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 film and other media in the fight against stigma around aging and NCD (McParland et al., 2012).
Aims and objectives.
Previous studies have looked at the representation of NCD in film. Gerritsen et al (2014) focused predominantly around the clinical picture of NCD, finding that some symptoms where seen frequently with others rarely making an appearance resulting in a misleading representation of NCD. Van Gorp and Vercruysse (2012) did not focus
4 clearly on one media type as they explored the framing of films in the creation of stigma and found that nearly all films main focus is on showing the loss of capabilities of the character with NCD. Neither study looked at the change in representation over time or directly at the ways the films worked to directly contribute to the creation and perpetuation of stigma. The objective of this study was to track the representation of
NCD over the past 40–50 years looking specifically for factors leading to the creation of stigma in major motion pictures and how those representations change over time.
The researchers looked critically at seven major motion pictures about or featuring
NCD made since the 1970s and assessed for representations of NCD and attitudes towards the disease and health outcomes. The hypothesis of this study was that representation of NCD would get better (i.e.– more nuanced, humanized, and relatable) over time but that tropes and stereotypes would still be pervasive across films made within the past ten years.
5 Method
This study is a qualitative discourse analysis using the archival data of major motion pictures that fit into inclusion criteria to code for common themes and direct quotes that fit into a priori operationalizations following the first three stages of the Link and Phelan (2006) stigma framework, as adapted by researchers to look from two different vantage points (See Table 2). This operationalization was then expanded on as described below (see Table 3).
Films.
Films were selected first by searching the Internet Movie Database (IMDB), iTunes, Google, and Netflix using key words ‘dementia,’ ‘elderly,’ ‘aging,’ and
‘Alzheimer's.’ These films were then included in the study if they were major motion pictures (documentaries and direct to TV films were excluded), if the character with NCD was a main or supporting character (minor character with NCD were excluded), and if the film was predominantly in English (films in other languages or set in countries were
English is not the predominant language were excluded).
The goal was to have two films from each decade since the 1970s. However, films in the 1970s, 1980s, and 1990s were difficult to come by. When possible a film from the early years of the next decade or late years of the previous decade was used in place of a film during the actual decade in question. Films were then screened for applicable diagnoses and films that were linked with dementia in the databases but did not actually have a character meeting criteria for diagnosis throughout most of the film were excluded. Films selected are displays in Table 1 below.
6 Table 1
Film Demographics
Film Title Year Character with NCD On Golden Pond 1981 Norman Thayer Jr. Iris 2001 Dame Iris Murdoch The Notebook 2004 Alison Hamilton Calhoun The Savages 2007 Lenny Savage Robot and Frank 2012 Frank Wells Still Alice 2014 Alice Howland
Measures.
Link and Phelan (2006) laid out a structure for the development and implementation of stigma in five stages. For the purposes of our study, only the first three stages– those dealing with the development of stigma were used. The last two stages, those dealing with the implementation of stigma were not included in this study. Each of the three stages used were observed from two vantage points– created by the researchers. The first of these is within film and is understood as how the other characters treat the character with NCD. The second is between film and audience and is understood as how the film presents the character with NCD (i.e.– is this character presented as a person or as a problem/plot device) (See Table 2).
The first of these stages is labelling and identifying that there is a difference or change (referred to hereafter as Labelling). In this study, Labelling was originally operationalized within film as when a character in the film other than the character with NCD mentions a change in functioning of the character with NCD and/or labels
7 that difference with a formal diagnosis. Between film and audience sees Labelling as a character within the film meeting the DSM 5 diagnostic criteria for either Major or
Minor NCD as a way to measure what this labelling looks like in a clinical context.
The second stage is linking of the identified/labelled difference with negative outcomes or characteristics (referred to hereafter as Linking). The within film operationalization for Linking was understood as when a character other than the one with NCD links the identified difference from stage one with negative outcomes or characteristics. The between film and audience operationalization for Linking was observed using the Katz Activities of Daily Living and Instrumental Activities of
Daily Living scales as a way to objectively measure the character’s functional abilities.
