THESIS

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thesis entitled .

PERCEIVED COMPETENCE AND POSITIVE
WELL-BEING IN FAMILY CAREGIVERS
OF RELATIVES WITH ALZHEIMER'S DISEASE

presented by

Anne Marie McKune

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PERCEIVED COMPETENCE AND POSITIVE WELL-BEING IN
FAMILY CAREGIVERS OF RELATIVES WITH ALZHEIMER'S DISEASE

BY

Anne Marie McKune

A THESIS
Submitted to
Michigan State University
in partial fulfillment of the requirements
for the degree of

MASTER OF SCIENCE IN NURSING

College of Nursing

1997

ABSTRACT

PERCEIVED COMPETENCE AND POSITIVE WELL-BEING IN
FAMILY CAREGIVERS OF RELATIVES WITH ALZHEIMER'S DISEASE

BY

Anne Marie McKune

This study examined the relationship between caregiver
perceived competence and caregiver positive well-being
in caregivers of a relative with dementia in a community
setting. This research was a secondary analysis of a 4-year
longitudinal study of family caregivers of dementia
patients funded by the National Institute of Mental Health
(2R01-MH41766). A cross-sectional design was used to
examine Wave 3 data from self-administered questionnaires
with sample size of 109. Using multiple regression analysis,
caregiver perceived competence was shown to be significantly
related to caregiver positive well-being. Implications for
nursing practice and future caregiving research are

presented.

To Angela and John with all my love

iii

ACKNOWLEDGMENTS

This paper would not have been possible without the
encouragement and patience from my children, mother, family,
professors and colleagues. I would like to thank Dr. Clare
Collins for her guidance and expertise on this subject
matter. I would like to extend a heart-warmed thank you
to Juli Balcolm for her friendship and assistance with
my paper.

A special thank you and and a deep expression of
respect to Dr. Barbara Given for her support not only with
this paper but through every endeavor I have encountered
through my graduate studies.

A thank you to Dr. Laura Struble for being on my thesis
committee and for her sharing of knowledge and enthusiasm
for learning.

A note of gratitude to Dr. Sharon King who was my
mentor through graduate studies and who shares my compassion

for the elderly.

iv

TABLE OF CONTENTS

LIST OF TABLES.0 ......... 0.0.0.0000... 00000000 0......Vii
LIST OF FIGURES... ....... .0.0....00.00 00000 .0.....00Viii

INTRODUCTION
Problem Statement... ........... ............. ...... 1
Purpose of the Study ............. .................5

THEORETICAL FRAMEWORK
Introduction......................................5
Background and Sociodemographics..................7
Stressors ..... ... ........ . ...... ..................7
Mediators........................................10
Outcomes................ ............ .............10

REVIEW OF THE LITERATURE
Perceived Competence.............................11
Conceptual Definition of Perceived Competence....15
Positive Well-Being..............................15
Conceptual Definition of Positive Well-Being ..... 19
Relationship Between Perceived Competence and
Positive Well-Being.........................19
Extraneous Variables.............................22
Significance of Proposed Study to SDAT Caregiving
Research and Advanced Practice Nurses.......23

METHODOLOGY
Research Design.............. ............. .. ..... 26
Data Collection..................................26
Limitations of the Study.........................27
Sampling Procedure and Criteria..................28
Measures and Instruments.........................29
Protection of Human Subjects.....................33

RESULTS
Sociodemographics of Sample ................... ...34
Extraneous Variables.............................36
Primary Study Variables..........................39
Answer to the Study Question.....................40

DISCUSSION
Interpretation Relative to Framework
and Literature.............................42
Limitations and Methodological Problems..........45
Recommendations for Future Research..............46
Implications for Nursing Practice................48

APPENDICES
Appendix A: Positive Well-Being.................53
Appendix B: Perceived Competence................54
Appendix C: UCRIHS Approval......... ............ 55

LIST OF REFERENCES...00.00.0.00..00..0.0.0.......00.0056

vi

Table

Table

Table

Table

Table

LI ST OF TABLES

Sociodemographic Characteristics of Caregivers
and Relative with SDAT.................35

Correlation Coefficients of Sociodemographic
Characteristics and Perceived Competence
and Positive Well-Being................37

ANOVAs of Sociodemographic Characteristics to
Perceived Competence and Positive
Well-Being..0...000.......0........0.0037

Means, Standard Deviations, Ranges and
Cronbach Alphas for the Scales Used
in the StUdy....00.0........00.0.......39

Multiple Regression Predicting Positive
well-Being in SDAT caregivers. o o o o o o o o .41

vii

LIST OF FIGURES

Figure 1. Caregivers' Stress Model....................6

Figure 2. Primary Focus Model of Present Study.......11

viii

INTRODUCTION

Senile Dementia of the Alzheimer's Type (SDAT) is
a progressive and irreversible dementia that afflicts
4 million American adults. If one considers the family
members who care for the individuals with SDAT, the number
of affected Americans would more than double. SDAT is
the 5th leading cause of total disability in the United
States and the 4th leading cause of death for adult
Americans (Kuhlman, Wilson, Hutchinson, and Wallhagen,
1991).

In response to current health care delivery trends,
the majority of SDAT individuals reside in the community
rather than in nursing homes. The person responsible
for the care of an individual with SDAT often needs to
help the demented patient with bathing, feeding, dressing,
transportation, and management of incontinence. This
type of responsibility for another adult has the potential
to cause high levels of stress. Dementia caregivers vary
in their levels of distress to the caregiving challenges
in SDAT (Schulz, O'Brien, Bookwala and Fleissner, 1995).
The SDAT caregiver may be faced with a multitude of

problematic situations. The caregiver may have to deal

2
with the relative with SDAT being actively resistant to
care offered, becoming agitated or violent, and in need
of constant supervision. When the care recipient's
functioning becomes impaired and chronic, the act of
caregiving may be conceptualized as a stressor. Cognitive
incapacity and increase in limitations of activities of
daily living (ADLs) are the most frequently cited hassles
and objective burden caregivers encounter (Kinney and
Stephens, 1989; Poulshcock and Deimling, 1984). The
caregiver may also face a lack of financial resources
and insurance coverage, inadequate formal assistance
programs in the community, competing family obligations
and outside employment and the lack of knowledge and skills
required to provide care for an individual with SDAT.
The caregiver's energy becomes depleted due to the chronic,
progressive deterioration of the SDAT individual over
time (Wilson, 1989).

Health care professionals (HCPs) need to understand
how family SDAT caregivers can be helped with the
caregiving role. The responsible person to provide the
care in the home is most often spouses or significant
others (Kuhlman et a1., 1991). The caregiver role may
have been assumed voluntarily out of a sense of dedication
and commitment to the loved one with SDAT or resulting
from a family decision-making process in which the role

was imposed on another resulting in an unwanted set of

3
role obligations (Given, Collins, and Given, 1988).
Caregivers as a group are selected for their roles within
their families largely by virtue of their psychological
strength (Haley, Levine, Brown, Berry, and Hughes, 1987),
or from situational and family pressures without
consideration of personality traits (Gold, Reis,
Markiewicz, and Andres, 1995). The level of perceived
competence of the primary caregiver to perform the tasks
of caregiving for the relative with SDAT is not a factor
in the decision—making process. HCPs may need to help
the family caregiver by increasing the caregiver's
knowledge and skills in the performance of daily caregiving
tasks and fostering the perception of competence of their
skills both in a quantitative and Qualitative manner.

The process of SDAT caregiving is frequently
conceptualized in the research literature using a stress
model. Caregiving stressors may translate into significant
and detrimental outcomes for the SDAT caregiver. One
of the outcomes of the caregiving process is the effect
on the caregiver's mental health (Pearlin, Mullan, Semple
and Skaff, 1990). The adverse effects have been researched
more than the positive effects and this is reflected in
the SDAT caregiving research. The documented adverse
effects range from anxiety, hostility, anger, and
depression to sleep disturbance, somatization and lower

life satisfaction (Given and Given, 1991; Kuhlman et al.,

1991; Schulz et al., 1995). The risk of adverse impact
to both physical health and mental health has been
associated with SDAT caregiving (Pruchno and Potashnik,
1989; Schulz et al., 1995; Zarit, Todd and Zarit, 1986).
Research comparing the mental health of SDAT caregivers
to the general population (matched for age and gender)
show that SDAT caregivers display a higher level of
negative affect, have more signs of psychological distress,
and use more psychotropic drugs (Pruchno and Potashnik,
1989).

