Emma Heming Willis, the wife of actor Bruce Willis, said it is “hard to know” whether the Hollywood star is aware of his diagnosis with frontotemporal lobar degeneration (FTD) – a rare type of dementia for which there is no known treatment or cure.
Appearing on the “Today” morning show, Heming Willis said “dementia is hard,” not just for the person diagnosed, but also for their family.
“When they say that this is a family disease, it really is,” she said Monday, in an appearance timed to coincide with the beginning of World FTD Awareness Week. Heming Willis has two daughters with the 68-year-old star, whom she married in 2009.
In February, Willis’s family announced he had been diagnosed with FTD, a category of dementia that affects the brain’s frontal and temporal lobes and mostly shows up in people between the ages of 40 and 60.
Heming Willis said that “finally understanding what was happening” in the form of a diagnosis was “a blessing and a curse.”
In March 2022, Willis’s family said in a statement that he was retired from acting, citing a communication disorder known as aphasia, which later progressed into FTD. According to experts, the condition can affect movement, speech and behavior and is commonly misdiagnosed as depression or bipolar disease.
When asked whether Willis knows “what is going on,” Heming Willis shrugged her shoulders and said she was unsure.
“One of the things that the frontal lobe controls is self insight,” Susan Dickinson, CEO of the Association of Frontotemporal Degeneration, said on the same show. She said this can make it hard to tell whether patients understand what is happening to them. “[For] some people, it’s the first thing they lose, any understanding that they themselves have changed, and other people retain that for a long time,” she said.
Heming Willis told “Today” that she calls herself a “care partner,” rather than a caretaker, and expressed how emotionally challenging it can be to look after a loved one with the diagnosis.
“It’s really important for me to look up from the grief and the sadness so that I can see what is happening around us. Bruce would want us to be in the joy,” she said.
In March, Heming Willis urged paparazzi to keep their distance from her husband, who she said was still being hounded by photographers despite his diagnosis being made public.
“Please don’t be yelling at my husband, asking him how he’s doing,” she requested in a video. “Allow for our family or whoever’s with him that day to be able to get him from Point A to Point B safely.” Heming Willis explained at the time how “stressful and difficult” it can be for people caring for those with the condition to help them navigate the world.
About 50,000 to 60,000 people in the United States have FTD, according to the Association for Frontotemporal Degeneration, citing a 2011 study. In some cases, the condition is inherited, and in others, its causes are unexplained, experts say. “When FTD reaches its final stages, all persons diagnosed will require total care,” the organization states.
On Monday, Heming Willis described her husband as “the gift that keeps on giving,” adding that he was teaching the family “love,” “patience” and “resilience.”
Willis reiterated that she believed it was now her mission to raise awareness of the condition and provide comfort to others that they are not alone, though she said she had some hesitation about taking center stage.
“For me to be out here doing this; this is not my comfort zone, but this is the power of Bruce,” she said.