1. Sofer, Dalia


Family caregivers are receiving much-needed support, but is it enough?


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In 2015, about 47.8 million Americans-14.9% of the population-were age 65 or older, according to data released by the U.S. Census Bureau in April. By 2060, that number is expected to rise to 98.2 million-or about 25% of the population-nearly 20 million of whom will be age 85 or older.

Figure. A family car... - Click to enlarge in new window A family caregiver guides her 92-year-old aunt, who has Alzheimer's disease, through the living room of the house they share. She is often assisted by her teenage son. Photo (C) Syracuse Newspapers / M Greenlar / The Image Works.

The growing number of older Americans brings new challenges for another, less visible cohort: family caregivers. A 2012 study by the AARP Public Policy Institute and the United Hospital Fund, Home Alone: Family Caregivers Providing Complex Chronic Care, brought attention to the fact that as an aging population increasingly lives with chronic conditions, family caregivers are not only helping with personal care and housework, they are also undertaking tasks typically performed by health care professionals.


Of a nationally representative sample of 1,677 unpaid caregivers surveyed in the study, 46% said they performed medical and nursing tasks: 78% managed medications, 41% prepared food for special diets, and 35% performed wound and ostomy care. Tasks the caregivers deemed challenging included the use of incontinence supplies and the administration of enemas (67%), as these transcended the customary bounds of intimacy; wound and ostomy care (66%); and medication management (61%). Furthermore, 49% of those who operated medical devices-such as mechanical ventilators or equipment for oxygen, tube feeding, home dialysis, or suctioning-found the task to be difficult.


Despite these challenges, caregivers rarely received appropriate training. About 61% of those managing medications and 42% of those caring for wounds said they learned to do so on their own. Although some of these respondents noted they had received training at some point, "the training that is being provided-usually hastily and at the last minute-is not satisfying family caregivers' needs," the researchers concluded.


The health effects of these stressors on caregivers are substantial: of those performing medical and nursing tasks, 32% reported fair or poor physical health, and 40% said they felt "down, depressed, or hopeless in the last two weeks."



According to Caregiving in the U.S., a 2015 report by the AARP Public Policy Institute and the National Alliance for Caregiving, family caregivers make up a sizable portion of the general population. In 2014, about 43.5 million adults in the United States provided unpaid care to an adult or a child. Based primarily on online interviews with 1,248 caregivers, the report-which focused on caregivers tending to an adult-revealed that about 60% of caregivers were female. Some 85% were tending to a relative, with 49% looking after a parent or parent-in-law. The average caregiver was 49 years old and spent 24.4 hours per week on caregiving tasks. Those tending to a spouse, though fewer in number (only 1 in 10), spent more time providing care (about 44.6 hours a week).


To address the schism between the tasks caregivers perform and the training they receive, AARP developed model state legislation based on the findings of the Home Alone report. The bill, the Caregiver Advise, Record, and Enable (CARE) Act, requires hospitals to invite patients to identify a caregiver-a relative, neighbor, friend, or partner-whose name and contact information are recorded in the patient's chart. This person must be notified of the timing of discharge and consulted regarding any discharge arrangements. The hospital must also offer the caregiver instructions on the medical and nursing tasks included in the discharge plan and answer the caregiver's questions. However, a patient is not obligated to identify a caregiver, nor is a designated caregiver required to undertake the responsibility.


The CARE Act has been embraced nationwide, receiving rare-and speedy-bipartisan support. As of July, it had become law in 39 states and territories. Susan C. Reinhard, PhD, RN, FAAN, senior vice president and director of the AARP Public Policy Institute, explains, however, that the act has thus far been unevenly implemented by the states that have adopted it. Among those that have done a good job, she says, is New Jersey, where the American Organization of Nurse Executives was extremely active in the development of the law, as was the New Jersey Hospital Association, which conducted webinars along with AARP in which the implementation of the law was discussed with representatives of state hospitals.


How well health care facilities are applying the CARE Act isn't yet known, but since the fall of 2016, AARP has been conducting a nationwide assessment. Reinhard says that many hospitals' initial response was, "We don't need this; we already do it." However, there is a growing appreciation that they may not be doing a good enough job. "I am particularly interested in going into hospitals to find out what may be standing in the way of implementation," she says, "and to explore what can be done at the state level and nationally."


Separately, the United Hospital Fund's Families and Health Care Project conducted a webinar in April with nearly 200 hospital staff from throughout New York State in which almost 80% of participants said their hospitals had a formal process for identifying family caregivers. Two of the most commonly cited problems in regard to instituting the CARE Act were patients' unwillingness to name a caregiver (51%), and their inability to name a caregiver because of cognitive impairment (35.9%)-obstacles that, says Carol Levine, the project's director, require further exploration. The United Hospital Fund provides a free toolkit to assist hospitals in implementing this act. For more information, go to



Changing practice may begin with health care facilities, but a national cultural change is also vital. To that end, AARP, in partnership with public, nonprofit, and private organizations (including AJN), has launched the Home Alone Alliance, which conducts research, develops resources, organizes conferences, and advances public outreach in order to change how caregivers and health care organizations and professionals interact. An early example of its efforts is a series of instructional videos for family caregivers available on its website (go to For additional information, see AJN's collection of articles, Supporting Family Caregivers: No Longer Home Alone (, in which the topics covered in these videos are discussed.


The use of family caregivers will likely grow as uncertainty about health care reform persists. Most precarious is the fate of Medicaid, which is the primary funder of long-term care, providing $55 billion in 2015 for nursing home care.


Last but not least in this discussion is the changing role of hospitals as they attempt to contain rising health care costs. As the United Hospital Fund's Carol Levine writes in Always on Call: When Illness Turns Families into Caregivers, "Even in cultures where family is the primary unit of attachment, communities have usually supplemented what families can provide, or assumed some caregiving roles[horizontal ellipsis]. Religious institutions have a long history of providing care for the ill and dying; modern hospitals grew out of this tradition." Yet, she notes, this practice is increasingly being overshadowed by market-driven considerations.-Dalia Sofer