While some SDAT caregivers are adversely affected
by caregiving, others seem to minimize damage to
themselves. These caregivers may reappraise caregiving
as a challenge and view the process as a personal growth
experience (Stephens, Norris, Kinney, Ritchie and Grotz,
1988). These caregivers embrace the gains which experience
yields. The SDAT literature documents caregivers who
have strong communication with social networks that provide
needed reinforcement and feedback (Ellis, Miller, and
Given, 1989), who are gratified with their caregiving
tasks (Motenko, 1989), and who cultivate beliefs that
something has been gained by their hardships of caregiving
(Aneshensel, Pearlin, Mullan, Zarit, and Whitlatch, 1995)
experience a greater sense of positive well-being. The
research literature has also shown that caregivers who

are involved in ADL care (Given, King, Collins and Given,

5
1988) and who provide more care to the dementia patient
(Lawton, Rajagopal, Brody and Kleban, 1992) find positive
rewards from the caregiving experience. HCPs can help
family SDAT caregivers by assisting the caregiver in
promoting a positive self-concept that will augment to
greater positive well-being. While the positive aspects
of caregiving have been explored, the relationship between
caregiver's perceived competence and caregiver's positive
well-being has not been investigated.

Purpose of the Study

 

This study will focus on the relationship between
the caregiver's self-perception of caregiving competence
to perform the needed tasks of caregiving for a relative
with SDAT at home and the caregiver's positive well-being.
This study will answer the question: Is there a
relationship between caregiver perceived competence and
caregiver positive well-being when cognitive functioning
and ADL assistance requirements of the relative with SDAT
are controlled?

THEORETICAL FRAMEWORK

Introduction

 

This secondary analysis will be guided by the model
of caregiving stress formulated by the research of Pearlin,
Lieberman, Menaghan and Mullan (1981) and refined by the
work of Pearlin et a1. (1990). In Pearlin's et a1. (1990)

conceptual model of Alzheimer's caregiving stress (Figure

6
1), there are 4 main domains: (1) background, family
and network composition, sociodemographic characteristics
of the patient and caregiver and program availability
in the community; (2) stressors distinguished as primary
and secondary; (3) moderators or mediators; and (4)

outcomes.

 

 

 

 

 

 

 

 

 

 

r l.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

BACKGROUND PRIMARY SECONDARY SECONDARY
AND STRESSORS ROLE INTRAPSYCHIC OUTCOMES
CONTEXT WaSTRAINS STRAINS 'T
l l
JMEDIATORS]

 

 

 

Figure 1. Caregivers' stress model (Pearlin et al., 1990).

This caregiving stress model displays dynamic
characteristics that treat stress not from a unitary
phenomenon or a single perceived stressful situation but
from caregivers' lives becoming organized and changing
over time and the effects of this mix of circumstances,
experiences, responses and resources on their self
judgments (Aneshensel et al., 1995; Pearlin et al., 1981).
Caregiving stress is a complex process with numerous
potential variables that may impact caregiver well-being.

Any aspect of the first three domains have the potential

7
and capability of effecting the outcome to the process
of SDAT caregiving. This theory shows how multiple
situations such as change in patient status or
experience and skills in caregiving may effect the
emotional wellebeing of the caregiver in the caregiving
process. The primary interest of this study is to examine
the relationship between caregiver perceived competence
and positive well-being while taking into account the
possibility of aspects from other domains in the model
influencing the relationship.

Background/Sociodemographics

 

This domain contains three elements:
(1) characteristics of the caregiver such as age, gender,
education, employment status, marital status, years of
caregiving and living arrangement with the SDAT patient;
(2) social support network that represents the totality
of one's relationships and not actual assistance which
the caregiver may use; and (3) availability and
accessibility to community-based formal programs. Any
aspect of this domain may influence the relationship of
stressors in SDAT caregiving and the outcome.

Stressors

 

The act of caregiving in and of itself is not the
sole source of stress in SDAT. The variation in
consequences of stressors among caregivers is influenced

by caregiver's positive self-concept, health and behavior

8

(Pearlin et al., 1990). Stress arises when demands exceed
resources. Stressors as defined by Pearlin et al. (1990)
are "the problematic conditions, experiences, difficult
circumstances and activities for people that threaten
them, thwart their efforts, fatigue them and defeat their
dreams" (p. 586). In SDAT, the patient's status of waning
cognitive abilities exerts pressure on the caregiver's
own sense of self and eventually on the caregiver's
emotional well-being (Aneshensel et al., 1995). As the
provision of care to assist with ADLs becomes more
extensive and more frequent, the caregiver may become
overwhelmed and the emotional well-being of the caregiver
becomes affected (Aneshensel et al., 1995). Patient
status variables such as cognitive incapacities and ADL
requirements are considered to be primary objective
stressors in Pearlin's et al. (1990) theory. The original
set of hardships in the caregiving stress process are
subjective and objective primary stressors. Primary
stressors may lessen or intensify over time. Primary
objective stressOrs generate primary subjective stressors
like the loss of balance, loss of intimacy, and the loss
of reciprocity in the SDAT caregiver/patient relationship
and the overload of the caregiving role.

According to Pearlin's et al. (1990) theory, primary
stressors proliferate into secondary stressors of role

strains and intrapsychic strains. Secondary stressors

9
function as the channel through which primary stressors
come to damage emotional well-being (Aneshensel et al.,
1995). Secondary role strains are the roles and activities
outside the caregiving situation like conflict in the
family, economic strains, work conflict and constriction
of social and recreational life.

The demanding nature of objective primary stressors
leads to intrapsychic strains. Intrapsychic strains are
internal dimensions of self-concept (Pearlin et al., 1990).
Under the relentless and progressive nature of SDAT, the
caregiver's self-concept may be diminished or damaged
leaving the caregiver vulnerable to alterations in
well—being (Pearlin et al., 1990). According to Pearlin's
et al. (1990) theory, three intrapyschic strains may occur:
loss of self, lack of caregiver competence and absence
of caregiving gains. The primary interest in this study
is the self-perception of caregiver competence. Competence
deals with the caregiver developing a self-evaluation
of how well he/she performs the role of caregiver
(Aneshensel et al., 1995). The absence of competence
causes an alteration in the positive elements of
self-concept and feelings of not being competent as a
caregiver. Thus, doubt in one's own competence in the
caregiving role leaves the caregiver vulnerable to an
alteration in emotional well-being. Both primary and

secondary stressors have the potential to produce

10
deleterious effects and the terminology is not intended
to denote the degree of importance. The variances in
the severity of secondary stressors might help explain
the differences in outcomes (Aneshensel et al., 1995).

Mediators

 

Mediators modify or regulate the causal relationship
between stressors and outcomes. Mediators are: coping,
social support, financial endowment and mastery (or
self-efficacy). The mediators limit the proliferation
of secondary stressors by buffering or cushioning the
effect of the severity of the stressor. Mediators may
have the capacity to limit the proliferation of secondary
stressors. Mediators may explain outcome variability for
the effects of buffering can be judged by looking directly
at the outcome (Pearlin et al., 1990).

Outcomes

Outcomes are the effects or consequences of stressors.
Care-related stress outcomes are usually observed as
involving the individual's physical health and emotional
well-being (either positive or negative); the ability
to sustain themselves in their social roles, including
family relations; and the yielding of caregiver activities.
The element of emotional distress is likely to become
apparent first; and then, if the stress persists, physical
well—being falters (Pearlin et al., 1990).

For the purpose of this study, the primary focus

11
of the caregiver stress model of Pearlin et al. (1990)
has been displayed to examine the relationship between
caregiver perceived competence and caregiver positive
well-being (Figure 2). This segment of the caregiving
stress model depicts the caregiver's perception of whether
or not the level of patient demands are stressful. The
caregiver must evaluate his/her perceived competence level
and deal with the level of demands. If the caregiver
perceives a satisfactory level of competence, then the
outcome may not alter the caregiver's positive well-being.
If the level of perceived competence is not satisfactory

to the caregiver, then a deleterious outcome may develop.

 

 

 

 

Secondary Intrapsychic Outcomes
Strains Mental Health:
Situational: Positive
Perceived Competence Well-Being

 

 

 

 

 

 

 

Primary Objective

Stressors
Cognitive Incapacity
ADLs Dependence

 

 

 

Figure 2. Primary focus model of present study.

REVIEW OF THE LITERATURE

Perceived Competence

 

The daily caregiving tasks for a SDAT relative may

range from assisting with dressing, bathing and feeding;

12
to possibly dealing with new and unfamiliar chores like
balancing a checkbook and preparing meals; to supervising
and managing unpredictable and/or violent behavior. Care
demands shift over time as the care recipient progresses
in the level of dementia but the demands do not necessarily
increase in intensity or occurrence (Zarit et al., 1986).
A person with moderate dementia may exhibit wandering
but low assistance requirements with activities of daily
living (ADLs) and a person with severe dementia may have
no desire to wander but requires total physical care.
These shifts in care demands may dictate the caregiver
to gain new skills or increase their degree of competence
in the different areas of caregiving.

