New film, study, explore joys and struggles of family caregivers

Nearly half of U.S. states (48%) are bordering on a caregiving crisis, according to a recent study from the Columbia University Mailman School of Public Health. The study, sponsored by Otsuka America Pharmaceuticals, concluded that the real-world value of family caregivers' unpaid efforts is much higher than previously reported, due to a higher estimated number of caregivers and aligning caregiver tasks with average wages.

For actor Bradley Cooper, this statistic turned personal, when he put his career on hold to help care for his father who had terminal cancer. The invisible caregiving crisis in the U.S. is finally starting to get more coverage thanks to Cooper becoming executive producer of "Caregiving," a new documentary premiering tomorrow, June 24 on PBS. In the film, Cooper opens up about the highs and lows of caring for his father.

"When I was in the active action of caring, it was very fulfilling. It was the moments of solitude and quiet after where I felt scared and confused and frightened because of the role reversal, because of so many things, because of how surreal life became," he said following a screening of film excerpts at the United Nations on June 12. The discussion was moderated by ABC News' Deborah Roberts, who is also a caregiver.

f states are not prepared to address the long-term care needs of older people or their caregivers. Pending budget cuts to Medicaid and other safety net programs will only exacerbate this problem. Journalists can use the information and personal stories featured in this film to inform their reporting and help their audience better understand caregivers' crucial role - but also how important these programs and services are to the caregiving puzzle.

More on the study

Columbia researchers devised a new scorecard assessing the urgency of local caregiving needs, to help policymakers further advocate for caregiver benefits on behalf of their constituents. By classifying all 50 states and District of Columbia into four categories - critical, high risk, safe for now and well-supported - the scorecard can help policy makers and advocates make better decisions about where to allocate scarce resources.

Dementia care comprises nearly 39.7% of total caregiving valuation, according to the study. More people suffering from this condition increases the demand for caregiving, and strains states' capacity to meet this need, unless caregivers receive needed training and resources.

Journalists can check their state's rank in this survey, and ask local and state policymakers about support for caregivers in their communities. As we previously reported, looming Medicaid cuts will have a significant impact on caregiver support to help older adults to remain at home rather than being institutionalized.

A timely film

The producers of "Caregiving" hope viewers and policymakers will gain more insights into what caregiving entails - including for those caring for loved ones with disabilities. The film highlights the personal experiences of caregivers and the daily challenges and triumphs.

Actress Uzo Aduba ("Orange is the New Black", "The Residence"), who narrates the film, spoke of her own experiences when introducing the film at the U.N. screening.

"I didn't even realize until I started reading through the material and watching some of the stories and the advocacy work that I was in fact part of a community. Because the experience that I had felt, so isolated and so individual," she told an audience of dignitaries, caregivers, advocates and policymakers. "The significance of this film is about that invisible labor that people are experiencing around the country and around the world and how that connects us."

Caregivers require differing types and levels of support. At times, the burdens of caregiving can seem unbearable, regardless of resources. The "needs gap" for information may be greater for caregivers than it is for care recipients, the filmmakers stressed. "Caregiving" explores these issues and looks at caregiving support, including respite care, self-care, education and mental health.

"One of the crises here is this crisis of self-identification," said director and senior producer Chris Durrance. "Most people do the work but don't realize just how big a part of the caregiving puzzle they are. It's something that they feel they should be doing. Culturally, people don't want to talk about their role, whether at work or among friends," he said.

That reluctance may be because we live in a country that hasn't really invested in supporting caregivers in the way that we need, Ai-jen Poo, executive director of Caring Across Generations, said during the panel discussion at the U.N. screening. Caregivers are struggling with all that comes with the complications, with crisis management, finding the right doctor, figuring out if you're eligible for a program and then realizing in most cases you're not eligible for much, she said.

The bigger picture

There are also 5 million paid caregivers nationally in the U.S. as of 2023, according to PHI, a domestic worker advocacy organization. However, demand far outstrips the number of available workers, further exacerbating the caregiving crisis. Family caregivers often benefit from additional support, even if they don't always acknowledge the struggle, said Natalie Black, CEO of the home care company Comfort Keepers.

"Respite care is an essential support system - for both family caregivers and their loved ones, especially when Alzheimer's or other dementias are involved," she said in an email. "Caring for someone with memory loss or cognitive impairment can be emotionally and physically demanding, and without breaks, caregivers can quickly become overwhelmed."

Older adults who receive Medicare and Medicaid, the dual-eligibles, may qualify for low-cost in-home care, through a Medicaid-certified agency. The proposed 2026 budget may impact available programs and services in some states, and reporters can explore the impact of potential Medicaid cuts to in-home caregiving programs for seniors.

For families that pay for services out of pocket, in-home care can be expensive - upwards of $6,000 monthly for full-time care. However, most high-quality agencies will work within families' budgets to tailor a plan that addresses both financial and care needs, noted Black. "To anyone in this situation, I say: don't hesitate to seek help. You don't have to do it alone, and reaching out for support can make all the difference for both you and your loved one."

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