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1
Welcome and Introduction
[Insert name and affiliation of
presenter]
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Today’s goal
• Heighten awareness of the perspective of family caregivers
– Increase understanding of how serious mental illnesses affect the
entire family
– Communicate the hopes, frustrations and experiences of
caregivers with regard to their loved one’s mental health treatment
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Today’s agenda
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• Introduction and overview
[local advocate - moderator]
• WFMH mission/role of family caregiver
[WFMH representative]
• Caregiver survey findings
[local advocate - moderator]
• Family caregiver/advocate story
[local caregiver]
• Contexualizing the findings
[psychiatrist]
• Question & Answer session
[local advocate - moderator]
• Closing remarks
[local advocate - moderator]
Insert name of WFMH
representative
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Who we are
• WFMH is an international NGO governed by an elected volunteer
board of directors from 17 countries
• WFMH represents all mental health professional disciplines,
consumers/patients, family members/caregivers and citizen
advocates from more than 100 countries
• WFMH’s World Mental Health Day network is comprised of 4000
organizations and individuals in 180 countries
• WFMH has NGO consultative status with the United Nations, World
Health Organization, UNESCO, International Labor Office and the
World Bank
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World Federation for Mental Health
mission
• Promote the advancement of mental health awareness, prevention,
advocacy and best practice recovery
• Improve the care, treatment and recovery of people with mental
disorders
• Heighten public awareness about the importance of mental health
through gaining understanding and improving attitudes
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Keeping Care Complete
• In 2005, in partnership with Eli Lilly, WFMH embarked on Keeping
Care Complete, an extensive survey that captured the perspectives of
close to 1,000 family caregivers in eight countries
• Keeping Care Complete is the first survey of its scope to shed light on
the relationship between family caregivers and individuals with
serious mental illness in areas such as treatment and long-term
wellness
• Family caregivers have always been an important part of WFMH
• We are excited to share our findings with you today and hope you can
help increase the world’s understanding of the toll mental illness can
take on families
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About the illnesses
• Keeping Care Complete surveyed family members of individuals with
schizophrenia, schizoaffective disorder and bipolar disorder
– These are debilitating biological disorders of the brain
– They know no cultural, racial or economic boundaries
– They are devastating—one in ten individuals with these illnesses will die by
suicide
– These mental illnesses currently do not have a cure, but there are
treatments available that can help people live with their illnesses
– People with serious mental illnesses can, and do, live productive and
fulfilling lives
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About schizophrenia
• Schizophrenia is characterized by
– Acute episodes of delusions (false beliefs that cannot be corrected by
reason)
– Hallucinations (usually in the form of voices)
– Long-term impairments, such as diminished emotion, lack of interest and
other depressive symptoms
Twenty-four million
people suffer from schizophrenia
worldwide
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About bipolar disorder
• Bipolar disorder is characterized by debilitating mood swings, which fall
into broad categories of mania and depression
– Signs of mania include euphoric or extremely irritable mood, distractibility,
accelerated or disorganized thinking, decreased inhibitions and increased
physical activities and risky behaviors
– Signs of depression include severe feelings of emptiness, guilt and selfhatred, impaired thinking, inability to experience joy, diminished energy and
preoccupation with death
Twenty-seven million
people suffer from bipolar disorder
worldwide
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About schizoaffective disorder
• Schizoaffective disorder is characterized by a combination of
symptoms of schizophrenia and an affective (mood) disorder
• To be diagnosed with schizoaffective disorder an individual needs to
exhibit:
– primary symptoms of schizophrenia such as delusions, hallucinations and
disorganized behavior
– a period of time when he or she also has had symptoms of major
depression or mania
Schizoaffective disorder may range from
0.2% to 0.5% of the population
and may account for 25% or 30% of all
individuals with schizophrenia
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The shadow of mental illness
• More than 50 million people suffer from serious mental illness worldwide
– These are parents, brothers, sisters, children, spouses and
grandparents
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Introduction to Keeping Care Complete
and survey findings
[Insert name and affiliation of presenter]
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Why survey family members?
