Emma Heming Willis says her family was thrown into a medical maze after Bruce Willis was diagnosed with frontotemporal dementia, leaving them without a roadmap, a treatment plan or even hope when they left the doctor’s office.
Now she is using that experience to push California lawmakers to act. In an op-ed, Heming Willis urged support for Senate Bill 1047, which would require the California Neurodegenerative Disease Registry to begin collecting data on every frontotemporal dementia diagnosis statewide. She said the family walked out after being told to check back in a couple of months, a delay that reflected how little the disease is understood even in medicine.
Her message lands at a time when the gap in diagnosis is part of the disease itself. Heming Willis said the average time to receive a frontotemporal dementia diagnosis is three to seven years, and that many clinicians are not trained to recognize the early signs. Patients are often first told they may be dealing with depression, a midlife crisis or simply getting older, she said, and many are sent to talk therapy or marriage counseling instead of neurological care.
That lag matters because frontotemporal dementia is the most common early-onset dementia for people under age 60. Heming Willis argued that without counting cases, California cannot fully measure how many families are affected, where resources are needed or how doctors should be trained to spot the illness sooner. California already requires data collection for Alzheimer's, Parkinson's, multiple sclerosis and amyotrophic lateral sclerosis, but she said it does not track every FTD diagnosis.
The bill was proposed by Senators Roger Niello and Ben Allen, and it would put frontotemporal dementia into the state's existing system of neurodegenerative reporting. New York passed a similar law last year and created what Heming Willis described as the first FTD registry of its kind in the nation, offering a model for other states that want a clearer picture of the disease.
The friction in her appeal is plain: the disease that upended her family is also the one most likely to be missed. Heming Willis said the absence of tracking is not just a paperwork problem but a barrier to research, clinician awareness and the allocation of care. That makes the next decision in Sacramento more than a state health measure. It will show whether California is willing to start counting a disease it has so far left largely invisible.
