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The Long-Term Care Continuum in an Aging Society

GRAHAM D. ROWLES

PAMELA B. TEASTER

INTRODUCTION

FAMILY STORIES

Grandma Brewster

It was easy to remember how old “Grandma Brewster” was because she was born in 1900. When she died in 1995, Margaret had lived a full life. After her husband’s death in 1973, she remained in the large two-story New England colonial-style Connecticut home on the five-acre lot where she and Albert had raised their twins, Samuel and Susan. Sam lived with his family (including four of Elizabeth’s grandchildren) in a ranch home, about half a mile away. Susan, her husband, and two of their three daughters lived on a dairy farm a little over a mile from Margaret. For several years, Margaret was able to remain in her home. She took up painting and devoted increasing amounts of time to her needlework. The matriarch of the family, she continued to host Thanksgiving dinner where close to 20 members of the extended family would dine beneath the Norman Rockwell “Freedom from Hunger” framed print that adorned the dining-room wall. Over the years, members of the family played an expanding role in preparing food and coordinating the celebration. Sam and Susan were frequent visitors, with Sam assuming progressively greater responsibility for home repair, garden maintenance, and providing assistance with her finances. Nonslip strips were placed on the wooden steps outside the kitchen door, and Sam installed a handrail to reduce the possibility of a fall when the steps were wet. A telephone with a large dial, modified ring-tone, and volume control was installed to compensate for Margaret’s declining hearing and vision. As climbing the stairs became more problematic, Sam moved her bed downstairs into the room adjacent to the dining room. Over the years, the locus of family events—with the notable exception of Thanksgiving (where family members pitched in more and more to help with preparation of the meal)—gradually shifted to Sam’s and Susan’s homes.

And then, one day, Margaret fell. She was hospitalized with a back injury. Returning directly to her home was not an option. And so, when she left the hospital, Margaret moved into Sam’s house for a period of recuperation. She stayed for several months. Because of a lack of space (three of Sam’s children were still living at home), staying with Sam was not a viable long-term option. As time passed, Margaret became increasingly anxious to go “home.” Sam, Susan, and the remainder of the family were concerned for her safety should she do this. Following extended discussions involving Margaret and different factions of the family, some of it quite tense, they all agreed that the best option for Margaret would be to move to a smaller residence. Consequently, Margaret gave up her home of 47 years and relocated to a four-room apartment in town. She lived in a modern apartment block that had begun to develop into a naturally occurring retirement community (NORC), as a progressively increasing proportion of residents were older adults. Margaret accommodated well. She kept her car and so was still able to attend her church and her painting classes and visit family and friends. The smaller residence was much easier to maintain and keep to the level of pristine cleanliness she had always valued. Although she was on the third floor, an elevator that opened close to her door made it easy to get around. She became close friends with new neighbors, including Mary Corson, a widow only 1 year younger, who lived in the next apartment and Audrey Septian who lived at the other end of the corridor. The three ladies would spend much time together. Margaret remained fully engaged with her family as Sam, Susan, or one of her grandchildren would always pick her up so that she could attend gatherings that might extend into the evening. Margaret had decided that she would no longer drive at night.

This arrangement worked well for more than 4 years; but when her friend Mary died and Audrey moved into a nursing facility, Margaret’s increasing isolation and growing frailty necessitated a move to a setting where she might receive regular onsite care. After some searching around and family discussion of various options, Sam, Margaret, and the rest of the family settled on Cavendish Place, a continuing care community that provided dining facilities, assistance with activities of daily living (ADLs), and a continuum of health care support options that would become increasingly available to Margaret as her level of impairment increased. Once again, Margaret quickly settled into her new home, this time a room with an adjacent bathroom. She surrounded herself with photographs of Albert, her children and grandchildren, a few family heirlooms she had the space to accommodate, and her craft projects. Over the next few years, she was still picked up for family events, but as her health declined, this strategy became progressively less feasible. She became increasingly reluctant to leave the familiarity and comfort of her room although she still hosted family members, including her grandchildren and great-grandchildren, who loved to hear her stories and receive the candy she always kept next to her chair. She remained cognitively competent although she tired easily and dozed more often. Eventually, she needed to be on oxygen for part of each day. On May 4, 1995, Margaret, “Grandma Brewster” died in her sleep.

Anders Swenson

Anders Swenson is now 36 years old. He was born in Tennessee at a time when the median life expectancy of individuals born with Down syndrome was less than 25 years (Yang, Rasmussen, & Friedman, 2002). By 1997, this figure had increased to 49 years, and today the life expectancy of persons with Down syndrome is approximately 60 years.

