International Caregiver

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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