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You Are Not Alone: Stories of Love, Connection, and Hope in the Face of Dementia

If you're reading this, you may be facing one of life's most challenging journeys. Perhaps someone you love has been diagnosed with dementia. Perhaps you're watching them change in ways you never imagined. Perhaps you're feeling overwhelmed, isolated, or heartbroken.

You are not alone.

What follows are stories from families who have walked this path before you—families who chose to share their most difficult moments so that others might find comfort, guidance, and hope. These are the stories of beloved entertainers and their families: Bruce Willis and Emma Heming Willis, Glen Campbell and Kim Campbell, Tony Bennett and Susan Benedetto, and Robin Williams and Susan Schneider Williams. Though these names may be famous, their experiences as families facing dementia are remarkably universal.

In their courage to speak openly, these families have given us all a gift: the knowledge that even in the darkest moments, love endures, connection remains possible, and the journey, though painful, can be filled with meaning.

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The Moment Everything Changes

For Emma Heming Willis, the early signs were subtle. Her husband Bruce had always been warm and affectionate, but he began to seem "a little more quiet" in social settings. "When the family would get together, he would kind of just melt a little bit," she recalled. "He felt a little removed, very cold. Not like Bruce, who is very warm and affectionate."

She thought perhaps it was hearing loss from his years on action movie sets. She never imagined it was the beginning of frontotemporal dementia.

For Susan Schneider Williams, her husband Robin began exhibiting troubling symptoms—anxiety, paranoia, trouble walking, hallucinations. After seeing numerous doctors, he received a Parkinson's diagnosis. It seemed to explain some things, but not everything. Only after his death did they discover the true culprit: Lewy body dementia, what Susan would later call "the terrorist inside my husband's brain."

Kim Campbell watched her husband Glen, the legendary singer, begin to struggle with words and memories. Tony Bennett's wife Susan noticed him becoming less alert, though when music played, something miraculous would happen—he would return to himself completely.

If you've noticed changes in your loved one, if you've felt that gut-wrenching moment of knowing something is wrong, you understand what these families felt. That moment when your world shifts. When the person you've known begins to slip away, even as they remain physically present.

You are not alone in that fear. You are not alone in that heartbreak.

The Diagnosis: Relief and Devastation

Emma Heming Willis described hearing Bruce's frontotemporal dementia diagnosis: "I was so panicked, and I just remember hearing it and just not hearing anything else."

She and Bruce left the doctor's office with a diagnosis but nothing else. "We left with no hope, no direction," she said. "There was absolutely nothing that was handed to us after that diagnosis, and that was a very traumatic experience."

Watch Emma's powerful interview with Diane Sawyer:
"Emma & Bruce Willis: The Unexpected Journey" – Available on Disney+ and Hulu

For Susan Schneider Williams, the discovery of Robin's Lewy body dementia came too late—only after his autopsy. But finally having a name for what had haunted their lives brought a strange sense of relief. "When that was revealed, that was like essentially finding out the name of my husband's killer," she said. "That's when my own healing started to begin."

These families learned what many of you are learning now: a diagnosis can be both devastating and clarifying. It explains the inexplicable. It gives you something to fight against, even when there's no cure. It tells you that you're not imagining things, that your loved one isn't choosing these behaviors, that something real and biological is happening in their brain.

And then comes the question: What now?

Read the official family statement about Bruce Willis's diagnosis:
Willis Family Statement – Association for Frontotemporal Degeneration

What Remains: The Power of Connection

Here is what these families discovered, what they want you to know: even as dementia takes so much, something profound remains.

Music as Medicine

When Tony Bennett stood by the piano at age 95, struggling with Alzheimer's disease, unable to hold a conversation or remember where he was, something extraordinary happened. His pianist Lee Musiker would begin to play, and suddenly Tony Bennett—the legend, the master of song—would return.

"When I start playing, Tony is completely engaged," Musiker said. "This is a whole new performance and new phrases, new nuance. Nothing short of a miracle."

