Family and Caregiver Schizophrenia Discussion Forum

Largest Schizophrenia and Schizoaffective Disorder Caregiver Survey Reveals Overwhelming Burden and Inadequate Assistance


#1

TITUSVILLE, N.J., November 13, 2015 – In recognition of National Family Caregivers Month, Janssen Pharmaceuticals, Inc. today announced results of “A Large-Scale Survey of Caregivers of Persons with Schizophrenia and/or Schizoaffective Disorder Designed to Identify Unmet Needs” that showed caregiving is a significant burden and caregivers lack sufficient support and assistance. The study was recently presented at the Academy of Managed Care Pharmacy’s NEXUS 2015 Congress.

The survey assessed caregiving burden for patients with schizophrenia and/or schizoaffective disorder in a community sample of more than 1,100 caregivers. For many, caregiving was a constant or almost constant demand. Caregivers performed multiple caregiving tasks from providing help in tasks of life (shopping, transportation, laundry) to involvement in more complex responsibilities, such as monitoring illness-related behaviors and suicidality. The survey found that:

The majority of caregivers reported providing assistance with activities of daily living (ADLs) on a weekly basis or more often. Specifically, 61 percent of the caregivers assisted with finances while 59 percent and 54 percent provided assistance with meals and social activities, respectively.
Most caregivers (63 percent) reported not being able to find substitute caregivers when needed.
More than half of the caregivers (60 percent) reported having little to no information to guide them in their responsibilities, including financial (66 percent), legal advice (65 percent), community services (62 percent) or medical advice (49 percent).