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.