When her husband was diagnosed with early onset Alzheimer's, she started filming

Heidi Levitt and her husband Charlie Hess have collaborated on WALK WITH ME, a tender, love-filled documentary covering the first four years of their learning to live as caregiver and patient.

After casting director Heidi Levitt and her design director husband Charlie Hess learned that Charlie had early onset Alzheimer’s, they did something highly unusual. Instead of battening down the hatches, retreating from the world, and making their lives smaller, simpler, and less public, they decided, with their children’s permission and participation, to turn a camera on both themselves and their family to document the painful, beautiful, and everyday realities of this new normal.

The riveting WALK WITH ME, their resulting documentary, was culled from four years of this collaboration, and it is an incredibly moving, often funny, eye-opening, and groundbreaking film from this first time director, who was lucky enough to get documentary filmmaker Alex Gibney on board as her creative partner. The film shows—better than any film on the topic of Alzheimer’s I’ve ever seen—what it’s like, day by day, to live well, open-hearted, and with both conviction and realistic expectations of this incurable, brain-stealing scourge, both from the perspective of the patient and the caregiver. (One Stanford study found that 40% of caregivers, who mentally and physically suffer from the strain of caregiving, die before the Alzheimer’s patients for whom they provide care.)

Here below, for example, is a scene Heidi has allowed me to share before the film’s next screening at the Palm Springs International Film Festival this coming weekend (January 11 & 12, 2025.) The scene is simple yet moving: she must learn to shave Charlie’s face, as he can no longer manage to shave himself. The family portrait that emerges from each of these simple yet complex scenes, over and over again, is not only the deep love between these two particular humans at their most vulnerable moment of crisis, but also the compromises and sacrifices all of us make, every day, when we choose to love. In that way, it becomes not only a fascinating glimpse into the realities of early onset Alzheimer’s but also a treatise into the very nature of love itself. What do we owe those whom we love? And how do we care for them with grace and devotion without simultaneously losing ourselves?

I was fortunate enough to catch a screening of WALK WITH ME last fall at the Hamptons International Film Festival, thanks to my partner and his wife’s friends, who invited the two of us to see it with them. As many readers here already know, my partner’s wife was diagnosed with early onset Alzheimer’s back in 2016. So for the past two plus years, I’ve had a front row seat both to the ravages of early onset Alzheimer’s as well as to the challenges of caregiving, none of which I’ve ever seen adequately or accurately portrayed in Hollywood films.

Take this scene from The Notebook, which I recently rewatched, shocked by how absurd and patently wrong and improbable it was. First I burst out laughing. Then I started yelling at the screen. “No way! Not in a million years!”

I know a lot of people really love this film. But no one with Alzheimer’s suddenly “wakes up” from it and becomes lucid enough to ask when she’ll suddenly “forget” her memories again. Yes, sure, people living with Alzheimer’s have moments of greater or lesser lucidity, but do they have a full five minutes of reverting back to a totally normal brain again while understanding this before retreating back into the dementia darkness? No. No way. And it’s a disservice to those who deal with actual dementia, day to day, to suggest otherwise.

Even a recent show I finished watching and really loved, Shrinking, seemed to be on the verge of normalizing the realities of Alzheimer’s in the following scene (season 2, episode 3), but then these few wooden lines of dialogue became the only discordant, inconsistent notes in an otherwise wonderful, funny, and poignant melody. Worse, the show—spoiler alert!—conveniently killed off the husband with dementia before giving the audience another scene with him in it or any time to adjust to the intricacies of Harrison Ford dating a woman who was still married to a man with dementia.

That’s why I believe WALK WITH ME is such a critical film, especially right now as we are finally being forced to come to terms with the absurdities and horrors of our healthcare system. Alzheimer’s continues to explode, globally, unabated. Some countries have created built-in caregiving and institutional systems to deal with this burden. We have none. Today, 7 million Americans are living with Alzheimer’s. By 2050, that number is expected to climb to a whopping 13 million. Each of those 13 million will eventually require round-the-clock care, including toileting, dressing, and feeding. And because families like Heidi’s normally retreat and grow less visible with an Alzheimer’s diagnosis, the realities of the disease and the love, mental fortitude, and sweat equity required to care for someone with dementia have become hidden as well.

Heidi even framed it this way for Charlie: participating in this film with her would be his daily work. As critical as any work he’d ever done in his art director, pre-Alzheimer’s past, and maybe even more critical, as it would provide others with a rare window into the daily realities, for both him and his wife, of living with a diagnosis of dementia.

The film is not yet available in theaters or for streaming, but I can’t imagine, after the next few film festivals, it won’t be. And when it is, you can rest assured I will let you know how and where to screen it.

In the meantime, please enjoy this interview I did with Heidi over Zoom in the wake of having seen it.