:1. :.
.7. . .
‘ £1...

Warns.

v...

a? .9. .
rum;

_
t 13

a
3‘
. 1%.. Jury. in

‘nficfir:

.02..

. :1
£51.?!
. 1...:

L.
gmnmmu .3
x... .. ..H.91.n.mu..mjmmw

w 153?. ,
A1 Ill.‘

9% ..
£ Law»):
13.13:

 

A ri. n
32”».

an,

 

 

1.90? i.

\. ‘
alrIV-fiffi <93»
539:4...53’

.o. :9: 17. u}!

49%qu .

.vwfludifi 3...-
33,1thqu 12:.
"audit (..{1:.
; i. it... . ..R
40:?! 7...}... L
.r 1
:1: S,
t 1. J
, (damn.
v ”sum”
.. .i I x
I. I)

 

”its:

3003

This is to certify that the
dissertation entitled

FAMILY DECISION-MAKING: EXPERIENCES OF ADULT
SONS AND DAUGHTERS WITH ELDER CARE DECISIONS
FOR PARENTS SUFFERING FROM DEMENTIA

presented by

STEPHEN J. YANCA

has been accepted towards fulfillment
of the requirements for the

PhD. degree in Family and Child Ecology

 

 

véwmua

 

Major Professor’s Signature
A7? - A; - 0 ,1.

Date

MSU is an Affirmative Action/Equal Opportunity Institution

 

.— __ a.— r _

'5 - V1 'A

 

LIBRARY
Michigan State
University

 

 

 

PLACE IN RETURN BOX to remove this checkout from your record.
TO AVOID FINES return on or before date due.
MAY BE RECALLED with earlier due date if requested.

DATE DUE I DATE DUE DATE DUE
‘ ‘ , _ 4

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

6/01 c:/ClRC/DateDue.p65-p.15

 

r- __..._
A .-—___. _

FAMILY DECISION-MAKING:
EXPERIENCES OF ADULT SONS AND DAUGHTERS
WITH ELDER CARE DECISIONS
FOR PARENTS SUFFERING FROM DEMENTIA
By

Stephen J. Yanca

A DISSERTATION
Submitted to
Michigan State University
in partial fulfillment of the requirements
for the degree of
DOCTOR OF PHILOSOPHY
Department of Family and Child Ecology

2002

ABSTRACT
FAMILY DECISION-MAKING:
EXPERIENCES OF ADULT SONS AND DAUGHTERS
WITH ELDER CARE DECISIONS
FOR PARENTS SUFFERING FROM DEMENTIA
By

Stephen J. Yanca

Americans are living longer, leading to increasing numbers of frail elderly persons
in need of care. At the same time, families are having fewer children, so there are fewer
adult offspring available to provide family care. Accompanying these trends has been an
influx of women into the work force. The increase in work force participation by women,
who have been the traditional caregivers in the family, raises concerns about the
availability of family care. Adult sons and daughters are more likely to have to make
caregiving decisions for at least one aging parent. This study explored decisions that
families have to make in these situations and how they are able to make them
successfully. It also attempted to discover if family members use previous experiences
with family decision-making or if they develop new ways of reaching decisions together.

This is an exploratory qualitative study of experiences of adult sons and daughters
in six families who have successfully made elder care decisions together for a parent
incapacitated by dementia. The sample of seventeen participants was recruited from
families in Saginaw and Bay Counties in Michigan. An effort was made to interview
every sibling; only two from different families did not participate. Respondents were

interviewed in person, by telephone, and in one case by e-mail using an interview guide.

They were asked to describe what decisions were made, how the family made them,
important factors that influenced the decisions, and how they felt about the process.
Participants also were asked to describe how their parents made decisions, how they
make decisions in their own marriage, and how they made decisions as parents. They
were asked if they saw any influence from these situations on how they made decisions
with their siblings about elder care. Basic demographic data were collected.

These families reported using extensive communication and consensus in
reaching decisions together for their parent. They described a system of shared
responsibility and shared decision-making. Siblings who lived at a distance made
contributions such as handling finances and investments, researching the disease process
and resources, providing emotional support for the siblings on the scene, and traveling to
Michigan to assist in selecting placements and moving their parent.

Most respondents recalled a more individualized form of decision-making by their
parents and reported only some influence from these experiences on decision-making
with their adult siblings. Twelve of the seventeen respondents were married or widowed
and never divorced, and two were successfully remarried. They all described more
egalitarian marriages with decision-making being joint with discussion. They saw the
greatest similarity between these experiences and decision-making with their adult
siblings. Decision-making as parents was seen as less similar, with some participants
describing this situation as the husband deferring to his wife.

Implications for future areas of study and for the use of technology in conducting

research are discussed.

COPyright by
STEPHEN J. YANCA

2002

Dedicated to my wife and my family:
Your patience, sacrifice, and support

made all of this possible.

ACKNOWLEDGMENTS

I owe a great deal of thanks to the members of my committee who have stayed
with me over the past ten years as I completed my course work and undertook this study.
My first course was research methods with Bob Boger, whom 1 credit with giving me a
firm foundation in conducting research. Diane Levande from the School of Social Work
gave me her wisdom and insight in studying elder care and taught me about theory
construction in my profession as a social worker and a social work educator. Anne
Soderman always greeted me with a smile and was a source of support every time I met
with her either individually or in committee meetings. I cannot say enough about my
chair, Barbara Ames, who has been my mentor and my inspiration. I am thankful for her
patience and understanding as I juggled the demands of learning to be a teacher, raising
my family, and making progress toward completing a Ph.D. Her guidance helped me to
select a really wonderful group of people for my committee. I am thankful for her gentle
prodding as I plodded through years of course work and more years completing this study.
I appreciate her feedback and her candid advice about every aspect of the work that I have
done. I also want to thank Norma Bobbitt, from whom I took three of my most
fundamental courses. She inspired me to pursue a qualitative study for my dissertation,
for the richness of the data, and I am all the more enriched by that experience and by
having known her. The secretaries in the Family and Child Ecology Department, Ruth
Sedelmaier and Mary Faloon, have been helpful in bridging the distance between

Saginaw and East Lansing. They treated me as if I were a member of the faculty and

vi

made my tasks a lot easier.

I would like to thank the administration at Saginaw Valley State University where
I teach for their support. I especially want to thank my Dean, Don Bachand, whose
support and assistance was invaluable in helping me complete this project. I also want to
thank Mary Troester and Diane Boehm of the Writing Center at Saginaw Valley for
editing this manuscript.

I want to acknowledge the support that I received from my family. It is not easy
growing up with a father who is working on a Ph.D. while also working full time and
teaching overloads to pay for tuition. Catherine, Caroline, and Jonathan have been
patient and understanding. They have spurred me on when I thought about quitting
because I felt guilty about taking too much time fi'om them. They have encouraged me
with my education as I have encouraged them with their own. It is also not easy being
married to a husband who is in this circumstance. My wife and my best friend, Beverly,
has been my rock. I could not have done this without her support. Our experiences with
elder care for her parents and for my father sparked my interest in this area of study.

Finally, I want to acknowledge the contributions of the families who gave their
time and let me join their family for a brief moment. Their courage in sharing their
experiences and their even greater courage in facing these difficult circumstances is
inspirational. To a person, they expressed the hope that in some small way their
participation might help other families who are faced with making decisions for an

elderly parent who has dementia. I share this hope with them.

vii

TABLE OF CONTENTS

CHAPTER ONE
INTRODUCTION ................................................ 1
Background of the Problem .......................................... 1
Purpose of the Study ............................................... 2
Importance of the Problem ........................................... 4
Theoretical Framework ............................................. 7
Theoretical Map ............................................ 12
Evaluation of Prior Decision-Making ........................... 15
Current Context Factors ...................................... 16
Family Ecosystem Processes .................................. 21
Outcome .................................................. 24
Subsequent Decision-Making ................................. 25
Conceptual Map .................................................. 25
Definition of Terms ............................................... 27
Assumptions ..................................................... 30
Limitations ...................................................... 32
CHAPTER TWO
REVIEW OF THE LITERATURE ................................. 34
Family Decision-Making ........................................... 34
Elder Care ...................................................... 42
Intergenerational Relations ......................................... 54
Summary ....................................................... 63
CHAPTER THREE
RESEARCH DESIGN AND METHODS ............................ 65
Research Questions ............................................... 65
Descriptive Questions ....................................... 65
Interpretive Questions ....................................... 65
Theoretical Questions ....................................... 66
Methodology and Research Design ................................... 66
Theory Triangulation ........................................ 66
Method Triangulation ....................................... 67
Data Triangulation .......................................... 68
Investigator Triangulation .................................... 69
Sample ......................................................... 69
Methods of Recording Observations .................................. 72
Interview Data ................................................... 72

viii

CHAPTER FOUR

FINDINGS ..................................................... 80
Demographic Data ............................................... 81
The Adams Family ................................................ 83
Adams Family Decision-Making Experiences with Elder Care ....... 84
Decision-Making Patterns in the Adams Family ................... 85
The Baker Family ................................................. 89
Baker Family Decision-Making Experiences with Elder Care ........ 9O
Decision-Making Patterns in the Baker Family .................... 92
The Cook Family ................................................. 96
Cook Family Decision-Making Experiences with Elder Care ......... 97
Decision-Making Patterns in the Cook Family .................... 99
The Davis Family ................................................ 102
Davis Family Decision-Making Experiences with Elder Care ....... 103
Decision-Making Patterns in the Davis Family ................... 104
The Green Family ............................................... 107
Green Family Decision-Making Experiences with Elder Care ....... 109
Decision-Making Patterns in the Green Family ................... 110
The Hill Family ................................................. 1 15
Hill Family Decision-Making Experiences with Elder Care ......... 116
Decision-Making Patterns in the Hill Family .................... 117
Summary of Family Decision-Making Experiences with Elder Care ........ 122
Discussion of Decision-Making Patterns .............................. 122
Revised Conceptual Map .......................................... 125
Description of Revised Conceptual Map ........................ 126
Influence of Prior Decision-Making on Family Decision-Making . . . . 136
Summary of Findings ............................................. 138
CHAPTER FIVE
DISCUSSION ................................................. 142
Discussion of Design and Methodology .............................. 142
Discussion of Demographic Findings ................................ 145
Discussion of Descriptive Findings .................................. 149
How Selected Families Make Elder Care Decisions ............... 149
Contextual Factors That Influence Decisions .................... 156
Expected Outcomes ........................................ 157
Helpful and Difficult Circumstances ........................... 158
Discussion of Interpretive Findings .................................. 159

The Effects of Prior Decision-Making on Family Decision-Making . . . 159

The Influence of Family Decision-Making and Outcomes on Future
Decision—Making .................................... 160
Discussion of Theoretical Findings .................................. 162

ix

Indications of a Pattern for Family Decision-Making .............. 162

Reflections ..................................................... 163
Implications .................................................... 168
Conclusion ..................................................... 172
BIBLIOGRAPHY .............................................. 173
APPENDICES ................................................. 186
APPENDIX A - Interview Guide .................................. 188
APPENDIX B - Sample Letter .................................... 189
APPENDIX C - Demographic Information .......................... 190
APPENDIX D - Informed Consent ................................. 191
APPENDIX E - Confidentiality Agreement ......................... 192

LIST OF FIGURES

FIGURE 1.1: A Model of Explicit Decision-Making Showing Effects ........ ll
of Current Context Factors and Evaluation of Prior
Decision-Making Experiences, Decision-Making Processes,
Outcome, and Subsequent Decision-Making fiom
Scanzoni and Szinovacz

FIGURE 1.2: Theoretical Map of Family Decision-Making Utilizing ......... 13
a Modified Version of Scanzoni and Szinovacz’s Model
of Explicit Family Decision-Making Integrated with Concepts
of Family Ecological Theory from Bubolz and Sontag and
Components of Family Decision-Making from Paolucci, Hall,
and Axinn with Bronfenbrenner and Yanca Added

FIGURE 1.3: A Conceptual Map of Family Decision-Making for Elderly ...... 26
Parents Suffering from Dementia

FIGURE 4.1 - Patterns of Interaction for Family Decision-Making ........... 123
for Each Family

FIGURE 4.2: A Conceptual Map of Family Decision-Making for Elderly ..... 127

Parents Suffering from Dementia

FIGURE 4.3 - Revised Conceptual Map of Family Decision-Making ......... 128
for Elderly Parents Suffering from Dementia

xi

TABLE1.1:

TABLE 3.1:

TABLE 3.2:

TABLE 4.1:

TABLE 4.2:

TABLE 4.3:

TABLE 4.4:

TABLE 4.5:

TABLE 4.6:

TABLE 4.7:

TABLE 4.8:

LIST OF TABLES

Sources for Theoretical Map of Family Decision-Making ......

Utilizing a Modified Version of Scanzoni and Szinovacz's
(1980) Model of Explicit Family Decision-Making Integrated
with Family Ecological Theory from Bubolz and Sontag (1993)
and Family Decision-Making from Paolucci, Hall, and Axinn
(1977) and Systems Levels from Bronfenbrenner (1996).

Summary of Interview Questions and Coding for Descriptive . . . .

and Theoretical Research Questions

Summary of Interview Questions and Coding for Interpretive . . . .

and Theoretical Research Questions

Demographic Data for Sample ............................

A Comparison of Elements of Conceptual Map with Family . . . .

Decision-Making by the Adams Family

A Comparison of Elements of Conceptual Map with Family . . . .

Decision-Making by the Baker Family

A Comparison of Elements of Conceptual Map with Family . . . .

Decision-Making by the Cook Family

.14

76

77

82

86

93

99

A Comparison of Elements of Conceptual Map with Family . . . . 105
Decision-Making by the Davis Family

A Comparison of Elements of Conceptual Map with Family . . . . 111
Decision-Making by the Green Family

A Comparison of Elements of Conceptual Map with Family . . . . 118
Decision-Making by the Hill Family

Sources for Revised Conceptual Map of Family .............. 129

Decision-Making

xii

CHAPTER ONE

INTRODUCTION

Background of the Problem

Substantial demographic, social, and economic changes occurred during the 20th
Century. Longer life expectancy has led to increasing numbers of frail elderly persons in
need of care. The post-WWH "Baby Boom" will further inflate these numbers in the first
half of the 21 st Century. An increase in the number of frail elderly persons means
families are more likely to have to make caregiving decisions for at least one aging
member. At the same time, families are having fewer children. Thus, there are fewer
adult offspring available to provide family care. In addition, economic conditions have
changed during the transition to a global economy, and the United States has moved to a
more technological, but also service-based economy. Accompanying this transition has
been an influx of women, especially mothers, into the work force. This increase in work
force participation by women, who have been the traditional caregivers in the family,
raises concerns about the availability of family care.

The researcher’s interest in family decision-making for elderly parents began in
the early 19808 as a supervisor at a community mental health center that included an
elderly outreach program. Early involvement with elder care included coordinating and
delivering a series of training programs for family and professional caregivers. A grant
was written and funded for an adult day activity program for people with dementia. Over

the years, the researcher’s family and in-laws experienced caregiving decisions for

impaired parents.

The researcher’s involvement with the adult day activity program raised questions
about how caregiving decisions were made by families as they faced the difficulties of
caring for an impaired parent. In talking with families and with other professionals, it
was obvious that people were feeling their way through this on their own. This was
confirmed by personal experiences. Another question was what professionals might do to
facilitate successful decision-making. Exploring the literature, it seemed that little was
known about the decision-making processes that adult sons and daughters use when they
have to make these decisions. A few studies attempted to gain some insight, but appeared
to be limited by the constraints of having to collect data that could be quantified. This
resulted in the decision to use a qualitative approach for this study. It was felt that a
qualitative study might open the way to a deeper understanding of how families make
these decisions. In particular, exploring families who were successful might uncover
patterns that could provide a foundation for models that professionals could use in
working with families. It is hoped that this dissertation study will spur others to also take

up this quest.

Purpose of the Study

The purpose of this study was to better understand family decision—making by
adult siblings regarding care for elderly parents suffering from dementia. Important
aspects of the decision-making process itself were explored, since little is known about
how families arrive at the decision to use various forms of elder care. Most studies have

looked at demographics and dependency needs as factors, but have not explored the

actual process families use when making decisions about care. A few studies have begun
to examine family decision-making in elder care, but have relied on reports from
individual respondents and used quantitative methods of analysis (Pike & Bengston,
1996; Mittelman, Ferris, Shulman, Steinberg, & Levin, 1996; and Lieberman & Fisher,
1999)
This qualitative study was based on reports from most or all of the adult siblings
in each family. It sought answers to the following primary research questions:
How do selected families make decisions about finances, guardianship,
and the use of family care, home care, adult day care, adult foster
care or nursing home care for elderly parents with dementia?
How do selected families use prior decision-making experiences from
their family of origin, their marriages, and their parenting to make
decisions about elder care?
How do selected families use various decision-making procedures
(conflict, discussion, negotiation, change or consensus) in making
decisions for parents suffering from dementia?
Can a pattern of decision-making procedures be identified for selected
families that reflects a family pattern regarding family decision-
making?
Caregiving for elderly parents can take many forms, and it may not be clear how
various terms are used. For the purposes of this study, family care is considered to be
caregiving that is provided by family members either in their own home or in the home of

their parent. Home care is caregiving provided by paid caregivers in either the home of

the parent or in the home of a family member. Adult day care is a program that provides
care for impaired adults during the day at a facility. Adult foster care is a facility that is
licensed by the state to provide residential care in either a private home or in a group
home that is staffed by paid employees. Nursing homes are facilities that are licensed to
provide nursing care in larger residential settings that meet federal and state standards.
The study utilized qualitative methods to describe decision-making processes used
by adult siblings regarding elder care and the evolution of these processes in their
families. Six processes identified by Scanzoni and Szinovacz (1980) were considered,
including conflict, discussion, negotiation, power, change, and consensus. An open-
ended interview guide was used to explore family experiences in making caregiving
decisions. A qualitative approach was used to identify relationship variables and
potential decision-making models that serve as a foundation for firrther study. The
development of models to facilitate family decision-making may be possible, if successful

processes can be identified.

Importance of the Problem

Studying family decision-making regarding elder care is important for many
reasons. Adult sons and daughters often must make decisions for their parents with
dementia. There is no precedence for this in the family. It is expected that parents will
make decisions for themselves and for their children until the child is an adult and is able
to make his or her own decisions. Parents continue to make their own decisions.
However, their ability to make and carry out decisions is impaired if dementia develops.

Generally, the spouse takes on this responsibility if the parent is married. However, the

responsibility for decision-making typically falls on adult offspring, if the parent is
widowed or divorced or the spouse is incapacitated. In essence, the roles in decision-
making are altered with sons and daughters making decisions for their parent. This would
be labeled as "dysfunctional" by family practitioners if it were to occur without the
impairment of the parent, especially when the offspring are young. However, the
situation also might be labeled as "dysfunctional" if adult offspring fail to take on
responsibility for decisions when the parent is impaired, especially if they are available.
So, family members are likely to feel uncertain about how to proceed. They may not
know what is expected of them. The appropriate process for arriving at decisions may be
unclear. It appears that answers to these and other concerns are being created by families
as they go along. If successful processes can be identified, then professionals can develop
approaches that will facilitate family decision-making when a parent is unable to make
autonomous decisions.

This study explores the extent to which selected families rely on past experiences
to develop a decision-making process for an impaired parent. Adult sons and daughters
may follow established family decision-making patterns. They may act as if they were in
the parent’s position and use an approach they had observed their parents using. Thus,
the parents may have modeled certain decision-making processes as the siblings were
growing up. There may have been earlier experiences with caregiving decisions. Adult
sons and daughters may have used decision-making processes in their marriages and as
parents that were similar to what they experienced growing up. Thus, earlier decision-
making experiences may establish patterns of decision-making. On the other hand,

variation in experiences among family members may make it more difficult for adult

siblings to agree on how they will make decisions for their parents.

The types of care utilized and the timing of various forms of care are two
examples of the decisions that families may face. These decisions have important
financial implications for the family and for state and federal governments. The
escalating cost of home health care and nursing home care threatens the financial well-
being of elderly persons. Medicaid is available when assets are sufficiently depleted, but
this shifts the burden to state and federal governments, creating important implications
for public policy. Alternative forms of care such as adult day care are typically
underutilized despite the fact that they can save costs by extending the length of family
care.

Currently, family elder care is viewed as a tradition. However, until recently, the
likelihood of caring for an elderly spouse or parent was much less than it is now, due to
shorter life expectancy and larger families. Fewer parents lived long enough to need care,
and larger families meant there were more offspring to provide care. New patterns of
caregiving over the life span may be evolving from the increased use of non-family care
for children. For example, greater willingness to purchase non-family care for children
could lead future generations to make similar choices for aging family members.

The movement of women into the work force has produced greater variability in
child caregiving arrangements. Other major industrialized nations provide childcare
based on need. United States public policy has mainly left meeting the demand for
childcare to the market system. The result is a random pattern of childcare that is
available based primarily on either eligibility or parents’ income, and not on what

children or parents need. A question to be answered is whether similar random pattems

of care will emerge in the care of elderly parents. The majority of elder care is currently
provided by the family. However, this care is mainly by women in a cohort who did not
experience the same patterns of work force participation and childcare utilization as the
so called "sandwich generation” (Brody, 1990). As caregiving passes from spouses to
adult sons and daughters, greater variability in caregiving arrangements for elder care also
may take place. Families may use home care, adult day care, and adult foster care as
alternatives to nursing home care. It remains to be seen what other models of care will be
developed in the future.

Greater longevity and lower fertility have changed the structure of the family.
When life expectancy was much lower and fertility rates higher, families were more likely
to have fewer generations alive, but had greater membership in living generations.
However, during the latter part of the 20th century this changed for families in developed
countries. Cees Knipscheer (1988) describes the "verticalization" of the family in which
there are more generations living during the same period of time with fewer numbers in
each generation. This is likely to bring about radical changes in intergenerational
relations within the family and a greater likelihood that family caregiving decisions will

be needed.

Theoretical Framework

The conceptual map for this project evolved from theories by Bubolz and Sontag
(1993), Paolucci, Hall, and Axinn (1977), and Scanzoni and Szinovacz (1980). It has a
central framework of family ecological theory similar to Bubolz and Sontag (1993).

Their ecological theory was selected because it includes the family as a system and its

interaction with the environment. Decision-making is among the primary
activities/processes that take place within the family. Paolucci, Hall, and Axinn (1977)
stated that the transacting process between families and environments is one of “deciding,
acting, and reacting" (p. 2). Family ecosystem structure was conceptualized by Bubolz
and Sontag (1993) as families of diverse characteristics (structure, ethnic origin, life
stage, and socioeconomic status) with individual and family attributes (needs, values,
goals, resources, and artifacts) interacting in and with diverse environments (natural
physical-biological, human-built, and social-cultural). Family ecosystem processes
involve the transformation of matter-energy and information by engaging in the key
process of adaptation through activities and processes (decision-making, perception,
organization, communication, management, use of technology, sustenance activities, and
human development). The outcomes of these ecosystem processes occurring at the micro
and macro level affect the quality of life of humans and the quality of the environment (at
both levels), which in turn have consequences for the realization of values and
environmental goals (human betterment and stewardship and sustainability of the
environment). These outcomes provide feedback to the structural and process aspects of
the family ecosystem and influence structure and process.

In Bubolz and Sontag's (1993) description of family ecology theory, decision-
making is relegated to a similar position as several other activities/processes in the
family. In this study, however, decision-making is considered the core process in
adaptation. The other activities/processes are seen as either products of decision-making
or influencing factors. This is consistent with Bubolz and Sontag’s view that decision-

making is the central control system of family organization. Thus, for the purposes of

this study, Bubolz and Sontag's (1993) description of family ecology theory for the
process level is reformulated as follows: Families transform matter-energy and
information by engaging in the key process of adaptation through decision-making
activities/processes and other activities/processes (perception, organization,
communication, management, use of technology, sustenance activities, and human
development) interacting with decision-making.

Intergenerational family decision-making is the main focus for this study. In
particular, the decision-making process used by adult siblings regarding aging parents
was studied. The examination of family decision-making by Paolucci, Hall, and Axinn
(1977) used a family ecosystems approach that is similar to that of Bubolz and Sontag
(1993). In considering decision-making in families, Paolucci, Hall, and Axinn described
how decisions are interrelated and changing. They proposed two basic patterns in which
decisions are linked, central satellite and chain patterns. Central satellite is characterized
by a main central decision with various minor decisions radiating from the central
decision. An example of this in elder care would be an adult son or daughter making the
decision to have a widowed parent move in because of a disability (central decision).
Rearranging bedrooms, planning meals for a special diet, and arranging for participation
in a day program would be satellite decisions.

With the chain pattern of family decision-making, there is a sequence of decisions
in which each decision is dependent on those that precede it (Paolucci, Hall, & Axinn,
1977). For instance, seeking guardianship for a parent with diminished capacity requires
a series of steps with related decisions as one has evaluations completed and retains an

attorney leading up to the court date when a decision is rendered.

Scanzoni and Szinovacz (1980) explored the influence of sex role modeling on
farme decision-making. They made a convincing argument for sex role modeling as an
important factor in how families make decisions. In addition, their inclusion of context
factors, time, third parties, and placement in the life span makes their model ecological.
Their examples of hypothetical families include different influences of historical events
on each generation of the family. They also considered decisions involving marital
couples across the life span, parents and children, adult children and their aging parents,
and alternative lifestyles, family decision-making and social policy. Thus, Scanzoni and
Szinovacz include the necessary elements of both an ecological perspective and an
intergenerational approach. Their work was used as the primary decision-making model
for this project because it adds to the understanding of family decision-making.

It appears that Scanzoni and Szinovacz's model (1980) (see Figure 1.1) is a
version of the chain pattern. It is not the classic chain pattern in which a sequence of
decisions is necessary to produce a certain outcome. Instead, the model chains past,
present and subsequent decision-making. This is similar to what Paolucci, Hall, and
Axinn (1977) referred to when they describe decision-making as “a process rooted in the
past, carried on in the present, shaping the future" (p. 5). Scanzoni and Szinovacz saw
family decisions as beginning with Evaluation of Prior Decision-Making followed by
consideration of Current Context Factors. Decision-Making Processes then take place,
leading to an Outcome. Current context factors interact with prior decision-making and
influence current decision-making processes. A good fit between current and past
circumstances reinforces a similar decision process with the expectation of a similar

outcome. A poor fit between context factors or a poor outcome to prior decision-making

10

 

 

weflmzéofioofl
“concomanm

.83 .5 83 59555 as: “Hosanna Beau
wen—«2-5239 «nos—venaam .23 6332.0 .8339..— waiazéefieon— :e mooaotoanm uni-“2-57.599 no: we
net—«Egm— tea €32“..— .uoaeeO 2.2.50 he Samba «£33m wan—«Ernefioon man—am gum—Ann.— .«e .332 < . fl“ «Sufi

 

 

 

 

2:850

 

 

 

 

coaom T
couauowoz
56335
85.50
owner—U
mawcomeou

 

 

 

$532
-5865
BE we
gag—gm

 

 

 

 

5% a: as E 8“:
meme—am REP

93% 55: SEE 68%
8558355 Be: 345:
3535 3.583— oEESDS mo 09—mon—
btama ooh—8oz oBESfl. mo acumen
afiea 2cm segue .8 8&5

99. can Race. 0 a. 55.0

 

 

11

is more likely to lead to changes in the process with an expectation of a successful
outcome. Evaluation of prior decision-making, current context factors, and decision-
making process converge to form an outcome which influences Subsequent Decision-
Making.

Theoretigal Map

A comprehensive theoretical map was constructed to demonstrate how an
ecological model of family decision-making is developed by blending Bubolz and
Sontag's(l993) Family Ecosystems Processes with Scanzoni and Szinovacz's (1980)
Decision-Making Processes. Elements from Bubolz and Sontag (1993), Paolucci, Hall,
and Axinn (1977), and Bronfenbrenner (1996) were added under Current Context Factors,
Family Ecosystems Processes, and Outcome.

The theoretical map in Figure 1.2 illustrates the development of the conceptual
map for this project. Table 1.1 highlights the sources for the theoretical map. Age
Cohort and Generational Placement were added to the theoretical and conceptual maps by
this researcher under Place in the Life Span to make this an intergenerational family
decision-making model. Family of Origin was added by this researcher to Evaluation of
Prior Decision—Making to represent the influence of decision-making patterns
experienced while growing up. This is consistent with Paolucci, Hall, and Axinn’s
(1977) premise that decision-making is a learned process that is rooted in the past. In
considering these experiences, the most relevant decision-making processes are those that
were used by parents in their maniage, with their children, and with grandparents
(especially as grandparents age). Marital was added to reflect the decision-making

processes that evolved in the marriage of procreation. These processes are influenced by

12

dope: 35> .5: 88: 3:555:95 :33 GS: ::E 5:: Ail Jog—ea.— EPc wiazigmfloon mafia.”— u: 8:33:50 6::
8n: .9 £35 ”55m :5 32:5 :25 .032: .3328”: uni—am he 3:350 :33 039.9“:— wfixa—zéefioon 3:3..— zoE—nm «e
.252 8.: A. .23: Pentium 2: FREE 2 use...» .5582 a ”53:5 3:32-528: :55: E 9.2 39:28:- a: 23::

 

 

 

 

 

 

 

 

 

 

3:22 bmznmifimsm A 2:55:35:
Ewto mo 3:5“: Empakoum «58:23ch 5:53 .mo:._>:o< 85563 32.82
”Ev—:2 All. EoEEEEm me .0330 $828:on Me 3.3 EoEommSw—z 53.5 .«o €83:
-:emmmoon— Eofibtom 583m 11'! acumowgfifioo iotauamfio 603303: A _ gin—2-56309
32:53.6 2:255 .550 no :flazéofifion 55 56885 :3...— a:
:5 E 5:30 333w 5:31.»:

SESE a: .8 3:30 25. .33: .23 ,

2:330 .:ozS:oEo_QE~ Owed—:5 .826: .owSEO

 

 

 

downtowoz £23385 £23850 35:00
”mommoooihozguo/w EOE—2-5665 : :85.
5:839: mo rage: >3— 2: 5 3
8:35:85 a. Eugmustez
uselemlcmfi Saga:
Saooeum 58938”.— mafia..—

 

 

 

 

 

 

355085 3:236:00 do tonoo ow<v Sam £5 05 5 32m
Amfioamam 882 a. oxm .882 .8255 8:8: BE
35%: 8:88: 05:58: a.
dogged 03:ng $3583: .280 .mo:_a> .3823: £3on BEATS/x bash a. 3:239:
AmBSm 3:888:85 .Emto 2:5m .obdosmetom £38m €2.82
.:o_w=om $2.3:me Box 8:50 me 335 Jam .3“): 69¢ moumteogo meaEEonomaom
98330668 .5an 52:33 ._aomwo_o_m-_ao_mc3m 35:5 £:oE:o:$:m 09:55 55 85885
3%

 

 

 

 

l3

 

 

 

 

0:58.830 0 02.03330 0858.50 0.. ..
0:080:0m 553.. “3 00 0.05 .00 3:045
0.21:0 Manama

 

0|...03:|O

 

808020.60 5:5: £00300...

00:05.05 83.0500... .«0 00: 45809332
.:0000.::E.:00 6000:8030 00.50080.— ”Mg
006.000 5.3 .5258. 00000005 00:30.34
.050 a. m0mm000:m\00_._>00< :302006600

 

 

 

 

   

 

 

 

 

 

:00355035 .— 002... :05... 03. (.0 000005 00. 05 E :. 0 :m
.00»... .033. m 500.5005 0% 005.0030: 8.00.5.0. 005:.0m 030m .0330 60000032
Gram away—:5 0080000m 0E8... 000nm 5:0..— .:0_mm:005 £85300 .8580
0.005000% .0300 .0035» “:0 m 005 05 E 0005
b.3005 £000.02. $0002 ”000.550... 2.80.. a. 3% ”a3
095000.". 03.9.85 0.0.05 0.80:000060m 35:05 03M 00:00 00 00%00
280% 0.9.3.0 00:0 0.50m. 0.3250 H0.0.2.08005 =8... 3.50 3:22 .833. .83.

0.802 a. 0%. 00.5003. 0.0%:0...
.8002 .0022 .0w< atom 3.60.:

_0:3_:0.0.00m 0% .53. SESE ._00&0_0_m-_00_m.£m
3:30 Z flawfi:9:>:m 000020 5.3 50080.5

 

 

.xom Halo....lmt.|0..0..8|0:0. 20:00:03
20000,: 0:00:00 0:955

 

 

«:30203300 G 00....— ..0 :030:_:.>H|

 

 

:55. a.
00:55:35.5 50: .6020...—

 

 

0350 a 52...:

 

3.3055 0 33:08

 

 

A300 3:555:00: 50.... 0.33 «8000.3 0:: 955 ::.N< 0.... 50m £00200.— 80.: wfixazéfimuan 3.50% 0::
89.0 03.50 0.... 02...: as: :8... 3.028... 0.5.... 5.3 3.208... ”5.2.5.08: 0.5... 000%: 0.. .252

33 0 0.3.3055 0:0 33:05 a: :33?» 005002 a “:55: 3302:0300.— .mafiah .00 :02 305000.; :0: 000.58 - .4 030,—.

14

the experiences of each spouse. Parental refers to decision-making by parents for
children in the family of procreation. The addition of these elements is necessary in order
to complete the development of an intergenerational model.

The same concepts were added to Subsequent Decision-Making except that the
influence is on future decisions. This is an important distinction in that the model is
intended to capture decisions that are made in the future, including those that might be
made within the marriage of procreation, with children who are maturing, and with
parents who will eventually be aging. Quality of Life of the Family was added to
Outcome to highlight concerns family members may have about their own family’s life
situation as caregiving decisions are made.

