Caregiving
for those at end of life rewarding despite
challenges
Newswise — Family or friends served as informal
caregivers to almost three-quarters of disabled
older adults living in the community during their
final year of life, according to an article in the
January 8 issue of Archives of Internal Medicine,
one of the JAMA/Archives journals.
More than two-thirds of these caregivers found their
role rewarding despite providing more than 40 hours
of care per week and making little use of
caregiver-focused supportive services.
Family and friends serve as the main providers of
care for patients with long-term disabilities and
those at the end of life, according to background
information in the article.
Studies have found that
these caregivers provide high levels of assistance
and often experience associated emotional, physical
and financial strains. It is recognized that these
individuals also derive rewards from their caregiving role, but this concept has been little
explored in research.
Jennifer L. Wolff, Ph.D., and colleagues at the
Johns Hopkins Bloomberg School of Public Health,
Baltimore, assessed the dynamics of providing care
among 1,149 caregivers who participated in a
national survey. The participants and the older
adults for whom they provided care completed surveys
in 1999. Investigators then monitored the pairs to
determine if the older patient died within 12
months. Of the 1,149 caregivers who participated,
182 cared for a person who then died within one
year, and 967 for a person who did not.
Among the 11.2 percent of disabled,
community-dwelling older adults who died within one
year of being interviewed, 72.3 percent were
receiving help from an informal caregiver (compared
with 48.6 percent of older adults who did not die
within one year). Among the caregivers of adults in
the last year of life, 41.5 percent were spouses, 39
percent were children and 19.5 percent were other
family members or friends; 75.1 percent of them were
female, and they had an average age of 64 years.
They provided an average of 43 hours of care per
week, and 84.4 percent of them provided daily
assistance.
Less than 5 percent of caregivers used respite care
(in which a temporary caregiver provides a break by
caring for the ill individual) or caregiving support
groups, while 62.3 percent reported using assistive
devices, 37.2 percent used personal or nursing care
services and 28.3 percent used home
modifications—all interventions designed to help the
disabled or ill older adult.
“While end-of-life caregivers reported significant
emotional (28.9 percent), physical (18.4 percent)
and financial (14 percent) strains, more than
two-thirds endorsed personal rewards related to
their helping role,” the authors write. About 70
percent agreed that their role “makes me feel good
about myself” and “enables me to appreciate life
more,” and 76 percent said they felt useful and
needed. Many also identified benefits they received
from the person for whom they were caring; 65
percent reported that the person kept them company,
26 percent said that they helped financially and
20.8 percent said that they helped with household
chores.
“Seriously ill patients have expressed the
importance of ongoing daily interactions with family
and friends, and the ability to help others as
components of a good death,” the authors conclude.
“Data from this study indicate that primary
caregivers were readily able to identify
reciprocated emotional, instrumental and financial
exchanges afforded to them by the person to whom
they provided assistance.”
