People living with Alzheimer's ‒ and their caregivers ‒ need more than hope | Opinion

In June 2021, I was sitting in a small outside café in Stowe, Vermont. My husband and I were chatting with a lovely elderly Peruvian man sitting nearby. His name was Pedro. He had a character-rich face, a warm smile and a mischievous twinkle in his eye.

I’m a casting director in Los Angeles, perpetually on the lookout for interesting faces, and my husband and I love meeting people and striking up conversations with strangers. Just as I was about to quiz Pedro more on his life, I got a phone call from a recruiter at the University of Southern California's Keck medical center about a new drug trial for Alzheimer's disease.

My husband, Charlie Hess, was living with early onset Alzheimer’s, and though you might not notice right away, the challenges were real. Living with Alzheimer’s doesn’t need to be a story of pure tragedy. It’s a terrible disease ‒ a disease that should be much further along in developing treatments ‒ but because Alzheimer’s is more invisible than, say, a person battling cancer, the disease has largely been ignored. 

This accelerated trial for the drug known as donanemab held the promise of slowing the progression of Alzheimer’s by clearing the amyloid plaque that many view as a key driver of the disease. It’s a more complex trajectory ‒ Alzheimer’s is a multifactorial disease ‒ but clearing amyloid might be akin to prescribing statins for people with high cholesterol to help keep their arteries from clogging and causing a heart attack.

The USC recruiter insisted this medication donanemab was much better than Aduhelm, a drug I was well aware of that got provisional accelerated approval later that summer in 2021 but was mired in controversies from the get-go. The Food and Drug Administration's expert outside advisers voted not to approve it for many reasons, and Aduhelm finally was removed from the market by Biogen in 2024, as the manufacturer turned its focus toward another Alzheimer's medication that showed more promise.

But the jury is still out whether these drugs, which cost up to $32,000 a year, and lengthy infusion therapy will be the answer. There are significant risks for Alzheimer's patients, and issues of cost and access to consider.

I was at a loss that June day four years ago. The infusion, given once every six weeks, might slow progression. And I thought, while Charlie was still talking to Pedro, that in a year Charlie might lose conversations like this. The recruiter pressed me: Charlie was on their short list, and if we didn't decide in 24 hours, it would be gone. My stomach tightened. My mind kept thinking, “If not now, when?”

Families living with Alzheimer's are at a tipping point

We said goodbye to Pedro. I looked Charlie in the eye and told him we had gotten a “golden ticket” ‒ a spot in a trial for a new drug ‒ and we had to decide immediately. My husband was clear in his thinking and calm in his delivery.

“Why would we rush back to LA for a drug that is only a pile of promises?” Charlie said. “I feel way better here in nature, slowing down. We have great doctors. If this drug proves to be the one, I’m sure you’ll find a way to get me back in. The only thing I know is that nobody knows what to do with this, and we just have to keep living.”

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Charlie sometimes struggles for words, but then suddenly finds clarity and speaks directly. That June in 2021, he did just that, and I think he was right.

In February 2025, in a New York Times opinion column, journalist Charles Piller raised alarm about fraud and controversy in Alzheimer’s research. His book, "Doctored: Fraud, Arrogance, and Tragedy in the Quest to Cure Alzheimer’s," sent shock waves across the Alzheimer’s community.

It’s a messy story, and I do not think all researchers are cooking their studies. Even so, drug companies certainly have a huge financial incentive, and we ‒ caregivers and people living with Alzheimer’s ‒ are at a tipping point.

What Alzheimer's looks like from the inside

There may be more drugs approved in the future that are worth pursuing for some, but the risks are high, the costs are staggering, and the resources we put toward selling hope could undermine health care for everyone. Hope itself is perhaps the most powerful drug of all, but it won’t cure Alzheimer’s. 

We need a cure, but we also need to rethink the narrative. It’s time we fund caregiver supports, and find a way to help people live with dignity and compassion alongside their disease. It’s time we recognized that Alzheimer’s doesn’t just affect a person ‒ it profoundly impacts the whole family.

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My own experience with Alzheimer’s and this ongoing journey alongside Charlie profoundly influenced me to make "Walk With Me," a documentary that traces our life together and the quiet, intimate struggles of caregiving.

The film is a deeply personal view into what Alzheimer’s looks like from the inside ‒ not just for the person living with it, but also for the family that bears it alongside them. 

"Walk With Me" will be screening on Tuesday, July 29, in Toronto in the same week that more than 10,000 people will be gathered there at the Alzheimer’s Association International Conference to discuss new research, care options and more.

I will be at the Toronto conference with my hopes up. But what I fear most is that what the drug companies will be selling is not a cure yet but rather another hope.

While hope is a powerful drug, we are due for a reality check. We need to learn to live better by strengthening caregiver supports ‒ this vast, unpaid workforce that underpins much of health care today.

My hope is that my film sparks a conversation not just about the search for a cure but also about the necessity to care ‒ honoring the people we love and the caregivers who make their journeys more human and compassionate.

According to Statistics Canada, 4 in 10 Canadians ages 15 or older provide unpaid care, amounting to more than $97 billion in annual economic value. In the United States, 1 in 5 Americans provide unpaid care, valued at over $470 billion a year.

Let’s stop selling hope and start funding better care for all.

Heidi Levitt is a casting director in Los Angeles. Her documentary "Walk With Me" will be screening on July 29 at the TIFF Lightbox theater in Toronto. It is playing film festivals all over the United States and internationally with the goal to find distribution to play the film widely theatrically and online. Please check the website www.walkwithmedoc.com for updates.