Managing Shame: A Grounded Theory of How Stigma Manifests in Families Living With Dementia

Introduction

Nearly 47 million people worldwide are living with Alzheimer’s disease or related dementia, and as the population ages the number is expected to reach 131.5 million by 2050 (Prince, Comas-Herrera, Knapp, Guerchet, & Karagiannidou, 2016). In the United States, an estimated 5.7 million Americans are living with the disease, and projections suggest that by 2050 the number will grow to 13.8 million (Alzheimer’s Association, 2018). Dementia affects 1 in 10 people aged 65 years and older, is the fifth leading cause of death among older adults, and is the leading cause of disability and poor health (Alzheimer’s Association, 2018).

Alzheimer’s disease is an irreversible, progressive brain disorder that slowly destroys memory, language, problem-solving, and cognition. This form of dementia often begins with mild memory impairment, but over time individuals with the disease lose the ability to complete simple tasks and eventually lose the ability to care for themselves; ultimately, the disease is fatal. Those living with moderate to advanced stages of the disease often rely on informal, unpaid caregivers who, in the United States, provide the vast majority of care. In 2017, approximately 16 million family members and friends provided more than 18 billion hours of care to individuals with dementia, valued at more than $232 billion (Alzheimer’s Association, 2018).

Despite efforts to increase awareness and education about the disease through programs such as the National Alzheimer’s Project Act passed by the U.S. Congress in 2011 or the Healthy Brain Initiative put forth by the Centers for Disease Control and Prevention, three quarters of those with dementia and two thirds of caregivers had negative associations about people with dementia such as being discounted, lack of understanding, fear, or avoidance (Batsch & Mittelman, 2012). Recent research on public attitudes toward Alzheimer’s disease dementia in the United States found that more than half of 317 randomly selected adults expected people with dementia to be discriminated against by employers, excluded from medical decision making, and limited in health insurance (Stites, Rubright, & Karlawish, 2018).

Corrigan and Miller (2004) examined stigma at the psychological level and suggested that family members of people with mental illness are blamed for the condition, shamed and avoided for fear of contamination. Thus, not only is the individual with mental illness stigmatized but also those who are in close association with the stigmatized individual may lose social status owing to “courtesy membership.” Corrigan and Miller (2004) refer to this as family stigma, suggesting that family members of people with mental illness are “tainted” by association with relatives with the disorder.

The stigma associated with dementia can have negative repercussions, both for those with the condition and for family members who care for them. In studies of stigma in persons with dementia and their caregivers, researchers found a significant positive relationship between perceived stigma and anxiety levels for both those with dementia and their caregivers (Burgener & Buckwalter, 2008). In addition, poor cognitive function was significantly, positively correlated with perceived stigma related to social rejection, social isolation, and total stigma score as measured by the Stigma Impact Scale (Burgener, Buckwalter, Perkhounkova, Liu, et al., 2015). Stigma is thought to add to the burden of the condition by preventing people from obtaining an early diagnosis that can, in turn, provide early intervention, coordinated care planning, management of symptoms, safety, cost savings, and postponement of institutionalization (Dubois, Padovani, Scheltens, Rossi, & Dell’Agnello, 2016). In addition, stigma may prevent people from talking to their health care providers, benefitting from available treatments, developing support systems, ensuring plans for future care, and participating in research (Batsch & Mittelman, 2012; Boots, Wolfs, Verhey, Kempen, & de Vugt, 2015; Brooker, La Fontaine, Evans, Bray, & Saad, 2014; Devoy & Simpson, 2017; Fowler et al., 2015). INTERDEM, a pan-European network of research-practitioners that promote research on early recognition and psychosocial intervention in dementia, published a European consensus paper on the operationalization of social health and dementia. They concluded, for people with dementia, resilience and the ability to reject stigmatization was a critical factor for persons living with dementia to function in society according to their “competencies and talents” (Droes et al., 2017, p. 7).

