COVID‐19 Confirms It: Paid Caregivers Are Essential Members of the Healthcare Team

To the Editor: As a geriatrician providing home‐based primary care in New York City during the coronavirus disease 2019 (COVID‐19) pandemic, I have received two types of emergency calls from my patients or their families. The first came when one of my patients developed a new fever or cough and the possibility of serious COVID‐19 loomed. The second type caused equal anxiety: a patient unexpectedly lost access to paid home care. Although my medical training and experience prepared me for the first, the second type of emergency felt insurmountable.

Paid caregivers (i.e. home health aides, personal care attendants, or other direct care workers) provide essential at‐home assistance with daily tasks such as cooking, bathing, and medication management for individuals with functional and cognitive disability. In the United States, nearly 30% of those who reported rarely or never leaving the home received paid care ¹ and about one‐half of those with advanced dementia living at home received paid care. ² In my New York City practice, the numbers are even higher: most (80%) of patients receive paid care. Without this care, they could not remain in the community.

The arrival of COVID‐19 in New York City resulted in widespread disruption of these essential care arrangements. When my patient with advanced dementia developed a new cough and her home care agency pulled its live‐in paid caregiver from her home, her granddaughter contemplated sending her to the hospital so she could get her needed daily care. One daughter struggled to provide daily care for her mother's pressure ulcer after, out of fear of introducing COVID‐19 into the home, she had asked her mother's longtime paid caregiver to stay away. Another patient found that despite the effort her paid caregiver made to avoid infection as she took public transportation to work daily, she developed COVID‐19. Without her caregiver, my patient had fallen twice in 1 week trying to get out of bed independently.

For my patients and their families, these caregiving changes were not simply logistical challenges but true health emergencies with clear medical consequences. Paid caregivers’ work is often considered “unskilled,” but patients cannot live safely in the community without it. Furthermore, paid caregivers often perform health‐related tasks beyond providing functional support such as reporting changes in symptoms, enacting exercise recommendations, and providing emotional support. ³

Yet paid caregivers are not routinely considered part of the healthcare team, and research suggests that communication between paid caregivers and healthcare providers is limited. ⁴ COVID‐19 drove this point home. Although I have long considered my patients’ paid caregivers partners in home‐based care, I lacked the necessary information to contact their agencies (if they worked with one) and to help them procure and effectively use the personal protective equipment (PPE) they needed to safely care for patients with suspected COVID‐19.

The medical system's response to COVID‐19 exemplifies the problematic separation between medical and long‐term care that currently exists within our healthcare system. The best health advice for older frail patients was to stay home, and healthcare providers offered televisits and telephonic symptom management to avoid unnecessary emergency department visits. Yet what this meant for paid caregivers working in the home was not considered. Early on in the COVID epidemic in New York City, home care agencies reported inadequate COVID‐19 training, limited workforce capacity, and inadequate PPE. ⁵ This left both patients and paid caregivers vulnerable.

As COVID‐19 accelerates existing trends to move long‐term care from facilities into the community, ⁶ , ⁷ better integration of paid caregivers into the healthcare team will be necessary. One of the most important barriers to integration is a lack of standard training for paid caregivers. ⁸ Medicaid is the largest public funder of paid caregiving, yet training and supervision of the Medicaid‐funded paid caregiver workforce varies considerably from state to state, ⁹ with very limited training in coordinating care with other health providers. ⁸ Physicians and other medical care providers must partner with advocacy groups and community‐based long‐term care providers to develop consistent, competency‐based training for paid caregivers. This will ensure both that paid caregivers have the essential skills to participate meaningfully in team‐based care and that healthcare providers can reliably count on this participation.

The COVID‐19 pandemic makes clear that caring for our most vulnerable older adults in a time of crisis takes the coordinated efforts of the full healthcare team. This team must include the paid caregivers who support these patients at home every day.