Paul’s recollection of his 92-year-old mother’s most recent hospital stay included medical procedures, a revolving door of health care professionals—nurses, technicians, physicians, and social workers—culminating in a thick packet of instructions he was given before his mother’s discharge. What he doesn’t recall is any of the health care professionals ever asking his name, how he was handling all of the changes in his mother’s condition, or if he had any questions about the tasks he was expected to do for his mother when he took her home. Paul says, “There was no training in the hospital for what I was expected to do for my mother at home; they just handed me written instructions and prescriptions for three new medications, on top of the four medications that my mother was already taking. Then they said, ‘This is what you need to do and this is your job. Please sign here.’”
For family caregivers like Paul, “your job” often involves mastering tasks in hours or a few days that nurses and other clinicians spend several years in training to perform. These health-related tasks can include managing complex medication schedules, giving injections, providing wound care, or handling catheters and tube feedings. Additional caregiving responsibilities can include instrumental activities of daily living (IADLs) such as paying bills, transportation to doctor’s offices, and shopping, and activities of daily living (ADLs) for assistance with intimate personal care, such as bathing, dressing, and toileting.
Individuals who provide care for family members, neighbors, friends, and partners with a disability or critical illness are categorized by different terms, including “family caregiver,” “carer,” and “proveedor de cuido.” Whatever the difference in terminology, they all face a common challenge: the feeling of being invisible. Health care professionals focus their attention on the person who is under their care, often referred to as the patient. More often than not, the family caregiver is seen not as an individual but as “the wife,” “the daughter,” “the son,” or “the friend”. They remain invisible to the professional until a major care decision must be made or the person they care for is discharged from the hospital. Suddenly, that nameless person becomes important—not for who they are as an individual, but rather for what they can do to move that care recipient to the next setting.1
In a 2008 New York Times article, Jane Gross observed that, “[f]amily caregivers come to the task with no formal training, little in the way of help from … professionals, scant information about how to find the services for their ailing loved one or for themselves, and no clue how to pay for it.”2 According to an American Journal of Nursing editorial, family caregivers are rarely even asked, “How are you doing? How are you managing?”3 Inadequate support for family caregivers by health professionals, both in the hospital and at home, not only risks turning family caregivers into patients themselves, but also threatens the quality of care provided to older adults.
The situation is particularly harsh for those who provide intensive levels of help, manage complex chronic care, or need financial relief. These strains on caregivers take their toll as insecurity, stress, and burnout produce health and mental health disparities for caregivers, who are more prone than their non-caregiving peers to physical illness and depression. Thirty-one percent of family caregivers rate the emotional stress of caregiving as high.4 Family caregivers who experience extreme stress have been shown to age prematurely. This level of stress can take as much as 10 years off a family caregiver’s life.5
The 2008 Institute of Medicine report Retooling for an Aging America: Building the Health Care Workforce emphasizes the need to prepare professionals, paraprofessionals, and family caregivers to support a growing older U.S. population. The report highlights the growing shortage of nurses and social workers who are educated to meet the needs of older adults and underscores the key role played by family and other informal caregivers as the backbone of the nation’s system of long term services and supports (LTSS), as well as the pressing need to provide them with training and support.
Overwhelmingly, the family caregiver takes on the responsibility of providing care to the older adult. At the same time, the reallocation of public resources toward more home and community-based-care, and away from institutional care, reinforces the critical need for professional support of family caregivers. In 2009, approximately 10 million Americans living in the community needed LTSS. More than half of this group (5.2 million) was 65 or older, and 1.7 million were 85 and older. Those with LTSS needs comprised some 14 percent of the community-dwelling population age 65 and older, and 38 percent of those age 85 and older.6 The support of trained professionals along with public policies and private sector initiatives is needed to provide education, support, and services to sustain caregiving families.
In 2007 the AARP Foundation, with the support of funds from the John A. Hartford Foundation and the Jacob and Valeria Langeloth Foundation, launched a caregiving initiative—Professional Partners Supporting Family Caregiving Phase I—to address the need of family caregivers to be supported by health care professionals, in particular by nurses and social workers. The initiative included a historic collaboration among nurses, social workers, and family caregiving advocates that articulated best practices in family caregiving and mapped out strategies for these professional groups to work together to reinforce and prepare family caregivers in all care settings.
Experts at the invitational symposium “State of the Science (SoS): Professional Partners Supporting Family Caregiving,” began to identify key competencies, knowledge, and best practices required by nurses and social workers to assist family caregivers. The symposium set the stage for the emergence of new models of “family-centered” care, in which nurses and social workers actively collaborate to improve support for family caregivers and work in partnership with them to improve quality of care.7 Symposium findings were published and disseminated in the media and national presentations, and appeared as special supplements to the American Journal of Nursing and the Journal of Social Work Education.
