Ten

OLD, ILL, AND ESTRANGED: ON THE

NEEDS OF PERSONS RECEIVING
ELDERLY CARE
Bengt Rieht
For many years, much of the work in the field of elderly care has dealt with
meeting the needs of the elderly. In Sweden, Abraham Maslow's halfcentury-old model of needs (Maslow, 1954) has come to frmction largely as a
guide for action in this area of care (Falk, Gustavsson, and Rieht, 2001). The
advantage of such a framework is that it expands the focus of care from a
narrow concentration on the biological organism to the individual in his/her
totality. The disadvantage is that the model is too general to. provide guidance
in an individual case. In practice, Maslow's model has therefore either come
to lend itself to different ideological ends regarding care or degenerated into
the idea that the duty to provide the elderly with personal service belongs to
health-care staff.
This responsibility has often been synonymous with carrying out different practical chores, such as cleaning and keeping things tidy, doing bank
errands, or helping the elderly make purchases. It is obviousor it should
bethat the old person is offered help with personal tasks that he or she
carmot do independently. This kind of personal service, however, covers only
a part ofthe person's total needs. The current focus of elderly care is not only
disadvantageous for those receiving care, it also puts the staff in a position
that is dangerously close to the humiliating role of a maid, and risks affecting
the prestige and attractiveness of their work.
The large majority of those receiving formal elderly care are also ill.
illness shifts and changes the needs that characterize the totally healthy state.
One reason Maslow's model of needsas well as other influential and general theories, such as Erik Homburger Erikson's theory of development
(Erikson, 1982)are inadequate with respect to providing guidance in practical care is that they do not take into consideration what it means to be ill.
Thanks to developments in recent years in health philosophy and medical
sociology, however, we know enough today about the phenomenology and
social psychology of ilhiess to be able to fill the otherwise rather empty
framework of needs with something more concrete. In this article I will re-

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view some of the most widespread conceptual frameworks in the field, after
which I will draw some implications for work in elderly care. Because my
background is mainly in medical sociology, I have found it natural to refer
fn:st to this area. Still, rational considerations also exist behind my choice:
(1) Generic concepts have developed, primarily within medical sociology,
regarding the understanding of illness. The philosophicalphenomenological treatment of the subject has often had the character of
applied phenomenology.
(2) Purely phenomenological. analyses have often focused on separating the
phenomenological perspective from a biomdical perspective, a little to
the detiiment of the true analysis of ilhiess. Medical sociology has
largely outgrown this controversy with medicine.
(3) Medical sociological conceptualizations are often based on phenomenological, interactionist, and sometimes narrative grounds, and thereby include some philosophical insights. The reverse is seldom the case.
(4) Medical sociological conceptualizations (even if they are often less lucid) are focused more on variations and processes than their philosophical counterparts. Therefore, philosophy has something to. leam from sociology and something to convey to sociological concept- and theorydevelopment (for a positive model, see Nordenfelt, 1995a).
(5) In its more complet separation from traditional medicine, medical sociology has unnecessarily neglected to draw the practical implications of
its insights. The need for explication is therefore greatest in this area.
Before tuming to the main objective, I will describe the thinking that has
characterized elderly care since the 1960s to justify ftirther the need for an
amplification of the currently dominant frameworks of thought.
1. Perceptions About Good Aging
One theoryor rather, ideologythat has long permeated care is the socalled activity theory. The theory is based on the premise that the individual's qualit>' of life is positively correlated with his/her degree of activity.
"The greater the physical and social activity, the greater the life satisfaction"
is the motto for care based on the reasoning of the activity theory. Younger
or middle-aged healthy, occupationally active individuals naturally perceive
of the activity theory as intuitively reasonable. Who wants to live a passive
life in withdrawal and social isolation? In addition, this perception is underlined by the fmding that a rich social and physical life has a positive impact
on a person's state of health.
But other ways of looking at aging have challenged the activity theory.
During the 1960s, the disengagement theory (see Cumming and Henry,
1961) had an upswing. According to this theory, inactivity in old age is nor-

