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Seeing and Supporting Family Caregivers

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.
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.

Caregiving NOW! with Susan Reinhard & Heather Young


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!