Review: The Vanishing Family by Robert Kolker

I was drawn to this book because my grandfather had the disease that shatters its titular family: frontotemporal dementia, also known as FTD. This disorder is sneaky, and as is deftly explained in the text, has long been misunderstood and understudied. It is not a form of Alzheimer's—which has a much buzzier reputation in the neuroscience community—it's a form of dementia, the true umbrella term for these degenerative diseases. And unfortunately, not being Alzheimer's is more of a curse than a blessing.

FTD typically begins development between one's mid-forties and early-sixties, but it's hard to recognize immediately. Unlike Alzheimer's, FTD has little to do with memory. Instead, it has nearly everything to do with "personality." As the name may reveal, FTD only affects two parts of the brain: the frontal and temporal lobes, responsible for behavior, inhibition, emotional regulation, etc. (and language comprehension/speech, but that's not covered as much in this book). So one's descent into the disease may disguise itself as many other things: anxiety, depression, alcoholism, or simply having an off week. It isn't until a years-long pattern emerges (or a truly concerning infraction has been committed) that people realize the true cause of this behavioral shifting. And unlike Alzheimer's, FTD has no effect on life expectancy. This drops an unbearable burden onto the patient's family—decades of nonstop caregiving.

The Vanishing Family chronicles the lives of nine siblings as they realize why their mother retreated into herself as she aged and that they each have a 50% chance of inheriting the same fate. This is due to the V337M mutation of the MAPT gene and is far from any sort of cure.

Admittedly, I am not sure whether my grandfather's FTD was genetic or random, but given that we have no further family history of the symptoms and that my mother is 62 with none either, I'd like to be optimistic. And while I can live in this optimistic land of uncertainty, the same cannot be said of the members of the "vanishing family."

I had the immense honor of attending the launch event for this book while, at that point, I had admittedly only read a third of it. This led to a confounding experience. As the event began, Kolker disclosed that some of the family members were in the audience. Jenny (one of the core siblings), Annika (her daughter), and Julian (Annika's husband), were seated directly in front of me. That's amazing, I thought. They're so strong to dedicate their lives to this cause that has taken so much from them and the people they love.

As Kolker spoke, I noticed Jenny furiously nodding. A bit more than most people would, but she might've just been a very active listener. Then, she began to repeat what had just been said to a stranger next to her. This happened several times. I saw her try to get up and leave, and that's when I knew. Because the urge to flee—that was my grandfather.

I realized in real life that Jenny had FTD. I had just been reading about this steadfast woman, and suddenly I saw her future in the present. I hadn't gotten to the verdict on her genetic coin flip in the book yet. A unique experience. Sobering.

Later in the evening, I spoke with Annika and her husband about their thoughts on the book and hopes for FTD research. Again, I was in awe of their dedication and strength, especially having just realized Annika's mother has the disease.

I finished the book by the end of the week. And while I thought I was braced for what was to come, I was sorely mistaken.

That woman I spoke to, who was so strong despite what her family has gone through, who shone bright and alive and brilliant, who is only a few years older than me, she's been tested. And she's positive.

She can't bask in the optimism of not knowing, because she does. She sees her fate every day in her mother.

Once I read this, a wave rolled over me. Of sympathy, of sorrow, of fear. It's a weird thing, I imagine, for your medical future to be public. And a weirder thing that she probably assumed I knew it, yet I didn't.