Caregivers of people with schizophrenia in the United States spend an average of $1,810 a month of their own money on costs nobody reimburses.
That figure comes from a survey of 200 unpaid caregivers, published in Psychiatric Research & Clinical Practice. The Schizophrenia & Psychosis Action Alliance led the study with Blue Persimmon Group and Precision AQ. Data were collected online between December 2021 and January 2022.
Some 87% of those surveyed said they paid out of pocket, for mental health treatment, housing, medications and even property damage. More than 80% reported at least one significant life event in the past year, which added an average $3,909 in annual costs. Psychiatric hospitalizations and medical care were the most common items, along with education and employment support and legal services.
Time and wages
Caregivers gave an average of 36 hours of care a week, close to a second job. Many paid for it in their careers. Lost wages were reported by 58%, reduced work hours by 38% and unpaid leave by 30%. Some left the workforce entirely. Others put off education or missed promotions.
On the Burden Assessment Scale, 79% met the criteria for “high burden.” The researchers tied that to how severe the symptoms were, and to suicide attempts and substance use treatment needs of the person being cared for. Caregivers who lived with their relative, or looked after someone with more severe symptoms, carried the heaviest costs. One in three said COVID-19 added to their responsibilities.
“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,” said lead investigator Melissa Culhane Maravic, PhD.
The authors called for targeted financial relief for families, more caregiver mental health and peer support programs, and a place for caregiver needs in clinical treatment planning. They also urged policy changes to ease long-term economic strain.
