Reframing challenging behaviour as cultural resistance: The refusal of bare life in long-term dementia care

Abstract

This paper considers the situation of people with dementia who are living in long-term care from two rarely-applied theoretical perspectives. The first, Agamben’s theory of biopolitical life versus bare life, demonstrates that the situation of people with dementia living in care homes or hospitals approximates to that of prisoners, internees and refugees, deprived of full citizenship or biopolitical life. In popular imagery people with dementia are frequently referred to, first in terms of numbers, as a ‘rising tide’, in a way that has historically been used to justify discrimination and social exclusion. In many, care environments it is, moreover, still the case that people with dementia are reduced to a condition of ‘bare life’ only: given little choice, having few rights, lacking freedom of movement, and subjected to almost constant surveillance. In other contexts, such treatment is known to cause or exacerbate many of the problems which – following a biomedical model – are constructed as ‘symptoms of dementia’, such as disorientation in time and space, sleep disturbance, hallucinations and repetitive movement. The second body of theory is Bakhtin’s work on cultural resistance. This demonstrates that many of the so-called ‘challenging behaviours’ manifested by people with dementia, can better be understood as coping, sense-making and self-determining strategies adopted in order to survive within prevailing organisational cultures. Based on a series of studies carried out in intermediate and long-term care since 2009, the paper draws on a range of narrative and film-based examples to demonstrate the ‘courage, humour, fortitude and cunning’ with which, as Walter Benjamin noted, the oppressed have always met the conditions of their oppression. In the process, ‘challenging behaviour’ is given political and ideological meaning, as protest, perpetrated by people who are struggling against extreme odds to be reinstated as full citizens.