Today, more than three-quarters of adults who live in the community and need long-term care depend on family and friends as their only source of assistance with activities of daily living (such as bathing, dressing, and eating) or instrumental activities of daily living (such as transportation and managing finances).1 Research suggests that the more than 33 million caregivers who provide help to someone age 50 or older2 often assume these responsibilities for a relative, partner, or friend with little preparation for the role and little ongoing support. The results frequently are poor physical and mental health for the caregiver and preventable institutionalization for her or his loved one. A 2008 Institute of Medicine report, Retooling for an Aging America: Building the Health Care Workforce, emphasizes the need to prepare professionals, paraprofessionals, and informal family caregivers for an older U.S. population.3
Social workers and nurses are at the forefront of interacting with and providing support to family caregivers. In order to prepare current and future professionals in these fields, the AARP Foundation, together with the American Journal of Nursing, the Council on Social Work Education, the Family Caregiver Alliance, and the Rutgers Center for State Health Policy, received funding from the John A. Hartford Foundation and the Jacob and Valeria Langeloth Foundation for an interdisciplinary project on family caregiving for older adults. This project aims to bring together experts to advance family caregiving by identifying additional and further developing existing best practices in nursing and social work to help families care for older adults. The project will begin to lay the groundwork for producing a cadre of nurses and social workers who embrace a patient- and family-centered care perspective. The professionals will partner with families in new ways to:
- improve families' ability to better manage their everyday care responsibilities, reduce their own burdens and health risks, and promote a better quality of life for both the older adults receiving care and the family members providing it
- improve professionals' ability to assess the needs of family, friend, and neighbor caregivers; provide caregivers with the information and skills needed to deliver care; and lead in the development of family-friendly policies, practices, and environments across health care settings.
THE INVITATIONAL SYMPOSIUM
As a first step in this project, family caregiving experts from nursing and social work participated in a two-day interdisciplinary invitational symposium, State of the Science: Professional Partners Supporting Family Caregivers. At this symposium, held in Washington, DC, January 29 and 30, attendees began to identify and discuss ways to address how nurses and social workers can better support caregivers. The objectives of the symposium were to
- describe what is known about the demographics and characteristics of family caregivers in the United States and the issues and obstacles that influence their ability to care successfully for family members.
- identify the competencies and knowledge that family caregivers need.
- describe the competencies that nurses and social workers need to best support family caregivers.
- identify best practices for supporting family caregivers.
- identify the gaps in the science and the barriers to implementing interventions for supporting caregiving across service settings.
- identify clinical, educational, research, and policy priorities for developing best practices for promoting and supporting family caregiving.
The planning group for the symposium invited 56 experts from nursing and social work practice, education, research, and policy settings as well as representatives from other groups and organizations involved in caregiving, including consumer advocacy, regulatory, and health care. Nurses, social workers, and other experts in caregiving were asked to write papers reviewing the current state of the science in designated areas. The papers underwent peer review, were sent to all symposium participants prior to the event, and later were modified according to feedback from participants. Highlights of these papers were presented at the symposium with the aim of delineating the evidence currently available to guide nurses and social workers in better supporting the family caregivers of older adults. Special focus was placed on cultural diversity, disparities in access to care, sex differences, and other variables that affect the success of family caregiving. The papers were subsequently edited for publication in this supplement to AJN.
During the symposium, participants worked in small groups to identify clinical, educational, research, and policy priorities and strategies for developing best practices to promote and support family caregivers. Specific tasks for the small groups included
- identifying the knowledge and competencies nurses and social workers need to support family caregivers (see Table 1, page 7).
- recommending ways to develop nurse and social worker competencies to support family caregiving (see Table 2, above).
- recommending strategies for promoting a new model of care that includes both the family caregiver and the care recipient and that will permit caregivers to be reimbursed for the services they provide (see Table 3, page 9).
- recommending other strategies that will enhance the ability of nurses and social workers to support caregivers, including ways to change the culture of organizations, set quality measures that include family caregivers in the care delivery system, integrate technology, and enhance the public's awareness of and the education of professional and nonprofessional caregivers (see Table 4, page 10).
- creating an agenda for future research on family caregiving (see Table 5, page 11).
The symposium participants concluded that, given the increasing number of older adults, it will take strategic collaboration among members of the nursing and social work professions to lead the way in ensuring the good health and well-being of the growing number of caregivers of older adults.
1. Thompson L. Long-term care: support for family caregivers.
Washington, D.C.: Long-Term Care Financing Project, Georgetown University; 2004 Mar. Issue brief;http://ltc.georgetown.edu/pdfs/caregivers.pdf
2. National Alliance for Caregiving and AARP. Caregiving in the U.S.
Bethesda, MD: National Alliance for Caregiving; 2004 Apr.http://www.caregiving.org/data/04finalreport.pdf
3. Committee on the Future Health Care Workforce for Older Americans. Institute of Medicine. Retooling for an aging America: building the health care workforce.
Washington, D.C.: National Academies Press; 2008.