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....

w w w . h a r r i s i n t e r a c t i v e . c o m

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Schizophrenia: Public Attitudes, Personal Needs

Research and Data Findings

Conducted for the National Alliance on Mental Illness

REPORT

April 25, 2008

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H A R R I S I N T E R A C T I V E

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

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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……………………………………………………………………………………………..

31323435363738394042

434445464748495051525354555658

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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.

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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.

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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.

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Highlights of Detailed FindingsAwareness 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).

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Highlights of Detailed FindingsAwareness 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).

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Highlights of Detailed FindingsAwareness 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).

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Highlights of Detailed FindingsAttitudes 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).

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Highlights of Detailed FindingsExperiences 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).

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Highlights of Detailed FindingsExperiences 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).

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Highlights of Detailed FindingsExperiences 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).

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Highlights of Detailed FindingsMental 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.

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Detailed Findings

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General Health Status & Awareness

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Physical Health

28%

9%

45%

16%

2%

42%

14%

34%

9%

1%

36%

13%

7%

35%

9%

Poor Fair Good Very Good Excellent

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.

Mental Health

34%

24%

33%

8%

1%

39%

14%

34%

12%

1%

24%

14%

4%

43%

15%

Poor Fair Good Very Good Excellent

General Pop Caregivers People Living with Schizophrenia

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?

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% Extremely/Very Familiar

12%

21%

32%

59%

43%

58%

59%

54%

74%

87%

89%

13%

21%

38%

46%

46%

56%

61%

52%

30%

52%

24%

93%

92%

81%

50%

54%

54%

12%

19%

45%

45%

43%

Lou Gehrig's Disease

Multiple Sclerosis

HIV/AIDS

Heart Disease

Asthma

Cancer

High Blood Pressure

Diabetes

Bipolar Disorder

Depression

Schizophrenia

General PopCaregiversPeople Living with Schizophrenia

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.

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General Public

65%

70%

40%

13%

7%

9%

12%

33%

37%

26%

60%

81%

77%

82%

46%

50% 39%

29%

45%

47%

46%

28%

11%

16%

21%

21%

11%

6%

17%

28%

5%

10%

14%

Asthma

High BloodPressure

Depression

Diabetes

Heart Disease

BipolarDisorder

MultipleSclerosis

Cancer

Lou Gehrig'sDisease

HIV/AIDS

Schizophrenia

Very Concerned Concerned Not Concerned

People Living with Schizophrenia

73%

69%

26%

11%

9%

61%

42%

33%

81%

89%

81%

85%

68%

63% 30%

20%

28%

45%

48%

14%

6%

10%

22%

11%

7%

7%

13%

19%

8%

7%

Caregivers

71%

85%

19%

57%

80%

92%

92%

95%

97%

30%

35%

51%

7%

14%

8%

54%

54%

43%

28%

39%

16%

11%

5%

6%

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.

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23%

100%

43%

64%

89%

94%

85%

88%

96%

93%

97%

13%

21%

25%

39%

43%

64%

67%

72%

80%

82%

83%

87%

88%

90%

34%

38%

98%

100%

13%

77%

69%

98%

Lou Gehrig's Disease

Schizophrenia

HIV/AIDS

Multiple Sclerosis

Bipolar Disorder

Depression

Heart Disease

Asthma

Cancer

Diabetes

High Blood Pressure

General PublicCaregiversPeople Living with Schizophrenia

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.

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6%

100%

2%

32%

21%

4%

2%

1%

7%

5%

94%

14%

14%

3%

5%

3%

3%

3%

5%

5%

10%

19%

21%

22%

5%

3%

12%

Other mentions

Decline to answer

I have schizophrenia

Friend's relative

Neighbor

Acquaintance

Coworker

Clients/consumers

Immediate family member

Friend or classmate

Extended family member

General PopCaregiversPeople Living with Schizophrenia

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.

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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.

81%

16%

4%

Yes, I currently provide care

Yes, in the past, but I do not currently provide care

No, I have never provided this care

69%

31%

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.

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Schizophrenia Treatment. Nearly all people living with schizophrenia who responded to the survey are currently receiving treatment.

95%

5%

Yes

No

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?

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General Knowledge About Schizophrenia

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Prevalence of Schizophrenia vs. Other Conditions. All three groups generally agree on how common various conditions are compared to schizophrenia.

