Caregiver stress: When helpers need help
A study published in the
New England Journal of Medicine
(February 16, 2006; Vol. 354, pp. 719–30) has
called attention to the stress that results from
caring for family members with medical and
psychiatric illnesses. The evidence comes from
an unusually large sample — nine years of
Medicare records for a half-million couples over
age 65. Researchers at Harvard Medical School
and the University of Pennsylvania found that in
the months and years after a wife or husband was
hospitalized (often a sign of severe illness),
the risk of death for a caregiving spouse rose.
In some situations, having an ill partner was as
risky as losing a spouse.
The danger was greatest in the first months
after hospitalization, declined for six to nine
months, then began to climb again. The authors
of the article theorize that the effects of
stress accumulate when caregivers lose social,
emotional, economic, or practical support — and
especially when, as is common, they have health
problems of their own. Apart from the direct
health effects of stress, they may also stop
taking care of their own medical and nutritional
needs, or fall back on maladaptive ways of
coping such as excessive drinking.
The more disabled or debilitated a wife or
husband was, the greater the risk to the
caregiver. Cancer, for example, was less
stressful than a hip fracture, which usually
demands more direct physical care and interferes
more with everyday activities.
The risk of death was greatest of all for people
caring for a husband or wife with dementia or a
psychiatric disorder. This result confirms what
other studies have suggested. In their stress
hormone levels, caregivers for people with
dementia resemble severely depressed patients.
Their lymphocytes — blood cells in the immune
system — become less active, and their risk for
high blood pressure and heart disease rises.
They often have high levels of depression,
anxiety, and anger. Even their intellectual
functioning may decline.
An Italian study found that the average
caregiver devoted three-fourths of his or — more
commonly — her time to a patient with dementia.
At the end stage, caregivers might have as
little as two hours a week of free time. So
their low quality of life is not surprising.
The families of people with severe and chronic
mental illness undergo similar stress. Often a
spouse is the only person available to
compensate for the patient’s limitations,
provide emotional support, and cope with
unmanageable behavior. Psychiatric illnesses may
also carry an extra burden of shame and stigma
for the family.
The evidence in the
New England Journal of Medicine
study should help policymakers push for changes
in the health care system. But it will take time
to find out which approaches are most effective.
Certainly caregivers, especially seniors with
low incomes, would benefit from a greater
availability of home health aides, visiting
nurses, and social workers to provide practical
support, ongoing education, encouragement, and
help in solving practical problems. Caregivers
may be less stressed if they understand the
disease better or learn routines or strategies
to cope with predictable problems. Health aides
can provide respite from burdensome physical
tasks like bathing, toileting, and dressing.
Social workers may help the caregiver locate
community resources and support networks, or
advocate for services.
Equally important, caregivers must be able to
take care of themselves. Some researchers have
begun exploring whether such approaches as
stress management, meditation, or yoga can
reduce the burden and therefore the risk. A
caregiver’s depression or other psychiatric
symptoms should, of course, be evaluated and
treated. This study may focus attention on all
these ways of providing more help for the