Exhaustion, anger of caregiving get a name
By Andree LeRoy, M.D.
Special to CNN
*BOSTON, Massachusetts (CNN)* -- Do you take care of someone in your
family with a chronic medical illness or dementia? Have you felt
depression, anger or guilt? Has your health deteriorated since taking on
the responsibility of caregiving? If your answer is yes to any one of
these, you may be suffering from caregiver stress.
This condition is increasingly being referred to as "caregiver syndrome"
by the medical community because of its numerous consistent signs and
symptoms. In the pamphlet, "Caring for Persons with Dementia," Dr. Jean
Posner, a neuropsychiatrist in Baltimore, Maryland, referred to
caregiver syndrome as, "a debilitating condition brought on by
unrelieved, constant caring for a person with a chronic illness or
dementia."
An increasing number of Americans are finding themselves taking care of
someone who's aging or ill or both. According to the American Academy of
Geriatric Psychiatrists, one out of every four American families cares
for someone over the age of 50. As America's population ages, that
number is expected to skyrocket. In 2000, the Census Bureau reported,
just under 35 million Americans were 65 or over; by 2030, the number is
projected to more than double, to more than 71 million.
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Many exhausted, ill caregivers today don't seek help because they don't
realize that they have a recognizable condition. According to a report
from the National Consensus Development Conference on Caregiving, the
most common psychological symptoms of caregiver syndrome are depression,
anxiety and anger. Peter Vitaliano, a professor of geriatric psychiatry
at the University of Washington and an expert on caregiving, said that
the chronic stress of caring for someone can lead to high blood
pressure, diabetes and a compromised immune system. In severe cases,
caregivers can take on the symptoms of the person that they care for, he
said. For example, a person caring for someone with dementia may develop
progressive memory loss. Worse still, this syndrome can lead to death.
Elderly caregivers are at a 63 percent higher risk of mortality than
noncaregivers in the same age group, according to a study by University
of Pittsburgh researchers Richard Schulz and Scott Beach reported in the
Journal of the American Medical Association in December 1999.
Vitaliano suggests that the physical symptoms are a result of a
prolonged and elevated level of stress hormones circulating in the body.
He likened exhausted caregivers' stress hormone levels to those
suffering from post traumatic stress disorder.
Caregivers are usually so immersed in their role that they neglect their
own care, said Vitaliano. The stress is not only related to the daunting
work of caregiving, but also the grief associated with the decline in
the health of their loved ones. The majority of caregivers go through a
period of shock followed by a major adjustment in their roles. Such
emotions are reflected in online discussions among caregivers such as
one at the Alzheimer's Association Online Community. A number of spouses
described their role slowly evolving from partnership into a
nurse-patient relationship. The caregivers described the difficulty of
the change and talked about feeling anger, resentment and guilt. They
also suggested that in such an emotional state, it's difficult to
provide high-quality care to their loved ones.
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Physicians, too, are not always certain how to approach the issues
raised by long-term caregiving. Although the term "caregiver syndrome"
is widely used among allied health professionals such as hospice workers
and nursing home assistants, the syndrome is not yet recognized in
American medical literature. Without that official validation, it's not
surprising that this problem is not addressed more by physicians. A
survey in the American Academy of Family Physicians found that fewer
than half of caregivers were asked by their doctors whether they had
caregiver stress. Vitaliano believes that more research should be done
to help spread awareness.
But Vitaliano isn't sure giving caregiver syndrome the status of an
official diagnosis would be a good thing. He argues that if "caregiver
syndrome" were listed in the Diagnostic and Statistical Manual of Mental
Disorders (a text published by the American Psychiatric Association that
defines all mental health disorders) it could stigmatize those that have
it. "Caregiver stress is directly related to the way our society views
the elderly and the people who care for them,"Vitaliano says. Today,
caregiving is viewed largely as a burden in this county. If it were
viewed as more of a societal expectation and people were willing to
offer more support, fewer caregivers would suffer in isolation, he says.
Others think giving caregiver syndrome an official name would be
helpful. Kathryn Anderson, a researcher in families and chronic illness
at Florida International University, argues that caregiver stress should
be named a syndrome because it would help caregivers seek the help and
resources they need. Naming it a syndrome would encourage health
professionals to develop better treatment strategies and require health
insurers to pay for treatment, she believes.
For now, the American Academy of Family Physicians and the National
Center on Caregiving call for every caregiver to be screened for stress
and depression. Caregivers who show signs of hostility, anxiety and a
loss of interest in activities they used to enjoy are urged to talk to
their doctors.
Experts agree that expanding the caregiver support system, finding
sources of help for caregiver tasks and educating caregivers can
significantly decrease the occurrence of this syndrome.
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