“My Mama Joe: Hope & Help” puts Spotlight on Alzheimer’s, Caregiving and Health Disparities – Herb Weiss

The documentary looks at the life of JoeAnna “Mama Joe” Caldwell, a community leader whose achievements involved setting up the Faith Social Services Center, guiding vulnerable young people, and campaigning for health equity before she was diagnosed with early-onset Alzheimer’s disease at the age of 60.

“This sweet songbird is my mother, Joanna. You can call her Mama Joe. She is one of nearly seven million people living with Alzheimer’s in America,” says Caldwell, introducing his mother in the documentary.

Caldwell describes his film project as “a divine assignment, referring to it as a “heart project.”  A friend contributed the seed funding to help get the project started.  Without funding, he was able to start his docu-project because he owned video and musical production equipment.

“The filming took seven months to complete with the help of volunteers. Funding ultimately came in after the film was finished,” he said. He estimated that a standard production company would have easily spent an extra half a million dollars to make a film of this type.

The documentary is mainly told from the point of view of Caldwell, who is an administrator at Logan University in Chesterfield, Missouri, and includes interviews with 24 of Mama Joe’s family members and friends about the care they provided. Through their accounts, it becomes clear what daily life was like for Mama Joe due to her memory loss and the strong effect this had on those who looked after her.

Thirty-seven medical and health care professionals, advocates, and policy experts offered informed commentary on Alzheimer’s disease, caregiving, and health disparities, says Caldwell.

According to Caldwell, researchers from “colleges and universities throughout the country also contributed expert voices grounded in scholarly research and evidence. Practitioners were interviewed, he says, “ensuring that this film not only reflects theoretical knowledge but real-world hands-on experience from people actively working in the aging field.”

Finally, Caldwell interviewed  specialists to address practical, often confusing aspects of caregiving that the audience needed to understand – such as navigating insurance systems. Caldwell’s background as a Sociologist came in handy, balancing personal stories with expert commentary. “We wanted to tell our personal story, but we also wanted to help educate others,” he said, explaining that the importance of the documentary’s narrative structure was to be educational, backed by research and data.

According to Caldwell, the documentary first aired on WSIU PBS on February 5, 2025, after which the individual local PBS stations arranged for the film to be shown to their local audiences. At the time of writing, it had already been shown at about 100 locations throughout the country as part of an educational screening tour.

The documentary debuted on WSIU PBS on Feb. 5, 2025, although local PBS stations independently scheduled the film for their regional audiences, Caldwell says. At press time, this documentary has already been shown at some 100 locations across the country as part of an educational screening tour.

In August, screenings took place in Oak Bluffs on Martha’s Vineyard, Massachusetts, Newport, and Providence, Rhode Island. “We’re talking about doing a standalone screening in Boston, possibly before the end of the year,” says Caldwell.

Rather than simply watching the film, audience members could “ask questions about topics” that were covered.  A panel of experts allowed people to get clarification on complex issues discussed in the documentary, noted Caldwell.

“People left feeling really inspired actually,” observed Caldwell, noting that they felt better connected to information and local social networks.

Mama Joe’s Legacy of Community Service

Who was Mama Joe?

“She loved people. She loved her community. Not your typical pastor. She was radical with prayer and praise,” remembers Caldwell. Those words capture a woman whose death represented a profound loss not only to her large family and friends but also to the community she served.

The story of Mama Joe, as told in the documentary through interviews with her family and friends, highlights her work in community health advocacy, her role as a caregiver, and finally the difficulties she experienced due to her illness from Alzheimer’s disease.

Mama Joe was the fifth of ten children and was brought up in a poor area of Jacksonville, Illinois; her father died of tuberculosis when she was still a child, and she suffered from hunger, family instability, and sexual abuse.

She married Paul Caldwell in 1965 and had four children — Paula, Joy, Kristi, and Herb. Her family would grow through adoption and the informal embracing of others as her own: Barbara, Andre, Bryan, Antonio, Maurice, Latisha, and Ronald.

She was described as a beacon, fearless, a savior, a healer of sexual abuse survivors, and a mother to “a million and one people.”

Her community service began with providing weekend and evening meals to volunteers. She later worked at Big Brothers Big Sisters as a volunteer and caseworker, served multiple terms on the local school board, and ran job-skills training, food assistance programs, and a clothing closet.

Driven by the hardships and tragedies of her childhood, Mama Joe developed a deep empathy for children, people living in poverty, and others who were vulnerable. That commitment led her to found the Faith Social Services Center, a nonprofit organization often referred to as “the soup kitchen,” which also offered recreational leagues, after-school programs, and music production.