Evaluation of Prior Decision-Making

Evaluation of prior decision-making was the starting point in using this model to
examine family caregiving decisions. The earliest decision-making processes that people
experience are in their families of origin. Later in life, as an adult, people typically make
decisions in their marriage and as parents. Modification of the various elements of
Scanzoni and Szinovacz's (1980) model is necessary to reflect how decisions are reached
by adult siblings regarding their elderly parents. For instance, this study does not focus
specifically on the effects of gender on decision-making, as Scanzoni and Szinovacz did.
Instead, it explores whether there is evidence for certain basic decision-making processes
proposed by Scanzoni and Szinovacz. This study does not include power in the same
form as Scanzoni and Szinovacz, since adult siblings generally live independently from
each other. However, evidence of the use of power in the decision-making process was

noted and discussed in the interviews, particularly as it relates to the power to make and

15

 

implement decisions. Using Scanzoni and Szinovacz's model, one would look to see how
decisions have been made in the past to see how current decisions might be made.
Current Context Factors

Current context factors represent factors that are influenced by prior decision-
making and also influence prior decision-making, family ecosystem processes, and
outcome.
Interaction with Diverse Environments. Interaction with diverse environments refers to
the environments that make up the family’s ecosystem. The natural physical-biological,
human built, and socio-cultural systems are the larger contexts in which the family
operates.
Household/Family Characteristics. Household/family characteristics include race, age
and sex which are biologically determined, but also carry some important social and
cultural implications. Bronfenbrenner (1996) felt that these were so important to process
and outcome that they should be included in every research design for the study of human
development. Ethnic origin and religion also have cultural implications. Sex and age are
important since many ethnic groups value males over females, and some value older
adults more than others. Younger children tend to have less power than adolescents, and
adults more power than minors. In addition, limitations on power and resources for
groups suffering from discrimination and oppression limit their options and ability to
influence outcomes. For example, Scanzoni and‘Szinovacz (1980) found that lower
socioeconomic status tended to limit power and resources and also increased the
likelihood of traditional sex roles in marriage.

Marital status influences who is involved in decisions and how they are made.

16

People who are single, divorced or widowed may make decisions alone or may consult
others, such as extended family members or people outside of the family. Married
couples may also consult others, but generally will rely on the processes they have
developed within the maniage. Scanzoni and Szinovacz (1980) found that cohabitating
couples tended to act as marital couples, except that the lack of a formal commitment
tended to weaken the influence of the partner.

Paolucci, Hall, and Axinn (1977) considered various family forms as a factor in
family decision-making. They identified the following forms: 1) nuclear family (first
marriage, single or dual career); 2) nuclear family (remarried, single or dual career); 3)
nuclear dyad (childless or no children at home, single or dual career); 4) nuclear dyad
(same but remarried); 5) single-parent family (career or non career); 6) three generation
family (with any variant of the above); and 7) kin network, and emerging experimental
(commune, unmarrieds, etc.). The family forms of concern in this study included all but
those under kin network and emerging experimental.

It is assumed that first marriage couples will differ in their decision-making
process from the single or remarried. Remarried couples bring a history from their earlier
marriage that may complicate the process. Failed marriages could be expected to involve
decision-making processes in which there was conflict. Stepchildren and former spouses
can affect certain types of decisions. Scanzoni and Szinovacz (1980) found differences in
power for spouses who work versus those who do not, especially for wives. This was
included under resource disparity.

It would seem that decision-making processes in three-generational families

would be influenced by several factors. For instance, the reason the three generations are

17

living together may be important. If it is a case of an impaired parent living with an adult
son or daughter with children, then there might be a decision-making process similar to
nuclear families. However, if it is an adult son or daughter (with children) living with a
parent, there might be conflicting processes due to the adult status of the son or daughter.
It is assumed that there would be differences between decision-making in which the adult
offspring is living with a biological parent versus living with an in-law. In addition, the
history of the relationship between the biological and in—law parties would be important
in a family in which the elderly parent(s) is competent, especially if it is his or her home.
The degree of gender role disparity (Scanzoni & Szinovacz, 1980) refers to the
disparity between the sexes in gender role preferences that are strongly traditional,
traditional, modern and strongly modern. The degree of traditionalism-modemism
determines how and why various decisions are made. For instance, a couple who prefer
traditional or strongly traditional gender roles will not bring up certain decisions because
they are "givens." Decisions that do arise are the husband's to make. Negotiation or
conflict over the outcome is not expected. However, the greater the disparity in gender
role preferences, the more likely that issues are raised, and reaching a decision requires
discussion, negotiation, change, conflict, and/or consensus (Scanzoni & Szinovacz,
1980). If there is an age disparity, it tends to favor the older spouse, especially the
husband. Religion or membership in certain ethnic groups can influence gender role
preferences and disparity. Some religions and cultures teach dominance of the husband,
and others are more egalitarian. If the spouses are of different religious and/or ethnic
backgrounds, there may be more of a mixture of preferences with greater gender role

disparity.

18

Individual and Famin Attributes. Individual and family attributes include needs,
artifacts, goals, values, resources, tangible resource disparity, and intangible resource
disparity. Bubolz and Sontag (1993) identify needs for having, relating, and being. The
need for having refers to having the matter-energy and information necessary to sustain
life. The need for relating refers to love, acceptance and communication. The need for
being is the need to grow and develop. Artifacts are the physical objects that families
possess. Resources are the matter-energy and information that a family has at its
disposal. Values are conceptions of what is desirable, good, right, or worthwhile. Goals
are ends that the family wishes to achieve.

Tangible resource disparity (Scanzoni & Szinovacz, 1980) is the difference in
income, education, or job status between individuals. The greater the disparity, the more
likely that the person in the superior position will be perceived as more powerful.
Intangible resources are such things as self-esteem or self-confidence. The person with
high self-esteem or self-confidence generally is perceived as more capable of making
decisions.

Values held by the family can play an important role in decisions regarding elder
care. Messages about filial responsibilities and feelings about attachment and separation
may intensify the importance of the decisions and influence the outcome. For example, if
there is an established family value such as "we all pull together,” then it is consistent for
the family to redistribute responsibilities as needed. They would feel a strong sense of
cohesion and satisfaction in "doing the right thing.” However, this value could increase
conflict if family members do not assume responsibilities. On the other hand, if

individualism has been highly valued, then decisions may be different, both in outcome

19

and effect.

Third Parties. Scanzoni and Szinovacz (1980) included kin, friends, clergy, and
counselors under third parties. Bronfenbrenner would refer to them as members of the
microsystem. Micro, messo, exo and macro systems from Bronfenbrenner (1996) are
included in this model. The micro system includes the nuclear family, grandparents,
mutual friends and neighbors, perhaps a minister, other kin and anyone else with whom
the family interacts in the immediate environment, such as peer groups, people in work or
school settings. Messo systems involve the relationships between two or more micro
systems. Each system in the micro system is an exo system for other family members
who are affected by the system, but are not direct participants. The macro system is the
larger culture or context in which the family lives. If there is a strong cultural expectation
of family care, then this will be a factor in deciding how to assist elderly parents. Various
factors at each level will influence what the family decides, how they decide it, and why
they reached a particular decision.

Place in the Life Span. Place in the life span includes ages of each generation and the
effects of historical events on each (Scanzoni & Szinovacz, 1980). This is a life course
model. Even though this is not central to Paolucci, Hall, and Axinn (197 7), it is
consistent with their model and farmly ecological theory. Age cohort and generational
placement are added by this researcher as important aspects. Age cohort captures much
of what Scanzoni and Szinovacz refer to as historical events. However, it also includes
the cumulative effect of events experienced by an age group as it passes through the life
course. The effect of an event depends on the age at which one experiences it. For

example, experiencing WWII as an adult would have been very different from

20

experiencing it as a child, especially if one were a young male in military service as
opposed to a child. For purposes of this study, generational placement refers to whether
one is a child, a grandchild, a great-grandchild, young married with children, mid-life
with older children, a grandparent, or a great-grandparent. This is a further elaboration of
Scanzoni and Szinovacz, but captures the sense of the variety of roles and experiences
that would be associated with membership in a larger extended family, especially one that

was "verticalized.”

Family Ecosystem Processes

In the theoretical map, Family Ecosystem Processes are influenced by Evaluation
of Prior Decision-Making and by Current Context Factors. In Bubolz and Sontag’s
(1993) conceptualization of family ecology theory, families “transform matter-energy and
information by engaging in the key process of adaptation” (p. 43 8). This occurs
throughout the day during the family’s entire life course. The family may decide on
different outcomes, depending on what information it has. For example, a family
unaware of available adult day care will not consider that an option. On the other hand, a
family aware of adult day care options, could mobilize its energies to make it possible for
the family member to attend. The use of adult day care would be an adaptation, but it
also might require other adaptations, such as arranging transportation.

Decision-Making Activities and Processes. Scanzoni and Szinovacz (1980) include
conflict, consensus, discussion, negotiation, power, and change as important aspects of
decision-making. Gender role disparity and tangible and intangible resource disparities

are sources of power. A multi-unit sequence of interactions characterize each of these

21

processes. Context factors, along with the response by the other person, determine which
of these are likely to result from a given sequence. This is a process-oriented model. For
instance, the process of developing a consensus can involve discussion, change, or
discovery of an immediate consensus. Conflict can lead to negotiation, change, or
discussion in the development of a consensus. Each of these depends on the response of
the other person at any given point during the sequence. For this study, a consensus was
considered to be the desired outcome of a successful family decision-making process.
Conflict is to be managed so that consensus can be achieved.

Discussion, negotiation, and change were studied as processes that families use to
manage conflict and to reach a consensus. Prior experiences, new experiences, and
information were added as aspects of these processes. Information or experiences may
affect how decisions are made. For example, a family member who lives out of state and
has not had regular contact with the parent may be reluctant to support a decision to use
day care or nursing home placement. However, his or her position may change if he or
she visits with the parent and experiences first hand the level of impairment. Experiences
that support the decision were expected to increase the likelihood that a consensus can be
reached and the same process will probably be used again. Conversely, experiences that
do not support a consensus were expected to decrease the likelihood that the same process
will be used.

Paolucci, Hall, and Axinn (1977) included style, rules, type, linkage and
implementation in their concept of family decision-making. Style refers to the mode and
time perspective of the decision-making process. Modes are hypothetical, factual and

action-suggestive. Decision-making rules are the methods by which alternatives are

22

evaluated. Paolucci, Hall, and Axinn referred to three such rules developed by Bustrillos
(1963): preference ranking, objective elimination, and immediate closure. In the first
rule, the options are rank ordered by a subjective criterion. In the second, the decision is
apparent based on limitations imposed by the environment. In immediate closure, only
one alternative is considered.

Paolucci, Hall, and Axinn (1977) defined the type of decision according to formal
properties, such as the degree of rationality and substantive characteristics. The latter
refers to the nature of the situation in terms of social, economic, or technical. Linkage is
whether the decision is a chain pattern or central satellite as described earlier.
Implementation refers to how the decision is executed.
cher Activities/Processes Interacting with Decision-Making. Bubolz and Sontag (1993)
described perception as a process that registers environmental information by the senses,
organizes it, and makes it available for use. Organization is the structure of relationships
among various elements of a whole. Communication is a process of interaction that
creates and transmits information. Management is a process that involves "the
attainment, creation, coordination, and use of resources for the meeting of goals and
realization of values" (p. 436). Use of technology refers to applying human lmowledge to
the solution of practical problems. Sustenance activities are intended to meet needs and
ensure survival. Human development “is a process of ongoing and interrelated changes
in an individual's ability to perceive, conceptualize, and act in relation to his or her
environment" (p. 437). Each of these influences decision-making in different ways.
Various combinations may be more or less important depending on the situation.

Applying these concepts from Bubolz and Sontag (1993), more options are

23

created by having more matter-energy, information, and resources. A positive outcome is
more likely if the family is able to process decisions in a manner that preserves its
relationships and well-being. On the other hand, excessive conflict may cause a
deterioration in these, resulting in greater difficulty in reaching decisions as care demands
increase. The family can mobilize itself to bring about an outcome, if it is able to discuss
options and reach a consensus. The use of preference ranking with a high degree of
rationality could improve the chances of doing this (Paolucci, Hall, & Axinn, 1977). The
decision has both economic and social aspects, so the family will need to consider such
things as role expectations and cost-benefit. The power exercised by each member is
important, but resentment could build if power is overused or used in a negative manner
(Scanzoni & Szinovacz, 1980).

Perceptions of the situation and potential options can influence the decision-
making. For instance, if the family perceives nursing homes in a negative light, it will
seek other alternatives. The organization of the family around decision-making processes
and activities determines how decisions are made and who makes them. Management
and use of technology affect the family's ability to obtain the resources necessary to reach
goals. Sustenance activities may detract from the family’s ability to mobilize its
resources. Human development is important in terms of the maturity and competence
needed to reach and implement equitable decisions (Bubolz & Sontag, 1993).

Outcome

A desired outcome for families is a positive quality of life for family members and

other humans and a quality environment GBubolz & Sontag, 1993). Human betterment,

stewardship, and sustainability are included as values that represent these outcomes.

24

Quality of life for the parent is often a primary concern in selecting from various
caregiving options. Quality of life of the family is added by this researcher to emphasize
quality of life for family members as a consideration in family decision-making.
Subsequent Decision-Making

Decision-making experiences in the family of origin, in maniage, and as a parent
were added by the researcher under Subsequent Decision-Making from Scanzoni and
Szinovacz (1980). Current decisions are likely to influence later decisions in many areas
of a person's life. Satisfaction with the process and the outcome strengthens a
relationship and increases the likelihood that difficult decisions can be reached in the
firture. Dissatisfaction weakens the relationship and increases the likelihood that future
decisions will be difficult to reach and implement. Each family member has had
experiences in the family of origin that are likely to influence subsequent decision-
making. Similarly, experiences in marriage and as a parent can influence what is

expected in future decisions.

Conceptual Map

The conceptual map for this project was derived from the theoretical fiamework
described above and was the focus of this study. (See Figure 1.3.) Evidence of conflict
and consensus were examined to see how discussion, negotiation, power, and change may
be used to reach decisions. In addition, the family members were asked to describe how
prior decision-making influenced decision-making for their elderly parent and what
decision-making process they planned to use in the future. As indicated, Current Context

Factors appear as an influence on family decision-making. However, the specific factors

25

.5552— .55 wutouam 8553 2.8.5— 3.“ wan—«Eugfiuon rash .8 a“: 3:38.80 4 - m; «Sufi

 

 

neonataxm BoZ
mooeotoaxm 8cm
EEUASSA
3E2

Ewto mo brush
wan—a2
-53qu
Eon—.035

 

 

beam .8 a: .8 3:90
. 083:5

 

 

 

 

 

“SE beam @622:

 

 

     

 

630m .omSfiU Ai

.3330? Z 6283me
6:23:00 55:00

magaziommmuon— bun—ah

 

 

 

 

620-38g
32.82

Ewto mo 3:5,.—
w:§a2-=e_m_oon
.8;— he
notes—gm

 

 

 

9.395..— 38280 «not—.0

 

 

 

26

were not the primary focus as these factors were considered to be more appropriate for
quantitative methods of study. Family members were asked about current context factors,
and these were noted and identified as variables for future study.

Prior Experiences and New Experiences were added by this researcher since they
may be prominent elements in influencing decisions made by families. They are intended
to highlight the fact that information or experiences that do not directly involve the

decision-making process may still affect how decisions are made.

Definition of Terms

1. Prior decision-making

Theoretical: Decision-making processes that were used at an earlier point in time.
(Scanzoni & Szinovacz, 1980)

Operational: Descriptions by respondents of the decision-making styles and processes
their parents used during the respondents' childhood years (family of
origin), the respondents used with their spouse during any marriage
(marital), or the respondents used with their spouse(s) in raising any
offspring or stepchildren (parental or parent-child).

2. Current contextual factors

Theoretical: Demographic and situational factors that may influence a decision (such as

 

race, gender, ethnicity, socioeconomic status, or parental impairment from
Theoretical Framework section above).
W: Any factors in the situation that are identified by respondents as having an

influence on the decision-making process and any demographic patterns

27

that are noted from the Demographic Information form in Appendix C.

3. Family decision-making

Theoretical: Decisions made by one or more related family members (Bubolz &
Sontag, 1993).

Operational: Decisions made by one or more related family members on behalf of an
elderly parent who is suffering from dementia.

4. 9mm

Theoretical: Disagreement, resistance or opposition to a suggestion, idea, or proposal
(Scanzoni & Szinovacz, 1980, p. 62).

Operational: A description by a respondent of a disagreement between one or more
adult sons or daughters, or resistance or opposition to suggestions, ideas,
proposals, options, or considerations by at least one adult son or daughter
regarding finances, guardianship, or various forms of elder care for a
parent who is suffering from dementia.

5. Oonsensus

Theoretical: The process of discovering or developing an agreement or a decision
marked by conformity among the parties involved (Scanzoni & Szinovacz,
1980,p.54)

Operational: Agreement among adult sons and daughters regarding finances,
guardianship, or various forms of elder care for their parent who is
suffering from dementia.

6. Discussion

Theoretical: Suggestions, ideas, proposals, options, or considerations exchanged

28

between two or more parties in an effort to reach a consensus or agreement
(Scanzoni & Szinovacz, 1980, p. 57).

Operational: A description by a respondent of an exchange of suggestions, ideas,
proposals, options, or considerations between two or more adult sons or
daughters in an effort to reach an agreement regarding finances,
guardianship, or various forms of elder care for their parent who is
suffering from dementia.

7. Negotiation

Theoretical: An effort to find ways to deal with or overcome resistance or opposition
by offering compromises (Scanzoni & Szinovacz, 1980, p. 63).

merational: An effort by an adult son or daughter or a third party to deal with or
overcome resistance or opposition by offering compromises regarding
finances, guardianship, or various forms of elder care for a parent who is
suffering fi'om dementia.

8. han e

Thepretigal: A modification in one’s position (Scanzoni & Szinovacz, 1980, p. 55).

Operational: A description by a respondent of a modification in position, thinking,
opinion, attitude, or belief by the respondent or other participants in the
decision-making process.

9. On come

Theoretical: "how the decisioning parties evaluate the present status of their
discussions, negotiations, or arrangements regarding a certain matter"

(Scanzoni & Szinovacz, 1980, p. 95).

29

 

 

Operational: A description by a respondent of the process and product of a decision-
making process regarding finances, guardianship, or various forms of elder
care for a parent who is suffering from dementia.

10. Subsequent decision-making

Theorptical: Decision-making styles and processes that will be used in the future
(Scanzoni & Szinovacz).

Operational: Descriptions by respondents of the decision-making styles and processes
they plan to use in the future to make decisions within their sibling group
regarding finances, guardianship, or various forms of elder care for a
parent who is suffering fiom dementia (family decision-making), decisions
in a marriage (marital), or decisions in raising any offspring or

stepchildren or with their adult offspring (parental or parent-child).

Asspmptions

Several assumptions were made about how families make elder care decisions and
about how members would respond during interviews. It was assumed that conscious and
unconscious processes are at work when decisions are reached within the farrrily. It was
assumed that family members would accurately recall conscious processes that were used
in making decisions for their parent. It also was assumed that patterns would emerge for
each family representing some of the conscious and unconscious processes. A critical
assumption was that participants would be open and honest in their responses and that
their recollection of experiences would be representations of actual events. At the very

least, the information that was gathered was treated as perceptions of the experiences that

30

were described. It was assumed that there would not be substantial differences between
respondents who were interviewed in person and those who were interviewed by
telephone. However, it was recognized that there may be some differences in the
responses given by people in face-to-face versus telephone interviews.

Triangulation and the inclusion of all or most family members in the study were
intended to overcome difficulties that might be posed by some of these assumptions. It is
more likely that accurate descriptions can be obtained if all or most of the family
members are interviewed. It was assumed that consistency among members’ descriptions
would indicate greater accuracy and a greater likelihood of open and honest responses.
On the other hand, inconsistency would indicate differences in perception that could
represent less accuracy and differences in the levels of openness. Inconsistencies between
in-person and telephone interviews may indicate less reliability for the information
obtained by one of these methods. At the very least, this would indicate difficulty in
mixing these two forms of data collection.

Families were recruited from several types of organizations. It was assumed that
this variation would not confound the findings. F arnilies were asked about their use of
various forms of care, and comparisons were made to determine any differences in how
decisions were made. Recruitment means that families were self-selected and not
randomly determined. It was assumed that self-selection would result in participant
families who were more satisfied with the decision-making process and the results as
opposed to those who were dissatisfied. This is consistent with part of the purpose of this
study, which is to identify decision-making processes that are successful and can be

duplicated.

31

 

fi ‘,‘,’:.J i1“? ’"WAV'TV '0M'l's'“1"l."~"'}""-" '
4' . n ‘ . . . -

  

' '..v-3—— . .- . .--'
v ‘ 1?“ fivw‘u-JanV-‘Tv: sign-JV '«ttw- .§!". . “.1 w " u '- r, - "

.W— mm»:

Limitations

The findings for this study are considered to be a valid indication of decision-
making processes that families can use to successfully reach decisions about elder care.
However, the findings are not considered to be exhaustive. It is recognized that the
decision-making processes that emerged may not be used by all families. It also is
recognized that other processes may be used by other families. The use of modified
methods of pattern matching, analytic induction, and grounded theory increases the extent
to which findings can be considered exhaustive for the participating families.

The sample was drawn from families who identified themselves as being
successful at reaching decisions about the care of their elderly parent. In addition, the
need to secure an agreement to participate from other siblings means that the sample was
limited to families that could be expected to be more cooperative with each other and
have fewer disagreements. It was expected that some families would have experienced
conflict earlier, but were able to manage it and develop a successful process. However,
none of the families that were recruited reported any conflict. As a result, the findings are
limited to families that are able to avoid conflict and did not include families that were
able to manage conflict that arose.

Families that participated used various forms of paid caregiving. This means
there are class limitations to this study. Families of lower socioeconomic standing do not
have the same options, if they cannot afford them or government subsidies are not
available. It was expected that most of the families would be middle-class, and the
findings are limited to middle-class families. Education and occupation were included

under demographic information and were used to determine the socioeconomic class of

32

each family.

The sample was drawn from a Midwest geographical area that is semi-rural,
suburban, and small city. Experiences of families living in large metropolitan areas or in
more rural areas were not addressed. While a spectrum of options may be available to the
population studied, it may not represent all of the options available in more populated
areas. However, availability of services in large metropolitan areas may be limited by
high demand. More rural areas may have fewer options.

Racial and ethnic diversity were not addressed. Diverse families were not
excluded. However, the small sample would preclude making substantial comparisons
among racial and ethnic populations. Ethnicity was included as demographic data and

was considered as a context factor.

33

CHAPTER TWO

REVIEW OF THE LITERATURE

The following is a selective review of the literature on family decision-making,
elder care, and intergenerational relationships. The literature on family decision-making
is somewhat limited, especially regarding decisions about caring for impaired parents. A
large volume of literature in the area of elder care is beginning to accumulate from
various disciplines. Concern about changes in demographics related to aging is driving
many researchers to consider the effects of a large elderly population on the social and
economic well-being of America and other developed countries. Concerns about

intergenerational relations are surfacing in response to these demographic changes.

Family Decision-Making

The examination of family decision-making described earlier by Paolucci, Hall,
and Axinn (1977) used a family ecosystems approach, as did Bubolz and Sontag (1993).
Paolucci, Hall, and Axinn described how decisions are interrelated and changing.
Scanzoni and Szinovacz (1980) explored the influence of sex role modeling on family
decision-making. While they did not label their model as ecological or intergenerational,
the basic elements of each of these were included.

Several studies have begun to examine how families cope with the demands of
elder care and how decisions about care are made. These studies are an important source
of support for this dissertation. Stoller, Forster, and Duniho (1992) investigated parent

care systems within sibling networks. The parents in their sample reported relatively

34

good health with few impairments, so their results are relevant for only the very early
portion of parent care. They found that geographical proximity was the most important
factor in explaining adult offspring involvement in providing assistance to parents. They
did not find support for a hypothesis that widowed parents would select opposite-sex
offspring to perform gender-linked tasks their spouse had performed. Instead, they found
some support for a preference for same-sex helpers. Their results confirmed that
daughters or other women provided more help to parents who needed routine daily
assistance and that daughters helped with a broader range of tasks.

Keith (1995) conducted a qualitative study of family caregiving systems. She
interviewed siblings regarding the division of caregiving labor in the family. Her analysis
of the data suggested three models that reflect certain values to particular families. She
found evidence for primary caregiving systems in families of all sizes. These reflected a
particularly strong affiliation between an offspring and the parent. A partnership model
was seen as requiring at least two offspring of the same gender in a family of three or
more siblings, along with a commitment to equitable sharing of responsibility and
authority. A team model was established to protect the siblings from a critical or
demanding parent. This required a larger number of siblings committed to providing care
while protecting each other. The usefulness of these models in describing decision-
making by the families in this study will be discussed in Chapter Five. Keith advocated
for less emphasis on the concept of “primary caregiver” and more assistance to families in
developing caregiving systems that will share the burden and maximize cooperative
caregiving.

There are some strong parallels between Keith’s (1995) study and this study. She

35

used a semi-structured interview guide which was designed to elicit a detailed account of
the respondent’s experience with caregiving and his or her perception of how and why the
division of labor occurred. Her topics included responsibilities and tasks of each sibling
communication, decision-making, changes over time, negotiation, conflict, conflict
management, and family relationships. The interviews were audio-taped and transcribed
for analysis. Keith’s sample was limited to elderly mothers. Living arrangements
included living in their own or an offspring’s home, a group home, or a nursing home.

Another study that provides support is by Mittehnan, Ferris, Shulman, Steinberg,
and Levin (1996). They studied family intervention to delay nursing home placement for
dementia patients. They found that a program of comprehensive support and counseling
for spouses and families can substantially increase the time that patients receive care at
home. All of the caregivers in the study were spouses. Family counseling and support
diminished the negative aspects of family caregiving while enhancing the positive,
supportive aspects. Caregivers’ expectations were more realistic and more likely to be
met either by the family or by other resources. These results support the importance of
this study by demonstrating that family care can be extended by interventions. It also
shows that cooperation within the family system is a key component. Models for
facilitating cooperative decision-making can be developed by identifying successful
family decision-making processes.

A study by Lieberman and Fisher (1999) looked at the effects of family conflict
resolution and decision-making on the provision of help to an elderly parent with
Alzheimer's disease. They employed a patient and family assessment battery with 211

families to measure variables that influence the kinds and amounts of help offered. They

36

found that a focused decision-making style and positive conflict resolution methods
resulted in families providing more help and concluded that it is very important to
consider the family system of care in disease management.

While Lieberman and Fisher’s study is similar to this dissertation study, there are
important differences. First, over half of their patients were living with their spouse or
with their spouse and an offspring. This study explores decision-making by the sibling
group because there is no spouse present. Next, Lieberman and Fisher’s dependent
variable was help provided to an elder with Alzheimer's disease. The independent
variables were decision-making techniques and style and positive conflict resolution.
Further, they surveyed one offspring from each family to assure independence among
respondents. This study includes all or most of the siblings to explore the
interdependence among family members and to identify specific decision-making
techniques and positive conflict resolution. Lieberman and Fisher used scales to measure
positive decision-making techniques, focused decision-making, and conflict resolution.
This did not provide for insight into specific processes that the families used in making
decisions. In their review of the literature, the authors noted that despite the proliferation
of studies, the vast majority of research has not addressed the family as an integrated
system responding to and being affected by the disease. Thus, in several ways,
Lieberman and Fisher’s work provides support for this dissertation study by indicating the
importance of studying the family as a system, including decision-making in elder care
situations.

A study by Smerglia and Deimling (1997) gives further support for this study.

They looked at care-related decision-making and caregiver well-being. The authors

37

found that satisfaction with decision-making is related to adaptability and lack of conflict.
They were surprised to find that the sizes of the helping and decision-making networks
were not important factors. Level of dependence and cognitive impairment of the care
receiver were also not important factors. Smerglia and Deimling speculated that the
interaction related to caregiving decisions was a part of broader family relationships and
reflected those relationships. The implications included the recommendation that
practioners shift their focus from ameliorating the effects of impairment. Instead,
practioners should work with families on enhancing their flexibility, adaptability, and
decision-making skills. The authors suggest that further research is needed to examine
the influence of flexibility and rigidity in family functioning on caregivers’ emotional
burden.

Similar to Lieberman and Fisher (1999), Smerglia and Deimling used closed
questions and scales. Their sample consisted of the impaired elderly person, the elderly
person’s spouse, and at least one proximate adult child caregiver. Thus, their study also
provides support for this study, but is fundamentally different in many of the same ways
as Lieberman and Fisher’s study.

In an earlier study, Streib, F olts, and LaGreca (1985) examined autonomy, power,
and decision-making in retirement communities. Residents were content with letting
others make decisions, and autonomy was mainly latent. Pratt, Jones, Shin, and Walker
(1989) looked at autonomy and decision-making between single older women and their
caregiving daughters. In their study, mothers were highly involved in decisions, but
caregiving daughters were influential, especially as the mother's dependence increased.

However, a consistent desire to respect autonomy was noted. Rainardy (1992) found

38

decisional control had a positive influence on health after admission to a nursing home.

Stuifburgen (1990) found that families with greater conflict perceived a greater
effect of illness on the family than those who were more cohesive. Smith, Smith, and
Toseland (1991) documented the existence of family conflict as a major complaint of
caregivers in counseling. Strawbridge and Wallhagen (1991) found 40% of offspring
caregivers reported serious conflict with other family members, and this correlated
positively with burden that was felt and poor health reported by the caregiver.

Cicirelli (1992) identified autonomy and paternalism as issues in care of the
elderly. He cited sources that support autonomy as a critical factor in maintaining the
health and well-being of frail elderly persons. Mothers in his study held a stronger belief
in paternalism than their daughters. Daughters were more reluctant to intervene in their
mothers' decisions, but mothers expected them to be involved. Cicirelli believed the
differences arose from more traditional family backgrounds for mothers and different
social trends for daughters. He thought adult children might be less ready to make
paternalistic decisions on behalf of their parents than parents are ready to submit to such
decisions. Cicirelli looked at the influence of demographic variables, family structure,
and dependency indicators. He found diverse life events impose restrictions on either
mother or daughter that seem to result in less belief in the elderly parent making
independent decisions and a greater belief in maintaining independence through shared
autonomy. He considered the greatest conceptual importance of his findings to be factors
that influence a daughter’s belief in paternalism. Patemalism was related to educational
and occupational levels (higher paternalism for less education and lower status), marital

status (unmarried were more paternalistic than married), mother's age (the older, the

39

greater the paternalism), and the number of adult sons (the more sons living, the higher
the paternalism).

Bubolz and Sontag (1993) conceptualized family decision-making as one of
several family ecosystem processes used in adaptation to transform matter-energy and
information. The outcomes of these ecosystem processes affect the quality of life of
humans and the quality of the environment, which in tum have consequences for the
realization of values and environmental goals.

Groger (1994) took a small sample of elderly black persons and examined the
process of decision-making for nursing home placement. She proposed four conceptual
models, including autonomous decisions that led to satisfaction, imposed decisions that
led to dissatisfaction, imposed decisions that were accepted (coping/satisfaction), and
joint decisions (suggestion-negotiation—satisfaction). Fisher and Lieberman (1994) found
siblings and in-laws displayed less anxiety, depression, and somatic symptoms when they
reported positive family functioning and more of these difficulties when they reported
negative family functioning. The same authors found the use of mechanisms to avoid
family conflict and the use of guilt led to lower health and well-being in offspring (Fisher
& Lieberman, 1996).

Stern, (1995) found the largest effects on decisions regarding long-term care were
from parents without a spouse and children living at a distance. Pyke and Bengston
(1996) looked at individualism and collectivism in families. They found that families
who emphasized individualism provided minimal family care and relied more on formal
care. On the other hand, collectivist families used caregiving to construct family ties. At

times, they may have provided even more care than needed. The authors predicted that

40

current trends in policy that transfer care of elderly persons from formal care to family
care would have the greatest effect on individualist families. They suggested that
demographic trends of longevity, fewer children and geographic mobility would mean
that fewer families would be able to implement and maintain collectivist caregiving
strategies. Adding to this uncertainty are other trends, such as the increase in workforce
participation by women who have been the traditional family caregivers, and the increase
in divorce, which signals instability in marital and parent-child relations. The authors
pointed out the need to examine caregiving systems.

Sorensen and Zarit (1996) conducted a study of multi-generational families and
examined preparation for caregiving. They found evidence of discussion, but little
concrete planning. Those who did plan were more satisfied than those who did not.
Bromley and Blieszner (1997) found that planning for long-term care was rare. However,
when it did occur, daughters were more likely than sons to engage in discussion with
parents. Considering, discussing, planning, and deciding appeared as sequential steps in
the process.

McAuley and Travis (1997) looked at influences on decisions leading to nursing
home care. They found research about decision makers has been rare. They also found
that professionals can have a profound effect on this decision. Gaugler, Zarit, and Pearlin
(1999) studied perceptions of family conflict and socioemotional support involved in
institutionalizing a family member. They found that husbands reported greater increases
in family conflict and wives and daughters indicated greater socioemotional support. The
authors saw the need to use interventions that account for strain and conflict in the family

and social network when facilitating adjustment to nursing home care. Cochran (1999)

41

proposed the use of the Advanced Elder Care Family Planning model to assist families in
planning ahead to reduce stress and conflict.

Mills and Wilrnouth (2002) looked at attitudes and decisions regarding life-
sustaining medical treatment for three generations, using the 1991 Southern California
Longitudinal Study of Generations. They found that the older generation considered
mental capacity, family burden, and pain as most important factors. For the middle
generation, family burden was not important, but the type of treatment was. The youngest
generation saw mental capacity and pain as important. Checkovich and Stern (2002) used
the National Long Term Care Survey to study shared caregiving responsibilities of adult
siblings. They found that women provided more care than men, distant offspring
provided less care, full-time employment reduced care, and larger families meant less
care was provided by any given sibling. A higher level of education by the parent also
was related to less care, apparently the result of greater financial resources.

In reviewing the literature, it appears that research on family decision-making
processes in nuclear families is limited. Research on family decision-making in elder
care situations is even more limited. The outcomes of family decision-making seem to be

studied more than the processes families use.

