Interview with Emma Heming Willis, mother, advocate, and co‑founder of Make Time Wellness

Dr. Thais Aliabadi and Mary Alice Haney spoke with Emma Heming Willis about a topic that too many of us carry privately until it becomes unavoidable: what happens when a partner’s brain changes and the life you knew morphs into something else. Emma is a mother, stepmother, wife, and advocate for women’s brain health. After Bruce Willis was diagnosed with frontotemporal dementia, Emma stepped into caregiving, then into advocacy and entrepreneurship. Her book, The Unexpected Journey, and her brand, Make Time Wellness, are practical outgrowths of the lessons she learned while trying to keep a family intact and her own health intact at the same time.

Table of Contents

• Why this conversation matters
• Conversation
• Final thoughts and next steps
• Where to learn more
• FAQ
• Closing resources

Why this conversation matters

Too often, brain disease is reduced to a single idea: memory loss. That narrow view misses how differently conditions can present and how deeply they affect relationships, identity, and the people who step into the role of caregiver. Emma’s story highlights lesser-known diagnoses like frontotemporal dementia and exposes a systemic problem: families are frequently left at a diagnostic moment with little guidance on what to do next.

Conversation

Tell us how your relationship with Bruce began. How did the two of you meet, and what was it like in the early years?

We met when I was in my early thirties and, like a lot of people in Los Angeles, it was at a gym. It was not love at first sight for either of us; we ran into each other occasionally, and life took its own course. He was humble, funny, and down to earth—everything you’d hope someone truly is behind a public persona.

We spent a lot of time on the phone getting to know each other. There’s a kind of old‑fashioned romance to that: long conversations that allow you to learn someone slowly. A turning point came when he invited me to join his family in Turks and Caicos. Seeing him with his daughters and as a family man made it click for me. We fell in love relatively quickly after that.

You’ve talked about blending two families. How did that work for you and your girls?

Merging families isn’t the horror story some people expect. We became a large blended family—five girls between us—and, honestly, we are very lucky. Everyone shows up for one another in their own way. It takes intention, patience, and communication, but it can be a real gift when it works.

When did you first notice that something was changing with Bruce?

The early signs were subtle and ambiguous. Bruce had a childhood stutter that resurfaced. Conversations that had previously been easy started to feel off. That ambiguity is part of what makes some brain diseases so difficult to spot. You can look back and find moments that, in hindsight, were early signals—but at the time they felt gray and hard to define.

Because these changes can be so indistinct, it often falls to partners or family members who spend the most time with the person to follow their instincts. I reached out to his doctor because something felt wrong. That gut instinct is powerful and deserves attention.

How did the diagnosis unfold? What did doctors tell you?

Bruce was diagnosed with frontotemporal dementia late in 2022. The appointment was a shock. We left with a diagnosis and very little else—no roadmap, few practical resources, and a sense that there were no treatments to stop what we were seeing. That moment was traumatic and isolating.

A common misconception is that dementia equals Alzheimer’s and, therefore, memory loss. Frontotemporal dementia, or FTD, often shows up differently because it affects the frontal and temporal lobes. It can change behavior, movement, or language. In Bruce’s case, the language center was heavily involved—primary progressive aphasia—which changed how he communicated.

Can you explain primary progressive aphasia and why it’s easy for people to miss?

Primary progressive aphasia (PPA) is a form of FTD that targets language and communication. Instead of the first obvious symptom being forgetfulness, someone might start misplacing words, repeating, or showing a return of childhood speech patterns like a stutter. Because these signs are not classical memory loss, they are often misdiagnosed or dismissed as stress, depression, bipolar disorder, or even a midlife crisis.

Complicating diagnosis further is a neurological condition called anosognosia. It means the person’s brain doesn’t allow them to recognize the changes. They are not being evasive. Their brain literally does not register the decline, which makes early recognition even more dependent on relatives and friends who notice changes in behavior or communication.

Were there treatment options or clinical trials available?

There is no cure for FTD at this time. There are a few clinical trials, but a major barrier is late diagnosis: by the time many people receive an FTD diagnosis, they are already well into the disease process, and that excludes them from trials designed for earlier stages. That is why getting diagnosed sooner matters—not only for planning and support, but also so people can enter clinical trials when possible.

After you received the diagnosis, what was the immediate next step?

The immediate next steps were chaotic. We had a diagnosis appointment that offered clarity but no practical guidance. A neurologist’s role is to diagnose, but families need more. We wanted tangible next steps: a list of specialists and services, caregiver resources, and guidance on building a care team. Instead, we were sent home and told to check back in a few months. That gap was painful and disorienting.

You built a caregiving team. How did you do it, and why was that important?

Building a care team was transformative. I brought in specialists—about 25 of them across different disciplines—and formal caregiving support. That network allowed me to step away from constantly managing logistics and return to the emotional role I wanted to have: Bruce’s wife. It also freed up time for me to write and to create resources for other caregivers.