Phase II of the initiative, Professional Partners Supporting Diverse Family Caregivers Across Settings, was launched in the summer of 2009 and again was supported with funding from The John A. Hartford Foundation and The Jacob & Valeria Langeloth Foundation. In an effort to equip and engage professionals to become more responsive to the needs of family caregivers, Phase II seeks to transform the best practices and lessons learned from Phase I into standard practices in hospitals and community-based settings. Family caregivers in the United States are frequently the only “care coordinators” for persons needing LTSS and chronic health services. Nurses and social workers are on the frontlines of care and as such are in a unique position to provide support to family caregivers. They share this responsibility with other disciplines within the health profession. It is crucial that nurses, social workers, physicians, and other health professionals work in teams. These teams should proactively engage family caregivers as partners in care.8
The 2010 release of the NASW Standards for Social Work Practice with Family Caregivers of Older Adults represents a major step forward for social workers attending to the needs of the family. The standards promote social work support for family caregivers across care settings. An important goal of the standards is to highlight that “attention to the contributions, strengths, needs, and goals of family caregivers is integral to social work practice” in various settings.9 These standards represent an effort to recognize family caregivers as individuals with needs and not only as the person providing care to their loved one.
In January 2011, the AARP Public Policy Institute oversaw a series of focus groups with African American and Hispanic family caregivers of older adults. Findings from these groups highlight the need for more focused support from the nursing community, particularly in hospital settings. In an effort to address many of the challenges raised, the AARP Foundation, in partnership with the American Journal of Nursing and New York University/Hartford Institute for Geriatric Nursing’s Nurses Improving Care for Healthsystem Elders program, is in the early stages of developing a web-based toolkit for training nursing professionals that focuses on three themes:
(1) assessing the need of the family caregiver,
(2) communicating with family caregivers as partners in care, and
(3) principles and practices for teaching health care tasks to family caregivers.
The magnitude and scope of this combined effort is significant. Through the continued collaboration of strong national organizations that are invested in achieving better support for family caregivers, there is a great opportunity for a critical advancement in professionals supporting family caregivers. These efforts will present opportunities for nurses, social workers, and families to engage and interact in ways that offer family-centered environments that support older adults.
This article highlights pioneering work that is currently being done in the United States. It is important to note that caregiving organizations internationally are working diligently to address many of the same issues in their respective countries. Organizations at the national level such as Carers UK and at the regional or international levels such as Eurocarers are working to advance the issues of informal caregiving as well as provide resources and simply give a voice to the caregivers themselves.
As the understanding of what family caregivers face on a daily basis increases, so too does the opportunity for health care professionals to lift the cloak of invisibility in an effort to recognize and address the needs of
1 United Hospital Fund, Carol Levine: Health Care Typecasting—”Nobody Knows My Name!”, http://uhfnyc.org/news/880727, January, 20, 2011. Accessed May 15, 2011.
2 Jane Gross, “Who Cares for the Caregivers?” New York Times, October 14, 2008
3 S. Reinhard, A. Brooks-Danso, K. Kelly, and D. Mason, “Editorial: How Are You Doing? Professional Partners Supporting Family Caregivers,” American Journal of Nursing Vol. 108, No. 9 Supplement (September 2008), 4–6.
4 National Alliance for Caregiving (NAC) and AARP. November 2009. “Caregiving in the U.S.” 2009. Bethesda, MD: NAC and Washington, DC: AARP. Funded by the MetLife Foundation.
5 Epel, E. (2004) Proceedings of the National Academy of Sciences. Vol. 101, No. 49
6 E. Kassner, “Home and Community-Based Long Term Services and Supports for Older People”, AARP Public Policy Institute Fact Sheet 222 (Washington, DC: AARP, May 2011)
7 S. Reinhard, A. Brooks-Danso, K. Kelly, and D. Mason, “Editorial: How Are You Doing? Professional Partners Supporting Family Caregivers,” American Journal of Nursing Vol. 108, No. 9 Supplement (September 2008), 4–6.
8 C. Levine, D. Halper, A. Peist, and D. Gould. 2010. Bridging troubled waters: Family caregivers, transitions, and long-term care. Health Affairs, 29(1): 116-124
9 NASW (National Association of Social Workers) Standards for Family Caregivers of Older Adults, p. 17: www.socialworkers.org/practice/standards/NASWFamilyCaregiverStandards.pdf
Susan C. Reinhard
Susan C. Reinhard is a Senior Vice President at AARP, directing its Public Policy Institute. She also serves as the Chief Strategist for the Center to Champion Nursing in America at AARP, a national resource and technical assistance center created to ensure that America has the nurses it needs to provide care both now and in the future.
Rita B. Choula
Rita B. Choula is a Project Administrator in the AARP Public Policy Institute, focusing on research and policies regarding family caregiving. As part of the Office of Strategic Initiatives, she administers Foundation grants to develop tools for professionals to better support family caregivers.