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.

• 82% say have faced challenges in accessing services in the healthcare system.
• 79% say they are challenged by finding specialized services.

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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Schizophrenia does not make me any less of a person than anyone else. It does not mean my life is over.

I think the most important thing is to accept the disorder like any other medical disorder; that treatment works and that recovery is not only possible, but probable as well.

I think the most important thing is that family, friends, and the public should have awareness and understanding of schizophrenia.

It is a disease that can destroy your life. Families can and do turn their backs on you. The public doesn't care. Your government doesn't care. No one cares. If there is a hell, having this illness has got to be the greater part of hell's acreage.

I want people to know that I am just as intelligent and compassionate as any other person and that I am not a danger to them.

My health insurance has a co-pay of 50% for mental health services but only $10 for physical health services. I can't move out of my parent's house because it costs me $350 a month just for therapy, the psychiatrist, and medication.

It is biological and could happen to anyone. As a caregiver, you need to gather your strength from the love you have for the person you are caring for. .

Prepare to be challenged by the disease, the person, and the system.

It is easy to burn out when there is no support, understanding for yourself or your child. Compassion is essential for what they are going through. Knowledge about the illness and the medications are the only thing that helps cope with symptoms.

Caring for a family member is a life-changing and never-ending process. You must remain ever vigilant and expect difficulties in accessing necessary and appropriate services. You must also take care of yourself.

The public needs to fully understand schizophrenia first before people can begin to grasp the toll this illness takes on the individual affected by this disease and the physical and mental strain experienced by family members...