The experiment was, in the researcher’s own words, “really mean.” Patients with a rare brain disease sat with headphones and sang along to the Temptations’ “My Girl” as the lyrics scrolled. Then the backing track was stripped away and they watched themselves warble a cappella, wired to heart, blood-pressure and sweat sensors, while graduate students next door coded their faces for nine emotions. Fewer than half the patients showed embarrassment. Three-quarters of healthy controls did. “People who are healthy controls, their heart rate goes up and there’s hand sweat,” Virginia Sturm told Robert Kolker. “And in FTD, there’s just nothing.”
Frontotemporal dementia is not the memory loss most people picture. It strikes the machinery of social awareness. Patients become impulsive and apathetic and lose any sense of shame; some start drinking, leave jobs or marriages. They usually do not believe they are changing. “The people who love them,” Kolker writes, “are obliged to make friends with a stranger.”
What the science found
Kolker’s essay, adapted from his book “The Vanishing Family,” walks from the 19th-century discovery of localized brain function through David Ferrier’s 1878 theory of inhibition — that one of the brain’s most important jobs is to refrain from doing things — to Bill Seeley’s 2007 identification at UCSF of the “salience network,” the circuitry that triages the fire hose of sensation and decides what deserves attention. “The job,” Seeley said, “is to determine how much things matter.” When it is damaged, people lose their way; the same network shows changes in schizophrenia and autism. Personality, it turns out, is partly a set of neurons tailored for living among other people.
The philosophy is where the essay lands. Merleau-Ponty argued identity is “embedded” in the body over a lifetime of glances and gestures, so as long as the body remains there is some self to see. The British lecturer Harry Lesser went further and picked a side: a person with even serious dementia retains their identity, because “identity by definition is not momentary,” and because we are all liable to such changes — in them, the liability was actualized. The mistake to avoid, he wrote, is believing the loved one is gone, an error “that can destroy or damage hope and make a bad situation worse.”
Our read
This desk spends a great deal of its time with families who are somewhere on this road, and the Review essay puts words to the part no plan can fix. What a plan can fix is smaller and very concrete. A person whose salience network is failing will make decisions — about money, about a house, about a stranger on the phone — without the alarm that used to go off. The law does not ask whether they are still themselves. It asks who has authority to act for them, and if the answer is nobody, it appoints a court.
So the planning move is the document: a durable power of attorney and a health-care directive, signed while the person signing them is unquestionably the person deciding. The second move is the account structure — a trusted contact on every brokerage account, a co-signer or view-only access for an adult child, spending alerts. Those are not admissions that someone is gone. They are the family’s way of agreeing with Lesser: the person is still here, and we are going to keep them safe while they are.