When she was confused and incoherent and aggressive, it was consoling to think that this was not really Elaine. This was a disease having its way with her. She was still there, in there somewhere, but this was not her. This was not real. I still think that was true, and tonic for our distress, but at the same time she demanded and deserved care because she was still herself. Though ravaged and fouled, her personhood was undiminished.
This is the thinking behind a reconsideration of dementia care in the US, based on the work of British social psychologist Thomas Kitwood, a pioneer of what it seems strange anyone should have had to pioneer: person-centric care. It's a view that critiques our prizing of cognition over other aspects of human being, like sensuality, intimacy, pleasure, which survive the dereliction of the mind. A view that returns us to the mystery of human life, the more mysterious at the moment of its unravelling.
A recent New Yorker piece describes what Kitwood saw as the problem. “In advanced Western societies, where a sense of community is often weak, the evident frailty of people with dementia generates fear; this unease is socially managed by turning the demented into nonpersons, who are warehoused in nursing homes and pathologized with terms like 'resisting care.' The problem, Kitwood concluded, 'is not that of changing people with dementia, or of “managing” their behavior; it is that of moving beyond our own anxieties and defences, so that true meeting can occur, and life-giving relationships can grow.' Only in this way could the personhood of people with dementia be conserved, even as their intellection declined." This is about seeing people for what they keep, not what they lose. Though much is taken, much abides.
None of this does away with the indignities of showering and feeding and changing nappies, but perhaps it transforms them from mechanised processes into acts of grace. Acceptance instead of anxiety. Love instead of fear.