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TAKING CARE: ETHICAL CAREGIVING
IN OUR AGING SOCIETY


Table of Contents

The President's Council on Bioethics
Washington, D.C.
September 2005
www.bioethics.gov

Dilemmas of an Aging Society
Chapter 1

Modern medical science has been an unrivaled benefactor of humankind-providing cures for terrible diseases, palliative care for the sick and suffering, and longer and healthier lives for the vast majority of us. Most citizens in developed countries can now expect to live into their seventies and eighties, with many living into their nineties and beyond. Not only are people living longer, but they are staying healthier longer, with a real chance to enjoy their "golden years." Even some of the chronic disabilities of old age are in decline,1 as medical science and improved risk management continue to succeed in extending the disability-free stage of the natural life span. An ever-growing cohort of people enjoys today a period of true retirement, when the obligations of work and raising children are past, when body and mind remain in health, and when there's still time to pursue or renew the avocations of life.

Yet these great accomplishments have also brought new challenges. No one, of course, would want to "turn the clock back," but the problems accompanying medical progress are real as well as perplexing. Consider that around the world-and especially in the United States and other advanced industrial democracies-there is increasing concern about the "graying of the population," the "aging of society," and the "retirement of the baby boomers." This concern takes many forms-economic, ethical, social, and civic-and it promises to loom large in our private lives and public debates. Many of the questions center around caregiving: Who will need it? Who will do it? Who will pay for it? And perhaps most importantly, what kind of care is owed to those at the end of life?

When thinking about caregiving, we have concerns about pension insecurity, rising costs of health care, shortages of available caregivers, and the insufficient number of good nursing homes. We have concerns about the potential neglect or abandonment of the elderly, and the possibility of welcoming euthanasia or assisted suicide as ways to "solve the problem" of lingering old age. Many of us face decisions about forgoing careers in order to act as caregivers, or spending less time with young children in order to care for aged parents, or using funds set aside for a daughter's college tuition in order to pay for a father's nursing home. In short, we worry about whether we can afford to care, whether we will be willing and able to care, and what we must sacrifice in order to care for the elderly. And many of us in the middle of life, thinking about growing older ourselves, fear the loss of our powers, the deprivations and loneliness that often accompany old age, and the prospect of being a burden on those we love most.

Thus, while people are living healthier into old age and doing so on a mass scale, there remain many difficulties, both psychic and physical, that eventually come with growing old. Precisely because people are living longer, many are living long enough to suffer age-related degenerative diseases like Alzheimer's and Parkinson's-diseases that involve long-term decline and thus the need for long-term care. And precisely because many individuals have taken advantage of modern freedom's opportunities for education, careers, and geographic mobility, many elderly persons will live in greater isolation from loved ones, separated from children and grandchildren who have settled elsewhere or whose lives are defined primarily by work and school. Smaller and less stable families will likely compound these problems, as the burdens of caregiving fall on one or two adult children, who, in many cases, are called upon to care for parents who did not always care well for them. And many among the growing population of childless elderly will have no relatives at all to look after them. Taken together, the need for family caregivers will almost certainly increase while the availability of family caregivers may only decline. And the same difficult choices and trade-offs faced by individuals and families will confront society as a whole: the needs and plight of the elderly will only seem more urgent; the costs of medical and long-term care will only increase; and the need to balance the obligations of caregiving with other civic and human goods will only seem more difficult, even as America becomes wealthier.

Before these difficulties we are hardly resourceless. With our science and medicine, we are working to combat the ailments and limitations that aging brings, seeking to reduce or remove the disabilities that longevity has until now brought with it. We also look to insurance plans and public policies to make aging affordable and secure, whether by increasing Medicare benefits or creating retirement savings accounts or providing private long-term care insurance. And we use civil rights law to battle against "age discrimination," to ensure that old people are not treated as second-class citizens in employment. All of these approaches and efforts are necessary and welcome.

But they are also limited, and limited in principle. For senescence is best understood not as a problem but as an inescapable condition-as part of what it means to be human and to live in a human society. Absent awareness of this fact, we will be tempted to believe that medicine, social policy, economics, or law can solve the problems of aging, or that technological and social progress can make the dilemmas of growing old and approaching death less serious than they always were and always will be. Or else, preferring denial, we will be tempted to live as if we will be young forever, or as if the elderly among us will take care of themselves, or as if the seeming "pointlessness" of the end of life means that neglecting the elderly is nothing to worry about.

In the end, however, aging and dying-even with the progress we can still reasonably expect from medicine and social change-will not yield to either the genius of the manager or the utopian hopes of those who pretend that, by change of attitude, old age is somehow avoidable. Good public policy matters profoundly in this area, but even the best policies will never make aging, caregiving, and dying easy. As individuals and as a society, we will need deeper wisdom and resources of character if we are going to age well in the years ahead. We will need greater ethical reflection on what the young owe the old, what the old owe the young, and what we all owe one another. And we will need prudence in designing effective public policies and in making loving decisions at the bedside, so that we accept the limits of modern medicine and economic resources while never abandoning conscientious and compassionate human care.

The aim of this chapter is to contribute, in a concrete if necessarily limited way, to our understanding of the social question of what the "graying of the population" means for our society and the human question of what aging and dementia tell us about ourselves, as finite creatures in need of care.

The chapter has three major parts: Starting from a social perspective, we first present an overview of our aging society, looking at certain demographic, medical, and sociological trends; we try to understand what is novel about our current situation, and why we might be facing a "crisis" in long-term care. Second, we look at individual aging, to understand what it means to age well, what it means today to grow up and grow old within the cycle of the generations. Finally, we look at the special challenges and lived experiences of age-related dementia, a debility that in the coming decades will only become more common as people live regularly into their eighties and beyond. Our purpose here is to diagnose the dilemmas now before us, so that policymakers and civic leaders can seek to ameliorate some of the problems ahead and avoid the worst kinds of miseries and abuses. But by reflecting on the character of aging itself, including those aspects that cannot be "solved" but simply confronted and endured, we also want to insist that there is an inescapable need for care and caregiving, to be offered with as much equanimity, virtue, and mutual support as individuals, families, and communities can muster.

I. Aging and Contemporary Society

How we care for the dependent elderly will test whether modern life has not only made things better for us but also made us better human beings, more willing to accept the obligations to care and more able to cope with the burdens of caregiving. Put simply: Can a society that values self-reliance, personal freedom, and careerism reconcile itself to the realities of dependence, diminished autonomy, and responsibility for others? To consider this broad question, we must first examine some sociological and demographic facts.

A. The Aging Society

In the years ahead, the age structure of most advanced industrial societies will be unlike anything previously seen in human history, with both the average age of the population and the absolute number of old people increasing dramatically. To think responsibly about the social and ethical challenges of aging and caregiving, we need some sense of this new demographic picture and what it will mean for crucial social institutions and ordinary families. Although our focus is on the United States, these same trends are visible-and often even more dramatic-in Europe and Japan.

Because demography employs a series of classifications, we need first to examine how we tend to classify people as "old." In America, we still look to age 65 as the cut-off between middle age and old age, between work and retirement, between income and pensions, between private health insurance and public health care. The place of 65 in the public imagination and in public policy is, however, largely a social construct. The designation of 65 as the age of retirement deserving of social support traces back to a decision by the 19th-century Prussian statesman Otto von Bismarck, who thought it unlikely that many people would live beyond this age to become burdens on the state. Our own national system of social security, put in place in 1935, adopted the same age, also with little expectation of many people living much beyond this point.

Today, as we are all well aware, the situation is quite different, and our understanding of what it means to be "old" has become more nuanced. There are the "young old," who despite having reached the official retirement age of 65 continue to live vigorous and productive lives. Then there are the "old old," who have perhaps begun to slow down but still lead lives of relative health and activity. And, finally, we now speak also of the "oldest old," or those who are 85 years and over, a group that tends to be mainly or wholly dependent for their care on others. These new labels and terms are, moreover, less about chronological age per se than about a person's bodily and psychological condition. A 65-year-old might be either among the "young old" in his well being and activity levels or, because of the afflictions of disease, already in experiential terms among the "oldest old."

Whatever its limitations, however, the magic number of 65 still provides a window of understanding into what's new about our condition. Life at 65 today is often different from what it was a century or half-century ago. For one thing, living to 65 and beyond is now commonplace, when in the past it was a rare occurrence. During the last century, the average American life expectancy at birth rose from 47 years in 1900 to 77 years and climbing in 2000.2 According to a study published in 2000, 78 percent of Americans live past their 65th birthday;3 and this figure is rising, from 69 percent for those born in 1925 to an estimated 80 percent for those born in 1955.4 Moreover, living at65 and beyond is usually a much different experience than it used to be. There is a much greater likelihood of being relatively healthy, with major and potentially deadly diseases (like heart disease or kidney disease) under better control and chronic ailments (like arthritis or orthopedic problems) better managed through pain-relieving medication or joint-replacement surgery. We know much more about what it takes to stay healthier longer, and many people have the good fortune and good sense to take advantage of this knowledge.

But if the "young-old" are younger than their predecessors, the "old-old" and the "oldest old" often pay the delayed price of healthier longevity. A very significant and growing number of people suffer (or will suffer) years of enfeeblement, disability, and dementia, eventually incapable of caring for their own elementary needs. As we take stock of the changing demography of American society, therefore, we need to keep both these dimensions of aging in mind: the unchanging and unavoidable decline that comes with old age and the fact that being old today usually does not mean utter debility. The defining characteristic of our time seems to be that we are both younger longer and older longer; we are more vigorous at ages that once seemed very old and we are far more likely to suffer protracted periods of age-related disability and dependence because we live to ages that few people reached in the past.i

However one defines "old age," there is no question that the age structure of American society is changing, the result of increasing longevity, lower birthrates, and the special anomaly known as the "baby boom"-the great increase in the birth rate between 1946 and 1964 that has produced an unusually large cohort of Americans now between the ages of 40 and 60. These factors guarantee that the dramatic shifts in age structure seen in the twentieth century will continue through at least the middle of the twenty-first century. In the year 1900, there were 3.1 million Americans over the age of 65 (or 4.1 percent of the population). By mid-century, there were 12.3 million people over 65 (or 8.1 percent of the population). In 2000, 35.0 million people were over 65 (or 12.4 percent of the population), a number that is projected to rise to 71.5 million by 2030 (or 19.6 percent of the population) when the youngest baby-boomers have passed age 65.5 The rising average and median ages in the population are due also to fewer births. Not only are the baby boomers aging, but they had fewer children than their parents, and at present the American birthrate remains low by historic standards (though it is significantly higher than most of Europe and Japan and modestly higher than it was in America in the 1970s and 1980s.)

