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Dementia and the privilege of growing old

Since at least the inaugural issue of this journal, it has been documented that people with dementia are willing and able to share their experiences and advocate for themselves. Yet, 15 years later and despite the pioneering efforts of many, the public imagination still fails to accurately reflect the views and values of those most intimately affected. The stigma accompanying a diagnosis of dementia and resultant social relegation remain. Casting a sociological lens on the topic might help us understand what stands in our way and offer some areas for closer scrutiny. The hegemony of American allopathic medicine is undeniable. The lion’s share of federal (and much private) funding is allocated to cause and cure research. This multi-billion dollar path dependency presents a universally negative depiction of dementia and the presumed caregiving role alike. Rather than interrogating this deficit-model, the American media has largely reinforced pejorative biomedical views, including rhetoric of ‘loss of self’ (Herskovits, 1995), ‘social death’ (Sweeting & Gilhooley, 1997) and an especially disturbing zombie trope of ‘the living dead’ (Behuniak, 2011). Such ‘tales of tragedy’ (Basting, 2009) remain a primary tool of modern media (Johnstone, 2013; Van Gorp & Vercruysse, 2012), despite the vast social science literature countering such claims. Yet, one consequence of the now extensive database on the lived experiences of dementia has arguably been a dichotomisation into ‘tragedy’ or ‘living well’ camps (McParland, Kelly, & Innes, 2017) aligned with modern medicine and mass media, on the one hand, and social and behavioral scientists, on the other. Psychologists Rowe and Kahn’s (1987, 1998) ‘successful aging’ model – and its seemingly endless subsidiaries, including ‘civic engagement,’ ‘aging well,’ and ‘active-,’ ‘positive-,’ or ‘healthy-’ aging – has been roundly critiqued by sociologists and social gerontologists for homogenising people and universalising aging experiences given widely reported disparities according to factors such as race/ethnicity, socioeconomic status, gender and sexual orientation. On closer scrutiny, the empowered counter-narrative of living with dementia may actually reinforce such false dualisms. While the risk of discrimination against those who cannot or do not chase neoliberal pursuits postretirement and the presumption that all people with dementia have aged ‘unsuccessfully’ (Beard, Fetterman, Wu, & Bryant, 2009) are deeply disconcerting, so too is the reduction of the lived experiences of the most heterogeneous societal subgroup into mutually exclusive