Abstract
ABSTRACT Recent political processes have rendered people with dementia an increasingly surveilled population. Surveillance is a contentious issue within dementia research, spanning technological monitoring, biomarker research and epidemiological data gathering. This paper explores surveillance in the relationships of people affected by dementia, how older relatives both with and without diagnoses are surveilled in everyday interactions, and the importance of expectations in guiding surveillance. This paper presents data from 41 in-depth interviews with people affected by dementia living in the community in the United Kingdom. Agedness was a key contributor to expectations that a person may have dementia, based on previous experiences, media accounts and wider awareness. Expectations provoked surveillance in interactions, with participants looking for signs of dementia when interacting with older relatives. Older people also enacted self-surveillance, monitoring their own behaviour. Various actions could be attributed to dementia because interpretation is malleable, partly vindicating expectations while leaving some uncertainties. Expectant surveillance transformed people’s experiences because they organised their own actions, and interpreted those of others, in line with pre-existing meanings. The ability to interpret behaviours to fit expectations can bring coherence to uncertainties of ageing, cognition and dementia, but risks ascribing dementia to many older people who straddle those uncertainties.
Highlights
Since its politicisation in the 1970s, dementia has garnered substantial notoriety (Beard, 2016; Fletcher, 2020a; Kueck, 2020)
This paper explores surveillance in the relationships of people affected by dementia, how older relatives both with and without diagnoses are surveilled in everyday interactions, and the importance of expectations in guiding surveillance
This paper has extended contemporary concerns regarding surveillance and dementia to incorporate everyday interpersonal interactions of informal relationships
Summary
Since its politicisation in the 1970s, dementia has garnered substantial notoriety (Beard, 2016; Fletcher, 2020a; Kueck, 2020). FLETCHER disregarded by clinicians and publics alike (Beard, 2016; Fox, 1989; Lock, 2013), people with dementia are hyper-visible They no longer represent a bemusing consequence of ageing, as clinicians and publics once held, but instead manifest a modern epidemic filling newspaper front-pages (Brookes, Harvey, Chadborn, & Dening, 2018; Hillman & Latimer, 2017; Peel, 2014) and influencing election results (Oliver, 2018). In response to proliferating alarmism, a humanist scholarship has emerged, refuting derogatory imaginings of dementia, and promoting personhood, citizenship and rights (Bartlett & O’Conner, 2010). Such significant alteration in a population’s status entails practical implications for its (potential) members, regarding how they are approached by others. The focus is participant interpretations rather than pre-existing models
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