When he was a child, Anders experienced many of the comorbidities associated with Down syndrome. He had a heart condition that required surgery and was subject to frequent respiratory infections. In the small town where he lived, resources for the care and support of persons with Down syndrome and their families were limited. Both of his parents, Gunnar and Joanna, were well educated. They quickly schooled themselves on Down syndrome and soon became conversant with the condition. They became fully engaged in the local community of parents with Down syndrome children, eventually assuming a leadership role. Anders received the best possible care, with both of his parents fully invested in his future and a family context in which both Gunnar and Joanna were fully aware of and committed to their unexpected long-term responsibility for his well-being. Both accepted that their lives would be reshaped as a result of their lifelong commitment to the long-term support of their son. Though they fully embraced their parental role, both worried about how he would fare when they were much older or no longer alive (Dillenburger & McKerr, 2010). As Anders grew into adulthood, his potential was maximized at every step. Following a move to Montana, Gunnar and Joanna made sure that he continued to receive the best possible education. Also, they prepared for his future. Gunnar worked with him to the point that he was able to develop a degree of independence and become part of a father and son craft business.

In 2014, Gunnar died after a lengthy battle with a chronic form of leukemia. While Joanna remains alive, Anders can count on her continuing committed and knowledgeable support. What about the thousands of other persons with disabilities being cared for by aging parents? Who will provide the appropriate level of informed long-term care when they are gone?

Mark A. Lincoln

Mark A. Lincoln was born in 1922, the youngest boy born to an Arkansas farm family of nine. He was raised as a member of the Church of the Brethren: the women wore long dresses and covered their hair with white bonnets; the men wore plain, dark clothes and broad-brimmed hats. Their faith, a cornerstone of their work and life, demanded strict adherence to its tenets. Their religion forbade education beyond the 8th grade, but Mark was so capable that he repeated the grade twice, helping the teacher of the one-room school during his “second year.” When Mark was 16, he left the farm to work in a sign business owned by his oldest brother. At age 18, he was called to fight in World War II. His goal was to be a fighter pilot, but World War II had already been won on a number of fronts, and so he ended up working on radios in the Philippines. Taking advantage of the GI Bill, he completed a degree in theater but soon realized that he could well starve before he was “discovered.” He acquired a secondary school teaching certificate, returned to live with his older brother, and became a high school teacher of English and theater. There he met Ellen, an English teacher at the same high school. They married and moved to a small comfortable home. Ellen became pregnant within two years of the marriage, and the couple had one child.

Shortly after the birth of their daughter, Kaylee, Mark began a career in banking that lasted the rest of his working life. Ellen continued teaching high school English for over 30 years. The three led a modest but warm and loving life together. After graduation from the local high school, Kaylee attended a nearby state university, earned a master’s degree in theater, and married an English teacher who worked at the same high school where her parents had first met. Immediately after the marriage, work opportunities led to Kaylee and her new husband moving 6 hours away. For 7 years, Kaylee taught high school English and theater while her husband also taught high school but later returned to school and completed a law degree. Upon graduation from law school, a career opportunity for Kaylee’s husband enabled the couple to move 4 hours closer to her parents. Kaylee then went back to school, earned a doctorate, and was hired by the university she had attended. About a year later, Mark (now 76) and Ellen (now 74) had their first grandchild, a curly-haired boy.

All her life, Ellen had been plagued by respiratory problems, having inherited them from her father. After many years of treatments, including steroids, prednisone, and inhalants, she died at the age of 77. In the spring prior to her mother’s death, Kaylee had accepted a new faculty position about a 6-hour drive from her parents’ home. She was concerned about leaving her father alone so soon after her mother’s death, although she knew he was surrounded by many friends (mostly around Mark’s age). For the first few years after Ellen’s death, Mark cooked for himself, volunteered at the church and local hospital, and visited back and forth with his daughter and her family.

About 2 years after Ellen’s death, Mark fell for the first time and had to be hospitalized: during his stay he was diagnosed with dementia and peripheral neuropathy. Although he was discharged home, his fall was the first of many such incidents that followed. He also was involved in a number of minor car accidents. Over a 5-year period, Mark grew thin and pale. He became increasingly confused, and more and more often when she visited, Kaylee found remnants of old food and milk in his refrigerator but little else to eat in the house. She called her father daily and tried to visit as often as her work schedule and her own family responsibilities would allow. Her ability to provide daily support was severely limited by distance at a time when her work responsibilities were increasing and time available to take care of her father had decreased. And then Mark was diagnosed with four heart blockages requiring surgery. During the surgery, Kaylee was in constant contact with the surgeon. Shortly after the surgery, accompanied by Mark’s now 4-year-old grandson, Kaylee moved in with Mark where she spent several weeks helping her father convalesce and trying to fulfill her distant work commitments. Subsequently, when he could travel, Kaylee drove her father back to her house where he would stay for a few weeks. Kaylee’s husband helped when he could, but the location of his work meant that he was away for extended periods.

Though Mark regained strength and acuity and eventually returned home, it was not long before his confusion returned, he began to eat less and less, and he experienced several more falls and minor car accidents. He loved his daughter and her family and appreciated the dilemma posed by their living so far away, but he remained firm in his conviction to remain in the town where he had lived his entire adult life. Nine months later, after another car accident and a precipitous fall that again landed him in the hospital, Mark reluctantly agreed to sell the family home and move into an assisted living facility. He arranged the sale of most of the personal property accumulated over his lifetime with Ellen. Kaylee, her husband, and his grandson traveled to help him move out of the family home and into the facility. Mark fared well at Oakwood Hills for about a year and a half. Over time, he began to mix up his medications (Kaylee arranged for him to be assisted), became increasingly confused and depressed (he began to accuse Kaylee of trying to put him in a “home”), and was sometimes hostile to staff (Kaylee intervened with the facility administration and with Mark’s physician). His balance gradually worsened, but he refused to use a cane or a walker, even though Kaylee and others provided him with many varieties.

