Recognizing and supporting the critical role of family caregivers

AARP is a nonprofit, non-partisan membership organization for people 50 and over with more than 37 million members nationwide. In the Commonwealth, AARP Massachusetts advocates for the over 50 population by helping people stay in their home or community, by strengthening financial security of our 800,000 members, and by recognizing the critical role of family caregivers.

AARP is fighting to support the Bay State’s 844,000 family caregivers who help make it possible for older Americans and other loved ones to live independently at home — where they want to be. These family caregivers provide 786 million hours of care a year at an estimated value of $11.6 billion. Who is a caregiver? A family caregiver is any unpaid relative, friend, partner or neighbor who has a significant relationship with and who provides a range of assistance for an older adult or adult with a chronic or disabling condition. We know that the average Massachusetts family caregiver is female, 55 years old or older, caring for a loved one of 79 years old, while working full or part-time with an annual household income of less than $100,000.

Family caregivers face emotional, financial, and physical challenges when caring for their loved ones, and they need support to make their big responsibilities a little bit easier. We can support family caregivers so they can safely care for their older loved ones at home — keeping them out of nursing homes, and preventing unnecessary and costly hospitalizations. We can help with some basic support — and commonsense solutions — like training, help at home, flexibility at work, and tools.

AARP recently surveyed Massachusetts voters age 45-plus about caring for their families. We learned that 70% are current or former caregivers, while 49% are likely to be caregivers in the future. They believe that living independently at home with caregiver assistance is the ideal situation when basic tasks become difficult. Massachusetts voters strongly support policy options that would help them age in their own homes and communities. They want hospitals to better support family caregivers when their loved ones are admitted, specifically: 94% stated that hospitals should demonstrate medical and nursing tasks; 92% stated that hospitals should keep family caregivers informed of major decisions, like discharges; and 86% stated that hospitals should record the name of the family caregiver in the medical record.

The 2012 “Home Alone” report, a national survey conducted by AARP’s Public Policy Institute and the United Hospital Fund, found that among the more than 1,600 family caregivers surveyed, nearly half (46 percent) reported performing medical and nursing tasks for care recipients with multiple chronic physical and cognitive conditions. These tasks include managing multiple medications, providing wound care, preparing food for special diets, using monitors, and operating specialized medical equipment. These tasks were in addition to the assistance provided with bathing, dressing, eating, and household tasks. Because of these findings, it is evident that the role of family caregivers has expanded dramatically to include performing medical and nursing tasks of the kind and complexity once provided only by hospitals, nursing homes and home care providers. And for which family caregivers have received little to no training.

As a result of the findings of the “Home Alone” report, the CARE Act was developed and includes three major components that would address the needs of family caregivers and their loved ones when they are admitted into the hospital: 1) the name of the family caregiver is recorded when a loved one is admitted to a hospital; 2) the family caregiver is notified if the loved one is to be discharged to another facility or back home; and 3) the facility provides an explanation and live instruction of the medical tasks the family caregiver will perform. So far, the CARE Act has been passed in 17 states.

Family caregivers nationwide perform unpaid care valued at about $470 billion a year, helping their loved ones stay at home — and out of costly institutional care, often paid for by Medicaid. In every state, the value of this unpaid care is greater than the annual cost of Medicaid for institutional stays, like nursing homes, and services to help people remain at home. In Massachusetts, the value of this unpaid care is 2.9 times greater than what the state spends on Medicaid — in a year — for institutional stays, like nursing homes, and services to help people remain at home.

In Massachusetts, Representative Chris Walsh (D) of Framingham and Senator Linda Dorcena Forry (D) of Dorchester have sponsored the CARE Act, known as Senate Bill No. 1153 and House Bill No. 2081. Please contact your legislators and ask for their support of the Caregiver, Advise, Record and Enable (CARE) Act.

Written by Mike Festa, AARP Massachusetts State Director