Dementia-related stigma can also have negative consequences for family members as it is positively associated with caregiver burden (Kahn, Wishart, Randolph, & Santulli, 2016; Werner & Hess, 2016). Stigma associated with dementia prevents many caregivers from availing themselves of supportive services (Garand, Lingler, Conner, & Dew, 2009; Graham et al., 2003; Morgan, Semchuk, Stewart, & D’arcy, 2002). In addition, it is associated with isolation and poor quality of life in family caregivers (Adams & McClendon, 2006; Milne, 2010). Stigma is also associated with caregivers’ high expressed emotion and poor quality of life (Weisman de Mamani, Weintraub, Maura, Martinez de Andino, & Brown, 2018).

It is clear that individuals and families living with dementia face stigma and discrimination and that stigma influences their health, health care access, and utilization. While a growing body of research documents the existence and negative outcomes of stigma, less is known about how stigma produces ill effects. Therefore, the purpose of this study was to use qualitative methods to explore how stigma manifests within families from the perspective of family caregivers of people with dementia.

Method

We used grounded theory (Corbin & Strauss, 1990; Schreiber, 2001) methods for this study. Grounded theory is a qualitative research method that focuses on understanding the complexities of experiencing and responding to a phenomenon from the perspective of those who experience it. It is rooted in symbolic interactionism and the constructivist paradigm which proposes that realities are pluralistic and that people create and modify meanings through their own actions and interactions with others (Milliken & Schreiber, 2001). A better understanding of how family caregivers experience and respond to stigma is important to develop strategies to overcome stigma and empower family caregivers.

Results

Analysis of the interview data pointed to constructs of shame as the central theme experienced by family caregivers of people with dementia. Attempting to manage shame, produced three categories of responses (1) silencing, (2) concealing, and (3) shunning (Figure 1).

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Figure 1.

Managing shame: Silencing, concealing, shunning.

Discussion

The purpose of this grounded theory study was to explore how stigma was manifested in families living with dementia. Analysis of the interview data identified shame as the central theme that produced three categories of responses: silencing, concealing, and shunning.

Stigma is a complex construct that had been defined in several ways. According to Goffman, stigma is an “attribute that is deeply discrediting . . .” and when an individual possess such an attribute, he is seen as different from others and, therefore, becomes “less desirable” (Goffman, 1963, p. 3). Link and Phelan (2001) suggested that stigma exists when four components converge. First, people distinguish and label human differences. Second, the dominant culture links labeled persons to “undesirable characteristics” (negative stereotypes). Third, labeled persons are placed into distinct categories to separate “us” from “them.” Finally, the labeled persons experience status loss and discrimination that leads to unequal outcomes (Link & Phelan, 2001, p. 367).

Stigma as described by the participants in this study, vividly illustrate the experience of shame associated with dementia. Just as Goffman (1963) and Corrigan and Miller (2004) suggested, family caregivers described dementia as being deeply discrediting and shameful, and those with the condition were seen as having lost control of their minds, becoming shells of themselves, and being diminished people. Link and Phelan (2001) suggested that stigma arises when people’s differences are distinguished and labeled. The participants in this study were also fearful of the stigma associated with the diagnostic label of dementia. This was especially true for the term Alzheimer’s disease. They are not alone. Several studies document societal fear of discrimination and negative labeling associated with dementia (Blay & Toledo Pisa Peluso, 2010; Phillipson, Magee, Jones, Reis, & Skladzien, 2015; Tang, Price, Stephan, Robinson, & Exley, 2017). A study of more than 4,000 adults (18 years and older) found that 60% were concerned that a diagnosis of dementia would change the way others would think or feel about them (Tang et al., 2017). This may help explain why many people are reluctant to seek diagnosis and treatment when they suspect memory difficulties. Efforts to overcome these negative stereotypes and labels are important because a mathematical model estimates that early and accurate diagnosis could save up to $7.9 trillion in medical and care costs (Alzheimer’s Association, 2018).

Family caregivers described silencing as a strategy that they and others used as a means of avoiding the shame associated with dementia. The power of saying the discrediting label aloud is reminiscent of other formerly stigmatized conditions such as cancer and AIDS, which historically could be spoken of in whispers only. Susan Sontag (2001) in Illness as Metaphor and AIDS and Its Metaphor disavowed the commonly held fear that pronouncing the names of diseases such as cancer or TB would hasten death. She suggested that when an illness is mysterious and has no cure, it is viewed as an “evil, invincible predator,” and those affected are consider cursed and punished (Sontag, 2001, p. 7). It is interesting that a participant in this study longed for dementia to be treated like cancer, a diagnosis that today solicits a full array of empathic discussion of treatment options.

