Rebecca Mead, a staff writer at the New Yorker, has a persuasive piece about dementia care in the May 20th issue. The article centers on the practices of The Beatitude Campus, a retirement community in Phoenix, and it’s full of inventive ways to deal with patients suffering from Alzheimer’s and other dementias.
What struck me, just as with Jonathan Rauch’s article in the May Atlantic, is the slowly-evolving consensus that heroic medicine has little place in the care of advanced-stage dementia patients. We are trying to give some grace to scenarios that are inherently difficult and often painful, both physically and emotionally. As Mead writes, “Without any immediate prospect of a cure, advocacy groups have begun promoting ways to offer people with dementia a comfortable decline instead of imposing on them a medical model of care, which seeks to defer death through escalating interventions.”
My own experience with my father showed me how difficult it was to go against the medical juggernaut. We never want to be seen as limiting care, as doing any less for a patient than we can do. Our natural urge is to prolong the patient’s life. I wanted this for my dad—but not so much that I wanted him to suffer. By the time, near the end, when he broke down and pleaded with me, “Help me. Help me get out of here, can’t you please help me get out of here?”, repeating himself for 20 or 30 agitated minutes at a time, I knew there was no longer any role for “escalating interventions.”
I love this country for its adaptability, for how we talk about everything, for how good news can spread. When my grandmother died of Alzheimer’s in the late sixties, we were in the dark ages of dementia care. I think now we’re seeing some light.