Keeping Care Complete is the first international survey to shed light
on experiences and insights of family caregivers of individuals with
bipolar disorder, schizophrenia and schizoaffective disorder.
Caregivers from Australia, Canada, Germany, France, Italy, Spain, the
United Kingdom and the United States participated in the survey, which
was developed by the World Federation for Mental Health and Eli Lilly
and Company.
Combined findings across countries
The percentages below represent answers across all countries and a
total number of respondents (982), unless noted otherwise. To view data
sets from countries represented in the survey, as well as additional
fact 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 that
efficacy is their primary concern when considering treatment options
for their family member.
- 90% of caregivers say that an
effective medication is needed to control the symptoms of the family
member’s condition, before their overall well-being (physical and
mental health) can be properly tackled.
Finding the right medication can be difficult and lengthy, and many
people try different medications for years before they find the one
that works.
Of the 756 caregivers who say that their relative is satisfied with
their current medicatio
-
56% say it took two years or
more for their relative to find a medication that worked.
- 85% say that their relative
tried more than two different medications before finding the one that
worked and 36% say their relative had to try more than five
medications.
In addition, 82% of all caregivers said that initial experiences with a
treatment influence overall perceptions of the treatment.
Treatment Disruption and Relapse
Treatment disruption due to change in medication and discontinuation
are major causes of relapse, defined as the worsening of symptoms after
apparent recovery.
Of the 502 caregivers who say their family member stopped taking their
medication despite his/her doctor’s advice:
-
91% of caregivers say that
this led to relapse for their family member.
- 71% of caregivers say that as
a result of medication discontinuation, their family members had to be
hospitalized.
Of the 455 caregivers who say their family member’s
medication was changed based on a decision made in cooperation with a
doctor:
-
56% say that this change in
their family member’s medication led to relapse.
- 64% say that family life was
disrupted as a result of their family member’s medication being changed.
- 53% say that as a result of
medication change, their family member seemed even less like their old
self.
- 39% feel frustrated as a
result of their family member’s medication change.
Consequences of Relapse
Relapse is a common subject of concern for caregivers and has
devastating consequences for family members of people living with
mental illnesses:
Of the 838 caregivers who said their family member experienced relapse:
-
Caregivers say that as a
result of relapse their loved ones were unable to work (72%), were
hospitalized (69%), tried to commit suicide (22%) and were imprisoned
(20%).
- 63% of caregivers say they
always or often worry about their family member experiencing a relapse.
- Caregivers say that relapse
disrupted their own lives substantially (61%), they became more fearful
about their family member’s condition and well-being (56%),
their mental and physical health worsened (54%) and their financial
situation worsened (26%).
- 70% of caregivers say their
general well-being is greatly affected when their family member
relapses.
Impact of Successful Treatment
When effective, treatment for severe mental illness can lead to
positive outcomes:
Of the 756 caregivers who say that their relative is satisfied with
their current medication:
-
Caregivers say that effective
treatment enabled their family members with severe mental illness to
re-engage with family and friends (81%), perform daily tasks more
independently (79%), stay out of the hospital (74%), learn a new
skill/attend a class (48%) or hold a steady job/volunteer (42%).
- 74% of caregivers say that
successful treatment greatly or substantially contributes to their
family member’s overall quality of life.
- Family member’s wellness and
improvement of symptoms helped caregivers decrease stress levels (76%),
decrease interpersonal tension (72%) and increase the amount of quality
time spent with family (71%).
Long-term Wellness
Caregivers want doctors to focus more on achieving long-term stability:
-
66% of caregivers say they
were frustrated by a doctor’s approach to set very low goals
for long-term improvement of their relative’s illness.
- 76% of caregivers say doctors
should focus on long-term care rather than managing crisis situations.
- 98% of caregivers say that the
goal of treatment should be to maintain wellness, defined as the
condition of both good physical and mental health.
Individuals with severe mental illness benefit from wellness programs
and family support:
-
According to 73% of
caregivers, family support is a key factor that keeps their family
member well.
84% of caregivers agree that wellness programs are valuable in helping
their family member manage their symptoms.
Stigma is still a barrier:
-
84% of caregivers say that
stigma and discrimination make it harder for their family member to
stay well.
About the caregivers
-
Caregivers in this study were
most commonly the parent (31%) of the family member, followed by the
child (24%), the spouse (17%), and the sibling (16%).
- 75% are female.
- They are very involved in
their family member’s treatment:
- 69% accompany their family member
during 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 week
caregiving.
About their family members
-
49% of caregivers said the
diagnosis of their family members was schizophrenia, 45% answered
bipolar disorder and 6% answered schizo-affective disorder.
- Most have been battling their
illnesses for more than 6 years:
- 48% say that their family member was
diagnosed for more than 10 years.
- 21% report the diagnosis has been in
place for 6-10 years.
- 46% live with the surveyed
caregiver and 30% live in their own apartment or house.
- 41% receive treatment at an
outpatient mental health center, 33% receive treatment from an
individual psychiatrist and 25% receive treatment from a primary care
or family physician.
Survey Methodology
Independent market research companies Ipsos-Insight and All Global Ltd.
conducted the survey of 982 caregivers of individuals with bipolar
disorder, schizophrenia or schizo-affective disorder or Australia,
Canada, Germany, France, Italy, Spain, the United Kingdom and the
United States between November 2005 and June 2006.
Data was collected via 30-minute telephone interviews, which included a
set of close-ended questions focusing on topics such as treatment
discontinuation, relapse, caregiver burden, information exchange
between families and treatment teams and long-term wellness. In
addition, the survey included several country-specific questions.
Snapshot by country
Australia
Recruitment method: Support groups, newspaper advertisement
Participating support groups
-
ARAFMI, including Arafmi and
NT Arafmi
- Mental Illness Fellowship of
South Australia
- Mental Illness Fellowship of
North Queensland
- Mental Illness Fellowship of
Western Australia
- Mental Illness Fellowship of
Northern Territory
- Mental Illness Fellowship of
New South Wales
- Mental Illness Fellowship of
Australia
- Schizophrenia Fellowship of NSW
Canada
Recruitment method: Ipsos online panel
Germany
Recruitment method: Support groups
Participating support groups
-
LV Bayern ApK e.V.
- LV Hessen ApK e.V.
- LV Mecklenburg-Vorpommern ApK
e.V.
- LV Rheinland- Pfalz ApK e.V.
- LV Sachsen ApK e.V.
- Angehörigengruppe
Heidelberg
- Angehörigengruppe
Offenburg Umland
- Angehörigengruppe
Konstanz
- Landesverband Hamburg
France
Recruitment method: Support groups, newspaper advertisement
Participating support groups
-
Club Loisir
- Pitha Kyesse
- Advocacy France
- SCHIZO? OUI!
Italy
Recruitment method: Support groups
Participating 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
Spain
Recruitment method: Support groups
Participating 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 Kingdom
Recruitment methods: Support groups and online advertisement
Participating support groups
-
MDF Bipolar
- Mental Health Network
- Rethink
- Mood Swings
- Making Space
- NSF (Scotland) (National
Schizophrenia Fellowship)
- Hafal
- Mind
United States
Recruitment method: Ipsos online panel
Lilly and WFMH are grateful to everyone who contributed to this
important survey. The commitment from leaders of country-specific
support groups was especially critical to the success of the project.
About WFMH
The WFMH is an international interdisciplinary membership organization
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.
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 www.lilly.com.
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