Caregiving_Walk_400pWhen it comes to improving the care of older adults, family caregivers are too often left out of the equation. This occurs despite their critical role in supporting the health and well-being of millions of older people.

The CARE Act, model legislation developed and spread by AARP and its state offices, has been enacted in about 30 states, providing a new tool to help balance that equation by requiring the identification, notification, and education of family caregivers of individuals who are hospitalized. (For more information, read the AARP Thinking Policy blog post Stepping Up to Support Caregivers.)

While this is just one step in one setting, we have the chance to help implement this law in the right way and leverage it into broader changes so that family caregivers are recognized and assisted in all parts of the health care system.

An estimated 30 million friends and family members provide care for an older person, whether it is help with daily activities like bathing and eating, long-distance care coordination, or short-term care for an illness or injury. Millions more are caregivers for younger disabled people and those facing serious illness.

A groundbreaking study by the AARP Public Policy Institute and the United Hospital Fund supported by The John A. Hartford Foundation revealed that nearly half of these family caregivers are performing complex medical and nursing tasks such as cleaning wounds, giving injections, and managing multiple medications. Little training, if any, is provided for these difficult tasks and this can be particularly dangerous after a hospitalization.

The Caregiver Advise, Record, Enable (CARE) Act has received bipartisan support from state lawmakers across the country. While slightly different in each state, the CARE Act has three common essential elements. The law requires that hospitals:

  1. Record the name of the family caregiver on the medical record of your loved one.
  2. Inform the family caregiver when the patient is to be discharged.
  3. Provide the family caregiver with education and live instruction of the medical tasks he or she will need to perform for the patient at home.

Last week, I attended an implementation strategy meeting with AARP, many of their state office representatives, and their organizational partners (many of them our grantees). It was exciting to hear directly from two health care systems in New Jersey, where the CARE Act is one year old. In response to the law, these systems are revising their electronic health records to identify caregivers, creatively using video and in-person training before hospital discharge, and tracking data related to caregivers so they can continuously improve. It is clear that family caregivers are a priority and a part of their care equation.

Given Medicare penalties for 30-day hospital readmissions, it may seem obvious that it's in the best interest of hospitals to have family caregivers well-prepared. However, changing behaviors and habits is incredibly hard, especially in the often chaotic and fast moving world of hospital admissions and discharges. This is why a law and public accountability are needed.

Courtesy of AARP Courtesy of AARP

In addition to continuing to press for passage of the CARE Act in states, there are many important areas of work ahead in implementation of the law. In states like New York and Washington where the Act has already been passed, we need strong outreach and education to the public, adequate training of hospital staff, and the appropriate development of regulations to help monitor and enforce the laws. Probably most importantly, we need states like New Jersey to share their lessons and learning with other states that have more recently enacted the legislation. AARP is facilitating much of this sharing and we will work with our grantees and partners to assist, as well.

The millions of family caregivers in this country need support so that they and the loved ones for whom they care can remain as healthy and well as possible. That is why family caregiving is one of our three main priority areas at The John A. Hartford Foundation. It is why we had a special celebration of the heroic work of family caregivers in March and created this resource page. It is why we funded and are anxiously awaiting the practice and policy recommendations from a national report on family caregiving coming from the Health and Medicine Division of the National Academies of Science, Engineering, and Medicine (formerly the Institute of Medicine) in the fall.

And it is why we applaud AARP and its many partners for their work in the states on the CARE Act and encourage all of you to keep informed and engaged so that our health systems make family caregivers central to good care of older adults.

For More Information

View or download a PDF of Family Caregivers as Partners in Care Transitions: The Caregiver Advise Record and Enable Act by Eric A. Coleman, MD, MPH,  Professor of Medicine and Head of the Division of Health Care Policy and Research at the University of Colorado Anschutz Medical Campus, and director of the Care Transitions Program.

Read Stepping Up to Support Family Caregivers, by Susan Reinhard, RN, Ph.D., FAAN, a senior vice president at AARP and director of its Public Policy Institute, and Elaine Ryan,  vice president of State Advocacy and Strategy Integration in AARP's Government Affairs group.