Caregivers need more recognition

(September 18, 1998 10:37 a.m. EDT http://www.nandotimes.com) -- The millions
of men and women who stay home or alter their work schedules to care for an
ailing relative or friend are getting new respect and concern from policy-
makers and employers.

Increasingly, there is recognition that the personal sacrifices of caregivers
also impose a toll on society, and that government may need to find more
innovative ways to support their efforts.

"There is a trend to recognize caregivers more, for everybody to realize how
important they are," said former first lady Rosalynn Carter during an
appearance last week before the Senate Special Committee on Aging. She heads
several organizations involved with supporting caregivers.

On the one hand, "caring for people at home is so much less expensive than
nursing homes," said Sen. Charles Grassley, R-Iowa, chairman of the panel. He
noted that fewer than 2 million Americans are in nursing homes, while nearly
10 million are assisted by an estimated 22 million to 27 million family
caregivers.

"As a nation, they're saving us billions of dollars," added Sen. Harry Reid,
D-Nev. But the savings may be ephemeral. Peter Arno, an economists with Albert
Einstein College of Medicine in New York, told the committee his best estimate
is that caregivers provide $194 billion worth of care a year.

By contrast, the country spends about $79 billion for nursing home care and
some $30 billion for formal home health care. That's just the amount that home
health aides would have had to be paid to provide the care given by informal
caregivers.

Another study released last week suggests how much caregiving really costs the
economy. Caregiving for Alzheimer's disease patients alone costs U.S.
businesses at least $26 billion in lost productivity, absenteeism and the cost
of paying replacement workers, according to the report prepared by Ross Koppel
and colleagues of the Social Research Corp. of Wyncote, Pa., and the
University of Pennsylvania for several companies, the National Association of
Manufacturers and the Alzheimer's Association. Business contributes another $7
billion toward the total cost of care in supporting Medicare and Medicaid.

"This is probably a very low estimate," Koppel said, noting that there is
simply no data and no way to calculate many expenses associated with
Alzheimer's care. "If all the relevant factors could be measured, the actual
cost might well be two or three times higher."

He said the study underscores why businesses should support more spending on
medical research aimed at preventing and delaying the onset of Alzheimer's
disease.

According to a 1997 National Alliance for Caregiving/American Association of
Retired Persons survey, two-thirds of family caregivers work, and half report
having to make changes in their work schedule to accommodate elder caregiving,
either taking extra time off, taking a leave of absence or cutting back hours.
Moreover, caregivers report spending $2,000 a year for special food, home
modifications and clothing for the care recipient.

Another measure of the juggling that's required of working caregivers came
earlier this year from a Department of Health and Human Services team that
found employed women caregivers still average 18 hours a week but pay for or
arrange 38 hours of caregiving a week -- an amount virtually identical to that
provided by women who do not work.

Pamela Doty and colleagues used data from a 1989 long-term care survey to
study 818 pairs of care recipients and caregivers, overwhelmingly women. The
caregivers had an average age of 60 years, and about 45 percent were married
to the care recipient.

Nearly one-third of the caregivers rated their own health as fair to poor.
Another study reports that at least 15 percent of those responsible for the
care of someone over 50 in their home have health problems of their own.
Surveys show caregivers are three times more likely than the general
population to be depressed, and two or three times more likely to take
tranquilizers and other psychotropic drugs.

"Caregivers are hidden victims," says Peter Vitaliano, a University of
Washington professor of psychiatry who's been studying the effects of stress
on caregivers' health for more than a decade.

Carter recalls doing an initial survey of caregivers when setting up her
institute 11 years ago and finding more than half felt they were suffering
from burnout. "I cry, but I don't let him see me," she recalled one woman
saying. "People call and ask how he's doing, but they never ask how I'm
doing."

And numerous studies indicate that caregivers not only neglect their own
health, but seldom have money or insurance to provide long-term care for
themselves when they need it.

"The need for family caregiving is only going to increase with time, as will
the financial implications of caregiving. Unless this informal system of care
is supported, expanded and sustained though public policies, we will face a
long-term care crisis, shifting demands to both the public and private
insurance markets," said Myrl Weinberg, president of the National Health
Council, a network of health advocacy groups.

For now, most support for caregivers comes from a combination of state and
local programs, hospitals and volunteer groups that offer respite care and
training and other resources. But this patchwork approach is uneven across the
nation, with some offering comprehensive services, others almost no
assistance.

Carter's institute at Georgia Southwestern State University focuses on helping
caregivers avoid burnout and lining up help. "Educational, religious and other
institutions can establish resource centers and provide consultants or
volunteers to help family caregivers care for their disabled loved ones. They
can help establish support groups and more generally seek to increase
awareness of informal caregiving and the value of their role in society."

Among the improvements Carter and other advocates suggest from the federal
government:
----More flexible, generous time benefits for more workers under the Family
and Medical Leave Act;
----A Medicare benefit to cover respite care, allowing caregivers occasional
afternoons or weekends off.
----More information about community resources, financial planning and other
issues, supplied not only from social service agencies, but also from
employers who have an interest in supporting workers in their eldercare
efforts.

Grassley and several colleagues have also introduced legislation that would
help people who can't get long-term care insurance through their employers to
afford the coverage on their own by making premiums deductible from their
income taxes.

For more information, contact the National Alliance for Caregiving at
301-718-8444 or the American Association for Retired Persons at 800-424-3410.

by Lee Bowman for Scripps Howard News Service.
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Copyright 1998 Scripps Howard

janet paterson - 51/10 - almonte/ontario/canada
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