General Public

62%

70%

24%

21%

44%

44%

33%

74%

74%

73%

70%

55% 29%

29%

37%

47%

34%

19%

20%

22%

7%

6%

18%

16%

8%

8%

33%

6%

7%

6%

Lou Gehrig'sDisease

BipolarDisorder

MultipleSclerosis

HIV/AIDS

Depression

Asthma

Cancer

Heart Disease

Diabetes

High BloodPressure

Less common About the same More common

Caregivers

70%

63%

14%

20%

6%

7%

38%

43%

32%

80%

74%

73%

76%

46% 21%

24%

20%

49%

11%

13%

20%

27%

42%

34%

5%

7%

57%

7%

10%

9%

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?

People Living with Schizophrenia

63%

67%

21%

21%

9%

8%

57%

69%

68%

69%

75%

29%

45%

41%

22%

23%

17%

21%

44%

27%

26%

21%

10%

10%

12%

50%

11%

11%

23%

31%

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82%

58%

20%

100%

97%

41%

55%

64%

79%

80%

60%

75%

90%

50%

95%

97%

0%

46%

50%

50%

60%

61%

62%

12%

23%

24%

35%

30%

None/Not sure

Alcohol abuse

Illegal or illicit drug abuse

Difficulty learning

Disorganized speech

Insomnia

Panic attacks

Not knowing that you're ill

Violent behavior

Withdrawing from others

Problems organizing thoughts

Split or multiple personalities

Hallucinations

Delusions

General Pop

Caregivers

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.

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% Strongly/Somewhat Agree

43%

12%

48%

55%

55%

80%

86%

78%

96%

5%

5%

1%

53%

57%

85%

7%

8%

8%

30%

24%

Poor parenting is a cause

Poor people are at higher risk

Schizophrenia = mental retardation.

People with schizophrenia die 25years sooner than others

Use of illegal drugs increases yourrisk

There is no single proven cause

Split personality disorder =schizophrenia

Schizophrenia runs in families

The suicide rate is over 10x higheramong people with schizophrenia

Schizophrenia is an illness

General PopCaregivers

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.

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79%

15%

1%

5%

Not sure

Most people recover

Most people need ongoing care and need to live in hospitals

Most people need ongoing care, but can live independently

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?

33%

67%

Yes

No

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?

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73%

46%

79%

6%

9%

27%

People diagnosed with schizophrenia did something tocause their condition.

Schizophrenia is not a medical condition.

I would be embarassed to tell others if someone in myfamily was diagnosed with schizophrenia.

I would tell my friends if I had been treated forschizophrenia.

Schizophrenia can be managed but not cured.

If a friend was diagnosed with schizophrenia, I would wantthem to tell me.

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.

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49%

19%

34%

79%

21%

23%

24%

71%

76%

77%

80%

80%

I would be afraid for my safety around…

I would feel uncomfortable around...

I would feel uncomfortable working with…

I would feel uncomfortable working for…

I would feel uncomfortable dating…

People diagnosed with schizophrenia can do mostanything others can do if …

Someone who has not received treatment for schizophreniaSomeone who has received treatment for schizophrenia

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.

Living with Schizophrenia

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18 19 20 21 22 23 24 25 26 27 28 29 30 31

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 symptoms20.5 years old

Mental health diagnosis of any kind

24.5 years old

Diagnosed with schizophrenia28.9 years old

Started treatment29.0 years old

Average Delay Between

Symptoms and Treatment8.5 years

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18 19 20 21 22 23 24 25 26 27 28 29 30 31

Females

Males

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?

Firstsymptoms

19.0 years old


23.6 years old

Firstsymptoms

21.8 years old


25.1 years old

Diagnosed with schizophrenia 29.9 years old

Diagnosed with schizophrenia27.9 years old

Started treatment 27.9 years old

Average Delay Between Symptoms

and Treatment8.3 years

Average Delay Between Symptoms

and Treatment8.9 years

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% At Least Somewhat Open 97%

86%

86%

78%

55%

40%

40%

39%

39%

36%

33%

98%

91%

85%

84%

48%

41%

45%

48%

44%

50%

28%

96%

82%

86%

73%

60%

39%

36%

32%

35%

25%

37%

Doctors / health care

Parents

Friends

Extended Family

Spouse / Significant other

Neighbors

Coworkers

Employer

People at your place of worship

Police officers / corrections

Children

All People Living with SchizophreniaMales Living with SchizophreniaFemales Living with Schizophrenia

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?

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21%

28%

44%

49%

13%

18%

29%

19%

18%

18%

39%

38%

35%

30%

24%

20% 45%

60%

62%

57%

60%

32%

45%

52%

57%

19%

34%

19%

25%

22%

20%

15%

32%

0% 20% 40% 60% 80% 100%

People at your place of worship


Children

Parents

Friends

Doctors / Healthcare

Neighbors

Extended family

Coworkers

Employer

Police officers / Corrections

Treated Worse Not Treated Differently Treated Better

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?