Elder Care

There has been a proliferation of studies on caregiving for the elderly in recent
years. Mentioning all of them would be well beyond the purpose and scope of this study.
Therefore, this review highlights selected research, especially literature reviews and

recent studies related to family care.

42

Brody’s prolific research has marked her as a primary expert in the area of women
and parent care. She described the aging of the family (Brody, 1966 & 1978), filial
behavior and aging (Brody, 1970), relationships between parents and children as they age
(Brody, 1979), and the "sandwiching" of the current generation in terms of child care and
elder care demands along with work (Brody, 1981, 1985, & 1990). Brody & Schoonover
(1986) found competing work roles reduced the caregiving ability of adult offspring.

Cicirelli produced several publications related to elder care, especially with regard
to attachment and to types of decision-making. He found that present helping behaviors,
attachment behaviors, and feelings of attachment by adult offspring had the strongest
influence on commitment to provide future help (Cicirelli, 1983). Cicirelli (1993) found
attachment and filial obligation were motives for caregiving behavior and were related to
the amount of help provided. Stronger attachment related to less subjective burden.
Stronger obligation related to greater burden. Cicirelli (1995) developed a measure to
assess the strength of adult daughters' attachment to their elderly mothers. The Adult
Attachment Scale (AAS) contained 16 items representing four domains: 1) seeking
security or comfort; 2) distress upon separation; 3) joy upon reunion; and 4) feelings of
love. He suggested the instrument would be valuable for testing predictions from life span
attachment theory or for relating the strength of attachment to caregiving variables.

Studies have reported that adult offspring are more likely to provide help to
parents if they are: women (Dwyer & Coward, 1992); divorced, widowed, or never
married (Stoller, 1983); the oldest offspring (Hanson, Sauer & Seelbach, 1983); live
nearby (Finley, Roberts & Banham, 1988); or are the only offspring (Coward & Dwyer,

1990). However, Dwyer, Henretta, Coward, and Barton (1992) reported that 50.7% of

43

those offspring who initially provided assistance with activities of daily living (ADLs)
and 29.9% of those providing assistance with instrumental activities of daily living
(IADLs) eventually stopped doing so in later years. The probability that an offspring
would provide care was directly related to the probability of other offspring providing
care, pointing to a greater willingness to join in if others helped. This suggests that the
ability or willingness of the offspring to provide care may change over time. They
concluded that cooperation among siblings is an important factor in the initiation and
continuation of care by offspring. Studies have indicated differences in the roles played
by adult sons and daughters in providing assistance to their parents. Daughters were
more likely to provide personal care (Horowitz, 1985; Dwyer & Coward, 1991; Chang &
White-Means, 1991). Sons were more likely to provide assistance with home repair and
finances (Stoller, 1990).

Horowitz (1985) found emotional support from siblings mediated strain felt by
caregivers. Earlier, Zarit, Reever, and Bach-Peterson (1980) obtained similar results
regarding support fiorn other relatives. On the other hand, Brody (1989) found many
caregivers (45-60%) complained that they did not receive as much help as they should
from their siblings. Matthews and Rosner (1988) reported that conflict among siblings
can reach a point where responsibilities were no longer shared.

Hagestad (1988) looked at demographic changes during this century brought on
by declining mortality and fertility. The death of a child is much less prevalent, and the
deaths of parents tend to be later and more predictable. People can expect to be parents
and grandparents for extended periods of their lives, and divorce has replaced death as a

premature disruption of marriage.

44

Brubaker (1990) did an overview of the literature on family caregiving in later
life. Studies showed that families provided extraordinary care, and many were reluctant
to use extra-familial assistance. Women were overwhelmingly represented in elder care.
However, except for age, there were fewer differences identified between husband and
wife caregivers. Both were as likely to quit paid employment, and both had similar
assistance patterns. He identified several studies that indicated wives experienced greater
subjective burden than husbands early in the caregiving experience. Employment of
daughters was a factor in the types of care, but not on the amount. There were indications
of stress on the marriage for married daughters. Brubaker stated that this underscored the
need to explore the caregiver relationship from the perspectives of the caregiver and
caregiver’s family of procreation. He raised the question of whether the apparent
differences between women's and men's contributions to caregiving would disappear as
more egalitarian daughters and sons provided care for dependent parents.

Dellmann-Jenkins, Hofer, and Chekra (1992) conducted a five—year review of the
literature on caregiving. They found considerable demands and stresses associated with
caregiving, especially since the advent of DRG's in 1983, which meant that elderly
patients were discharged "sicker and quicker.” Adult children were seen as juggling roles
of spouse, parent, and worker along with that of caregiver. Demands of parent care were
predicted to increase during the 19908 and to become long term. Formal assistance
programs were seen as responding to acute care needs rather than those that were chronic.
For the future, they looked at promising avenues that might enhance family caregiving
capacities. They discussed corporate-sponsored assistance, such as information on

services, education, flextime, and leaves. They identified an untapped resource for

45

informal respite care from university students and older adults. The authors advocated
the development of parent care systems for families and non-kin back-up systems for
those without families to share the caregiving. Finally, support services for the caregivers
and recipients and cognitive restructuring were seen as ways of reducing stress.

Mui (1995) compared adult sons and daughters regarding emotional strain.
Daughters experienced higher levels of emotional strain, especially regarding interference
of caregiving in work. The author speculated that this may be due to greater complexity
of women’s roles, particularly as this is related to household responsibilities and work.
Starrels, Ingersoll-Dayton, Dowler, and Neal (1997) found that cognitive and behavioral
impairment is more strongly linked to employed caregivers’ stress than are the parents’
physical impairments. The parents’ ability to assist in their own care reduced stress. For
both men and women, there was a strong association between caregiving tasks and time
taken off from work, which raised caregiver stress, especially for men. Neal, Ingersoll-
Dayton, and Starrels (1997) did not find any differences between employed men and
women with respect to the provision of personal/health related tasks or of care
management tasks. This is contrary to the bulk of the previous caregiver research.
However, the sample had a low average level of impairment for the elderly parent.
Consistent with prior research were findings indicating that males were less likely to
provide social/emotional support or help with household chores, except for maintenance.
Females were still more likely to be the primary caregiver, provided more tasks, and spent
more hours providing care.

Suitor and Pillemer (1994) examined the effects of caregiving on marital

satisfaction during the first year of care. Changes were related to variations in emotional

46

support or hindrance by husbands. This was affected by the husbands’ perception that
caregiving interfered with their wives ability to perform “traditional farme roles.”
Husbands’ instrumental support was not related to changes in their wives’ marital
satisfaction. This indicates that emotional support from husbands is more important than
instrumental support in the transition to caregiving. Later, these same authors looked at
sources of support and interpersonal stress over a two-year period. Sources of emotional
support came primarily from fiiends, especially those who had cared for a family member
themselves. Sources of instrumental support and interpersonal stress came from siblings
(Suitor & Pillemer, 1996). Stephens and Franks (1995) studied the spillover between
daughters’ roles as wife and caregiver. For many women, the positive and negative
spillover effects went in both directions. Negative experiences in either of these roles can
interfere with both roles. However, positive experiences in one role can enhance both
roles. In addition, positive spillover was more often related to caregiver well-being than
negative spillover. Franks and Stephens (1996) followed up this study by looking at
support provided by husbands to their caregiving wives. Receiving support from the
husband had a positive effect on marital satisfaction regardless of the amount of
caregiving stress.

Martire, Stephens, and Franks (1997) found that caregiver role adequacy was
positively related to family cohesion and marital satisfaction. Wife role adequacy had a
positive effect on family cohesion and mother role adequacy predicted less negative
affect. Voydanoff and Donnelly (1999) investigated the relationships between
psychological distress and the roles of employee, spouse, parent, and adult—child. Hours

helping and caring for parents increased distress, mainly for mothers. Role satisfaction

47

for the roles of paid worker and spouse reduced distress. Role strain associated with
these roles increased distress. The role of parent was unrelated to distress. Piercy, and
Blieszner (1999) studied the link between perceived responsibility to care for elderly
parents, other family needs, and their service utilization. Families sought assistance to
balance safety needs for the parent with caregiver needs for personal and marital
fulfillment. Stephens, Townsend and Martire (2001) examined inter-role conflict for
women. Parent care stress exerted a negative effect on well-being when it was
incompatible with the roles of mother, wife, and employee.

Brody, Litvin, Hoffman, and Kleban (1995) examined the marital status of
caregiving daughters that co-reside with dependent parents. Parent disability was not the
only reason for co-residence. Separated, divorced, and never-married caregivers often
began co-residing before their parents needed care and were more likely to mention
economic reasons. Married women fared the best with higher incomes, more helpers,
better well-being, less depression, less financial and social strain, and the greatest
satisfaction with their family lives and fiiendships.

Marks (1996) examined caregiving across the life span using the National Survey
of Families and Households 1987-88 to estimate in- and out-of-household caregiving for
persons of all ages. He found caregiving was a common experience, and child and
spousal caregiving was predominant over elder care. Married women were most likely to
be caregiving, even with aging parents, and this was associated with poorer health. He
argued for a life span perspective, given the data that caregiving was done by adults of all
ages and cuts across gender, race, and class. Ward and Spitze (1998) analyzed a sample

from the National Survey of Families and Households and reported that helping both

48

A

children and parents was relatively unusual. They concluded that high satisfaction found
in midlife marriages was maintained in spite of occasional burdens from parents or
children.

Wolf and Soldo (1994) considered allocation of time to employment and care of
elderly parents by married women. They found no evidence of reduced propensities to be
employed, or changes in work schedules, due to the provision of parental care. Gerstel
and Gallagher (1994) looked at gender, employment, and the privatization of care. They
found wives gave more care than husbands, but this can be partly due to employment.
While employed wives gave much more care than employed husbands, they gave less
than did homemakers. Those employed in positions similar to men provided care in ways
similar to men. They suggested these findings offer evidence for theories that base
women's caregiving in social structures confronted in adult life, rather than personality
formed in early life. However, studies by Moen, Robinson, and Fields (1994) and
Robison, Moen, and Dempster-McClain (1995) found no evidence that increased work
force participation by women has decreased caregiving responsibilities. Stern (1996)
concluded that the decision of offspring about where to live was made independent of
future caregiving responsibilities. Once the parent began to need care, the family decided
on arrangements while considering the location of each offspring, but not their work
responsibilities. Then the primary caregiver decided on whether to reduce work hours.

Ettner (1996) found that caregiving for parents had a large negative effect on the
labor supply of both men and women. The effects of co-residence and the effects on
women were larger. Ingersoll-Dayton, Starrels, and Dowler (1996) studied the effects of

gender and relationship status on care by employed caregivers. Women provided more

49

help than men, primarily social support and household tasks. There were no gender
differences in the amount of health care and management provided. There were no
indications of same- or cross-gender patterns of caregiving and no differences in help
provided by sons-in-law and daughters-in-law. Parents and parents-in-law received
similar amounts of care. Older women provided and received more care than older men.
Farkas and Himes (1997) found that the voluntary activities of midlife and older women
were not reduced as a result of caregiving and employment. They speculated that the
caregivers in their study may have used outside activities to relieve stress, and may have
been adept at balancing roles, or caregiving might not have been intense enough to
interfere with these activities.

Couch, Daly, and Wolf (1999) studied the allocation of time and money to older
parents. They found that the response of adult children to their parents’ circumstances
was strongly influenced by economic factors. Households with higher wages relied more
on cash transfers and (except for married women) less on time transfers. The presence of
minor children in married households increased time spent in maintaining the household,
and decreased work time and monetary transfers to parents, but not time transfers. They
also found that families who gave money also gave more time. The authors concluded
that their results suggested future increases in women’s wages relative to men’s would
increase financial contributions to parents. This could lead to greater demands for formal
caregiving if families decide to purchase care instead of providing it themselves.

Peek, Coward, and Peek (1998) found a positive relationship between parental
eXpectations of care and the actual amount of care received from their adult children.

Silverstein and Angelelli (1998) examined parental expectations of moving closer to their

50

children. Their results indicated these parents were older, female, and had at least one
offspring that was better off financially than the parent. They were more likely to expect
to move closer to a daughter than to a son and greater impairment increased this tendency.

Ganong and Coleman (1998) studied attitudes about family obligations to help
parents and stepparents. They found general agreement regarding some responsibility to
help elderly divorced parents, but no consensus on the type of help. Maintaining contact
was an important factor for both parents and stepparents, but the gender of the parent was
not. The needs of the adult children and their children were ranked higher than the
obligation to help an elderly divorced parent or stepparent. Kinship alone was not enough
to justify responsibility for care, but the absence of legal or genetic ties did not exclude
stepparents from being considered as deserving assistance. Ganong, Coleman, and
McDaniel (1998) looked at the effects of remarriage in later life on these same attitudes
toward care. They found that the obligation to parents was perceived to be greater than to
stepparents, and closeness was an important factor with regard to assisting stepparents.
There was a perception that men and women were equally obligated to provide care, but
there was no consensus regarding the types of assistance that should be provided. Stein,
Wemmerus, and Wade (1998) also studied feelings of obligation to provide care to one’s
parent in young adults and their middle-aged parents. Their results indicated that women
of both generations felt greater obligation toward their parents than did both generations
of men. Both genders felt more obligation if one parent was living than if both were
alive. The younger adults felt greater obligation to their parents than middle-aged parents
felt to their parents.

Wolf, Freedman, and Soldo (1997) studied the division of family labor among

51

siblings. Caregiving behavior was related to parents’ needs. Daughters took on more
parent care roles, but they adjusted their efforts to the needs of others, including their
children. As the efforts of siblings increased, care efforts of a given offspring decreased,
but not on an hour-for-hour basis, so overall, more care was provided. Thus, larger
families tended to provide more help. However, willingness to provide care was reduced
in proportion to the number of sisters, suggesting greater complexity in the decision-
making processes regarding care. Mathews and Heirdom (1998) looked at how sibling
groups with only brothers provided care. They found that brothers’ goals were likely to
be to maintain or reestablish parental independence, which matched parents’ wishes. The
brothers’ wives provided care, but this appeared to be tied to the quality of the
relationship with their in-laws. Carruth (1996) developed and validated a scale to
measure the dimensions of caregiver reciprocity. F our factors were found to be valid:
warmth and regard; intrinsic rewards of giving; love and affection; and balance within
family caregiving.

Crispi, Schiaffino, and Bennan (1997) studied attachment and burden in offspring
of institutionalized parents with dementia. Findings suggested that secure attachment
protected caregivers from some of the strain of caregiving. Preoccupation with the
attachment relationship contributed to burden. Parrot and Bengtson (1998) found that a
history of affection in parent-child relations increased the likelihood of exchanging help
and support in later life. A strong sense of obligation to family at an earlier time was
related to a strong sense of obligation with fathers, but not with mothers. In these
exchanges, adult children gave more than they received. Earlier conflict between parents

and adult children did not affect the exchange of help and support later in life.

52

Lach (1999) highlighted the fact that less than one in three parents discussed long
term care with their adult children. Studies indicate that most families do not deal with
this until care is required. Cooper-Kazzaz, F rielander, and Steinberg (1999) found that
the wishes of many dying patients were not known to health care providers or by the
offspring. Thus, the decisions were paternalistic, made by a surrogate, and were based on
cultural, intuitive, and emotional factors.

Pezzin and Schone (1999) found that divorce had an adverse effect on exchange at
the end of life. Ikkink, Tilburg, and Knipscheer (1999) looked at normative and structural
explanations for support exchanges. The greater the level of filial responsibility of parent
and child, the more support given to the parent. Mothers received more support as did
those who were older and in need, especially if the parent did not have a partner. Adult
children being employed or having children did not influence the support received by
parents.

Iecovich (2000) found a variety of sources of stress between patients, families,
and personnel in care settings. She suggested intervention strategies aimed at changing
attitudes and stereotypes, improving communication, and humanizing the care setting.
Piercy and Chapman (2001) studied how adult children become caregivers. Factors
included farme rules, religious training, expectations, role-modeling, and role-making.
Lieberman and Fisher (2001) studied the effects of nursing home placement on family
caregivers. They found no difference in caregiver health and well-being over time
following nursing home placement compared with those families who kept the elder at
home or in the community. They also found that female caregivers and spouses

experienced greater declines in health and well-being over time regardless of whether or

53

not nursing home placement was used.

Research on aging and on elder care is growing as the elderly populations of
developed countries grow. However, studies have focused mainly on the effects of
caregiving on families, caregivers, and receivers of care. Little has been done to study the
processes involved in providing care for elderly persons. The fact that most studies use a
quantitative approach makes it more likely researchers will be measuring outcomes rather

than looking at processes.

Intergenerational Relations

Brody and colleagues looked at work, the changing roles of women, and their
attitudes toward elder care across three generations (Brody, Johnsen, Fulcomer, & Lang,
1983; Brody, Johnsen, & Fulcomer, 1984; Brody, Kleban, Johnsen, Hoffman, &
Schoonover, 1987; Brody, Kleban, Hoffman, & Schoonover, 1988). They found women
continued to work and provided elder care with increasing stress, but the current
generation of caregivers did not want to see their daughters being burdened with their
care.

Thompson, L. and Walker, A. J. (1984) examined three generations of women and
their patterns of aid exchange and attachments. Mothers reported greater attachment than
daughters in older pairs. High reciprocity relationships showed greater attachment than
other aid patterns. Mothers and daughters perceived attachment differently in
nonreciprocal relationships, but not in relationships that were reciprocal. Patterns of
reciprocity were bolstered by a generalized moral norm, early experiences between

caregiver and child, and cumulative interaction within the pair. Since mothers and

54

daughters maintained attachment with little or imbalanced material exchange, then
research must look beyond the universal norm of reciprocity for an explanation of
relationship maintenance. The authors found it was the giving and not the receiving that
seemed to count.

Umberson (1992) examined relationships between adult children and their parents
and found divorce tended to have negative effects, and fathers affected the adult child's
well-being less than mothers. Children seemed to be less involved with their parents as
they got older. There were indications that co-residence of adult children may be
detrimental to intergenerational relations.

Hareven (1994) looked at aging and generational relations over time using a life
course perspective. She dispelled myths about co-residence and generational assistance.
She also looked at how demographic changes influenced the timing of life course
transitions and changed how aging parents were supported. Hareven found the nuclear
family has been the preferred household throughout much of American history. Families
pressured the youngest daughter to remain at home to care for aging parents or arranged
various types of boarding and lodging to support parents. Longer life expectancy made
transitions during the life course much more predictable, more individual (based on age),
and less closely synchronized with the needs of the family. Hareven saw the "empty nest"
stage as emerging only recently. An important change that occurred since WWII was an
apparent shift away from expecting support from one's children and more reliance on
governmental assistance. She saw this as an area for future research.

Brown, Subbaiah, and Sarah (1994) conducted a cross-cultural study of the

relationship between older women and their younger female kin. Their findings

55

suggested the relationships were patterned and predictable, determined by the role of
women in subsistence activities, by rules of post-marital residence, and by descent.
Fisher (1995) explored the meanings older people attached to successful aging and life
satisfaction. Five features of successful aging were identified: interactions with others, a
sense of purpose, self-acceptance, personal growth, and autonomy. He suggested
generativity contributed to successful aging and remained a vital developmental task in
later life. Starrels, Ingersoll-Dayton, Neal, and Yamada (1995) examined parent care by
employees. Several surprising results were contrary to expectations. They found that
participants with more family-friendly policies provided less care, including fewer hours
of help and less health care, social support and home maintenance. Employees that
worked longer hours provided more health care, and those that worked for larger
corporations had less reciprocal relations with their parents. The authors speculated that
employees with heavier caregiving responsibilities probably experienced more stress,
leading them to misperceive their employers policies. Another possibility was that
organizations with flexible policies may have offered more information about and access
to alternative sources of care.

Bergstrom and Nussbaum (1996) studied life-span stage, conflict styles, depth of
conflict, and conflict satisfaction. Younger adults preferred a controlling conflict style,
and older adults preferred a solution-oriented conflict style. The results indicated a
difference in conflict behaviors and satisfaction that could affect the relationship between
older adults and younger care providers. Silverstein, Chen, and Heller (1996) proposed
that moderate amounts of intergenerational social support was beneficial to the

psychological well-being of older parents. However, high levels of social support

56

reduced well-being.

Henard (1996) examined cultural aspects of aging related to gender and
intergenerational equity. He raised the question of aging as a cultural construction, since
old age is not a specific social group in some cultures. He found persistent inequities in
income, health, and social support related to age, gender, and social class. These were
due to differences in status and resources related to position in the labor market and
domestic division of labor. To cope with these issues, Henard called for aging and later
life to be considered in a life-span perspective. Possible solutions included better sharing
of jobs and economic wealth and the development of meaningful activities.

Rosenthal, Martin-Mathews, and Mathews (1996) conducted a cross-sectional
analysis of the experience of being "caught in the middle" and the extent to which adult
children in various roles provide help to their parents. They found the majority of
middle-aged children did not provide frequent help to their parents. The highest
proportion of daughters providing assistance did not have children at home any longer.
Soldo (1996) found the image of middle-aged adults balancing parent and child care
duties was not appropriate and stressed the need for panel data to evaluate reciprocity in
the form of assistance from parents and children, which would offset the volume of
claims on resources. Loomis and Booth (1995) found change in family responsibility had
little or no effect on caregivers’ well-being. They attributed this to intimacy, to
caregiving responsibility falling on those most able, and to caregivers having values that
stressed the importance of caring for others.

F ingerman (1996) explored sources of tension in the aging mother-adult daughter

relationship. Differences in the stage of adult development (developmental schism) may

57

foster tension. Those who described sources of difficulty not related to developmental
differences were more positive about their relationship. Silverstein and Bengtson (1997)
investigated the structure of intergenerational cohesion. They examined social-
psychological, structural, and transactional aspects of adult child-parent relations. They
concluded that adult intergenerational relationships in American families were diverse,
but generally possessed the potential to meet the needs of their members. Silverstein and
Parrott (1997) studied age differences in attitudes toward public support for elderly
persons and whether contact with grandparents during childhood moderated the
differences. Young adults were least supportive, but greater childhood contact with
grandparents reduced their opposition.

A number of authors examined the issue of intergenerational equity. Lee (1994)
proposed a new approach to studying population age structure, intergenerational transfer,
and wealth. His findings indicated a larger accumulation of federal transfer wealth as
opposed to debt in state/local wealth and intergenerational transfers. Sabelhouse (1994)
proposed that budget deficits were a form of intergenerational transfer and needed to be
included in reforms in the system of transferring wealth. Adams and Dominick (1995)
looked at generational equity. They saw those who raised this issue as hoping to extend
the attack on public spending for families to the more popular and better defended
entitlement programs for elderly persons, as part of a larger attempt to privatize the
welfare state. They stated that critiquing Social Security on grounds of generational
equity could be understood as part of a class war that widened the gap between rich and
poor and increased economic insecurity. Logan and Spitze (1995) explored self-interest

and altruism in intergenerational relations. Altruism rather than self-interest governed the

58

attitudes of the older generation, and this should reduce the potential conflicts over issues
of intergenerational equity. Page (1997) proposed alternative approaches toward
achieving a satisfactory combination of intergenerational efficiency and equity.

Henretta, Hill, and Li (1997) looked at the effects of past parent-to-child financial
transfers on selection of the adult child to provide assistance with basic personal care for
unmarried parents. They found substantial evidence that this played a role in determining
which child in the family would provide assistance. In contrast, McGarry and Schoeni
(1997) found intra-family transfers were compensatory, directed disproportionally to less
well-off members, but they found no evidence parents provided financial assistance to
their children in exchange for caregiving. Pezzin and Schone (1997) studied the
allocation of resources in intergenerational households. The share of income controlled
by the adult child had a positive effect on the household's demand for prescription drugs
for the parent. Home ownership increased the child's time to market, and resource control
improved labor supply and informal care. This was seen as having implications for
designing and implementing family long-term-care policies.

Coleman, Ganong, and Cable (1997) examined perceptions of women's
intergenerational family obligations to provide support before and afier divorce and
remaniage. They found a sense of obligation to assist those in need, but it was
conditional. The obligation of older generations toward younger was stronger, as was
obligation to biological kin over in-laws. Perceived obligations toward step-
grandchildren were considerably weaker than toward grandchildren.

Piercy (1998) looked at the role of responsibility in family caregiving and the

meaning of familial responsibility. This frequently encompassed shared responsibility

59

among several family members, including contributions from adult grandchildren.

Shared responsibility was multi-generational and included feelings of responsibility
toward other family members. Respect for autonomy was reported by all three
generations. Caregiving involved more than hands-on tasks and included
"socioemotional aid," which she considered a critical component. Goldscheider and
Lawton (1998) found several factors that influenced support for intergenerational co-
residence with aged parents, including having lived with parents and grandparents, having
many siblings, and espousing traditional roles for women. Income had no effect, but
educational level had a negative effect with a college education related to less support.

Hirshom (1998-99) identified intergenerational issues and various responses in
terms of intergenerational programs. Henkin and Kingson (1998-99) proposed a wide
range of intergenerational programs for the next century. Schorr (1998-99) outlined
family patterns of intergenerational supports. He pointed out that arrangements between
the elderly and their families are complex in terms of economic exchanges and services.
He saw more affluent families as being more likely to live apart and lower income
families as more likely to live together. He proposed modifying the Social Security
system to provide more support for independent living for the elderly.

Allen, Blieszner, Roberto, F amsworth, and Wilcox (1999) found that nearly two-
thirds of their small sample of older adults had lived the conventional pattern of intact
marriage, raising children to adulthood. However, less than one-fourth of their
participants reported that their children had lived the conventional pattern. Over three-
fourths experienced pluralism in family structure, including divorce, remarriage, single-

parenthood, non-marital parenthood, and long-term cohabitation. They were surprised to

60

find that a third of the older adults also had experienced such pluralism. The authors
suggested the need to update information about the changing family structures of older
adults and their offspring.

Sheehan and Donorfio (1999) looked at the “invisible” dimensions of filial
caregiving, the impact on the mother-daughter relationship. This included the “cognitive,
motivational, and interpersonal components of the meaning systems that mothers and
daughters employ to make sense out of their caregiving relationship.” The authors
contrasted this with most studies that focused on tasks and burden. They found four
themes that emerged in their qualitative study. The first was the development of
relational tolerance linked to knowledge of the other and the time-limited nature of the
relationship. Both mother and daughter saw more tactfulness in their interactions. They
had reworked their relationship, accepting each other as adults with imperfections. The
second theme associated caregiving with the opportunity to repay the mother for previous
help, such as child-rearing and care when sick. The third theme was the impact of
caregiving on age awareness and fears of aging. The final theme was the fact that
caregiving took place in a broader family context with a hierarchy of familial
responsibility. The authors called for greater sensitivity to the range of experiences,
altitudes and emotions in the caregiving relationship.

Pyke (1999) examined the power and emotional dynamics between older parents
and adult children. She found that older parents had more power in individualist families
than in collectivist families that provided higher levels of care. She saw this as indicating
a trade-off between power and care. The data also suggested that when parents do not

reciprocate with deference, relations become strained and offspring are likely to set limits

61

on their caregiving. Pyke suggested that exchange principles and power processes need
to be considered in studying caregiving along with values of filial piety and obligation.

Bengtson (2001) proposed that multi—generational relations will be more
important in this century because of the demographic changes of population aging, the
growing importance of grandparents and other kin, and resilience of intergenerational
solidarity. Fingerman (2001) suggested that a positive relationship between older parents
and adult offspring can meet older adults’ need for intimacy when they do not have a
spouse or romantic partner. She recommended that clinicians work with older parents
and adult children to achieve this. She saw the greatest barriers to intimacy in situations
in which there were feelings of being criticized or judged, rather than being accepted by
the other party.

Sherrell, Buckwalter, and Morhardt (2001) proposed looking at caregiving as a
midlife developmental task. They saw this as a growth process in which one mourns the
old and familiar before moving on to the next stage of life. They identified midlife
challenges as “(1) contributing to the welfare of society, (2) developing a sense of
generativity, (3) preserving values and ideals that one wants to pass on to firture
generations, and (4) accepting one’s own mortality.” Changes in health status and
becoming a caregiver were seen as external forces that influence the tasks and crises of
midlife. The authors suggested that caregiving for parents can enhance the growth
potential for this stage of life.

The literature on intergenerational relations is emerging. For families with aging
members, this is focused on caregiving relationships and on issues of resource equity and

intergenerational transfers. There is a mixture of positive and negative findings in these

62

areas. These differences may represent a wide variety of experiences by families. The

one universal finding seems to be the need for further study.

annular!

The literature in the areas of elder care and intergenerational relations has
increased a great deal over the last two decades. This is especially true for elder care.
The literature on family decision-making is much less prolific. Research on elder care
appears to be concentrated on quantitative studies that look at product rather than process.
The focus is mainly on the effects of caregiving on caregivers, care receivers, and
families. Research on intergenerational relations is emerging and reflects a more
descriptive approach that focuses on intergenerational programming and the potential for
conflict over intergenerational transfers.

There is some movement toward examining family decision-making regarding
elder care. Several studies were identified under family decision-making that provide
support for this study. These studies are important to this study in two distinctly different
ways. First, they support the need for further study by pointing out in literature reviews
the lack of research in this area. These studies generally conclude that further research is
needed to increase knowledge about family elder care decisions as the population ages in
the United States and other developed countries. Secondly, these studies support the need
for this study in indirect ways. Since little is known about how families go about making
these decisions, the ability to design studies and construct hypotheses for testing seems
limited. Qualitative studies of family decision-making for impaired parents can be used

to identify processes that families use. This lays the groundwork for further study for

63

both quantitative and qualitative researchers.

64

CHAPTER THREE

RESEARCH DESIGN AND METHODS

Research Questions

The research questions for this study included the four primary research questions
identified in Chapter 1 along with related questions. Research questions were designed to
be descriptive and exploratory. They are categorized as descriptive, interpretive, and
theoretical.

Descriptive Questions:

How do selected families make decisions about finances, guardianship, and the
use of family care, home care, adult day care, adult foster care, or nursing
home care for elderly parents with dementia?

Who participates? Who does not?
What procedures or processes are used?

How are conflicts or disagreements managed?

What are the important contextual factors that influence the decisions?

What are the expected outcomes?

What helps the family to reach the decision? What makes it more difficult?

Inteppretive Questions:

How do selected families use prior decision-making experiences in the family of
origin, marriages, and parenting to make decisions about elder care?

How do selected families see the current processes and outcome as influencing

future decision-making as the parent continues to age?

65

 

I21

[#71

Theoretical Questions:

How do selected families use various decision-making procedures (conflict,
discussion, negotiation, change, power, or consensus) in making decisions
for parents suffering from dementia?

Can a pattern of decision-making procedures be identified for selected families

that reflects a family pattern regarding family decision-making?

Methodolpgy and Research Design

This was a triangulated qualitative study that included theory, method, and data
triangulations. Denzin (1978) described multiple triangulations of these forms along with
investigator triangulation as generating a reliable and valid set of data. Patton (1990) saw
triangulation as the ideal way to strengthen a qualitative study. It is especially valuable in
overcoming errors linked to any single method of study.

Theory Triangplation

Theory triangulation adds to the rigor of a study (Patton 1990). There is greater
confidence in the data, the analysis, and the findings of a study when they support an
existing theory, since the study becomes a form of replication. Ifmore than one theory is
supported, then the confidence in the data, the analysis, and the findings is increased
provided the theories are compatible, or at the very least, do not inherently conflict with
each other. The theories used to construct the conceptual map for this study were
derived from Bubolz and Sontag (1993), Paolucci, Hall, and Axinn, (1977), and Scanzoni
and Szinovacz (1980). These theories seem quite compatible and for the most part were

either additive or redundant. The data and findings were compared with the conceptual

66

m:

11):

1h!

map to determine if the map was supported. In addition, an analysis of various aspects of
the conceptual map represented by these theories (see Table 1.1, page 14) is included in
the findings.

Method Triangplation

Denzin (1978) discussed the need to use multiple methods of data collection in
order to overcome the shortcomings of each. The data collected for this study were from
in-depth interviews. F ace-to-face and telephone interviews and an interview by e-mail
were used as three methods of data collection to reduce some of the shortcomings of
using only one method for in-depth interviews.

Denzin (1978) described four sources of invalidity in the interview. These include
self-presentation by the interviewer in the interviewers’ role, the relationship between
interviewer and subject, the situation, and the act of observing. The best way to
overcome these is to include a second method of collecting data. The use of face-to-face
and telephone interviews changed the context of the interview situation itself, thereby
changing the self-presentation of the interviewer, the relationship between interviewer
and subject, and the observations that can be made. The use of an interview by e-mail
introduced a third method of data collection.

In addition to triangulation of data collection methods, Patton (1990) described
mixed methodological strategies as a form of triangulation. This means borrowing and
mixing parts fi'om pure methodological approaches by mixing measurement, design, and
analysis. This study includes variations of pattern matching, analytic induction, and
grounded theory. Gilgun (1992) saw these as leading to “compellingly thick

descriptions.” Pattern matching and analytic induction use a conceptual model based on

67

previous research and theory. Pattern matching uses standardized methods for data
collection, and the model is not changed until data analysis is completed. In analytic
induction, the method of data collection is not standardized, but changes with variations
in the data. Patterns are used to change the conceptual map as these emerge. For this
study, a combination of pattern matching and analytic induction were used. Data were
collected using a semi-structured interview guide. This allowed for a conversational style
of interviewing rather than a rigid structure. Follow-up questions were asked based on
participant responses. Afler the first interview, two questions were asked in subsequent
interviews that added to the study. Participants were asked why they thought their family
was able to reach decisions successfully and what they would recommend to other
families who were facing these decisions. Thus, an analytic induction method was used
to allow latitude in using the interview guide and in adding two questions. Pattern
matching was used to identify patterns that reflected the original conceptual map and to
construct a revised conceptual map after the data was analyzed.

