Survey: Caregivers of people with mental illness say treatment disruption has serious consequences

American caregivers ask doctors to focus on maintaining long-term wellness

Springfield, VA - September 18, 2006 -- The disruption of a family member's treatment for mental illness and subsequent worsening of psychiatric symptoms can have harsh financial, physical and emotional consequences for families, according to results from an international survey of caregivers of individuals with schizophrenia, bipolar disorder and schizoaffective disorder. Keeping Care Complete is a survey of 982 family caregivers, including 200 caregivers from the United States.

"One in 17 Americans suffer from serious mental illnesses worldwide. When you consider all of the parents, siblings, spouses and children connected to these individuals, you see how far the shadow of serious mental illness is cast," said Preston J. Garrison, secretary general and chief executive officer, World Federation for Mental Health. "This survey shows that many caregivers have experienced both the chaos of their loved one's relapse and the relief that comes with stabilization."

Keeping Care Complete reveals the devastating consequences of relapse, defined as the worsening of symptoms after apparent recovery, and sheds light on a desire among caregivers for doctors to focus on long-term care rather than managing crisis situations. The survey was developed by the World Federation for Mental Health (WFMH) and Eli Lilly and Company. Independent market research company Ipsos conducted the survey of caregivers in the United States, as well as in Australia, Canada, Germany, France, Italy, Spain and the United Kingdom.

Relapse Consequences and Triggers

Caregivers whose family members experienced relapse reported that as a result, their loved ones were unable to work, were hospitalized, tried to commit suicide and/or were incarcerated. Many of these caregivers also said that their own health and financial situation deteriorated following the relapse. Among the 110 American caregivers whose family members stopped taking their medication despite his/her doctor's advice, 89 percent reported their family member relapsed after discontinuation.

"Once patients find a medication that works for them, it is important for them to stay on it. Attempts to save resources by limiting access to newer medications can fail when a switch to a different treatment, which may lead to treatment discontinuation and later trigger a relapse, ultimately increases costs for hospitalization and other rehabilitative services," said Ken Duckworth, MD, assistant professor of psychiatry at Harvard Medical School and medical director for NAMI, the nation's largest grassroots mental health organization dedicated to persons living with serious mental illness and their families. "What this survey shows, and what we've seen in communities around the country, is that treatment disruption can have a devastating effect on the entire family."

Efficacy is top treatment priority for caregivers

Ninety-four percent of American caregivers agree that efficacy is their primary concern when weighing treatment options for their family member and 92 percent reported that an effective medication is needed to control symptoms before overall well-being and health can be properly tackled.

Results further show that caregivers who say their relative is satisfied with their current medication believe that effective treatment has enabled their family members to perform daily tasks more independently, stay out of the hospital and hold a steady job or volunteer position. In addition to medication, caregivers cited family support and social support, talk therapy, exercise, diet and nutrition, having responsibilities and a stable schedule among key factors that help keep their family member well.

Desire to raise expectations and focus on long-term wellness

Seventy-two percent of American caregivers agree they would like their family member's doctor to focus more on long-term care rather than managing crisis situations. Carolyn Spiro, M.D., agrees that healthcare providers need to be encouraged to consider the long-term needs and goals of individuals diagnosed with schizophrenia, schizoaffective disorder and bipolar disorder. Spiro is co-author of Divided Minds: Twin Sisters and Their Journey through Schizophrenia, a memoir written with her twin sister Pamela Spiro Wagner, who was diagnosed with schizophrenia in college.

"Keeping Care Complete highlights the complex web of interdependent supports that enable individuals living with serious psychiatric illnesses to achieve complete care and long-term wellness," says Spiro. "Complete care is made up of effective medication, compassionate providers, robust community-based programs and empowered family members. As shown in the survey, family members can provide significant insight into these devastating but treatable illnesses."

Survey findings and fact sheets on schizophrenia, schizoaffective and bipolar disorder and the caregiver perspective are available at


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About Bipolar Disorder, Schizophrenia and Schizoaffective Disorder

Bipolar disorder, schizophrenia and schizoaffective disorder are complex mental illnesses that know no racial, cultural or economic boundaries. Bipolar disorder, formerly known as manic-depression, is characterized by debilitating mood swings with symptoms categorized by mania and depression. Schizophrenia is characterized by acute psychotic episodes including delusions (false beliefs that cannot be corrected by reason), hallucinations (usually in the form of non-existent voices or visions) and long-term impairments such as diminished emotion, lack of interest and depressive symptoms, such as hopelessness and suicidal thoughts. Schizoaffective disorder is characterized by a combination of symptoms of schizophrenia and an affective (mood) disorder. Nearly six million people suffer from bipolar disorder and nearly two and a half million people suffer from schizophrenia worldwide. , Although the exact prevalence of schizoaffective disorder is not clear, it is estimated to range from two to five in a thousand people. Schizoaffective disorder may also account for one-fourth or even one-third of all persons with schizophrenia.

About WFMH

WFMH is an international interdisciplinary membership organization based in Virginia whose mission is to promote, among all people and nations, the highest possible level of mental health in its broadest biological, medical, educational and social aspect. Consultative status at the United Nations provides WFMH a variety of opportunities to engage in mental health advocacy at the global level, working closely with the World Health Organization, UNESCO, the UN High Commissioner for Refugees, the UN Commission on Human Rights, the International Labor Organization and others. Additional information about WFMH is available at

About Eli Lilly and Company

Lilly, a leading innovation-driven corporation, is developing a growing portfolio of first-in-class and best-in-class pharmaceutical products by applying the latest research from its own worldwide laboratories and from collaborations with eminent scientific organizations. Headquartered in Indianapolis, Ind., Lilly provides answers - through medicines and information - for some of the world's most urgent medical needs. Additional information about Lilly is available at

Last reviewed: By John M. Grohol, Psy.D. on 30 Apr 2016
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