An excerpt from chapter one: The Fundamentals of Long-Term Care
Mrs. Smith, an 88-year-old widow with late-stage dementia, moved to a nursing home two years ago when the care she required became too complex for the assisted living facility in which she was residing. Mr. Jones, a 70-year-old retired janitor with diabetes and hypertension, lives in an inner-city, publicly subsidized senior high-rise building, takes 10 medications for his chronic diseases, and receives Medicaid-funded personal care in his apartment twice a week. Although his elderly neighbor also needs this type of assistance and cannot afford to pay out of pocket for these services, her low income is, unfortunately, just above the financial threshold that would qualify her for Medicaid coverage. Ms. Perez, a married, 50-year-old manager of a small business in a Midwest rural town, lives with her husband, a teenage daughter, and her 83-year-old mother-in-law who moved in with the family after being discharged from a skilled nursing facility following rehabilitation treatment for a stroke.
The common thread connecting these scenarios is that all of these individuals have been faced with the need for long-term care and the complex decisions associated with getting services. Today, an estimated 6 million people age 65 and older—almost one in six older adults—need long-term care (Kaye, Harrington, and LaPlante 2010). Over 182 billion public and private dollars are spent on services and supports to help minimize, rehabilitate, or compensate for the loss of chronically disabled elderly individuals’ physical or cognitive functioning (The Lewin Group 2010). Family members—primarily spouses and adult daughters—and friends provide the majority of services and supports. Those using the formal care system typically find themselves navigating a confusing, fragmented array of funding sources, policies, and programs that do not facilitate easy service access and use.
This book is a primer that provides an overview of long-term care, including what it is, why it is an important policy concern, and the key issues that policymakers, providers, consumers, and other stakeholders are struggling with today and will confront in the future. While the majority of the long-term care population is age 65 or older, 45 percent are under age 65, including individuals with physical, intellectual, and developmental disabilities and children with special care needs (Kaye et al. 2010). These groups form an important subset of the long-term care population, particularly among those living in community-based, noninstitutional settings. The issues and trends related to this diverse population, however, are beyond the scope of this book. Although many of the long-term care needs are similar across both age groups, the goals and preferences of younger people with disabilities are often different from their elderly counterparts (e.g., participating in or returning to school or work). Elderly individuals are also more likely than those under age 65 to need long-term care services that interface with the acute and subacute care system. In addition, the risk of needing long-term care is much greater for those age 65 and older. For these reasons, this primer focuses on long-term care for the elderly population.
DEFINING LONG-TERM CARE
Long-term care encompasses a broad range of services and supports intended primarily to help chronically disabled elderly individuals to function as independently as possible for as long as possible. The need for long-term care emerges from chronic and debilitating medical conditions that can occur at birth, during developmental stages, or from accidents. Services provide assistance with basic activities of daily living (ADLs)—dressing, bathing, toileting, eating, and getting in and out of bed or chairs—as well as help with instrumental activities of daily living (IADLs), including household chores like meal preparation and cleaning; life management tasks, such as shopping, money management and medication management; and transportation. They include both hands-on, direct care and standby or supervisory human assistance. Long-term care also encompasses the use of assistive devices (e.g., canes, walkers, wheelchairs) and technology, such as computerized medication reminders and electronic monitoring systems that help individuals with dementia avoid falling or wandering. Building ramps, adding grab bars, and making other modifications to the home are also often included within the definition of long-term care.
An increasing proportion of individuals needing long-term care, particularly those in nursing homes, are medically complex, requiring attention to their medical and their functional needs arising from multiple chronic conditions, such as heart disease, chronic obstructive pulmonary disease (COPD), and diabetes, as well as management of problem behaviors resulting from dementia and other cognitive impairments. Long-term care also includes intense short-term medical, rehabilitative, and therapeutic care to patients following a hospitalization—typically referred to as “post-acute care.” These services can be provided in a nursing facility, inpatient hospital rehab unit, long-term care hospital, or an individual’s home (Alliance for Quality Nursing Home Care 2009). The primary goal of post-acute care is restorative and most of these individuals receive services for a short time.
FACTORS AFFECTING THE INCREASED FOCUS ON LONG-TERM CARE POLICY
Four factors are driving the increased attention on long-term care policy. The first is the aging of the population and how that demographic trend will influence the demand for services. The second is the concern about the costs of long-term care to individuals, families, and society and the impact of current and future demand on Medicaid, Medicare, and other public programs that cover a large portion of the costs of long-term care in the United States. The third is the short- and long-term availability of family caregivers and a well-trained, stable formal workforce to provide the services and to meet the increased demand projected over the next 30 years. The fourth is a continuing concern about the quality of care delivered in nursing homes and, with the expansion of publicly subsidized home and community-based care, an increasing focus on quality issues in these settings.
