Untitled

Chapter 1
Introduction
The proportion of the North American population aged 65 and over is
increasing rapidly. In the United States, the proportion of people aged 65
and over was 12.6 pcrcent in 1992, and is expected to rise to 20.2 perccnt
by the ycar 2030 (U.S. Bureau of the Census, 1993). In Canada, this proportion was 10.6 percent in 1991 (Statistics Canada, 1992), and is expected
to rise to 21.8 pcrcent by the ycar 2030 (Statistics Canada, 1989). These
projections have focused attention on the health problems and social conditions of the elderly, in particular the progressive, degenerative dementias
such as Alzheimer's disease, multi-infarct dementia, and post-stroke dementia. The trend away from institutionalization and toward family care
of older people who are frail or cognitively impaired has generated numerous studies on the burden on family members providing care to an
elderly relative. Although much useful information has been gained from
this research, it has been limited by narrow conceptions of the experience
of caring and the contextual aspects of family caregiving. What is needed
are longitudinal studies involving thick description (Geertz, 1973) that provide insight into the contextual aspects of family caregiving and the dynamic nature of the caregiving relationship. This book, which is based on
a two-year qualitative study, explorcs the nature of, and changes in, the
family context and family interaction when one member o f thc household
comes to be defined as having dementia.
Dementia attacks not only the body, but in particular the mind and thc
very personhood of the patient. For family members, the alteration in the
person's identity and the loss of a shared past and shared memories is
2
One Day a t a Time
devastating. The purpose of this book is to describe how families go about
day-to-day living with this condition. It is about the ups and downs they
experience over time and about the ways in which they find meaning in
these experiences. Many family members say they manage by taking life
"one day at a time." According to Mitchell (1990), living day-by-day involves making the best of what is and accepting what comes. This strategy
allows people to live with today's limitations, while still maintaining hope
for tomorrow's possibilities (see also Forbes, 1994). One Day at a Time,
thcrcfore, is the title chosen for this book, to carry the message that there
can be hope even in seemingly hopeless situations.
Drawing on three theoretical perspectives, namely the family stress perspective, the symbolic interactionist perspective, and the family systems
perspective, this book provides a holistic view of caring as a reciprocal
relationship that involves all members of the family, as well as their surrounding informal and formal social network. This is referred to as a contextclalized (Boss, 1988) model of caring. This model comprises the entire
social context-both within the family (i.e., their internal context) and
outside the family (i.e., their external context)-in which family members
construct and act upon their definitions, interpretations, and evaluations
of the situation. The family context includes not only the family itself, but
also friends, neighbors, and the numerous health care professionals.
agency staff, and institutional personnel who enter into, and in unknown
ways affect, its naturc, quality, and construction of reality. This organizational enzheddeciness (Gubrium, 1987) and the qualitative nature of the
family context of many older people have received only limited attention
in recent research.
It is hoped that this book will contribute to a better understanding of
illness as a social phenomenon and the nature of the caring relationship,
that it will provide insights about the provision of holistic care, and that
it will aid in the developmcnt of programs that are perceived by families
as addressing thcir needs and the well-being of the family unit.
This introductory chapter begins with a discussion of dementia and its
symptoms and behavioral manifestations. This will be followed by an overview of the research that has been done on the care provided by families
to elderly relatives with dementia, highlighting some significant questions
that remain unanswered. Finally, it provides a brief outline of the design
and methodology of the study on which this book is based.
DEMENTIA
The term denlentia as used here refers to chronic, irreversible, degenerativc conditions such as Alzheimer's disease, multi-infarct dementia, and
post-stroke dementia. Accurate statistics on the prevalence of chronic dementia are difficult to obtain because the disease is often misdiagnosed
and under-reported. The relatively few epidemiological studies that have
been done have employed different criteria for inclusion, different diagnostic procedures, and different age categories. In the United States, it
has been estimated that 11.3 percent of the population aged 65 and over
has Alzheimer's disease. There is a dramatic increase with age: from 3.9
percent of persons aged 65-74, to 16.4 percent of those aged 75-84, and
47.5 percent of those aged 85 and over (Evans et al., 1990). In Canada, it
has been estimated that 5.1 percent of the population over 65 suffers from
Alzheimer's disease: 1.0 percent of persons aged 65-74, 6.9 percent of
those aged 75-84, and 26.0 percent of those aged 85 and over (Canadian
Study of Health and Aging, 1994). Alzheimer's disease accounts for almost
two-thirds of all dementias.
Patients with a diagnosis of Alzheimer's disease or one of the related
dementias display three main types of symptoms:
1. Losscs in cognitive capacities. Initially this affects mainly short-term memory
and orientation in time and place, but in later stages of the diseasc, long-term
mcmory and recognition may also be affected.
2. Difficulties in the pcrformance of instrumental and personal activities of daily
living.
3. Changes in mood or personality and concomitant declines in interpersonal functioning, which somctimes includes a loss of "social graces" (Mace & Rabins,
1991).
In the more advanced stages, patients may exhibit incontinence, gait
changes, and speech impairment. The configuration of symptoms and thc
rate of decline vary from person to person. The onset of dementia can be
sudden, as in post-stroke dementia; stepwise, as in multi-infarct dementia;
or gradual, as in dcmcntia of the Alzheimer's type. The cause of Alzheimer's disease is still unknown, and a definitive diagnosis can be made only
on postmortcm autopsy (Cummings & Benson, 1985). Some possible
causes that arc under investigation include genetic predisposition, biochemical abnormalities, decreased oxygen flow to the brain, environmental
toxins, infectious agents, dietary habits, and immune system defects (Kuhlman ct al., 1991). The development of computerized technology, such as
computerized axial tomography (CAT) scans, position emission tomography (PET) scans, and magnetic resonance imaging (MRI), has stimulated research into abnormalities in the brain structure and function of
dementia patients and ways in which these may be altered by drug therapy.
The search for the cause and cure of dementia has often deflected attention away from studying another important question, namely how families living with a relative with dementia go about managing their
day-to-day life and relationships during this type of illness experience.
