An Exploration of Film Representations of Neurocognitive Disorder

CALIFORNIA STATE UNIVERSITY, NORTHRIDGE Popular Culture as Public Health: An Exploration of Film Representations of Neurocognitive Disorder A graduate project submitted in partial fulfillment of the requirements For the degree of Master of Social Work By Claudia Agee Hughes in collaboration with Danielle Dawidowicz May 2018 The graduate project of Claudia Agee Hughes is approved: _______________________________________ __________ Dr. Wendy Ashley Date _______________________________________ ___________ Dr. Judith A. DeBonis Date _______________________________________ ___________ Dr. Alejandra Acuna, Chair Date California State University, Northridge ii Dedication To Zephrine Agee, my mother, and Cora Nichols, my great grandmother from whom I learned faith, kindness, endurance, perseverance, resilience, service, and unconditional love by how they lived life. To Allen C. Hughes Jr., my husband, for being a continuous source of love, encouragement, and support in life and the graduate school journey. You are a blessing- thank you. iii Table of Contents Signature Page ii Dedication iii Abstract v Introduction 1 Method 6 Results 13 Discussion 20 References 26 Appendix A: Graduate Addendum required for Joint Projects 29 iv Abstract Popular Culture as Public Health: An Exploration of Film Representations of Neurocognitive Disorder By Claudia Agee Hughes Master of Social Work The objective of this study was to track the representation of Neurocognitive Disorder (NCD), commonly known as dementia, in major motion pictures over the past 40-50 years looking specifically for factors leading to the creation of stigma. The hypothesis was that representations would get better over time but that stereotypes would still be pervasive across films made within the past ten years. Using the Link and Phelan (2006) stigma framework, films were analyzed for representations that contribute to the development of stigma from two vantage points- within the film and between film and audience. This study was qualitative in its design and used archival data (films). Findings showed instances that contribute to the development of stigma were prominent across films from each decade but, that instances of partnering with the character with NCD were also prominent. The minutes that the film is from the point of view of the person with NCD increased over time and this variable impacted the tone of the stigmatizing and partnering messages. Additionally, negative representations of nursing facilities, internalized stigma, and a history of undesirable personality characteristics (in the character with NCD) were widespread across films. Overall, film representations did get v better over time but representations that contribute to the development of stigma were still clear and prominent in films made within the past ten years. viii Introduction The forward march of time means that we will all age and with that comes worries about what that process will bring. Will I be able to walk? Will I lose my sight? Will I lose my mind? While most older adults will never develop dementia, nearly half of the over 65 population (71 million Americans by 2030) still assume that it is a normal part of aging (Chapman, Williams, Strine, Anda, & Moore, 2006; McParland, Devine, Innes, & Gayle, 2012). Misconceptions about dementia are prevalent and the clinical picture of dementia is far more nuanced, in terms of symptoms and functional abilities, than the pervasive representations in popular culture. Literature review. Most dementia historians agree that our current popular understanding of dementia was born in the late 1970s, largely due to public awareness campaigns from the Alzheimer’s Association after its founding in 1979 (Zeilig, 2013; Gubrium, 1986). These early campaigns focused only on the seriousness of the disease and referred to dementia as “A Living Death” and “Funeral that Never ends” (Gubrium, 1986). This use of negative terminology continues today and words like epidemic, demons, battle, darkness and burden are still pervasive in descriptions of dementia (Zeilig, 2013). The stereotypes of individuals with dementia created by these negative terms are still commonly held today (McParland et al., 2012). With the fifth edition of the Diagnostic and Statistically Manual (DSM 5), the American Psychological Association changed the term for dementia to Neurocognitive Disorder (NCD) in part to distance the condition from the stigma associated with “dementia.” The term dementia is often synonymous with Alzheimer’s Disease but in 1 reality NCD is an umbrella term for many different symptoms and functional impairments across behavioral, cognitive, and emotional domains (Zeilig, 2013; Chapman et al., 2006; American Psychological Association, 2013). While it is