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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.

6%

9%

15%

18%

19%

18%

21%

30%

27%

33%

36%

30%

34%

11%

16%

29%

13%

28%

20%

9%

20%

14%

9%

4%

6%

5%

13%

10%

7%

5%

4%

4%

36%

41%

30%

43%

25%

30%

36%

34%

20%

22%

26%

24%

31%

17%

18%

24%

5%

5%

Was afraid to be left alone around me

Appeared very confused or embarassed

Dropped me as a friend

Made negative comments about schizophrenia

Took an interest in my illness or condition

Showed admiration for me

Confided in me about their own challenges or those ofa friend or relative

Treated me as though I lack intelligence

Avoided the topic of my illness

Encouraged my recovery

Always Often Sometimes Rarely Never

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).

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% At Least Somewhat Open

82%

72%

67%

54%

49%

45%

39%

90%

75%

68%

53%

42%

43%

34%

76%

70%

65%

56%

55%

46%

44%

I know I can rely on my mental health care provider to helpme when I need it

I know I can rely on my parents, siblings, or extended familyto help me when I need it

I know I can rely on my friends to help me when I need it

People I relied on became distant after they learned I'd beendiagnosed with schizophrenia

Doctors take my medical problems less seriously once theyknow I have been diagnosed with schizophrenia

I know I can rely on my spouse or significant other to helpme when I need it

It is more difficult for me to get access to physical healthcare once someone finds out I was diagnosed with

schizophrenia

All People Living with SchizophreniaMales Living with SchizophreniaFemales Living with Schizophrenia

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.

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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.

15%

85%

Accepted AssistanceNone of these

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 AssistancePeople Living

with Schizophrenia

Money or financial support 63%

Transportation 56%

Housing 50%

Help with household chores (including laundry or

cleaning)43%

Medication monitoring 42%

Assistance managing money

36%

Meal preparation 35%

Child care 9%

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).

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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.

41%

45%

32%

34%

22%

20%

15%

11%

40%

17%

28%

16%

23%

3%

6%

3%

4%

32%

32%

30%

62%

53%

52%

47%

43%

34% 21%

17%

17%

15%

19%

18%

24%

20%

18%

34%

16%

25%

12%

38%

16%

12%

21% 2%

Religious or spiritual practices

Alcohol/illegal drug abuse

Volunteering

Performing my job duties

School/education

Family participation

Job searching

Housework and dailyhousehold activities

Participating in communitylife

Exercising

Dating/socializing with others

Decreased No difference Increased Does not apply

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48%

72%

76%

77%

76%

85%

83%

88%

88%

85%

92%

93%

95%

96%

52%

28%

24%

23%

24%

15%

17%

12%

12%

15%

8%

7%

5%

4%

Integrated treatment for alcohol or drug abuse

Transportation

Access to a care manager

Assertive community treatment

Holding / having a job

Access to peer support groups

Access to a hospital bed

Integrated medical care for other conditions

Access to housing

Better private health insurance

Access to crisis care

More effective medications / treatment

Access to a psychiatrist

Access to medication / treatment

Total Helpful Least Helpful

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

7.8

7.3

7.2

6.9

6.8

6.5

6.3

4.4

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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.

% Giving a Rating of 8-10

49%

61%

77%

84%

90%

68%

77%

82%

84%

87%

89%

56%

69%

59%

66%

30%

46%

47%

58%

49%

63%

67%

72%

26%

48%

53%

58%

55%


Transportation

Access to a case manager






Access to housing






Females Living with Schizophrenia

Males Living with Schizophrenia

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.

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What People Living with Schizophrenia Want Others to Know About their Experiences.

21%

24%

11%

3%

67%General

mentions

Lack of socialacceptance

Understandingthe illness

Importance ofsupport

Treatmentissues

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

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Caregivers

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Is the person you care for currently diagnosed with schizophrenia?

93%7%

Yes No

Relationship to Person Diagnosed with Schizophrenia

7%

68%

7%

12%

1%

2%

2%

Client

Patient

Extended family

Parent /grandparent

Spouse /signficant other

Sibling / step-sibling

Child / step-child

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?

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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.

32%

31%

14%

9%

5%2%

1%2%3%

With meIndependently, by him/herself or with a roommateIn supported housing facilities/group homeWith family members, but not with meIn a hospital or other mental health institutionIn jail or prisonHe/she is deceasedOtherMy (person cared for) is homeless 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?

