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What is Long-Term Care?
By eRollover 2008
Individuals need long-term care when a chronic condition, trauma, or illness limits their ability to carry out basic self-care tasks, called activities of daily living (ADLs), (such as bathing, dressing or eating), or instrumental activities of daily living (IADLs) (such as household chores, meal preparation, or managing money). Long-term care often involves the most intimate aspects of people’s lives—what and when they eat, personal hygiene, getting dressed, using the bathroom. Other less severe long-term care needs may involve household tasks such as preparing meals or using the telephone.
A report prepared by the U.S. Senate Special Committee on Aging
(February, 2000) described long-term care as follows:
It [long-term care] differs from other types of
health
care in that the goal of long-term care is not to cure
an illness, but to allow an individual to attain and maintain an
optimal level of functioning….
Long-term care encompasses a wide array of medical, social,
personal, and supportive and specialized housing services needed by
individuals who have lost some capacity for self-care because of a
chronic illness or disabling condition.1
Because long-term care needs and services are wide-ranging and
complex, statistics may vary from study to study. Sources for the
following information are cited at the conclusion of this Fact
Sheet. For additional information, see the Family Caregiver
Alliance Fact Sheet on Selected Caregiving Statistics.
Who Needs Long-Term Care?
• An estimated 10 million Americans needed
long-term care in 2000.2
• Most but not all persons in need of long-term
care are elderly. Approximately 63% are persons aged 65 and older
(6.3 million); the remaining 37% are 64 years of age and younger
(3.7 million).3
• The lifetime probability of becoming disabled
in at least two activities of daily living or of being cognitively
impaired is 68% for people age 65 and older.4
• By 2050, the number of individuals using paid
long-term care services in any setting (e.g., at home, residential
care such as assisted living, or skilled nursing facilities) will
likely double from the 13 million using services in 2000, to 27
million people. This estimate is influenced by growth in the
population of older people in need of care.5
• Of the older population with long-term care
needs in the community, about 30% (1.5 million persons) have
substantial long-term care needs (three or more ADL limitations).
Of these, about 25% are 85 and older and 70% report they are in
fair to poor health.6
40% of the older population with long-term care needs are poor or
near poor (with
incomes below 150% of the federal poverty level).7
• Between 1984 and 1994, the number of older
persons receiving long-term care remained about the same at 5.5
million people, while the prevalence of long-term care use declined
from 19.7% to 16.7% of the 65+ population. In comparison, 2.1%, or
over 3.3 million, of the population aged 18–64
received long-term care in the community in 1994.8
• While there was a decline in the proportion
(i.e., prevalence) of the older population receiving long-term
care, the level of disability and cognitive impairment among those
who received assistance with daily tasks rose sharply. The
proportion receiving help with three to six ADLs increased from
35.4% to 42.9% between 1984 and 1994. The proportion of cognitive
impairment among the 65+ population rose from 34% to 40%.9
• The prevalence of cognitive impairment among
the older population increased over the past decade, while the
prevalence of physical impairment remains unchanged.10
• In 2002, the percentage of older persons with
moderate or severe memory impairment ranged from about 5% among
persons aged 65–69 to about 32% among persons
aged 85 or older.11
• Individuals 85 years and older, the oldest old,
are one of the fastest growing segments of the population. In 2005,
there are an estimated 5 million people 85+ in the United States.12
This figure is expected to increase to 19.4 million by 2050.13 This
means that there could be an increase from 1.6 million to 6.2
million people age 85 or over with severe or moderate memory
impairment in 2050.14
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Home and Community-Based Care
• Most people—nearly
79%—who need Long-Term Care live at home or in
community settings, not in institutions.31
• More than 13.2 million adults (over half
younger than 65) living in the community received an average of
31.4 hours of personal assistance per week in 1995.32
o Only 16% of the total hours were paid care (about $32 billion),
leaving 84% of hours to be provided (unpaid labor) by informal
caregivers.33
• The trend towards community-based services as
opposed to nursing home placement was formalized with the Olmstead
Decision (July, 1999)—a court case in which the
Supreme Court upheld the right of individuals to receive care in
the community as opposed to an institution whenever possible.