The third stage is seen as distancing or creating the “us versus them” groups between which stigma can occur (referred to hereafter as Distancing). Within film for Distancing, researchers were originally looking for instances of infantilizing/patronizing, and ignoring of the character with NCD from the other characters in the film. For the between film and audience criteria for Distancing, researchers observed and counted how many minutes of the film were presented from the point of view (POV) of the character with NCD as a way to observe whether the film intended for the audience to partner with the character with NCD or with caregivers.
8 Table 2
A Priori Operationalization for Development of Stigma Against NCD in Film
Link and Phelan (2006) Stigma Vantage Points Stages Between Film and Within Film Audience Labelling– How many times phrases such as– Accuracy of depiction/ Identifying and/or - Something has changed diagnosis– Labelling - They are not the same - Use DSM 5 areas Difference/Change - Not how they used to be of functional - Etc. impairment to Are used to describe change in the assess if Minor or character with NCD. Major NCD exists* Linking– How many times decline or actions Use Katz Activities of Linking Identified of character with NCD are linked Daily Living (ADLs)** Difference with with negative outcomes by (bathing, eating, toileting, Negative listening for words such as– etc.) and Instrumental Outcomes and/or - Can’t Activities of Daily Living Characteristics - Won’t (IALDs) (i.e.– money - Shouldn’t management, - Etc. transportation, etc) Scales. Distancing– How the characters distance How many minutes of the Distancing and/or themselves from the character with film is from the point of Creating “Us vs NCD through actions such as– view of the character with Them” Categories - Discussing character with NCD rather than from the NCD as though they are not point of view of present caregivers, family, or - The use of patronizing or health care professionals. infantilizing terms in regard to character with NCD - –Refusing to acknowledge/ accept requests of character with NCD *DSM 5 Diagnostic Criteria for NCD requires impairment in one of several domains of function. Major vs Minor diagnosis is contingent on severity of impairment not on the number of domains that show impairment ** Activities of Daily Living include activities to maintain personal hygiene and wellbeing and Instrumental Activities of Daily Living include activities instrumental to maintaining a safe lifestyle
9 Table 3
Final Operationalization for Development of Stigma Against NCD in Film
Link and Phelan (2006) Stigma Vantage Points Stages Between Film and Within Film Audience Labelling– –How many times phrases such as– Accuracy of Identifying and/or - Something has changed depiction/ Labelling - They are not the same diagnosis– Difference/Change - Not how they used to be - Use DSM 5 - Etc. areas of Are used to describe change in the functional character with NCD from the character impairment with NCD and from other characters. to assess if –How many times phrases such as– Minor or - There is nothing wrong with me Major NCD - They are fine exists - Etc Show willful denial of change from character with NCD and other characters. Linking– How many times decline or actions of Use Katz Activities Linking Identified character with NCD are linked with of Daily Living Difference with negative outcomes by listening for words (ADLs) (i.e.– Negative such as– bathing, eating, Outcomes and/or - Can’t, Won’t, Shouldn’t, etc. toileting, etc.) and Characteristics From the character with NCD and from Instrumental other characters Activities of Daily Living (IALDs) Scales Distancing– How the character with NCD is distanced How many minutes Distancing and/or from other characters– of the film is from Creating “Us vs - Discussing character with NCD as the point of view of Them” Categories though they are not present and/or the character with refusing to acknowledge/ accept NCD rather than their requests from the point of - The use of patronizing and/or view of caregivers, infantilizing terms in regard to family, or health character with NCD care professionals. - Neglecting and/or getting angry with character with NCD - Physically/emotionally distancing from character with NCD - Self–isolating behavior
10 As part of the procedure of the study, researchers expanded the coding structure for each category as more nuances were observed. Emergent themes were coded separately from the final coding structure based on the stigma theory framework as seen in Table 3. Only the within film vantage point operationalization was expanded, all between film and audience operationalizations remained the same as the a priori coding structure.
