When Emma Heming Willis received her husband Bruce’s frontotemporal dementia diagnosis, the doctor handed her a pamphlet and told her to come back in a few months.
“I walked out of that office feeling completely alone,” she later told the news. That moment, when a family’s life splits into a “before” and “after,” is one that nearly 63 million Americans now share, according to on the magnitude of .
In my years of research on the frontlines of caregiving, and being a and cancer caregiver myself since my mid-30s, I’ve learned that most caregivers receive absolutely no warning, no roadmap and even no training for the challenging new role they are about to play. Families improvise their own safety net, stitching together care coverage one day at a time.
That’s why I think Emma’s new book, goes beyond just a celebrity memoir, and is actually something much more useful. Her book is a working manual for caregivers thrust into roles they never prepared for.
She’s also not alone. Last year, PBS released “Caregiving,” a documentary produced by Bradley Cooper, which centers the daily lives of American caregivers and traces their struggles into the broader economics of aging and disability.
For readers at the start of their own caregiving journey, here is what Emma’s experience, combined with my years of research on caregiving and the lived experience of families I talk to daily, suggests you should know now, not later.
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Build Your Care Support Team Before You Need It
The strongest predictor of caregiver survival is whether help is in place before a crisis hits. Identify, on paper, who can drive to appointments, who can cover an afternoon, who can manage bills and who simply listens. Make the asks early on, before urgent help is needed.
A recent showed that the most often-reported sacrifices that caregivers make include giving up leisure time and hobbies as well as losing time with other friends and family members. These sacrifices aren’t trivial. In fact, they’re often a precursor to and eventually clinical depression, which is reported in approximately 40% of caregivers.
Building your care support team ahead of time can help alleviate that burnout and prepare those around you for the support you’ll need.
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Caregivers Need Their Own Care Team
Roughly report fair or poor health, and .
A neurologist warned Emma that caregivers can die before the people they care for. Treat your own primary care, sleep and mental health as non-negotiable. Schedule the way you would schedule essential medical appointments.
Learn the Medical Tasks You Will Be Expected to Perform
More than half of family caregivers do clinical work — things such as medications, and injections — yet only 11% receive training. Ask the discharging hospital, the neurology clinic or your local Area Agency on Aging for hands-on instruction.
The federal (1-800-677-1116) connects you to free local resources.
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Understand What Medicare Does Not Cover
This topic blindsides nearly every family that I talk to. , which is the help with bathing, dressing and supervision that defines . The average amount caregivers spend out of pocket is about , but many families I talk to spend far more than that.
The same U.S. News caregiving survey highlighted that 14% of caregivers reported resigning from a job due to their caregiving responsibilities. Lost wages and declined promotions in addition to the costs of caregiving will quickly add up. To prepare, speak with an early about planning, and .
Long-term care costs and coverage
| Care or Support Type | Medicare Coverage | Out-of-Pocket Costs for Caregivers |
|---|---|---|
| Long-term custodial care (bathing, dressing, supervision) | Excluded | Average $7,200 annually, often much higher |
| Financial planning | Not provided | Requires consultation with elder-law attorney for Medicaid/Veterans benefits |
| Skilled nursing care (short-term) | Covered (under specific conditions) | Minimal/varies by plan |
| Respite care | Limited coverage | Available through local agencies |
Moving a Loved One Into Specialized Care Is Not Abandonment
When Emma moved Bruce to a home equipped for FTD, the online critics arrived quickly, but her reasoning was sound. The move protected her daughters’ childhoods and it gave Bruce round-the-clock expertise that no spouse can provide. Families weighing
should evaluate staff training in dementia behaviors, staff-to-resident ratios and the structure of daily activities, not just the amenities.
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Document the Legal Paperwork While Your Loved One Can Still Participate
, , HIPAA authorizations and a financial inventory are far easier to complete early. Waiting often means guardianship court, which is expensive, slow and emotionally costly.
Use the New Tools Designed for You
Resources have expanded sharply in the last two years:
— Health and Human Services and the Administration for Community Living has launched a , which will reward innovators using AI to help with the challenges of caregiving and develop future resources.
— The National Institutes for Health is funding caregiver training tools like , AI-powered caregiver coaching that answers questions like “how do I calm Mom during ” in real-time and helps upskill caregivers.
— For those who need help now, the (1-800-272-3900) is free and staffed with expert advisors.
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Expect Grief That Does Not Follow Rules
Anticipatory — mourning the loss of someone who is still alive — is a documented clinical phenomenon in dementia care. It coexists with love, anger, relief and exhaustion. Therapists who specialize in caregiver grief are increasingly available through .
I think the Willis family’s story is unusual only in its visibility. The diagnosis, the isolation, the improvised safety net and the slow recalibration of family life are all the same chapters playing out in living rooms across America tonight. I commend Emma for doing a socially impactful act by sharing her story in detail, so that the rest of us can plan ahead.
is a healthcare researcher focused on caregiving for the aging population. He is an NIH-funded Principal Investigator on the project that he started at Johns Hopkins. Neal is the CEO of , a social enterprise providing affordable eldercare, and serves on North Carolina’s Steering Committee on Aging.
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