Caregivers of People with Schizophrenia Need Support, Not Stigma

New Online Survey Suggests Support is Important for Caregivers’ Well-being

PRINCETON, N.J. & DEERFIELD, Ill.--()--Despite growing awareness of mental illness nationally, serious mental illnesses, such as schizophrenia, continue to be associated with significant stigma – not just for the person directly affected, but also for the caregiver. 1,2 Caregivers act as advocates, collaborate with treatment team members and often are the main support in the daily life of their loved one with schizophrenia. 3,4 However, results of a recent survey show that caregivers have experienced emotional burden and social isolation as a result of caring for their loved one.

The results were collected as part of a recent online survey conducted in the U.S. between January 20 and 27, 2014 by Harris Poll on behalf of Otsuka America Pharmaceutical, Inc. and Lundbeck among 302 unpaid caregivers to adults with schizophrenia.

“Caring for a loved one with schizophrenia has considerable challenges because of the stigma associated with the disease.5 Many people don’t understand schizophrenia and they may fill those gaps with fear.5,6 It’s a unique caregiving experience in that sense,” said Randye Kaye, mental health advocate, actress and author of Ben Behind His Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope. Kaye is the primary caregiver for her son, who was diagnosed with schizophrenia about 12 years ago. Her book is a memoir of her experience as a mother and caregiver to her son, from the onset of his battle with schizophrenia along the hopeful road to managing his disease.

Stigma May Lead to Challenges in Finding Support

Results from the survey suggest that caring for someone with schizophrenia can be associated with significant challenges. Of caregivers surveyed, 79 percent said their loved one has experienced isolation and 57 percent said they have experienced isolation as a result of their loved one’s schizophrenia. Sixty percent said they feel it may be easier to care for someone with a physical disease, such as heart disease or cancer, than it is to care for their loved one with schizophrenia.

Perhaps because of this stigma, many of those surveyed also feel they lack support from others and from their communities. Fifty-eight percent feel they do not get a lot of support from their local community in relation to caring for their loved one with schizophrenia, 79 percent said they wish there were more opportunities to talk to others about caring for someone with schizophrenia, and 57 percent have felt nobody understands what they are going through.

Despite challenges, 94 percent of caregivers surveyed said they try to maintain a positive outlook and 68 percent would likely be as involved in their loved one’s care even if someone else was willing and able to be a caregiver. Kaye knows firsthand how important the caregiver’s role is in contributing to successful outcomes for a loved one with schizophrenia.

“I know from experience the physical and emotional burdens of caring for someone with schizophrenia, but I also know how critical my involvement is to my son’s success,” said Kaye. “I’ve learned that a caregiver’s informed input can be an incredibly valuable contribution to an effective treatment team. That’s why it’s important to develop strong and trusted relationships with members of your loved one’s treatment team.”

Support Is Important to Overall Satisfaction of Caregivers

Feeling supported is key for caregivers, said Kaye. There is a notable difference between caregivers who feel satisfied by the support that’s available and those who do not, according to results of the survey. Compared to those who are dissatisfied by available support, caregivers who are satisfied are:

  • More likely to feel grateful (39 percent v. 23 percent), content (27 percent v. 11 percent) and proud (38 percent v. 24 percent) about being a caregiver for their loved one.
  • Less likely to feel stressed (36 percent v. 66 percent), challenged (40 percent v. 58 percent), frustrated (25 percent v. 54 percent), overwhelmed (28 percent v. 40 percent), and sad (25 percent v. 40 percent).
  • Less likely to feel that nobody understands what they’re going through (49 percent v. 65 percent).

This reinforces that action is required to help provide caregivers with the support and resources they need. May is Mental Health Awareness Month, and it’s an ideal time to address this important topic.

“If you are caring for someone with schizophrenia, you are not alone. There are others out there who are going through what you’re going through, and there are resources that can help,” said Kaye.

If you or someone you know is struggling to provide care for a loved one with schizophrenia, visit WeLiveWithSZ.com to register for resources and find the support you deserve.