Kaylee had long wished for another child. After over 6 years of waiting, she traveled to China to adopt a little girl of 2½ years. Her husband and son remained in the United States because not only Mark but also Kaylee’s mother-in-law was failing and was too frail to be left with no close family member nearby. While walking to the telephone in his room to hear the first words of his new granddaughter and speak to his daughter, both in China, Mark fell again, this time slamming his head hard against a table and crashing to the floor. He had broken his neck. Despite the efforts of the medical team, his son-in-law, and Kaylee’s efforts to guide his care from a distance, Mark died 10 days after she returned to the United States.

DEFINING LONG-TERM CARE

The three stories introducing this chapter are modeled on actual situations; they are among the myriad possible scenarios of long-term care considered within this book. Dilemmas of aging in place versus relocation, emergent issues resulting from success in extending the longevity of persons born with disabilities, and difficulties in providing care from a distance are examples of an array of issues in providing long-term care in an aging society—a society in which the need for such care is increasing in the face of stable or declining human and capital resources. But what then, exactly, is long-term care?

The most often used definition is that of Kane and Kane (1987, p. 4), who defined long-term care as “a set of health, personal care and social services delivered over a sustained period of time to persons who have lost or never acquired some degree of functional capacity.” In this book we broaden this perspective. Fundamental to such elaboration is clear expression of what we mean by care and caring. The words care and caring can be viewed in many ways, but perhaps most important is to distinguish between the practice of care and the emotion behind caring—we care for our fellow humans and attempt to be caring individuals. We navigate the process, programs, or mechanisms through which this sentiment is manifest: the provision of care services and programs and the practical acts of serving the needs of those who have “lost or never acquired some degree of functional capacity.” Care or caring about the fate of others without administrative structures, services, and programs to provide this care in a practical way is noble but ineffective. On the other hand, provision of a full array of services and programs without an underlying and fully internalized ethic of care and caring results in a system that may be effective in providing practical support but lacking in meaning for all involved (Douglas, 2010; Tronto, 1993). The trick, of course, is to develop approaches to care and systems of care that are fully integrated expressions of a caring society that acknowledges the richness of human experience and is based on the desire to enable all people to function at their highest level of human potential. The ever-growing system of long-term care options in the United States has sometimes provided care without caring because it has strayed away from the ultimate purpose of not just providing services or support to improve function but also achieving the loftier goal of facilitating the highest possible quality of life for those being served.

A diversity of definitions of care and caring and the distinction between sentiment and service is woven throughout the chapters in this book. Rather than limiting each author within the rubric of standardized definitions, we encouraged the contributors to write from their own individual perspectives on long-term care. In this introductory chapter we provide four general definitions of long-term care, but we encouraged the authors of each chapter to expand on these definitions in the most appropriate manner for expressing different aspects of the long-term care enterprise.

As we have noted, much has been written on notions of care and caring (Bassett, 2002; Parr, 2003; Weaver, 2013). As Kittay, Jennings, and Wasunna (2005) so eloquently articulated, “People do not spring up from the soil like mushrooms. People produce people. People need to be cared for and nurtured throughout their lives by other people, at some times more urgently and more completely than at other times” (p. 443). The need for an ethos of care and caring has been often expressed in fields such as nursing (Bassett, 2002; Dewar & Nolan, 2013).

Our definition of long-term care, the concrete manifestation of care and caring, blends the perspectives of Kane and Kane (1987) and Mosby’s Medical Dictionary (2009): health, personal care and social support delivered on a recurring or continuing basis to persons who have lost or never acquired some degree of functional capacity. This definition embraces all forms of long-term support, ranging from the informal care provided by family and friends to the full array of formal services provided by both public and private service delivery programs, organizations, and institutions. In recent decades, the diversity of options has increased; there are now a plethora of alternatives for providing different types of long-term support.

The proliferation of long-term care alternatives is not a random occurrence. It represents the progressive creation of new options as the landscape of needs has evolved (see Chapter 2). What has emerged as a long-term care system is a linked set of supports, services, and integrating mechanisms that guide and track the provision of both informal and formal physical and mental health and social services to persons in need of long-term care (adapted from Evashwick, 2005). This system is imperfect and dynamic. For example, a generation ago, Cavendish Place was not an option for Margaret; there was no need to confront the issue of Ander’s care in his 60s, as he would not be alive at that age, and Mark Lincoln’s daughter would likely have been living nearby, thus obviating the need for long-distance caregiving. It is also important to acknowledge the cultural diversity of long-term care systems. Nursing facilities, assisted living, special housing options, adult day care, and the full array of alternatives discussed in this book are distinct features of contemporary American society. They do not exist as options within societies that sustain alternative cultural models of long-term care; for example, the sustained and sometimes exclusive primacy of the family in the provision of long-term care.

