When Caregiving Becomes a Second Job—Without Pay

A study published in Psychiatry Online reveals the financial and humanistic toll borne by informal caregivers of individuals with schizophrenia in the United States. The authors characterized a high level of humanistic and financial burden among unpaid caregivers in the United States, concluding that clinicians must offer resources to mitigate these impacts as a crucial step toward supporting patient recovery.

Caregivers provide an average of 36 hours of support per week, in addition to incurring out-of-pocket expenses. On average, caregivers spend $1,810 per month on everyday needs and nearly $4,000 annually on significant life events such as psychiatric hospitalizations, substance use treatment, or legal matters. Approximately four in five caregivers met criteria for high burden according to the Burden Assessment Scale, indicating a substantial influence of caregiving responsibilities on quality of life.

About 1.2% of individuals in the United States have schizophrenia, which is linked to hallucinations, delusions, cognitive impairment, and a reduction in function. Because the disorder is long-lasting and challenges exist for accessing services, many patients depend on informal caregivers for basic requirements, including housing, transportation, and care coordination. Families often cover important gaps in housing, transportation, and managing symptoms because of this.

Previous studies frequently lacked thorough data elucidating both the humanistic and financial hardships unique to schizophrenia caregivers, particularly for out-of-pocket (OOP) expenses and encounters with unanticipated significant life events (SLEs). This work sought to address that deficiency.

Holly Krasa, M.S., CEO and founder of the Blue Persimmon Group, conducted a cross-sectional, web-based survey of 200 unpaid caregivers of adults with schizophrenia or schizoaffective disorder. Participants, sourced nationally via survey panels and advocacy organizations, answered as many as 119 questions regarding demographics, caregiving duties, out-of-pocket expenses, major life events, and emotional hardship. The Burden Assessment Scale was employed to measure emotional and social effects. Statistical analyses investigated determinants of significant financial and humanistic stress, encompassing housing arrangements, symptom severity, and the incidence of significant life events.

In the survey, 87% of caregivers said they had to pay for things out of their own pockets that weren’t covered by insurance. The most expensive were mental health treatment ($767 monthly), property damage ($728), housing ($670), and medication ($664). Even caregivers who made less than $35,000 a year said they spent an average of $1,182 a month on care.

In the past year, 84% of people who received care had at least one significant life event, with psychiatric hospitalization being the most common (64.5%). The average yearly cost of out-of-pocket costs was $3,909, with legal services and hospital stays being two of the most expensive. Almost 80% of caregivers had a high-burden score. Living with the person receiving care, having more severe symptoms, and going through crises such as suicide attempts or substance use treatment were all signs of a higher burden.

More than half of caregivers said they had lost pay, 39% said their hours were cut, and 30% said they had to take a leave of absence. Many people also missed social events, skipped vacations, or put off personal ambitions.

The authors stress that taking care of someone with schizophrenia takes a lot of emotional and financial resources, and they typically don’t get enough help. They suggest that doctors should aggressively link caregivers with resources such as mental health services, financial aid programs, and training for caregivers. The findings at the policy level indicate the necessity for caregiver support programs financed by the federal and state governments to help with costs and prevent burnout. They say that including caregiver support in treatment planning is important for both the caregiver’s health and the patient's recovery and long-term results.

The findings underscore the critical necessity for systemic initiatives that acknowledge and bolster the essential role of caregivers in maintaining patient care.