By Susan C. Reinhard, PhD, RN, FAAN, senior vice president and director, AARP Public Policy Institute, chief strategist, Center to Champion Nursing in America; Elaine Ryan, MPA, vice president of state advocacy and strategy integration, AARP government affairs; and Trish O’Keefe, PhD, RN, NE-BC, interim president, Morristown Medical Center, New Jersey

Teaching a daughter to help her mother with range-of-motion exercises.

Teaching a daughter to help her mother with range-of-motion exercises

The public trusts nurses to care for them and to teach them how to care for themselves and for those they love. But a 2012 AARP/United Hospital Fund report funded by the John A. Hartford Foundation, Home Alone: Family Caregivers Providing Complex Chronic Care, shows there is a big disconnect. In this first nationally representative study of families providing complex care activities, almost half reported that they had provided medical/nursing treatments, including injections, wound care, administering multiple medications, managing colostomies, and giving tube feedings and nebulizer treatments—among many other tasks that nursing students find daunting when they are first learning how to do them.

Family caregivers are expected to step right in, with little to no instruction or support. Most (nearly 7 out of 10) of those they cared for did not get a home visit by a health care professional, despite multiple encounters with the health care system. Many of these family caregivers said they had to learn how to do complex tasks on their own. For example, close to 60% had to learn about at least some medications on their own. More than a third performed wound care on their own, but only 36% said a nurse or physician in a hospital had taught them, and only 25% had received teaching from a home care nurse. Many were worried about making a mistake or harming the person they were trying to help.

Family caregivers need more support. Recent research shows that in 2013 there were 40 million family caregivers who provided $470 billion in unpaid care to an adult with limitations in daily activities. About 50% to 60% of family caregivers have a full- or part-time job. One in three provides an average of 62 hours of care a week—and eight out of 10 of these “intense caregivers” perform complex medical/nursing tasks.

How can nurses help? No doubt many nurses are trying to meet this critical need to teach family caregivers. But we need a more comprehensive, fully supported approach. One step in that direction is the Caregiver Advise, Record and Enable (CARE) Act, which focuses on hospital admissions and discharges and has been described as a “commonsense solution to help family caregivers.” There are three parts that respond to requests from people around the country.

  • First, the CARE Act requires hospitals to permit the patient to designate a family caregiver who will be recorded in the hospital record (and hopefully engaged in the care team, including the discharge planning).
  • Second, the hospital must notify that caregiver when the patient is to be moved or discharged.
  • Third, the hospital must offer instructions on the medical/nursing tasks that are part of the discharge plan.

As of October, 33 state offices (OK, NJ, PR, ND, MS, NY, IN, VA, NM, MN, KS, CT, HI, NH, WV, MA, WI, MD, IA, IL, NV, CO, RI, OR, ME, TX, AR, AK, CA, AL, MI, DC, PA) had introduced the CARE Act; it has been signed into law in 15 states (the states in italics). In many of these states, nurses testified or provided letters of support to advance this legislation.

One health system’s efforts to better meet caregiver needs. New Jersey was one of the first to pass the CARE Act, in November 2014. Nurse leaders in the Atlantic Health System embraced this policy and went to work quickly to prepare for implementation in May 2015.

A five-hospital system in central New Jersey, Atlantic Health created a system-wide multidisciplinary group to map out the touch points of both the patient and the family caregiver throughout the hospital stay. Their efforts to improve their processes to support family caregivers included the following:

  • Inventoried educational materials and identified potential gaps in resources.
  • Revised patient/family contact sheet to include the family caregiver’s name/contact information from the initial point of the patient’s hospital admission or preadmission for planned procedures. This action alerts all clinical personnel about who the patient identifies as the family caregiver at home and identifies the status of caregiver education during the hospital stay.
  • Revised education materials to: (1) ensure they would be understandable to all caregivers; (2) address the defined areas of education needed, such as medication reconciliation; and (3) include caregiver documentation.
  • Educated physicians, nurses, care managers, allied health personnel, and registration staff on the importance of the CARE Act and the new process changes; emphasized the goal of improved care coordination for patients after discharge.
  • During daily patient rounds, included tracking progress in identifying the family caregivers and documented status on a daily report.
  • To make education accessible, especially for family caregivers who must travel far distances, embraced open visitation and ensured that education would be available around the clock or by electronic options.

Atlantic Health’s plan is to track and trend the educational efforts to family caregivers to determine if their knowledge has improved. They will also examine alternative ways to educate the caregiver through different media approaches.

The nursing staff ensures that family caregivers have a contact number to call Atlantic Health if they have any follow-up questions, need reinforcement of the education they received, or have any additional needs as caregivers.

In the coming year, a new Home Alone Alliance will produce tools to guide the development of teaching videos and other promising practices. Some videos will include multicultural caregivers and highlight ways to work with a person suffering from dementia; others will focus on medication administration and wound care.

Getting involved. There are many ways we can improve how we prepare family caregivers for their complex job and we welcome all ideas. Please send ideas to or tweet @susanpolicy. We need nurses across all settings to offer their expertise, creativity, and commitment to better support the largely invisible army of family caregivers who are the real backbone of our health care system.