On stage and screen, caregivers are in the spotlight. Will this spur change?

In 2021, Herb Caldwell stopped calling his mother. 

He worshiped JoeAnna. She once packed hundreds of lunches for hungry children and started a soup kitchen, fortifying her legacy. The community she served in Jacksonville, Illinois, called her “Mama Joe.” 

But Alzheimer’s made JoeAnna forgetful. 

Over the phone, she called Caldwell “Dilbo,” a nickname for his uncle. Crestfallen, Caldwell couldn’t bear hearing his mother get lost and confused. 

“She had no idea who I was,” he said. “I was so upset.” 

Such scenes of hardship are commonplace among the nation’s growing number of family caregivers. In 2020, the United States had roughly 53 million, an increase from 43.5 million in 2015. In the documentary, “My Mama Joe, Hope & Help,” Caldwell chronicles his family’s caregiving journey. The film is expected to debut on PBS in 2025.

• Actor Bradley Cooper, PBS plan documentary to illuminate lives of caregivers
• A road trip across the U.S. to connect with dementia caregivers

Directed by Caldwell, “My Mama Joe” paints a portrait of JoeAnna’s life of community service and the challenges of aging, health and dementia. Researchers forecast a spike in Alzheimer’s cases, especially among Black families such as Caldwell’s. 

His film is part of a recent wave of caregiving portrayals on stage and screen. A few notable examples include the Broadway play “Mary Jane,” and the films “American Fiction,” “Maestro,” and “The Eternal Memory,” all nominated for Academy Awards.   

The rise in representation can provide caregivers information, build community and illuminate caregiving as a universal part of life, said Lydia Storie, director of culture change at the national advocacy organization Caring Across Generations. Caregivers have been largely rendered invisible in mainstream culture, Storie said. 

“That kind of feeds into the fact that people are not accustomed to talking about [care] openly or really even thinking about it at all,” she said. “The representation itself becomes a roadmap of understanding.”

‘One of the biggest stressors on families’

The influx of plays, movies and television shows centering caregiving has grown because many of the people behind the camera were caregivers themselves, Storie said. 

“Once you find yourself in the role of caregiver, it’s a really powerful experience,” she said. “People are kind of working it out through their art, to some degree.” 

Certain artistic portrayals have elucidated major caregiving issues to the broader public.  

In the comedy-drama film, “American Fiction,” protagonist Thelonius “Monk” Ellison is a frustrated professor and writer. Monk becomes a caregiver to his mother Agnes, who has Alzheimer’s, after the unexpected death of his sister Lisa. The film follows Monk as he ventures into the absurdities of the publishing industry to pay for his mother’s long-term care. 

The long-term care plot struck Storie. The film contextualized the obstacles the Ellisons faced authentically. 

“Care is actually one of the biggest stressors on families,” she said. “It’s really expensive for families to be able to provide quality care.”

“Mary Jane,” by award-winning playwright Amy Herzog, has garnered critical praise. The titular character cares for her disabled son alone after her husband abandons them. Mary Jane’s boss fails to accommodate her caregiving needs. Mary Jane feels guilty after getting her apartment’s window guards to brighten her son’s mood when he gets sick. 

This depiction, Storie noted, accurately captures the nuances of disability care and its impact on daily life. “It did a fantastic job,” she said. 

The narrative short film “Take Me Home,” written, directed and produced by Liz Sargent, premiered at the Sundance Film Festival and was featured at a recent White House event. 

Based on Sargent’s family dynamics, the film follows the lives of two sisters navigating their relationship after their mother dies. Sargent’s sister Anna, who has a cognitive developmental disability, stars as the film’s lead. Caring Across Generations will help finance the feature adaptation of the film.

These stories provide more than entertainment or an escape. In partnership with the Norman Lear Center at the University of Southern California, Caring Across Generations conducted a study on the impact of a caregiving storyline in the megahit television show, “This is Us.”  