• The proportion of Americans aged 65 and over
with disabilities who rely entirely on formal care for their
personal assistance needs has increased to 9% in 1999 from 5% in
1984.34
• Between 2000 and 2002, the number of licensed
assisted living and board and care facilities increased from 32,886
to 36,399 nationally, reflecting the trend towards community-based
care as opposed to nursing homes.35 Most assisted living
facilities, however, are unlicensed.
• Most assisted living facilities (ALFs)
discharge residents whose cognitive impairments become moderate or
severe or who need help with transfers (e.g. moving from a
wheelchair to a bed.) This limits the ability of these populations
to find appropriate services outside of nursing homes or other
institutions.36
Nursing Home Care
• The risk of nursing home placement increases
with age—31% of those who are severely impaired
and between the ages of 65 and 70 receive care in a nursing home
compared to 61% of those age 85 and older.37
• In 2002, there were 1,458,000 people in nursing
homes nationally.38
Older individuals living in nursing homes require and receive
greater levels of care and assistance. In 1999, over three-quarters
of individuals in nursing homes received assistance with four to
six ADLs.39
• Of the population aged 65 and over in 1999, 52%
of the nursing home population was aged 85 or older compared to 35%
aged 75–84, and 13% aged
65–74.40
• Between 1985 and 1999 the number of adults 65
and older living in nursing homes increased from 1.3 million to 1.5
million. In 1999, almost three-quarters (1.1 million) of these
older residents were women.41
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Long-Term Care Expenditures
• Estimated public and private spending on
long-term care services exceeded $180 billion in 2002. $37.2
billion, or 21%, was paid for out-of-pocket by individuals and
families.42
• In 2002, $103.2 billion dollars were spent on
nursing home care compared to $36.1 billion dollars for care in the
community.43
• In 2000, the estimated economic value of
informal (i.e., unpaid) caregiving is more than both community care
and nursing home care combined—$257
billion.44
• Despite the trend toward community-based care
as opposed to institutionalized care, only 18.2% of long-term care
expenditures for the elderly are for community-based care.45
• In 2002, 16.4 billion Medicaid dollars were
spent for home and community-based services within long-term care.
This figure has increased at a 25% rate annually since 1990.46
• Expenditures for skilled nursing facility (SNF)
care are much greater than care provided in other settings. Average
expenses per older adult in a skilled nursing facility can be four
times greater than average expenditures for that individual
receiving paid care in the community.47
• In 2003, Medicaid paid $83.8 billion dollars
for long-term care services, roughly one-third of all Medicaid
spending. 27.8 billion of these dollars were spent on
community-based long-term care services. Home and community-based
(HCBS) waivers accounted for roughly two-thirds of community-based
long-term care expenditures.48
In 2000, spending for older adults aged 65 or older accounted for
57% of Medicaid dollars, with the remaining 43% spent on those
under age 65.49
• 31.9% of the annual estimated home care
expenditures were paid for by Medicare in 2003, a little over 18%
were paid for out-of-pocket or by private insurance, and
approximately 13% were covered by Medicaid.50
• Only 7% of residents receive Medicaid coverage
for assisted living.51
• Studies have shown that the delivery of home or
community-based long-term care services is a cost-effective
alternative to nursing homes. Care in the home or
community—not nursing home
care—is what most Americans would
prefer.52,53
o In 2004, the average daily rate for a private room in a skilled
nursing facility was $192 for a private room or $70,080 annually,
and $169 or $61,685 annually for a semi-private room. The hourly
rate for a home health aide was $18.12.54
o In 2000, annual cost estimates were $13,000 for adult day care
and $25,300 for assisted living.55
• Over two-thirds of the current health care
dollar goes to treating chronic illness; for older persons the
proportion rises to almost 95%.56
• The aging of the population, especially those
85+—the most in need of long-term
care—is expected to result in a tripling of
long-term care expenditures, projected to climb from $115 billion
in 1997 to $346 billion (adjusted for inflation) annually in
2040.57
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