The core truth we learned is that caregiving is not a solo mission. Waiting too long to ask for help is one of the biggest mistakes families make. By the time they reach out, their informal systems—friends, family routines, and ad hoc supports—can be exhausted. Building a formal support network early protects both the caregiver and the person living with dementia.

Caregiving is exhausting and often invisible. What did you discover about caregiver health?

We learned that caregiving is terrible for health if you do it alone. A neurologist pointed out to me that caregivers have elevated mortality risk—she cited a figure of 63 percent—because we routinely put everyone else’s needs above our own. That moment was a turning point. I realized that if I did not take care of my own body and mind, I would be unable to sustain this long, slow journey.

For caregivers, self‑care is not indulgence. It is necessary. Without it, we burn out, become ill, and the whole system fails—the person living with dementia and the family around them.

What practical steps did you take to protect your own health?

First, baseline medical care. Many caregivers skip annual checkups, mammograms, pap smears, or blood work. Start with your own doctor and get basic labs done. Know your numbers. If we aren’t healthy, we cannot care sustainably.

Second, set up formal caregiving support so you can leave the house for appointments, exercise, therapy, or just rest. That might mean hiring professional caregivers, tapping hospice or in‑home care services, or arranging rotating family support.

Third, routines that support brain health: prioritize sleep, move daily, eat nutritiously, and seek social connection. Mental stimulation and social interaction are as important as exercise. Small, consistent habits add up.

How do you counsel families who don’t have the resources or connections you had?

Start where you can. There are free and low‑cost resources: nonprofit organizations, local Alzheimer’s and dementia associations, community health services, and caregiver support groups. Ask a neurologist, social worker, or hospital case manager to point you toward local services. When you get a diagnosis, insist on having a care roadmap that includes practical next steps.

Family and friends want to help but often do not know how. The caregiver’s job is not to do it alone and not to shoulder the shame of asking for help. Make clear, small ways others can assist—drop off a meal, take a two‑hour shift, pick up kids, or sit with your loved one so you can go to a doctor’s appointment.

You wrote The Unexpected Journey. What motivated you to write it, and what do you hope readers gain?

The book came from a need to translate private trauma into public usefulness. After receiving a diagnosis and scouring for answers, we built a practical support system that worked for our family. Writing the book was a way to pass on that system, the experts we leaned on, and the emotional lessons we learned.

I wanted caregivers to have permission to care for themselves and to see concrete steps for creating a care team, finding specialists, and protecting their own health. Those actionable items—how to ask for help, who to call, what to prioritize—are what many families lack after a diagnosis appointment.

You’ve spoken about ambiguous loss and how love changes but does not disappear. Can you describe that experience?

Ambiguous loss is the long grief of someone who is physically present but mentally altered. We grieve repeatedly as the person we love shifts. It is not a single bereavement; it is a chronic, layered sorrow that requires compassion and redefinition of the relationship.

For us, love did not end—it changed shape. My role evolved into both partner and caregiver. That shift was painful, but with time and support, we learned new ways to connect. Meeting him where he is and adjusting expectations has been key. That does not erase grief, but it allows us to continue sharing life with dignity and intention.

You launched Make Time Wellness for women’s brain health. What gap were you trying to fill?

The motivation was personal. I experienced brain fog, forgetfulness, and a dismissal from a doctor who suggested stress or tiredness as the only explanation. I met a brain health specialist who introduced me to the concept of deliberate brain care. What I learned was simple, evidence‑based, and actionable: sleep, nutrition, movement, mental stimulation, social connection, and targeted supplementation.

The problem was adherence. The doctor put me on multiple vitamins several times a day. That routine is impossible for many busy women. We wanted something brain‑forward, effective, and simple to use—so we created Make Time Wellness. It is a single-scoop powder mixed into water designed to make daily brain care achievable for women juggling family and work.

What are the nonnegotiables of brain health you recommend to women?

Prioritize three pillars: sleep, movement, and nutrition. Those three have the biggest leverage. Good sleep is restorative for cognition, mood, and immune function. Regular movement increases circulation and supports brain health. Thoughtful nutrition—whole foods, a balance of protein, healthy fats, and fiber—fuels the brain.

Add social connection and mental stimulation. We thrive through relationships, and cognitive activities—learning, reading, conversation, puzzles, taking on new skills—build cognitive reserve that can protect against decline.

How do you define practical self‑care when caregiving consumes so much time?

We reframe self‑care from being an indulgence to being an essential maintenance plan. Make Time Wellness is named that way for a reason: instead of feeling guilty about a two‑hour spa day, choose small, meaningful practices you can commit to consistently. Ten minutes on the phone with a friend, watering the garden, a 20‑minute walk, or ten minutes of focused breathwork are examples that feed us from the inside.

The important part is making those actions nonnegotiable—schedule them and ask for help to protect that time.

How did the blended family help during this process?

