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Keeping Care Complete is the first international survey to shed lighton experiences and insights of family caregivers of individuals withbipolar disorder, schizophrenia and schizoaffective disorder.Caregivers from Australia, Canada, Germany, France, Italy, Spain, theUnited Kingdom and the United States participated in the survey, whichwas developed by the World Federation for Mental Health and Eli Lillyand Company.Combined findings across countriesThe percentages below represent answers across all countries and atotal number of respondents (982), unless noted otherwise. To view datasets from countries represented in the survey, as well as additionalfact sheets on the caregiver perspective and serious mental illness,please visit www.wfmh.org.Treatment Priorities Caregivers view effective medication as a top treatment priority:
- 91% of caregivers say thatefficacy is their primary concern when considering treatment optionsfor their family member.
- 90% of caregivers say that aneffective medication is needed to control the symptoms of the familymember’s condition, before their overall well-being (physical andmental health) can be properly tackled.
Finding the right medication can be difficult and lengthy, and manypeople try different medications for years before they find the onethat works.Of the 756 caregivers who say that their relative is satisfied withtheir current medicatio
- 56% say it took two years ormore for their relative to find a medication that worked.
- 85% say that their relativetried more than two different medications before finding the one thatworked and 36% say their relative had to try more than fivemedications.
In addition, 82% of all caregivers said that initial experiences with atreatment influence overall perceptions of the treatment.Treatment Disruption and RelapseTreatment disruption due to change in medication and discontinuationare major causes of relapse, defined as the worsening of symptoms afterapparent recovery.Of the 502 caregivers who say their family member stopped taking theirmedication despite his/her doctor’s advice:
- 91% of caregivers say thatthis led to relapse for their family member.
- 71% of caregivers say that asa result of medication discontinuation, their family members had to behospitalized.
Of the 455 caregivers who say their family member’smedication was changed based on a decision made in cooperation with adoctor:
- 56% say that this change intheir family member’s medication led to relapse.
- 64% say that family life wasdisrupted as a result of their family member’s medication being changed.
- 53% say that as a result ofmedication change, their family member seemed even less like their oldself.
- 39% feel frustrated as aresult of their family member’s medication change.
Consequences of RelapseRelapse is a common subject of concern for caregivers and hasdevastating consequences for family members of people living withmental illnesses:Of the 838 caregivers who said their family member experienced relapse:
- Caregivers say that as aresult of relapse their loved ones were unable to work (72%), werehospitalized (69%), tried to commit suicide (22%) and were imprisoned(20%).
- 63% of caregivers say theyalways or often worry about their family member experiencing a relapse.
- Caregivers say that relapsedisrupted their own lives substantially (61%), they became more fearfulabout their family member’s condition and well-being (56%),their mental and physical health worsened (54%) and their financialsituation worsened (26%).
- 70% of caregivers say theirgeneral well-being is greatly affected when their family memberrelapses.
Impact of Successful TreatmentWhen effective, treatment for severe mental illness can lead topositive outcomes:Of the 756 caregivers who say that their relative is satisfied withtheir current medication:
- Caregivers say that effectivetreatment enabled their family members with severe mental illness tore-engage with family and friends (81%), perform daily tasks moreindependently (79%), stay out of the hospital (74%), learn a newskill/attend a class (48%) or hold a steady job/volunteer (42%).
- 74% of caregivers say thatsuccessful treatment greatly or substantially contributes to theirfamily member’s overall quality of life.
- Family member’s wellness andimprovement of symptoms helped caregivers decrease stress levels (76%),decrease interpersonal tension (72%) and increase the amount of qualitytime spent with family (71%).
Long-term Wellness Caregivers want doctors to focus more on achieving long-term stability:
- 66% of caregivers say theywere frustrated by a doctor’s approach to set very low goalsfor long-term improvement of their relative’s illness.
- 76% of caregivers say doctorsshould focus on long-term care rather than managing crisis situations.
- 98% of caregivers say that thegoal of treatment should be to maintain wellness, defined as thecondition of both good physical and mental health.
Individuals with severe mental illness benefit from wellness programsand family support:
- According to 73% ofcaregivers, family support is a key factor that keeps their familymember well.
84% of caregivers agree that wellness programs are valuable in helpingtheir family member manage their symptoms.Stigma is still a barrier:
- 84% of caregivers say thatstigma and discrimination make it harder for their family member tostay well.
