Caregiving Stress In Alzheimer's Disease
Please click on one of the subjects below for more information.
- How Caregiver Stress Is Measured
- Negative Effects Of Caregiving
- Health Effects of Caregiving
HOW CAREGIVER STRESS IS
Caregiver stress has been exhaustively studied.
Researchers use the term "caregiver burden" to describe
this type of stress. Various tests have been designed to measure caregiver
burden. The test discussed here is the Zarit Burden Interview (ZBI), designed by
Professor Steven Zarit. The Zarit Burden Interview is one of the most widely
used tests of caregiving burden. It is simple to use and score. If you receive a
high score on the test, you may be at risk for the physical complications of
caregiver stress. You can learn more about the Zarit
Burden Interview, online, at this site:
Many factors influence the amount of caregiving
burden felt. Caregivers who live with the one they care for have the highest
burden scores. Caregivers with a loved one in a nursing home also have very high
burden scores. Caregivers living away from their patient have the lowest burden
In general, wives who are caregivers, tend to
have higher burden scores than caregiver husbands. Daughters living with a
patient for whom they provide care have the highest burden scores of all. The
lowest burden scores are experienced by husbands with wives in a nursing home
and by daughters with a patient who lives elsewhere.
Emotional and physical factors contribute to caregiving burden. Angry and
resentful caregivers always report feeling more burdened than those not
expressing anger. Caregivers who have previously provided care for other people
feel less caregiver burden. Caregivers who themselves are in ill health, report
higher perceived burden.
Caregiver stress is also
influenced by the attitudes of the caregiver toward the care recipient.
Caregivers who attribute a patient's troubling behaviors to the patient's
illness are less burdened than caregivers who attribute the patient's behavior
to patient willfulness . Caregivers who see the patient as "emotionally
demanding" or "dependent" feel a higher sense of burden than those who see the
patient as "disturbed" or disabled". Caregivers caring for very forgetful
patients perceive their burden as being higher than caregivers who care for
patients with mild forgetfulness.
The behaviors and
attitudes expressed by the care recipient can influence caregiver stress. One
study found that caregiver burden is increased in 63% of caregivers when
patients constantly ask the caregiver questions. Some Alzheimer patients have
the need to always be physically near the caregiver. In this type of situation,
40% of caregivers are burdened by the constant clinging of their patient. One
study revealed which patient behaviors increase the sense of caregiver burden
most often. The study reported that 67% of caregivers reported that the
following stressors occurred almost daily: patient confusion, patient
aggression, and finally, nighttime wandering.
reduce caregiver stress and burden in varied ways. Humor seems to help lighten
the burden for caregivers when these stressors occur. One study found that how
caregivers view a stressor may help to modify the amount of burden felt. Men and
women who said during an interview, "I look for the silver lining," or "I count
my blessings and appreciate what my spouse can still do" had less overall
feelings of burden. Some caregivers reduce their burden by "trying to make sense
of the illness" by relying on religious or philosophical beliefs. Those
caregivers who experienced the highest burden were the ones who use "wishful
thinking" such as believing that a miracle could happen to change the
Jarrett found that how couples related prior to
dementia diagnosis determines later perceptions of caregiver burden. Those women
and men who had been very affectionate with their spouse prior to the onset of
dementia experienced less burden and less feelings of depression.
NEGATIVE EFFECTS OF CAREGIVING STRESS
Providing care to an alzheimer patient is
extraordinarily stressful. The results of stress can affect caregivers in many
ways. Some caregivers find their physical and mental well being under attack.
Anxiety, depression, a diminished social life, loss of self-esteem, and a
decline in job performance are some of the problems alzheimer caregivers find
themselves struggling with.
Caregivers generally experience
two types of stress - primary and secondary. Primary stress is the stress felt
from everyday caregiving duties. Secondary stress comes from sources other than
direct caregiving duties. Some causes of primary caregiver stress include:
planning and implementing daily care for the patient, restraining the patient
for safety reasons, assisting the patient with bathing and toileting,and
managing difficult patient behavior such as agitation and wandering. Some causes
of secondary caregiver stress include: caregiver conflicts with other family
members, economic hardships such as lost work wages, and limitations on personal
leisure and social activities.
Caregiving stress directly
affects the health of caregivers. When caregivers are asked to rate to what
degree the stress of caregiving has affected their health, close to 25% report
that their health has suffered in some way as a result of their caregiving role.
Interestingly, caregivers seem to spend less time in doctors' offices than
non-caregivers. Data from the National Center for Health Statistics shows:
caregivers average 4 doctor visits per year, while non-caregivers average 7
doctor visits per year. Male and female caregivers report about the same number
of doctor visits yearly.