There is limited research on the tOpic of perceived
competence of a caregiver giving care to a relative with
SDAT. Wilken, Altergott and Sandberg (1996) examined
the influence of feminine and masculine sex-role
orientation of spousal caregivers on the self-perception
of competence while caring for confused partners. They
concluded that as cognitive incapacity increases, the
self-perceptiOn of competence decreases. They suggest
that greater caregiver competence can be predicted by
masculine sex-role traits like assertiveness,
competitiveness and control.

The concept of control is discussed in the SDAT

literature as mastery. Mastery has been defined by Pearlin

13

et al. (1990) as "the control individuals feel they are
able to exercise over forces importantly affecting their
lives" (p. 589). In Pearlin's et al. (1990) theory, mastery
is a personal psychosocial resource equated with
self-efficacy and internal locus of control where as
caregiver competence is the self—evaluation of how well
one performs the role of caregiver and is denoted as an
intrapsychic strain. Caregiver competence is an element
of self-concept and involves skill enhancement. Mastery
is an issue of control over environment and situations
has been shown in the literature to exert positive effects
on emotional well-being and offsets the effects of
care-related stressors (Aneshensel et al., 1995). Pagel,
Becker and Coppel (1985) have linked the loss of mastery
or the perceived loss of control with depression in family
caregivers of SDAT patients. Lawton, Kleban, Moss, Rovine
and Glicksman (1989) defined caregiving mastery as the
general feeling of competence in the caregiving role and
most closely corresponds with Pearlin's et al. (1990)
concept of caregiver competence. For the purpose of this
study, Lawton's et al. (1989) concept of caregiving mastery
will be equated with caregiver perceived competence.

Not all caregivers have the same degree of skills
to manage tasks. The caregiver's perception of whether
or not the task at hand is burdensome or stressful is

referred to as caregiving appraisal. Lawton et al. (1989)

14
defined the term as "the cognitive and affective appraisals
and reappraisals of the potential stressor and the efficacy
of one's coping efforts" (p. P61). One's perception of
competence in performing caregiving tasks is important
in managing the caregiver role. Management involves the
use of problem-solving skills, adaptability, the use of
informal and formal support networks and minimizing
disruptive patient behavior, family conflict and personal
stress (Pallett, 1990).

In longitudinal analysis, Zarit et al. (1986) suggest
that caregivers may tolerate problem behaviors over time.
Caregivers learn to manage problems more effectively or
they simply adapt and do not let the problems bother them
anymore. Therefore, perhaps this growing tolerance may
induce underestimation of the caregiver's perception of
competence.

Collins, King, Given and Given (1994) researched
factors that influence community service use among family
caregivers of SDAT patients. They proposed that two
important internal cues to seek services are the
caregiver's appraisal of competency and psychological
distress. Actual competency to manage the changing and
challenging situation (i.e., patient is unable to ask
for assistance to use the bathroom) may not be as high
as the caregiver perceives it is or the caregiver may

accurately perceive competency levels and does not need

15

any assistance from informal and/or formal services.
An accurate perception of the limitations of one's
competence is a strong incentive to seek help from others
in the caregiving situation.

Caregiver's perception of competence is enhanced
by the feedback that others provide. The more sources
of possible positive feedback the caregiver has, the less
impact a negative evaluation of caregiving skills will
have (Skaff and Pearlin, 1992).

Conceptual Definition of Perceived COmpetence

 

For the purpose of this study, the concept of
perceived competence is defined as the self-appraisal
by the caregiver of the extent to which they perceive
their caregiving efforts to be adequate in performing
needed tasks.

Positive Well-Being

 

The majority of the literature in caregiving research
focuses on the negative outcomes in the domain of mental
health. Negative affect as the outcome of the SDAT
caregiving process is usually conceptualized in the
literature as depression, the decrease of life
satisfaction, psychological distress or negative affect
(George and Gwyther, 1986; Haley et al., 1987; Pagel et
al., 1985; Pruchno and Potashnik, 1989).

There is an increasing amount of literature on the

positive aspects of SDAT caregiving. Positive outcomes

16
to the SDAT caregiving process have been conceptualized
in the research literature as caregiving satisfaction,
caregiving uplifts and perceived positive rewards (Kinney
and Stephens, 1989; Lawton et al., 1989; Montenko, 1989).
Caregiving satisfaction encompasses enjoying being with
the care—recipient or helping makes the caregiver feel
closer to the care-recipient (Lawton et al., 1989).
Caregiving uplifts are seeing the care-recipient calm
or the care-recipient showing affection (Kinney and
Stephens, 1989). Perceived positive rewards are an
opportunity to repay a previous debt to the care-recipient
(Montenko, 1989). This study will focus on the positive
aspect in the global mental health domain.

In the global mental health domain, negative emotional
states and positive well-being are subjectively determined
by the caregiver's perception of the stress of SDAT
caregiving. The subjective measure of well-being has
more conceptual overlap with mental burden than objective
measures of well-being. Positive well-being shows more
mental subjective well-being and depression shows less
mental subjective well—being (Stuckey, Neundorfer and
Smyth, 1996). Therefore, positive well-being and
depression are related mental health outcomes but not
identical and should not be viewed as a positive-negative
continuum. Rather, different aspects of mental health

differ in the degree of caregiver perception of stress

17

or burden (Lawton et al., 1992; Stuckey et al., 1996).

Caregivers show great individual variability in their
reactions to the stress of SDAT caregiving (Haley et al.,
1987). In longitudinal SDAT caregiving research, some
dementia caregivers experienced burnout while others
improved their emotional well-being (Zarit et al., 1986).
The longer a caregiver gives care, the better the
caregiver's mental health may be either due to the
"survival" effect (Gilhooly, 1984); the caregiver has
had greater time to learn to cope and adjust (Zarit et
al., 1986; Collins, Stommel, Wang and Given, 1994); or
the caregiver has accepted the situation and Chose to
make the best of the situation (Williamson and Schulz,
1993).

A sense of well-being can be positively influenced
by social networks of the SDAT caregiver. Ellis, Miller
and Given (1989) studied the relationship between
communication and positive well-being in care providers
for patients with SDAT. They identified a casual
relationship between family abandonment and involvement
in ADLs which could lead to the prediction of social burden
and isolation for the SDAT caregiver. They concluded
that the perception of increased social support through
communication of the social networks that the caregiver
uses leads to greater positive well-being. Thus, positive

well—being can be achieved for SDAT caregivers if

18

communication is effective with the social support network.

Motenko (1989) defined caregiving as "an expression
of the bonds that tie people to their loved ones. This
expression is necessary to maintain continuity in values,
self-respect, and identity" (p. 166). Not all SDAT
caregivers have feelings of moral responsibility or feel
an emotional bond to the SDAT relative. Motenko (1989)
concluded that wife caregivers who feel more gratified
with their caregiving tasks, such as time for self, ADLs
assistance to the relative and emotional support, had
experienced an increase in positive well-being. Therefore,
a feeling of gratification can be achieved from SDAT
caregiving and positively influence well-being.

Caregivers who engage in the self-appraisal and
reappraisal process can experience a greater positive
affect. By cultivating beliefs that something has and
can be gained by the hardships of SDAT caregiving
(Aneshensel et al., 1995), and by redefining an event
to derive mental stimulation or personal growth (Stephens,
et al., 1988), the caregiver is able to experience a
greater positive affect and is able to identify beneficial
aspects of their caregiving experience.

The involvement in ADLs for the relative with SDAT
has shown to influence caregiver positive well-being.
Caregivers who provide more care and who are more heavily

involved with the care may achieve positive well-being

19
by the increase chance for interaction with the individual
with SDAT (Given et al., 1988; Lawton et al., 1992).
Conversely, high care recipient needs can also lead to
stress and adversely effect emotional well-being.

To safeguard against the potential detrimental toll
caregiving may take on SDAT caregivers, it is important
to search for ways that will nurture the caregiver's
positive well-being. HCPs must assist the caregiver in
fostering a sense of accomplishing something positive
even if the perception of stress can not be altered.

Conceptual Definition of Positive Well-Being

 

For the purpose of this study, the concept of positive
well-being is taken from the 2-factor higher order model
designed by Veit and Ware (1983). The 2-factor model
was designed to measure general psychological distress
and psychological well-being. Positive well-being will
be defined as the combination of general positive affect
and emotional ties; it is the feeling of cheerfulness
and having interest in and enjoyment of life. Positive
well-being is having more subjective well-being than less
(ie, depression).

