Family and friends who help with health care
more likely to experience emotional, physical and financial difficulties
Newswise, February 21, 2016 — Unpaid
family and friends who assist older people with disabilities by coordinating
doctor appointments and managing medications are significantly more likely to
experience emotional, physical and financial difficulties than caregivers who
don’t provide this type of support, new research finds.
Johns Hopkins Bloomberg School of
Public Health researchers, reporting in the Feb. 15 JAMA Internal Medicine, say
such caregivers are also three times more likely to be less productive at work
due to distraction and/or fatigue, a phenomenon called “presenteeism,” as well
as outright absenteeism. Researchers say this shows that there is a significant
– and often unrecognized – cost borne by employers.
“A lot of work goes into managing
the care of people with complex health needs, and this work is borne not only
by health care providers and patients, but also by their families,” says
Jennifer L. Wolff, PhD, an associate professor of health policy and management
at the Bloomberg School.
“Little attention has been directed at
understanding the extent of or consequences for this unpaid and invisible
workforce that is vital to the care of the chronically ill. Our study aims to
do that.”
The study finds that in the United
States, an estimated 14.7 million unpaid caregivers, most of them family,
assist 7.7 million older adults. Of those, 6.5 million caregivers provide
substantial help with health care, 4.4 million provide some help and 3.8
million provide no help.
For their study, the researchers
examined data from 1,739 family and unpaid caregivers of 1,171 older adults
included in the 2011 National Health and Aging Trends Study.
They found that caregivers who
provide substantial help with health care activities were significantly more
likely to live with the older adult they care for than those who did not help with
these activities (61.1 percent vs. 37.6 percent), and they were also more
likely to report caregiving-related emotional difficulty (34.3 percent vs. 14.6
percent), physical difficulty (21.6 percent vs. 5.7 percent) and financial
difficulty (23 percent vs. 6.7 percent).
Caregivers who provide substantial
help with health care needs also provided care of greater intensity (28.1 hours
per week vs. 8.3 hours per week).
Wolff says the caregiver is often
the linchpin in the health care of older adults, making sure that treatment
plans developed by physicians are being carried out at home, but their role
often goes unrecognized in the fragmented American health care system.
She says that caregivers need to be
included and supported as members of the health care team and given greater
access to information about patients’ health and treatments, which is often a
challenge because of federal patient privacy laws.
Wolff says health care providers can
do a better job of involving caregivers when they accompany patients to medical
appointments, recognizing their key roles and more purposefully engaging them.
“The more we know about this
invisible workforce, the better we will be able to develop strategies that
include unpaid caregivers as part of patients’ health care team,” she says.
The study was supported by grants
from the National Institutes of Health’s National Institute of Mental Health
(K01MH082885), the National Institute on Aging (U01AG032947) and the Assistant
Secretary for Planning and Evaluation (12-233-SOL-00434).
“A National Profile of Family and
Unpaid Caregivers Who Assist Older Adults With Health Care Activities” was
written by Jennifer L. Wolff, Brenda Spillman, Vicki A. Freedman and Judith D.
Kasper.
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