Yes59%

No41%

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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.

5%

12%

15%

16%15%

11%

7%

19%

Less than 1 hour 1-2 hours3-5 hours 6-10 hours11-20 hours 21-30 hours31-40 hours More than 40 hours

22%

16%

11%

41%

10%

3 years or less 4-7 years

8-10 years More than 10 years

Not sure/ Decline to answer

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)?

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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.

96%4%

Provided Assistance None of these

Type of Assistance

Money or financial support

80%

Transportation 78%

Assistance managing money

75%

Housing 75%

Medication monitoring 68%

Meal preparation 66%

Help with household chores (including laundry or cleaning)

65%

Child care 8%

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.

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68%

71%

80%

80%

93%

88%

87%

91%

90%

92%

94%

95%

95%

95%

96%

10%

8%

6%

5%

5%

5%

7%

12%

13%

9%

32%

19%

7%

20%

20%


Respite care for care givers

Transportation



Access to housing


Access to a care manager








Total Helpful Least Helpful

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

8.9

8.7

8.3

8.2

8.2

8.1

8.0

8.0

7.0

6.8

6.8

6.2

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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.

1%

21%

21%

27%

39%

41%

42%

55%

59%

66%

89%

94%

65%

77%

None of these

Work program s

Exercise and nutritional support

Assertive com m unity treatm ent

Private insurance coverage

Support groups

Social and com m unity services

Physical health care

Education about schizophrenia

Em ergency care

Mental health care

Medications

Support groups

Education about schizophrenia

% 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

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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.

2%

2%

35%

39%

46%

51%

55%

57%

63%

79%

82%

I do not face any challenges

None of these

Maintaining a job

Maintaining contact w ith friends

Making ends meet financially

Feeling taken advantage of by my (person caredfor)

Finding time to take care of my own health

Managing my time effectively

Finding time for myself

Finding specialized services for my (personcared for)

Determining how to access services for my(person cared for) w ithin the health care system

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.

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Attitudes About Caregiving. Caregivers have both positive and negative attitudes about caregiving.

3%

4%

2%

12%

9%

3%

15%

32%

41%

59%

72%

68%

6%

14%

17%

26%

30%

36%

28%

39%

32%

31%

18%

28%

21%

13%

19%

15%

23%

37%

14%

18%

16%

8%

5%

3%

70%

69%

62%

47%

38%

24%

43%

11%

11%

2%

4%

1%

The media portrays sufferers accurately

I resent my (person cared for)

I feel embarrassed or ashamed of my (person cared for)

I feel guilty because my (person cared for) was diagnosed

I feel as though my (person cared for) doesn't try hard enough

Most people are open to learning more

I feel fearful of my (person cared for)

Advances in care give me hope for my (person cared for)

I appreciate my experiences

I benefit from sharing my experiences with others

I worry about what will happen to my (person cared for)

It is important for me to educate others

Agree Strongly Agree Somewhat Disagree Somewhat Disagree Strongly

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.

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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?

55%

26%

19%

Yes, all of the timeYes, some of the timeNo

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%)

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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.

16%

32%

79%

13%

30%

35%

52%

56%

71%

1%

8%

10%

None of these

Other

Employee assistanceprograms

Neighbors

Coworkers

Place of worship/religious org.

Other mental healthorganization

Government programs

Support groups

Friends

Family

NAMI

Caution: Source of sample is NAMI email lists, so NAMI figure may be inflated

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Perceptions of Public Knowledge About Schizophrenia. The overwhelming majority of caregivers believe the general public knows very little, if anything, about the illness.

1%

4%

66%

28%

A great dealQuite a bit (0% )SomeNot very muchNothing at all

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?

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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.

3%

16%

17%

17%

22%

45%

52%

53%

55%

71%

72%

75%

None of these

Ashamed

Proud

Empowered

Guilty

Uncomfortable

Disappointed

Challenged

Angry

Frustrated

Protective

Sad

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.

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Openness About Caregiving. The overwhelming majority of caregivers have been open with at least some groups of people about providing care, particularly with friends.

2%

10%

18%

38%

39%

52%

53%

59%

68%

68%

74%

75%

79%

89%

I did not inform anyone

Other

Your employer's HR dept.

Pastor

Supervisor

Neighbor

Child

Coworker

Mental health professional

Parents / Grandparents


Physician

Extended family

Friend

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?

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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?