As a pastor, Mama Joe took her ministry beyond the walls of a church, showing up in fatigues, jumpsuits, or clerical attire at sick bays, rehabilitation centers, and even townships near Johannesburg, South Africa.

In the documentary, Caldwell recounts his mother’s decision to serve as a minister in a South African church rather than meet Nelson Mandela.

“You can’t talk about my mother and not mention her faith because it was her faith that compelled her to love and serve others without regard to their race, sex, religious belief, income level, or any other factor,” he says.

According to Caldwell, his mother was honored by mayors, governors, and even the White House as the 944th “Point of Light.” Smiling, he recalls that she famously hugged President George H.W. Bush and First Lady Barbara Bush rather than offering a formal handshake.

During her 80 years, Mama Joe fought for the voiceless, gave support to young people who were in legal difficulties, and helped survivors of abuse. Unfortunately, Alzheimer’s disease appearing early in life eventually obliged her to stop the community work which had been such a major part of her life.

Coming to Terms with Alzheimer’s

Before being diagnosed with Alzheimer’s disease, Mama Joe’s family began noticing memory lapses and episodes of disorientation. Following her diagnosis, her large extended family would spend the next two decades helping to care for her.

Over the years, they learned firsthand that caregiving requires strong support systems — not only to maintain the quality of life of the person receiving care but also to prevent caregiver exhaustion and burnout.

Daughter Joy Oliver remembers a visit to a neurologist. “He ran all the tests, did the official test…we got the results, and he did confirm that it was, excuse me, early-onset Alzheimer’s,” she said.

As happens in many families, much of the primary caregiving responsibility fell to Oliver. “I knew it was no question. We would serve her. We would do whatever we had to do to make sure she stayed healthy and that she enjoyed her life, however long that was,” she says, describing her caregiving journey.

“For me, the hardest part was not just the fact that the burden was primarily just on my family and me, but to me the hardest weight was the responsibility,” remembers Oliver.

Oliver also recognizes the stresses of caregiving and the importance of respite and self-care. “Because it’s easy to slip into depression. It’s easy to totally ignore yourself because you have to take care of yourself first,” she said.

During her interview, Angelita Howard, Ed.D., MBA, of the Meharry School of Global Health, reinforces the importance of Black caregivers taking care of their own physical and emotional health. “There is a stigma in Black communities of color about mental health and about going to counseling and therapy,” she noted, stressing the importance of reaching out for help.

Taking care of Mama Joe involved multiple generations, including her grandchildren. Her grandson Jonah Oliver describes how he coped with the stress of caregiving. “With the stress and just dealing with my feelings, swimming has just been really therapeutic,” he says.

Grandson Noah Oliver also describes how caregiving affected his schooling.  “I went through a small depression at this time. I wasn’t submitting assignments, lying about stuff…And in my head I was justifying it. I was like I got to take care of my people. I’ll be OK. I can do that stuff later. And it didn’t get done later,” he admitted.

These family accounts make one of the documentary’s most important points: Alzheimer’s disease does not just affect the person diagnosed. Its impact can ripple through an entire family and across generations.

Alzheimer’s and Health Disparities

Mama Joe’s situation also leads to several questions about Alzheimer’s disease, racial disparities in health care, and whether families have sufficient support when they become caregivers. These questions are examined throughout the documentary.

“Black people are approximately two to three times more likely to develop Alzheimer’s disease than their white counterparts,” says Erin R. Hascup, Ph.D., executive director of the Dale and Deborah Smith Center for Alzheimer’s Research and Treatment.

Scholar and activist Okey Enyia, Dr.P.H., points to systemic factors contributing to those disparities.  “A fundamental reason why there are stark disparities and stark inequities is because of structural racism and the various ways in which it manifests across the healthcare system,” he says.

The documentary also points to a lack of resources and education in communities of color, along with geographic and transportation barriers that can make obtaining diagnosis, treatment, and support services more difficult.

Community-based interventions and culturally relevant approaches — including caregiver support groups, churches serving as trusted hubs for information and memory-care programs — may offer promising ways to address these disparities. Increasing participation by diverse communities in Alzheimer’s research is also essential to developing treatments that work effectively across populations.

Caldwell and his siblings also came face to face with the complexities of insurance, Medicare, and a medical system that was not always well-equipped to support families dealing with dementia.

