How to Build a Support Network for Schizophrenia Care
“Many caregivers face uncertainty about the future, not just for their loved one, but for themselves,” says Christine Crawford, MD, MPH, associate medical director at the National Alliance on Mental Illness (NAMI).
“All their expectations around work and relationships often change after a schizophrenia diagnosis. It’s a time of major adjustment.”
However, there are valuable resources and support available to help during this transition. The key is being open to seeking help and knowing where to find it.
Education About Schizophrenia Caregiving
A good starting point could be a visit to a public or medical school library, or exploring the websites of mental health and caregiving organizations. Some helpful resources include:
- The Schizophrenia & Psychosis Action Alliance, which offers printed materials, videos, presentations, and a caregiver toolkit.
- NAMI (National Alliance on Mental Illness), which provides videos and materials on schizophrenia, the “NAMI Family-to-Family Program” on YouTube, a helpline, and online discussion groups.
- The Family Caregiver Alliance, which offers resources on caregiving more broadly.
Crawford advises not to stop at reading materials. If your loved one consents, accompany them to doctor visits to learn more about their treatment plan and build a connection with their mental health provider.
Additionally, instead of making assumptions, engage your loved one directly. Ask about their symptoms, feelings, experiences, and goals.
“Rather than questioning the reality of their symptoms, explore how they experience schizophrenia and their emotional responses,” Crawford suggests. “Caregivers can often learn more from their loved ones than from a book.”
Getting Help From Family and Friends
Many primary caregivers for individuals with schizophrenia often feel guilty about not being able to manage everything alone. However, overcoming the hesitation to ask for help can reveal valuable support from others.
Here are some ways friends and family can assist:
- Respite care: Giving you time to recharge—whether that’s going to the gym, seeing a movie, or taking a peaceful walk.
- Running errands, like grocery shopping.
- Driving your loved one to doctor’s appointments or picking up your kids from school.
- Paying household bills.
- Doing online research into financial assistance programs for families dealing with schizophrenia.
“I suggest caregivers make a list of everything they struggle to get done in a week and then ask family or friends if they can take on any of those tasks,” says Christine Crawford, MD, MPH.
That said, it can be difficult for friends and family to stay consistent through the toughest moments of schizophrenia care.
Deborah Fabos, from Tehachapi, CA, has been caring for her son since his diagnosis in 2000 when he was 17. While some relatives helped initially, she found it challenging to get the long-term support she needed to balance her son’s care and her own life.
“Family and friends can be priceless if they can sit with your loved one and provide comfort,” Fabos says. “But unless they’ve experienced situations like anosognosia (when someone denies they’re ill), true empathy can be hard to find. They don’t fully grasp the spectrum of challenges.”
Even if family and friends struggle with their own preconceptions about schizophrenia, Crawford encourages caregivers to still ask for help. “They may grow to understand and be able to support you better in the future.”
Find a Caregiver Support Group
Over time, Deborah Fabos became a volunteer and speaker for schizophrenia-related causes. She recently helped establish a chapter of the Schizophrenia & Psychosis Action Alliance (S&PAA) in her home county and launched a caregiver support group called Families For Care, which now has over 800 members worldwide.
“Joining a support group is the biggest lesson I’ve learned,” Fabos says. “The right group provides access to the resources you need. Even if someone hasn’t been through your exact experience, they’ve likely been through something similar.”
In Fabos’s group, caregivers not only find a safe space to share their experiences but often receive practical help with daily tasks from nearby members.
To find a local support group, you can:
- Register through S&PAA
- Use the NAMI Connection support group search engine
- Connect through Mental Health America’s Inspire schizophrenia board
Christine Crawford, MD, MPH, emphasizes that even if you have strong family and friend support, it’s beneficial to join a caregiver support group.
“If you hit a rough patch with your loved one, the group can encourage you by saying, ‘I know it’s hard now, but keep going. It worked for me, and I believe it can work for you,’” Crawford says.
“And if the first group you join isn’t the right fit, don’t hesitate to look for another. Finding the right group can take time, and there’s no one-size-fits-all solution.”