As the current system of long-term care in the United States developed over the past century, it increasingly became framed within a continuum of care, one that continues to evolve in the present century. Recognition that the long-term care needs of individuals are constantly changing necessitates a system that allows for the flow of individuals within the system, often although not invariably, in the direction of increasing dependency. Margaret Brewster and Mark Lincoln both reflect this pattern. Their stories provide unique trajectories of movement along a continuum in which a variety of pathways are available. Formally defined, we can consider the continuum of care as an integrated form of long-term care provision that provides a comprehensive and linked set of supports and services focused on meeting the health, personal care, and social services needs of individuals as their capabilities and circumstances change (adapted from Evashwick, 2005). In adopting this definition, we emphasize the importance of avoiding the negative connotation of an invariant progression from independence to dependency and, instead, frame the continuum in the context of exchanges occurring throughout the life course. As part of the human condition, human beings are interdependent from birth to death (Silverstein, Conroy, Wang, Giarusso, & Bengtson, 2002). The physical dependency of infancy is reciprocated by the gift of a new life. The social contract of adulthood necessitates the manifestation of this reciprocity through care of both the young and old as part of the accumulation of social capital. In old age, we draw on this capital as we exchange the receipt of physical care in payment for the legacy we have created and that we will leave.

Throughout this volume, notions of care and caring, the design of long-term care services, and consideration of ways in which these are linked within a long-term care system are framed within a continuum of linked options that, ideally, are constantly transitioning toward maximizing quality of life.

THE DEMOGRAPHIC CONTEXT OF CONTEMPORARY LONG-TERM CARE

PATTERNS OF CHANGE

As societies move through the process of industrialization and development, they experience a demographic transition that results in increased longevity, a growing elderly population, and the survival of sub–population groups that formerly might not have survived through infancy (Figure 1.1). In the first phase of the transition, essentially agrarian societies are characterized by high birthrates and high but fluctuating death rates as a result of wars, famines, and epidemics. During this phase, the population remains small and young, with few individuals surviving to old age. With development and industrialization, improvements in sanitation, fewer epidemics, enhanced health care and better living conditions, infant mortality levels drop. But a cultural lag in recognizing that fewer births are needed to ensure the survival of a viable population means that the overall population begins to rise. This growth continues although at a gradually slowing pace as birthrates drop and death rates remain low. Eventually, a situation is reached where death rates are low and birthrates are also low (although sometimes fluctuating as a result of periodic “baby booms”). The overall population stabilizes at a high level. In some developed countries, it appears that the overall population may even be moving to a point below replacement level (where the number of births is lower than is needed to maintain the population size).

As societies move through the demographic transition, patterns of illness and death gradually change as a result of an epidemiologic transition. Researchers generally consider this transition as involving three phases. First, corresponding to the earliest phases of the demographic transition, is a stage of pestilence and famine characterized by high death rates from periods of chronic malnutrition, plague, and epidemics of infectious diseases such as smallpox and cholera. During a second stage, there is a gradual decline in deaths from epidemics and famine and a transition to infectious diseases such as tuberculosis, pneumonia, and influenza as dominant causes of death. With improvements in medical care, these diseases become far less prevalent among younger people but become the scourges of old age. In the final phase of the epidemiologic transition, there is a shift from infectious diseases as the primary cause of death and disability to chronic illness as the major cause of morbidity and mortality. Today, the dominant chronic illnesses are coronary heart disease, hypertension, diabetes, arthritis, and cancers (Centers for Disease Control and Prevention, 2015).

FIGURE 1.1 The demographic transition.

One outcome of these processes is increasing survivorship rates as, over time, growing numbers of individuals are able to enjoy a ripe old age, albeit often experiencing the limitations of chronic disease. This process is illustrated in Figure 1.2, which portrays the progressive “rectangularization” of survivorship curves for the United States as higher percentages of individuals experience old age.

FIGURE 1.2 Survivorship curves: past and projected.

Overall, these trends have given rise to the increased importance of long-term care as a component of life in contemporary societies. This has been reinforced by a number of associated trends. First has been the geographical dispersion of the family resulting in transformation of the ways that long-term care is provided from an almost exclusive focus on geographically proximate family providing unpaid direct day-to-day care to increasing reliance on mechanisms of care from a distance (e.g., the daily calls that Mark Lincoln received from his daughter Kaylee and the manner in which she ran interference with his physicians and caregivers). Such geographical separation has provided added impetus to the development of paid formal services, including home care, home-delivered meals, visiting nurse services, and adult day services.