Whereas the term disease refers to dementia in terms of abnormalities in
4
One Day at a Time
the brain, resulting in a global alteration in the biological, psychological,
and social functioning of the patient, dementia as an illness is viewed here
as a social phenomenon in the sense described by Benner and Wrubel
(1989): "The human experience of loss or dysfunction. In fact, illness is
the disease understood in terms of its meaning for the self" (p. 131). When
we speak of the family's experience of dementia, we are referring on the
one hand to the way in which the disease is perceived to affect all aspects
of the individual's and the family's life, including their identity, their relationships with each other, and their interactions with the outside world,
and on the other hand to the interdependence between these changes and
the family's pre-illness contextual characteristics.
RESEARCH ON FAMILY CAREGIVING
Since the 1980s, there has been an increasing trend away from institutionalization and toward community care of older people with cognitive
impairments. These people are usually not admitted to long-term care
facilities until the family is no longer able to care for them at home. Numerous studies have attempted to assess the effects of the burden of caregiving on family members (see summaries by Gubrium & Lynott, 1987;
Stull, Kosloski, & Kercher, 1994; Zarit, Pearlin, & Schaie, 1993). These
studies revealed that community carc often amounts to "total family carc"
(Gilhooly, 1986).
Past rcsearch on family caregiving (e.g., summaries by Dhooper, 1991;
Dillehay & Sandys, 1990; Kuhlman et al., 1991) has made important contributions to knowledge on this subject, particularly in the following five
areas:
1. The range of tasks perfornzed and support provided by caregivers.
Research on the rangc of tasks performed by primary caregivers has increased our knowledge of the extensive and intensive nature of their involvement in meeting their relatives' needs with regard to personal and
instrumental activities of daily living (e.g., Montgomery, Gonyea, & Hooyman, 1985), money management, decision-making, arranging social outings, and supervision (Rankin, Haut, & Keefoven, 1992). Other rcscarch
has focused on the role o l secondary caregivers with regard to indirect
assistance; that is, assistance provided to the primary caregiver, such as
financial aid, assistance with shopping, or sitter services (Tennstedt, McKinley, & Sullivan, 1989).
2. B ~ i r d e nexperienced by the caregivers. Another topic of past family
caregiving research has been the measurement of caregiving burden and
its effects on caregiver well-being. Some researchers make a distinction
between objectivc and subjective burden (e.g., Montgomery, Gonyea, &
Hooyman, 1985; Pratt et al., 1985). Objective burden refers to the performance of caregiving tasks and the disruption this produces in the care-
giver's daily life. This has also been referred to as "daily hassles" (Kinney
& Stephens, 1989a, 1989b). Subjective burden refers to the caregiver's
emotional reactions and his or her concomitant behavioral and cognitive
responses to them. Specific aspects of the situation that may be upsetting
to caregivers are the physical and mental health of the patient., in particular such problems as incontinence, wandering, and demanding or manipulative behavior, as well as the caregiver's health, restrictions on the
caregiver's activities, fatigue, and lack of information (Deimling & Bass,
1986; Neysmith, 1994). The importance of attributional or definitional
processes for understanding the construct of caregiving burden has been
emphasized in several recent studies (e.g., Stull, Kosloski, & Kercher,
1994).
Many studies have identified differences in stress and coping by age,
gender, and relationship of the primary caregiver to the person with dementia (see Borden & Berlin, 1990; Harper & Lund, 1990; Harris, 1993;
Parks & Pilisuk, 1991). Another segment of the literature deals with various interventions aimed at alleviating caregiver burden, such as support
groups, day programs. rcspite care, and counselling (e.g., Deimling, 1991;
Gonyea, 1990; Haley, Brown, & Levine, 1987; Whitlatch, Zarit, & von
Eye, 1991).
3. T h e effects of social support o n caregiver well-being. Much research
has been done on the effects of social support on the primary caregiver's
well-being (see summaries by Hobfoll, 1990; Kahana, Biegel, & Wykle,
1994). Although certain types of social support, such as informational,
instrumental, affirmative, and emotional support (see Cooke et al., 1988;
Norbeck, Lindsey, & Carrieri, 1981, 1983) have been identified, debate
still exists about the process(es) by which a particular outcome is obtained.
For example, as Ccoke et al. (1988) note, research on the mediating role
of social support for specific stressor events has focused on both its direct
role in promoting recovery and its role as a buffer against the effects of
stress (p. 211; see also Cohen & Syme, 1985). However, as Hobfoll (1990)
points out, there is a need to study "how this social commodity is obtained,
maintained and viewed" (p. 436). There is still much work to be done in
order to understand thc processes involved in social support and its effect
on outcomes such as caregiver well-being or caregiving burden (Foulke,
Alford-Cooper, & Butler, 1993; Stewart, 1993; Stull, Kosloski & Kercher,
1994). Researchers are urged to pay particular attention to the types of
social support that are needed for families with different styles of managing and in different phases of the illness career (see also Fortinsky &
Hathaway, 1990).
4. Service zitiliz(1tion patterns. Another segment of the literature on family caregiving is devoted to service utilization patterns (e.g., Biegel et al.,
1993; Caserta et al., 1987). In the majority of these studies it was found
that the use of supports from formal organizations does not decrease the
6
One Day at a Time
supports provided by the informal social network. Many families have very
limited assistance from the formal sector, in particular homemaking services and respite services, both in-home and institution-based (Land,
1991). Other studies have focused on factors affecting the decision to admit older relatives to a nursing home (e.g., Colerick & George, 1986; Lieberman & Kramer, 1991; Pruchno, Michaels, & Pctashnik, 1990).
5. Caregivers' motives. The final contribution of past research on family
caregiving pertains to insights about motives for caregiving or reasons for
involvement (Lazarsfeld, 1982; see also Le Navenec, 1992), o r conversely,
reasons for giving up that role. Shapiro and Tate (1985), as well as
Horowitz (1985), have emphasized that institutional placement often occurs when the primary caregiver has few informal or formal supports or
has experienced changes in circumstances (e.g., coping, health, finances,
etc.) rather than a change in the older person's health status. Other researchers emphasize the importance of pre-illness relationships (e.g., Cicirelli, 1983). To address the question why families help, Schulz (1990)
summarizes the findings by making a distinction between an egoistic or
self-serving motive (i.e., helping is motivated by the anticipation of rewards for helping and/or punishment for not helping) and an empathic or
altruistic motive (i.e., helping is motivated by concern for the welfare of
others) (p. 29).
