Situational expectations & surveillance in families affected by dementia: organising uncertainties of aging & cognition

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.