A second trend has been the compression of morbidity, a notion that has generated some controversy. The basic argument here is that with improved medicine and healthier lifestyles, the period of time that individuals are experiencing life-limiting effects of chronic illness gradually declines. It is suggested that this shortens the period of living with disability and hence the need for long-term care. This argument is reinforced by the emergence of a new phase of life in developed societies, often termed the third age, a period of active postretirement living during which individuals remain healthy and are able to engage in new pursuits and activities (e.g., the arts, second careers, volunteering) that were not available or possible to previous generations (Laslett, 1989; Weiss & Bass, 2002). This view is supported by evidence that each cohort of older adults tends to be healthier than the one that preceded it (Manton, Gu, & Lamb, 2006). On the other hand, there are those who suggest that increased longevity merely extends the length of time that individuals experience the most negative effects of chronic illness and extends the period of disability and need for long-term care.

A third trend that has accelerated in recent years has been the provision of long-term care in an array of new settings. During colonial times, the primary locale of long-term care was the family; those without family were generally cared for by almshouses (see Chapter 2). Since that time, the locations in which long-term care is provided have multiplied. During the Great Depression of the 1930s, the nursing home appeared as part of the long-term care landscape. This alternative flourished, to the point that today, there are close to 1.5 million nursing facilities in the United States. The long-term care continuum now includes an array of special housing options, including federally supported housing alternatives that developed from the 1960s through the early 1980s, self-contained retirement communities, assisted living facilities, continuing care communities, and comprehensive campus-like facilities providing support for all levels of needed care. These alternatives are discussed in detail in later chapters of this book.

Although there is debate about the effects of recent demographic and health status trends, there is little doubt about the increasing need for an array of long-term care options. This book is about this need and the many ways in which it is being addressed.

LONG-TERM CARE POPULATIONS

A wide range of individuals require long-term care. First are those who experience chronic health conditions, variously defined by the U.S. National Center for Health Statistics as lasting for at least 3 months and by other agencies and researchers as at least 12 months. Such conditions include arthritis and other rheumatic conditions, hypertension, heart disease, lower respiratory disease, cancer, diabetes, depression, and cerebrovascular disease. Data from 2005 show that 44% of all Americans had at least one chronic condition, and 13% had three or more (Paez, Zhao, & Hwang, 2009). The number of persons with chronic conditions is anticipated to grow to 157 million in 2020 with 81 million having multiple conditions (Wu & Green, 2000; Figure 1.3). The percentage of individuals with multiple chronic conditions is also increasing, as revealed in Figure 1.4, which documents increases in the percentage of people ages 45 to 64 and 65 and over with two or more of nine selected chronic conditions: hypertension, heart disease, diabetes, cancer, stroke, chronic bronchitis, emphysema, current asthma, and kidney disease (Fried, Bernstein, & Bush, 2012). As noted earlier, the prevalence of most chronic conditions increases with age as these conditions tend to worsen with age. This often necessitates higher levels of long-term care as impairment increases.

A second long-term care population consists of individuals living with impairment resulting from a permanent, usually untreatable defect caused by disease, injury (an amputated leg), cognitive limitation (Down syndrome—Anders would be in this category), or a congenital malformation (blindness since birth). Chronic illness and impairment result in disability, a reduction in a person’s ability to perform self-care and complete regular functions of daily living without assistance. Traditionally, disabilities are assessed through measures of functional status. These measures include tools that assess physical, cognitive, emotional, and social dimensions of functional ability. For example, the most widely employed measure of physical function is assessment of activities of daily living (ADLs), a measure initially developed during the 1960s that assesses self-care abilities with respect to eating, dressing, toileting, transferring, and continence. The measure is often employed using a four-point assessment scale: (1) totally independent, (2) requiring mechanical assistance only, (3) requiring assistance from another person, and (4) unable to perform activity (Katz, Ford, Moskowitz, Jackson, & Jaffe, 1963). This measure has been modified in a variety of different ways since its introduction, although most variants continue to use at least five of the initial measures. A second often-used measure moves beyond self-care and focuses on the ability of a person to function in ways conducive to maintaining independent living. The instrumental activities of daily living (IADLs), first introduced by Lawton and Brody (1969), assesses abilities with respect to managing money, using the telephone, grocery shopping, personal shopping, using transportation, housekeeping, completing daily chores, and managing medications. Again, there are a variety of different manifestations of this measure.

FIGURE 1.3 Projected increase in numbers of persons with chronic conditions (in millions).

Source: Wu and Green (2000, October).

FIGURE 1.4 Percentage of adults aged 45 to 64 and 65 and over with two or more of nine selected chronic conditions, 1999–2000 and 2009–2010.

¹Significantly different from 1999–2000, p < 0.05.

Note: Access data table at: http://www.cdc.gov/nchs/data/databriefs/db100_tables.pdf#1

Source: CDC/NCHS, National Health Interview Survey.

As measures of functional status have become more sophisticated and all encompassing, they have expanded to embrace measures of mental health, social engagement, and environmental participation. Classic among these more recent models is the now widely employed International Classification of Functioning, Disability and Health (ICF) disablement model of the World Health Organization (WHO, 2001; Figure 1.5). Approved for use by the World Health Assembly in 2001, this measure is based on underlying principles of universality (applicable to all people irrespective of health condition and in all physical, social, and cultural contexts), parity and etiological neutrality (avoiding either explicit or implicit differentiation among health conditions (physical or mental) by making the important shift from health status to functioning), neutrality (employing nonevaluative language wherever possible to include both positive and negative aspects of status), and environmental influence (recognizing the important role of physical environment factors, such as climate, terrain, and building design, as well as social factors such as attitudes, institutions, and laws, in determining functioning and disability). Since its introduction, there have been many different applications and adaptations of the ICF for use with specific populations and in specific situations. However, the model now provides a widely accepted framework for defining the situation of populations that tend to be in need of long-term care.