Moreover, and perhaps more significant for the subject of long-term caregiving, the oldest of the old (people age 85 or older) are currently the fastest growing segment of the population. In 2004, according to estimates by the U.S. Census Bureau, an estimated 4.9 million Americans were age 85 or older.6 That number is expected to increase to 6.1 million by 2010 and to 9.6 million by 2030.7 Over a somewhat longer term, the trends are even more startling: Between 2000 and 2050, the U. S. Census Bureau expects the population of Americans age 45 to 54 to grow moderately from 37 million to 43 million; but, in the same period, the population age 55 to 64 will grow from 24 million to 42 million; the population age 65 to 74 will nearly double, from 18 million to 35 million; the population age 75 to 84 will more than double, from 12 million to 26 million; and the population age 85 and above will more than quadruple, from 4 million to 18 million.8

Projected Population Age 45+, by Age: 2000 - 2050

(Graphic used by permission of AARP Public Policy Institute. )

At present, roughly one third of Americans will live to age 85 and beyond, and that fraction is likely only to increase. Yet this greater longevity comes with many greater burdens. After age 85, only one person in twenty is still fully mobile; and roughly half the people over 85 will suffer major cognitive impairment or dementia as part of their final phase of life. At present, according to the Alzheimer's Association, an estimated 4.5 million Americans have Alzheimer's disease; by 2050, the number of Americans with Alzheimer's disease is estimated to range between 11 million and 16 million9-unless a cure or prevention can be found soon enough to change this grim forecast. (We will be discussing such medical efforts, which are not without hope of success, below.)ii

This changing age structure will obviously have significant economic, social, and political effects-though what they are cannot be fully predicted in advance. The mass geriatric society will test the adequacy of our caregiving institutions (such as nursing homes) and the solvency of our caregiving programs (such as Medicare). We can hardly do justice to this complicated set of social and policy questions here, but a few salient facts seem worth noting, just to paint a picture of some of the changes and developments that we can expect in the years ahead:

  • In 2000, only one state (Florida) had a population with at least 17 percent of the population aged 65 and older. By 2030, 44 states will have populations with at least 17 percent of the population aged 65 or older.10
  • According to a recent estimate, 35 percent of the annual federal budget goes to programs benefiting older persons. If these programs continue unchanged, this percentage will only increase.11
  • By the year 2020, it is estimated that nearly 157 million Americans will have some form of chronic illness, up from 125 million in 2000.12
  • The estimated cost of Alzheimer's disease to Medicare and Medicaid totaled $50 billion in 2000 and is projected to be $72 billion in 2010.13i

In a society with more elderly citizens and fewer younger workers, these changes will put ever-greater strain on programs like Medicare, Medicaid, and Social Security. When Medicare was introduced in the 1960s, only 9 percent (seventeen million) of the population was 65 or older, and only 0.5 percent (one million) was older than age 85. By the time the baby-boom generation starts turning 85 in about 2030, Medicare-as it is now constituted-would be paying for the care of an estimated 80 million Americans (22 percent of the population), including 9 million people who are 85 and older, nearly all of them with expensive health care needs. According to projections assuming a "middle costs" scenario, Medicare will grow from 2.4 percent of GDP today to 8.3 percent in 2050; and Medicare, Medicaid, and Social Security will nearly double as a share of the nation's economy by 2035. Moreover, the desire to expand these programs and to add new benefits will only become more powerful just as the capacity to pay for them is tested.

One of the greatest economic and social challenges will be funding long-term care-the provision of daily medical and personal assistance to individuals incapable of looking after themselves, ranging from in-home nurses to adult day-care services to full-time nursing homes. These services will grow more necessary in the years ahead and probably more costly, but they are not at present covered under Medicare. Medicaid pays a large percentage of the costs of long-term care for the poor; arguably, it has become in large measure a de facto long-term care program, as many middle-class people spend down their assets or shift them to relatives in order to become eligible for Medicaid. As a result, the strains on the system are already great, and getting worse. As physician and long-term care specialist Joanne Lynn points out: "The services needed during the last few years of life are expensive. In fiscal year 2000, Medicaid paid for 45 percent of the $137 billion annual cost of institutional long-term care. The Congressional Budget Office forecasts that the cost of long-term care, roughly $123 billion in 2000, will reach $207 billion in 2020 and $346 billion in 2040. These extraordinary costs risk bankrupting state budgets, which currently devote 20 percent of expenditures to Medicaid."14 One likely response to these rising Medicaid costs will be demands to include long-term care coverage as part of Medicare, especially as middle-class persons are squeezed between providing for their parents and their children and forced either to forgo work to care for their elders at home or to pay the rising costs of professional or institutional care. This creation of a long-term care benefit would likely make Medicare's existing solvency problems far worse.

The effects of America's changing age structure are not limited to the pension or health care systems, important as these are. The coming of the mass geriatric society will affect every dimension of human and social life: the culture of the workplace, the consumer market, the housing market, and, most deeply, the rhythm and character of family life. We will live differently, work differently, and perhaps even think differently in a society in which the needs of the old become ever more dominant. Our politics might change as well, especially if older people increasingly vote their class interests as elderly; in the extreme, there is the unwholesome possibility of a "war between the generations," as people insist on securing their own advantage with little regard for the intergenerational common good and with no organized voice to speak up for the rising generations.

These broad social changes in how we live will be accompanied by radically new patterns in the end of life. New trajectories of illness and death will likely predominate in the coming decades, and new questions will arise about who will care for those suffering from chronic disabilities. If we are to understand what it means to live in an aging society, we must take up these two crucial issues-namely, how we die and who will care.

B. The Trajectory of Chronic Illness and Death

In addition to radical changes in the overall age structure of society, a growing percentage of the elderly are living through longer periods of dependence and disability, including, and especially, long periods of dementia. This rise in long-term disability and dependence is, as already noted, the unintended consequence of our success in preventing, curing, or managing the earlier and more acute causes of death that once predominated. But there is more. These advances have also changed the trajectory of chronic illness and-most important-altered the leading causes of death. Because we live longer, we die differently; and because medicine can better confront the illnesses that would kill us quickly, we are far more likely to die after a period of protracted physical disability and cognitive impairment.

In 1900, the usual place of death was at home; in 2000, it was the hospital. In 1900, most people died from accidents or infections without suffering a long period of disability. In 2000, people suffered, on average, two years of severe disability on the way to death. Acute causes of death (such as pneumonia, influenza, and septicemia) are in decline; prolonged causes of death from age-related degenerative diseases (such as Alzheimer's, Parkinson's, and emphysema) are on the rise. Already today, as Joanne Lynn points out, "Most Americans die with failure of a major organ (heart, lungs, kidneys, or liver), dementia, stroke, or general frailty of old age. . . . [T]hese conditions lead to long periods of diminished function and involve multiple unpredictable and serious exacerbations of symptoms."15 Living longer also means suffering numerous chronic but not deadly conditions-such as arthritis, hearing and vision loss, dental decay, bowel problems, and urinary difficulties. Frailty becomes both more extended and more commonplace, which means that "the body's systems have little reserve and small upsets cause cascading health problems."16

A 2003 study by researchers at the Rand Corporation sought to explain, organize, and quantify the various "trajectories of chronic illness," in an effort to describe how the character of aging and dying has changed dramatically over the last many decades and to show how unequipped we are for the caregiving challenges ahead. To envision the caregiving needs of elderly people who are sick enough to die, the study classified them into the three most common groups, using the trajectory of decline over time that is characteristic of the major type of disease or disability.

The first group dies after a short period of evident decline; this is the typical course of death from cancer. Many malignancies are, of course, curable by surgery, radiation, and chemotherapy. And even many people who will die of cancer may be comfortable and function well for a substantial period, until the illness becomes overwhelming. Thereafter, the patient's status deteriorates rapidly, especially in the final weeks and days before death. Death usually occurs within a year. Roughly 20 percent of all deaths are now of this type.

The second group dies following several years of increasing physical limitations, punctuated by intermittent acute life-threatening episodes requiring hospitalization and vigorous intervention; this is the typical course of death from chronic cardiac or respiratory failure (for example, coronary artery disease or emphysema). Many of these patients are at first little handicapped in daily life. But as the disease progresses, "from time to time, some physiological stress overwhelms the body's reserves and leads to a worsening of serious symptoms. Patients survive a few such episodes but then die from a complication or exacerbation, often rather suddenly."17 Roughly 20 percent of all deaths are now of this type.

The third-and already the largest-group dies only after prolonged dwindling, usually lasting many years; this is the typical course of death from dementia (including Alzheimer's disease or disabling stroke) or generalized frailty of multiple body systems. This trajectory toward death is gradual but unrelenting, with steady decline, enfeeblement, and growing dependency, often lasting a decade or longer. In the end, an overwhelming infection, a stroke, or some other insult that a severely weakened body cannot handle becomes the proximate cause of death. Roughly 40 percent of all deaths are now of this type.iii

Typical Chronic Illness Trajectories

Living Well Graph

Copyright RAND Corporation, from Living Well at the End of Life, 2003. Reprinted with permission.

The Rand study highlights the single most dramatic and socially significant change in how we Americans die: four in ten of us die only after an extended period of worsening debility, dementia, and dependence. To be sure, most people over 65 at any given time are still healthy. But as the cohort ages further, hundreds of thousands slip into protracted dotage and feebleness, needing protracted long-term care. And virtually every American family will be affected-indeed, is already affected.

Consider this implication. Every married couple, each with two still living parents, may expect to be involved with or even fully responsible for the care of at least one and, more likely, two of these four parents who will live out their last five to ten years in an increasingly enfeebled or demented condition, incapable of looking after themselves.iv And, because there is no reversing the disability, the better they are cared for, the longer they will be in need of yet more expansive (and often expensive) care. Later in life, close to half of these caregiving children will themselves be in need of similar long-term care.

C. The Availability of Caregivers

Dependence means being dependent on others-on family members, professional caregivers, and caregiving institutions. One's level of debility shapes one's level of dependence: Some people require assistance with only the most physically or mentally demanding tasks-like cleaning the house or managing investments. Others require help with daily activities-like preparing meals and paying bills. But those with advanced dementia and grave physical illness require assistance with the most basic activities of daily life-bathing, toileting, dressing, and staying safe. Of course, those who suffer "prolonged dwindling" progress through these stages of increasing dependence. And this raises a major social question: As the incidence of dementia and debility increase in the years ahead, who will provide such caregiving for those who need it? And what burdens-economic and personal-will such caregiving impose on caregiving individuals and on society as a whole?

