Easing the Burdens of Caregiving

The problems faced by family caregivers have led to the development of new organizations, new organizational structures, and a new occupation to ease the burdens of caregiving. Two major organizations—the National Alliance for the Mentally Ill (NAMI) and the National Alliance for Caregiving (NAC)—are now devoted to family caregiving. Both organizations work to increase assistance to family caregivers and improve access to community-based care, and NAMI also fights to decrease the stigma of severe mental illness.

Both respite care and family leave programs also were developed to ease the burdens of caregivers. The term respite care refers to any system designed to give caregivers a break from their otherwise unrelenting responsibilities, including paid aides who provide care in the home for a few hours, daycare centers for elderly and disabled adults, and nursing homes that accept clients for brief stays. Unfor- tunately, only California and Pennsylvania fund respite care programs. In all other states, respite care is expensive and difficult to find; only 15% of those included in the NAC and AARP survey had ever used respite care. Minimal data are available on the quality of these services.

Similarly, although federal law gives employees the right to as many as 12 weeks of unpaid leave from work yearly to care for family members, few can afford to take unpaid leaves. In addition, the law does not apply to part-time work- ers, temporary workers, or employees of small firms. The law is also problematic because it reinforces the idea that caring for ill and disabled persons is the respon- sibility of the family—which, in practice, usually means women relatives—rather than the responsibility of society as a whole.

Finally, those who provide care to relatives or friends may turn for assistance to paid caregivers with bathing, dressing, light housework, and other basic tasks. Most paid home care is provided by home health aides, who typically have no formal training, or registered nurses, who have received at least two years of nursing training and passed national licensure requirements. Aides are over- whelmingly minorities and women, and they are highly likely to be immigrants. Few receive any job benefits, and most receive only minimum wage. Because the growth in paid home health care is so new, little more is known regarding these workers or their work.