Relationship Between Perceived Competence and Positive

 

Well-Being

 

The relationship between caregiver perceived
competence and caregiver positive well-being is a critical

component in the caregiving process but has received little

20
recognition in the SDAT caregiving research. Haley,
Levine, Brown and Bartolucci (1987) studied 44 primary
caregivers of senile dementia relatives and 44 matched
control caregivers who were not caregivers of impaired
relatives. The study concluded that caregivers who had
increased levels of perceived competence in managing care
activities and behavioral problems also displayed decreased
levels of depression and physical health problems. The
Haley et al. (1987) study should have been the stepping
stone for further research on the relationship between
perceived competence and well-being, but very limited
research has been done up to this point in time on this
particular relationship.

In order for a caregiver to successfully cope and
manage with the chronically stressful situation of
caregiving for a relative with SDAT, they must be able
to identify those aspects of care which they perceive
they are competent to handle and those tasks which they
can not perform to their satisfaction. Pearlin's (1990)
theory illustrates that stressors that evolve directly
from providing care may give rise to stressors outside
the boundaries of caregiving and disrupt the self-concept
of the caregiver. The perceived competence a caregiver
possesses is the reaction to the caregiving process; an
individual, specific process variable that flows from

caregiving. The caregiver may never have had to face

21

such tasks or situations as those associated with SDAT
caregiving before in the caregiver's lifetime. A person
is never fully cognizant of her/his capabilities or skill
level until she/he encounters an unfamiliar situation;
ie, SDAT caregiving.

A major outcome to the caregiving process, as
predicted by Pearlin's (1990) theory of caregiving, is
the alteration in the mental health of the SDAT caregiver.
Positive well-being is a global mental health outcome
that is not caregiving specific like the process variable
of caregiver perceived competence. Positive well-being
may be modified during everyday life stresses and burdens
and therefore is not caregiving specific.

The caregiver's needs are based on a balance of gains
and losses in caregiving, both of which the caregiver
may experience at the same time. Lawton, Brody and
Saperstein (1991) believe the caregiving themes of ego
challenge and continuity influence perceived competence.
Some caregivers may perceive caregiving for a relative
with SDAT as a challenge and a test of personal competence
to perform the required caregiving tasks well and view
caregiving as an important stage in adult development.
In a social context, the caregiver role provides continuity
for the caregiver, strengthens the sense of competence
as a caregiver and is an important source of security.

Both of these caregiving themes serve to increase

22
self-feelings of caregiving satisfaction and positive
affect.

This secondary analysis on the relationship between
caregiver perceived competence and caregiver positive
well-being is in much need with the limited research
available on this relationship. This study will advance
our knowledge in SDAT caregiving research by determining
if a relationship exists between caregiver perceived
competence and caregiver positive well-being when
controlling for cognitive incapacity and ADL assistance
requirements.

Extraneous Variables

 

As the cognitive abilities of the SDAT patient decline
and the level of caregiving involvement to assist the
SDAT patient in ADLs rises, a threat to the well-being
of the caregiver in respect to emotional and physical
well-being and perception of self-concept becomes likely.
The SDAT caregiving literature has well documented that
the variables of cognitive incapacity and ADL assistance
requirements are the most likely variables to influence
the relationship between well-being and self-concept of
the SDAT caregiver (Aneshensel et al., 1995; Deimling
and Bass, 1986; Kinney and Stephens, 1989; Poulshock and
Deimling, 1984; Skaff and Pearlin, 1992).

Pearlin's et al. (1990) caregiving stress theory
denotes cognitive incapacity and ADL assistance as primary

stressors which can proliferate into secondary stressors

23
and influence the outcome of SDAT caregiving. The other
two major domains of the theory, background and
sociodemographic characteristics and mediators, can also
effect the caregiving process and alter the outcome to
SDAT caregiving. Even though the domains of background
and sociodemographics and mediators are a part of the
stress model of Pearlin et al. (1990), they are not the
primary focus of this study.

The degree to which an individual with SDAT is unable
to perform a minimal set of intellectual tasks and the
degree to which that same individual is unable to perform
ADLs for self increases the potential for the creation
of compounded stress on the caregiver. This objective
stress leads to the likelihood of producing a lack of
competence as a caregiver and developing a deleterious
outcome from the caregiving experience (Pearlin et al.,
1990). Therefore, since cognitive incapacity and ADL
assistance requirements are the extraneous variables that
are most likely to influence the relationship between
caregiver perceived competence and caregiver positive
well-being when SDAT is involved, this secondary analysis
will control for these two extraneous variables.

Significance of Proposed Study to SDAT Caregiving Research

 

and Advanced Practice Nurses

 

The significance of this study to the advancement
of our knowledge regarding the relationship between

caregiver perceived competence and caregiver positive

24
well-being is described in four main areas.

First, in present SDAT caregiving research there
is a tremendous amount of confusion in the
conceptualization and operationalization of variables
used in caregiving literature. The differences among
researchers in this respect makes for inconsistent and
discontinuous knowledge. Positive well-being has been
conceptualized in other research studies by positive
affect, life satisfaction or morale. This study dealt
with the issue by using measurement scales that were
designed to operationalize the specific concepts examined
in this study.

Second, some caregiving research studies that pertain
to SDAT used caregivers that provided care to personswith
mental impairment or physical disability and generalized
the results of their study to the SDAT caregiver
population. The SDAT caregiver population is a very
qualitatively unique population. This study furthers
SDAT caregiving research by using SDAT caregivers only
and generalizing the results to the population studied.

Third, other SDAT caregiving research studies have
used relatively small sample sizes; mainly a sample size
less than 50. This secondary analysis will use a sample
size of greater than 100 which will enhance the power
of the study.

Fourth, caregiving research pertaining to SDAT has

given little, if any, attention to the relationship between

25
caregiver perceived competence and caregiver positive
well-being. SDAT caregiver research has examined the
concept of caregiving mastery and emotional well—being
but not individual caregiver competence. This study will
constitute the first, to my knowledge, where caregiver
perceived competence and caregiver positive well-being
will be directly correlated in an SDAT caregiver
population.

Advanced practice nurses (APNs) with their diverse
capabilities as educators, change agents and Clinicians
will be able to use this study as a research base to aim
intervention programs at easing secondary stressors that
might relieve the caregivers of some of the deleterious
outcomes and preserve positive well—being. APNs are able
to influence the caregiving situation by assisting the
caregiver to focus on aspects that can be modified and
manage aspects of care that may alter a positive
experience. APNs are able to assist the caregiver in
developing an awareness of declining competency to manage
the caregiver role and can educate the caregiver on how
to build on the perceived competency of the caregiver.
to enhance the caregiver's skills and to detect the
appropriate time to discuss problems so the caregiver
can avoid the "too little, too late" syndrome. These then

represent the significant features of this research.

26
METHODOLOGY

Research Design

 

A cross-sectional correlational design will be used
to determine if a relationship exists between the two
primary study variables: caregiver perceived competence
and caregiver positive well—being in caregivers who care
for a relative with Alzheimer's disease at home. The data
for this secondary analysis was taken from the 4-year
longitudinal study "The Impact of Alzheimer's Disease
on Family Caregivers" (grant #2R01-MH41766 funded by NIMH)
whose principal investigator was Dr. Clare Collins at
Michigan State University. One of the specific aims of
the original study was to compare the longitudinal course
of depression among residential caregivers, bereaved
caregivers, and caregivers who institutionalized their
relative.

Data Collection

 

Telephone interviews of 1.0 to 1.5 hours in length
and mailed self-administered questionnaires were used
to collect the information from the caregivers in the
original study. For this secondary analysis, data will
be used from the self-administered booklets (SABs) of
wave 3. Wave 3 designates the third time in the 4 year
study that the caregivers were asked to give information
via the telephone interview and by filling out the SAB.
Wave 3 was approximately 36 months from the initial data

collection. Wave 3 was selected because it was the only

27
wave in the original study in which the Perceived
Competence scale was administered. These SABs were mailed
questionnaires that were independently filled out by the
participants.

Limitations of this Study

 

This particular study design was chosen because the
study will hope to explain and determine if a relationship
exists between the variables. One of the limitations of
the study design is the nonprobability sampling plan used;
the use of probability sampling would have increased the
external validity of the study and increase the
generalizability of the results. Another aspect of the
study that might possibly be viewed as a limitation is
the addition of 101 participants at the end of wave 2
data collection in the original study. This addition of
participants may be an issue of measurement bias. Since
the new 101 participants had not gone through the interview
process at the prior wave, they may view the interview
process differently. The participants at the prior wave
had already been exposed to a previous telephone interview
and self-administered questionnaire.