1. The Present Realities of Caregiving.v

Until now, unpaid family caregivers have supplied the bulk of long-term care. In a national survey conducted in 2000, more than a quarter of adult Americans reported that they had provided care for disabled family members during the past year; that translates into more than 50 million volunteer caregivers.18 The federal Administration on Aging estimated that over 22 million Americans are providing such care at any one time.19

Within families, the practice of caregiving varies, but the responsibility falls mainly on women:

For married elders, the first one to develop an eventually fatal chronic illness can usually rely on the spouse for most of the direct care needed. In a study of all caregivers assisting people age sixty-five and older, spouses accounted for 24 percent, daughters for 20 percent, and sons for 6 percent, meaning that immediate family members are 50 percent of all caregivers. The onset of illness in the caregiving spouse or in a widowed or unmarried elder often precipitates a crisis for the rest of the family, especially for daughters and daughters-in-law, who most often assume the role of caregiver.20

According to a 1999 study, the average length of time spent on family caregiving was eight years, with a third of respondents providing care for ten years or more.21 Most family caregivers serve out of love and loyalty, and most of them find caregiving meaningful and rewarding.

But the challenges for family caregiving are increasingly weighty, and the availability of unpaid family caregivers is diminishing, in part because greater opportunities for women in the work force leave fewer people free for volunteer caregiving, and in part because of smaller family size and higher divorce rates. Single elderly individuals often have to rely on paid care, and even when children can provide some care, they often find they need additional paid help. The average caregiving load is eighteen hours of direct services per week; for those who care for persons needing assistance with two or more activities of daily living (moving around, toileting, feeding and dressing), the average rises to forty hours per week. Yet most family caregivers also hold paying jobs, and the demands of caregiving compel most of them to rearrange their schedules, work fewer hours, or take unpaid leaves of absence. In addition, caregiving work can and does cause health problems for the caregivers.22 The average unpaid family caregiver is 60 years old, and many already have chronic illnesses of their own.

2. The Future Availability of Caregivers.

In her recent book, Lynn cites a number of reasons why caregiving for the elderly is so much more challenging today than it was in the past, and why those challenges are likely to grow even more daunting in the future.

First, medical advances have enabled elderly and frail patients to survive much longer with serious chronic illness and disability than they could in the past. The patient's frailty, and the presence of multiple illnesses and disabilities, may necessitate many different kinds of care, including medication, cleaning, feeding, doctor's visits, trips to the hospital, physical therapy, etc. The caregiver's responsibility to provide some of these services and to supervise others may last for years. Future medical advances are likely to enable elderly patients to live even longer with an even greater variety of chronic illnesses and disabilities.

Second, families are smaller now, so that elderly patients on average have fewer descendants to rely on for care. In the past, there were few surviving grandparents, and they lived in large extended families with many potential caregivers. Now the ratios are changing, and an increasing percentage of the disabled elderly find themselves without any living relatives: it is estimated that, by 2020, 1.2 million people aged 65 or older will have no living children, siblings, or spouse.23 The Institute for Health and Aging reports that, in 1990, for each person over 85 years old, there were 21 people between the ages of 50 and 64, the prime years for family caregiving; in 2030, for each person over 85 years old, there will only be 6 people between 50 and 64.24

Third, in the past, the typical family caregiver was a woman who did not work outside the home, young enough to be able to care for a sick parent alongside her own children; and the typical elderly patient did not live very long with serious disability. Today's-and tomorrow's-caregivers will typically have jobs outside the home, unless they are ill or disabled themselves. Such working family caregivers often have to give up years of income, or accept less pay or advancement, in order to care for their elderly family members for extended periods. Caring for elderly relatives will often come into competition with raising a family of one's own; already, women spend as long in caregiving for adult family members as in caring for children.25 In addition, because the elderly infirm are living longer, the potential caregivers among their next of kin (especially spouses and children) are likely to be older themselves, and hence more prone to illness and less capable of the hard work required by care of the elderly. All these factors make family care of the elderly more costly, more challenging, and more burdensome to those providing the care.

Fourth, it does not seem likely that an increase in paid caregiving will be able to alleviate the growing strains on family caregivers. To begin with, there is an ever-shrinking pool of workers available for paid home health care. Home-care nursing used to be an important opportunity for steady employment among women who lacked advanced education and other skills, and especially among immigrants. But several factors have combined to reduce the availability of home-care aides and nurses, including the strenuousness of the work involved, compensation barely above minimum wage, difficult relationships with patients, language barriers, the lack of health insurance and other benefits, and hindrances to immigration. To reverse this trend, concerted efforts will be required to improve the working conditions, wages, and advancement opportunities of paid home-care providers. Without such costly improvements, we are likely to see a serious shortage of paid care workers even as the supply of unpaid family care-providers shrinks (for the reasons we have cited). Penny Hollander Feldman estimates that by 2010, when the baby boomers begin to reach old age, the pool of middle-aged women able and willing to provide basic elder care services, whether in nursing homes or at home, will be substantially smaller than it is now.26 In addition, an ongoing shortage of trained nurses is likely to be exacerbated in the future; the number of U.S.-educated nursing school graduates who took the licensing examination for registered nurses fell by 25 percent between 1995 and 2002,27 and 75 percent of all hospitals already have vacancies for nurses.28 It would be a tragic irony if our greater opportunities for individualistic success have produced a world more in need of caregivers than ever, but one that has lost its way of generating them.

3. A Caregiving Crisis?

There is always a danger of declaring a social crisis prematurely, especially in the face of many unknowns. Indeed, as we think about the socio-economic dimensions of the challenge of caregiving, we cannot ignore the fact that we are, as a society, much wealthier than previous generations, with some reason to believe that the generations that follow will be wealthier still. It may be that changed patterns of saving and investment, new instruments such as long-term care insurance, higher birthrates, increased immigration of younger workers, and medical advances to prevent or treat these chronic illnesses will make some of our current worries overwrought. Just as it is foolish to ignore foreseeable problems, it is foolish to assume that we can foresee everything. Free societies are also creative societies, with a capacity to adapt to, as well as overcome, hard and novel circumstances.

But all that said, there is reason to think that a genuine caregiving crisis may be looming, not only for the least well off members of society but for those in the middle and upper classes as well. Three unprecedented trends are about to converge, potentially creating great stress on our systems of care. First, the age structure in America is shifting, such that both in absolute and percentage terms we are becoming a population of senior citizens. Second, although many of us stay healthier longer, and this is a great blessing, it is also the case that many of us will experience a lengthening twilight of disability and dwindling. Today, as never seen before, a vast majority of us will suffer a long period, as much as a decade, of chronic illness and dependency before death comes. And finally, just as these two trends create an increasing demand for good health care providers, the actual supply of available caregivers appears to be shrinking rapidly. Taken together these trends suggest an impending public policy or socio-economic crisis in providing long-term care for an expanding population of increasingly incapacitated seniors.vi

Confronting this grave social challenge will test us not only as citizens and policymakers, but as individuals and families. It will challenge us not only economically, but humanly and morally. It will test our character and self-understanding, requiring us to set aside self-interest in order to care for those who can no longer provide for themselves.

But if we are to confront well the challenges of long-term care, we need also to attend to the human and ethical significance of aging itself. To begin with, we should resist all notions of "solving" the "problem of aging" and avoid acting as if aging is simply a problem to be solved. Aging is part of human life, and aging well requires the search for wisdom about what it means to ripen and die. It requires the cultivation of the character necessary to endure one's own decline. It requires a richer understanding of the lifecycle-seeing oneself, as one ages, in relation to the young, and seeing death in relation to the renewal of human possibility from generation to generation.

To think about the aging society, therefore, we must also think about what it means to be an aging person: What shapes the individual experience of growing old, and how does this experience change from person to person, culture to culture, society to society? For only by having some idea of what it means to age well and to stay human in time do we have a compass to guide us as we face our own potential crisis, as well as some way to measure whether we have indeed averted the worst possible outcomes of aging badly.

II. Individual Aging and the Lifecycle

Aging is at once a biological, psychological, and social phenomenon. It is a universal feature of human life. We grow, we grow up, we grow older, and-if we are lucky-we grow old. In the broadest sense, we are aging from the moment of birth until the moment of death. In the beginning of life, to age means to develop-our bodies grow larger, our mental capacities expand, our physical powers develop. We learn to crawl, walk, run, speak, and write. In the long middle of life, aging means developing and declining all at once-developing new faculties and new perspectives but also gradually losing some abilities that once came easily. For many, growth amid decline is possible until the very end; the aging individual is still gaining in wisdom and experience even as the body enters its final senescence. But for others, at the end of life, biological aging eventually means almost entirely loss and decline; it means the gradual or swift eradication of one's physical and mental powers. In some cases, the body declines in advance of the mind; in other cases, the mind deteriorates in advance of the body. But in the end, for everyone, aging leads to death and, with it, the loss of the whole person as body-and-mind. This fact of being human and thus mortal is unavoidable for everyone.

Biological aging is not unique to human beings. All animals grow and die, and the capacity for growth seems intertwined with the reality of death. But for human beings, aging is not only a biological experience but a psychological, existential, social, and religious one: it involves seeing oneself in a new light as one's life progresses and one's body changes; it involves looking back on one's past experiences and looking ahead to one's shortening future; it involves treasuring life and independence as long as possible and accepting dependence and death when they can no longer be resisted. It involves changes of familial and social roles, changes of responsibility at work and at home, and differing forms of participation in civic and communal life.

Today, we have many images of being old-some perennial and some unique to our time. There is the revered matriarch who commands the respect of her entire family; the immobile and lonely resident of a nursing home; the old man who gives youngsters a run for their money on the tennis court; the doting grandmother who gives her grandchildren sweets when their parents aren't looking; the senior executive given "early retirement" by his younger and more ambitious colleagues; the elder statesman who advises those who now stand where she once stood; the demented elder statesman who no longer knows his own name. Old age comes with many faces, and our image of old age varies almost as much as the elderly persons we know most intimately. Sometimes we revere the old and sometimes we pity them. Sometimes we admire the timeless lessons they have to teach us and sometimes we belittle them for not adapting to the times.

The two most prominent images of aging today stand in deep opposition to one another: there is the idealized image of healthy old age, with vigor and vitality until the end, and there is the sorrowful image of extended decline and dependence, with the ravages of long-term dementia and physical deterioration. Ours is the age of both extended youth and extended degeneration-and often, for many individuals, a life trajectory that is marked by one after the other. We are younger longer and we are aged longer. Living well with this paradox of modern aging is perhaps the special challenge of our time.

Aging well is thus a deeply ethical activity. It does not simply mean having the good fortune of staying healthy and vigorous until the end, but requires exhibiting certain virtues for as long as one has the capacity to do so. As William F. May reflects in his seminal essay on the ethical life of the elderly:

Such virtues do not come automatically with growing old. Even limited dealings with the elderly disabuse us of that sentimentality. Rather, the virtues grow only through resolution, struggle, perhaps prayer, and perseverance. Further, these virtues hardly appear only in the elderly. Some common human virtues-which men and women of all ages might do well to cultivate-simply take special form in the later years. When they do appear in the elderly, however, they can instruct and sometimes even inspire. Their example can encourage particularly the fainthearted among the young who believe that full human existence is possible only under the accidental circumstances of their own temporary flourishing.29

May reminds us that the virtues required to age well are the universal virtues needed by human beings of every age; the old are not a separate species but human beings living human lives who should be held to human standards. These virtues do not develop and manifest themselves simply by living a long time; they require active cultivation throughout life, culminating but rarely beginning in old age.