true that Alzheimer’s Disease is the most frequently diagnosed form of NCD, the DSM 5 also acknowledges NCD due to Lewy Body Disease, Parkinson’s Disease, Huntington’s Disease, and Vascular Diseases– among others (American Psychological Association, 2013). Neurocognitive Disorder is now also understood as a spectrum that can have many different causes and look very different at each stage– facts often lacking from the common understanding of this condition (Anderson, Day, Beard, Reed, & Wu, 2009). Development of Stigma Negative representations of individuals with NCD are part of the development and perpetuation of stigma against this condition and those who suffer with it (Van Gorp & Vercruysse, 2012). Consistently negative representations of individuals with a given condition are known to lead to higher levels of stigma and prejudice against a given group (Klin & Lemish, 2008). Films depicting individuals with NCD rarely show any level of capacity and leave the audience pitying a character who has become completely dependent (Gerritsen, Kuin, & Nijboer, 2014). Even though there is growing understanding in the academic community that the course of the disease is different for each individual, popular opinions continue to lump newly diagnosed, high functioning individuals with those who have been living with NCD for many years and are much more dependent on caregivers (Chapman et al., 2006; Khaw, 1994; McParland et al., 2012). While the terminal impact of NCD cannot be denied, the focus on the end stage of a long disease process in these films works to create and maintain stigma by distancing 2 the viewer from the individual with NCD and presenting the illness as a fate worse than death (Zeilig, 2013). Stigma is already recognized as being a factor in morbidity and mortality in large part due to the many negative effects stigma has on physical, emotional, and mental health (Hatzenbuehler, Phelan, & Link, 2013). Experience with stigma is linked with maladaptive systems of coping and depressive symptoms, which have already been associated with NCD for over a century, putting this group at higher risk (Hatzenbuehler et al., 2013; Gubrium, 1986). Research has shown that experienced stigma around a health condition will deter people from even seeking treatment and that stigma surrounding NCD is so intense that even screening for NCD can have lasting negative emotional impacts (Link & Phelan, 2006; Chapman et al., 2006; Justiss, Boustani, Fox, Katona, Perkins, Healey, ... & Scott, 2008). Perhaps this is why the majority of older adults with NCD never receive a proper diagnosis or appropriate treatment (Chapman et al., 2006). Additionally, older adults experiencing signs of NCD have been found to avoid or underutilize services because of stigma and shame attached to NCD–type illnesses, both from the general population and from health care providers (Murray & Boyd, 2009). Furthermore, individuals that have been diagnosed with NCD and experience this stigma, reported negative effects on their quality of life in areas such as relationships, social support, and mental and physical health as they withdraw from their regularly enjoyed activities due to fear of exposure or inadequacy (Burgener, Buckwalter, Perkhounkova & Lui, 2015). Even when individuals do seek and receive treatments, the pervasive negative perceptions of health conditions and treatments lead to poor treatment adherence and 3 negative health outcomes (Shuz, Wurm, Warner, & Ziegelmann, 2012). To make matters worse, stigmatized illnesses receive less funding for treatment and research leading to slower progress and less successful treatment protocols– a fact that has not gone unnoticed by the Alzheimer’s Association who now identifies the fight against stigma as an area of focus (Link & Phelan, 2006; Burgener et al., 2015). Popular Culture as Public Health All media are important in the creation and dissemination of stigma and other representations but fictional depictions, in particular, can be powerful because they create emotional reactions which are tied to lasting interpretations and perceptions (Klin & Lemish, 2008; Shuz et al., 2012). While most of these influences are unintentional, media influences that are intentional (i.e.– like public health and awareness campaigns) can also be effective in changing the narrative of a disease or population (Klim & Lemish, 2008). Unintentional media influences are just as impactful as those that are intentional and there is now a movement towards using popular culture as a vehicle for public health– in part because of the wide reach of media like major motion pictures (Hudson, 2016; Hatzenbuehler et al., 2013). As the population of older adults grows, so will the importance of the representations of older adults and NCD in

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