Labelling within film was expanded to look at incidents of identifying difference coming from the character with NCD, as well as willful denial of any change from both the character with NCD and from other characters. For Linking within film, the only added code was linking the identified difference in stage one to negative outcomes or characteristic coming from the character with NCD rather than other characters. Distancing within film saw the greatest increase in codes with the addition of physically distancing from character with NCD, emotionally distancing from character with NCD, self–isolation, and caregiver burnout.
Procedure.
Researchers for this study were two graduate students in the Master’s of
Social Work program at CSUN. The researchers were both women but of different ages, cultures, religions, and races. Both researchers had experience working with the older adult population– specifically with individuals experiencing various forms of NCD and with their caregivers.
Researchers first beta tested the assessment tool to check for accurateness and applicability. From here many categories were expanded (See Table 3).
Following this beta test, each researcher watched the films independently once and
11 then a second time together. Films were coded independently during the second viewing and then immediately discussed by the researchers to improve interrater reliability and further assess the assessment tool. Films were then watched a third time to track minutes point of view.
Researchers then met to create one final data sheet for each film that comprised of data collection sheets from both researchers and any field notes made during the first and third viewings and during discussions following independent coding. Final data sheets were then coded by both researchers to ensure interrater reliability. Codes were then tallied and tracked for frequency and rates of co– occurrence.
12 Results
Results are presented in order of the stages of stigma development and then by vantage point. For example– Labelling Within Film (Stage 1– Vantage Point within film) followed by Labelling Between Film and Audience (Stage 1– Vantage Point between film and audience) with this pattern continuing for Linking and Distancing
(stages 2 and 3). Descriptions of the code or operationalization is followed by an example from one film and then frequency. Frequencies can also be seen in Table 4.
Table 4
Frequency of Within Film and Emergent Themes
Code Frequency Films out of 6 Stage 1– Identifying/Labelling Difference - From Other Characters 32 6 - From Character with NCD 11 5 - Willful Denial of Change from others 7 6 - Willful denial of Change from self 3 3 Stage 2– Linking Difference with Negative Outcomes - From Others 28 4 - From Self 30 4 Stage 3– Distancing (Us vs Them) - Physically Distancing 10 4 - Emotionally Distancing 14 6 - Patronizing Infantilizing 28 6 - Ignoring 11 6 - Self–Isolation 0 0 - Caregiver Burnout 11 4 Emergent Themes - Partnering with Character with NCD 24 5 - Negative Representation of Nursing Facility 7 4 - History of Undesirable Personality 9 3 Characteristics - Teaching 9 2
13 Labelling Within Film
The final coding structure for Labelling Within Film criteria resulted in four distinct codes. The first was the a priori code of identifying/labelling difference from a character other than the one with NCD such as “He’s not the same, he forgets things (The Savages, Hope et al., 2007).” This code came up a total of 32 times and was present in 6 out of 6 films. The second code was the identification/labelling of difference from the character with NCD such as “It feels like my brain is dying (Still
Alice, Lutzus et al., 2014).” This came up a total of 11 times in 5 out of 6 films. The last two were willful denial from self (i.e.– “There is nothing wrong with my brain
(Robot and Frank, Bisbee et al., 2012)”) and others (i.e.– “I have Alzhiemers.” “That’s insane!” (Still Alice, Lutzus et al., 2014). These came up 3 and 7 times total and appeared in 3 out of 6 films and 6 out of 6 films, respectively.
Labelling Between Film and Audience
Criteria for Labelling Between Film and Audience was the DSM 5 criteria for diagnosis of Neurocognitive Disorder with two “codes”: Major NCD or Minor NCD.
