Emma Heming Willis Opens Up About Caregiving for a Loved One with Frontotemporal Dementia

Last year, Bruce Willis’ family announced that he would be stepping away from acting due to cognitive decline caused by aphasia, a condition affecting the ability to speak and understand. The actor’s symptoms progressed, and in February 2023, his wife of 14 years, Emma Heming Willis, announced that he had frontotemporal dementia (FTD). FTD is a progressive brain condition affecting emotional processing, memory, language abilities, and communication. In her announcement, she said, “(w)hile this is painful, it is a relief to finally have a clear diagnosis.”

The Association for Frontotemporal Degeneration describes FTD as “an inevitable decline in functioning,” with those living between seven and 13 years after the onset of symptoms. There is no cure, according to the association.

Heming Willis has assumed the role of caregiver for her husband. Since the diagnosis, she has been very open about his condition, documenting the difficult journey on social media, hoping to spread awareness.

Heming Willis Offers Advice from Her Experience as Bruce Willis’ Caregiver

In honor of the couple’s most recent wedding anniversary, Heming Willis discussed the difficulties of being a caregiver to a romantic partner. She wrote on Instagram, “[My anniversary] got me thinking about how hard these types of ‘special occasions’ can be on caregivers. When usually our person would acknowledge the event, now their changing brains just can’t.”

She offered advice for those looking for ways to support caregivers of loved ones with frontotemporal dementia. She said, “(i)f you know someone that is looking after someone else, don’t ask what you can do, just do.”

Now, Heming Willis has a message for other caregivers placed in uncertain positions. Her message — her “care partner PSA,” as she calls it — is simple:

  • Take care of yourself: The time and toll of caregiving for a loved one with any form of dementia can lead to caregiver burnout, sleep deprivation, anxiety, and irritability. If left untreated, chronic stress can also put people at risk for chronic health conditions and physical and mental exhaustion. According to Heming Willis, “I have to put my best foot forward for the sake of myself and my family, because again when we are not looking after ourselves, we cannot look after anyone that we love,” she says in the video. She also urged those who are fellow caretakers to remember to take at least five minutes and make a “conscious effort” to do something that makes them happy as an act of self-care.
  • Look for something beautiful: Take a second out of your day to “look for something beautiful,” Heming Willis says, adding the daily experience of watching someone you love suffer can feel like “doom and gloom.”
  • Be part of a community: Heming Willis was propelled to create a community of like-minded individuals who can lean on one another. She tells her followers, “I have to make a conscious effort every single day to live the best life that I can,” adding she does so for Willis and their two children. “It does not come to me easily. I am just doing the best that I can always,” she says.
  • Leaning on others is one crucial way forward: “It’s nearly impossible to put into words the physical, mental, and emotional stress experienced by any caregiver,” wrote Avanlee Christine, founder and CEO of Avanlee Care, which provides remote caregiving. “There’s an unspoken expectation to be selfless, flexible, and available at all times.” There are ways caregivers can begin to take care of themselves, from asking for help, acknowledging their role, and building a support community, like Heming Willis, who has used her platform to bring on experts around dementia and the caregiving community.
  • Educate yourself on the condition: Heming Willis said one of the “most loving and compassionate things we can do” as caregivers and family and friends of people who have been diagnosed with an illness is to “educate ourselves about our loved one’s disease.”
  • Don’t struggle in silence: Caregiving is an admirable and heroic act, yet so many are suffering — and more often than not, doing so in silence. Find others to confide in and those who can provide respite when you need a moment to yourself.
  • Hold onto the memories: Heming Willis also said, “(s)eize every opportunity to unite and celebrate with family and friends. Those are the moments and beautiful pockets of memories that you get to hold onto for a lifetime. And we get to keep those memories safe and alive for the ones that might not be able to.”

In her latest interview, Heming Willis said, “I’m going to continue keeping my head down and focus on this path that I’m on, which is to raise awareness around FTD, to talk about the importance of brain health because prevention is our only glimmer of hope for a cure right now, and how to best support our caregivers who don’t get respite and who don’t get to go on a hike, because that is not lost on me.”

To see Emma Heming Willis’ videos and read more of her advice, follow her on Instagram at @emmahemingwillis. For more tips and insights on caregiving, please read my many articles on the subject here.

Do You or a Loved One Have Dementia? — The Time to Plan Is Now!

Persons with Alzheimer’s and other forms of dementia and their families face special legal and financial needs. If you or a loved one have been diagnosed with dementia, it is prudent to start your planning as soon as possible. If you have not done Incapacity Planning, Long-Term Care Planning, or Estate Planning (or had your Planning documents reviewed in the past three to five years), now is a good time to plan and get prepared! Among other services, we offer peace of mind through our four levels of lifetime protection planning:

Level 1 — Incapacity Planning is about protecting your assets from lifetime probate.

Level 2 — Revocable Living Trust Estate Planning is about protecting your assets from lifetime probate and after-death probate.

Level 3 — Living Trust Plus® Asset Protection Planning provides protection from probate, lawsuits, home care, and assisted living expenses by allowing access to Veterans Aid and Attendance benefits, and nursing home expenses by allowing access to Medicaid.

Level 4 — Life Care Planning, Medicaid Asset Protection, and Veterans Asset Protection provides comprehensive planning and filing services, often at times of crisis, though this type of planning can be done anytime someone is beyond the first step of the Elder Care Continuum, aka Aging Continuum.

Please contact us to make an appointment to ensure that you have the appropriate level of planning in place:

Northern Virginia Elder Law Attorney: 703-691-1888
Fredericksburg, VA Elder Law Attorney: 540-479-1435
Rockville, MD Elder Law Attorney: 301-519-8041
Annapolis, MD Elder Law Attorney: 410-216-0703
Washington, DC Elder Law Attorney: 202-587-2797

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About Evan H Farr, CELA, CAP

Evan H. Farr is a 4-time Best-Selling author in the field of Elder Law and Estate Planning. In addition to being one of approximately 500 Certified Elder Law Attorneys in the Country, Evan is one of approximately 100 members of the Council of Advanced Practitioners of the National Academy of Elder Law Attorneys and is a Charter Member of the Academy of Special Needs Planners.

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