A big, supportive family network matters. Everyone in our blended family has a unique relationship with Bruce, and that has been a strength. They show up in different ways: some spend quality time, others manage logistics, and some provide emotional support. When family members step into caregiving roles, it decreases the pressure on any single person and preserves the caregiver’s ability to care for themselves.

What would you say to someone who suspects something is wrong but keeps being told it’s stress or depression?

Trust your instincts. If something feels wrong, say so. Keep a journal of what you notice: changes in language, personality, sleep, or behavior. Share those observations with clinicians and insist on further evaluation if necessary. If a doctor dismisses you, seek a second opinion or ask for a referral to a neurologist or a brain health specialist. Early detection offers more options for support and, when appropriate, for clinical trial participation.

What practical checklist would you give a caregiver in the first month after diagnosis?

We’d urge caregivers to act on these steps immediately:

1. Get clear medical documentation: request written diagnostic results, imaging, and referrals. Ask the neurologist for a one‑page list of next steps and resources.
2. Build a care team: identify a social worker, a primary caregiver, in‑home care options, a speech therapist if language is affected, and a geriatric or dementia specialist.
3. Secure legal and financial basics: durable power of attorney, health care proxy, and an updated will or care plan. These conversations are hard but necessary.
4. Protect your health: schedule your own medical checkup and baseline labs, and create a plan for how you will get to appointments.
5. Create a simple daily routine: prioritize sleep, a short walk, one nourishing meal, and a social contact each day.
6. Ask for help and tell friends exactly what you need. People are more willing to help when there are specific asks.

What resources do you point people toward?

National and local dementia associations, caregiver support groups, and nonprofits focused on specific diseases are useful starting points. The Association for Frontotemporal Degeneration is a key resource for families dealing with FTD. Hilarity for Charity offers programs and support for families affected by Alzheimer’s and related diseases. Hospitals and university centers with memory clinics can often connect families to clinical trials and research programs.

How has this experience changed how you show up in the world?

Becoming a caregiver changed me at a cellular level. It rewired priorities and forced me to be more intentional about what I protect: sleep, health, and meaningful connections. It also pushed me toward advocacy. Writing the book and creating Make Time Wellness are ways to turn personal pain into collective utility—so the next family that faces this has clearer options.

Final thoughts and next steps

Brain disease is complex and often misunderstood. Different forms present in different ways, and early detection matters not only for care planning but also for research. Caregiving is a shared responsibility. Asking for help is essential, not shameful. Building a care team, protecting the caregiver’s health, and making small, sustainable habits around sleep, movement, nutrition, and social connection are high‑impact strategies.

Emma’s work is an invitation: talk more about brain health, support caregivers, and build systems that treat diagnosis appointments as the start of guided care instead of the end of clarity.

Where to learn more

• The Unexpected Journey by Emma Heming Willis
• Make Time Wellness — brain‑first daily support designed for busy women
• Association for Frontotemporal Degeneration
• Hilarity for Charity — programs and support for families

FAQs

What is frontotemporal dementia, and how is it different from Alzheimer’s?

Frontotemporal dementia affects the frontal and temporal lobes and often presents with changes in behavior, movement, or language rather than the early memory loss typical of Alzheimer’s. There are many types of dementia, and FTD is one of the more common forms for people under 60.

What is anosognosia, and why does it matter?

Anosognosia is a condition in which a person is unaware of their own neurological changes. It is not denial; it is a brain‑based lack of insight. This makes early detection dependent on family or friends who notice changes in behavior or communication.

How can caregivers protect their own health while caring for someone else?

Caregivers should prioritize baseline medical care, including annual visits and blood work, build a support team so they can take breaks, and maintain daily routines for sleep, movement, and nutrition. Asking for help early and using both formal and informal supports reduces burnout.

Are there treatments or clinical trials for FTD?

There is currently no cure for FTD, but clinical trials exist. Early diagnosis increases the chance of being eligible for trials. Families should ask neurologists and memory centers about ongoing research opportunities.

What practical first steps should someone take after receiving a dementia diagnosis?

Immediate priorities include getting clear medical documentation, setting up a care team, securing legal and financial directives, protecting the caregiver’s health with medical appointments, and creating a simple daily routine that includes sleep, movement, and social contact.

How can friends and family best support a caregiver?

Offer specific help: drive the person to appointments, prepare a meal, take care of the kids for a few hours, or sit with the loved one so the caregiver can rest. Small concrete offers are far more useful than a general “let me know.”

Closing resources

If you want to follow Emma’s work, she co‑founded Make Time Wellness to make daily brain support accessible and simple, and she gives back: a share of proceeds from Make Time Wellness supports families impacted by brain disease through charitable partnerships.

We are grateful to Emma for sharing practical strategies and for turning a painful personal journey into tools others can use. Her experience makes clear that awareness, early action, and shared support are the most important gifts we can give one another.

This article was created from the video Bruce Willis’s Diagnosis, Caregiver Burnout, & Brain Health Habits You Need w/ Emma Willis | SHE MD for Dr. Thais Aliabadi’s website.