Yet these virtues do take a special form among the elderly; old age is a particular time of life with particular ethical and existential demands, a time when vigor and ambition begin to wane and when the very meaning of one's existence presents itself with looming finality. May also reminds us that the old live (or should live) among the generations, not separate from them. He reminds us that the young often benefit from the moral example of the old, and that the old are more likely to age well when the rising generations stand with them-as caregivers, to be sure, but also as recipients of the gifts that the old alone are equipped to give. Even in their days of total dependence, the old can still be a gift to the young.

There is great human variation in how people age-variation dictated by the particularities of each person's circumstances and by the culture in which the aging person lives. But certain traits of character, as May suggests, are always necessary to age well: courage, including the capacity to keep one's fears in check even as one's prospects worsen; simplicity, including the capacity to "travel light" on one's final journey; wisdom, including the avoidance of excessive nostalgia and excessive remorse; and humor, including the wit that sometimes flourishes when the carefulness of middle age is no longer required.30 These virtues of the elderly-to which could be added gratitude and acceptance, among others-draw strength from a society that honors the old even when they can no longer produce at the high levels they once did, and these virtues give strength to a society where the old always seek to benefit those who must replace them in the cycle of generations. The need to face aging and death-our own and that of our loved ones-with clear minds, caring hearts, and human solidarity reminds us that virtue has not become obsolete in our high-tech world.

The personal experience of aging is, of course, more than a matter of virtue. The particularities of that experience are shaped by many factors-biological, psychological, and sociological-that we might review in turn.

A. Biological Nature and Environment

Gerontologists define "normal aging" as follows: "A time-dependent series of cumulative, progressive, intrinsic, and harmful changes that begin to manifest themselves at reproductive maturity and eventually end in death. Primary aging would describe those changes that occur over time independent of any specific disease or trauma to the body, whereas secondary aging would describe disabilities resulting from forces such as disease."31 While aging is a shared biological fact for human beings as a species, the trajectory of biological aging differs dramatically from person to person, due both to one's unique genetic inheritance and to variable environmental influences that shape each person differently throughout life. For some, nature tragically prevents even the possibility of old age, death arriving before the person can grow old or grow up; for others, genetic predilections toward longevity are inherited from long-lived ancestors. For those fortunate enough to live a long life, the process of aging and decline takes many different shapes: some live vigorously until the end, then die a swift or sudden death; some suffer a gradual period of bodily decline, with sufficient time and self-awareness to see aging as the final chapter of a complete life; some suffer dementia and live through long years of diminished awareness and total dependence.

This biological trajectory is influenced significantly in our time by the possibilities and limits of modern medicine. Medicine can prevent, reverse, or slow down some ailments; before other diseases and disabilities, medicine stands-at least for now-relatively helpless. Sudden and premature deaths are far less common than in the past; extended decline and disability are far more common. But the process of growing old always moves toward decline and death, even if the route is very different from person to person. The vital trajectory varies; the post-vital outcome does not.

B. The Presence or Absence of Loved Ones

In crucial respects, everyone ages alone: for it is the self's body alone that changes, the self's faculties alone that decline, and the self's death alone that looms; these personal realities cannot be shared fully by others. But at best, individuals do not age and die by themselves (even if they must age and die as themselves alone), but with family, friends, and caregivers who stand with them. The rhythm and happiness of old age are shaped greatly by the presence or absence of loved ones: by living with or outliving one's longtime spouse; by having one's adult children and grandchildren live nearby or far away; by living at home with family or in a nursing home; by having or not having family altogether. It is precisely because we must age and die alone that we need the presence of others to help us age purposefully; to remind us that life does not end with us but carries forward beyond us; and to show us that we are valued for what we have to offer and even when we can offer little in return.

Perhaps no friendship in life is deeper than that between husband and wife. As spouses think together about aging and dying, the meaning of being alone presents itself sharply: what loving spouse would not give his or her life to save a husband or a wife, and yet what spouse wants to leave his or her beloved to age and die alone. As with spouses, so it is with lifelong friends: It is a great blessing to live a long life, but also a burden to outlive all one's closest friends, and to face death without the camaraderie that they alone might offer. The weight of loneliness is also felt in the relation between an aging father or mother and his or her adult children and grandchildren: the noble desire not to disrupt the children's lives with one's own neediness co-exists with the desire to be needed by them even in one's days of dependence, and cherished by them when one's usefulness has passed. In the face of aging, our devotion to others is both most tested and most required. There is sometimes a powerful temptation to believe that elderly persons' lives are so limited that fellowship is insignificant, a temptation to regard being with them as little more than sitting awkwardly in a small room in a smelly nursing home. If, because they remind us of our own inevitable decline, we shun their company, we isolate them even more. But often, it is precisely because the elderly have nothing else that they need our fellowship most of all.

C. Wealth and Poverty

As the body ages, health problems proliferate and worsen. The capacity to face these problems-not only medically, but existentially-is affected significantly, often decisively, by one's economic condition. Money alone hardly ensures that wealthy individuals can age well; the absence of money alone hardly means that poor individuals will age poorly. Many wealthy persons suffer terribly in old age despite the best medicine that money can buy, and many lack the character to live well as their powers diminish. At the same time, many poor persons demonstrate heroic virtue despite the lack of economic means, and they still savor the gift of life despite its many hardships. But it is quite obvious that having reliable health care, good nursing, and the wherewithal to make life decisions free from severe economic pressures often makes it significantly easier to age well. Being wealthy ensures that one's bodily needs are attended to as well as possible, and it allows the elderly person (for as long as nature cooperates) to enjoy his or her final phase of life without living in a constant state of economic anxiety.

Of course, there will always be large disparities in the economic condition of the elderly; this fact is unavoidable in any free society (not to mention un-free societies, where the disparities between the wealthy and the poor are usually much starker). But as a society, we should aspire to provide every aging person some basic level of economic security and medical care-including long-term care-while always recognizing that providing support for the elderly is but one great civic good among many, and while always remembering that wealth alone is never a sufficient answer to the human dilemmas of aging.vii Economic security does not translate simply into existential security. Money does not give life meaning in the face of death. But as one faces great physical trials and ultimate human questions in one's final days, it is surely a great blessing to do so without the constant fear or present reality of economic disaster, or the constant worry that good care for oneself means years of hardship for one's spouse, children, or grandchildren.

D. Vocation and Avocation

Since old age is a distinguishable phase of human life, it makes sense to consider the distinct purposes and obligations that define it and the connection of these purposes and obligations to the other phases of one's life. The answer is hardly the same for everyone, and it obviously shifts from one period of old age to the next. For some, old age is a time for novel pursuits-a time to explore interests that have been put off year after year in order to meet the demands of full-time parenting and full-time work. For others, it is a time to return to old passions or to renew the existing bonds of family and friendship. For some, aging is a time to continue one's life work. For others-and eventually for everyone-aging means learning to "let go" of the things one has done throughout life; it means "retirement" in the true sense-no more fixing cars, taking hikes, sailing boats, or attending concerts. To age is to experience intermittent finitudes on the way to the ultimate finitude that is death. And for some, the central work of growing old is learning how to die-how to let go, how to say goodbye, how to ask forgiveness, and how to put one's existence and one's memory in the hands of others.

At best, the vocations and avocations of old age are not mere distractions to pass the time, or simple amusements that temporarily blur the realities of finitude. Amusement is not to be disparaged; it is as essential to old age as to other phases of life, and being amused is sometimes an achievement of character in circumstances where there are many reasons to be miserable. But constant amusement-cruises, bingo, television, and so on-may not be the best way to confront the seriousness of being old. Aging rightly forces reflection on the character of one's life as a whole. It often involves living with opposites: cultivating new interests, new sensibilities, or new understandings of the world, while letting go of old loves, old jobs, and old pursuits that once loomed large in one's identity. Pursuing the ideal of aging well is never work for the weak-spirited. It invites us to see our final years as the culmination of a human whole, with a deepening sense that one's life is not simply an arbitrary sequence of events but a coherent narrative with a beginning, a middle, and a meaningful end. Not everyone, alas, is so fortunate as to be able to do so.

E. Male or Female

While aging is a common human experience, it would be a mistake to ignore some differences between men and women during this time of life. As a sociological and demographic fact, women tend to outlive men, and thus more often face the burdens of living as widows than do men the burdens of living as widowers. This means that women are more likely than men to sleep in beds that now feel empty, having spent months or years caring for the person who once slept alongside them. This comparatively longer life also means that women are more likely than men to become impoverished in their golden years, spending down their final assets on long-term care, including the kind of care they may once have provided to their husbands free of charge.

There may also be certain inherent differences between men and women when it comes to aging, both biological and psychological. As William May suggests:

[W]omen receive an earlier and clearer biological preview of aging-if not of mortality; menopause gives them a clear signal that the wheel of existence turns downward toward the ground, while men find ways to obscure in themselves whatever signals they receive. Women tend more often than men to associate aging and death with the corruption of bodily form; men, with a flagging vitality. The corruption of the body shows up relentlessly in the morning mirror; the failure of vitality overtakes in more elusive ways and is suppressed more easily in men.32 viii

Other existential realities-such as the transition from work to retirement or from a full nest to an empty nest-once affected men and women in profoundly different ways. But as the familial and social roles of men and women have become less clearly demarcated, the differential effect of these experiences on men and women is perhaps less significant, even as the experiences themselves are no less profound. Yet despite the fluidity of male and female roles, it still remains the case that women serve much more extensively than men as caregivers for the dependent, including and especially for the dependent elderly. And it may be that this experience of caregiving makes women more attuned to the realities of aging, and thus more prepared existentially and ethically when they age and decline themselves.

F. Mind and Body

Although aging proceeds in one direction-toward the gradual breakdown of the whole body, ending in natural death-senescence is not a unified process that affects equally all systems of the body and mind. Different people age in different ways, in part because they lose different capacities at different times, and in part because they lose some capacities and not others before they die. Some individuals suffer long-term physical disability with their mental capacities and self-awareness firmly intact until the very end of their lives. For others, cognitive disability or dementia sets in and grows severe even as the body remains relatively healthy, with the total breakdown of the body's systems coming only much later, often years later. The experience of aging is thus shaped profoundly by the health of the body in relation to the health of the mind, and the health of the mind in relation to the health of the body. It is also shaped by the specific manner in which the body fails or the mind deteriorates-as well as by how well the individual is able to adapt to and compensate for any diminution of function.

