Backgrounder: Family Caregiving in America

Although caregiving is nothing new to American culture, its significance for the delivery of healthcare in this country is greater than ever before. Already, it is estimated that family caregivers provide unpaid services valued at $306 billion a year, an amount comparable to Medicare spending in 2004. And although these individuals are usually untrained for the tasks they perform, family and friends now provide about 80 percent of all long-term care services in this country.

The following provides a look at the many factors that have led to a growing need for family caregiving in the U.S.

New Challenges for Family Caregiving

Adult family members and friends are viewed as an unpaid extension of the health care system, providing an estimated 80 percent of all long-term care services in the U.S. But these contributions often come at a significant price for these individuals. According to a large and growing body of scientific literature, the economic, emotional and physical impact of family caregiving can be substantial.

In terms of the financial burden, research by the Metlife Mature Market Institute found that over the course of a caregiving “career,” family caregivers who provide intense personal care can lose as much as $659,000 in wages, pensions, and Social Security. And caregivers are not the only ones who pay the price. According to a 1997 study by the Metropolitan Life Insurance Company, American businesses lose between $11 billion and $29 billion a year in reduced productivity costs related to caregiving responsibilities. This includes workplace disruptions, scheduled and unscheduled absences, leave of absences, reduction from full- to part-time work, opting for early retirement, and leaving work entirely to care for a loved one.

Of added concern is what public health officials call the “caregiver burden,” which is defined as the state of physical, emotional and mental exhaustion resulting from the intense demands of caregiving. According to scientific studies, caregiving is associated with an increase in mortality in addition to a general decline in the overall health status of the caregiver. Research links the stress of caregiving with an increased risk of depression, anxiety disorders, diminished immune responses, slower wound healing, and a greater incidence of hospitalizations.

Empowering the Caregiver

According to extensive research, a major reason for the physical and emotional toll of caregiving is that caregivers are not prepared for the many responsibilities they face. This is a key finding of the 2005 survey commissioned by Johnson & Johnson Consumer Products Company, which reveals that many adult Americans admit to being ill-prepared to handle many of the tasks associated with being a family caregiver. At the same time, research finds that many family caregivers do not identify themselves as such, which significantly adds to their “caregiver burden.” These individuals typically do not seek assistance for themselves and, therefore, become isolated, frustrated and tired, which puts added strain on their physical and mental health.

To change this situation, a number of leading medical societies have responded with new practice guidelines designed to identify caregivers who display symptoms of depression and anxiety. Specifically, both the American Psychiatric Association and the American Academy of Neurology have issued guidelines for assessing the needs of caregivers who accompany a patient needing medical treatment. In addition, the American Academy of Family Physicians has issued “ A Practical Guide to Caring for Caregivers,” which describes caregivers as “hidden patients” and provides screening tools for assessing the caregiver's “burden.”

Complementing these practice guidelines for physicians, the National Family Caregivers Association and the National Alliance for Caregiving are working to get more family caregivers to identify themselves as playing this role so they can get the help they need. This requires defining for the public the essential activities caregivers provide, such as:

• The “Activities of Daily Living” (ADL), which include helping the care recipient with getting in and out of beds and chairs, dressing, getting to and from the toilet, bathing, dealing with incontinence or diapers, and feeding; and

• The “Instrumental Activities of Daily Living” (IADL), such as providing transportation, doing housework, going grocery shopping, preparing meals, arranging for outside services, managing finances, and giving medications.

At the same time, Johnson & Johnson Consumer Products Company has joined with leading caregiving organizations, academic centers, and foundations to launch The Caregiver Initiative, a national campaign targeting the estimated 46 million Americans who are now caring for an adult family member or friend. Coming at a time when the need for family caregivers is only expected to grow, the campaign has a simple goal: to provide support to caregivers while providing the best information now available about the range of challenges they face.

Towards this end, the campaign features a new Web site --www.strengthforcaring.com -- providing a repository of the best information and support developed by leading caregiving experts, professional societies, government agencies, and family caregivers themselves. Designed to help caregivers learn to reduce their own stress, the Web site includes information about the symptoms of caregiver burnout, which include fatigue, difficulty sleeping, prolonged feelings of sadness, feelings of helplessness, an escalation in job-family conflicts, and the disruption of personal relationships. The Web site also provides detailed information so that caregivers can take the steps to care for themselves as well as their loved ones.