- Still Gloria:Personal Identity and Dementia
Alzheimer’s, dementia, identity, memory, narrative, relational identity
Beverly Beckham (2008) writes in the Boston Globe in praise of Lisa Genova’s (2007) Still Alice: “You have to get this book. … I couldn’t put it down. …” After I read Still Alice, a book of fiction about an accomplished Harvard professor with early-onset Alzheimer’s disease, I too wanted to tell everyone to get this book, but not because “I couldn’t put it down.” The first time I read it, I put it down several times to cry. It was too painful to read in one stretch. Years back, my mother, Gloria Baylis,1 had been diagnosed with vascular dementia, and recently there had been findings suggestive of an atypical presentation of Alzheimer’s disease. The story of Alice Howland, the Alice of Still Alice, was both too familiar (because of what I already knew), and too revealing (because of what I did not yet know).
Beckham refers to Alzheimer’s as “the monster breaking down the door” and says “there’s no place to run because there is no place to hide.” One can try “to tame it and outrun and outwit it. … But the monster at the door does not go away.” As these comments illustrate, Alzheimer’s is, for many, a special kind of horror story from which there is no escape. Notably, the monster that is Alzheimer’s is not only perceived as a threat to the person with the disease and a threat to all those who care about that person, but it is also perceived as [End Page 210] a threat to all of us who might one day be living with dementia. Indeed, dementia is among the most feared diseases of our time.
The reality and the threat of dementia challenge us all in many ways, both at the level of practice and at the level of theory. In the latter case, dementia challenges our understandings of relational autonomy and relational identity. It requires us to evaluate carefully what it means to affirm that self-determination is inherently social, as is personal identity.
In this essay, I use my lived experience as the daughter of a woman with dementia to begin to think about how relational theory needs to work harder in considering what it means to be in relation with someone who is losing her mind and thereby losing some of the key capacities on which relationships are formed and upon which they rely.2 In what follows, I suggest that persons with dementia are persons who need relational support to be seen as persons, and perhaps even to experience themselves as persons.
As persons with dementia change, so too do their relationships. Whether these relationships rupture, dissolve, or evolve depends on whether (and how) these relationships are valued by persons without dementia as they come to understand the ways in which the disease will change both them and their relationships. In my limited experience, many (if not most) friendships and some family relations will not withstand the crashing tides of dementia. As medical anthropologist Janelle Taylor (2008) writes of friendships in her work on recognition and dementia: “More like pleasure crafts than life rafts, they [friendships] are not built to brave the really rough waters—and these are rough, corrosive, bitter waters indeed” (319). As social and personal ties rupture, dissolve, or evolve, one’s relational autonomy and relational identity shifts.
2. Reading Still Alice
I first read Still Alice in 2011 while living in New Zealand. Before I left my home in Halifax for Dunedin, I flew to Montreal to say goodbye to my mother, who was by then a resident of a nursing home with a special program for persons with Alzheimer’s and memory difficulties. I took a taxi from the airport directly to the nursing home. I found my mother wandering the hall, a common behavior among persons with dementia. She looked somewhat confused when she saw me, and stared at my travel suitcase. She asked me if I was leaving. I told her I was leaving on a long trip, but...