FIGURE 1.5 International classification of functioning, disability and health.

Regardless of the measures employed to assess levels of functional ability or disability, the population in need of long-term care is both diverse and growing. Indeed, the U.S. Department of Health and Human Services estimates that 70% of people turning age 65 can expect to use some form of long-term care during their lives (http://longtermcare.gov/the-basics/who-needs-care/, retrieved on January 4, 2015). The older a person grows, the more likely he or she is to need long-term care, especially women because they outlive men by about five years and consume more long-term care services. Also, persons with disability, including 69% of people aged 90 or older, are likely to consume significant long-term care resources. Persons with chronic illness and high blood pressure, many of whom are older adults, make heavy use of long-term care resources. Persons living alone (the proportion of older women living alone has risen to almost 50%) are more likely to need long-term care. Finally, the population in need of long-term care is influenced by heredity and by lifestyle factors (e.g., diet and exercise habits).

Although the aging of the population and other demographic processes are important determinants of an expanding demand for long-term care, rising demand is only a part of the problem. Equally important is consideration of the increasing demand for people, often family members, to provide long-term care in the face of multiple and competing demands. The other side of long-term care is the people whose lives are shaped and often transformed by the need to provide long-term care, both informal care (generally unpaid) received from family members, friends, and acquaintances and formal care (generally paid) provided by programs, services, and agencies.

INFORMAL CARE: FAMILIES, FRIENDS, AND ACQUAINTANCES

As former first lady Rosalynn Carter once expressed it, “There are only four kinds of people in the world—those who have been caregivers, those who currently are caregivers, those who will be caregivers and those who need caregivers” (Carter & Golant, 1994, p. 3). It is difficult to estimate the number of informal caregivers because definitions vary widely as to who a caregiver is and what informal care constitutes. Does bringing in the mail from a roadside mailbox for an elderly neighbor constitute care? How does such support equate with providing 24-hour assistance with ADLs and medical care for an aging parent? According to the National Center on Caregiving, 65.7 million caregivers (29% of the U.S. Adult population) provide care to someone who is ill, disabled, or aged (Family Caregiver Alliance, 2012). Of these, 43.5 million adult caregivers care for someone 50 years of age or older and 14.9 million care for someone who has Alzheimer’s disease or another dementia. AARP reported that in 2009, about 42.1 million family caregivers in the United States provided care to an adult with limitations in daily activities at any given point in time, and about 61.6 million provided care at some time during the year. The estimated economic value of their unpaid contributions was approximately $450 billion in 2009, up from an estimated $375 billion in 2007. More detailed descriptions of the characteristics of these caregivers, the challenges they face, and the rewards they receive from caregiving are provided in Chapters 3 and 4. Here, we emphasize that informal care from families and friends is likely to remain the primary source of long-term care support for the foreseeable future. The majority of caregivers are women (66%), 34% of whom care for two or more people (Family Caregiver Alliance, 2012). The average age of caregivers is 48 years, an age that is rising steadily. Many caregivers are themselves growing older, with an average age of those caring for persons 65 and older being 63 years. Along with the rising age of caregivers, the average number of hours per week devoted to caregiving increases with age.

Providing care to a person in need is not without cost. There has been an ever-expanding literature on caregiver burden and the economic and social costs of providing long-term care. These costs include lost wages, reduced potential for professional advancement, impaired health, social isolation, clinical depression, and other manifestations of emotional distress (Adelman, Tmanova, Delgado, Dion, & Lachs, 2014). In the past decade there has been growing awareness that despite the stresses and strains, there are benefits to becoming a caregiver: an enhanced sense of purpose, feelings of competence in the role of caregiver, being glad to give back to the receiver, personal growth, and a sense of meaningfulness in life (Raschick & Ingersoll-Dayton, 2004; Savundranayagam, 2014). It is also increasingly recognized that the view of caregiving as a burden is culturally based: in some cultures, the provision of care is viewed as a normative aspect of life. Indeed, in their work with five reservation-dwelling tribes in the American Southwest, Hennessey and Johns (1996) discovered that caregivers were more concerned about their work and other commitments interfering with their caregiving rather than caregiving interfering with their work and other aspects of their lives.

FORMAL CARE: THE RISE OF SERVICE SYSTEMS, THE AGING NETWORK, AND CORPORATE CARE

Although the bulk of long-term care is provided by family members, the long-term care landscape has been supplemented by the development of formal (paid) long-term care. As the difficulties and stresses of family caregiving gradually increase with the deteriorating condition of the care recipient, the tendency for informal care to be supplemented by formal care resources also increases. Assistance from family members with shopping, housekeeping, mowing the lawn, changing lightbulbs, and fixing the faucet gradually becomes supplemented by participation in Meals-on-Wheels programs, three visits a week from a home care worker to provide help with bathing, or support from an array of community-based services.

Development of systems of formal long-term care was very much a feature of 20th-century Western culture. Stimulated by the Social Security Act of 1935, which provided federal resources to facilitate the financial support of older adults and those in need, the situation in the United States paralleled the emergence in many developed nations of support systems for increasing populations of aging and disabled individuals. A major reinforcement was the passage of the Older Americans Act in 1965 and the creation of Medicare and Medicaid, programs providing funding for medical care. Amendments to the Older Americans Act in 1973 created a system of long-term care service delivery by forming Area Agencies on Aging and what has come to be known as the “Aging Network.” This involved the creation of 56 State Units on Aging and a nationwide system of 629 Area Agencies on Aging, 244 tribal organizations, and two native Hawaiian organizations. Under the aegis of these administrative units, the array of services and resources supporting long-term care has proliferated throughout the nation to include adult day care, adult protective services, family caregiver support, help for grandparents raising grandchildren, guardianship, health promotion, home care, legal services, nutrition, ombudsman programs, personal care attendants, and transportation. Many of these services are delivered in individual communities through local senior centers. An elaborate infrastructure and network of social services is now available to persons requiring long-term care support at home.

RELOCATION AND THE EMERGENCE OF RESIDENTIAL ALTERNATIVES

Many current programs and services reflect a priority that evolved during the 1980s on aging in place—enabling people to remain at home in a familiar setting (Rowles, 1993; Tilson, 1990; see Chapters 8, 9, and 10). Indeed, a priority on aging in place has evolved into a societal policy mantra even though there has been a dawning realization that this may not be the optimal situation for some older adults or persons with disabilities.

There comes a point when the combined efforts of families and community-based services are no longer sufficient (Robison, Shugrue, Porter, Fortinsky, & Curry, 2012). Often a tipping point occurs when the long-term care recipient becomes incontinent, his or her level of cognitive impairment is such that the care recipient becomes a danger to himself or herself, or the primary caregiver can no longer cope (Ryan & Scullion, 2000). At this point, and sometimes in anticipation of this point, it becomes necessary to consider alternative settings for the provision of care. In parallel with community-based options, a smorgasbord of residential and health care specialized environments has developed.

Gradually, over time, the nursing home emerged as an institutional alternative to family care, with the number of facilities in the United States rising from about 1,200 with 25,000 beds in 1939 to 15,465 nursing facilities with 1,646,302 beds in 2011 (Kaiser Foundation, 2015). Further impetus to this option was provided by the previously mentioned Older Americans Act and the introduction of Medicare and Medicaid. The result was expansion of the nursing home industry accompanied by increasing corporatization of this long-term care option.

In parallel with this trend, and partially in response to the abysmal circumstances of many older adults (in 1959 poverty among persons 65 and older was 35%), came a growing interest in residential options for older adults. Over the past few decades, alternatives between the extremes of living with family members and nursing home residence proliferated (Exhibit 1.1). These options can be arrayed along a continuum addressing a progressively increasing need for service and health care assistance. From the 1950s through the 1970s, federally supported housing options were developed, including public housing, Department of Housing and Urban Development (HUD)-supported Section 8, Section 236, and Section 202 housing (often constructed by faith communities and nonprofit organizations that received low-interest loans (Figure 1.6). The focus was on providing affordable housing to older adults and persons with disabilities (see Chapter 9). Change in federal policy during the 1980s led to significant curtailment of funding for new construction of such housing. As the original residents aged in place in these settings and grew increasingly frail, a need arose for supportive services.

EXHIBIT 1.1 Examples of the Growing Array of Residential Settings of Long-Term Care

FIGURE 1.6 Christ Church Apartments, Section 8 Senior Housing, Lexington, Kentucky.

Source: G. D. Rowles.

The need to provide more services to aging populations in federally subsidized housing was complemented by the emergence of a new alternative funded by the private sector—assisted living (Golant & Hyde, 2008; Wilson, 2007; see also, Chapter 10). The idea of assisted living is based on maximizing independence but providing supportive services within a model of care in which residents have not only private and public space and maximum autonomy in controlling their daily lives and care but also ready access to both routine and specialized services. Unfortunately, although creative options abound, alternatives such as assisted living still remain prohibitively expensive for many people and are not available in many communities (Golant, 1992).

REVISITING THE LONG-TERM CARE CONTINUUM

The long-term care needs of persons who are aging or living with disability or in other situations requiring assistance over an extended period are constantly evolving as their capabilities and circumstances change. Long-term care involves far more than a set of services or institutional settings and should be considered in the context of the life course. When we are born we become part of a convoy of individuals who nurture us (Antonucci & Akiyama, 1987; Antonucci, Berditt, & Akiyama, 2009). Initially, this convoy comprises our parents, siblings, and other relatives as well as our pediatrician, the people who support us in our faith community, and the friends we accumulate as we progress through childhood. The convoy tends to expand as we continue our education or pursue a career and as our lives become intertwined with an ever-broadening population of colleagues and associates. People also fall away from the convoy as our grandparents and eventually our parents die, as we change careers, as we relocate, and as we grow older. Interwoven throughout this book are ways the convoy changes, the processes involved in this change, and the ways in which our progress is supported at different times by different human resources and environmental contexts. Progress along the continuum is rarely completely unidirectional. Rehabilitation, introduction of a new medication that counters impairment, or a psychological intervention may reverse the course.

