Dia Dipasupil/WireImage Emma Heming Willis shared how she had "no guidance" when husband Bruce Willis was first diagnosed with frontotemporal dementia in 2022 She tells PEOPLE she learned that a caregiver needs to tend to their own needs as well as their loved one's needs Now an advocate for caregivers, she was honored for her work at the Women's Alzheimer's Movement Forum at the Cleveland Clinic Lou Ruvo Center for Brain Health WhenBruce Williswas diagnosed withfrontotemporal dementiain 2022, his wife,Emma Heming Willis, was given almost no direction about what to do next. "We received a diagnosis and sent away with no hope, no guidance, no nothing, and I really had to figure out how to put resources into place," Emma, 46, tells PEOPLE. "And it was a lot of searching the Internet, trying to figure things out." The entrepreneur, author and founder ofMake Time Wellnessvowed to learn everything she could about her husband's condition. But while researching and speaking to experts, the mother of two — she andWillis sharedaughtersMabel Ray Willis, 13, andEvelyn Penn Willis, 11 — put everyone else's needs ahead of her own. Theo Wargo/Getty "I think that was my downfall. I thought that that's what I was supposed to do," she said. "What I've learned in all of this is that the most important person is the caregiver. We have to care for the caregiver, because when we care for ourselves, we can then show up for the person that we love." Since that diagnosis, Emma has become an advocate for caregivers, a role she was thrust into without warning. Arguing that caregivers need more support, awareness and guidance, she wrote a book,The Unexpected Journey, about her experience. "It's the book that I still need. For me, it's like I'm not at the end of this journey. I'm in the midst of it. I love it for myself as my own kind of personal roadmap. It's really helped me. And the hope is that it will help someone else," she said of the work, which will be released on Sept. 9. "My hope is that one day, when a neurologist diagnoses someone with dementia, that is the roadmap that they put in this new caregiver's hands." She later added, "One of the most important and surprising truths I learned while writing the book, and something echoed by 25 experts and specialists I interviewed for it, was this: The best thing that you can do for the person that you love is take care of yourself. Why? Because the ecosystem of care doesn't work unless the caregiver is cared for." It allowed her to be more present for Bruce. When theDie Hardactor, now 70, was diagnosed, Emma was left with unanswered questions. "I went out, I searched for answers, I put together an incredible team, and that's a privilege. Most Americans are not able to do that," she said. "So with that, it is my responsibility to be able to pass all this information that I've learned onto the next caregiver." For her advocacy, Emma was honored in Las Vegas at the Women's Alzheimer's Movement Forum at the Cleveland Clinic Lou Ruvo Center for Brain Health on May 26. "I was so nervous in those early days because I was so scared about [Bruce's diagnosis] getting out before we were ready for it to get out. Hearing how people talk about dementia and hushed tones, that was not going to work for me," she said in a video before receiving her award. "There was nothing that Bruce did that could have prevented it, and there was nothing that we as a family were going to be ashamed of. "We have two young daughters, and I never wanted them to think this was some kind of dark family secret. No, we're not going to do that. We're going to come out, we're going to be loud about it, and we're going to make a difference. Caregivers need to be cared for. They cannot do this alone, and it's really important to rely on your community, and I didn't know that in the beginning." Never miss a story — sign up forPEOPLE's free daily newsletterto stay up-to-date on the best of what PEOPLE has to offer, from celebrity news to compelling human interest stories. Read the original article onPeople