Grounded theory can be used to generate new theory or to confirm existing theory.
In the latter case, the findings are compared with existing theory after the data are
collected and analyzed (Gilgun, 1992). In this study, this method was used by analyzing
the extent to which the original conceptual map was supported, thereby supporting
elements of one or more of the theories upon which the conceptual map was based.
Data Triangulation

Denzin (1978) described data triangulation in terms of gathering data from
different data sources. This study did not have a pure form of data triangulation because

it did not seek data from greatly dissimilar groups. However, data were collected from

68

several families who have had different experiences with elder care. F urtherrnore, the
inclusion of more than one member of each family in this study created multiple sources
of data within each family. This was intended to provide a more accurate and deeper
understanding of the processes used to arrive at various decisions about elder care. In the
study by Lieberman and Fisher (1999) cited earlier, only one respondent was used for
each family. The authors cited other studies that indicate a sufficient level of confidence
that single respondents will reflect family responses. The fact that their sample was large
and the questions were closed or scaled allowed for statistical analysis to control for this
to some extent. In this dissertation study, validation of the data was increased by using
multiple sources. In addition, the richness of the data was increased by the inclusion of
multiple perspectives.
Investigator Triangplation

Investigator triangulation is used to control for investigator bias in collecting and
interpreting data. Generally this is accomplished by having multiple investigators
involved in data collection and/or data analysis. Triangulation also can be accomplished
by having participants verify the accuracy of the data (Patton, 1990). It was originally
planned that participants would be re-contacted to verify the accuracy of the data, but
time constraints did not allow for this to be included. However, the inclusion of multiple
members from the same family and the consistency of responses among members reduces

the shortcomings of not including this form of triangulation.

Sam le

The sample for this study consisted of adult sons and daughters who have made

69

decisions for an elderly parent with dementia and felt that they were able to develop a
successful family decision-making process. Successful families were studied to
determine how they were able to reach agreement and whether they used prior
experiences in doing so. The primary decisions studied included finances, placement in
residential or adult day care, and various decisions involved in providing elder care for a
parent with dementia. The sample was drawn from current and former users of adult day
care and adult foster care (AFC) recruited through two human service agencies in
Saginaw and Bay Counties in Michigan. While the experiences of families from different
providers will vary, it was necessary to allow for collecting data from more than one
provider in order to ensure a large enough sample for the study. The sample was drawn
from an adult day activity program and from two AFC facilities that are owned and
operated by a national chain. Both facilities are licensed for 24 beds and are staffed by
employees. The adult day activity program and one AFC are in Bay County and the other
AFC is in Saginaw County.

Recruitment began in June of 2001 after approval was received from the
University Committee on Research Involving Human Subjects (U CRIHS). The first
effort involved inserting copies of a recruitment letter (see Appendix B) in a newsletter
for current and former families of residents at the AFC in Saginaw County. Three
families volunteered and interviews began in July. A second recruitment was undertaken
in July, involving families of participants at the adult day activity program in Bay County.
Recruitment letters were inserted in a mailing from the program to families. This yielded
two families. A third recruitment took place in August. A recruitment letter was inserted

in a newsletter for families involved with the AFC in Bay County and the sixth family

70

was recruited.

In-person and telephone interviews were not completed until November. The
delay was caused mainly by the events of September 11, 2001. It was felt that scheduling
interviews immediately after this tragedy was inappropriate. In addition, the emotional
reactions of participants might create some difficulty with collecting accurate data. In
October, an effort was made to schedule the remaining interviews, but people were still
reluctant to do so. After waiting two more weeks, the remaining participants were
contacted, and the interviews were completed in November, except for a family member
living in Sicily. Her employment is connected with the military, and she was not able to
find time to complete the interview form until February of 2002.

It is possible that the size of the sibling group will produce variation in the
decision-making process. To study this, the ideal sample was considered to be two
families with two members, two with three members, and two with four or more
members. The actual sample came very close to this. There was one family with two
members, three with three members, and two with four members. In one of the families
with four members, a sibling excluded himself from participating in decisions about the
parent, and he was not included in the study. In the other family with four members, one
member agreed to participate, but later declined to be interviewed, saying that he did not
think he could add anything new to what his siblings had to say. Thus, the actual sample
was seventeen family members from six families. It took three recruitrnents to obtain this

sample. It was decided that the sample was a close enough fit with the ideal sample.

71

Methods of Recording Observations

The primary method used for recording observations was self-report by family
members. A semi-structured interview guide was used with each family member (see
Appendix A). Interviews were audio-taped with the permission of the participants and
later transcribed. (See Appendix E for Confidentiality Agreement.) The first interview
for each family was with the member who had made the initial contact. This person was
considered the primary respondent. Subsequent interviews with other family members
were focused on the family elder care decisions described by the primary respondents.
Similarly, the interview by e-mail was preforrnatted using responses fiom the primary
informant, so that the family member could describe various decisions that were made for

her father.

Interview Data

Seventeen members of six families were interviewed primarily in person and by
telephone, and one member was interviewed by e-mail. Telephone interviewing was
necessary because all but one family had members who had moved to other parts of the
country. Without telephone interviews, either some family members would not be
interviewed or the number of families available to participate would not be sufficient.
Ten members were interviewed in person. Six were interviewed by telephone. A local
family member paved the way for telephone interviews by contacting other family
members ahead of time. This alleviated much of the resistance or limitations associated
with telephone interviewing. Family members were contacted, and informed consent was

obtained (see Appendix D). The interview by e-mail was added at the request of a family

72

member who was living in Sicily, but wanted to participate. This had the added
advantage of offering an opportunity to compare this method with in-person and
telephone interviews.

The primary respondent was asked to talk with his or her siblings to find out if
they would be interested in participating in the study. The interviews with the primary
respondents were used to gather detailed information about their parents, their care needs,
and decisions that were made by the families. The portion of the interviews with other
siblings that covered family elder care decision-making was tailored to cover the
situations and the decisions described by the primary respondent. Thus, a portion of the
interviews with siblings was used as a form of validation of the information provided by
the primary respondent. Siblings were asked about their own experiences with family
decision-making for their parent. They also were asked about influences from prior
decision-making experiences with their parents and with their spouses.

Basic demographic data were gathered before each interview (see Appendix C).
Participants were asked the month and year of their birth and their marital status. They
were asked to identify their occupation and that of their spouse along with their highest
level of education. This information was used to determine socioeconomic status.
Respondents were asked to estimate the number of hours worked during a typical week
for themselves and their spouse. Participants were also asked about how many children
they have and their ages. This information was used as an indication of potential time
available for caregiving. Data were gathered regarding ethnicity and religious affiliation.

In addition to gathering basic demographic information, data were gathered at the

beginning of each interview regarding the caregiving situation (see Appendix A).

73

Participants were asked about the age and diagnosis of the parent and how the diagnosis
was made. They were asked about the kinds of assistance their parent needed, how long
these were needed, and how long the family had to make decisions for the parent.
Respondents described assistance they had given since the parent began suffering from
dementia and assistance they gave during the last six months. Data were gathered about
the distance family members lived from the parent at the time elder care began and
currently. Participants were asked to describe changes they made in living arrangements
and work as a result of their parent’s illness.

The interview guide (Appendix A) was designed to gather data for each research
question. It explored various decisions that families might need to make as their parent’s
condition progressed. Decisions about finances, guardianship, and various forms of elder
care were included in the initial guide. Decisions about selling the family home, medical
needs, and resuscitation were discussed with some families when these issues were
uncovered in the interview with the primary respondent. Family members were asked to
describe these arrangements and various aspects of the decision-making process. They
were asked about agreements and disagreements, factors that influenced each decision,
the desired outcome, what helped them make the decision and what made it more
difficult, and their feelings about the decision and how it was reached.

In the second phase of the interview, participants were asked to describe decision-
making by their parents, decision-making in their maniage, and decision-making for their
children. They were asked if they saw any influence these might have had on how they
made decisions with their siblings and how their experience might influence future

decision-making.

74

The interviews were transcribed on diskettes. Content analysis was used to
analyze the interview data. First, the interview guide was used as a format for compiling
data for each family. Sets of questions from the guide were separated, and the responses
of each family member were listed under each set. These were analyzed and coded.
Similarities and differences were noted. The results were displayed in tables for each
family. Tables 3.1 and 3.2 show the relationship between research questions, interview
questions, and coding that was used to summarize responses to the interview questions.

Participants’ responses were analyzed for evidence of family decision-making
processes, including conflict, discussion, negotiation, consensus, power, and change
(Scanzoni & Szinovacz ,1980). Responses that reflected communication, discussion, or
“tal ” were coded as discussion. Disagreement was coded as conflict. Compromise,
“give and take,” or similar descriptions were coded as negotiation. Agreement was coded
as consensus. Power reflects who had power of attorney and how that person exercised
that power. Changing one’s mind, position, feeling, behavior, or opinion were coded as
change.

Shared power and shared responsibility were added to reflect descriptions of their
situations given by respondents. Shared power represents siblings with joint power of
attorney or those who described sharing power among siblings. Shared responsibility was
used to code situations in which each sibling made a contribution to the caregiving by
taking on roles or completing tasks related to the elder care situation. These included
family care, arranging appointments and accompanying the parent, participating in
arranging residential care, managing financial affairs and investments, researching

dementia and community resources, providing emotional support to other siblings, and

75

Table 3.1 - Summary of Interview Questions and Coding for Descriptive and Theoretical

Research Questions

 

 

 

 

 

 

Research Questions Interview Questions Coding

W (What kind of decisions has your ~Conflict

How do selected Emilies Emily had to make? Has your Emily Discussion

make decisions about had to make decisions about finances? -Negotiation

flnances, guardianship, Have you had to decide about -Change

and the use of Emily care, guardianship? Has your Emily used -Consensus

home care, adult day care, Emily care, in borne (are, adult day -Shared power

adult foster care or care, adult foster care, or urn-sing -Shared responsibility

nursing home we for home care? Please describe these

elderly parents with arrangements.)

dementia? -How did your Emily go about .

-Who participates? Who making this decision? Please describe

does not? the steps that took place.

-What procedures or Describe any assistance you received

processes are used? . from Emily members, professionals,

Theoretical @estipp: medical personnel, stafl; etc.

-How do selected Emilies -Who brought it up? Who

use various decision participated? Who did not?

making procedures in -How did you reach an agreement?

making decisions for -Did any Emily members seem to have

parents sufl'ering from more influence on the final decision?

dementia? Who? Why did it seem that they were

more influential?
’ve ion: -How did you resolve any conflict or -Discussion

How are conflicts or disagreement that arose? Negotiation

disagreements resolved? -Change
-Consensus

W -What were the important Ectors that -Health & Safety of Parent

What are the important influenced this decision? ~Health of Caregiver

contextual Ectors that -Ability to Provide Fam. Care

influence the decisions? -Emergency Moves
-Availability of Care
-Quality of Care
-Costs & Financial Resources
-Sibling Relationships ’
-'l‘ime, Distance & Proximity

W -What outcome did the Emily want to -Safety & Comfort for Parent

What are the expected bring about? -Need for Services

outcomes? -What helped the Emily reach the Affordable Care

What helps the Emily to decision? What impeded the Emily? -Convenience

reach the decision? What -Quality of Care

makes it more difficult? -Caregiver Concerns
-Wishes of Parent

 

 

 

76

 

Table 3.2 - Summary of Interview Questions and Coding for Interpretive and

Theoretical Research Questions

 

 

Research Questions Interview Questions Coding
Desm'ptive Ouestion: -Could you describe how decisions -Conflict
How do selected families use were made in your farrrily as you -Discussion
prior decision making were growing up? -What influence -Negotiation
experiences in the family of did this have on the way you -Consensus
origin, marriages, and approached the decisions the family -Individual
parenting to make decision has made for your parent? -Joint
about elder care? -Expertise

-Could you describe how you and

your spouse make decisions? -Influence:
Theoretical Question: -What influence did this have on the None
Can a pattern of decision way you approached the decisions Similar
making procedures be the family has made for your parent? Same
identified for selected Other

families that reflects a family
norm regarding family
decision making?

-Could you describe how you and
your spouse make or have made
decisions regarding your children?
-What influence did this have on the
way you approached the decisions
the family has made for your parent?

(Influenced by...)

 

 

mscriptive Opestion:

How do selected families see
the current processes and
outcome as influencing
future decision making as the
parent continues to age?

 

-How will your experiences with
family decision making for your
mother or father influence future
decisions as he or she continues to
age?

 

-Use Discussion
-Use Negotiation
-Use Consensus
-Change

 

77

 

visiting the parent while he or she was in care.

The influences of various contextual factors were described by participants and
were summarized and coded. Categories of issues, concerns or circumstances that were
identified included: health and safety of parent; health of the caregiver; the ability to
provide family care; emergency moves; the availability of care; quality of care issues;
costs and financial resources; concerns related to sibling relationships; availability of
time; and distance from or proximity to the parent. These were included in the revised
conceptual map. Expected outcomes also were summarized and coded into categories.
These appear as the following: safety and comfort for the parent; the parent’s need for
services; the ability to afford the care received; convenience for the siblings; quality of
care issues; concerns about the health or well-being of a caregiver; and following the
wishes of the parent.

The responses were analyzed for evidence of influence from prior decision-
making and desired outcomes on the process and on subsequent decision-making. These
were coded as conflict, discussion, negotiation, and consensus (Scanzoni & Szinovacz,
1980). Decisions that were individual, joint, and by expertise were added to reflect
categories of responses that did not fit under these categories. In addition, the
respondents’ perception of influence of prior decision-making was summarized as
“None,” “Similar,” or “Same.” Some respondents saw partial areas of influence and
these are noted in tables for each family under findings.

Participants with a living parent were asked how their experience with family
decision-making would influence future decision-making. Their responses were coded

according to Scanzoni and Szinovacz’s (1980) decision-making procedures (discussion,

78

negotiation, consensus, and change).

The data were analyzed to determine if new information emerged that indicated a
departure from patterns expected from the original conceptual map. A revised conceptual
map was constructed to illustrate the results of this analysis. The original and revised
conceptual maps were compared to determine if the findings reflected theories that were

used to construct the original map.

79

CHAPTER FOUR

FINDINGS

The findings for this study are descriptive and exploratory. Data for the six
families are categorized in terms of demographic data followed by a description of each
family with their decision-making experiences with elder care and their patterns of family
decision-making for each family. The data are organized by family for the sake of
continuity. There is a summary of farme decision-making experiences with elder care
and a summary of decision-making patterns. There is a comparison of the revised
conceptual map with the original map to determine support for aspects of the theories
used in its construction. These are used to address the primary questions raised in the
first chapter regarding the purpose of the study along with the research questions
identified in Chapter Three. The primary questions were as follows:

How do selected families make decisions about finances, guardianship,

and the use of family care, home care, adult day care, adult foster
care or nursing home care for elderly parents with dementia?

How do selected families use prior decision-making experiences from

their family of origin, their marriages, and their parenting to make
decisions about elder care?

How do selected families use various decision-making procedures

(conflict, discussion, negotiation, change or consensus) in making
decisions for parents suffering from dementia?

Can a pattern of decision-making procedures be identified for selected

80

families that reflects a family pattern regarding farme decision-

making?

Demographic Data

The first member of each family (M1) was the person who initiated the contact in
response to the recruitment letters and was considered the primary respondent. As
described in Chapter Three, the interview format for other family members was modified
and used to validate the reports of the primary respondents regarding family elder care
decisions. The family munber indicates the order in which the first member of each
family was interviewed (F l-F6). Other family members are listed in the order in which
the interviews took place (M2, M3) for members of that family. The demographic data
are displayed in Table 4.1.

All primary respondents were interviewed in person. Four of the primary
respondents for the study were females and two were males. All of the participants were
Caucasian. The parents receiving care were evenly divided between mothers and fathers.
All of the primary respondents had either sole or joint medical power of attorney or
guardianship and were central figures in either delivering care or arranging for it. Five of
the families used legal and medical powers of attorney to carry out financial, medical, and
elder care decisions. One family (F3) used guardianship and conservatorship. The four
female primary respondents are involved in the medical field. They include a nurse, a
pharmacist, a clinical laboratory scientist, and a receptionist in a doctor’s office. The two
males are a salesman and a teacher.

All of the families are middle class as determined by their education and

81

Table 4.1 - Demographic Data for Sample

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Family # Sex Year Mar # Occ: Hours: Ethnicity Rel Edu Parent
Member # of Stat of M/Sp M/Sp
Birth Ch
FlMl F 1934 W 3 WM 40/40 En Gr Fr C RN Mother
F1M2 M 1937 M 0 WC 20/0 Gr En N C 1-2 Mother
F 1M3" M 1952 M 2 W/W 40/40 Gr En C BA Mother
F2Ml F 1958 M 2 W/W 23/50 Gr C C 1-2 Father
F2M2 M 1952 S 0 W 50 Gr N BA Father
F 2M3’ F 1954 M 2 WM 20/40 Caucasian N BA Father
F2M4 M 1956 Father
F3Ml F 1960 M 3 W/W 50/45 Gr Po En Fr C BA Mother
F 3M2" F 1950 M l O/W 0/60 Caucasian C BA+ Mother
F3M3“ F 1947 D O W 60-80 Gr C MA Mother
F4M1 M 1947 M 4 WM 40/40 C BS Mother
F4M2 F 1944 R 3/2 W/W 40/0 En Ir Du P MA+ Mother
F5M1 F 1947 M 1 WM 32/60 Po C BS Father
F5M2 M 1945 M 2 B/B 0/30 Po C HS Father
F5M3" F 1941 D 4 W 40 P0 C MSW Father
F 5M4 M 1949 Father
F6Ml M 1945 M 1 W/W 60 Gr Ir P MS Father
F6M2"‘ F 1943 M 2 WM 45/10 Gr Ir N MA Father
F 6M3" F 1939 R 5 WM 20/0 Gr Ir C BS Father
Legend:
‘Telephone Interview Occupation (Occ): Ethnicity: Religion: (Rel)
"Interviewed by E-Mail (M/Sp=Member/Spouse) Du=Dutch C=Catholic
Sex: F=Female M=Male B=Blue Collar En=English P=Protestant
Marital Status: M=Married W=White Collar Fr=French N=None
(Mar Stat) D=Divorced Gr-German
S=Single Hours: Ir=Irish Education: (Edu)
R=Remarried (M/Sp=Member/ Spouse) Po=Polish BA/S=Bachelors
W=Widowed C=some college
# of Children: 1st/2nd Marriage HS=Highschool
(# of Ch) MA/S=Masters

F2M4 and FSM4 did not participate in the study.

82

occupations. This was expected given the fact that recruitment was from residents of two
for-profit AF C’s and an adult day activity program. The activity program is nonprofit and
partially subsidized by the state of Michigan, but it also charges program fees on a sliding
scale. Thirteen of the seventeen participants have college degrees, with five having a
master’s degree and one with a specialist degree beyond the master’s level. Three others
have some college, and one completed highschool, but did not attend college. One
participant was not employed or retired, but has a degree and is married to a very
successful businessman. Two participants were considered as having “blue collar” or
wage-earning occupations, and the rest would be considered as “white collar” or
salaried/professional. Eleven have intact marriages, two are remarried, one is widowed,
two are divorced, and one is single, never married. Twelve of those who are married
have spouses with white collar occupations or professions. One spouse would be

considered blue collar, and one is a homemaker.

The Adams Family

The first family is the Adams family (F1) with members named Ann (P 1M1), Ben
(F1M2), and Carl (F 1M3). Ann was 67 years of age and was the oldest participant in the
study. She is a registered nurse and has been widowed since 1995. Her husband was a
housing inspector and a foreman. She is Catholic and has three grown children. Ann had
both medical and legal power of attorney to handle her mother’s affairs. Her mother was
just short of her 92nd birthday at the time of the interview. She experienced memory loss
that was diagnosed at a local geriatric office, but there was some uncertainty about

whether it was caused by Alzheimer’s disease. She required assistance with toileting,

83

bathing, and personal hygiene, and she could not prepare meals or do housekeeping. She
appeared to be in the middle stages of care. Ann described her mother as ambulatory
with a walker, and she was able to feed herself. She was residing at the AFC in Saginaw
afier transferring from a small AFC where she had resided for about three years. Ann has
two younger brothers, Ben, age 64, and Carl, age 49. Ben is semi-retired and working
part-time managing a self-storage facility. He was interviewed in person. Carl lives in
Nevada with his wife and two young children. He is a retired construction analyst for the

federal government, and his wife is an accountant. Carl was interviewed by telephone.

Adams Family Decision-Making Experiences with Elder Cele

 

Ann had both medical and legal power of attorney over her mother’s affairs.
However, she actively pursued joint decision-making with her two brothers, maintaining
an ongoing pattern of regular communication with both of them. She had the central role
in this process. Nearly all of the interaction was between her and each of her brothers,
with much less communication between Ben and Carl. Their mother was responsible for
making the decision for Arm to have both powers of attorney. In 1991, she put Ann’s
name on all of her financial affairs. In 1993, she had a will drawn up, and Ann also was
given power of attorney. Ben participated in making decisions and carrying out changes
in care for his mother. Ann kept Carl informed of their mother’s situation, and he
assisted with financial affairs including recommending investments. The decisions to
move their mother into a small AFC and then into the larger, staffed AFC were initiated
by declines in their mother’s health. The first move came when she was hospitalized
after a fall. She needed 24-hour care, so she was moved into adult foster care. All of the

siblings were working at the time, and Carl lived too far away and had young children at

84

home, so none of them were able to provide family care. When their mother’s needs
became too great, the owner told Ann that her mother would have to be moved. Ben
heard about an opening at the staffed AFC in Saginaw, and they were able to secure a
bed.

The Adams family did not report experiencing conflicts or disagreements with
regard to decisions about the care of their mother. Ann stated:

“We have been very agreeable. We call my brother in Nevada and tell him

everything that is going on and my brother and I talk it over so we know

what’s going on.”
All three reported that their ongoing communication and discussion kept everyone
informed prior to and during decision-making. It also appears that each sibling found a
way to make a contribution to necessary tasks:

Ann: “I always call to let them know what’s going on and then my brother

in Nevada is more financially astute than I am. So I keep getting these

reports from investments that we have. So, I just ship everything off to

him and let him check into it to make sure that everything is going well.”
The contextual factors that influenced their decisions were primarily emergency situations
that necessitated moving their mother and the availability of space. They needed to make
a move and there was a bed available. The family also felt with both moves that the
facility afforded a safe and comfortable place for their mother, which was an important
outcome.
Decision-Making Patterns in the Adams Family

The Adams family decision-making is illustrated in Table 4.2. Ann described

decision-making by her parents as “probably my mother made most of the decisions”

85

6583 u m

AoEez< .6 530m 6m»; u Ema...

352 u 2 :65 6o sauna u 8
>353< .5 53.5 60602 .I. «3...

 

 

 

 

 

83:96 5.“ H5996 363m 56386 6.5 36—. “A
35833 853
33850 683% b=6£6>< 663m 56386 65 36a ”2
6 56386 5:52 6 33850 358 mofimbem
665 3550 6058 506m 6 56385 368 6 660m 6:86 56386 66» 56—. ”Om ~80
3:66583H <2 “m
838 Eugen e as:
33850 538 6835 362634 663m 56386 65 52. ”2
6 56386 68:50 6 33850 358 zoeowuoEm
665 3350 568 .330 6 56385 >368 6 618m 8636 56386 65, 36—. ”Om com
3328 3:96 052 656666 063 E ”m
£5888 2,38 5352
68.2.5 .0555 6 23,—. 6:86 865558 6 56385 “2
36538 e633 6895 68 6 326392
6 56386 “56:8 33850 358 anoeowbfim .088 65 56am
66> 3.650 6 366m 6 56385 368 6 666m 302 856606 665 5502 ”Om *5...
256609 Mao—«E 339a..—
.eosgnnam 2:830 5668— .265..— ioaeeU 3330 933:5 wen—a2 5662— 5m...—

 

 

 

 

 

 

 

 

hmfiah 35.3.. 2: .3 wen—«2 5660a— bmaam .23 52 659350 .5 $5.55— .6 nemEamEeD < .. mi 25,—.

86

because her father was working a lot. She recalled her father making some decisions.

Ann stated:

“I don’t remember ever hearing any discussions between my mother and
dad about things that were going on. I wasn’t home a lot.”

During World War 11, Ann babysat for the people who lived next door. They both
worked long hours at a local plant making war materials. She did not remember any
disagreements between her parents. She did not see a connection between their decision-
making and that which she and her brothers used. They were much more likely to discuss
decisions than her parents were. Ann stated:

“It was just that when my mother gave me charge of all this, I thought I

needed to involve everybody and I just don’t want to make my own

decisions, because I think they all need to be aware of what is going on.”
Ann described decisions in her marriage: “We usually talked them over.” She stated that
when there was a disagreement: “We usually would compromise.” She saw decision-
making with her brothers as follows:

“I think we are probably more open with each other, probably, than my

husband and I were. I do much more communicating with them....They

know I have power of attorney and power over her health care and things.

I don’t want them to see me as being the mean person who can do

whatever she wants to do without consulting anybody, even though I do

have that.”
Ann described how her mother’s family had a very negative experience related to an
inheritance and she did not want to see any hard feelings with herself and her brothers:

“...I felt that I tried very hard to always include them in everything and to

get their viewpoints in anything....My mother and her family were split

apart about things like that and I hate to see the same thing.”

With her children, Ann made most of the decisions and was the main disciplinarian. Her

husband did childcare early in their marriage when she worked staggered shifts at the

87

~+§

hospital. He handled matters when he was home with the children. She did not see any
connection between their parenting decisions and her decisions with her brothers.

Ben recalled decisions being made between his mother and father. He reported
that they talked about the decision and decided what they were going to do. He did not
recall any disagreements. Ben saw some similarities in how decisions are made with his
sister and brother regarding his mother. Ann calls him and his brother, and they talk
about what to do. In his marriage, Ben and his wife talk about decisions. If either one of
them disagrees, then one has to compromise or they do not implement a decision. He saw
discussion as a major aspect of decision-making in both his marriage and in making
family decisions about the care of his mother. Ben and his wife do not have any children,
so he did not describe parenting decisions.

Carl stated that he grew up more like an only child due to the age disparity
between himself and his brother and sister. He recalled that his parents made decisions
together. He said they discussed things at the dinner table. Carl saw his parents as a
traditional couple in terms of his mother staying home and taking care of the household
and his father going to work. When they had a disagreement, they would let it be for a
period of time and get back to it at a later date. He saw similarities between his parents’
decision-making and that which he and his siblings have used. Carl and his wife use
communication to make decisions. If they disagree, then they drop it and do not go any
further with it. Again he saw a similarity between decisions in his marriage and with his
siblings in terms of the use of communication. Carl and his wife use joint decision-
making as parents and this is similar to what he and his siblings use.

There is a discrepancy between Ann’s recollection of her parents’ decision-

88

in.

making and that of Ben and Carl. However, she qualified her response by saying .
“probably my mother made most of the decisions.” Then Ann described how she started
working at age nine and was gone most of the time, indicating that she was not sure how
her parents made decisions when she was not there.

Important context factors for the Adams family included the declining health of
their mother that resulted in emergency moves each time her care was changed. The
availability and cost of care were factors. Time, proximity, and distance influenced the
decisions to use AFC care, to have Ann appointed sole power of attorney, and to share
various responsibilities. Positive relations among the siblings were also considerations in
making decisions. All three siblings were consistent in describing family decision-
making for their mother, and the fact that they used discussion, agreement (consensus),
and shared power, even though Ann had sole power of attorney. They described how
they have shared responsibility with each one making a contribution. Carl saw his role as
the least of the three, but Ann viewed it as important in terms of having funds to pay for
her mother’s care. All three described the desired outcome in terms that related to the
need for their mother to be safe and comfortable. Costs were mentioned by Ben and
location by Carl. All three reported being satisfied with their decision-making process
and expected to continue to use communication (discussion) and reaching an agreement

together (consensus).

The Baker Family

The Baker family (F2)'is comprised of four members. Donna (F2M1) was the

primary respondent. She was 42 years old and had medical power of attorney for her

89

 

father, who was approaching his 80th birthday. He was at the AFC in Saginaw and
required complete care except for feeding, which was beginning to be difficult. He was
ambulatory, but was beginning to show signs of difficulty maintaining his balance. It
appeared that he was entering the later stages of care. Donna attended college, but does
not have a degree. She works part-time as a receptionist in a doctor’s office. She is
married and has two teenagers who live at home. Her husband is self-employed as a paint
contractor. Donna’s father was diagnosed with Alzheimer’s disease after having
numerous tests to rule out other forms of dementia. Donna has two older brothers and an
older sister. Eric (F2M2), age 49, has a B.A., and is an accountant. He is single and has
never been married. He had legal power of attorney and handled all of his father’s
financial affairs. Eric lives in the area and visited his father regularly. Fran (F2M3), age
47, has a BA. in occupational therapy, and is employed part-time. She is married and has
two teenagers at home. Her husband is an engineer. Fran lives in California, but returned
to the area for visits and to participate in important events such as major moves with her
father. Greg (F 2M4) is 45 years old and also lives in California. He did not participate in
any decisions or responsibilities related to his father’s care and did not participate in the
study. Fran maintains telephone contact with him and keeps him informed of the

situation.

Baker F arnily Decision-Making Experiences with Elder Care

 

Donna had medical power of attorney, and Eric had legal power of attorney. Both
live in the area, so a major reason for this arrangement was their availability. The
decision was made at Fran’s initiative while their father was still able to participate and

sign the papers. Donna described the process as follows:

90

“There were no arguments about [Eric] taking over the finances or my

being the health care power of attorney. There was not an argument

among us when it was time to get together to tell Dad he needed to move.

Not with taking the car away. We have been really fortunate that we have

all wanted things to go as smoothly with the best results for Da .”

Fran had a great deal of influence because of her background as an occupational therapist.
She has professional experience working with elderly patients and added to her
knowledge by attending Alzheimer’s Association meetings and by gathering information
about the stages of the disease and various resources. Each step along the way she
informed Donna and Eric about the next stage and how to prepare for it. She saw this as
her contribution since she lives so far away. Eric handled finances and investments since
he is an accountant. Donna either did not work or worked part-time, which allowed her
to assist with housekeeping when her father lived in his home, and to arrange for medical
and dental care. As mentioned earlier, Greg was not involved in his father’s care or in
decision-making. Fran kept him informed, but he did not call her or anyone else in the
family.

The Bakers had to make decisions about moving their father into a retirement
community where he lived for about three years. When he was no longer able to firnction
there, they decided to be move him to a smaller facility with staff that could manage his
condition (AFC). They planned each move ahead of time and were satisfied with the
outcomes. In both situations, the safety and comfort of their father were important
factors. They did not feel that they could provide family care. Their father had purchased
a long term care policy because he did not want to be a burden to them. Donna reported:

“I think it was after his mother died that he bought the long-term care

policy, because she did live with his brother and his wife for a period of
time before going into a nursing home... I think that really spurred him. ‘I

91

don’t want anybody to have to take care of me. I don’t want to have me in
your home and I have this policy and I don’t want to be a burden.’ So he
made it very clear on what he wanted in his own steps to provide for
himself and I think that with my sister’s leadership and our desire to put
that first, we made sure what he wanted and what he needed was done.”

Donna has children at home, and Eric is single and works full-time. Fran lives in
California, and they did not want to uproot their father and have him live there. Eric
mentioned that having the financial ability to afford the care was important. The Bakers
did not report any conflict or disagreement about these decisions:

Donna: “We have always known that we would be backed up by the other
two. We have always known that, because the decisions were mutual.”

The family members attributed this to their planning and communication. It also
appeared that sharing responsibility was a major part of their success:

Donna: “Well you know [Eric] kept an eye on stuff anyway...he’s a
comptroller for the city so he has a financial background. We all settled
into our boxes as we call them....I was always the one who was there kind
of looking afier and taking care of the house. [Eric] was always the one
who kept an eye on things just to make sure. He’s the natural financial
man because that’s his job. [Fran] was always the one who, I don’t know
if I want to say intellectual, she was the one who had more drive. More
desire to know more all the time. And being far away where she couldn’t
follow through with things here, it was natural for her to be a kind of
starting point for us....She had seen a lot of Alzheimer’s patients in her job
and kind of knew maybe what would come next or what should be done or
what they were doing in her area.”

Each of them had an important role to play in managing elder care for their father.
Decision-Making Patterns in the Baker Famin

Decision-making in the Baker family is displayed in Table 4.3. Donna stated that
her father made the major decisions in the family. She described this as follows:

“My dad made them. What he said went. My mom was not a meek

personality by any means, but she was of that age that she gave up her
home to move to where he lived. She gave up her religion to become his

92

21‘

385 u m

3803‘ mo 830m Emu; n Ema...

352 u 2 £80 0o .35 u on

hop—03‘ .«0 .030." 60302 n 63...

 

 

 

 

 

30328 3:85 306383 5.5 36—. ”A
mass. 2658
bzémcoamom 00565 333% 306383 55 36a ”2
383m 6.00388 333E
306383 3063.598 330300 3033:3006. a. 33.83
33:00 a. bomam a. 306385 £0638 .bomam a. £088 5 3:85 638083 33 53am ”Om 5.5
30338 <2 mm
£58258 8:3 9&8
330300 383m 30388 .3335 <2 ”2
a. 83.53““ 530m 383m 33.583 0% 3.5.
306383 6033:3006. 330300 30.53308 a. 38220 305383 3:83
33:00 65:80:84 on. 306385 306.5896. 50.3% 3353 E 8:85 50m .38088 “0: 0O ”Om *06m
953 30663
has.“ an vooaonmfi flange—mam 3:00 432. ”m
60:35 3:36:080M batsman um 08E. 323mm 30663 8.88 30.“ ~50». ”2
330300 6.85am 383m 3556
a. 30:80— a. 530m 383m 80¢ tongsm 38220 30% 30683
306383 E86 3233 330300 began 0% 3065.596 36:83 8.55am 33 8502 .30663
35300 838082 3 306385 .88 30.“ 3002 .3 30303.6: .833 33 85mm “Cm 3309..
306.00G wan—«2 383...—
33—5215 050030 :05qu .365:— 3830 303:0 033::— wnfiaz n06.0on 52...—

 

 

 

 

 

 

 

 

»:Eah boo—am 05 .3 wan—a2 .5633— »:Eah 5m? an: 132—0300 .3 8:25;— u0 gar—«9300 < - ad. 030,—.

