Bruce Willis' wife Emma Heming Willis is getting candid on the impacts of dementia.
The model and entrepreneur, 44, opened up about the "beautiful" community of patients and caregivers she's met during an Instagram Live discussion about the stigmas around the disease with dementia specialist Teepa Snow on Friday.
"It's definitely very lonely," said Emma, after announcing last month that Bruce, 68, was diagnosed with frontotemporal dementia (FTD). "Which, the blessing for us to be able to come out with our family's statement was to be able to have a community, and how beautiful is this community?"
She expressed her gratitude for "the amount of love and compassion that we've received" since sharing the statement.
Emma also clarified her recent request for paparazzi and fans to stop yelling at him in public and to give him space. "I'm not asking for privacy, I'm just asking for respect of my husband and his disease," she explained.
She and Snow also discussed some stigmas that still surround all forms of dementia, including making assumptions about what someone with a diagnosis is able to do.
Snow said they've learned with Bruce that "basketball is still an option, but we've got to slow it down a little bit and simplify it a little bit," adding: "But it's still possible. Do we want to do it? Yes, because it preserves so many other abilities."
Emma announced in an Instagram post on Feb. 16 that Bruce was diagnosed with FTD, nearly a year after his family initially shared in March 2022 that he had been diagnosed with aphasia and would be stepping away from his acting career. She wrote that "Bruce's condition has progressed and we now have a more specific diagnosis: frontotemporal dementia."
"Unfortunately, challenges with communication are just one symptom of the disease Bruce faces. While this is painful, it is a relief to finally have a clear diagnosis," she added.
Frontotemporal dementia is an all-encompassing term for a group of brain disorders that threatens the frontal and temporal lobes of the brain. This means that parts of these lobes atrophy, and the shrinking of these areas can cause speech issues, emotional problems and changes in personality.
Other symptoms can include loss of motor skills — problems walking, swallowing or muscle spasms. Symptoms tend to get worse over time. Patients typically begin to notice symptoms between 40 and 65 years of age, but it can affect people who are younger. It is the most common form of dementia for people under 60.
Following the announcement of his diagnosis, Emma worked with Snow to learn how to navigate Bruce's condition. On Feb. 28, she thanked Snow for her help in adding some important knowledge to her "dementia care toolbox."
"I'm grateful I had the opportunity to work with @teepasnows_pac," she wrote on Instagram. "She's a loving, compassionate and skilled leader in this space who navigates herself with pure empathy. She's a gift. Head to the link in my bio as her website has a wealth of caregiving information you might find useful too 💌 #dementiaawareness #ftdawarness #EndFTD #EveryFTDStoryCounts."
Emma has also thrown herself into doing more advocacy work to bring awareness of frontotemporal dementia. She attended her first fundraiser last week, AFTD's Hope Rising Benefit in New York City, which raised money in support of the organization in order to help those affected by the disease.
Since Bruce's diagnosis, his family has been helping him "live as full a life as possible."
They wrote in a statement shared on the Association for Frontotemporal Degeneration's website: "Bruce has always found joy in life – and has helped everyone he knows to do the same. It has meant the world to see that sense of care echoed back to him and to all of us."
"We have been so moved by the love you have all shared for our dear husband, father, and friend during this difficult time," they said. "Your continued compassion, understanding, and respect will enable us to help Bruce live as full a life as possible."
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