Perhaps the most important contribution of these past studies on family
caregiving is that they have served as a stimulus for a new movement in
family research. There has reccntly been a recognition of the need "not
so much to count the number of families exhibiting some set of characteristics, but to understand how some families gain insight into the meanings of their experience" (Gilgun, Daly, & Handel, 1992; Gubrium, 1991),
and to learn more about the nature of "the caring relationship" (Qureshi
& Walker, 1989; Walker et al., 1990) or the processes involved in caregiving (Kahana, Biegel, & Wykle, 1994). Gubrium and Sankar (1990) point
out that
the home care experiencc is only dimly understood. . . . T h e simple task of defining
what is caring-how it is variously understood by those concerned-seems to b e
furthest from the minds of most researchers.. . . N o n e seems to have wondered
whether caring and caregiving are the same or contrasting orders of experience.
( P 8)
Abel (1990) notes that what has been mostly ignored in past research
is that the care provided by the family does not exist in a vacuum but
rather is embedded in intimate personal relationships. Similarly, Qureshi
and Walker (1989) emphasize that "care comprises a social relationship
as well as a physical task. . . . Care is based on both affection and service,
two interlocking elements [that] have too often been artificially separated
for the purpose of analysis by different disciplines." Caring includes not
only the performance of various activities that are associated with caring
for someone but also the patterns of interaction that are associated with
caring about someone (Benner & Wrubel, 1989; Foulke, Alford-Cooper,
& Butler, 1993). Abel (1990) recommends that researchers extend their
focus beyond what she calls the "domestic labor approach," and instead
explore how various types of relationships affect not only who does what
for whom but also the qualitative nature of the care that is rendered. The
late Dr. N.W. Bell, to whom this book is dedicated, maintained that researchers tend to "individualize" caregiving; that is, to view it as what one
person, the caregiver, does to another, the care-recipient (personal communication, August 1991). H e suggested that thinking about caregiving in
systemic terms, as representing particular kinds of relationships, would
redirect researchers to explore some of the major relationship factors, such
as the loss of predictability in the relationship.
Just as the basic question, "What is caring?" has not been adequately
answered, neither has the question, "What is family?" (Bernardes, 1993;
Gubrium & Holstein, 1990). In the family caregiving literature, "family"
usually refers only to the caregiverlcare-recipient dyad. Furthermore, as
Kahana and Young (1990) point out, closer examination of the literature
reveals that most studies focus mainly on the caregiver and his or her wellbeing and effectiveness in caregiving (p. 38). Only recently has research
addressed the role of other family members in caregiving (e.g., Abel, 1991;
Finley, 1989; Fisher & Lieberman, 1994; Imber-Black, 1991; Keating et al.,
1994; Land, 1991; Qureshi & Walker, 1989; Tennstedt, McKinley, & Sullivan, 1989).
Another research question that has not been adequately addressed is
the family's perceptions of social support. Little is known about the types
of social support that are perceived to be needed by the patient, the types
of social support needed by the significant other, when and by whom it
should be provided, the difficulties of access to services, and the appropriateness of specific services (Byrne & Scbastian, 1994; Land, 1991). In
many caregiving studies, this question has been approached by the measurement of social support as a variable that mediates in the experience of
burden. Other studies have focused on the directionality of support or
individual constraints to mobilizing social support (see overview by Cohen
& Syme, 1985; Gottlieb, 1989; Kasl & Cooper, 1987; Stewart, 1993). Recently, some researchers have focused on the costs, or negative aspects of
receiving support (see overview by Cicirelli, 1990, pp. 221-223), and on
the incongruency in perceptions of what is considered supportive, both
within the family and between the family and professionals (e.g., Miller &
Goldman, 1989; Pollit, O'Connor, & Anderson, 1989; Townsend & Poulshock, 1986; Zweibel & Lydens, 1990).
A related topic is that of caregiver satisfaction. A number of researchers
8
One Day at a Time
have measured the relationship between the social support caregivers receive from their informal social network (e.g., Pagel, Erdly, & Becker,
1987) or the formal care system (Everett & Nelson, 1991; Heller, 1990)
and caregiver satisfaction. Others have measured caregiver satisfaction as
an outcome of the family's perceived self-efficacy (e.g., Townsend &
Noelker, 1987). Caregiver satisfaction has also been studied in association
with various aspects of objective and subjective burden (e.g., George &
Gwyther, 1986; Motenko, 1989). Few researchers, however, have described
satisfaction in terms of mutuality in the relationship between the elder and
the significant other (e.g., Farran el al., 1991; Hanson, 1989; Hirschfeld,
1983). Similarly, few researchers have explored satisfaction with the care
received from the point of view of the elder (e.g., Kitwood & Bredin, 1991;
Mukherjee, 1989). This would suggest that we may need to redefine satisfaction and in future studies explore it as relational satisfaction or
nzutriality (N.W. Bell, personal communication, August 1991).
Little attention has been paid in the caregiving literature to the experiences of the elder. Many of the previous studies that included the carc
recipient in the investigation limited their discussion to this person's sociodemographic characteristics, dependency needs, or behaviors that create stress or conflicts for the caregiver (Sheehan & Nuttall, 1988). Often
referred to as an anonymous "loved one," the dementia patient as a person remains unknown (Barer & Johnson, 1990; Cotrell & Schulz, 1993;
Kitwood, 1990). What also remain unexplored are the burden that the
patients with dementia are experiencing and the types of support that
significant others and community agencies provide, or could provide, to
them. Hence, we have no idea how these patients could function in a
maximally supportive cognitive environment and how that might alter the
various types of burden experienced by the significant others and the patients (Cavanaugh et al., 1989, p. 158; Mills & Coleman, 1994).
In summary, past research on family caregiving has been limited by
narrow conceptions of the experience of caring and the context in which
it takcs place. As Abel (1990) notes, the contcxtual aspects of family caregiving are often packaged in the literature according to the type or number
of inediating variables (e.g., Schulz, 1990), such as physical, emotional, or
financial problems, as opposed to their qualitative aspects. Thus, what appears most needed at this time are studies involving thick description
(Geertz, 1973; see also Denzin, 1989; Hammersley. 1989) that conceptualize caring as a relationship (Qureshi & Walker, 1989) and formulations
of relational and dynamic models of caregiving such as those suggested by
Kahana, Biegel, & Wykle (1994). Some recent studies taking this approach
contribute to the much-needed, enlarged undcrstanding of the experience
of caregiving and the quality of the caring relationship (e.g., Globerman,
1994; Gubrium, 1988; Hasselkus, 1988; Lindgren, 1993; Miller, 1990;
Orona, 1990; Rubinstein, 1989; Sallstrom, 1994; Ungerson, 1987; Wilson,
1989; and others referred to in subsequent chapters of this book).