93

and she stayed home and raised the kids. He made the money and he made
the decisions about what to do with the money. I don’t think of her as
down-trodden in anyway. She got what she wanted like we all do. She
never lacked for anything, but she just deferred to him because she thought
he would, I don’t know if he would make better decisions, but that was
comfortable for her. He did the grocery shopping all my years, which I
thought was hilarious. She made the list, he did the shopping because ‘she
bought too much junk.’ So if we wanted to use the car, we went to
Dad....So he made all of the decisions. That’s all he knew.”

The only similarity she saw with how she and her siblings made decisions was the fact
that her father planned ahead, and they have been successful by discussing plans ahead of
time. Donna described her own marital decision-making:

“I think it’s more of a mutual thing than I perceived my parents to be, and

again, if that’s the case or not, I don’t know. But it is opposite in the case

that I do the checkbook. I pay all the bills on top of doing the rearing of

the children and that just came about.”

She saw a similarity with her siblings:

“In the fact that we kind of hash everything over and, you know, do the good, the

bad, and the ugly thing before deciding that’s what we should do....I think the

older we all get, the bigger the picture we look at. When you’re young, you’re
only focused right here. Me, me and me. Now as you get married and have
children, and now have to take care of parents, you have to look at a larger scale
of issues.”

Donna and her husband discuss their expectations regarding raising their children
and then she implements those decisions and is the main disciplinarian. She felt that
working with her siblings by discussing plans ahead of time and making decisions
actually influenced the way her and her husband approach parenting decisions. Donna
described this as follows:

“I would have to say doing what we have done for my dad maybe has

changed the way I do things at home....I see how beneficial it has been to

look at the next stage ahead of time and throw out every possibility and,

you know, give more thought and reject it and make decisions. So now I
think that has helped with [my son] being a junior now, saying we better

94

look ahead now to college and what he needs to do. Where I think maybe

my head would have been more in the sand a little....He’s my first kid....So

in that respect, maybe that has helped me see a bigger picture and know

that it worked so well with my dad to do things ahead of time, that gosh

maybe that should spill over into other areas. Why wouldn’t that work out

just as well?”

Eric did not recall very much about how his parents made decisions. He recalled
that each of his parents would discipline the children depending on who was home.
Occasionally his mother would wait until his father came home, if it was a major
problem. However, his mother dealt with most of the day-to-day discipline. Eric is
single, has never married, and does not have any children. He stated that it is different for
him, since he is the only one making decisions.

Fran validated what Donna described. She saw decision-making with her parents
as her father being autocratic. She thought there must have been some joint decisions
made, since they had 125 foster children in their home, but she does not recall actually
seeing her parents make decisions together. The only influence she saw on how she and
her siblings made decisions was that they researched things beforehand and planned
ahead as her father did. Fran and her husband use a “democratic process” for making
decisions in that they both have full say. If they disagree, one is likely to go along with
the other if the decision is in an area of strength for that person. For instance, with the
children, her husband tends to go along with what she thinks, and with money she tends
to go along with what he thinks. She saw a lot of similarity in how she and her sister and
brother made decisions, especially with getting each other involved and getting input.

She tried to include Greg, but he chose not to be involved.

All three siblings identified safety and supervision needs for their father as

95

important context factors. The fact that their father planned ahead and also purchased a
long term care insurance policy allowed for sufficient financial resources and indicated
his wishes. Time and proximity determined the roles that Donna and Eric played.
Distance limited F ran’s role. Positive sibling relations contributed to the success of their
decision-making. All three described their decision-making for their father as including
regular communication, discussion, and agreement (consensus) about what to do. They
shared power by splitting the powers of attorney between Donna and Eric. Fran had
power in the fact that she is knowledgeable about dementia and about resources. She
took this on as her share of the responsibility, while Donna and Eric shared
responsibilities in Michigan. The desired outcome each described was to have a safe and
positive atmosphere for their father. Donna mentioned having a trained staff and a
convenient location. Eric talked about socialization and activities. Fran added
supervision. All three reported being pleased with their decision-making process and
expected to continue communicating, discussing, and reaching an agreement as they faced

fiiture decisions.

The Cook Family
The Cook family (F 3) is comprised of three sisters. Hannah (F 3M1) was 41 years

of age and was the primary respondent. She has a BA. in pharmacy and works full-time.
She is married and has three young children at home. Her husband is employed full-time
in sales. Hannah’s mother died at age 78 in December of 2000. Thus, the Cook family

had completed their caregiving for their mother. Before her mother’s death, Hannah had

guardianship. As the only sibling living in the area, she was very involved in her

96

mother’s care. Her mother was diagnosed with Alzheimer’s disease by her family
physician. Hannah’s father was caring for her mother at home until he died suddenly in
January of 2000. After his death, Hannah’s mother lived at the AFC in Saginaw. She
moved to the county hospital for rehabilitation after she fell and broke her kneecap.
Later, she moved to a local nursing home. Jan (F 3M2), 51, lives in North Carolina. She
is married with one adult child. Jan has a BA. with some postgraduate education. She
was not employed. Her husband is the chief financial officer for a major corporation. Jan
made a number of trips to Michigan to visit and to participate in securing care for her
mother. Karen 0'" 3M3) was nearing 54 years of age when she was interviewed. She has a
master’s degree and is employed as a director of benefits for a hospital in Philadelphia.
She is divorced with no children. Karen was her mother’s conservator and was
responsible for all of her financial affairs. She made several trips to Michigan to visit and
participate in care planning.
Cook Family Decision-Making Experiences with Elder Care

Hannah is the youngest of the three sisters in the Cook family. She is 10 years
younger than Jan and 13 years younger than Karen. Hannah is the only one who lives in
the area. She reported that living here, along with her background as a pharmacist, were
major factors in the decision that she have guardianship. Karen is the oldest and was
named the administrator of her parents’ will, so she assumed conservatorship over her
mother’s financial affairs. Hannah described this as follows:

“[Karen] is better with money than I am, so it was natural that she do that.

I am better at understanding my roles than she is, so it is natural I be the

guardian. Whoever was going to be wherever mother lived was going to

be the guardian. There was talk at one point of moving her to North
Carolina or to Pennsylvania. But her family and the things she knows the

97

most were all here, so we decided to leave her here.”

The sisters had to make decisions about moving their mother into three facilities. Each
time the decision was made under some duress. The move to the AFC in Saginaw was
made after the death of their father, who had been caring for their mother. The move to
the county medical care facility was made when their mother broke her kneecap and
could not return to the AFC. The move to a nursing home was made because they felt
their mother was not receiving appropriate care in the county medical care facility. The
Cook family decided not to use family care based on their circumstances and their
mother’s wishes. She had stated that she did not want to move in with any of them as her
own mother had done with her. Hannah said:

“...when she first became ill she was cognitive enough that she never

wanted me to move her back home and she never wanted to move in here.

That was always a given that we would never do that. My grandmother

came to babysit when my sister [Jan] was born in 1950 and she never left

until 1990. So you see I grew up with Grandmother in the house and

Mother said ‘I will never do that to you. I don’t want you to take me in

and I won’t come if I am in my right mind. I will not come to your home.

There’s just no way I would do it.”’

In addition, Jan and Karen live out of state and Karen is divorced and works full-time.
Hannah works full-time and is raising young children.

The Cook family reported that they were able to make decisions successfully
without conflicts or disagreements. They felt that part of this was due to the emergency
nature of the moves and having few alternatives. They also felt that regular
communication and knowing what their parents wanted was helpful. The outcome they

were trying to attain was to have a safe and comfortable place where their mother would

be treated with dignity and respect:

98

Hannah: “That she be treated with respect and dignity. We were actually
hoping that she would be able to stay there until she left this earth. We
wanted to make sure that her wishes would be carried out to the end....”
They reported being satisfied with the decision-making process with all three moves,
although they were not happy with the care at the county medical facility.
Decision-Making Patterns in the Cook Family
Decision-making by the Cook family is depicted in Table 4.4. Hannah could not
recall seeing her parents make decisions together. She described this as follows:
“Mom really was the caregiver. I mean it was the typical early 60’s kind
of thing where Dad went to work. And back when I was a kid I don’t
think any dad had a whole lot to do with their children. I credit my mother
with giving me most of my beliefs and values and belief in God that I’ve
got. I credit her with that.”
“Did they ever co-make decisions? Not that I can remember. I can
remember when, like I said, my grandma came to babysit in 1950 and she
didn’t leave until she died in 1990.”
Hannah and her husband make decisions by deferring to the one with the most knowledge
or expertise:
“Well he has areas that he is better in than I am, so I say ‘you know about
this more than I do. I trust your judgment, go with it.’ I tend to trust him
very much. When it is something that he knows about, he talks it over
with me. He’ll explain to me and I say that sounds fine. The things that I
know about, he trusts me to make those decisions. Things I know more
about, then I do it. Where he knows more about it, he does it, and that’s
fine. That seems to work. I feel comfortable with it.”
She viewed the decision-making with her sisters as being the same as that which she and
her husband use. Hannah and her husband discuss child—rearing together. She saw this as
being similar to how she and her sisters made decisions.

Jan recalled that decisions were made primarily by her father and that he never

consulted anyone else. Her mother made child-rearing decisions in the home, but her

99

330335 N m
>050=< .3 30305 53mg u 535...

.852 u 2 .630 0o 3:50 u 03
>0E03< 50 30305 30302 n 30.5...

 

 

 

 

 

 

<2 ”5
003363 a. 033.5.
333630805 800.5803 5333035 860330 3333335 52
60335 6330.35 30333 083 0300 .50 3:30
303 303055 30.6300 338300 6.0063 53090.35 3333330.— 33 3053.5 .30663
<2 0% 30.3% a. 306385 3003 8.30305 0302 36003 3:30 308 30502 ”On .3835
0302 306383 333 0335. ”.5
3353853
303m 00583 0% 035. .3333 306383 333 3335 ”2
30305 30333 0385 0.50 50 .0330
303 303020 306300 338300 6308 503030335 33363303 393 30305 .30633
<2 0% 30.3% 3 306385 303 6.30305 0302 36003 3:30 338 30302 ”05 33—.
3:333 306383 335 3335 ”5
80.63.» 355630835 03.33 83.5030 6.3030 3000 00 30,505 ”2
6.303302 30.32% 333383 a. 033.5.
«00803 30305 303335 08$ 0.80 .20 3330 303—30 3030
303 303036 0% 3333 338300 62633 53080335 30633 333 30302 .30633
<2 3.05 303005. 0% 306385 3003 6.30305 0302 33a :88 .03 6005 ”05 333305...
306305 3332 2803..—
.3033833m 03.0330 306605 .5335 0300300 30:30 0030353— 36.32 306305 .365

 

 

 

 

 

 

 

33335 0.000 0.: .3 36.32 306605 5333,.— 56» 332 35300300 .50 83080.5 50 38639300 < - v.3 0335.

100

father decided what school they attended. Jan did not see any similarity in the way she
and her sisters made decisions. Jan and her husband discuss decisions and make them
together. They also use discussion when there is a disagreement. She saw her role with
her sisters as that of peacemaker since Hannah and Karen do not get along well with each
other. Jan and her husband made decisions as parents together. She did not see any
similarity with how she and her sisters made decisions.

Karen remembered her mother made child-rearing decisions and her father made
decisions about everything else. She did not see any influence of this on the way she and
her sisters made decisions for their father. When Karen was married, she and her
husband worked different shifts, so they made decisions individually. They did not have
any children. She saw herself as having emulated her parents more in her marriage than
she did with her sisters in making decisions for their father. She and her sisters made
decisions in the opposite way.

All three sisters described their parents’ decision-making as more or less
individualized and did not see any influence on their elder care decision-making. The
first two changes in care took place under emergency circumstances. The first move
came as a result of the sudden death of their father. The second was caused by her
mother’s injury. The third move was in response to concerns about quality of care. Time

and the wishes of her mother dictated the need for placement for Hannah. Proximity
dictated that Hannah have guardianship. While Jan lives out of state, she has had the
time to participate in each move. Karen also lives out of state, but she had less time than
I an. She participated in the first move, but not the last two moves. All three sisters

reported their decision-making for their mother as including communication (discussion)

101

and agreement (consensus). For example, Hannah stated:
“...Everything was always done by committee. [Jan] will say ‘I didn’t do
anything,’ but she really did. She would listen to the both of us and make

suggestions, and really, everything except the end of life prayer was done
by all of us.”

The Cook family shared power and responsibility, with Hannah having guardianship and
Karen having conservatorship. Hannah saw the desired outcome as carrying out her
mother’s wishes to not be a burden to her daughters and also having her mother treated
with dignity and respect. Karen also saw the desired outcome as carrying out her parents’
wishes. She saw safety and comfort for her mother as important, as did Jan. Since their

mother died, firture family decision-making for elder care was not applicable.

The Davis Family
The Davis family (F4) is comprised of two adult siblings. Larry (F4M1) was 54

years of age, has a BS. degree, and is employed full time in sales. Larry is married and
has four adult children, and his wife is employed as a college instructor and a tutor. Larry
had joint medical and legal power of attorney with his sister, Meg (F 4M2). Their mother
was 88 years old and had been residing at the AFC in Bay County for about three years.
She had dementia and also suffered from macular degeneration. While a formal
diagnosis was not made, there was some suspicion that her dementia may have been
Caused by mini strokes or multi-infarct dementia. She could feed herself and was
aanulatory with a walker, but needed assistance with dressing, bathing, and routine daily
aetivities. Thus, the Davis family appeared to be in the middle stages of care. Meg, 57

years of age, has been married to her second husband for twenty years. He also was

102

previously married. Meg has three adult children from her first marriage and her husband
has two from his first. Meg has a master’s degree plus thirty credit hours beyond her
master’s and is employed full-time as an elementary school counselor. Her husband is a
retired stock broker. A unique aspect of the Davis family is the fact that their mother
raised them as a single parent. Their father died when Larry was three and Meg was six
years old, and their mother never remarried. Both Larry and Meg were interviewed in
person.
Davis Famin Decision-Making Experiences with Elder Care

Larry and Meg shared joint power of attorney over their mother’s affairs. Larry
arranged appointments and took his mother, since he has a flexible schedule. He made an
interesting observation about this experience:

“Generally I take my mom to the doctors, probably 90 percent of the time,

and I get comments from the nurses and the doctors: ‘You are such a nice

son to do this.’ Well they’re just not used to having sons do this probably

as much as daughters...”
Meg handled the checkbook since she lives closer. Larry handled the investments:

“We have a split in a way. My sister takes care of the writing of the

checks and so forth out of a checking account that is Mother’s money. So

my sister really does the day-to-day writing of the checks. I primarily deal

with the financial investment end of my mother’s funds....It’s always a

consensus opinion. I mean we always have agreement on what we are

going to do....”
Prior to placing their mother at the AF C in Bay County, they had to make decisions for
her while she lived in her home. This included surgeries that she was reluctant to have
and bringing help in to care for her. They felt that they have always been close and have

a great deal of respect for each other, and this helped them to make decisions together. In

addition, they knew what their mother’s wishes were, and they discussed everything and

103

planned ahead. They reported no apparent conflicts or disagreements. With their firll-
time employment and their mother’s level of need, it would have been difficult to provide
family care. A difficult decision was the sale of the family home. It was mainly difficult
for Meg. Larry was patient and waited for her to be ready before they put it up for sale.

The Davis family felt very positive about their ability to make decisions together.

Each of them had an important role to play. Larry described this as follows:

“We make the decision together but there is never, I mean there is very,
very seldom a unilateral decision....we have a pretty definitive separation
of our duties, and they have changed through the last ten years, too. And
you know, with Mother in a facility now on a twenty-four hour basis, it has
minimized both of our duties here. I would say my sister still has more
daily duties, probably, because she has to write checks. I guess I would
still say I probably provide the drive. If I recognize that there is a problem,
I am more apt to go after it and find a solution, then present her [Meg]

with some kind of solution, and then we do it together.”
The outcome the Davis family wanted was to make sure that their mother was safe and
comfortable. Larry attributed some of their success to having the money to make choices.
It helped that neither of them had to pay for their mother’s care. Larry also felt that it has

been easier to get along since there are only two of them. He wondered if larger families

might have more trouble agreeing with each other simply because there were more people

involved.

Decision-Making Patterns in the Davis Family
Decision-making by the Davis family is displayed in Table 4.5. His father had

died when Larry was three. He remembered his mother using her father for advice about

decisions that she made:

“...I mentioned my father died when I was three, and in our family I think a
lot of decisions were made between my grandfather and my mother. I
think Grandpa had a lot to say about things, but again my mom was very

104

, 3830 u 3

30330.2 .3 30305 5305 u Ema...

352 u 2 :30 0o 33;..— u 03
>0503< .3 3030.5 30302 n 305.

 

 

 

 

.8333 306383 :33 33p. um
33330803 3:333 306383 335 033—. ”2
303m 00335 333
338300 30303 303m 303203 003603 80333 3 3030.333
3 306383 30.3300 338300 333383 3 0335. 3330333 3033300 6306303
0333300 3 .0003 3 306385 3303 33305 0302 033 30302 303 30303 "Om 302..
0302 8306303 603 033 0.33 ”3
306383
.3 3300 8330333300 3 338300
3066 335 3_ 33333 306383 333 333—. N2
3.363080% 303333 030603
8.36 3:383 3 0&3.
338300 30303 30335 60033 305 330:0 .3333:an
3 306383 30300 338300 6003803 333033 60303623 3 333033 3033300 8306303
0333300 3 303m 3 306385 330: 33305 3308 300M 033 30302 303 303005 ”Cm 0335..
306305 33.32 6333.5
303—0835 0.300030 306305 £6335 «300300 30.3.30 00303535 3332 306305 335

 

 

 

 

 

 

 

 

33335 0.335 030 .3 33632 306305 2333...— 53» 332 33300300 .3 3303.06— .3 38339300 < . m3 033,—.

105

young...and her father was right there in town so it blended quite well.”
His mother did a lot of planning and organizing. He recalled that she would involve him
and Meg in discussing and planning vacations. The similarity that he saw in making
decisions with his sister was that he kept records and investigated before making a

decision:

“One thing Mom would do, is she kept records. She kept records and I
know that is how I make decisions. I keep files and...I investigate things

before I make decisions...”

Larry and his wife talk about almost every decision. He feels that they do a good job of

discussing:

“...we talked about almost every decision. I really think we do a real good
job of discussing. I don’t think either one of us would make any major decision, I mean
say over a hundred-dollar decision, without talking to one or the other about it....I think
there is almost always a consensus. I think we would pass on something that one was
against. Even if one felt strongly about it, and one felt against it, I don’t think we would

do it.”

He saw his approach with his sister as different from that which he used with his wife,
although he and Meg discussed their decisions. Larry saw his wife as making most of the
decisions with their children since he was gone a lot. He did not see any similarity in this
and how he and Meg made decisions about their mother.

Meg described the situation as her mother being in charge. She validated Larry’s
description of her grandfather’s involvement and added that uncles also were consulted.
She recalled the discussions about vacations, but felt that it was mainly her mother who
Would make a suggestion about where they would go and Meg and Larry would agree.
Meg did not see very much similarity in how she and Larry made decisions since her

mOther was a single parent, and they did not get to see negotiation and interaction. She

106

felt that their mother taught them to respect each other, and so they tried to work things
out as a way of “honoring” her. Meg and her husband talk about major decisions. They
were married when her children were young, so they accepted him more as a father than a
stepfather. She felt that she and Larry also have done well at discussing decisions
together.

Context factors for the Davis family included their mother’s declining health that
caused Larry and Meg to bring someone in to care for her, to make decisions about
surgeries, and to move her into an AFC. Time and proximity determined who took care
of what tasks. Both mentioned their positive relationship as important in reaching
decisions successfully. Larry mentioned the fact that financial resources allowed them to
make choices fi'eely. Both described ongoing communication (discussion) and agreement
(consensus) as important aspects of their decision-making together, along with knowing
their mother’s wishes:

Larry: “...I think my sister and I have been extremely fortunate that we

have been able to make these decisions concerning my mother’s health,

and we have done it without arguments. Again, I think it’s planning that

my mother did ahead of time. We absolutely know her decision. We are

not trying to anticipate her wants and desires...”

The Davis family shared power and responsibility by having joint powers of attorney and
coordinating tasks between them. Their mother’s safety and comfort were desired

outcomes. They expected to continue to use the same decision-making process in the

future.

Th reen Famil

The Green family (F5) is comprised of two sisters and two brothers. Nancy.

107

(FSMI) was 54 years of age and was the primary respondent. She is married with one
adult daughter who is in college. Nancy has a BS. degree and is employed 32 hours a
week as a clinical lab scientist at a hospital. Her husband is employed as a teacher.
Nancy’s father was 86 at the time of the interview and was residing for about three years
at a county medical care facility. He was diagnosed with Alzheimer’s by a geriatrician.
He was totally incapacitated and needed to be fed and bathed and changed. Thus, the
Green family was in the very last stages of caregiving. Prior to entering the facility, their
father lived at the AFC in Bay County for three months and a nursing home in Saginaw
County for three months. Nancy had both medical and legal power of attorney. Her
mother was alive when these moves were made, but the family was instrumental in
bringing them about since she was reluctant to move him into care. Nancy’s mother died
of colon cancer about six months after the last move. Nancy visited her father as often as
possible. Pete (F 5M2) was 56 years and is married with two adult children. Pete is a
retired auto worker. He lives in the home that his parents built and in which they raised
their family. Pete’s wife is employed part-time as a restaurant worker. He visited his
father at least weekly and in the past would take his parents to appointments since he
worked third shift. Rachel (F5M3) was 60 years of age, has a Master of Social Work
degree, and is employed full-time as a clinical social worker in Sicily. She requested to
participate in the study by e-mail and was sent a prefonnatted interview form which she
filled out and returned by e-mail. Rachel is divorced and has four adult children. She
traveled to Michigan for visits and to participate in care decisions earlier in her father’s
care when she lived in the United States. With her background, she has been an

important resource person for the family. Sam (F 5M4) is four years younger than Nancy.

108

Initially he agreed to participate in the study, but declined to schedule an interview either
in person or by telephone, stating he did not think he could add anything to what his
sisters and brother had to say. His right to refuse was respected.

green Famin Decision-Making Experiences with Elder Care

Nancy had sole power of attorney over her father’s affairs. She made a conscious

 

effort to share responsibility for decisions with her brothers and her sister. She stated: “I
would not make any major decisions without consulting them.” Nancy felt that they have
a right to participate, since it is their father too. Her mother was involved in the three
decisions about care for Nancy’s father. However, Nancy and Rebecca were the force
behind these moves. Their mother began having health problems and could no longer
care for their father. All of the siblings were employed full-time and their spouses also
worked, so it was difficult for any of them to provide family care. They were able to
convince their mother to go along with the moves that were made. The decisions were
discussed with Pete and Sam and they were in agreement:

Nancy: “...we had a family conference, I think, once. We sat down and

said yes. Just simply you know it’s time for Dad to go to the nursing

home. They both agreed basically. It wasn’t any long drawn-out

conference. They agreed.”
Rebecca had considerable influence over these decisions because of her background in
social work and the fact that she is the oldest sibling. However, since she lived in
California and in Sicily, it was not feasible for her to have any power of attorney. Still,
Nancy used her as a source of advice and support on a regular basis.

After their mother’s death, the Green family had to make decisions about the sale

of the family home, medical treatment, and a “do not resuscitate” (DNR) order for their

109

father. Medical treatment decisions were made primarily by Nancy and she kept her
siblings informed. The DNR was discussed and papers were signed by all four siblings
indicating agreement:

Nancy: “...I happened to be visiting them, and so on and so forth. We

would just have a conversation....We discussed it and decided and sort of

came to a consensus that if something should happen again...let them do

whatever they can do and not take him to the hospital again.”

The Green family wanted their father to have a safe, caring place where he would
be comfortable. The initial move to the AFC in Bay County was made to relieve their
mother of the stress of caring for him. They hoped that it would help her in dealing with
her own health problems. They had to move him to a nursing home in Saginaw County
when the AFC could not meet his care needs. Nancy was not satisfied with the quality of
care in the nursing home and was able to move him into the county medical facility. She
tried to visit during meal time so she could feed him and assist in his care. Pete and Sam
also visited regularly, although not as often as Nancy.

Decision-Making Patterns in the Green Famin

Table 4.6 compares elements of the conceptual map with family decision-making

for the Green family. Nancy described decision-making in her parents’ marriage as her

mother making all of the decisions:

“Mom made them all basically. Mom made all the decisions...Mother was
ruler of the roost...what Mom said went.”

She saw the opposite in her own marriage where she would rather have her husband make
decisions. However, most of the time they discuss decisions and come to a mutual

agreement:

110

.0 Illlil I IIJ‘II' III... >£ :‘INIIlt-x‘ Ilitflll ‘tl II IV. I I l .I l I III‘?‘ 1 II I‘ '\ F‘I‘Ii.-t

383 u m

5382 we 536m 8&3 n Ema.

6.882 n 2

55 Co .858 u Om

~AUEOU< .«O uOBOnm —fl0§2 H “01—!

 

 

 

 

 

052 <2 "A
885
.8583 02885 052 <2 “2
68: 8.8608 85.528 5:98
.6 0.80 88% 3.588 53:82 .58586
58586 .883 55850 28$ 0.80 .5 3:50 b_.8=8_m :65 56a :5 £85806
2:550 wage 66% a. 58:85 580: 8.8522 oEom 608858 5522 ”Om 668%
8:86 58:86 :65 56—. “m
0.5 :8 $20 555858
828 8.8608 698.5 ~06:on a. 058 865m 58586 55 “£2. ”2
53850 326% Back 608nm 856:8
a. 58:86 “5.650 55850 5:98 865m £28386 :6; 56—. .0285
26:50 a. 306m a. 58585 562.— 98602 8:86 858% .25: E 8602 ”Om Bum
052 858606 685 52. ”m
36:55 6 BE. .58586
bzfimmcoamod “”5338 mam—£8 052 55 “5% 368: :5 .5866
885 6855 2585 c6582 Rec 888 688:: .865 ”2
55850 8.853 826m 683m 28$ 0.80 .5 >550 C668.“ 35
a. 58:86 88:50 55850 6806 a. 580: 85.585650 £03 68— 558m
26:50 a. 306m 6 58:85 56:86 8.8532 52 858606 0688 8:52 ”Cm .1382...
2538a use—«E 233,..—
«aoswomasm 2.58:0 58.qu £38.,— 8850 «5:50 3:25:— 9562 .53qu 5....—

 

 

 

 

 

 

 

 

bmaam 59.0 2: 3 mac—82 538a— »:Eah 5:» .82 8:58.50 .6 3.889% .6 53.8950 < - e... «38,—.

111

“Actually when it comes to something really major, I’d say probably 95
percent of time we are in agreement.”

Once in a while Nancy will say that something has to be a certain way, but she is
generally not very confrontational. She did not see a similarity in how she and her
siblings have made decisions for her father except for the fact that she is not
confrontational, much like her father. Nancy recalled that she and her husband discussed
parenting decisions, but had some disagreements in raising their daughter, primarily
because her family was more strict. However, as their daughter got older, Nancy backed
off and her husband became more strict, so the situation was reversed. She said that
when they had a disagreement, she would not talk to him for a couple of days, then they
would sit down and discuss it. She did not see any similarity to her family decision-
making with her father.

Pete recalled his mother making the decisions within the home and his father
making them outside of the home. He remembered them sitting down and talking about
decisions. He did not see them openly disagreeing and whatever the resolution was, it
took place in private. He saw the influence on decision-making with his sisters and
brother as discussion before decisions are made and nobody having total control. In his
marriage, he and his wife talk about decisions. This was how he saw himself and his
siblings approaching decisions. Pete described parental decisions as being made together
by discussing them unless only one of them was present and the decision had to be made
immediately. In those instances, the parent on the scene would make the decision and
inform the other parent of it later. This was similar to how he saw himself and his

siblings making decisions.

112

Rachel remembered her mother being the one who appeared dominant, but in
reality neither of them made a major decision without the other. She saw similarity in the
fact that they did not take decisions about their father away from her mother while she
was still alive. Rachel is divorced and single so she wrote that the question about marital
decision-making was not applicable, and she saw no influence on how she and her sister
and brothers made decisions. Rachel also wrote that the question about parental decisions
was not applicable, and there was no influence on how she and her siblings made
decisions.

Context factors that influenced family decision-making by the Green family began
with the declining health of their mother, who was the primary caregiver for their father.
While she participated in the decisions regarding care, Rachel and Nancy were the driving
force behind those decisions as their mother’s health declined. The need for more
intensive care caused a move from AFC to a nursing home. Concerns about quality of
care made the last move necessary. Nancy had both powers of attorney as a result of her
proximity to her parents when care began. She was not able to move her father into her
home since she and her husband were caring for her husband’s father. Nancy reported
being conscientious about including her siblings in decisions, and she wanted to maintain
positive relations with her siblings. This also was important for Pete and Rachel. Pete
lived about twenty miles away before their mother’s death. Now that he lives in the home
their parents built, he is close by. When he was working, he had time during the day to
assist with appointments because he worked third shift. Rachel made trips home to assist
with decisions about care when she lived in California. Now that she lives in Sicily,

distance makes it impossible to actively assist in care, but she is an important source of

113

information and support for Nancy.

All three siblings reported using extensive communication (discussion) and
reaching agreement without conflict (consensus):

Nancy: “Communication, I mean you have to really say just say what you

feel and this is what I feel is right and try to state as many reasons as I can

to support why I feel this is the proper thing to do. But having enough

sense to also listen to what they have to say, and if it makes more sense

than what I think should be done, that would be probably something that I

would have to keep in mind and be open-minded about it. And not just

because I think it should be, then that’s the right decision. I have to be

open-minded enough...to listen and say maybe she does have a point.”
While Nancy has had sole power of attorney, she reported actively seeking to include
everyone in decision-making. She did not see herself as being the one in charge, but as
acting for her siblings. She felt that they have a right to share in decision-making since
her father is their father too. Pete and Rachel agreed and saw active discussion and
agreement as characterizing the process. While Nancy handled the bulk of the
responsibility, Pete reported that he assisted with appointments and made visits. All three
mentioned safety for their father as a desired outcome. Nancy and Pete mentioned their
father’s comfort as important. Pete and Rachel saw their mother’s needs as a factor.
Nancy talked about carrying out her father’s wishes and Rachel included both of her
parents in this. Nancy expected to continue to use discussion and reaching agreement

(consensus) in future decision-making together:

Nancy: “...1 think basically we’ll be in agreement as far as anything to do
with Dad unless it’s something that one of them really can’t live with.”

Pete and Rachel were in agreement with this expectation.

114

The Hill Family
The Hill (F6) family is comprised of a brother and two sisters. Ted (F6M1) was

56 years of age and was the primary respondent. He has a master’s degree and works
full-time as a teacher. He is married to Nancy (F 5M1), and they have one adult daughter.
Ted actually initiated the contact and mentioned that his wife also would be interested in
participating with her family if it was possible. Both families were included in the study
because of the difficulty in recruitment and the opportunity to study a couple each of
whom was dealing with family decision-making for elderly parents. Circumstances
resulted in Nancy being interviewed before Ted.

Ted’s father died at age 93 in July of 2001. At the time, he had resided for seven
months at the AFC in Bay County from which the Davis family was recruited. However,
Ted actually initiated contact through the recruitment of families who were using the
adult day activity program in Bay County. Ted and his wife cared for his father in their
own home for about five years after he suffered a stroke that left him partially paralyzed
on the left side. He also had dementia. Ted had medical and legal power of attorney.
Ted’s mother suffered from osteoporosis for many years prior to her death in January of
2000. His father cared for her until he could no longer manage. For fifteen years, she had
spent at least part of the year with each of her two daughters. After her husband could not
care for her, she stayed with them full—time. Veronica was just short of her 58th birthday
when she was interviewed. She is married with two adult children. Veronica has a
master’s degree and is employed full time as a guidance counselor in Florida. Her
husband is semi-retired and works in sales part time. She shared the care of her mother

with her sister until her mother was no longer able to travel. Wendy (F 6M3), 62, is

115

married with five children. Wendy has a BS. degree and works part time as the director
of a preschool program in Alabama. Her husband is a retired college professor. Wendy’s

mother lived with them full time at the time of her death. Thus, the Hill family had

completed caregiving for both of their biological parents.

Hill Famin Decision-Making Experiences with Elder Care

 

The Hill family was faced with parent care decisions for both of their parents. As
mentioned earlier, Veronica and Wendy began caring for their mother on a part-time basis
many years prior to her death in 2000. They assumed this responsibility full-time when
their father could no longer care for her. Ted began caring for his father after his stroke.
About a month before, his father had signed papers for Ted to have medical and legal
power of attorney. This was done at Wendy’s urging after their experience with their
mother. Ted was the only sibling in Michigan and was taking care of their father, so it
made sense that he would have power of attorney:

Ted: “I think just for the fact that I was present, physically here in

Michigan while they were in Alabama and Florida and they had the power

of attorney for Mother....There was never any problem with that. They felt

that I would be the best one to do it.”

Decisions were made regarding the use of help in caring for their father in Ted and
Nancy’s home, the use of an adult day activity program, and their father’s placement at
the AFC in Bay County. In each case, the sisters encouraged Ted ahead of time to use
these resources, but it took some time before he did so. Thus, they reported no
disagreements from them, just relief that some of the stress Ted and Nancy were feeling

was alleviated. All three siblings engaged in regular telephone contact with each other

regarding the care of both of their parents. In addition, they made it a point to visit

116

regularly. Ted summarized this as follows:

“...we constantly kept in contact by phone and back and forth, and as I

said, twice before both sisters flew in and visited my father. They also

went out to visit almost a half a year before he was at [the AFC]. They

came and I took them around at least and showed them the facility and

tried to come to some agreement, at least, whether this was the place we

felt comfortable or not.”

