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Together in Care: Enhancing Cooperation Between Family Caregivers and Direct Care Workers

November 16, 2023

In her 26 years as a direct care worker in the Bronx, Zulma Torres has come to realize the most important component of a strong caregiving relationship: “It’s all about trust,” Torres says—trust with her client, and equally as important, trust with her client’s family members, who often act as unpaid caregivers.

Without that trust, communication can break down, she noted. “I wish that the family and friends or caregivers would understand what we do and give us the space so we could be able to do our job,” she said.

What would help, she said, is more training and resources for unpaid family caregivers on how to work with direct care workers. “I think if family members had a little bit of that, it could help them,” Torres said. “That would be a great thing, because it’s also going to release the stress on the worker, and the family.”

Family caregivers like Minnesota resident Debbi Simmons Harris, whose son, Josh, has complex medical needs and disabilities, also would like to see more of a focus on how to strengthen care team relationships, she said. At times, have dismissed her expertise, despite her extensive experience caring for her son. “Our boys have grown up in a home where direct care workers have had to become an operational and emotional support system to help keep Josh well,” Simmons Harris said. “It’s been worth all of the effort, but I wish we had been given more resources at the beginning of our caregiving journey on how to work with the direct care workers that have become an invaluable part of our lives.”

Torres and Simmons Harris are far from the only caregivers who wish there was more support that focused on the relationships between direct care workers and family caregivers, who often work hand-in-hand to provide care to a client and loved one, yet too often are still thought of as two distinct groups, with different needs. Even as caregiving and the needs of both direct care workers and family caregivers have received increasing attention in recent years, there’s been little holistic focus on their intertwined challenges and needs, said PHI’s President and CEO Jodi M. Sturgeon.

“Historically, there hasn’t been a lot of recognition given to the fact that these individuals work closely together, even though they have separate roles,” Sturgeon said. “There’s significant opportunity to strengthen this relationship and enhance their collective impact.”

A new initiative by PHI and the National Alliance for Caregiving (NAC) seeks to do just that—to tackle this often unaddressed issue, PHI and NAC are launching a groundbreaking, multi-year initiative that will, for the first time, systematically examine and research the working relationship and shared needs of direct care workers and family caregivers, with the ultimate goal of identifying policy solutions that will strengthen and improve care for all.

“Together, direct care workers and family caregivers form the common thread that weaves through the fabric of our long-term care system. Yet there’s still a lack of coordination and synchronicity,” said Sturgeon.

As NAC President Jason Resendez put it, “The direct care workforce crisis and the crisis in the unpaid family caregiving space are two sides of the same coin—how our country underinvests in caregiving writ large.” According to a 2020 report from NAC and the AARP, not only are there more caregivers now than ever before, but one-third of unpaid family caregivers report having paid help, often in the form of a direct care worker. “There’s lots of opportunity to explore the interconnected nature between direct and indirect and unpaid caregiving,” Resendez said. “How do we strengthen that relationship? Because that’s what it’s going to take to one, put in place an adequate infrastructure for caregiving, and two, to make caregiving more sustainable from both sides.” He added, “If unpaid family caregivers are better supported and have more resources and have stronger access to home- and community-based supports and have the time and flexibility they need, then the work of the direct care worker is easier, and vice versa. And we can know that conceptually, but there’s very little policy focus on understanding what that relationship looks like. And so we’re excited about helping to start to frame it out that way, and start to grow the tent of folks who are thinking about this, from this interconnected perspective.”

PHI and NAC started by prioritizing four policy areas.

The first is identifying policies and practices to better integrate both direct care workers and family caregivers into a care team. How can training for direct care workers and family caregivers be designed to enhance dialogue and understanding between them?” said Sturgeon. “And what opportunities are there to improve their care for the recipient?”

NAC’s Resendez is also focused on training opportunities. “One of our big mottos here at NAC is that just because caregiving is unpaid, doesn’t mean it’s not highly skilled,” he said. “How are family caregivers trained to be a part of a care team, and can direct care workers be part of that training, and vice versa? We feel like there’s opportunity to tap into training—mutual training, coordinated training—that can benefit both the direct care worker and the unpaid family caregiver.”

The second policy priority is funding and developing matching service registries that better connect home care consumers to paid support—and vice versa. “One of the questions we get most often is, ‘If I need in-home care support, professional care support, what are my options?’” Resendez noted. “We want to help family caregivers navigate what’s available.”

The third area is expanding access to and engagement in consumer direction programs.

“It’s about expanding both the funding for consumer direction, but also eligibility and uptake, to increase the number of people who are able to access these programs,” said Sturgeon.

Resendez noted that during the COVID-19 pandemic, many states expanded their consumer direction programs, or other programs that provide direct support to unpaid family caregivers, which has raised questions that have yet to be addressed via policy. “Are they an unpaid caregiver? A direct care worker? And if they are considered a paid caregiver, then do they qualify for other benefits that are designed for unpaid family caregivers?” Resendez said. “There’s this whole gray area that’s emerging from a policy perspective around the definition of caregiver, that I think needs to be adequately explored. We’re looking at taking that on.”

And the fourth area is funding new research and demonstration projects related to the direct care worker-family caregiver relationship. Given how little research currently exists, said Sturgeon, “there might be other issue areas that we’re not even thinking about.”

Sturgeon states that both PHI and NAC prioritize examining these issues with a focus on equity, acknowledging that workers of color, women, and immigrants are disproportionately affected by insufficient support and the sometimes challenging dynamics between family caregivers and direct care workers. They aim to identify and understand the specific policy issues related to equity within this context.

NAC’s Resendez hopes this initiative will begin to break down the false distinctions between family caregivers and direct care workers. “The more that we silo and segment the caregiving community, the less we’re able to do collectively and the less power we have collectively to affect change,” he said. “My hope is that we come out of this project with a set of priorities and an agenda that we could rally our field around. We can create those bridges around a common set of goals and priorities and policy opportunities.”

The ultimate goal of this initiative, said Sturgeon, is “for direct care workers and family caregivers to work effectively together so that they’re maximizing the quality of the care provided to the people they are supporting.” She added, “It’s about creating a system in which we’re increasingly seeing them as connected to each other.”

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Contributing Authors
Esther Wang

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