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First-ever International Caregiver Survey to ShowTreatment Disruption Has Serious Consequences for Families Living with Serious MentalIllness CaregiversAskDoctors to Focus on Maintaining Long-Term Wellness
PARIS – September 18, 2006 – The disruption of a familymember’s treatment for mental illness and subsequentworsening of psychiatric symptoms can have harsh financial, physicaland emotional consequences for families. Keeping CareComplete, an international survey of 982 family caregivers ofindividuals with schizophrenia, bipolar disorder and schizoaffectivedisorder, reveals the devastating consequences of relapse – defined asthe worsening of symptoms after apparent recovery – and sheds light ona desire among caregivers for doctors to focus on long-term care ratherthan managing crisis situations.”More than 50 million people suffer from serious mental illnessesworldwide. When you consider all of the parents, siblings, spouses andchildren connected to these individuals, you see how far the shadow ofserious mental illness is cast,” said Preston J. Garrison,Secretary-General and Chief Executive Officer, World Federation forMental Health (WFMH). “This survey shows that many caregivers haveexperienced both the chaos of relapse and the relief that comes withstabilization.”Keeping Care Complete was developed by the WFMH and Eli Lilly andCompany. Independent market research company Ipsos conductedthe survey of caregivers in Australia, Canada, Germany, France, Italy,Spain, the United Kingdom and the United States. Relapse Consequences and Triggers Caregivers whose family members experienced relapse reported that as aresult, their loved ones were unable to work, were hospitalized, triedto commit suicide and/or were incarcerated. Many of thesecaregivers also said that their own mental and physical health andfinancial situation deteriorated following the relapse. Amongthe 502 caregivers whose family members stopped taking theirmedication, 91 percent reported their family member relapsed afterdiscontinuation. In addition, 56 percent of the 455 caregivers who saidtheir family member’s medication was changed based on adecision made in cooperation with the doctor their loved oneexperienced relapse after the switch.“Once patients find a medication that works for them, it isimportant for them to stay on it. Attempts to save resourcesby limiting access to newer medications can fail when a switch to adifferent treatment, which may lead to treatment discontinuation andlater trigger a relapse, ultimately increases costs for hospitalizationand other rehabilitative services,” said Prof. Dr. DieterNaber, Director of Department of Psychiatry and Psychotherapy at theUniversity Medical Center Hamburg-Eppendorf in Germany, who served as amedical advisor for the survey. “Before a switch is made,doctors have to weigh risks and benefits of each treatment option whiletaking into consideration an individual’s potential reactionto a new medication.”Efficacy is top treatment priority for caregiversNine in ten caregivers surveyed agreed that efficacy is their primaryconcern when weighing treatment options for their family member andthat an effective medication is needed to control symptoms, beforeoverall well-being and health can be properly tackled. Results furthershowed that caregivers who say their relative is satisfied with theircurrent medication believe that effective treatment has enabled theirfamily members to perform daily tasks more independently, stay out ofthe hospital and hold a steady job or volunteer position. Inaddition to medication, caregivers cited family support and socialsupport, talk therapy, exercise, having responsibilities and a stableschedule among key factors that help keep their family member well.Desire to raise expectations and focus on long-term wellnessMost caregivers say physicians should focus on long-term management oftheir loved one’s mental illness rather than managing crisissituations: 66 percent of caregivers said that they are frustrated by adoctor’s approach to set very low goals for long-termimprovement of the relative’s illness.”Keeping Care Complete highlights the complete circle of care that isideal for achieving long-term wellness for people, like my son, who areliving with a serious mental illness. The complete circle of careincludes a safe and stable relationship with a treatment team,effective medication suited to an individual’s needs, well-fundedcommunity-based wellness and other social support programs, andinformed family caregivers that have the support they need to remainstrong and to encourage their loved ones,” says Sigrid Steffen, familymember and vice president of EUFAMI, the European Federation ofAssociations of Families of People with Mental Illness. “As shown inthe survey, family members can provide significant insight into thesedevastating but treatable illnesses.”International survey data and fact sheets on schizophrenia,schizoaffective and bipolar disorder and the caregiver perspective areavailable at www.wfmh.org. About Bipolar Disorder, Schizophrenia and Schizoaffective Disorder Bipolar disorder, schizophrenia and schizoaffective disorder arecomplex mental illnesses that know no racial, cultural or economicboundaries. Bipolar disorder, formerly known asmanic-depression, is characterized by debilitating mood swings withsymptoms categorized by mania and depression. Schizophrenia is characterized by acute psychotic episodes includingdelusions (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 interestand depressive symptoms, such as hopelessness and suicidalthoughts. Schizoaffective disorder ischaracterized by a combination of symptoms of schizophrenia and anaffective (mood) disorder. Twenty-seven million people suffer frombipolar disorder and 24 million people suffer from schizophreniaworldwide. , Although the exact prevalence of schizoaffectivedisorder is not clear, it is estimated to range from two to five in athousand people. Schizoaffective disorder may also account forone-fourth or even one-third of all persons with schizophrenia. About WFMH WFMH is an international interdisciplinary membership organizationwhose mission is to promote, among all people and nations, the highestpossible level of mental health in its broadest biological, medical,educational, and social aspect. Consultative status at the UnitedNations provides WFMH a variety of opportunities to engage in mentalhealth advocacy at the global level, working closely with the WorldHealth Organization, UNESCO, the UN High Commissioner for Refugees, theUN Commission on Human Rights, the International Labor Organization andothers. Additional information about WFMH is available at www.wfmh.org. About Eli Lilly and Company Lilly, a leading innovation-driven corporation, is developing a growingportfolio of first-in-class and best-in-class pharmaceutical productsby applying the latest research from its own worldwide laboratories andfrom collaborations with eminent scientific organizations.Headquartered in Indianapolis, Ind., Lilly provides answers –through medicines and information – for some of the world’smost urgent medical needs. Additional information about Lilly isavailable at www.lilly.com.Contacts:FranceFrédéric VilleGCI Groupe GreyOffice: 00 (33) 1-49-70-43-22Mobile: 00 (33) 6-23-17-19-80E-mail: [email protected]New YorkMatt McLernonGCI GroupOffice: 1 (212) 537-8264Mobile: 1 (609) 304-8046E-mail: [email protected] Keri McDonoughGCI GroupOffice: 1 (212) 537-8001Mobile: 1 (646) 244-9997E-mail: [email protected]Amra TuralicGCI GroupOffice: 1 (212) 537-8201Mobile: 1 (917) 302-2702E-mail: [email protected] |