Transcript:

Hello, I’m Dr Leslie Citrome, Clinical Professor of Psychiatry and Behavioral Sciences at New York Medical College in Valhalla, New York. Welcome to our program on schizophrenia.  

Schizophrenia is a complex and chronic mental health disorder that affects approximately 24 million individuals worldwide, with significant implications for both caregivers and communities.

The burden of schizophrenia is not solely borne by those diagnosed; it extends to caregivers who provide essential support and to the broader community that interacts with affected individuals.  

This dual burden highlights the necessity of addressing the multifaceted impacts of schizophrenia to enhance the quality of care and promote societal integration, and improve quality of life.  

Caregivers of individuals with schizophrenia often experience profound emotional and psychological burdens. Like many mental health conditions, schizophrenia is notable for stigma. The stigma associated with mental illness, particularly schizophrenia, significantly affects both patients and caregivers, leading to social isolation and discrimination. This stigma can deter individuals from seeking necessary treatment and support, further entrenching the challenges faced by those affected.

Furthermore, many caregivers report a lack of access to resources specifically designed to support them, including training and respite care, which can exacerbate their challenges.

US-based studies, such as the AARP 2020 Caregiving Survey, reveal that caregivers frequently feel isolated and unsupported, underscoring the need for targeted interventions to improve their experiences.

Schizophrenia is not only expensive to the patient, at around $88 000 a year for care, but it is also estimated to cost the caregiver around $29 000 in time and resources annually. The combination of stigma, lack of knowledge, and financial strain leads to caregivers facing elevated levels of stress, depression, and burnout, which can significantly affect their mental health and overall well-being.

Financial strain is another critical aspect; caregivers often incur out-of-pocket expenses and may miss work opportunities due to their caregiving responsibilities, leading to economic hardship.

On a broader scale, some of the economic factors fall on the community. Economically, the burden of untreated or poorly managed schizophrenia extends to healthcare systems and results in productivity losses, creating a ripple effect that impacts community resources. Public health challenges arise as local resources, including shelters, emergency services, and law enforcement, become strained under the weight of untreated mental health issues. Addressing these community impacts is essential for fostering a supportive environment for individuals with schizophrenia and their caregivers.

To mitigate the challenges faced by caregivers and communities, it is imperative to advocate for community-level interventions, as such campaigns can significantly influence public perceptions toward mental health conditions.

Public awareness campaigns can help reduce stigma and promote understanding of schizophrenia.  

Additionally, integrated care models that encompass both mental health and social support services have demonstrated success in improving healthcare outcomes, laying a framework for interventions in schizophrenia.

There is a pressing need for caregiver training programs, financial assistance, and the establishment of community mental health centers that provide comprehensive support. For those patients where hospitalizations have become frequent, programs such as Assertive Community Treatment, can be literally lifesaving. Involvement of advocacy groups such as the National Alliance on Mental Illness (NAMI), is essential.

I hope this has been helpful to you in understanding schizophrenia and the challenges that our patients and caregivers face.

For more information, please listen to the other podcasts in this series: 


References:

  1. World Health Organization. Schizophrenia. January 10, 2022. Accessed December 30, 2024. https://www.who.int/news-room/fact-sheets/detail/schizophrenia  
  2. Bachtiar A, Windarwati HD, Keliat BA, et al. The fight against stigma: multilevel stigma interventions in schizophrenia patients. J Pub Health Res. 2020;9:1883. doi:10.4081/jphr.2020.1883  
  3. AARP, National Alliance for Caregiving. Caregiving in the U.S. May 14, 2020. Accessed December 30, 2024. https://www.aarp.org/pri/topics/ltss/family-caregiving/caregiving-in-the-united-states/  
  4. Muralidharan A, Lucksted A, Medoff D, Fang LJ, Dixon L. Stigma: a unique source of distress for family members of individuals with mental illness. J Behav Health Serv Res. 2016;43(3):484-93. doi:10.1007/s11414-014-9437-4  
  5. Kadakia A, Catillon M, Fan Q, et al. The economic burden of schizophrenia in the United States. J Clin Psychiatry. 2022;83(6):22m14458. doi:10.4088/JCP.22m14458  
  6. Corrigan PW, Shapiro JR. Measuring the impact of programs that challenge the public stigma of mental illness. Clin Psychol Rev. 2010;30(8):907-922. doi:10.1016/j.cpr.2010.06.004  
  7. Maghsoudi T, Cascon-Pereira R, Lara ABH. The role of collaborative healthcare in improving social sustainability: a conceptual framework. Sustainability. 2020;12(8):3195. doi:10.3390/su12083195  
  8. Bond GR, Drake RE. The critical ingredients of assertive community treatment. World Psychology. 2015;14:2.  
  9. National Alliance on Mental Illness. Schizophrenia & Psychosis Guide: Care, Advocacy, Engagement. 2023. Accessed January 20, 2025. https://www.nami.org/support-education/publications-reports/guides/schizophrenia-psychosis-guide-care-advocacy-engagement/