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Schizophrenia Survey Analysis: Caregiver Experiences and Challenges

Mental illness affects the entire family. In the survey, more than two-thirds of caregivers (68%) are the parents or step-parents of the person living with schizophrenia. Brothers and sisters comprised 12% of caregivers and 7% are spouses or significant others. Seven percent of caregivers are the children or grandchildren of the person under their care. The greatest challenge for all these family members is simply finding treatment providers and services for their loved ones.

Caregivers' ranking of the factors that would be most helpful for improving the condition of the persons in their care closely mirrored that of the persons who live with schizophrenia.

  • More effective medications and treatment (96%)
  • Access to crisis care (95%)
  • Access to medication and treatment (95%)
  • Access to a psychiatrist (95%)
  • Assertive community treatment (ACT) (94%)
  • Access to peer support groups (93%)
  • Integrated medical care with other conditions (92%)
  • Access to a care manager (91%)
  • Access to a hospital bed (90%)
  • Access to housing (88%)
  • Having a job (80%)
  • Transportation (80%)
  • At the same time, the challenges caregivers face can be as significant as those affecting people living with schizophrenia.

  • 41% of caregivers have provided care for more than ten years; 19% for more than 40 hours a week.
  • 63% are challenged trying to find time for themselves; 57% in trying to manage time effectively.
  • 55% face challenges in finding time to take care of their own health.
  • The burden wears on family relationships: Approximately half of caregivers (51%) have felt taken advantage of by loved ones living with schizophrenia.
  • Caregiver concerns extend to other feelings. Nearly all (90%) worry about what will happen to their loved ones when they die. More than 70% typically feel sad, protective, or frustrated when they hear others talking about the person they care for or others living with schizophrenia.
  • Less than half--but still a high proportion (43%)--indicate they are afraid of the person in their care. The U.S. Surgeon General's Report on Mental Health has noted that risks of violence are higher for family members. At the same time, the NIMH "Clinical Antipsychotic Trials of Intervention Effectiveness" (CATIE) study found that people diagnosed with schizophrenia who lived with their families and felt "listened to most of the time" had half the rate of violence of those who felt less supported.

    Worth noting is the fact that 71% of caregivers who took part in the NAMI survey believe that the condition of the person they care would improve if caregivers received respite care.

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