Research on family caregiving has also encountered several methodological problems. One such problem is sample bias. The majority of caregivers in these studies are volunteer participants involved with the formal
care system and are recruited by formal service providers. These selfselected convenience samples have two shortcomings: (a) a number of
groups are under-represented, such as male caregivers, families in rural
areas, non-Caucasian families, families in lower socioeconomic groups, and
those families whose relatives have a dementia other than Alzheimer's
disease (Raveis, Siegel, & Sudit, 1990, pp. 57-58), and (b) little is known
about those elderly people who rely solely on their families and hence
have no contact with, or awareness of, the formal care system (Barer &
Johnson, 1990, p. 28).
Another methodological problem, as Raveis, Siegel, & Sudit (1990)
have pointed out, is that the majority of studies of famiIy caregiving are
cross-sectional in nature, thereby making them "ill-suited for addressing
some of the most pressing issues" in this area (pp. 61-62). One central
issue, according to Niederehe and Fruge (1984), is the need to explore
"what is most stressful to the family and whether this changes over the
course of the illness" (p. 14). Thus, longitudinal studies are needed in
order to examine adequately the "qualitative features of the patient's behavior and the interpersonal relationships surrounding thc patient" as they
change over time (p. 14).
THE STUDY ON WHICH THE BOOK IS BASED
Sample
The study on which this book is based (Le Navenec, 1993) was conducted in western Canada in the 1980s. Thirty-nine families were recruited
through public lectures and newspaper articles and with the help of the
staff of community health and long-term care agencies. For the purpose
of the study, a family was defined as "a durable social system madc up of
individuals held together by common ancestry or marriage andlor by
strong reciprocal affections and loyalties." No attempt was madc to choose
participants on the basis of a medical diagnosis of dementia. Instead, the
definition of the problem made by the families themselves was used for
sample selection. Many families highlighted in their narratives of the illness experience, first and foremost, the elders' difficulties with "remembering and doing things" and other functional changes mentioned earlier.
Regardless of whether the illness was sudden or gradual in onset (see the
psychosocial typology of chronic illness by Rolland, 1987), the participants
in this study referred to their relatives' conditions in words similar to those
10
One Day at a Time
used in a brochure by the Alzheimer Society of Canada, as a disease that
"steals the mind and breaks the heart" and one that "you cannot fight
alone."
In the selection of families, an effort was made to include those from
different settings (urban, semi-urban, and rural communities), as well as a
variety of family subsystems. The latter included marital subsystems consisting of husband and wife, parent-child sztbsystems consisting of the elder
and either a daughter or a son, and extended family s~rbsystenzsmade up
of the elder and two or more significant others, usually a spouse and one
or more adult children, or an adult child and his or her spouse and children. Thus, the term family in this book is used for all three types of
subsystems. We refer to the older person with dementia as the elder or
the index person; to the person(s) most involved with the elder, such as a
spouse or adult child, as the significant other(s) or caregiver(s); and to
other family members who are not part of the household, such as siblings,
adult children, and in-laws, as the extended family. All of the families were
Caucasian. Although the majority were of British origin, several other
European backgrounds were represented. Using the Blishen and McRoberts (1976) Occupational Prestige Scale, the preretirement occupations
of household heads (index persons or significant others) in all three types
of subsystems fell primarily in the top two occupational categories. A demographic profile of the families is provided in Appendix 1.
Methodology
The study followed an exploratory and descriptive design utilizing a
multiple case study approach. Over a period of two years, each family was
interviewed by the first author at least twice; some were interviewed three
or four times, depending on the family's location. the condition of the
elder, and the family's availability. The majority of interviews took place
in the home, but as the study progressed, some of the interviews were
conducted in nursing homes. Whenever possible, the elder as well as the
significant other(s) were invited to participate. In some cases, members of
the extended family were also present or were interviewed separately. The
interviews were about two to three hours long and were recorded on audiotape. From the audiotapes and fieldnotes, a case history was compiled
for each family, using thick dcscription (Geertz, 1973; Denzin, 1989; Hammersley, 1989). These case histories were supplemented by vis~ialgestalts
(see Appendixes 2 and 3), which form an essential part of thc Calgary
Family Assessment Model developed by Wright and Leahcy (1994). These
visual gestalts include the following:
1 . A genogranz is a family tree which is used to record information about three
generations of the family. including the name, age, and sex of each family mem-
Introduction
II
ber, major life events (both positive and negative), relationships, occupations,
health status, and so on. Based on the family systems theory of Bowen (1978;
see also McGoldrick & Gerson, 1985), the genogram is helpful in getting the
family to tell its story and in relating the family's present situation to its past
history.
2. A n econzap, modified from Hartman (1978), is a diagram of the nature and
types of connections between the family and its external context, including the
family's social circle, work, leisure activities, church, and contacts with various
health care professionals and agencies.
3. A lifeline, modified from Merriam and Clark (1991) and Burgess (1990), is a
visual aid for the chronological mapping of significant life events, such as marriage, divorce, death, and occupational or health changes, as well as behavioral
changes related to the illness.
4. Att~lchnzentpaltern diagrams, developed by Wright and Leahey (1994), map the
nature of attachments (positive or negative, strong or weak) between family
members and the changes in those patterns over time (e.g., before and after
the onset of the illness).
5. Circ~ilarpatteriz diagrams, developed by Tomm (1980), illustrate how communication patterns can affect each of the family members involved and how they
mutually affect each other.
