Opinion: My father’s experience with frontotemporal dementia makes me grieve for Bruce Willis’ family

Editor’s Note: Mitra Salasel is the director of communications at ideas42, a global nonprofit that creates social good through applied behavioral science. She is also one of the founders of Behavioral Scientist magazine. The views expressed here are the writer’s own. Read more opinion on CNN.

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Like many others, I recently learned of actor Bruce Willis’ frontotemporal dementia diagnosis after his family issued a statement that circulated in the media. Unlike many others, I was clearing leftovers from my father’s memorial service when I read the news. I had buried my father, Behrooz, earlier in the week. The previous Saturday night in my childhood home, he had died with his hand in mine after losing a long battle with the very same disease. He was 64.

Thanks to Willis’ family shedding light on FTD, many are learning about this disease for the first time. But few people can comprehend its disastrous and destructive effects. The media has captured some of it: “A ‘heartbreaking’ disease.” “Devastating, prevalent and little understood … the cruelest disease you have never heard of.”

But my family has heard of it. We’ve spent the last five years living with it as we lost my father bit by bit, adapting to its many indignities, powerless as he lost first his impulse control, then his empathy, then his speech, then his mobility and, finally, the ability to swallow and the strength to keep his heart pumping. I know what’s coming for Willis – and his family. It’s something I would never wish on my worst enemy.

FTD is not Alzheimer’s. It can leave the memory intact for quite a while. In my father’s case, he never stopped recognizing his daughters’ faces, not even at the end. FTD impacts younger people, many of whom are in the prime of their lives. It introduces itself in pernicious ways. Some say the disease steals one’s very personhood and leaves behind nothing but shells of former selves in slowly deteriorating bodies.

My sister and I, my father’s main caregivers, chose to tend to him at home. In some ways we were lucky. Even in the midst of some of the more shocking periods of decline that came with his variant of FTD – such as a lack of inhibitions, paranoia, stilted speech (until language and his voice disappeared entirely)…