A major limitation in this secondary analysis is
that as the person doing the secondary analysis, this
researcher had no control over the measures used or how
the data was collected. A secondary analysis of data limits
the researcher to information obtained by the principal

investigator. Finally, the use of cross-sectional analysis

28
makes it difficult to show causal order of the variables
in the relationship.

Sampling Procedure and Criteria

 

The sample for this quantitative study was a
volunteer, nonrandom sample of caregivers who were
recruited for a 4-year longitudinal study of the experience
of providing care to a family member with Alzheimer's
disease. A letter describing the study was distributed
to potential subjects identified from mailing lists of
the Alzheimer's Association, the Michigan Association
of Adult Day Care Centers, and health agencies in southwest
Michigan. The letter was accompanied by a postage paid
card to be returned to the research staff by individuals
interested in participation.

Potential caregiver/relative dyads who made contact
with the research staff were telephoned and screened for
the following criteria: (1) the relative was at least
55 years old or above; (2) the relative was dependent
in at least one instrumental activity of daily living
(IADL) and one activity of daily living (ADL); (3) the
caregiver reported that the relative had a medical
diagnosis of Alzheimer's disease or related dementia;

(4) the caregiver was self-identified as the family member
who assumed primary responsibility for the relative with
dementia; and (5) the relative resided in the community
setting at the time of entry into the study.

For this secondary analysis, the sampling criteria

29
was: (a) caregivers must have completed wave 3 by
returning the completed SAB and (b) the caregiver must
have taken care of the relative in the home setting at
the time wave 3 was administered.

Measures and Instruments

 

For the purpose of this study, caregiver positive
well-being was operationalized by the Positive Well-Being
instrument as developed for the Rand Corporation (Veit
and Ware, 1983). The Positive Well-Being is a 10 item
questionnaire that is measured on a 4-point Likert scale.
The higher score one obtains, the more positive well-being
one has. The total possible score range was 0-40. The
self-administered questionnaire asked participants to
indicate how often in the past month they had experienced
feelings of calm and peacefulness, felt free from tension,
been a happy person, satisfied with personal life, felt
fresh and rested, expected to have an interesting day,
enjoyed the things that she/he did and felt hopeful about
the future. The participants were to chose the answer
closest to the way she/he had been feeling as: (1) rarely
or none of the time; (2) some of the time; (3) most of
the time; and (4) almost all of the time.

Veit and Ware (1983) showed a very strong internal
consistency for this scale. The Mental Health Inventory
designed by Veit and Ware (1983) was field tested at six
different sites with a combined N of 5,089 which was a

noncaregiving sample of all adults. The Cronbach's alpha

30
for the psychological well-being factor was .92. For the
1-year stability analysis of the scale, an identical
version of the MHI was field tested to a subsample at
each site with an N = 3,525. For this 1-year interval,
the stability coefficient was .63 for the psychological
well-being factor (Veit and Ware, 1983).

For the purpose of this study, caregiver perceived
competence was operationalized using a revised S-item
scale from the Caregiving Mastery (ie, perceived
competence) 6—item scale designed by Lawton et al. (1989).
Since Lawton's et al. (1989) caregiving mastery scale
has not been extensively used, this researcher was faced
with the dilemma as to whether or not to use all or
portions of his original scale. The evidence needed to
support this researcher's decision to use the competence
scale came from Dr. M. P. Lawton (personal communication,
July 1, 1996) and information on the reliablity score
he sent this researcher on an unpublished sample of N
= 580 using his original scale. The Cronbach alpha for
his unpublished sample was .71. For this secondary
analysis, the Lawton et al. (1989) competence scale was
reanalyzed using the sample of N = 96 from the original
study. The Cronbach alpha was .73 for the 6-item scale;
and after the deletion of item 3 ("I should be doing more
for ."), the reliability improved to .76. It was
decided by this researcher that the revised 5-item

perceived competence scale showed good internal

31
consistency.

The issue of face validity was analyzed. A major
advantage of using the Lawton et al. (1989) competence
scale is the strong theoretical fit between my conceptual
definition of caregiver perceived competence and Lawton
et al. (1989). Paraphrased from an earlier definition,
caregiver perceived competence is a self-perception to
judge one's own ability to perform needed tasks during
the caregiving process (Lawton et al., 1989).

The S-item competence scale chosen taps the concepts

of uncertainty to help the patient, knowing that the
patient is getting proper care when the caregiver is taking
care of the patient, ability to handle most of the problems
in the care of the patient, pretty good at figuring out
what the patient needs; and feeling that she/he as
caregiver could be doing a better job in caring for the
patient. The self-perceived ability of the caregiver
to perform certain duties/tasks for their relative with
SDAT was scored on a 5-point Likert scale as: (1) strongly
disagree; (2) disagree; (3) neither agree nor disagree;
(4) agree; and (5) strongly agree. The perceived
competence scale was only used in the SABs of wave 3.
The higher the positive score, the higher the perceived
competence is for the caregiver who cares for a relative
with SDAT. The total possible score range was 0-25.

For the purpose of this study, patient ADL

requirements were measured by using the subscale of ADLs

32
from the Caregiver Involvement Inventory which was designed
in the original study (Final Report, 1987). The caregiver
involvement inventory consists of 34-items that measures
3 sets of tasks the caregiver may be involved in to assist
the SDAT patient. The tasks include: (1) activities
of daily living (ADLs); (2) instrumental activities of
daily living (IADLs) and; (3) health care activities which
are specific medical treatments. The ADL subscale included:
eating, dressing, bathing, grooming, toileting and walking.
Caregivers were asked if the care recipient required
assistance with the activity in a yes/no format producing
a nominal measure, a simple counting of activities. The
greater number of yes responses, the greater the number
of ADLs in which the relative required assistance.

For the purpose of this study, patient cognitive
status was measured by using the subscale of Cognitive
Behaviors that was taken from the Behavioral Symptoms
of Alzheimer's Patients scale designed in the original
study (Final Report, 1987). The scale was developed after
the review of the SDAT literature failed to show an
existing measure that incorporated the full range of
behavioral problems common among persons with dementia.

The Cognitive Behaviors subscale used a 4-point Likert
response measure with (0) not at all; (1) sometimes; (2)
most of the time; and (3) always. The caregiver was asked
7 items on how frequently the relative with SDAT displayed

the following behaviors: unable to recognize familiar

33
people, seem confused, forgot what day it is, get the
present mixed up with the past, forget where she/he is,
forget important or recent events, and repeat
herself/himself or ask the same question over and over
again. The higher the score, the greater the cognitive
impairment the relative with SDAT had. In the original
study, the Cronbach's alpha with an N = 307 was .91; at
Phase 1 with an N = 120, the Cronbach's alpha was .82;
and at Phase 2 with an N = 93, the Cronbach's alpha was
.79 for this subscale.

Protection of Human Subjects

 

The caregivers involved in the original study were
informed of the purpose of the study; and if they chose
to participate, signed an Institutional Review Board
approved consent form. Verbal consent was obtained from
each caregiver at each subsequent data collection point.
The original study was reviewed and approved by the
University Committee on Research Involving Human Subjects
(UCRIHS) at Michigan State University. There were no
identified risks to the caregivers in the original study.
Confidentiality was provided by the use of case numbers
versus names on all questionnaires.

For the purpose of this secondary analysis, this
author obtained approval from UCRIHS at Michigan State
University before analyzing the data (Appendix C). This
researcher had access to data only via case numbers on

a disk that was obtained after receiving approval from

34
UCRIHS. The disk contained no identifying information
which safeguarded confidentiality and prevented this
investigator from identifying any individual who
participated in the original study.

RESULTS

Data were analyzed using the SPSS statistical program.

The alpha level for all used significance tests was p=.05
unless otherwise indicated.

Sociodemographics of Sample

 

Univariate statistics of mean, standard deviation,
and range were used to organize the sociodemographic
information of the SDAT caregivers and the SDAT relatives
as shown in Table 1. Several characteristics were
dichotomous and are also shown as percentages. The
Characteristic of race in the original study showed 93%
Caucasian with only 7% as minority patient/caregiver dyads
so that characteristic is not included. The caregiver
sample (N=109) resembles other research SDAT caregiver
samples as being mostly female (77%), over the age of
60 (mean 62.5, SD=10.7), living with the SDAT relative
(87%) and related to the SDAT relative as a spouse (72.5%).
The SDAT caregivers where not employed (74.7%) at the
time of data collection of Wave 3. The educational status
of the caregivers shows 84% are high school graduates
or greater with 24% being college graduates and/or
professionals. The duration of care ranged from 6 months

to 20 years which depicts SDAT as a Chronic disease.

