Elisa Casini,, France
Title: Sleep, an issue for couples facing neurodegenerative diseases
This doctoral dissertation in sociology examines the sleep practices of ageing couples confronted with neuro-degenerative conditions. It aims to understand the time- and space- related aspects of these sleep practices, so central to couples' lives, throughout the different stages of illness, and places particular emphasis on gender-based relations. Thirty couples were interviewed in their homes, 12 of whom were affected by Lewy Body Dementia and 18 by Alzheimer's Disease. Empirical methods such as sleep journals, audio journals, and photographic documentation were incorporated into the study's methodology. The study is divided into three branches. The first branch examines the role of "night-time guardian" assumed by the caregiving partner. The author was able to observe that a shift takes place from the status of sleeping partner to that of night-time caregiver. The role of the "night-time guardian" is characterized by domestic labor that takes the form of caregiving provided at night, a phenomenon the author calls "nocturnal domestic caregiving work". The findings of the study show that this domestic night-time work can bring about a state of exhaustion in caregiving partners that can drive them to institutionalize the partner suffering from a medical condition. In addition to this domestic work, caregiving partners are prone to a state of night- time worry that results in a specific variety of sleep that can be described as "alert sleep". This domestic work also goes largely unseen for two reasons: it is made up of activities that take place at night, and it often falls to women. The study's second branch offers an analysis of the impact of illness and cognitive disorders on the way areas of the home associated with sleep are organized, bringing to light the give-and-take that occurs where the marital bedroom is concerned. The author examined the reasons some sleep partners continue to insist on sleeping together. Also addressed are the bodily aspects of shared beds, a special context in which the bonds shared between bodies can be expressed in a unique way. The dissertation further explores the experience of placing distance between sleep partners: the meanings and practices surrounding the decision to sleep as a couple but in separate rooms. The final branch of the study examines a range of strategies used to manage sleep, such as taking sleeping medication, turning to in-home or institutional night-time caretaking, and day-time sleep. The author surveyed the reasons that caregiving partners accepted or refused to utilize these strategies, and the study's findings show that the vulnerability represented by night and sleep can render it difficult to decide to use strategies to manage sleep.