FCRP Policy Statement

The health care system is evolving into an entirely new care-delivery mechanism. At the same time, the elderly population in the United States is dramatically increasing, resulting in a great many chronically ill and/or dementia-suffering elderly being cared for in the home by family members. Many patients and families, however, have not yet mentally or financially adjusted to recent health care delivery changes and are not prepared to meet the demands of care provision. It is the responsibility of physicians, legislators, and policy-makers to aid patients and families in negotiating the transitions required of the new health care system and to gain the information and skills needed to provide care.

As hospital stays become shorter and as patients are often discharged while still immobile, ill, and/or unable to care for themselves or perform activities of daily living, families are required to provide much of the care previously furnished in the institutional setting. Families face difficult care choices, perform care tasks, and manage patients' responses to treatments. It is the responsibility of health care professionals to develop cost-effective approaches to helping patients and their caregivers successfully cope with the tremendous challenges presented by the diagnosis and treatment of a chronic illness and the home care the illness necessitates.

Almost 13 million Americans require some form of care or assistance in carrying out activities of daily living (bathing, dressing, cooking, transportation, etc.). Most of the dependent elderly are cared for by a family member who may also have a chronic illness, work outside of the home, or, if the family member is the child of the care-recipient, have his or her own family to care for. Currently, the health care system disregards the health and needs of the family caregiver in the planning of long-term patient care. The patient's health status, however, may greatly depend on the care the family member is able to provide. If the family caregiver does not have the knowledge or skills required to provide care, or is frail or infirm himself or herself, the patient's health status will be adversely affected. Likewise, the family caregiver's emotional and physical health may be influenced by the care situation. Supporting the family care system and aiding caregivers to manage their role without feeling belittled or marginalized will be an important goal of health care professionals.

The stance, regulations, and offerings of corporations and policy-makers influence a family member's ability to provide care. Supporting the family caregiver benefits business, as many care providers have difficulty balancing their role as worker and their role as family care provider. Offering supportive programs and the ability to take leave to provide family care may allow the family caregiver to remain employed and to maintain productivity. Parent care is still regarded as a negative task and a burden. By legitimizing the family member's role as caregiver in the health care system and in the public policy agenda, we will legitimize family care, which will lead to healthier patients and healthier families.

Policy Implications

• Federal tax laws must be adapted to include the elderly care-recipient as a dependent.
• Local, state, and federal funds must be made available to encourage and support businesses to offer supportive programs, such as lunchtime seminars, caregiver fairs, referrals, and information handbooks to the caregivers they employ.
• Funds must be made available to businesses to create and maintain on-site adult day care centers, available to employees at a minimal cost.

Greene, V. L., & Coleman, P. D. (1995). Direct services for family caregivers: Next steps for public policy. In Family caregiving in an aging society. Thousand Oaks, CA: Sage Publications. Research supported by Family Home Care for Cancer - A Community-Based Model, Grant #NR/CA01915, funded by the National Cancer Institute (NCI), and the National Center for Nursing Research (NCNR).