In developed societies, the aspiration is for a continuum of care that is maximally flexible, accommodates to changing circumstances, and provides for an optimum quality of life over an individual’s life course. Ideally, there should be no gaps—no circumstances in which an individual in need falls between the cracks of the long-term care system. In reality, the system is fragmented, constantly in transition, and, for many caregivers, remains extremely difficult to negotiate. Typically, each individual’s progress along the continuum involves phases of moving into and out of different types of both informal and formal long-term care.

THE SOCIAL CONTEXT OF CONTEMPORARY LONG-TERM CARE

Quality of life is far more than quality of care. This distinction has become increasingly apparent during recent decades as the long-term care system has evolved in the United States. Emphasis on quality of care became an important focus during the second half of the last century, in part as a result of society’s response to a number of scandals that affected segments of the formal long-term care continuum. For example, during the mid-1970s there was a major concern with corruption and fraud in the operation of nursing homes and well-publicized reports documented major deficiencies in the quality of care (Mendelson, 1974; United States Senate, 1974). Public outcry led to a tightening of regulations and renewed effort to improve the quality of institutional long-term care.

Although these changes resulted in some improvement in basic physical care and a reduction in levels of corruption and fraud in the burgeoning nursing home industry, a 1986 Institute of Medicine study found that nursing home residents still received “shockingly deficient” care. In the following year, Congress enacted the Omnibus Budget Reconciliation Act (OBRA ’87), also known as the Nursing Home Reform Act. Passage of this law heralded a gradual process of transition in nursing facility care, representing expansion from a primary concern with physical care to increasing emphasis on quality of life. Significant components of this legislation included requirements for comprehensive assessment of the condition of every person admitted and development of a written plan of care; annual assessment of ADLs for all residents; preadmission screening and annual resident reviews to detect mental illness or mental retardation; and mandated services (physician, nursing, rehabilitative, pharmaceutical, dietician, dental, and medically related social services). Increased emphasis was placed on resident rights. When admitted to a nursing home, residents were to be informed both in writing and verbally of their legal rights, which include the right to choose their own physician, be free from chemical and physical restraints, enjoy privacy and confidentiality of personal and medical records and protection of personal funds, voice grievances without fear of reprisal with prompt attention to resolution of those grievances, organize and participate in resident groups (with family members able to meet in family groups), and have access to federal or state surveys of the facility and to a local or state long-term care ombudsman. The OBRA ’87 legislation also provided for improved staffing and training by mandating at least one registered nurse (RN) on duty 8 hours a day, 7 days a week, and a licensed nurse on duty 24 hours a day, 7 days a week. Facilities with more than 120 beds were to employ at least one full-time social worker, and nurses’ aides were to undergo at least 75 hours of approved training and pass a competency evaluation. The legislation also introduced federal requirements for regular surveys and certification of facilities. Moreover, states were to conduct unannounced standard surveys of nursing homes at least once a year, which included an audit of a sample of resident assessments and interviews with residents to determine the quality of care they were receiving. Finally, the legislation introduced procedures for enforcement and sanctioning of noncompliant facilities.

This detailed example of a piece of long-term care–related legislation provides one historical illustration of the way in which the system of long-term care in the United States has evolved as the need for and scale of supportive intervention has grown. The emergent alternative of assisted living is seeing a similar transition from an initially unregulated option to an increasingly regulated component of the long-term care continuum. At this point, most states have developed their own definition of assisted living with distinct regulations with regard to the licensing and monitoring of such facilities. The result is a patchwork of guidelines shaping the form of this component of long-term care.

WIDENING HORIZONS

Recognition that an integrated and person-centered long-term care system must focus on maximizing quality of life for both care recipients and care providers at all points along the long-term care continuum has been an important stimulus to evolutional change. Person-centered care is respectful of and responsive to each person’s needs, preferences, and values, and ensures that care recipients’ own values guide all decisions affecting their lives. This has involved both a rethinking of the underlying philosophy of care and a broader definition of what we mean by long-term care. As Kane (2001, p. 295) wrote: “Bluntly put, LTC [long-term care] policies and practices in the United States are flawed, particularly for those LTC consumers who are old.” In an indictment of the contemporary system at the turn of the century she noted that there was undue emphasis on nursing home and institutional care over community-based and home care alternatives. She noted particularly skimpy geographical availability of home care alternatives and services in many localities and rued the focus on quality of care rather than quality of life. In part, Kane argued, this stemmed from overemphasis on safety and health. At the core of her argument was advocacy for the need for a complete reorientation of the way in which long-term care is conceptualized:

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