The participants’ experience of physicians’ remaining silent in the face of dementia is also supported by the literature and has strong implications for practice. Nearly 15 years ago, a study using focus groups of general practitioners conducted across the European Union found that stigma, ageism, and a sense that there is little to offer those with dementia led to their reluctance to recognize dementia in its early stage (Iliffe et al., 2005; Vernooij-Dassen et al., 2005). More recently, uncertainty of the diagnosis is also cited as reason clinicians do not label the diagnosis of dementia and this may add to perceptions of stigma (Milby, Murphy, & Winthrop, 2015). In addition, a systematic review found that stigma was a barrier to both diagnosis and treatment (Koch & Iliffe, 2010). Addressing stigma among health care professions is important because while currently available pharmacologic treatments do not stop the disease, studies consistently show that active, non-pharmacological treatments can improve quality of life for individuals and family members (Anderson, Lopez, Rose, & Specht, 2017). Dementia-related stigma and implicit bias among healthcare providers is an important area for further research.

Family caregivers in this study reported that those with dementia attempted to conceal or hide their diagnosis or condition from others to avoid shame and/or abandonment associated with dementia. This insight is supported by a phenomenological study of those with early-stage dementia who reported distancing themselves from others as a strategy to avoiding shaming experiences (Aldridge, Fisher, & Laidlaw, 2017). A recent meta-synthesis of studies exploring the experience of living with dementia, however, found that disengagement from activities resulted from loss of skills, decreased confidence, difficulty expressing oneself, and lack of support to engage in social relationships (Górska, Forsyth, & Maciver, 2017). Additional research is needed to understand whether those with dementia purposefully disengage from social activities as a method of avoiding shame or if disengagement is a symptom of cognitive challenges, or both.

Finally, family caregivers of people with dementia felt that they themselves were shunned. Shunning is an act of social rejection and occurs when a person or group avoids association with another individual or group. In the religious context, shunning can be a purposeful decision by a community to cease interaction as a mean of controlling the conduct of the members. People may also shun, however, to avoid feeling embarrassed or shamed themselves. Regardless of the reason however, being shunned and feeling socially isolated can have serious negative consequences. Research suggests that social isolation and feeling lonely may contribute to anxiety, poor overall executive and cognitive functioning, faster cognitive decline, and increased depressive symptoms (Burgener, Buckwalter, Perkhounkova, & Liu, 2015; Cacioppo & Hawkley, 2009). Not only does social isolation have negative consequences for the individual who is shunned, but research suggests that loneliness may be contagious. A longitudinal analysis of a cohort of Framingham Heart Study participants found that nonlonely people who were around lonely people tended to grow lonelier over time (Cacioppo, Fowler, & Christakis, 2009). Moreover, being socially disconnected significantly increases the risk of premature mortality (Holt-Lunstad, 2017)

This study has limitations. First, participants were recruited from a memory clinic and, therefore, may not reflect the views of those who, owing to stigma, do not present themselves for diagnosis and treatment. Similarly, those who volunteer to take part in research are less likely to be those most affected by stigma. Second, we did not interview people with dementia. Although our research suggests that stigma may be a shared experience between both people with dementia and their caregivers, the perspectives of those with the disease are absent and require additional investigation. Third, given the heterogeneity in stage of dementia and length of caregiving we cannot draw conclusions about how these factors may influence the experience of stigma. Finally, the small sample size limited our ability to draw any distinctions between the experiences of Hispanic versus non-Hispanic caregivers with regard to stigma, but this is an important area for future research. Despite the limitations of the study, it provides novel insights into the mechanisms by which stigma may exert its negative effects. It illustrates that rather than a label assigned by society, families living with dementia and those around them may co-create stigma by ascribing shame to the disease and responding by silencing, concealing, and shunning.

Conclusions

Family caregivers of people living with dementia experience stigma and it has implications for how they engage with their family, friends, and how they access supportive services in their communities. Shame is a central theme in the experience of stigma in these family caregivers. Silencing, concealing, and shunning are responses to the shame associated with dementia. Efforts to diminish stigma should be aimed at dispelling the misperception that dementia is in some way a shameful disease.