By Susan
Reinhard, Lynn Friss Feinberg, November 20, 2019 09:47 AM
The aging of the population and its impact on
families have implications for all sectors of our nation and can no longer be
viewed as a private, family-only issue.
That takeaway comes out loud and clear in our
newly released update of the Valuing the
Invaluable series. More than ever, the 2019 report reveals that
addressing the everyday realities of family caregiving—a term that refers to
providing care for an adult family member or close friend with a chronic,
disabling, or serious health condition—is a fundamental challenge for the
nation.
Value Measured in Hundreds of Billions
Our new report finds that about 41 million
family caregivers in the U.S. provided an estimated 34 billion hours of care to
an adult with limitations in daily activities in 2017. The estimated economic
value of their unpaid contributions was approximately $470 billion. By
comparison, all out-of-pocket spending on U.S. health care in 2017 was only
$366 billion.
Such numbers underscore the vital role family
caregivers play in the delivery and coordination of health care and long-term services and supports
(LTSS) in the U.S. Imagine what would happen if family
caregivers, most of whom also hold down jobs, were no longer available to
provide care. The economic costs—in health care, LTSS, and in workplaces—would
increase astronomically.
The New, Emerging Family Caregiver Demographic
These realities are particularly relevant
today because families and family caregivers are
changing. More women, traditionally the family caregivers for older
adults, have paid jobs. Men, meanwhile, increasingly take on caregiving duties.
Smaller families mean fewer siblings to help share the care. High rates of
divorce and smaller family sizes, coupled with more working families, means
that in the future, older adults with health and functional needs will have
fewer potential family members on whom they can rely for everyday help.
Key trends include the increasing diversity of
family caregivers, the greater complexity of care needs,
larger numbers of family caregivers balancing paid work and family
caregiving, and high out-of-pocket caregiving expenses.
But perhaps above all else, the key mega-trend
to understand is this: the availability of family caregivers is unlikely to
keep pace with future demand. In just 7 years (2026), baby
boomers themselves begin to turn 80 years old—when people are most
at risk to need LTSS and receive help from others to carry out tasks of daily
living. Meanwhile, the U.S. population aged 45-64 (peak caregiving years) will
increase by only 1 percent between 2010 and 2030. During the same period, the
80-plus population will increase by a whopping 79 percent.
Change Underway
Fortunately, since we published the last Valuing
the Invaluable Update in 2015, progress has come, although it’s not
happening fast enough. Advancements in LTSS, health care, and in workplace
policies have all contributed to better support the well-being of caregiving
families. On the policy side, a national strategy is on the horizon—under
the Recognize, Assist, Include,
Support, and Engage (RAISE) Family Caregivers Act to support
family caregivers.
In addition, Medicare and Medicaid continue to
better identify and support family caregivers. Policy and training initiatives
continue to strengthen the capacity of health care and social service providers
to recognize and engage family caregivers, and to evolve towards adopting
person- and family-centered care as standard practice.
Meanwhile, the vast majority of states have
passed the Caregiver Advise, Record, Enable
(CARE) Act. The CARE Act calls on hospitals to identify and support
family caregivers when their relatives go into the hospital and as they
transition home.
Progress also occurred in the assessment of
family caregivers’ own needs and preferences in home and community-based
services (HCBS) programs. Family caregiver assessments ask questions of the
care recipient’s family member about his or her own health and well-being, and
any services or supports he or she may need to be better prepared for the
caregiving role.
Finally, states are leading the way in
adopting paid family leave policies to include family caregiving so that people
can keep earning a living while handling caregiving responsibilities. Eight
states and the District of Columbia have or will soon have such policies.
Charting a Path Forward
Despite important policy changes since the
2015 report, we need more robust action. This means new policies and programs
in both the public and private sectors, educational efforts for providers and
families, and a collective priority to change the culture of care in the U.S.
Susan Reinhard, RN, PhD, FAAN, is a senior
vice president at AARP, directing its Public Policy Institute, the focal point
for AARP’s public policy research and analysis. She also serves as the chief
strategist for the Center to Champion Nursing in America, a resource center to
ensure the nation has the nurses it needs.
Lynn Friss Feinberg is a senior strategic
policy advisor at the AARP Public Policy Institute. Her areas of expertise
include family caregiving, long-term care, dementia care, and home care
quality.
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