The combination of physical debility and cognitive health can bring a host of personal frustrations: the powerful desire to do something for oneself or another, even the simplest thing, but not being able to do it; the inability to control one's bowels, with enough awareness to be embarrassed by it; the heartache of watching loved ones sacrifice so much on one's behalf, when all one wants is for them to flourish themselves. Yet the gift of self-awareness until the end is also great. The aging individual with a healthy mind and sick body can still savor some of life's greatest joys-experiential, interpersonal, and intellectual. He might still be able to read his favorite books, listen to his favorite music, see a grandchild off to the prom, and thank a devoted family caregiver. But the grave imbalance of physical and mental powers also often brings its own special misery-including the feeling of being trapped inside a body that does not respond to one's desires, needs, and efforts at control.

The gradual and extended loss of one's mental powers brings different dilemmas, frustrations, and miseries, both for the suffering person and for his or her caregivers. With a disease like Alzheimer's, as we will explore more fully below, some people suffer at first by knowing what is coming-by seeing one's mental powers decline, one's memory erode, one's grasp of one's surroundings becoming hazy. Eventually, this self-awareness of decline fades into the loss of self-awareness entirely-including the inability to understand how to behave appropriately, the incapacity to recognize loved ones, and the confusion that comes with not remembering life from one minute to the next or the paranoia that comes from not understanding what others are doing and why. Eventually, with Alzheimer's and other senile dementias, this cognitive disability becomes so severe that it leads to physical disability-the inability to speak, to control one's bowels, to eat and drink. Eventually, as the mind shuts down completely, so too does the body.

As we contemplate the imbalances of physical and mental health that often shape how we age, we confront the puzzling unity and disunity that is the human person. We come to see that we are an indivisible unity of the mind-and-body, but that often our will wants what our bodies cannot do and cannot be. The individual both has a body and is a body, even when he resents all the things the body cannot do or all the pain the body causes, experiences, and endures. And eventually, in death, this experience of imbalance leads to a unified ending: the death of the whole self, mind-and-body together.

G. A Person's View of Death

Our views on death obviously shape how we age, though these views often take firmer shape only as we age. Aging leads to death-the final limit on earthly life and a fact of our humanity that cannot be disputed or avoided. But there is deep disagreement about what the end of embodied life means for the human person who once lived. Many of us live with great uncertainty about the meaning of death. We live between faith and doubt, fear and serenity, obsession and blindness. Many others have firmer ideas about what death is-whether a supreme faith in redemption and resurrection after death, or a firm belief that life here-and-now provides no evidence for life hereafter, or a belief that an obsession with personal death only blurs the perfect nothingness (or nirvana) that is being itself.

Moreover, there is no simple formula for judging how one's views on death will shape one's approach to aging. Some of those who believe that the self disappears entirely after death will resist death at all costs, struggling to preserve bodily life against the prospect of total oblivion. Others with the same belief conclude that the self is the final judge of its own existence, including the arbiter of its own exit. In this view, the ravages of aging might be justifiably preempted by choosing or embracing death, on the grounds that happiness here-and-now is the only measure of life's worth and that some kinds of old age are too miserable or undignified to endure. For still others, a belief in the utter finality of personal death might lead to a kind of stoic virtue, enduring aging and death as an example of uprightness for those who will one day die themselves.

The widespread belief that life does not end here-that salvation, resurrection, or reincarnation is possible after death-can also influence how one views one's own aging. For some, this means that aging is both a burden that must be endured and a sacred passageway to divine salvation. Such an emphasis on the hereafter might make death seem less horrible because it is less final; or it might make death seem more frightening because one fears eternal judgment. To believe in heaven often means believing in hell; the comforts of faith often coexist with terrible anxiety about the fate of one's immortal soul.

In the modern age, as suggested above, many people live somewhere between certainty and doubt about the meaning of death: they hope for salvation, but cannot be sure; they see little reason to believe in life hereafter, but know that the origin and destiny of life is a mystery they cannot finally solve. But whatever one's views on these ultimate questions, death is both an evil and a necessity for all bodily beings: Death is an evil, because it can strike at any moment, because it robs us of those we love, and because the overwhelming fear of death can deform how we live. And death is a necessity, because as biological beings we are not made to live forever, and because much that is good in human life depends on accepting and living out our roles as self-conscious mortals. In death, one generation stands aside for the next. The ripeness of age gives way to the freshness of youth. In some ways, aging appears as a series of small dyings on the way to death, but also the drama of taking one's place in the ongoing chain of generations, ideally with more gratitude than bitterness for the life one has lived.

H. Conclusion: Modernity and the Lifecycle

This drama of growing old, passing down, and passing on is hardly new. It has always been at the heart of the human lifecycle, recognized by the wise men and women of every age (even before old age as we know it today became so commonplace). In De Senectute, Cicero gave voice to this human reality of ascent and decline: "The course of life is fixed, and nature admits of its being run but in one way, and only once; and to each part of our life there is something specially seasonable."33 The question we now face, however, is whether the idea of a "cycle of life," with its several and differently meaningful stages, still makes sense to us-both as a lived experience and as a guiding belief. Do we still regard each phase of life as possessing its own "seasonable" quality, where the trajectory of one's own life interlocks with the trajectory of the generations? Or do we live, in some sense, "after the lifecycle," with the expectation of extended youth or extended decline, and with a confused sense of how life's many phases fit together or how the self's demise relates to the ascent of those who will stand in our place?ix

Already, we seem to be extending youthful vitality into what once seemed like old age, and at the very least, we now expect healthy living and medical progress to keep us "feeling young" at ages that were once considered old. In the future, we may not see 70 or 80 as part of old age but rather as part of the long middle of life. At the same time, however, we may be entering an age in which extended decline and dependence also become widespread, and when a long period of being unable to care for oneself becomes the normal pathway to death. These changes in how we age are taking shape alongside myriad changes in the rhythm of the earlier phases of life-including when people marry, when they have children, how many children they have, and the kind of work they perform. The old increasingly care for the very old, and the young increasingly see the old at a distance-both geographically and pedagogically, shaped by a culture that often prizes mobility and novelty over stability and tradition.

To say that we live "after the lifecycle" is surely an exaggeration: the outlines of growth and decline still hold in our lives, as does the sense that life has a shape, with different phases, each with different qualities. But we also seem to be living in a new moment, both sociologically and psychologically: The age structure of society has changed and is changing; the decades of life are starting to hold new meaning; and the expectations we impose on old age are evolving both positively and negatively, with high hopes and great fears. These changes have been brought about in part by modern medicine's transformation of the trajectory of life, illness, and death and by modern culture's emphasis on independence, individual self-rule, and career as the major sources of self-esteem.

The rising prevalence of Alzheimer's disease and other dementias in old age only makes these questions about the trajectory of life more acute. Besides the normal fear of senescence and death, many people are horrified at the thought of ending their lives only after a long period not just of physical frailty and disability but also of mental incapacitation, impaired memory, diminished awareness, loss of modesty and self-control, distortion of personality and temperament, inability to recognize friends and loved ones, and general dullness and enfeeblement of inner life. It seems a cruel irony that the very medical advances that have kept many of us reasonably healthy into a ripe old age have, by the same token, exposed us to the ravages of incurable and progressive dementia, and to the prospect that our life's drama may well end with an extended final act marked by a gradual descent into mindlessness. In the next section we set the stage for a deeper discussion of this dilemma by giving an overview of the clinical and experiential facts about dementia and specifically Alzheimer's disease-an illness that terrifies many and requires years of constant care.

III. Dementia and the Human Person

Dementia is not a specific disease but a condition of disordered and diminished intellectual functioning, usually involving disorientation, impaired memory, confused thinking, disturbed speech, defective judgment, emotional instability and (later) apathy, and erosion of self-awareness. These deficiencies, most often progressive, can result from a wide variety of underlying diseases and disorders of the brain, having a wide variety of causes-traumatic, toxic, metabolic, vascular, degenerative. The dementias of old age are largely of two types, though with possible overlap: the dementia caused by vascular disease (so-called multi-infarct dementia, the result of multiple small strokes) and the dementia caused by Alzheimer's disease. Because its incidence is rising rapidly as our society ages, and because it generates the most personal anxiety and public disquiet, we shall concentrate on Alzheimer's disease. But many of the implications for caregiving apply equally well for persons suffering from the other dementias and, indeed, from other forms of frailty that afflict the elderly.

The assault on a person's mental faculties brought on by Alzheimer's disease is insidious in onset and slowly but implacably progressive in character. It usually runs a course from onset to death of about 6 to 10 years, though it may last up to twice as long. In its early phase, the symptoms are mild and only modestly impairing. But as it advances, slowly and with no particularly defined signposts of its progress, essentially all aspects of human mental capacity are first disordered and then destroyed, with the patient at the end bedfast, helpless, and mute. It is a distressing condition to witness and a frightening one in prospect.x

Alzheimer's disease is one of the most common mental disorders, making up some 20 percent of patients in psychiatric hospitals and a far higher percentage of patients in nursing homes and assisted living facilities. Because the diagnosis cannot be definitively established save by autopsy, it is difficult to get accurate numbers for incidence (rate of new cases per year) and prevalence (total number of cases at a given time) of the disease. Still, almost all estimates indicate that both incidence and prevalence are increasing, and rapidly, in parallel with the rapid growth in the numbers of people living into their seventies, eighties, and nineties. Although the personal risk of developing Alzheimer's disease in the United States has not changed since Alois Alzheimer first described the illness in 1907, clinicians are seeing more new cases each year because Americans are living long enough to develop the disease.

Estimates vary as to the number of individuals affected by Alzheimer's disease, but all studies concur that risk increases with age. Estimates of the prevalence of Alzheimer's disease in the United States for the year 2000 range from 2.17 to 4.78 million cases;34 35 4.5 million is the figure cited by the Alzheimer's Association.36 Among persons 85 and over (4.86 million in 200437), almost 40 percent (1.8 million) may be affected.38 Assuming no major breakthroughs in treatment that would delay incidence or retard disease progression, estimates of future prevalence (in 2050) are about fourfold the 2000 rate. And even with new treatment modalities that might slow the onset of the disease, none of the projections expects less than a three-fold rise in prevalence in 2050.39

A. The Phases of Alzheimer's Disease

The typical course of Alzheimer's disease can be roughly divided into three phases of increasing severity and disability. Patients begin with barely noticeable lapses in "recent memory" (the memory of immediate events). This memory deficit-first recognized perhaps only by a tendency to repeat comments or questions-increases over time to disorientation and confusion. This confusion may provoke occasional but very distressing emotional reactions of bewilderment and anger, dubbed "catastrophic reactions," that frighten both patient and family. Many mental capacities, however, are retained in this first phase, which usually lasts two to four years. The basic personalities of the individuals remain intact and they can enjoy many of life's experiences. Even as their friends and family look with fear for the future, they also notice how engaged the afflicted individuals can often be in daily events.

