Mount Sinai Researchers Study Caregiving in Homes and a Health Care Workforce in Transition
Studies published in Health Affairs examine spousal caregiving in last years of life and the adequacy of training and preparation for paid caregivers
As older Americans choose to remain in their homes late in life, shifting care away from the institutional setting, many questions are surfacing about how to ensure the best outcomes for them.
In the June issue of Health Affairs, focused on the “Aging Workforce,” Mount Sinai researchers share important background data on home caregiving for the elderly derived from two new studies. The issue comes out during a time of national debate about the role of caregivers and policy discussions.
The first study addresses the issue of spousal caregiving in “Spousal Caregivers Are Caregiving Alone In The Last Years of Life.” “Even with children living nearby, we found that more than half of spouses are acting as solo caregivers, and they’re working long hours that are both emotionally and physically demanding, often in isolation. We worry about these solo caregivers who are particularly vulnerable, as they themselves tend to be older, in poor health, and facing the challenging emotional and financial experiences of widowhood,” says lead author Katherine Ornstein, PhD, MPH, Assistant Professor of Geriatrics and Palliative Medicine at the Icahn School of Medicine at Mount Sinai and Director of Research for Mount Sinai’s Institute for Care Innovations at Home.
Among spouses who received support, Dr. Ornstein and colleagues found, two out of three were helped by their children, 40 percent received paid help, and 11 percent received support from other family or friends. While some state and federal policy proposals aim to systematically recognize and assess caregivers, the authors conclude that further innovations in care delivery and reimbursement are needed.
The researchers were surprised to learn how often spouses were caregiving on their own, regardless of caregiver gender, presence of adult children, or patient diagnosis. “Our findings are an important reminder that health care providers need to recognize, assess, and address the caregiving situation and provide support for family caregivers of people with serious illness, especially as we increasingly move toward home-based care,” says Dr. Ornstein.
Finally, Dr. Ornstein and colleagues note the pressing need for the widespread availability of palliative care services for seriously ill patients living in their homes. For many people, the authors write, the availability of non-hospice palliative care outside the hospital setting is limited at best. The expansion of community-based palliative care is critical for older adults and their caregivers who wish to remain at home.
The second study, titled “Beyond Functional Support: Health-Related Tasks Paid Caregivers in New York State Perform in the Home,” examines the tasks paid caregivers (including home health aides, home attendants, and other direct care workers) perform as they care for older adults at home, and assesses the adequacy of paid caregiver training and preparation. Mount Sinai researchers conducted qualitative interviews with patients (or their proxies) and their paid caregivers in New York City.
“Paid caregivers are often tasked with helping older adults with functional impairment meet their basic needs, such as bathing and cooking. We found that in the course of this routine care, these caregivers perform a wide variety of additional tasks that support patient health, like recognizing acute medical problems, reporting patient status to health care providers, encouraging physical activity, and providing companionship and personal support. Yet formal training for paid caregivers may not include these topics. In fact, half of the health-related tasks performed by paid caregivers are not included in the basic training for Medicaid-funded paid caregivers in New York," says lead author Jennifer Reckrey, MD, Associate Professor of Medicine, and Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai.
"In light of our rapidly aging population, these findings speak to the important role that paid caregivers can play in the health of older adults living at home and the need for a wider scope of training to prepare them,” adds Dr. Reckrey.
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