As Mama Joe’s dementia progressed, complications from medication, multiple strokes, and her increasing disabilities forced her family to become increasingly assertive advocates for her care.

Mama Joe died as a result of the operation, and her family and friends held a cheerful “homegoing” service to honor her legacy and the span of her service. One of her relatives spoke about the grief caused, the loss of motivation, and the great effect of her departure.

Documentary Deeply Moves RI Aging Advocates

As Annie Murphy, Senior Program Manager with the Alzheimer’s Association Rhode Island Chapter, points out, this documentary presents a genuine account of the experiences of family members, friends, and the wider community as they support a person with Alzheimer’s disease or another type of dementia.

“As Murphy pointed out, caregiving often imposes an emotional, financial, and at times a spiritual strain on the people who look after their loved ones. With the viewpoint of a son coming from a large Black American family, she stated that the PBS film gave us the hope that community, faith, love, and endurance can indeed make a real difference in the life of a person who has dementia.”

She said, “Documentaries which aim to raise awareness—such as the Mama Joe Project—are important in increasing the impact that this disease has on our communities. They show the need for greater cooperation between state and federal services, community members, friends, family, and faith communities when supporting those affected.”

Markeisha J. Miner, JD, Vice President and Chief Diversity Officer at the University of Rhode Island, stated that “The Mama Joe Project is a must-watch documentary for anyone who is going through ‘the long goodbye’ with a loved one who has been diagnosed with Alzheimer’s or dementia” and added that “it is a beautiful reflection of her life and legacy because it keeps her dignity and humanity at the center throughout”.

She also stated that the film effectively combines Mama Joe’s own journey with appropriate and culturally sensitive input from scholars and care professionals. In the end, the project enables communities to rely on one another, to ask the right questions, and to find the proper support.

“Watching My Mama Joe was a moving experience,” Carol Anne Costa, executive director of the Senior Agenda Coalition of Rhode Island (SACRI), said, the organization having teamed up with filmmaker Caldwell to show the documentary in the Ocean State.

As Costa put it, he has created a powerful and moving portrayal that pays respect to both his mother and to the millions of families experiencing the Alzheimer’s and caregiving journey.

She observed that the documentary includes the voices of relatives, doctors, and researchers, offering a variety of viewpoints on aging, dementia, and caregiving.

As Costa pointed out, the real worth of the film lies in providing a platform for the people who live within this reality and those who study it. She also said that combining art with real-life experience is an effective way to help audiences learn about and empathize with this struggle.

In conclusion, George Andoscia, Program Manager of the Alzheimer’s Disease and Related Disorders Program, provides his assessment: “The My Mama Joe Hope & Help documentary admirably portrays the experiences of a person who has dementia and of the family members who become carers. Not only does the account of Mama Joe and her family, the interviews with subject matter experts, and the resources offered in this documentary make it a deeply personal presentation, but they also give it a highly educational character.”

A Final Note…

The interviews woven throughout Caldwell’s documentary provide a powerful case study of community health advocacy, the challenges of family caregiving, and the continuing need to address racial disparities in health care.

At its core, My Mama Joe: Hope & Help shows what Alzheimer’s disease and caregiving are really like. The book demonstrates the real effect that a dementia diagnosis has on a family, emphasizing the change in responsibilities, the increasing number of younger people taking on caregiving roles, and the difficulty involved in dealing with complicated healthcare and insurance systems.

The documentary also has the potential to increase awareness of Alzheimer’s and other dementias and reduce the stigma surrounding mental health counseling and seeking assistance in communities of color.

It brings the topic of care directly to the attention of policymakers: There is a need for support on the part of families who are looking after relatives with Alzheimer’s disease.  The nation’s aging policy agenda must include efforts to improve access to culturally appropriate dementia services, strengthen support for caregivers, increase the involvement of underrepresented communities in Alzheimer’s research, and address existing health disparities.

Mama Joe spent much of her life advocating for people whose voices were often overlooked.  Through this documentary, her family has made certain that her story — and the lessons it offers about Alzheimer’s disease, caregiving, and service to others — will never be forgotten.

To watch Caldwell’s documentary, go to My Mama Joe: Hope & Help | PBS.

To read more articles by Herb Weiss, go to:  https://2×8.ea2.myftpupload.com/herb-weiss/

Herb Weiss, LRI, 12, is a Pawtucket-based writer who has covered aging, healthcare, and medical issues for more than 45 years. To purchase his books, Taking Charge: Collected Stories on Aging Boldly and its two sequels, visit herbweiss.com.