35

Table 1. Sociodemographic Characteristics of Caregiver
and Relative with SDAT

 

 

Relative Caregiver
N=109 N=109
Age (Mean, Std. Dev.) 72.1 (8.3) 62.6 (10.7)
Range 56-91 32-82
Gender Male 59 (54%) 25 (23%)
Female 50 (46%) 84 (77%)
Marital Status
Married 84 (77%) 98 (90%)
Single 2 ( 2%) 6 (5.5%)
Widowed 20 (18%) -
Separated 1 ( 1%) -
Divorced 2 ( 2%) 5 (4.5%)

Duration of Care
(in months)

Living Arrangements*
with relative
without relative

Caregiver Educational
Level
less than High School
HS graduate
some college
college grad/professional

Caregiver Employment
Status
employed
not employed

Caregiver Relationship
spouse
child
other

60.3 (42.4)
Range 6-240

95
12

17
30
36
26

28
81

79
20
10

(87%)
(13%)

(15.6%)
(27.5%)
(33.1%)
(23.8%)

(25.6%)
(74.4%)

(72.5%)
(18.3%)
( 9.2%)

 

*Missing 2 from sample total of N=109

36
The average duration of care was 5 years (SD=3.5 years)
and 47.7% caring for the SDAT relative for 5 years or
greater. One could define this group of SDAT caregivers
are seasoned and not novices. Only 24.7% have cared for
the SDAT relative for less than 2 years and over 58% have
cared for the SDAT relative for 3 years and over.

Extraneous Variables

 

Pearson r correlation coefficients were performed
on the interval data of sociodemographic characteristics
of patient age, caregiver age and length of caregiving
to determine if a significant relationship existed among
these background variables and the primary study variables.
The correlation coefficients are shown in Table 2.
Neither patient age, caregiver age or duration of care
were found to be significantly related to the two primary
study variables.

One-way ANOVAs were performed on the categorical
data of caregiver sociodemographic Characteristics of
marital status, educational level, employment status,
relationship to SDAT relative, gender and living
arrangements in relationship to the SDAT relative to
determine if a significant relationship existed among
any of these background variables and the two primary
study variables. The one-way ANOVAs (Table 3.) for the
categorical sociodemographic characteristics showed a
significant relationship between perceived caregiver

competence and caregiver employment status (3(1, 99)=6.5,

37

 

 

 

 

Table 2. Correlation Coefficients of Sociodemographic
Characteristics and Perceived Competence and
Positive Well-Being (N = 109).
BCAGE BDURCARE BPAGE COMPMEAN PWELL
BCAGE .24 .16 -007 -005
p=.01 p=.10 p=.50 p=.63
BDURCARE .24 .07 .03 .15
p=.01 p=.50 p=.73 =.13
BPAGE .16 .07 -.04 .02
p=.10 p=.50 p=.67 p=.88
COMPMEAN -.07 .03 -.04 .33
p=.50 p=.73 p=.67 p=.00
PWELL -.05 .15 .02 .33
p=.63 p=.13 p=.88 p=.00
Table 3. ANOVAs of Sociodemographic Characteristics to
Perceived Competence and Positive Well-Being
(N = 109).
Caregiver Caregiver
Perceived Positive
Competence Well-Being
Living Arrangements F = .32 F = 2.65
= .56 p = .10
Caregiver Marital F = .63 F = .19
Status p = .53 p = .82
Caregiver Educational F = .54 F = 1.76
Status p = .66 p = .16
Caregiver Employment F = 6.58 F = .23
Status p = .01 p = .63
Caregiver Relationship F = .79 F = 1.40
To Relative p = .45 p = .25
Caregiver Gender F = .96 F = .24
p = .33 p = .62

 

38

p=.01). Employed caregivers had less perceived competence
whereas unemployed caregivers displayed a greater level
of perceived competence. Caregiver gender, caregiver
marital status, caregiver educational level and caregiver
living arrangements to the SDAT relative where not found
to be significantly related to either of the two primary
study variables. Thus, caregiver employment status was
added as an extraneous variable to the multiple regression
model.

Univariate statistics were performed to calculate
the means, standard deviations and range for the 6 ADL
tasks. A Cronbach alpha was not obtained due to the
nominal nature of the score. The ADL assistance
requirements shown in Table 4. for the SDAT relative in
wave 3 indicated a high need for assistance with the 6
ADL tasks with a mean of .78 (SD=.28) out of a possible
range of 0-1. The caregivers (N=107) assisted the SDAT
relative most in dressing, grooming and bathing (N=97
or 90.6%), followed by need to assist with toileting (N=87
or 74.7%) and eating (N=76 or 71.6%). Walking was the
least ADL task that required assistance from the caregiver
(N=54 or 50.5%).

Univariate statistics were performed to calculate
the mean, standard deviation and range of the 7 items
on the cognitive incapacity scale. A Cronbach alpha was
performed to determine the internal consistency of the

scale for the sample in this study. The level of cognitive

39

incapacity shown in Table 4. was moderately high for the
SDAT relative in wave 3 with a mean of 1.89 (SD=.61) out
of a possible range of 0-3. The SDAT relative was almost
always forgetful (mean=2.27, SD=.91) and confused
(mean=2.02, SD=.79). In this study, the cognitive
incapacity scale maintained internal consistency with
a Cronbach alpha of .74 compared to a Cronbach alpha of
.79 (N=93) in the original study.

Overall, the SDAT relatives in this study showed
a high degree of need for assistance with ADLs and a

moderately high level of cognitive incapacity.

Table 4. Means, Standard Deviations, Ranges and Cronbach
Alphas for the Scales Used in the Study

Scale Mean SD Ranges Cronbach Alpha
Possible Actual Original This
Study Study

 

ADLs* .78 .28 0-1 0-1 -- --

Cognitive 1.89 .61 0-3 .4-3 .79 .74

Incapacity

Perceived 3.67 .59 1-5 1.6-5 .76 .72

Competence

Positive 2.34 .63 1-4 1-3.8 .92 .92
,_flell:Beina

 

*No determined alpha due to nominal measurement

Primary Study Variables

Univariate statistics of mean, standard deviation
and range and Cronbach alphas were performed on the two
primary study scales (Table 4.). The 5-item Perceived

Competence scale used in this study showed acceptable

40
internal consistency with Cronbach alpha of .72. The
caregivers felt moderately competent (mean=3.67, SD=.59)
to care for the SDAT relative. With the actual range
minimum being 1.6, the caregivers did not strongly disagree
on any of the items on the scale. The Positive Well—Being
scale (Table 4.) showed strong internal consistency with
Cronbach alpha of .92. The caregiver's overall mean of
2.34 (SD=.63) indicates that some to most of the time the
caregivers had feelings of positive well-being over the
past month.

The SDAT caregivers in this study displayed a
perception of feeling competent as a caregiver with
associated positive feelings of mental health some to most
of the time.

Answer to Study Question

 

A step-wise multiple regression analysis with forward
entry of variables was performed to quantify the
relationship between caregiver perceived competence and
caregiver positive well-being. This statistical procedure
is a method used for understanding the effect of two or
more independent variables on a dependent variable (Polit
and Hungler, 1995). Block style entry of variables was
used to extract the effect of the extraneous variables.The
patient characteristics of ADLs and cognitive incapacity
were entered first so caregiver employment status could
be examined in relation to positive well-being without

these two patient characteristics influencing the

41
relationship. Then, caregiver employment status was entered
so the combined simultaneous influence of the two patient
characteristics and caregiver employment status could be
extracted from the relationship between caregiver perceived
competence and caregiver positive well-being. The patient
characteristics of ADLs and cognitive incapacity (Table
5.) explained 1% of the total variance in caregiver positive
well-being. Neither of these patient Characteristics were
statistical significant to positive well-being in this

regression model.

Table 5. Multiple Regression Predicting Positive
Well-Being in SDAT Caregivers (N = 109).

Step Beta Mult R Total R2 Adj R2 F-value F-signf

 

Block 1 .12 .01 .01 .63 .53
Patient
ADLs .05
Cognitive -.08
Incapacity

 

 

Block 2 .14 .02 .01 .61 .61
Caregiver
Employment -.01
Block 3 .39 .15 .13 4.04 .0046*
Primary
Variable
Competence .38*
*p < .005

 

 

 

 

 

 

 

 

 

When the caregiver variable of employment status was
added to the multiple regression model, the explained
variance was 2% of the total variance in caregiver positive
well-being. The percent of explained difference was only

1%. Caregiver employment status was not found to be

42
statistically significant to positive well-being in this
regression model.

After the combined effects of ADLs, cognitive
incapacity and caregiver employment status were removed
and the primary study variable caregiver perceived
competence was added to the multiple regression model,
the explained variance increased to 15% of the total
variance in caregiver positive well-being. The adjusted
R-squared changed by .13 for caregiver perceived
competence. The predictor variable of caregiver perceived
competence was significant (§=4.04, p=.0046) in
relationship to caregiver positive well-being by this
multiple regression model.

