Book Excerpt: Emma Heming Willis on Her ‘Unexpected Journey’

But, in hindsight, that wasn’t the Bruce I knew. Especially when it came to connecting with his daughters. Bruce was a family man at heart. Early on in our relationship and before we had children together, he wanted to spend as much time with his older girls as possible. If we were traveling, he was always dying to get back to them, calling the feeling a “gravitational pull,” which always brought him back to his girls. This was something I loved about him. Today, I understand that him checking out at the table was likely due to cognitive overload — difficulty processing conversations, which is common in primary progressive aphasia (PPA), the variant of FTD that Bruce has. It was an early symptom of his disease.

Many families spend years living with a lot of confusion around symptoms prior to a diagnosis. From speaking to other care partners, I have learned how subtle (or not so subtle) symptoms of certain forms of dementia like FTD or Lewy body, for example, can rock a whole family system and destroy it. (This is not always the case with other dementias like Alzheimer’s, where symptoms like memory issues are more obvious. Each form of dementia is different, which is why it’s important that all types of dementia are not lumped together.)

For FTD in particular, in those early years, no one suspects the diagnosis because most people have no clue what FTD is. So, they assume their person is being rude, apathetic, withdrawn, depressed, irritable, impulsive, reckless or lacking empathy—an array of behaviors that seem like personal choices rather than symptoms of a disease. This major shift in behavior, language, and/or personality is frustrating, confusing, and can ruin relationships. FTD is not your doctor’s first or second thought either. Often FTD is misdiagnosed as a midlife crisis, depression, or bipolar disorder, to name just a few, because the symptoms can apply to all those conditions.

Bruce Miller, M.D., the leading expert in FTD, professor of neurology at the University of California, San Francisco, and head of the Global Brain Health Institute, explains: “Many of the symptoms are very elusive, and they are different for each neurodegenerative disease. So, while it may be easier to recognize that a memory problem is Alzheimer’s, it’s trickier to understand that a change in language or personality is FTD or another form of dementia. Most of us think about the brain as important for memory and language. But the brain is also responsible for our social interactions — how we relate to others and how we nurture and empathize with them.”

Most of us don’t know this or anything else about FTD, and all you see and experience is that something is incredibly different with your loved one. Also, if you’re like I was, you may feel strange bringing these things to the attention of your partner’s doctor—especially if that doctor is not your doctor, too. Initially, I was uneasy going over Bruce’s head in that way. Something about the morality of it didn’t sit well with me. If you feel that way, too, consider the advice of Yolande Pijnenburg, a professor of young-onset dementia at Alzheimer Center Amsterdam at the Amsterdam University Medical Center in the Netherlands: “If your feeling gets stronger that this change in behavior is something that person can’t help, you have to trust that feeling because you’re actually acting to benefit your partner.”

Subtle changes due to dementia can go on for years, and all that time your person looks fine on the outside. Even more bewildering is that there might never be a moment when he or she expresses concern that something is wrong to you or to a doctor. There’s actually a medical term for this: anosognosia. The National Institutes of Health (NIH) defines anosognosia as a “neurological condition in which the patient is unaware of their neurological deficit or psychiatric condition.” So, if your person isn’t raising his or her hand for help, it’s easy to think that maybe everything is okay. This makes those early stages confusing, and it’s FTD and other early-onset dementias that doctors can easily overlook again and again.

“It can take at least two to three years to get a diagnosis, and in that time, many people are misdiagnosed,” explains Miller. This delay can be a catastrophe, as families can be completely derailed and dismantled—emotionally and financially—by the personality changes and shifts in their loved ones from their brains quietly dying.

Over time, I began to suspect that the issue wasn’t Bruce’s hearing or a rocky patch in our marriage, and that instinct made me realize that we should go to the doctor. As a result of this experience, I can’t stress enough the importance of trusting your gut when you know something is wrong. Even if test results come back “normal” or a doctor dismisses your concerns, don’t stop pushing for answers. If your doctor isn’t listening, find one who will. You know your person best. Keep advocating for them and yourself.

I felt some relief in finding out that Bruce had aphasia and then later finding out he had FTD. With those diagnoses, I finally understood that those crazy marital issues were not Bruce. Neither were those off moments and subtle shifts in his personality. They were the result of his brain being dismantled and taking part of the husband I knew and loved with it.

You weren’t doing any of this on purpose, I thought as I looked over at him. You were there the whole time.

Leland Foster

Adapted from The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path by Emma Heming Willis, published by The Open Field, an imprint of Penguin Publishing Group, a division of Penguin Random House, LLC. Copyright © 2025 by Emma Heming Willis.