There are currently almost 46 million Americans aged 65 or older in the United States, and many of these seniors require long-term medical care.  This constitutes more than 15 percent of the entire U.S. population, and this age group is expected to continue growing to 98 million by 2060, at which point it will include a quarter of all Americans.

In 2007, almost 12 million Americans required long-term care in or outside of a residential facility, of which about 63 percent were seniors. Of these, about 4.7 million received home health care, 1.3 million resided in nursing homes, and 1.2 million were in hospices. Another 700,000 were in residential care communities, while 270,000 utilized adult day service centers. By 2050, the number of people in the U.S. who will require long-term care is expected to grow to almost 27 million.

For millions of Americans with chronic health conditions, the burden of care falls on family members. It is estimated that almost 42 million Americans serve as primary caregivers for seniors, special needs children and disabled adults. Almost 82 percent of these care for one adult, while 15 percent care for two adults, and three percent care for three or more adults.

There are many responsibilities that family caregivers fulfill.  These may include mundane duties like shopping, housekeeping, laundry, food preparation and transportation. Family caregivers also often serve as medical care providers by organizing medications, coordinating treatments and consulting with physicians and medical professionals.  While many perform such duties out of familial responsibility, many others are forced to serve in this capacity due to a lack of financial resources; almost 15 percent of seniors live below the poverty line. The economic value of these services provided by family caregivers is estimated to have a value of more than $470 billion.

These family caregivers are critical for the ongoing wellbeing of millions of Americans.  They provide continuous monitoring of the patient and make real-time adjustments to care as health conditions evolve.  They often serve as the primary interface with physicians and nursing staff, providing critical information about the patient and providing care as directed.  In many cases, they act as an advocate with insurers, government agencies and other third parties, ensuring that the patient’s best interests are protected. Most importantly, they may have to make life and death decisions regarding health care.

New Government Programs

Earlier this year, President Donald Trump signed a new law that would establish an advisory council in the Department of Health and Human Services. The purpose of this body is to design a new government initiative to aid family caregivers via financial, workplace or training assistance. In the near future, when the new HHS advisory panel unveils its plan to help family caregivers, there could be new measures like tax credits, more nursing involvement, or higher wages for in-home health care aides.

Simultaneously, 42 states passed the Caregiver Advise, Record, Enable (CARE) Act, which would require hospitals to record the names of family caregivers, notify them when patients are discharged, and provide instructions for home care. Major advocacy groups like AARP lobbied for the passage of the new law and have praised state legislatures for taking swift action.

These new laws reflect the growing recognition among lawmakers and the general public that family caregivers are an essential social resource that should be supported.  It is also acceptance of the fact that many of these caregivers are sacrificing so much of their own lives and resources.  An AARP study found that almost 20 percent of family caregivers are in fair to poor health, significantly lower than their non-caregiving counterparts. It is estimated that caregivers lose almost $300,000 in earnings over their lifetime due to these added responsibilities.

Although many of these ill or infirm patients have no alternative to relying on loved ones, but these sacrifices made by family caregivers may be in vain.  Often family caregivers lack the training and specialized skills needed to care for a patient, especially those with high needs.  High needs patients include those with dementia or two or more health conditions.

That is why the CARE Act could be revolutionary.  In pilot programs across the country, training and education has made a serious impact on the lives of long-term patients and their family caregivers.  One program in Los Angeles offers greater nurse support for family caregivers taking care of patients with Alzheimer’s or dementia.  Since the program started four years ago, patients in this program were 33 percent less likely to enter a long-term care facility and they utilized $2,100 less in Medicare services every year.

How Helping Family Caregivers Helps All of Us

Once these programs are implemented nationwide, the cost savings to patients, caregivers and payers could be enormous. As family caregivers obtain more knowledge in how to deliver care more efficiently and successfully, they will need to sacrifice less of their personal resources.  Over the long term, this would likely produce less of a burden on society as a whole, as more patients become more self-sufficient.

Family caregivers operate as crucial links in the health care system, one that is often unrecognized.  Almost 69 percent of hospital patients lack access to follow-up care after they are discharged. Without support from family caregivers, many of these patients would have to be readmitted, producing an even greater financial burden upon themselves as well as on an already stretched health care system.  Because of the services that family caregivers provide, hospitals and medical care providers can devote precious resources to the neediest cases.

Another key benefit of the CARE Act will be reducing the stress and confusion for family caregivers.  Because they are formally designated as family caregivers, they will have an easier time accessing health care resources like nurses, pharmacists and social services. Family caregivers will also have more information about whom to contact when an unexpected medical situation arises.  This should relieve them of some of the psychological burden on these essential care providers.