Home Alone Revisited: Family Caregivers Providing Complex Care

Susan C. Reinhard
Heather M. Young
Carol Levine
Kathleen Kelly
Rita Choula
Jean Accius
April 2019


This report includes national survey on family caregivers and their experiences in managing complex medical and nursing tasks for their family members at home, as well as recommendations to improve the supports for family caregivers.


The 2012 Home Alone study was the first national examination at how family caregivers support medical and nursing tasks – such as medication management, wound care, and other tasks in the home setting that are usually performed by trained medical providers in hospitals – for people with multiple physical, cognitive, and behavioral health challenges. This report dives deeper into the experiences of these caregivers and includes recommendations for health care organizations, policymakers, and other stakeholders.


Fifty percent of family caregivers in this study sample said they perform complex care tasks. These caregivers spend more than twice as many hours per week providing care compared to those that don’t perform these tasks.  Socially isolated caregivers experience more difficulties with complex care. Caregivers performing more complex tasks experience greater stress and financial concerns.

Related to the Caregiver Advise, Record, Enable Act provisions, around 50 percent of caregivers stated that patients were asked by hospital staff to identify a family caregiver. Only 20 percent of family caregivers were given at least 24 hours’ notice of hospital discharge. Two out of five reported that they did not receive instruction for complex care tasks.


Health care professionals, policymakers, and other stakeholders can use these findings to improve supports for caregivers providing complex care to family members.

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