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What One Family Can Teach Us About the Quest to End Dementia

Genetic tests might soon reveal our neurological future. Will we want to know?

Barb was alone when she saw the letter.

It was late afternoon in Denver, one of the first days of autumn, not yet freezing. The house was silent, the kids at soccer practice, Dave not yet home from work. She had spent ten years not knowing and a full year dodging calls from a lab. In that year, every piece of mail from Rochester, Minnesota, landed in the trash, unopened. Each day, she made it from home to her office and back again, knowing that her fate was in a file at the Mayo Clinic—waiting for her to hop on a plane so that she could learn the results with, per the lab’s protocol, a “companion of your choice.” For news like this, she was not supposed to be by herself.

Barb had always considered herself a problem solver, perpetually hands-on in her career and her parenting and her marriage and her community. She threw herself into her work, facing down the logistical challenges of urban-planning projects that could help the city and improve the lives of others. Now, helping herself felt impossible. She made excuses: school was starting, Dave had a trial, the kids had soccer season. She was humiliated, feeling so paralyzed. She’d tried to put not knowing out of her mind, but she’d learned long ago that there was no way not to think about it. You can pretend you are as normal as everyone else you see at work, on errands, out with friends. But day and night, the worst-case scenario is your constant companion.

And now, another letter. Barb picked it up. It seemed different from the others, thick enough not to seem like a formality. Right then, she knew she was out of excuses. Her future was in her hands.

That day, Barb was forty-one, about the same age her mother was when she started to change. And then a sister, and another sister, and two more, and now a brother—five of the nine of them, so far. The symptoms were subtle at first—missed appointments, an uncharacteristic aloofness, an end to deep conversations. Slowly, impulse control and emotional depth became things of the past. Some of them simply stopped doing much of anything, ignoring their children and spouses. Others developed unpredictable, impulsive behaviour, losing all semblance of empathy or a conscience; they broke laws or had affairs or drank with abandon. Still others took on an entirely new set of opinions and beliefs, all while maintaining a blithe, carefree disposition. Only gradually did it become clear that something ineffable about that person had been lost.

The final stages of the family’s disease resembled more common neurological disorders like Alzheimer’s, only striking much earlier in life. Long before their old age, they would lose the ability to earn an income, look after their children, do household chores, or take care of their hygiene. They were eventually unable to speak, feed, dress themselves, or use the bathroom on their own. And while their decline might have been swift, the end wasn’t: people with their specific genetic mutation tend to live a normal length of time, which means each afflicted person requires decades of long-term care. And once they die, the story isn’t over: their children have a fifty-fifty chance of carrying the mutation too.

They all struggle for a way to explain how this feels. An earthquake or hurricane or war comes close, only a strange science-fiction version, something not visible or experienced by anyone but them; a disaster existing only inside their family’s genetic code. There are the facts—it’s inherited; any one of us might have it—and there are the deeper questions raised by those facts. What is it like to witness a person you love start to gradually disappear—a beautiful person, smart and accomplished, now altering fundamentally? How do you feel safe, knowing that it is in your family’s essential nature for your identities to be fragile, ephemeral, ever close to expiration? If you were going to lose yourself too—in a year or two or ten—would you even want to know?

When we think about our lives in the years to come, few scenarios frighten us more than dementia. The idea forces us to confront the darker aspects of getting older—not where we want to be or what we want to be doing but how much longer we’ll go on being the person we recognize as ourselves. That question........

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