• In recent decades, the trend away from long-term institutional care for
people with mental illnesses has led to the transferring of care out of
inpatient hospitals and into communities
With this shift—largely made possible by more effective
medications and increased community-based mental health
services— family members are playing a greater role in
day-to-day care
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Fulfilling an unmet need
• The profound impact on the families of individuals with these
illnesses may be comparable to that of family members of persons
with illnesses such as Alzheimer’s disease or cancer
• To date, there has not been much research conducted that captures
the feedback of family members
• Employers, the broader public, and even caregivers themselves may
not consider the enormity of the challenges faced on a daily basis by
family caregivers, especially when relapse occurs
Keeping Care Complete
was created to help fill this
unmet need for information
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Combined findings across countries
• Keeping Care Complete International Findings
– The percentages in the following slides represent answers across all
countries surveyed and a total number of respondents (982), unless noted
otherwise.
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About the caregivers surveyed
• The caregivers represented a wide range of family roles:
– 31% of caregivers are the mother or father of the individual living with
mental illness
– 24% are the son or daughter
– 17% are the husband or wife
– 16% are the brother or sister
• These caregivers are very involved in their family member’s treatment:
– 69% accompany their family member during visits with doctors
– 58% say they are the primary caregiver
– 56% are involved in treatment decisions
– 30% administer medication
– 53% spend more than 10 hours per week caregiving
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About their family members
• Their family members’ diagnosis was broken down into the
following:
– 49% of caregivers said the diagnosis of their family member had
schizophrenia
– 45% answered bipolar disorder
– 6% answered schizoaffective disorder
• 48% say that their family member has been diagnosed for more
than 10 years
• The family members’ living situation
– 46% live with the surveyed caregiver and 30% live in their own
apartment or house
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Their thoughts on stigma
62%
Strongly agree
84%
22%
Somewhat agree
Neither agree nor
disagree
6%
Stigma is still a barrier.
7%
Somewhat disagree
Strongly disagree
3%
84% of caregivers say that
stigma and discrimination
make it harder for their
family member to be well
QH7. To what extent do you agree that stigma or discrimination against people with mental illnesses
make it harder for your family member to be well?
Base: All respondents (982)
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Their thoughts on stigma (cont.)
41%
Strongly Agree
63%
22%
Somewhat agree
Neither agree nor disagree
Somewhat disagree
Strongly disagree
11%
13%
63% agree that stigma in
society about mental
illnesses may influence
relative's decision to stop
taking his/her medication
14%
QD4. To what extent do you agree that stigma in society about mental illnesses may influence your
relative's decision to stop taking his/her medication?
Base: Caregivers whose relatives stopped taking medication (502)
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The quest for the right medication
• Finding the right medication can be a difficult and lengthy process
• 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 medication:
– 56% say it took two years to find a medication that works
– 85% say that their relative tried more than two different medications before
finding the one that works
– 36% say their relative had to try more than five medications
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Treatment priorities
Strongly/
Somewhat
agree
Caregivers view effective
medication as a top
treatment priority.
91% FH
91% of caregivers say that
efficacy is their primary
concern when considering
treatment options for their
family member.
QF10. How much do you agree or disagree that efficacy defined as symptom control and
management that enables one to move forward with their life is your primary concern when
considering treatment options for your family member?
Base: All respondents (982)
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Treatment priorities (cont.)
– 90% say that an effective medication is needed to control the symptoms
of the family member's condition before the patient’s overall well-being
can be properly addressed
• Caregivers also want treatment teams to pay more attention to the
physical health of their loved ones
– 58% of caregivers said that their loved one’s healthcare treatment team
has never made them aware that people with severe mental illness are
more susceptible than the general population to physical illnesses
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Consequences of Relapse – patient
His/her relationships with
others suffered
73%
He/she was unable to
work
72%
He/she was hospitalized
69%
He/she became hostile
65%
He/she became violent
48%
He/she talked about
committing suicide
He/she tried to commit
suicide
He/she was incarcerated
34%
22%
20%
QF4. Which of the following have happened as the result of your family member
experiencing a relapse?
Base: Caregivers whose family members experienced relapse (838)
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Relapse can lead to
hospitalization,
suicide and
imprisonment of the
individuals with
severe mental
illness.
Consequences of Relapse — caregiver
It disrupted my life
substantially
61%
I became more fearful about
family member's condition
and well-being
56%
My mental and physical
health worsened
54%
My financial situation
worsened
I was worried for my safety
26%
20%
QF5. How did your family member's relapse impact you personally?
Base: Experienced relapse
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Relapse can have
devastating
consequences for
caregivers as well.