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mal and associated with a high level of life satisfaction. The theory is based
on three hypotheses. The first hypothesis is that in one way or another, society pushes old people to the sidelines. The second hypothesis is that the individual screens himself or herself from society. This disengagement has social
and mental dimensions. Social disengagement refers to decreased interaction
between the elderly person and his or her previous social network, while
mental disengagement refers to the elderly person's decreased interest in
people and events in his or her surroundings. The third hypothesis is that
despite a decreased number of roles, the individual can experience a high
degree of life satisfaction.
The gerotianscendence theory (see Tomstam, 1997) offers still another
way of looking at aging. According to this theory, aging does not necessarily
have to be a continuation of an earlier lifestyle, but can instead involve development toward something new and different. The theory is based on the
idea that the aging individual often exchanges his/her earlier, rational, activity-focused atiitude for other values and another way of being. Activity in its
traditional sense would not be the imiversal path to good aging. An early
forerunner of the theory of gerotianscendence is the psychologist CarlGustav Jung, who in the essay The Stages of Life expressed the following
about the problems of aging:
A human being would not grow to be seventy or eighty years old if this
longevity had no meaning for the species to which he belongs. The aftemoon of human life must also have a significance of its own and cannot be just a pitiil appendage to life's moming. The significance of the
moming undoubtedly lies in the development of the individual, our entrenchment in the outer world, the propagation of our kind and the care
of our children. This is the obvious purpose of nature. But when this
purpose has been attainedand even more than atiainedshall the
earning of money, the extension of conquests and the expansion of life
go steadily on beyond the bounds of all reason and sense? ... Where is
the wisdom of our old peoplewhere are their precious secrets and visions? For the most part our old people try to compete with the young.
In the United States it is almost an ideal for the father to be the brother
of his sons, and for the mother if possible to be the younger sister of her
daughter (Jung, 1984).
What the altemative should be is an open question for Jung. Cultural creativity, preservation of traditions, idealistic activities, self-fulfillment, realization
of previously suppressed life goals, self insight, existential searching, contemplation, development of emotional life, practice of religion, and, finally,
work aimed at "discovering death as a goal to strive after" are some of the
candidates that are discernible in his text. But they cannot be ranked in order
of preference, nor should they be considered as comprising a complete list.

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What is most significant is not what the altematve is, but that the individual fmdsand gets help in fmdinga directon to life that is in line with
his or her physical, mental, and cultural prerequisites. "I have observed,"
says Jung, "that a directed life is in general better, richer and healthier than
an aimless one, and that it is better to go in forwards with the stream of time
than backwards against it."
In the activity theory, aging is considered a direct continuaton of earlier life. The disengagement theory is an attempt to explain why some elderly
individuals deviate from that pattem. Jung's formulaton is critcal to civili-^
zaton. The norms prevailing in Westem society lead the aging individual to
abandon his or her tme needs. What the theories have in common, however,
is that they presume that all people entering old age have the same needs and
problems. But scientific studies indicate that old age is just as full of nuances
as earlier stages of life.
While all these theories are fairly well-known within elderly care, the
activity theory has been dominant. Much of the work during the past 10-15
years has dealt with activaton, often coUectve, in the form of outngs, bingo,
dancing, or gymnastcs. Care staff and relatves arrange these actvites with
the best of intentons. If everyone does not partcipate in bingo or in going
for a walk, this is felt to be something of a failure. But the needs of someone
in the fmal phase of life can be totally different than those extrapolated from
(younger) staff members' preferences; nor do they always coincide with what
has characterized the elderly person's earlier life.
An elderly man I know had been an enthusiastc amateur gardener all
his life. He was offered a room at a nursing home located next to a common
garden area. Everyone thought this was the right place for him. But to everyone's surprise, the man declined the offer. The lesson here is that planning a
person's care on the basis of a projection of his/her earlier life can be quite
destructve. People's physical and mental conditions undergo continual
change, resulting in changes in their preferences and interests. This is especially true for someone who contracts a long-term, and possibly serious,
illness. The man in the above example had had a stroke and was partially
paralyzed. He did not want to live next to the common garden area since this
would involve a continual confrontation with his incapability.
2. Becoming 111 and Being III
What does contracting a chronic disease mean for the afflicted individual?
Michael Bury formulated the sociological conceptualization that is probably
the most influental in this field in the early 1980s. Bury (1982) considers
becoming ill as an event that threatens the life of the afflicted person in many
respects:

