Social Dynamics and Personhood in Alzheimer’s disease Narratives: An Analysis of the Self in Alzheimer’s Autobiographies

Abstract

Alzheimer’s disease (AD), categorized as a disability by the World Health Organization (WHO), has been the most common form of dementia affecting sixty to seventy percent of patients. While medicine has offered multiple perspectives on AD, literary accounts by caregivers and family members initiated socio-cultural conversations around AD. However, the ableist perspectives did not portray the stories on the experiences of the patients but rather focused on caregiving. This was altered by the publishing of several Alzheimer’s autobiographies that document the disease, showing the reality of AD. Although each AD experience is unique, the common factor has been how memory loss and other accompanying symptoms make them lose their selves through the process. The self, in this context, relates to the identity and personhood carried by the patients. Personhood is defined by Tom Kitwood (1997) as the status bestowed upon a person in the society by the others and how they are treated. Studies on personhood in dementia and AD have pointed out the loss of personhood through memory loss and cognitive decline. However, through readings of autobiographies, one understands that the personhood is not all lost, and whichever part is lost is tried to be reclaimed by the patients in multiple ways. This study aims to read through parts of the autobiographies chosen – namely, On Pluto: Inside the Mind of Alzheimer’s by Greg O’Brien, Somebody I Used to Know by Wendy Mitchell, and Losing My Mind by Thomas DeBaggio – and analyze how this personhood is reclaimed by maintaining an active social life. This study looks to contribute to the growing realm of disability studies by choosing Alzheimer’s autobiographies as the primary focus and remove the stereotypical ableist lens on AD.