The Tamsen Show: Emma Heming Willis on Bruce Willis, Caregiving, and the Diagnosis She Never Saw Coming

Host: Tamsen Fadal
Guest: Emma Heming Willis
Release Date: November 12, 2025

Episode Overview

In this powerful and deeply personal episode, Tamsen Fadal sits down with Emma Heming Willis—model, entrepreneur, caregiver, and wife of Bruce Willis. Emma opens up about Bruce’s journey with frontotemporal dementia (FTD), her own transformation into a full-time care partner, and the often-untold hardships and lessons of caregiving. Emma shares insights from her new book, The Unexpected: Finding Strength, Hope, and Yourself on the Caregiving Path, and offers candid advice for families navigating similar diagnoses. Their conversation sheds light on the importance of support for caregivers, the realities of rare cognitive diseases, and building resilience and community when life takes an unexpected turn.

Key Discussion Points & Insights

1. Emma & Bruce: The Love Story and Family Foundation

[03:22–08:03]

• Emma recalls meeting Bruce at a private gym in LA, their low-key beginnings, and a gradual, unexpected romantic connection.
  • “I just thought, like, what a lovely man. Just very humble, Always asking questions about me, just, you know, wanting to know more, but never pushy.” (Emma, 04:16)
• The importance of seeing Bruce as a devoted father: “Seeing Bruce as a father, I was like, God, like, what a great dad, you know, to his three girls. And that really stood out to me.” (Emma, 07:42)
• Their blended family dynamic and the beauty of co-parenting with Bruce’s extended family.

2. Recognizing, Diagnosing, and Understanding FTD

[08:03–12:55]

• “FTD whispers. It doesn’t scream.” Emma discusses the subtle, gradual changes—Bruce’s stutter returning, off-kilter communication, and the ‘gray’ area of suspicion before diagnosis.
• The long, complicated road to diagnosis: average of three years, frequent initial misdiagnosis (depression, bipolar, “midlife crisis”).
  • “By the time you get to that diagnosis, your person is usually very sort of advanced in their disease.” (Emma, 10:09)
• Emma’s first diagnosis was aphasia (2022), later identified as primary progressive aphasia, a variant of FTD.
• The shocking lack of support post-diagnosis: “We left with no hope, no roadmap, no support, just to check back in in a couple of months because there is no treatment and there is no cure.” (Emma, 12:17)

3. The Unseen Risks and Realities of Caregiving

[15:36–17:11]

• Importance of support for caregivers: “You’re thrusted into this with no previous knowledge,” and the needs vary widely between families.
• Emma’s drive to collect resources, talk to experts, and create a guide for others.
• The caregiving crisis: Most caregivers lack time, knowledge, or access to proper resources.

4. Going Public with Bruce’s Diagnosis: Community and Stigma

[17:11–19:59]

• Emma’s initial fear and isolation vs. her ultimate decision to share Bruce’s diagnosis publicly.
  • “I realized that once we landed on this diagnosis… there could be a really, maybe, like, beautiful opportunity to talk about this diagnosis and help somebody else… I didn’t want our two daughters to think that that’s what they needed to do. You know, I said, you know, we’re not going to be… shameful about this. We’re going to talk about it, and we are going to be loud about it.” (Emma, 18:27)
• The importance of changing the narrative and removing stigma from dementia—especially young-onset cases.

5. Raising Awareness and Early Diagnosis

[19:59–22:21]

• Young-onset dementia is more common than people realize, with rising numbers.
• Public awareness linked to Bruce’s story helps families recognize symptoms sooner: “Because you guys came out and talked about FTD…I went through that checklist…now we’re getting ready to receive a diagnosis.” (Emma, 21:20)
• Early diagnosis enables participation in clinical trials—often impossible if diagnosed late.

6. Asking for and Accepting Help: Permission for Caregivers

[23:15–26:21]

• Emma admits to initially subscribing to the “do it all yourself” mentality:
  • “I’m a woman. This is my husband. This is what you do for your spouse. You know, I’m gonna be a caregiver. I’ve got this covered.” (Emma, 23:37)
• The pivotal moment: Bruce’s neurologist delivers “permission” to bring in formal help.
• Tamsen and Emma agree: the book is a permission slip for caregivers to ask for and accept help.
• “Caregiving is not a solo mission. We need to ask for help to know that we’re not a failure if we do…” (Emma, 24:30)

7. Practicals: Support Systems and Accepting Help

[26:21–28:44]

• The problem with saying “Let me know if you need anything”—be actionable, have a list, and say yes to small tasks.
• “There’s nothing too small to do—whether it’s a prescription or it’s groceries and things that we might think are ‘oh, that’s not enough.’ Those things really matter.” (Tamsen, 27:57 & Emma, 28:06)

8. Research, Expert Insights, and Self-Care

[28:44–31:28]