The safety and comfort of their father were a primary concern for the Hills. In
addition, both Wendy and Veronica were concerned about Ted and Nancy’s health and
the stress on their relationship. The decision to have someone stay with their father was
made because he could not be left alone. Ted decided to do this because he was not ready
to have his father placed in care. Later he was convinced to try the adult day activity
program and found that it was ideal for him and Nancy and his father:

“Greatest decision I ever made. Cried tears flowing down my face the last

day I had to think of my father there, because then I had to take him to [the

AFC]. I think that’s when they made the suggestion, well why don’t you

try asking if there was some way we could have both of the same worlds.

And if it would be possible, I could make arrangements and still bring him

over here...they agreed at [the day program]. So I felt great...I still wanted

him to keep that contact with them because he had really made some

fi'iends over there.”
The day program afforded his father some socialization and gave Ted and Nancy time to
get tasks done or to have time to themselves. The decision to place his father in the AFC
was made after Ted’s father hit him. Ted was concerned about his father’s
aggressiveness and his wandering at night.
Decision-Making Patterns in the Hill Famin

Table 4.7 shows decision-making by the Hill family. Ted recalled his parents

making joint decisions, but he could not remember any discussions between them. He

stated:

117

385 u m

>888< mo 83cm Ems n Emma...

35: u 2 :85 8o .85 u 8
m88o=< .8 830m .8582 u 53...

 

 

 

 

 

:28 a. 652: ~88 88:88 55 as. ”m
.«o 8.8... 583 850.5 85 8886
35588832 3885 £25 888 on on. 888885
838.88 588m .852 do 58,—. co 82% 8:02 8oE 88—8 .383 “2
£85 85“.: a. 558: 8:888:00 mm88>888ww<
<2 8.552 8% 58.2. 8% 8.8885 558: 88:89 252 888885 38 85am ”Om >883
282 828958 888 mm: 8808> ”A
€855 um 85o8
.8 88 53c 8589 8.“ 8895 8:85 8083.85 5.5, 88—. ”2
.352 a BB 3:588QO 8:38
to 828 88,—. 588m .352 Q 58.2. no 885 .8558 898 $5883
985 .85“: .8588 8:88:00 mmoco>_mmo._ww< 858 .8502 .880: 855
<2 a. bowam a. 8828me 5:8: wag—oun— 802 808885 838 8582 "Oh moms—08>
.8585 8088385 58» 88—. ”m
9855 a. .8508
.8 83 536 8888 805 tomasm 35:88 828358 888 was 3:
859888832 58888 a. 88:. 880m on :5 608885 5.5, «82. ”2
8588 “a bomam 588m 8883888wa
385 85s.: .88 .8 8>2 msmcomnov a. w885§3 808885
<2 5=Ba=§< a. 88885 5:8: 9:835 8:85 8n =82 Ho: 805 8n 88—. ”On L8H...
28882— 8232 8.38am
82:83.5 8888O 88.85 .388..— 8380 89.80 3.85.8— 833: 8882— net.—

 

 

 

 

 

 

 

 

.EEam E: 85 .3 ”Ev—«2 .3888: .585— 5; 82 8:83.30 .8 3.8885 .8 naming—8°C < . he 835,—.

118

“...my mother and father working together...whatever they felt was
necessary at the time, that’s what they did...”

Ted indicated that he had a lot of freedom to make his own decisions. He saw a similarity
in general terms with how he and his sisters made decisions. When his parents had a
disagreement, it was not openly discussed, but there would be tension for several days.
He did not know how these situations were resolved or if they were resolved. Ted said
that he would like to think that things are fifty-fifty with him and Nancy. However, he
thought that it was not that way with their decisions about his father. Ted felt that he kept
taking on more, while Nancy expressed concern that he was getting overloaded:

“I would like to think that we are making them fifty-fifty at times as far as

with my dad...I probably forced more on [Nancy] than what she probably

was willing. She put up with like quite a bit. That’s my feeling. It was

different though. I guess that was more of a major decision. Also, how far

can I go, and I felt I can do okay and [Nancy] kept saying, ‘well I think

you’re going to rupture....”’
Ted saw their disagreements as being resolved by talking them out. He felt that he and
Nancy made decisions jointly as parents. He stated that their child was a great daughter
so they did not have as many decisions to make. He saw a parallel in how he and his
sisters made decisions regarding the care of their parents.

Veronica remembered her father making all of the decisions when he was around.
She said that the differences in the ages of herself and her siblings meant that they kind of
grew up in three different households. She recalled that her father was gone a lot, so her
mother made the child-rearing decisions. She felt that she and her siblings were able to
work together on decisions because they were close growing up and did not have any real

conflicts. They have a lot of love and respect for each other. She also described how the

family was ostracized by her parents’ families because her mother was Catholic and her

119

father was Christian Scientist. The siblings felt that they needed to show that they were
worthy by being good kids.

Veronica and her husband make decisions together. In child-rearing she was more
in control, in part because of her background in education. When they had arguments
earlier in their marriage, she would shout and her husband would be quiet and leave. She
felt that they have matured, but she still tends to be verbal and he is silent. In terms of
similarity between decisions in her marriage and those with her siblings, Veronica
thought that she spoke up more with her husband than with her sister and brother. She
tended to step back more with her sister and brother, but she did not disagree with them.

Wendy recalled that her father made the decisions, but they were well aware of it
when her mother did not agree. She did not think that these disagreements were resolved.
The only similarity she saw with how she and her siblings made decisions was that she
could be more authoritarian in deciding, if she felt strongly about something. She saw the
situation as one in which she and her brother and sister wanted to avoid problems, and
tried to keep things low-key. Wendy thought that she steps up more than her husband
when it comes to making decisiOns as a couple. She did not see any similarity with how
she and her siblings made decisions. Wendy stated that she and her husband worked
together on decisions regarding their children. She saw the same thing with her siblings
in terms of working together.

Context factors for the Hill family included the situation when their father initially
moved in with Ted’s family after a fire at his home. This arrangement became permanent
as a result of their father’s stroke and developing dementia. Since he and his wife both

worked, Ted had a caregiver come into his home. Later Ted began to use a day activity

120

program to relieve their elderly caregiver and to give him and his wife some respite. This
was encouraged by Veronica and Wendy. They also encouraged the move to the AFC
because they were concerned about their father’s aggressiveness and the stress on Ted and
Nancy. Ted made the move to the AFC in response to his father’s wandering at night and
his aggressiveness. All three mentioned aspects of maintaining a positive, supportive
relationship with each other as important.

Family decision-making procedures were described in a consistent pattern by all
three siblings. They made reference to regular communication and keeping each other
informed:

Ted: “ ...I think the communications that we have is not just something

just because of my father and my mother. It’s been something there all the

way through our life. Even growing up, even though there is quite an age

difference, and I’m the youngest of the three of them. I think we have had

good communication all the way through....I have always made it a point,

ever since my sisters moved out of Michigan, to try to keep a close family

contact...”

They all reported agreement on decisions about caregiving. In fact, Veronica and Wendy
encouraged Ted to use the activity program and the AFC before he actually did so. The
three of them shared responsibility for the care of their parents by the sisters sharing care
of their mother for many years before their father required care. Ted then stepped in and
handled the care of his father. Ted and Veronica saw safety and comfort for their father
as important outcomes. Ted discussed the need to have a certain level of care available.

The sisters were concerned about the health of Ted and Nancy and their marriage. Since

their father had died, questions about subsequent decision-making were not applicable.

121

 

Summary of Family Decision-Making Experiences with Elder Cm

Each family made a unique set of decisions, and each developed a slightly
different process for doing so. All of the families reported a very consistent pattern in
their decision-making processes as they progressed through various stages of elder care.
Thus, decision-making patterns are presented for each family as a whole, rather than
presenting each decision separately.

All of the family members described ongoing communication and discussion as
the key to their success in making decisions. This appeared to make everyone feel
involved, even when they did not have power of attorney or did not live close to their
parent. In addition, all of the families described ways that they shared some of the
responsibilities or were at least available as a support system for those who live in the
area. Figure 4.1 depicts the patterns of interaction for family decision-making for each
family. These are displayed together to illustrate similarities and differences. Medical
and financial powers of attorney are noted. A higher level in the illustration indicates
greater power or influence. Some family members had more influence as a result of
specialized knowledge, age, or geographical proximity. All of the families reported little

if any assistance from professionals.

Summafl of Family Decision-Making Patterns

The conceptual map for this study (Figure 1.3, page 26) was constructed using
several theories about family decision-making (Table 1.1, page 14). The original
conceptual map reflects how evaluation and perception of prior decision-making by

family members could influence the current context factors, family decision-making, and

122

Adams Family Baker Family

 

 

 

 

 

 

 

Eric* ‘— """""""
*Ann* , \ F?”

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Ben ( ) Carl
Greg
Cook Family Davis Family
*Hannah Karen“ *Larry* *Meg* I
Jan
Green Family Hill Family
*——— *Ted*
*Nancy* ‘8 ’ Rachel
/'

Veronica ‘———-) Wendy

 

 

 

 

 

 

 

Pt
/1 cc

 

Sam

 

 

 

*On left = Medical Power of Attorney
*On Right = Financial Power of Attorney

Figure 4.1 - Patterns of Interaction for Family Decision Making for Each Family

123

the desired outcome. Current context factors could affect how family members evaluate
and perceive prior decision—making. These factors also were seen as influencing family
decision-making and the desired outcome. The degree to which the desired outcome was
achieved was seen as influencing subsequent decision-making.

Prior experiences with decision-making occur in the family of origin, in marriage,
and as parents. Prior decision-making experiences explored in this study included
decision-making by parents of the participants (family of origin) and decision-making by
participants in their marriage and in the parenting process, if they are married and if they
have children. The influence on past, current, and fiiture family elder care decisions as
perceived by the participants is discussed.

Potential current context factors were depicted in the Theoretical and Conceptual
Maps (see Figures 1.2 and 1.3 on pages 13 and 26). However, this study was too small
for these factors to be a major focus. Instead, current context factors were studied and
reported for further study. The responses of participants were summarized and coded.
The primary categories of responses were found to be health of both caregiver and parent,
functioning of parent, the ability to provide family care, emergency changes in care,
availability of care, quality of care issues, costs and financial resources, sibling
relationships, and time, distance, and proximity. These last three categories were
especially important influences on whether family care was feasible, who had power of
attorney, and who provided what assistance.

The family decision-making procedures that were studied were conflict,
consensus, discussion, negotiation, change, and power. Shared responsibility was added

because it appeared as an important aspect to which all of the families referred during the

124

interviews. The desired outcome in the conceptual map was related to maintaining
quality of life for the family, including the elderly parent. Desired outcomes described by
participants were summarized and coded. The categories that emerged were safety and
comfort for the parent, the need for services (e.g., supervision, socialization, activities),
the ability to afford care (affordable), convenience (location), quality of care (e.g.,
atmosphere, trained staff), caregiver concerns (e. g., stress, health), and carrying out the
wishes of the parent. Subsequent decision-making included family decision-making by.
the siblings and decision-making in relevant areas, such as their marriage and their
parenting. Both prior and new experiences also were seen as influencing subsequent
decisions in the conceptual map.

Tables 4.2 through 4.7 displayed summaries for each family of member responses
to each element of the conceptual map. The tables illustrated: (1) the influence of prior
decision-making on family decision-making for these families; (2) the relevant current
context factors; (3) family decision-making processes used by these families; (4) the
outcomes the families hoped to achieve and how these related to quality of life for
themselves and their parent; and (5) the influence families perceived these experiences
would have on their subsequent decision-making. An analysis of these elements was

included for each family.

Revised Conceptual Map

Revision of the conceptual map is an important aspect of this study. In the
methodology section of Chapter Three, the use of a combination of pattern matching and

analytic induction was discussed. It was pointed out that both pattern matching and

125

analytic induction use a conceptual model based on previous research and theory. In
pattern matching a standardized method is used for data collection, and the model is
changed when data analysis is completed. The method of data collection is not
standardized in analytic induction. It changes with variations in the data, and patterns are
used to change the conceptual map as they emerge. This study used a combination of
pattern matching and analytic induction in that data were collected using a semi-
structured interview guide to allow for a more conversational style of interviewing.
Follow-up questions were asked. An analytic induction method was used to allow
latitude and flexibility in using the interview guide. Pattern matching was used to
identify patterns that supported the original conceptual map and a revised conceptual map
was constructed.
Description of Revised Conceptual Map

Figure 4.2 is the original conceptual map and Figure 4.3 is a revised conceptual
map based on the responses of members of the six families. The original map is
presented here again for purposes of comparison. The revised conceptual map represents
a summary of the findings described above. Any responses described in these findings in
support of the original conceptual map are included in the revised map. Table 4.8
describes the sources for the revised conceptual map. Additions to the revised map that
reflect the data are listed under “Yanca.” The narrative that follows explains how the
responses supported the revised conceptual map.
Changes in the Structure of the Conceptual Map. The double arrow between “Evaluation
of Prior Decision-Making” and “Current Context Factors” was changed to a single arrow

because there was no evidence found in this study that would indicate that current context

126

«5.888: 80.: Matchsm 3:08am 282nm .8. wan—«2-88809 .585— ..0 as: Ragga—SD < - Na. 28E

 

 

moccotoaxm 382
moocotoaxm 808m
230-8852
3832

580 8 been
wan—«2
$08.00:
82:83.5

 

 

855 888 8:622:

8:5 8 a: 8 3:80
. 0808.5

 

 

 

 

. A

 

 

830m .09..an A

 

808.5032 £08385
£88800 com—.800
«fiazéefiuon .5802

 

 

 

9.08am 80800 89.80

 

 

 

 

2:20-823
8:82

280 80 £58
mafia—2-8883—
..0tm ..0
gag—gm

 

 

127

«3:089: Ea...— ufiuousm $5.8.— buoEH .8.— wafia—zéagoon man—ah .3 .32 3:33.30 63.33— - n... 95w“..—

 

230-383
32.82

mew—«2
8389 bung
mac—«2

 

 

A{

 

 

$83609 A
Ema—53.5

 

 

 

@085 a. 839m c295
£35300 £23385

mafiazécmfluo: baa...—

 

 

 

 

 

255 :55
9:335
éaé go

a: mo 9:30

2:325

\

Efiacamom A

 

BEDéBSA
.352

5ch ‘8 38$
wan—«2-5360:
.8: no
smug—«5—

 

 

 

 

358?? $53 We 3.30

/

 

080 mo 3:85 Scam 2.8280
383‘ EBEEE mo b=5m=a><
338 Mo £5232

0.80 E momuano mocuwbfim
0.50 bung 3.505 3 35.2
$833.30 mo 530E

Baum mo wficonoqsm av 530mm
9.3%..— 26230 23.:an

 

 

 

128

 

man—a2 56309 338m

 

 

“5.8“” we 3:23 £50280 83350
.080 00 3:30 .ooco_:o>:o0 .080

0338b< .mooEom go.“ 302 .523
ha 838 a. beam ”.55 32m 2:

 
 

 

383 550.8 a: ho a
I; 96 =

 

 

 

 

 

 

 

 

 

 

 

Eva—o:— EEE 05 mo £5 00 ._ 2.88:0
bzééoaum Easy,
830m 3.83m 23m 530m £23385 £35300
butcher“ 60:8me .08; .mnEmaocflum
wE—flm £3583” 3655..“ 98 $80
. 030 .«o 3:30 .980 .«o E=Ea=m>< mooSOmom £300 £02"; .332 an m £5 05 5 32m
.86 a momfiao 58955 .88 ”82552 sea a. Eases” $3 352
Egan 330$ 8 b=5< ..Bfiwobamo ow< atom £58m egocoooowoom .ohdosbm ”3:0 Eodomsom
530m Juana mo mamdouogm Q 5303 338m ”8558820 Exam 9.32M,— wxoumcU Eat—.0
«Eu—a:
3%
552 .55
«28> hwoos—cam wS:om Q 5215 39655 Q Egom

 

 

 

 

 

wig—a2 H2389 hug—8,..— uc nu: 353230 6833— .3.— moouacm - «a. 2:5.

129

factors influenced the perceptions of the respondents regarding decision-making in the
past. This possibility was considered before the data were collected. It was thought that
negative feelings, such as guilt, might influence how participants perceived prior
decision-making. For instance, a respondent might have perceived prior decision-making
in a certain way in order to rationalize the decisions that were made about elder care. If
this were the case, then one could at least expect inconsistency among the siblings with
regard to decision-making between their parents. Thus, the high level of consistency in
the descriptions of members from the same family indicated that their perceptions of prior
decision-making did not appear to be influenced by current context factors. Perhaps this
influence would have been uncovered with more specific questions about the relationship
between current context factors and perceptions of prior decision-making. However, it
was felt that this would have detracted from the primary purpose of the study.

An arrow was added from “Evaluation of Prior Decision-Making” to “Subsequent
Decision-Making.” The influence of prior decision-making appeared to be fairly strong
according to reports by the respondents. This was reflected in the number of areas that
were “similar” or “same” under “Influence” in the tables for each family (Tables 4.2 to
4.7). This will be described in greater detail later. Prior decision-making influenced the
desired outcome by the fact that one or more members of four families (Baker, Cook,
Davis, and Green) mentioned carrying out parental wishes either by hearing their parent
say what they wanted or by carrying out the plan that was made by the parent. This also
was seen as influencing the family decision-making process to the extent that members
understand what their parents’ wishes are. Thus, another arrow was added between

“Family Decision-Making” and “Subsequent Decision-Making.”

130

Prior decision-making seemed to have an influence on subsequent decision-
making according to the reports by the respondents. Participants with intact marriages or
remarriages appeared to be satisfied with their marital decision-making process, as there
was little indication of any intent to change how decisions are made. These changes in
the revised conceptual map also reflect the fact that those participants who were still in a
position of making decisions for their parent were universal in reporting their desire to
continue using discussion and consensus in subsequent decision-making situations. In
particular, those who saw a similarity between marital and family decision-making and
were faced with future family decision-making were consistent about expecting to
continue using discussion and consensus. Karen was the only participant who did not
experience any direct relationship between prior decision-making and family decision-
making. However, she reported an indirect relationship in describing her marital
decision-making as the opposite of her family decision-making. She commented that if
she and her former husband had used a similar process, they might still be married.

Taking a systemic approach, one might expect to find feedback loops running
from various elements of the map to other elements. This would especially be the case
for the influence of subsequent decision-making on various aspects of future decisions.
However, instead of feedback loops, it is assumed that current decision-making becomes
part of prior decision-making as time elapses, and subsequent decision-making becomes
the current decision-making as new situations arise. Thus, time changes the position of
each decision and will ahnost certainly change elements of the model, and perhaps the
model itself. If it is the nature of systems to change over time, then models of those

systems will also change.

131

Current Context Factors Identified by Families. “Current Context Factors” were

discussed earlier under descriptions of elder care decision-making for each family. These
were summarized and included in the revised conceptual map. Health and safety issues
and the functioning of their parent were mentioned by all of the respondents. These
factors were reported by all of the families as having an influence on the desired
outcomes. The health of the caregivers was mentioned by Ted’s two sisters, and he was
the only respondent who provided extensive family care in his home. All of the family
members were working full time, raising children, and/or living out of state at the time
that elder care began. This made it more difficult for them to provide family care in their
home. Only one local family member (Ben) had a spouse that was not employed at the
time elder care began. Ted was only able to work and provide family care by using a paid
caregiver in his home. He also used an adult day activity program for respite. The fact
that he is a teacher and his wife works 32 hours a week were important factors in having
the time available to provide family care.

For all of the respondents, time, proximity, and distance were reported to be
relevant issues in terms of the ability to provide family care and in the roles that each
member played in providing assistance, having power of attorney or guardianship, and
participating in carrying out decisions. In addition, all six families had at least one
member who is employed either in the medical or human service fields. Thus, they were
able to use the expertise of these members in acquiring knowledge and making decisions
about care. All of the respondents expressed positive feelings about the way in which
they were able to work together and reported placing a high value on positive relations

with, or support fiom, their siblings.

132

Emergency moves, availability of care at the level needed, quality of care
concerns, and the availability of financial assets were reported as important
considerations in looking at elder care experiences. The Adams and Cook families
described making decisions on an emergency basis, as circumstances forced them into
unplanned moves. This meant that they had to settle for whatever bed was available, and
they felt that they had little choice in the matter. The Baker and Davis families did
extensive planning and were able to have options available by exploring them ahead of
time. The Green family had time to explore options in their first move, but found
themselves making another move because the facility was not able to manage their
father’s care needs. The move from the AFC to nursing home care resulted in concerns
about the quality of care and led to a third move to the county medical facility. A bed
was not available there when the move to the nursing home was made. The Hill family
had placed their father’s name on the waiting list for the AFC in Bay County. His name
had come up once or twice before Ted moved his father there. None of the respondents
reported using their own assets to pay for care. Having sufficient financial assets (or a
long term care policy) on the part of the parent was apparently critical to having options
in making care decisions. The AF C’s in Saginaw and Bay Counties charged about
$3500.00 a month for a room on their memory care unit at the time of the interviews.
Decision-Making Processes Used by Families. The families recruited for this study were
intended to be those who felt they were successful in making family elder care decisions.
All of the families were consistent in reporting that they agreed with the caregiving
decisions that were made. Thus, the “Family Decision-Making” portion of the conceptual

map contains only two of the original procedures, discussion and consensus. It also

133

contains a modification of a third procedure. “Power” was changed to “shared power” to
highlight the fact that all of the families reported sharing power in making decisions, even
though powers of attorney or guardianship were held by an individual, except in the case
of the Davis family. Finally, “shared responsibility” was added as a procedure that all of
the families described in one form or another. As discussed earlier, these families
reported that they were able to find ways for each member to make a contribution to the
situation. Local family members provided the bulk of the tangible services. However,
distant members provided such things as managing financial affairs or investments,
providing information, and being a support system for their siblings. Most of them also
made trips back to Michigan to visit and to assist in plamring and/or making moves.

None of the families reported a conflict arising in their family decision-making
regarding elder care. The Cook family experienced some discomfort with the situation at
the county medical facility. However, there were no indications of any disagreement over
the original decision. Rather, concerns were raised regarding the quality of care, which
led to a decision to move to another facility. Some members of the Green family reported
concerns related to selling the family home, but they reported that this was resolved
before a disagreement arose. None of the participants described any procedures that
could be coded as negotiation or change.

The combination of on-going communication (discussion) along with sharing
power and responsibility seems to be the key for these families in reaching agreement
(consensus) regarding decisions for their parents. Half of the families either split the two
powers of attorney (Baker) or guardianship and conservatorship (Cook) or had joint

power of attorney (Davis). The other three had sole power of attorney in the hands of one

134

sibling, but those who were appointed expressed a strong desire to share that power with
their siblings. The reasoning behind this generally had to do with feeling an ethical
responsibility to include all of the siblings in these decisions and not wanting to be left
alone in making and carrying out the decisions. Most participants reported feeling that it
was important to work together and to reach an agreement without undermining their
positive relationship with each other.

Qutcomes Desired by Families. According to the respondents, there was strong support

 

for outcomes reflecting a desire for good quality of life for the parent. All of the
respondents mentioned safety as a primary consideration in decisions about care. Fifieen
mentioned comfort, atmosphere, or socialization as desired outcomes. Three specifically
talked about having a convenient location, although all of the local family members
selected facilities in their community. Four respondents expressed concern about the
needs of the caregivers. It is not entirely clear the extent to which outcomes would
influence subsequent decision-making. However, it is logical to assume that if the family
decision-making process resulted 'in the desired outcome, family members would want to
continue using that process. On the other hand, if the process resulted in something other
than the desired outcome, family members would have either experienced conflict or they
would have sought to change the process by which decisions were reached.

Subsequent Decision-Making. Decisions from the farme of origin, prior experiences,
and new experiences were left out of the revised conceptual map for “Subsequent
Decision-Making.” There was no evidence that these were factors involved in subsequent
decision-making. Family decision-making was added because there was strong support

for subsequent family decision-making regarding elder care being influenced by prior

135

decision-making and by family decision-making experiences.
Influence of Prior Decision-Making on Family Decision-Making

According to the respondents, decision-making in the family of origin by the
participants’ parents provided the least amount of influence from prior decision-making.
There were some differences in recollections among the members of several families.
Some of these differences may have reflected the long period of time since these
situations were experienced and the fact that the participants would have been children
and teenagers. Some differences may have been a result of age gaps between older and
younger members of the family.

As noted earlier, there was a discrepancy in the description of decision-making in
the family of origin for the Adams family. However, Ann qualified her description by
saying that her mother “probably” made most of the decisions. Ann also stated that she
was gone most of the time beginning at age nine, when she began working as a babysitter.
Carl seemed to feel that his parents might have been different when he was growing up
since he is fifteen years younger than his brother. Ben and Carl both felt that decisions
were made jointly by their parents with discussion.

In the Baker family, Eric could not recall how his parents made decisions. His
sisters agreed that their father made the major decisions. All three felt that their decision-
making was similar to their father’s in terms of planning ahead. No one in the Cook
family saw any similarity with their parents’ decision-making.

The Davis siblings were raised by their widowed mother. There was some
discrepancy in both the Green and the Hill families in the perception of decision-making

by the participants’ parents and in the perception of similarity with family decision-

136

making. Nancy recalled that her mother made the decisions and her father was “laid
back.” She saw a similarity between herself and her father in being non-confiontational.
Pete on the other hand remembered his parents’ decision-making as joint, but also said
that his mother made decisions in the home and his father outside of the home. Rachel
was actually in between these two perceptions, reporting that her mother appeared to be
dominant, but that her parents actually used discussion and joint decision-making. For
the Hill family, Veronica saw her father as dominant when he was home, and her mother
made decisions regarding the children. Wendy saw her father as making the decisions.
Ted thought his parents’ decisions were joint, but did not recall any discussion.

Only five participants (Ben, Carl, Pete, Rachel, and Ted) saw a similarity between
decision-making by their parents and that which they and their siblings used. Seven saw
no similarity (Ann, Hannah, Jan, Karen, Meg, Veronica, and Wendy). The rest saw some
similarity in how one of the parents approached decisions in the use of planning (the
Baker family), keeping records and investigating (Larry), and being non-confrontational
(N ancy).

Most of the similarity between family elder care decision-making among siblings
and prior experiences with decision-making was reported with marital decisions.
Fourteen of the participants were married, remarried, or widowed. Twelve of these saw
similarity between their marital decision-making and their family decision-making. The
other two participants (Nancy and Wendy) did not see a similarity. The two participants
who are divorced and have not remarried (Karen and Rachel) saw no similarity and as
mentioned, Karen saw her marital decisions as the opposite.

Parental decisions also were reported as similar to family decision-making, but

137

not to the extent of marital decision-making. Fourteen participants have children.

Rachel, who is divorced, did not respond to the question about how she and her husband
made decisions as parents, but indicated that there was no similarity with family decision-
making. Eight participants (Carl, Donna, Fran, Hannah, Meg, Pete, Ted, and Wendy) saw
similarity and five (Ann, Jan, Larry, Nancy, and Veronica) saw no similarity. Two of
these latter participants are mothers who reported that they made the parenting decisions
and one (Larry) reported that his wife did so. The other participant (Jan) described
parenting decisions as joint with discussion, but she did not see how this influenced
family decision-making. Thus, according to reports by respondents, the strongest support
for prior decision-making influencing family elder care decision-making came from
marital decision-making. They reported parental decision-making as having an influence,

but it was not as strong as marital.

Summary of Findings

The six families studied were predominantly middle class. Most had intact
marriages or successful remarriages. Most were well-educated and had professional or
“white collar” occupations. All six families had at least one member with a background
in the medical or human services area. Half were making decisions for their father and
half for their mother.

The interview data indicated that these families were in various stages of their
caregiving experience. The Cook and Hill families had both parents deceased and had
completed caregiving for their biological parents. The Green family described their father

as totally incapacitated and bed-ridden. He could not feed himself or assist in any of his

138

care. Thus, they were in the very last stages of caregiving. The Baker family’s father was
ambulatory, but needed assistance with the rest of his care. He was still feeding himself,
but was beginning to have difficulty. He was also beginning to show signs of difficulty
with ambulation. So, he was entering the later stages of care. Both the Adams and the
Davis families appeared to be in the middle stages of care. Their mothers were
ambulatory with walkers and were able to feed themselves. They needed assistance with
dressing and personal hygiene.

The families recruited for this study were self-identified as being successful in
family decision-making regarding various aspects of elder care. The findings indicated
that all six families were very successful in working together and making decisions. The
participants reported regular communication and discussion and reaching consensus as
the procedures they used in reaching decisions. There were no indications of negotiation
or changing positions because they did not report experiencing conflict. They either
talked things out ahead of time or had limited options due to the need to move their
parent quickly. Most respondents identified maintaining good relations with their
siblings as important. Power was shared either formally or informally. Formal power
sharing occurred in half the families. One split the powers of attorney between two
members, one split guardianship and conservatorship, and one family had joint powers of
attorney. The other three families had one member with both powers of attorney, but
those members reported going out of their way to include their siblings in making
decisions, and this was confirmed by their siblings. Each family member found a way to
make a contribution to the responsibilities either directly or indirectly. While

responsibilities were not equally shared, the contribution of those with less responsibility

139

was valued by those with more.

Important context factors that emerged from reports by the respondents included
factors related to the parent, factors related to the elder care situation, and factors related
to the ability to provide family care. Health, safety, and level of functioning of the parent
were mentioned by all of the respondents. Factors related to the elder care situation
included emergency changes in care, the availability of options, financial assets, concerns
about the quality of care, and the desire to maintain positive relationships with siblings.
Factors related to the ability to provide family care included concerns about the health
and well being of the caregivers, the time available for caregiving, and distance from or
proximity to the parent. Employment and child rearing appeared to be important factors
in the availability of time. Those family members who did not live in the area were all
living out of state, with the closest being 700 miles away. All family members living in
the area reported participating in decision-making and some aspect of care, but all were
employed or engaged in child-rearing or both.

Most family members reported expected outcomes that were focused on the safety
and comfort of the parent. A few expressed a concern for the needs of caregivers or the
fact that the location was convenient. Several mentioned a desire to carry out their
parents’ wishes.

The responses of the participants indicated strong support for the influence of
prior decision-making experiences on family decision-making regarding elder care. The
strongest influence was reported from experiences with shared decision-making as
spouses in successfirl marriages. Some influence also was indicated from experiences

with making decisions as a parent. Decision-making by participants’ parents (family of

140

origin) was seen as having the least influence. Most of this influence was related to the
actions of individual parents in planning ahead. Thus, there was not clear support for the
development of a family pattern regarding family decision-making. Instead, it appeared
that these family members used experiences in their adult relationships (marital and
parental) as models for working together with their siblings.

All respondents expressed satisfaction with the process that they used with their
siblings. Those who were in a position to make decisions in the future expected to

continue using discussion and consensus.

141

CHAPTER FIVE

DISCUSSION

This study offered good support for the methodology that was used and answered
a number of the research questions posed. The first part of this discussion is focused on
the design and methodology of this study. This is followed by a discussion of
demographic data and the three sets of research questions: descriptive, interpretive, and
theoretical. Reflections, implications, and conclusion make up the final three sections.
Discussion of Design and Methodology

A number of findings supported the study design and methodology. Theory
triangulation resulted in support for a revised conceptual map that reflected elements of
the three main theories used to construct the original conceptual map. Method
triangulation yielded a high level of consistency of responses within families regardless of
whether the interviews were in person, by telephone, or by e-mail. Data triangulation was,
accomplished by interviewing all or most members of each family and by using families
that had different experiences with the use of various forms of care and were at different
stages of their caregiving experience. Thus, triangulation accomplished the purpose of
increased validity while also providing more richness to the material.

Table 4.8 identified sources for the revised conceptual map. In terms of theory
triangulation, the findings supported the use of elements of the three theories from Bubolz
and Sontag (1993), Paolucci, Hall, and Axinn, (1977), and Scanzoni and Szinovacz
(1980). The greatest support was for the use of Scanzoni and Szinovacz’s theory. This

would be expected since their theory was the foundation for the decision-making

142

component of this study. The modified version of Paolucci, Hall, and Axinn’s (197 7)
chain theory as the basic structure for the original map also was supported.

Only a small portion of Bubolz and Sontag’s (1993) theory was used in the
original map (see Family Decision-Making, Quality of Life, and Quality of Life of other
Humans on Theoretical Map, Figure 1.2, page 13). The findings showed strong support
for the families’ desires to maintain an acceptable quality of life for their parent and some
support for their concern about quality of life for caregivers. The adult sons and
daughters alluded to quality of life issues for their own families when they discussed
reasons family care was not available (employment and/or raising children). Several of
the context factors described by the families, along with the demographic data, could be
summarized under “Family Characteristics” and “Individual Characteristics” from Bubolz
and Sontag’s (1993) theory in Table 1.1 (Theoretical Map). The successful use of theory
triangulation increases confidence in the data, the analysis, and the findings of this study.

The use of multiple methods was the second form of triangulation. The
consistency in the responses of family members was very high. Family members
consistently validated the descriptions by primary respondents of family elder care
decision-making along with other aspects of the caregiving experience. There was less
validation of perceptions of decision-making by parents in the family of origin. However,
the passage of time and the age disparity between siblings in several families may account
for some of these discrepancies. Overall, these frndings were consistent with Fisher and
Lieberman’s (1996) finding of moderate correlations for family appraisals between
offspring and in-laws.

There were no discemable differences in the content and the quality of the data

143

that were collected in person, by telephone, and by e-mail. There were, however, two
differences in the email response. First, the responses were generally shorter than those
given in person and by telephone. This may be due to the greater time and effort required
in typing responses. It also may be due to the fact that the interview guide was
preforrnatted to specifically address the types of decisions that had been identified by the
primary respondent. In addition, follow-up questions were not used as they were with the
more conversational style of the other interviews. The second difference was that all of
the questions were more likely to be covered directly in the e-mail interview. The use of
the interview guide and a conversational style for in-person and telephone interviews led
to some questions being answered through discussion rather than separated into distinct
responses. In some cases, the actual question was not asked because it would have been
redundant. For some interviews, one or two of the minor questions were overlooked.