The case histories were analyzed following the process of qualitative
analysis outlined by Lincoln and Guba (1985) and other researchers (Glaser, 1978; Glaser & Strauss, 1967; Lofland & Lofland, 1984; Miles & Huberman, 1984; Patton, 1990; Schatzman & Strauss, 1973; Strauss & Corbin,
1990). The families were compared to identify ways in which they resembled or differed from each other and to detect common patterns and
themes in their narratives of the illness experience. The analysis focused
on the naturc of, and changes in, three central dimensions of this experience: (a) the family's definition of the situation, (b) their definition of self,
including their perceptions of the elder's identity, and (c) patterns of interaction and relationships, both inside and outside of the family. Attention was also given to the temporal aspects of the illness experience.
According to Benner and Wrubel (1989), temporality does not refer to
the mere passage of time, nor to a series of events arranged historically,
but rather, "temporality means being anchored in a present made meaningful by past experiences and one's anticipated future" (p. 117).
Several steps were undertaken to validate the interpretation of the data:
(a) the use of three theoretical perspectives; (b) the use of multiple methods (interviews, interviewer observations, and observations by third
parties); (c) prolonged engagement and development of a trusting relationship with the families; and (d) negative case analysis. In addition, a
number of auditors (Lincoln & Guba, 1985) were asked to provide feedback on the research process and findings; these included colleagues from
12
One Day at a Time
both academic and clinical backgrounds. A crucial strategy to assure credibility of the findings was h o s t veriJication (Lincoln & Guba, 1985): After
the completion of data analysis, the families were contacted by mail, telephone, or in person, and invited to comment on, and validate the interpretation of, their stories. Finally, wherever possible, the findings of this
study were compared with those of other recent qualitative studies on
caregiving in families experiencing dementia. These will be referred to in
subsequent chapters.
REFERENCES
Abel, E. (1990). Informal care for the disabled elderly: A critique of recent literature. Research o n Aging, 12 (2), 139-157.
Abel, E. (1991). W h o cares for the elderly? Philadelphia: Temple University Press.
Barer, B.M., & Johnson, C.L. (1990). A critique of the family caregiving literature.
T h e Gerontologist, .70(1), 26-29.
Bell, N.W. (1991). Personal communication (August).
Benner, P., & Wrubel, J. (1 989). The primacy of curing: Stress und coping in herrltiz
and illness. Redwood City, CA: Addison Wesley.
Bernardes, J. (1993). Responsibilities in studying post modern families. Jozirnal of
Fumily Isszies, 14(1), 35-49.
Biegel, D.E., Bass, D.M., Schulz, R., & Morycz, R. (1993). Predictors of in-home
and out-of-home service use by family caregivers of Alzheimer's disease
patients. Jorirnal of Aging and Health, .5(4), 419-438.
Blishen, B., & McRoberts, H. (1976). A revised socio-economic index for occupations in Canada. Canadian Review o f Sociology and Anfhropology, 13(1),
71-79.
Borden, W., & Berlin, S. (1990). Gender, coping, and psychological well-being in
spouses of older adults with chronic dementia. Americrrn Jorirnrrl of Orthopsychiatry, 60(4), 603-6 10.
Boss, P. (1988). Fanlily stress rnrrnagenrent. Beverly Hills, CA: Sage.
Bowen, M. (1978). Furnily therupy in clinical prrrctice. New York: Aronson.
Burgess, A. (1 990). Psychiatric nzirsing in the hospital und the cornlnlinity (5th cd.).
Englewood Cliffs, NJ: Prentice-Hall.
Byrne, C., & Sebastian, L. (1994). The defining characteristics of support: Results
and research project. Jorirnul of I'sychosociul Nursing, .32(6), 33-38.
Canadian study of health and aging: Study methods and prevalence of dementia.
(1994). Canadian Medicrrl Associution Journal, 150(6), 899-913.
Cascrta, MS., Lund, D.A., Wright, S.D., & Redburn, D.E. (1987). Caregivers to
dementia patients: The utilization of community services. T l ~ eGerontologist,
27(2), 209-214.
Cavanaugh, J.C., Dunn, N., Mowery, D., Feller, C., Niederehc, G., Fruge, E., &
Volpendesta, D. (1989). Problem-solving strategies in dementia paticntcaregiver dyads. The Gerontologist, 29(2), 156-158.
Cicirelli, V.G. (1983). Adult children's attachment and helping behavior to elderly
parents: A path model. Jorirnal of Marriage crnd [he Fumily, 45(4), 815426.
Cicirelli, V.G. (1990). Family support in relation to health problcms of the elderly.
Introduction
13
In T. Brubaker (Ed.), Fanzily relirtionships in lnter life (2nd ed., pp. 212228). Newbury Park, CA: Sage.
Cohen, S., & Syme, S. (1985). Social sripport and health. Orlando, FL: Academic
Press.
Colerick, E.J., & George, L.K. (1986). Predictors of institutionalization among
caregivers of patients with Alzheimer's disease. Jo~irnalof the American
Geriatrics Society, 34(7), 493498.
Cooke, B.D., Rossman, M.M., McCubbin, H.I., & Patterson, J.M. (1988). Examining the definition and assessment of social support: A resource for individuals and families. Family Relations, 37, 211-216.
Cotrell, V., & Schulz, R. (1993). The perspective of the patient with Alzheimer's
disease: A neglected dimension of Alzheimer's disease. The Gerontologist,
33(2), 205-2 11 .
Cummings, J., & Benson, D.F. (1985). How to differentiate among dementia syndromes. Diagnosis, 7(10), 103-108.
Deimling, G. (1991). Respite use and caregiver well-being in families caring for
stable and declining AD patients. Jo~irnalof Gerontological Social Work,
18(1-21, 117-134.
Deimling, G., & Bass, D. (1986). Symptoms of mental impairment among elderly
adults and their effects on family caregivers. Jor~rnalof Gerontology, 41(6),
778-784.
Denzin, N. (1989). Interpretive interacrionisnz. Beverly Hills, CA: Sage.
Dhooper, S.A. (1991). Caregivers of Alzheimer's disease patients: A review of the
literature. Jorirnal of Gerontological Social Work, 18(1-2), 19-37.
Dillehay, R.C., & Sandys, M.R. (1990). Caregivers for Alzheimer's patients: What
we arc learning from research. Intern~rtionrrlJorirnrrl of Aging and FIz~nzan
Develolmzent, 30(4), 263-285.
