1. w w w. h a r r i s i n t e r a c t i v e. c o m ©2008, Harris Interactive Inc. All rights reserved. Schizophrenia: Public Attitudes, Personal Needs Research and Data Findings Conducted for the National Alliance on Mental Illness REPORT April 25, 2008

2. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 2  Background & Objectives……………………………………………………………………………….  Methodology….............................................................................................................................  Highlights of Detailed Findings..................................................................................................  Detailed Findings…………………………………………………………………………………………  General Health & Awareness....................................................................................................... Health status…......................................................................................................................... Familiarity with Medical Conditions........................................................................................... Concern About Medical Conditions………………………………………………………………….. Knowing Others with Medical Conditions………………………………………………………….... Relationship to Person Diagnosed with Schizophrenia……………………………………………. Caregiver Status……………………………………………………………………………………….. Schizophrenia Treatment……………………………………………………………………………...  General Knowledge About Schizophrenia…………………………………………………………... Prevalence of Schizophrenia vs. Other Conditions……………………………………………….... Perceived Symptoms of Schizophrenia……………………………………………………………… Views about Schizophrenia…………………………………………………………………………… Schizophrenia Recovery………………………………………………………………………………. Perceptions of Schizophrenia and Disclosure………………………………………………………. Comfort Around People Diagnosed with Schizophrenia............................................................ Table of Contents 4 5 7 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30

3. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 3 Table of Contents (con’t)  Living with Schizophrenia........................................................................................................... Age at First Symptoms, Diagnosis, and Treatment………………………………………………… Openness About Schizophrenia Diagnosis…………………………………………………………. Different Treatment Since Diagnosis………………………………………………………………… Positive and Negative Experiences………………………………………………………………….. Reliability of Various People………………………………………………………………………….. Types of Assistance Accepted……………………………………………………………………….. Engagement in Activities After Diagnosis…………………………………………………………… Helpfulness in Improving Condition………………………………………………………………….. What People Living with Schizophrenia Want Others to Know……………………………………  Caregivers…………………………………………………………………………………………………. Relationship to Person Cared For…………………………………………………………………… Living Situation of the Caregiver and Person Living with Schizophrenia………………………… Time Spent Providing Care…………………………………………………………………………… Types of Assistance Provided………………………………………………………………………... Helpfulness in Improving Condition………………………………………………………………….. Usage & Satisfaction with Caregiving Related Services…………………………………………… Challenges Faced……………………………………………………………………………………... Attitudes About Caregiving……………………………………………………………………………. Availability of Support…………………………………………………………………………………. Sources of Caregiving Support………………………………………………………………………. Perceptions of Public Knowledge About Schizophrenia…………………………………………… Emotions Experienced………………………………………………………………………………… Openness About Caregiving………………………………………………………………………….. What Caregivers Want Others to Know………………………………………………………………  Demographics…………………………………………………………………………………………….. 31 32 34 35 36 37 38 39 40 42 43 44 45 46 47 48 49 50 51 52 53 54 55 56 58 59

4. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 4 Background & Objectives  The National Alliance on Mental Illness (NAMI) commissioned Harris Interactive to conduct research to measure attitudes and awareness of schizophrenia among members of the general adult public, as well as among caregivers and individuals who self report that they have been diagnosed with schizophrenia.  Specifically, this research seeks to: – Identify gaps in knowledge and understanding among the general adult public – Establish a baseline of attitudes toward the illness and those living with it – Understand the experiences of caregivers and individuals living with schizophrenia – Identify areas where more or better services are needed for those living with schizophrenia  The results of this study will be used by NAMI to help raise awareness about schizophrenia with the goal of reducing the stigma associated with this condition and improve the care available to those living with it.

5. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 5 Methodology  The general adult public portion of this research was conducted from February 13 –February 19, 2008, by Harris Interactive via its Harris Poll Online Research Panel, a database that consists of several million people who have agreed to participate in online research projects.  The portions of the research among caregivers and people living with schizophrenia were conducted online between February 11 – February 25, 2008, via NAMI email lists.  A total of 1,012 HPOL respondents (adults), 256 caregivers and 258 people living with schizophrenia qualified and completed the survey. The survey averaged about 17 minutes.  For the general adult public, demographic weighting was used to ensure that the data represent the national population of adult U.S. citizens. Propensity score weighting adjusted for respondents’ propensity to be online.  Data for the caregivers and individuals living with schizophrenia were not weighted.

6. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 6 Notes for reading this report  Throughout this report, the terms “general public” or “adults” refer to members of the general adult public, by which we mean U.S. residents, aged 18 and older.  The term “caregivers” refers to U.S. adults, aged 18 and older who either currently provide care, or who provided care in the past, for someone who has been diagnosed with schizophrenia, schizoaffective disorder, or another schizophrenia spectrum disorder. This does not include anyone providing care in a professional capacity.  The term “people living with schizophrenia” refers to U.S. adults, aged 18 and older who self-report that they have been diagnosed with schizophrenia, schizoaffective disorder, or another schizophrenia spectrum disorder.  In the caregiver section, “person cared for” and refers to the person to whom caregivers provide care.

7. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 7 Highlights of Detailed Findings Awareness Among the General Public  Compared to other medical conditions, familiarity with schizophrenia is very low among the general public. Not surprisingly, caregivers and people living with schizophrenia report much greater familiarity with this condition. – One-quarter of the U.S. adult population (24%) report that they are very or extremely familiar with schizophrenia (Q515). – Of the eleven conditions included in the survey, only Multiple Sclerosis (21%) and Lou Gehrig’s disease (13%) received lower familiarity ratings (Q515). – As would be expected, familiarity with schizophrenia was much higher among caregivers and people living with schizophrenia, with 89% of caregivers and 93% of people living with schizophrenia saying they are extremely or very familiar with the condition (Q515). – Interestingly, not only were caregivers and people living with schizophrenia more familiar with schizophrenia than the general adult population, but they were also much more familiar with the other mental health conditions we tested which included, bipolar disorder and depression (Q515).  74% of caregivers and 81% of people living with schizophrenia are very or extremely familiar with bipolar disorder vs. 30% of the general public.  87% of caregivers and 92% of people living with schizophrenia are very or extremely familiar with depression vs. 52% of the general public.  While familiarity with schizophrenia is low, the level of concern respondents would feel if diagnosed with the condition is relatively high—it is the highest rated non-terminal illness. – Caregivers report the most concern about being diagnosed with schizophrenia (97% rate the concern they would feel at least 8 on a scale from 1 to 10 vs. 81% of people living with schizophrenia and just 60% of the general adult population) (Q517). – Although familiarity with Lou Gehrig’s disease is lower than any other medical condition, it is also among the top 3 conditions that adults are most concerned about (Q517).

8. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 8 Highlights of Detailed Findings Awareness Among the General Public (cont’d)  Adults lack knowledge about schizophrenia, in terms of both general information and symptoms. – While most adults recognize that delusions (80%) and hallucinations (79%) are symptoms of schizophrenia, this is much lower than the percentage of caregivers who believe these are symptoms (97% for delusions and 100% for hallucinations) (Q710). – Additionally, nearly two-thirds (64%) of adults incorrectly believe that split or multiple personalities is a symptom of schizophrenia (Q710). In fact, over half (55%) believe that split personality disorder is another name for schizophrenia. This is compared to 12% of caregivers (Q720). – Members of the general adult public are also less likely to identify cognitive symptoms of schizophrenia (problems organizing thoughts—62%; disorganized speech—35%; difficulty learning—30%) than caregivers (problems organizing thoughts—97%; disorganized speech—82%; difficulty learning—60%) (Q710). – While more than half (57%) of adults agree that the suicide rate among people with schizophrenia is ten times higher than the general population, they do not associate that people diagnosed with schizophrenia die 25 years younger than others (24%) (Q720).  Despite a low level of knowledge about schizophrenia, a large majority of adults share positive attitudes towards individuals with this condition on some important points.  More than eight in ten (85%) people in the general public recognize that schizophrenia is an illness that requires proper medical attention.  Nearly as many (79%) agree that most people diagnosed with schizophrenia can lead independent lives with ongoing care (Q710).

9. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 9 Highlights of Detailed Findings Awareness Among the General Public (cont’d)  A small but significant percentage of adults (21%) say they know someone living with schizophrenia, or have been diagnosed themselves. – Among those who know someone who has been diagnosed with schizophrenia, 3% say they have personally been diagnosed with this condition (Q610). This is approximately 1% of all adults surveyed and seems to be in keeping with other reported estimates on the prevalence of this condition. – Among those who have been diagnosed with schizophrenia, most are currently receiving treatment (93% among those in the general adult public sample who identified that they were diagnosed with schizophrenia and 95% among the sample targeted to people living with schizophrenia) (Q620). – Further, among those who know someone who has been diagnosed with schizophrenia, 19% report that they have cared for someone with schizophrenia, either currently or in the past (Q615).

10. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 10 Highlights of Detailed Findings Attitudes toward People Living with Schizophrenia  While adults tend to report sympathetic views toward people living with schizophrenia, they also acknowledge being uncomfortable around people with schizophrenia. – Although eight in ten (79%) adults say they would want a friend to tell them if they were diagnosed with schizophrenia, less than half (46%) would tell friends if they were diagnosed (Q725).  Additionally, one-quarter (26%) would be embarrassed to tell others if a family member was diagnosed with the condition. – Half of U.S. adults (49%) would feel uncomfortable dating someone who has been diagnosed with schizophrenia who is receiving treatment and one-third (34%) would feel uncomfortable working for such a person (Q730).  Discomfort around individuals living with schizophrenia increases dramatically when thinking about a person who has been diagnosed with schizophrenia and has not received treatment (Q735). – 80% of adults would feel uncomfortable dating someone who had not received treatment, and the same number would feel uncomfortable working for such a person. – Seven in ten adults (71%) would be afraid for their safety around someone who was diagnosed with schizophrenia and had not received treatment (Q735).

11. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 11 Highlights of Detailed Findings Experiences and Attitudes of People Living with Schizophrenia  Individuals living with schizophrenia have a mix of positive and negative experiences in their lives, and this is reflected with how open they are about their condition. – Half of people living with schizophrenia (49%) say that people they know encourage their recovery often or always, and more than half (60%) say that people are rarely or never afraid to be left alone with them (Q830). – Less positively, 44% of individuals living with schizophrenia say that people they know often or always avoid the topic of their illness, and one-third (34%) say people they know often or always treat them as though they lack intelligence.  While the majority of people living with schizophrenia feel they have not been treated differently by children, people at their place of worship, friends, neighbors, spouses/significant others, and coworkers, many report being treated either better or worse by these people (Q810). – People living with schizophrenia are most likely to say they have been treated better by parents (34%) and doctors and health care professionals (32%). They are most likely to say they have been treated worse by police and correctional officers (39%) and employers (38%) (Q810). – This is reflected in that 86% say they have been at least somewhat open with their parents about their condition and 97% have been at least somewhat open with doctors and health care professionals. Conversely, this percentage is just 36% for police officers and 39% for employers (Q805).  Despite a hesitance to open up about their condition around people at their place of worship, religion seems to be an important part of life for many people living with schizophrenia. – While people living with schizophrenia are more likely to report being treated better by people at their place of worship than worse, nearly one-third (30%) say they are not at all open with this group of people about their condition (Q805, Q810). – Despite this lack of openness, religion appears to play an increased role in the lives of people living with schizophrenia after they are diagnosed. Nearly four in ten (38%) say they have increased their level of engagement with religious or spiritual practices since being diagnosed (Q840). – Volunteering is the only other activity that people living with schizophrenia are more likely to have increased than decreased engagement with since being diagnosed with schizophrenia, with one-third (34%) saying they increased engagement and 32% reporting decreased engagement (Q840).

12. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 12 Highlights of Detailed Findings Experiences and Attitudes of Caregivers  Access to support for caregiving is very important to those who provide care for people living with schizophrenia, and the vast majority of caregivers have accessed some form of support. – 90% of caregivers say they benefit from sharing their experiences with others who have similar caregiving responsibilities (Q940). – However, just one in five (19%) feel they always have someone or some place to contact when they need help (Q985).  The vast majority of caregivers have opened up to someone in their lives about their caregiving responsibilities, most often friends or extended family. – 98% of caregivers have opened up to at least one other person, with 89% saying they have talked to friends and 79% saying they have talked to family (Q945). – Those who don’t talk about their caregiving with others cite the wishes of the person they care for (34%), that people would look down on that person (33%) or people’s lack of understanding (32%) as their main reasons (Q950).  Caregivers report a lack of knowledge and understanding about schizophrenia among the general public, a belief which has received significant support in this survey. – Nearly all caregivers (95%) say that the general public knows nothing at all or not very much about schizophrenia, and 96% believe it is important that they educate others about the illness (Q955, Q940). – Most caregivers (91%) also don’t believe that the media portrays the illness accurately, which is likely a reason for the public’s lack of knowledge (Q940).

13. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 13 Highlights of Detailed Findings Experiences and Attitudes of Caregivers (cont’d)  Caregivers face many challenges in caring for their loved ones, in terms of both making sure the person they care for has what they need, as well as in taking care of themselves. – Almost all caregivers have faced challenges caring for loved ones. Only 2% of caregivers say they have not faced challenges (Q980). – The top challenges cited involve accessing services for the person they care(d) for, in terms of determining how to access those services (82%) and finding specialized services (79%) (Q980). – Additionally, many caregivers have been dissatisfied with the services their loved one has received. Eight in ten (80%) caregivers say they are dissatisfied with available work programs, 74% are dissatisfied with social and community services, and 69% are dissatisfied with their loved one’s private health insurance (Q995). – Finding personal time is also a big challenge among caregivers, with 63% reporting this and 57% reporting time management as a challenge (Q980).  Not surprisingly, most caregivers have turned to NAMI for support for their caregiving. – It should be noted that all caregivers surveyed were asked to participate in this study by the National Alliance on Mental Illness, with which they had a preexisting relationship. – Eight in ten caregivers (79%) have turned to NAMI for support, while slightly smaller, but still significant, percentages have turned to family (71%), friends (56%), or support groups (52%) (Q935).

14. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 14 Highlights of Detailed Findings Mental Health Care for People Living with Schizophrenia  Both people living with schizophrenia and caregivers show a strong reliance on mental health care for both treatment and support for schizophrenia. – Eight in ten people living with schizophrenia (82%) say they know they can rely on their mental health provider when needed. This is more than say they know they can rely on their parents and family (72%) or friends (67%) (Q845). – The types of assistance that receives the highest ratings in terms of helpfulness in recovery among people living with schizophrenia are all related to mental health care (Q843).  Access to medications/treatment received a 9.1 on a scale from 1 to 10, followed by access to a psychiatrist (8.9) and more effective medications and treatment (8.6).  The same trend is seen among caregivers, who rate more effective medications and treatment at 9.3, access to medication and treatment at 8.9, and access to a psychiatrist at 8.9. – Interestingly, while drugs and alcohol are often thought to be common problems among people living with schizophrenia, integrated mental health and drug/alcohol treatment receives the lowest rating among both people living with schizophrenia (4.4) and caregivers (6.2) (Q843).  As hypothesized, there seems to be a delay between experiencing symptoms of schizophrenia, being diagnosed with schizophrenia, and receiving treatment for schizophrenia. – Among people living with schizophrenia, the mean age for experiencing the first symptoms is 20.5, for receiving any mental health diagnosis is 24.5, receiving a schizophrenia diagnosis is 28.9, and for receiving treatment for schizophrenia is 29.0 (Q860, Q861, Q862, Q863). – Among caregivers reporting for the person they care(d) for, the mean age for diagnosis is 22.8, several years before what people living with schizophrenia in the sample report (Q1015).  This could be explained when considering that 68% of caregivers report that the person they care for is their child. It is likely that the caregivers were present when symptoms first surfaced and were proactive in seeking diagnosis and treatment.

15. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 15 Detailed Findings 15 ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E

16. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 16 General Health Status & Awareness 16 ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E

17. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 17 Health Status. Caregivers rate their physical health higher than other adults, while people living with schizophrenia rate their physical and mental health lower than the general adult population. Excellent/Very Good (Net) General Pop: 37% Caregivers: 56% People living with Schizophrenia: 20% Fair/Poor (Net) General Pop: 19% Caregivers: 10% People living with Schizophrenia : 44% Excellent/Very Good (Net) General Pop: 58% Caregivers: 53% People living with Schizophrenia: 17% Fair/Poor (Net) General Pop: 19% Caregivers: 13% People living with Schizophrenia : 58% BASE: ALL QUALIFIED RESPONDENTS (Gen Pop N=1012; Caregivers N=256; People Living with Schizophrenia N=258) Q505. How would you describe your physical health overall? Q510. How would you describe your mental health overall?

18. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 18 BASE: ALL QUALIFIED RESPONDENTS (Gen Pop N=1012; Caregivers N=256; People Living with Schizophrenia N=258) Q515. Based on what you have seen, read, or heard, how familiar are you with the following health conditions? Familiarity with Medical Conditions. Caregivers and people living with schizophrenia report much higher familiarity with mental health conditions than the general population. With the exception of heart disease, familiarity is similar across groups with regard to physical health conditions.

19. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 19 Concern About Medical Conditions. Caregivers report higher levels of concern about schizophrenia than any other condition. Additionally, both people living with schizophrenia and caregivers rate their level of concern about other mental health conditions higher than the general public. BASE: ALL QUALIFIED RESPONDENTS (Gen Pop N=1012; Caregivers N=256; People Living with Schizophrenia N=258) Q517. Please rate the level of concern you would feel if you were living with each of the following conditions, where 1 indicates you would be not at all concerned about that diagnosis and 10 indicates you would be extremely concerned about that diagnosis.

20. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 20 BASE: ALL QUALIFIED RESPONDENTS (Gen Pop N=1012; Caregivers N=256; People Living with Schizophrenia N=258) Q605. Have you ever been diagnosed or have you ever known anyone who was diagnosed with any of the following health conditions? Knowing Others with Medical Conditions. Caregivers and people living with schizophrenia are much more likely than the general public to have known someone who has depression or bipolar disorder. For each condition, caregivers are most likely to know someone who has that condition.

21. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 21 Relationship to Person Diagnosed with Schizophrenia. Among those who know someone living with schizophrenia, members of the general public are most likely to know a family member, friend, or classmate. BASE: KNOW SOMEONE DIAGNOSED WITH SCHIZOPHRENIA (General Population N=218; Caregivers N=256; People Living with Schizophrenia N=258) Q610. Whom do you know that has been diagnosed with schizophrenia, schizoaffective disorder, or other schizophrenia spectrum disorders? Please select all that apply.

22. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 22 Caregiver Status. About one in five members of the general public that report knowing someone diagnosed with schizophrenia have also provided care for someone living with schizophrenia, either currently or in the past. In the caregiver sample, about two-thirds are currently providing this care. General Public Caregivers BASE: KNOW SOMEONE DIAGNOSED WITH SCHIZOPHRENIA OTHER THAN SELF (General Population N=218; Caregivers N=256) Q615. Have you ever cared for a person diagnosed with schizophrenia, schizoaffective disorder or other schizophrenia spectrum disorders? This does not include any care provided as part of a professional or formal volunteer experience. 4% of all adults report having provided care for someone diagnosed with schizophrenia.

23. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 23 Schizophrenia Treatment. Nearly all people living with schizophrenia who responded to the survey are currently receiving treatment. BASE: ALL RESPONDENTS LIVING WITH SCHIZOPHRENIA (General Population N=6; People Living with Schizophrenia N=258) Q620. Are you currently being treated for schizophrenia, schizoaffective disorder or other schizophrenia spectrum disorders?

24. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 24 General Knowledge About Schizophrenia 24 ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E

25. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 25 Prevalence of Schizophrenia vs. Other Conditions. All three groups generally agree on how common various conditions are compared to schizophrenia. BASE: ALL QUALIFIED RESPONDENTS (Gen Pop N=1012; Caregivers N=256; People Living with Schizophrenia N=258) Q705. Do you think that schizophrenia is more or less common in the U.S. than each of the following medical conditions?

26. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 26 Perceived Symptoms of Schizophrenia. Both the general public and caregivers have several misperceptions about symptoms related to schizophrenia. Among these misperceptions, nearly two-thirds of adults believe that split or multiple personalities is a symptom of schizophrenia; one in five caregivers also believe this. BASE: ALL WHO HAVE NOT BEEN DIAGNOSED WITH SCHIZOPHREINA (Gen Pop N=1012; Caregivers N=256) Q710. Which of the following do you think are symptoms or schizophrenia? Please select all that apply.

27. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 27 Views about Schizophrenia. Caregivers are less likely to have misperceptions about schizophrenia than the general public, half of whom believe that schizophrenia is the same as split personality disorder. BASE: ALL WHO HAVE NOT BEEN DIAGNOSED WITH SCHIZOPHREINA RESPONDENTS (Gen Pop N=1012; Caregivers N=256) Q720. People have many different views toward schizophrenia. For the following statements, please indicate whether you agree or disagree.

28. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 28 Schizophrenia Recovery. Nearly eight in ten members of the general public believe that while those living with schizophrenia need ongoing care, they can lead independent lives. Two thirds believe that schizophrenia cannot be cured. BASE: ALL GEN POP RESPONDENTS (N=1012) Q723. Which of the following comes closest to your own opinion? BASE: ALL GEN POP RESPONDENTS (N=1012) Q740. Do you believe someone living with schizophrenia can be cured? Can people diagnosed with schizophrenia lead independent lives? Can people diagnosed with schizophrenia be cured?

29. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 29 Perceptions of Schizophrenia and Disclosure. While eight in ten Americans would want a friend to tell them if they were diagnosed with schizophrenia, less than half say they would tell their friends if they themselves were diagnosed, and over one quarter of Americans would be embarrassed to tell others if someone in their family was diagnosed with this condition. BASE: ALL GEN POP RESPONDENTS (N=1012) Q725. Please indicate how strongly you agree or disagree with the following statements.

30. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 30 Comfort Around People Diagnosed with Schizophrenia. In general, respondents would be much more comfortable interacting with people who have received treatment than those who have not. BASE: ALL GEN POP RESPONDENTS (N=1012) Q730. Please indicate how strongly you agree or disagree with the following statements about people who are treated for schizophrenia. Q735. Please indicate how strongly you agree or disagree with the following statements about people with schizophrenia who have not received treatment.

31. Living with Schizophrenia 31 ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E

32. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 32 Age at First Symptoms, Diagnosis, and Treatment. There is an average delay of 8.5 years between the onset of symptoms and the beginning of treatment for schizophrenia. BASE: ALL RESPONDENTS LIVING WITH SCHIZOPHRENIA (N=258) Q860 At what age did you start to experience symptoms of schizophrenia? Q861 At what age did you receive a mental health diagnosis of any kind? Q862 At what age were you diagnosed with schizophrenia? Q863 At what age did you receive treatment for schizophrenia? First symptoms 20.5 years old Mental health diagnosis of any kind 24.5 years old Diagnosed with schizophrenia 28.9 years old Started treatment 29.0 years old Average Delay Between Symptoms and Treatment 8.5 years

33. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 33 Started treatment 30.1 years old Age at First Symptoms, Diagnosis, and Treatment. Males report experiencing symptoms, diagnoses, and treatment about two and a half years earlier than females. BASE: ALL RESPONDENTS LIVING WITH SCHIZOPHRENIA (N=258) Q860 At what age did you start to experience symptoms of schizophrenia? Q861 At what age did you receive a mental health diagnosis of any kind? Q862 At what age were you diagnosed with schizophrenia? Q863 At what age did you receive treatment for schizophrenia? First symptoms 19.0 years old Mental health diagnosis of any kind 23.6 years old First symptoms 21.8 years old Mental health diagnosis of any kind 25.1 years old Diagnosed with schizophrenia 29.9 years old Diagnosed with schizophrenia 27.9 years old Started treatment 27.9 years old Average Delay Between Symptoms and Treatment 8.3 years Average Delay Between Symptoms and Treatment 8.9 years

34. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 34 Openness About Schizophrenia Diagnosis. People living with schizophrenia are most open about their illness with doctors, parents, friends and extended family. Males and females tend to be more open with slightly different groups of people. BASE: ALL RESPONDENTS LIVING WITH SCHIZOPHRENIA (N=258) Q805. How open have you been with the following people about being living with schizophrenia?

35. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 35 Different Treatment Since Diagnosis. People living with schizophrenia are most likely to be treated worse by police officers and people at their place of work. They are most likely to be treated better by parents and doctors. BASE: ALL RESPONDENTS LIVING WITH SCHIZOPHRENIA AND ARE OPEN WITH PEOPLE (N=Dependent on Q805) Q810. Do you feel you are treated better or worse by the following people after you tell them you have been diagnosed with schizophrenia?

36. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 36 Positive and Negative Experiences. People living with schizophrenia have experienced a mix of positive and negative reactions by others since being diagnosed. Most commonly, people have encouraged their recovery or avoided the topic of their illness. BASE: ALL RESPONDENTS LIVING WITH SCHIZOPHRENIA (N=258) Q830. How often have you experienced the following since being diagnosed with schizophrenia? % Ever Experienced 95% 91% 85% 86% 80% 91% 80% 72% 87% 71% Males living with schizophrenia are much more likely to report being dropped by a friend (57% vs. 48% of females).

37. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 37 Reliability of Various People. People living with schizophrenia are more likely to say they can rely on their mental health care provider than on their parents or friends. BASE: ALL RESPONDENTS LIVING WITH SCHIZOPHRENIA (N=258) Q845. Please indicate the extent to which you agree or disagree with the following statements.

38. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 38 Types of Assistance Accepted. Most people living with schizophrenia have accepted some kind of assistance since being diagnosed with schizophrenia, most commonly in the form of financial support. BASE: ALL RESPONDENTS LIVING WITH SCHIZOPHRENIA (N=258) Q837. As an adult, which one of the following types of assistance have you accepted from family members or friends since being diagnosed with schizophrenia? Please select all that apply. Type of Assistance People Living with Schizophrenia Money or financial support63% Transportation56% Housing50% Help with household chores (including laundry or cleaning) 43% Medication monitoring42% Assistance managing money 36% Meal preparation35% Child care9% Males living with schizophrenia are more likely to accept money (69% vs. 58% of females), transportation (66% vs. 47% of females) and housing (55% vs. 42% of females).

39. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 39 Engagement in Activities After Diagnosis. Unlike most other activities, people living with schizophrenia are more likely to say they have increased engagement in religious/spiritual practices and volunteering than that they have decreased. BASE: ALL RESPONDENTS LIVING WITH SCHIZOPHRENIA (N=258) Q840. Since being diagnosed with schizophrenia, has your level of engagement increased or decreased in the following areas? 51% of males living with schizophrenia are much more likely to report a decrease of engagement in job searching (vs. 41% of females). 59% of people living with schizophrenia under 35 years old report a decrease of engagement in job searching.

40. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 40 Helpfulness in Improving Condition. Access to medications and treatment is rated highest by people living with schizophrenia in helping to improve their condition, followed by access to a psychiatrist. BASE: ALL RESPONDENTS LIVING WITH SCHIZOPHRENIA (N=258) Q843. Please review the following and rate each item on a scale of 1 to 10, where 1 indicates it would be the least helpful in managing or improving your condition and 10 indicates it would be the most helpful in managing or improving your condition. Means 9.1 8.9 8.6 8.4 7.9 7.8 7.3 7.2 6.9 6.8 6.5 6.3 4.4

41. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 41 Helpfulness in Improving Condition. Males and females have slightly different views of what is helpful in improving their condition, with females more likely to give higher ratings of helpfulness overall. BASE: ALL RESPONDENTS LIVING WITH SCHIZOPHRENIA (N=258) Q843. Please review the following and rate each item on a scale of 1 to 10, where 1 indicates it would be the least helpful in managing or improving your condition and 10 indicates it would be the most helpful in managing or improving your condition.

42. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 42 What People Living with Schizophrenia Want Others to Know About their Experiences. BASE: ALL RESPONDENTS LIVING WITH SCHIZOPHRENIA (N=258) Q890. What do you think is the most important thing to share about your experience with schizophrenia? “People need to stop watching TV and thinking they know what people who have schizophrenia are like. TV is not real and we do not all act the way the media portrays us.” “I think the most important thing is to accept the disorder like any other medical disorder, that treatment works and that recovery is not only possible, but probable as well.” “After I was diagnosed people started treating me with fear and distain, if I told them my diagnosis. I miss normal human contact with people that I can confide in about my medical problems.” “Having a strong support group of friends and family is extremely important.” “People can be successful in life with being diagnosed with a schizoaffective disorder. I've gradually from college and have become a CPA since being diagnosed.” Selected Verbatims

43. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 43 Caregivers 43 ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E

44. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 44 Relationship to Person Cared For. People living with schizophrenia for whom caregivers provide care are nearly all currently diagnosed with schizophrenia. Over two-thirds are the children or step-children of caregivers. BASE: ALL QUALIFIED CAREGIVERS (N=256) Q905. Please indicate your relationship to the person diagnosed with schizophrenia whom you cared for most recently. Q910. Is your (person cared for) currently diagnosed with schizophrenia?

45. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 45 Living Situation of the Caregiver and Person Living with Schizophrenia. About one-third of caregivers currently live with the person they provide care for, and the majority of those who live in the same household do so because of their loved one’s illness. BASE: ALL QUALIFIED CAREGIVERS (N=256) Q925. Where does your (person cared for) currently live? BASE: LIVES WITH PERSON CARED FOR (N=81) Q930. Did you decide to live in the same household as your (person cared for) because he/she was diagnosed with schizophrenia? Where does the person you care for live? Do you live together due to schizophrenia?

46. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 46 Time Spent Providing Care. About four in ten caregivers say they have provided care for someone living with schizophrenia for more than ten years. About one in five spending more than forty hours each week providing care. Number of Years Providing Care (Mean=13.1) Number of Hours Per Week Providing Care (Mean=17.2) BASE: ALL QUALIFIED CAREGIVERS (N=256) Q915. For how long have you cared/did you car for your (person cared for)? Q920. On average, about how many hours per week do/did you spend caring for your( person cared for)?

47. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 47 Types of Assistance Provided. The vast majority of caregivers have provided assistance to the person they care for, most commonly in the form of financial support or transportation. Type of Assistance Money or financial support 80% Transportation78% Assistance managing money 75% Housing75% Medication monitoring68% Meal preparation66% Help with household chores (including laundry or cleaning) 65% Child care8% BASE: ALL QUALIFIED CAREGIVERS (N=256) Q932. As an adult, which one of the following types of assistance have you offered your (person cared for) while being treated for schizophrenia? Please select all that apply.

48. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 48 Helpfulness in Improving Condition. Similar to people living with schizophrenia, caregivers report that more effective mediations and treatment would be most helpful in improving the condition of the person they care for. Integrated drug and alcohol abuse treatment receives the lowest average rating by caregivers as well. BASE: ALL QUALIFIED CAREGIVERS (N=256) Q986. Please review the following list and rate each item on a scale of 1 to 10, where 1 indicates it would be/ would have been the least helpful in managing or improving your (person cared for)’s condition and 10 indicates it would be/would have been the most helpful in managing or improving your (person cared for)’s condition. Please answer these as they relate to the services and supports for your (person cared for). Means 9.3 9.0 8.9 8.7 8.3 8.2 8.1 8.0 7.0 6.8 6.2

49. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 49 BASE: ALL QUALIFIED CAREGIVERS (N=256) Q990. Which of the following services and treatments have you or your (person cared for) had access to or used to help manage your (person cared for) ’s schizophrenia? Please select all that apply. % Very/Somewhat Satisfied with Each Service 72% 62% 50% 30% 42% 38% 46% 26% 34% 31% 32% 45% 20% Usage & Satisfaction with Caregiving Related Services. Caregivers report higher levels of satisfaction with services for themselves than with services for the person they care for. Medications are the most commonly used service. % Using Each Service Services for Caregivers Services for People Living with Schizophrenia

50. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 50 Challenges Faced. The overwhelming majority of caregivers have faced some challenges in providing care, most commonly in determining how to access health care services and in finding specialized services for the person they care for. BASE: ALL QUALIFIED CAREGIVERS (N=256) Q980. Which of the following challenges have you faced when trying to provide care for your (person cared for) ? Please select all that apply. 84% of caregivers who have provided care for more than 5 years report finding specialized services as a challenge. 88% of those who have provided care for more than 5 years report determining how to access services is a challenge.

51. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 51 Attitudes About Caregiving. Caregivers have both positive and negative attitudes about caregiving. BASE: ALL QUALIFIED CAREGIVERS (N=256) Q940 Please indicate how much you agree or disagree with the following statements about caring for someone with schizophrenia.

52. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 52 Availability of Support. About three in four caregivers feel they have someone or some place to turn to when they need support, however, just one in five feel they have this support all of the time. BASE: ALL QUALIFIED CAREGIVERS (N=256) Q985 Do/Did you feel that you have/had someone or some place to contact when you need/needed help related to caregiving? Yes (Net): 74%. Those who have provided care for more than five years are more likely to have someone to turn to (76%) than those who have provided care for five years or less (69%). Those who provide(d) care for 10 hours a week or less are more likely to have someone to contact (79%) than those who spend more time on caregiving responsibilities (69%)

53. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 53 Sources of Caregiving Support. Caregivers turn to NAMI for support, as well as to family and friends. BASE: ALL QUALIFIED CAREGIVERS (N=256) Q935 Besides mental health professionals such as social workers or psychologists, to which of the following have you turned for support for your caregiving? Please select all that apply. Caution: Source of sample is NAMI email lists, so NAMI figure may be inflated

54. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 54 Perceptions of Public Knowledge About Schizophrenia. The overwhelming majority of caregivers believe the general public knows very little, if anything, about the illness. Not Very Much / Nothing at All: 94% BASE: ALL QUALIFIED CAREGIVERS (N=256) Q955. How much do you think people who have no personal experience with schizophrenia know about the illness?

55. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 55 Emotions Experienced. The most common emotion felt by caregivers when hearing someone talk about the person they care for or others living with schizophrenia is sadness, followed by protective, and frustrated. BASE: ALL QUALIFIED CAREGIVERS (N=256) Q970. Which of the following have you experienced when hearing someone talk about your (person cared for) or people living with schizophrenia? Please select all that apply. 68% of caregivers who provide care for a person in treatment for more than 5 years and 67% of those who have provided care for more than 5 years and feel sad when hearing someone talk about the person they care for or people living with schizophrenia. 58% of caregivers who have provided care for more than 5 years report feeling challenged.

56. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 56 Openness About Caregiving. The overwhelming majority of caregivers have been open with at least some groups of people about providing care, particularly with friends. BASE: ALL QUALIFIED CAREGIVERS (N=256) Q945. Excluding the person you care/cared for, did you inform any of the following that you are/were caring for someone diagnosed with schizophrenia? Please select all that apply. Q950. Which of the following reasons, if any, have kept you from telling people about your (person cared for)’s condition and your care for him or her? Whom do you tell?

57. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 57 Openness About Caregiving. Among those who haven’t told someone, the most common reasons given relate to protecting the person they care for. Just four in ten caregivers say they are completely open about their caregiving. BASE: ALL QUALIFIED CAREGIVERS (N=256) Q945. Excluding the person you care/cared for, did you inform any of the following that you are/were caring for someone diagnosed with schizophrenia? Please select all that apply. Q950. Which of the following reasons, if any, have kept you from telling people about your (person cared for)’s condition and your care for him or her? Why don’t you tell people? 57% of all caregivers report having a reason for not telling others about the illness the person they care for lives with.

58. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 58 What Caregivers Want Others to Know. BASE: ALL QUALIFIED CAREGIVERS (N=256) Q997. What do you think is the most important thing to share about your experience caring for someone with schizophrenia? “The need for antipsychotic meds that have less physical side effects so that the patient is more willing to stay on the meds.” “It really helps to get counseling for yourself, because there are times when the stress transferred to the caregiver is overwhelming.” “The public needs to fully understand Schizophrenia first, before people can begin to grasp the toll this illness takes on the individual affected by this disease and the physical and mental strain experienced by the family members caring for the person afflicted by Schizophrenia.” “Stigma is a big issue. Most people don't understand.” “The most important thing for me to realize was that my sister truly was not responsible for her actions.” “Prepare to be challenged by the disease, the person, and the system.” Selected Verbatims

59. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 59 Demographics 59 ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E

60. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 60 Demographics General Public Caregivers People Living with Schizophrenia General Public Caregivers People Living with Schizophrenia GenderMale49%17%45%EducationHS or less36%7%17% Female51%83%55%Some College33%36%46% Age18-248%1%8%College or more32%58%37% 25-3420%4%20%EmploymentEmployed56%67%38% 35-4418%10%28%Not employed9%5%41% 45-5420%29%28%Retired22%28%11% 55-6416%38%14%Student10%3%17% 65+17% 1%Homemaker13%12%11% Mean46.354.841.8IncomeLess than $35K25%16%65% RaceWhite73%84%78%$35K- $74,99930% 18% Black11%2%4%$75K-$99,99911%17%5% Hispanic12%5%7%$100K or more18%19%5% Other2%4%9%Decline to answer16%19%8%

61. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 61 Custom Demographics Person Cared For People Living with Schizophrenia Person Cared For Gov’t Benefits SSDI46%56% Health Insurance Medicaid55% Medicare45%51%Medicare46% Medicaid55%45%Provided by family member’s employer24% Food Stamps33%40%Provided by caregiver’s employer14% SSI46%34%Private, family member paid12% Vocational rehabilitation services 18%29%Private, caregiver paid12% Job placement assistance18%20%Provided by the employer of the person living10% Public housing18%17%Private, paid for by the person living6% Welfare9%12%Veterans Affairs5% Veterans Affairs benefits5%10%None of these2% None of these19% People living with schizophrenia and never had insurance 4% Not sure1%

62. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 62 Custom Demographics Person Cared For People Living with Schizophrenia Person Cared For People Living with Schizophrenia GenderMale76%45%HomelessnessYes, evern/a31% Female24%55% Yes, nown/a1% AgeUnder 174%-- In the past, after diagnosisn/a18% 18-2418%8% In the past, before diagnosisn/a15% 25-3435%20%Non/a69% 35-4422%28% Ever Experienced… Hospital/Mental Health Institution63%n/a 45-5412%28%Supported Housing/Group Home44%n/a 55+9%15%Homelessness35%n/a Mean35.541.8Jail/Prison33%n/a Veteran StatusYes16%7%Drug/Alcohol Rehab27%n/a No84%93%None of these20%n/a

63. ©2008, Harris Interactive Inc. H A R R I S I N T E R A C T I V E 63 Custom Demographics Person Cared For People Living with Schizophrenia Person Cared For People Living with Schizophrenia Age at First SymptomsUnder 17n/a34%35-444%20% 18-24n/a28%45-544%7% 25-34n/a16%55+1%-- 35-44n/a6%Not Sure9%7% 45-54n/a2%Mean17.228.9 55+n/a--Age at First TreatmentUnder 17n/a7% Not Suren/a14%18-24n/a29% Meann/a20.525-34n/a29% Age at First Mental Health Diagnosis Under 17n/a21%35-44n/a20% 18-24n/a37%45-54n/a5% 25-34n/a24%55+n/a-- 35-44n/a12%Not Suren/a9% 45-54n/a2%Years in Treatment0-329%21% 55+n/a--4-719%20% Not Suren/a4%8-1010%19% Meann/a24.510+29%41% Age at Schizophrenia Diagnosis Under 1718%7%Not sure11%7% 18-2446%29%Mean10.612.8 25-3418%30%