Harris Poll conducted the study on behalf of Otsuka America Pharmaceutical, Inc. and Lundbeck. The survey was administered online within the United States between January 20 and 27, 2014, among 302 adults who provide unpaid care for an adult with schizophrenia. Data were not weighted and are only representative of those who completed the survey. Certain percentages include net values (such as those who selected “somewhat agree” and “strongly agree” on a four-point agree/disagree scale).

Otsuka America Pharmaceutical, Inc.

Otsuka America Pharmaceutical, Inc. (OAPI) is an innovative, fast-growing healthcare company that commercializes Otsuka-discovered and in-licensed products in the U.S. With a strong focus on neuroscience, oncology, cardio-renal and medical devices, OAPI is dedicated to improving the health and quality of human life. For more information, visit www.otsuka-us.com.

OAPI is a subsidiary of Otsuka America, Inc. (OAI), a holding company established in the U.S. in 1989. OAI is wholly owned by Otsuka Pharmaceutical Co., Ltd. The Otsuka Group employs approximately 42,000 people globally and its products are available in more than 80 countries worldwide. Otsuka welcomes you to visit its global website at https://www.otsuka.co.jp/en/.

H. Lundbeck A/S

H. Lundbeck A/S (LUN.CO, LUN DC, HLUYY) is a global pharmaceutical company specialised in brain diseases. For more than 50 years, we have been at the forefront of research within neuroscience. Our development and distribution of pioneering treatments continues to make a difference to people living with brain diseases. Our key areas of focus are alcohol dependence, Alzheimer's disease, depression/anxiety, epilepsy, Huntington's disease, Parkinson's disease, schizophrenia and stroke.

Our approximately 6,000 employees in 57 countries are engaged in the entire value chain throughout research, development, production, marketing and sales, and are committed to improving the quality of life of people living with brain diseases. Our pipeline consists of several late-stage development programmes and our products are available in more 100 countries. We have research centres in China, Denmark and the United States, and production facilities in China, Denmark, France, Italy and Mexico. Lundbeck generated revenue of approximately DKK 15 billion in 2013 (EUR 2.0 billion; USD 2.7 billion).

For further information please visit www.lundbeck.com.

References:

  1. FACT SHEET: President Obama Applauds Commitments to Raise Awareness and Increase Understanding of Mental Health at White House Conference. The White House. 2013. Available at: http://www.whitehouse.gov/the-press-office/2013/06/03/fact-sheet-president-obama-applauds-commitments-raise-awareness-and-incr. Accessed March 3, 2014.
  2. Suresky, M. J., Zauszniewski, J. A. and Bekhet, A. K. Factors Affecting Disruption in Families of Adults With Mental Illness. Perspectives in Psychiatric Care. 2013; 49.
  3. Shor, R. & Birnbaum, M. Meeting Unmet Needs of Families of Persons with Mental Illness: Evaluation of a Family Peer Support Helpline.Community Mental Health Journal. 2012.
  4. Chen, F. & Greenberg, J. A Positive Aspect of Caregiving: The Influence of Social Support on Caregiving Gains for Family Members of Relatives with Schizophrenia. Community Mental Health Journal. 2004; 40: 423-435.
  5. González-Torres, et al. Stigma and Discrimination Towards People With Schizophrenia and Their Family Members. Social Psychiatry and Psychiatric Epidemiology. 2007, 42: 14-23.
  6. Understanding Schizophrenia and Recovery. NAMI. 2008. Available at: http://www.nami.org/Template.cfm?Section=By_Illness&template=/ContentManagement/ContentDisplay.cfm&ContentID=7279

April 2014 09US14EUC0035

Contacts

Media Contacts:
Otsuka America Pharmaceutical, Inc.
Kimberly Whitefield
kimberly.whitefield@otsuka-us.com
+1 609 535 9259
or
Lundbeck
Ashleigh Duchene
aduc@lundbeck.com
+1 847 282 1164

Release Summary

Results from a recent survey suggest that caring for someone with schizophrenia can be associated with significant challenges.

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Contacts

Media Contacts:
Otsuka America Pharmaceutical, Inc.
Kimberly Whitefield
kimberly.whitefield@otsuka-us.com
+1 609 535 9259
or
Lundbeck
Ashleigh Duchene
aduc@lundbeck.com
+1 847 282 1164