Researchers found the storyline encouraged viewers to share their care experiences on social media. After key episodes, the number of care-related posts increased on X (formerly known as Twitter). About half of online comments posted on Reddit praised the storyline.

“Those who viewed the entirety of the show were more likely to have an understanding, awareness, and empathy for anyone who has care responsibilities or needs,” Storie said. 

For the final season, Caring Across Generations launched an impact campaign in partnership with the team behind “This is Us.” The campaign helped shift people’s perspectives on care.  

“People actually went and had conversations in their own life about their care wishes and desires, which is a really important form of norm and behavior change,” Storie said.   

But Storie cautions against what she describes as pitfalls of representation. Burden-framing is one of them. 

“We have also heard from many caregivers that it feels inauthentic to frame or discuss care only as a burden,” Storie said. 

“We know many people find a lot of fulfillment, pride, joy, intimacy, all of these things within the care relationships that they have.” 

Another pitfall is a limited view of the care relationship, and the notion that care relationships only flow one way. Many older adults, disabled people and children are still actively contributing to their families and communities. 

In her role, Storie helps ensure artistic portrayals of care are multidimensional, which could disrupt the idea that care only diminishes quality of life and a sense of personal identity. 

“It’s just an aspect of someone’s life,” Storie said of caregiving. 

To address these potential pitfalls, Caring Across Generations released the care inclusion playbook, a resource for screenwriters on how to incorporate inclusive, care-related storylines. 

‘There clearly still is a lack of information’

Outside the Hollywood system, playwrights and filmmakers have crafted caregiving stories that act more explicitly as educational tools. 

Caldwell’s documentary is part of The Mama Joe Project, a multimedia initiative poised to raise awareness and educate dementia caregivers.

Once his mother received an Alzheimer’s diagnosis, Caldwell said his family felt ill-prepared and uninformed. The project hopes to fill those knowledge gaps. 

“There clearly still is a lack of information, which is why we wanted to do this,” Caldwell said. 

“We want to include a personal narrative with it. ‘Hey, this happened to us. And this is how you can move through it. This is how you should prepare for it.’ That’s part of the impetus behind doing this work.” 

In addition to outreach events and the forthcoming film, the project will include online learning modules featuring dementia care experts. They’ll provide information on early detection of cognitive decline, insurance benefits and health care providers, for example. Caldwell hopes the modules serve as an easy-to-use “cheat sheet.”

“When this hits your family, you don’t have the time or energy to go look at 4,000 websites. You need something that’s compact and concise,” he said.

In April, JoeAnna died in Houston. She was 80. 

“Unforgettable,” written by playwright Garrett Davis, is touring cities across the nation, with stops in Cleveland, Oakland, Atlanta and Baltimore. The play, which will stop in Detroit in September, is presented by the Alzheimer’s Association. 

Featuring a diverse cast of Black, Latino and white actors, the play focuses on caring for a loved one with an Alzheimer’s diagnosis, early warning signs of the disease, and the importance of clinical trial participation.. Black people are twice as likely to develop Alzheimer’s but remain underrepresented in clinical trials. 

Davis hopes his play raises awareness on a healthcare disparity that’s persisted for decades. 

“That cure may not work for us,” he said.

Davis culled from his own painful experience to write plays about Alzheimer’s.

After his grandmother received an Alzheimer’s diagnosis, Davis avoided her. At the time, he said he was immature. “I didn’t like to see my grandmother,” he said. “I didn’t return until the funeral.”

Then Davis started to examine the disease that took his grandmother away, resulting in his play, “Forget Me Not.” The creative process became a form of therapy. 

“Unforgettable” treads similar ground. 

“I’m not the only person who ran away or didn’t understand why their family was going through something,” Davis said, expressing remorse. 

“If I can take my experiences and put it in some type of production, so that people can learn from me and do something different, then that’s what it’s all about. This isn’t work. For me, it’s my life.”