As the cognitive decline worsens, the disorder enters a second phase of another two or three years, marked by a progressive collapse of language functions (word finding, reading, and writing) and difficulties in manual skills (dressing, eating, and personal care). The patients now tend to wander, becoming lost even in familiar neighborhoods as their disorientation and confusion worsens. They often become preoccupied with suspicions aroused usually by mistakes of comprehension and attribution, but also by hallucinations and delusions. These suspicions lead to more severe emotional outbursts and, sometimes, physical aggression. A depression can emerge and become a crippling and persisting state of mind. And as the disruptions of affect, thought, language, and manual skills alter all their relationships with others, patients begin to fail at recognizing friends and family and seem to be fading out of contact with others.

In the third and final stage, the disorder takes the form of loss of control of bodily functions and motor powers. Walking becomes impossible, soon followed by generalized paralysis, confinement to bed, and incontinence of bladder and bowel function. Within a year or two, the patients sink into a state of relative mutism and unresponsiveness, neglecting all external stimuli or inner needs and their continuing existence depends entirely on nursing care. They eventually die from inanition or some intercurrent infection such as aspiration pneumonia.xi

This basic description of the clinical course emphasizes the growing losses of mental capacity that lead inexorably to the fading away of the self-a phenomenon distressing to witness and, for many patients early in their disease, distressing to experience. But the sense of "curse" now evoked by the very name, "Alzheimer's," overlooks the fact that patients-especially in the first phase-often have much to enjoy in life, even as much is lost. And these pleasures ("smelling the roses" is a useful shorthand)-perhaps becoming more momentary and transient over time-extend even into later stages, as patients wander in and out of relative lucidity. Many doctors and nurses find great reward in caring for these patients and their families. Clinical efforts to treat symptoms of depression and delusion, to offer friendly social and occupational therapy, and to simplify and regularize daily routines produce much comfort and reassuring support for patients while they are still able to appreciate many of life's simple pleasures. Yet the truth remains that Alzheimer's disease is a most distressing human affliction in which almost all that is vital to human character and dignity is gradually lost, but for which certain forms of care, discussed below, can bring great benefits to both patient and families.

B. Cause and Remedy

The symptoms of Alzheimer's are caused by a generalized disease of the brain, characterized by loss of neurons and resulting atrophy of the cerebral hemispheres, especially in the frontal, temporal, and parietal lobes. Extreme atrophy of the hippocampus is uniformly characteristic, accounting for the early and severe memory loss typical of all patients. Eventually, though, the atrophy becomes generalized; at time of death, the brain has shrunken by more than 20 percent of its original volume. On microscopic examination, three identifiable pathologic changes are characteristic: (1) "amyloid plaques," extra-cellular deposits of accumulated beta-amyloid, an amorphous, insoluble, protein substance, surrounded by bits of degenerated nerve fibers; (2) "neurofibrillary tangles," diffusely distributed, shrunken neurons that are filled with thickened tangled fibers; and (3) "granulovacuolar" degeneration, which affects other neurons, particularly within the hippocampus. These pathologic changes in the brain advance steadily and correlate with the progressing severity of the patient's dementia.

The underlying causes of Alzheimer's disease are complex, with both genetic and environmental factors playing a role. But recent biochemical studies on the plaques and neurofibrillary tangles have led to a reasonably detailed hypothesis regarding the sequence of pathogenetic steps that lead ultimately to neuronal death, atrophy, and clinical dementia.xii And this hypothesis is now directing intense scientific investigation in search of measures that could prevent, interrupt, or retard the pathological process that produces the plaques and tangles. For the first time, scientists are hopeful of finding interventions that could interfere with the pathogenic processes in ways that might make radical correction and even prevention possible.

At this time, therapeutic approaches are of three types: treatment of symptoms, replacement therapies, and experimental efforts aimed at interrupting the pathogenic process. Symptomatic treatments seek to help patients and families with the growing disability brought by the disease. They begin with aids to memory and orientation that regularly remind the patient of the present time and place and ultimately extend to protective services to help patients who wander or get lost, to nursing services for dilapidating self-care, and to the management (with medications) of some of the symptomatic depressions, hallucinations, seizures and the like that come with the progress of the condition.xiii

Replacement therapies seek to supply chemical deficiencies caused by the degeneration of neurons, for example, acetyl choline, a stimulating neurotransmitter whose reduced activity in the cerebral cortex correlates roughly with the degree of cognitive impairment in Alzheimer's patients. Medications that slow the breakdown of acetyl choline (by inhibiting acetyl-cholinesterase, the enzyme responsible for its turnover) and thus leave higher levels of this neurotransmitter in synapses have been demonstrated to slow the progress of the disease in some patients in the early first phase often by as much as a year or more.

Still unproven but extremely exciting are experimental trials aimed directly at the pathological process itself, and particularly at the presumptively toxic role of the accumulating beta-amyloid protein. These include measures that could decrease the production of the protein, block its agglutination, or protect the neurons from the toxic effects of its accumulation. Perhaps the most exciting experimental approach is the use of immunization to yield antibodies to beta-amyloid protein, so as to reduce its amount in the brain or to clear it after it has accumulated.xiv

All of these experimental approaches offer the promise of becoming disease-modifying treatments that could prevent the onset or greatly slow the progress of Alzheimer's disease. If it were possible by one of these means to postpone the onset of the disease beyond the normal lifespan or even for five to ten years, there would be a great reduction in the incidence of the disease and many of those who would get it later than they now do would die first of other causes. This might be especially true if subjects genetically vulnerable to Alzheimer's disease could be recognized before symptoms appear and could be treated with measures to forestall the pathogenetic "cascade." Optimism-long at a premium-is now growing in the research community, where the view is held that within the coming decades apt preventative and rational therapeutics will be found for Alzheimer's disease. Yet at least for the present elderly and the baby boomer generation, there is every reason to believe that Alzheimer's will remain a major public health problem that will persist for decades. Hope for a remedy is fitting; planning ahead based on its rapid arrival is not.

C. Alzheimer's Disease and Human Experience

Humanly speaking, Alzheimer's disease is not just a medical condition, with a biological cause and sociological implications. It is also a lived experience, for the ones who suffer it, for their family and friends, and even for thousands of people who live in fear of getting it. Not long ago, when dementia was less common and its causes were unknown, a case of senile dementia was regarded by family members as part of natural old age ("Dear grandpa has grown old and forgetful") and of no direct concern to their own future. Today, everyone is aware of this now-common disease that sometimes runs in families, lacks effective treatment, and carries a dreaded name; as a consequence, a case of Alzheimer's in the family is often experienced as a terrifying or stigmatizing curse. People feel themselves at risk of following the dreadful path they witnessed in parents or grandparents, and many of them notice fearfully every clumsy mental process they display after age 50, thinking it a harbinger of their fate. The differentiation of Alzheimer's disease by name has successfully launched effective and focused research enterprises, but it has done so at the price of human disquiet and even terror, often inducing depression in the "worried well," and sometimes even leading them to suicide.

The actual human experience of the disease itself varies greatly, depending in part on the person's character and temperament, in part on the progress of the disease. Many patients develop symptoms so imperceptibly and gradually that, by the time someone brings them for evaluation and the diagnosis is made, they are already sufficiently impaired that they worry little about their future. They are bothered rather by their present handicaps and especially by the restrictions imposed on them, such as loss of independence or revoking of driving privileges. But many people who come to doctors seeking an explanation of their new mental impairments are already worried about the import of their symptoms and are quite able to appreciate the prognostically grim diagnosis. Individuals typically respond according to their habitual ways of confronting bad situations. Those with broad horizons and calm demeanors might look similarly at this problem and seek to reassure their loved ones and themselves that they are equipped to manage what comes. Those fortunate enough to have a trusted physician who promises to stay with them all the way through the illness might gain some comfort and reassurance. Such support is, alas, unavailable to very many people, who lack either a caring family or a trusted physician, or both.

But for many, the uncertainty of their future is the most distressing feature. Those who have habitually fought uncertainty by seeking always to be in control will likely attempt a similar mastering stance against this situation. But as they confront their loss of control and their impotence to correct it, they can become the most distressed of patients. They are particularly susceptible to the urgings of those who advocate euthanasia and assisted suicide. Many do in fact become despondent and dangerous to themselves, and some contemplate suicide and occasionally succeed in the effort. Men are more likely than women to take desperate action. Women are more likely to become apathetically depressed. A kind, thoughtful, and experienced physician can often bring a more detached sort of support to this kind of patient than worried family members can. Indeed, many of these desperate patients respond well to anti-depressant medications and throw off their depression and their suicidal thoughts; with the anti-depressant treatment their cognition can for a time improve considerably.xv

With the advance of the disease, the patients' long-term worries about prognosis are replaced by distress associated with their confusion and occasional suspicions. They have trouble making themselves understood; they cannot communicate what is bothering them. Here, as mentioned, considerable comfort is brought when their daily schedule or rounds of activity are routinized to minimize surprises, and they are frequently reminded of the daily plan. Medications can help calm patients, but if not used sparingly they can also undermine efforts to engage patients in occupational therapy, daily exercise, or other stimulating activities. With new nursing practices that emphasize cheerful and responsive environments, patients often do better in skilled nursing facilities than they do at home, and certainly better than they once did under the restrain-and-restrict-them approach of the old nursing homes. Ultimately, with the loss of all mental functions, however, patients fall further away from human interaction, becoming quite apathetic and absolutely dependent on nursing care. Yet even in their largely apathetic state, they can often recognize and appreciate the kindness shown to them and the affection represented in the visits and responses of family.

While the fear of Alzheimer's disease afflicts mainly the worried well and some of those in the early stages of the disease, the psychic distress caused by the disease often falls more heavily on loving family members than on the patients themselves, especially as the disease progresses. Paradoxically but mercifully, a patient's subjective suffering frequently diminishes as his mental diminishment worsens. The reverse is generally the case with the family. As the patient fades from meaningful contact, the family's sorrow over what is being lost increases; such distress is often held at bay only because time and effort needed for the increased demands of care do not allow for such reflective "indulgences."

Alzheimer's disease is not the worst human affliction, nor is it the only condition that oppresses the frail and feeble elderly. But its special character-attacking not only the capacities that are central to a flourishing human life but also the existence of a self-knowing consciousness-creates its own special difficulties, first for the patients, eventually for the onlookers. True, in the early stages of the disease, reflective patients will suffer from looking ahead to a future that is at once utterly uncertain and utterly determined, a future before which those who like to be in control will feel enormously discomfited. They will feel the frustrations of failing to find the right words, of misremembering, of getting lost. But the more the disease progresses, the more the sadness resides with the family. The depression, the outbursts, the loss of self-command, the disappearance of civilizing inhibitions, the incontinence, and the inability to recognize or interact with loved ones tear at the heart of spouses, children, and friends. It is not easy to love in the same way a person who both is and is not really there.

