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Throughout medical, academic, cultural, and social perspectives of the Alzheimer's, the disease is framed as a state of constant suffering, a loss of personhood, a living death, and an undignified existence (Behuniak, 2011; Dekker, 2018; Hughes et al., 2006; Schweda, 2022). This construction is furthered in popular literature, including memoirs, that describe the experience of Alzheimer’s as a total loss of the self or view Alzheimer's patients as empty shells without personhood (Behuniak, 2011). Throughout this project, these themes that view Alzheimer's as soulless shells undergoing suffering and a living death are referred to as 'Death Metaphors'. While not all death metaphors as related to Alzheimer’s are intentionally harmful, and may be reflective of family members trying coping strategies to understand the complexity of this disease and its impacts on their loved one; it is still important to note that the frequency of this language has real consequences to the care unit (Reed et al.; Schweda & Jongsma, 2022).
Figure 10. Alzheimer's memoir. Adapted from "death in slow motion," by Cooney, 2004.
Figure 11. Guide for Alzheimer's caregivers. Adapted from "The loss of self," by Cohen & Eisdorfer, 2001.
External link 2. Death of a loved one. Adapted from "Dementia: When a loved one dies twice," by Moles Farewell Tributes, 2020.
In her critique of these dominant themes, Behuniak demonstrates that these constructions have also led to the “zombification” of people living with Alzheimer’s (2011). Behuniak argues that alarming depictions of monstrous beings known as zombies have been integrated into our popular and medical discourse about people diagnosed with Alzheimer’s disease. Much of our disgust with this condition is rooted in our cultural fear of dehumanization, a fate we often consider worse than death (Behuniak, 2011). We act on this fear by separating our own humanity from the perceived non-humanness of people with Alzheimer’s disease in an extreme Othering (to the point that one is viewed as a breathing corpse) that positions people with Alzheimer’s as incapable of pursuing personhood. Zombification of Alzheimer’s patients is most often correlated with language that describes Alzheimer’s as a loss of self with a complete inability to recognize people. The zombie trope also arises from many physical descriptions of Alzheimer’s patients and their mobility or speech (Behuniak).
External link 3. Alzheimer's is a type of death. Adapted from "Robertson says Alzheimer's makes divorce ok," by Katie Moisse & Jessica Hopper, 2011.
To explain how medical and cultural perspectives continuously influence and reinforce one another’s ideas of Alzheimer’s, Behuniak draws from social construction theory which seeks to understand the process of how subjective ideas become culturally objective facts (Berger & Luckman, 1976). I must stress that this does not argue that Alzheimer’s disease is socially constructed rather than a biological process, but instead hopes to demonstrate how the language we use to describe Alzheimer’s becomes so culturally significant that subjective language based on opinions of personal experience develops into objective and institutionalized facts that are applied to everyone living with the disease. Unconditionally negative experiences in Alzheimer’s caregiving journeys become talked about as inescapable ‘facts’ about Alzheimer’s that are a secured fate for all patients and their caregivers (Sabat, 2003). Dekker (2018) theorizes that these constructions lead to the belief that a life with Alzheimer’s is not a life worth living. This negatively impacts people with Alzheimer’s, their quality of care, Alzheimer’s caregivers, family members of those with Alzheimer’s, and people who are predisposed to developing Alzheimer’s later in life.
Dekker theorizes that these constructions lead to the belief that a life with Alzheimer’s is not a life worth living. This negatively impacts people with Alzheimer’s, their quality of care, Alzheimer’s caregivers, family members of those with Alzheimer’s, and people who are predisposed to developing Alzheimer’s later in life (2018).
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