a difference, Brown says. That includes for her own family.

“My son is 42 now, and he’s a regular middle-aged guy,” she says. “He has a job. He’s around for the holidays, he comes home every week. He has a life of his own that he finds fulfilling.”

Brown celebrates his successes. “I’m so proud of him and what he’s achieved. This is the outcome we want everyone to leave with.”