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(1) Earlier habits and conceptions that were previously taken for granted
lose their stamp of being a matter of course;
(2) The event threatens the person's identity and perception of self;
(3) The basis for social interaction between the afflicted person and those in
his/her social network changes. A risk consequently exists that some old
relationships will be lost. The character of those that remain will change
in a more-or-less radical way.
The perception of ilhiess as a biographical disruption focuses primarily on
the changes that occur when a person becomes ill. Thus it can be understood
as having the same basis as Talcott Parsons's sick role theory and the measurements of life quality that have been so popular in recent years. In both
cases, the ill person is considered to be a primarily passive victim of extemal
circumstances. But akeady apparent in Bury's original article is that he is
mainly interested in the action aspects of illness. That interpretation also
receives strong support in a later review article, in which Bury warns that a
risk exists that the plain enumeration of illness-related difficulties that frequently occurs in empirical studies gives an incomplete picture of the illness
process. The difficulties and losses are incontestable, but are not something
with whieh the sufferer lives passively. They can instead be thought of as
challenges that, with the aim of normalization, he or she and those close to
him or her continually deal with (Bury, 1991). The biographical disruption
consequently comprises a series of "losses" and "work" (also see Corbin and
Strauss, 1988). In this respect. Bury differentiates three concepts that are
often confused with one another: coping, strategy, and style. This distinction
is further developed in one chapter of Health and Illness in a Changing Society (Bury, 1997).
(1) According to Bury's understanding, coping has to do with the methods
the ill person uses to manage his or her situation emotionally and to restore positive self-esteem. It can comprise attempts to deny the illness or
to seek consolation by means of comparisons with others whose situation
is worse. Coping has a strong cognitive element.
(2) Strategies are the way in which the ill person, often in interaction with
his or her family, tries through his/her actions to deal with illness, daily
life, and social interaction. An example is withholding knowledge about
the ilhiess from others, which can be done to avoid stigmatization.
(3) Style reflects the notion that different people can have different attitudes
toward illness. For example, some people more-or-less consistently refrain from properly carrying out their medical treatment and try to live as
they did before; others sometimes take care of themselves, and sometimes do not; while for some, the illness can function as a platform for a
new lifestyle.

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Expressed in philosopher Fredrik Svenaeus's phenomenological language,

Bury's version of lived illness is, consequently, not only "unhomelikeness"
but "unhomelikeness wanting to get home" (Svenaeus, 1999).
The conceptualization of illness as a biographical dismption has guided
many empirical studies on chronic illness (for an example, see Kelly, .1992).
It has also acted as a foremnner to the increased interest in recent times in
stories of illness and the frmctions of narratives in connection with serious
long-term illness (Kleinman, 1988; Frank, 1995). Although influential in
these two diverse ways, the conceptualization is primary a "crisis model,"
based largely on the course of events around the time the person becomes ill.
As Ann-Christine Gullacksen (1998) points out, however, chronic illness is a
continuously ongoing event, not a temporary crisis.
In the early 1980s, nursing researcher and sociologist Kathy Charrnaz
published an often-cited article dealing more patently with the long-term
implications of chronic illness (Charmaz, 1983). She asserts that "loss of
self constitutes a frmdamental form of suffering for the chronically ill. She
states that a limited life, increasing social isolation, being discredited, and
becoming a burden are the most salient sources of suffering for the ill person,
and also describes how these factors combine with one another, resulting in a
vicious circle where valuable parts of the self are lost. Charmaz's main observations:
(1) Many persons with long-term illnesses become increasingly confined to
their homes. They therefore live a limited life where they lack the possibility of developing their identity and self-esteem. The illness becomes a
focus in life, and values such as independence and individualism become
difficult to exercise. Since many chronic illnesses are unpredictable,
anxiety also arises conceming what can happen outside the safety of
home. Commonly, a sick individual will live a more passive and limited
existence than would seem necessary from an objective point of view.
(2) Increasing social isolation follows as a consequence of the limited life.
Many previous contacts are lost because the ill person cannot take part in
several social activities. If the sufferer is not retired, he or she can also
be forced to change jobs or totally stop working. Medical treatment can
also easily lead to isolation. It takes time and is an activity that is not
shared with others. In addition, since a mutual basis of experience is
lacking, the treatment is not something the ill person can talk about with
just anyone. Isolation easily causes the person's attention to focus on his
or her failing body. In and of itselfbut often along with feelings of
shame and inferioritythis introversion can easily lead to a negative spiral of further isolation. Since self-esteem is built up and maintained
through social interaction, the process will almost inevitably result in
more negative self-esteem.