Even those who believe in the redemptive power of suffering have a hard time saying anything good about a condition that renders the sufferer impervious to gaining any insight or improvement from his troubles and burdens. And at the end, there is no possibility for farewells, for reconciliations, for anything more than the harsh reality of death modified by a relief that the ordeal is finally over. Despite these hardships, many loving families continue to care for those who have been given to them to love-loyally, steadfastly, often heroically and without much outside support-continuing to benefit as best they can the life that the person they love still has. It is no wonder that this activity takes its toll, both mental and physical, on the family caregivers, many of whom are often quite elderly and infirm themselves and many of whom become depressed or sick in other ways during what can be up to a decade of giving care.

Generalizations, of course, are always risky. As with the patients, so different families will cope differently with their calling to care, depending on temperaments and character, previous patterns of family closeness and mutual assistance, and available economic resources and social support. Families that have ever felt close and supportive will be ready to do their utmost to care. Not only devoted spouses, but also adult children of an affected parent often take on the task of long-term care. Here the sense of loss can be partially offset by a sense of satisfaction derived from the giving of needed care, as well as from honoring the commitment to maintain the dignity and modesty of the patient as much as possible through the illness and its depredations.

Occasionally, however, this sense of commitment can develop into a guilt-ridden urge to do and give more than is reasonable or to protect the patient against all change. Guilt and stress afflict even the most devoted, strong, and resourceful families, who today frequently find themselves in a bind, especially when adult women try to care for their enfeebled parents or in-laws while holding down jobs and caring for their own small children. The decision to move Mom from her home into an assisted living facility, or Dad from the spare room in our house to the nursing home is, for such families, a wrenching decision, and the sense of betrayal that devoted spouses and offspring feel on such occasions is often much to their credit. But when home caregiving threatens the basic well-being of the rest of the family, institutional care often becomes the wisest choice under bad circumstances. Attentive physicians and social service providers can help the family weather all stages of the decline by advice, encouragement, medical interventions, and the recruitment of support services for the patient and respite-care for the caregivers.

Finally, there are the decisions that must be made, ranging from simple matters such as the use of ancillary medications to weighty choices such as the use of "heroic measures" or life-sustaining remedies. Choices that were simple and obvious early in the course become more problematic as the disease worsens, and ultimately heart-wrenching in their implications in the terminal phase. Close contacts between a devoted physician, other professional caregivers, and the caregiving family can help family members make their decisions conscientiously and thoughtfully, with due regard for the life reaching the end of this grim illness. But no one should pretend that this is anything but anguishing for almost everyone involved.

IV. Aging and the Common Good

Looking broadly, we seem to be on the cusp of an historically unprecedented situation, both in the degree of care that elderly individuals will need and in the proportion of society's resources that will have to be devoted to such care. Medicine's success in combating many acute illnesses has enabled us to live long enough to suffer from various age-related chronic illnesses. For many, longer, healthier life is enjoyed at the price of longer, later periods of enfeeblement and disability. At the same time, our preoccupation with individual self-fulfillment has weakened many intergenerational attachments, and the privileged place of gainful employment and career advancement in our notions of self-worth has diminished the time available for and the value we place on caregiving.

It was one thing to say that families should be responsible for care of their aged relatives in an historical period when life expectancy was 60 or 70 years of age and the period of dependency was limited. But it is quite another when a period of dementia could stretch out ten years, the last five of which require nonstop nursing care. Moreover, the old social system that took care of aged family members was dependent largely on the uncompensated labor of women; there are extremely few families today that could provide this level of support (by modern standards) without help from other social institutions or social programs. And, as we have seen, many families are struggling, especially women, who continue to bear the greatest burden of care for the elderly, while also in many cases providing for growing children and working outside the home in order to help make ends meet.

We cannot pretend that either families or society as a whole will have unlimited resources, particularly as the age structure of our population continues to change, with more elderly persons and fewer young workers. We will have to make hard choices between competing goods, both as families and as a nation. For example: Should Medicare continue to cover every expensive new medical technology, and if not, on what basis should the public set limits? Should families accept inferior professional care for treasured elders to ensure adequate resources to buy a home or send children to college? Should we mandate that individuals with an annual income above a certain threshold purchase long-term care insurance in order to socialize the risk of dependence? These are not questions that we can address in substantive detail in this inquiry. But they are the kinds of questions that we must keep in mind as we think about the ethics of caregiving for those elders who need it, including the ethical dilemmas of deciding when to continue and when to forgo medical treatment for persons with dementia (the main subject of the analysis that follows). As we think about the meaning of aging and the moral dilemmas that arise at the bedside, we cannot ignore the practical realities that arise for society as a whole or the need to articulate and pursue some shared vision of the common good.

Of course, it is always best to state one's aspirations in the positive, in terms of what we hope to achieve-such as a society where aging has meaning, where death seems like the fitting conclusion to a life well-lived, and where we help one another from generation to generation. But there is also a wisdom in seeing clearly what we hope to avoid, especially in situations where perfection is impossible and where some hardship is inevitable. And here three points seem worth stressing in relation to aging and the common good.

First, we must avoid two errors or extremes: On the one hand, we must erect firm and permanent safeguards against certain inhuman "solutions" to the challenges of caring for the dependent elderly-such as active euthanasia or the promotion of assisted suicide, solutions that define a category of persons as "life unworthy of life" or as persons deserving of abandonment and beyond the scope of our care. On the other hand, we must avoid allowing long-term care for the elderly and medical care in general to crowd out every other civic good-such as educating the young, promoting human excellence in the arts and beyond, and providing for our common defense. We must never betray our elders, but we must also recognize that we cannot (and should not) always do everything conceivable on their behalf.

Second, we must avoid two crises of caregiving: The first is the danger that some old people will be abandoned or impoverished, with no one to care for them, no advocate to stand with them, and inadequate resources to provide for themselves. The second danger is the complete transformation of caregiving into labor, creating a situation where people's basic physical needs are efficiently provided for by "workers," but their deeper human and spiritual needs are largely ignored, because those with the closest ties are unable or unwilling to be with them.

Finally, we must avoid (or to some degree reverse) the full-scale medicalization of old age, both in our outlook and in our institutions. We increasingly see old age as both a bundle of needs and problems demanding solution and as a time of life whose meaning is largely given in terms of being and staying healthy and fit. This outlook has created discontent with the lifecycle itself, produced an insatiable desire for more and more medical miracles, created the illusion that we can transcend our limitations and that death itself may be pushed back indefinitely. More deeply, this outlook has engendered, at least in some individuals, the illusion that independence is in fact the whole truth about our lives, without giving full regard to those attachments and obligations that bind and complete us. We do not beget or rear ourselves, and neither do our children. At every stage of life, we belong together, in sickness as in health. Forgetfulness of these truths quickly converts independence into loneliness, especially for the old.

In the end, there is no "solution" to the problem of aging, at least no solution that a civilized society could ever tolerate. Rather, our task is to do the best we can with the world as it is, improving what we can but especially avoiding as much as possible the greatest evils and miseries of living with old age: namely, the temptation of betrayal, the illusion of perpetual youth, the despair of frailty, and the loneliness of aging and dying alone. In the chapters that follow we will attempt to begin this task, first, by outlining shortcomings in the current approach and then by sketching an ethics of best care for the patient now here.

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Endnotes

1. Manton, K. G. and Gu, X. L., "Changes in the Prevalence of Chronic Disability in the United States Black and Nonblack Population Above Age 65 from 1982 to 1999," Proceedings of the National Academy of Sciences of the United States of America 98: 6354-6359, 2001.

2. Health, United States, 2004, Center for Disease Control/National Center for Health Statistics, table 27.

3. Hogan, C., et al., A Statistical Profile of Decedents in the Medicare Program, Washington, DC: Medicare Payment Advisory Commission, 2000. Available online at http://www.cdc.gov/nchs/hus.html.

4. "Getting Older, Staying Healthier: The Demographics of Health Care," Testimony of James Lubitz, Acting Chief, Aging and Chronic Diseases, Statistics Branch, National Center for Health Statistics, Centers for Disease Control and Prevention, before the Joint Economic Committee, U.S. Senate, July 22, 2004. Available online at http://jec.senate.gov/_files/Lubitztestimony.pdf.

5. Older Americans 2004: Key Indicators of Well-Being, Federal Interagency Forum on Aging-Related Statistics. Available online at http://www.agingstats.gov.

6. U. S. Census Bureau, 2005, Estimates of the Resident Population by Selected Age Groups for the United States and States and for Puerto Rico: July 1, 2004. Available online at http://www.census.gov/popest/states/asrh/SC-est2004-01.html.

7. U.S. Census Bureau, 2004, U.S. Interim Projections by Age, Sex, Race, and Hispanic Origin, Table 2a, "Projected Population of the United States, by Age and Sex: 2000 to 2050." Available online at http://www.census.gov/ipc/www/usinterimproj.

8. U.S. Bureau of the Census, Census Population Reports, P25-1130 (Middle Series of Projections), as quoted in Enid Kassner and Robert W. Bectel, Midlife and Older Americans with Disabilities: Who Gets Help? A Chartbook, AARP Public Policy Institute, 1998, p. 7.

9. Alzheimer's Association, "Statistics about Alzheimer's Disease,"http://www. alz.org/AboutAD/statistics.asp (accessed August 24, 2005).

10. U.S. Census Bureau, 2005, State Interim Population Projections by Age and Sex: 2004-2030, Table 3, "Ranking of States by Projected Percent of Population Age 65 and Over: 2000, 2010, and 2030." Available online at http://www.census.gov/population/www/projections/projectionsagesex.html.

11. Steuerle, C. E., and Van de Water, P., "Long-Run Budget Projections and Their Implications for Funding Elderly Entitlements," in Altman, S., and Shactman, D., eds., Policies for an Aging Society, Baltimore, MD: Johns Hopkins University Press, 2002, p. 82.

12. "Chronic Conditions: Making the Case for Ongoing Care," September 2004 update, Johns Hopkins University Partnership for Solutions, http://www.rwjf.org/files/research/ChronicConditionsChartbook 9-2004.ppt (accessed August 24, 2005).

13. Binstock, R., Case Western Reserve University, presentation to the President's Council on Bioethics, Washington, D.C., June 24, 2004, available online at http://www.bioethics.gov.

14. Lynn, J., Sick to Death And Not Going to Take It Anymore! Berkeley, CA: University of California Press, 2004, p. 13.

15. Ibid., p. 21.

16. Lynn, J. and Adamson, D. M., "Living Well at the End of Life: Adapting Health Care to Chronic Illness in Old Age," Rand Corporation White Paper, 2003, p. 5.

