In 2007, an estimated 7 million older Americans needed long-term care due to functional impairment, usually as a result of chronic medical conditions and illnesses. Most of these people choose to remain in the community, and require services to help them stay in their homes rather than enter an institution. These services constitute what is generally known as community-based long-term care (CBLTC). As the population ages and the number of functionally impaired older adults increases, so will the need for CBLTC. Unfortunately, no coherent national policy drives CBLTC in the United States, which leaves a “system” that is inconsistent, decentralized, difficult to access, bewildering to navigate, and unable to fully meet the needs of many patients. Much of what is actually done to meet these needs is provided by unpaid family caregivers at great personal and economic cost. This chapter addresses CBLTC for older adults in the United States. We outline the semantic challenges in understanding the scope and nature of CBLTC and the heterogeneity of care models that comprise CBLTC, describe who receives, provides, and pays for it, and review the evidence for its effectiveness. We also discuss important public policy issues and identify emerging innovations and trends in CBLTC delivery.

The term “community-based long-term care” overlaps with several other terms in the medical and social sciences literature, including home care, personal care services, home and community-based services, home visits, and house calls. In general, these terms refer to nursing, personal care, or social services provided to older persons, with an explicit goal of filling unmet needs or maintaining them in the community. Most of this kind of care is provided by unpaid family members or friends, sometimes with support from a variety of formal caregivers. Home care may mean home-based rehabilitation or disease management after hospital discharge, preventive health interventions, geriatric assessment, primary care physician visits, or highly technological care provided in individual patient homes. These services often overlap to such an extent that important aspects of a given intervention are not accurately reflected in a single label. For example, a program in which an interdisciplinary team provides comprehensive geriatric assessment followed by primary care home visits, inpatient management as needed, and continuing longitudinal care after hospital discharge does not fit neatly into any one category. Several forms of CBLTC integrate housing arrangements with personal and medical care, further blurring the distinction between CBLTC and institutional long-term care. Table 22-1 depicts the heterogeneity and scope of services and settings that fall under the rubric of community-based long-term care.

Home health care usually comes in two forms: unskilled and skilled care. Unskilled care refers to services provided by unpaid caregivers, usually female family members. The estimated 26 million informal caregivers in the United States provide 45% to 70% of all home care and CBLTC services at an estimated economic value of $196 billion—far greater than national spending on formal home care ($32 billion) and nursing home care ($83 billion). Skilled home health care refers to formal services delivered by professional providers, such as nurses or physical, occupational, or speech therapists. Medicare certifies and reimburses home healthcare agencies (HHAs) to provide this type of care when a patient is homebound and has a skilled need (see “Who Provides and Pays for CBLTC” later in the chapter). HHAs may also provide formal personal care services (bathing, dressing, etc.) under the Medicare home health care benefit while a patient is receiving skilled care. Although hospitalization is not required by Medicare to initiate home health care, postacute hospital skilled needs and rehabilitation are common reasons physicians refer patients for these services. For example, an older patient who suffers an acute exacerbation of chronic obstructive pulmonary disease may spend several days in bed (at home or in the hospital), and may need nursing to monitor her respiratory status and physical therapy to help her regain her baseline functional mobility. It is important to note that the effectiveness of skilled home care often relies on services provided by an informal caregiver who, if available, can implement a home exercise program, clean and dress pressure ulcers, or bathe, dress, and toilet a dependent patient.

Two related models of formal home medical care include physician house calls and hospital-at-home. Physician house calls, in which physicians (and, increasingly, nurse practitioners and physician assistants) provide ongoing longitudinal medical care at home, can play an important role in providing access to routine and urgent care for older adults who have difficulty getting to a medical office. Physician house call programs have been increasing in prevalence in recent years, though they are not yet widespread. Hospital-at-home is an emerging care model that provides hospital-level care in a patient’s home as a substitute for an acute hospital admission. Other forms of CBLTC involve intermittent assessment and monitoring over time. Preventive home visits and home-based geriatric assessment typically aim to identify older adults in the community who have hidden risks for developing illness or functional decline, and modify those risks to prevent poor outcomes. Disease management targets patients known to have specific diseases or conditions that require significant care coordination, such as diabetes or heart failure, for formal support in managing those conditions, with the goal of delaying disease progression and avoiding hospitalization.

Still other forms of CBLTC entail temporary or permanent changes in location of care. Adult day care generally includes transportation to a day care center, and can provide both structured social activities and basic medical monitoring and treatment. The Program of All-Inclusive Care for the Elderly (PACE) relies heavily on a “day health center” in which dually eligible (i.e., Medicare and Medicaid eligible) nursing-home eligible participants receive comprehensive medical, hygienic, social, and rehabilitative care. For patients who cannot continue to live in their own homes, assisted living, sheltered housing (also known as senior apartments), adult foster care, and group homes all provide varying levels of functional assistance and access to some medical services. Continuing care retirement communities (CCRCs), as the name suggests, are self-contained organizations that allow people to move within the community to increasing levels of care as their needs dictate. At one end of the continuing care spectrum, a fully independent older adult lives in a single-family home or apartment, but over time may transition first to an assisted-living apartment, then to the skilled nursing facility within the same CCRC. There are several variations on this model, but most charge an entrance and monthly fee that provides lifelong care in the event that the participant develops some kind of functional impairment. Finally, some continuing care models, called life care at home, provide a similar range of care but do not require purchasers to move from their own homes.

This array of services and settings can be framed as a quasicontinuum of care services for older adults, as shown in Figure 22-1. While some forms of CBLTC are designed to address the needs of older adults through a variety of health or disease states, such as home health care, CCRCs or postacute disease management programs, others are targeted to specific populations based on levels of impairment or disability, such as preventive home visits or PACE. Again, many patients and programs do not fit neatly into a single category and patients do not usually move across the continuum in a straight line, as the use of services depends not only on the fit between the needs of an older adult and the care model, but also on the preferences of older adults and local availability of care models. For example, skilled home health care may be used by a healthy older adult after elective joint replacement surgery, or by a frail chronically ill patient recovering from a recent episode of community-acquired pneumonia treated at home by a physician house call program. However, the concept of a continuum is a useful construct for organizing categories of CBLTC.

As Figure 22-1 demonstrates, CBLTC services may be used by older adults over a wide range of health status. Health maintenance strategies such as preventive home visits and geriatric assessment tend to target patients who are relatively robust and functionally independent, while PACE and physician house calls address the needs of patients who are more frail and impaired. CCRCs and life care at home explicitly transition patients from the robust state through functional decline. Postacute home health care, physician house calls, and hospital at home may be used by both robust and frail older adults in specific circumstances, but the primary intended users of most CBLTC remain those who have chronic and complex medical illness accompanied by some level of functional disability, and thus require care for a prolonged or even indefinite time. The likelihood of receiving formal care is lower for men, minorities, married individuals, those with lower socioeconomic status, and those who are less dependent for assistance with activities and instrumental activities of daily living.