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Caregiving: An Urgent Social Issue Receives Mailman School Attention

The numbers speak for themselves. By 2015, about 14 percent of the U.S. population will be 65 and older; by 2050, more than 20 percent will be in this category.
   Who will care for the growing numbers of elderly and ill? Increasingly, it will be adult children, according to Victoria Raveis, associate professor of clinical sociomedical sciences at the Mailman School and co-director of its Center for the Psychosocial Study of Health and Illness. It is now estimated that family members provide 75 percent to 80 percent of long-term, home and community-based care for the elderly. As a consequence of increased longevity, adult children may spend more years raising an elderly relative than a child. Dr. Raveis’s research contributes to the growing awareness on a national leadership level of the importance of family caregivers and the need for caregiver-focused programs and services. With funding from the National Cancer Institute’s Office of Cancer Survivorship, she is assessing the effectiveness of a family caregiver education and support program designed to improve the quality of care and life of older minority cancer survivors.
   InVivo spoke with Dr. Raveis about the challenges caregiving presents to individuals and about steps we as a society can take to ease the burden.

Can you describe an average caregiver?
Usually a married woman in her mid 40s, with children, employed outside the home. She has been providing care to a parent for about four or more years.

What do caregivers do?
Elder care activities can include assistance with personal care tasks (dressing, walking, bathing, personal hygiene); household tasks (cooking, cleaning, shopping); transportation (to medical appointments or other purposes); home medical care tasks (keeping track of medication, changing dressings and maintaining special equipment); handling paperwork and bills; overseeing medical treatment; coordinating home care and contributing financially to a parent’s expenses.

How are caregivers affected?
My work and others’ have found that providing informal support and assistance to an aging parent can impact adversely on the caregiver’s everyday life, impose strains on the broader family system and require major lifestyle changes.
   Caregiving often competes with the day-to-day responsibilities in the caregiver’s own life. They may spend from a few hours a week to more than 12 hours, daily, involved in care. To meet care demands, caregivers usually cut back on vacations, hobbies and seeing friends. Caregiving challenges one’s ability to balance the needs of the elderly parent with those of other family members, causing guilt and depression for not devoting adequate time to spouse and children. Physical burdens can manifest in chronic fatigue and deterioration of the caregiver’s health. There are also employment and financial burdens: Caregivers may use up vacation, sick and personal time or have to quit their jobs altogether.

Are there benefits as well?
Even with all the challenges and personal costs, most adult children are committed to caring for elderly parents. They love their parents and have a sense of responsibility to care for those who cared for them. Many also find the caregiving role personally fulfilling and feel they gain valuable knowledge from the experience.

What do caregivers need?
There’s no magic bullet to make all the challenges disappear, but the caregiver’s needs can be summarized under what I call the three R’s: Resources, Respite and Recognition. Resources refers to caregivers’ need for information, education, training and case management; respite is time away from care demands; and recognition refers to being aware of costs in terms of lifestyle, finances, and health.
   Laws have been enacted to help families manage demands, such as the Family and Medical Leave Act, which enables employees to take a leave to care for family members. Employer assistance programs, flex-time and other workplace accommodations also help caregivers. Still, although there is growing recognition of the contribution caregivers make and the personal costs involved, less attention is paid to helping them recoup financial losses and ease lifestyle burdens.
   The challenges adult children face today in caring for their parents are complex. Care and support from other family members and friends, formal care systems, community-based programs and services and workplace arrangements can support families as they seek to provide this vital care.