The mixture of modified versions of analytic induction, pattern matching, and
grounded theory as methodological strategies also was beneficial. This was a second
form of method triangulation. As in analytic induction, the use of an interview guide with
open questions and a conversational style meant that data collection was not standardized.
In pattern matching the conceptual map is changed only after the data are collected and
patterns are noted. This was the approach used in this study, and it yielded substantial
support for many components of the original conceptual map. In terms of grounded
theory, findings supported key elements of the three theories that were included in the
conceptual map. In addition, the consistency in the responses of family members
indicated that the data collected were exhaustive for these families.

Data triangulation was accomplished by using multiple sources in each of the

144

families and by using families that had a variety of experiences with using various forms
of elder care. Families had made decisions about the use of family care, adult day care,
corporate and family-based AF C’s, assisted living, nursing homes, and county medical
facilities. They also had to make financial and medical decisions. Two families who
have completed care were included with families who were still involved in making elder
care decisions. A marital couple with two different family experiences was included.
Thus, there was a rich cross-section of experiences represented.

As discussed in Chapter Three, investigator triangulation could not be included.
However, the remarkable consistency of both intra-family and inter-family responses
made it less likely that investigator bias would skew the findings. In addition, the
exploratory nature of the study means that the findings are not intended to prove
something or to be generalized, but to discover what is happening in families that are
successful in making elder care decisions. The use of other forms of triangulation also

compensated for the lack of investigator triangulation.

Discussion of Demographic Findings

Five of the six families in this study used powers of attorney to execute decisions
for their elderly parent. The one family with guardianship and conservatorship did so as a
result of the sudden death of their father, who had been caring for their mother. She lived
less than a year after his death. The use of power of attorney gave these families much
more flexibility and leeway in making decisions. Guardianship and conservatorship
require court involvement and oversight, with extensive reporting and limits on

independent decision-making. The result is a much more formal system with

145

accountability primarily to the court. This more formal process may be necessary in
situations involving conflict in the family, but it could be restrictive for families who are
able to work together. Exercising power of attorney does not require this formality.
These families could exercise decision-making power among themselves and were
essentially accountable to each other and their own consciences.

Only one family member lived in the area and did not work full-time. However,
she worked part—time and was raising children. Only one family member used family
care to any extent, and he hired a caregiver to come into his home and later used adult day
care. He was the only family member who reported any change in living arrangements.
Other families used paid care in the parent’s home for varying lengths of time. All of the
families eventually used residential or nursing home care. None of the respondents
reported a substantial change in their work schedule. Checkovich and Stern (2002) found
that full-time employment and distance were significant factors in decisions about how
much care to provide. Earlier, Wolf and Soldo (1992) found no evidence of reduced
propensities to be employed or changes in work schedules for married women due to the
provision of parental care. At the same time, studies by Moen, Robinson, and Fields
(1994) and Robison, Moen, and Dempster-McClain (1995) found no evidence that
increased work force participation by women decreased caregiving responsibilities.

All of these family members were middle class, and most have levels of education
beyond high school. Checkovich and Stern (2002) found that a higher level of education
by the parent was related to less care being provided and was apparently related to greater
financial resources. Statements from several family members indicated that the

availability of financial resources made it easier to reach decisions to use elder care. This

146

also is consistent with Goldscheider and Lawton (1998) who found having a college
education had a negative effect on support for co-residence with an aging parent. At the
same time, they found that college-educated parents were just as willing to help their
children as were those less educated. The authors saw this as supporting Caldwell’s
(1982) wealth-flows transition argument in which family members who were more
educated were expected to be in the forefront of this transition. They were expected to
invest more strongly in their children than in their aging parents. However, this study did
not necessarily support Goldscheider and Lawton’s view. Instead, it appears that
affluence, the availability of parental assets, and parental wishes were strong influences
on the decision to use paid care as opposed to co-residence.

The size of the sibling group did not seem to influence the decision-making
process itself, although one family with four siblings had a member who did not
participate. The other family with four siblings had a member who declined to participate
in the study, but was involved in family decision-making. In addition, while the
impairment of the parent was a factor in deciding to place the parent in a residential
setting, it did not seem to change the decision-making process. This is similar to
Smerglia and Deimling’s ( 1997) findings that the size of helping or decision-making
networks was not an important factor in decisions about care, nor was the level of
dependence and cognitive impairment of the care receiver.

For participating families, three members were born in the 1930's, nine in the
1940's, six in the 1950's and one in 1960. Thirteen out of the nineteen were born between
the end of World War II and 1960. Pe0ple born during this period are often referred to as

“baby boomers.” At least one member of every family is in this group. Thus, the sample

147

represents a glimpse into how this large generation might be coping with elder care
decisions.

An interesting demographic was the fact that all six families had parents who had
intact marriages with an average number of offspring just over three. For the seventeen
respondents, there was an average of two offspring. Three had no children, three others
had one, and five had two. This means that over one third of these respondents will either
have no offspring to care for them or only one. Almost two out of three will have two
offspring or less. For these families, if one of the spouses develops an impairment, the
potential for caregiver burden for their offspring will be greatly increased unless a cure
for various forms of dementia can be found.

The effects of parental divorce on elder care decision-making was not a factor
since there were no divorces or remaniages for the elderly parents. This was different
than the findings of Allen, Blieszner, Roberto, F arnsworth, and Wilcox (1999). In their
sample, one-third of older adults and over three-fourths of their adult children had
experienced pluralism in family structure, including divorce, remaniage, single-
parenthood, non-marital parenthood, and long-term cohabitation. In this study, there
were no divorces among the care receivers. There were no divorces for twelve of the
sixteen participants who had married, and only one divorce for each of the other four
participants. The great majority of participants had experienced conventional family
structures with intact marriages. The effects of pluralism on family decision-making was
reduced in this study since the majority of respondents had experienced conventional
family structures. Increases in the rates of divorce and remarriage in society mean more

uncertainty for the future of family care and decision-making.

148

Discussion of Descriptive Findings

This portion of the discussion will focus on the descriptive research questions
listed in Chapter Three. The primary areas covered by these questions are summarized
as: 1) how selected families make elder care decisions; 2) contextual factors that
influence decisions; 3) expected outcomes; and 4) helpful and difficult circumstances.
Management of conflicts or disagreements is included under the first section and in the
findings in Chapter Four.

How Selected gmilies Make Elder Care Decisions

The description of family decision-making procedures by respondents indicated
that these families were successful at making elder care decisions because they used a
strong, ongoing communication system to keep each other both informed about, and
included in, decision-making. This developed into an ability to discuss the situation at
hand and reach an agreement or consensus. In some cases it also led to planning for
future decisions. This was consistent with Lieberman and Fisher (1999) who found that
families that used positive conflict resolution methods provided significantly more help
than families that did not. The families in this study seemed to place a high value on
working together and on preserving positive sibling relations. In some cases, motivations
for doing this were highly altruistic. For instance, two of the participants discussed the
fact that they felt it was only fair to include their siblings because the parent was a mother
or father to each of them. Most said that it was critical to have assistance in making these
decisions and carrying them out together because it would be overwhelming to do so on
their own. A study by Dwyer, Henretta, Coward, and Barton (1992) concluded that

cooperation among siblings was an important factor in the initiation and continuation of

149

help by offspring. Mittelman, Ferris, Shuhnan, Steinberg, and Levin (1996) found that
cooperation within the family system was important in diminishing the negative aspects
of caregiving while enhancing the positive, supportive aspects.

All of the participants expressed appreciation and gratitude for being able to reach
an agreement about elder care and handling their parents’ affairs. They all reported being
in agreement with the caregiving decisions that were made. Even though it was intended
that the sample would be families who felt they were successful, the apparent absence of
conflict was not expected and would be very unusual. The fact that every member
reported the absence of conflict or disagreement would indicate little if any conflict was
present. Perhaps this was related to the affect around these decisions. Feelings of
concern about the parent might lead some of the participants to be relieved that their
siblings were carrying out decisions, and they did not want to create conflict. They might
feel that as long as someone takes leadership, everyone is happy, and no one wants to
create waves. It is interesting that Smerglia and Deimling (1997) found that satisfaction
with decision-making was related to adaptability and the absence of conflict. This
implies that it is possible for families to work together and not have conflict or manage it
in such a way that it is not considered a significant barrier in their relationships.

The families’ reports of relief at not experiencing conflict was different from the
findings of Fisher and Lieberman (1996), who found that family avoidance of conflict
was related to increased caregiver stress. Apparently the reasons for the lack of conflict
may be the important difference. In this study, family members reported managing
conflict by using extensive communication and discussion and by including other siblings

in the decision-making process. However, avoiding conflict as a means of managing

150

conflict may increase stress. This could account for the discrepancy with Fisher and
Lieberman’s findings.

These families also reported finding ways to include everyone in decision-making,
even when the powers of attorney were held by only one family member. The family
members with these powers reported making an effort to avoid unilateral decision-making
and reached out to maintain good communication with siblings. When emergency
situations arose, they may have had to act on their own. However, the family member
had either prepared the siblings ahead of time or made the decision and then kept the
siblings informed of the situation. Even when unilateral decisions were made, a sense of
shared decision—making was maintained. This also was contrary to the findings of Fisher
and Lieberman (1996). They found that families who use a single member to make
decisions with input from others provided more help than those who used a more
democratic method that may have been more disorganized. The families in this study did
not use a democratic method per se, but used consensus. They were well-organized and
went out of their way to share decision-making power. The key factors were
communication and a strong desire to work together and be inclusive. Another important
factor was a feeling on the part of most siblings who lived out of state that one aspect of
their role was to provide emotional support for siblings who lived in the area. Horowitz
(1985) found that emotional support from siblings mediated strain felt by caregivers. It is
possible that this role limited those siblings in raising issues that might lead to conflict, or
they may have felt some obligation to agree with decisions, even when they may have
been inclined to disagree. However, four of the families had more than one sibling living

nearby, and yet they still reported an absence of conflict.

151

In addition to sharing decision-making power, these families reported finding
ways for everyone to have some responsibility or role. Those who lived locally clearly
bore the brunt of caregiving and executing decisions. Those participants who lived out of
state recognized this and seemed to genuinely appreciate their efforts. Some of these
distant siblings provided knowledge and expertise on the disease or on resources. Others
managed financial affairs or investments. These contributions tended to be valued more
by local siblings than by those who were making them. Local siblings seemed to feel that
an important part of their burden was lifted, especially in terms of time and having fewer
things to worry about. It also was important for local siblings to feel that they were not
alone in handling all of the responsibilities and decisions.

It appears that the families in this study developed models for sharing
responsibilities and decision-making that are variations of those identified by Keith
(1995). She identified the primary caregiver model as the most common, featured by one
person handling all or most of the responsibility. None of the families in this study
displayed this model. Instead, the families displayed caregiving models that resembled
combinations of Keith’s partnership and team models. She described her partnership
model as two offspring of the same gender contributing relatively equally to caregiving
and equal in authority and responsibility and in making and implementing decisions.
Other siblings may be involved, but their roles were limited. Keith described her team
model as siblings who perceived themselves to be organized in an integrated, planned
system of care. Siblings shared responsibilities by taking on certain roles rather than
sharing roles and the workload equally. However, Keith saw the purpose of the team as

protecting each other from a difficult parent.

152

There were some indications of Keith’s (1995) primary caregiver model in terms
of caregiving tasks, responsibilities, and decision-making in the Hill family. However,
the siblings actually split the responsibilities of caring for both parents by having the
daughters care for their mother, and the brother provided care for their father when he
became impaired. Thus, the daughters formed what appeared to have been a partnership
model in caring for their mother and the brother became the primary caregiver for his
father. However, the overall family caregiving system looked more like a team, but
without the element of protection from a difficult parent.

The families in this study displayed several elements of Keith’s (1995) partnership
and team models. The Davis family was very close to being a partnership, except that
they tended to have specific roles in certain areas. They also were different than families
in Keith’s sample in that they are brother and sister in a two-sibling system. Keith saw
partnerships as consisting of sisters in larger sibling systems. Her two-sibling families
were almost exclusively sisters (one pair of brothers) that maintained a primary caregiver
system with half of them reporting negative feelings over perceived inequities in the work
of caregiving. The other five families in this study seemed to act like the partnership
model when it came to making decisions, but they included three siblings of rrrixed
gender, unlike Keith’s sample that had only two females. The families reported making
an effort to include everyone in decision-making, and several members with power of
attorney or guardianship indicated that they would not make a decision that was opposed
by other siblings. These families also appeared to act like the team model when it came
to roles, responsibilities and implementing decisions, but unlike Keith’s sample, there

were no indications of a need to protect each other from a difficult parent. They tended to

153

divide these activities according to availability and expertise, and maintained these
arrangements rather than sharing or trading them.

A strong feeling of trust was mentioned by several respondents. While the issue
of trust was not explored specifically, it is speculated that efforts to maintain regular
communication and to include everyone in making decisions were essential ingredients in
building this trust.

It was interesting that these families reported no conflict even with respect to
financial affairs. It was probably helpful that none of the families reported having to
contribute financially to their parents’ care. However, it was clear that nearly everyone
incurred expenses in terms of long-distance telephone bills, travel, and the time, energy,
and expense of providing assistance. There were no negative feelings expressed about
any of these expenses, even when it appeared that one sibling might be bearing more of
these costs. In addition, there were no indications of concern about inheritances being
lost or spent. This seems remarkable given the fact that it is well known that some
families have been torn apart by this issue. In fact, some participants mentioned that they
knew or were related to someone who experienced terrible disagreements over an
inheritance. Perhaps these families were able to avoid this to some extent because their
own economic status was solidly middle class. They had clearly set aside money as an
issue between them. Some of them gave some insight into this by indicating that their
primary concern was the care of their parent. Some also gave indications that they felt
their parents’ assets should be mainly used for their parents’ care. This may be part of a
value system or a life philosophy that made a difference for these families. There was

nothing found in the literature that directly related to this observation.

154

The two families with four siblings had one member either not participating in the
decision-making or declining to participate in the study. A description of the latter family
member indicated that he was a lot like his father, who was inclined to go along with
others in decision-making. Thus, all five families with more than two members had an
active decision-making system of three siblings. The smaller size lends itself to reaching
an agreement. More family members means more potential for at least one member to
disagree. It also means that it is more likely that at least one member will opt out of the
process. While larger families may have more members who could assist with care, they
also require a more complex communication system, and the chances of factions arising
increases with greater size. The aim of uncovering the effects of family size on decision-
making was not met, even though the sample was almost ideal in configuration.
Keith(l995) also experienced situations in which a sibling was uninvolved or declined to
participate, but it was not clear if there was any pattern with respect to family size.

These families consistently reported reaching an agreement about elder care
without conflict. As a result, they did not describe using negotiation and change as
procedures for managing conflict. These procedures would be expected in families that
experienced conflict, but were able to successfully manage it and make decisions. The
sample was intended to be limited to families who felt they were successful in making
elder care decisions together. It was expected that most of these successful families
would experience at least some disagreement at some time during their decision-making,
but they would find ways of managing the conflict. However, the families that presented
themselves for this study did not report this. Perhaps the families in this study did

experience conflicts that were managed, but forgot it or chose to not report it. Ifthis were

155

the case, it is equally remarkable that no one offered any indication of disagreements, and
everyone maintained the same position. It is possible that those who had experience with
managing conflict were less likely to voluntarily come forward for fear of “rocking the
boat.” Or, they may not have wanted to risk exposing their disagreements to an outsider.
In any case, this study demonstrated that siblings can build a system for making decisions
that facilitates agreement and consensus if they use good communication, shared power,
and shared responsibility.
Contextual Factors That Influence Decisions

Contextual factors that influenced decisions also were covered in the findings. Of
note was the fact that the overwhelming concerns reported by these families revolved
around the elder care situation and the difficulties in finding suitable care. Very little
assistance was provided by professionals. For the most part, the families were on their
own in securing proper care. This included making decisions about the appropriateness
of the setting for their parent. The fact that every family had at least one member with a
medical or human services background meant that there was at least one member who
had some knowledge about human services. It is of some concern to think about other
families who do not have this kind of expertise available. There are some information
and referral services that are becoming available in major metropolitan areas, usually for
a fee. However, in other areas these services are not available. It is a matter of searching
through the telephone book or relying on word of mouth. For families in these
circumstances, it is clear that what is needed is access to assessment of care needs, a
system for tracking the availability of beds in various settings that will meet various

needs, and a system for assisting families who are faced with emergency or crisis

156

situations that require immediate placement in an appropriate setting. Immediate
placement is unlikely to be available unless the care receiver is hospitalized.
Unfortunately, in order to receive assistance fiom medical professionals in arranging an
emergency placement, the family may have to force the issue by refusing to take their
member from the hospital when a discharge is scheduled, but a discharge plan is not
completed.

An interesting pattern was noted with regard to distance and proximity. All of the
Michigan siblings in the study were within twenty miles of their parent at the time care
began. At the time of the interview, these siblings were within fifteen miles, and most
were less than ten. On the other hand, those who lived further than fifteen miles were all
out of state. They were living in California, Nevada, Florida, Alabama, North Carolina,
Pennsylvania (Philadelphia), and Sicily. This represented a dichotomy of siblings living
either very close to the parent or at a long distance. The next closest sibling beyond
fifteen miles was at least 700 miles away. This is an interesting pattern, and at the very
least, shows that families can be successful at working together even across great
distances.

Expected Outcomes

The expected outcomes were described in Chapter Four. Reports of desired
outcomes generally related to concerns about quality of life for the parent. Fewer
responses reflected concerns about quality of life for the family. Respondents mentioned
the need for availability and convenience, but this was not over-emphasized. However,
there were some indirect indications of concerns about quality of life for the family in

other areas. For instance, family members who worked full-time were not expected to

157

quit work to care for their parent. Those who were raising children were not expected to
move their parent into their home to care for him or her. In fact, several parents had
expressed a desire not to live with their adult sons and daughters or become a burden to
them. Others may not have said this directly, but had made plans to receive care in other
ways by arranging for financial resources, purchasing long-term care insurance, or
indicating some of their wishes through consent documents.

Issues regarding quality of life for participants and their family of procreation
were not mentioned by participants for themselves. However, one might speculate that
this contributed to consideration of various options as decisions about care were made.
The situation with the one family that provided extensive family care provided some
insight into the experience of living with a parent suffering from dementia. The caregiver
described the stress of having high demands on his time, but also feeling guilty when he
took time to do something when he could have been at home. He described loss of sleep
when his father was up at night. He also had to go after his father when he left the house
at night. His sisters expressed concerns about the stress that he and his wife were
experiencing. His wife felt that he was overburdened and under too much stress. In the
end, he decided to make the move into an AFC after his father hit him. These were
glimpses into the deterioration in quality of life that many families face when they engage
in family care.

Helpful and Difficult Circumstances

Questions about what was helpful or made decisions about elder care difficult

seemed to confuse the respondents more than they yielded any new information.

Participants tended to reiterate information related to contextual factors, especially those

158

 

related to finding appropriate care, planning ahead, and having financial resources.
Difficulties were mentioned associated with moving one’s parent out of his or her home,
taking away a driver’s license, or watching their abilities decline. Thus, these questions
did not serve their intended purpose of uncovering positive or negative aspects of the

decision-making process.

Discussion of Interpretive Findings

This discussion focuses on the effects of prior decision-making on family
decision-making regarding elder care and how family decision-making and outcomes can
influence future decision-making. The families also were asked about important factors
that influenced decisions and what outcomes the family wanted. These questions did not
result in any discussion of the importance of the decision-making process or of the
outcome. Instead, respondents talked about the circumstances and the product of their
decision (outcome).

The Effects of Prior Decision-Making on Famin Decision-Making

According to the respondents, decision-making in marriage and as parents had a
strong influence on the process of family decision-making in elder care. The strongest
influence was reported with marital decision-making. Participants generally saw a great
deal of similarity between their marital and their family decision-making with their
siblings. This may be due to the fact that one’s spouse and one’s siblings are generally in
a similar age group, so similar patterns of decision-making might be used with each. It
also might reflect similarity with respect to socioeconomic status. Most participants who

had successful marriages or remaniages described their marital decision-making in terms

159

that related to discussing decisions and reaching a joint agreement or consensus. Even
those who did not describe this expressed a desire for it. One respondent saw herself as
the more dominant decision maker, but wanted her spouse to be more involved. The
other saw herself as preferring to have her husband make the final decision, but using
discussion and agreement. Similar results were seen with parental decision-making, only
these were not as strong, mainly due to husbands deferring to wives in child-rearing
situations. These findings appear to be new. There were no studies found that
investigated a relationship between family elder care decisions and decisions siblings
make in their marriages or as parents.

There was less similarity reported between decision-making by the parents in the
family of origin and family decision-making by siblings. Most of the parents had
marriages that respondents described as one partner being dominant or decisions being
split along gender lines. For most of these family members, their mothers made child-
rearing and household decisions and their fathers made decisions outside of the home.
For participants, there was some indication of similarity with this latter arrangement in
their own marriages. As noted, some husbands were more likely to defer to their wives in
child-rearing decisions. The overwhelming majority of respondents reported a form of
egalitarian decision-making in their marriage. This was different from the recollections
of most participants regarding their parents’ marriages. Again, no references to this were
found in the literature.

The Influence of Family Decision-Making and Outcomes on Future Decision-Making

There was strong support reported for family decision-making by siblings

influencing future experiences with decision-making for parents. All of the families

160

reported positive feelings about their ability to communicate and discuss decisions, reach

an agreement, and share power and responsibility. Thus, all of them expressed

satisfaction, appreciation, and gratitude for being able to do so. Some felt that the process

had actually made them feel closer to each other. Those who were still involved with

elder care decisions expected to continue to use this process. There were no indications

that family decision-making influenced future marital decision-making processes directly.

However, some participants alluded to the need to make one’s wishes known regarding E
elder care and resuscitation. They also mentioned the need to set up wills, trusts, and i
powers of attorney ahead of time. In terms of the influence on firture parental decision-

making, only four participants were still raising children, and only two of those had

children below age twelve. So, little if any effect could be expected. However, as

discussed earlier, one respondent felt that her eXperiences with her siblings influenced

how she and her husband made parenting decisions. The finding that prior decision-

making influenced expectations about subsequent decision-making was consistent with

Scanzoni and Szinovacz’s (1980) theory.

The influence of expected outcomes on future family decision-making was not
readily apparent. However, it is assumed that satisfaction with the outcome would lead to
continuing to use the same decision-making process. On the other hand, dissatisfaction
with the outcome would tend to create conflict or a change in the way decisions are made.
Since families expressed satisfaction with the process and an intention to continue using
it, this would indicate that the outcome reinforced continuing with the same decision-
making process for future decisions. These assumptions would fit with Scanzoni and

Szinovacz’s (1980) theory.

161

Discussion of Theoretical Findings

An original research question for this study was about the use of decision—making
procedures from Scanzoni and Szinovacz (1980) by families in making decisions for a
parent suffering from dementia. The answer to this was discussed earlier under
descriptive findings. Basically, families reported using discussion and consensus. They
did not report experiencing conflict, so they did not use negotiation or change. Power .m
was shared according to the respondents. A second question was whether there were
indications of a pattern for family decision-making.

Indications of a Pattern for Family Decision-Making

A theoretical question for this study was whether a pattern of decision-making
procedures could be identified that reflected a family pattern regarding family decision-
making. Smerglia and Deimeling (1997) speculated that family interactions regarding
elder care decisions were part of broader family relationships and reflected these
relationships. The findings of this study supported the emergence of a pattern, in that
family members were very consistent in describing how decisions were made for their
elderly parents. However, the source of this pattern appeared to be primarily related to
generational placement and changes in society, rather than a pattern that was passed down
through the family from an earlier generation. Findings indicated that marital and
parental decision-making had a very strong influence on family elder care decision-
making by siblings. Thus, decisions between spouses in successful marriages and as
parents were seen as the main sources for the pattern of using discussion and consensus in
family decision-making. For the most part, the influence on these families was not

coming from their parents. The use of shared power and shared responsibility also

162

reflected the more egalitarian marriages that the participants described. The high
percentage of intact marriages and successful remaniages is further evidence that
discussion and consensus are valid procedures for decision-making in long-term
relationships.

The results did not indicate that a family pattern influenced family decision-

making. Instead, changes in society seemed to be influencing a family pattern. For these

“3

families it appeared that some of the changes in the larger society helped them to find

kiwi!

ways of working together as adult siblings. In essence, the findings indicated that couples
who chose egalitarian marriages also were likely to have egalitarian relationships with
their siblings when it came to elder care decisions. If nothing else, they seemed likely to
expect an egalitarian relationship. There was nothing found in the literature that would
link shared marital decision-making to shared decision-making among adult siblings
faced with elder care decisions. Further research in this area is needed to determine if this

represents a broader pattern in society.

Reflections

There were several surprises in conducting this study. First, the candor of the
respondents was surprising. They seemed eager to tell their stories. Even the telephone
interviews did not require any significant “warm up.” It appears that having a local
sibling helped a great deal, but I still wondered if I would experience some reluctance to
share the details of their families’ lives with a complete stranger. Of course, this may be
due in part to the fact that I sampled for families who felt that they were successful.

Families experiencing conflict might be more resistant and not so candid. They also

163

would have to be recruited differently. Still, even with successful families, they were
being asked to talk about a real family tragedy. For these family members, it was as if
they had been waiting to tell someone about their experience. For the most part, all I had
to do was get them started and they poured out their stories.

I did not expect that the families would be unanimous in reporting an absence of
conflict, relying only on discussion and consensus. While I sampled for families that felt
they were successful, I thought at least half of them would report experiencing at least
mild disagreements, but they would have found ways of managing this by using
negotiation, compromise, and changes in position or attitude. Thus, they would have
become successful by learning to manage conflict. This was apparently not the case for
these families. It is possible that they forgot about conflicts, choosing to see or report
only the positive side of their relationships with their siblings. They may have perceived
the situation in a way that precluded any conflict. For example, they might have felt that
“good families” do not argue about taking care of their parents. Thus, the participants
may have been reluctant to share any negative experiences. Sampling bias may have
excluded families in which conflict occurred and was managed. However, family
members consistently reported no conflict and added remarks about feeling “lucky" or
“gratefirl” that they were able to make these decisions together. Several also commented
about knowing about situations in which families were experiencing a great deal of
conflict. Either these families were good at hiding their conflict and did so with a united
front, or they were indeed able to find a way to work together without experiencing
conflict. Their reports consistently indicated that they were able to make these difficult

decisions without conflict.

164

This leaves open questions about families that do experience conflict. How do
they manage conflict? How do they reach decisions when there is a disagreement? What
effect does conflict have on their decision-making process? What are the positive and
negative aspects of experiencing conflict and managing it? How can practitioners help
families that experience conflict? What are the most effective approaches and
techniques? How can previous experiences with managing conflict be used to manage
this conflict? Lieberman and Fisher (1999) attempted to answer some of these questions
by asking participants to rate the frequency with which family members gave in, a
compromise was reached, conflict was avoided, the family resolved the conflict, the
farme handled it in a positive manner, or members felt pressured or coerced. However,
their use of quantitative, scaled responses did not give much insight into how families
actually go about using any of these methods.

It was interesting to find that only one of these families used lengthy co-residence
to provide elder care. I expected to see more of a progression from paid or family care in
the parent’s home, to family care in the adult son or daughter’s home, and finally to
residential care. These families clearly had older parents with substantial impairments.
The parents ranged in age from 78 to 93 years. Two of them had died before the
interviews had taken place, and three more had died when I re-contacted participants
regarding using direct quotes. Several families tried hiring a paid caregiver in the
parent’s home, but this generally lasted only a short time due to high costs and difficulty
in finding reliable caregivers. Only one family made extensive use of family care in the
home of an offspring. It was unusual that this was a son, and he did more of the

caregiving than his wife.

165

 

It was surprising to find that these adult sons and daughters did not report
changing their work schedules or their living or work arrangements. No one moved
because of their parent’s illness. This was consistent with Stern (1996) who concluded
that the decisions of sons and daughters about where to live was made independent of

future caregiving responsibilities. He proposed that once the parent began to need care,

'5':

the family decided on arrangements while considering the location of each offspring.

There were indications of this with most of the families. However, Stern found that

‘L:AL.Q—. A r
A

if.
1‘

families did not consider the work responsibilities of siblings, but families in this study
did. He also indicated that the primary caregiver then decided on whether to reduce work
hours. These families did not reduce their work schedules. No one quit working or cut
back their hours. Only one family member noted an adaptation in that she did not add a
fourth day to her work schedule when it was offered. One respondent changed his living
arrangement, and that was the son who provided family care in his own home.

None of the families reported having to spend their own funds on care, although
several expressed a willingness to do so if necessary. Several respondents cited the
availability of financial resources as an important factor in the decisions that were made.
It appears that these families used those resources to purchase care, rather than saving
money in exchange for time. The majority of respondents were college graduates and
apparently had occupations and careers that provided a good family income when
combined with their spouses’ income. Their relative affluence, along with that of their
parents, expanded their options considerably. This might in part account for the lack of
any apparent conflict.

It was disconcerting to find how little help these families reported receiving from

166

professionals. I thought that successful families might be those who were able to access

the system to smooth the way through caregiving arrangements. Instead, professionals

were conspicuous by their absence. One family member, a nurse, described how they had

to force the issue by refusing to accept her mother for discharge from the hospital in order

to get the discharge planner to locate a residential placement. Other members described

the greatest difficulty as being on their own without any assistance in locating a suitable

place that would provide the appropriate level of care. F arnily members used their f
informal network of fiiends and relatives or started with the telephone book more than
they were able to use professional services.

Probably the biggest surprise was the indication that these families used decision-
making with their spouse as a model for working with their siblings. I thought that I
might see more influence from the family of origin. I expected to find sons and daughters
who had seen their parents discussing and making decisions together, but this was
generally not the case. These respondents described decision-making by their parents as
mainly a more individual style of decision-making. This was probably related to the age
cohort of the parents.

If I were to do this study again, I would continue recruiting until I had more
families with four or more members to see if size made decision-making more difficult. I
also would try to recruit families that experienced conflict, but were able to manage it and
become successful. I would probably ask the AF C’s or the day program to refer me to
families so that I could look for this. I would do more pretesting and refinement of my
instrument to make sure that I got the most amount of information. As I pointed out,

there were a few questions that did not generate the information that I was seeking. I also

167

would want to get training in the use of a software program that would analyze and
organize the data. This would serve as an investigator triangulation. I found that the
program I purchased was too complicated for me. I felt that it was taking me too much
time to learn coding and data entry along becoming familiar with the large number of
options for analysis and data displays. With the small sample I had, I decided that it was
best to simplify the analysis and concentrate on displaying the data in a way that would
provide a rich description of each family. Thus, I used only the hand analysis which I had

planned.

Implications

As an exploratory study, it is hoped that this dissertation might stimulate interest
and a direction for firrther research. The need for research in this area will certainly grow,
barring any sudden cures for the various diseases and conditions that cause dementia.
Demographic trends project a large increase in the number of elderly persons, especially
those over 80 years of age. More families may be faced with having to make decisions
for an impaired parent, since increased age appears to be a factor in the incidence of
dementia.

Further research in the area of family decision-making for elderly parents is
needed. This includes further examination of context factors that influence decisions,
decision-making processes and procedures, desired outcomes, and the use of previous
decision-making to develop successful decision-making processes. Research is needed
into how families manage conflict when they experience disagreements in elder care

situations and how professionals can assist families in doing this, so they do not have to

168

 

learn it on their own. This is supported by Smerglia and Deimeling (1997) who
recommended that practitioners shift their focus away from the effects of impairment of
the care receiver on the family and focus on enhancing the family’s flexibility,
adaptability, and decision-making skills. This should include ways that conflict can be
managed when siblings live long distances fiom each other.

Research into the effects of positive and negative elder care experiences on the
children of adult sons and daughters would yield insights into future trends for the next
generation of elderly persons, especially the “baby boomers.” In addition, studies should
explore the effects of divorce, distance, transience, live-in relationships, half- and step-
sibling relations, and various family forms on family decision-making processes for
impaired members. Studies are needed on the effects of demographic factors such as
race, ethnicity, religion, social and economic status, age, and gender constellation on
family decision-making for elderly parents.

Replication of this study is needed to see if samples of other families report an
absence of conflict. If so, it would be important to examine whether this reflects
undetected flaws in the research design, a desire to avoid conflict at any cost, or if
families are truly able to manage conflict through extensive communication and shared
decision-making and responsibility. Follow-up research could test whether conflict arises
with other issues. One area for study might be to look at how the estate is settled as
compared to how decisions are made about elder care. It would be interesting to see if
care receivers who do not have dementia perceive the caregiving and conflict in the same
way as their families. Further study is needed to test the findings that marital and parental

decision-making may influence family decision-making in elder care. If this is supported,

169

then studies might investigate the effects of macro systemic influences and time on these
decisions.

This study indicates a need to develop professional services that can facilitate
access to important resources and services needed by families as they face caregiving
decisions. It is essential that professionals be available to help families negotiate the
“system,” or what appears to be the lack of a system. There is a need to develop models
for facilitating the decision-making process for families, especially those who are
experiencing conflict. In addition, planning ahead and having financial resources are vital
to giving families choices.

In terms of education, this study indicates a need to provide educated
professionals who can work with families faced with these difficult decisions. As a social
work educator, the overwhelming majority of students I see are interested in working with
other populations, especially children, rather than the elderly. However, in the future, the
increased demand for services will clearly be in areas related to aging. The families in
this study received little if any help from professionals, not because they did not need it or
want it, but because they were either unaware of it, or it simply was not available. This
indicates a need for services to assist families in locating resources and negotiating the
caregiving system. This includes services that are designed to assess the levels of care
that are needed, coordinate service availability and delivery, track the availability of
residential openings, and assist with application processes for various services. There
also is a need to train professionals to work with families on their communication,
problem-solving, decision-making, and conflict-management skills.

