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Caregiving NOW Blog

Teaming Up with Caregivers

July 7, 2022

by Lucy Andersen, OCN, BSN

In the second webinar of the inaugural Caregiving NOW series, Julian Harris, MD, MBA, recounted a recent experience with the caregiver of a person with diabetes, advanced kidney disease, and an amputation. Although the patient was on 16 medications, the caregiver “knew every single medication, she knew which condition it was for, she knew the doses, she knew the times of day. And it was just extraordinarily impressive.”

Dr. Harris was inspired to appreciate and support caregivers as he watched his grandfather care for his grandmother, a retired schoolteacher and community leader who developed Alzheimer’s disease. In a wide-ranging conversation with Mary D. Naylor, PhD, RN, FAAN, director of the NewCourtland Center, Dr. Harris highlighted opportunities to “sit side by side” with caregivers to help them navigate an increasingly complex and fragmented health care system. He drew on his experience as CEO of ConcertoCare, which provides multidisciplinary in-home care and support to older adults with complex care needs, as well as his previous roles at various health systems, Cigna Health, Google Ventures, the federal Office of Management and Budget, and Massachusetts Medicaid.

Dr. Harris proposed a holistic approach that sees caregivers as assets and leverages their expertise as key partners in patient care. Both paid and unpaid caregivers can help clinicians manage chronic conditions more effectively, if they are integrated into the broader care team. To optimize that role, caregivers need help navigating across primary care, behavioral health, long term services, and personal care, which mostly operate as separate “silos” of care. Dr. Harris described the value of a “quarterback”—someone designated to coordinate care across these sectors, something he was able to implement in Massachusetts for people dually eligible for Medicaid and Medicare. Quarterbacks can improve the patient’s quality of life and independence, and reduce the considerable burden and strain on caregivers as well.

A recent systematic review and meta-analysis provides evidence that integrating caregivers can improve patient outcomes. The study identified caregiver engagement as a key feature of interventions that reduce rehospitalizations among chronically ill adults transitioning from hospital to home. Dr. Harris noted that strategies that help caregivers navigate the complexity of patient care, including arranging specialists, durable medical equipment, and personal care services, may also pay dividends in terms of potentially reducing the need for expensive post-acute stays in skilled nursing facilities.

While the Massachusetts One Care model and experimental value-based plans integrating caregivers hold promise, they will not immediately shift the caregiving landscape. Dr. Harris and Dr. Naylor discussed the need for practical solutions, or low hanging fruit, to increase the ability of caregivers to access existing resources through their insurance plan or communities. This includes respite care, available as a supplemental benefit through some Medicare Advantage plans. Increasingly, employers and commercial insurers are recognizing the burdens and very real costs of caregiving among their employees. Dr. Naylor noted that about 60% of caregivers also have full-time jobs, with significant impacts on caregiver workplace productivity and health care costs. In response, many employers now offer Employee Assistance Programs, which may include preferred rates for part-time caregiving services, mental health support, wellness or coaching benefits, and educational resources.

These conversations about caregiving come at a critical moment, amidst a current and looming national shortage of paid caregivers. Dr. Harris noted that by 2030 we will have a shortage of 150,000 direct care workers. In keeping with his practical solutions, Dr. Harris suggested improving caregiver access to technologies, such as telehealth and remote monitoring, that can increase their efficiency, and providing a more attractive career path for direct care workers. On a broader policy level, Dr. Harris called out the potential for immigration policies to increase the caregiving workforce in the United States.

Looking forward, Dr. Naylor and Dr. Harris discussed the need for better data on caregiver financial strain, the caregiver’s personal health, and access to care coordination resources. Equally important is the need to test specific interventions and technologies that can improve care coordination and lessen caregiving burden. By helping caregivers navigate the complexity of our fragmented health care system, we can leverage their expertise and gain valuable insights to improve patient care.

It’s clear from these conversations in Caregiving NOW that improving the caregiving landscape will take a multi-faceted effort from employers, insurers, clinicians, and communities, as well as larger-scale policy changes. Be sure to sign up for the next conversation on September 21, 2022, featuring Dr. Fayron Epps of Emory University. Dr. Epps is the principal investigator of the Faith Village Research Lab, founder of the Alter Program—a nurse-led dementia-friendly congregation program, and creator of the CaREgiving While BlackTM online education course.


