ROLE OF THE CAREGIVER
Most family caregivers are women (72%) who are either adult
daughters (29%) or wives (23%) of clients with cog-nitive disorders. Husbands
account for 13% of all caregiv-ers. The trend toward caring for family members
with dementia at home is largely the result of the high costs of institutional
care, dissatisfaction with institutional care, and difficulty locating suitable
placements for clients with behaviors that are sometimes disruptive and
difficult to manage. Family members identify many other reasons for becoming
primary caregivers, including the desire to recip-rocate for past assistance,
to provide love and affection, to uphold family values or loyalty, to meet duty
or obligation, and to avoid feelings of guilt.
Caregivers need to know about dementia and the required client care
as well as how client care will change as the disease progresses. Caregivers
also may be dealing with other family members who may or may not be supportive
or who may have differing expectations. Many caregivers have other demands on
their time, such as their own fami-lies, careers, and personal lives.
Caregivers must deal with their feelings of loss and grief as the health of
their loved ones continually declines (Ouldred & Bryant, 2008).
Caring for clients with dementia can be emotionally and physically
exhausting and stressful. Caregivers may need to drastically change their own
lives, such as quitting a job, to provide care. Caregivers may have young
children as well. They often feel exhausted and as if they are “on duty” 24
hours a day. Caregivers caring for parents may have difficulty “being in
charge” of their mothers or fathers (role reversal). They may feel
uncomfortable or depressed about having to bathe, feed, or change diapers for
parents.
Role strain is identified when the demands of providing care
threaten to overwhelm a caregiver. Indications of role strain include constant
fatigue that is unrelieved by rest, increased use of alcohol or other drugs,
social isolation, inattention to personal needs, and inability or
unwilling-ness to accept help from others. Caregivers may feel unappreciated by
other family members, as indicated by statements such as “No one ever asks how I am!” In some situations, role strain
can contribute to the neglect or abuse of clients with dementia .
Supporting the caregiver is an important component of providing
care at home to clients with dementia. Caregiv-ers must have an ongoing
relationship with a knowledge-able health professional; the client’s physician
can make referrals to other health care providers. Depending on the situation,
that person may be a nurse, care manager, or social worker. He or she can
provide information, support, and assistance during the time that home care is
provided. Caregivers need education about dementia and the type of care that
clients need. Caregivers should use the interven-tions previously discussed to
promote the client’s well-being, deal with deficits and limitations, and
maximize the quality of the client’s life. Because the care that clients need
changes as the dementia progresses, this education by the nurse, care manager,
or social worker is ongoing.
Caregivers need outlets for dealing with their own feel-ings.
Support groups can help them to express frustration, sadness, anger, guilt, or
ambivalence; all these feelings are common. Attending a support group regularly
also means that caregivers have time with people who understand the many
demands of caring for a family member with demen-tia.
Caregivers should be able to seek and accept assistance from other
people or agencies. Often, caregivers believe that others may not be able to
provide care as well as they do, or they say they will seek help when they
“really need it.” Caregivers must maintain their own well-being and not wait
until they are exhausted before seeking relief. Sometimes family members
disagree about care for the cli-ent. The primary caregiver may believe other family
mem-bers should volunteer to help without being asked, but other family members
may believe that the primary care-giver chose to take on the responsibility and
do not feel obligated to help out regularly. Whatever the feelings are among
family members, it is important for them all to express their feelings and
ideas and to participate in care-giving according to their own expectations.
Many families need assistance to reach this type of compromise.
Finally, caregivers need support to maintain personal lives. They
need to continue to socialize with friends and to engage in leisure activities
or hobbies rather than focus solely on the client’s care. Caregivers who are
rested, happy, and have met their own needs are better prepared to manage the
rigorous demands of the caregiver role. Most caregivers need to be reminded to
take care of themselves; this act is not selfish but really is in the client’s
best long-term interests.
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