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(3) In relationships with others, the ill person will commonly be treated in a
discrediting way. For example, many chronically ill persons fmd that
those around them talk about them rather than with them. When relatives
or others close to the sufferer are present, people often tum to these individuals rather than the ill person. In addition, the ill person is frequently
considered incapable of doing many things without being asked to do so.
The significance of such incidents depends on who is doing the discrediting, the situation in which it takes place, and how often the discrediting
episodes occur. The episodes form part of the ill person's sense of self if
they occur in situations in which he/she feels vulnerable. They are also
more devastating if the ill person identifies with those doing the discrediting.
(4) The increasing economic, physical, and mental dependency that often
accompanies serious chronic illness causes the sufferer to experience
himself/herself as a burden to others. In Westem cultures, where values
such as independence, individuality, and the ability to take action are of
central importance, the illness often results in a powerful blow to the
self-esteem. When even simple everyday tasks become nearly insurmountable problems, the experience of being a burden leads to an increased vuhierability that results in conflicts or in a tendency to withdraw from contacts with the outside world.
The conceptions of ilhiess as "a biographical disruption" and as "loss of self
are central to the sociological understanding of the illness state and have
points in common with some phenomenological analyses of illness (for example, see Toombs, 1992; and Svenaeus, 1999). They also complement one
another. The first focuses on the time when the disease fnrst occurs, while the
second deals in a more apparent way with long-term problems. The fnrst is
fairly action-oriented, but the second emphasizes different sources of suffering in chronic illness. Worth noting is that Charmaz, in a later elaboration of
her theoretical structure, differentiates three modes of the experience of illness: The illness state can be subjectively understood as an interruption in
everyday life; it can be understood as an intrusion; and it can immerse the
sick individual in a separate world of ilhiess (Charmaz, 1991).
The wider implication of such a formulation is that the conceptualization of illness as "loss of self " cannot be understood as a declaration of an
empirical adherence to law. The condition in which the sufferer is immersed
in his or her illness is probably the only one in which loss and suffering are
total. Keeping in mind that many chronic ilhiesses are serious right from the
beginning and that others are of a progressive character, "loss of self " is a
tendency. The same is naturally the case for the biographical disruption.

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3. Courses and Trajectories of Illness

A means of handling disease-related variations and avoiding the overgeneralization of conceptualizations is to talk about different courses of illness. For example, diseases can be stable, on a downhill tiend, on an uphill
tiend, or fluctuating back and forth. The course of illness can be discussed
from a disease perspective or an illness perspective. In the disease perspective, the course of illness is described in terms of changes in function and
structure in the biological organism.
The illness perspective deals instead with the perception the sufferer
himself or herself has conceming the course of illness, on a past-presentfuture axis. Of cential interest here are not biological changes, but the
expected physical suffering and its implications in practical, psychological,
and social respects. For purposes of distinction, the term "illness tiajectory"
is sometimes used as a designation for the illness perspective. Juliet Corbin
and Anselm Stiauss have defined the concept in the following way:
"Course of illness" is both a commonsense and professional term. In
contiast, "tiajectory" refers not only to the physiological unfolding of a
disease but to the total organization of work done over that course, plus
the imjjact on those involved with that work and its organization. (And
then the consequences of that impact for the work itself.) (Corbin and
Strauss, 1988, p. 33)
The trajectory concept focuses on the active role people play in shaping the
appearance and meaning of the course of ilhiess. By considering "the total
organization of work done over that course," Corbin and Stiauss also want to
stress that the care staff are not the only persons involved. The primary sufferers themselves, their family, and a large number of other persons and
institutions are also comprised in the total work organization. For example,
this work can involve efforts on the part of the social insurance office, neighbors, and friends, and efforts by patient associations and other voluntary
organizations. Since this definition depicts illness as something managed by
many actors in interaction with one another, we should be able to talk about a
sociological or social-psychological definition of the course of ilhiess.
4. Uncertainty and Its Consequences
In a critical review of the sociology of illness, Peter Conrad (1990) calls
attention to a source of suffering in chronic illness not present in the conceptual frameworks of Charmaz and Bury: uncertainty. Uncertainty is since a
long time a cential problem in clinical work. In particular, people have emphasized the difficulty in making correct diagnoses and the consequences this