Relapse and treatment disruption
9%
Treatment disruption due to change
in medication and discontinuation
are major causes of relapse.
91%
Yes
Of the 502 caregivers who say their
family member stopped taking his/her
medication despite his/her doctor’s
advice, as a result 91% say their loved
ones experienced relapse (cont. on
second slide)
No
QD2. Did medication discontinuation ever lead to relapse, defined as worsening of symptoms and/or
acute return of symptoms after apparent and/or partial recovery?
Base: Caregivers whose family members stopped taking medication (502)
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Relapse and treatment disruption (cont.)
Treatment disruption due to change
in medication and discontinuation
are major causes of relapse (cont.).
43%
56%
Yes
Of the 455 caregivers who say their
family member’s medication was
changed based on a decision made in
cooperation with a doctor, as a result
56% say that this led to relapse.
No
QE2. Did change in medication ever lead to relapse, defined as worsening of symptoms and/or
acute return of symptoms after apparent and/or partial recovery?
Base: Caregivers whose family members’ medication was changed (455)
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Relapse and treatment disruption (cont.)
• Of the 502 caregivers who say their family member stopped taking
his/her medication despite his/her doctor’s advice, as a result:
71% say their loved ones
had to be hospitalized
.
71% strongly agree that
their family life was disrupted
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Relapse and treatment disruption (cont.)
• Of the 455 caregivers who say their family member’s medication was
changed based on a decision made in cooperation with a doctor, as a
result:
64% say that family life
was disrupted
53% say that their family member
seemed even less
like their old self
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Impact of Successful Treatment - patient
Re-engage with family and friends
81%
Was able to perform daily tasks more
independently
79%
Was less hostile
78%
74%
Was able to stay out of the hospital
Was able to learn a new skill or attend a class
Hold a steady job/volunteer
Was able to live on their own
48%
42%
38%
Caregivers
believe that
effective
treatment has
enabled their
family members to
perform daily
tasks more
independently
among other
tasks.
QB5. What was your family member able to accomplish while being treated successfully?
Base: Caregivers whose family members are satisfied with medication (756)
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Impact of Successful Treatment caregiver
• The improvement of the family member’s symptoms improved the
quality of life of the caregiver
How did your loved one’s
ability to find an effective treatment
affect your own life?
71%
Increased quality
time spent with
family
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76%
Decreased
my stress
levels
72%
Decreased my
interpersonal tension
Raising the bar
24%
76% of caregivers say
doctors should focus
on long-term care
rather than managing
crisis situations
76%
True
False
QG3. Is the following statement true or false for you? 'I would like my family member's doctor to
focus more on long-term care rather than managing crisis situations.'
Base: All respondents (982)
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Raising the bar (cont.)
• 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
• 84% of caregivers agree that wellness programs are valuable in
helping their family member manage their symptoms
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Caregiver Story
[local caregiver]
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[local advocacy group] introduction if
appropriate
36
Insert a photograph of caregiver
and a family member.
Please consult local rules and
regulations for sharing personal
information with the public.
37
Insert a quote from a family
member that represents how that
caregiver feels about the task of
caregiving.
Why is this survey important?
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Relapse
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Effective medication/
Successful treatment
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What can we do?
