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](https://webarchive.library.unt.edu/eot2008/20090114031326im_/http://www.bioethics.gov/images/projected_pop.gif)
(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
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.
_________________
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.
_________________
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.