Neurodegeneration and the Intersubjectivities of Care

Abstract

Caring for a family member or friend with a serious health condition is a common feature of social life. Often, such care is framed as a burden, an unwelcome rupture in the fabric of everyday life. We draw on research conducted in Australia and the UK to examine care in the everyday lives of people living with and caring for neurodegenerative diseases and to trouble care as a burden. Participants in our studies mobilized practices of care to collaboratively produce a "good life". We argue that above all, care is a relational, enacted practice requiring examination in its local context.Caring for a family member or friend with a serious health condition is a common feature of social life, and particularly family life, globally (Seltzer and Heller 1997). Within highly industrialized settings, this is due, at least in part, to strong preferences by policy makers and funders, health providers, advocacy groups, and community members to move care away from institutionalized or residential (care facility) settings (Heaton 1999). Considerable efforts have been made to develop strategies to support people to remain in their homes for as long as possible, through subvention (grants) or pensions, caregiver support programs and advocacy, caregiver counselling services, and government-sponsored respite care. However, there is considerable variance between countries in how this is realized. In this article, we focus on research conducted in two settings-Australia and the UK-to examine the effects of these political shifts on the everyday lives of people living with and caring for age-related neurodegenerative diseases, and to consider how ideas of a good life are collaboratively produced and put into practice through acts of care. Our attention to two differentyet complementary-landscapes of care helps us bring in dialog the different ways people negotiate and assemble practices of care.Care is a relational, intersubjective activity that emerges in the spaces between people, and through practical activities that are performed by one person with or for another (Sakellariou 2016;Warren and Ayton 2018). It is idiosyncratic and takes diverse forms, from preparing medications-getting tablets out of a bottle and putting them beside a morning coffee cup, to doing activities (such as going to the pharmacy to collect medications, or doing grocery shopping or gardening), to accompanying someone to their weekly support group meeting, to toileting and bathing. Even within any one activity, caregivers and care recipients negotiate, adjust, devise and innovate, employ trial and error, and resist in order to develop strategies and practices, often with the purpose to avoid undesired outcomes and produce a good life, however defined, with a chronic condition. Through in-depth descriptions and analyses of what happens in specific instances, including those interactions when people negotiate care to effect some sort of change that can be evaluated as "good", we seek to problematize the notion of "burden" in the context of care and argue for a f...

Aging, Social Distancing, and COVID-19 Risk: Who is more Vulnerable and Why?

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Ageing, Social Distancing, and COVID-19 Risk: Who is more Vulnerable?

“…The need for a new equilibrium between the social needs of an ageing individual and their environment may gradually alter the existing social relationship (Shaw et al, 2007) and may result in greater physical distance than what existed in the middle age (Tobin and Neugarten, 1961). Accordingly, social ties in ageing adults are closely linked to a variety of challenges such as physical disabilities (Manini, 2011;Mendes de Leon et al, 1999;Molton and Yorkston, 2017), chronic-neurodegenerative diseases (Sohn, 2018;Warren and Sakellariou, 2020), health risks (Boen et al, 2012;Edwards et al, 2017;Lindsay Smith et al, 2017), negative psychological states (Boen et al, 2012;Gronning et al, 2018;Matt and Dean, 1993), as well as morbidity and mortality (Boyle et al, 2009;Eng et al, 2002;Steptoe et al, 2013).…”

The Lived Temporalities of Prognosis

“…The actions Gareth and Maggie took, alone and together, and the stories they enacted about their intersubjective life, were all, to some degree, tied to a future that was both uncertain and inevitable (Warren and Sakellariou 2020). For people who have received a diagnosis of an incurable and life-limiting disease, the future includes an expected death.…”