43%

5%

7%

8%

9%

11%

14%

16%

28%

32%

33%

34%

I am open about care giving

Other

People would feel sorry for me

People would look down on me

I don't know how to tell people

People would ask too manyquestions

I'm a private person

It isn't other people's business

I don't think it's fair to my(person cared for)

People wouldn't understand

People would look down on my(person cared for)

My (person cared for) doesn'twant people to know

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.

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What Caregivers Want Others to Know.

27%

42%

18%

21%

15%

13%

36%General

mentions

Lack of socialacceptance

Treatmentissues

Understandingsufferers

Importance ofeducating the

public

Importance ofsupport

Advice to othercaregivers

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

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Demographics


People Living with

Schizophrenia


People Living with

Schizophrenia

Gender Male 49% 17% 45% Education HS or less 36% 7% 17%

Female 51% 83% 55% Some College 33% 36% 46%

Age 18-24 8% 1% 8% College or more 32% 58% 37%

25-34 20% 4% 20% Employment Employed 56% 67% 38%

35-44 18% 10% 28% Not employed 9% 5% 41%

45-54 20% 29% 28% Retired 22% 28% 11%

55-64 16% 38% 14% Student 10% 3% 17%

65+ 17% 17% 1% Homemaker 13% 12% 11%

Mean 46.3 54.8 41.8 Income Less than $35K 25% 16% 65%

Race White 73% 84% 78% $35K- $74,999 30% 30% 18%

Black 11% 2% 4% $75K-$99,999 11% 17% 5%

Hispanic 12% 5% 7% $100K or more 18% 19% 5%

Other 2% 4% 9% Decline to answer 16% 19% 8%

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Custom Demographics

Person Cared For

People Living with

Schizophrenia

Person Cared For

Gov’t Benefits

SSDI 46% 56%Health

InsuranceMedicaid 55%

Medicare 45% 51% Medicare 46%

Medicaid 55% 45% Provided by family member’s employer 24%

Food Stamps 33% 40% Provided by caregiver’s employer 14%

SSI 46% 34% Private, family member paid 12%

Vocationalrehabilitation services

18% 29% Private, caregiver paid 12%

Job placement assistance 18% 20% Provided by the employer of the person living 10%

Public housing 18% 17% Private, paid for by the person living 6%

Welfare 9% 12% Veterans Affairs 5%

Veterans Affairs benefits 5% 10% None of these 2%

None of these 19% 19%People living with schizophrenia and never had insurance

4%

Not sure 1%

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Custom Demographics

PersonCared For

People Living with

Schizophrenia

Person Cared For

People Living with

Schizophrenia

Gender Male 76% 45% Homelessness Yes, ever n/a 31%

Female 24% 55% Yes, now n/a 1%

Age Under 17 4% -- In the past, after diagnosis n/a 18%

18-24 18% 8% In the past, before diagnosis n/a 15%

25-34 35% 20% No n/a 69%

35-44 22% 28%Ever

Experienced…Hospital/Mental Health Institution 63% n/a

45-54 12% 28% Supported Housing/Group Home 44% n/a

55+ 9% 15% Homelessness 35% n/a

Mean 35.5 41.8 Jail/Prison 33% n/a

Veteran Status Yes 16% 7% Drug/Alcohol Rehab 27% n/a

No 84% 93% None of these 20% n/a

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Custom DemographicsPerson

Cared For

People Living with

Schizophrenia

Person Cared For

People Living with

Schizophrenia

Age at First Symptoms Under 17 n/a 34% 35-44 4% 20%

18-24 n/a 28% 45-54 4% 7%

25-34 n/a 16% 55+ 1% --

35-44 n/a 6% Not Sure 9% 7%

45-54 n/a 2% Mean 17.2 28.9

55+ n/a -- Age at First Treatment Under 17 n/a 7%

Not Sure n/a 14% 18-24 n/a 29%

Mean n/a 20.5 25-34 n/a 29%

Age at First Mental Health Diagnosis

Under 17 n/a 21% 35-44 n/a 20%

18-24 n/a 37% 45-54 n/a 5%

25-34 n/a 24% 55+ n/a --

35-44 n/a 12% Not Sure n/a 9%

45-54 n/a 2% Years in Treatment 0-3 29% 21%

55+ n/a -- 4-7 19% 20%

Not Sure n/a 4% 8-10 10% 19%

Mean n/a 24.5 10+ 29% 41%

Age at Schizophrenia Diagnosis

Under 17 18% 7% Not sure 11% 7%

18-24 46% 29% Mean 10.6 12.8

25-34 18% 30%

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schizophrenia diagnosis

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