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Next on: [local psychiatrist]
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Contextualizing
Keeping Care Complete
Findings
[local psychiatrist]
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Key findings: treatment disruption
• Keeping Care Complete reveals the devastating consequences of
relapse, which can occur due to treatment disruption
– For individuals with severe mental illness, relapse can lead to
hospitalization, attempted suicide, and/or incarceration
– For caregivers, family members’ relapse can lead to deteriorated
health and financial situation
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Consequences of relapse on caregiver
• 54% of the caregivers surveyed said that their physical and mental
health worsened following a loved one’s relapse
• Other studies have shown this link
– Rates of caregiver depression have been estimated to range from
38% to 60%. Caregivers of persons with a higher number of
symptoms and level of cognitive impairment experience more
depression
– Similarly, the more severe a loved one’s symptoms, the greater the
number of infectious illnesses, such as respiratory illnesses,
contracted by the caregiver
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Reasons for treatment disruption
•Caregivers say that relapse often occurs due to treatment disruption
•Treatment disruption can be a result of:
•Treatment discontinuation (when a patient decides to stop
taking a medication)
•Switching (when a physician decides to move a patient to a
different medication)
•Patients stop taking their medication because of poor response to
treatment, poor tolerability or insufficient insight into their illness
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Moving from relapses to stabilization
• To reduce the chance of relapse, it is important for individuals to
adhere to the treatment plan prescribed by their physician
– However, doctors, patients and caregivers should closely monitor progress
and recognize when changes to a treatment plan may be needed
• Often caregivers feel that they are excluded from treatment decisions
– Communication between the doctor, patient, and the caregiver – the
therapeutic alliance – is critical to achieving the long-term wellness goals
of the individual with severe mental illness
• Caregivers need to be informed about each treatment option so that
they may be in the best position to help their family members make
best treatment decisions
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Finding and staying on effective
treatment
• As this survey shows, sometimes it takes years and numerous
medications before finding the treatment that works
• When considering switching a patient to a new medication, doctors have
to weigh the risks and benefits of each treatment option before finding
the one that is safe, efficacious and acceptable for an individual
• Many patients forced to switch medications will fail by going into a
psychiatric crisis and requiring emergency room admission followed by a
lengthy hospitalization during this terrifying downward spiral
• Restricting access is not in the interest of the individuals with severe
mental illness, as this can ultimately lead to increased hospitalizations
and utilizations of other services and can also negatively impact a
patient’s quality of life.
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Long-term wellness
• Individuals with mental illnesses can lead productive and fulfilling
lives and have successful relationships and meaningful jobs when
these illnesses are effectively treated
• Proper treatment can relieve symptoms, prevent or delay relapse and
break the “revolving door” cycle
• Proper treatment can also help reduce the frequency and severity of
episodes and can help individuals maintain a good quality of life and
achieve substantial stabilization of symptoms
49
Efficacy matters
• Nearly all caregivers surveyed agree that an effective medication is
needed to manage psychiatric symptoms, before overall well-being
and health can be properly tackled
• Studies have shown that early effective treatment and social
functioning is linked to long-term improvement of subjective wellbeing of patients with severe mental illness
• Scientific advances have enabled us to develop effective medications
and improve treatment practices compared to years ago, as well as to
be able to move people from institutions into communities. This has
become more evident in the past 10 years with the advent of newer
drugs for the treatment of severe mental illness
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Complete Care
• Medication cannot succeed in a vacuum
• Family support and social support, talk therapy, exercise, having
responsibilities and a stable schedule are among key factors that
help keep their family member well
– Doctors must recognize the importance of wellness as a whole, not just
symptom-control
• Doctors should help individuals with severe mental illness follow a
healthy diet, avoid/reduce alcohol and street drugs, limit caffeine
intake, exercise regularly with a gradual start, and go for regular
medical check-ups
• Caregivers can help make sure this happens
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Questions and Answers
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Closing Remarks
[moderator]
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What’s next?
• In order for family members to provide support to individuals with
severe mental illness and help them become productive citizens
– We must provide them with support
– We must allow them the chance to be heard
• Our hope is that, with increased awareness of the needs for access
to psychiatric services, medications and wellness programs among
legislators, medical professionals and the greater public, we will help
alleviate the burden that these devastating illnesses can have on
families
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[local advocacy group] and caregiver
survey
• [local advocacy group] aims to actively support access to care and
wide range of services for those with serious mental illness and their
family members and promote the efforts of local advocacy
associations across the world.
• Keeping Care Complete serves as an important tool to help
accomplish these goals by providing:
– Mental health professionals, policy makers and the broader public
with clearer picture of caregivers and their efforts, hopes and
needs.
– Advocacy associations with better information on how to support
caregivers and fight for improved care and access.
55
What can you do?
• Help us spread the word and fight against reduced access to
treatment and support services by:
– Reporting on the survey results
– Encouraging people to bring mental illnesses out of the shadows
– Visiting www.wfmh.org and [URL of local advocacy group, if
appropriate] to view the survey materials online and learn more
about efforts to improve the quality and accessibility of mental
health services around the world
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And finally, a word of thanks
• Thank you to the many caregivers of individuals with bipolar disorder,
schizophrenia or schizo-affective disorder who participated in this
survey
• Thank you to the approximately 50 associations around the globe that
helped with recruitment for this survey
• And thank you to you for attending this presentation and for helping us
share the perspective of the caregiver with your audiences
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