frequently communicate relevant information from one provider to another, or may even detect ways in which the treatment plans are at odds.

As patients continue to age and experience declines in their health, they begin to require greater assistance in performing their roles in the health care process. In response, family members and friends assume increasingly greater responsibility for making treatment decisions, accompanying the patients on office visits, and providing other sources of support. In a great many cases, these family members and friends also become informal caregivers, providing many of the same services that direct-care workers provide, including assistance with the activities of daily living (ADLs), such as bathing and dressing, and the instrumental activities of daily living (IADLs), such as driving and shopping.

The number of informal caregivers in the United States far exceeds the number of paid direct-care workers. There are concerns, however, that the number of caregivers is declining—a trend that is especially worrisome in light of the fact that the direct-care workforce is already stretched thin. Any reductions in caregiver support could have serious negative implications for the adequacy of the direct-care workforce, which makes it particularly important to determine how best to support caregivers in order to maintain the availability of their services.

Both patients and informal caregivers are important parts of the health care team, yet little has been done to impart the necessary knowledge or skills to these team members. Ensuring adequate communication with this part of the workforce is especially important for the older adult population because of hearing, vision, and mental acuity deficiencies (including among some informal caregivers), thereby increasing the likelihood of adverse effects due to the miscommunication. Additionally, as the use of remote information technologies becomes more common, patients and their families will need to be educated on their proper use. Ultimately, any plan for enabling informal caregivers and patients to become more capable members of the health care team is likely to require increased training along with greater support from and integration with the formal health care system.


Given the vital role that patients play in shaping and implementing their own care, they need to be viewed not just as recipients of care, but also as members of the care team. This is especially true in light of the increasing prevalence of chronic disease. The management of chronic illness is complex, and patients are required to take on greater responsibilities than they typically would for acute care. Managing conditions such as diabetes involves day-to-day decision making with respect to lifestyle, prevention, medication use, and other components of health and health care (Newman

The National Academies | 500 Fifth St. N.W. | Washington, D.C. 20001
Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement