National Alliance on Mental Illness
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Schizophrenia Survey: Summary

Imagine being homeless, or having a son or daughter who went missing and has not been heard from in years.

Imagine also fighting a healthcare system that is so fragmented that you can't get what you need to recover from a serious medical illness.

More than 2 million Americans and their families face these conditions every day because of an illness called schizophrenia.

It's an illness that is twice as common as HIV/AIDS.  It does not discriminate. It strikes people of all races and both genders, and cuts across all social and economic classes.

To better understand the impact of schizophrenia, NAMI, the National Alliance on Mental Illness, commissioned Harris Interactive to conduct a survey on attitudes and awareness among the general adult public, as well as among caregivers and individuals living with the illness.

Schizophrenia is a chronic, but manageable, disease. However, much more needs to be done to support treatment and recovery. Two million Americans live with the illness. Only a third receive treatment. With medication, symptoms can often be controlled successfully: About 50% can improve significantly or recover completely over time.

Treatment works--if a person can get it. As many of the findings of the report indicate, getting access to such treatment is a challenge. Individuals living with schizophrenia who participated in the survey in fact represent a special population because 95% are engaged in treatment. Most people living with the illness are not.

The survey results reveal major gaps between what the public believes to be true about schizophrenia, what science tell us, and the real experiences and realities of individuals affected by the illness.

  • Early intervention and treatment are critical to preventing long-term effects of the illness, but there is an enormous delay, averaging 8.5 years, between first experiencing symptoms to receiving treatment for schizophrenia.
  • Many people with schizophrenia report that they have difficulty accessing other healthcare services and do not receive proper attention to other health concerns; this may be one reason why people with schizophrenia die on average 25 years sooner than the general population.
  • Public familiarity with schizophrenia is low, and public concern and fear is high. People recognize that it is a medical illness and that treatment works, presenting a paradox relative to attitudes.
  • The public feels differently about people in treatment than it feels about people not in treatment; but still, to a large degree, people don't want to date, work for, or work with people with schizophrenia.
  • Caregivers face many challenges in caring for their loved ones, both in terms of making sure the person they care for has access to treatment and services, as well as taking care of themselves. They report that they often feel isolated, lonely, worried, and burned out.
  • Access to appropriate medications and services remains elusive for many, if not most, families and individuals.
  • For many, in spite of the tremendous hardship of the personal experience, the resilience of the human spirit emerges as one of hope, faith, and triumph.

Finally, NAMI's analysis offers recommendations that narrow the knowledge gap by dispelling myths and promoting understanding and the potential for recovery:

  • Increase public education and awareness
  • Close the gap between onset of symptoms and treatment
  • Provide ready access to primary healthcare
  • Increase access to treatment and services, including housing
  • Ensure education and support for families and individuals living with schizophrenia
  • Invest in scientific and medical research advances

We must make a commitment to individual dignity and recognize that with proper treatment, services, and supports, horizons for people living with the illness can be restored. It is time to make recovery real.