Independent living for a million adults jeopardized by a shortfall of a few hours of help

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More than 3 million people in the U.S. need help from another
person to live independently and many of them face going hungry, falling
or other problems that increase the risk of institutionalization and death,
according to a new study published by the Journal of Gerontology.


The study
by researchers at the Disability Statistics Center at the University of
California at San Francisco describes how well adults with long term care
needs who are living in houses or apartments in the community rather than
in nursing homes are doing. Such individuals need assistance from another
person in activities of daily living (ADL) that are essential for their
survival, including bathing, dressing, getting into or out of bed or a
chair, toileting, and eating and other activities that are necessary to
maintain their homes, such as shopping and preparing meals. The study,
funded by the National Institute on Disability and Rehabilitation Research,
is the first to estimate how many additional hours of help people need.


Most of
these adults receive some help, but not enough to fill their unmet needs.
Individuals with unmet need for personal assistance with two or more of
the five basic ADLs have a shortfall of 16.6 hours of help per week compared
with those whose needs are met, said lead author Mitchell P. LaPlante.


Having
unmet needs with ADLs is linked with numerous adverse consequences, especially
for people who live alone. Those with unmet need are 10 times as likely
to go hungry because no one is available to help them eat as those whose
needs are met (24.5 versus 2.1 percent), 20 times more likely to miss
a meal because of lack of help with shopping (15.3 versus 0.7 percent),
5 times as likely to lose weight unintentionally (52.2 versus 10.0 percent),
and almost three times as likely to fall because no one was around to
prevent their falling (64.5 versus 24.5 percent). As a result, these people
are at risk of being forced to leave their homes and move into institutions,
such as nursing homes.


Among adults
whose assistance needs are not fully met, people living alone fare worse
than those who live with others. Those living by themselves receive only
56 percent of the help they need, while those living with family members
or friends receive 80 percent of the hours of help they need.


The shortfall
is twice as great for persons who live along as for those who live with
others, the researchers found. People who live alone and have unmet needs
fare worse than people with unmet needs who live with others, and both
groups are more likely than those whose needs are met to experience adverse
consequences.


The causes
of unmet need are many. Informal helpers, such as family and friends,
may have to balance other responsibilities that limit the amount of help
they can provide. People without informal help depend largely on formal
assistance, if affordable and available. Such public help remains biased
toward institutional living.


Working-age
adults account for half the prevalence of met and unmet need among those
needing help in two or more ADLs. The researchers analyzed the working-age
population separately and found that the relative shortfall in needed
hours was somewhat smaller than for all ages combined (18 versus 23 percent).
However, unmet need among people living alone is more an issue for the
elderly, because two-thirds of those living alone and needing more help
are age 65 or older.


Access
to paid help is critical for people who live alone because they are much
more likely to receive paid help than are people who live with others
(62 versus 24 percent). Of people who live alone, those whose needs are
met are more likely than those whose needs are unmet to get paid help
(70.2 versus 50.3 percent). More than half of that help is reported to
be paid by Medicare or Medicaid.


Thus, the
study found, expanding access to paid PAS appears crucial in reducing
unmet need among those who live alone. If the estimated shortfall in hours
were to be provided through public funds, the cost of eliminating unmet
need among people who live alone with low income ranges from $1.2 to $2.7
billion, a relatively small amount. However, the cost for people who live
with others is almost twice as large, from $2.2 to $7.1 billion.


On the
positive side, the study finds that 93 percent of the need for assistance
is being met, largely by family members and friends. Dr. LaPlante and
co-authors Drs. H. Stephen Kaye, Taewoon Kang, and Charlene Harrington
report that previous research, by looking only at the prevalence of unmet
need for PAS, creates a false impression that unmet need is a large and
costly problem to resolve. In fact, only 6.6 percent of all needed hours
of help are unmet among adults needing help in two or more ADLs.


Dr. LaPlante
believes that even a modest amount of unmet need can jeopardize a person
s ability to live independently. Unmet need likely increases the chances
of an individual being prematurely institutionalized or being hospitalized,
and reduces an individual s participation in society. These are large
costs that, if avoided, would offset the cost of providing the additional
help that is indicated. The reduction, if not the elimination, of unmet
need for help is a financially achievable goal for the nation and one
that long-term policy should focus on.


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