This study has implications for public policy. Couch, Daly, and Wolf (1999)

170

 

concluded that future increases in women’s wages relative to men’s will increase
financial contributions to parents and could lead to greater demands for formal
caregiving. This study clearly indicated that middle class families will use their parent’s
assets to purchase care. However, these families did not seek out nursing home care as a
first option. In fact, it tended to be a last resort. Support for alternative forms of care is
greatly needed. Waiting lists at nursing homes and staffed AF C ’3 mean that there is little
competition, and thus, no real incentive to lower or contain costs. And yet, assistance
from the government is generally not available, except for Medicaid payments to nursing
homes, the most expensive option. As these governmental expenditures skyrocket, this
assistance is not likely to keep up with demand and will probably be reduced, especially
during times of cut-backs in spending. At the very least, if the government tries to hold
the line on these costs, the net effect will be that fewer families will receive assistance
even as demand grows. Instead of waiting for the inevitable reduction in support, the
federal and state governments need to aggressively support the development of more
affordable alternatives to institutional care.

Finally, families need to use technology to communicate and work together, and
professionals need to use technology to serve families with members who live great
distances away. The use of technology and mixed methods of data collection, especially
the use of telephone interviews and the intemet, was supported by this study. With new
technology, including long distance voice and video capability and advances in voice
recognition programs, the use of intemet interviews looks very promising. The increased
costs associated with research of any kind can be overcome by further validation of these

and similar methods. Changes in society and in the family, along with increased

171

 

mobility, have made it more difficult to study families. In cases of elder care, studying
adult siblings who are very mobile is particularly challenging. It also is very difficult for
families to work together under these circumstances. It is equally as difficult for
professionals to provide comprehensive services to families. The development of
inexpensive and effective research techniques is vital to conducting research in these

important areas.

Conclusion

This study explored the experiences of six families in making decisions for elderly
parents suffering from dementia. It provided an in-depth look at decision-making for
these adult siblings, and described the processes by which they were able to successfully
make these difficult decisions together as a family. This study provided insight into the
contexts that influenced elder care decisions for these families and the outcomes that they
expected. It provided a glimpse into how these respondents used other decision-making
experiences to shape the way in which they made decisions for their parents. The family
members in this study were universal in their desire to help other families by sharing their
experiences. They are to be commended for their generosity and courage in doing so. I
share their desire and hope that others will take an interest in the challenges families face

when a parent or any family member becomes impaired.

172

BIBLIOGRAPHY

173

BIBLIOGRAPHY

Adams, P., & Dominick, G. L. (1995). The old, the young, and the welfare state.
Generations, 19, 38-42.

Allen, K. R., Blieszner, R., Roberto, K. A., Farnsworth, E. B., & Wilcox, K. L.
(1999). Older adults and their children: Family patterns of structural diversity. Family
Relations, 48, 151-157.

Bengtson, V. L. (2001) Beyond the nuclear family: The increasing importance of
multigenerational bonds. Marriage & the Family, 63, 1-16.

Bergstrom, M. J ., & Nussbaum, J. F. (1996). Cohort differences in interpersonal
conflict: Implications for the older patient-younger care provider interaction. Health
Communication, 8, 233-248.

Brody, E. M. (1966). The aging family. The Gerontologist, 6, 201-6.

Brody, E. M. (1970). The etiquette of filial behavior. Aging & Human
Development, 1, 87-94.

Brody, E. M. (1978,). The aging of the family. Annals of the American Academy of
Political & Social Science, 438, 13-27.

Brody, E. M. (1979). Aging parents and aging children. In P. K. Ragan (Ed.),
Aging Parents, Los Angeles, CA: University of Southern California Press, 267-87.

Brody, E. M. (1981). 'Women in the middle' and family help to older people. The
Gerontologist, 21, 471-80.

Brody, E. M. (1985). Parent care as a normative family stress. The Gerontologist,
25, 19-29.

Brody, E. M. (1989). The family at risk. In E. Light & B. D. Lebowitz (Eds.),
Alzheimer’s Disease Treatment and Family Stress: Directions for Research. Washington,
DC: National Institute of Mental Health.

Brody, E. M. (1990). Women in the Middle: Their Parent Care Years. New York,
NY: Springer.

Brody, E. M., Johnsen, P., & F ulcomer, M. (1984). What should adult children do
for elderly parents? Opinions and preferences of three generations of women.
Gerontology, 39, 736-46.

174

Brody, E. M., Johnsen, P., Fulcomer, M., & Lang, A. (1983). Women's changing
roles and help to the elderly: Attitudes of three generations of women. Gerontology, 38,
597-607.

Brody, E. M., Kleban, M., Hoffinan, M., & Schoonover, C. (1988). Adult
daughters and parent care: A comparison of one-, two-, and three-generation households.
Home Health Care Services Quarterly, 9, 19-45.

Brody, E. M., Kleban, M., Johnsen, P., Hoffman, M., & Schoonover, C. (1987).
Work status and parent care: A comparison of four groups of women. The Gerontologist,
27, 201-8.

Brody, E. M., Litvin, S. J., Hoffman, C., & Kleban, M. H. (1995). Marital status
of caregiving daughters and co-residence with dependent parents. The Gerontologist, 35 ,
75-85.

Brody, E. M., & Schoonover, C. (1986). Patterns of parent care when adult
daughters work and when they do not. The Gerontologist, 26, 372-81.

Bromley, M. C., & Blieszner, R (1997). Planning for long-term care: Filial
behavior and quality of adult children with independent parents. Family Relations, 46,
155-162.

Bronfenbrenner, U. (1979, 1981, 1996). The Ecology of Human Development:
Experiments by Nature and Design. Cambridge, MA: Harvard University Press.

Brown, J. K., Subbiah, P., & Sarah, T. (1994). Being in charge: Older women and
their younger female kin. Cross-Cultural Gerontology, 9, 231-254.

Brubaker, T. H. (1990). Families in later life: A burgeoning research area.
Marriage & the Family, 52, 959-981.

Bubolz, M. M., & Sontag, S. (1993). Human ecology theory. In Source Book of
Family Theories & Methods, P.G. Boss, Dohcrty, W. J., LaRossa, R., Schumm, W. R., &
Steinmetz, S. K. Eds. New York: Plenum Press.

Bustrillos, N. (1963). Decision-making styles of selected Mexican homemakers.
Unpublished Ph.D. Dissertation, Michigan State University.

Caldwell, J. (1982). Theories of Fertility Change. New York: Academic Press.

Carruth, A. K. (1996). Development and testing of the caregiver reciprocity scale.
Nursing Research, 45, 92-97.

175

 

Chang, C. F ., & White-Means, S. (1991) The men who care: An analysis of male
primary caregivers who care for frail elderly at home. Applied Gerontology, 10, 342-358.

Checkovich, T. J., & Stern, S. (2002). Shared caregiving responsibilities of adult
siblings with elderly parents. Human Resources, 37, 441-78.

Cicirelli, V. G. (1983). Adult children's attachment and helping behavior to
elderly parents: A path model. Marriage & the Family, 45, 815-825.

Cicirelli, V. G. (1992). Family Caregiving: Autonomous and Paternalistic
Decision Making. Newberry Park, CA: Sage.

Cicirelli, V. G. (1993). Attachment and obligation as daughters' motives for
caregiver behavior and subsequent effect on subjective burden. Psychology & Aging, 8,
144-1 55.

Cicirelli, V. G. (1995). A measure of caregiving daughters' attachment to elderly
mothers. Family Psychology, 9, 89-94.

Cochran, D. L. (1999). Advance elder care decision-making: A model of family
planning. Gerontological Social Work, 32, 53-64.

Coleman, M., Ganong, L., & Cable, S. M. (1997). Beliefs about women's
intergenrational family obligations to provide support before and after divorce and
remarriage. Marriage & the Family, 59, 165-176.

Cooper-Kazzaz, R., F rielander, Y. & Steinberg, A. (1999). Longitudinal changes
in attitudes of offspring concerning life-sustaining measures for their terminally ill
parents. Journal of the American Geriatrics Society, 4 7, 1337-1341.

Couch, K. A., Daly, M. C., & Wolf, D. A. (1999). Time? Money? Both? The
allocation of resources to older parents. Demography, 36, 219-32

Coward, R. T., & Dwyer, I. W. (1990). The association of gender, sibling network
composition, and patterns of parent care by adult children. Research on Aging, 12, 158-
1 8 1 .

Crispi, E. L., Schiaffino, K., & Berman, W. H. (1997). The contribution of
attachment to burden in adult children of institutionalized parents with dementia. The
Gerontologist, 37, 52-60.

Dellmann-Jenkins, M., Hofer, K., & Chekra, J. (1992). Elder care in the 1990's:
Challenges and supports for educating families. Educational Gerontology, 18, 775-84.

176

Denzin, N. K. (1978). The Research Act: A Theoretical Introduction to
Sociological Methods. New York: McGraw-Hill.

Dwyer, J. W., & Coward, R. T. (1991). A muitivariate comparison of the
involvement of adult sons versus daughters in the care of impaired parents. Gerontology:
Social Sciences, 46, $259-$269.

Dwyer, J. W., & Coward, R. T. (1992). Gender, Families and Elder Care.
Newbury Park, CA: Sage.

Dryer, J ., Henretta, J ., Coward, R. T., & Barton, A. J. (1992). Changes in the
helping behaviors of adult children or caregivers. Research on Aging, 14, 351-375.

Ettner, S. L. (1996). The opportunity costs of elder care. Human Resources, 31,
1 89-205.

Farkas, J. I., & Himes, C. L. (1997). The influence of caregiving and employment
on the voluntary activities of midlife and older women. Journals of Gerontology, 523,
S1 80—S l 89.

F ingerman, K. L. (1996). Sources of tension in aging mother and adult daughter
relationship. Psychology & Aging, 11, 591-606.

Fingerman, K. L. (2001). A distant closeness: Intimacy between parents and their
children in later life. Generations, 25, 26-33.

Finley, N. J., Roberts, M. D., & Banham, B. F. (1988). Motivators and inhibitors
of attitudes of filial obligation toward parents. The Gerontologist, 28, 73-78.

Fisher, B. J. (1995). Successful aging, life satisfaction, and generativity in later
life. Aging & Human Development, 41, 239-250.

Fisher, L., & Lieberman, M. A. (1994). Alzheimer's disease: The impact of the
family on spouses, offsprings and in-laws. Family Process, 33, 305325.

Fisher L., & Lieberman, M. A (1996). The effects of family context on adult
offspring of patients with Alzheimer's disease: A longitudinal study. Family Psychology,
70, 180-191.

Franks, M. M., & Stephens, M. A. (1996). Social support in the context of
caregiving: Husbands’ provision of support to wives involved in parent care. The

Journals of Gerontology, 518, 43-52.

Ganong, L. H., Coleman, M., & McDaniel, A. K. (1998). Attitudes regarding
obligations to assist an older parent or stepparent following later-life remarriage.

177

Marriage & the Family, 60, 595-610.

Ganong, L. H., & Coleman, M. (1998). Attitudes toward filial responsibilities to
help elderly divorced parents and stepparents. Aging Studies, 12, 271-90.

Gaugler, J. E., Zarit, S. H., & Pearlin, L. I. (1999). Caregiving and
institutionalization: Perceptions of family conflict and socioemotional support.
International Journal of Aging & Human Development, 49, 1-25.

Gerstel, N., & Gallagher, S. (1994). Caring for kith and kin: Gender, employment,
and the privatization of care. Social Problems, 41 , 519-539.

Gilgun, J. F. (1992). Definitions, methodologies, and methods in qualitative
family research. In Gilgun, J. F., Daly, K., & Handel, G. Eds. (1992). Qualitative
Methods in Family Research. Newberry Park, CA: Sage.

Goldscheider, F. K., & Lawton, L. (1998). Family experiences and the erosion of
support for intergenerational coresidence. Marriage & the Family, 60, 623-632.

Groger, L. (1994). Decision as a process: A conceptual model of black elders'
nursing home placement. Aging Studies, 8, 77-94.

Hagstad, G. (1988). Demographic change and the life course. Family Relations,
37, 405-410.

Hanson, S. L., Sauer, W. J., & Seelbach, W. C. (1983). Racial and cohort
variations in filial responsibility norms. The Gerontologist, 23, 626631.

Hareven, T. (1994). Aging and generational relations: A historical and life course
perspective. Annual Review Sociology, 20, 437-461.

Henkin, N., & Kingson, E. (1998-99). Advancing an intergenerational agenda for
the twenty-first century. Generations, 22, 99-105.

Henard, J. C. (1996). Cultural problems of ageing especially regarding gender and
intergenerational equity. Social Science & Medicine, 43, 667-680.

Henretta, J. G, Hill, M. S., & Li, W. (1997). The selection of children to provide
care: The effect of earlier parental transfers. Journals of Gerontology, 52B, 110-119.

Hirshom, B. A., & Piering, P. (1998-99). Older people at risk: issues and
intergenerational responses. Generations, 22, 49-53.

Horowitz, A. (1985). Sons and daughters as caregivers to older parents:
Differences in role performances and consequences. The Gerontologist, 25, 612-617.

178

Iecovich, E. (2000). Sources of stress and conflicts between elderly patients, their
family members and personnel in care settings. Gerontological Social Work, 34, 73-88.

Ikkink, K. K., Tilburg, T. van, & Knipscheer, K. C. (1999). Perceived
instrumental support exchanges in relationships between elderly parents and their adult
children: Normative and structural explanations. Marriage & the Family, 61 , 831-44.

Ingersoll-Dayton, B., Starrels, M. E., & Dowler, D. (1996). Caregiving for parents
and parents-in-law: Is gender important? The Gerontologist, 36, 483-491.

Keith, C. (1995). Family caregiving systems: Models, resources, and values.
Marriage & the Family, 57, 179-189.

Knipscheer, K. C. (1988). In Emergent Theories of Aging, J. E. Birren, V. L.
Bengtson, & D. E. Deutchman, Eds. New York: Springer.

Lach, J. (1999). For want of a plan. American Demographics, 21, 22.

Lee, R. D. (1994). Population age structure, intergenerational transfer, and wealth:
A new approach with applications to the US. Human Resources, 29, 1027-1063.

Lieberman, M. A., & Fisher, L. (1999). The effects of family conflict resolution
and decision-making on the provision of help for an elder with Alzheimer's disease. The
Gerontologist, 39, 159-166.

Lieberman, M. A., & Fisher, L. (2001). The effects of nursing home placement on
family caregivers of patients with Alzheimer’s disease. The Gerontologist, 41, 819-26.

Logan, J. R., & Spitze, G. (1995). Self-interest and altruism in intergenerational
relations. Demography, 32, 353-364.

Loomis, L. S., & Booth, A. (1995). Multigenerational caregiving and well-being:
The myth of the beleaguered sandwich generation. Family Issues, 16, 131-148.

Marks, N. F. (1996). Caregiving across the life span: National prevalence and
predictors. Family Relations, 45, 27-36.

Marshall, C., & Rossman, G. B. (1989). Designing Qualitative Research.
Newberry Park, CA: Sage.

Martire, L. M., Stephens, M. A., & Franks, M. M. (1997). Multiple roles of

women caregivers: Feelings of mastery and self esteem as predictors of psychosocial
well-being. Women & Aging, 9, 1 17-131.

179

Mathews, S. H., & Heidom, J. (1998). Meeting filial responsibilities in brothers-
only sibling groups. Journals of Gerontology, 53B, S278-S286.

Matthews, S. H., & Rosner, T. T. (1988). Shared filial responsibility: The family
as primary caregiver. Marriage and the Family, 50, (1) 85-1 95.

McAuley, W. J ., & Travis, S. S. (1997). Positions of influence in the nursing
home admission decision. Research on Aging, 19, 26-45.

McGarry, K., & Schoeni, R. F. (1997). Transfer behavior within the family:
Results from the asset and health dynamics study. Journals of Gerontology, 528, 82-92.

Mills, T., & Wihnouth, J. M. (2002). The intergenerational differences and
similarities in life-sustaining treatment attitudes and decision factors. Family Relations,
51, 46-54.

Mittleman, M. S., Fenis, S. H., Shulman, E., Steinberg, G., & Levin, B. (1996). A
family intervention to delay nursing home placement of patients with Alzheimer's
disease: A randomized controlled trial. JAMA, 276, 1725-1731.

Moen, P., Robinson, J ., & Fields, V. (1994). Women’s work and caregiving roles:
A life course approach. Gerontology, 49, $176-$186.

Mui, A. C. (1995). Caring for frail elderly parents: A comparison of adult sons
and daughters. The Gerontologist, 35, 86-93

Neal, M. B., Ingersoll-Dayton, B., & Starrels, M. E. (1997). Gender and
relationship differences in caregiving patterns and consequences among employed
caregivers. The Gerontologist, 3 7, 804-816.

Page, T. (1997). On the problem of achieving efficiency and equity,
intergenerationally. Land Economics, 73, 580-596.

Paolucci, B., Hall, 0. A., & Axinn, N. W. (1977). Family Decision-Making: An
Ecosystem Approach. New York: John Wiley & Sons.

Parrot, T. M., & Bengtson, V. L. (1998). The effects of earlier intergenerational
affection, normative expectations, and family conflict on contemporary exchanges of help
and support. Research on Aging, 2], 73-105.

Patton, M. Q. (1990). Qualitative Evaluation and Research Methods, 2nd ed.
Newberry Park, CA: Sage.

Peek, M. K., Coward, R. T., & Peek, C. W. (1998). Are expectations for care
related to the receipt of care? An analysis of parent care among disabled elders. Journals

180

of Gerontology, 5 68, S 127-$136.

Pezzin, L. E., & Schone, B. S. (1997). The allocation of resources in
intergenerational households: Adult children and their elderly parents. American
Economic Review, 87, 460-464.

Pezzin, L. E., & Schone, B. S. (1999). Parental marital disruption and
intergenerational transfers: An analysis of lone elderly parents and their children.
Demography, 36, 287-97.

Piercy, K. W. (1998). Theorizing about farme caregiving: The role of
responsibility. Marriage & the Family, 60, 109-118.

Piercy, K. W., & Blieszner, R. (1999). Balancing family life: How adult children
link elder-care responsibility to service utilization. Journal of Applied Gerontology, 18,
440-459.

Piercy, K. W., & Chapman, J. G. (2001). Adopting the caregiver role: A family
legacy. Family Relations, 50, 386-93.

Pyke, K. D., & V. L. Bengston. (1996). Care more or less: Individualistic and
collectivist systems of family elder care. Marriage & the Family, 58, 379-392.

Pyke, K. D. (1999). The micropolitics of care in relationships between aging
parents and adult children: Individualism, collectivism and power. Marriage & the
Family, 61, 661-672.

Pratt, C. C., Jones, L. L., Shin, H. Y., & Walker, A. J. (1989). Autonomy and
decision-making between single older women and their caregiving daughters. The
Gerontologist, 29, 792-797.

Reinardy, J. R. (1992). Decisional control in moving to a nursing home:
Postadmission adjustment and well-being. The Gerontologist, 32, 96-103.

Robison, J., Moen, P., & Dempster-McClain, D. (1995). Women’s caregiving:
Changing profiles and pathways. Gerontology, 503, $362-$373.

Rosenthal, C. J ., Martin-Mathews, A., & Mathews, S. H. (1996).Caught in the
middle? Occupancy in multiple roles and help to parents in a national probability sample
of Canadian adults. Journals of Gerontology, 518, $274-$283.

Sabelhouse, J. (1994). Deficits and other intergenerational transfers: Restoring the
missing link. Challenge, 37, 45-50.

181

Scanzoni, J., & Szinovacz, M. (1980). Family Decision-Making: A Developmental
Sex Role Model, Beverly Hills, CA: Sage.

Schorr, A. L. (1998-99). Income supports across the life course. Generations, 22,
64-7.

Sheehan, N. W., & Donorfio, L. M. (1999). Efforts to create meaning in the
relationship between aging mothers and their caregiving daughters: A qualitative study of
caregiving. Aging Studies, 13, 161-176.

Sherrell, K., Buckwalter, K. C. & Morhardt, D. (2001). Negotiating family
relationships: Dementia care as a midlife developmental task. Families in Society, 82,
383-392.

Silverstein, M., & Angelelli, J. J. (1998). Older parents’ expectations of moving
closer to their children. Journals of Gerontology, 5 63, $153-$163.

Silverstein, M., & Bengtson, V. L. (1997). Intergenerational solidarity and the

structure of adult child-parent relationships in American families. American Journal of
Sociology, 103, 429-460.

Silverstein, M., Chen, X., & Heller, K. (1996). Too much of a good thing?
Intergenerational social support and the psychological well-being of older parents.
Marriage & the Family, 58, 970-982.

Silverstein, M., & Parrott, T. M. (1997). Attitudes toward public support of the
elderly: Does early involvement with grandparents moderate generational tension?
Research on Aging, 19, 108-132.

Smerglia, V. L., & Deimling, G. T. (l997).Care-related decision-making
satisfaction and caregiver well-being in families caring for older members. The
Gerontologist, 37, 658-65.

Smith, C. C., Smith, M. F., & Toseland, R. W. (1991). Problems identified by
caregivers in counseling. The Gerontologist, 31, 15-22.

Soldo, B. (1996). Cross pressures on middle aged adults: A broader view.
Journals of Gerontology, 513, 8271-8273.

Sorensen, S., & Zarit, S. H. (1996). Preparation for caregiving: A study of
multigenerational families. Aging & Human Development, 42, 43-63.

Starrels, M. E., Ingersoll-Dayton, B., Dowler, D., & Neal, M. B. (1997). The

stress of caring for a parent: Effects of the elder’s impairment on an employed adult child.
Marriage & the Family, 59, 860-872.

182

Starrels, M. E., Ingersoll-Dayton, B., Neal, M. B., & Yamada, H. (1995).
Intergenerational solidarity and the workplace: Employees’ caregiving for parents.
Marriage & the Family, 5 7, 751-762.

Stein, C. H., Wemmerus, V. A. & Wade, M. (1998). “Because they’re my
parents”: An intergenerational study of felt obligation and parental caregiving. Marriage
& the Family, 60, 611-22. ’

Stephens, M. A., & Franks, M. M. (1995). Spillover between daughter’s roles as
caregiver and wife: Interference or enhancement? Journals of Gerontology, 503, 9-17.

Stephens, M. A., Townsend, A. L., & Martire, L. M. (2001). Balancing parent
care with other roles: Interrole conflict of adult daughter caregivers. Journals of
Gerontology, 563, 24-34.

Stern, S. (1995). Estimating family long-term care decisions in the presence of
endogenous child characteristics. Human Resources, 30, 55 1-5 80.

Stem, S. (1996). Measuring child work and residence adjustments to parents’
long-term care needs. The Gerontologist, 3 6, 76-87.

Stoller, E. P. (1983). Parental caregiving by adult children. Marriage & the
Family, 45, 851-858.

Stoller, E. P. (1990). Males as helpers: The role of sons, relatives and fiiends. The
Gerontologist, 30, 228-235.

Stoller, E. P., Forster, L. E., & Duniho, T. S. (1992). Systems of parent care
within sibling networks. Research on Aging, 14, 28-49.

Strawbridge, W. L., & Wallhagen, M. (1991) Impact of family conflict on adult
caregivers. The Gerontologist, 31, 770-778.

Streib, G. F., Folts, W. E., & LaGreca, A. J. (1985). Autonomy, power, and
decision-making in thirty-six retirement communities. The Gerontologist, 25, 403-409.

Stuifburgen, A. K. (1990) Patterns of functioning with chronically ill patients: An
exploratory study. Research in Nursing and Health, 13, 35-44.

Suitor, J. J ., & Pillemer, K. (1994). Family caregiving and marital satisfaction:
Findings from a 1-year panel study of women caring for parents with dementia. Marriage
& the Family, 56, 681-690.

Suitor, J. J ., & Pillemer, K. (1996). Sources of support and interpersonal stress in
the networks of married caregiving daughters: Findings of a 2-year longitudinal study.

183

 

Journals of Gerontology, 513, 297-306.

Thompson, L., & Walker, A. J. (1984). Mothers and daughters: Aid patterns and
attachment. Marriage & the Family, 46, 313-322.

Umberson, D. (1992). Relationships between adult children and their parents:
Psychological consequences for both generations. Marriage & the Family, 54, 664-674.

Voydanoff, P., & Donnelly, B. W. (1999). Multiple roles and psychological
distress: The intersection of the paid worker, spouse, and parent roles with the role of the
adult-child. Marriage & the Family, 61, 725-738.

Ward, R. A., & Spitze, G. (1998). Sandwiched marriages: The implications of
child and parent relations for marital quality in midlife. Social Forces, 77, 647-66.

Wolf, D. A., Freedman, V., & Soldo, B. J. (1997). The division of family labor:
Care for the elderly parents. Journals of Gerontology, 523, 102-109.

Wolf, D. A., & Soldo, B. J. (1994). Married women's allocation of time to
employment and care of elderly parents. Human Resources, 29, 1259-1276.

Zarit, S. H., Reever, K. E., & Bach-Peterson, J. (1980). Relatives of the impaired
elderly. The Gerontologist, 20, 649-655.

184

GENERAL REFERENCES

Crabtree, B. F., & Miller, W. L. Eds. (1999). Doing Qualitative Research, 2nd ed.
Thousands Oaks, CA: Sage.

Creswell, J. W. (1994). Research Design: Qualitative & Quantitative Approaches.
Thousands Oaks, CA: Sage.

Denzin, N. K., & Lincoln, Y. S. Eds. (1998). Collecting and Interpreting
Qualitative Materials. Thousands Oaks, CA: Sage.

Denzin, N. K,. & Lincoln, Y. S. Eds. (1998). Strategies of Qualitative Inquiry.
Thousands Oaks, CA: Sage.

Denzin, N. K., & Lincoln, Y. S. Eds. (2000). Handbook of Qualitative Research.
Thousands Oaks, CA: Sage.

F etterman, D. M. (1989). Ethnography: Step by Step. Newbury Park, CA: Sage.
Fielding, N. G., & Fielding, J. L. (1986). Linking Data. Beverly Hills, CA: Sage.

Gilgun, J. F., Daly, K., & Handel, G. Eds. (1992). Qualitative Methods in Family
Research. Newberry Park, CA: Sage.

Kvale, S. (1996). Interviews: An Introduction to Qualitative Research
Interviewing. Thousand Oaks, CA: Sage.

Merton, R. K., F iske, M., & Kendall, P. L. (1990). The Focused Interview: A
Manual of Problems and Procedures, 2nd ed. New York: The Free Press.

Miles, M. B., & Huberman, A. M. (1994). An Expanded Sourcebook : Qualitative
Data Analysis. Thousands Oaks, CA: Sage.

Rubin, H. J ., & Rubin, I. S. Eds. (1995). Qualitative Interviewing: The Art of
Hearing Data. Thousands Oaks, CA: Sage.

Strauss, A., & Corbin, J. (1998). Basics of Qualitative Research: Techniques for
Developing Grounded Theory, 2nd ed. Thousands Oaks, CA: Sage.

Weitzman, E. A., & Miles, M. B. (1995). A Software Sourcebook: Computer
Programs for Qualitative Data Analysis. Thousands Oaks, CA: Sage.

185

APPENDICES

186

APPENDIX A

I terview Guide

—’_f

How old is your mother or father? What is his/her diagnosis? How was this diagnosed?
What kinds of assistance does your mother/father need as a result of her/his dementia?
How long has your mother/father needed this assistance ?

Please describe any assistance that you have given to your mother/father since he or she
began suffering from dementia.

Please describe any assistance that you have given to your mother/father during the last
six months.

About how far away do you live from your mother/father? How far away did you live
during the time that she/he first began suffering from dementia? What changes have you
made in your living arrangements as a result of your parent's illness?

How long have you or your brothers and sisters had to make decisions for your
mother/father?

What kind of decisions has your family had to make?
Has your family had to make decisions about finances? Please describe these
arrangements.
Have you had to decide about guardianship? Please describe these arrangements.
Has your family used family care, in home care, adult day care, or nursing home
care? Please describe these arrangements.
(The following are used for each of the above that apply)
-How did your family go about making this decision? Please describe the
steps that took place. Describe any assistance you received from other
family members, professionals, medical personnel, staff, etc.
-Who brought it up? Who participated? Who did not?
-How did you reach an agreement?
-How did you resolve any conflict or disagreement that arose?
-What were the important factors that influenced this decision?
-What outcome did the family want to bring about?
-Did any family members seem to have more influence on the final
decision? Who? Why did it seem that they were more influential?
-What helped the family reach the decision? What impeded the family?
-Please describe your overall feelings about this decision and how it was
reached.

187

__ it“? -—_""P‘".. -4“!

APPENDIX A (continued)

Could you describe how decisions were made in your family as you were growing up?
What influence did this have on the way you approached the decisions the family has
made for your parent?

Could you describe how you and your spouse make decisions? What influence did this
have on the way you approached the decisions the family has made for your parent?

Could you describe how you and your spouse make or have made decisions regarding
your children? What influence did this have on the way you approached the decisions the

family has made for your parent?

How will your experiences with family decision-making for your mother or father
influence future decisions as he or she continues to age?

Do you have anything that you would like to add to what we have covered?

Do you have any questions of me?

188

 

APPENDIX B

Sample Letter

Dear Family Caregiver:

My name is Steve Yanca and I am a doctoral student in Family and Child Ecology
at Michigan State University. My purpose in contacting you is to ask if you and your
brothers and/or sisters would be willing to participate in my dissertation research on
family decision-making for elderly parents who suffer from dementia. I am looking at the
process that families use in arriving at decisions about family care, in home care, adult
day care, nursing home care, finances, and guardianship. I am also interested to see if
families use earlier experiences with decision-making or if they have to develop new
ways to do this. My goal is to shed light on how families are coping with these difficult
decisions. I hope that this study will stimulate others to find ways of helping families
face the challenge of caring for their elderly parents.

I am looking for families who are willing to share their experiences through
personal or telephone interviews. Your privacy will be protected throughout this project
to the maximum extent allowable by law. All interviews will take place at a time and
place that is convenient for you. I will reimburse you for any expenses you may incur that
we agree on beforehand. You may receive twenty-five dollars as compensation for your
time. You may choose to receive this in the form of a check, a gift certificate toward an
outing (such as dinner or a movie), or a contribution to a charity of your choice. You may
decline to receive compensation if you wish.

If you and your family are interested in participating or would like to know more,
please contact me at (517) 753-0893.

Thank you and I look forward to hearing from you.

Sincerely,

Steve Yanca

189

 

APPENDIX C

Demographic Information

Family #_ Member #_
Please check the appropriate response or fill in the answer to the question.
A. 1. What is your date of birth?
_Month _Year
A.2. What is your marital status? (Check all that apply)

Single Married Divorced

A.3. What is your occupation and your spouse's occupation?
Your occupation:
Your spouse's occupation:
A.4. How many hours a week do you and your spouse work in a typical week?
Your hours:
Your spouse’s hours:
A.5. How many children do you have?
A.6. How old is your youngest and oldest child?
Youngest___ Oldest—

A.7. What is your ethnic background?

A.8. What is your religious affiliation?

A.9. What is your highest level of education?

190

 

APPENDIX D

_Ipformed Consent

The purpose of this study is to explore family decision-making by adult sons and
daughters for elderly parents who have dementia. It will consider making decisions about
family care, in home care, adult day care, adult foster care, nursing home care, finances,
and guardianship. There also will be questions about decision-making in your family as
you grew up, in your marriage, and as a parent. The study will include in person or
telephone interviews with you and your brothers and sisters.

Please read this form carefully. It describes your rights as a participant in this
doctoral dissertation research project. Your signature indicates that you have read this
form, have been informed of your rights, and voluntarily agree to participate in this study.
It is estimated that it will take less than two hours of your time. The first interview is
estimated to be sixty to ninety minutes. This time can be broken up into shorter
interviews if you wish. A follow up interview is estimated to be twenty minutes.

You voluntarily agree to participate in this research project and agree to the
following terms: 1) You may receive twenty-five dollars as compensation for your time.
You may choose to receive this in the form of a check, a gift certificate toward an outing
(such as dinner or a movie), or a contribution to a charity of your choice. You may
decline to receive compensation if you wish. 2) You can refuse to participate or withdraw
from this research project at any time without penalty or loss of any benefits to which you
are entitled. 3) You can refuse to answer any question. 4) You can ask the researcher a
question at any time during the research process. 5) Your identity will be confidential. A
false name will be used in all written papers, both published and unpublished to disguise
your identity. Only the researcher will know the name assigned to you. Direct quotes and
descriptions of responses may be included in findings that are reported. 6) While it is not
the intent of the study to uncover sensitive information that would be harmful if revealed,
it is possible that you may say something that you do not want repeated or included in the
study. Ifyou feel that way you may ask that any or all information be excluded, not
quoted, or not used in the study. 7) You consent to audio taping all interviews. All tapes
will be destroyed or erased after the dissertation is complete. The researcher will retain
the transcripts of the audio tapes. 8) You consent to the publication of this study and
accept that your privacy will be protected to the maximum extent allowable by law.

If you have any questions or concerns about participating in this study, you may
contact Steve Yanca at (517) 753-0893 or write to him at: 343 Brown Hall, University
Center, MI 48710.

You may also contact the Chair of the University Committee on Research
Involving Human Subjects (UCRIHS) at Michigan State University, David E. Wright, at
(517) 355-2180 for questions about your rights as a human subject of research.

Signature of Participant Date

 

UCRIHS approval for this project expires

 

191

 

APPENDIX E

Confidentiality Agreement

You promise: I) to hold in complete confidence the information on the tapes provided to
you by Stephen J. Yanca and Michigan State University; 2) to safeguard the materials
while in your possession; and 3) to return the tapes and furnish the transcripts to Stephen
J. Yanca and Michigan State University without retaining any copies of them.

 

Name of Transcribing Source

 

 

Signature Date

192

 

   

ttttttttttt