Impairment in any one area of function qualifies for NCD diagnosis with the severity of the impairment as the basis for diagnosing either Major or Minor diagnosis
(American Psychological Association, 2013). Number of areas with impaired function does not relate to a Major or Minor diagnosis. As seen in Table 5 below,
Major NCD was seen in 4 out of 6 films with Minor NCD in the other two films. Also tracked in this stage and vantage point was whether or not treatment or diagnosis were mentioned at all throughout the film. Treatment or diagnosis was see in 5 out
6 films.
14 Table 5
Labelling and Linking Between Film and Audience
Treatment ADL/IADL or Major or Film Title Character with NCD Score Diagnosis Minor mentioned NCD On Golden Pond Norman Thayer Jr. 6/6 2/8 No Minor Iris Dame Iris Murdoch 0/6 0/8 Yes Major The Notebook Alison Hamilton 4/6 0/8 Yes Major Calhoun The Savages Lenny Savage 0/6 0/8 Yes Major Robot and Frank Frank Wells 6/6 3/8 Yes Minor Still Alice Alice Howland 5/6 1/8 Yes Major
Linking Within Film
Linking Within Film resulted in only two categories. The first was the a priori criteria of a character other than the character with NCD linking the identified or labelled difference with a negative outcomes or characteristics as seen in The
Savages (2007), “They aren’t going to take him in assisted living! Let’s be real– he has dementia!.” This came up 28 times across all films and was observed in 4 out of
6 films. The second categorization was when the character with NCD linked the identified/labelled difference with negative outcomes or characteristics, as seen in
Still Alice (Still Alice, Lutzus et al., 2014), “It feels like my brain is dying and everything I have worked for my entire fucking life is going!” This was seen in 4 of 6 films and came up 30 times across all films.
15 Linking Between Film and Audience
Criteria for Linking Between Film and Audience was the Katz Activities of
Daily Living and Instrumental Activities of Daily living scales. As seen in Table 5,
ADL/IADL scores correlated with the level of functioning that would be expected from the NCD diagnosis that the character received showing a more or less clinically accurate picture of NCD across films.
Distancing Within Film
Distancing Within Film became the most nuanced categories with six distinct codes. The first was physically distancing (i.e.– leaning away, never coming to visit, sitting across the room, getting up and walking away) which was seen in 4 out of 6 film and 10 times across films. The second was emotionally distancing as seen in
Robot and Frank (Robot and Frank, Bisbee et al., 2012) “Why do you think I left you up here with a robot?!” This was seen in 6 out of 6 film and 14 times overall. The third was instances of patronizing/infantilizing of the character with NCD (i.e.–“Say anything you like, as long as it sounds cheerful” (Iris, Rudin & Fox, 2001). This was seen in 6 out of 6 films and 28 times overall. The fourth was instances of ignoring like in Iris (Iris, Rudin & Fox, 2001) when she asks to keep the TV on and her husband just walks away. This came up 11 times across films and was seen in 6 out of 6 films. The fifth was instances of self–isolation which did not come across in the films we watched. The last was instances of caregiver burnout (i.e.– the increasingly filthy house in Iris (Iris, Rudin & Fox, 2001)) and was present 14 times and visible in
4 out of 6 film.
16 Distancing Between Film and Audience
Because Distancing is dependent on Labelling and Linking, the researchers felt that the outcomes for this stage would provide the best picture for the change in representations over time. In Figure 1 the minutes that each film is from the point of view for the character with NCD and the minutes that the film is shown from the point of view of any other characters are shown side by side. This figure shows the proportion of the film from the point of view from the character with NCD increasing over time with the exception of On Golden Pond which served as an anomaly.
Figure 1
Minutes Point of View Across Time
17 Emergent Themes
Over the course of research, four themes emerged that did not fit into the theoretical framework or directly contradicted the theme of one of the a priori categories. The first of these was a character without NCD partnering with the character with NCD rather than distancing themselves. An example of this is the beginning of the friendship between Robot and Frank in Robot and Frank (Robot and Frank, Bisbee et al., 2012) “I don’t need that kind of help but if you want we could be partners.” This was seen 24 times across films and was present in 5 out of 6 films.