Seeing and Supporting Family Caregivers

June 15, 2022

by Ellen Munsterman, MSN, APRN, AGCNS-BC

In a webinar kicking off Penn Nursing’s new Caregiving NOW Initiative, Heather Young, PhD, RN recounted her own experiences as caregiver to her late father. “In his last seven years he saw over a dozen physicians, had five primary care providers, six surgeries, and over a dozen ED visits and hospitalizations. And only two people ever engaged me as his caregiver in a meaningful way: his geriatric psychiatrist and his funeral director.”

This all-too-common experience reflects the relative invisibility of the caregiver in our clinical care and health policy, something the new initiative is determined to change. Caregiving NOW will identify and test ways to enhance the well-being of all caregivers. In its first year, the initiative will host conversations with leading experts, review the literature, and engage with caregivers and communities. It is sponsored by the NewCourtland Center and led by Mary D. Naylor, PhD, RN, FAAN.

The kickoff session featured moderator, Melissa O’Connor, PhD, MBA, RN, Professor of Nursing at Villanova, in a wide-ranging conversation with Susan Reinhard, PhD, RN, Senior Vice President of AARP and director of the AARP Public Policy Institute and Dr. Heather Young, Professor and founding dean emeritus of the Betty Irene Moore School of Nursing at UC Davis. While they identified the considerable challenges we face, including a growing demand for caregiving and a decreasing supply of paid caregivers, they also pointed to promising solutions.

On a policy level, Dr. Reinhard noted that 45 states have now passed The Caregiver Advise, Record and Enable (CARE) Act, which requires hospitals to document the name of the patient’s caregiver in the medical record, notify the caregiver of the patient’s discharge, and provide instruction about caregiving at home. How these laws are implemented will be key in addressing the need to engage caregivers in patient care. On a practical level, the AARP has developed a Family Caregiving How-To Video Series, to educate family caregivers on a range of topics, including medication administration, incontinence care, and mobility. All the videos are available in English, and many are available in Spanish as well. The American Journal of Nursing also partnered with the AARP to publish a series of articles and handouts to help nurses educate family caregivers on the widening complexity of tasks that caregivers are expected to manage at home.

These resources are essential as the Hospital at Home movement takes hold. It’s a model of care that enables patients to receive acute medical care at home instead of in a hospital, and it has existed since the 1970s. As the COVID-19 pandemic hit, the Centers for Medicare and Medicaid Services (CMS) established waivers and Medicare payments that greatly increased the availability of Hospital at Home services. Although it is a promising model of care, Dr. Reinhard noted that the waivers do not require health systems to involve caregivers in the decisions about Hospital at Home. It is not yet clear whether each state that has passed the CARE Act will apply to hospitals delivering acute medical care in the home.

While the caregiving crisis is universal, it poses distinct challenges for communities of color and those with fewer social and financial resources. Dr. Young pointed to the need to address equity issues as solutions are developed, and to include diverse voices in a substantive way, by listening to their concerns and ideas. Understanding the financial forces at work for insurers, employers, direct care workers, and families will be an essential part of any solution.

One federal bill to improve the financial picture for families is the bipartisan Credit for Caring Act, introduced last year. It would provide up to $5,000 in refundable tax credits to eligible family caregivers. While its prospects for passage are unknown, our webinar panel noted that it would help ease the financial burden of families that now spend about $8,000 in unreimbursed caregiving expenses each year.

I expect we’ll hear more in the upcoming weeks and months about many of the subjects touched on by our esteemed speakers. On an individual level, many of the solutions presented by Drs. Reinhard and Young may feel overwhelming, but for those of us in patient-facing roles, addressing the invisibility of caregivers is an easy first step. And we can put it into practice today. At each opportunity, acknowledge the caregiver. Find out who helps the patient. Include them in the conversation.

And don’t miss the next conversation in our webinar series on June 24, 2022, featuring Julian Harris, MD, MBA, who will share lessons from his decades of experience as a clinician, policymaker, and entrepreneur in health care innovation and transformation. Sign up for the webinar today!