17. Ibid., p. 9.

18. National Family Caregivers Association. 2000 "How Many Caregivers Are in the U.S.?" Available online at http://www.thefamilycaregiver.org/who/ comp_survey.cfm (accessed August 24, 2005).

19. Administration On Aging. 2003. "Family Caregiving." Available online at http://www.aoa.gov (accessed August 24, 2005).

20. Lynn, Sick to Death, p. 15, citing Kassner and Bectel, Midlife and Older Americans with Disabilities. (For the latter, see endnote 8.)

21. National Family Caregivers Association, "Caregiving Statistics," http://www.thefamilycaregiver.org/who/stats.cfm (accessed August 24, 2005).

22. Schulz, R., and Beach, S. R., "Caregiving as a Risk Factor for Mortality: The Caregiver Health Effects Study," Journal of the American Medical Association 282: 2215-2219 (1999); Kiecolt-Glaser, J. K., et al., "Chronic Stress Alters the Immune Response to Influenza Virus Vaccine in Older Adults," Proceedings of the National Academy of Sciences of the United States of America 93: 3043-3047 (1996).

23. National Aging Information Center, Aging In The Twenty-first Century, U.S. Administration on Aging. Washington, DC: Government Printing Office, 1996.

24. Institute for Health and Aging, University of California, San Francisco, Chronic Care in America: A Twenty-First Century Challenge. Princeton, NJ: Robert Wood Johnson Foundation, 1996.

25. Hooyman, N. R. and Kiyak, H. A., Social Gerontology, Boston, MA: Allyn and Bacon, 1996.

26. Feldman, P. H., "Labor Market Issues in Home Care" in Fox, D. M. and Raphael, C. eds., Home-Based Care for a New Century, Malden, MA: Blackwell Publishers, 1997.

27. National Council of State Boards of Nursing (2002) National Council Licensure Examination-Registered Nurse/Practical Nurse (NCLEX-RN and NCLEX-PN) examination statistics. Statistics from years 1995-2002.

28. American Hospital Association. June 2001. "TrendWatch." Available online at http://www.hospitalconnect.com/ahapolicyforum/trendwatch/twjune2001.html (accessed August 22, 2005).

29. May, W. F., "The Virtues and Vices of the Elderly" in Cole, T.R. and Gadow, S., eds, What Does It Mean To Grow Old?: Reflections from the Humanities, Durham, N.C.: Duke University Press, 1950, p. 50.

30. Ibid., pp. 51-61.

31. Moody, H. R., Aging: Concepts and Controversies, Thousand Oaks, CA: Pine Forge Press, 2002, p. 4.

32. May, "The Virtues and Vices of the Elderly," pp. 56-57.

33. Cicero, De Senectute [On Old Age], Harvard Classics, Paragraph 8. http://www.bartleby.com/9/2/1.html (accessed August 24, 2005).

34. Grant, W. B. "Year 2000 Prevalence of Alzheimer Disease in the United States" Archives of Neurology, 61: 802-803, 2004; author reply 803.

35. Hebert, L. E., et al., "Alzheimer Disease in the US Population: Prevalence Estimates Using the 2000 Census" Archives of Neurology 60: 1119-1122, 2003.

36. Alzheimer's Association website.

37. US Census Bureau, July 1, 2004 estimates.

38. See Hebert et al., 2003, op. cit.

39. Sloane, P. D., et al., "The Public Health Impact of Alzheimer's Disease, 2000-2050: Potential Implication of Treatment Advances," Annual Reviews of Public Health 23: 213-231, 2002.

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Footnotes

i. It is, of course, a leading goal of current medical research to identify risk factors for our remaining chronic illnesses and to reduce the disability that afflicts the "old-old," with the ultimate objective of producing a pattern of life that is healthy almost to the end.

ii. It bears emphasizing that much could happen to alter these trends. For example, increasing obesity and its consequences, widespread industrial pollution, or greater vulnerability to global epidemics (avian flu or antibiotic-resistant bacteria) might markedly alter all the predictions, giving rise to a different set of medical and social challenges than those anticipated in this report. Still, it makes great sense to take our bearings from what we know and what seems likely to occur if present trends continue.

iii. The study also points out how the different trajectories toward death require different strategies and instruments of care: hospice for the first; ongoing disease management, advance-care planning, and mobilizing service to the home for the second; Meals on Wheels and home health aides, then institutional long-term care facilities for the third. According to the study, the remaining 20 percent of all deaths "are split between those who die suddenly and others we have not yet learned how to classify."

iv. Based on the RAND finding that 40 percent of people will die only after a prolonged period of frailty and dwindling, elementary statistics suggest that a married couple with four living parents should have the following rough expectations: an 87 percent chance that one or more of their parents will die in this way; a 52 percent chance that two or more will; an 18 percent chance that three or more will, and a 2.5 percent chance that all four parents will.

v. In this section and the next we rely heavily on the work of Dr. Joanne Lynn, a practicing physician long active in hospice care, long-term care, and end of life issues, whose recent book, Sick to Death and Not Going to Take it Anymore! (University of California Press, 2004) offers a succinct summary and portrait of caregiving today and an analysis of what may be a looming caregiving crisis. Much of the following account of the present and future realities of caregiving is based on the first chapter of her book.

vi. Making matters worse is a concurrent ethical crisis: we are unclear about the moral significance of our new situation and especially about what is owed, humanly speaking, to those unable to care for themselves. We treat this subject in Chapters 2, 3, and 4.

vii. Of course, to the extent that this economic security is provided through public funds, it will come at the expense of other public goods and other segments of society, for example, politically powerless needy young children.

viii. How much of any such differences between men and women is natural and how much is cultural is, of course, a long and (for now, at least) unanswerable question.

ix. Prof. Thomas Cole presented an extremely illuminating discussion of these questions at the June 24, 2004 meeting of the Council. For the transcript, see http://www.bioethics.gov.

x. Very few other dementia illnesses are exactly like Alzheimer's disease. There is as yet no "biologic marker" identifiable during life, and only evidence from brain tissue can confirm a clinical diagnosis. However, in the 1980s a working group from the National Institutes of Health developed clinical criteria with which the diagnosis can be made with 85 to 90 percent accuracy (McKhann, G., et al., "Clinical Diagnosis of Alzheimer's Disease," Neurology 34(7): 939-944, 1984 and Tierney, M. C., et al., "The NINCDS-ADRDA Work Group Criteria for the Clincial Diagnosis of Probable Alzheimer's Disease," Neurology 38(3): 359-364, 1988). This achievement has been invaluable for epidemiologic studies (documenting the prevalence of Alzheimer's disease in the population) and for research purposes (identifying with confidence patients with Alzheimer's disease for closer analysis and clinical research).

xi. Several clinical features help differentiate the Alzheimer's course from other forms of dementia and cognitive disablement. First, there are no abrupt neurological events such as occur with cerebrovascular strokes that can produce multi-infarct dementia. Alzheimer's disease advances slowly and smoothly, problems with memory and other psychological capacities dominate much of its course, and motor and sensory symptoms such as paralysis do not appear until the terminal phase. Second, the psychological impairments are global rather than specific to memory or language alone. Detailed psychological testing will often show this global feature even in the early stage when only the memory seems disturbed. Third, consciousness in the sense of awareness and wakefulness is also unaffected for most of the course. Indeed, many observers of a patient note how he or she retains much of their usual personality and interpersonal "style" even as the analytic reasoning power is lost. This feature is quite different from the states of mind associated with the intoxications from kidney or liver failure.

xii. Here is the hypothesis and its biochemical foundation. The plaques consist largely of beta-amyloid protein (containing 40 or 42 amino acids), produced by the normal turnover of a structural transmembrane protein in brain cells (APP, for "beta-amyloid precursor protein") that may have receptor functions. The neurofibrillary tangles are masses of helically wound filaments, which are tangled and thickened because they represent the aggregation of an insoluble pathologic form of a normally highly soluble, cytoskeletal protein called "tau." The "cascade" hypothesis for the pathogenesis of Alzheimer's disease draws these biochemical observations into a powerful explanatory idea. This hypothesis holds that the very gradual extra-cellular accumulation (either through over-production or slower clearance) of the beta-amyloid protein-particularly the 42-amino acid form-is in theory toxic to cerebral neurons and their synaptic connections. Accordingly, the beta-amyloid protein could generate (by several mechanisms still under study) a response in the neurons that leads (among other things) to the intra-cellular (intra-neuronal) appearance of the pathologic form of "tau" and gradual development of the destructive neurofibrillary tangles that disrupt neuronal functioning and lead to neuronal death. (See Dr. Dennis Selkoe's presentation to the Council, June 24, 2004, available online at http://www.bioethics.gov. See also Selkoe, D. J., "Alzheimer Disease: Mechanistic Understanding Predicts Novel Therapies," Annals of Internal Medicine, 140(8): 627-638, 2004.)

xiii. Five particular psychic deficits call for symptomatic attention. Amnesia, particularly difficulty retaining immediate happenings, requires repetition and mnemonic aids. Aphasia or dysphasia, with breakdown in word choice, requires patience and acceptance of circumlocutions. Apraxia, particularly in managing simple manual tasks such as dressing and toileting, requires close management and assistance. Visual and spatial disorientation, including getting lost in familiar places, requires regular support and guidance. And affective disruptions, including episodic outbursts of anger and fright produced by the sense of loss of control or change of routine, are avoided more than treated by maintaining a daily routine and by the reassuring presence of regular caregivers. In addition, depression in the form of demoralized anxiety over the implications of learning the diagnosis afflicts many patients in the earliest phase; here, the reassurance of a committed physician promising continuing care and assistance for the duration of the disease is invaluable and essential. This "demoralization" must be differentiated from a depressive disorder resting on the brain pathology itself, quite frequent in Alzheimer's patients, which typically responds to anti-depressant medications.

xiv. Such "vaccination" against beta-amyloid protein led to an antibody response and the clearing of the beta-amyloid in mutant mice that otherwise accumulated beta-amyloid in their brains. But the early trials in humans ran into difficulties. "Active" immunization of the antigen-antibody variety produced complications of an allergic kind in some patients, so investigators have turned to "passive" immunization by delivering exogenous anti-beta-amyloid antibodies to patients with the disease. This "passive" immunization effort is now undergoing clinical trial in human patients and the results are eagerly awaited.

xv. A crucial matter of differential diagnosis with middle-aged and elderly patients is that severe depressive illness can slow cognition severely all by itself. All neuropsychiatrists have seen patients believed to have Alzheimer's disease turn out to be afflicted by a recurrence of a depressive illness that, in attacks, had been seen earlier in their life but that on this occasion was misidentified (and thus long untreated) as Alzheimer's. Suicide in these depressed and misdiagnosed patients is also not rare.

 


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