Supporting the At-Home Care Team

Patients get better care when family has access to answers

By Megan Headley

Family caregivers have long played a critical role in keeping elderly adults and individuals with chronic conditions out of the hospital, even if these unpaid caregivers haven’t always been able to get the support they need. Now, that may be beginning to change.

President Biden’s American Jobs Plan is seeking $400 billion to expand access to at-home and community-based care services and support for individuals on Medicaid. It’s one of many ways that healthcare professionals are recognizing the important role of family caregivers at a time when their services are more in demand than ever.

Caregivers help lower healthcare costs

By 2030, all baby boomers will be age 65 or older, increasing the already strong need for elderly care. In a 2020 report, Caregiving in the U.S., AARP and the National Alliance for Caregiving identified that nearly one in five people (19%) are providing unpaid care to an adult with health or functional needs. In the wake of the COVID-19 pandemic, when staying at home meant reducing risk of infection, the value of at-home caregivers became even more evident.

While much of this value is the result of the costly nature of care, which keeps many family members from calling in paid support, there is also clear value to health systems in supporting at-home care by family members. A 2019 study in Gerontologist mapped out the costs of care for older adults with and without caregivers and determined that, by and large, having a family caregiver reduces utilization of healthcare services and decreases the risk of institutionalization.

A 2017 study in the Journal of the American Geriatrics Society determined that integrating informal, unpaid caregivers into the discharge process can reduce readmission rates by 25% over 90 days. “While integrating informal caregivers into the patient discharge process may require additional efforts to identify and educate a patient’s family member, it is likely to pay dividends through improved patient outcomes and helping providers avoid economic penalties for patient readmissions,” commented A. Everette James, JD, MBA, director of the University of Pittsburgh’s Health Policy Institute and senior author of the study, in a statement.

“As people live longer with more complex issues, and COVID clearly demonstrated this, we depend upon families to be able to cope with the needs of family members with health problems,” says Claudia Fine, chief professional officer at eFamilyCare, a digital platform that connects family members with care advisors. However, as Fine has determined through eFamilyCare, simply involving family caregivers in appointments isn’t enough. Caregivers also need access to education and their own support system if they are to effectively help manage patient care.

New strategies for supporting caregivers

While a number of organizations seek to connect family caregivers with resources and emotional support, the eFamilyCare app aims to ensure that family caregivers have access to patient care information in real time. Through the app, family members are assigned a dedicated care worker, typically a social worker or nurse. Family members can message back and forth with their care worker whenever needed. “We’re not providing care, but we are providing advice and direction about how to access and use needed information, skills, and care, which leaves the family member supported,” Fine says.

Fine notes that the ability to access information can be a major roadblock for many family caregivers. While telehealth appointments are in some ways making primary care providers and specialists more accessible, it can still be difficult to get rapid direction to healthcare problems without seeking emergency care.

“Accessing and navigating the social services system, the government system, and the healthcare system can be a challenge,” Fine says. “I think that resources exist, but people don’t always get to them. Sometimes they don’t know about them. Sometimes they just need encouragement to get to them.”

This is the area eFamilyCare seeks to address. Through the high-touch, high-tech app, eFamilyCare’s advisors coach family caregivers using the Institute for Healthcare Improvement’s 4M framework for care, which drives down healthcare costs through its four-pronged approach to quality patient care: aligning actions in accordance with what matters to the patient; helping manage medications; improving mobility; and managing changes in mentation.

“We have learned that caregivers want the support,” Fine says. “Even if the family caregiver is not actively involved with the care advisor every week, it’s very important to have that touch place and that sense of history.”

Encouraging family to speak up

Providing family caregivers with their own care advisor can also help arm these critical members of the care team with confidence to speak up about issues during doctor’s appointments. Research has indicated a strong trend toward silence from family caregivers when it comes to speaking up to clinicians about patient problems. In a 2018 article in BMJ Quality and Safety, for example, Sigall K. Bell, MD, director of patient safety and quality initiatives for the Raskin Fellow in Medical Education at Beth Israel Deaconess Medical Center, found that more than half of the surveyed family members of ICU patients reported hesitance to speak up about possible clinician mistakes, mismatched care goals, or confusing or conflicting information.

Empowering family caregivers with their own resources and care advisors may be the next step toward driving better care outcomes.

Megan Headley is a freelance writer and owner of ClearStory Publications. She has covered healthcare safety and operations for numerous publications. Headley can be reached at megan@clearstorypublications.com.