The next was the negative representations of nursing facilities as shown in
The Savages (The Savages, Hope et al., 2007) “Yes it smells, they all smell, once you get inside these places they are all the same.” This was seen in 5 out of 6 films and 7 times across films. Another was the character with NCD having a clear history of being challenging or having a difficult personality such as the discussions in Robot and Frank (Robot and Frank, Bisbee et al., 2012) and The Savages (The Savages,
Hope et al., 2007) that talk about how Frank and Lenny were terrible and/or absent fathers. This came up in 3 out of 6 films and 9 times across films. The last was the act of teaching, as in On Golden Pond (On Golden Pond, Gilbert, 1981)when Norman teaches Billy how to fish. This theme was seen 9 times across films and was seen in
2 out of 6 films.
Commonly Co–occurring Codes
The most frequently co–occurring codes were instances of infantilizing/patronizing and instances of ignoring. Next were instances of linking
18 identified difference with negative characteristics and instances of ignoring. Third were the following three pairs– willful denial from self and linking difference with negative outcomes; physical and emotional distancing; and identifying/labeling difference from others and linking that difference with negative outcomes from others.
19 Discussion
The older adult population is underserved and underrepresented in research. This may have to do with the way that we understand aging and decline in our culture. This study looked in only one place- film- for stigma against NCD, and still found plenty of it. This study shows that films about NCD are still presenting stigmatized messages that can contribute to the creation and perpetuation of stigma against NCD and those who have it.
Stigma vs Partnering
Labelling Linking, and Distancing as they were originally operationalized (see
Table 2), were all clearly identified across films. What is interesting is that while these three themes (Labelling Linking, and Distancing both Within Film and Between Film and
Audience) were all among the most frequently occurring themes (and tended to co– occur), they were not more frequent than one of our emergent themes: partnering with the character with NCD. However, films that had these instances of partnering were not without instances of Labelling, Linking, and Distancing.
Films that showed both partnering messages and stigmatizing messages (5 out of
6), allowed the audience to judge from the different interaction styles (partnering or distancing) which approach is “better” or more effective in building relationships and managing symptoms of NCD. Unsurprisingly, films that had more partnering with the character with NCD also tended to have more of the film from that character’s point of view (i.e.– On Golden Pond, Gilbert, 1981; Robot and Frank, Bisbee et al., 2012; Still
Alice, Lutzus et al., 2014). This shift in point of view cues the audience to partner with
20 the character with NCD and therefore the audience sees instances of partnering as more reasonable and effective in creating a happy and safe environment for that character.
Films that are mostly from the point of view of the caregivers (Iris, Rudin & Fox,
2001; The Notebook, Johnson & Harris, 2004; The Savages, 2007) have the audience partner with the caregivers. Here, the instances of Labelling, Linking, and Distancing feel more like caregiver burnout and feel less hurtful because the audience can more easily see why they might be reasonable. The message from these films is that it is harder to care for a person with NCD than to have it yourself.
Linking with Negative Outcomes/Characteristics
As anticipated, this study found that characters other than the one with NCD were frequently quick to label/identify difference and link that difference with negative outcomes/characteristics. What was not expected was the rate at which the character with NCD would note a difference in themselves and also link that difference with negative outcomes. With other characters, the labelling/identifying was at about a 1:1 with linking the difference with negative outcomes. With the character with NCD, this ratio is closer to 3:1 in favor of pointing out negative characteristics.
What this means, is that while the character with NCD may not be clearly identifying a difference in themselves, they were just as likely as those characters without NCD to point out that cognitive decline leads to negative outcomes. For example, when Frank’s son gives Robot to him his response is “I am not this pathetic,” insinuating that there is nothing wrong with him but if there was, it would be pathetic (Robot and Frank, Bisbee et al., 2012). When the character with NCD
21 identified their own differences/changes and linked with negative outcomes it was always in the context of how their cognitive decline somehow made them “less” then their previous selves. For example, in On Golden Pond (On Golden Pond, Gilbert,
1981) when Norman accidentally causes a small fire he states that “I guess it isn’t safe to have me around here anymore.”