Evans, D.A., Scherr, P.A., Albert, M.S., Funkenstein, H. Harris, Smith, L.A., Hebert, L.E., Wetle, T.T., Branch, L.G., Chown, M., Hennekens, C.H., & Taylor, J.O. (1990). Estimated prevalence of Alzheimer's disease in the United
States. The Mrlhunk Quirrterly, 68(2), 267-281.
Everett, B., & Nelson, A. (1991, April). We're not ccrses, crnd you're not managers.
Paper presented at the Conference on Life History Analysis, Department
of Sociology, University of Toronto, Toronto, ON, Canada.
Farran, C.J., Keane-Hagerty, E., Salloway, S., Kupferer, S., & Wilken, C. (1991).
Finding meaning: An alternative paradigm for Alzheimer's disease family
caregivers. The Gerontologist, 31(4), 483-489.
Finley, N. (1989). Theories of family labor as applied to gender differences in
caregiv~ngfor elderly parents. Jor~rnlrlof Marriage (rnd the h z i l y , 51(1).
79-86.
Fisher, L., & Lieberman, M.A. (1994). Alzheimer's disease: The impact of the
family on spouses, offspring, and inlaws. Frirnily Process, -7.7, 305-325.
Forbes, S.B. (1994). Hope: An essential human need in the elderly. Jor~rnrrlof
Gerontological Nrirsrrzg, 20(6), 5-1 0.
Fortinsky, R.H., & Hathaway, T.J. (1990). Information and service needs among
active and former family caregivers of persons w~thAlzheimer's disease.
The Gerontologist, 30(5), 640-649.
Foulke, S.R., Alford-Cooper, F., & Butler, S. (1993). Intergenerational issues in
14
One Day a t a Time
long-term planning. In B.H. Settles, R.S. Hanks, & M.B. Sussman (Eds.),
American families and the f~~tlt~lre:
Analysis of possible destinies (pp. 73-95).
New York: Haworth.
Geertz, C. (1973). "Thick" description: Toward an interpretive theory of culture.
In C. Geertz (Ed.), The interpretation of cultures (pp. 3-30). New York:
Basic Books.
George, L., & Gwyther, L. (1986). Caregiver well-being: A multidimensional examination of family caregivers of demented adults. The Gerontologist,26(3),
253-259.
methods in family
Gilgun, J.F., Daly, K., & Handel, G. (Eds.). (1992). Q~~alitative
research. Newbury Park, C A : Sage.
Gilhooly, M. (1986). Senile dementia: Factors associated with caregivers' preference for institutional care. The British Jo~~rnal
ofMedical Psychology, 59(6),
165-1 71.
Glaser, B. (1978). Theoretical sensitivity. Mill Valley, C A : The Sociology Press.
Glaser, B., & Strauss, A. (1967). Discovery of substantive theory: A basic strategy
underlying qualitative research. Anzerican Behavioral Scientist, 8, 5-12.
Globcrman, J. (1994). Balancing tension in families with Alzheimer's disease: The
self and the family. Jor~rnalof Aging Studies, 8(2), 211-232.
Gonyea, J. (1990). Alzheimer's disease support group participation and caregiver
well-being. Cli11icu1Gerontologis~,10(2), 17-34.
Gottlieb, B.H. (1989). A contextual perspective on stress in family care of the
elderly. Cunc~cfianPsychology, .?0(3), 596-606.
Gubrium, J.F. (1987). Organizational embeddedness and family life. I n T. Brubaker (Ed.), Aging, herrlth, and funzilv (pp. 23-41). Beverly Hills, CA: Sage.
Gubrium, J.F. (1988). Family responsibility and caregiving in the qualitative analysis of the Alzheimer's disease experience. Journal of Mrrrriuge and the
Funzily, 50(2), 197-207.
Gubrium, J.F. (1991). The mosaic of cure: Frail elderly und their fanzilies in the red
world. New York: Springer.
Gubrium, J.F., dt Holstein, J.A. (1990). What is family? Mountain View, CA: Mayfield.
Gubrium, J.F., & Lynott, R.J. (1987). Measurement and the interpretation of burden in the Alzheimer's disease experience. Journal of Aging Studies, l ] 265,
286.
Gubrium, J.F., & Sankar. A. (1990). The honze care e.wl,erience: Ethnogruyhy clnd
policy. Newbury Park, CA: Sage.
Haley, W.E., Brown, S.L., & Levine, E.G. (1987). Experimental evaluation of the
effectiveness of group intervention for dementia caregivcrs. The Gerontologist, 27(4), 376-382.
Hammcrsley, M . (1989). The dilenznza of yr~alitativenzetizod Herbert Rlr~n~er
~nrl
the Chicago tradition. New York: Roulledge.
Hanson, B. (1989). Definitional deficit: A model of senile dementia in context.
Fanzily Process, 28, 281-289.
Harper, S., & Lund, D.A.(1990). Wives, husbands, and daughters caring for institutionalized and non-institutionalized dementia patients: Toward a model
of caregiver burden. International Jor~rnrrlof Aging atzd I.ll~nzanDevelopnzen!, 30(4), 241-262.
Introduction
15
Harris, P.B. (1993). The misunderstood caregiver? A qualitative study of the male
caregiver of Alzheimer's disease victims. The Gerontologist, W(4), 551-556.
Hartman, A. (1978). Diagrammatic assessment of family relationships. Social Casework, 59, 465-476.
Hasselkus, B.R. (1988). Meaning in family caregiving: Perspectives on caregiver1
professional relationships. The Gerontologist, 28(5), 68&691.
Heller, K. (1990). Social and community intervention. Annual Review of Psychology, 41, 141-168.
Hirschfeld, M. (1983). Homecare versus institutionalization of the cognitively impaired. International Joz~rnalof Nursing Stz~dies,20, 23-32.
Hobfoll, S.E. (Ed.). (1990). Special issue-Predicting, activating and facilitating
social support. Journal of Social and Personal Relationships, 7(4), 435-587.
Horowitz, A. (1985). Family caregiving of the frail elderly. Annual Review of Geriatrics and Gerontology, 5, 194-246.
Imber-Black, E. (1991). The family-larger system perspective. Family Systems
Medicine, 9(4), 371-396.
Kahana, E., Biegel, D.E., & Wykle, M.L. (Eds.). (1994). Family cciregiving across
the lifespan. (Family caregiver applications series, Vol. 4). Thousand Oaks,
CA: Sage.