• Emma interviewed over two dozen experts for her book.
• Practical tips: Music benefits both the person with dementia AND the caregiver.
• Research shows caregivers who look after themselves improve outcomes for those in their care.
• The dire consequences of caregiver neglect:
  • “It was Bruce’s neurologist who told me about these statistics of caregivers dying before their loved ones. It’s like 30% of caregivers die before their loved ones.” (Emma, 29:55)

9. Building a Support Network and Community

[34:05–35:51]

• Emma is grateful for the caregiving community’s openness and peer support: “When caregivers share their stories, what we learn from each other is magical and very helpful.”
• She encourages others: “You’re not alone. There is actually support out there.” (Emma, 36:01)

10. Practical Advice for Early-Stage Caregivers

[36:01–37:14]

• Leave the doctor’s office with real resources; don’t accept isolation.
• A roadmap or single point of contact/resource (like AFTD) at diagnosis is invaluable.
• There is no one-size-fits-all approach to dementia’s progression.

11. Communication, Joy, and Resilience Amid Decline

[37:57–39:56]

• Communicating with Bruce takes new forms: “We communicate with him in our own special way that works for him, that works for us. It looks different from what the norm would be, but we’re not dealing with anything normal.”
• Emma advocates for countering the narrative that dementia is only negative.
  • “There is still so much beauty in [our life]. There is joy. We have laughter. There are things Bruce does that’s funny, and it’s not all bad.” (Emma, 39:15)

12. Expert Tips for Dementia Care

[40:33–41:57]

• From dementia care specialist Teepa Snow:
  • Avoid wearing black (appears as a “floating head”).
  • Remove black doormats (look like holes).
  • When talking, stand slightly sideways, use clear gestures instead of too many words.

13. Bruce’s Legacy and Advocacy

[41:57–44:40]

• Emma would be “okay” if FTD became known as the Bruce Willis disease if it meant more awareness, research, and support. (“If this FTD was to be called the Bruce Willis disease, because it would help with funding… I would be okay with that… and I think Bruce would, too.”)
• The Willis blended family as a model for support, love, and unity amid hardship.

14. Emma’s Hopes for Her Daughters and Other Caregivers

[45:28–46:18]

• Role modeling advocacy, compassion, and resilience: “I would hope they’ll see that, and that will filter through to them… These kids are very compassionate, very kind… They are walking through life with a little bit of a different lens.”

Notable Quotes & Memorable Moments

• “FTD whispers. It doesn’t scream.” (Emma, 08:25)
• “We left [the doctor’s office] with no hope, no roadmap, no support… it was really traumatic.” (Emma, 12:15)
• “Caregiving is not a solo mission… we need to really look to friends, family. It’s not just like a personal issue. It’s like a societal one.” (Emma, 24:30)
• “[Caregivers] aren’t making their own medical appointments because they don’t have the time or support at home… 40% of caregivers don’t get their own care.” (Emma, 28:44)
• “There is still so much beauty in [our life]… There is joy. We have laughter.” (Emma, 39:15)
• “If FTD was to be called the Bruce Willis disease [and] it would help with funding, research… I would be okay with that. And I think that Bruce would, too, if he knew it would help the next person to feel seen.” (Emma, 42:17)

Important Timestamps

• 03:22–08:03: Emma & Bruce’s love story & blended family
• 08:03–12:55: Recognizing symptoms, path to FTD diagnosis, initial lack of support
• 15:36–17:11: The invisible burdens of caregiving
• 17:11–19:59: Deciding to go public: battling stigma and building community
• 21:20: Real stories of families helped by Emma’s advocacy
• 23:15–26:21: The critical importance of asking for and accepting help as a caregiver
• 28:44–31:28: Research-backed practices: self-care, music, and health impacts on caregivers
• 34:05–35:51: Building caregiver community and mutual support
• 37:57–39:56: Finding joy and humor even in decline; combatting negative stigma
• 40:33–41:57: Practical expert tips for communicating and caring for someone with dementia
• 41:57: Bruce’s legacy and hopes for impact on awareness and advocacy

Summary & Takeaway

Emma’s journey with Bruce is both a warning and a beacon of hope: it shows how isolating and frightening a rare dementia diagnosis can be, and how advocacy, community, and self-compassion can make all the difference. She underscores that caregivers are at real risk and deserve permission to care for themselves, and she spotlights the rising prevalence of young-onset dementia.

Emma’s practical wisdom, hard-earned from both heartbreak and hope, makes this episode invaluable listening for anyone facing a caregiver role—or anyone who knows someone who is. Her call for actionable support, systemic change, and empathy leaves listeners with not only a roadmap, but a sense that they, too, are not alone.

For resources mentioned in the episode, visit the Association for Frontotemporal Degeneration (AFTD) and consult Emma’s new book, The Unexpected, for guidance and support.