Many caregivers feel anxious and
depressed. Caregivers report more feelings of anxiety than non-caregivers. About
one-third of all caregivers report some level of anxiety. Dee Jones studied wife
and daughter caregivers. She found anxiety much more prevalent among daughter
caregivers. This may occur because daughter caregivers have the combined
stresses of maintaining their own family and working either full or part time
while trying to care for an aged parent.
depression can become a serious problem for some caregivers. Ironically, many of
those caregivers with the most severe depression do not know or recognize that
they are depressed. Consequently, they often do not seek medical help for their
Caregivers are also stressed by restrictions on
their social life. The caregiving experience often affects the social structure
and activities of the family. Dee Jones studied how caregiving changes the
family. More than 16% of caregivers say that caregiving has definitely impacted
family integrity. (Integrity in this study was defined as being relatively free
of conflict and turmoil.) Many daughters reported that they were unable to go
out in the evening with their husbands because they were caring for a demented
parent. Many daughters resented the lack of privacy brought about by the care of
a demented parent.
Caregiving also places limits on the
caregiver's social life. More than 60% of caregivers say that socializing and
participating in hobbies are curtailed by caregiving . Caregivers living with an
Alzheimer patient have an even more restricted social life than those who do not
live with the patient. For example, spouses who take care of an Alzheimer
patient report that they: have fewer visits from friends and family, spend less
time chatting on the telephone, spend less time in their house of worship, spend
less time with their hobbies, and vacations often suffer for caregivers as
Caregivers also suffer disruption of their
employment. More than 11% of caregivers quit their jobs to care for a parent at
home. Hours worked are reduced by 3%. Time off from work is required by 8% of
caregivers to perform caregiving chores.
tend to develop negative health behaviors, such as smoking,not exercising,and
overeating. One study looked at exercise patterns of caregivers. Only 41% of
caregivers perform vigorous aerobic exercise weekly, compared to 65% of
non-caregivers. Caregivers also tend to limit their exercise sessions to a
shorter amount of time per session. Caregivers average 1.4 hours of exercise
each week as compared to non-caregivers who average 3.6 hours of exercise each
week. Regular exercise helps to reduce stress. Caregivers who exercise regularly
have less depression, less anxiety, less anger, less perceived stress, and
generally have lower blood pressure than caregivers who do not
HEALTH EFFECTS OF CAREGIVING
Surprisingly, alzheimer caregivers
seem to maintain their health fairly well despite the enormous stress they work
under. However, the strain of caregiving can aggravate certain diseases.
Additionally, about 12% of caregivers become physically ill or injured as a
result of caregiving.
Caregivers of dementia patients tend
to develop diabetes, anemia, ulcers, and hypertension. In particular, alzheimer
caregivers are especially vulnerable to insomnia, diabetes, and hypertension.
Caregivers of dementia patients tend to have more bad dreams, heart
palpations,headaches,and excessive perspiration than non-caregivers. Females
seem especially prone to these symptoms .
to drink alcohol more often than non-caregivers. They also tend to use more
psychotropic drugs such as those that induce sleep or relaxation. About 30% of
caregivers use psychotropic drugs, compared to 20% of non-caregivers . A note of
caution: A problem arises for stressed caregivers when they accidentally combine
alcohol with a relaxant drug. Combining drugs with alcohol is dangerous and
should be avoided.
Caregiving affects sleep patterns.
Caregivers sleep a bit less than non-caregivers. In one study , caregivers
reported 22.4 hours of sleep every three days. Non-caregivers reported about
23.7 hours of sleep every three days. Although the number of hours spent
sleeping is not dramatically different between caregivers and non-caregivers,
the quality of sleep may be less for caregivers. As noted previously, caregivers
use relaxant and sleep-inducing drugs more often than non-caregivers.
Drug-induced sleep is not as nourishing to the body as sleep that comes
Weight gain can be a problem for caregivers.
Some female caregivers are prone to weight gain. A major study finds that women
who care for alzheimer patients tend to gain weight, but only if they are unable
to control their anger. Women caregivers who find effective ways to control
their anger do not gain weight.
Diabetes can be aggravated
by the stress of caregiving. During periods of stress, especially in diabetics,
high levels of insulin are present in the bloodstream. Insulin normally binds to
cells and increases the entry of sugar inside cells where it is used for fuel.
Thus, insulin that floats in the bloodstream during stress is less efficient.
Female alzheimer caregivers who report both a high number of caregiving
"hassles" and who feel anger and hostility have higher insulin levels in their
bloodstream. Male caregivers often have elevated blood insulin with a high
number of daily caregiving hassles. But feelings of anger do not seem to raise
insulin levels as much as in female caregivers. These findings indicate that
diabetic caregivers,more than other caregivers, need to find a way to release
stress and stay as calm as possible. They should especially try to avoid getting
Wound healing is affected by the stress of
caregiving. One study found that wounds, such as cuts, take 24% longer to heal
in alzheimer caregivers than in non-caregivers.
immune system is weakened by caregiver stress. The main defenders in our immune
system are lymphocytes and natural killer cells. Natural killer cells are
particularly important to ward off viruses. Stress can lower the activity of
natural killer cells. Studies also show that alzheimer caregivers have lower
natural killer cell activity. Consequently, caregivers are more prone to colds
and infections because of deficient immune responses. Not all caregivers have
lowered immune activities. It appears that alzheimer caregivers who have more
social contacts seem to have more efficient immune system functioning . Thus, it
is important for caregivers to maintain family and friends and talk problems out
in a support group, in order to maintain optimum immune system