Social Practices and Material Engagement in Institutional Long-term Care: The Making and Unmaking of Personhood in People with Alzheimer’s disease and Related Dementias

Key Words: Alzheimer’s disease, Material Engagement, Practice Theory, Long-term Care Individuals with Alzheimer’s disease and related dementias (ADRD) are faced with multiple threats to their social lives and to their sense of self and personhood. Threats include the assumption that a sense of self is entirely dependent upon cognition and memory, elements that become impaired in ADRD (Kontos 2006) and images of ADRD as the death before death (Behuniak 2011). The move to long-term care with its stripping away of possessions that supply one with personal identity also poses a threat. I propose that what matters most in classifying people is what they do, what actions they engage in, and what identities they perform all of which are mediated and co-constituted through engagement with objects. The goal of this study was to examine the relationship between the individual with ADRD and his/her engagement with the material world and how this engagement may substantiate the self and personhood of people with ADRD. This anthropological study employed Practice Theory (Bourdieu, 1990) and Material Engagement Theory (Malafouris, 2008). The two perspectives are interconnected, as engagement with objects is fundamental to the development of the habitus and the objects made available are in large part influenced by the tone of sociocultural representations. An ethnographic approach was used in which data was collected over a 12 month period using participant observation, interviews, and direct systematic observation. I examine how the multi-modal experience of daily activities brings together objects, language, ideas and bodies to accomplish shared activities that make, unmake and remake people with ADRD. Through a consideration of the material environment I address the larger socio-cultural factors and the subjective factors that impact the performance of self and the making and unmaking of personhood among people with ADRD. By attending to the broader social practices of institutional long-term care and the collective experiences of residents in a long-term care facility, this research contributes to the effort to reframe how we understand the capabilities and potential of people with dementia that is advocated by Bartlett and O’Connor (2010). They stress “the need to move from the individual experience to include an examination of how lived experiences of dementia are entwined, shaped and constrained by broader societal structures and discourses” (Bartlett & O’Connor, 2010, p.5)