DISCUSSION

Interpretation Relative to Framework and Literature

 

It is important to acknowledge the complexity of the
SDAT caregiving process. Pearlin's et al. (1990) stress
model of SDAT caregiving illustrates this complexity and
one must be aware that there are numerous potential
variables that can effect the ultimate outcome of the SDAT
caregiving process that were not evaluated in this study
that could have effected the examined relationship. This
secondary analysis looked at only a compact segment of
the Alzheimer's caregiving stress model of Pearlin et al.
(1990) whiCh focused on an intrapsychic secondary strain
in relation to a positive mental health outcome to the

caregiving process. This was a preliminary study of the

43

examination of the relationship between caregiver perceived
competence and caregiver positive well-being. This study
was able to determine that caregiver perceived competence
is a strong predictor variable of caregiver positive
well-being. The value of this study should not be diminished
but more variables need to be added to the multiple
regression model designed in this study. Pearlin's et
al. (1990) stress model will lend theoretical guidance
as to what variables should be potential variables.

In accordance with Pearlin's et al. (1990)
conceptualization of the caregiving stress process and
the literature review based on this topic, one would predict
that the primary stressors of ADL dependence and cognitive
incapacity would effect the relationship between caregiver
perceived competence and positive well-being. In this
analysis, that did not happen. Using the SDAT caregiver
sample in this study, this researcher was unable to find
support to include ADLs and cognitive incapacity as
significant predictors of caregiver positive well-being.
This researcher was able to find support to state that
caregiver perceived competence is a significant predictor
of caregiver positive well-being bearing in mind that
caregiver perceived competence is not the only predictor.

The SDAT caregivers in this study were seasoned
caregivers who were able to express feelings of positive
well-being from the caregiving experience with maintenance

of a comfortable level of perceived competence. These

44
findings are supported by Aneshensel et al. (1995) who
concluded that as patient condition worsens over time,
the caregiver's appraisal in relation to caregiving
decreases the doubt about skills in performing caregiving
tasks and the caregiver feels positive about the job they
are doing.

Of the caregiver variables examined in relation to
caregiver perceived competence and caregiver positive
well-being, only one was significant to either of the
primary study variables and that was caregiver employment
status. Although the mean differences were significant
as calculated by ANOVA, the variable of caregiver employment
status was not a significant predictor in the regression
model. Caregiver employment status was unable to account
for more that 1% of the total variance found in caregiver
positive well-being.

There is much research that shows that,SDAT caregivers
experience depression and other adverse effects as the
outcome to the caregiving process (Given and Given, 1991;
Kuhlman et al., 1991; Pruchno and Potashnik, 1989; Schulz
et al., 1995). Research also shows that caregivers can
vary in their response to the caregiving process (Collins
et al., 1994; Williamson and Schulz, 1993; Zarit et al.,
1986) which shows that adverse outcomes to the caregiving
process do not need to be the norm. The findings in this
study aid the growing body of much needed research

literature that is documenting that feelings of positive

45
well-being can be achieved as an outcome to the caregiving
process. The possession of a self-perception of competence
in the caregiving role is only one factor that has the
potential to influence caregiver positive well-being.

Limitations and Methodological Problems

 

One of the most serious limitations of this study
was the voluntary convenience sample. The sample only used
caregiver/patient dyads who used adult day care centers,
health agencies or where on the Alzheimer's Association
mailing list. The sample did not encompass caregivers
who are "doing it alone", who do not seek outside assistance
or perceive that no assistance is necessary. The sampling
procedure is similar to other SDAT caregiving research
sample. This sampling procedure limits the generalizability
of the study's findings.

The diagnosis of SDAT or related dementia was
self-reported by the caregiver and not a medical diagnosis.
Diagnostic uncertainty must be viewed as a limitation in
the study for the results may not be applicable for
caregivers with relatives that have been medically diagnosed
with SDAT or a related dementia.

Due to the cross-sectional design of this secondary
analysis, the reader must be cautious in the findings since
directionality of the relationship of the primary study
variables can not be determined. The use of cross-sectional
design in SDAT caregiving has been the major design used

in the research literature up to this point in time.

46

SDAT caregiving is a complex process that encompasses
the family and not just a single individual. A limitation
of this study is that it attempted to simplify the
caregiving process by looking at only the primary caregiver
and not the family dynamics and functioning.

The operationalization of the concept of caregiver
perceived competence in this study was used by a S-item
scale. The concept of perceived competence may not have
been represented to its fullest capacity with only 5 items.
A more broad, encompassing scale of the self-perception
of competence may have been justified.

Recommendations for Future Research

 

Now that caregiver perceived competence has been shown
to be a factor that can strongly predict caregiver positive
well-being, further research on the topic needs to be done.
Longitudinal research studies need to be undertaken to
examine perceived competence level of the SDAT caregiver
over time and at different stages of the relative's course
of dementia. Caregiver positive well-being needs to be
examined in relationship to caregiver perceived competence
over time. Does the relationship between these two
variables remain stable?; do they Change?; how do they
Change?; and what influences the change?

An experimental study that would examine the
relationship between caregiver perceived competence and
caregiver positive well—being would be interesting. An

experimental study to see if an intervention to improve

47
perceived competence would result in an improvement in
positive well-being.

This study evaluated the relationship between caregiver
perceived competence and caregiver positive well-being
examining the effects of ADL assistance requirements of
the SDAT relative, the level of cognitive incapacity of
the SDAT relative and caregiver employment status on this
relationship. Future research on this topic needs to
encompass variables that have the potential to alter the
relationship between caregiver perceived competence and
positive well-being. Patient behavior variables of night
time wandering, incontinence and agitation need to be
examined. A step further in research would include the
examination of caregiver's perceived competence to positive
well-being when the SDAT patient moves into the nursing
home setting.

The relationship between caregiver perceived competence
and caregiver positive well-being needs to be evaluated
by taking into consideration the perception of the
caregiver's physical health before and after caregiving;
financial/economic constraints; the use of social support
network and prior caregiver experience. The consideration
of family dynamics and functioning as well as the quality
of the prior relationship and role status of caregiver
to patient should be evaluated. The difference between
caregiver's perception of competence and level of competence

perceived by the external system is important to examine.

48

Research needs to be undertaken in the future to
attempt to persuade more male caregivers, nonspousal
caregivers and minority caregivers to participant in
research studies. Research studies also have to find a
way to include the elusive caregivers who have isolated
themselves and the care-recipient from formal caregiving
programs or who have chosen not to use services or seek
assistance in their caregiving role.

Implications for Nursing Practice

 

After the APN evaluates this study for strengths and
weaknesses, she/he will determine that the limitations
do not invalidate the findings and conclusions. This study
is theoretically based which only further strengthens the
knowledge of APNs. The APN needs to consider not only
characteristics of this study that may fit her own nursing
practice, but also whether or not her/his present nursing
behaviors are effective or does she/he need to change
present practice behaviors (Stetler and Marram, 1976).
APNs must decide for themselveswhether or not to apply
these research findings into direct action.

According to Stetler and Marram (1976), the APN has
3 choices in the decision-making process of what to do
with this study's findings: (1) nonapplication; (2)
cognitive application; or (3) direct application. This
researcher advocates the use of this study to APNs in the
area of cognitive application. Clinically, it is important

to assess caregiver perceived competence and safeguard

49

against the caregiver underestimating her/his caregiving
skills. In collaboration with the caregiver, the APN can
determine areas of strength and weaknesses in the caregiving
role. The APN then can teach the necessary skills in the
areas of weakness of the caregiver's perceived competence
level. APNs will need to determine if the caregiver has
redefined their meaning of satisfactory completion of
caregiving tasks through the course of the disease. A major
role the APN will have is to validate the caregiver's
ability to perform the caregiving tasks. The APN must
review with the caregiver those aspects of care that can
not be controlled and reassure the caregiver that it does
not translate into meaning the care is being performed
incorrectly. The APN may use her assessor role and educator
role to boost caregiver's self-perception of competence
in the SDAT caregiving role.

The findings of this study would require minimal cost
to incorporate into practice but would require the APN
to use her/his case management role to provide the necessary
holistic care of both the SDAT patient and the SDAT
caregiver. The APN may use the researcher role to replicate
this study to determine the significance of caregiver
perceived competence and caregiver positive well-being
first hand.