Across these films as a whole, characters with NCD were just as likely to note that cognitive decline was linked with negative outcomes. The difference in prevalence rates is seen between characters with NCD noting that change in themselves and others noting that change. The message is that everybody in the culture knows that NCD is “bad” or “shameful” and that those experiencing NCD may be less comfortable noticing that decline in themselves. This speaks to some internalized stigma that these characters carry with them prior to the onset of symptoms.
Emergent Theme– Nursing Homes
This study found that representations of nursing facilities across films was overwhelmingly negative. At times this was through direct comment (i.e.– “Yeah it smell, they all smell, once you get inside these places they are all the same. (The
Savages, Hope et al., 2007)” and by visible, facial reactions of characters to facilities
(i.e.– Alice (Still Alice, Lutzus et al., 2014) choosing to plan her own suicide rather than live in a facility). Objectively, from the point of view of the researchers (who have a history of working in/ visiting multiple different facilities) none of the facilities were inadequate or unsafe. In fact, they were often noted to be top notch and expensive. Even the “worst” facility from The Savages (The Savages, Hope et al.,
22 2007) was safe and clean with staff who were willing to be patient and listen to the needs of the residents. However, the take away message of the 5 films that even show or discuss nursing facilities is that all of these facilities are a fate worse than death.
Emergent Theme– History of Undesirable Personality Characteristics
Another interesting emergent theme was around the personality of the character with NCD before the onset of symptoms/decline. When discussing the history of the character with NCD, 5 out of 6 films noted that character had been cantankerous, difficult, absent, abusive, sarcastic, and/or dismissive earlier in life, before the onset of any NCD symptoms. Here we see a linking of NCD with preexisting undesirable personality traits and negative patterns of social interaction.
This pattern insinuates that “bad people get dementia” and that “nice people” have nothing to worry about. This in and of itself links NCD with negative outcomes/characteristics and implies that people with NCD are inherently bad and have always been bad—with or without the NCD. This allows the general population to discriminate against individuals with NCD with a quiet conscience and serves to perpetuate stigma against this population.
Conclusions
Representations of NCD do tend to get better over time, in terms of partnering with the character with NCD both from other characters and from the audience. The exception is On Golden Pond (On Golden Pond, Gilbert, 1981) which serves as our anomaly in that it was made well before films about NCD began to be
23 popular and in that the representation of NCD was humanized and relatable. Overall, the films display as much internalized stigma as stigma coming from other characters indicating that stigma against NCD is pervasive in our culture and that films perpetuate that stigma. Additionally, emergent themes around other issues related to aging (i.e.– nursing homes) show that ageism is common in these films as well. Most disturbing is the linking of preexisting negative characteristics with the later development of NCD– a representation that can be dangerous as it serves to further distance individuals with NCD from the “normal” members of the population and keep this group in a stigmatized role. This is not a way of creating stigma that the researchers had expected to find.
Our recommendation is that film makers are more purposeful and respectful in the way that they present NCD and caregivers in film and that they recognize the power that they have to influence understanding in the general population. While most films do not intentionally serve as public service announcements, the general public does take away a message when they watch a film. Also, social workers need to be aware of this stigma as they address their own biases and work with the older adult population who have likely been misinformed by the culture about what it means to have NCD. Social workers should also be aware of the internalized stigma around NCD when working with the older adult population as it can affect multiple aspects of function and coping.
Limitations
This study was limited by multiple factors. The first was the lack of interdisciplinary knowledge due to the fact that both researchers are within the
24 same field (social work). The study would have benefited from working with an expert in film study/analysis. Secondly, films from the 1970s, 1980s, and 1990s, that fit study criteria were not available making the across time dimension of the study difficult to fully address. Lastly, researchers limited this study only to films in
English and based in cultures where English is the dominant language in an effort to best use their own cultural lens to analyze the films. This lead to films that lacked in racial, cultural, and socioeconomic diversity.
