Home Alone: Family Caregivers Providing Complex Chronic Care

by Susan C. Reinhard, RN, PhD, FAAN, Senior Vice President and Director, AARP. Carol Levine, MA, Director, Families and Health Care Project, United Hospital Fund & Sarah Samis, MPA, Senior Health Policy Analyst, United Hospital Fund, Public Policy Institute, October, 2012

Home Alone Series:

Related Reports:

Assessing Family Caregiver Needs: Policy and Practice
Valuing the Invaluable: 2011 Update, the Growing Contributions and Costs of Family Caregiving
Caregiving in the U.S. 2009
Raising Expectations: A State Scorecard on Long-Term Services and Supports for Older Adults, People with Physical Disabilities, and Family Caregivers

This study challenges the common perception of family caregiving as a set of personal care and household chores that most adults already do or can easily master. Family caregivers have traditionally provided assistance with bathing, dressing, eating, and household tasks such as shopping and managing finances. While these remain critically important to the well-being of care recipients, the role of family caregivers has dramatically expanded to include performing medical/nursing tasks of the kind and complexity once only provided in hospitals.

To document this major shift, the AARP Public Policy Institute and the United Hospital Fund undertook the first nationally representative population-based online survey of 1,677 family caregivers to determine what medical/nursing tasks they perform. Both organizations contributed to this report. A few highlights of the results include:

Almost half (46%) of family caregivers performed medical/nursing tasks for care recipients with multiple chronic physical and cognitive conditions
Three out of four (78%) family caregivers who provided medical/nursing tasks were managing medications, including administering intravenous fluids and injections
Caregivers found wound care very challenging, more than a third (38%) wanted more training
Most family caregivers who provided help with medical/nursing tasks believed they were helping their family member avoid institutionalization

This report reveals the complexity and difficulty of specific tasks, the lack of support and training family caregivers receive, and the effect on their quality of life. The findings highlight an urgent need for both individual and collective action. The report makes ten recommendations, including:

A consensus-building body should revisit measures used to define what caregivers do.
Accrediting and standard-setting organizations should strengthen their oversight of how well institutions meet family caregiver needs and require corrective steps to address deficiencies.
Academic and government researchers should conduct further studies to understand medical/nursing tasks performed by different types of family caregivers and their needs for training and support.