My Husband Was Diagnosed With Dementia at 36. Here’s How I First Knew Something Was Wrong

In 2016, Kristin Holloway’s 36-year-old husband, Lee, suddenly lost interest in his job and stopped taking care of his personal hygiene, among other drastic behavioral changes. His doctors suspected he was experiencing psychological distress—but after a series of tests, Lee was diagnosed with frontotemporal degeneration (FTD), the most common type of dementia in people younger than 60. Now, Kristin sits on the board of The Association for Frontotemporal Degeneration, where she helps fund FTD research and innovation. Here’s her story, as told to health writer Julia Ries.

Lee and I started dating in early 2013. We first met when we worked next to each other at his company, an internet security firm, for a couple of years. I didn’t expect things to turn romantic, but he separated from his wife around the time I ended an engagement, and we started to bond over our breakups over a lot of coffees and conversations about life. The relationship took off, and we got engaged in 2014.

Lee struggled with migraine for a long time. Even before we started dating, he slept a ton, got overly exhausted, and missed work due to his symptoms. When we got together, he said he wanted to fix his health and get to the bottom of his migraine attacks.

Because some studies suggest that heart murmurs might contribute to migraine, he was evaluated for a heart murmur he was born with at Stanford University. Some of his doctors recommended that he have surgery—specifically, an aortic valve replacement—to correct the murmur, and, the hope was, alleviate his migraine. We decided as a couple that sooner was better than later and scheduled the surgery for February 2015, even though our wedding was approaching.

Lee’s six-and-a-half-hour open-heart surgery was a success, and everything moved ahead: He recovered as I continued to work full-time and plan our wedding, and eventually, he felt well enough to return to work. In June of 2015, we flew to Hawaii and got married. It was a beautiful wedding, and we had an amazing honeymoon. Afterward, we returned home to San Francisco. Everything seemed good and normal, and in January of 2016, I found out I was pregnant.

In May, a little over a year after his surgery, things changed. Lee started regularly missing work and going in very late—more than he ever did in the past. He was given a performance improvement plan, which was shocking. This was his company, he was one of the founders…it didn’t make sense. He stopped showering every day, and he’d wear one outfit to work on Thursday, then on Friday, wake up and put the exact same clothes back on. This was odd: He’d always taken pride in his appearance.

I didn’t know what to do. I was six months pregnant and about to go on maternity leave. Lee was clearly struggling, so I suggested he take time off of work to rest. I thought that, maybe, he was still recovering from the surgery and possibly dealing with trauma from it. Eventually, he agreed—and in July 2016, he stepped down from the tech company. I was shocked and devastated, but I was also really concerned about his health and how he was acting. He was increasingly apathetic and didn’t seem as engaged in life. He just didn’t care as much about things he cared about in the past.