Anderson Cooper of 60 Minutes witnessed it firsthand. With no notes and no cue cards, Bennett sang an hour-long set from memory. His neurologist Dr. Gayatri Devi explained: "The important thing to remember about Alzheimer's is that people respond differently depending on their strengths. In Tony's case, it's his musical memory, his ability to be a performer. That is an innate and a hard-wired part of his brain."

Watch Tony Bennett's remarkable transformation with music:
60 Minutes: Tony Bennett's Musical Memory Triumphs Over Alzheimer's
Watch: Tony Bennett and Lady Gaga's Final Performances

Glen Campbell experienced the same phenomenon. Even as Alzheimer's disease progressed, even when he needed a teleprompter for the lyrics he'd sung for decades, he could still play perfect guitar solos. "You give him a cue," his doctor noted, "and he does a perfect guitar solo for five minutes."

Experience Glen Campbell's inspiring journey:
Watch "Glen Campbell: I'll Be Me" Documentary on Amazon Prime Video
Also available on iTunes, Google Play, and other streaming platforms

Learn more about Glen's story:
Mayo Clinic: Glen Campbell Documentary Shares Alzheimer's Journey

If your loved one has always loved music, don't stop playing it. If they sang in the church choir, play hymns. If they danced to big band music in their youth, put on Glenn Miller. Music can unlock doors that conversation cannot. It can bring back the person you love, even if only for a few minutes.

Presence Beyond Words

Bruce Willis's language is going. His primary progressive aphasia means he can no longer communicate the way he once did. But Emma is clear: "Our communication is different, but our connection is very much intact."

She describes how Bruce still recognizes her, still lights up when the family is together. "When we are with him, he lights up, right?" she told Diane Sawyer. "I know he does. You know, when we are with him… there are moments. Not days, but we get moments. It's his laugh, right? It's him. He's still in there."

Susan Benedetto says the same about Tony. "He recognizes me, thank goodness, his children. We are blessed in a lot of ways. He's very sweet."

Read more about Tony and Susan's journey:
AARP: Tony Bennett's Battle With Alzheimer's Disease – An intimate portrait of his final years

Lady Gaga, who performed with Tony Bennett even as his Alzheimer's progressed, learned to communicate differently with him. She'd ask simple questions: "Tony, would you like to sing 'Love for Sale?'" And he'd say, "Yeah." She discovered that even when he couldn't remember her name for weeks, even when she wasn't sure he knew who she was, when that music came on, "something happens to him. He knows exactly what he's doing."

Your loved one may not remember what day it is. They may not recall what they had for breakfast. But they know love. They feel your presence. They recognize the safety of your voice, even if they can't say your name.

The Caregiver's Journey: You Cannot Do This Alone

Emma Heming Willis tried to be everything for everyone. After Bruce's diagnosis, she worked around the clock to care for him, keep him safe, create a perfect environment. She stopped having playdates and sleepovers for their young daughters. She isolated not just herself, but her whole family.

"I didn't know if parents would feel comfortable leaving their child at our home," she explained. "Not only was I isolated, I isolated our whole family. You know, the girls were isolated too, and that was by design, I was doing that. It was a hard time. It was a really hard time."

It was Bruce's stepdaughter who finally spoke up, telling Emma she was worried about her. That's when Emma began to seek help. She learned from experts. She built a support system. She discovered something crucial: "Caregiving is not a solo mission."

Emma describes the old narrative she had subscribed to: "You show up for your spouse. You do the duty. You don't ask for help. If you do, you're a failure. You take it all on yourself. I'd really love to see that narrative change."

Bruce's neurologist told her something that changed everything: "You're burning your candle at both ends, and you need to understand that sometimes due to the stress of caregiving, the caregiver dies before the person that they are caring for."

That was Emma's wake-up call. With two young daughters, she couldn't afford to burn out completely.

Kim Campbell learned the same lesson. When Glen was diagnosed with Alzheimer's, they decided to go public and share their journey. "We just felt like Glen was doing really good and we just wanted to keep living our lives and celebrate being together," she said. "If you don't have anything to hide, you're not worried."

That openness created community. It brought support. It reminded them they weren't facing this alone.