About the caregivers
- Caregivers in this study weremost commonly the parent (31%) of the family member, followed by thechild (24%), the spouse (17%), and the sibling (16%).
- 75% are female.
- They are very involved intheir family member’s treatment:
- 69% accompany their family memberduring visits with doctors;
- 58% are the primary caregiver;
- 56% weigh in on treatment decisions;
- 30% administer the medication;
- 53% spend more than 10 hours per weekcaregiving.
About their family members
- 49% of caregivers said thediagnosis of their family members was schizophrenia, 45% answeredbipolar disorder and 6% answered schizo-affective disorder.
- Most have been battling theirillnesses for more than 6 years:
- 48% say that their family member wasdiagnosed for more than 10 years.
- 21% report the diagnosis has been inplace for 6-10 years.
- 46% live with the surveyedcaregiver and 30% live in their own apartment or house.
- 41% receive treatment at anoutpatient mental health center, 33% receive treatment from anindividual psychiatrist and 25% receive treatment from a primary careor family physician.
Survey Methodology Independent market research companies Ipsos-Insight and All Global Ltd.conducted the survey of 982 caregivers of individuals with bipolardisorder, schizophrenia or schizo-affective disorder or Australia,Canada, Germany, France, Italy, Spain, the United Kingdom and theUnited States between November 2005 and June 2006.Data was collected via 30-minute telephone interviews, which included aset of close-ended questions focusing on topics such as treatmentdiscontinuation, relapse, caregiver burden, information exchangebetween families and treatment teams and long-term wellness. Inaddition, the survey included several country-specific questions.Snapshot by countryAustralia Recruitment method: Support groups, newspaper advertisementParticipating support groups
- ARAFMI, including Arafmi andNT Arafmi
- Mental Illness Fellowship ofSouth Australia
- Mental Illness Fellowship ofNorth Queensland
- Mental Illness Fellowship ofWestern Australia
- Mental Illness Fellowship ofNorthern Territory
- Mental Illness Fellowship ofNew South Wales
- Mental Illness Fellowship ofAustralia
- Schizophrenia Fellowship of NSW
CanadaRecruitment method: Ipsos online panelGermanyRecruitment method: Support groupsParticipating support groups
- LV Bayern ApK e.V.
- LV Hessen ApK e.V.
- LV Mecklenburg-Vorpommern ApKe.V.
- LV Rheinland- Pfalz ApK e.V.
- LV Sachsen ApK e.V.
- AngehörigengruppeHeidelberg
- AngehörigengruppeOffenburg Umland
- AngehörigengruppeKonstanz
- Landesverband Hamburg
France
Recruitment method: Support groups, newspaper advertisementParticipating support groups
- Club Loisir
- Pitha Kyesse
- Advocacy France
- SCHIZO? OUI!
ItalyRecruitment method: Support groupsParticipating support groups
- Associazione Aiutamoli
- Fondazione Mario Lugli
- A.R.A.P.
- O.N.L.U.S.
- DI.A.PSI.GRA.
- Unasam
- Caffe’Dell’Arte
- Progetto Itaca
- DI.A.PSI-Roma
SpainRecruitment method: Support groupsParticipating support groups were associations affiliated with FEAFES:
- FEAFES Andalucia
- AFESA Asturias FEAFES
- FEAFES Canarias
- ASCASAM Cantabria
- FEAFES Castilla-La-Mancha
- AFECEP Ceuta
- FEAFES Extremadura
- ARFES PRO SALUD MENTAL La Rioja
- FEMASAM Madrid
- FEAFES Murcia
- ANASAPS Navarra
- FEDEAFES
- FEAFES Communidad Valenciana
United KingdomRecruitment methods: Support groups and online advertisementParticipating support groups
- MDF Bipolar
- Mental Health Network
- Rethink
- Mood Swings
- Making Space
- NSF (Scotland) (NationalSchizophrenia Fellowship)
- Hafal
- Mind
United StatesRecruitment method: Ipsos online panelLilly and WFMH are grateful to everyone who contributed to thisimportant survey. The commitment from leaders of country-specificsupport groups was especially critical to the success of the project.About WFMHThe 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.About Eli Lilly and CompanyLilly, 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 Lillyis available at www.lilly.com.
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