The role of performativity in informal dementia carers' capability to be mobile

Abstract

Informal carers are and will remain a vital part of dementia care. Given the nature of their caring tasks, which focus on enabling the care recipient to engage in meaningful activities, informal dementia carers are affected in their everyday mobility. Expectations manifested by society, loved ones and the carers themselves play a critical role in how carers perform their caring role and how they perceive their opportunity, or capability, to be mobile. This article uses Butler's concept of performativity to understand informal dementia carers' capability to be mobile. In the spring and summer of 2021, we combined remote graphic elicitation with telephone interviews to gather the views of 17 informal dementia carers (aged 50+) living in England. Three key themes emerged from our analysis of the data. Firstly, participants perceived that becoming a carer changed their capability to be mobile. Secondly, the caring role in relation to the capability to be mobile resulted in an emotional toll and perceived loss of autonomy. Thirdly, the performativity of the caring role created feelings of guilt, selfishness and resentment due to the impact caring had on participants' capability to be mobile. Our study enriches the literature on informal dementia carers' mobility, as we suggest that performativity is a key factor in how this population experiences their everyday mobility. The findings suggest that existing ageing-in-place policies should take a more holistic approach by better including those ageing adults who provide the most support: informal dementia carers.