Bruce Willis is losing his language, wife Emma Heming Willis says

Welcome our friend Diane Sawyer back to the desk. You have an exclusive interview with Bruce Willis' wife. That's right, coming up. And it's about his diagnosis of frontotemporal dementia. Had you heard about it? Not at all, no. I hadn't either, until Bruce. And here's the thing, 50,000 families in this country this morning are dealing with this disease. And it's not Alzheimer's. It tends to strike early. The mean age is 56. And this is why Emma Hemming, while Melissa's speaking out, she wants to help caregivers know they're not alone on this hard path ahead. Diane. You're here. I'm here. Here we are. Oh, it's great. It's so nice to see you. It's so nice to see you. This is Emma Hemming Willis, a self-described lifelong introvert. See if you're comfortable. Stealing herself to talk in front of cameras. Okay. Something she never sought and never planned. For 16 years, she's been the shy wife of the irrepressible Bruce Willis, one of America's favorite action stars. Welcome to the party, pal. He could take down a battalion of bad guys and then nail an old Bing Crosby song. Oh, won't you rather be a fish? A fish is an animal that swims in a brook. You can't write his name or read a book. The all-American kid from New Jersey, who built a towering career, more than 70 movies. Hey, I'm John McClane. And of course, that beat up cop who rouses himself to save the world one more time. Come out to the coast and get together, have a few laughs. It's the king of the blockbuster franchises, Die Hard. And in person, he was the mischievous guy who urged everyone to sing and celebrate life every day. He dropped by year after year at Good Morning America. Well, Bruce Willis dropped in the other day. Now, Bruce Willis. Bruce Willis. Bruce Willis. Oh, no. You are so cool. You are really cool. Even in the commercial breaks, we keep talking about everything. After he and actress Demi Moore divorced, he pushed me to set him up with a nice girl. And are you sufficiently ready? Can I interview Diane tonight? Can't you find me? You know what I discovered? You find someone for me. You must meet so many people. You say that, but. And then he found her, his quiet dream girl who shared his working class values, a model who helped earn money for her family and most of all, dreamed of a stable home. And as we said, Bruce Willis grew up in Blue Collar, New Jersey. He was just 29 years old when he changed the game on TV in a new series called Moonlighting. Could I have a minute of your time, please? Take two. They're small. What can make me feel this way? My girl. My girl. Opposites attract. And I just love watching him be him. 16 years ago, they had a tiny wedding on the beach and the joyful ride began. They were the famously blended Willis family, two marriages, five daughters, his oldest daughters, Rumor, Scout, and Tallulah. And then with Emma, he has two more girls, Mabel and Evelyn. The original girl dad. One of the best. And the thing he said most was live it up. The exact quote, live it up every moment, every day. It'll be over in a ginger snap. Yes, can be. And now 49 year old Emma Hemming Willis is going to tell the story of an unexpected journey. She has written a book shining a light on the little known disease that ambushed her husband three years ago and giving a lifeline to caregivers. If they are reeling, panicked, so was she. She says the subtle symptoms began when she noticed the boy and girl dad seemed subdued. For someone who is very talkative and very engaged, he was just a little more, more quiet. And when the family would get together, he would kind of just melt a little bit. He seemed to be losing words. A childhood stutter reappeared and he was just less engaged in their lives. Felt a little removed, very cold, not like Bruce, who is very warm and affectionate to going the complete opposite of that was alarming and scary. Imagine a marriage that has been tight and beautiful and suddenly the person that you're living with has no empathy or concern for you or your family. Dr. Bruce Miller, he is not Bruce Willis's doctor, but he is a leading expert on frontotemporal dementia. The disease Emma Hemming Willis had no idea was stalking her family. It strikes early, the mean age is 56. This is really the unknown disease. People weren't aware of it really until the 1990s. The research on this has really just begun. You know, FTD can be diagnosed as bipolar, midlife crisis, depression, and you know, and a lot of doctors don't know about FTD. But finally, a brain scan confirmed Bruce Willis has the black belt of dementia. FTD is the dementia that savagely eats away at the front and sides of the brain, causing a person to start losing words, dimming connection to others. When you notice a change in someone you love, how do you track it? I think the constellation of symptoms, loss of drive, loss of empathy, addiction, compulsive behaviors, loss of executive control, these symptoms becoming progressive is very, very worrisome. When her life is cracking apart, she's given a pamphlet and told there's nothing to be done, no cure, no hope. And to leave there with no, with nothing, just nothing, with a diagnosis I couldn't pronounce, I didn't understand what it was. I can only imagine the panic. I was so panicked and I just remember hearing it and just not hearing anything else. It was like I was free falling. And how did Bruce react? I don't know if he was reluctant or not to go to a doctor or if he even understood there was a reason you were doing it. I don't think Bruce ever really connected the dots. Dr. Miller says this is a common reaction of FTD patients. The patient is incredibly unaware of what is happening. I think the parts of the brain that allow us to suffer and self-reflect are lost very early in front of dementia. A family sees an old life retreat forever into memory. An inevitable new reality arrives. Bruce is still very mobile. Bruce is in really great health overall. You know, it's just his brain that is failing him. But the language is... Yeah, the language is going. And you know, we've learned to adapt and we have a way of communicating with him, which is just a different way. Were there days that it would be Bruce again? Yeah, I mean, we still get those days. Not days, but we get moments. It's his laugh, right? Like, he has such a hearty laugh. And you know, sometimes you'll see that twinkle in his eye or that smirk. And you know, I just get like transported. And it's just hard to see. Because as quickly as those moments appear, then it goes. That's hard. But I'm grateful. I'm grateful that my husband is still very much here. And I did have time with Bruce. I had some time to spend with him. And I'm going to tell you all about that tonight. But Emma is sharing this story with us, because getting the diagnosis is so important. There are clinical trials underway, if you can diagnose it early enough. It's so hard to be diagnosed because it masks so many other different things. Elusive things. And even doctors don't recognize exactly what it is. The bleeding in and out has got to be so painful. Yes. And again, with all those memories of this vibrant man who wanted to live life every day. And now they have a different journey ahead, the unexpected journey. And coming up, we're going to learn a lot more about it. Emma's book, The Unexpected Journey, Finding Strength, Hoping Yourself on the Caregiving Path, is in store September 9th, available for pre-order now. And we're gonna hear more from Emma on her journey as a caregiver in our next hour. And Emma and Bruce Willis' The Unexpected Journey, a Diane Soares special, premieres tonight at 8 Eastern on ABC. It streams tomorrow on Disney Plus and Hulu.