Science Organization With 300 Nobel Laureates Confirms: Caregivers Need Help

We read a lot about the trend toward person-centered elder care. The nation's leading association of scientists recently reminded us that care also should be family-centered.

Wife helps her husband into his wheelchair from car

During 2016, the respected National Academies of Sciences, Engineering, and Medicine ("The Academies") released important scientific reports on topics ranging from the opioid crisis to vaccine safety, climate change, homeland security and the search for alien life.

Perhaps most notably for Caring Right at Home readers is a report from The Academies that focused on the ever-growing caregiver crisis and the challenges already being faced by family caregivers today.

The Academies, which include in their membership more than 300 recipients of a Nobel prize, released the committee report, titled Families Caring for an Aging America, in September 2016. Among their findings:

Family caregivers are the cornerstone of the nation's elder care system. Today's caregivers provide hands-on medical care at home, help their loved ones navigate our complicated healthcare system, provide financial support for older loved ones, and often are called upon to serve as surrogate decision makers. The report states, "As a society, we have always depended on family caregivers to provide the lion's share of long-term care and supports for our elders."

Soon many more seniors will need help, but there will be fewer family caregivers to provide it. The committee found that by 2030, 72.8 million people in the U.S. will be age 65 or older, making up 20 percent of the population. Many of these seniors will have nowhere to turn for help but their families. Yet, according to The Academies, "Current trends in family patterns—including lower fertility, higher rates of childlessness, and increases in divorced and never-married statuses—suggest a shrinking pool of potential caregivers in the near future. Unlike in the past, older adults will have fewer family members to rely on, more likely will be unmarried or divorced and living alone, and may be geographically more distant from their children."

The role of caregivers has been underappreciated. The committee found that while there's been a push toward person-centered care in our healthcare system, family caregivers are often "marginalized or ignored in the delivery of healthcare and long-term services and supports." Gone are the days when a senior could expect to linger at the hospital for weeks recovering from an illness or injury. Today, they are discharged, as the saying goes, "sicker and quicker," with the expectation that family will be able to get them home safely, even dealing with hands-on medical care and devices such as catheters, drainage tubes and wound care. Yet, reports the committee, these family members seldom receive adequate training, which gives rise to a situation where "family caregivers describe learning by trial and error and fearing that they will make a life-threatening mistake."

Caregiving creates physical, emotional and financial challenges. The committee report affirmed that providing care for a loved one offers emotional rewards. But, said committee chair Richard Schulz, "Caregivers are potentially at increased risk for adverse effects in virtually every aspect of their lives—from their health and quality of life to their relationships and economic security. If the needs of the caregivers are not addressed, we as a society are compromising the well-being of elders. Supporting family caregivers should be an integral part of the nation's collective responsibility for caring for its older adult population."

It's time for a change. The Academies call for better caregiver support from our government agencies at every level. At the time the report was released, the outcome of the 2016 election was not known, but the committee called for the new presidential administration to "take immediate steps to address the health, economic, and social issues facing family caregivers of older Americans." They also called upon the next secretary of the U.S. Department of Health and Human Services to implement a new National Family Caregiver Strategy in collaboration with other federal agencies and private-sector organizations.

The Families Caring for an Aging America report is available for free download from the National Academies Press

Initially formed in 1863 by President Abraham Lincoln, the National Academies of Sciences, Engineering, and Medicine are private, nonprofit institutions that provide expert advice on some of the most pressing challenges facing the nation and the world. Their work helps shape sound policies, inform public opinion, and advance the pursuit of science, engineering, and medicine.

Advocating for and Accessing Care for Our Caregivers

Right at Home caregiver with a clients

The above report from The Academies is just one of many recent studies that provide a powerful confirmation of the situation and needs of caregivers. If you or someone you know is providing care for an elderly loved one, advocate! Contact your members of Congress and other elected officials to express support for caregivers. And learn about services that are currently available in your area to supplement the care provided by family. Your community's Aging and Disability Services may offer help, free of charge or at a subsidized cost. Check out volunteer organizations and support groups for caregivers. For seniors with complex care needs, a nursing home or other supported living setting might be the best choice. To help loved ones stay at home, many families today hire in-home care. Skilled nursing services can be provided in the home. At a more modest cost, professional home caregivers provide assistance with bathing, dressing, grooming and other personal care tasks; meal preparation; medication reminders; transportation; and memory care for loved ones with Alzheimer's disease or other dementia.

For information on topics related to home care and healthcare, visit our Home Care and Healthcare Advocacy group on LinkedIn.

Right at Home, Inc. is a national organization dedicated to improving the quality of life for those we serve. We fulfill that mission through a dedicated network of locally owned providers of in home care services.