Areas for Further Research
Many nuances in film representations and reception came up in this study that could not adequately be addressed here. Among these was the popular and critical reception of these films at the time of their release and what impact that may have had on public perceptions of NCD. Additionally, looking at this issue of stigma around NCD in films from other cultures and in difference languages would give insight into cross cultural understandings of NCD. Lastly, this study looked only at popular films but insights could still be learned from looking at independent and low budget films about NCD.
25 References
Anderson, L. A., Day, K. L., Beard, R. L., Reed, P. S., & Wu, B. (2009). The public's
perceptions about cognitive health and Alzheimer's disease among the US
population: a national review. The Gerontologist, 49(S1), S3–S11.
Bisbee, S. (Producer), Niederhoffer, G. (Producer), Acord, L. (Producer), Bisbee, J. K.
(Producer), & Schreier, J. (Director). (2012). Robot and Frank [Motion
picture]. USA: Dog Run Pictures, Park Pictures, TBB, & White Hat.
Burgener, S., Buckwalter, K., Perkhounkova, Y., & Liu, M. (2015). The effects of
perceived stigma on quality of life outcomes in persons with early–stage
dementia: longitudinal findings: part 2. Dementia, 14(5), 609–632.
Chapman, D. P., Williams, S. W., Strine, T. W., Anda, R. F., & Moore, M. J. (2006).
Dementia and its implications for public health. Preventing Chronic Disease,
3(2), 1–13.
Gerritsen, D. L., Kuin, Y., & Nijboer, J. (2014). Dementia in the movies: the clinical
picture. Aging & mental health, 18(3), 276–280.
Gilbert, B. (Producer), & Rydell, M. (Director). (1981). On Golden Pond [Motion
picture]. USA: ITC Entertainment.
Gubrium, J. F. (1986). Oldtimers and Alzheimer's: The descriptive organization of
senility. London: Jai Press.
Hatzenbuehler, M. L., Phelan, J. C., & Link, B. G. (2013). Stigma as a fundamental
cause of population health inequalities. American journal of public
health, 103(5), 813–821.
Hope, T. (Producer), Westheimer, E. (Producer), Carey, A. (Producer), & Jenkins, T.
26 (Director). (2007). The Savages [Motion picture]. USA: Fox Searchlight
Pictures, Lone Star Film Group, This Is That Productions, Ad Hominem
Enterprises, Cooper’s Town Productions, & Savage Productions.
Hudson, D. L. (2016). Popular Culture and Public Health: A Fresh Approach to
Transdisciplinary Public Health Education. Pedagogy in Health
Promotion, 2(4), 251–255.
Johnson, M. (Producer), Harris, L. (Producer), & Cassavetes, N. (Director). (2004).
The Notebook [Motion picture]. USA: New Line Cinema, & Gran Via.
Justiss, M. D., Boustani, M., Fox, C., Katona, C., Perkins, A. J., Healey, P. J., ... & Scott, E.
(2009). Patients' attitudes of dementia screening across the
Atlantic. International journal of geriatric psychiatry, 24(6), 632–637.
Khaw, K. (1994). Public health implications of a continuum model of dementia. In F.
Huppert, C. Brayne, & D. O’Connor (Eds.), Dementia and Normal Aging (pp. 41–
56). UK: University of Cambridge Press.
Klin, A., & Lemish, D. (2008). Mental disorders stigma in the media: Review of
studies on production, content, and influences. Journal of health
communication, 13(5), 434–449.
Link, B. G., & Phelan, J. C. (2006). Stigma and its public health implications. The
Lancet, 367(9509), 528. Mahendra, B. (1984). Dementia: A survey of the
syndrome of dementia. Boston: MTP Press Limited.
Lutzus, L. (Producer), Brown, J. (Producer), Koffler, P. (Producer), & Glatzer, R.
