Dementia Patients Aren’t in Their ‘Perfect Mind.’ Then Again, Who Is?

In her 70s, Iris Murdoch began documenting the fraying of her memory in her journals. “Find difficulty in thinking and writing,” she noted. “Be brave.” She would write one more novel, “Jackson’s Dilemma,” before receiving a diagnosis of Alzheimer’s in 1997. Drafts of a letter from that year were later discovered among her papers. “My dear,” she wrote, “I am now going away for some time. I hope you will be well.” A following version was just scrawls.

What does it mean “to go away”? What parts of us are snatched away by Alzheimer’s and what parts remain? In a searching, poetic inquiry into dementia, Lynn Casteel Harper delves into a disease that afflicts some six million Americans and yet seems shrouded in secrecy, its sufferers hidden away in institutions, its symptoms cloaked in a peculiar, telling language of terror and contempt. “A thief, kidnapper, slow-motion murderer, Alzheimer’s purportedly robs, steals and erases one’s memory, mind, personality — even one’s very self,” Harper writes in “On Vanishing.” “That persons with dementia are so readily envisioned as vanished or vanishing, succumbing to an especially terrifying, slow-moving, unstoppable vortex of suffering, surely speaks to anxieties beyond the ordinary fears of death and disease.”

Harper has worked with dementia patients as a nursing home chaplain and seen dementia-related deaths in her family. While working on the book, she learned that both of her parents carry one copy of a gene variant linked to late-onset Alzheimer’s disease: “I have a 50 percent chance of having a single copy of the gene, which doubles or triples my risk of developing the disease. I have a 25 percent chance of having two copies, which elevates my risk by eight to 12 times, giving me a 51 to 68 percent chance of having Alzheimer’s by the time I am 85.”

She writes without fear or aversion but with a robust, restless curiosity, a keenness to reframe our understanding of dementia with sensitivity and accuracy. She has not merely observed decline in patients and family members; she has also observed fresh opportunities for “compassion, honesty, humility.” The writer Floyd Skloot described his own dementia by saying, “I have been rewoven.” He was astonished to find his bonds with his family deepening: “Love and passion entered my life for the first time in decades.” The dementia activist and author Kate Swaffer confessed the same to Harper, marveling at a new clarity and sense of purpose. “Dementia is full of paradoxes,” she reported. “I know so much more than I did before.”