If you are trying to care for your loved one all by yourself, please hear this: asking for help is not failure. It is wisdom. It is survival. It is the only way to sustain this journey.

Learn from Emma's caregiving journey:
AARP Interview: Emma Heming Willis on Her Caregiving Journey
Emma Heming Willis on Life After Bruce's Diagnosis

Building Your Support System

These families found help in different places:

  • Family: Emma credits Bruce's ex-wife Demi Moore and their adult daughters for being part of the care team. "I've been able to lean on them, as well, to be able to help me provide the best care for Bruce."
  • Experts: Emma sought out specialists in frontotemporal dementia, caregiving consultants, therapists, and neurologists who truly understood the disease.
  • Support groups: Emma encourages caregivers to "be in the room with other caregivers. Some are a few steps ahead of you and you can learn from them. You're able to share stories and lean on one another."
  • Professional caregivers: Eventually, Emma made the difficult decision to have Bruce live in a nearby home with professional 24-hour care. "It was one of the hardest decisions I've had to make so far," she said. "But I knew, first and foremost, Bruce would want that for our daughters."

This last decision—to move a loved one to specialized care—is often agonizing. But Emma describes Bruce's new home as "filled with love and warmth and care and laughter." Her daughters can have sleepovers again. They can be children. And Emma can be Bruce's wife and partner again, rather than only his exhausted caregiver.

The Children: Helping Them Understand

Emma Heming Willis didn't know how to talk to her daughters about their father's diagnosis. She reached out to a child psychologist who gave her crucial advice.

"You think that the best thing to do is continue to put these smoke and mirrors around your children," Emma said, "but in actuality it's really better to be able to communicate with them and be honest."

She told them "pretty quickly" about Bruce's frontotemporal dementia. That honesty created space for questions, for processing, for grief and love to coexist.

Tallulah Willis, Bruce's daughter from his first marriage, wrote movingly about her own journey understanding her father's condition. She described early signs she couldn't name, a "vague unresponsiveness" the family attributed to "Hollywood hearing loss." She remembered a painful moment at a wedding when she suddenly realized: "I would never get that moment, my dad speaking about me in adulthood at my wedding."

But she also wrote about the moments that remain. On Father's Day, even in the midst of grief, she wrote to her father: "I can still hold you and hug you and kiss your cheek and rub your head. I can tell you stories."

If you have children or grandchildren watching a loved one change, know this: children are resilient, but they need truth appropriate to their age. They need permission to grieve. They need to know it's okay to still love, still laugh, still spend time with someone who is changing. They need to know that the person with dementia is still their loved one, still deserving of dignity and affection.

Finding Meaning: Turning Pain Into Purpose

These families made a choice that has helped millions: they decided to speak publicly about their experiences.

Emma Heming Willis wrote a book, "The Unexpected Journey: Finding Strength, Hope and Yourself on the Caregiving Path." She started a podcast. She advocates for legislation to support dementia research and family caregivers. "I love and care for my husband so much," she said. "I want him to go into this next chapter of his life cared for and loved. But I think what has also helped me is the advocacy part of all this, being able to use my voice to help somebody else. That has been really comforting to me."

Connect with Emma's advocacy work:
Emma Heming Willis Official Website – Resources for caregivers
Emma's Make Time Podcast – Conversations with experts and caregivers

Susan Schneider Williams joined the board of the American Brain Foundation. She speaks at conferences. She worked with filmmakers on the documentary "Robin's Wish" so that other families might recognize Lewy body dementia earlier than Robin's doctors did. "I couldn't live with myself if I didn't tell this story," she said.

Watch Robin Williams' story and learn about Lewy Body Dementia:
"Robin's Wish" Documentary on Amazon Prime Video
Watch FREE on Tubi
Also available on Apple TV, Peacock, and other platforms

Read Susan's powerful essay:
CNN Interview: What Robin Williams' Widow Wants You to Know About Lewy Body Dementia

Glen Campbell and his family made their journey public through the documentary "Glen Campbell: I'll Be Me," which followed his 151-show farewell tour. Kim Campbell testified before Congress about the need for Alzheimer's research funding.