(Director), Westmoreland, W. (Director). (2014). Still Alice [Motion picture].
USA: Lutzus–Brown, Killer Films, BSM Studio, Backup Media, Big Indie
27 Pictures, &Shriver Films.
McParland, P., Devine, P., Innes, A., & Gayle, V. (2012). Dementia knowledge and
attitudes of the general public in Northern Ireland: an analysis of national
survey data. International Psychogeriatrics, 24(10), 1600–1613.
Murray, L., & Boyd, S. (2009). Protecting personhood and achieving quality of life for
older adults with dementia in the u.s. health care system. Journal of Aging and
Health, 21(2), 350–373.
Rudin, S. (Producer), Fox, R. (Producer), & Eyre, R. (Director). (2001). Iris [Motion
picture]. UK: British Broadcasting Corporation (BBC), Fox Iris Productions,
Intermedia Films, Mirage Enterprises, & Miramax.
Schüz, B., Wurm, S., Warner, L. M., & Ziegelmann, J. P. (2012). Self–efficacy and
multiple illness representations in older adults: a multilevel approach. Psychology
& health, 27(1), 13–29.
Van Gorp, B., & Vercruysse, T. (2012). Frames and counter–frames giving meaning to
dementia: A framing analysis of media content. Social Science & Medicine, 74(8),
1274–1281.
Zeilig, H. (2013). Dementia as a cultural metaphor. The Gerontologist, 54(2), 258–
267.
28 Appendix A
Graduate Addendum Required for Joint Projects
ADDENDUM – Popular Culture as Public Health: An Exploration of Film Representations of Neurocognitive Disorder
“Popular Culture as Public Health: An Exploration of Film Representations of Neurocognitive Disorder” is a joint graduate project between Claudia Agee Hughes and Danielle Dawidowicz. This document will explain the division of responsibilities between the two parties. Any additional information can be included in a separate document attached to this Addendum page.
Claudia Agee Hughes is responsible for all the following tasks/document sections:
• Set up iTunes • Buy movies • Search for movies • Literature Review- Researched and wrote sections (History of Dementia Representation, Popular Culture as Public Health) • Literature Review- reviewed sections (introduction, Development of Stigma, Aims and Objectives) • Methods- wrote Films, Design, and Procedures • Methods- reviewed Measures and charts • Results- wrote sections Emergent Themes and Across Time • Results- reviewed section Stages 1-3, graph and figure • Discussion- wrote sections (Linking Difference with Negative Outcomes/Characteristics, and Representation of Nursing Homes) • Discussion- reviewed sections (Stigma and Partnering and History of Undesirable Characteristics)
Danielle Dawidowicz is responsible for all the following tasks/document sections:
• Set up google drive • Literature Review- Researched and wrote sections (Introduction, Development of Stigma, Aims and Objectives) • Literature Review- reviewed sections (History of Dementia Representation, Popular Culture as Public Health) • Methods- wrote Measures, made charts • Methods- reviewed Films, Design, and Procedures • Results- wrote section Stages 1-3 and made graph and figure • Results- reviewed sections Emergent Themes and Across Time
29 • Discussion- wrote sections (Stigma and Partnering, and History of Undesirable Characteristics) • Discussion- reviewed sections (Linking Difference with Negative Outcomes/Characteristics, and Representation of Nursing Homes) • Discussion- reviewed sections (Stigma and Partnering and History of Undesirable Characteristics)
Both parties shared responsibilities for the following tasks/document sections:
• Writing Abstract (different for each partner) • Formatting Paper and Maintaining APA standards • Creating References Page • Creating Code Book • Collecting Data • Coding Data • Recommendations and Area of Further Research
______Claudia Agee Hughes Date Danielle Dawidowicz Date
____000122074______107392933_____ Student ID Student ID
______Dr. Alejandra Acuna Date Dr. Eli Bartle Date
______Dr. Judith A. DeBonis Date Dr. Eli Bartle Date
______Dr. Wendy Ashley Date
30