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can involve for health-care staff and patents. But Conrad also discems other
forms of uncertainty that have been demonstrated in empirical research:
(1) Frequently, uncertainty arises when the first physical discomfort begins
to appear. Is this a sign of illness or something totally normal and temporary? Many research results indicate that a strong tendency exists not to
seek care untl the situaton becomes so difficult that all everyday routines have almost collapsed and a large spectmm of everyday explanatons have been tested. Another element of uncertainty present during
this inital phase concems when problems can best be communicated to
others. Should I tell my family now and risk worrying them urmecessarily, or is it better to wait and see how the situaton develops? Such questions often worry the person who is starting to feel unwell.
(2) Another form of uncertainty arises when the problem has been defined
as "probably medical." The person himself or herself and the family are
in a state of uncertainty conceming what kind of an illness it is. Before a
diagnosis has been made, the ill person and family experience great
worry about the final verdict. In the spectrum of illnesses that pop up in
their imaginaton, cancer is the most frightening. In those cases in which
a diagnosis cannot be made immediately, the inital worry frequently becomes further intensified. The possibility that informaton about a serious illness will be withheld crosses the minds of many.
(3) When the diagnosis has been made, a third form of uncertainty arises
conceming what is involved in living with the illness in everyday life,
how the illness is going to develop, how the treatment will work, and the
side effects of the treatment. No easy answers to these questions exist.
Therefore, they often develop into lasting, central elements of how the
illness is experienced. Not of the least concem is uncertainty about how
the ilhiess will develop, which is hard to bear and traps ill persons and
their families in a state somewhere in between hope and despair.
(4) The fourth and fifrh forms of uncertainty concem short- and long-term
changes in physical well-being. Illnesses like multple sclerosis, leukemia, and diabetes are initally characterized by altemate, relatively
drawn-out periods of improvement and deterioraton that place obstacles
in the way of long-term life planning. With some other illnesses, like
Parkinson's disease and rheumatoid arthritis, the body fluctuates from
day to day or from hour to hour between an ahnost total lack of symptoms and severe or troublesome symptoms. The difficulty in predictng
when the symptoms will strike next makes it more-or-less impossible to
plan and organize everyday life. Many persons with severe chronic illnesses therefore come to live from day to day.
Bury (1988) mentons an additional form of uncertainty: that the ill person
cannot know beforehand how others will react if he or she chooses to dis-

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close information about the ilhiess. Disclosure can be functionally significant

and can lead to greater understanding on the part of other people. But disclosure also risks causing people to withdraw from further contact with or to
discredit the ill person. Since reactions to news about illness are seldom
communicated directiy, frequentiy, the ill person does not even know afterward where he or she stands or how he or she is perceived. Without a clear
awareness of the situation, ill people find it hard to know how they should
act. Others and their attitudes largely shape the ill person's life situation
and by extension, his or her judgment of it.
Many of the forms of uncertainty mentioned here are replaced in time
by an increasing certainty, although never to the point of absolute certainty.
The most extreme consequence of Conrad's observations is that all attempts
to defme the essence of the illness experience inevitably distort to some extent its basic meaning. From the perspective of the sufferer, the meaning of
the illness is never final but emerges from his or her interactions with the
physical and social world. The meaning also changes with changes in the
underlying biological state. Seen realistically, a good deal of the interactions
with others and even some of the biological changes can be assimilated
within an existing form, but Charmaz's three modes of experience also indicate that the subjective meaning of the ilhiess can change qualitatively from
one time to the next.
5. Discussion
I have presented and discussed two influential medical-sociological conceptualizations of chronic ilhiess, namely "illness as a biographical disruption"
and "ilhiess as a loss of self-esteem." Theorists sometimes direct the objection toward both conceptions that they are not able to sufficiently distinguish
aging from illness. They do not give a misleading picture of what it means to
be chronically ill (irrespective of age), but some of the processes that the ill
person goes through are also a part of normal aging. Even the healthy elderly
person often must change his or her habits, loses earlier social contacts, is
subjected to discrediting actions, is considered less worthy, has a poorer
economic situation, and loses his or her previous independence. But what can
seem like a weakness from one perspective can be seen as a strength from
another perspective. As tools for understanding the elderly in elderly care,
these conceptions benefit from this duality. Ill, elderly, or ill and elderly?
With some changes, these theories can provide a more in-depth understanding of these human conditions.
Both of the basic conceptualizationsand the conceptual amplifications
and clarifications I have made^promote greater understanding of what it
means to have a prolonged and serious illness. They also give us the beginnings of a language through which experiences of illness can be commimicated and discussed. In this way they complement the medical understanding