Tony Bennett's son Danny and wife Susan allowed cameras to film his final performances, knowing it would help others understand Alzheimer's and the power of music and love.

You may not have a public platform, but you can still find meaning. You can:

  • Share your story with other caregivers in support groups
  • Volunteer with dementia organizations once you're able
  • Participate in research studies or clinical trials
  • Simply be present for your loved one, showing them daily that they still matter
  • Document your journey for your family—the lessons learned, the moments of grace

Emma Heming Willis said something profound: "Dementia is a family disease. It really is." But she's also discovered that "the level of sadness, and grief, and anger, and the resentment… that is one common thread that we all share, and I think that there is something so beautiful in that" connection with others.

The Hard Days: You're Allowed to Feel Everything

These families don't sugarcoat the difficulty. Emma Heming Willis writes honestly about grief during the holidays, about "cursing Bruce's name" while wrestling with Christmas lights—"not because I'm mad at him — never that — but because I miss the way he once led the holiday charge."

She acknowledges that grief "can catch you off guard in the middle of a room full of people, or in the quiet moment when everyone else has gone to bed."

Susan Schneider Williams described Robin's symptoms as "chemical warfare in his brain." She watched him struggle with paranoia and delusions, watched him lose connection with reality. "My best friend was sinking," she said.

Lady Gaga, speaking about performing with Tony Bennett, said: "It's emotional. It's hard to watch somebody change."

These are not stories of perfect grace and endless patience. These are stories of real people facing devastating loss while their loved ones are still alive—what experts call "ambiguous loss."

You are allowed to be angry. You are allowed to grieve. You are allowed to feel frustrated, exhausted, resentful, and heartbroken. These feelings don't make you a bad caregiver. They make you human.

Emma learned from her therapist something she shares with other caregivers: people without the experience don't get a vote. "The opinions are so loud, and they're so noisy," she says. "But if they don't have the experience of this, they don't get a say."

What Your Loved One Would Want

Emma Heming Willis says Bruce would not want her consumed by sadness. "If he knew that I was spending my time sad and crying and not participating in life, not giving the life that he would want our two young daughters to have, he would have been like, 'What in the lord are you doing?'"

She believes Bruce would say: "Do whatever you need to do to find connection, to heal, to laugh."

Glen Campbell's family talks about his wish to help people be "less afraid." Even in the documentary showing his decline, even in his final song "I'm Not Gonna Miss You," there was a gift—the gift of honesty, of showing that life and love continue even in the face of loss.

Your loved one, in their truest self, would not want you to sacrifice your health, your other relationships, your ability to find moments of joy. They would want you to live as fully as possible while caring for them as best you can.

The Moments That Make It Worthwhile

Tony Bennett's wife Susan describes those moments when Bruce's personality shines through. Not days, but moments. "It's his laugh, right? It's him."

Lady Gaga remembers the performance when Tony said her name for the first time in months. "That's the first time that Tony said my name in a long time," she recalled, tears in her eyes.

At Tony's Radio City Music Hall performance, Susan says, "once he saw the audience, he became himself. It was like a light switch."

Emma describes how Bruce still lights up when his family is together. How there's still connection, still recognition, still love.

These moments may become rarer. They may become briefer. But they remain precious beyond measure.

A smile of recognition. A moment of clarity. The way they relax when you hold their hand. The twinkle in their eye when they hear their favorite song. These moments tell you: the person you love is still there, still experiencing life, still capable of connection.

Every moment of presence, every gesture of love, every time you show up—it matters. It registers. It means something.

The Research Continues: There Is Hope

These families have poured their grief into action. The money raised through Glen Campbell's documentary and advocacy work has funded Alzheimer's research. Susan Schneider Williams helped establish a $3 million research grant for finding biomarkers for Lewy body dementia. Emma Heming Willis advocates for earlier diagnosis and better support for families with frontotemporal dementia.

Every year, researchers learn more. Clinical trials are underway. As Emma says, "That is the whole motivation for me to raise awareness about this disease, because we want families, we want people to be able to be diagnosed earlier, when they can participate in these trials."

