When my husband, Bruce Willis, was diagnosed with frontotemporal dementia (FTD), our family was thrust into a world we were totally unprepared to navigate. I want to share what that experience is like for FTD families like ours, and why a simple change in California state law can make a meaningful difference.
When Bruce got his diagnosis, we walked out of the doctor’s office without a roadmap: No plan of action, no treatment, and no hope. Our doctor just told us to “check back in a couple of months.” As a wife and mom, I was already frozen with fear about the changes happening in our lives. Now, even with the FTD diagnosis in-hand, there was no playbook for how to navigate the disease.
For most FTD families, this moment comes only after years of doctor’s visits. On average, it takes three to seven years to receive an FTD diagnosis, in part because many clinicians are not trained to recognize its early signs. Patients are often misdiagnosed first with depression, a midlife crisis, or just “getting older.” Often, people with FTD and their families are sent to talk therapy or marriage counseling, instead of getting the neurological care they need.
Those lost years really and truly matter because they delay understanding and support. Time and money that could have been spent on care or participating in clinical trials is lost, relationships are strained or broken, and family finances are often decimated.
One of the reasons this happens is simple: We don’t have the data.
Today in California, every single FTD diagnosis essentially disappears. The disease is not tracked. It does not become part of any dataset that researchers, clinicians, or policymakers can learn from. Without data, there is no clear picture of how many people are affected, or where resources are most urgently needed.
California currently requires the collection of data on diagnoses for Alzheimer’s, Parkinson’s, multiple sclerosis (MS), and amyotrophic lateral sclerosis (ALS). But FTD, the most common early-onset dementia for people under the age of 60, remains invisible in the data. This has very real consequences for FTD families and for scientists searching for breakthroughs.
Senate Bill 1047 would change that. This bipartisan proposal by Senators Roger Niello and Ben Allen would require the California Neurodegenerative Disease Registry to begin collecting data on every single FTD diagnoses statewide – just like MS, ALS, Parkinson’s, and Alzheimer’s.
That is all it asks: count us, see us.
Collecting this data is so important. It will allow researchers to more easily demonstrate the state’s FTD population and identify patterns, driving faster treatment development. It will help educate and remind clinicians to look for this disease in their patients, leading to earlier and more accurate diagnoses. It will give policymakers the full picture and help direct resources accordingly. And it will ensure California families like mine are no longer fighting in the dark, piecing together information on our own.
Last year, New York passed a similar law, creating the first FTD registry of its kind in the nation. California can be next. With the largest and most diverse population of any state, it has the potential to gather data that reshapes what we know about this disease. California really can be an engine of progress for FTD families everywhere.
And as a rare bipartisan-sponsored bill in the California legislature, SB 1047 affirms that everyone across the political spectrum has a shared responsibility to do more for people with FTD.
Greater awareness matters, but awareness alone is not enough. It must be matched with action that leads to better understanding and, ultimately, better care. Bruce’s story, and the stories of so many others, are already part of the public conversation about FTD. They should also be part of the data because being seen is the first step toward being helped.
Emma Heming Willis is an entrepreneur, advocate, and care partner to her husband, Bruce Willis. She is the author of the New York Times best-seller “The Unexpected Journey.”