New Study Reveals Enormous Financial and Emotional Costs Carried by Caregivers of People With Schizophrenia

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Informal caregivers of individuals living with schizophrenia shoulder staggering financial, emotional, and personal burdens, according to a newly published study in Psychiatric Research & Clinical Practice. The study, led by the Schizophrenia & Psychosis Action Alliance (S&PAA) in partnership with Blue Persimmon Group and Precision AQ, is among the most detailed examinations to date of the hidden costs borne by families.

Surveying 200 unpaid caregivers across the United States, researchers found:

• Financial strain is severe and ongoing. Nearly 9 in 10 caregivers (87%) reported spending their own money, averaging $1,810 per month on unreimbursed expenses such as mental health treatment, housing, medications, and even property damage.
• Crisis costs compound the burden. More than 80% reported at least one significant life event in the past year, with an additional $3,909 in average annual costs, most often for psychiatric hospitalizations, medical care, , and education and employment support and legal support services.
• Caregiving demands equal a second job. Caregivers provided an average of 36 hours of care each week
• High levels of emotional burden. On the Burden Assessment Scale, 79% of caregivers met criteria for “high burden”, linked to the severity of symptoms, suicide attempts, and substance use treatment needs of their loved one.
• Personal sacrifices ripple across careers and families. Caregivers reported lost wages (58%), reduced work hours (38%), taking unpaid leave (30%), and in some cases leaving the workforce entirely. Many postponed education, missed promotions, and reported strained social and family relationships.

“These findings shine a light on what families have long known but what society has too often overlooked—that schizophrenia doesn’t just impact the individual diagnosed, it reshapes the lives and livelihoods of their loved ones,” said lead investigator, Melissa Culhane Maravic, PhD. “Caregivers are the invisible backbone of the mental health system, and they urgently need policies and supports that recognize their contributions and relieve their burdens.”

The study also found that caregivers living with the person they support, or caring for someone with more severe symptoms, bore the highest costs and burdens. COVID-19 intensified challenges for one in three caregivers, who reported increased responsibilities during the pandemic.

Policy and Clinical Implications
The research underscores the urgent need for:
• Targeted financial support and relief for families.
• Expanded caregiver mental health and peer support programs.
• Greater integration of caregiver needs into clinical treatment planning.
• Policy reforms to reduce long-term economic strain and improve quality of life.

About the Study
The article, Quantifying the Societal Impacts of Schizophrenia: A Survey of Caregivers, is published in Psychiatric Research & Clinical Practice. Data were collected via a cross-sectional, web-based survey of unpaid US caregivers between December 2021 and January 2022.