Survey: Schizophrenia Caregivers Feel Significant Burden

Survey: Schizophrenia Caregivers Feel Significant Burden
Survey: Schizophrenia Caregivers Feel Significant Burden

Janssen announced the results of "A Large-Scale Survey of Caregivers of Persons with Schizophrenia and/or Schizoaffective Disorder Designed to Identify Unmet Needs" that indicated caregiving was a significant burden and caregivers lacked adequate support and assistance. 

The cross-sectional, web-based questionnaire assessed a community sample of 1,149 responses on the burden of caregiving for patients with schizophrenia and/or schizoaffective disorder. The survey included any person self-identifying as a caregiver of a person diagnosed with schizophrenia and/or schizoaffective disorder; providing unpaid help to a relative or friend or arranging for help in the past 12 months, such as household chores, finances, and/or personal medical needs; and the ability to read and speak English.

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Major survey findings included:

  • Majority of caregivers reported assisting with activities of daily living on a weekly basis or more often. Specifically, 61% assisted with finances, 59% assisted with meals, and 54% assisted with social activities.

  • Most caregivers (63%) reported not being able to find substitute caregivers when needed.

  • More than half of the caregivers (60%) reported having little to no information to guide them in their responsibilities, including financial (66%), legal advice (65%), community services (62%) or medical advice (49%).

  • At least 40% of caregivers were involved in managing difficult behaviors and ≥10% were involved in monitoring for violent or self-destructive behaviors.

  • Over one-third (38%) reported being extremely or very concerned about medication adherence, and 30% also expressed lack of confidence in the efficacy of medications.

"These real-world findings shed light on the challenges caregivers have every day and over the long-term, which in turn helps us learn how to empower caregivers with the right skills and adequate resources," said Debra Lerner, MS, PhD, the study's principal investigator.

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