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.

For more information visit Janssen.com.