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1 Template Presentation. 2 Welcome and Introduction [Insert name and affiliation of presenter]

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1 1 Template Presentation

2 2 Welcome and Introduction [Insert name and affiliation of presenter]

3 3 Todays 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 ones mental health treatment

4 4 Todays agenda 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]

5 5 Insert name of WFMH representative

6 6 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 WFMHs 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

7 7 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

8 8 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 worlds understanding of the toll mental illness can take on families

9 9 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 devastatingone 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

10 10 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

11 11 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 self- hatred, impaired thinking, inability to experience joy, diminished energy and preoccupation with death About bipolar disorder Twenty-seven million people suffer from bipolar disorder worldwide

12 12 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

13 13 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

14 14 Introduction to Keeping Care Complete and survey findings [Insert name and affiliation of presenter]

15 15 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 shiftlargely 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

16 16 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 Alzheimers 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

17 17 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.

18 18 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 members 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

19 19 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

20 20 62% 22% 6% 7% 3% Strongly agree Somewhat agree Neither agree nor disagree Somewhat disagree Strongly disagree Their thoughts on stigma Stigma is still a barrier. 84% of caregivers say that stigma and discrimination make it harder for their family member to be well Base: All respondents (982) 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? 84%

21 21 Their thoughts on stigma (cont.) 63% agree that stigma in society about mental illnesses may influence relative's decision to stop taking his/her medication 63% Base: Caregivers whose relatives stopped taking medication (502) 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?

22 22 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

23 23 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. Base: All respondents (982) 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?

24 24 Treatment priorities (cont.) –90% say that an effective medication is needed to control the symptoms of the family member's condition before the patients 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 ones healthcare treatment team has never made them aware that people with severe mental illness are more susceptible than the general population to physical illnesses

25 25 Consequences of Relapse – patient Relapse can lead to hospitalization, suicide and imprisonment of the individuals with severe mental illness. 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)

26 26 Consequences of Relapse caregiver QF5. How did your family member's relapse impact you personally? Base: Experienced relapse Relapse can have devastating consequences for caregivers as well.

27 27 Relapse and treatment disruption Treatment disruption due to change in medication and discontinuation are major causes of relapse. Of the 502 caregivers who say their family member stopped taking his/her medication despite his/her doctors advice, as a result 91% say their loved ones experienced relapse (cont. on second slide) 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)

28 28 Relapse and treatment disruption (cont.) Treatment disruption due to change in medication and discontinuation are major causes of relapse (cont.). Of the 455 caregivers who say their family members medication was changed based on a decision made in cooperation with a doctor, as a result 56% say that this led to relapse. 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)

29 29 Relapse and treatment disruption (cont.) Of the 502 caregivers who say their family member stopped taking his/her medication despite his/her doctors advice, as a result: 71% say their loved ones had to be hospitalized. 71% strongly agree that their family life was disrupted

30 30 Relapse and treatment disruption (cont.) Of the 455 caregivers who say their family members 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

31 31 Impact of Successful Treatment - patient QB5. What was your family member able to accomplish while being treated successfully? Base: Caregivers whose family members are satisfied with medication (756) Caregivers believe that effective treatment has enabled their family members to perform daily tasks more independently among other tasks.

32 32 Impact of Successful Treatment - caregiver The improvement of the family members symptoms improved the quality of life of the caregiver 76% Decreased my stress levels How did your loved ones ability to find an effective treatment affect your own life? 72% Decreased my interpersonal tension 71% Increased quality time spent with family

33 33 Raising the bar 76% of caregivers say doctors should focus on long-term care rather than managing crisis situations 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)

34 34 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

35 35 Caregiver Story [local caregiver]

36 36 [local advocacy group] introduction if appropriate

37 37 Insert a photograph of caregiver and a family member. Please consult local rules and regulations for sharing personal information with the public. Insert a quote from a family member that represents how that caregiver feels about the task of caregiving.

38 38 Why is this survey important?

39 39 Relapse

40 40 Effective medication/ Successful treatment

41 41 What can we do?

42 42 Next on: [local psychiatrist]

43 43 Contextualizing Keeping Care Complete Findings [local psychiatrist]

44 44 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

45 45 Consequences of relapse on caregiver 54% of the caregivers surveyed said that their physical and mental health worsened following a loved ones 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 ones symptoms, the greater the number of infectious illnesses, such as respiratory illnesses, contracted by the caregiver

46 46 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

47 47 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

48 48 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 patients quality of life.

49 49 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

50 50 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 well- being 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

51 51 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

52 52 Questions and Answers

53 53 Closing Remarks [moderator]

54 54 Whats 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

55 55 [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.

56 56 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 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

57 57 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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