Kahana, E., & Young, R. (1990). Clarifying the caregiving paradigm: Challenges
for the future. In D. Biegel & A. Blum (Eds.), Aging and crrregiving: Theory, research and policy (pp. 53-75). Newbury Park, CA: Sage.
Kasl, S., & Cooper, C. (Eds.). (1987). Stress nnd health: Issues in research methodology. New York: Wiley.
Keating, N., Kerr, K., Warren, S., Grace, M., & Wertenberger, D. (1994). Who's
the family in family caregiving? Cunadiun Journal on Aging, 13(2), 268287.
Kinney, J.M., & Stephens, M.P. (1989a). Hassles and uplifts of giving care to a
family member with dementia. Psychology and Aging, 4(4), 402-408.
Kinney, J.M., & Stephens, M.P. (1989b). Caregiving hassles scale: Assessing the
daily hassles of caring for a family member with dementia. The Gerontologist, 29(3), 328-332.
Kitwood, T. (1990). The dialectics of dementia: With particular reference to AIzheimer's disease. Ageing and Society, 10, 177-196.
Kitwood, T., & Bredin, K. (1991). Person to person: A guide to the care of those
with failing mental powers. Bradford, UK: University of Bradford Dementia
Research Group.
Kuhlman, G.J., Wilson, H.S., Hutchinson, S.A., & Wallhagen, M. (1991). Alzheimer's disease and family caregiving: Critical synthesis of the literature and
research agenda. Nursing Research, 40(6), 331-337.
Land, H. (1991). The confused boundaries of community care. In G. Gabe, M.
Calman, & M. Bury (Eds.), The sociology of the heolth services (pp. 203221). London: Routledge.
Lazarsfeld, P. (1982). Qualitative analysis: Historical and critical essays. Boston:
Allyn and Bacon.
Le Navenec, C.L. (1 992). Reasons for involvement of families with relatives diagnosed with dementia: The need for a new perspective on motives for family
16
One Day at a Tirne
ccrregiving. Proceedings of the Fifth International Confcrcnce on Systcms
Scicncc in Health Care (p. 154). Prague: Omnipress.
Le Navenec, C.L. (1993). 7'he illtress crrrerr offirmi!\' .sltbsjstc~tnse~pc~rietlcitlg
lietnetltirr: Prcriottlinrrnt phrrses ernti sty1e.s o f tnut~rrging.Unpublished doctoral
dissertation. The University o f Toronto. Toronto. ON. Canada.
Lieberman, M.A.. & Kramcr, J. H. (1991). Factors affecting decisions to institutionalize demented elderly. T h e (~cr~otrtologist.
Sl(3). 371-374.
Lincoln, Y., K: Guba, E. (1985). Ntrtr~rcrlisticitrclrliry. Beverly Hills. CA: Sage.
Lindgrcn. C.L. (1993). The caregiver career. Jortrt~alo f Nrrrsirlg Sclrol~rshil).25(3).
214-219.
1,olland. J.. & Lofland, L. (1984). Ancrlyzing soci~rlsettings (2nd cd.). Belmont, CA:
Wads~vorth.
Mace, N. L. , & Rabins, P. V. (1991). Tire .i6-llorlr riay (2nd cd.). Baltimore: John
Nopkins University Press.
McGoldrick. M.. K: Gerson. R. ( 1 985). C;c~tlogrcrtnsit1 firtrzil\. er.sscsstnctl~.New York:
Norton.
Mcrriam. S.B.. K: Clark. M.C. (1991). I , ~ f ~ l i t ~ eSan
. s . Francisco: Josscy-Bass.
blilcs, M., & Hubcrman. A. (1984). Qlterlircrri~~~
drrttr trt1tr1y.si.s: A sortrcc hook ($
t~clc.tt~cthotl.~.
Beverly Hills, CA: Sage.
Miller. B. (1990). Gender differences in spouse management of the caregiver role.
In E.K. Abcl & M.K. Nelson (Eds.), Circle o,f ctrre: W o r k trtrtl itietrtity it1
~t.otnetr's1ii~c.v.Albiiny: State University of Nc\v York Press.
illillcr, D., & Goldman, L. (1989). Perception of caregivers ahout special respite
scrviccs for the elderly. 71rr ~;crot~tologi.st.
29(3). 408410.
Xlills. M.M.. K: Coleman. P.G. (1994). Sostalgic nicmorics in dementia-A case
study. It~tcrtlrrtiotrrrl.lorrrtlrrl of Aging rrtrd llrtttrrrrl I ~ C V C / O ~ ) I .?h'(3),
~ I C I I 20.3I,
219.
Mitchell, G.J. (1090). The livccl experience o l taking lifc day-by-day in latcr lifc:
Research guided by Parse's emcrjient rnctliod. Nlrrsitrg Sciolcc. Qrirrrterlj,.
.?( I ). 24--36.
Montjionicry, R., Gonyca. J., & Hooyman. N. (1985). Carcgiving and the cxpcricncc of suhjcctivc and ohjcctivc burden. I,irttlil! Rclrrtiotrs. 24. 19-26.
Motcnko. A. (1089). Tlic frustration>, gratilic:itions and well-being of dcnicntia
carcgivcl-s. 7'11e(;o.onfologist, 29(2). 166-1 72.
J,lukhcrjec. R . (1089). 7'11~tllrrrlilj. o f [if(,: I'trl~rntiot~it1 .soc.irrl rc~.sc~rrrcl~.
Ne\\.bur-h
Park, CA: Sage.
Nc!.smitli. S. >I.
(1'194). Working conditions in home care: Coniparinji thrcc group\
of workers. Ceo~trtlirrt~
.lorrrtrctl otr flgi~rg./.?(I). 169-186.
Nicdcrchc, C;.. CQ Fruge. E. (1984). Dementia and family dynamics: Clinical rcsearch izsucs. Jorrrtlrrl o f (;crirrtric I'vj.clrintr~,.17(1). 21-56.
1
Norbcck, J.. Lindsey, A,. & Carrieri. V. (1981). The clcvclopment of an instrument I
to measure social support. iYli,:sit~g Xc.sc~rrrcll..?0(5).164-260.
