Christy, a pharmaceutical executive in New Jersey, hadn’t turned 40 when her company let her go for no reason anyone could name, and she began slipping away from her family. A few years later her husband divorced her; the child-support money he sent ended up in a heap of cash on the table, and she stopped cooking for the kids. A leading New York hospital at first found nothing to name. It would be years before anyone in her family said the word dementia — and by then, Robert Kolker’s The Vanishing Family recounts, the same thing was happening to her sisters.
Reviewed in this weekend’s Journal by Jennie Erin Smith, a Science magazine reporter with her own book on Alzheimer’s families, Kolker’s account follows nine siblings from an Irish Catholic family in Pennsylvania; five developed frontotemporal dementia in their 40s or 50s, starting in the 1990s. The disease settles into the parts of the brain that handle judgment and emotion, sometimes speech. Where Alzheimer’s takes memory, FTD leaves it mostly alone until late and strips out executive function — the everyday machinery of running a life. Once-accomplished people, the reviewer writes, can end up in homes full of trash and unpaid bills, and careers and marriages collapse before anyone suspects a diagnosis. Inherited forms, driven by gene mutations, recur down the generations.
Two lives at a time
The story is told mostly through Barb, the youngest, who suspected the illness ran in the family and went looking for someone studying it, reaching Bradley Boeve of the Mayo Clinic, one of the few researchers who never left the field. After watching the same behaviors surface in one sister after another, she couldn’t bring herself to hear her own genetic test result. Sue — unmarried, once a parole officer — took Christy on, and decades later she’s still getting her sister washed and to the bathroom every morning; FTD often leaves a normal lifespan intact. Jenny knew she carried the mutation and still couldn’t see the illness in herself, even after a doctor’s diagnosis; the first thing FTD takes, the reviewer notes, is the ability to see what it’s taking. “Dementia never claims only one life. It’s always a minimum of two,” Smith writes.
Our read
This is the case we have in mind when we say incapacity planning belongs in midlife, not retirement (Estate). Every document that matters here — a durable power of attorney, a health-care directive, a trusted contact on the accounts, a successor trustee if there’s a trust — has to be signed by someone who still has the capacity to sign it. FTD takes judgment and bill-paying first, while memory looks fine, so the window can close in a person’s 40s without anyone noticing it was open. The unpaid bills the reviewer describes are what an unsigned plan can look like.
Two more items belong on the list (M11). Disability income coverage can be the check that replaces the paycheck when the job goes before the diagnosis does — a policy you own outlives the job; the employer’s plan generally doesn’t — and because it’s usually underwritten on health, it’s bought while you’re well. Long-term care — Sue’s decades of mornings — is a caregiving cost first and a financial one second, and Medicare generally doesn’t pay for custodial care. And a hard truth for families with a known mutation: federal genetic-privacy law generally protects health coverage and jobs but not life, disability or long-term-care underwriting, so the order of operations is a conversation to have with counsel before anyone gets tested. If there’s dementia anywhere in your family tree, the fifteen minutes to spend are on the signatures — while every one of them is still yours to give.