The diagnosis your loved one received today may not have a cure, but the research being done now may save someone else's loved one in the future. And earlier diagnosis means more time for families to adapt, to make plans, to create memories intentionally.

Practical Wisdom from These Families

As you navigate your own journey, here is what these families learned:

  • Trust your instincts: Emma knew something was wrong before doctors could diagnose it. "I just knew in my gut that something else was going on," she said. "It's important for us that we know it's OK, and we should feel it's empowering to go to our loved one's doctor and say, 'Something is not right, and I really need you to listen to me.'"
  • Seek specialists: Dementia is complex. Find neurologists who specialize in your loved one's specific type of dementia. Susan Schneider Williams encourages families to "surround your loved one with a team of doctors and therapists who know about Lewy body dementia, Parkinson's disease, and Alzheimer's disease."
  • Create a list of how people can help: Emma suggests making "a list of the small, practical things that could help them get through the day so they can hand it to people who offer to help." People want to help but don't know how. Tell them: "Bring dinner on Tuesdays," "Take the kids to the park on Saturday mornings," "Sit with Dad while I go to my appointment."
  • Use what works: If music brings your loved one back, play music. If looking at old photographs creates connection, look at photographs. If walks in nature calm them, take walks. There's no one right way to care for someone with dementia.
  • Adjust your expectations: Emma says she's learned "we have a way of communicating with him, which is just a different, a different way." Let go of how things used to be and learn the new language of connection.
  • Take care of your brain health too: Emma started Make Time Wellness, focused on brain health supplements, because she realized caregivers need to protect their own cognitive health. Sleep, nutrition, stress management—these aren't luxuries. They're necessities.

A Letter to You

If you're reading this as a caregiver, as a family member, as someone who loves a person with dementia, please know:

You are doing something extraordinary. You are showing up for someone who may not remember you showed up. You are caring for someone who may not be able to thank you. You are loving someone as they change into someone both familiar and unfamiliar.

This is some of the hardest work in the world. It will break your heart repeatedly. It will exhaust you. It will test you in ways you never imagined.

And it matters profoundly.

Every time you speak gently to someone who is confused. Every time you put on their favorite music. Every time you hold their hand. Every time you tell them about their grandchildren even if they can't remember their names. Every time you show them a photo of their younger self and tell them, "This is you. Look how beautiful you were. You still are."

All of it matters.

You are not alone in this journey. Millions of families are walking this path alongside you. Some are a few steps ahead, some are a few steps behind, but all of us understand the unique grief of losing someone slowly, of loving someone who is both present and absent.

Lady Gaga said something beautiful about Tony Bennett: "He really pushed through something to give the world the gift of knowing that things can change and you can still be magnificent."

Your loved one is still magnificent. Even as they change. Even as they forget. Even as they need help with things they once did effortlessly.

And so are you.

The families in these stories want you to know: there will be moments of grace. There will be unexpected joys. There will be laughter alongside the tears. There will be connections that transcend words.

Bruce Willis's family gathered for his 70th birthday and posted photos on social media, celebrating him exactly as he is now. Glen Campbell's family describes the love that surrounded him through every stage of his journey. Tony Bennett's family treasures those final performances, the way music unlocked the man they loved. Robin Williams's widow found healing in understanding his disease and helping others.

Your story will be your own. Your journey will have its own shape. But you can draw strength from knowing that others have walked through this darkness and found meaning, found connection, found ways to honor their loved ones while also taking care of themselves.

