Quantifying the Societal Impacts of Schizophrenia: A Survey of Caregivers

To characterize humanistic and financial burden associated with caregiving for people with schizophrenia in the United States.

Unpaid caregivers (n = 200) of adults with schizophrenia or schizoaffective disorder completed an online survey. Caregiver impacts were determined by quantifying out-of-pocket (OOP) costs for care recipient everyday needs and significant life events (SLEs), humanistic burden assessed by the Burden Assessment Scale, and career, educational, and personal impacts that result from caregiving.

Caregivers were 42.3 ± 13.4 years old, with 54.0% of identifying as male, 65.5% as white, 24.5% as Black or African American, and 11.0% as Hispanic or Latino/a. Caregivers reported providing 36.1 ± 33 h of care per week. Per caregiver report, care recipients had experienced two SLEs in the past year, most frequently including psychiatric hospitalization (64.5%), education and employment support (32.0%), and substance use treatment (28.0%).Caregivers reported paying OOP to support SLEs (average annual costs ranged from $1068 to $2395 across categories). Caregivers also reported additional monthly OOP costs of $1809 for everyday needs. The highest monthly costs included mental health treatment ($767), property damage ($728), housing ($670), and medication ($664). Individuals with schizophrenia residing in the caregiver's home and at least one SLE in the past year were associated with significantly higher monthly OOP spending (p < 0.05).

The demands of caregiving for individuals with schizophrenia require additional emotional and financial resources. Clinicians should offer resources to mitigate impacts of caregiver burden as an important approach to support patient recovery.