The cost-effectiveness in incorporating the findings
of this study into practice lie in the interventions

necessary to decrease and/or prevent the incidence of

50
depression in SDAT caregivers and foster positive
well-being. APNs need to direct efforts to aid the caregiver
in avoiding the proliferation of secondary stressors that
can be prevented or minimized and promote the aspects of
mental health. The APN should assist the caregiver in
evaluating what aspects of the current caregiving situation
can be modified and managed. Assessment of caregiver
positive well-being is important. The APN must remember
to examine the mental health of the SDAT caregiver.
Unfortunately, health care professionals (HCPs) often fall
one question short when dealing with the SDAT
patient/caregiver dyad. HCPs will address the patient
problem forgetting that the patient problem has the
potential to proliferate into a caregiver stressor. The
use of Pearlin's et al. (1990) model will guide APNs to
ask that question in order to provide holistic care and
see the "whole" picture. The APN determination of the
caregiver's inability to meet caregiving demands is crucial
for the positive well-being of the caregiver.

The APN must use her counselor role to evaluate the
mental health status of the SDAT caregiver and provide
assistance when the caregiver is in need of emotional
support. The APN must instill hope into the SDAT caregiver
and provide the nuturance to enhance positive mental health.
The APN can assess the need for respite care for the
caregiver, explore what activities the caregiver enjoys

doing and determine the pattern of social support the

51
caregiver utilizes.

The final implication to APNs this study suggests
addresses the current legislation proposed in California.
Legislation to determine competency of skills of family
members or designated caregivers to care for an individual
being discharged from a hospital with a chronic disease
is being proposed. The APN must be aware of the societal
concerns this proposed legislation entails. APNs will
need to be cognizant of a potential conflict between the
self-perception of competence of a caregiver and the health
care system's "gold standard of care". APNs must
rationalize should HCPs even judge competency of caregivers
or is caregiving a personal and family matter not Open
to outside scrutiny? HCPs ask, even sometimes demand,
that a family member take home an individual from the
hospital when that caregiver does not perceive she/he are
competent to do so. Will judgment of competence from an
outsider deleterious effect the positive well-being of
the caregiver? APNs are in the prime position to deliver
holistic care and examine all aspects of the caregiving
process.

This study examined the relationship between caregiver
perceived competence and caregiver positive well-being
in family caregivers of a SDAT relative in the home setting.
Caregiver perceived competence was found to be one factor
that is able to account for the variance in caregiver

positive well-being. Health care delivery trends will demand

52
the continuation and maintenance of home care for SDAT
individuals. The SDAT caregiver will undoubtedly be faced
with the stress of SDAT caregiving. Family SDAT caregivers
must not be left to face this stress alone and must be
supported in their caregiving efforts so they will not
abandon this role. APNs are at an unique position to foster
the caregiver's perception of competence and provide
holistic care to promote positive well-being in this vital

and important group of informal caregivers.

APPENDICES

APPENDIX A

53
APPENDIX A
POSITIVE WELL-BEING
For each question, read the statement then circle the 923
answer that comes closest to the way you have been feeling

during the past month. There are no right or wrong answers.

DURING THE PAST MONTH, HOW MUCH OF THE TIME...

 

1. have you felt that the future looks hopeful and

promising?

ALMOST ALL MOST OF SOME OF RARELY OR

THE TIME THE TIME THE TIME NONE OF THE
TIME

2. has your daily life been full of things that were

interesting?

ALMOST ALL MOST OF SOME OF RARELY OR

OF THE TIME THE TIME THE TIME NONE OF THE
TIME

3. did you feel relaxed and free of tension?

ALMOST ALL MOST OF SOME OF RARELY OR

OF THE TIME THE TIME THE TIME NONE OF THE
TIME

4. have you generally enjoyed the things you do?

ALMOST ALL MOST OF SOME OF RARELY OR

OF THE TIME THE TIME THE TIME NONE OF THE
TIME

5. have you felt calm and peaceful?

ALMOST ALL MOST OF SOME OF RARELY OR

OF THE TIME THE TIME THE TIME NONE OF THE
TIME

6. have you felt Cheerful, lighthearted?

ALMOST ALL MOST OF SOME OF RARELY OR

OF THE TIME THE TIME THE TIME NONE OF THE
TIME

7. were you a happy person?

ALMOST ALL MOST OF SOME OF RARELY OR

OF THE TIME THE TIME THE TIME NONE OF THE
TIME

8. have you been satisfied or pleased with your personal
life?

ALMOST ALL MOST OF SOME OF RARELY OR

OF THE TIME THE TIME THE TIME NONE OF THE
TIME

9. have you expected to have an interesting day?

ALMOST ALL MOST OF SOME OF RARELY OR

OF THE TIME THE TIME THE TIME NONE OF THE
TIME

10. have you been waking up feeling fresh and rested?

ALMOST ALL MOST OF SOME OF RARELY OR

OF THE TIME THE TIME THE TIME NONE OF THE

TIME

APPENDIX B

54
APPENDIX B

CAREGIVING INVENTORY
Perceived Competence

In the questions that follow, please circle the response that
most represents how you feel about each statement. The blank
line in the statements represents the name of the person for
whom you provide care for. Answer all the questions in
response to caring for your relative. Circle one response

for each statement.

 

 

 

 

 

1. I am uncertain what to do to help .
STRONGLY AGREE NEITHER AGREE DISAGREE STRONGLY
AGREE NOR DISAGREE DISAGREE
2. I know that is getting proper care when I take
care of him/her.
STRONGLY AGREE NEITHER AGREE DISAGREE STRONGLY
AGREE NOR DISAGREE DISAGREE
3. I could be doing a better job caring for .
STRONGLY AGREE NEITHER AGREE DISAGREE STRONGLY
AGREE NOR DISAGREE DISAGREE
4. I feel able to handle most of the problems in the care
of .
STRONGLY AGREE NEITHER AGREE DISAGREE STRONGLY
AGREE NOR DISAGREE DISAGREE
5. I am pretty good at figuring out what needs.
STRONGLY AGREE NEITHER AGREE DISAGREE STRONGLY

AGREE NOR DISAGREE DISAGREE

APPENDIX C

 

OFFICE OF
RESEARCH
AND
GRADUATE
STUDIES

University Committee on
Research involving
Human Settled:
(UCRIHS

Michigan State Universiiy
246 Administration Budding
East Lansmq, Michigan
«ENJOW

517/355-2180
FAX 517/432-1171

'r‘e Uri-rugs“ 5.2.? University
3354 m‘ 'flsfiri/mm." Duns-w
Eri‘i"‘i‘n"e m 4mm

MSU is an Jr’I/FLN'W'JCIIOH
90w! - oops/(unify mshi'unon

 
   

55

APPENDIX C

MICHIGAN STATE

UNIVERSITY

 

January 22, 1997

TO: Clare Collins.
A-129 Life SCiences

RE: IRBfi: 97-012

TITLE: THE RELATIONSHIP BETWEEN PERCEIVED COMPETENCE
AND POSITIVE WELL-BEING IN CAREGIVERS OF
RELATIVES WITH ALZHEIMERS DISEASE IN THE
COMMUNITY SETTING

REVISION REQUESTED: N/A

CATEGORY: l-E

APPROVAL DATE: 01/17/97

The University Committee on Research Involving Human Subjects'(UCRIHS)
review of this project is complete.. I am pleased to advise that the
rights and welfare of the human subjects appear to be adequately

rotected and methods to obtain informed consent are appropriate.
ggerefore, the UCRIHS approved this preject and any reViSions listed
a ove.

RENENAL: UCRIHS approval is valid for one calendar year, beginning with
the approval date shown above. Investigators planning to
continue a project be and one year must use the green renewal
form (enclosed with t e original agproval letter or when a
project is renewed) to seek u date certification. There is a
maximum of four such expedite renewals seible. Investigators
wishin to continue a prOJect beyond tha time need to submit it
again or complete review.

REVISIONS: UCRIHS must review eny changes in procedures involving human
subjeets, rior to initiation of t e change. If this is done at
the time o renewal, please use the green renewal form. To
revise an approved protocol at an 0 her time during the year,
send your written request to the. CRIHS Chair, requesting revised
approval and referenCin the preject's IRB # and title. Include
in ur request a descr ption of the change and any revised
ins ruments, consent forms or advertisements that are applicable.

Paostns/

CHANGES: Should either of the followin arise during the course of the
work, investi ators must noti UCRIHS promptly: (1) roblems
(unexpected s de effects, comp aints, e c.).involving uman
subjects.or (2) changes in the research environment or new
information indicating greater risk to the human sub ects than
existed when the protocol was previously reviewed an approved.

If we can be of any future help, lease do not hesitate to contact us
at (517)355-2180 or FAX (517I4 2- 171.

(it

Sincerely,

\

avid E. Wright,
RIHS Chair

DEW:bed

\oc : Anne McKune

LI ST OF REFERENCES

56

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"iiiiiiiiiiiii