Mental Illness Takes Huge Caregiver Toll EAST HANOVER, N.J. -- The family burden of mental illness may be greater than previously known, according to a national survey examining attitudes and behaviors associated with schizophrenia. In a survey conducted by Consumer Health Sciences (CHS) and the National Mental Health Association (NMHA), data was gathered from 1,328 family caregivers and 879 patients that reveals the mental health of many family caregivers borders dangerously close to clinical depression due to the stressful demands of treating and living with a person suffering from schizophrenia. Among other items, the survey found that family members who care for loved ones with schizophrenia face a host of distressing, burdensome problems. Oftentimes, patients who are not treated properly turn to drugs and alcohol, occasionally become aggressive and many -- estimates range from 25 to 40 percent -- attempt suicide. Close to one-third of caregivers surveyed said that the emotional and behavioral symptoms of the illness caused them extreme hardship. Drug abuse, suicide threats and violent behavior, while not necessarily daily realities, exist as constant sources of anxiety and are cited by more than half of caregivers as their most pressing concerns. Schizophrenia is the most common and disabling of the major mental illnesses, affecting nearly 2.7 million Americans. The illness is characterized by delusional and confused thinking, hallucinations and social isolation. In fact, more than 40 percent of schizophrenia patients participate in no structured activity on a daily basis, according to the survey. Symptoms of schizophrenia generally appear as people approach their late- teens and early twenties. Because family members tend to ascribe "bizarre" behavior to typical adolescent problems rather than mental illness, many patients are improperly diagnosed and remain untreated for several years. In many instances, unfortunately, they wait four years, on average, to see a doctor after first noticing problems with their child. From State Hospital to Family Home For many years, people suffering from schizophrenia were confined to state mental hospitals, however a movement towards deinstitutionalization shifted much of the caregiving burden for chronic schizophrenia patients from state hospitals to families. According to the CHS survey, 77 percent of caregivers said they play an extremely important role in the treatment of the person for whom they care. Seventy-eight percent of the caregivers surveyed say health care professionals do not understand the problems they face in caring for a person with mental illness. Survey data confirms that caregivers' involvement in treatment is broad. Almost one-third of the respondents said they speak frequently with health care providers about the treatment plan for the patient. The survey also reveals that caregivers' relative ease in living and helping to treat patients varies with the choice of antipsychotic medication. Medications Offer Relief Antipsychotic drugs have been used for more than 30 years, but they are hampered by a variety of disturbing side effects that often interfere with patients' compliance to the prescribed dosing. The introduction of "atypical" medications, such as clozapine, olanzapine and risperidone, offered many patients relief from symptoms without the misery of side effects such as uncontrollable twitching of limbs. John Docherty, M.D., a psychiatrist at Cornell University Medical College and advisor to the schizophrenia survey, says that, based on the survey, patients and caregivers alike are more satisfied with the atypical medications than the older medications, such as haloperidol. "Our research suggests that the new atypical antipsychotics provide caregivers and patients with an increased level of assurance compared to the traditional antipsychotics. They are most satisfied with the medication clozapine and importantly, caregivers report clozapine patients in particular are less prone to violent or threatening behavior." When asked what most worried them on a daily basis, 53 percent of caregivers said drug abuse was at the top of their list of concerns, followed closely by suicide and violent or threatening behavior. Nancy Schiller, although not a survey participant, knows first-hand about caring for someone with schizophrenia. Her daughter Lori has battled schizophrenia for more than twenty years. The Schillers' experience is recounted in a book, The Quiet Room, which was co-authored by Lori. While Lori credits clozapine as a lifesaver, her mother recalls the devastating toll of the illness: "I remembered the two and a half years she lived at home after her first hospitalization as the most awful, stressful time I have ever lived through. I was always walking on eggshells, always afraid I was going to do something or say something that would set her off... I never slept well. I got up every night to see if she was still breathing. I would come home in the evening to find the garage doors closed and I'd be afraid to open them." Survey Methodology Data was also gathered from patients, creating two separate databases. Consumer Health Sciences tracks the attitudes and behaviors of patients with schizophrenia and their caregivers, maintaining the largest commercially available databases on the subject. The company performs quantitative market research, specializing in providing information on consumer health care issues. In addition to its schizophrenia project, it has databases examining Alzheimer's disease, depression and diabetes. The National Mental Health Association (NMHA) distributed the survey to its 152 local chapters throughout the country. NMHA is a consumer and patients advocacy organization devoted to fighting mental illness and promoting mental health. Novartis Pharmaceuticals Corporation sponsored promotion of the survey findings. | 