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of ilhiess. They make the ill individual, not the disease, visible. In-depth
knowledge is a goal in itself Tolerance and genuine communication grow
out of understanding. I could end here, but will retum to the themes in the
article's introduction by pointing out some practical consequences for elderly
care, some of which may be obvious and aheady considered, but others of
which have received less attention.
(1) Contracting a serious long-term illness almost always means a loss of
self-esteem, as Charmaz (1982) points out. Elderly-care staff will likely
try to be supportive by talking about "the good old times." Used with
care, such communication can be good. A risk exists, however, that it
will lock the receiver of care into continual grief over what has been lost.
Perhaps any ill person will miss what she or he has had previously, but
feeling grief means finding yourself in a state where you cannot see
anything to replace what was lost. In order to help the sufferer build up
his or her self-esteem, that person must be activated in a way that suits
him or her. To identify the "right" activities, the earegiver must leam
about the sufferer's hierarchy of values. The most suitable activity is the
one highest up in the system of preferences that is at the same time manageable despite physical limitations. Subjecting the elderly and ill individual to activities that he or she cannot manage further worsens selfesteem. Subjecting a person to activities that are not at all associated
with his or her preferences can be offensive.
(2) Physical discomfort that is lasting but for which no medical explanation
has been determined causes worry and sometimes anxiety (Bury, 1982;
Conrad, 1990). Care staff must therefore be constantiy observant of
complaints from the elderly conceming changes in their physical condition. If the complaints concem discomfort associated with the disease,
that fact should be made apparent to the sufferer. If they concem other
types of discomfort, then naturally this should be followed up medically
as soon as possible.
(3) Someone who has recently fallen ill suffers from physical discomfort
and from uncertainty about how the ilhiess will develop (Conrad, 1990).
Perhaps information about the illness and its treatment should be given
to the elderly person and his or her family. Unfortunately, making sure
that the patient and family have understood such information is not always a matter of course. Nor does it go without saying that new information is supplied when necessary. The family, in particular, can suffer
from a lack of information and insight conceming the patient's illness.
We need to clarify the medical picture for the elderly person and his or
her family. They may find it awkward to ask and difficult to know what
to ask about. The personnel should therefore readily give adequate and

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(5)

