Caregivers are a critical resource for older persons with disabilities and chronic illnesses. Almost all older persons with some type of activity of daily living (ADL) or instrumental activity of daily living (IADL) impairment who live in community settings (about 95 percent) receive at least some assistance from relatives, friends, and neighbors.1 Two of every three older persons with some type of ADL or IADL impairment who live in noninstitutionalized settings (67 percent) rely solely on informal help, primarily from wives or adult daughters.1 Families have been, and continue to be, both the "major coordinators and the providers of everyday long term care."2
A number of factors are shifting the cost and responsibility for post-acute and long-term care (LTC) for older persons to the informal care system. They include (1) changes in the health care delivery financing system that have led to shorter hospital stays,2, 3 (2) the high cost of nursing home care, (3) a preference for home care over institutional care, and (4) the increasing shortage of paraprofessional workers in all LTC settings.2, 4 All of these factors contribute to the increasing likelihood that frail, disabled, and ill older relatives will be cared for at home.
During the next few decades, as the number of older persons needing assistance to remain independent increases dramatically, the burden and cost of providing care to an ill or disabled relative will affect almost every U.S. household.5, 6
There is general agreement that caring for an older individual with a disability or chronic illness is burdensome and stressful to many family members and contributes to psychiatric and physical morbidity.7, 8, 9 Researchers have suggested that the combination of loss, prolonged distress, the physical demands of caregiving, and biological vulnerabilities of older caregivers may compromise their physiological functioning and increase their risk for physical health problems, leading to increased mortality.9
The potentially negative physical and emotional effects of caregiving were recently highlighted in the Caregiver Health Effects Study, which found that family caregiving accompanied by emotional strain was an independent risk factor for mortality among older adults.9 Data from this study and others have shown that caregivers are less likely than peers of the same age to engage in health-promoting behaviors that are important for chronic disease prevention and control.10, 11, 12, 13, 14
These findings suggest a pressing need for effective methods to encourage caregivers to engage in activities that will benefit their own health and well-being. Such activities include improved nutritional intake, increased physical activity and exercise, maintenance of a healthy weight, and the reduction of behaviors that increase risk of illness such as use of tobacco or abuse of alcohol.
Although many projects and initiatives focused on these activities have been implemented over the years, no single source provides an inventory of them or guidance for government agencies or private sector entities about which programs seem the most promising and may merit promotion or expansion.
The Office of the Assistant Secretary for Planning and Evaluation (ASPE) has recently initiated the Health Promotion and Aging Project. An important component of this project is the development of such an inventory of health promotion, disease prevention, and health education activities targeted at informal caregivers for the Department of Health and Human Services (hereafter, the Department). ASPE has engaged RTI International to provide an initial inventory of such projects. The specific focus of this report is to highlight some state and local initiatives that have developed promising programs to support, educate, and motivate caregivers of persons age 60 and older to maintain and improve their health and functioning.