Nr)rhcck, .I., 12inclsey.A,. & Ciirrieri. V. (Ic)S3). Further dcvclopnicnt of the Nor- 1
beck soci;il support qucstionn:iirc: Normative dark1 and validity testing.
Nrrr..sitlg Rc.vctrrc.lr. .32( 1 ), 4-9.
0ron:i. C.J. (1990) Tcniporality and identity loss duc to Alxlicinicr's d i ~ c i l ~Soc.
citrl .Scietlcc~crt~tl,\ledicitlc. .?0( 1 1 ). 1247-1 256.
P:~scl.M.. Erdly, W.. ct! Bcckcl-, J. (1957). Sc~cialnetworks: We zct h y with (nncll
1
Introduction
17
in spite of) a little help from our friends. Journal of Personality and Social
Psychology, 53(4), 793-804.
Parks, S.H., & Pilisuk, M. (1991). Caregiver burden: Gender and psychological
costs of caregiving. American Journal of Orthopsychiatry, 61(4), 501-509.
Patton, M. (1990). Qualitative evaluation methods. (2nd ed.). Newbury Park, CA:
Sage.
Pollit, P., O'Connor, D., & Anderson, I. (1989). Mild dementia: Perceptions and
problems. Ageing and Society, 9, 261-265.
Pratt, C., Schmal, V., Wright, S., & Cleland, M. (1985). Burden and coping strategies of caregivers to Alzheimer's patients. Family Relations, 24, 27-34.
Pruchno, R.A., Michaels, J.E., & Potashnik, S.L. (1990). Predictors of institutionalization among Alzheimer's disease victims with caregiving spouses. Jozirncil of Gerontology: Social Sciences, 4.5, 5259-5266.
Qureshi, M., & Walker, A. (1989). The caring relationship: Elderly people and their
funzilies. New York: MacMillan.
Rankin, E.D., Haut, M.W., & Keefoven, R.W. (1992). Clinical assessment of family
caregivers in dementia. The Gerontologist, 32(6), 813-824.
Raveis, V., Siegel, K., & Sudit, M. (1990). Psychosocial impact of caregiving on
the caregiver: A critical review of research methodologies. In D. Biegel &
A. Blum (Eds.), Aging and caregiving: Theory, research, and policy (pp. 5375). Newbury Park, CA: Sage.
Rolland, J.S. (1987). Chronic illness and the life cycle: A conceptual framework.
Family Process, 26, 203-221.
Rubinstein, R.L. (1989). Themes in the meaning of caregiving. Journal of Aging
Studies, 3(2), 119-138.
Sallstrom, C. (1994). Spolises' experiences of living with a pcrrtner with Alzhein.ler's
disease. UmeA, Sweden: UmeA University Medical Dissertations, New Series No. 391-ISSN 0346-6612.
Schatzman, L., & Strauss, A. (1973). Field research. Englewood Cliffs, NJ: Prentice-Hall.
Schulz, R. (1990). Theoretical perspectives on caregiving: Concepts, variables and
methods. In D. Biegel & A. Blum (Eds.), Aging und caregiving: Theory,
rese~irchand policy (pp. 27-52). Newbury Park, CA: Sage.
Shapiro, E., & Tate, R.B. (1985). Predictors of long-term care facility use among
the elderly. Ccinudiun J o ~ ~ r n oa nl Aging, 4(1), 11-19.
Sheehan, N.W., & Nuttall, P. (1988). Conflict, emotion, and personal strain among
family caregivers. Fumily Relations, 37, 92-98.
Statistics Canada (1992). The Nation (Cat. No. 93-310). Ottawa: Author.
Statistics Canada (1989). Pop~ilationProjections 1990-2011 bused o n recent changes
in fertility levels and revised immigration targets (Cat. No. 91-520). Ottawa:
Author.
Stewart, M. (1993). Integrating socicrl support in nursing. Newbury Park, CA: Sage.
Strauss, A., & Corbin, J. (1990). Basics of y~iulitativeresearch. Newbury Park, CA:
Sage.
Stull, D.E., Kosloski, K., & Kercher, K. (1994). Caregiver burden and generic wellbeing: Opposite sides of the same coin? The Gerontologist, 34(1), 88-94.
Tennstedt, S.L., McKinley, J.B., & Sullivan, L.M. (1989). Informal care for frail
elders. The role of secondary caregivers. The Gerontologist, 29(5), 677-683.
18
One Day at a Time
Tomm, K. (1980). Toward a cybernetic systems approach to family therapy at the
University of Calgary. In D. Freeman (Ed.), Perspectives o n family therapy
(pp. 3-18). Vancouver: Butterworths.
Townsend, A., & Noelker, L. (1987). The impact of family relationships on perceived caregiving effectiveness. In T.H. Brubaker (Ed.), Aging, health, und
the frrnzily (pp. 80-99). Beverly Hills, CA: Sage.
Townsend, A., & Poulshock, S.W. (1986). Intergenerational perspectives on impaired elders' support networks. Jorlrnal of Gerontology, 41(1), 101-109.
Ungcrson, C. (1987). Policy is personal: Sex, gender ond informal care. London:
Tavistock.
U.S. Bureau of the Census. (1993). Statistical ubstract of the United Stutes: 199.7
(113th ed.). Washington, D.C.: Author.
Walker, A.J., Pratt, C.C., Shin, H.Y., & Jones, L.L. (1990). Motives for parental
caregiving and relationship quality. h r n i l y Relations, 39(1), 51-56.
Whitlatch, C.J., Zarit, S.H., & von Eye, A. (1991). Efficacy of interventions with
caregivers: A reanalysis. The Gerontologist, .?/(I), 9-14.
Wilson, H.S. (1989). Family caregiving for a relative with Alzheimer's dementia:
Coping with negative choices. Nzlrsing Reseurch, 38(2), 94-98.
Wright, L., & Leahey, M. (1994). Nrrrses ond fumilies (2nd ed.). Philadelphia: Davis.
Zarit. S.H., Pearlin, L.I., & Schaie, K.W. (Eds.). (1993). Coregiving systems: Informal and fornzcll helpers. Hillsdale, N J : Lawrence Erlbaum.
Zweibel, N., & Lydens, L. (1990). Incongruent perceptions of older adultlcaregiver
dyads. F ~ m i l yRelations, -79, 63-67.