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BENGTRICHT
understandable information; the elderly individual and his or her family
should not have to ask for it.
Suffering at the prospect of the friture is due only in part to inadequate
medical knowledge. The primary sufferer and family also experience
uncertainty about how daily life will be affected, both in the short term
and from a slightly longer view (Conrad, 1990; Bury, 1988). Care staff
should map out previous life circumstances with the elderly person and
his or her family and the parties should discuss what adaptations and
changes may be necessary, not only in the present but also later in the
course of the illness. Such "trajectory prognoses" need to be looked over
and revised at regular intervals.
Ilhiesses that fluctuate back and forth generate uncertainty about the
coming day (Conrad, 1990). Plans for the day can be difficult to carry
out if the disease has entered an acute phase. If ambitions have been at a
low level, the body may allow for more than the ill person had initially
counted on. In such cases, flexible care routines should take fluctuations
in the illness into account. One way for the staff to handle the short-term
uncertainty is to consciously prepare alternative plans. If the elderly person is also involved in this, much disappointment and firustration can be
avoided.
A person who works professionally in helping others easily comes to
consider himself and herself and colleagues as the only ones who are
working. The trajectory concept (Corbin and Strauss, 1988) notes that
care is a collective activity in which the elderly person and family are
deeply and continually involved. During the course of a normal day, the
elderly person and his or her family can carry out a good deal of carerelated work that goes more-or-less unnoticed. Not even the apparently
one-sided achievement of giving the elderly person his or her medication
can be carried out without the active effort of the elderly person. Staff
members in elderly care need to develop their ability to identify the
forms of work that are carried out by the elderly individual and family
and take pains to show appreciation for this work.
The patient's needs vary with the type of illness and with where the
sufferer is along the course of the illness. We can divide the course into
different periods. Using Kathy Charmaz's (1992) three modes of experience as an intellectual tool, we can draw the following conclusion: For
the person who still regards his/her illness as "an interruption in everyday life," the need for medical knowledge can be great, to prepare for
what is to come or to attain insight about the condition's status as nontemporary. In both cases, the patient needs information about what the
alternatives to his or her present daily life could be like. For the person
who sees the ilhiess as a permanent "intrusion," the need for help and
support for reorientation is often dominant. For the person who is
"immersed in illness," existential questions and needs can instead come

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to the foreground. Sometimes the "immersion" can have a mental rather

than a physical cause. Needs can then be of different kinds, all the way
from the need for medication to the need for kinship or self-flilfilhnent.
This way of looking at the variation in needs is fairly rough and incomplete, but it provides a hint as to where to begin the work of identifying
the individual's needs.
(8) As human beings, we all maintain a story about ourselves. Some put this
down on paper in the form of a written autobiography, but many bear it
in silence or describe only fragments of it in interaction with others. The
story contains relevant elements of our life and stietches from the past
up until the present, and then onward into an imagined future. What
characterizes our self-story is that a common thread runs throughout it:
One thing leads to the next. The story provides a feeling of identity,
context, and direction. When a person contiacts a serious, long-term illness that common thread is lost. Becoming ill is a life event not present
in the earlier story that must in some way be incorporated into it. To regain the feeling of context two questions in particular must be answered:
"How did I end up here?" and "What is the fliture going to be like?"
Care staff talking with the elderly person about his or her earlier life in
general is an event that often happens naturally. The theories I have presented here point out that it may be constructive to give the elderly individual the opportunity to talk about his or her illness experiences. Only
in this way can his or her life be patched up again and be understandable. Through the story, the sufferer's feeling of estiangement and isolation can be broken through.
(9) Realizing the vision for care described above requires a care organization in which different staff members have special responsibility for and
develop close, continual contact with individual elderly persons and their
families.
It may appear that the above points overstep the framework of needs I presented as a base for care in the intioduction of this article. But they do lie
close to it. Many points deal with measures for reducing the uncertainty that
serious illness creates. Uncertainty is the direct opposite of the security that
Maslow (1954) considers a basic human need. Even the second-last point
that the elderly person and family should have the opportunity to talk about
their experiences with respect to the illnessdeals in part with reducing
uncertainty. We all have a need to know who we are, where we come from,
and where we are going. By relating his or her case history, the elderly individual can obtain increased clarity conceming those questions, which are
perhaps the most basic of all with respect to the possibility of feeling a sense
of security.
As I have suggested, the telling also creates a feeling of kinship with
others. Several of the points deal with ways of stiengthening self-esteem.

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BENGTRICHT

Translated into Maslow's hierarchy of needs, the needs for appreciaton and
self-frilfilbnent are in focus in those cases, rather than the need for security.
Read in this way,' the theories touched upon here do not fall outside the
framework of needs. They can be considered rather as a means of filling the
otherwise empty and meaningless framework with something concrete.
A final note: Many of the visions for care in the above list are naturally
valid for the care of all persons with serious long-term illnesses. I have focused particular attention on elderly care because of the extreme loss of previous everyday life and social relationships that people obliged to live their
lives within an instituton will come up against. Biographical disrupton and
loss of self, which for.a person who is stll living relatvely independent of
society's support structure can best be considered as tendencies in his or her
existence, are a definitive and irrevocable reality for a large number of persons who are elderly and seriously ill.

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