It changes your mind: doing gender by proxy and gender fluidity in the context of dementia

People with dementia progressively lose the ability to act and make decisions independently, requiring a prolonged period of supported decision making and possibly complete decision making by proxy in the final stages of the disease. Sometimes, the decision-making process is complicated by the fact that people with dementia have different personalities, preferences, desires, and values compared to earlier in their lives, creating a conflict between earlier values and preferences and currently expressed ones. Most examinations of this process examine caregivers' proxy decisions around medical care, finances, and legal matters. However, caregivers engage in supported and proxy decision making processes in multiple areas of life, such as activities, dress, grooming, overall lifestyle; these areas of life are profoundly gendered for most people. This paper will extend the discussion of supported and proxy decision using West and Zimmerman's (1987) concept of doing gender and Judith Butler's (1990) gender performativity theory to theoretically examine how caregivers do gender by proxy for people with dementia and the possible impacts of having changing values, preferences, and desires around gender for people with dementia. First, I will review sociological theories of doing gender and gender performativity, followed by a review of current bioethical concepts of proxy decision making and the conflict between changing values and preferences prior to and during dementia. Then I will combine these theoretical traditions to conceptually define doing gender by proxy and gender-related supported decision making both in community and institutional settings.