Resources and Support

The families featured here have all emphasized the importance of connecting with others and accessing expert support. Here are the resources they recommend:

Watch the Full Documentaries and Interviews

Bruce Willis & Emma Heming Willis (Frontotemporal Dementia):

Tony Bennett & Susan Benedetto (Alzheimer's Disease):

Glen Campbell & Kim Campbell (Alzheimer's Disease):

Robin Williams & Susan Schneider Williams (Lewy Body Dementia):

National Dementia Organizations

Association for Frontotemporal Degeneration (AFTD):

Lewy Body Dementia Association:

  • Education, support, and physician directories for LBD
  • Comprehensive information on symptoms and diagnosis
  • Connects families with LBD specialists

Alzheimer's Association:

  • 24/7 Helpline for immediate support
  • Local support groups nationwide
  • Extensive caregiver resources and education
  • Clinical trial information

American Brain Foundation:

  • Funds critical research into dementia and brain diseases
  • Lewy Body Dementia Research Fund (supported by Susan Schneider Williams)
  • Information on participating in clinical trials

Dementia UK – Admiral Nurse Helpline:

  • Specialist dementia nurses available seven days a week
  • Expert guidance for caregivers

Additional Learning Resources

Understanding Different Types of Dementia:

  • Frontotemporal Dementia (FTD) – affects personality, behavior, and language before memory
  • Alzheimer's Disease – most common form, primarily affects memory initially
  • Lewy Body Dementia (LBD) – affects movement, cognition, mood, and causes visual hallucinations
  • Vascular Dementia – caused by reduced blood flow to the brain

Books by the Families:

  • "The Unexpected Journey: Finding Strength, Hope and Yourself on the Caregiving Path" by Emma Heming Willis (September 2025)

Key Articles and Essays:

Emma Heming Willis has created extensive resources at emmahemingwillis.com, including her Make Time Podcast featuring conversations with experts and caregivers.

Find Local Support

Don't navigate this alone. Both in-person and online support groups connect you with others who truly understand. These groups offer:

  • Emotional support from people walking the same path
  • Practical advice from caregivers further along in the journey
  • A safe space to express difficult emotions
  • Information about local resources and services
  • Connection and community when you feel most isolated

Contact the organizations listed above to find support groups in your area or online communities you can join from home.

In Closing: The Love That Remains

Before you go, we encourage you to watch these families' stories:

These documentaries and interviews are more than entertainment—they're companions for your journey. Watching them can help you:

  • Feel less alone in your experience
  • Learn practical caregiving strategies
  • Understand what your loved one may be experiencing
  • Find hope in seeing how others have navigated this path
  • Recognize that moments of connection and joy are still possible

Start with these:

Emma Heming Willis was asked by Diane Sawyer what love means to her now, after everything they've been through.

Her answer was simple: "Love is beautiful. It's grand. It's unconditional. I'm so lucky to feel the love."

Even in the midst of loss, she feels lucky to love and be loved.

That is the ultimate message from these families: dementia changes everything, but it cannot destroy love. It cannot erase the years you've shared. It cannot diminish the value of the person who is ill. It cannot prevent you from finding moments of connection, joy, and meaning.

Susan Schneider Williams said that when she finally learned about Robin's Lewy body dementia, "that's when my own healing started to begin." Understanding brought peace, even in the midst of grief.

Kim Campbell said that going public with Glen's Alzheimer's journey was about "just keep living our lives and celebrate being together."

Tony Bennett's family created moments of magic—performances that no one thought possible, proof that the human spirit and the power of music can transcend the ravages of disease.

Bruce Willis's family continues to gather, to love, to support one another, to advocate for better care and more research.

These families want you to know: you can do this. Not perfectly. Not without pain. But you can do it.

You can love someone through their changes. You can find help. You can build community. You can honor both your grief and your joy. You can take care of yourself while taking care of them. You can find meaning in the journey, even when it's not the journey you would have chosen.

And you are not alone.

Millions of us walk beside you. We understand the unique heartbreak of ambiguous loss. We know what it's like to grieve someone who is still here. We know the exhaustion, the isolation, the moments of despair.

We also know the unexpected moments of grace. The power of a familiar song. The comfort of a hand held. The gift of a smile. The privilege of being present for someone we love, exactly as they are, in whatever capacity they can receive our love.

This is sacred work you're doing. Hard, heartbreaking, sacred work.

Thank you for doing it.

Thank you for showing up.

Thank you for loving someone through the unimaginable.

You are not alone. You are not failing. You are not doing it wrong.

You are doing the best anyone can do: loving someone, one day at a time, one moment at a time, through whatever changes come.

And that is more than enough.

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